Thursday, April 30, 2009

A big day

April 30, 2009

So today was a big day. Jeremy and I went to UMC for my OB appointment. On the drive in I was thinking about how, when I was in the hospital, I had no idea really what the drive there was like, but how Jeremy made the trek usually twice a day. My first drive to UMC from home was in an ambulance after five short (but very long) days out of the hospital. And then it dawned on me: that ambulance ride was one year ago today. That was the second time I seriously thought I was going to die. I was losing a lot of blood every time I went to the bathroom. I blacked out a couple of times and then passed out cold when I was on the commode in the ER room. I was in more abdominal pain than I had been the entire time, I could hardly keep from writhing in pain.

When I got to the hospital for my appointment this morning I walked past a spot that my family and I had sat to get some sunshine once when I was in the hospital. I was all big and bloated, slumped over in my wheelchair with my yellow mask covering my face so I wouldn't catch anything outside. I couldn't sit in the sun or look at anyone in the sun, my eye sight was all messed up from the medications. But I was happy to be able get some fresh air. It was one of the first times in a long time I had been outside of my room.

Anyway . . . it was quite a trip down memory lane this morning. I was keenly aware of the state of my health today - GOOD! I am thankful.

When I signed in for my appointment in the OB clinic I started to cry. Jeremy got a tissue for me. He asked what was wrong. "I don't know. I'm just emotional," I told him. There was just too much going on inside my head.

This was my first time meeting Dr. K. When she came into the room she said, "Well you have quite an extensive history here, don't you? Some of the doctors saw your name on the appointment list and one of them said to me, Oh, she tried to die on us last year. Something about her saying that validated my experience for me. I wasn't just a number. I was a person with a unique experience that people cared about and remembered. It would have been hard for me to be there and feel like they didn't know me. My experiences there, in that hospital, changed my life forever. I guess it's just another example of a way that I need others to be a witness to what I've been through.

So Dr. K was amazing and spent a lot of time (probably 45 minutes or more) talking with us and answering our questions. Here is what I recall:

*About getting pregnant: She said that because of my age and situation, she would recommend us trying for six months (if we decide to try again), and if nothing happens, to come back and see Dr. H, a specialist who could help us. She said that yes, scar tissue around my ovaries and fallopian tubes is the main reason getting pregnant might be difficult. However, when she did her oh-so-fun exam, she said that my uterus felt like it was not stuck in place by scar tissue, and that she could feel my ovaries too, which was good.

*If I were to get pregnant: She said that I would be considered high risk and that they would watch me "like a hawk." She said that there is a perinatal specialist (I think that was her title) she would suggest I see (Dr. M) if I felt comfortable doing so.

*About the medications: She said the antibiotics I am on are typically ones they avoid giving to women who are pregnant, especially in the first trimester of pregnancy. She said she would talk with Dr. T about other possibilities that would work for me. She said the same thing about the conscious-sedation drugs they give me when I have my dilations. She said not a lot of research has been done about the issue yet, and that we would really have to weigh risks and benefits. She said research shows that many pain medications can be okay during pregnancy so long as they aren't taken on a long-term basis.

*About the pregnancy itself: She said that she would do some research to see if there would be additional vitamins I would need to take since I don't have a colon and have a more difficult time with absorption. She said there were no guarantees about other issues arising like the UC did if I were to become pregnant again. We both understood that. She said the issues that I had carrying Harper were not issues that would carry over into this pregnancy though. She said from what she knew, the ultrasounds that I had with her showed she was developing normally.

*About the delivery: She said that she understood Dr. T's concern about pressure and trauma. She said that another option, other than a c-section would be to do an assisted delivery (I don't remember the exact term she used). Basically, she said my body would still do all the dilating, labor, etc. I would get an epidural and all the drugs to make me nice and comfortable. Then, when it came time to push, they would use forceps to take the baby out so I didn't have to do any pushing. She said that if after consulting with Dr. T we all felt like a c-section was the best option, then we could absolutely do a scheduled c-section, and that Dr. T could even be present to take a look inside while we were at it.

Other than that, she said my situation was unique and she wanted to do some more research. She took my e-mail address and said she would e-mail information as she found it. I liked that. Every doctor I've seen (GI, PCP, OB) have all said, "Well, you have a unique situation. I'll need to do more research." But I really haven't heard any follow-up. I guess it's time to start investigating more on my own too. I know one of my fellow j-pouchers at j-pouch.org (Redheadedmama) has done a lot of reading. I'll have to cyber-talk with her!

Boy, I can't remember if there was more that she said or not. All in all it was very helpful. I started crying when she did my exam. Jeremy did too. But he was there to comfort me and hold my hand. She was very understanding as well. So I came away from the appointment encouraged, but with more questions for Dr. T. Maybe at some point I'll try to see if it's possible to meet with both doctors together (since their offices are near each other).

Wednesday, April 29, 2009

What a mood I'm in

April 29, 2009

I just got an e-mail from an ostomy supply company, soliciting my business. I am trying so hard to live my life without fear, but sometimes I just fail. My mind gets tired of trying to process everything. I am terrified of having to live with an ostomy again. Terrified. I start thinking about it and I well up with tears.

I have had this box of ostomy supplies that I haven't known what to do with. I won't throw them out to the landfill. I put some feelers out there to see if anyone wanted them for free, but I didn't get any takers and I just haven't put much energy into calling other places to see if they want them. And so this damn box of supplies has sat in our hallway for a long time. And I hate it. I hate the box. This weekend we were taking some things to the Goodwill (that were also in the hallway), and my attention was drawn once again to that damn box.

Just writing about the box, I can feel myself getting angry and frustrated and scared. Right now I want to pick up the stupid box and stuff it in the garbage and then kick the garbage can a few times and curse at the top of my voice. Life was hell when I had my ostomy. I would not wish living with an ostomy on my worst enemy. It's not right and it's not fair that anyone would have to live like that.

And yet it hangs out there over me. My own little dark cloud. Dr. T's words, telling me that she will have to do surgery again and I will probably end up with a temporary ileostomy again, possibly a permanent one. And do you know where my thoughts go when I think about? I think about having a baby and holding him/her on my hip and having to worry that his/her little legs are going to mess up my ostomy bag. I don't even think about how happy I would be to have a baby; I think about how I don't know if I could find the will to live if I had to have one again.

Isn't that terrible? Today . . . Ugh, today I was wearing a long linen skirt that I bought when I had my ostomy. I bought the skirt 1) to hide the stretch marks that were on my legs; and 2) because it hid my ostomy bag well. But today as I looked down at my skirt, all I could think about was feeling the bag against me. I've gotten rid of a lot of the clothes I got to hide my bag because I couldn't stand to wear them again. But I kept some of them, because of the fear that I'll have to live life like that again. (Oh geez, we're out of kleenex and now I'm crying and have to use TP for my nose. Lovely.)

I don't know how to make peace with this. I feel like for some reason I need to be okay with living life with an ostomy right now. I also think that I'm a weak person because I would have a hard time living life with an ostomy. And am I valuing others who live full and meaningful lives but just so happen to have ostomies if I have these thoughts/feelings? Am I really being a colon-free bigot? Laugh if you want, but I really am beating myself up over these things. I really do feel like a failure as a human being because of this.

[Okay. I think I need to just take a step back here for a moment. Abby, get over yourself. You are taking yourself WAY too seriously here. You don't want to live life with an ostomy. NO ONE DOES and that's okay. (I think I just need to keep re-reading this paragraph over and over.) I think I've maybe been alone too much lately.]

I know this is going to be a really long blog today, but I'm not done yet. I'm also feeling anxious about my OB/GYN appointment tomorrow. I'm scared that being in the stirrups is going to bring back a flood of memories. (Sorry if that's an inappropriate visual to refer to, but that's what I'm imagining and it's freaking me out.) But as Christie reminded me, if I breakdown at the OB's office, so be it. I've earned the right to breakdown. (Thanks again Christie.)

