i am a butterfly…

Posts Tagged ‘ivf’

…because I’m waffling.

When we first started IVF, we decided on a cut off date of my 40th birthday. That was when we were going to call it quits and be done with it all. Then came the new tumor and the surgery and the related complications and I’ve spent the past 10 months or so feeling sort of crappy. Now my 40th birthday is looming in just over a month and I’m finally starting to feel normal again, physically speaking.

A few months ago, we started looking into adopting from foster care. We still haven’t even filled out the application, though, and I know that at least part of the reason for that is that I don’t think I’ve given up the idea of being pregnant. Our IVF experiment was derailed suddenly and violently by the surgery, and I resent that. When we first started talking adoption, years ago, I asked myself “do I want to be pregnant or do I want to be a mother?” and I told myself that the answer was that I wanted to be a mother and that pregnancy didn’t matter. Now I think I was lying to myself. Being pregnant is important to me, and I don’t think I’m ready to lay it to rest.

On top of it all, so far we’ve only used a third of our ART coverage. We still have two-thirds left! All that wasted potential!

So we’ve been talking about it lately and it looks like we’re going to give IVF a few last hurrahs. I’m still waiting to hear back from Scott’s HR rep about a particular coverage issue, so I haven’t made an appointment yet. When we do hear back, I’m going to try Columbia. They have a reputation for taking women who have very little prospects for success and, let’s face it, that’s me in spades. If IVF works for me it will only happen through some arcane dark art. (Or is that arcane dark ART? Ha. I slay myself.) A wing, a prayer, and some duct tape may also be necessary. I mean, my one and only ovary is likely no more than a piece of chewed up, spat out, gristly meat by now, with all the manhandling it’s had over the past 6 years. That is one abused little ovary.

I still want to adopt. I still want to do it through the foster care system. I’m just not ready to do it right now. We need to go through more IVF, wring every penny out of our coverage, before I’m willing to call it quits. And if it doesn’t work, which it probably won’t, I plan to go to a grief counselor to work through it all, and THEN I can move on to adoption. With a lighter heart and knowing that I gave modern science the old college try.

One of the things that drives me crazy is having family members whose interactions with me haven’t evolved from the time I was 13 years old. That was 25 years ago. I think I’ve grown just a little in that time.

And one way in which I’ve grown is that I’m fairly self-aware. I know my own mind and I know what I can handle emotionally and for my stress level. So if I say, for example, that I know I couldn’t handle the stress of being a foster parent while dealing with IVF cycling, you can really trust that I’m saying it because I know myself. If you press it and act as if you know better and keep insisting that I should just take a few days to think about it, you’re not only not helping me, but you’re harming our relationship. I’ll be less likely to discuss my feelings with you in the future and much more likely to shut down when you try to start talking about anything meaningful to me.

I know there are people out there who aren’t self-aware and don’t know their own strengths and/or limitations, but I’m not one of them. I spend plenty of time inside my own head and inside my own heart, examining my feelings and understanding myself. Do I have a perfect understanding? Of course not. Few people do, I imagine. But when it comes to this infertility stuff and things related to children and knowing what I can and can’t handle? Yeah, I’d say I have a pretty good handle on that. That’s not to say that what I can or can’t handle won’t change over time – 5 years ago, I said I’d never try IVF, for example – but those changes take place over years, not after a few days thought.

One thing that should make it apparent to people that Kim-at-38 and Kim-at-13 have little in common is that Kim-at-13 would have thrown a fit when confronted with someone telling her, in kinder words, that she didn’t know her own mind. Kim-at-38 resisted for a few minutes and then gave up. Instead of turning it into an argument, I just said, “Fine. I’ll think about it for a few days.”

I’ve written about this before, about how my family interacts with me expecting me to behave as I did when I was a kid. I just don’t get how they don’t see that my behavior has changed while their expectations have remained the same.

That link, by the way, may be a little intense reading. It’s not really the same as this one, but it’s kind of about the same topic, in a not about the same topic kind of way.

This rambling, all over the place, completely incoherent post brought to you by the letter F.

I haven’t been blogging much lately, mainly because I’m so overwhelmed by being so far behind in the ABC-Along. Every time I think of something I’d like to write about, I think about the letter H and I freeze. Which is nuts, when you think about it, considering that the ABC-Along is meant to be fun! So I’m going to set aside anxiety over that and try to post more often about other things.

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On the knitting front, I was recently struck with a serious case of finish-itis. Yes, that’s finish-itis, not start-itis.Arwen, the hooded scarf, and Scott’s socks are all done. I’m more than half-finished with the crochet border on Lizard Ridge, leaving only the log cabin crazy quilt, which is going to be an ongoing project to use up scraps of worsted. The only thing keeping me from marking things as completed in Ravelry is that I want to get photos of them first.I’ve such a case of fnish-itis that I even just brought my Top Down Raglan Shrug out to the living room to re-knit the sleeves. I’ve never been happy with the straight edge of the bind off and I’ve always wanted to re-knit the cuffs. I added lace cuffs that should have been knitted bottom up and knit them top down, which ruined what should have been a pretty scalloped edge. Since I’m going to re-knit anyway, I may also shorten the sleeves to above the elbow.

