i am a butterfly…

Archive for the ‘Barren & Bitter’ Category

Just got back from my acupuncturist!

My husband and I have been trying to get pregnant for what seems like forever. It will be two years in August. When we started, I thought I would have a 1-year-old by now.

One of the great ironies of my life is that I spent so much energy worrying about unwanted pregnancies when I was younger, and now that I want a baby the body just isn’t cooperating.

We’ve gone through preliminary testing with established Western medicine: semen analysis, an HSG to rule out blocked tubes or malformed uterus. Three cycles of Clomid – a mild fertility drug – which was ridiculous, but my GYN insisted I try it before being referred to a specialist. Everything checked out, and of course the Clomid didn’t work. Clomid is for women who don’t ovulate on their own. I don’t fit that bill.

So, now that we’re through the Clomid, I’m supposed to go back to my GYN for the referral to a reproductive endocrinologist, but I haven’t. Infertility treatments are seriously invasive, so I wanted to try some alternative therapies before moving on to that. Enter acupuncture.

I’ve been seeing my acupuncturist twice a week for the last 4 weeks. He says my hormones are out of whack, and the work he’s doing is supposed to bring them back into balance. In another week or two, my treatment should be complete.

With something like this, it’s kind of hard to tell if it’s working until I get pregnant. There are some ways to measure, though. My acupuncturist uses a probe thingy to check my ear points every two weeks. The first time, the machine went crazy when he reached the hormone ear points on both ears. My initial readings were 60 in one ear and 58 in the other. They dropped to 37 and 39 the second time, and to 30 and 27 last week. Under 25 is normal.

Oddly, I ovulated on day 14 of my current cycle, which is when “normal” women ovulate. Usually, my body isn’t ready to release that egg until day 16, 17, or 18.

I have no idea if this is working, but, if nothing else, I’m enjoying the sessions. The 20 minutes I spend lying there with the needles in – 1 in each calf, 1 in each wrist, 3 in the abdomen, and 3 in each ear – is the only time I ever have to just “be.” It’s the closest I’ve ever come to being in a meditative state.

Okay, enough rambling for now. Here’s an article about acupuncture, in case you want to read more.

I’ve been putting off writing about this, because I haven’t really felt like examining my feelings about it. If I’m honest, I still don’t, but I know that I need to take a look at them sometime, and since it’s in my head right now, it may as well be now.

A few weeks ago, I went in to Columbia for a saline hysterosonogram. It’s a really simple procedure, where they use an internal ultrasound wand – often known around here as the “dildocam” – and saline introduced to the uterus to get a good image of the uterus. It hurts when the saline goes in and until it’s out, but it’s fast, so the pain is very bearable. Dr. G found a small polyp in my uterus, which he plans to remove via hysteroscopy and send for a biopsy, but the biopsy is standard procedure and polyps are fairly normal, so there’s nothing really to be concerned about there.

While I was in the office, I got the results of some blood work. Interesting to note is that I don’t have any rubella antibodies, which is strange because I distinctly recall getting the rubella/mumps/measles vaccine as a kid, in 2nd or 3rd grade. It was required for school. I guess it wore off, which I didn’t know could happen.

Also interesting to note is that Scott tested positive for syphilis. That gasp you just made? Yeah, that was my reaction, too. But it turns out it was a false positive. When someone tests positive for syphilis, the lab automatically runs a more sensitive test and that one came up definitely negative. Dr. G thinks Scott has some weird antibody in his blood that reacted weirdly with the less sensitive test. It’s funny, because he had the same thing with a Hep C test once: a false positive followed by another test that came up negative. We think that’s related and that this weird antibody he has can screw up several blood tests. Maybe it’s related to the Factor V Leiden, maybe it’s something else. He needs to follow up with his regular doctor to see what’s up with that, though I think a hematologist wouldn’t be out of line, particularly since he hasn’t seen one since he found out about the FVL.

The final blood test result I got is the one I’ve been avoiding thinking about: the MIS test. The MIS blood test measures anti-mullerian hormone and is used to determine ovarian reserve. My result was .04, which is low. It’s a really bad number. It means that there’s a very good chance that I’ll respond poorly to the hormones used to stimulate egg production for an IVF cycle.

Normally, I’d say screw it. I have IVF coverage, let’s give it a shot anyway. But we have to pay for the drugs out of pocket, and the drugs are around $6,000. I don’t have a spare $6k laying around to just give it a shot and then find out that yes, the test was right and my abused little ovary only managed to cough up 2 or 3 poor quality eggs that aren’t even mature. Not to mention, our insurance coverage isn’t as good as it used to be and now it only covers 90% of the cost of an IVF cycle. So on top of the expense for the drugs, we’d be paying for 10% of the cycle out of pocket.

