Whole Heart and Soul

2011-03-02T20:15:00.003-07:00

March 2, 2011

I know it's been a while since I blogged. I did get my appointment date from Mayo. The first appointment was with a nurse practitioner to go over my medical history and figure out what testing I needed to do. I spent a couple of days doing blood work, a chest x-ray, and an abdominal CT scan with contrast. After that I met with my surgeon, Dr. Larson. The next day, January 28th, I had surgery. My rectum was removed. My j-pouch did not need any other revisions, which was a blessing. Surgery was on Friday and on Sunday I was discharged from the hospital.

A few days after surgery I spiked a fever. I went back in and did a urine test and more blood work and saw Dr. Larson. We thought it was a UTI so I started on antibiotics. After a week I wasn't getting better and was getting worse. I went back in for another abdominal CT scan where they found an abscess that had formed in the shape of a horseshoe around the outside of my j-pouch. There was a small fissure from my j-pouch leading to the abscess. Right there on the CT scan table they did a procedure where they cut a hole in my butt cheek and inserted a tube that went directly to the abscess. At the end of the tube is a plastic bulb which is squeezed closed to form suction. That is the treatment for the abscess. They also started me on two other antibiotics to keep the infection from entering my blood stream. I was hospitalized for a couple of days after that for observation.

I've had the drain tube in for, hmmmm . . . is it three weeks now? Each week I go in for a sinogram, where they insert contrast into the drain tube and take x-rays so they can see how much the abscess is shrinking (which it is). The first day my drain collected 410 ML of fluid. Today it collected less than 25 ML of fluid. I'm hoping we're close to the end of this as I have not enjoyed having a tube and bulb hanging off my back side. Dr. Larson said once the abscess cavity has collapsed, he may have to reposition the end of the tube so it is directly at the fissure and can help collapse that space too. I'm hoping that happens without having the reposition the tube (as that process is a little painful). Dr. Larson said, "This is recoverable," when he explained the abscess and treatment process. "It's just going to take patience." Okay. I can do patience. He said it could take anywhere from 1-6 weeks for the abscess to heal.

I had to ask him about my worst fear (another surgery). "Is it possible the abscess could get worse and I would need surgery?" In his ever-so matter of fact manner he told me it was, but that it was unlikely that would happen.

Meanwhile, last week, I noticed the skin around my stoma was getting red and felt hot to the touch. Not good, I know. Oh, and it hurt like a son-of-a-gun. Then I noticed a little puss coming out round the edge. Ay-yi-yi. Not good. At my weekly appointment with Dr. Larson, I brought up the issue and he said he would take a look at the stoma when the ostomy nurse changed my bag. He said I probably had a little skin infection that they would put me on another antibiotic for. But then he actually saw the infection. "Oh. We're going to need to open that up," he said sort of under his breath.

I lay on the table with him and the nurses poking at the infection. Tears flowed. I groaned and said, "Oh that hurts! That hurts!" several times. Dr. Larson kept apologizing. "Please can you stop?" I asked in sobs. "Yes. We can stop." He told me they would use lidocaine to numb the area, but the lidocaine would hurt and burn, and then he would slice open the infected area. Couldn't they knock me out to do this? He started with the lidocane. "Oh God, oh God, oh God," I whispered as I focused on the ceiling above me. My hands began to shake uncontrollably. Then I felt my upper body begin to shake. "Are you okay?" Dr. Larson asked, and then frowned at himself and said, "Of course you're not okay." I did have some immediate relief after that, though the pain of the cut started a while later after the lidocaine wore off. Dr. Larson apologized numerous times for the pain. He squeezed my shoulder and said he was sorry that all he seemed to do was torture me when I saw him.

I've gone in to see the ostomy nurses several times since then and the infection has been getting better. They helped find an appropriate bag that would fit my stoma and would allow the infected area to drain. They've all been very concerned that my bag would work and wouldn't leak. I've been grateful that they understand the importance of that.

Jeremy and I both have family within an hour or two drive of the Mayo, so I have been staying close in order to get to my appointments and ensure Dr. Larson can follow my care. I'm so glad I've stayed. Mayo is amazing. I'm sure I will dedicate an entire blog entry to my Mayo experience. Jeremy has gone back and forth between Tucson and the Mayo area. The times he is back home are very hard for me - and for him. We are still on track for having my ostomy take-down surgery the end of April. That time CANNOT come fast enough in my book.

Whether it's the pain, all the medications, or the psychological part of having an ostomy again, I don't know, but my appetite is horrible. It really freaks me out. I know I'm only going to get better if I keep my body fueled and get plenty of protein, but I seriously fight my gag reflex with most meals I'm eating. Jeremy told me tonight I'm thinner than he likes to see me. I'm not skin and bones, but I have lost some weight. I'm trying though. I'm trying . . .

So thems the facts of what's been happening. My emotional journey here has been much more difficult than I was anticipating. I'll be writing more about that soon . . .

I continue to be grateful for the support Jeremy and I have received from our family and friends that have made my journey to a healthier life possible. My heart wells up with love for you all just thinking about it.

Next stop, Canaan

2011-01-12T19:05:00.003-07:00

January 12, 2011

Tucson is my home, my community. And while the shooting that occurred on Saturday did not involve me or anyone I know directly, the degrees of separation are few in this little big city. The sadness is palpable as we all go about our daily routines.

The trauma of it all has caused old traumas to resurface, not just for me, but for many of us. For me personally, UMC, the hospital where the shooting victims went, was the hospital where I lost my daughter and my colon. I think of Gabby Giffords and the others, picture them there, hear references to the hospital all day long, and my body almost immediately tightens, every muscle freezing in some sort of deep, primal remembering.

I try to fathom the healing journey the survivors have ahead of them, not just physically, but mentally and emotionally and I cry out to God, Please give them the strength and courage to heal God. Please. Don't let them be discouraged.

I wish I were a better person and could say that my own troubles and worries have fallen by the wayside as the weekend's events put my situation in perspective. But I'm not a better person. My already burdened mind is ever so slowly slipping down the muddy slope of discouragement. But here's the key! I know that's what's happening. I'm getting discouraged and I know it. And I'll be damned if I'm going to be discouraged right now. There's just no room for discouragement right now. None.

Jeremy, as you undoubtedly know, is a musician. The man inhales and exhales music. And while we don't necessarily have the same taste in what we listen to, he knows what I like. He knows what I don't like. He knows what I love. He knows what moves me. His knowledge did not fail him this morning either.

"I picked up the newest Daniel Lanois yesterday. You've gotta hear this song. You're gonna like it," he said as he popped the disc into the player. The music started and I was digging the beat. The first verse, Yeah, okay, I really like this, and then the chorus started and it socked the breath out of me. A wall of voices, crying out in song: "How far am I from Canaan? How far am I from joy, from joy? How far am I from Canaan? How far am I from joy, from joy?"

I was overwhelmed and started crying. "Oh sweetie," he said as he came to sit beside me and held my head against his shoulder, "I knew you'd like it."

I've listened to that song on repeat all day. You can be in Canaan right now Abby. You just have to choose it. With every tragedy that has befallen you, you have been touched by just as much goodness, grace and love. Don't just see the tragedy Abby. See the goodness. See the grace. Feel the love. And so that's the choice I'm making today. That's the choice I'm making right now. To see the beautiful things we do to support and love each other in times of need. To see the courage we give to one another. To see the faith and hope we inspire in one another. That's what I'm choosing.

Canaan is right there in front of you.

Now we wait

2011-01-07T05:29:00.003-07:00

January 7, 2011

"So you're ready for the revision surgery Abby?" Dr. T asked. "I'm not going to lie to you, it's going to be difficult. It's an extremely complicated surgery. I would like you to go to the Mayo Clinic in Rochester to have it done. What you need is a team that can follow you for life, because you are going to need lifelong care, and none of those doctors are going anywhere. If you were my sister, that's where I would want you to go." She went on to describe that Mayo has diagnostic equipment that she doesn't have access to here. She told me about the specific surgeon she wanted me to see and said she had already consulted with him about my case and that she would be calling him again this weekend to talk more. She told me the name of one of the world's leading doctors on pouchitis (which I have had) who is at the Mayo. She said they have an excellent GI team and a whole team of ostomy nurses who know their stuff. They have done more j-pouch surgeries than anywhere else. She did her residency there and knows the teams personally which is a bonus.

Relief at her level of concern for me brought me to tears and I sobbed, "Thank you." We talked about the possible complications, incontinence being one of the scarier ones for me. We talked about the possibility of ending up with a permanent ostomy and how one of the surgeons at Mayo would probably try to convince me to choose that route without even trying the revision surgery. "Of course I don't want to end up with a permanent ostomy, but if it happens, I'm prepared for it. People live healthy, active lives with ostomies. I just want to be healthy," I said. She said that was a good place to be mentally going into the surgery.

Mayo is out of network for my insurance. Dr. T said she didn't think she would have any problems getting approval for it though. "I'd be surprised if I even had to talk to your insurance company," she said as she wrote on the referral form Extremely complicated surgery. Refer to Mayo Clinic.

Dr. T told me Mayo would call me with an appointment time. At that appointment I would meet with the surgeon. They would do some tests (probably a pouchogram) that day and then most likely would do the surgery the very next day. For sure they will remove the remainder of my rectum. Whatever other revisions they do or if they need to make a whole new pouch will be determined upon the results of the tests they do. She said typically people are hospitalized for five to seven days after the surgery, but it may be a little longer for me. I was hospitalized for 13 days after my original j-pouch was created as I had a few complications. She said they like you to stay around the area for a while before flying back home after the surgery too, though I wasn't completely sure what that timeline would look like and I'm sure will depend on how I'm feeling and if there are complications or not.

I will have a temporary/diverted ostomy after the surgery so the area can heal. I asked if the quality of my temporary ostomy would be better because I had so many problems with the previous one. She practically scoffed when she told me it would be better quality. After about three months, if all goes well, the ostomy can be taken down. She said she could do the takedown surgery for me, but she would prefer I have the same surgeon do it so that I have that continuity of care. She said she would want me to have my annual scoping done at the Mayo too.

She spent plenty of time talking about the possible complications. "You understand the rectal sphincter is going to be traumatized again, which compromises it?" Yes. I told her I understood. I showed her the research articles I had read. She seemed to get excited as she looked at the articles because she personally knew the surgeons who had written one of them.

She asked us about plans to get pregnant. We told her we had none. She said chances of getting pregnant the old-fashioned way decrease with each surgery. She said she would want me to talk with a fertility specialist anyway while we were at Mayo.

After talking about all the risks, Dr. T told me the surgeon she wants me to see would be much more optimistic about things. All that being said, she said she was glad I'm doing this and thinks it's a good choice.

I'm still processing everything we talked about. But I'm ready. And so now we wait to hear from the Mayo.

Here we go!

2011-01-05T06:53:00.002-07:00

January 5, 2011

I’ve been reading. Trying to educate myself for my appointment with Dr. T today. Articles like Ileal Pouch-Anal Anastomosis: Reoperation for Pouch-related Complications and Reconstruction for Chronic Dysfunction of Ileoanal Pouches. I feel like I have a good grasp on the complications that can occur (and there are many) and on what the chances of improving my quality of life with this revision surgery are. Each article mentioned that no one in their research died from resulting complications. Okay. That’s good. I’m not risking my life here . . . just my quality of life.

I had an emotional reaction when I read about the average improvements in frequency of bowel movements after revision/reconstruction surgery (both daytime and nighttime improvements in frequency). I also realized that I have more symptoms that are not what is expected after having a j-pouch surgery than just rectal pain. Please understand, I have never expected my life to be what it was before UC. Never. But there has been plenty of research describing what life for the average j-poucher is. So it's been hard for me to know what is just something I should live with and what is something that can improve. From reading these articles though, I’m hopeful that my functioning will improve in more ways than just not being in pain any more, not to mention the UC will be completely removed from my body. That thought is actually exciting to me. And I realized too that I am the only person who can decide what I am willing to risk to improve my quality of life. I'm the only one living in this body. I am not satisfied with my quality of life right now.

So I feel confident going into this appointment that I will ask educated questions and hopefully my emotions will be under control enough that I can actually hear and understand what Dr. T is telling me. I’m glad Jeremy will be there for that reason too. It’s always good to have an extra pair of ears at these appointments. I can’t tell you how many times we’ve debriefed only to find one or the other of us had picked up on significant information that the other missed. It’s good to have a life-partner who is so willing to be there in that way. I’m a blessed woman. So here we go!

Reprieve

2010-12-19T15:40:00.003-07:00

December 19, 2010

I've been feeling some relief the last few days. I think my UC flare has been dying down. Whew! So not only does that mean my rectal pain has (for the most part) subsided, it also means my bowel movements are no longer like a faucet has been turned on every time I go. Hydration is so hard when things get like that, which means I feel faint and completely exhausted too. When I'm not flaring, I actually have bowel movements that are pretty close to solid and so I'm able to stay hydrated fairly easily. My frequency of bowel movements has gone down now that my flare has subsided too. Instead of getting up every hour and a half to two hours at night when flaring, I am able to get up once or twice a night. I can live with that.

I'm very much looking forward to my January 5th surgery consultation so I can move forward with having the rest of the UC removed from me. I'm also ever so grateful for the reprieve from pain. Thank you God.

Visions of sugar-plumbs

2010-12-17T06:00:00.005-07:00

December 17, 2010

My dreams this week have been crazy. I'm almost embarrassed to say it (though I think those of you who are colonless or have bowel issues might understand), but I actually dreamt that I had a normal bowel movement. In reflecting on that dream, I think it was a hopeful sign. I've given a lot of thought to how having the revision surgery may affect me, and one of my hopes is that my bowel movements will be more "normal" as a result. (More "normal" being not going 12 times a day and being able to have bowel movements that come out larger than the size of a pencil - sorry if that's too much information.) I guess that hope has gone deeper into my psyche than I realized.

Then last night I had a nightmare about my upcoming hernia repair. I don't even want to call it a surgery because it's so minor, but apparently I'm a little more concerned about it than I've allowed myself to acknowledge. Last night I dreamt that my surgeon began cutting into me and completely opened me up and I hadn't even been put under. I started yelling, "What are you doing?! Stop! I can feel that!" I'm know that's a pretty common pre-surgery dream for folks, but it still has me shuddering a little.

So here's to an upcoming night of sweet dreams. Visions of sugar-plumbs would be okay too.

Healing for everyone

2010-12-14T05:07:00.002-07:00

December 14, 2010

What time is it? 4:13? Oh man. That's way too early. You've got to go back to sleep. Lay on your back. Yeah. That'll help. Then you won't have to feel like you have to go to the bathroom so badly. Oh boy. Remember what sleeping was like when you had your ostomy? Remember how you couldn't lay on your left side like that? And no sleeping on your stomach. Are you sure you're up for that again?

I could feel my heart beat in my chest. I could feel my breathing quicken. Relax Abby. Don't think about that. Think about something else. I lay in the quiet and hear the thickness of the air around my ears. I focus on the pattern of both Jeremy and Django's inhale and exhale. I wonder if I'll have to have a PIC line again. I wonder if my sleep will be encumbered by tubes from my arm to a bag of fluids. Jessica has a PIC line right now because of her pregnancy. She's 24 weeks. That's when I lost Harper. 24 weeks. She still has some weeks to go before she meets the mark of when she lost her little girl. Oh the fear she's experiencing. . . I get it. I really do.

There's so much fear out there. What was it Jason was saying to me about Blake and lost innocence? I need to read those poems. That's how I feel, like pain has stolen my innocence. But that's how we all feel. Everyone is going through something. Everyone. Tara, Emma, Lisa, Maria, Tami, Jessica . . . take a deep breath Abby. Oh God. Why is there so much pain? I just don't get it. I can't even hope for a world without pain, can I? So if I can't hope for a world without pain, what can I hope for? You can hope to handle it with grace. And you can love Abby. Remember? You can love. Keep loving. But it's so hard to love. It really is. It's so hard to open my heart to the pain that other people are feeling. It touches something so deep inside of me. And it hurts. And quite honestly, it scares me. It does that for everyone Abby. Everyone feels that way. But we have to keep on doing it, don't we? Even when it hurts. Especially when it hurts.

Okay God. I'm praying right now from a place of fear and of skepticism and of complete overwhelm. But I'm praying because I have not lost hope that you will hear my prayer. The only things I feel I can even beseech you (if there is a you) for are peace, love, and comfort. Healing would be nice too God. Healing for everyone.

Back to the lab

2010-12-13T05:38:00.004-07:00

December 13, 2010

Friday was one heck of a day for me. When I got to work, I just didn't know how I was going to manage another day in the amount of pain I was in. I don't recall being in this much rectal pain since after surgery. I wondered if I needed a dilation, as the symptoms I was experiencing suggested as much. I knew Dr. T was only in the GI Lab on Fridays, so I decided to see if I could get in to see her. But I've got to tell you, just making that decision totally stressed me out because I had to, yet again, leave work early to get it taken care of. I hate doing that. Grrrrr . . .

I also didn't exactly follow regular appointment scheduling procedure to get in. Thank goodness the folks in the GI Lab know me and were willing to go out of their way to help me get in. Jeremy doesn't work on Fridays, so he was able to drive me and be there with me.

They took me back to the prep area and Jeremy sat next to me while I stretched out on the gurney and they started my IV. He's always so entertaining in that setting and I was glad he was with me. Dr. T came back to say hello. "So you're in a lot of pain?" she asked. I fought back the tears as I told her I was. "We'll get in there and see what's going on. We're going to use general anesthesia on you then if that's okay since your pain level is so high." That was a-okay with me. There have been times that I have been scoped/dilated and I could hear myself yell in pain with the conscious sedation drugs. I didn't need any of that right now.

They wheeled me back to the procedure room and the anesthesiologist laughed as I assumed the position. "You really know the drill, don't you?" I smiled, but just couldn't laugh. Tears started to roll down my cheeks as the drugs were administered. I'm just so worn out.

The next thing I knew, I could hear people talking around me. "I'm cold. Could I get another blanket?" I mumbled in an intoxicated manner. "What?" Jeremy asked. Where am I? What's Jeremy doing here? Are they done already? The last thing I knew I was crying, looking up at the anesthesiologist telling him my face felt tingly. Ah yes. I must be done. "What did she say?" I asked Jeremy, but I must not have been talking clearly as he asked me again what I had just said. "What did she say?" I asked.

"She said you didn't need a dilation." I broke down in a full-on sob. "Oh no. No Abby. That's good, right? You didn't need a dilation," he leaned over me and held his face next to mine smoothing my hair as I continued to cry. He doesn't understand. No dilation? "She said your rectum was inflamed though, and she took a biopsy of the tissue in your pouch to see if you have an infection there. She said they'll know in 7 days. If you have an infection she'll put you on a course of antibiotics. But that's good Abby. You didn't need a dilation." I wish he would stop saying that's good. It's not good. It's horrible. "What's wrong Abby?" he said as he kept smoothing my hair.

"If it was just that I needed a dilation then it could have been done and over with and I would have some relief. But it's that the disease is flaring?" I could barely finish my sentence. "I have to keep going in this pain," I sobbed.

I got it together though, by the time we got home. I was just so tired. I'm sure the drugs had messed with my emotions a little too. Always a strange and scary feeling to come to after being under. Nothing a little sleep couldn't help improve a little. So over the weekend I have doubled up on me enemas and have doubled my Cipro intake (both within limits advised by my doctor). I have used the hot-tub several times which has helped manage my pain. I have slept and given myself permission to do very little. This morning I'm feeling a little better. I just hope I'm on the upswing now.

I told Dr. T I am ready for the revision surgery. She told Jeremy when I come in for the consultation she'll explain it all to me in detail so I know what I'm getting into. After the revision surgery there will be no more UC in my body to flare like this. No more disease!! For that I cannot wait.

One girl, one boy

2010-12-10T05:47:00.003-07:00

December 10, 2010

Yesterday morning was not a pretty time around our household. This has been a really stressful week for both Jeremy and me. I won't bore you with the mundane details of the pile of stressors that have fallen upon us, but suffice it to say, we we were both at our respective tipping points. The discovery of the breakdown of the washing machine first thing in the morning was what pushed us over the edge and a loud argument ensued. No wait, it was actually this sentence: "Could you call a repairman?" that did it. For my part, if I remember correctly, there was slamming of a couple of doors, tossing my work bag aggressively into the car, and a few curse words uttered outside of Jeremy's earshot. But my memory is a little foggy about it all (conveniently).

On my drive to work I was able to come down from my adrenaline pumping and see what was going on between us. I shot off an e-mail to him when I got to my desk: "I'm sorry I got so upset and stormed around the house this morning. I think we're both really stressed out and trying to prove to each other that we're each more stressed than the other. We haven't been focusing on Team Cashman." I gave him a couple numbers for repair men as an olive branch. We talked later that day and he apologized for his part as well.

Then last night was The Great Cover Up, for which Jeremy performed Dean Martin cover songs at the Rialto Theater with a bunch of other local artists who covered other bands. The whole thing was a benefit for medical expenses for uninsured musicians and artists in Tucson. He was performing earlier in the evening, but still past my normal bedtime. I knew he wanted me to be there, and I really wanted to be there to see him perform. It was one of those things where, yeah, getting a good night's rest for me is incredibly important right now for my health, but doing something for my spouse and that makes me so proud of him is also important for my overall satisfaction of life. So I went.

This is where I'm going to gush about him. The guys in the band all looked and sounded so sharp. Jeremy had shaved and was dressing Dean-like for the gig. They were just a class act up on stage. And then he started singing, and I couldn't help but smile a big, proud smile. What a great crooner voice! I loved it. The band sounded amazing. And then he sang one of my favorites: Memories are made of this. I get choked up if I don't just outright cry every time I hear the line "One girl, one boy, some grief, some joy, memories are made of this." The same was true last night. And I thought that would be the extent of my emotional response, but no. The best was yet to come.

It probably went un-noticed by everyone there but me, but before he began singing another song he said, "This one is for my wife, who is here tonight." And then the music began, and my heart started beating quickly. And then he sang:

Watch the sunrise on a tropic isle
See the pyramids along the Nile
Just remember darlin', all the while
You belong to me

See the market place in old Algiers
Send me photographs and souvenirs
Just remember when a dream appears
You belong to me

I'll be so alone without you
Maybe you'll be lonesome too and blue

Fly the ocean in a silver plane
See the jungle when it's wet with rain
Just remember til you're home again
You belong to me

Fly the ocean in a silver plane
See the jungle when it's wet with rain
Just remember til you're home again
You belong to me

I kid you not, as I stood there swaying back and forth to the gentle melody, my legs were quivering. It was such a declaration of love. A public declaration of love. And I'll tell you what, there ain't much more romantic to me than that, especially coming from such a private man. I might even go so far as to say I swooned a little (smile).

But there was more behind that song for me than the public declaration of love too. He and I had talked about that song, how it was one he played on his acoustic guitar for me in our backyard as we sat out there with a fire in our chiminea one morning shortly after I had gotten out of the hospital and was recovering. The line "just remember till you're home again, you belong to me," was the kicker. He played lots of songs for me when I was in the hospital about being home again. The man knows what gets me. He knows what speaks to me.

One girl, one boy, some grief, some joy: Memories are made of this.

Trying it on for size

2010-12-09T17:56:00.002-07:00

December 9, 2010

Now that I've made an appointment with Dr. T to consult about the j-pouch revision surgery, I've been living in a different mental space, preparing myself for life with an ostomy again. I am determined not to let this rock my world the way it did the first time around. You can do this Abby. You can handle it.

There were lots of things that made life with an ostomy difficult for me, one being that I never got a break from it. I could never just turn off the juices in my system and take my bag off and be free. It always had to be there, attached to my stomach, collecting bile if nothing else. It didn't take long for it to fill to a point that I could feel it bounce against my side as I walked. It was like I had a six inch long, four inch wide water balloon attached to me. Granted, I rarely let it fill up entirely before emptying it (if that happened it was usually at night when I was sleeping), but you get the picture.

Then there was the art of emptying the bag. Oh how soon I forget! It's not like you take the bag off and empty it that way. Oh no. The bag stays attached to your stomach as you unclip and then unfold the bottom of it and lean just so, so that you can empty the contents between your legs into the toilet. Without sounding too crude but wanting to give you an accurate depiction, let me just say that the scent associated with stool that has not been fully processed through one's colon carries quite the odor with it.

By far I think the hardest part of having the diverted ostomy for me was how quickly food went from my mouth to my bag. I kid you not, many a time I sat at a meal with friends or family and had not finished my meal before I began to feel the contents of my dinner begin to fill my bag. (I ate a lot slower then because I had to meticulously chew my food so I wouldn't get an obstruction.) I lost my appetite as a result. Seriously lost my appetite. I was losing around 3 pounds a week, and that was with me trying to gain weight. Hydration was hard then too. I felt faint throughout the day every day. And that was with me doing a liter of IV fluids every night at home.

I will say though, when I had my end ostomy (called an end ostomy because the part that stuck out of my stomach was the very end of my small intestine), that was not a problem. The food had further to travel and took longer to process before it reached my bag. I was actually able to get up to my pre-UC weight when I had it. If I have the revision surgery, I will have a diverted ostomy, not an end one. With a diverted ostomy, a hole is made somewhere in the middle of the length of my small intestine and pulled through a hole in my stomach to divert my stool from going through the rest of my system where other revisions have been made so those revisions can heal. Make sense?

My understanding is that one of the main risks in doing the revision surgery is that the veins (or whatever they are technically called) that supply blood to my j-pouch will not be long enough after the j-pouched is revised. The j-pouch can't function without that blood supply. If that happens, the surgery would not be successful and I could end up with a permanent end ostomy instead. I've been told the risk of that happening is low. I have heard of people in that situation whose surgeons attached the vein to the inside of the abdomen for a year or more to try to stretch it out so that the revision surgery could be completed later, though it didn't always stretch as necessary. Crazy huh?

This is where hope comes in to play for me. I am not going to live in fear of the worst happening. I'm going to hope for the best. I'm going to have faith that if the worst does happen, I will summon the strength and (intestinal) fortitude to move forward with my life. Even if the revision isn't successful and I end up with a permanent ostomy instead of a temporary one, the disease will be gone from my body. I can't help but believe that I will experience better health regardless. People with permanent ostomies are active, vibrant people. I will be one of those people, no matter what!

