Tuesday, December 29, 2009

Appetite

December 29, 2009

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

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

Subsequent thoughts:

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

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

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

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

Thursday, December 24, 2009

Stand your ground

December 24, 2009

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

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

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

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

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

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

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

Wednesday, December 23, 2009

My very best

December 23, 2009

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

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

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

Tuesday, December 22, 2009

Who knew?

December 22, 2009

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

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

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

Saturday, December 19, 2009

My little girl

December 19, 2009

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

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

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

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

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

Sunday, December 13, 2009

A mere 365 days

December 13, 2009

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

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

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

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

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

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

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

Relief is just too simple of a word.

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

Wednesday, December 9, 2009

Support: In the form of a group

December 9, 2009

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

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

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

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

Tuesday, December 8, 2009

The Scene is Set

December 8, 2009

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

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

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

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

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

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

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

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

Sunday, December 6, 2009

The Good Days

December 6, 2009

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

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

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

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

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

Wednesday, December 2, 2009

December 2, 2009

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

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

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

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

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

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

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

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

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

Sunday, November 29, 2009

Acceptance

November 29, 2009

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

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

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

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

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

Isn't this called the acceptance stage of grief?

Friday, November 27, 2009

Peeking through a cracked door

November 27, 2009

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

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

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

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

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

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

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

"And what did they say?" he asks.

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

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

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

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

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

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

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

Monday, November 23, 2009

Thanks for listening

November 23, 2009

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

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

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

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

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

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

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

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

Friday, November 20, 2009

Prison yard scene

November 20, 2009

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

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

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

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

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

Wednesday, November 18, 2009

I am going to do this

November 18, 2009

"Hello. This is Abby."

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

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

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

"Yeah it is."

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

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

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

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

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

"How many people do you typically have?"

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

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

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

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

"Oh that's cute."

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

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

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

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

Sunday, November 15, 2009

My to-do list

November 15, 2009

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

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

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

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

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

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

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

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

Tuesday, November 10, 2009

Why I run

November 10, 2009

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

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

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

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

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

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

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

Monday, November 9, 2009

Update

November 9, 2009

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

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

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

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

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

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

Saturday, November 7, 2009

The dreams of you

November 7, 2009

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

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

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

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

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

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

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

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

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

Friday, November 6, 2009

And still I yearn

November 6, 2009

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

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

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

And still I yearn . . .

Tuesday, November 3, 2009

Nice and easy

November 3,00 2009

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

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

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

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

Saturday, October 31, 2009

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

October 31, 2009

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

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

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

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

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

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

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

Thursday, October 29, 2009

Such small things

October 29, 2009

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

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

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

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

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

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

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

Wednesday, October 28, 2009

It ain't that easy

October 28, 2009

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

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

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

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

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

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

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

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

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

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

Tuesday, October 27, 2009

The Mother's Club

October 27, 2009

I'm feeling so restless these days. I say to myself time and time again throughout each day, "Enjoy the here and now Abby. Don't miss out on the goodness today has to offer." I think what's really happening is that I'm feeling a bit hopeless about the baby situation. The adoption process is just so slow, and it feels like such a long way off, it's hard for me to believe that it's really going to happen. Meanwhile, I sit and listen to the women in the mother's club talk about the trials and joys of parenting, waiting for my time. I'm an outsider for now. Any woman who has struggled with starting a family understands the mother's club. You may have the skills, the love, the knowledge - you may have everything it takes to be a great mother, but until you have the child you have no way of paying your dues to join the club. Maybe the mother's club is a figment of my imagination. Maybe it's paranoia at my pain and loss and desire being plastered on the front of my chest in big red words. Hmmm . . . I just don't know.

So a month or so ago I started on this organizing frenzy in our house, right? Nesting, I think. But I don't know how far to go with the whole nesting thing. Would completely converting my study/craft room into a nursery right now help me feel hopeful, or would it be painful? I was watching Law and Order the other night (I get sucked into Law and Order) and there was an episode where this woman, this crazy woman (who turned out to be the murderer of course!), was setting up a nursery in her home even though she was having a hard time getting pregnant. The show was obviously trying to make her look as crazy as could be, but it kind of made me laugh and kind of upset me all at once. I guess it just made me aware of how society too characterizes those of us on the outside of the mother's club.

Geez, I think I'm starting to sound a little bitter here. I better stop. Sorry.