We just can’t afford that for something with such a low likelihood of working.

Donor eggs are our best shot at getting pregnant now, but that brings with it a whole new breathtaking level of expenses. I have no ethical or emotional concerns with donor eggs. I would use them in a heartbeat, faster than a heartbeat, if I could afford it. But I can’t. It’s not at all covered under insurance so everything is out of pocket.

There is the very slimmest chance that Scott’s mother, who seems to have decided that grandmotherhood is important to her since marrying a man with grandkids and great-grandkids, will decide to help us out with this. This is a very slim chance.

So this is how things stand right now. I see my dreams of pregnancy and a tiny baby slipping out of my grasp, and I’m swinging wildly between resigned acceptance that dreams always fail and wanting to take a scorched earth approach to my life. Self-destruction is something I’ve always been really good at, though I’m out of practice.

Either way, I’m so sick and tired of being sad. I’ve been sad for… what?… 9… 10 years? However long it’s been since I first realized that pregnancy wasn’t going to be a matter of simply having sex at the right time. I’m looking for a grief counselor, because I know I need help getting through this. I just don’t know how to stop being sad, how to stop feeling this loss. And how to stop feeling like such a damn failure.

Update: Well, it turns out I was wrong about the IVF drugs not being covered under our prescription plan. Scott just got off the phone with them and it looks like all the drugs we’d be using are actually covered. This changes everything. There’s still a really small chance of IVF working with my own eggs, but at least now we can try it without having to lay out that $6k for the drugs.

Me: I think I need to see a grief counselor. That would help.
Him: Yeah, that’s a good idea.
Me: And maybe if I’m not sad all the time, I’ll be less bitchy.
Him: I’ll make you an appointment!

I think I just discovered why the Universe has seen fit to keep me from giving birth to a child. It’s streams of consciousness like this:

“Dear Prudence, won’t you come out to play… Prudence, that’s a nice name. Prudence Josephine? Prudence Jo? We could call her  PruJo. Haha. CuJo. It’s perfect.”

The Universe, in its infinite wisdom, must have decided that someone like me cannot be trusted with the task of naming a child.

I has them.

I’ve been trying to just push through it, but I’m definitely in the throes of a full blown holiday season funk. It’s a big combination of things, like turning 40 and having a bit of an existential crisis, and also let’s not forget the pregnancy announcements that just won’t stop coming. Put both of those things together and the funk settles in for a long stay.

Turning 40 I could handle on its own, but the pregnancy announcements combined with it are really throwing me off. Most of these pregnancies are women I only know peripherally, so I can mostly ignore them, but a couple of them are really good friends. One of those friends is really sensitive to my situation, and I love her for that. The other doesn’t get it – and really, why should she? – and says things like, “I just felt the baby move! I love being pregnant.” That killed me. Just really killed me. Like laid me down in the street and ran over me with a steamroller killed me.

The thing is, I’m happy for these friends of mine. Happy for the ones who got pregnant after intertility and happy for the ones who just got pregnant as soon as they wanted to get pregnant. I love that I have babies to knit for all of a sudden, even if they’re not my babies. But I’m sitting here surrounded by all these holiday trappings and they all feel empty and meaningless without a child to share them with.

It’s weird, but after all these years, I still can’t really believe I’m infertile. I still think to myself, “This isn’t right. This can’t be my life. This isn’t the plan.” And sometimes the injustice of it hits me in the chest so hard I can’t breathe.

Holidays have never been hard before, other than Mother’s Day and Father’s Day. This year the turning 40 thing being thrown into it all is what did it. I’m 40. Even if I wasn’t infertile, my fertility would be washed up right about now. I don’t have a lot of time left to figure out  what to do. Whatever I do, I want this to be the last Yule I feel this way. Next year, I’m going to be pregnant or in the midst of adoption or I may really just roll over and die.

We have an appointment at Columbia on January 22. That’s the first step. We’ll see what happens next.

Comments are closed on this one because I’m mostly venting and also because I don’t want anyone saying what great parents Scott and I will make or similar comments. I know people mean well and say that to help, but it’s kind of like telling a starving homeless person what a great chef they’d make if they had a house with a kitchen. Just saying.

…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.

All throughout this whole infertility thing, one thing that I could count on is that my cycle is a predictable 24 days. That’s short, I know, and that shortness is the main reason I was always convinced that my problem is, at least in part, a luteal phase defect. Based on the charting and careful monitoring of cervical mucus* I did back when I thought we could get pregnant without radical medical intervention**, I ovulate around day 12, giving me a 12-day luteal phase. That falls 2 days past being completely not viable, but it’s still short of the “normal” 14 days.

But I digress, with all this luteal phase talk.