I know I'm writing this as though I've already decided to do the revision surgery, but I'm not 100% there yet. I'm trying the decision on for size right now. So far, it feels like the best fit of all my options. My appointment with Dr. T isn't till January 5th, so I've got a little time to check out the fit in my full length mirror.

Diary of a non-wimpy woman

2010-12-08T18:11:00.004-07:00

December 8, 2010

The psychological aspect of pain is taking its toll on me. I used to think pain was just a physical thing. It was easy to think that way when the pain I experienced was short term. A sore throat maybe, sprained ankle. Throw in a migraine here and there and that was as bad as it got. Migraines were the worst, but I knew they would end. It feels like I've been dealing with pain in one form or another for a long time now, and it's exhausting me, both physically and mentally.

If I could just figure out how to get a handle on the psychological part of it, I know it would help a lot. So what are you telling yourself about it Abby? What's so distressing about it? I tell myself that I'm not tough enough. If I were just a little tougher, none of this would bother me. It's because I'm a wimp that I'm in pain.

Boy, just writing that makes me realize how untrue it is. I've been through hell and back with pain. I have not been giving myself credit that I deserve. It makes me sad that I've been so hard on myself. I need to be more gentle with myself. I'm not a wimp. I'm a strong woman who has endured more than her fair share of pain. So maybe that needs to be my new mantra: I am not a wimp!!

It was not too late

2010-12-04T19:33:00.006-07:00

December 5, 2010

"She was dying." Dr. V's words have been stuck in my head since my appointment with him on Thursday. I knew it was serious. I felt like I was dying. I thought I was dying, I guess I just didn't realize that the doctors thought so too. Dr. V wasn't the first doctor to say that to me either. A year or so ago when I went to an appointment with my OB at the hospital, she told me that the nurses were talking about me saying, "She's the one who tried to die on us." The only time a doctor actually said something like that to me during my hospitalization was in the beginning, when Dr. S told me my situation was a "life or death" one.

On the one hand, hearing those words from Dr. V have provided a sense of relief for me. I wonder sometimes what's wrong with me? Why am I struggling so much with life now, with understanding it all? I'm having a hard time because it all happened so suddenly and because I almost lost my life. And I did lose the life of my daughter. It was just so much. It flipped me upside down and turned me inside out. Completely.

While I may have been, no, was dying, I was very aware of the life force inside me too. For those who were with me during that time, I think they would agree that life was all that was left of me. Everything else that had made up who I was before was stripped away and that life force was all that remained. It's an unreal thing to be stripped down to that point. To see the essence of what really makes me who I am as a living being, man, it's crazy. Because I'll tell ya, we do a lot of fooling ourselves about what makes us who we are.

How Harper fits into it all is still confusing to me. Were we sharing the same life force? Did she have her own little life force that she was trying to hold onto while fighting the disease too? Did my life trump hers? Why do I even spend so much time thinking about these things? Why can't I just let it be as it is? And you know, some days I can. But some days, when I'm thinking about my life and the impact I want to have, or the difference I want to make in this world, I get caught up in the game of trying to figure it all out. I get frustrated, confused, and sad. It's usually at that point that I stop myself. You don't have to understand it all to live a life of love Abby. Just keep doing your best to love. You'll figure the rest out in time. And then I'm able to let out a big sigh. Yes. Love. I can do that.

Angel Dream (Tom Petty)

I dreamed you, I saw your face
Caught my lifeline when drifting through space
I saw an angel, I saw my fate
I can only thank God it was not too late

Over mountains I floated away
Across an ocean I dreamed her name
I followed an angel down through the gates
I can only thank God it was not too late

Sing a little song of loneliness
Sing one to make me smile
Another round for everyone
I'm here for a little while

Now I'm walking this street on my own
But she's with me everywhere I go
Yeah I found an angel, I found my place
I can only thank God it was not too late
I can only thank God it was not too late
I can only thank God it was not too late

2010-12-03T05:57:00.005-07:00

December 4, 2010

Thursday morning I had an appointment with Dr. V, the surgeon who did my first two surgeries. His nurse gave me a hug when she was me in the lobby. When she was with me in the exam room she said, "Dr. V is excited to see you." It was so sweet to me.

Dr. V is an older gentleman, with white hair and a strong accent (I believe he is from Columbia?). I'll just admit up front here that I idolize him a little. I mean come on, the man performed a procedure that saved my life. So I'll be honest and say I was excited to see him too. I wanted him to see how well I am. He saw me at my very, very worst, just about every day when I was hospitalized. And while I may not be at my best ever, the difference is no doubt drastic as was apparent when his jaw dropped when he opened the exam room door (though I'm sure he was being a little dramatic too).

"Stand up and let me see you!" he said with his arms wide open. "You look wonderful! Give me a hug!" he said, which I gladly did. "So tell me how things have been going." I refreshed his memory on the different issues I had post-surgery as it was one of his colleagues who did my third surgery and followed me after that. He began telling the student who was with him about me. "She was dying. She was so sick. How much blood did you lose Abigail?" I told him I knew I had five blood transfusions and two plasma transfusions. "Yes. She was dying. That was a very bad time for you," he said with a frown on his face. He explained the course of my illness to his student, looking to me for details and confirmation as he did so.

We talked about the reason for my visit yesterday (a minor hernia that needs repair), and then as his nurse was going over paperwork with me, he picked up the phone and began dictating into the phone. I'll tell you, it's kind of crazy to hear someone talk about the worst time of one's life like that. His voice was grave as he recounted my history and I couldn't help but tune out the nurse and listen to him as I heard him say, "And then her baby died and her symptoms improved slightly, but only briefly. There have been no pregnancies since."

As we ended the appointment, he patted my leg and said, "You made my day." I smiled at him and said, "Well you know you're my hero." I have to choke back the tears when I think about it all.

A profound moment happened for me during that visit. The nurse asked me what my pain level was when she was taking my vitals. Normally, I would have said a 1 or a 2, but their little pain scale with the corresponding faces showing differing levels of discomfort was right in front of my face. Hm. I said I was probably a 4 (but it might have been higher). And then they took my blood pressure and it was high, and I usually have low blood pressure. "Wow. I wonder what that's about?" I said. "Well you're pain is at a 4, so it makes sense to me," the nurse said. Duh Abby.

Something about that little exchange stuck with me. When I tough it out, I'm really not helping myself (again, Duh Abby). Subconsciously I may think I'm somehow more pleasant to be around and so people will like me better or something, I don't know. But no. By not seriously addressing the pain I'm in, I'm hurting myself physically. And that continuing pain wears on me.

Honestly? I'm worn out from not feeling well. Most mornings if I don't just break down and cry, there is some point where I'm fighting back the tears because I'm just so weary. I'm not exaggerating to say I've had probably 3 days in the last three years where I felt good and full of energy. I tell myself I can't feel bad because things aren't as bad as they were. Like if I acknowledge that I feel bad now I'm somehow dismissing the improvement I've made. But the truth is, I don't feel well. I understand that there is a new normal for me. Believe me. I understand, but this new normal stinks. It really does.

So here's where I'm going to unabashedly complain. I'm not going to suck it up and be a trooper. I'm going to tell it like it is. I am so very tired of doing the "rectal suspension" medications (two of them) at night. Almost every night I go through this conversation in my mind: "Just do them Abby. You know they'll make you feel better. Suck it up. Just do it and take your sleeping meds and knock yourself out and you won't even think about how uncomfortable it is."

Sleep is supposed to be a time of rejuvenation, which is really hard to do when you are trying to hold 120 mL of liquid medication in your rectum the whole night through. Rarely do I make it the whole night through by the way. Sometimes I am barely able to hold it ten minutes. If I get past the initial urge to evacuate, I can usually hold it till about 2:30 or 3:00 in the morning when I get up to use the bathroom. That's if and only if I've taken meds to help me sleep.

There are nights when no matter how much I do the talk in my mind, I cannot physically make myself reach for those damn enemas. On those nights I may be able to drift off to sleep with ease, but when I wake up, I'm in pain. Pain. I try to downplay the pain too. I've been wondering lately how much having UC in that small part of my rectum affects my overall sense of well being, not just when I know it's flaring (which is anytime I'm not doing the enemas), but when it's under control too. Is the fact that my body has that disease in it making it that much harder for me to fight off other things? Because it seems that I have one health issue after another these days. Is it just that I'm getting older? Or maybe it's just that I'm emotionally worn out from it all and so the minor health issues seem huge to me? I don't know.

As I'm pondering these things, the discussion about whether to have the revision surgery to remove my remaining rectum and re-do my j-pouch so it has a bigger opening for evacuating has begun. It's on my mind all the time. I'm in constant pain and so that's what I think about.

Jeremy and I have also renewed our discussions about the surgery (or surgeries because there would be two). The discussions aren't easy for me. He tells me all the time that the decision is mine as it's my body and he'll support me no matter what. "But what if I fall in that small percentage of people who end up with a permanent ostomy? Will helping me with that be too much for you? Will you still find me attractive? Will you resent me and all the care I require?" He tries to reassure me, but my fear makes it hard for me to hear him. He tells me that he has always known we were going to get old together and that we were going to be taking care of each other down the road anyway.

But I'm afraid. It may be my body, yes, but it is our relationship. And what I do to my body greatly impacts our relationship. He's been taxed so much by all we've been through. He's the one I've turned to the most. That wouldn't change with another major surgery. This surgery would mean that for at least three months I would have another temporary ostomy. I relied on him to help me with a lot of the care of the ostomy in the past. But really, he helped me because emotionally I couldn't be left to face my intestine sticking out of my abdomen by myself. Yeah, when there were complications with my ostomy he helped because we needed four hands to deal with the leaks and such, but for the most part his help was due to my emotional needs.

I am in a different place emotionally now than I was then - thank God in heaven for that. I realize that if I have this revision surgery now, how I handle it emotionally is going to determine how it affects our marriage. And if I choose to do this, I know I can handle it. It will be stressful for us, but it doesn't have to be as stressful as it was before. I know what I'm getting into this time. I know what to expect. I also have a lot more support in the ostomy world now than I did when I was in the trenches before.

So I have a consultation appointment with Dr. T about the revision surgery, just to explore it further (again). I'm making my list of questions that we have for her. I guess we'll take it from there. One step at a time. I applaud you if you've managed to read this entire entry. Writing it sure has been helpful to me.

The funny things we hold on to

2010-11-28T07:05:00.002-07:00

November 28, 2010

My dad was here a few weeks ago for a short visit. We put him to work while he was here, helping us with a home improvement project. We worked hard, but had fun together as we completed the project. That evening, I made a barley bean soup and homemade bread for dinner. After dinner we sat in front of the fire and talked. We were all so tired. The crackling of the fire filled the sleepy silence. Jeremy dozed off on the couch. It was one of those moments that I was aware of Harper's absence and tears started to fall. I didn't want them to. I didn't want to be sad, but I miss her, especially when I'm around family. My dad loves his grandchildren, and I felt sad that my daughter was not one that I get to see bring him that joy.

As quickly as the tears started, they stopped, because a thought crossed my mind: This grief right now, this sadness? It's you feeling sorry for yourself, for what you don't have and what you can't give to your dad.

It's true. Grieving is really a selfish process. I'm not saying it's not natural. It absolutely is. And what does that say about us as humans that such a natural process is so focused on one's own self? I believe we were made that way. Yes, I'm sad for how Harper's loss has effected my family members and friends too, but if I'm being honest, the hardest part is about what's missing in my life. Maybe that's why grieiving is so hard for me sometimes too - because I think one of my core beliefs is that selfishness is wrong. So by allowing myself to grieve I'm having to do something dimatrically opposed to one of my core beliefs.

There's a balance in there somewhere too - knowing when my focus on my own loss has been enough already. It's just been really hard for me to know what's okay and what's not as a result. And I don't mean according to other people either. It's been hard for me to know just for myself what's okay. I don't know if any of this is making sense or not. I know I spend a lot of time on this blog sorting through all of this. Really, this is the first time I've ever personally grieved. It's funny, I used to think that because I have experienced episodes of major depression that I understood grief, but they are not the same. Definitely not the same. Anyway . . .

I got my haircut this weekend. I go to the Aveda Institute because it's so inexpensive and I have a really hard time spending money on things that are appearance related. (It's one of my hang-ups.) I always get tense when I get my hair cut, for two reasons really. The first is the most obvious, that inevitable question from the stylist: "So, do you have kids?" I prepare mentally for my response. What's it gonna be this time Abby? Yes, but not living? No? That's a tough one to answer? Fortunately, the young woman cutting my hair was very focused on my hair, so conversation was minimal, and that was fine by me.

The other reason haircuts are hard for me is because of my hair. I had stick straight hair my entire life, until, that is, pregnancy. Sometime during my pregnancy, the hair on the back of my head began to curl. At one point it was super curly, but has now tamed down to a crazy waviness. Hairstylists always comment on it and it's hard for me not to go into my explanation, which of course makes me think of Harper. I didn't say anything yesterday, but as the stylist commented and said she was going to blow dry out the curls, I thought, Oh don't get rid of the curl! It's one of my physical reminders of her. One that I sort of want to hold on to. One that proves that she was here and she still affects me physically.

We hold on to the funniest things, don't we?

All dogs go to heaven

2010-11-23T05:56:00.003-07:00

November 23, 2010

Yesterday, one of our extended pet-family members was put to sleep. Skeeter was 14, going on 15 years old. She joined our family around the same time as Jeremy did. I lived with her for a few months before Jeremy and I got married, when she was just a puppy. Lately, when I've had the chance to go home to visit, I've taken care to say farewell to the old queen, suspecting each time might be my last.

When I think about Harper, I don't typically think about her being in "heaven." I struggle with my faith in an afterlife. Do I want there to be a heaven? Absolutely. That would be wonderful. Do I always believe there is one? No, not always. But today as I've been thinking about Skeeter, I was comforted by the thought that she is now in heaven with my Harper (because if there is a heaven, I'm certain dogs go there too, and I don't say that flippantly).

Pets, dogs in particular, have been a huge part of my life. If you've read my blog at all you know how important Django has been to me - what a companion and comfort through some really difficult times he has been, not to mention the comic relief he provides me daily. And so when I think about Harper being in heaven, I love to think of her having Skeeter there. I picture the two of them playing together, Skeeter looking out for Harper the way I imagine Django would have done had Harper stayed with us. It's a cheesy little fantasy, I know, but it's providing me some comfort and even bringing a smile to my face in the midst of sorrow.

The state of the GI system address

2010-11-11T15:59:00.005-07:00

November 11, 2010

I know there are fellow j-pouchers and/or Ulcerative Colitis (UC) sufferers who may visit this blog from time to time, and I thought this might be a good time to give an update on my GI situation. I also know a lot of folks who have UC want to know what life may be like for them if they choose to have surgery to have their colons removed. So here's a little of what life post j-pouch has been like for me:

A little background: I was first diagnosed with UC only after I had already been hospitalized for a few days due to constant (and I mean constant) bloody diarrhea and dehydration (March of 2008). I was pregnant at the time, which complicated my course of treatment. It was apparently a freak thing that the pregnancy brought on a genetic predisposition of such a severe case so quickly. I had never had UC symptoms prior to pregnancy and my symptoms started immediately after I became pregnant.

After nearly a month of hospitalization, we lost our daughter and she was still born at five months along on April 22, 2008. My symptoms improved slightly after her death, and I was discharged home on a very high dose of oral steroids. I returned to the hospital four days later as I was getting much worse. The diagnosis of Toxic Mega Colon was mentioned, though to this day I don't know for sure if I had been given the diagnosis or not. Another course of IV medication was attempted to no avail. It was decided that my colon needed to be removed.

I had a subtotal colectomy on May 8, 2008. A small portion of my colon was left along with my rectum. The hope at the time was that that remainder would heal and would function for me. It was a calculated risk that didn't pay off. My j-pouch was created in October of 2008 and the remainder of my colon was removed at that time. My rectum was left, again a calculated risk. A PIC line was put in at that time as well and I did nightly IV fluids at home to help with hydration. My PIC line got infected at one point and I ended up hospitalized as a result. (Sidebar: As is often the case, with the disease came some horrible joint pain that once the remainder of my colon was removed left completely.)

My diverted ostomy had many problems which led to leaking stool which led to a skin infection around my stoma. I could no longer get an ostomy bag to stick to my skin due to the infection and was hospitalized. They had already completed my barium scoping to see how the j-pouch was healing and it was healing well so they decided it would be okay to do the ileostomy takedown surgery early since the skin infection was causing so many problems (December 2008).

I immediately began having a lot of pain when I had bowel movements. I had to strain and could barely get anything out of my system. After some time of trying to figure out what was going on, we realized scar tissue had been forming around the anastamosis where my small intestine and rectum had been connected. The scar tissue was essentially closing up the passage for me to be able to evacuate stool. I began doing dilations on a weekly basis to reopen the passage way (basically tearing the scar tissue open, or as I like to describe it, literally "ripping me a new one"). Because my pouch was so far up inside me, self-dilating was not a safe option, nor was it a pain-free option. I had to be consciously sedated to have the procedure done each week.

My doctors wanted me to have surgery to rectify the situation and to remove my remaining rectum which was still (and is still) actively diseased. I did not want another surgery and was not willing to give up on the dilations finally "taking." After somewhere between 10-13 dilations (I lost count), it finally took. During one of the times I was being dilated (and also scoped), a biopsy was done and I was diagnosed with pouchitis for which I was prescribed Cipro which I continue to take on a maintenance level daily.

I have had one bowel obstruction which landed me in the hospital, but which resolved itself without requiring any surgery. "At least we'll know what's happening if that kind of pain ever hits again," Jeremy and I tried to reassure each other. Apparently bowel obstructions are something that happens more frequently to j-pouchers than to you lucky colon-people (though obviously it happens to people with colons too!).

So because I still have UC in my rectum, I do two enemas each night - mesalamine and hydrocortisone to treat it. When I do them regularly, I have no problems. The thing is, it wears on me psychologically to have to do enemas every night as I'm getting all comfy and sleepy in bed, so sometimes I give myself a break and skip them. I can actually skip them for a week or so before my UC symptoms start up again. But after that, I start seeing a little blood (not much) in my stool, and I start to feel pressure (kind of like I have to go to the bathroom really bad all the time) and pain. After a couple/few days back on the enemas I'm better. So it's a balance for me of which is worse.

My GI doctor says that the Cipro I take may actually be treating the UC and not pouchitis (though I think there is some difference of opinion in the medical community as to whether Cipro helps UC or not). What I know is when I stop taking the Cipro, I get incredibly painful, explosive gas - all day long.

I have to have a pouchoscopy (a colonoscopy for people without their colons) every year to check for pre-cancerous cells. The good thing though is that I don't have to drink the colonoscopy prep beverages that you colon-people have to drink.

Because of all the straining I did when I went to the bathroom after my surgeries, I have a hernia near the top of my incision. The hernia has gotten worse over time and I am scheduled to meet with my surgeon on December 2nd to decide if something needs to be done about it or not.

At this point, I have bowel movements eight to ten times a day. Much of the time my stools are like water. Hydration is therefore a challenge for me. I can many times improve their consistency by eating certain foods and avoiding others, and by taking Immodium. I take Immodium numerous times each day, which helps. There are certain foods that many j-pouchers avoid. I eat whatever I want, but do so knowing that there may be consequences such as watery stools, "butt burn" (the name speaks for itself), and increased frequency of stools.

For the most part, I'm used to my new lifestyle. I get weary of it sometimes, yes. But other times I remind myself that I'm alive, and that's what matters.

And that's the state of my GI system to date.

2010-11-10T06:22:00.002-07:00

November 10, 2010

As the holidays are fast approaching, I decided to bulk up my coping skills and support network by attending a grief support group last night. It was a group specifically for family members who have lost a child either during pregnancy or infancy. I had gone to the group once last year at this time and decided to give it another try. I am feeling very self-conscious these days that I am still grieving. It's been two and a half years since we lost Harper, and while I know that grieving is a long process, I don't believe that people in general understand that. Thus my self-consciousness. It's not that I'm in the throws of sorrow on a daily basis (here's my self-consciousness again wanting to explain to people how normal I am - ha), it's just that the holidays are darn hard.

Because we were specifically trying to get pregnant when we got pregnant with Harper, I happen to know that we conceived her if not on Thanksgiving day (which I believe because of my meticulous charting), then on Thanksgiving weekend. Needless to say, the holiday has a whole different layer to it now. For months, no, well actually for well over a year, I was asked at every appointment when my last period was prior to getting pregnant, so of course November 12, 2008, is a date that doesn't go by without notice.

I'm not going to go into detail about my fantasies of what family life would be like during the holidays with Harper. But they're there. I thought about what it would be like to have her, just over two years old, during this time of year. I thought about that when she was growing inside me, fluttering around, my little hummingbird.

So all these thoughts and accompanying feelings have been ganging up on me a little lately, and I went to the group last night. It is SO hard to go to a support group with strangers and to open up about something so incredibly personal. It is even harder to open the wound and to hear the pain of so many other people too. I fought off feelings of hopelessness as I listened to all the heartache and loss contained in that room. But it's a place I can go where I know I will be understood. So many heads nodded in agreement and understanding with the things I said. I don't have to feel self-conscious there about grieving.

We ended the group with sharing what we were thankful for about our babies. I loved that the leader talked about our babies. I might have been seeking that out more than anything last night. That acknowledgement that Harper was my baby. It's a strange thing, but I have this feeling that because the other people in my life for the most part didn't ever get to see her or hold her or feel her move, that to them she wasn't a real person - a baby. But she was. I have to fight the urge to whip out pictures of her to show to people to prove that in fact I had a baby. I fully acknowledge that this assumption could be all in my own head, but it's there nonetheless. I've been thinking that having a memorial service for her could go a long way in helping me to acknowledge her "realness" and thereby help me heal. But I don't know . . .

Anyway. As I was saying, we ended the group with sharing what we were thankful for about our babies. My cheeks were wet with tears the entire time, so to say that I started crying then wouldn't exactly be accurate because I don't think I really stopped crying from the moment I sat down. A whole new wave of tears swept over me when I said I was thankful that I got to see what a child that Jeremy and I created together looked like, and I was thankful for the night I gave birth to her, which was the most sacred and beautiful night of my life.

I'm trying to focus on the things I'm looking forward to about the holidays: the cooking, the baking, the company, and all the fun activities, but it's a balancing act. I just need to give myself permission to let my feelings be what they are and to be authentic. It's getting better. Last year I didn't break down sobbing at the Thanksgiving table the way I did the year before that. Maybe even this year I'll be able to include Harper in a prayer of gratitude as I reflect on all the things for which I'm thankful.

The Art of Contentment

2010-11-04T05:39:00.003-07:00

November 4, 2010

A while back I was thinking about how, when I was in the hospital, I wept many, many times saying, "All I want is my life back. We had a good life. Can't we just go back in time? I just want to be home." My heart yearned to be with Jeremy and Django in the safety and comfort of home.

It dawned on me that I have that now. I have all I ever wanted. I have all that was important to me, all that I longed for when things were as bad as they could ever get (at least I hope they never get worse than that - smile). And so lately I've been focusing on contentment. I'm not just talking about being grateful. I'm talking about being content.

I take my time doing the dishes, wiping down the counters and the sink. I leave the kitchen at night all clean and orderly and I feel content. I transfer loads of laundry and fold a load of clean clothes and think I'm taking care of us. We spend a morning in the yard, hacking down dead branches, pulling weeds from the rocks, sweeping off the patio. Oh this is satisfying. I've been making larger meals on the weekends - a big pot of soup, homemade bread. We eat what we want and I freeze the rest for my work lunches. On Saturdays and Sundays we walk Django in the early morning hours. In the afternoons I take a nice long nap - without guilt because I know I've been working hard. And this is all I want. I don't need more. I don't want more. And I am so very content.

But it takes work to be content. And how funny is that? That contentment should take work? For me the work is telling myself to be still. To notice what I have. Not to pine for more. (You don't need new kitchen cabinets Abby. That won't change a thing inside you. ) Not to always be planning the next accomplishment meanwhile missing today. And also, not to dwell on the heartache of the past. I don't deny the feelings of grief when they show up. I settle in with them for a bit, knowing their stay won't be long. And when they have done their job, I open the door and send them on their way.

For now, I'm still working on the art of contentment, because I believe it's an art. But man, the outcome is a pretty amazing piece of work.

Moving forward

2010-08-31T05:49:00.002-07:00

August 31, 2010

If we lived in the days of wearing a black arm band while mourning, I believe I would be to the point where I would take my band off. There are still surprises for me once in a while. Things I didn't realize would remind me of Harper but do. For the most part though, I know what to expect and can prepare. I don't break down crying when reminded. If there is something that hits me hard, I'm able to hold onto it and process it at a later, more appropriate time. I think about her every day. Every day. But more often than not, it is with a tender sadness and awe.

I'm feeling tired of my grief. I'm tired of the self absorption that accompanies grief. I guess that's part of the process too. Part of what helps us move forward. And that's what I'm trying to do: move forward. Slowly but surely I'm doing it.

Something that happened

2010-08-18T20:58:00.004-07:00

August 18, 2010

The feelings are fading. Especially the fear. I find myself reminded of something that happened in the hospital and my entire body is no longer affected by the memory. I can talk to people about my experiences without the urgency I used to have. It's becoming something that happened. I'm not weepy any more. I'm finding a routine, a rhythm to my life that is familiar. Ah yes. I'm remembering how my life felt. I remember. But it feels like this life now is muted somehow. Faint whispers of what it once was. It's not bad. The familiarity is comforting. I still wonder though, will the colors ever be as crisp as they once were? Will excitement ever reach the level it once did? Will it always be tempered somewhat with fear or sadness?

I am not fully engaged in my life yet. I can see myself holding my arm up, keeping everything at a distance. A safe distance. I laugh at the irony now when I picture myself in the hospital struggling to get up and go to the bathroom. Go to the bathroom. That's all you have to do. Just keep going Abby. Focus on what you have to do and you can do it. What did I fight so hard for if not to LIVE and to live fully? Then for crying out loud Abby - DO IT! Live fully. Don't be afraid. Hope. Love. Dream. You can do it. I know you can. How do I know? Because I've seen you do it. I've seen you face everything you were afraid of. And you survived.

