Saturday, August 25, 2007

Uncomfortable Encounters

So, I just finished this book, Feed, and there is a line in it that has stuck with me and has gotten me thinking:

"She laughed really short and harsh. I didn't think she should joke about that, because you just don't joke about your life. Especially because it can make people really uncomfortable, if you have something wrong with you, and you keep bringing it up in certain ways."

One of the reasons that I don't find myself wanting to talk about my infertility very often is that it seems to make people uncomfortable. And that makes me uncomfortable. They don't know what to say. And I always find myself trying to make light of the situation -- turn it all into a joke. And it never really goes over very well. Joking about it is obviously a defense mechanism in some ways, but just like the saying "if I don't laugh, I'll cry" (is that even really a saying?) sometimes laughing really helps. And so does crying. Before my tubal surgery, I found myself crying and laughing a lot. It became really hysterical to me that I was going in to have my tubes tied so that I could get pregnant. I mean, that's really pretty fucking funny. It got me laughing so hard, I cried. But, it's not the kind of thing that seems to go over very well with others...

Anyway, back to my original point. I think people are often made uncomfortable by other people's problems. I'm not sure what it is exactly, but it's almost like avoiding a situation will make it go away. Or by not acknowledging it, it won't be there? I think this feeling of discomfort makes people try to avoid these situations or people altogether. My guess is that this happens a lot. And that we've all probably done it at some point or another. It's just gotten me thinking. I know that I have felt uncomfortable talking to people (friends) before about some problem that I was having and have realized that I was uncomfortable because they seemed uncomfortable. And I wonder if I have made others feel that way--does other people's pain make me uncomfortable?

Maybe. I hope not. Or I hope that I am at least empathetic enough to listen without letting my own discomfort show. But what about the times when I have not called someone who was going through a difficult time (surgery, death in the family) because I "didn't want to bother them"? Was that really it? Was it really about them or was it more about me? I didn't want to feel uncomfortable. I didn't want to be bothered. I can't say with any confidence whether I have ever acted this way or not. But I know that others have seemed to act this way towards me. And it's got me thinking. If I have ever made someone feel uncomfortable by my own discomfort with what was happening in their lives, or if I've avoided someone for this, I am really sorry. It was about their pain, and I made it into something about me. And that isn't right. Knowing this, I can at least hope that I will never respond this way in the future. People don't always want to talk about their problems, their sorrows. And that is ok. But if they do, someone needs to be there to listen.

Which brings me to another line in the book that I thought was really good:

"You know...this isn't re: the world serving you some meg three-course dump banquet...She's the one who this is happening to. I don't know what you're saying to her? But I hope you aren't sulking weirdly."

Friday, August 24, 2007

My Story - Part 3

I haven’t written in awhile—Frankly, I think the telling of my own story has been depressing the hell out of me. But dammit, I started this story so I’m going to finish it! (Deep breath.) Here goes. Part 3

Now, where was I? Oh, right. IVF. The exciting part. Or, in my case, the incredibly big let-down part. So we went to a new clinic to begin the IVF process. In my impatience, I was hoping that we could begin the very next month, but of course, we had all the pre-IVF testing crap to get out of the way first, so it took awhile before we could even begin. And then of course my body didn’t cooperate right away …but we finally got started October/Novemberish. The day of retrieval dawned bright and hopeful, and we left the hospital feeling great (19 eggs retrieved). It wasn’t until late that afternoon that things started going downhill. I got a call from one of the doctors at our clinic—we’ll call her Dr. #2 (not the doctor who had done the retrieval, Dr. #1). At first it seemed like she was just calling to check in but then she got around to the point of the phone call which was to tell me that there had been fluid in my uterus during retrieval. And that that was bad. Best I could gather from the conversation, Dr. #2 had called to check in on all of the IVF patients and the IVF nurse who had been present for my retrieval mentioned the fluid. Dr. #2 asked if we had been told of this and the nurse replied that she didn’t think so (we hadn’t). So…Dr. #2 told me that fluid in the uterus significantly decreases the chances of a successful implantation and that the fluid was likely caused from damaged tubes (based on my history of ectopics). Her recommendation was to freeze all of the embryos, have my tubes tied, and then move on to a frozen transfer. But, she would verify all of this the next morning after looking at the ultrasound pictures herself.