The point is, my cycle was regular. It was 24 days, always. However, for the past year or so, I think I’ve entered perimenopause. I feel crampier during PMS, more hormonal, have strange episodes of light bleeding mid-cycle, etc. All things that Dr. Google cheerfully assures me are indicators that my body’s fertile time is winding down.***

As an infertile, perimenopause has been a special kind of hell. Not for the reasons a fertile woman might feel wistful about it. I said goodbye to the idea of myself as a ripe mother goddess years ago. No, it’s a special hell for me because my cycle, previously as dependable as Old Faithful, has become unpredictable. I’m sitting here typing this on day 26 of my cycle.

Day TWENTY-SIX, people.

In the past, in those heady early days of my attempts at reproduction, this would have sent me scrabbling to the supply of pee sticks in the closet. This would have had me laying off the wine as I dreamed of how I would tell my mother of her impending grandmotherhood. Now? The very idea makes me laugh with a hearty ho-ho-ho and a hee-hee-hee. Lay off the wine to protect the fragile life inside me? Unless by “life” you mean the unrelenting heartburn with which I’ve been smitten for the past 3 days, I will ho and hee some more at that idea.

And yet…

And yet there’s that rebellious part of my brain, that tiny little corner of my soul that has somehow managed to avoid being crushed and ground into the dirt that wonders. Is it possible? Could it be?

Then I pour another glass of wine and kick back with the 99.764% of my soul that is jaded and caustic and above all realistic and we laugh at that hopeful sliver and plot its complete destruction.

Yeah, THAT is what sucks about perimenopause.

ETA: And apparently, I’ve talked about this before. At least I’m consistent.

 * If you’re one of the non-infertile readers I get around here, I bet you though you thought you could go through life never having heard the phrase “cervical mucus.” I am hear to help with all sorts of things you never thought you’d hear! You infertile types will just read it and move past without a second thought.

** And apparently, we can’t get pregnant even WITH radical medical intervention.

*** To which I say, “If that was my body’s fertil phase, I expect to be a dried and withered husk by the time I’m 42.”

As of today, yes, I do have 7 years behind me.

It’s hard to believe I’ve been doing this blogging thing for so long. And hard to believe how much things have changed, and how much others have stayed the same. Looking back through the old archives, I know that 7-year-ago me would never have thought that she’d be facing 40 and still not have a child. She certainly never would have believed that she’d have to face the cancer thing and go through so many surgeries.

7 years is a long time, and I feel so much older now. Not so much wiser, but older. In some ways, though, I actually feel younger. 7-year-ago me was a lot more boring. She didn’t go out much, she didn’t drink much, she didn’t have any hobbies. I think that, back then, I was still recovering from my wild early 20’s. I know I was trying to fit into a mold of a person I wasn’t, but when I started the blog, I was starting to come out of that. Over the past 7 years, I’ve discovered a lot about who I really am and don’t try to fight it anymore. For the most part, I like me now a lot better than I liked me then.

I know I don’t post anywhere near as much as I used to, but it’s because I don’t have the same intensity in me that I used to. 7-year-ago me was full of passion and drama and ranting. It’s not that I’ve lost my passion for things, but I’ve mellowed. I’m less likely to invite conflct than I used to be, but more likely to d0 something about the things I’m passionate about. Quietly, instead of yelling about it and fooling myself into thinking I’m accomplishing something.

So happy blogiversary to me. Do I have another 7 years in me? Who knows. But for now, I’m happy to keep going, albeit without any regularity.

This has been a really diffcult recovery, which is why I haven’t really posted since the surgery. Today, I’m feeling well enough to sit at my desk long enough to post, though, so it’s time for an update.

The surgery was on December 17 and it went really well. It only took about 2 hours, which is fantastic. (First surgery, 6 years ago, was 7 hours and the second, 4 years ago, was 4 or 5 hours, so 2 is awesome.) The really terrific news is that the cysts really were cysts, not a return of the tumors! Dr. Holcomb talked to Scott while I was in recovery and said the biopsies came back clean, he saved the ovary, and we’re clear to do more IVF if we choose. I couldn’t have asked for a better result.

I had a hard time with the IV pain meds the next day and couldn’t keep any of the liquid diet down, but that eased up as soon as they took me off the IV and I started the percocet. Everything seemed to be going great until Thursday night, when I developed a fever. It wasn’t too high, so they gave me some Tylenol and took a urine sample to check for a UTI. That fever went away very quickly. That was a miserable night, though, because I was still on the IV pain meds and feeling so nauseous on top of being hot from the fever.