That's right. I survived. (I'm trying hard not to bust out into song. That's right. You know what I'm talking about. I know you're hearing it too. That's okay, right? It's a good song to focus on once in a while. Hope you're smiling . . .)

No guilt

2010-08-13T06:52:00.002-07:00

August 13, 2010

I had a massage last night. Oh it was so wonderful. Getting massages these days isn't just doing something luxurious. It's therapeutic for me. It's an act of showing love to this body of mine that I have so many negative feelings about. I'm trying to rebuild a foundation that has crumbled; a foundation of gratitude, trust, and care.

I'm keenly aware of the fact that if we had kids, massages would not be something I would indulge in. I have a hard enough time spending money on myself as it is, but if we had kids, no way would I be able to spend the money. I'm aware of that any time I buy a mocha or chai tea latte too. I'm aware of it as I take a two hour nap on a Saturday and/or Sunday afternoon.

I don't want kids right now. I can't say I won't want them in the future, but right now, I don't. Jeremy and I spent ten years of our married life NOT wanting kids. Before we decided to try to get pregnant with Harper, we spent a lot of time going over the pros and cons, talking about all the sacrifices we would have to make, discussing the financial ramifications, etc., etc. When I say a lot of time, I'm talking years. Even when we tried to get pregnant with Harper, we had said we would try for two months and if it didn't happen, it wasn't meant to be. Of course I got pregnant the first month.

It's a strange paradox too - grieving the loss of a child and being in a place of not wanting children. I've finally gotten to a place where I can say that I don't want a baby right now without feeling like I'm betraying Harper. I am not yet to the place where I can say "I'm happy I don't have kids." I feel like it should be okay to say that, but there is this little voice in the back of my head that says, "But if you say that then you're saying you didn't want Harper." I know, I know. That's not what that means. It just all gets so mixed up in my mind. The only reason I'm writing about this is to share with people how complicated the grief process is.

Until I get it all figured out, I'm going to allow myself to enjoy my mochas and massages. No guilt! Right?

The moments she's missing

2010-08-06T06:04:00.003-07:00

August 6, 2010

It was dusk and the sun had gone down without me realizing it, so the house was dark; no lights on yet. I timidly opened the door to his music room and walked in. He has a sleeping bag spread out on the floor for when he wants to get comfortable and really listen to an album. I sat down on the sleeping bag and then laid back and looked up at the ceiling fan. He sat down near me and crossed his legs. The new Lost Dogs CD was playing. I repositioned myself so my head was in his lap. He clicked through different songs, pointing out the things he liked about each of them. We were mostly quiet though, just listening. It wasn't a scene that I had fantasized about before, but I could picture her there with us nonetheless. She would have been laying on my stomach, following the flow of her parents' mood. She probably would have drifted off to sleep, it being her bedtime and all. He couldn't see my tears in the darkness as they slipped out the corners of my eyes. I didn't sob. I didn't weep. Just a few quick tears.

He moved to lay down next to me. "There are some moments where I can feel that she's missing," I said to him. He nodded in agreement.

She never really had a chance

2010-08-04T13:58:00.002-07:00

August 4, 2010

I've been sick the last couple of days. (I hate writing that. I hate being sick and I feel like there's always something wrong with my stupid body and I'm embarrassed to write that I'm sick, yet again.) This morning I went to the lab and had a chest x-ray done. As I was changing into the paper gown and donning a lead apron, I thought about the many, many x-rays I've had done the past few years. I thought about all that radiation that my body has been exposed to. And then I thought about Harper, and all the radiation she was exposed to. And I thought about the medications she was exposed to. And about the way she was nourished in the final weeks of her life (through TPN - chemically engineered nourishment that was pumped straight to my heart), and about how she never really had a chance. I was deluding myself the times I said out loud, "I'm leaving here with my baby and my colon."

Then it hit me. Saying "she never really had a chance," is so close to saying that this was part of the plan. This is the way my life was supposed to unfold. And before all of this happened, I used to believe that there was a purpose for things, a reason. A plan, if you will. But then when my own body turned on me and nearly killed me, when my daughter died inside me and I had to deliver her, I just couldn't believe that any more. I just couldn't. That "God" had planned for this to happen to me? No thanks. And so I've been left to sort through the why of it without the foundation that I used to rely on to explain it to me. And it has left me devastated, fearful, and frustrated.

I tell myself sometimes, You don't need to have life all figured out to keep on living it Abby. You just keep going, day after day. Do you think everyone else around you has it all figured out? No. But everyone else keeps on going too. And I marvel at how people do that. Do other people think about these things? How do they reconcile the pain? It amazes me, that we as a species keep on plugging away without having the answers, or in the very best situations, having answers built on faith that they are true.

It's funny though. I've almost come full circle in my beliefs. I'm almost to the point where I need to believe in a plan again, because living my life without knowing there is a reason is too depressing. It's kept some anger and pain at bay, but not for long. Perhaps it's time to entertain those thoughts and just accept the emotions that will come with them.

How've you been?

2010-08-02T19:12:00.002-07:00

August 2, 2010

I was at the doctor's office today, waiting for my name to be called, when a former co-worker walked in. Someone I hadn't seen in three years. Three long years. "How've you been?" he asked with a big smile on his face. "I'm doing alright," I answered. We're meeting in the doctor's office, maybe he'll think my lack of energy and enthusiasm is because I'm not feeling well.

We chit-chatted awkwardly as we both waited, and then my name was called. I was so relieved. What do I say? How do you sum up three important years in a casual conversation. You don't, right? You don't. But my world has changed. My entire world has changed. But it's left unsaid as it should be in this situation. It's just such a strange thing. To talk with someone who knew me then, right before my world fell apart, and who has no idea.

But it was okay too, not to spill myself all over the place. To remain composed. To hold within myself the most important moments of who I am. It was okay.

I will not fear today

2010-07-27T05:53:00.002-07:00

July 27, 2010

Yesterday at work I was reading through the medical records of one of my clients and hospital memories began to flood my mind. I wonder what it would be like to read through my records. How would those pages depict the most horrendous days of my life? How would they talk about Harper and her birth? I bet I could read about every time we listened to her heart beat. They must have made some notation about that. Would they have written down any comments I made during that time, little notes anywhere speaking to my state of mind or emotional wellbeing? I realized I had been holding my breath and forced myself to exhale. My heart was beating quickly. I looked out the window at the cityscape, but that's not what I saw. I saw myself in the ER on the day I thought I was going to die. I saw myself losing consciousness several times that day. I felt the humiliation I felt when my bed pan overflowed with blood and feces there beneath me in the bed. I felt the pointlessness of the fight for life because I had just lost Harper. It's been two years and I still struggle to find the courage within myself to face a life that I fear holds more pain, more loss, more heartache. It takes so much work, so much work to sort through the mess that grief made when it hijacked my thought processes. But still I soldier on. I look for the moments of ease in my life, the people who I can relax around, who understand that I'm still sorting through it all and they are okay with that. Those people have become an oasis for me. Because every day it's a struggle in my mind to make sense of my life now. I'm thankful for the moments of distraction, for laughter, for a good night's sleep without fitful dreams.

Here I sit. Finishing my cup of coffee, preparing myself for a day that I have decided will be a good one. Telling myself in my constant state of prayer that there will be goodness today. There will be goodness that I will notice and will embrace. I will not fear today.

Inception Spoiler Alert

2010-07-25T18:34:00.002-07:00

July 25, 2010

Spoiler Alert! This blog is about the movie Inception, and I do discuss the ending.

He was looking for his children. He saw them in his dreams, only he couldn't see their faces. Hm. I understand that. I've been looking for my daughter in my dreams too. And I can't find her. I desperately want to know what she looks like. I want to see her face, just once. I'd do just about anything to see it. And then the end. He got to see them, his children. Tears welled up inside me and began seeping from the corner of my eyes. How silly I felt. I don't think anyone else was crying. It wasn't exactly a crying kind of movie. But I did.

The beginning of us

2010-07-19T06:49:00.002-07:00

July 19, 2010

In a year full of dates that make my heart hurt, today is one that does quite the opposite. Fourteen years ago today, Jeremy and I went on our first date. It was the offical beginning of the story of us. We sat at our outdoor table at the Freighthouse and talked and ate. At least I ate. Jeremy barely touched his food. I thought it was because I wasn't carrying enough of the conversation so he didn't have time to eat, so I excused myself to the restroom to let him catch up. But when I came back to the table, he still had hardly touched a thing. Later I found out he was too nervous to eat.

I remember bits and pieces of our conversations that night. I talked about wanting to go to law school one day. He talked about his love of music. Ah yes! He's got passion! I remember looking at his hands and thinking how handsome they were. We walked through downtown Stillwater and then walked along the river and talked and talked. And laughed. He always made me laugh. I hadn't planned on falling in love. Really. But when I walked into my apartment that night after the date, I couldn't keep the smile off of my face. My roommates teased me, "I thought you said he was just a friend?"

That was the beginning. The beginning of us.

We just do

2010-07-12T07:00:00.002-07:00

July 12, 2010

Jeremy is a huge Tom Petty fan. We've had Mo Jo playing in our home since it was released. Jeremy is eagerly anticipating the concert he'll be attending in September with a friend in Phoenix. There is a song on Mo Jo that tugs on my heart strings every time I hear it. "I knew you'd like that song," Jeremy said the first time he played it for me. Last night was no exception.

We were driving back from an end of the weekend iced mocha run. Mo Jo was playing. That song came on. I was mesmerized by the rhythm, the lyrics, my memories. All of it. Tears started streaming down my face. "What's wrong sweetie?" he asked. "What are you thinking about?"

"Harper. And all that we've been through. It could be so different Jeremy," I sobbed and doubled over, hugging my knees to my chest. I didn't want to look at my bare legs with all their scars. They only reminded me of more pain. I wanted to hide them from myself. "Her second birthday would be coming up. When will it stop hurting? It hurts every day. I try to think about the future and make plans but then I think, what's the point?" I saw his face. His eyes were welled up. Our tears were interrupted by Django (who had gone along for the ride). He went on full alert when he saw a short, pudgy dog in our neighborhood. He started to make his muffled barking sound. Jeremy and I laughed. "So tough."

My mind wandered to one of my friends who had lost a daughter. How does she do it? How does she keep on going? And not just her. Everyone. We all have this pain and loss and grief, and we keep on going. How do we do it? We just do. We just do.

Cool relief

2010-07-08T07:00:00.004-07:00

July 8, 2010

I had moments of sweet relief this weekend. Fleeting moments, but ones I held tight to nonetheless. I went to Barnes & Noble by myself, just to browse, to dive into the beauty of the book covers, the stationary, and yes, the baking books! As I walked into the store I inhaled deeply the scent of coffee and books. A smile crept across my face. It was open mic night in the coffee shop area and a group of old hippies strummed their guitars and sang Peter, Paul & Mary songs. After perusing the gifts and greeting cards, I made a beeline for the baking books. Oh they were beautiful; pictures of scrumptious cakes and artisan breads. I poured over the recipes and made mental notes of the techniques described for getting the perfect pie crust. And then I had to force myself to walk away before I started making purchases my budget could not support. But it was a wonderful experience.

On Sunday Jeremy and I went to our HOA pool. For a while it was just the two of us there. We played in the water and laughed together. We held ourselves in the water with our legs swung over the edge of the pool and talked. And for a moment, I laid on my back and floated in the cool water and looked up at the blue sky and white clouds above me. I let the fluid silence soak me and breathed deeply. Another moment I would hold onto. A moment of relief from the anxious thoughts swarming my mind. Cool relief.

I'll get there

2010-07-02T06:48:00.003-07:00

July 2, 2010

I've been in a negative head space lately. And you know what? I'm kind of embarrassed about it. Like it's my fault or something. Like it's a character flaw or failing on my part. Geez Abby. Let it go. But here I am, having a hard time. Again.

You should be over this by now. No one's going to want to spend time with you any more. You're so negative. You're going to be one of those people who only talks about their health or their depression or their losses. One of those people that others see coming and turn to go the other way. You better be quiet about it.
I don't know why, but I've been in a lot of pain lately. All day long. I broke down sobbing on my way in to work the other day. Suck it up Abby. You've got to do this. You've got to work. Keep going. So I did. But every time I felt the pain, I just really wanted to give up. I guess I'm just tired. Plum tuckered out. I wish I knew what was causing the pain. It was the same thing a couple of weeks ago that caused me to go in and see Dr. G, and then have my pouchoscopy procedure that said everything looked fine. Then why the heck am I having these days where I'm in so much pain? I think part of the feeling of wanting to give up comes from feeling like there aren't answers. But sometimes we have to live without answers, don't we? It's hard. There's no way around it. But we all have to do it. We make sense of what we can, and try to live the rest. I guess I just need to trust that in the afterlife things will make sense to me.

I've been alone a lot lately too. That probably isn't the best thing for me. I haven't been reaching out to friends much. I've been eating more comfort foods than usual. I'm trying to keep myself exercising because I know that's good for me, but I get on the treadmill and walk for 10 minutes and think, "Ah, what's the point?"

I know! Don't you just want to shake me?! I certainly want to give myself a good kick in the pants. Snap out of it Abby! Come on already! I'll get there. I will. I always do.

Falling tears

2010-06-24T20:45:00.003-07:00

June 24, 2010

I just wanted to see her picture. To reassure myself that she wasn't a dream. As if the sadness in my heart doesn't remind me of that every day. But still, I wanted something physical. There is a particular picture of her that I love. I love it because she looks like a living baby to me. It's not that I want to fool myself that she was alive. That's not why I like it. It's that when she looks alive I can focus on her and not on the fact that she was dead. I looked at the soft skin of her shoulder and wanted desperately to kiss her. The tears dropped down my cheeks. I didn't even realize they had been building inside me but as they released I felt myself open up and relax. I let myself feel my love for her. I didn't keep it at bay. Along with the love comes the pain, but I let myself feel that too. She was a little person, I thought. Sometimes I really do feel like she was a dream and I'm almost surprised at the fact that she wasn't.

I analyzed her features. Everything about her face was Jeremy. Everything. But darn if that little girl didn't have my hands. I could almost feel her skin against my lips. But I never kissed her. I had a daughter that I never kissed. Oh that makes me ache inside.

My second favorite picture is of Jeremy holding her. You can see how tiny she was in that picture. Jeremy is smiling a sad and tired smile. And this time I noticed that his eyes were wet. I had never noticed that before. My heart broke for him; for the strength that he maintained for me, the gentility he possessed, the exhaustion he must have felt. His eyes in that picture said so much. So much. And my tears kept falling.

Pouchoscopy

2010-06-19T05:58:00.005-07:00

June 21, 2010

I had one of my frequently reocurring dreams the other night. It's one where I'm back in college. There is this time warp thing happening so that it's simultaneously the mid-90's and the present time. The time warp creates this kind of anxious confusion for me. I'm not exactly sure what I should be doing. I'm trying to settle into a dorm room in some type of hostile environment which makes settling impossible. I'm keenly aware of the fact that I need to get my mail, only I get lost trying to find my mail box and I worry that I'm going to get in trouble because there are months worth of mail waiting for me. I get lost trying to move my clothes from some unknown location to my dorm room. And then there's Jeremy. All of a sudden I realize he's not with me and so none of this can be right. And I don't know how to get to him, but I know that I need to be with him.

I hate that dream. I hate it. I wake up all anxious and feeling guilty for some reason too. I look over at Jeremy sleeping next to me. It was just a dream Abby. Just a dream. Friday morning before we left for my dilation we took Django for a walk. And as we walked, we talked about Harper. We talked about the guilt we both have felt over everything that happened. Guilt is a normal part of grief and loss. It's a part of the process that can really mess you up too. We talked to each other about how we handled our own respective guilt and reflected to each other how we viewed the other's guilt. There has been this balance we have had to find as we go through the healing process together, a balance of separateness and togetherness. There are times that we desperately need to know we are in this thing together, and other times where we need to acknowledge how individual both of our experiences are. Yesterday's conversation was a beautiful mixture of both.

As I laid on the gurney with the IV in my arm, I looked up at Jeremy standing out of the nurse's way. I saw his blond eyebrows. They always remind me of Harper. We heard a voice in the bay area next to ours. Jeremy mouthed the name of a doctor. I smiled and nodded. Dr. C. He was with us through it all. He was a fellow who worked with Dr. I. I can't see Dr. C without remembering him sitting in my room with my mom and me on the labor and delivery floor. They had already started to induce my labor. It was dark outside. He sat next to my bed with a defeated look on his face. He told me we could have another baby. I knew he said that because he wanted to make everything better. His bottom lip quivered with emotion as he talked with mom and me.

The dilation went well. I actually didn't need to be dilated. And even better than that, Dr. T said everything looked really good. She said the enemas I started in January were making a big difference for me, she could tell. She also said she eventually wanted me to have the revision surgery. (Why I don't know. She talked to Jeremy about it while I was in recovery, so I didn't to ask questions and I don't think he got into that with her.) So while this is great news, I'm still confused about all the pain I was in last week. The pain is gone now though, so I guess I'll take it as a blessing. I would have had to have the procedure done in August anyway for my annual exam, so even though the dilation wasn't necessary, the scoping served a purpose.

Thanks for your well wishes and good thoughts. That's the word for now.

It's his cheese too

2010-06-18T05:02:00.004-07:00

June 18, 2010

I have my dilation scheduled for 10:30 this morning. We have to get there an hour before for paperwork and prep. Because I have no colon, the only prep I have to do is not drink or eat for four hours before the procedure. I don't have to drink the colon prep stuff that those of you who have experienced a colonoscopy have had the pleasure of drinking. Whew. So here I am now, up at 5:00 a.m. trying to hydrate myself good and plenty for the next hour so starting my IV is easy for the nurse. The last couple of days I've been drinking more water than I usually do (which is a lot anyway) to try to stay hydrated too. They have enough problems starting IV's on me due to scar tissue that's formed on my veins from so many needles (I sound like a drug addict don't I?), dehydration is the last thing I need! I also thought I better have a cup of coffee while I can so I don't get a caffeine headache. I don't mind getting up early because I know after the procedure I'll be all drugged up and sleepy and will nap the afternoon away anyway.

My OB/GYN called me this week with the results of my lab work I did last week. She said my thyroid was normal, which was great. When it came to the results of my hormone levels she said there are three ways those results can go. One, they can show very clearly that my hormones are normal. Two, they can show that I am very clearly going through premature menopause. And three, they can be confusing and not show clearly either way. Guess which way my results went? Yep. Number three. She said if we were trying to get pregnant, which we are not, she would want to explore the results further, or if my symptoms got worse, but since neither of those things are issues for me right now, she recommended that I do what women who are going through menopause do. Which is, that I take calcium, vitamin D, and do weight bearing exercises to address the issue of bone density. Okay. No problem. I already do the exercising.

When I was at my appointment with her I had also talked to her about my migraines, which I think are hormonal. I'll be seeing a neurologist/headache specialist on the 29th (it's been ten years since I did that last), but in the meantime, I've started on progesterone pills to see if by stopping my ovulation I can decrease the migraines because I've noticed I get them the worst when I ovulate. So I've been on the pills for almost two weeks now. And I thought everything was going fine, but last night I started connecting some dots, and I'm not so sure this is going to work out for me. I think the pills are affecting my depression. Which is just crazy to me. Seriously.

Earlier this week I told Jeremy that something's been happening to my thoughts lately. Out of nowhere these really negative thoughts will pop into my head. And when I say really negative, I mean really negative. It's not like the thoughts are connected to any train of thought I'm having either. They just pop in and out. They don't stick around long, and I don't obsess about them. I know this isn't normal for me. I've also been incredibly irritable. I'm having to do a lot of self-talk to keep myself from being annoyed and lashing out about things that really don't matter at all. Come on Abby. Do you really need to rip Jeremy a new one for eating the last piece of cheese? No. You don't. It's his cheese too. Things like that all the time. I know, it sounds kind of funny. And I can get some perspective and see that these things that are happening are not me.

At first I thought maybe something was happening with my anti-depressants and so I put a call in to Dr. N (who is out of the country until November), asking him if we needed to tweak things a little maybe. I still haven't heard back from him, but after I left the message for him telling him the timeline of these symptoms, I realized that they coincided with when I started taking the progesterone. Last night I hopped on-line (God bless the internet, right?) and looked into the side effects of progesterone. Yes, I did read through them when I started them, which is why there was something in the back of my mind saying they might be the culprit. Sure enough, my symptoms were on the list of possible side effects. I'm not going to make decisions about these things without talking to my doctors, but I'm pretty certain that's what's happening.

Having an explanation is helpful. Absolutely. But last night I felt so discouraged about it all. So am I going to have to choose between the pain of migraines versus depressive thoughts? As I closed up my laptop I sat there on the couch and pictured all the chemicals in my body that all the medications I'm on produce. I've never liked the idea of taking medications. (Not that anyone likes taking medications.) But what can I do? I felt helpless and needy. But maybe I need to shift my paradigm on this. I could be grateful that there are these things that can help me. Were it not for medications I would be dead right now. Plain and simple. Or maybe I should just allow myself to be frustrated and not beat myself up for not being grateful all the time. I don't know . . .

In the meantime I'll cope by, as Dr. N would say, observing the depressive thoughts and recognizing that's what they are, and buy stocking the fridge with extra cheese.

Ugh

2010-06-15T06:44:00.003-07:00

June 15, 2010

Things have been a little rocky for me lately health-wise. The last couple of weeks I haven't felt well and this weekend they got worse. Saturday night I was in a lot pain when I went to the bathroom (which was frequently) and then for quite some time afterwards as well. Then all day Sunday too. Monday morning I got up and showered and dressed for work only to break down crying as I approached my front door, realizing that I wasn't going to be able to manage with all the pain I was in. I called in sick yesterday and pestered Dr. G's office till they got me in to see him yesterday afternoon. He said he thinks I need a dilation. I'm guessing he's right. He wrote orders for Dr. T to do a dilation ASAP. He said if she couldn't get me in right away to page the resident working with him and let him know. I'm guessing she'll be able to get me in. She's usually pretty good about that. Because he's now the Dean and only sees patients on Monday afternoons, it will be easier to get in to see her than him. I'll be calling first thing this morning to get it scheduled.

It's disappointing to have this issue creep up on me again. The pain is exhausting.

The resident that was working with Dr. G yesterday introduced himself to me when he came in the room like we had never met. Seriously? He saw me pretty regularly while I was in the hospital too. He's been seeing me for years. I never liked him. Even when I was in the hospital he would stand close to the door like he was afraid of me or something. Yesterday he never let me finish my sentence before he moved on to the next question. Not once. So annoying. It wasn't till I was up on the gurney with him palpating my abdomen that he remembered who I was. "How many times have you been admitted?" he asked. I laughed. "Hmmm . . . eight, maybe ten. I don't know." "Do you have children?" he dared to ask me. "We lost a child when all this happened in the beginning." Then he remembered. "Oh yeah. You saw Dr. I then right? You were on cyclosporine? You look different. That was a tough time." Well, at least he remembered that much. Someone seriously needs to talk to that man about his bedside manner. I don't really put much stock in what the residents say anyway. I wait till I hear things from Dr. G because I've heard him contradict what they've said too many times. But he was just outright annoying.

So anyway. I'm going to work today, pain and all. Grumpy, down mood and all. And I'm hoping to get in for my dilation by the end of the week. Cross your fingers for me. Ugh.

Away from the past

2010-06-07T05:34:00.003-07:00

June 7, 2010

"Who's your doctor?" the brunette with the baby in a carry seat sitting next to her asked the heavy set blond woman.

"Dr. C," she answered. "She's really soft spoken. Do you know her?" The brunette squinched her face and shook her head affirmatively.

"You don't like her?" the blond asked. Hmph. I know her. Soft spoken yes, but that woman was not straight with me about my choices when it came to how Harper needed to be delivered. Did I really tell her I was angry at her? I think I did. There on my hospital bed, tears flowing, I told her I was angry because I was told I had more choices than delivering my dead daughter when she had told me I did not. Let it go Abby. Let it go. Forgive. You have to forgive her and consider how things turned out a blessing. This anger is not going to do you any good. Let. It. Go.

In the exam room the nursing student began with her questions. And then she came to the one I knew she would come to. "And how many pregnancies have you had?"

"One," I said.

"And it was a live birth?" she asked looking at her paper.

"No. It was a still birth," I responded and looked at the floor.

"When was the date of your last period?" She moved on. No "I'm sorry." No eye contact. And did we really just refer to the most imporant thing in my life as "it?" I think we did. Both of us. I suppose keeping "it" impersonal is easier. Easier for who? Not for me, that's for sure.

I sat on the gurney in the paper outfit, legs dangling over the edge, and I thought about how other women answer that question. I thought about my friends who have been struggling to get pregnant and have had numerous miscarriages. They know how hard it is to answer that question too. I thought about how I used to feel so good about these appointments. I know that sounds crazy, but there used to be a part of me that walked out of the OB/GYN's office and felt like I was really taking care of myself. Now I dread it. Now I wish I could ignore it all. And so there was a part of me that was relieved when my doctor said she wanted to do tests to see if I was going through premature menopause. Thinking about my fertility is just downright painful sometimes. Yes, I'm only 35, but the nightsweats, change in my cycle, increase frequency in migraines, all those symptoms made her wonder. So we'll see.

The exam was traumatic for me. A rush of memories flooded me. When I was alone in the room again I stood to change my clothes and looked at myself in the mirror. My nose was red and my eyes were full of tears. Maybe if I wait a few minutes I won't look like I've been crying. I walked out of the office and as I waited for the elevator to arrive, I stepped into the hallway and peaked through the doors to the Labor and Delivery floor. Just through those doors is where I last saw Harper. I hesitated. Should I go down there to see the room? Part of me wanted to. But no. Not today. Besides, I doubt they would let me down there anyway. The elevator arrived and I went back to my life. Away from the hospital. Back to the present. Away from the past.

So much in a nod

2010-06-01T18:22:00.002-07:00

June 1, 2010

This morning as he was heading out the door, Jeremy gave me a mix CD he had compiled this weekend of songs about and for Harper. I put it in to listen to on my way to work, but I couldn't listen to all of it. Especially the song that he wrote that has her heartbeat in it. I had to skip that one. I remembered a time when she was still with me, when the song was new, I listened to it for hours on repeat.