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Last weekend, my mother and her husband spent the weekend in the city. We saw them on the 4th – and on Sunday, but on City Island – at the Millenium Hilton downtown. They had a suite there and they got Scott and me a room for the night, so we were able to sit in the room and watch the fireworks over the East River. The windows opened a little, so we were even able to hear the booms. It was really a nice way to spend Independence Day.

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This weekend, we’ll be in Pittsburgh. We drive out on Friday and home on Sunday.Scott’s mother got married in January in a small ceremony with no reception. This Saturday they’re having what I thought was to be their reception, but they’re calling it a family reunion. Scott and I have never met her husband, and this weekend will be inundated with his entire family, so it should be interesting. It’s strange for Scott, since neither he nor any of his three siblings have children – we’re the only ones who ever really wanted to, and Scott’s the youngest of them all at 45 – but his mother’s new husband has kids and grandkids and great-grandchildren galore.I think Scott’s mother is a little, I don’t know, embarrassed maybe is the word, that she has no grandchildren to show off to her husband’s family. As a result, she’s been asking us about the IVF stuff a lot more frequently lately, even though before the new husband, she changed the subject immediately whenever Scott mentioned any of our plans for adoption or IVF. She never wanted grandchildren and was happy before that none of her kids had children. This is a real turnaround, and Scott and I are her only hope. It’s weird, to say the least.

Wait, wait, wait, wait, wait… sometimes it feels like that’s all I do.

I don’t think I mentioned it here, but I went for the oncologist-ordered sonogram on 5/14. The sonogram showed, of course, the cysts that have been there for some time. I just got the results from the oncologist and the results are: there are no results.

He wants me to wait 6-8 weeks and go for another sonogram so he can see what was cysts and what may have been follicles that resolved with ovulation. I was on day 8 of my cycle at the time I had the sonogram, so it’s a pretty good bet that there was a follicle there amongst the cysts.

The good thing, I guess, is that it took so long for him to get back to me with the results that, at this point, it’s 3-5 weeks until the next sonogram. Still, it’s annoying, all this waiting.

I’m moving ahead with the test’s with the new RE finally, though, so that’s something. I have the hysteroscopy scheduled for next Wednesday, along with one of two semen analyses Scott needs to have done. The blood work will be this Wednesday.

I’m really hoping that everything works out with the oncologist and he gives the go ahead for me to start another IVF cycle in late July. If things don’t work out with the oncologist, I suppose we’ll start thinking about donor eggs.

Infertility takes all your hopes and wishes and dreams and dashes them to little bits upon the rocks of harsh reality. After enough of this abuse, hope doesn’t just wither; it’s crushed, smothered, and, finally, thoroughly extinguished.

It’s at that point that you either break under the pressure or become a jaded cynic who manages to avoid being hurt anymore by employing a vicious black humor tempered with a breezy pessimism. I chose the latter. I don’t break.

The thing about IVF is that it requires you to rekindle that hope, over and over and over and over again. And each time it doesn’t work, you’re tossed out into the storm once again and tumbled around till you’re battered and cut and bleeding and raw. Every time you start an IVF cycle, you have to be willing to let that happen to you again.

Sometimes, I wonder if it wouldn’t be easier, less painful, to just make a choice to live child-free than it is to have that tiny flame snuffed so many times. I know I’m not ready for that, and Scott seems horrified by the idea whenever I bring it up, but I wonder if it wouldn’t hurt less.

And it hasn’t even started yet.

I just called to make an appointment for the sonogram my oncologist wants. The earliest appointment they had was for the 8th. Great, said I, I’ll take it. But no, I realized, I start jury duty on the 7th, and it will be at least three days. So I had to make the appointment for the 14th, and just hope I don’t get picked for a jury.

The realization that I couldn’t take that songogram appointment on the 8th made me suddenly realized something else: guess when my new cycle is supposed to begin? If you picked May 8, you’re a winner!

That means I won’t be able to do any of the early cycle tests at the new IVF center, because I’ll be in the Bronx County courthouse all fucking day!

If I have to push these tests back yet another cycle. I’m going to be pissed.

Yesterday, I had a consultation with a new RE I’ll call Dr. Thorough.

His office shares a reception area with, and is associated with, a large acupuncture center. The center is decorated in a very zen way, with low wooden furniture, silk pillows, and Buddha heads. I loved it the minute I walked in.

Dr. Thorough is a very nice man and a, seemingly, very competent doctor. He went through my record carefully and even paid attention to my crackpot theory that my early puberty – first period at 9 or 10 years old – premature grey hair – beginning at the age of 19 – and infertility are somehow linked. He asked why I thought that, and I replied that it was just a weird feeling that maybe it all pointed to my body being older than my actual age. He didn’t think it was a crackpot theory at all, and agreed that it could be a possibility, and so I’m going to have a test called PlanAhead. It’s a blood test that checks levels of AMH, FSH, and Inhibin B and uses them to calculate ovarian reserve. It can’t tell what quality the eggs I have left are, but it can give us an idea if I’m starting to run low, which, since I only have the one ovary, is a pretty good thing to know.