I feel like there's a lot riding on this appointment tomorrow. This doctor, who I haven't even met yet, holds the answers to my future. Boy, am I being really melodramatic tonight or what? Just writing all this out is helping me see the error in my thoughts. But really, the doctor does have some important information for me. So here are some of the questions I want answered:

1) My surgeon is recommending a c-section if I get pregnant. Have you or other doctors here done c-sections on women with j-pouches (or other shaped pouches - same basic principle)? If not, would you be working in conjunction with my surgeon when it came time to deliver?
2) Would I be considered "high risk" because of my past experience? What does that mean for me as far as the pregnancy goes?
3) Studies I've read say 25% of women who have had a total colectomy because of ulcerative colitis end up being infertile. My understanding is that's because of scar tissue around the ovaries. Is that right? Does that mean that my eggs would still be there and we could possibly do IVF?
4) I'm having pelvic pain. Can you tell me if that's related at all to my reproductive organs? (And please don't dismiss this - the pain is pretty strong.)
5) We didn't have an autopsy done on our baby (big regret for me). Does that make a difference at all in how you would view a pregnancy of mine? [I don't know why I can't let it go that I don't have definitive answers as to what caused Harper's death. I feel like I need definitive answers. But would they make a difference for me at all? No.]
6) In your opinion, is it okay for me to have drugs such as Versed, Fentinal, Cipro, Flagyl, Mesalamine and Celexa during pregnancy? [Boy, for a woman who was eating as much organic as possible, not doing any caffeine and trying to avoid taking even Tylenol during my first pregnancy, this is quite a jump isn't it?]
7) I know that because I don't have a colon, my body is not able to absorb certain vitamins as well as before (or some possibly at all?). Are there supplements I would need to take even more of if I were to get pregnant again (obviously already taking prenatals into account).
8) My UC developed as soon as I got pregnant. Do I have higher chances of another autoimmune disease developing with the change in my immune system caused by pregnancy? (Don't forget to mention the joint pain that started with the UC - Are my chance of full blown arthritis developing greater? Chron's? Vitiligo?)

Okay. I think that's all I can come up with right now. If you've read this entire blog, I'm impressed. Even I'm bored with myself right now. (Do you hear the different tone in my "voice" tonight? What's up with that? What a mood I'm in.)

Tuesday, April 28, 2009

Not my first dream

April 28, 2009

Over the past weekend my mind went to all kinds of places. I usually spend a lot of time fantasizing about my future - a lot. I think I probably do that more than anything else in my alone time. I come up with all kinds of plans and ideas - all kinds.

This past weekend my thoughts turned to our home. After Jeremy and I scattered Harper's ashes last week, we drove through a stretch of the desert to get home taking the back roads. "Wouldn't you love to live out here?" I asked him. I can always see the fear in his eyes when I start asking him "wouldn't you like to . . . " because he knows if he agrees with me we could very well be full-steam ahead on some major life change. He's a good balance for me that way. Anyway . . .

I have this fantasy, I guess it's how I see our future. I picture Jeremy and I with a piece of land out in the desert, just behind the Tucson Mountains (on the west of them). The big backyard would be fenced in so we could have plenty of dogs running and playing back there. The house would be a hacienda style, with our own tiny little pool in the courtyard area, just big enough to jump in and get cool in the summer. The house wouldn't be that big, but we each would have our own room (him for his music, me for my writing), and then a guest room, or really a separate guest house is what is in my fantasy (because lots of places out here have guest houses - I'm not just trying to be fancy). We would wake up in the mornings and sit outside in the courtyard. Our home would be a sanctuary - a quiet, peaceful place. It would be a beautiful place, full of light and animals.

It's so real I can almost taste it. I started thinking through our budget and whether we could afford a move like that. I've already contacted our realtor in my mind and had this conversation with her, "Pat, would you be able to show our house with Django there? I mean, how do you deal with it when there are dogs in the home?" I've thought through all the sacrifices I might have to make living a little further outside of town than we do. I'm picking out tile in my mind (sautillo tile on the floors - tile roof). I'm thinking about what contractor we would use; what of the work we would do ourselves (we tiled all 3 of our bedrooms in our current house). I can picture friends coming over for dinner and sitting at our long wooden Mexican-style table, enjoying the food and the conversation.

So of course what do I do when a fantasy like this becomes so real to me? I start a movin' and a shakin'. I went on-line and started looking up real estate. I got as far as entering the search information on the MLS site and then stopped. I thought about all the energy it would take to do something like this. And I asked myself, "Is this what I really want?" Funny question, right? It obviously sounds like this is what I really want - I get all excited thinking through every little detail of it. But do you know what my answer to myself was? Nope. What I really want, what I wish I was putting all my energy into right now is a baby. I closed out the MLS website and shut down my computer.

I had told Jeremy about my fantasy on our drive back from scattering Harper's ashes. "I could see myself being at peace with something like that, couldn't you?" He said he could. Then he said, "That's a good thing that you can picture that Abby, because if we can't get pregnant, that might be what we end up doing." I guess it's good to have a back-up plan. But when your heart is so set on something, when you have come so close to such a sweet dream being fulfilled, second place feels like you are just trying to fill empty space. It's not a bad dream, it's just not my first dream.

An after thought: I suppose there is nothing saying we can't have both of my dreams, right? Maybe I just don't believe life could really be that good.

Monday, April 27, 2009

Off I go

April 27, 2009

I'm trying to get myself mentally prepared for an OB/GYN appointment that I have Thursday morning. I'm really dreading it. I'm afraid that I'm going to be flooded with emotion and I won't be able to control it. It's just one of those things I'm going to have to suck it up and do. Both Jeremy and I have a lot of questions for the doctor. This is a new doctor too, so that should be interesting. Because the OB who started following me when I was pregnant with Harper was associated with the first hospital I was at, I didn't really have a regular OB through the end because I had to go to UMC where they could treat my disease. This new doctor is associated with UMC. Jeremy and I decided that 1) if we decide to try to get pregnant and 2) are lucky enough to actually get pregnant again, I would want to deliver at the hospital where all my care could be coordinated - OB/GYN, GI, and surgeon. My surgeon has recommended that I have a c-section if I were to get pregnant, but it scares me to be cut open when the lay of the land has changed internally. Like I said, lots of questions.

The Flagyl Dr. T started me on has been helping a little bit, but I'm still having some pelvic pain that is really bothersome. I will probably call her tomorrow or Wednesday and ask about the results of the biopsy. I'm interested to know if I do in fact have pouchitis or not.

An encouraging piece of information, if it happens to be true: Dr. N told me when I saw him on Thursday that he had heard there was a new surgeon at UMC who specializes in pouches. That's something else I'm going to need to investigate. Wow, that would be awesome. Not that I don't already feel luck to have Dr. T who is a colo/rectal specialist. I've always felt really blessed with the doctors I've had.

This evening was a relaxing, enjoyable one. Jeremy and I went out to dinner with another couple who are good friends of ours. (A couple of years ago we took the train from Tucson to LA with them over Thanksgiving weekend - what a BLAST!) We had a leisurely two and a half hour meal. That's the way to do it! But now I'm tired - I don't usually do the weeknight get togethers any more. So it's time for bed. Off I go . . .

Sunday, April 26, 2009

The whole of my life

April 26, 2009

I've been thinking a lot about my blog lately. I started blogging as a way to keep people updated about how I was doing, as a way to process what I was going through, and in hopes of somehow helping other souls out there who may be struggling with grief and loss. I've been wondering how much I really need to do this for myself any longer. Don't get me wrong, I love writing and will continue to write and journal on my own (as I have since I was about six years old), but I wonder how much of what I'm thinking and feeling any more needs to be shared in this type of forum. I'm not exactly ready to stop now, but I'm thinking about it.