The man I was sitting next to at a training today asked me if I had kids. "None living," I said. "Oh. You lost a child?" he asked. I told him I had. He said, "Me too." He told me he had a child who only lived for three days. He must have been 60 years old. He went on to say, "Oh and you were probably going along having a good day and I had to ask you that question." I smiled and reassured him that it hadn't ruined my day. It was so nice to hear someone understand how that tiny little question could send one reeling (and had done so in the past to me). "It's just a part of life for me now. Something that will always be with me." He nodded in agreement.

When I think about Harper and the love I have for her, I always end up thinking about Jeremy and the blessing he is in my life. I think about how sharing her has brought us closer to each other. And then I sometimes think about how long we will be together, and, ultimately I end up thinking about what I will do when I lose him one day (meaning when one of us dies). Isn't that horrible? But I can't help it. I get really angry sometimes when I think about how we will spend our lives together as partners only to be separated by death in the end. It just isn't fair and it doesn't make much sense to me. And then this is where I do a little self talk: Okay Abby, let's try the glass is half full approach shall we? How lucky are you that you have him to share your life with now? Enjoy what you have now.

Oh, and tonight I'm tired and not feeling well. Would that I could drift off to sleep and my little girl would come and visit me in my dreams.

Some day . . .

2010-05-27T15:45:00.001-07:00

May 27, 2010

Dear Harper,

I've been thinking about you in a new light lately. A friend of mine came over for dinner the other night and I was showing her pictures of you. She said something to me that, while I've heard it before, it really sunk in this time. She said that you gave up your little soul so that I could live. Your daddy said the same thing to me when we found out you had died, but I wasn't ready to hear that then. Part of my inability to hear it was that I felt like my illness was caused by you to begin with, (though I hated myself for feeling that way). But as I was looking at your picture, listening to my friend talk, I realized that you had just as much right to this life as I do. While you were a part of me, you were also your own being. Your dad and I used to talk about raising you with an understanding that you were your own person. You weren't "ours." You were just with us for us to take care of and teach for a couple of decades before you would want to move out on your own. And it's true. You were your own. And so perhaps it was your choice to help ease my pain. I don't know. Perhaps we were both victims of the same random tragedy. I don't know that either. But it did make me see you in a whole new light, thinking about it that way.

I think about you every day. Every day Harper. Yesterday I was walking on the treadmill and I started thinking about you. I was thinking about my uncertainty about what happens to us when we die. I'm okay with the uncertainty because I don't think knowing for sure would change how I live my life, but as I thought about you, it made me want to believe without a doubt that I would see you again. I so want to get to know you. This sort of settled feeling came over me then and I thought, yeah, I'll get to know her some day. One way or another I'll get to know you. There's something really exciting to me about that. I was going to say that you may not have had a fully developed body, but you had a huge spirit, and then I realized that you did have a fully developed body. It was just so tiny is all. Any yes, you had a fully developed spirit. And I believe that one day my spirit will recognize yours. And I will feel such completion and joy when that happens. I don't know the context for sure, but I do have a sense of certainty that it will happen.

I miss you. I get wrapped up in it sometimes, how much I miss you. You know, I like to think of you as a being who made a choice about giving up her life for me instead of being a victim of circumstance. It makes it all seem less tragic. But then I wonder if I believe those things just so I won't be sad, to settle the dissonance in my mind.

I love you sweet girl. Some day . . .
Mom

Lingering fear

2010-05-23T16:14:00.002-07:00

May 23, 2010

I napped the afternoon away yesterday, which would have been nice, except for the dream I had that woke me. My recollection of the dream started with me sitting on the edge of a hospital bed, hunched over as the doctor was about to put in an epidural. All of a sudden I realized that I didn't know what was going on. "Wait! What's happening here?" I cried out. I was alone with the doctor. "We have to take it out," she explained. Take what out? What's she talking about? There's nothing in me. There's no baby. What does she want to take out? "Listen, you have no choice here. We have to take it out." I began to sob. "I wish my husband was here," I cried as I hunched over again to let her put the epidural in. I didn't know what was going on. I kept thinking there was nothing there to take out. But just before I woke up I could see her begin to cut me open. And then I woke up.

Olfactory memories

2010-05-19T06:56:00.003-07:00

We were busying about the house Saturday morning, preparing to host a retirement party for one of my co-workers that night. I had just gone outside and started setting up chairs and tables when a scent caught my attention. I paused and sniffed around and then went back to what I was doing. But no, that scent. What was that? I walked over to our bedroom window to see if it was open. Was something coming from inside? It was a fresh scent. Clean. I was feeling something churn inside me. Maybe someone nearby was doing their laundry. Suddenly I could not rid the picture from my mind of the two nightgowns I wore when I got home from the hospital. They were the same nightgown, but one was pink and one was yellow. I was flooded with the feeling of being incredibly weak and sick. What the heck was going on? And where was that scent coming from? I went inside to investigate.

"What is that scent?" I asked Jeremy who was scrubbing out the toilet in our bathroom.

"What scent?"

"The one in the guest bathroom. What is that?"

"Oh. That's the Febreeze," he said. I walked into the bathroom and took a deep breath. Yep. That was it. Mystery solved. I went back outside, but I couldn't go back to work. I sat down on the bench by the fountain and closed my eyes. I could see it all. I could see myself in the bathroom after my surgery. I could see myself emptying my ostomy bag. The smell from the bag was horrible. They made special drops you could order from the ostomy supply companies to try to help with the smell. I didn't think they worked so well. We used a lot of Febreeze back then, apparently, though I didn't remember that until that day.

I began to sob. I went back into the bathroom where Jeremy was, my face scrunched up in sobs, "That scent took me back. I'm so thankful I don't have a bag anymore Jeremy. It was horrible. I hated it. I'm so thankful," I told him. He wrapped his arms around me and told me he knew.

Sunday morning we took Django for a walk. "I'm still prepared for you to end up with an ostomy again Abby," he said.

"I know Jeremy. I am too. But for now I'm going to enjoy the time that I don't have one." It's not something we talk about a lot. But it needs to be said from time to time. We need to prepare ourselves mentally for it so it doesn't devastate us if it happens. And it won't devastate us. I just have this feeling though, that that part of my life isn't over. Maybe that's lingering fear talking, I don't know. Maybe it's my body telling my mind something the rest of me doesn't know yet. Maybe the feeling will dwindle with time. But for now, it's where we are.

A very good place to be

2010-05-13T05:47:00.002-07:00

May 13, 2010

I've been enjoying the peace in my life lately; driving with the radio off, sitting outside in the hammock in the silence. I'm not afraid of my thoughts. I don't need to distract myself from my pain or sadness. I feel like I'm entering into a new phase in my life. A phase where I do not need to focus on me so much any more. I'm wanting to really enjoy myself. I don't think I've ever been as okay with just relaxing and enjoying things as I am right now. I find myself smiling frequently. Such a good place to be. Such a very good place to be.

2010 Take Steps for Crohn's & Colitis

2010-05-09T17:31:00.004-07:00

May 9, 2010

Yesterday evening Jeremy and I, aka "Team Cashman," completed the 2010 Take Steps for Crohn's and Colitis walk. We raised $1025 for the cause and it was with pride that I wore the visor I received as a gift for reaching the $1000 mark. I would guess there were over 100 people there walking. There was "The Swollen Colon" team, and there were the "semi-colons" who of course had a large ";" on their t-shirts. There was a group of people walking in memory of a young woman who lost her life to one of the diseases with her picture on their t-shirts. There were kids and dogs, food, and music. It was quite an event for diseases about which there isn't much public awareness. One of the most funny parts of the experience to me was seeing the signs pointing to the restrooms everywhere with "Crohn's & Colitis Foundation of America" written on them. Every sign we passed made me laugh a little harder. Okay, the game for the kids where they tossed toilet paper rolls into a toilet seat was pretty funny too.

There is nothing like the feeling that comes with doing something active to help make a change for the better in the world. Nothing like it! I said it before, but I'll say it again: Thank you so much to those of you who supported Jeremy and I with your financial contributions to this cause. Thank you!

I don't know how else to describe what I felt walking beside Jeremy other than to say it felt good. Down to the core of my being it felt good.

Gassy Gus

2010-05-07T05:34:00.002-07:00

May 7, 2010

The night sweats are making me crazy. It's my understanding that night sweats are one of the symptoms that often accompany UC, so that's what I'm attributing them to, but I think I'm going to talk to my doc about them anyway just to make sure there's nothing else going on. But man, could I just get a little break from them please? I wake up in the night with my PJs wet and cold and I go through this little debate about which action would wake me up more - to get up and change my PJs and sheets (which would mean waking Jeremy up too), or to try to go back to sleep wet and cold? If you've ever had night sweats I'm sure you understand the dilemma. Ugh.

The lack of sleep is exhausting me. When I'm tired, it feels like everything is just a little bit harder for me emotionally too. Little annoyances bother me and even worry me more than they normally would. For instance, now I know this is going to sound funny, but I can't really pass gas anymore. Well, I can, but it takes some effort and is only done when I'm in the restroom. Granted, this does remove me from any public embarrassment, but sometimes I think I would trade that risk for comfort. Gas can be mildly painful you know. Fortunately I'm in the bathroom frequently throughout the day relieving myself on a regular enough basis that the bloating that's associated doesn't get too bad. And while there may not be public embarrassment, I do have to talk myself through the fact that it's okay for me to make noises in the bathroom. For the most part I've been able to get to a place mentally where I'm okay with just letting it rip. Hey, you have to have a sense of humor about this stuff, really, or there would just be no way to deal with it.

Okay, so writing this has actually been helpful for me today. Instead of feeling frustrated and worn out about the whole gas thing, I'm kind of laughing at myself. So for that I'm thankful. Any other colonless people out there who have suggestions or share this issue, I'd love to hear from you!! (Maybe it's not a result of having no colon, maybe it's more about the active UC in my rectum, I don't know. One of those minor things I'll talk to my doc about next time I see him.)

Oh yes! And I am so pleased to tell you that Jeremy and I have raised over $1000 so far for our walk!! I cannot believe it!! What generous folks you all are! Thank you, thank you, thank you!! If you're still interested in donating, don't let the fact that we've reached our goal stop you (smile). You can donate at online.ccfa.org/goto/abbycashman and click on "make a gift." Tomorrow's the walk. I'll let you know how it goes!!

No Colon & Still Rollin'

2010-05-02T19:47:00.005-07:00

May 2, 2010

This past week Jeremy called me and told me he heard on the radio about a walk that was taking place in Tucson to help fight Crohn's and Colitis. "Do you wanna look into it? I think we should do it," he offered. So I hopped on-line and found out about the walk and signed us up right away.

On Saturday, May 8th, Jeremy and I will be doing the 2010 Take Steps for Crohn's & Colitis walk here in Tucson. So the funny thing about this, that just dawned on me today, is that the walk will be on the 2 year anniversary of the date I had my colon removed. How appropriate is that?! I can't tell you how excited I am about this. It feels so empowering first of all to be raising money that will help local patient programs and support research, but also to be doing something active, something concrete to fight against this disease that nearly took my life and really, did take the life of my daughter. I told Jeremy I was going to make a No Colon & Still Rollin' t-shirt to wear to the walk and he actually laughed. "That's the first time you've ever laughed at any of my colon jokes!" (And believe me, I've told my share of colon jokes.) Up until now, he has said he couldn't laugh. "I've seen too much to laugh Abby." But I got one laugh out of him. So maybe that means the visions and memories of the hard times are fading for him? I sure hope so.

Already people have donated more money to our walk than I anticipated. I'm deeply, deeply touched by that. If you would like to help in the cause, you can go to online.ccfa.org/goto/abbycashman and make a donation. Every little bit counts! I will for sure post pictures of the walk on my blog, so stay tuned!

(And thank you so much to those who have already given!)

A great day to be alive

2010-04-29T19:29:00.002-07:00

April 29, 2010

Today is a great day to be alive! Oh April 29th, I approach you with humor. Go back with me if you will, for just a moment to April 29, 2003. How funny is it that on that day, Jeremy and I were visiting Tucson, checking it out to see if we wanted to move here. Low and behold, I spent the early morning hours of April 29th on the hotel bathroom floor trying to sleep between bouts of puking. I even passed out there on the cold tile. Jeremy didn't realize I was sick till the morning. He heard me puking and then heard a thud. I passed out as I was puking, bounced off the toilet and fell back on the tile floor, knocking my head good and hard. And get this, where did we head? To the UMC emergency room. How do I remember this you ask? I came across an old receipt as I was organizing my paperwork a few months ago from the ER visit.

Jump forward to what was the second worst day of my life: April 29, 2008. Yep, you guessed it, I was back at the UMC emergency room, taken by ambulance because my colon was going toxic on me. The day I thought I was going to die. I won't go into detail about that day again right now. If you read my blog, you've already read about it and God knows I don't want to re-live it today.

Ah, but we're not done yet. I'm not kidding! Where was I on April 29, 2009, you ask? One guess. Yep - that's right - the UMC emergency room! No joke. I had the flu and was vomiting non-stop and was admitted overnight for dehydration.

So what is it about this date? That's just too strange, don't you think? Seriously, it makes me laugh. And so through my laughter today I have been also filled with gratitude, because I have survived April 29th! It's a great day to be alive!

Community

2010-04-26T05:47:00.002-07:00

April 26, 2010

Saturday morning Jeremy and I were at the grocery store and I spotted a familiar face. "Jeremy, that's Jim, one of the nurses from the GI lab. Remember him?"

During the period of time that I was doing my weekly dilations at the GI lab, Jim was one of the folks who almost felt like family to me. He called me by name every time he saw me. He told me once, "We all think you're the cat's meow. You have such a positive attitude with all you're going through."

Jim must live in our neighborhood as I had seen him carrying dogfood outside of Petsmart once and Jeremy and I actually pulled up next to him at a stoplight once too. But still I was surprised that he recognized me at the grocery store Saturday morning. I was still wearing my Friday make-up smudged under my eyes a bit I'm sure, a ballcap, and my run-around clothes. As we approached each other with grocery carts leading the way, he smiled and initiated the conversation.

"It's been good not to see you for a long time! How're you doing?" he asked.

I told him I was doing really well. He commented on how healthy I looked. I told him I'd be back at the clinic in August for my annual scoping so I'd see him then. He talked to Jeremy liked I wasn't there, "She must be doing good. She looks good." He said to me, "You went through some tough times there, didn't you?" I agreed, but reassured him I was doing well.

On our way home I told Jeremy, "I think Jim thinks my weekly dilations were a trial for us. Isn't that funny? I mean, they weren't pleasant, but compared to everything else I've been through, that was nothing." Jeremy reminded me that there were a couple of times that the procedure was quite painful for me. And yes, I do remember yelling once, but that's the beauty of conscious sedation drugs - you don't remember afterwards! But I suppose Jim heard my yells first hand because he was often the nurse in the room with me when the procedure was being done. So yeah, it makes sense that he would consider the dilations a trial because he didn't have the drugs to make him forget.

Seeing Jim made me feel so good on a couple of levels. One, it was good to be able to show someone who saw me in a not so good state how well I am doing now. And two, it gave me this warm feeling of belonging to a community of people who care.

Harper's Birthday

2010-04-23T05:23:00.004-07:00

April 23, 2010

The surgery that was supposed to happen on April 21, 2008, did not happen. The night of April 20th, my symptoms began to improve markedly. "If you can hold on for another 7-10 day treatment, you might not need the surgery. You might not have to put your baby at risk." So, sobbing at the thought of continuing in the pain the treatments were causing, I said I would try another round. But since they were ready to do a pre-op ultrasound in my room anyway, they went ahead and did one. And that was when we discovered that Harper's heart had stopped beating. She did not make it. Her death had provided my body some relief, which was why my symptoms had improved. What a sad twist.

I didn't want to wait to deliver her. The thought of having a dead baby inside me was more than I could handle. So on the afternoon of April 21st they began the slow process of inducing labor. Harper Lee Cashman was born around 11:20 p.m. on April 22, 2008.

On Wednesday, I found myself zoning out all day, images flashing behind my eyes. Conversations. Decisions. Exhaustion. I want to go back there. To do it again, only this time to be aware. I felt so foggy, so heavy and muddled. Everything happened so quickly. Too quickly to understand it all. My mind couldn't keep up with my emotions. Emotions that are still taking the lead, understanding that's still trying to catch up. Just stop!! Stop for one second!! Please! This is all happening too fast. I just want a second to breath.

Jeremy and I took the day off together yesterday. I didn't know what to except, but it was important to me to have one day where I commemorate my daughter. Last year we scattered her ashes on her birthday. In the morning I told Jeremy I was surprised at how well I was doing. By lunchtime I had to excuse myself from the restaurant we went to because the sobs were coming and holding them in was hurting my throat.

We talked about the details of Harper's delivery and about holding her, examining her, marveling at her. I hung on Jeremy's every word. He remembered things I had forgotten. At the time I was so sick and exhausted and emotionally on the edge, I told him I wished I could be there again and be more alert. He told me that he saw a look on my face when I held Harper that he had never seen before or since. He said that he remembered my face more than hers. He said he remembered seeing my dad hold Harper and sob violently. He started to cry. "I don't even need her to be alive Jeremy, I just wish I could hold her and look at her one more time." He said he understood.

My body remembered too. I closed my eyes and I could feel the one push it took to deliver her. I could feel her sliding out of me. I could remember all the strength it took to deliver her placenta. And I was almost startled by the thought that that was giving birth.

Since the beginning of the year I have been anticipating Harper's birthday. And every time I thought about it, I thought about a birthday cake for her. So I spent yesterday afternoon making a chocolate cake and icing from scratch for my little girl. I made the icing pink with purple polka-dots. I think she would have liked it (her daddy certainly did!).

And so I've survived another important date. There's something appropriate about the fact that she shares her birthday with Earth Day, a day for growth and thinking about the future. (She shares it with her Uncle John's birthday too!) Oh my sweet little girl . . .

A strange and beautiful thing

2010-04-20T03:01:00.003-07:00

April 20, 2010

It's 3 o'clock in the morning, April 20th, and I'm wide awake. Two years ago on April 20th I was preparing for surgery that was scheduled to take place the next day. I had decided that I'd had enough of the treatments. I couldn't handle the pain any longer. I had asked my family members to be there with me and they were all there or en route. To say I was scared wouldn't be accurate. I wasn't scared for myself at the time. I was in a state of complete acceptance. Acceptance that I might not make it. We had been here before, with surgery being scheduled, but the doctors had postponed it saying it wasn't safe. I had no understanding, really, of the ramifications of having my colon removed. None. All I knew was that I couldn't go on in the state I was in any more. I just couldn't. And I was willing to risk everything, including Harper, to get better. But I didn't believe I would get better. Deep down, I believed I was going to die.

I said "I love you" to my mom, dad, brother, and sister that night. Jeremy. Oh Jeremy was the one I was afraid to leave, not for myself, but for him. I didn't want to leave him alone. (I like to think he's lost without me - smile.) I didn't even want to let him in on the fact that I thought I wouldn't make it. I was afraid that if he knew I thought I was going to die, it would stress him out even more than I was guessing he already was (though he held it together incredibly well at the time), but I had to talk to him. I couldn't die without telling him how much I loved him, that marrying him had been the best thing I'd ever done. That he made me happy. Boy can I still see that scene. I was sitting in my wheelchair, a blanket over me, tissue in hand. Jeremy bent over so he was looking me right in the eye. He wiped my tears away as I talked.

I had the most peaceful moment I've ever had that night when I was alone trying to go to sleep. I felt like I saw the afterlife. I wasn't afraid. It sounds strange, but I'm almost jealous for that moment now. These are the things that have changed me, changed the core of my being. Knowing peace in such a physical way, and feeling loved. Oh did I feel the love. So many generous, caring friends reached out to me at that time. It's a gift really, the understanding that I have now. It has affected me in so many different ways. I got to make peace with death and then keep on living. It's a very strange thing. A strange and beautiful thing.

You know, I'm glad that I'm awake at now 3:45 in the morning thinking about these things. I needed this - to sit in the darkness that surrounds me and refocus and remember, not just the sadness and the pain, but the beauty too.

A Single Moment

2010-04-16T05:15:00.003-07:00

April 16, 2010

I don't talk about her every day. Most moms get to talk about their kids every day without hesitation. Wouldn't people think I was a little strange if I did? I don't know. Maybe. Do I think about her every day? Absolutely. Every single day I think about her, many times each day. They aren't thoughts that bring me to tears all the time. Sometimes I smile thinking about her. I see pictures of just about any of my Cashman nieces and think how much she looked like a Cashman. I look at Jeremy's eyebrows that go blond in the summer and I see her eyebrows. And the other day I thought, "I don't need to have her here with me now, but if only I could just go back and be pregnant with her for one more minute even, just to feel her inside me one more time." Really? I would give just about anything for a single moment.

Accommodation

2010-04-13T05:47:00.002-07:00

April 13, 2010

I realized that it's been a while since I sat down with pen and paper and journaled instead of typing, so that's exactly what I did the other night. I only got a few sentences in before the tears began to flow.

One date that I don't really remember, though I'm sure it's written on the pictures, is the day we had our ultrasound and found out we were having a girl. The day was supposed to be different. I was admitted to the hospital on a Monday. Our ultrasound was scheduled for that Wednesday, but because I was in the hospital the appointment was cancelled. Sometime after they finally diagnosed what was going on, but before I was transferred to UMC where they could do the cyclosporine treatment, they said, "We may as well do your level two ultrasound while you're here just to make sure everything's okay." I was so excited. Excited, but the reality of my situation had set in for me then. I had begun to harness my excitement.

My memories are a little foggy. I do remembered being worried that I wouldn't be able to hold it long enough for them to do the ultrasound as I was going to the bathroom every twenty to forty minutes at that time. I remember the room was dark and Jeremy was there with me. It was a woman who did the ultrasound. She was explaining different things to us, but I wasn't really listening. All I wanted to know was whether it was a boy or a girl. And then she showed us and told us she was 70% sure she was a girl. And I named her right there: Harper Lee Cashman. I knew Jeremy wasn't going to argue with me about names, not now. We had just seen a performance of To Kill A Mockingbird a few weeks before. I was reading a biography on Nelle Harper Lee and loved what I read about her. So Harper Lee Cashman it was.

As I sat with my pen and journal I began to sob. Jeremy came and sat beside me. He grabbed some tissue and wiped the tears from my cheeks. I burried my face in his chest and sobbed. "I wanted her," I said.

"I know you did Abby."

More tears. "I tried. I tried," but I couldn't finish the sentence. No matter what happiness comes my way, for the rest of my life she will be missing and there will always be sadness that she is not with me. Always. I am helpless to change that. I will accommodate this sadness. It's a part of me now. It always will be.

The Mountain Top

2010-04-10T05:48:00.003-07:00

April 10, 2010

I got off work at 10 a.m. on Friday, so Jeremy drove me in in the morning and then picked me up after I was done so we could head to the Tucson Mountains right away and go for a hike. I have been a little irritable lately (Jeremy might say more than a little), which of course makes Jeremy a little edgy. So when we started off on the trail, we were both a little out of sorts. Jeremy brusquely fidgeted with his camel pack that he thought was beginning to leak, frustrated that it was dripping on him. I couldn't find my hat that I left at the office, which frustrated both of us. But by the time we had climbed the first major incline, we were able to pound out those frustrations and ease into the beauty that surrounded us.

Something happens to us when we're out there. Nothing but nature, maybe a few kind folks along the way (hikers are usually so polite and happy). And it's just the two of us. For three and half hours, just the two of us and the warmth of the sun. It didn't take long before I could feel the endorphins flowing, "Man, I think I'm getting a little hiker's high," I told him. And the conversations have their own life too. At the beginning of the hike we're usually catching each other up on the little tidbits of the week that have escaped us till now. Always we talk about the marvels we encounter on the way, scenes so foreign to two Midwest kids. And those comments of course lead us to pondering how we ended up in Tucson and what our life has been like since we got here (7 years ago this September).

And then there are the random thoughts that we share and expound on because, well, we have the time and really, the mental space to do so too. Times like these we do a fair amount of processing our hospital experience. Things we need to remember, new takes on things that happened. I still find myself saying, "Really? I didn't know that," when he shares something, or "I don't remember that." We sort through our respective faiths, ponder the troublesome doctrines. We help each other navigate relationships with other people. And of course, we talk about the future.

As we approached the top of Wasson Peak, I realized the last time I remembered making it to the top was in March of 2007. "Really? It's been that long since you've been here?" he asked. It was the last time I could remember. We tried the hike this past fall, but I was in too much pain and couldn't shake the constant feeling of having to go to the bathroom. But not this time. Not since my January change in medications have I had that problem. "It must mean a lot to you when you accomplish something you haven't done since before the hospitalization," he said. And it does. It means a lot. It always surprises me too, because sometimes they are things that I had given up on being able to ever do again. So it was that I felt a sense of personal triumph at making it to the top of Wasson Peak (and in near record time I might add!).

Imprints on my heart

2010-04-06T05:46:00.003-07:00

April 6, 2010

"Here are Harper's little hand and feet prints," I said as I handed over the little laminated card I carried in my billfold of my daughter's real-to-life sized prints. I didn't know for sure how my grandparents would react. I know that their generation is different than mine. I understand that. I know that women didn't talk about miscarriages or stillbirths openly. And grieving something like that? I'm assuming that grieving such a loss was a very private thing and not shared with many, if any at all. So I was surprised when I saw my grandmother's eyes well up with tears, "I'm sorry this happened to you," she whispered to me. And then I handed the card to Grandpa and saw him brush more than one tear away from his eyes.

I have to remind myself, she wasn't all mine. She felt like it. She felt like she was this tiny thing that only I experienced. But she was their family too. She was their third great-grandchild. They saw me when I was pregnant, when I was sick, the day before I went into the hospital. They heard the song Jeremy wrote with her mighty heartbeat in the background. They marveled at her before she was born.

She wasn't just mine. She was a part of my family, my very loving family.

A World Without Love

2010-04-02T16:22:00.002-07:00

April 2, 2010

Before I had ever experienced the loss of a loved one, I thought it would be like it is in the movies. How silly is that? I thought that I would feel the person's presence with me everywhere I went. Much to my shagrin, it hasn't happened that way. At first I thought something was wrong with me. I really did. Wasn't something mystical supposed to happen? But there was nothing but emptiness and aching.