The three cysts that showed on the ultrasound at Cornell are, of course, still there. I didn’t get the measurements, but I’m fairly certain I heard someone in the room at Cornell say “40mm” about one of them. That’s pretty large. Like the doctor at Cornell, Dr. Thorough thinks that, given my history, I really need to see my GYN-concologist and get his blessing before we go sticking more needles into the cysts, in case they end up being something more than cysts. So I have an appointment with the GYN-oncologist set up for next Friday. I suppose we’ll talk about a cystectomy and biopsy. While I’ll be happy to have the cysts or tumors or whatever they end up being removed surgically, I’ll tell you right now that I won’t consent to the possibility of another oophectomy or a hysterectomy until I’ve exhausted all my IVF resources. I simply won’t.

Unlike Dr. Italiano, who seemed to forget it was even an issue, Dr. Thorough takes the Grave’s Disease seriously. In the round of bloodwork to come, he’s going to be sure to check my thyroid function and he sent me information about auto-immune diseases and their impact on fertility.

That’s all the old stuff. I’m a complicated patient already, am I not?

The new thing is that he found what “appears to be a fibroid indenting on my uterine cavity.” No one has ever picked that up before, but I saw it very clearly on the scan when he pointed it out to me. What the hell? I think it may be a really new thing, because I’ve seen a lot of scans of my insides, and I’ve never noticed this thing before. As if I didn’t present enough challenges to an RE!

I really like Dr. Thorough, and he is now officially my new RE. The next step is to begin a series of tests, which include blood tests for:

• the PlanAhead test
• APA (antiphospholipid antibodies)
• ATA (antithyroid antibodies)
• NKa (Natural killer cell activation)
• RIP (Reproductive immunophenotype)

Also, Scott will have a thrombophilia panel – because of his Factor V Leiden mutation, I believe - and a Sperm DNA Integrity Assay (SDIA). I’m going to have a hysteroscopy to check out how my uterus is doing.

So many tests. I’m glad to be getting it done, though.

It’s been too long since I talked about the dildocam, hasn’t it? Trust me, Gentle Reader, you haven’t missed it as much as I have. But rest assured, it makes an appearance in this post, albeit a brief one. 

Today, Scott and I had our consultation at Cornell to talk about doing an IVF cycle there. Let me start by saying I loved this place. I loved the doctor and his secretary; I loved the nurses; I loved the IVF coordinator; I loved the office space.

I just loved everything about it.

Dr. G spent a lot of time with us and made me feel instantly comfortable. He was very thorough with my fairly complicated medical history. He even wielded the dildocam* himself! And he did a breast exam and a pap smear and an internal exam. So much attention, a girl could get spoiled.

Unfortunately, I don’t think we’re going to be able to cycle there. While Dr. G. himself takes our insurance, the center doesn’t take any insurance at all. Since all of the actual IVF procedures are billed by the center, it would be out of network. Our IVF coverage for out of network is only 70%, which would leave a pretty hefty chunk of change coming out of pocket. While I’m grateful to have coverage, whether in or out, we jusr can’t afford to spare that 30% out of pocket.

And so, I think Cornell and I aren’t meant to be.

*There are cysts, of course. You knew there would be, right?

The leftover needles and meds from 2 IVF cycles are completely out of control. My fridge is full of leftovers. Every time I open a cabinet, syringes fall like pointy snowflakes around my ears. I have have to constantly remind myself not to try to catch one on my tongue.

Not to mention, I have several containers full of used sharps sitting on top of the fridge. We never did find anyone who could tell us how to dispose of them properly. It’s all “talk to the pharmacy” who tells us to “talk to the hospital” who tells us to “talk to the doctor” who tells us to “talk to the pharmacy.” It’s a never-ending loop.

I hear Alexis is doing IVF. Why hasn’t Martha come out with a special section on organizing your IVF accoutrements?

We’ve decided to change clinics for our next IVF cycle. I wanted to have consultations at two different ones, but I think we’re just going to go with Cornell. I hear really good things about them, and even just judging by the phone call to make the appointment, they seem a lot more on the ball than Dr. Italiano’s office.

Our consultation is on the 31st, which seems like a long way away, but I suspect it will be like pulling teeth to get my records from the current clinic. Their office people are really bad. They don’t return calls, they don’t give messages to the nurses. This is a big part of the reason we’re leaving them. Honestly, I now wish we’d left after the first cycle, especially since I really think they triggered me too early last time. 10 eggs and only 3 mature?

Now I’m trying to figure out the timing of the next cycle. If my cycle plays out the way it should, by March 31, I’ll be well into my next cycle, too far in to begin an IVF cycle then. That will mean starting around April 18, but I’m almost certainly going to be called for jury duty beginning on May 7. I wish they sent the summons more than 2 weeks in advance.