I was thinking the other day about how the loss of Harper is something that I think about every day. This has been one of my main outlets for those types of thoughts, and it could most certainly continue to be for me. I've thought, well maybe continuing to write about the thoughts that I have of her every day is a way to show people that the loss is always there. The amount of heartache changes from day to day, but regardless of that, the loss is always there.

I thought about how physically I'm doing pretty well these days. My weight is about normal now (which means I have to stop eating to gain weight - that's going to be tough and not as much fun). I may still have some health issues, but I don't feel sick any more. I feel like I have the same amount of energy I used to have (less a chronological year). While my body image is still somewhat of an issue for me (after all the poor thing has been through), quite honestly, that is an issue that I struggled with before all this happened too!

I guess what I'm trying to say is that life is back to normal for me. If you've been reading this blog waiting for that to happen (because so many people are reading with bated breath, right? smile), then you can stop reading now. I'm still gonna blog for now though. And if you chose to keep reading, just know that when I write about things like thoughts of Harper, or struggling with getting poked and prodded, that is not the whole of my life - that's just what I blog about. The whole of my life is right here in my living room with me, napping on the couch (and one part of the whole is napping on the floor). The whole of my life is setting up the coffee maker tonight so it will go off at 5:30 in the morning and I can wake up with a hot cup and sit in the backyard in the silence. The whole of my life is driving in to work on a Monday morning, looking forward to seeing the wonderful people I work with at a job I love. It's going out to dinner with dear friends in the evening, no agenda, just conversation and good food. That is the whole of my life.

Friday, April 24, 2009

Dilations, biopsies, and meds, oh my!

April 24, 2009

I feel like Wednesday was such a healing day for me. And boy, Jeremy and I have been showered with loving thoughts and the kindness of so many people this week. One dear friend wrote a song about Harper for us and I got to hear it last night. I started crying and just looked at Jeremy in amazement and said, "We are so blessed."

Health-wise I'm doing okay I suppose. I had another dilation today. Dr. T said the opening to my jpouch wasn't as closed up as it had been last week, so that's good. She wants me to come back again in two weeks. She listened to me explain the symptoms I've been having the last few days (watery stools, increased number of BMs a day, pelvic pain, etc.). She said that sounds like pouchitis. She gave me a script for flagyl and said I should take that along with the cipro for the next two weeks. Ick! Flagyl has a horrible taste to it (of course cipro leaves my mouth tasting like metal all the time which is pretty icky too!). But if taking a few pills is going to help me feel better, then so be it!! I won't complain (or maybe I'll just complain this little bit here in my blog). Dr. T took some biopsies while she was inside me to see if I do in fact have pouchitis. I'm placing money on that I do have it. We'll see. She said she would wait till my office appointment with her on the 13th to talk long-term plans (surgery?).

I don't know what got into me today. As I was laying on my side in the procedure room, IV sticking out of my arm, waiting for the drugs and for Dr. T to come in and uncover my backside and begin, I started crying. I just felt so overwhelmed. And tired. The nurse, Micah, was having a conversation with another nurse, but he noticed my tears. He reached for a box of tissues and handed them to me, smiling tenderly as he did so. I was glad he didn't ask what was wrong. I really didn't know. But it felt good to cry, and I was okay after a few moments.

I took my long, post-medication nap after getting home. This evening has been nice and mellow. I'll probably do a little writing and then head to bed.

Thursday, April 23, 2009

A poem about yesterday

April 23, 2009

Yesterday

We were both wearing gray.
One of those things you do,
instinctually,
when you are both in the same mood.
He started unwrapping the box
like he was undressing her.
And I noticed that the wrapping was gray too.
We sat and looked out over the valley.
We both fingered the plastic bag.
"How much do you think is in there?"
"Probably just shy of a tablespoon."
I started crying.
"It's not at all what I thought it would be."
It wasn't soft like the ashes in the chiminea.
It was gritty, like ground up bones and fingernail clippings.
"She had bones."
We exchanged secrets then.
Secrets that lovers share
when they become parents.
"I'm scared to let them go."
"Don't be scared."
We laughed about the Big Lebowski.
The heat from the sun on my back was starting to burn me,
I could tell.
But I didn't care.
I didn't mind the sweat sticking to me under my breasts.
I didn't mind the beads forming on his forehead when I
leaned over and kissed him, wet and salty.
"Are you ready?"
"Not yet."
A few more secrets needed to be shared.
"Okay. I'm ready."
We took turns,
each pouring out our hearts
onto the ground in front of us.
We sat in the silence for a few more minutes.
"I'm ready."
"So am I."

Tuesday, April 21, 2009

The day my daughter died

April 21, 2009

I sat down and wrote out my experience from a year ago. Then I went back through and read it and thought, "Blah, blah, blah. They're just words." I wondered why I felt the need to write it all out yet again. And then I realized that I am desperate inside to prove to the world that I am a mother - I gave birth. I may not have a child to show for it, but I have a mother's spirit. Also, I don't want this experience to be just something that happened to me and my family. This is my daughter's life we're talking about here. That being said, here is my account of what happened a year ago:

One year. I was wondering what that really meant on my drive in to work this morning. It's just a number of days strung together consecutively; all without my daughter in them. It was one year ago today that we found out Harper had died. I was scheduled to go in for surgery the morning of April 21, 2008. Dr. Villar was going to remove my colon. Nothing was helping the disease and I was in a lot of pain. All the doctors felt that surgery, even though I was pregnant, was the right thing to do. I didn't know if I could hold on any longer. But something happened the night of April 20th. My number of bowel movements decreased significantly. If I remember correctly, I only had three or four that night; maybe seven in the 24 hours preceding the scheduled surgery.

Dr. Ismael came in that morning and said that with that kind of improvement, he felt we should put the surgery on hold and try another seven to ten day cycle of treatment. I sobbed. I was in so much pain. "But this could buy more time for the baby," he said. "Then I'll do it. I'll try another cycle of treatment." I couldn't believe the words coming out of my mouth. I was so disappointed that I wasn't going to surgery. I just wanted the pain to be over.

I had asked my immediate family members to be there for the surgery. I was scared; my health was so bad, I was afraid I wouldn't make it out of surgery. My body was struggling to hang on. I wanted my family with me; I needed them there. My mom, dad, and brother were there that morning. My sister was flying in the next day (April 22nd). The OB team had said they would be present for the surgery in case they were needed. They said they would do an ultrasound before the surgery and immediately after to make sure everything was okay with Harper.

The OB team came into my room bright and early with the ultrasound machine and we explained to them that we were putting off surgery for the time being as I was starting to improve. "Well as long as we're here, let's do an ultrasound anyway," the doctor offered. My brother and my dad left the room. I asked my mom if she wanted to stay with Jeremy and me so she could see her granddaughter on the screen, so she stayed in the room. I pulled up my hospital gown, my stomach was full of stretch marks and was huge and sloshy. They squirted the jelly on my stomach and started moving the Doppler around.

Doctors had been trying to do ultrasounds on me to look for blood clots recently, but because I was carrying so much fluid they couldn't see a thing. I knew the ultrasounds were not really getting the job done, so I wasn't very concerned when it took the OB some time to find Harper. But then there she was, up on the screen. I breathed a sigh of relief. She was still there. The OB kept moving the Doppler around. "Just a second. I'm going to go get someone else for some help," she said. Suddenly I was afraid. I asked my dad and Jason to come in the room. "I guess she's having a hard time finding the heartbeat." In my mind though, as long as Harper was there and I could see her, she was okay. She hadn't gone anywhere.

Everyone was quiet as the OB came in with another doctor. She pointed out Harper's spine on the screen. "This is her spine, and this is her chest cavity. And this here is where her heartbeat should be." She kept moving the Doppler around. I didn't get it at first. Then I heard my brother, who was standing behind me, start to cry. Oh my God. She's telling me my baby is dead. "Could you please stop now?" I asked as she kept pressing on my stomach, trying to find a heartbeat that wasn't there.