I started reading a new novel, Blue Water (A. Manette Ansay). Now, don't think I'm masochistic here of anything, but it's about a couple whose only son was killed in a car accident by a friend of theirs. Well, it's really more about their healing from the tragedy. Anyway, in the book the main character talks about the very thing I was just writing about. About how she expected magic to happen so she would know her son was still with her, but that the magic never happened. It was oddly comforting to me to know that this character in a novel was processesing some of the same things I had. It really took me aback to read that. It was like I was reading my own words.

The same day I read that section of the book, I decided I wanted to get out and go for a nice long walk. I strapped my camel pack on my back, grabbed my MP3 player, laced up my tennies, and headed out the door. I wanted to get to The San Xavier Mission. The sun was shining and the temperature was just perfect. It was a beautiful day for a walk. There were lots of other walkers out too, heading to the Mission on their own private pilgrimages. Two men were carrying four foot crosses as they made the trek.

There's a small hill next to the Mission with a shrine a little more than midway to the top. Apparently in 1852 there was a sighting of the Virgin Mary at that spot. That was where I was headed before I turned around to go back home. When I got to the spot, I looked out over the view of Tucson spread below me like a picnic blanket. And then I sat next to the shrine for a few minutes. For a brief time, I was the only one there. The shrine is embedded into the side of the hill with a fence protecting a statue of Mary. All along the fence were letters that people had tied to it, flowers, even pictures of people. One picture in particular caught my eye. A young man in a hospital bed.

Do I believe that spot is particularly magical? No. I don't. I don't think God responds to prayers (if I believe he responds to prayers at all) because of where they are prayed. That didn't keep me from praying for friends of mine who are going through hard times right now though. But what do I pray for for them? Can I really ask God to take away their hardships? Can I ask God for a perfect world? I didn't just pray for the illnesses and heartache to go away. I hope that doesn't sound bad. What I prayed for was the strength to face whatever comes their way, for their spirits to open to the goodness and love that is available to them, for comfort, and for peace.

I realized that I really don't want to live in a perfect world. I wouldn't know love if I did not know disease. I wouldn't. It's that simple. And for me, there's no point in living without love.

Daddy's girl

2010-03-27T14:21:00.002-07:00

March 27, 2010

Jeremy is a creature of habit. He's not big on change, not big at all. Sometimes, particularly the times that I'm wanting to shake things up a little, I find that trait a little irritating. Until I remember that I am one of those things in his life that he will never change. Then my heart softens.

One of the things that Jeremy loves to do is to hike. But it's not just hiking, it's hiking up to Wasson Peak, the tallest point in the Tucson Mountains, the range that borders the western side of the city. He hikes the same trail almost every time. He loves that in the familiarity of it he still sees new and different things. He's been trying his best to do the hike once a week. It's about a three to four hour hike. The view at the top is breathtaking. The view at the top looks out over the valley where we scattered Harper's ashes. Jeremy did that hike yesterday and we talked about it over dinner last night.

I usually ask him what albums he listened to during his hike. He usually makes it through three and maybe part of a fourth. He's intentional about what he takes with him. Last night he told me about the wildflowers that are in bloom right now, how aromatic it was. And then his eyes welled up with tears. He told me how he thinks of her when he's up there, at the top. How he feels like he's her guardian, watching over her. "You are her guardian. You're her daddy," I said. And I felt myself pull back. I wanted to reach across the table and touch his hand, but I didn't. I wanted to tell him all the thoughts I had about him being Harper's daddy, but I didn't. Instead I sat and listened to him talk about what it felt like for him, quickly wiping the tears away from his eyes as he spoke, his bottom lip quivering. Just listen Abby. This isn't about you. This is about Jeremy and his daughter. Don't intrude. Just listen.

And so I listened. I felt my heart open up in a way I can't explain. All this warmth started radiating inside me. And was that joy I felt? Joy? Really? I think it was. I held tight to every word he was said. This was a moment I had thought about. In my fantasies, it was supposed to play out differently, but here it was nonetheless, in it's tragic, mixed up way. I had waited for this moment. Before we lost Harper, the fantasies had been of me sitting in bed next to him at night, listening to him tell me about some adventure the two of them had gone on together. Hearing the adoration in his voice. Sensing the protection for his little girl, the pride. And in my fantasies, I didn't mind being the outsider observing the bond the two of them were forming. I wanted Harper to be a daddy's girl. And that's what it felt like last night. That's why I pulled away. I let them have their moment. Their father-daughter moment.

The Body Remembers

2010-03-26T05:47:00.002-07:00

March 26, 2010

Last Friday after work I cashed in on my birthday gift certificate from Jeremy for an hour long massage at The Lotus Center. As I lay there on the table, I started to worry, Should I explain all the scars on my legs to her? I did explain the bruises on my arms from the shots I got during my recent hospital stint. I didn't want her to think I was being abused (or that I was an IV drug user!). No Abby, just relax. I'm sure she sees scars all the time. This isn't about what happened. This is about taking care of yourself now. Just relax. So I did. I relaxed, but, silly as this sounds, it took a little work to relax. At one point I got kind of choked up thinking about all my poor body has been through and how good it felt to do something kind to it. So after the massage as I was leaving, I decided to schedule an appointment for another massage next month. Time to shift the balance on the scales for my body!

Since then I've been thinking a lot about my body. I feel so disconnected from it sometimes. I realize how little control I have over it, not just with my health issues, but with aging too. Sometimes I feel like it's just this shell I've been given to carry me around in this world. But other times I feel incredibly connected to my body physically. I feel grateful for all that it does for me, the pleasures it can bring me, the places it takes me. I think this is one of those areas that I need to find some balance between the connected and disconnected feelings. Maybe. Maybe this is exactly where I should be.

I have had two very strong body memories this past week. Strangest thing. One was when I was talking with one of my closest friends who is pregnant. I was asking her if she had felt the baby move yet. And then I told her about feeling Harper move for the first time when I was 16 weeks pregnant. "It was like my heart was racing, only in my stomach," I told her, a smile immediately on my face as I remembered. And I could feel her then. I could feel Harper fluttering away in my stomach as I told her. And then I began crying. "I smiled every time I felt her move," I said. It was a beautiful thing.

I have another friend who recently had her colon removed and then just two weeks ago had her j-pouch construction surgery. She's been having a hard time since then, problems that I had too at that stage of the game. That's when my bag leaked all the time and I got a skin infection around my stoma and was hospitalized again. My skin was so infected I couldn't keep a bag attached to me. I stopped eating as much as possible. It was horrible. And she's dealing with all that now. I called her yesterday to listen and help if at all possible. When I hung up the phone, I felt my stoma begin to output. My hand instinctively went to the side of my abdomen to feel it, only there was no colostomy any more. It was the strangest thing. A phantom colostomy. Wow. I had actually experienced that phantom colostomy for a week or so after I had my takedown surgery (the surgery where my colostomy was taken down and I was totally reconnected and sewn back up), but that was over a year ago.

Who says the body doesn't remember? It sure does. Boy does the body remember.

Happy Anniversary to Me!

2010-03-24T05:30:00.003-07:00

March 24, 2010

Today is one of those significant anniversaries for me. March 24, 2008, the day I was hospitalized. The beginning of events that would change my life forever.

I had a follow-up appointment with Dr. G (my GI) on Monday. He looked at the CT scan results from my recent hospitalization and said that I did in fact have an obstruction. That's what caused all that pain. He said they didn't know what caused it, could have been an adhesion, inflammation, or something I ate. If it was an adhesion or inflammation it could happen again. Well, I guess if it was something I ate it could happen again, but I honestly don't think that's what it was. Anyway, it resolved itself and all is well. In fact, all is better than well. Dr. G asked me if I wanted to come back to see him in six months. I clapped my hands and said, "Yes!" SIX MONTHS!! I haven't gone that long without seeing him in two years. I got all choked up when I scheduled the appointment on my way out.

I told Jeremy Dr. G said it was an obstruction. "Huh. Your first obstruction." The possibility of obstructions comes with the territory when you have a j-pouch. While the pain was right up there with the worst I've experienced (a 10 out of 10 on the pain scale - and I have a pretty high tolerance), it's still good to know if it happens again that's what it will be like.

A while back I decided I wanted to start giving back. I'm feeling good, I'm able bodied - time to do some volunteering, but I wanted to find something to do that I felt passionately about. I decided the Ronald McDonald House would be a good fit. I could give back to families and children who were dealing with major medical issues, but I didn't have to be in the hospital setting. Perfect. So last night I went to an orientation at the Ronald McDonald House. While we were going through a tour of the house we met a few of the families staying there. We passed one pregnant woman in the hallway. She spoke briefly with one of the staff and thanked her a couple of times. The staff woman had tears in her eyes and said to a couple of us walking near her, "It always amazes me how these people who are going through some of the most difficult times are so thankful for everything." I knew exactly what she was talking about. When I was in the hospital I thanked everybody for everything all the time. It got exhausting to be honest with you. But people were doing things for me all day long, and quite unglamorous things at that. Things that I couldn't do for myself. How could I not say thank you all day long?

On my drive home I thought about Harper. I wondered if emotionally I would be able to this volunteer work or not. Is it going to bring up too much stuff for me? Have I healed enough? Or is that exactly why I need to do it? It's no longer about me. I can understand much of what these people are going through. Isn't it time to give back to them, even if it's hard for me? That's what sacrifice is, right?

I got home around 8:00 p.m. after the orientation and there was a beautiful bouquet of flowers sitting on my welcome mat from my dad and his wife. A little bit of sunshine just when I needed it!! I'm not going to view today's anniversary as a sad occasion. Today I'm alive. I'm here and I'm feeling good! So happy anniversary to me!! I survived!

It is what it is

2010-03-21T07:57:00.004-07:00

March 21, 2010

It is what it is. I've been hearing people say that a lot lately. I think it's become one of those generational catch phrases, although grammatically speaking I realize it's a sentence, not a phrase (smile).

Last night we were driving home from a party, Jeremy was playing a new Freedy Johnston song for me, and my mind started drifting. With the dark skies engulfing me, no visual distractions but the stars, it was easy to go to contemplative places.

I always think about her on our way home from parties and get togethers. I didn't realize she was so much a part of those daydreams in my mind, but she was. I know I thought about the fact that we would probably need a new car, a four door instead of two door, once she was born. I guess I must have visualized getting her in and out and buckling her in more times than I realized. And so it was that I began thinking about her last night. The should have been thoughts. Some of my friends who were pregnant at the same time and shortly after me were at the party. They were buckling their little ones into their car seats on their way home from the party. I had held one of them just an hour earlier, kissed his chubby baby cheeks, smelled his hair as he snuggled his head into my neck, swaying back and forth instinctively as I held him. I didn't turn to look at my empty back seat on the way home. I knew it was empty.

"Did you read my blog about my dream the other night?" I asked him.

"Yeah, I did," he said as he reached over and put his hand on my knee.

"I wanted to see her in my dream. I was excited because I thought I was going to get to see her. Did I say her name out loud?" I asked. The tears welled up in my eyes, one blink away from rolling down my cheek. "I thought I was talking in my sleep."

I didn't cry. I start to think, my life could be different, and then I stop myself. Of course my life could be different. It could be different in many ways. I could be dead. I could have gotten accepted into that school in South Africa and never have ended up marrying Jeremy. I could have gone to law school and be in some totally different place in my life. Things happen. Good things happen, bad things happen. It's the randomness of life. I don't believe things happen for a reason. Telling me that goes nowhere with me. They don't happen for a reason - we choose to make good or bad from the things that happen. We choose. I truly believe that. I'm doing my best to choose to let my experiences shape me into a better person, with a deeper understanding of comfort, love, goodness, gratitude, grace, and forgiveness. And it takes work. It takes serious work to do that. This blog has helped me do that. It's helped me challenge the choices I'm making in how I view my world.

And so now, whenever I start with the my life could be different thoughts, I switch it up to, Oh Abby, you know, it is what it is. It is what it is. I think they call that acceptance, don't they?

Am I Dreaming?

2010-03-16T17:50:00.003-07:00

March 16, 2010

Where's my locker? I think I have to go through the library to get there, but I can't seem to find the library. "Excuse me? Can you tell me how to get to the library?" I could see it, but I couldn't get there. They were building a wall where the staircase used to be so I couldn't get there. I couldn't get there. So I stood still. And suddenly, before me was a huge water slide, big enough it would have filled a football stadium. It was dark. I couldn't see very well, but I saw other people jumping down the water slide, fully clothed. I looked around me. Well, if I'm wet when I get there it's their fault. They're the ones who built the wall. So I plugged my nose and jumped in the water. I slid in the darkness, swooshing up the sides of the tunnel. I was terrified. When I got to the bottom, another obstacle was before me. I was in a life-sized pinball machine. Okay, okay. I get it. I can do this. This could be fun. I raced around through the machine. Speed. Speed. I felt speed. And then terror. Everything went dark and there were faces and hands reaching out for me. Wait a minute. I'm dreaming. I'm dreaming this. I don't have to be scared. If I'm dreaming this, then I can control it. So what do I want? What do I want to dream about? I want Harper. Maybe she'll come to me in my dream. So I tried. I tried to see her through the yellow light. I tried to spot her in the faces swirling around me on the street. I saw a little girl with loose brown curls framing her face and my heart quickened, but it wasn't her. "Harper?" I could feel myself calling out her name. Am I saying her name out loud? Can people hear me? Am I talking in my sleep? "Harper Lee Cashman?" I called again. I was calling her name out. And I couldn't tell if I was awake or asleep.

I Think We Can

2010-03-15T04:54:00.003-07:00

March 15, 2010

"I'm so angry."

"At me?" he asked.

"No. Not at you. I'm angry at being sick, that we lost a weekend because of it." And I was angry. I was so angry I wanted to ball up my fists and stomp my feet like a two year old throwing a tantrum. I did not want to be that woman that Jeremy looked at across the room sitting in a hospital bed. I did not want to be the woman whose hand he held when they started the IV. I don't want to be her any more. I don't, I don't, I don't!

Just when I was feeling good - feeling really good. Just when we were moving past those roles of sick wife and strong husband. Ahhhhhh!

I guess the good thing is we're bouncing back quickly. And maybe that's all I can hope for any more. Because of my history, when things like gut pain, or diarrhea or vomitting happen, the doctors are going to respond differently than they might otherwise, as are Jeremy and I. As it should be. This is my reality now.

When we were sitting in the ER waiting room waiting to be called to triage, I saw a woman come walking out with her leg in a cast. I chuckled and thought to myself, Remember when you used to think the hospital and emergency room were only for things like stitches and broken bones? Remember when you had no idea about real illnesses? Remember naivity? Remember when ignorance was bliss?

The physical recovery from a short hospital stint like this is just a couple of days for me. I'm hoping that the emotional recovery is shortening as well. That Jeremy and I can get back to seeing each other for who we are and not for who we were fairly quickly. I think we can. I think we can.

Life's Rich Pageant

2010-03-14T09:31:00.003-07:00

March 14, 2010

Friday night as I sat down to begin working on my taxes, my gut started hurting. Probably just something I ate, I thought. But then as the evening wore on, the pain got worse and more frequent. Sharps pains in my stomach, followed by goose flesh all over. I got a little freaked out, but decided I'd tough it out through the night. Jeremy got home late from work. I told him, and then he observed me double over in pain when the pain hit. Maybe we should go in Abby. I started to cry. I didn't want to go to the ER. I didn't want to be sick. I just wanted to enjoy my weekend at home. I told him if I wasn't better in the morning, or if any other symptoms started along with the pain, we would go in.

Around noon on Saturday I realized that pain was pretty horrible and that it would be wisest if I had it checked out. I hadn't experienced this feeling before. The closest thing was what I was experiencing just before I was hospitalized when all this started, and that scared me. So off we went.

As we drove towards UMC, Jeremy gave me his hand and said, "Team Cashman." His way of telling me we're in this together. "I think you signed up for the wrong team babycakes," I said half crying, half laughing, doubled over in pain. "No. We're in this for the long haul Abby. This is all a part of life's rich pageant."

We sat in the ER for an hour. Bouts of pain would come over me, bringing me to tears as I moaned and grabbed at my stomach. When I got to the triage they got me into a room and started me on morphine and fluids right away. They admitted me. After preliminary labs showed just that my white blood cell count was a little high, they started me on IV antibiotics. All my other labs came back negative, so they had me drink the lovely berry flavored barium beverage and prepped me for a CT scan of my abdomen.

This morning they told me my bowels looked full like they might if I had an obstruction, but they could not see anything that was actually obstructing them. One doctor said maybe my stricture was acting up and I needed dilated again. Apparently there were also some lymph nodes in my bowels that were enlarged, which meant there was some inflammation too. They don't know for sure if that's what was causing my pain, or if I just had a virus. Whatever the case may be, I'm feeling much better today. They are having my surgeon's team track me. I haven't been allowed to eat, but they're letting me start fluids and work my way up to solid food today. If I can tolerate food, they will probably let me go home this evening. My stools have been watery, so they're keeping me on IV fluids and wanting to make sure that's gotten a little better before they send me home too. They don't want me to go home just to get dehydrated and come back again.

All in all I think I'm handling this pretty well. I panicked at first. I was scared and didn't want to be at the hospital. It's not as traumatizing as I feared it would be. I tell myself that being here doesn't mean all kinds of bad things are going to happen to me. It doesn't have to mean what it once meant to me.

So here I sit, in my hospital bed in a room I've been in before. Jeremy's reading a book. I'm ever so thankful for the distraction my laptop can provide, killing time hoping I get to go home soon. I'll keep you posted.

We'll get there

2010-03-12T05:49:00.004-07:00

March 12, 2010

The past week, Jeremy and I have not had much time together, and the time that we have had has not really been quality time. It's been recovering from not feeling well or being exhausted. And that's all good. I understand that. But it's time to reconnect. So yesterday I asked him if he would meet me at the B-Line for dinner after work. As I headed over to the restaurant from my office, I found myself getting all excited to see him. There was something about meeting him somewhere instead of just going home that made it all feel so date-like. Know what I mean?

Earlier this week I was at home waiting for Jeremy to get home and I found myself worrying. He was just a few minutes late, but my mind started wandering. What if he's been in an accident? Should I call to make sure he's okay? No, Abby, relax. He's not that late. He'll be here. That scenario has been happening to me more and more lately, where I find myself starting to panic (just a little) about something happening to him.

He's my partner, and I need him. I was thinking about that on my way home from dinner last night. I need him. I felt like such a weakling for a moment for needing someone so much and then I thought, Forget that! We're human beings. We're social creatures. We all NEED people. And then I felt incredibly lucky for needing him. We've been through so much together. There will never be anyone who could ever take his place.

My in-laws celebrated their 53rd wedding anniversary this week. They've got 40 years on Jeremy and me, but we'll get there. We'll get there.

Cancelled Ticket

2010-03-11T06:01:00.002-07:00

March 11, 2010

Just a small memory, following me around like a lost puppy dog these days. I think it's so vivid in my mind because it was a moment of acknowledgement.

I was sitting up in my hospital bed, recovering from one of my daily meltdowns, piles of used tissue beside me on my bedside table. No sooner had I hung up the phone with my mom, telling her I didn't think Harper was going to make it, that I was worried I was going to have to make a tough decision about her, and the phone rang again. It was my sister in her most chipper voice. "I think we need to start talking about your baby shower!" She was trying to cheer me up. She was trying to give me hope. I knew that. But I couldn't. I just couldn't. And I broke down sobbing telling her that. That's when I knew. No. I hadn't lost Harper yet, but the reality of the situation was smacking me in the face. Harper wasn't going to make it.

Ah yes, the airline ticket to the baby shower . . . That was one of those concrete, post-death issues that had to be dealt with. I had already purchased my airline ticket to the baby shower at my sister's. And after I lost Harper, I had to cancel it. Instead the ticket was used to go be with my mom on the weekend that would have been Harper's due date. A weekend of tears and pain, and a weekend of healing.

Thirty-five and Still Alive!

2010-03-06T08:12:00.002-07:00

March 6, 2010

I turned 35 this week. Life is so good right now. I feel content. I'm at peace. And I realized that all the other things I've wanted for my life in the past really don't matter if I can be at peace. I am so thankful.

The haunting

2010-03-02T05:48:00.002-07:00

March 2, 2010

Is it okay for me to be happy? I know that's a strange question to ask, but it's been rolling around in my head a lot lately. Of course Abby. Duh. Of course it's okay to be happy. Then why am I having such a hard time allowing it to be?

How can you be happy without your daughter? You must not have loved her. You must not have wanted her. How can you be at peace now? Prove it. Prove that you wanted her. Have a baby, adopt a baby. Show everyone that you will do everything in your power to have a child. Because unless that's the case, you must not have really wanted her. But I did! I did do everything in my power for Harper. I almost lost my life in the process. But you and I both know you had reached a point where you didn't care anymore. You didn't want to think about her. In fact, you resented her. You only cared about yourself. You wanted to be out of pain and you were willing to risk her life for your own. What kind of mother is that? Yes, but remember too that even after I reached that point, when they came to me and said if I could hold on for another seven to ten day cycle of treatment I might be able to save her. And what did I say? I said I would hold on! I said I would hold on knowing the pain I would be in. Knowing I had no more life in me and that I would have to rely on Jeremy and my family to pull me through each day, but I was willing to continue the fight. But does that really matter? There was a point where you were willing to give her up for yourself. It will haunt me. That moment will haunt me.

God was gracious with me that things turned out the way they did. I truly believe that. There is no longer black and white in my life. I can only ever do my best to sort through the gray and hope and pray that God will be gracious with me in the end. I pray he's more gracious with me than I am with myself.

Contentment

2010-02-28T09:50:00.002-07:00

February 28, 2010

It's quiet this morning, the kind of quiet I drink in like water. It's been raining, so there is no guilt in snuggling up with a blanket in front of the fire finishing the last chapters my book that I'm sad to see end. Jeremy made waffles for us for breakfast. The sweetness of them balanced the bitterness of my decaf coffee perfectly. It's unusual for our home to be quiet. There's usually music coming from a number of different places, sometimes all at once. But this morning it was quiet. The perfect time to contemplate things.

But you know, instead of dissecting everything, right now I'm just going to enjoy what's going on around me. My husband is napping on the couch beside me, my ever-loyal dog is napping on the floor beneath me. The rain still falls. And I am content.

The feeling I thought I'd forgotten

2010-02-23T05:47:00.004-07:00

February 23, 2010

"Here comes the feeling you thought you'd forgotten." The lyrics to a song I stumbled upon came to mind last night as I stood in line at the grocery store looking at my food on the belt. Huh. Look at that. Now this feels like me.

In April of 2004 I was out for a run with Django when a stray pit bull came flying across the street and chomped down on Django's face. I kicked and screamed at the dog. My vision became tunnel. I saw nothing but Django. I heard nothing but Django crying. It was horrible. Somehow Django got away and ran toward home. A neighbor yelled at the pit bull and ran after him to scare him away. Django needed stitches on his face and his legs. It was that weekend I made the decision to quit eating meat. Something about the violence of the incident together with my love for Django pushed me over the edge into the decision I had been debating about for some time. And that was it for meat.

Four years later when I was in the hospital, desperately needing protein, I began eating meat again. Okay, it started with beef broth, and then beef gravy on my mashed potatoes, but animal products nonetheless. I struggled with my nourishment for some time. And then after my colon was removed and I had my colostomy, there were so many food restrictions (no NUTS to name one) that I decided it was just easier to continue on eating meat. It's taken me some time to be comfortable eating again. But I think I'm finally there. I still get a little nervous and am careful about when I eat a salad for lunch or when to eat my fruit for the day, but all in all I feel like myself again. And so it was that I decided this past weekend to begin back on my vegetarian lifestyle. No more meat. No more leather. No more animal products in my food. So long Skittles, Yoplait, Starburst, marshmallows . . . ahhh . . . so long sweet treats.

And yesterday as I stocked up on my vegetarian staples at the grocery store, I sighed inside. Yes! This is ME! What a good feeling. The feeling I thought I'd forgotten.

She alone is my mother

2010-02-20T05:36:00.003-07:00

February 20, 2010

Jeremy and I are visiting some of my family right now, so I'm getting to spend some time with my mom. "This is the first time in two years that I've seen you healthy Abby," she said as she hugged me. It's true. And I'm revelling in it. But there have been moments of sadness and sweet reflection too.

"Harper should be here with us. We should be loading and unloading a stroller from the back of the car," she said, tears welling up in her eyes as we were out doing a little shopping. Yes. Thank you. Thank you for being another person who misses her. Thank you for telling me you miss her and think about her. I'm not alone.

And then I listened to her, my mother, talk about how happy she was I am healthy now. But I wasn't just listening to mom. I was listening to a mother talk about her daughter. She began sobbing telling me how scared she was for so long that I wasn't going to make it. She was scared for my physical being, that I was going to die, and scared for my spirit, that I would lose the will to live. As I laid in bed in the early hours of this morning, I pictured scenes she had witnessed and saw for the first time the frailty that caused her so much fear - saw her through her eyes, a mother's eyes. A mother's eyes who could do little more than watch as her daughter struggled in the hospital to make it to the bathroom. Who was there in the room when her daughter gave birth to her dead granddaughter. Who helped steady her daughter as she took her first slow and weak steps in recovery. Who was there the first time the colostomy bag was changed and saw her daughter laying in bed with part of her intestine sticking out of her stomach, cleaning up stool as it spewed out onto her stomach. The mother who stood in the hospital bathroom and gently sponge bathed her thin, naked daughter after surgery. The mother who sat quietly as her daughter sobbed to her husband in her grief, "I would understand if you left me now."

She was there for the raw moments of pure grief, grieving too, and watching helplessly. "I was so scared that I would say or do something that would cause you not to want to live any more," she sobbed. And we sat with our arms around each other. And I knew that there was no one else who understood what she had been through the past two years. The toll that it had taken on her. The burden she had carried. No one else, because she alone is my mother.

Losing my balance

2010-02-13T06:41:00.004-07:00

February 17, 2010

As I was in the shower the other morning washing one of my feet, I lost my balance a little and had to steady myself. It made me laugh. How many times have we all done that? Too many to count, I'm sure. Whenever that happens to me now, it takes me back to my early days of recovery. The very early days of recovery. Those first days when I returned home after having had my colon removed, I was so weak. It took all my concentration to keep my balance when I was walking. Seriously, I had to keep my head down, watch my feet, and take very small, slow steps. My mom was with us then for a while. She would walk in the back yard with me, walking in circles. She would walk through the house with me, in and out of each bedroom, around the living room, around the dining room table. Ten minutes. That was my goal each time. If I did that walk three times a day I was happy. I had accomplished something. As she walked with me, if she said something to make me laugh I would lose my balance and have to reach out to grab a hold of her, or I would stumble. Showering took everything out of me. I usually needed a nap after I showered. My back had no strength and so raising my arms to wash my hair took energy I didn't always have. I couldn't bend over, I didn't have the strength to straighten back up.