Friday, October 23, 2009

When Harry Met Sally

October 23, 2009

I've been home sick with the flu today. Ugh. I have to remind myself when I'm sick that I also tend to get a little more emotional and that it's not just that I'm losing my grip on things. That being said, I had a bit of a When Harry Met Sally moment this evening. This is how it started.

I was making some plans for February (Yes, February. I'm a planner, what can I say?), and I realized that in March I will be turning 35. 35. Wow. (If you're a Harry and Sally fan, you probably already know where I'm going with this.) Okay, so that was the first thought in my breakdown movie moment.

The next thought you may file in the TMI category, but if you read my blog, you know that there really isn't too much information that I don't share. So the next thought was about my cycle. It's been a little off, and other than the post-surgery-post-pregnancy-underweight time in my life, my cycle has never been this off. Some posting I read on the j-pouch site months ago kept going through my mind where a woman wrote about going through early menopause. So of course that's where my neurotic mind went, right? What if I'm going through early menopause? You wouldn't think that would be a big deal, especially since Jeremy and I have decided to adopt, but still, the thought caused some fear.

Thought number three followed suit: I'm going to be an older mother by the time we have our baby. Yeah, yeah, I know that my generation is having kids later and later in life. I understand that, but still, this wasn't what I had in mind.

And so were the thoughts that tumbled around inside this fevered head of mine when I talked with my sister this evening. (And here is when the When Harry Met Sally moment arrived.) "I'm going to be 35 soon . . . and I don't have a baby!" I sobbed to her. I think I had as much snot coming out of my nose as Meg did during that scene too. As the sobs kept on coming I felt a little puzzled for a minute because I didn't realize I was so sad about this, but I decided that if the tears wanted to come, I should probably let them (a very important lesson I've learned in this process). And then I realized what this was all about as the words fell out of my mouth and into the phone. "This wasn't how I saw my life," I explained to my sister. Yes. And there it was. That was the loss I was grieving. The loss of the plans I had laid out for myself and my life many years ago. This was not where I was going to be at this age.

I'll admit that the conversation with my sister turned a little negative then. I started complaining. I didn't want to think about all the blessings I've had. No. It was pity party time. There really aren't people who will argue with me when I do the pity party thing. What are they going to say? "It wasn't so bad, losing your baby and your colon." No. I have to reign myself in on my own when I start to pitying myself. But I went there anyway. "Couldn't we just have something good happen to us?! Haven't we been through enough already?" The therapist in me can recognize that this too is grief. It's anger over the loss, and that is normal and healthy and necessary really for healing to happen. I'm just not really comfortable with anger. I feel guilty for feeling angry. But that's a whole different topic. Anyway . . .

Sara managed to talk me down by listening and understanding the helpless feeling I have at not being able to control the things that happen in my life. It felt good to let loose and cry. I guess I got it out of my system. For the night anyway (smile). (It also made me miss my sister a heck of a lot.)

Wednesday, October 21, 2009

Taunting traces

October 21, 2009

I've been following the blog of a new friend who just had her colectomy (step one in her three step process of life with a j-pouch) done a few weeks ago, and I'll tell you what, every time I read her blog I am transported to the darkest time of my life. All I can do is read what she's going through and encourage her. I'm helpless.

Today I read in her blog one line in particular that stuck out to me about her husband helping her get to the bathroom. All day I've been playing out scenes in my head of Jeremy there with me, helping me, encouraging me, holding on to me, and I almost panic thinking about it. God, what did he go through? How did he survive it? There I was wrapped up in my own little world, and rightfully so, I was trying to survive, but there beside me was this man whose experience I will never fully understand.

One scene in particular has been on repeat in my head. There I am sitting on the couch, hunched over, a pile of flesh and bones with a bag of feces attached to me. I feel so completely defeated, I can't even raise my head to look at Jeremy. I know that the woman that he fell in love with is nowhere to be found. I know that it was my confidence that he found sexy. And now, there is no confidence. There is a huddled up child who is afraid of the world because everything hurts so very much. Does he see me birthing our dead baby when he looks at me? I don't even want him looking at me, so I cover my face with my hands and sob. "How can you love me? How will you ever find me attractive again? I don't know if I can even go on any longer. You should just leave me now. Just go. I won't blame you. I will understand completely." They weren't words spoken to manipulate: Tell me how much you love me, how devoted to me you are, how you'll never leave me. No. I was a burden to him and I wanted him to know I understood that and that if it was just too much for him, he could leave. I would understand that too.