Unfortunately, that day they took the bandage off and a few hours later I looked at the incision and noticed that it was red and the skin around it was hot, which meant the incision was infected. They started me on IV antibiotics to control the infection, but the red area around the incision kept getting bigger. So on Saturday, my doctor started opening the incision to look for pus, which he unfortunately found. He had to open half the incision to clean out the infection and irrigate the wound. That sucked. Hard. That was followed with several more rounds of IV antibiotics, but I had another fever overnight that night. So on Sunday, my doctor ended up opening up the entire incision and found more infection. At this point, my nice, neat surgical incision had become a 10cm long, 5cm wide, 5cm deep wound. This wound has to heal from the inside, so they put in a wet-to-dry dressing to keep it open and prevent it from closing over and healing with an abscess.

Finally, on Monday, they set me up with a visiting nurse service for home and released me from the hospital. All told, I spent 6 days in the hospital, when I was expecting to spend 3. My doctor also ordered a wound vac, which came a few days later and has been on for 10 or 11 days, though we’ve had some problems with the nurses not setting it up right. (A topic for another post.)

As a result of the huge wound, this recovery has been the worst of the 3 surgeries. Ironic, because the surgery itself was the simplest. I’m still taking percocet for the pain, which is considerable. At this point after the previous surgeries, I was off pain meds. So healing is slow and my mobility is limited and I spend a lot of time reclined, but I’m getting a little better every day. The wound is down to 9.5cm long, 4cm wide, and 2.8cm deep, as of this morning, so it’s healing well. It looks absolutely HORRIBLE to me, but I’m assured by the nurses that it looks excellent. Beefy red is good, they tell me.

Scott’s staying home one more week to take care of me, which is really good, because I still need him. He goes back to work next Monday.

So that’s where I am. How’s your world?

Holy crap. Has it really been that long since my last post? So much has been going on. I keep thinking about writing things to post here, and then I never get around to writing them.

The most pressing thing going on is the diagnosis from the oncologist, whom I saw on Monday. It’s not pretty. It’s not particularly life-threatening, but it’s not pretty.

He thinks that, given my history, there’s a high likelihood that the cysts are, indeed, tumors. Or that at least one of them is. They’re definitely growing. The largest is now at 10cm, which is about 4 inches for those of you, like me, who don’t cotton to that fancy metric system. That’s big, and there are three of them. The other two are hardly smaller.

They’re large enough that I’m definitely feeling them now. I have some abdominal pain most of the time, and pressing on my abdomen hurts. The other day, I sneezed and peed a little, because they’re pressing on my bladder. Possible tumors or not, if they’re making me pee a little when I sneeze, it’s definitely time for them to go.

The problem with making them go away is two-fold. The first problem is that they’re too big to be removed laprascopically. They wouldn’t fit through the tube. So the surgery will have to be yet another laparotomy, with a third 7-inch vertical incision being added to the collection of two I already have on my belly. It just sucks. I don’t want to DO this again. I’ve been through it twice already and I know what to expect, but I’m still scared and I don’t want to do it.

The second problem is that this oncologist thinks there’s no point in even trying to save the ovary. He says he doubts there’s even any good ovarian tissue left, between the current cysts and the scarring and possible adhesions from the previous two surgeries. And he thinks it will just come back again if we leave the ovary, which means a fourth surgery.

I know he’s right. I do. But it sucks. It just really fucking sucks. I’m only 38. I don’t want to start menopause now. I wasn’t ready to give up the idea of using my own eggs for IVF, either.

The only bright spot is that he’s willing to leave my uterus and cervix, which means that I can still have the option of using donor eggs in the future.

Right now, surgery is scheduled for 12/4.

However, I didn’t really like this doctor. This was my first time meeting him, because the other doctor I was seeing left the practice between the time I had my last ultrasound and the time the results came in. (Nice, right? He didn’t even send out a letter.)  It’s not that the new guy is unkind or seems incompetent. There’s just something about him I didn’t like. I think it was that he wasn’t direct enough, and I felt like I was ripping his fingernails off one by one trying to get information out of him.

Now I want to go for a consultation with my original oncologist, who did my first two surgeries and with whom I am deeply in love. He left the practice while I didn’t need an oncologist and also stopped taking my insurance, but now I have different insurance and it turns out that he does accept the new one. So I’m trying to get an ASAP appointment with him, but his receptionist was out today.

I know the surgery is definite. It has to happen. The only question is do we try to save the ovary and who does the surgery. I want my original oncologist to do it, if I can ever get in to see him. The problem with him doing it is that he told me, straight out, that the next time he has to operate on me, he’s doing a hysterectomy. Ovary, uterus, cervix, and all. The original cancer was staged at IIIa, because he found a nodule on my colon. Given that and the fact that it keeps coming back, he’s probably going to want to go radical. If that’s the case, I don’t know if I still want him to do the surgery, but I like him so much.

So now I’m just trying to hold it together. I’m trying to fake being okay with it all in the hopes that I really will be okay with it all soon. It’s not working too well, but it’s only been a few days.