As I was gaining strength I remember getting excited about that. I had these two-pound free weights that I carried around with me one day as I walked my loop through the house. I started singing the Rocky song - you know - the one where he climbs to the top of the stairs? I was going for a laugh and it worked. But the next day I was so exhausted I think I slept the whole day. "You might have over done it a little yesterday sweetie," Mom said. But hey, I got a laugh out of it.

I know a lot of people who have had to start over. Oddly enough, when I was in the ER on what I believe was the worst day of my illness, a friend of ours was also in the ER. Jeremy saw his wife there and found out he had been in a motorcycle accident. A bad one. He had months of physical therapy and recovery as his body was rebuilt. It's humbling. No. Those words don't do justice to the experience: "It's humbling." It's also terrifying, exhausting, challenging, and life changing - having to start over. But it's a gift too. It's a gift because I have a gratitude now for things that I never would have otherwise. And really, gratitude is one of those things that I believe has been life changing for me.

Today I am grateful that I can raise my arms above my head, that I can walk without thinking (usually - smile), that I can bend over to pick up Django's toy off the ground, and that there is energy flowing through me.

What's a girl to do?

2010-02-10T05:44:00.004-07:00

February 10, 2010

There's this struggle going on inside me about starting a family. Some of it is an old struggle. For many years of our marriage, neither Jeremy nor I wanted kids. We would nudge each other and whisper, "That's why I don't want kids," anytime we were out and about and saw kids misbehaving or parents not getting to eat their meals, things like that. And it was true. As cliche as it sounds, when I turned 30 the desire to have a baby struck. But even then, we went back and forth as to whether it was something we really wanted to do or not. When we finally decided to try, we tried for four months and nothing happened and then I got a new job so we stopped trying. Then in October of 2007 we went to my sister's wedding and I got to spend some time with my niece - oh did the maternal instincts start kicking in! "Let's just try for a couple of months Jeremy. Two months. If nothing happens, then that's it." And he agreed. And that next month we conceived Harper. But you see, even then the desire wasn't so strong that we said we would do anything to start a family. No. We said we'd try for two months.

Okay, so here I am now. I am going back through the same ambivalence I used to struggle with. Should we start a family (adoption) or shouldn't we? Do I want to focus all my energy on raising a child? Or not? Do I want to change my lifestyle drastically? Or not? Those were the questions I used to have and still do. But there are even more questions now. And before I explain, let me just say that I know these are cognitive distortions, but I get hung up on them nonetheless. So I find myself thinking, if I don't want to start a family now, somehow that means I didn't really want Harper. Then I start feeling guilty. And the times that I do think I want a family, I start to wonder if what I really want is Harper. It's hard to know if the desire comes from grief of wanting what I lost, or from true desire for my life now. That aspect of it makes me wonder if I'm ready emotionally to make the decision now or not.

There's a lot to sort through. A lot of mixed up thoughts and feelings to figure out. Like everything, it's not all black and white for me. One of the funny things about this is that typically I'm a very decisive person. I know what I want. One of my friends told me she didn't know anyone who thought through having kids as much as Jeremy and I have. Ahhhh!! I know. I know. Until I have it all figured out, I'm just going to focus on enjoying my life day by day, because it is a good life. It's a very good life.

All that I wanted

2010-02-02T19:04:00.002-07:00

February 2, 2010

I just want to be home. Oh that thought was constantly on my mind. I hated the hospital. I didn't believe that I would ever get to go home. I thought I would have to be there through the duration of my pregnancy. That would have been from March until August in the hospital. But I didn't really believe I was going to live through it all anyway.

Home. Home to me then meant health. It meant the way my life was before. I had such a good life. I had nothing to complain about before. Couldn't I just go back to the way it was before? If only they'd let me go home, it all would be as it was before. I honestly believed that. I had no idea that when I got home fear would be sitting in the corner smirking at me. Loss was in every room, every vista I saw before me. Pain had morphed itself into me and made a permanent home in my body. There was nowhere to go to escape it all. But I could still picture the home I had before if I closed my eyes. I could see Jeremy and I puttering around on a Saturday morning. I could see us sitting in the back yard by the chiminea, him with his guitar, me with my coffee. I remembered the evenings relaxing in the hot-tub under the stars talking, planning, dreaming together.

So here I am now. Somehow we've managed to work through the fear. I don't know how we did it. I guess by flashing a light around, pointing it out every time we came upon it, being aware of its presence. And now? I'm not afraid any more. And the pain? The pain is pretty much gone, save for a flare once in a while or a medication adjustment that messes things up. Yes, the loss is still there. The loss will always be there, but it doesn't hurt me every day, even though I think of it every day. The loss has become this warmth in my heart. I don't know how else to describe it. The loss has also become a symbol of strength and resilience to me. And that's comforting in it's own way.

And you know what? I think I have found home again. Six and a half years ago, shortly after Jeremy and I moved to Tucson, I returned to the Midwest to attend my grandfather's funeral. I remember my aunt asking me where home for me was. I told her, "Home is where my husband is." That's truer now for me than it has ever been. Together Jeremy and I have this life. It's reassuring, and comforting, yes, and even fun. And I desperately don't want to miss the fact that I have found home. It was all that I wanted. And now I have it again. How many times do we get that chance? To cherish something we thought we had lost? To learn to appreciate? Not many. So I'm not going to miss out on it. I've found home again.

Too much to ponder

2010-01-29T07:03:00.004-07:00

January 29, 2010

I'm confused about my emotional state right now. I'm not used to being confused about how or what I'm feeling, but I am. So here I go in trying to sort it all out:

I'm sad. I'm sad that my view of the world and my life has changed. This morning I was thinking about the fact that when I was pregnant it was the most exciting thing I had ever experienced. I don't think I'm ever going to be able to experience that again. Maybe every woman who has been pregnant or who realizes she's done having children goes through this, I don't know. But for me, it makes me sad. Maybe this is just my depression talking, I don't know. Maybe I've reached a stage where I'm content with the present. Because I am content right now. I have a very good life, and I am ever so grateful for that. It might not sound like it if you read my blog because I complain a lot here, I know. But I truly am grateful for all that I am blessed with.

There is this part of me that's afraid to dream. I think that's what it is. I went through this phase after I felt like I had finally "gotten through" the worst of my illness when I felt more alive than I had ever felt before. But that feeling has faded. And now I feel like all the beautiful, wonderful plans I might make for the future, well, what's the point? It can all come tumbling down around me and cause heartache that is as close to unbearable as I can handle. But maybe this experience is good in showing me that living in the present, focusing on what I have now is all that I really need. But I need dreams too, don't do? I need goals. Boy do I need goals. Will time heal this wound? Is there something more that I need to do get to the dreaming me again? (Do I need just a little more medication? smile)

Too much to ponder for a Friday, I know.

GI Update

2010-01-26T05:53:00.002-07:00

January 26, 2010

I had my appointment with Dr. G yesterday. My biggest question for him was why he said last time that it was still on his list for me to have my rectum removed. Dr. G said that the factors that went into recommending that were: 1) my desire to get pregnant; 2) the fact that I still have symptoms; and 3) it would remove the risk of rectal cancer. He said that if #1 and #2 were not issues, he would not suggest I have surgery just to avoid the risk of cancer. That was a huge relief to me. Huge. In my thinking, if he was recommending it because of cancer, then I was going to have the surgery. #1 and #2 are still issues, but they don't feel as urgent to me.

I talked to him about the fact that I'm having probably around 10 BMs a day - which is fine with me, except that I wish I wasn't up two or three times a night going to the bathroom. I told him that there is also still blood when I go to the bathroom two or three times a week (at least). He suggested I take Imodium at night before bed to decrease the number of times. I'll have to mess around with the amount I take, but it could help. He said that the stricture that caused me to need dilations in the past might have something to do with that as well. It could be a stricture causing me to be unable to evacuate completely when I go, which means I have to go more frequently. I think typically people at my stage of the game are only going 4-6 times a day (though that's not a hard and fast rule). He said if the Imodium didn't help that, he might scope me to check out the stricture and see if that's what's causing the problem. It could be. I do have to strain quite a bit when I go, but I'm not in as much pain as I used to be when I had the stricture. I guess we'll see.

In order to treat my UC symptoms, he also prescribed me a steroid enema along with the anti-inflammatory enema I have been using. Dr. G is not certain that the Cipro is treating pouchitis. He sometimes prescribes it for UC too. So, if the two enemas are doing well, I may not need the Cipro. Again, we'll have to see. He said we could go to some other oral medications to treat my UC symptoms, but they can have toxic side-effects and affect my immune system.

I guess that's it. So basically if I feel like I want to get pregnant or that I've had enough of the UC symptoms, he would go ahead and give approval for me to have surgery. Until then I will be scoped each year to check for changes in tissue that might suggest cancer. I'll see him again in two months.

I know many people were praying for me and sending me good thoughts today. Thank you. I feel really good about this appointment and am not going to be scheduling surgery right now. Whew!!

Back to the beginning

2010-01-22T07:06:00.002-07:00

January 22, 2010

I've been stuck back in "the beginning" the last couple of days. The very beginning. Back when I had just found out I was pregnant. When I started experiencing these crazy symptoms that I thought were pregnancy related. Back when I felt sick all the time after I ate. Back when I saw blood.

It's when I go to the bathroom that I flash to that time. My body feels the same right now (as the result of one final attempt to go off my Cipro before I see Dr. G again), like I did in the beginning. It's really quite strange to me. I feel as if I could just blink my eyes and I would be back in time. Maybe it's because it's January. That was when I began to wonder if things really shouldn't be like this. That was when I was told at work that I looked pale and I should go home. That was when I went to my doctor and told her about the blood, wondering if I had hemorrhoids, wondering if there was just a tear, running tests on my stool samples to see what was going on. Nothing? Whew. What a relief! The tests came back negative. It could be something GI, but they wouldn't be able to do any more tests on me until after I delivered anyway. Okay. So I wait. That was when I wrote in my journal, "I don't really feel pregnant yet. Right now I feel like I have this medical condition called pregnancy."

This strange time/space continuum I feel stuck in has me thinking . . . what if I could go back? Can't I just go back in time? Please can't I just go back in time? I would do it all differently. I would say, "No, really, some thing's not right." I would go talk to a GI. The GI would tell me I have ulcerative colitis and put me on steroids. I would have caught it in time. I would have caught it in TIME! I would carry Harper to full term. She would be born alive. I would save my colon. Can't I just go back in time?

But it wouldn't have happened that way anyway. Even if I could go back. The GI would have said, "We can't scope you to see what's going on because you're pregnant. The risk is too great." Even if the GI would have decided to treat me for UC without actually knowing, I wouldn't have responded to the treatment. That was why my colon had to go. My body wasn't responding to the treatments.

So I'm stuck in the here and now, trying to be content. Trying to be grateful. Trying . . . Reminding myself that at least it's not that hell of a past that I'm stuck in. And there's this part of me that's changed too. This part of me that used to think about the future, used to plan and wonder and dream and fantasize about what the future held. I don't know where that part has gone. It makes me sad. I feel like I'm missing a part of myself. How do I get that part back? Is it just time? Time will pass and I'll be able to let go of the memories and focus on the present and then maybe the future too?

I get a little panicked sometimes when I think about the fact that this April it will have been two years since Harper's birth. Two years. I don't want time to pass. I feel like it's taking me away from her. The closer I am to her in time the more understanding people are of me holding on - the less crazy I feel in my grief - the more justified I feel in my grief. I don't know how to let go of the belief that people are judging me for still grieving her. Maybe if she was acknowledged more I wouldn't be so scared. Right now, there are very few people who talk about her existence. Rarely does anyone but me bring her up in conversations. Am I her keeper? Does she only exist because of me? So I have this bond, arguably one of the strongest bonds there is, with this being who hardly anyone but me got to experience a relationship with. How lonely is that in grieving her? In remembering her?

Ahhh . . . I'm stuck. I don't know where to go. Face forward Abby. Look ahead. Look ahead.

You will survive

2010-01-15T07:15:00.003-07:00

January 15, 2010

An exercise Dr. N recommended to help me deal with memories of the hospital:

There I am, hunched over, sitting on the edge of the pre-op gurney. This time I'm thin, without muscle mass. I see my legs dangling over the edge and am sickened by how fragile they are. I lay my head on the cool bedside table and they begin to insert the epidural into my back. There, hovering beside me like a hologram is survivor me, whispering into my ear, "You don't know it and you don't believe it, but you will get through this."

I am lying in my hospital bed, heavy with 100 pounds of fluid between my skin and my bones. The nurse is sitting on a chair next to my bed. Her needles are ready. Jeremy is leaning over me, holding my left hand. I focus so closely on the buttons on his shirt that they begin to blur. I breath deep into my stomach. She digs the thick needle into my wrist, searching, probing. She pulls it out. Didn't work. Just one more try - she promises. There again is survivor me, whispering into my ear, "You don't know it and you don't believe it, but one day there will be only a small scar on your wrist from this. You will get through this."

I am laying flat on my back in the operating room. Bright lights are over my head. Contraptions hang from the ceiling. People walk around talking with each other, joking, flirting, and I feel myself begin to fade before they cut open my stomach from three inches above my belly button to my pubic bone. There, hovering in my sleeping mind's eye is survivor me, whispering, "You will wake up. You will heal. All that will be left is a soft white line down the center of your stomach. You will get through this."

I am once again lying in my hospital bed. More tests needed that they can't perform on me because my body isn't cooperating. The nurse tells me she'll have to insert a catheter so they can collect urine. I spread my legs and Jeremy helps her as she guides the tube into the sore raw parts of me. And there is survivor me, whispering, "One day you'll laugh at this. It hurts now, and you're exhausted, but you will get through this."

Survivor me stands vigil beside my bed. She doesn't have to say much right now. Hospital me is trying hard to be brave, to laugh and joke so this doesn't hurt. The nurse explains how the tube will be inserted through my nose, down my throat, into my stomach so we can clear away the obstruction. All hospital me has to do is swallow - keep swallowing - don't fight it as the tube is inserted. "Like bonging a beer?" hospital me jokes. The younger nurse laughs. Yes. Like bonging a beer. And then they begin and tears flow. Survivor me whispers in my ear, "This too you will get through. I promise you."

The nurse came to my room to insert the first of four PIC lines. She pricks me and pushes the line up through my arm. She pushes so hard my entire upper arm turns dark blue and purple and stays that way for weeks. I feel light-headed when I look at it, wondering how much more my frail body can take. Survivor me sits beside my bed and holds my hand, whispering to me, "The bruises will fade. All that will be left are tiny scars on your arms. You will make it. These PIC lines will help you survive - and you will survive."

Survivor me is there every day for the numerous daily shots of insulin and heparin hospital me endures. Survivor me whispers, "All the bruises left by these needles, they aren't permanent. Your arms will gain muscle again. Your body will gain strength. You will get through this."

There survivor me is, the night hospital me panicked. The night hospital me sat on the edge of my bed, heart racing, hands sweating, mind whirling, sobbing that I could not go to sleep. Sobbing because I was jumping out of my own skin. Sobbing because I knew my mind was breaking on me. She whispered in my ear, "Your mind is stronger than you believe. Your mind will battle many demons and triumph. You will survive. You don't believe it, but I know it. You will survive."

Hospital me wakes from having passed out cold in the emergency room. A bedpan is under me and blood and feces are overflowing onto the bed, coming from my body, my body that is decaying and dying. I wish I could melt away and disappear into the sheets and forever be gone from the world. Survivor me whispers, "You aren't done yet Abby. You aren't done. You think this is the end, but it isn't. There's more for you. You will survive."

Hospital me hears the words "life and death situation." Everything else stops. Everyone else disappears. Survivor me squeezes my hand, "Life Abby. Life."

Hospital me lumbers as quickly as possible to the toilet. But not quickly enough. Shit drips from between my legs onto the floor. I'm too large to bend over and clean up after myself. Hospital me pulls the red chord next to the toilet. My head down, eyes that cannot make eye contact ask for someone to clean up the shit that I left behind. To clean up the shit on my gown. Sobs escape my body. Survivor me puts a hand on my shoulder and whispers, "This is not who you are. One day you will once again believe that you are more than a decaying body of shit, blood and guts. One day you will feel alive and vibrant. You will have ideas and hopes for the future. You will give to others and feel full in your life. You will survive this."

Hospital me swallows the white pasty drink. The pain in my body has me writhing and screaming for help. "It hurts! It hurts! Please help me!" I cry out. The radiation rays they bombard me with confirm that my insides are close to exploding. And other things are going wrong too. They infuse me with potassium that burns under my skin until I yell for help. More overflowing bedpans. More blood. More feces. Survivor me, who I have lost faith in whispers, "You don't have to believe me for it to be true: You will come through this. You are so afraid. And you are exhausted. But you have the gift of life flowing through you, and it is stronger than all of this sickness. You don't even have to try anymore. The life force in you will continue on because that's what is has to do. So let go sweet tired girl. Let go and trust that you will survive."

Hospital me pushes, because that's what the doctor tells me to do, though I wonder if I will live through it. She slides out of me, between my legs with one great push. Fourteen ounces of beautiful heartache, there in the doctor's hands. I hold her and love her before the night turns to fog in my mind. Hospital me feels my heart crumble inside me. I go numb. Survivor me whispers, "Your heart will gently be molded back together. It will be softer, it will be tender, but it will once again function for you. You will survive."

It's still there

2010-01-09T07:12:00.002-07:00

January 9, 2010

It's the early morning hours when the memories most often flood me. After my second or third time of getting up to use the bathroom in the night, it's hard not to think about the reason my sleep is being disrupted and of all the other restless nights I've had. This morning, before the sun came up, it was thoughts of all the poking and prodding that was done to me. Because it's in the name of healing we don't call it torture, but really, let's be honest. I went through torture for weeks and weeks on end. I'm sitting here wanting to describe it all, but I can't. I don't even know where to start and I don't know that I want to give any more mental space to it now that I'm awake and ready to start my day. But it's still there in my head - the torture. It's still there.

I just don't know

2010-01-07T19:35:00.002-07:00

January 7, 2010

"You know, there isn't a day that goes by that I don't think about the hospital. And not just once, but several times a day. Do you? Do you think about it?" I asked him.

"Yeah. I think about it just about every day. I think about it a couple of different ways. Sometimes I think about all we went through, and other times I think about all that's missing from our lives now," he said.

It's such a buzz word, I know, but I feel like I need something in order to get closure. Not with Harper's death. I think I'm understanding more and more all the time how to incorporate the memory of her in my life. No. What I need closure with is the hospital experience. How do I incorporate that grief and experience into my life? I just don't know. But it's a huge part of my experience. I feel like I need to talk and talk and talk about it. Except that it's just not so cool to talk about that kind of thing. I just don't know what to do.

Lots to think about

2010-01-03T07:06:00.002-07:00

January 3, 2009

I feel like I'm biding my time right now. I have so many questions to ask Dr. G at my next appointment on the 25th. Questions about surgery, the urgency of it (or lack thereof), more specifics about his reasoning for recommending it, chances of success (meaning not ending up with a permanent ostomy), etc., etc. I went ahead and made an appointment with Dr. T, my surgeon, for February 1st. I figured if the answers to my questions for Dr. G convinced me that surgery is the wisest course of action, then I would want to go ahead with the surgery as soon as possible. No messing around. So I would have my consultation appointment already scheduled. If my conversation with Dr. G doesn't convince me, I'll just cancel my appointment with her. If surgery is something that I need to have done, then I would rather have it done before we start our family (much easier to recover without having to worry about a little one too).

Lots to think about . . .

Appetite

2009-12-29T17:32:00.004-07:00

December 29, 2009

I bit off a piece of banana this morning and chewed it, deliberate bites. The bitterness lingered on my teeth after I had swallowed. Too green. Ick. And the memory of eating bananas (for the potassium and for the binding properties) took me to another place.

Deliberate bites. That's what you do when you have no appetite. You chew your food, longer than you should, because you don't want to swallow. Swallowing is hard to do. You can't even really tell if there's flavor in the food or not. Texture means nothing any more. You struggle with thoughts of the food getting lodged in your intestine. That would cause pain and possibly a hospitalization. So you chew. And you chew. And as you sit at your meal that takes longer than a meal has ever taken before, you begin to feel warmth against your side. You feel something move there, next to your skin, and you realize that the food that you have been eating for probably half an hour is now exiting your body, there at your stomach. And you try not to picture the liquid that quite possibly still has color or shape or even smell of the food you just put into your mouth, emptying into the bag that you are very aware of hanging off your stomach. And you know that it won't be long before you'll have to sit down on the toilet and open the end of the bag to empty the contents into the toilet, because you can feel the bag filling up. And when it's full, you head to the bathroom. You wad up toilet paper and put it in the toilet first. You learned the hard way that if you don't do that, you'll experience a little too up-close-and-personally what "backsplash" means. You unclip the plastic clip that miraculously keeps the bag closed. You fold the edges of the bag back over itself and with a quick, masterful motion point the bag into the toilet. And if the contents were liquid, then the bag is now empty. But if you ate something, like a banana or white bread, the contents probably didn't just empty easily into the toilet. No, in that case you have to push the contents out, as you would toothpaste from a tube, only your bag is many times larger than a tube of toothpaste. The bag is empty, but you're not done yet. You have to make sure the edges of the bag are clean so it won't smell. So you take toilet paper and fold it just so - the perfect shape to clean out the inside edges of the bag. And you wipe the bag off. And you hold it up because you can already feel it starting to fill again, and you clip the plastic clip over the end to keep it closed. And you know you'll be back here in an hour or so, doing the same thing again. But maybe, just maybe if you don't eat anything, you'll get a break. Because who wants to eat anyway?

Subsequent thoughts:

*I'm so thankful to have my appetite again and to be back at my "normal" weight. I didn't know until I lost my appetite how truly important the pleasure of food is.

*There was a time when I was pretty proud of how quickly I could manage this routine.

*Big deal Abby. Everyone goes to the bathroom. Your way was just a little different.

*I could do it again if I had to. I could.

Stand your ground

2009-12-24T06:54:00.004-07:00

December 24, 2009

Okay Abby. You can do this. You can. Get your head in the game girl.

And then, as if he was reading my mind, Jeremy put one of his new Tom Petty CDs in the player (and no, the song isn't new, but the live release is):

Well I won't back down,
no I won't back down
You can stand me up at the gates of hell,
but I won't back down

Gonna stand my ground,
won't be turned around
and I'll keep this world from draggin' me down
gonna stand my ground,
and I won't back down

Hey baby, there ain't no easy way out
hey I will stand my ground
and I won't back down

Well I know what's right,
I got just one life
in a world that keeps on pushin' me around
but I'll stand my ground and
I won't back down

That's right Abby. How about listening to this song this morning? This one will keep you going. Stand your ground girl. Stand your ground.

My very best

2009-12-23T06:48:00.004-07:00

December 23, 2009

I'll admit it. Yesterday I indulged in a bit of "poor me" behavior on my way home from work. It started off innocently enough. I planned on stopping at Target to pick up a couple of last minute stocking stuffers for Jeremy (okay, Django too). As I pulled into the turn lane to enter the Target shopping area I gasped quietly to myself. I could be Christmas shopping for Harper this year. Hmmm . . . What would it be like? What toys would I be drawn to for her? What toys are there for 16 month old little girls? I decided I would peruse the toy section to see what I was missing out on. I know, I know. That really is just making things worse for myself isn't it? I know. I didn't actually make it to the toy section though. The children's clothing was as far as I got. It really was purposeful torture. I don't know why I did it. I don't know what sick need I was fulfilling in myself, but I browsed through the little girl Christmas dresses (what was left of them anyway). I chuckled to myself thinking about the fact that Harper would not have been in clothes typical for a 16 month old. No. She was a Cashman baby. She looked like a Cashman baby. Cashman babies are big babies. I'm sure she would have been wearing bigger-sized clothes. I was taken aback at how little girl and not baby the dresses were for her age. I reached out and touched one of the cotton PJ's that had the little footsies. It actually physically hurt me to touch them. I could see little arms and feet and a protruding toddler tummy fitting into them. I turned away quickly. That was it. That was all I could handle. Honestly though? As torturous as it sounds, it also was very reassuring to me. My daughter was not just a figment of my imagination. She was a real baby that I birthed. She was and is a part of our family. A part that I'm missing something awful this Christmas.

Last Christmas I had just gotten home from the hospital on the 22nd after my third surgery. My focus and energy was on my physical health and making it day to day. I cried for Harper on Christmas Day, but I had not yet really begun to grieve her. This year, the loss is everywhere. I cry every day on my way to work and most days on my way home. She's missing from everything. I am not sending out Christmas cards or photos or letters talking about all Harper did this year. I'm not facing the crowds at the stores to shop for her gifts. I'm not dolling her up for Christmas parties. I'm not staying up till after she's gone to bed to wrap presents and hide them in our closet till Christmas morning. We're not decorating Christmas cookies together. I'm not reading her Christmas stories or watching Christmas movies with her. We're not singing Jingle Bells together or Away in a Manger (with all the choreography). Her absence is everywhere for me. And the deeper we get into the holiday season the more I want to close my door and lock myself away from it all. It hurts and I'm sad. There's just no other way to put it.

So dear friends, please forgive me if you don't get cards or if I don't enter into the Christmas festivities this year. I'm doing my very best. I'm trying . . .

Who knew?

2009-12-22T05:50:00.002-07:00

December 22, 2009

I want my old life back, I thought to myself yesterday. Who knew the holidays would be so hard? I didn't, that's for sure. I miss Harper every day. Every day. I've been having a hard time lately too because there's this annoying little voice in my head saying, You should be better than this by now. This shouldn't hurt so much any more. But it does. It all seems to unreal to me sometimes too. Was I really pregnant? Did I really wear maternity clothes and rest my hands on my protruding tummy? Was that really me? I went through it all, but I have no baby so sometimes it seems like something I dreamt, a story I wrote in my head. But then I see her footprints in my wallet, or hanging in a frame in our fireside room, or catch a glimpse of the photo album full of pictures of her and I remember that I didn't make this all up as a way to torture myself. No. It really happened.