But what did he do? He got down on his knees on the floor in front of me so he could look me in the eyes, and he told me that he wasn't going anywhere. We were in this thing together. He loved me no matter what.

It's a tender and sweet and pathetic memory of mine. But today as I replayed it all in my mind, I did not play my role. I played Jeremy's role. And suddenly I panicked. Oh my God, what must he have been thinking? I'm going to lose her? She can't handle this and I'm going to lose her? She's going to give up? He was desperate to keep me going. It breaks my heart to think about that. He was desperate, and I don't know that he really let anyone know what was going on for him. Everything was about me. We both shared the fear that something more was going to go wrong physically for me (because it did time and time again), but it didn't strike me until today how much fear Jeremy also carried with him about my spirit breaking. And not just fear, but vigilance. He was vigilant about my mood and state of mind. Geez, I was really on the edge.

These things, they affect one's psyche pretty deeply. Oh, I just want to purge it all so I can be done and move on already. But there are still traces, faint, taunting traces I run into here and there.

Tuesday, October 20, 2009

The whimsy of the universe

October 20, 2009

I love the peace of mornings. I've got my coffee by my side, Django is laying on the floor and I can hear the rhythm of his breathing. The back door is open (as we often leave it in the morning so Django can come and go as he pleases) and I can hear the fountain in our backyard and the wind chime dancing around. I still feel heavy with sleep and a bit disturbed by my dream last night. Every single night I have incredibly vivid dreams. So vivid that I have a hard time knowing if I actually had certain conversations with people or not. Hopefully when my coffee kicks in I can shake all that off.

I have a GI appointment with Dr. G coming up in a couple of weeks here. Already I'm compiling my list of questions. I tend to get pretty anxious before those appointments, though I think as time has gone by that reaction has lessened. At my last appointment with him we talked about the Cipro I take. He said that if it was helping me then taking it long term was okay by him. He said that ideally taking 250 mg of it a day would be a good therapeutic level to shoot for instead of the 1000 I take. I've tried to go off it a number of times with dreams of being able to be pregnant but that just didn't work. I got too sick. But the last few days I've tried to decrease my amount to 500 mg and I'm noticing an increase in my bowel movements already and that they are more diarrhea-like than when I'm taking the 1000 mg. I hope that's okay.

I just now remembered part of my dream from last night. There were a number of women around me who told me they were pregnant and I broke down weeping when they told me. Everyone looked at me like I was some heartless person, but I couldn't help it.

I don't know what to do with what I'm feeling right now. I don't know how to cope. I so desperately want to be mothering a child. I don't know how long I'm going to have to wait, and I don't know how to reconcile that in my mind. I don't want to deny the desire and pretend that it isn't there. I keep saying, "I'm just going to have to learn patience," but those are just words to me. I don't really know what that means. It could be years. We could be waiting years for a little one. What am I going to do with myself?

I was telling one of my friends that it would be so much easier for me if I were to be told, "You have to go to this class one day a week until you get your baby." I would go to that class religiously for years and it would help me. I would feel like I was doing something. But there is nothing I can do right now. Nothing (that I can think of anyway). I feel so helpless. So incredibly helpless. I have no control. And damn it all, I'm tired of not having control (or at least the illusion of control!).

But this is my lesson, is it not? To be content when I am helpless? To be at peace when I feel desire so deeply? Yeah. And for now I feel like I'm at the whimsy of the universe. I guess I'll keep trying to learn these lessons though. At least it's something to do!!

Friday, October 16, 2009

I understand

October 16, 2009

I stepped out of the shower this morning and looked at the scars covering my body and began to cry. They were not so much tears about the losses I've experienced as they were about all that my body has been through and survived. They were about the strength that I had that I didn't know was there.

These emotions are particularly present right now as I'm approaching another health-related anniversary. October 17th is the anniversary of the creation of my j-pouch (see jpouch.org for more info). One year ago today I was off work preparing for surgery and recovery. It was the one and only time I've actually known that the surgery was coming and been able to prepare for it.

The j-pouch surgery and subsequent hospitalization rank right up there for me as far as having to endure pretty intense physical pain goes. It started with the night before surgery. The "sparkling laxative beverage" (the name still cracks me up) I had to ingest made me sick and I nearly passed out in the middle of the night from the dry heaves and hunger.