I don't remember a lot about the rest of that day. I was in a fog. I know there were lots of tears and sobbing. And I had this sense of determination. I wanted the dead baby out of me. I didn't want to walk around with her inside me anymore. I wanted to be unconscious. I just wanted it all to be over. I wanted out of the hospital. I wanted to stop having diarrhea. I just wanted to go home and go back to my life before. Please, please couldn't that happen for me?

The OB told me I could wait a couple of days to deliver the baby, but I didn't want to wait. I wanted to get it over with. (There is a whole other story to tell about the decision to deliver Harper instead of have her evacuated, but I'll tell that one at a different time. I really don't want to go into that right now.) That night, April 21, 2008, they moved me to the labor and deliver floor and started the inducement process. They put all these little sticks up inside me that were supposed to open my cervix and help the mucus plug loosen. I really don't remember that night. I think because I was no longer carrying a living baby they were allowed to give me other medications and stuff ("stuff" being that I was probably in shock). I remember sleeping a lot that night.

I don't really remember the day of April 22nd either. My memory starts with the evening of April 22nd. They had hooked this contraption up to me that was weighted down to help the mucus plug unplug. They gave me an epidural somewhere in there. (I remember that.) And I remember being hooked up to the computer that tracked my contractions. They were giving me whatever medication to induce labor.

I was just laying there, waiting for my body to do what it needed to do. (I should tell you that in February of 2008, Jeremy's mom had open heart surgery. She was having lots of complications and was also in the hospital, just an hour and a half away from us for much of the time I was in the hospital.) Minor contractions had started. My brother was sitting with me in the room. Everyone else was somewhere else. Suddenly I realized that I had seen Jeremy walk out of the room in a hurry. "Where's Jeremy? Is something wrong with his mom?" I asked Jason. "You need to ask your husband that," he told me and left the room to go get Jeremy.

Jeremy walked in the room with a somber expression on his face. "What happened Jeremy? Did something happen to your mom?" I asked and started to cry. "Abby, my mom passed away tonight," Jeremy said and reached over and held onto me. We both sobbed. I couldn't believe this was happening to us. I told him if he needed to go be with his dad he should go. He told me he couldn't leave me right now; we needed to focus on getting through the delivery okay. He said he told his family he would be thinking about them, but that he could only deal with me getting through the delivery right now. He said he would call them as soon as he knew I was okay.

My family couldn't believe that all this was happening to us. "You can't make this stuff up," Jason said.

The room was dark, just the light above my bed was on. I was sitting up high on the bed. I felt some cramping start to happen. The OB came in and checked me and said it looked like it could be another twelve hours or so before I was ready to deliver. I'm guessing that was around 9:30 or 10 p.m. Everyone but Jeremy went home to get some sleep. My sister's flight was due to arrive and she was going to pick up my mom from the house and come to the hospital to see me later that night. Jeremy was going to stay the night with me in the hospital room.

Not long after that I told the nurse I was having some cramping, and could I get more pain meds? She sent the anesthesiologist in. Sara and my mom arrived. The anesthesiologist gave me another bolus and I told him I felt some pressure between my legs. He went to get the OB and when she came in she said sure enough, I was ready to deliver. I told Sara and my mom to stay with Jeremy and me, so they did. It was just one strong push and Harper was born at 11:20 p.m. Someone called Jason and my dad and they came right away.

Everyone was so quiet. A man came over and asked me if we knew what the sex of the baby was. I told him we were told it was a girl, "Harper Lee Cashman." He said that was right. They asked if I wanted to hold her and I said I did. The sweetest nurse gently cleaned her up. My sister took pictures for me. It sounds strange, but I knew I would want pictures. By the time Harper was cleaned up and ready for us to hold her, my whole family was there.

We all took turns holding her. We inspected her feet and her legs and her tiny little arms. We cried and laughed. We commented on who she looked like. My family left Jeremy and I alone to look at her together. I could feel the heat coming from her body, and realized that really the heat I was feeling was from my own body, still left over in her. We told each other that Grandma Cashman was in heaven taking care of her. We cried some more.

That was the night of Harper's birth, April 22, 2008. It was the most sacred night of my life. It was the most bittersweet thing that has ever happened to me. That little girl changed my world forever.

You should know that we found out the next morning that Jeremy's mother was alive. He had gotten word of her dying just before they were able to resuscitate her. The next morning when he was able to call and find out how his family was doing, they told him she was alive and in the hospital. I still like to believe that Grandma Cashman was there to welcome Harper and look after her for those few moments that their spirits may have been together.

Thank you for sharing in the memory of Harper with me. I feel like by sharing her story I am giving witness to her little life; making it more real to me. Peace to you today.
Abby

Monday, April 20, 2009

Goodnight for now

April 20, 2009

I'm sitting in my writing room, one lamp on behind me, the ceiling fan whirring above me. I was resting my head on the back of the couch looking up at the fan and listening. The whirring of the fan sounds just like Harper's heartbeat. I can't believe it. I wonder if I'm having auditory hallucinations? We have her heartbeat on CD somewhere. I'm sure Jeremy knows where it is. If I were to hear it right now I would sob.

I'm empty. I could sit here and try to think of crafty things to say to describe what I'm feeling, but I'm not going to tonight. Tonight I'm just going to say goodnight and give myself some emotional space to think and to feel.

So goodnight for now.

Sunday, April 19, 2009

Stew

April 19, 2009

I haven't been feeling great lately. I'm in denial. Yesterday Jeremy suggested that I ask for Fridays off at work again because it seems like I'm going to need to have the time available to have dilations done again. I really just want to complain for a minute. I've been trying so hard to stay positive, but I'm feeling pretty discouraged right now.

I'm sick of this whole ordeal. I'm sick of having to go to the hospital, get stuck with needles and IV's, and then have what is really a quite painful procedure done. My doctor is literally tearing open scar tissue that's inside me when she does the dilations. It hurts. And I'm tired of experiencing the pain. I'm dreading having to do it again. Drugs can only take care of so much.

I'm having more pain now too. I just want to be done with all of this so I can move on, but my body doesn't seem to be where my mind is.

But what's really underneath it all is that Harper's birthday is this week. A year ago tomorrow, April 20th was when I believe I experienced her spirit leaving my body. We found out on the 21st that she had died, and I delivered her on the 22nd. It was the worst night of my life. It's not fair that a woman should have to give birth to a dead baby. It's just not fair.

My little girl weighed 14 ounces. She was formed perfectly. I pushed her out of me in one strong push. There was no cry. There were just somber faces looking at me with controlled fear. I was numb. I couldn't believe it was happening to me. My whole life was completely out of my control. Part of me just wanted to move on; not to deal with her. I had been sick for so long. I just wanted to get my life back; to feel better again.

I felt all trapped inside myself. I didn't even have time to grieve for her. It was just a couple of weeks after her birth that I had surgery to have my colon removed. I was in the hospital over Mother's Day last year. My colon had just been removed a couple of days before. I was learning how to empty my ostomy appliance and how to care for the part of my intestine that was sticking out of my abdomen before they sent me home. I sobbed and sobbed and sobbed in that hospital room. No one knew what to do with me.

When I think about all of this, I feel very angry. I'm angry at how helpless I am; how helpless we all are at the circumstances that life throws us.

I have this conversation going on in my mind as I write this. Things like, "But there are people who have it worse than you Abby," or "Look how far you've come!" But honestly, I just don't want to talk myself out of what I'm feeling right now. I guess I want to wallow a little bit. Tomorrow I'll give myself the pep talk that I need to focus and find peace. Tonight - tonight I just want to stew in the anger a little. Sounds like fun, huh? Bet you wish you were here!

