Friday, January 29, 2010

Too much to ponder

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.

Tuesday, January 26, 2010

GI Update

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!!

Friday, January 22, 2010

Back to the beginning

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.

Friday, January 15, 2010

You will survive

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."

Saturday, January 9, 2010

It's still there

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.

Thursday, January 7, 2010

I just don't know

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.

Sunday, January 3, 2010

Lots to think about

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 . . .