I was remembering my mental state going into the j-pouch surgery. Part of me was incredibly excited to have this surgery. It was the first step in what I hoped would eventually be an ostomy-free life. While those hopes ran high, so did the anxiety that my hopes would be dashed. I didn't know if I would come to from the surgery and be told that it was unsuccessful and I would have to live with a permanent ostomy or not. The surgery was a pretty complicated one from what they told me. And at that time, I was still in the midst of my grief over Harper and over the loss of my colon. I remember going into the surgery asking God if couldn't he please just take me? It would have been so easy that way. I would have gone to sleep and never woken up, and that would have been fine with me. That way I wouldn't have to be the one to end things. The grief was so unbearable to me. Thoughts of ending my own life hovered around me constantly. I wrote in my journal time and time again, "Couldn't my family just give me permission to end it all?" "Wouldn't they understand that I just couldn't do this anymore?" "Don't they know how I'm suffering?" Somehow, I held on. I really don't know I did it either. It was a moment by moment decision for me. I turned to people for encouragement and support ALL the time. That was the only way I managed.

I looked in the mirror at the scarred body standing before me and I saw all those emotions looking back at me. How is it that I'm in this place now? How is it that I'm still here?

The hospitalization was a horrible one. Not only did I have a new part of my intestine sticking out of my stomach after the surgery, I also had a PIC line that would stay with me for over two months so that I could do nightly IV fluids at home. I also had a small tube sticking out of the bottom of my incision on my stomach. It was there to suck out any fluid or infection that collected near my incision. And then there was the obstruction I got which required them to stick the tube down my nose and throat so they could pump my stomach for a few days. And did I mention that I was conscious when they did that? Did I mention that I had to swallow that damn tube? Horrible, horrible experience. And when they removed the tube from my incision they told me it wouldn't hurt. I'll be honest with you here, I let an F-bomb fly and yelled at them to pull it out quickly. Then when I was discharged, I started vomiting on my way home, which meant we turned back around and went right back to the hospital (same room even). I was terrified that they were going to stick the tube down my throat again. "I can't do it Jeremy. If they have to tube me again I won't be able to do it. They'll have to knock me out!" Did I already say I was terrified? Because I was. What was supposed to be a 7-10 day hospitalization turned into 13 or 14 days. I hated it. I hated it. I just wanted to be at home.

How did I survive it? Seriously. It was like I turned everything on auto-pilot. That was all I could do. I did what I was told. Don't make me think about anything else. I just barely existed in those days. That was all I could do.

I'm not alone in that either, I know that. I know there are other people who have been or ARE in that place where all they have the energy to do is to survive. I understand. I understand.

Thursday, October 15, 2009

I feel better now

October 15, 2009

I woke up around 4:00 a.m. this morning. After a brief stint of can I get back to sleep or should I get up and enjoy the morning? I decided to get up. So here I sit, waiting for my coffee to cool to a drinkable degree and pondering what I want to write about. I could chit-chat about the goings on of my week or about the upcoming anniversary of the creation of my j-pouch, but what's really going on in my head today is doubt.

I know that every parent has doubts, even while they are actually in the act of parenting (especially while they are in the act of parenting), but yesterday I was plagued by doubts of Jeremy and my ability to parent. I guess that's not an accurate statement. It's not that I doubt our ability to parent, it's that I fear what parenting will do to our marriage. That sounds so grim and like I doubt our marriage, which I don't. I guess it's that my marriage is the most important thing in the world to me and I worry about throwing the balance that we've found off. What if we lose what we've got by adding this new, huge, profound element?

Yeah, yeah, I know what you're thinking: But parenting together could also make your marriage better, deeper, stronger. I know. (Self dialogue: Stop being so negative Abby. Why can't you just relax already?) And usually that's what I focus on, all the wonderful things parenting together will add to us. But yesterday the fears crept in.

But this process I'm going through is completely normal - right? Our marriage has ups and downs right now and it will continue to do so when we have another member of our family. We know how to do this marriage thing. So there will be new factors, new challenges we have to work out together. We know how to do that. We aren't afraid of working on things. Quite the contrary. We both know the work is what makes it so good. So really, we just need to keep on doing what we're doing now. Things will be okay. Or even better than okay, Abby.

Alright. I feel better now. Thanks.