Saturday, April 18, 2009

Saturday morning

April 18, 2009

I fell asleep earlier than I was planning on last night. I guess that's a good thing. I'm not feeling so great, but I'm just so tired of dealing with it I'm almost stymied. The dilation I had on Wednesday didn't take at all. I'm going to have to go back to have another one, and soon. I'm also worried that the Cipro isn't working any more. I've had an increase in the number of times I go to the bathroom during the day and this pelvic pain is getting pretty bad. Ibuprofen doesn't touch it. But I'm not as miserable as I was before I had this stretch of feeling good. I'm thankful for that.

I got up in the night to use the bathroom. When I crawled back into bed I curled up on my side. I thought about how when I had my ostomy I had to get up so many times in the night to empty it and I couldn't really sleep on my side at all. I always had to sleep on my back. Whenever I have memories of living with the ostomy, this strange thing happens to me emotionally. It's like I'm relieved that I don't have it any more, and I want to let myself experience the gratitude and relief, but I can't even let myself go there because I don't want to remember. It was so hard to live that way. And then the next step is usually that fear sets in that I'm going to end up with an ostomy again (which is possible).

Last night I laid in bed and just kept saying to myself, "You can't control the future Abby. There's no reason to live in fear right now." But I am scared. Every time I don't feel well I get very scared that Dr. T is going to say we can't wait for the next surgery any more and that I'm going to have another ostomy - even a temporary one would be so hard for me to deal with. But I'll do it if I have to - right? I'll do what I have to do. It's just a very hard possibility to have hanging out there in the future. Let it go Abby. Let it go. Ah.

Well, I'm finishing my cup of coffee and have to start getting ready for work this morning. Yep, I'm working on a Saturday - but it's a conference/training, so hopefully it will go quickly and be entertaining!

Thursday, April 16, 2009

Trying to stay positive

April 16, 2009

I had a dilation yesterday afternoon. Dr. T said the scar tissue around the opening to my j-pouch had definitely closed up. Even though they give me drugs to mellow me out and forget the procedure, I remember yesterday. I remember how painful it was. I remember groaning and telling her how much it hurt and asking her when she would be done. She wants me to come back for another dilation in three weeks. Bummer.

I feel a little down today, but not depressed, just down. Maybe I'm just tired too. I've been thinking this morning about Harper's birthday coming up next week. I finally got up enough courage to ask my supervisor if I could work something out so I did not have to come in to work that day. I'm all out of PLT and sick time. She told me I could work on the weekend instead, which is great. I'm so glad. Jeremy and I are going to spend the day together and we're going to go scatter Harper's ashes. Already I'm feeling sad.

We've been talking about whether to try to get pregnant again or not. My surgeon has recommended that if having a baby is something we want to do, we should start trying now (she was pretty emphatic). She said that with every surgery my chances of being able to get pregnant decrease, and I definitely need another surgery. Statistically my chances have already diminished some. She said I could take antibiotics if I got pouchitis when pregnant, and I could get dilations if I needed when pregnant, and I can do the nightly enemas to treat my UC during pregnancy too. It's just a lot to think about though. Dealing with pouchitis, dilations, and UC aren't fun when I'm just worrying about me. I can't imagine having to deal with those things if I was pregnant too. But if waiting till after surgery meant we couldn't get pregnant, what would that be like? There are just so many things to consider. Do I even feel well enough to be pregnant right now?

Today I started getting some lower right side back pain. That together with my lower pelvic pain makes me wonder if I'm getting some sort of bladder/kidney infection. I just don't know my body any more. It's hard to tell. I had thought maybe my j-pouch was inflamed and that's why the pelvic pain (because apparently the j-pouch sits on my pelvis internally), but as far as I can remember (I was a little groggy), Dr. T said it looked okay. I cry a whole lot easier when I'm in pain (smile). And when I'm tired (smile). I just happen to have both those things going for me today. Oh well . . . tomorrow is another day, right?

On my way home from work I was doing a little pep talk, "Okay, think about things that have made you happy lately. Focus on those things. You saw that coyote on the way home from the airport Tuesday night. That was pretty cool. Then you saw that roadrunner on the way in to work today. That was cool too." That was about as far as I got, but I did come to the realization (it's not like this is the first time I've had this realization either) that being out in nature really makes me happy. I feel like I just bubble up inside when I see animals in their natural setting. Hiking in the mountains in the desert always leaves me in a state of wonder too. I love it! Maybe that's where Jeremy and I will go to scatter Harper's ashes.

I want to try to end on a positive note here (because I really need that for myself right now). Sooooo, perhaps I should make a list of things I'm thankful for today:
1) People who are generous enough of spirit to give compliments.
2) Having access to excellent medical care (UMC was rated in the top 100 hospitals in the country recently).
3) That I have enough money to treat myself to Starbucks (Jeremy and I spent $11 at Starbucks this morning - WHAT?! We got baked goods too though, but still!)
4) That I work with such understanding, caring people.
5) That the Internet can connect me to people I might not otherwise get to connect with - ever - so I don't feel so isolated and alone (that's you Marianne!).
6) For pain meds (it's been a rough day).
7) That my dog doesn't bolt when I open the door.
8) Oh man - I was reading about some of the difficulties that my fellow j-pouchers have had to deal with and, without going into a lot of detail, I just want to say how thankful I am that I had the few problems I had. Things could have gotten so much worse. It's okay to be thankful that things didn't get worse - right? That's not coming from a bad attitude is it? Because I really was thankful for that today. God knew what I could and could not handle - he promised and stuck to his promise - thank you God!

Tuesday, April 14, 2009

Work in progress

April 14, 2009

Mom got discharged from the hospital yesterday and I drove her from Eau Claire to Eagan where we landed safely at Sara and Mike's house. Jeremy had made a mix CD for my mom that we listened to on our drive. The drive was very peaceful, and it was oh so good to be out of the hospital and in a home for the night! We watched the Secret Life of Bees last night (great movie - excellent book) before bed. I slept long and hard last night too. Mom is doing really well. She's sleeping a lot, but I think her pain is getting better and she's moving around really well too. Her appetite is not completely normal yet, but that's to be expected.

Jeremy got a hold of Dr. T and scheduled a dilation for me for tomorrow. I'll have to take off early from work which I hate doing, but I have to take care of myself first - that's one lesson I've learned. I'm bummed that I have to have the procedure done again, but at least I'm not feeling as sick as I was in the past when I needed a dilation. I'm just tired - my muscles are a little sore from all the straining I do when I go to the bathroom and am in need of a dilation. And I really do think I have a hernia, which I need to remember to talk to Dr. T about again. It'll be good to take care of this.

I've been doing a lot of reflection being back in the Midwest again. I've been thinking about who I was when I lived here. And you know what I think? I don't like who I was then. Things may have been difficult for me lately, but I actually like who I am becoming as a result. I feel like I'm less self-centered now. I have more compassion. Stupid things that were important to me just aren't important any more. I just feel so much more grounded now too.

I'm on Facebook now. I signed up during some down time in the hospital. I think reconnecting with people from my past also has me thinking; how did people view me as I was "growing up?" I look back and don't really like who I was at all. One of the biggest things I don't like about who I was is that I chose spending time with boyfriends over girlfriends. I was pretty judgemental. I always wanted to be the center of attention too. How self-centered can one be? But maybe that's just a part of growing up and figuring it all out? Maybe I don't need to be so hard on myself. I don't know. I guess what matters is where I am now - who I am now. I'm a work in progress and that's okay.

Monday, April 13, 2009

Patience

April 13, 2009

I am tired. I miss my husband. I miss my home. I miss my dog. And don't get me started on the Arizona sunshine. Ohhhh . . . I'll be flying home tomorrow evening. I love-love-love that feeling of seeing Jeremy for the first time when I get off the airplane. Absence really does make the heart grow fonder.

I saw a little girl in her Easter dress yesterday here at the hospital. Oh she was a cutie. I told mom, "If Harper were alive, I would have gotten her the sweetest little Easter dress and a fluffy stuffed Easter bunny." I pictured myself walking down the hospital hall with her on my hip. It didn't really make me sad to think about it for some reason. It was just an, "Oh yeah. That's what would have been," kind of thought.