I just haven't been feeling well physically lately either. As planned with Dr. G, I went off my Cipro last week and tried relying on probiotics to help my chronic pouchitis. It didn't take long for things to get bad. Just a couple of days and my bowel movements were like water, all day long, many times a day. I woke up in the morning on Friday with a headache, which turned to a nasty migraine by mid-morning. I think I was dehydrated. It was just too hard to keep up with all the fluid I was losing. I'm back on the Cipro. I'm still struggling with aching and cramping and some blood when I wipe. None of that's good. And my mind is just worn out from all the thinking and weighing the decision to have surgery. I'm just so exhausted.

I decided it was time to try to get in to see Dr. N for a little therapy again. I'm hoping he calls me back today. We'll see . . . I'd like to end this post with some up-beat comment about how I'm hanging in there, but I just don't feel like it. Sorry.

My little girl

2009-12-19T07:01:00.003-07:00

December 19, 2009

On Thursday I was at a client's home doing a home inspection as part of my work. One of the little girls sat on a couch opposite me and showed me her Build-A-Bear. I told her how much I liked it and asked her where she got it. She told me and then, looking me straight in the face, her head tilted: "Do you have a little girl?"

I froze for a moment. I sped through an internal dialogue: What do I say to this child? "None living?" No. I can't say that to a child. Adults, yes. Children, no. "Yes?" And then she'll ask me how old she is. I can't do that. Kids know when you're not telling them everything. I won't have any credibility with her.

"No," I finally sputtered out and I felt the heat rise around my neck. Every time I answer that question with a "no," I feel as though I'm betraying a huge part of myself. But I don't know what else to do. My adrenaline was pumping and I wanted to sob. But I didn't. I fumbled through some questions, trying to track what was being said around me, thankful for my colleague who stepped in and asked questions too until I could gain my footing again.

It wasn't until I got to my car to drive home that I began to sob.

The previous Saturday night we were driving back from Casa Grande after spending an evening with Jeremy's parents and sister, brother-in-law and his mother too. It was dark as we headed home. Jeremy and I were quiet and, I swear I wasn't hallucinating, but I thought Harper was in the back seat in her car seat. I thought she had just kissed her auntie and uncle and grandma and grandpa goodbye. I thought I had grabbed her diaper bag as Jeremy carried her in his arms to the car and fastened her in to her seat and she had fallen asleep. It was what should have been. I actually turned to look at our empty back seat to make sure that what I was dreaming was not true. It wasn't.

A mere 365 days

2009-12-13T10:45:00.003-07:00

December 13, 2009

Another painful anniversary this weekend. One year ago on Friday, I came home from work early, a complete mess. My ostomy bag had sprung a leak, not once, but twice. The first time I was prepared. I locked my office door, changed into my extra outfit that I carried around with me for such occasions (because they were happening more and more frequently), and changed my bag. When I changed my bag, it was quite painful. My skin stung so badly, and I knew I didn't get a good seal. My skin around my stoma (stoma = the part of my intestine that was sticking out of my abdomen) was looking bad. When my bag started leaking the second time, I wasn't prepared. I had already used my back-up supplies, so I let my boss know I had to leave, sobbing as I did so.

My dad and his wife where visiting for the weekend. We were going to celebrate Christmas together early. Dad's gift to us last year was that he laid brick around our fireplace and when I arrived home I found him finishing up the job, Jeremy and Barbara admiring his work. I headed straight to the bedroom and changed my clothes and my bag again. I was scared to move at that point. It seemed any movement caused my seal to break and a leak to occur. I honestly don't remember how many times I ended up changing my bag that night. The skin around my stoma was just too damaged to get any kind of a seal. We didn't know what to do. Jeremy e-mailed our ostomy nurse, Kelly (God bless her), and they tried to come up with ideas all evening long. If I remember correctly, Kelly even called us from her home to try to help us. Oh that meant so much . . .

Evening turned to night and things got worse. The bag kept leaking, and every time it did the output from my stoma spurted onto my skin which at that time had become almost an open wound. The pain was unbearable. I could sense the panic rising in Jeremy. We didn't know what to do. No bag would stick. I was laying in bed with chuck pads under me and basically cleaning up the almost constant output that was coming with paper towels, writhing in pain any time I didn't catch the liquid before it hit my skin. We couldn't keep up. I hollered for my dad and Barbara. Dry paper towels hurt on my skin, so Dad and Barbara kept warm, wet paper towels coming my way as Jeremy talked with Kelly on the phone. I was groaning and yelling the pain was so bad. I wasn't even concerned with getting a bag to stick anymore. I just wanted the pain to stop. Pain meds weren't helping. Kelly suggested I let warm water run over the stoma and my skin. (I was pretty sick around this time too. I was having a hard time staying hydrated, even with nightly IV fluids. I just couldn't eat and had lost so much weight. I was at the doctor's weekly and almost every week the scale read 3 pounds lighter than the week before. I was not in good shape.) I was too weak to stand in the shower, so Jeremy got a cooler and set it in the tub. I sat on the cooler, hunched over and let the warm water from the shower wash away the output that continued to spew out of my intestine onto my stomach. It stung at first and I sobbed, but within a few minutes, the pain subsided. I don't know how long I sat in the shower. I think it was like an hour and a half. I honestly don't know how we got through the night. I remember holding each new bag against my stomach, hoping that if I held it it would stay. I was exhausted and fell asleep at some point, only to wake up to the bag leaking again. I know I took another shower in the wee hours of the morning too. When morning came, we made our way to the Emergency Room. There was nothing that was working and I was at the end of my rope.

The ER doc was an idiot. He had no clue what was going on, but pretended to know. It was horrible. He told me there was nothing he could do and was going to send me home. I told him if he sent me home, I would be back because I could not live like this. And it was true. I was done. This weekend one year ago I had reached my limit. Of everything that had happened to me, I reached the end of my coping skills then. Had he given me any hope, I would have held on, but to tell me there was nothing he could do - that was it. There was no way in hell I could keep living like that, not even one more day. No way. If they didn't admit me to help me with what turned out to be a skin infection around my stoma, then they were going to be admitting me psychiatricaly within the next 24 hours, I knew that much. And I told my family that too. "I can't go on anymore," I said, sobbing. I don't know what my dad and Jeremy said to the doctor after that, but they admitted me to the observation unit after that.

I was there for a few days. Dr. T had just started on staff that week and Dr. V introduced her to me. He said she would be taking over my case as it was her specialty. She said she would look at the barium x-rays that had been done of my newly created j-pouch and see what she thought. If it looked like enough healing had occurred, she might go ahead and do my takedown surgery then, a month earlier than they normally do it. The takedown surgery meant I would no longer have my intestine sticking out of my abdomen. I would no longer need a bag attached to me. She was going to let me know the next morning. I prayed harder that night than I have ever prayed.

"I really don't know what I believe about the Bible or even about you God, but I do know that you promised that you wouldn't give me more than I can handle. I'm telling you right now, I think this is it. I don't think I can handle any more. Are you going to stick to your word?"

The next morning she came in and said the barium x-rays looked good and that she would go ahead and do the takedown surgery on me when a spot opened up in the surgery schedule that week. She said scar tissue had formed around the opening to my pouch, and she was going to have to try to dilate me at the beginning of the surgery. If the dilation took, she would be able to proceed, but if it didn't, I might still end up with an ostomy when I came to. Again, I prayed hard. I prepared myself for waking up from the surgery with a bag still attached to me. It was such a difficult way to go into surgery. I remember after I woke up from the surgery I kept asking the post-op nurse if I had a bag or not. I was so groggy. I also kept asking where Jeremy was. Finally when the anesthesia had worn off enough I realized the bag was gone and I started to cry.

Relief is just too simple of a word.

I cannot believe how far I've come in a year. A mere 365 days. It's unbelievable to me. I no longer look like the sickly, defeated woman I was then. I'm no longer that woman. I may still be trying to figure out who I am now, but at least I know I'm no longer her!

Support: In the form of a group

2009-12-09T06:01:00.002-07:00

December 9, 2009

So I made my way to the Footprints support group last night for the first time. I had a headache that got worse and worse as the day worn on. By evening time it hurt to move. I wanted to curl up in the blankets and watch TV, but I knew I couldn't do that. Not last night. The group was all the way on the other side of town from me and I knew I wasn't going to get home until probably 10 p.m. All things I was telling myself as I drove there asking myself, Why are you doing this Abby? But then some song on the radio distracted me and low and behold, what did I start thinking about? Harper. Tears started coming. This is why you're doing this Abby.

As with any support group, the details are confidential, so I can't share with you things other people said (obviously). But what I can tell you is that it was the first time I have cried with other people who knew. And that meant so very much.

One of the things I realized as I sat in the group was that Jeremy and I never memorialized Harper publicly. For one, my health just didn't leave me in a position where planning some type of memorial was really feasible. But now, now it is. I think that might be something that I need to do to bring her existence in to my world, not just my home. I don't know if that makes sense to you or not. Don't get me wrong, I talk about Harper to people who knew what went on. She's not some secret, and I want people to know that. I heard a woman once say, "Talk to me about my dead baby. Trust me, you aren't going to make me feel any worse than I have already felt by bringing it up." I know people have no idea how to approach that type of conversation. Perhaps by having a memorial service, Jeremy and I could let people know that it's okay to talk about her, ask about her, and we could show them the language we use. Does that make sense?

All in all the support group was just what I needed for right now. I don't know if I'll need to go again or not, but it's so good to know that it's there, and I'm ever so grateful for the other people who were willing to open up and share their hearts with me too.

The Scene is Set

2009-12-08T05:21:00.003-07:00

December 8, 2009

There's a scene that's been set in my home. It's a warm, happy, peaceful scene. I've taken a lot of care in setting it too; candles here and there, the tree placed just so, the fireplace lit, stockings, ornaments, it's all there. But there's one thing missing. Harper.

I thought specifically about this Christmas when I was pregnant. I thought about how last Christmas my baby would only have been a few months old, so she wouldn't have understood or gotten excited or curious about any of the holiday festivities. But this Christmas, this Christmas she would have been 16 months old. She would have been into everything and curious and she would have been able to open her own gifts.

When the scene wasn't set, I didn't think about it as much. I didn't notice what was missing. But now it is, and there is this gaping hole in the vision the lays before me. And so I cry because that's all I can do. I cry, and I tell myself I'm not going to pretend to be happy if I'm feeling sad. I'm going to be true to what I'm feeling.

Yesterday was a chilly day. I couldn't seem to warm up for the life of me. Even with a cup of hot tea my hands were like icicles. So when I came home I started a fire in the fireplace and sat in front of it, watching the flames. You know that trance you fall under in front of a fireplace? Not the creepy arson kind of trance (smile), but the peaceful, warm one? I fell into the trance. Jeremy came and sat with me and asked what I was thinking about. Again, the tears began to fall. I told him about my tearful drive in to work and about the ache I had for Harper. I told him about the scene and how painful it was that she wasn't in it. He came beside me and wrapped his arms around me. "Oh, that's a tough way to start your day off. Sets the mood for the whole day, doesn't it?"

After a few moments I got myself together. We sat and enjoyed the cozy feeling a little while longer. "You would have been in your element too Abby," he said. "Yeah. I would have," I agreed. And then I let myself dream out loud the detailed dreams of her, because I knew he would appreciate them.

"We would have made cookies together. She would have helped me decorate them. They would have been a mess too. Can you picture it? She would have dumped sprinkles on them and covered every last visible spot of icing, but she would have loved it." And I would have loved it. I would have loved eating her sloppy, happy, over-decorated cookies.

Can you see how she's so real to me? From the moment I read the pregnancy test (which just so happened to be two years ago on December 4th), my fantasies of her began. It's enough to make a person not want to dream any more. But who am I kidding? I've always been a dreamer and I will continue to be one. No matter how painful it proves to be.

Did I mention I'm going to the support group tonight? Wish me luck . . .

The Good Days

2009-12-06T18:40:00.004-07:00

December 6, 2009

I don't even realize how good I can feel physically until I have days like I had yesterday and today. I don't know what the magic formula is, and quite frankly that bothers me a little, but I'll take the good days when I get them, no matter how infrequently they may come.

Okay, actually, it bothers me a lot that I don't know what made the last couple of days so good. And seriously, it makes me want to cry because I think, Am I living in pain and discomfort on a daily basis and I don't have to? Things were so tough for me for so long with needing dilations and such. It was an incredibly painful and trying time, and so I'm actually thankful for what I deal with now and I've accepted it. I don't really talk about it to people, except maybe Jeremy, and even then I keep pretty quiet. I have figured that this is the way my life is going to be. But then I have a couple of days where I feel normal and I wonder, does it have to be this way?

So how is it? It's kind of hard to explain. There is this constant pressure and cramping that I walk around with. Hmm . . . I don't really know how to describe it. I'm sure folks with UC understand what I'm talking about. And after I go to the bathroom I feel it too. From time to time you'll find me in my office fighting back the tears after I've gone to the bathroom. I suppose it's like the feeling you have after you've gone to the bathroom when you were sick with diarrhea and the stomach flu, only it's pretty constant for me. You know what I'm talking about? So what do I do? I take something for the pain. I take a warm bath. I'm sure I'd be justified in taking prescription pain meds, but I just don't even want to go down that path. So I don't.

Honestly? I think it's worse than I've let on or even than I've let myself believe. Geez. I really wonder if I've been in denial. And what's the alternative? Another surgery, because medications just don't seem to get it done. Ugh. No freakin' way. I just don't want to do that. So maybe that's why I'm in denial. It's how I cope.

And as this evening rolls around, the good feeling, the normal feeling, has passed. But hey, it was a good weekend. I got in a couple of nice runs with my husband and sat through an entire movie without even having to use the bathroom at the end!

2009-12-02T07:02:00.003-07:00

December 2, 2009

"There's been blood when I wipe lately," I finally admitted.

"Really?" he asked. "Then you need to start doing your enemas again."

"Ahhh. I hate doing those enemas!" It's true. I hate it. Every night before bed. It does not make for an easy drifting off to sleep, that's for sure.

"Well I'll help you with them then," he offered - seriously. I laughed.

"It's not that I can't do them myself," I explained, "It's just that I hate how it feels after I've done them." I think if you listened closely you could hear me growling inside.

"Well we need you healthy, don't we Django?" he asked. Django perked up and walked over to us. "Tell your mama how much we need her," he said to the dog as we both petted him. I laughed again.

"You just need me to walk you," I said to Django.

"No. We need you. Tell your mama how much we need her Django," he said. And I believe them. My boys need me. And I need to be responsible here and take care of myself for them. I honestly think I've been in denial lately, because I know that there has been blood for quite a while. Not a lot. That's good. But it's been there nonetheless, which means the disease continues to flare. No remission. I just kept telling myself it was hemorrhoids. But no. It's not. I'm afraid that by admitting that it continues to flare, I'm one step closer to another surgery and the possibility of an ostomy again. But maybe I'm willing to live with it. Maybe I am. Maybe I would rather feel not 100% all the time than live with an ostomy. God, these choices are hard. And yes, it's not certain that I would have an ostomy again, but . . .

Okay. So tonight - the enema. Once again, the enema routine. Really Abby, it's a little inconvenience compared to what could be - right? Yes. Right.

Acceptance

2009-11-29T17:27:00.002-07:00

November 29, 2009

Yesterday I was home alone all day long. I decided to go out to the Mission for a little time of solitude, reflection, and prayer. I'm not Catholic, but there's something about the place, the reverence and beauty of it that centers me rather quickly. Little did I know there was some sort of event going on outside the Mission and that the place would be buzzing with tourists. No matter. I walked into the church and sat down and started to pray.

As I prayed, I realized the words I was using this time were much different than other times I'd gone out to the Mission to pray. There was desperation in my pleading with God in the past. I wasn't asking for things I wanted. I was begging with him, telling him what I thought my limits were, letting him know I was barely holding on. Not this time. And honestly? I felt a little silly this time. Oh God, you know I want a baby so badly. I have so much love to give. And then the thought hit me, Then why aren't you giving it? You don't have to wait for a baby to give the love you have.

Something has happened to me recently, my experience at the Mission being only one part of the realization process. I've realized that I am going to miss out on a huge chunk of goodness in my life if I keep focusing on what I do not have, because really, I have SO much.

Today I went to the grocery store and as I was getting out of my car, there was an elderly couple, I would guess in their 80's, getting out of their car too. I looked at the woman and thought, She could have had a stillbirth. I'm sure she has seen more heartache and tragedy in her long life than I could imagine. Life goes on. It does. And I can choose to feel sorry for myself and the losses I've experienced, the things I don't have, or I can be grateful for the goodness in my life. Today I choose to be grateful.

My heart feels so full in choosing gratitude. Right now I'm sitting in front of the fireplace, laptop on my lap, sleeping dog by my side, (husband in the other room watching football), Christmas music playing and a cranberry apple crisp in the oven. Oh, such buttery sweetness filling the room! I don't want to miss the goodness any longer because I'm distracted by what I think should be.

Isn't this called the acceptance stage of grief?

Peeking through a cracked door

2009-11-27T18:19:00.003-07:00

November 27, 2009

On Monday Jeremy and I attended my appointment with Dr. G, my GI doc. Dr. G always makes me smile when he enters a room. He's a rather short man, which always surprises me because in my mind, he's larger than life. Back when I was first sick, when other hospitals were turning me down because they wouldn't/couldn't treat a pregnant woman in my condition, Dr. G said he would treat me as soon as a bed opened at his hospital.

He shakes our hands and smiles, then jumps up on the examining table and talks with us as his feet dangle. We sit in the chairs against the wall. "So how're you doing?" he asks. I tell him I'm doing well. "Yeah? Then why'd you bring him with you?" he asks, motioning with his head to Jeremy, a cocky smile on his face.

"We wanted to talk to you about pregnancy," I say. "What would you say about me getting pregnant?" I feel myself start to flush, the anxiety creeping up red around my neck. Here we go.

"I would recommend that you have the remainder of your rectum removed before you get pregnant." Well don't beat around the bush now Dr. G (sarcasm intended).

"Really?" I ask, pleading as if my disappointment can get him to change his mind.

"Granted, you only have a small portion of your rectum left, but even a small portion can cause a lot of problems. Sure, some women go into remission with the disease during pregnancy, but because of your history of the disease flaring and not responding to medications during pregnancy, we could expect that to happen again if you were to be pregnant again." He pauses. "Have you talked with anyone else about this?" he asks.

"Yeah, we talked with Dr. T and with my OB."

"And what did they say?" he asks.

"Dr. T said that if I wanted to get pregnant we should start trying right away because every surgery increases the chances of infertility because of scar tissue and whatnot. My OB said that I would be considered high risk and they would watch me closely. She talked about how she would want me to deliver and told me that I would have to be on a medication other than Cipro," I explain.

"Yeah, I didn't even think about that part," he says.

Jeremy chimes in, "She said especially during the first trimester the Cipro would not be good."

"None of the medications would be good during the first trimester," Dr. G agrees. "We could try you on probiotics. I can't remember, have we tried probiotics yet?" he asks. I tell him we haven't. "I wouldn't be as worried about the infertility piece. Yeah, scar tissue can cause problems, but maybe you have scar tissue, maybe you don't. There's really no way to know for sure until you get in there. And as far as being high risk is concerned, you definitely wouldn't be as high risk as you were last time. We know that. This is just my opinion. You could go to another doctor who would tell you to go for it and that there's no reason you shouldn't get pregnant."

He goes back to talking about having my remaining piece of rectum removed. "It's something that's on my list for you eventually anyway. Because of the severity of the disease in you, you're high risk for rectal cancer. I'd like to see it come out." And then the part that I'm dreading,"Of course, any time you go in and make changes after your j-pouch has been created, you risk ending up with a permanent ostomy. The j-pouch is pretty delicate and revisions aren't always possible, so you'd have to think about that too in deciding whether to have the surgery or not."

Any other information he gave us is lost on me. I've gotten as much as I can digest. He shakes our hands again and I say, "Thank you. You're one of the people we're thankful for this year," and I start to get choked up. "Well I'm glad you're my patient," he says with a smile and leaves.

Since then, I've started on one of the probiotics he recommended. After I've been on it for about three weeks I'll go off the Cipro and see how I feel. I have a follow-up appointment with Dr. G again January 25th. Till then, much to process. But please know that even though I'm asking questions about pregnancy, we are still proceeding with the adoption process. We're still waiting for the orientation and classes to be scheduled, which probably won't happen until the beginning of the year. It's just I haven't been able to close the door completely on pregnancy yet (smile).

Thanks for listening

2009-11-23T02:00:00.003-07:00

November 23, 2009

I worry that something's wrong with me, mentally speaking that is. It seems like I think about my time in the hospital all the time. I don't know why. It frustrates me. I can't seem to let it go. I woke up in the night Saturday night, Jeremy happened to wake up at the same time. I whispered to him, "I can't stop thinking about the hospital. I feel silly." He reached over and smoothed my hair and said, "It's not silly. You lived there for a long time." I think part of it is that yes, I was there for a long time. I spent almost three months in the hospital in 2008. Three months. That's equivalent to an entire summer. Have you ever spent the entire summer someplace other than home?

I think the other part is that there were very few people who shared in the experience with me. My family - they were there for parts of it. Jeremy - I think there was only one day he missed that whole time. But for the most part, I was alone in the experience. My friends didn't hang out with me while I was there. I'm sure many of them would have if I had been in any kind of shape to have visitors, but I wasn't and actually requested that people not come and visit for the majority of the time. And who wants to hear about the gory details now? Once in a while I'll explain my experiences to people in conversations. Once in a while.

I drove by the hospital at night last week on my way home from a friend's house. Hmmm . . . the hospital at night. I was transported. When things were rough, I had Jeremy or my mom or my dad stay the night at the hospital with me. Many nights though, I was alone. It makes me want to sob right now just thinking about it. I was stuck in that room for so long. Very few times did I actually get outside to even see the sunshine in person.

My nights were so long. I couldn't let myself fall asleep until I had been given my last insulin shot and heparin shot for the day. I hated getting the shots, and there was no way I was going to be able to fall asleep knowing they were yet to come. I usually turned on the television and tried to watch some mindless crap to pass the time. But it was hard to focus, both visually and emotionally. Sometimes I laid there in the silence. Sometimes I cried. Before I lost Harper I would also often get a visit from someone from maternity who would come to listen for her heartbeat. I usually liked that, hearing her heartbeat, but there were times that I didn't. There were times that it just reminded me of how helpless I was and times that it felt pointless to me because I had this foreboding about her.

Things would go wrong in the night sometimes too, when I was alone. Something would cause them to worry about pneumonia or blood clots so they would take me down to the lab to have a chest x-ray done, or bring in the technicians to my room to do the x-rays right there. And there was the changing of the guard every evening. It wasn't till almost 9:00 p.m. sometimes before I would get to know who my night nurse would be. If it was someone new, I would have to explain everything to him or her about why I was there.

Sometimes in the night I wouldn't be able to sleep. Imagine that. So I would pull myself out of my bed, wrap a robe around my shoulders, grab my IV pole, and attempt to walk a lap or two around the nurses station. Saying walk kind of makes me laugh though. It was more like I went for a scoot or a shuffle than anything else. I wasn't always able to do that. For a good few weeks there walking was too difficult for me and I required assistance.

The nights I was able to sleep were interrupted all night long by trips to the bathroom and the night sweats. When I would wake up, my bed and clothes were wet with sweat. Sometimes I would ask someone to change my sheets before I went back to bed, sometimes I didn't want to wait so I crawled in and just tried to position myself so I was on the dry parts of the bed. I hated that. The IV machine beeped off and on all night. It beeped when it was time to change my meds. It beeped when there was a kink in the line, and usually it beeped for a reason that no one could figure. I don't even remember any more how frequently they came to check my vitals during the night. Was it every two hours, or every four? I tried to sleep through that sometimes. And every morning at about 3:00 a.m. they came to draw blood. Because I had a PIC line that didn't require that they stick me, so I was lucky that way, but it usually woke me up anyway.

It's hard you know. It's hard to have all these experiences that I keep to myself. And I don't know when it's okay to purge them. And I don't know if I should be past the needing to purge stage. I really don't know. Anyway . . . thanks for "listening."

Prison yard scene

2009-11-20T19:23:00.003-07:00

November 20, 2009

I get to wondering about her sometimes. It's a wondering without sadness. No tears, no ache, just thoughts, pictures, conversations. We're sitting across from each other at a table. The kind of tables you see people sit across from each other at during visiting hours at the prison in the movies. Strange, I know, but that's what I see. We're outside in the prison yard, only there are no fences. Just us sitting across from each other at the table. Unfamiliar with each other, but still wanting to talk, to visit, to get to know each other.

There are three versions of this scene. In one, she is a young adult body, a spirit, a soul, but there's a blank look on her face. There is no knowing. She just is. And she sits across from me and we take each other in.

In another she is the same body, spirit, soul, but she is able to articulate her experiences. And that's what I'm hungry for. Tell me more. Tell me more. I'll sit and listen until the guards say we have to stop. And this is what she tells me:

Yeah, for a while there were just sensations, you know, energy surges and ebbs, rocking, bouncing, floating. But then there were sounds. Oh sure, I knew your voice, and dad's too. I'd know your voices anywhere. And there was a dog too. He'd bark and it would make me jump and then I'd feel you jiggle with laughter. I knew your voice the best. I could feel it vibrate inside me. I shuddered when you would cry. I heard dad singing to us. I felt the warmth of him through your skin. I knew it was him. I knew something was wrong mom. I knew it. I could feel things slowing down. They slowed down, but they stayed steady, so I tried to stay steady too. I wasn't scared. It's just that things reached a point when I thought, It's not right. Now's not the time. And so I decided to let go.

In the third, she is also the same body, spirit, and soul, but she is all knowing. She understands. She is wise beyond anything this world knows. She does the listening. And she comforts me. And she answers all my questions. She's bright, like the sunshine, and she's strong. But I know her so well, even though we've never consciously met. She has all these mannerisms that I know intimately. Her humor - I know her humor so well. It delights me and mystifies me. And I think that she is more beautiful than anything - she's so unspoiled, untouched. That's her brightness - the shine she would have lost in this world. And so it's okay. You know? It's okay.