The next morning Dr. #2 called. She had looked at the pictures and determined that there had been a significant amount of fluid in my uterus during retrieval and in fact, there had been fluid in my uterus 2 days prior to that. Dr. #1 had failed to tell us any of this. With this amount of fluid, our chances of success were likely to be less than 10%. So, we had all 10 of the embryos frozen. We talked to Dr. #2 more in-depth about her recommendations, I searched every site I could find on “fluid in uterus and IVF” and determined that we would go ahead and have my tubes tied and then do a frozen transfer.

At some point, I may decide to write more about some of this, but right now, it just makes me too depressed. Let me just say that I had a tubal and then did a frozen transfer which didn’t work. After finding out that the transfer didn’t work, I wanted to move on to adoption right then and there. I’ve already written a little about that experience , so I’m just going to move right on past that for now.

During all of this time, I found myself pretty upset about how Dr. #1 had handled (or mishandled) my care. I wrote a letter immediately after it happened, but I never sent it. At that point, we were just trying to move on and make the best out of a bad situation. But after a couple of months of thinking about it, we decided to issue a complaint. We worked with a patient advocate at the hospital and eventually had a meeting with the doctor. He was actually very accommodating and acknowledged right off the bat that he should have told us about the fluid. (He of course hedged on whether it really would have made a difference etc. etc. but at least acknowledged that he was wrong not to tell us). Anyway, long story short – he offered us the choice of either another frozen transfer on the house or a $6000 credit towards a fresh cycle. We decided to do the fresh cycle. At this point, I didn’t feel like I could go through much more and we felt like we had been cheated out of the chance to do a fresh transfer, which has the best odds of working. Our clinic’s success rate for fresh transfers is around 50% vs. frozen at 25%. So, that’s what we did. And boy oh boy was that a good decision. First, I didn’t stim well. Then, it looked like there was fluid in my uterus (which they drained during retrieval). Then, after having 11 eggs retrieved, only 1 fertilized. Then, the fluid came back. Transfer cancelled. 1 more embryo to join our other 7 in the freezer.

And so, here we are. One year later. Now what? Having had my tubes tied to prevent fluid in the uterus, the only way I can get pregnant is through IVF. I really wanted to be done with the whole thing – have it either work or not, so that we could move on. But having only had 1 chance of conceiving in the whole last year, I just can’t seem to move on yet. So, we’ll do another frozen transfer. And then….? Who knows? But I do know that this sucks. A lot. K created a little visual display to express how we’ve been feeling and I think it sums up the situation pretty well.

Friday, August 17, 2007

My Story - Part 2

I’ll try to pick up where I left off and see how it goes. A month or so after the ectopic, I went in for an HSG to ensure that my tubes were open. Everything looked fine, and we started trying again as soon as we were able. I got pregnant again that very first month and I knew it immediately. I did an early pregnancy test and because I had learned from my previous experience, I also went in for a blood draw right away. My HcG levels were only 33, but considering that it was still very early, I wasn’t particularly concerned. But before I could even go back in for a 2nd blood draw, I started bleeding. Then it was just a matter of going back in for blood draws to watch my levels slowly drop back down to zero.

We tried unassisted for a couple months after that, but then went in for an appointment with an RE. My initial bloodwork (and K’s semen analysis) all came back fine, so our first intervention was merely a low-dose of Clomid. Which worked. Pregnant again. This time my initial levels were around 850. My follow-ups were around 1200 – only about a 40% increase. But the nurse and doctor did not seem concerned. I, however, was incredibly concerned and totally freaked out, but there was really nothing we could do at the time. It was Thanksgiving, and we were leaving town the next day. I was trying very hard to stay calm (not particularly succeeding, but trying). I did not want to tell any of K’s family what was going on since we still knew nothing for sure. Unfortunately, my lack of drinking was immediately obvious to his sister (and I was even pretending to drink!). Anyway, we got through Thanksgiving and got back into town. I was so worried that I called and bumped up my ultrasound by several days. The day of the ultrasound we were both still nervous, but I had truly started to believe that everything was going to be ok. Wrong again. Nothing in the uterus. Possible fluid by right tubes. All our hopes came crashing down around us once again. Another dose of methotrexate. Weeks of blood draws. Blah, blah, blah.