I may be eager to get home, but I have found this space of internal patience that I've settled into. I am very happy to do for mom whatever will help her. And thank God for wireless connections in the hospital - that is definitely helping me kill some time. I think I've made some peace with the hospital setting now too. I've been okay; not having flashbacks or anything at this point. My gratitude for those in the healthcare profession continues to grow too.

So let's hope for a good morning for mom so we can head to Sara and Mike's this afternoon and be free of beeping machines!

Sunday, April 12, 2009

It's not all or nothing

April 12, 2009

It's been quite a weekend so far. All these emotions have been swirling around in me. I've been having some problems, just minor ones, health-wise. I've got some lower pelvic pain - which is where my j-pouch is inside me. That worries me. It makes me think maybe my pouch is inflamed which isn't good news. Maybe the Cipro isn't working so much anymore? Also, I'm straining now when I have bowel movements, and I think it's time for another dilation. I got really bummed out when that started happening. I started doing my "all or nothing" type of thinking. Here was my train of thought:

Oh no. I'm in pain again.
I need another dilation.
If I'm not doing well, we aren't ever going to be able to try to have a baby again.
What am I going to do with my life?
What do I have to live for?

So I called Jeremy and I started crying. I was exhausted emotionally. I wanted to be with him. "It's okay Abby. I didn't think for a minute that we were all done with this. You may need another dilation, and so we'll do the dilations when you need them. We've known that. The doctor said that that shouldn't change our plans for having a baby either." It reassured me. I had been telling myself I was all done with this illness stuff. Jeremy hadn't thought that for a minute. He was grateful for the time I've had that I've been feeling good, but didn't imagine that we were done with it.

Spending so much time in the hospital with my mom has really done a number on me emotionally too. There are memories everywhere I turn. Sara, Mike and I went to get some dinner at TGIFridays. On the way there I started crying thinking about the fact that Jeremy had spent twelve weeks in the last year doing what I had been doing for just a few days with my mom; sitting, waiting, worrying - and all in uncomfortable chairs and on very little sleep. I don't know how he did it. I'm touched by the love he has shown me.

Then at dinner I started talking to Sara and Mike about what a good parent Jason is. He plays with his kids all the time. I just don't think I'll be able to be that kind of parent. I started crying again because the thought (yes, I know it's a totally stupid thought, but I had it nonetheless) crossed my mind, "Maybe that's why we lost Harper, because I wouldn't be a good parent." I didn't believe the thought, and I told Sara and Mike that I had thought it. They told me how stupid it was to think that (not in those words - they were nicer about it), but still . . . when you lose a child, those kinds of thoughts pop into your mind sometimes. Then I thought about how much love I have for Harper and when I was focusing on that the fears about parenting melted away.

So here I am, Sunday morning, 10:00 a.m. Wisconsin time. Mom is finally napping after a morning of some serious nausea. Sara, Mike and I are all killing time with our personal computers. The doctor just came in and said that once she gets up and around and has had lunch, she could go home. That is wonderful news.

Thursday, April 9, 2009

Success

April 9, 2009

My mom made it through the surgery with flying colors. Right now, Sara, Jason, Mike and I are sitting in her room in the dark, each with our own portable electronic devices, sitting quietly while mom sleeps. She's in a pretty drugged up state, as is to be expected. I can't even describe the amount of love I feel for her. It's one of those times when words don't do justice.

I'm tired. It's almost 8:00 p.m. here. I'm guessing bedtime will be in the not too distant future, which is good because I've only had three hours of sleep since Wednesday morning at 5:30 a.m. And I'm doing just fine.

Emotionally I've just been trying to hold a quiet, slower space around myself today. There are a lot of feelings surfacing for me, but I feel selfish focusing on them, so I'm just holding them. I'm missing Jeremy something awful. He's the balance that I need. He the partner that I need to process with. In times like this, when emotions are deep and out there, he's the perspective I need, the reflection.

Well, I better get going. They're going to try to get mom sitting up now and I think she might need some cheering (at least I did at this stage!)!

Wednesday, April 8, 2009

A poignant moment

April 8, 2009

Here I am, once again at the airport. Now that I'm just waiting to board, I feel like I can take a deep breath. My mind has been going a mile a minute the last couple of days. I don't even know if I can focus well enough to blog very well today.

I'm still feeling good. Something poignant happened to me yesterday. I had to go to Walgreens to pick up my new script of Cipro (God bless Cipro), but I waited until 7ish because there is always such a long line right after work. I also decided to take Django with me. I love how he tilts his head when I ask, "Django. Wanna go for a ride in the car?" He gets so excited! So I took him with me. Sometimes the drive-through lady will give him a dog biscuit too.

It was a beautiful evening. There were clouds in the sky, which made for amazing colors at sunset, which is just about the time we ran our errand. I had the windows down and the moon-roof open. The breeze was just the perfect temperature (it hit 89 degrees in Tucson yesterday). When I pulled up to the drive-through, the car in the lane over from me had all their windows down too. There were little kids in the car and they were talking to Django. The mother leaned toward me from her seat and asked, "Do you have kids?" "No," I said and smiled. "You don't want them!" she joked. And then I felt a pang. I felt like I had betrayed Harper. "Yes!! Yes I do have a child!" I wanted to yell. But saying, "None living," didn't feel appropriate at the time either. And then for her to tell me that I didn't want them! I know she was just joking, but it is was hard to hear and not respond. "Yes I do!"

I reached over and petted Django. I talked to him on the way home. Such a comfort to me so much of the time.

So in a few hours I'll get to see my sister and brother-in-law. Then tomorrow morning I'll get to see my mom and my brother (and I think one of my aunts too!). It is so good to be with family. God, please let all go well . . .

Monday, April 6, 2009

Giving back

April 6, 2009

I can't believe the day is over already! Where did it go? Well, actually, I know one place the evening went - to my taxes! And now I can breath a sigh of relief - they are done and filed! Woohooo! I think I have a bit of a tension headache now though. I guess that's what the hot-tub is for though, huh? Guess where I'll be going when I finish my blog? (smile)

Doing our taxes was actually a bit of a walk down memory lane for me; looking over our expenses from the past year, the gifts we have been given - all of it. I laughed to myself when I was going through our bank statements and saw "UMC Cafeteria" posted too many times to count. Poor Jeremy lived off the hospital cafeteria food for far too long!

I also came across the bank charge from the funeral home for Harper's cremation. I felt a pang. I felt more than a pang. I felt as though if I let myself, I could sob. It was unexpected, seeing that. There are places that I expect to see her and be reminded of her - her footprints hanging in a frame in our fireplace room - her footprints in my wallet - the tattoo in the mirror - but I'm expecting her in those places, even looking for her there. It's when the thought of her is unexpected that the emotions flow a little more rapidly. I imagine that's the way it will always be.

I'm preparing myself for my mom's surgery. (Mom, if you're reading this, stop reading now - okay? smile I'll tell you about it later. I don't want you worrying about me!) I am very eager to take care of her and love on her and just to give back to her. If you only knew the tender things she did for me. When I was in the hospital she would rub my head and face or my hands while I was trying to fall asleep. She sang hymns from my childhood to me. Oh, and as I'm thinking about it now, Harper was still with me then too - so Harper heard her grandma singing. I love that. She also woke up in the middle of the night when I got up to go to the bathroom and wrote down the times of my bowel movements. That meant she didn't get much sleep.

As the surgery gets closer I'm getting more anxious about whether they will find more while they're in there. But I know I can't control that. It's still so hard. I'm choking back the tears as I write right now. I want my mom to feel as loved as I did.

I have to be honest, I'm worrying a little about my own ability to stay healthy if I don't get much sleep, but you know what? My mom was sick when she took care of me and didn't even tell me. If she can do it, so can I!! I'm not going to worry about that right now. So what if I get a little tired? I'm actually a healthy person right now - believe it or not!! This trip may go a long way in proving to myself that I'm more sturdy than I think I am!! Besides, I'll take Airborne and echinacea and all that immunity boosting stuff this week. I'll be strong as an ox! No fear!!!