I am going to do this

2009-11-18T07:05:00.003-07:00

November 18, 2009

"Hello. This is Abby."

"Hi Abby. You had called and left a message asking for information about the Footprints group?"

"Yeah. I just wanted to be sure of the day and time the group meets because I've read a couple of differing schedules on-line."

"Oh sure. The group meets on the first Tuesday of the month at 7:30 p.m. Can I ask if the group is for yourself?"

"Yeah it is."

"Do you mind if I ask about your loss?"

"Of course. We lost our daughter at five months. She was stillborn." I started to get a little choked up here.

She asked if it was due to a certain disease that I had heard of before, but that I couldn't name for you now. I told her it wasn't. I gave her the brief sketch of what happened and the other loss (of my colon) that has complicated the grieving process. She was kind and respectful. She sympathized with me and all we've been through.

"So, are there just women in the group, or who all attends?" I asked.

"Anyone who has been touched by the loss. You can bring any of your support people. We have grandparents that attend, parents, family members. Anyone is welcome."

"How many people do you typically have?"

"Anywhere from three to eight. Of course the holiday season tends to have more people attending. The holidays are hard for people."

"The holidays are hard for me," I said. I wanted to tell her that Harper was conceived at (if not on) Thanksgiving in 2007, but I kept my mouth shut. The tears were starting to well up.

And then she asked the sweetest question. "What is your daughter's name?"

A small smile came across my face. Thank you. Thank you for asking me about my daughter. "Harper Lee Cashman."

"Oh that's cute."

"We named her after Nelle Harper Lee who wrote To Kill A Mockingbird."

She welcomed me again to attend the group. She said she understood how hard it was to start attending a group. I agreed. I told her I was going to plan on attending in December.

And now? Now I have a sense of relief. It's time for me to do this. Not because the grief is unbearable. It isn't anymore. But because I need to be around people who have shared this experience. I need to feel understood. I need to be around people who will normalize what I've been through. I have friends who have been through it and are supporting me through cyber-space, but I need it in person right now. 2000 miles is too far away right now. I need another woman who has been through this to put her arms around me and cry with me.

So this is my commitment to make myself go, no matter how hard it is to drive the almost hour across town by myself and to walk into the room full of strangers. I am going to do this. I am.

My to-do list

2009-11-15T04:35:00.003-07:00

November 15, 2009

Things have been rocky for Jeremy and me lately. I'm going to be honest with you here. You hear me gush about how much I love him and how thankful I am for our marriage, so I figured it's only fair that you also know about the work that goes into getting there.

When we have problems, I so want to be able to pinpoint where they came from, first of all so we can avoid dealing with the same issues again in the future, but I would by lying if I didn't also want to be able to blame someone, particularly Jeremy and not me. That's not so much the case this time though.

I would say the rough patch started almost a month ago now. I think the biggest contributing factor was that I went off my anti-depressants. This time I didn't get all weepy like I did last time I tried to go off them. No, this time I got incredibly irritable. And when I say incredibly irritable, I mean it. The smallest irritation or infraction turned into full blown temper tantrums or telling-off episodes in my mind. It took all the restraint I could muster not to allow what was playing out in my head to become a reality. I noticed it happening right away. This is not who I am. I am normally a pretty patient, calm person. The change was quite apparent to me and it happened in conjunction with going off my anti-depressants.

Of course Jeremy noticed what was happening and we talked about it. If my anti-depressants didn't have certain side effects, I would take them forever. But I reached a point where the side effects were no longer worth the benefits, at least so long as this irritability piece was something that would pass. So we agreed that I would ramp up my exercise routine to help with my biochemistry and see if in a month or so my body could find a balance on its own. Meanwhile, Jeremy agreed to be patient with me and I agreed to seclude myself if the world was irritating me too much. (It wasn't just at home that the irritations happened - it was everywhere.) Things have been improving too. For the most part the short-fuse has passed, though I don't think completely.

Okay. So that's one part of the formula. With the irritability I began to pick, pick, pick at Jeremy. All the little things that irritated me I made known with a vengeance. Of course, it was beginning to wear on him. Add to the irritability piece the grief process. Oh these two do not mix well, let me tell you. There is a big gaping whole in my life right now where I wish there was a child. There was supposed to be a child. There is no child. And so emotionally speaking I'm flailing about the house, dissatisfied with what we've got going on. Nothing is filling the void. And quite frankly, instead of being sad about it, it was pissing me off. With this too Jeremy was on the receiving end of the verbalized dissatisfaction. I've been throwing at him all kinds of things we should be doing, trying to blame him for my dissatisfaction. Oh Abby, it's a wonder he hasn't left you yet.

And the final piece to what has been our bit of hell on earth lately (at least the final piece I've been able to sort out) is fear. I am hypervigilant about how we both have dealt with the tragedies that have come our way. If I'm not always watching how the grief and the fear and the loss is affecting us, I'm afraid it would carry us away to places far apart from each other; to a place where recovering our marriage would not be an option. Have you ever been sideswiped before? Have you ever seen someone be sideswiped in their car? BOOM, out of nowhere impact happens; terrifying, life changing impact. Nothing you saw coming. It takes a long time to recover from that kind of thing happening.

Our sideswipe was major. What was supposed to be the happiest time of our lives turned into loss and life threatening circumstances with what seemed like the flip of a switch. Have you been there? Do you know what I'm talking about? How the fear is there afterwards? Just when you think you've got a handle on the fear and you find yourself not looking over your shoulder so much, something good happens and you remember how quickly you can lose the things you hold dear. You struggle to find a way to control things in a world that is out of control. Well, all of this is still happening for Jeremy and me. I think we're doing well with processing it all, each on our own and also together, but when there are other things (such as the things I've been writing about) that take my attention, I start to panic because I've lost track of where we're at. Are we doing okay? Have we been letting the fear dominate?! I haven't been paying attention! Oh no!! It sounds almost silly, I know. But it's where we're at. What can I say?

We've had quite a few intense conversations lately. Yesterday being one of them. And I realized that I need to take responsibility here. We create our own hell. I have been working pretty diligently on my very own one right here. Enough of the should thinking. That only gets me in trouble. No more I should have a baby; We should be living a different life right now. No more dissatisfaction with what we've got. Gratitude. Yes, gratitude for what we do have. No more FEAR! Or at least no more allowing fear to guide me. We will be able to work through whatever we face, because we are both committed to doing so. So those are all on my to-do list right now. No problem, right (smile)?

Why I run

2009-11-10T05:50:00.003-07:00

November 10, 2009

"Oh sweetie, why don't you wait for me to run and we'll go together when I get home from work? I wanna run too," I implored.

"Okay. But it's not gonna be one of those 'I'm too tired to go,' when you get home is it?"

I laughed, "No. I seriously want to go for a run." And so it was that when I walked in the door he was sitting there in his running clothes waiting for me.

We started off walking through the neighborhood until we got to the park that's about a half a mile away. When we got to the park we both began to ran at our individual speeds around the track. I turned on my music, a Los Lobos mix Jeremy had made for me years ago of my favorite LL tunes. I found a nice pace and let my body settle in.

The sun was beginning to set. The colors were brilliant. I didn't want to turn on the path and leave the beauty behind me. Ahh yes, and then Saint Behind the Glass began to play:

"Baby in his arms, baby in his arms, Saint behind the glass has a baby in his arms."
"Watches me sleep, watches me sleep, Saint behind the glass watches me while I sleep."
"Mother don't cry, mother don't cry, Saint behind the glass tells mother not to cry."

I could see it! I could see it there in the stained glass sky in front of me. The saint behind the glass, in the colors of heaven, holding my Harper Lee. The same saint who watches over me while I sleep, telling me not to cry. My heart welled up with relief and joy. And I opened up and flew. I ran as fast and as hard as I probably ever have. I felt as if I were opening my entire being and letting all the ache fall right out of me. Let go Abby. Let go. And I did. I let go.

Update

2009-11-09T05:40:00.003-07:00

November 9, 2009

I have been doing really well physically lately. On the 23rd I have an appointment with Dr. G, my GI doc. I decided to keep track of my bowel movements (frequency and consistency) for a couple of days to get a more objective idea of how I'm doing in preparation for that appointment. They always ask me questions about that, "So how many bowel movements are you having a day now?" And, "What is the consistency?" It's always so hard for me to answer because it depends on so many things. Also, I might have an evening where I've gone once an hour, but the rest of the day I went every four hours, so it's been hard for me to gage because what I remember is that I had gone every hour one evening. Of course what I eat plays a big factor in all this too. I've also been keeping a food journal - writing down everything I've eaten. But I'll tell you, writing down my bowel movements is much, much harder for me mentally than the food journal.

People who were with me when I was in the hospital know why keeping track of my BMs is so difficult. My mom stayed with me overnight in the hospital when I was going to the bathroom sometimes every 20 to 40 minutes. She knew I couldn't bear to write it all down, it was so discouraging, so she would wake up with me (as if she ever fell asleep), and write down the time, all night long. And then it reached the point where my hands were too swollen for me to write, so Jeremy or my dad or whoever else was stuck there in the hospital room with us would write it down for me. We didn't just do this for a day either, mind you. It was basically the entire time I was hospitalized that we had to do this, and there was a lot riding on how frequently I was going. Like whether I was going to need surgery to have my colon removed or not, which also, at one point, meant whether we might have to risk Harper too. We scribbled little notes next to each time entry too: blood, watery, soupy, lots of blood, cramps, etc. Every single day we went over the entries with the GI docs.

So when I track my BMs now, some of those memories come drifting back. But as I was saying before, things are going well. I would say on average I have 8 bowel movements a day, at least one if not two of those is during the night. And what has been surprising to me is that many of my bowel movements are actually pretty solid in consistency. When I had my colon removed, my doctors and surgeons told me not to anticipate having solid bowel movements again. Granted, one serving of salsa or an apple and my next BM will not be solid, but the fact that I can have solid BMs is quite an accomplishment, I'd say! The more solid they are, the less I have to worry about dehydration too.

In addition to all that, for the most part, my body feels normal to me. There is no more pelvic pain (except when I ovulate, which never used to happen to me - so maybe there's some scar tissue there now, but that's okay). It does feel different when I have BMs. Not to go into too much detail (but we're already there now, aren't we?), but when I do have BMs, they are much smaller in shape and come out differently than they did before. I don't really know how to explain it to you, except that it feels different to go too. But even that I'm getting used to now.

I have a couple of concerns to address with Dr. G at my next appointment. I feel pain in the area of one of my surgery scars when I cough or sneeze, and there's a spot on my abdomen that pops out a little when I do those things - so I'm guessing I have a hernia, but it hasn't concerned me too much. I just want to talk with him about that. I haven't been doing my nightly enemas lately and there has been no blood in my stool, so I'm really happy about that. I'm wondering about going on oral medications for that now since it seems like I'm in remission with the remaining UC in my body. I also just want to talk to him about my long term prognosis as far as whether I'll need to have my remaining rectum removed or not. And then both Jeremy and I really want to go over my Cipro use and whether I in fact have chronic pouchitis or not. Finally, I do want to talk to him about what he thinks about my ability to carry a baby. I know, I know - we've started the adoption process, but I still want to have some questions answered. I've had my surgeon and my OB talk with me about it, but realized I had never really talked with Dr. G about it. We're still moving forward with the adoption though - it's just that I need to have some questions answered. Don't worry!

So that's the update on my physical being. I'm grateful that a year post-j-pouch creation I'm doing this well. I honestly did not think I would ever get to this place. And it hasn't even been a year yet since I had my takedown surgery! (Again, for more information on what a j-pouch is, go to http://www.jpouch.org/ and click on the "illustrated pouch" section - you'll learn a lot!)

The dreams of you

2009-11-07T01:09:00.004-07:00

November 7, 2009

I am becoming my mother. It's 1:10 a.m. and I am awake and so I write. My entire life I have memories of waking up in the night to find a light on in a room somewhere in the house and there is my mom curled up in her robe, writing in her journal. Like mother like daughter.

It was 6:00 p.m. The sky had just turned dark, but streaks of hot pink floated in the darkness leftover from the sunset. I took the back roads home through the reservation, past the San Xavier Mission. The sight of the white mission softly lit against the dark sky caused my chest to tighten. The coolness of the night air washed over me with the windows down and moon roof open. Emmylou was whispering in melodies to me, words that caught my ears. She sang of a lover, but I think of you, my daughter:

"In my imagination, you are my dear companion, and I'm the one you cling to, and your voice still calls my name . . ."

"In my dreams you are the swallow, coming back to Capistrano, and I'm the sound of the bells you follow, but in this world dreams don't come true."

"Still when you're lost out in the desert, when your fire's a dying ember, the last light you'll remember will be the light I shed for you."

"Mine's an ordinary star love, I see exactly where you are love, and no one else could shine that far love, to bring you safely through."

"And though you say you do not want me, and made no promises to haunt me, I will dream my dream of you."

"The sorrow's low down like a fountain, over the miles beyond our counting, more than the flowers of the mountain or the raindrops in the sea, but if heaven's just a dreaming, surely my love will be redeeming, and you will dream your dream of me."

Only I was your mother. You were so much more than the tissues growing inside me. After all, aren't we all more than the tissues so tentatively strung together? Am I not a compilation of thoughts and dreams and feelings and memories to the people who love me? We shared a battle, didn't we? We fought together. I survived. You didn't. As your mother sometimes I wonder, though you had no language or memory, what did you know? Did you know I was your mother? I think we were probably more alike during that time than we could have ever been at any other time. The battle had me whittled down to my core, down to that instinct written in my DNA to survive. That was all my energy allowed. You were like that too, weren't you? Sweet little girl, did you go softly? It's all I can bear sometimes to think about a life dying inside me. It breaks my heart that I couldn't do more. And I miss the dreams of you.

And still I yearn

2009-11-06T05:45:00.003-07:00

November 6, 2009

I've been in a funk lately, emotionally speaking. I'm noticing a pattern to this funk too. Every month when I ovulate it happens to me. The other night I came across a journal that I bought when I was pregnant with Harper. Such a pretty journal. It has flowers along the edges. At the top in small print is the word "BEGIN." There's a butterfly at the bottom outlined in hints of gold. I sat looking at the journal and traced the gold with my fingers. I remember picking it out. I was so excited that this journal was going to be my pregnancy journal. Now the word "BEGIN" just mocks me.

I opened the journal and started reading, only to slam it shut a few moments later. Nope. Couldn't do it. I wish I didn't know what I was missing out on. I wish I had never been pregnant. Ignorance is bliss. Instead, I know. Before I was pregnant there wasn't the deep, deep desire that I have now to carry a baby. My whole world changed when I was pregnant. A deep contentment came over me. The world was full of such vibrant colors. I marveled at everything. Everything was beautiful. I know, it sounds sappy, doesn't it? But that's what happened to me. And that was how I felt even when I was getting sick!! Oh, not to mention what feeling Harper move inside me was like.

It doesn't just go away, the desire. I feel like an addict sometimes the way I think about it, the way I want it. I think about how my body was denied the completion of the process it had started. My body was cheated, I was cheated. Drops of milk escaped from my breasts for a while after I delivered Harper. Oh that was hard. The fibers of my being knew it was not fair or right what happened.

And still I yearn . . .

Nice and easy

2009-11-03T05:48:00.002-07:00

November 3,00 2009

I don't quite understand why when I wake up in the night, memories of being in the hospital are the images that are there with me. It's like they've moved from the forefront of my mind to the edge of my subconscious and they just hang out there waiting for my reality to be unclear to pounce. This morning at 3-something I struggled with memories of the 100 pounds of fluid weight I carried while I was in the hospital. All these frustrations came to mind that made going back to sleep difficult for me.

There are still unanswered questions. There are unanswered questions that I have to let go of. For the most part I have, but at 3-something in the morning, they find their way back to me. I could list for you what the questions are, but I know that won't be helpful for me. Why do I want answers? Why do any of us want answers? Because with answers comes responsibility: someone or something to blame. It gives us a sense of control over tragedy and the randomness of it all. With answers comes protection: we can keep horrors from happening to us again if we know why they happened to begin with. But things just don't happen that way. So I'll keep on learning to let go of my desire to control everything around me so bad things don't happen again. I'll let go of the questions, as hard as that may be, and trust that if (or should I say when) bad things happen, I will have the strength and support to deal with them.

Oh Abby, it all sounds so nice and easy, but you know it's not. No it's not easy, not when your heart has broken. Blah, blah, blah - just words.

If I keep telling myself that's what I want to believe, maybe it will make it easier to believe it.

Pecan pie (not another H&S moment - I promise)

2009-10-31T04:36:00.002-07:00

October 31, 2009

"Oh, this is what I love," I said to Jeremy, clapping me hands with a big smile on my face. "I know you do Abby. I've got the manual on you," he said. There are moments in my life that are so fulfilling, I can hardly stand it. Last night produced quite a few of those for me. Might I share with you?

My former supervisor at work, Ford, and his wife Marie came over for dinner last night. Ford retired in August, and I hadn't seen him since his last day of work. Ford is one of the most gentle souls I know, and he and Marie together, well let's just say I hope that Jeremy and I are as simpatico as they are when we've been married forty years.

So hostessing and entertaining is a huge pleasure for me. And quite honestly, since my illness, it has become much less stressful. It used to be that if we were having people over for dinner I would more likely than not end up with a tension headache during the dinner. I worried about the cleanliness of my home, the timing of all the food being ready, etc., etc. But something happened to me when, during my hospitalization, people were in and out of my house all the time without me being there. I realized on a very deep level that what people care about is me. It's not my house or my food or anything else. That realization has really affected me in a positive way.

So it was with a relaxed effort that I prepared for the dinner last night. On Wednesday evening I buttered and brown-sugared the butternut squash and baked it till it was tender. I scooped the flesh out and saved it in the fridge until Friday night. Thursday morning during my morning off from work I mixed and rested my pie crust dough, then gently battled with it as I formed it into a very homemade looking crust. I beat together the eggs and sugar and Karo and pecans and then filled the house with the scent of warm pecan pie as I set the table. Little tiger pumpkins, green apples and candles ran in a row down the center of the table as my centerpiece. It was all coming together in my mind and I could hardly wait!

Jeremy is always in charge of the music rotation when we have company, and I love it! He and I are in sink about the mood we want to set. Sam Cooke, Neil Halstad, Tom Waits, The Cheyenne Mize and Bonnie Prince Billy, and Dean Martin took turns crooning out tunes as I began chopping the Granny Smiths for the apple salad and Jeremy lit the fire and the candles throughout the house. A quick phone call to mom: "I thought you were having company tonight," she said as she answered the phone. "I am. I don't have much time to talk, but I wanted to know what's your ratio of mayonnaise to sugar in the dressing you make for your salad?" She laughed and told me. I whipped together the dressing and added a touch of cinnamon. The walnuts were toasting in the oven. I could smell them. Oops! They were burning just a touch - time to pull them out! I tossed together the apples, walnuts, and dressing and then added a little feta cheese and set the dish in the fridge.

Ford and Marie arrived just as I was slicing the bread for the bruschetta. Jeremy opened a bottle of Shiraz and a bottle of Pinot Grigio and we all sipped our wine as we chatted while I brushed the bread with olive oil and a little garlic salt while simultaneously browning onions in olive oil and adding the ginger and chicken stock. "I think we should toast adoption," Marie said as she raised her glass. "Oh I think that's a great idea!" We all clicked glasses and began excitedly talking about the adventure Jeremy and I were embarking on. I interrupted the talk with the noise of the food processor as I put the final components of the butternut squash soup together. A dollop of sour cream in the middle and a dusting of ground up flax seed and we were ready to sit down to dinner.

We sat and ate and talked and drank. After our meal we moved to the other half of the room and sat in front of the warmth of the fireplace and talked some more. I plated the pecan pie and brewed a pot of fresh coffee. We laughed and ate and shared some more. Oh it was just all so relaxing and good. These are the moments . . . the very fulfilling moments. And I just wanted to share because most of the time I use this blog to sort through all the tough stuff, but it isn't always tough. There is richness and pleasure and pecan pie!!

Such small things

2009-10-29T09:33:00.003-07:00

October 29, 2009

It was either the 29th or 30th last year when I was finally discharged from the hospital after my second surgery. My mom had flown out so she could be at home with us for a while to help out, unfortunately my hospitalization was longer than anticipated, so we only had less than two days with her at home. They had discharged me the day before but I began vomiting on the way home and had to turn around and go right back to the hospital - same room and everything for another day. I was so frustrated.

I remember the day I was discharged Jeremy came home from the grocery store with a pumpkin and as he spread out newspapers on the floor in front of the couch I was sleeping on, he began carving it. I knew he was doing it to cheer me up. Halloween night I positioned myself on the couch so I could see all the adorable little trick-or-treaters coming to the front door as my mom and Jeremy handed out candy to them. I cried that Harper wasn't there to dress up in one of the baby costumes. I've never been a big Halloween person, but I did look forward to participating in the festivities with a little one in our brood.

Mom left on November 1st. It broke my heart to see her go. When she left, it meant Jeremy and I were alone with our exhaustion and our fears. I had my PIC line hanging from my arm and was getting IV fluids all night long, every night. Jeremy had to help me hook up the fluids. He was so diligent about making sure each port was sanitized before he'd hook me up. If his fingers even brushed against one of the sanitized tubes he would re-sanitize. The last thing we needed was for my PIC line to get infected (which did end up happening by the way - which caused hospitalization number-I-lost-count to happen).

A few days after my mom left, my sister-in-law Heather came out to help us. What a blessing. She cooked wonderful food for us to try to encourage me to eat. She went to my follow-up surgeon appointment with us. She gave me hour long foot rubs every night as I fell asleep, easing the pain with something nice. God bless her, she was willing to put herself in the middle of all our stress and sorrow to help us. I had so many breakdowns while she was here. She was in the back seat of the car on the way home from my appointment with Dr. V when she witnessed Jeremy and me arguing quite loudly about the fact that I had lost another two or three pounds. "It's not like I'm trying to lose weight Jeremy! You don't understand! I can feel the food coming out of my stoma while I'm eating. It's not particularly appetizing. And I'm scared that I'm not going to chew enough and get an obstruction. But I'm trying!"

"Well you can't keep losing weight Abby," his voice got louder and louder. He was so panicked. "You can't just waste away." That's what the argument was really about. Stupid me, I had put to voice the thoughts that were going through my head a while before: I can't do it any more. I wish I could just stop eating and fade away. But it really wasn't my intent to starve myself to death. I really did want to put on weight, but every time I put food in my mouth I had to force myself to chew and swallow. Food was stressing me out.

Man, just writing about this I'm once again reminded of the emotional burden that Jeremy was carrying around for me. It brings me to tears to think about him worrying that I was going to starve myself to death. I was always honest with him too about my desires not to live any more. I knew that if I was going to survive I couldn't keep those thoughts to myself, so I dumped them on him. "I'm not going to do anything to myself Jeremy, but the thoughts are there all day long." The pain was just too much - emotional pain, physical pain, exhaustion. And really, I dumped those thoughts on every member of my family too. God, the fear they must have all felt. I'm so sorry. I'm so very sorry for putting my loved ones through that.

When I say that words of encouragement from friends and family meant the world to me, that is no exaggeration. E-mails, cards, voicemail messages, they all reminded me that there was goodness and love out there if I could just hold on. Sometimes now when I hesitate to call someone for fear I'll make a pest of myself, or debate about taking the time to stop and pick up a card for someone, I remind myself of how much those things meant to me and I end the hesitation. Such small things can be so powerful. We just don't even know, do we?

It ain't that easy

2009-10-28T05:17:00.003-07:00

October 28, 2009

He brought it up, which was unusual. I honestly couldn't remember a time that he had brought up the topic. I'm always the one who tentatively broaches the subject, all the while thinking to myself, Is talking about this going to stress him out? Will he get protective and scared? Or will he be able to join in the excitement? But Saturday night, it was Jeremy who started the conversation about us adopting.

"I'm excited about it," he said looking at me with a smile on his face. (Granted, his emotions were a bit lubricated with IPA and barley wine (was it?) as well as an emotional bon voyage dinner with a dear friend who is more like a brother to us . . . but I digress.)

"Really? You're excited? You've never really said that to me before."

"Yeah. I'm excited. I like seeing you excited too. I'm not scared Abby." Yes. This is what the conversation was really about: fear. And all of a sudden the flood gates opened and he was weeping, his face contorted from the emotion. "I think about how I looked at you through the camera week after week all beaming and happy and all I could see was my own fear. I feel so much guilt that I didn't get excited with you. I wish I could dump these feelings." More sobs.

After I reached week 12 of my pregnancy with Harper and began to show, we took weekly photos of me in the same position to document the growth of my belly. They are hard photos to look at now. They were on the same "roll" of film as the photo of my positive pregnancy test, and then also the photos of Harper when she was born.

"Jeremy, you were scared. That's okay. You were allowed to be scared. Do you think for a moment that I would have chosen to have a baby with you if I wasn't certain that once she was born you were going to let go of your fears and embrace her with everything you had? Is there something you need to hear from me to allow you to let go of the guilt?" I wanted to fix this for him. It broke my heart to see him in such pain, carrying that heavy burden with him. Couldn't I do something to release it for him? Sometimes in the twisted corners of my mind, I get lost and confused and feel like this was all my fault. After all, I was the one who got pregnant. I was the one who got sick. I was the one who lost the baby. Couldn't I also be the one to make this all better for him?

"No. I want to hold on to it because I never want to do that again. I want things to be different this time."

"But don't you think that if you're parenting from a place of guilt, you won't feel free?" But I understood what he was saying. He's learned something from the guilt, and he wants to keep that lesson close to him. It's a fine line to walk though. It's a fuzzy line too.

I told him I loved him, my sweet lover, partner, friend. That was all I could do. And I realized that though we are bonded as one in our commitment to each other, we are still two very separate people, processing grief in our very different ways. It's not always about you Abby. Just because you've let go of the guilt (for the most part) doesn't mean that's where he's at too.

I hesitated to share this conversation because it is one of those intimate moments that I hold dear to me. One of those moments where we were raw with each other, raw and exposed. But this conversation typifies the confusing, complexities of grieving together. You don't just go through a period of sadness and then come to a place where you're happy again. It ain't that easy.