This time they made us wait 3 months to start trying again. Once again, the HSG showed that my tubes were clear, but this time the doctor took a closer look and saw what appeared to be an irregularity (and/or possible tear) in the right tube. So the recommendation at this point was to be monitored via ultrasound and only try if I was ovulating on the left. The first month we were able to try again, we were on vacation so I couldn’t go in for an ultrasound. We decided not to try. Next month – ovulated on the right, so not able to try. Next month – ovulated on the right, so not able to try. The next month they upped my dose of Clomid and I ovulated on both sides. Try but no success. Same thing the next month. Maybe the next? It really all starts flowing together, so who knows. I just remember that I was scared the whole time that I was going to have another ectopic. I didn’t know whether I was more scared of not being pregnant or being pregnant. I finally decided to stop the Clomid altogether because I hated trying when I was ovulating on both sides and worrying constantly about having another ectopic. We finally decided to look into IVF and made an appointment with a new RE clinic. That was last July. And that is where I will leave off for now. More exciting details in the saga of my infertility to follow soon…

Friday, August 10, 2007

My story - Part 1

One of the reasons I decided to start this blog was because I have been feeling the need for awhile to tell my story. I’ve wanted to for many reasons –but mostly just out of the need to talk about what is/has been going on in my life. My infertility isn’t something I feel comfortable talking about to very many people. But it is something that I find myself thinking about A LOT – in fact, I have found that I am obsessively going over my “infertility history” in my head. So, perhaps if I get it written down and published, I will quit thinking about it quite as much? Probably not, but it’s worth a shot. I expect that this will take me awhile to put down into words, but here is Installment #1:

I’ve wanted kids for as long as I can remember. And one of my greatest fears has been not being able to have them. I believe the fear started when I was 19 – I had an abnormal pap-smear, which although it turned out not to be a big deal and was easily resolved, it really scared me and planted the fear of not being able to have kids in my head. After K and I got married, I knew that I didn’t want to wait too long to start trying. Infertility has been pervasive in both of our families (long story in itself that I won’t go into here), so I didn’t enter into the process of trying with the naiveté that many people do – I was well aware from the very beginning that it might not be easy. On the other hand, I think almost everyone begins the process of trying incredibly hopeful and I definitely was – every month I was sure that I would be pregnant.

But month after month went by with no success. Initially, I wasn’t particularly alarmed. We were trying to be very casual about trying—I wasn’t charting or taking my temperature and I only tried an ovulation predictor kit once or twice (never was able to get those to work right for me). After about 9 months of nothing working and with my cycles getting more and more irregular, we made an appointment with an RE. The morning of our appointment, I got up early and took a pregnancy test, just in case, and it was positive! I woke K up with the stick in my hand. We immediately called the RE to cancel our appointment, feeling rather smug I must admit.

K was so excited he wanted to tell everyone, but the more excited he got, the more scared I got. I just couldn’t believe that it was really real and instead of feeling happy, I felt panicked, and the panic seemed to grow with each passing day. I wasn’t scheduled to have my first check-up until I would have been almost 10 weeks along, but I knew that I couldn’t wait. I made up a reason (told them I thought I had a bladder infection) and scheduled an appointment. I don’t know if it’s normal procedure, or if I just got lucky, but the doctor decided to do an ultrasound. The ultrasound showed nothing in my uterus. My heart, of course, dropped at this news, but at the time, I was willing to convince myself that I was just earlier into the pregnancy than I had thought, and the doctor seemed willing to go along with that theory. He had me go in for a blood draw, to be repeated in two days.