So that makes me think I probably should make sure I get plenty of sleep tonight and tomorrow night! That means I'm going to end my blog for today. Peace to you all (if there is an "all" reading this blog). And if you're reading this, please send positive thoughts, or prayers, or whatever you may believe in my mom's way this week. You just don't know how much that would mean to me.

Sunday, April 5, 2009

Shift in thinking

April 5, 2009

Today is the last lull before the busy-ness of the week ensues. It's going to be a busy week too. Tomorrow after work I hope to finish our taxes (I don't usually put them off this long - and they're almost done) and begin packing for my trip to Wisconsin for my mom's surgery. Tuesday I'll finish packing and all the last minute details involved with going on a trip. I leave on Wednesday right from work to the airport. I'll arrive in Minneapolis around midnight on Wednesday. My sister will pick me up from the airport. She and I will catch a few hours of sleep and then head to Eau Claire, WI early Thursday morning in order to get to my mom's before 6 a.m., which is when she's scheduled to go in for surgery.

I'm already picturing the early morning drive from Minneapolis to Eau Claire with my sister. I know we'll get coffee and we'll talk non-stop the whole drive over. It'll be that kind of talking that you do when the sun hasn't yet risen and there are so many unknowns that lay ahead - a mix of tiredness and adrenaline. My brother will be there with my mom on Wednesday night. I'm glad she'll have someone with her. I remember the nights before my surgeries. They were anxious for sure.

The night before my colectomy I actually don't remember that much. I know my dad and Jeremy were there. I really think I was still in shock over delivering Harper. And really, I had sort of prepared emotionally for surgery a couple of times before that only to have the surgery be postponed. I was definitely resigned and almost relieved that there was going to be an end to my pain going into that surgery. I'll never forget Dr. V making sure he was present in the surgery room as they put me under because he knew I would be scared and that I didn't know anyone else there. "I want you to have a familiar face to see as you go under." He's such a kind man.

The night before my j-pouch surgery was almost comical looking back on it now. Jeremy, my dad, and Jeremy's mom and dad were here at the house with us. I had to drink the "sparkling laxative" drink which made me sick. I woke up in the middle of the night nauseous. I had the dry heaves and felt like I was going to pass out. I laid on the cold tile of the bathroom floor, shaking. Jeremy called my dad into the bathroom, worried that we were going to have to go into the ER (that was our response to everything those days). My dad said I was going to be okay, the same thing happened to him when he did surgery prep stuff. Jeremy's mom came into the room and they all helped me crawl into bed. Jeremy's mom rubbed my back until I fell asleep. I remember wanting that j-pouch surgery so bad - the entire week before the surgery I was terrified I was going to catch a cold or strep throat or something and have to have the surgery postponed. I stayed away from people (because of germs) and took benedryl every night to help me sleep and keep me mucous-free!

The third surgery I had was my ileostomy take-down. Going into the surgery I didn't know for sure if the take-down would work. I had to prepare myself mentally for coming to after surgery and still having an ileostomy. I tried not to be anxious; just to accept whatever was going to happen, but there was no kidding anyone that I was desperate to get rid of my ileostomy. When I came to after the surgery I kept feeling my side and asking, "It's gone? No more ileostomy?" The nurses and techs looked at me like they didn't quite understand the significance of it. I found myself wondering, were they just so used to dealing with people with ostomies that it was no big deal to them, or could they really not imagine how difficult life would be with an appliance attached to you and therefore how relieved you would be to get rid of it?

There was always a calm that came over me when I was being prepped for surgery. It was like it sunk in that I was completely out of control here and I could do nothing but trust, and so I did. I remember hearing a story once about how eagles teach their young to fly (whether this is true or not, I don't know for sure, but it's a beautiful example, so I chose to believe it).
Apparently the mother eagle will take the young eagle and fly up high with it on the mother's back. When they reach a certain height the mother eagle drops the baby and the baby struggles and flaps its wings and doesn't get it. Just before it hits the ground the mother rescues the baby and takes it up again and drops it. They do this until the baby reaches the point that it is too tired to flap its wings and struggle. It just opens its wings and then the wind takes it and it learns to soar. The eagle has to learn to let go before it can learn to fly. Maybe that's one of the things I'm supposed to learn through all of this.

I've noticed a change with both Jeremy and I since my health crisis. Before I got sick, I had been a vegetarian for three years. I didn't buy leather products either. I also was almost obsessed with recycling and not wanting to have things end up in the landfill. I read about ways to reduce, reuse and recycle all the time. I worried a lot about how we spent our money - what businesses we were supporting, were we buying locally, etc., etc. All of these things were issues that weighed heavy on me. I know this sounds horrible, but many of those things, I just don't care about any more. Jeremy and I have talked about this. He has noticed the same thing happen for him. Don't get me wrong, it's not like we are now all about trashing the planet or not living mindfully or whatever, but I think we have both experienced this profound sense of what is truly important. Oh, this isn't coming out right!! I think that before all this happened, there was this sense that we were looking for something that was important, and we were putting all our eggs in this basket of a certain lifestyle. There was a lot of judgment around that too - were we doing the "correct" thing or not?

I don't know how to explain it, but now I have this sense of peace about my life that I didn't have before. I guess it's that I know there is an even deeper meaning to my life. There is connecting with people, loving people, giving to them of my time and my love - those are the things that are important to me now. And yes, it's not like that is mutually exclusive of living "green" or whatnot, and it's not like I didn't know those things were important before. But I think for me there has been a shift in priorities in a very profound way. And maybe it's that I'm experiencing firsthand the importance of those things too. I'm a little embarrassed to write about this and I feel that I've done a horribly clumsy job of trying to express what I'm thinking. Maybe I'll write about this more at another time.

Saturday, April 4, 2009

Judge not

April 4, 2009

Today was a full and productive day. I love it that I'm able to schedule visits with friends without worrying about whether I'll be feeling up to it or not.

I wasn't in the best of moods today when I had time to be alone and really think. In fact, there was a moment where I was thinking about my faith and trying to figure out what it is that I believe and I felt really angry at God. It was odd. Maybe angry isn't the right word. No, I think what I was feeling was irritated at God. I'm irritated with God that this whole faith thing is so unclear to me. Why can't he just make things clear and easy? (Because then it wouldn't be faith Abby - yes, I know.)

I've been having all these thoughts about judging others today. The whole, "Judge not, lest ye be judged," verse - I have a new take on that. Stay with me here.

I remember a few years ago reading an article in a magazine, I think it was one of those advice columns actually (no, not "Dear Abby" - smile). The woman who wrote in was asking advice on what to do when she was invited to a baby shower but just couldn't go because she was having problems conceiving. I remember getting really upset about that and thinking, "Are you serious? That woman couldn't enter into someone else's joy just because they had something she wanted?" I even thought about writing in a response to the magazine (I cringe just thinking about it now.). Boy, am I glad I didn't.

I know now, having experienced the loss of Harper, that it wasn't jealousy that kept the woman from attending the baby shower, it was grief. And I have now been in the exact same situation. And I understand what the woman was going through. So here is my new understanding of the "Judge not" verse: I don't think Jesus said those words (I think it was Jesus who said them) to protect us from the judgement of others. I think he said those words because when we judge others, we really do judge ourselves. And that judgment of ourselves makes receiving forgiveness very difficult. I have really beat myself up over not attending the baby shower of a friend. I wasn't even able to buy a baby gift for her. If I had not judged that woman from the magazine so harshly, I would have been able to be more gentle with myself about this whole issue.

I was at Target today and usually when I walk through the store I turn my head away from the baby section as I walk by. I don't even look. Today though, I thought I would test my reaction - see if I have healed enough to look at baby things. I walked over to the end of one of the aisles and picked up the tiniest pink newborn booties. I held them in my hands and thought about how Harper's little feet would have swam in them - they would have fallen off of her, but they were so tiny! I carry in my wallet a laminated copy of her hand and footprints in their actual size. I wanted to pull out my wallet and hold the footprints up to the little booties, but I didn't. I wanted to stop the strangers walking by me and show them my little girl's footprints, "See how small? She was small, but she was complete. Perfectly formed tiny little feet." But I didn't.

I also didn't break down sobbing at Target, which I consider a step in the right direction. I'm healing. I know I am. It's good.

Friday, April 3, 2009

One tough cookie


April 3, 2009

I was reading jpouch.org today and read an entry by a fellow j-poucher that I could totally relate to. He found a medication that helped decrease his bowel movements so that he was only having one BM a night, two or three during the day at work, and two or three in the evening. I have the same type of schedule now. But it got me to thinking . . .

One year ago when I was in the hospital Dr. S wanted me to write down every time I had a bowel movement so we could track whether the treatments were helping decrease the number or not. I hated doing that. I hated writing it down every time. It was horrible. It made me focus on how frequent they were and it totally discouraged me. Nonetheless, I felt it was important to save one of the sheets that we used to track my BMs. I found it in my "Mementos" folder this evening. It just so happens that the dates we were tracking were exactly a year ago.

April 2nd:
12:15 a.m., 12:45 a.m., 1:25 a.m., 1:50 a.m., 2:40 a.m., 3:05 a.m., 3:30 a.m., 3:55 a.m., 4:15 a.m., 4:35 a.m., 4:45 a.m., 5:30 a.m., 6:45 a.m., 7:45 a.m., 8:25 a.m., 8:50 a.m., 9:30 a.m., 10:30 a.m., 10:40 a.m., 11:20 a.m., 11:35 a.m., 12:10 p.m., 12:45 p.m., 1:20 p.m., 1:50 p.m., 2:10 p.m., 2:40 p.m., 3:30 p.m., 4:10 p.m., 5:05 p.m., 5:30 p.m., 6:50 p.m., 7:30 p.m., 8:05 p.m., 9:05 p.m., 10:40 p.m.

April 3rd:
midnight, 12:45 a.m., 2:45 a.m., 4:00 a.m., 4:05 a.m., 6:05 a.m., 7:00 a.m., 7:55 a.m., 9:00 a.m., 9:30 a.m., 10:15 a.m., 10:45 a.m., 11:40 a.m., 1:00 p.m., 1:15 p.m., 2:30 p.m., 3:30 p.m., 4:08 p.m., 5:45 p.m., 6:40 p.m., 7:45 p.m., 8:30 p.m., 9:20 p.m., 10:15 p.m., 11:40 p.m.

It goes on and on (as did I). I had painful cramps each time I went. There was always blood in my stool too, and really it was basically water that was coming through me. Which is why I had to have five blood transfusions and two plasma transfusions while I was hospitalized. When I say that I felt like my only purpose in this world was to have bowel movements; that was all I had the energy for, I'm not exaggerating. This is also why I just couldn't have people visit me. I had nothing in me then. Man, I look back and I can't believe I survived that. I can't believe it.

Today, I am more than my bowel movements. I am a whole person. I work, I socialize, I play. And wow, I'm one tough cookie!! It still surprises me that I had it in me to survive that. But I did, and here I am!!

Thursday, April 2, 2009

One thought leads to another

April 2, 2009

I got a good night's sleep last night! Woohoo! I felt rested today. That makes such a big difference. Yesterday I tried to e-mail Dr. T. I realized that my Cipro would end while I am in Wisconsin for my mom's surgery next week, and I was worried that I would get sick once I go off it. Last Saturday when I missed a dose I didn't feel well. I explained to her my symptoms that started on Saturday (pelvic pain, increase in number of BMs, watery BMs, burning when I have a BM) and then went away when I took the Cipro again. Maybe that was just all coincidence, I don't know, but I didn't want to risk it while I was out of town. So I asked for just one more week of Cipro and she gave me two more months! I was so relieved. She asked that I set up a time to meet with her after I get back from Wisconsin, so I scheduled an appointment for April 29th. I'm guessing we'll talk long-term plans at that appointment.

I've been thinking a lot lately about what it's like to be in pain. A couple of things in particular around that topic. One is that I really think I have a pretty high threshold for pain. Being on the other side of pain gives you a totally, totally different perspective than when you are in it. When you are in the hospital, you get asked what your pain level is all-the-time. You are supposed to rate it on a scale of one to ten. When I was in the hospital I was telling people my pain was a 3 all the time. A 3! I look back now and think, "Come on Abby. You could hardly stand the pain! A 3? Really?!" I was basing the number on the fact that I knew it could get a lot worse. But what I really was feeling was that my pain was probably at a 7 or 8 most of the time.

So today while I was having a bowel movement (lovely huh?), I was thinking about how much pain I was in not that long ago when I would have bowel movements. That was some serious pain too (somewhere in the 6-8 range). But now, being on the other side of it, having come through it and no longer being in pain, it all seems so manageable. Because in my mind I now know there was an END to it. When you are in pain, you are constantly deciding how long you will be able to withstand the pain. If someone had told me a year ago that in one year I wouldn't have any more pain (physically speaking), I believe I would have dealt with the pain much better than I did. Isn't that strange? That's why hope is so important to people who are experiencing pain. You need to believe there is going to be an end. But I never knew, was I just going to be in chronic pain for the rest of my life, or would this get better?

So I was taking this whole thought process to another level too. In thinking about the Crucifixion, I was wondering, did Jesus know how long his physical pain would last? He knew what the long-term plan was - right? He knew he was going to die. I'm not trying to be blasphemous by asking this question. It just really got me to thinking.

So then I took this thought to another place too. I have always thought that the worst way to die would be to be raped and murdered (Gees Abby, give it a rest!). As I was thinking about this whole idea of pain being easier when you know there's an end, I actually became less afraid of dying that way. I thought to myself, "If I was ever brutally attacked, at least I would know an end was coming in the form of death." Somehow that thought made me less afraid.

Those thoughts led me to: I've always had this underlying belief that I have a weak spirit; that I just don't have much fight in me. In moments where fight or flight is supposed to kick in, I freeze. In imagining scenarios (why do I even do that?) I always picture myself being quick to give up. Stories about people who fight to stay alive (remember the guy who cut off his own arm when it got stuck while he was caving?) fascinate me. Is there something innate in us? Where does that come from? Is it something you can change? Could I become a fighter instead of a freezer?

As I was thinking about my blog on my way home from work, I thought to myself, "I bet if there are people who read this blog but don't know me, they have a pretty skewed view of who I am." I was thinking about how happy I've been lately, but I don't know that you'd really know it reading my blog! So let me just tell you a few things about my day today:

*I skipped over the sad songs on the CDs I was listening to.
*I played with Django (our dog) this morning as I was getting ready for work.
*Jeremy and I gave each other an extra kiss this morning before he left for work because we thought it was funny how Django pays extra attention to us when we are being affectionate with each other.
*I laughed hard with some co-workers about a practical joke we played on one of our other co-workers yesterday!
*I made a colon ":" joke at work.
*I treated myself to an iced chai-latte and a caramel apple bar this afternoon.
*I walked up the stairs instead of taking the elevator at the parking garage to get to the third level where I parked.

Wednesday, April 1, 2009

Sad dreams

April 1, 2009

My days have been full and busy lately. It's good. I like it. My nights have been a little restless. I haven't been sleeping very well - not because of health reasons though - so that's okay. Tonight will be a good night, I have a feeling! The night that we went to the wedding I dreamt that I spent a whole day crying over Harper. It was kind of hard to shake the sadness the next day, plus it actually felt like I hadn't slept at all.

So this entry is going to be short tonight. I'm headed to bed pretty soon here. Sleep tight.