It’s almost funny for me to look back on this whole experience and realize how completely ignorant and naïve I really was. I had not let myself do almost any reading about pregnancy at this point, because I was trying so desperately to stay calm and not obsess. So, I had no idea what the blood test was really for. I didn’t know that HcG levels are supposed to double every two days or so. So the tests results, and the implications of them, came as a complete shock to me and K. I think the doctor expected us to know that the situation was not good when she showed us the HcG levels (something around 650 on Friday to 715 on Monday), but all we knew was that they were supposed to have gone up. It wasn’t until she performed an ultrasound, which still showed nothing in the uterus and a swelling in the right tube, that we realized what was going on. The pregnancy was ectopic, and there was no chance that we were having a baby.

It makes me really sad thinking about myself back then. I can picture myself in that room, crying, K crying. I think I walked around shell-shocked for weeks afterwards. The methotrexate didn’t help, of course. That is one nasty medicine – nausea, cramping, bleeding, diarrhea. And the worst part – you can’t drink when you’ve taken methotrexate, and if there’s one time in your life when you could use a couple stiff drinks, it’s after finding out you’ve lost a pregnancy!

I know that we were lucky that we caught the problem when we did. I wasn’t being monitored and wasn’t scheduled for an appointment for weeks. Had I not gone in when I did, the situation could have gotten very bad. On the other hand though, because I lost the pregnancy as early as I did (7 weeks along, 2 weeks after finding out I was pregnant), I felt as though I didn’t have the right to really grieve. Or not the right exactly, because I was definitely grieving, but I guess I somehow felt embarrassed by how hard it was for me. That somehow because it happened so early it didn’t really count. Embarrassed that I hadn’t realized that something was really wrong – how stupid of me, to have thought that I was really pregnant and really going to have a baby. It’s hard for me to put into words exactly, but I can still call up those feelings. I don’t feel that way anymore, but I can remember so clearly how it felt.

Which speaking of how I feel now…I’m actually supposed to be working (you know, that is what you’re supposed to do at work). So, I will stop for now. Installment 2 to follow soon…

Thursday, August 9, 2007

The Waiting Game

One of the hardest things about infertility for me is the waiting. The waiting and the not knowing. The complete lack of control. I hate not knowing what is going to happen. I hate that I have so little control over the outcome. We have decided to try another frozen embryo transfer. I just have to wait until my next period to start. Will it work this time? We’ll just have to wait and see…

One of the reasons that we started over with a fresh cycle this last time was that I really needed to feel as though we have given it our very best effort before being able to move on. But, of course, this cycle was cancelled without a transfer just like our last, so once again, I feel like we haven’t even really had a shot and can’t give up on treatment yet. What I am not sure of is how I’ll feel if this next transfer doesn’t work. I’ve said that this will be it -- at least for now (see already I have to add in that disclaimer) -- but the thought of giving up and accepting that I will never get to be pregnant is very difficult for me. We are both very open to the idea of adoption, and in fact, after the last transfer didn’t work, we started working towards adoption. If that is our route to a family, I know it will be a wonderful, rewarding experience for us. But, I do have my share of fears and reservations about adoption. Besides the financial concerns (which are big for both infertility treatment and adoption), it is more of the waiting and not knowing and total lack of control all over again and worse.

Three weeks after we first started looking into adoption and had contacted some attorneys, we got a call from one of them. A pregnant woman (due in less than 3 weeks) had come into his office and was considering adoption. He called us. We tried to stay calm, knowing nothing was for sure, but we couldn’t help getting excited. It seemed as though it were meant to be. We moved forward with fingerprints, scheduled (and paid for) a homestudy. And then she changed her mind.

I had told myself over and over again at the time that I shouldn’t be overly disappointed (or surprised) if it didn’t work out and should just be glad to have gotten the call and to know that it was possible to get such a call even without much work on our end. But of course I was disappointed. I also now feel wary of going through that again. We only had two weeks to be excited and dream about the child that we might get – and still it was hard. I just feel overwhelmed and scared by all of it. And I’m sad. And sorry for myself. And sad.

I’m so tired of feeling sad. I’m so tired of waiting. And I’m really fucking tired of not being able to do anything about any of it.