24wk checkup

It was uneventful - compared to last month's.

If you're tired of the CPC stuff, and I wouldn't blame you if you are, skip down to the bolded sentence. I told my OBG that I was still concerned about it (understatement of the year) and she said some things that were reassuring and some that were not. She emphasized that given my first trimester results, even if the CPC were to increase my odds by 100x we still wouldn't be in the range of recommending an amnio. She thinks the first tri blood screening + NT scan are a much better indicator of anything being wrong but then tried to say that ultrasound is not a very good diagnostic tool for T18 which compromised her credibility a little. I have taken some comfort in the fact that T18 is recognizable on u/s and the idea that, if my baby had it, would have shown more signs at the 19 week scan. My research has shown that around 78-80% or higher of T18 babies have markers other than CPCs evident on u/s. So I pushed her on this and asked what signs could have come up that would make her concerned. She mentioned the facial abnormalities like cleft lip/palate and size problems and reiterated that these are 'perfect' with my baby. I think (I hope) what she was trying to say about the u/s is that it can't diagnose T18, not that other signs wouldn't come up.

The more troubling things she mentioned was that "we used to get more worked up about these, but the literature just isn't there and the insurance companies don't cover follow up anymore because there just aren't studies to support it." I don't know about yall, but it doesn't give me much comfort that the insurance companies don't think my baby's cyst is their problem. But again, I can rationalize this remark based on my own research: in the early/mid 80's CPCs were thought to be a normal variant. Period. Then they were found to have a higher incidence in T18 babies than in the normal population and the obstetrics community jumped on the association. Lately the literature (which is there, it's just favorable, typically - I'm hoping this is what she meant - that there's no literature supporting follow up of isolated CPCs not that there's no literature at all) has started to show a very small or no increase in t18 risk with isolated CPCs, especially with a normal NT measurement, serum screenings, etc.

The other thing she said that disappointed me was something like "some parents don't even want to know..." I wasn't listening for part of this and found myself wondering - does she mean they don't want to know about the CPC? or they don't want to know if their baby has a condition that's incompatible with life? I have been very careful not to allude that I have a head-in-the-sand attitude about this. As far as she knows, I want to know it all. Who is she to decide what I do and don't want to know? Especially since she's already done me the disservice of throwing me into this nightmare by telling me about the CPC in the first place. She can't then stop and put her own head in the sand as to other signs. Understanding that there's no real way to get a diagnosis other than an amnio, I want to know everything that comes up because I don't want my hope, whatever its magnitude, to be false. Right now my hope is fairly robust, there really doesn't seem to be any problems with my baby. The anatomy scan was otherwise "normal," fundal height is perfectly on track, great first tri screening. I can feel the kicks getting stronger and movement getting more frequent. I am starting to relax a little bit again. But even if my OBG noticed more troubling signs that would cause my hope to wear a little thin, I still want it to be real. I don't want to glide into labor on this bed of robust hope if there really are indications of a problem. I'm just another patient though, and this pregnancy is going by far more quickly for her than it is for me. So I suppose I really am in her hands and I just have to deal.

She started talking about L&D and whether I had signed up for classes, etc. I asked about whether I would need to fill out a birth plan, thinking of course the answer would be yes. Nope. Her attitude was: sure if you want, but only if you have real specific preferences and needs and gave a few examples that almost sounded as if she was making fun of patients with specific preferences. She apparently doesn't think much of birth plans. I was shocked that she didn't even pretend to care about them but at the same time, I am not a real contrived birth plan kind of girl. I will definitely fill one out to the extent I feel strongly about any of the entries (like no Hep B injection at birth and no episiotomy unless it's necessary), but I told her (and this is the truth) that my 'plan' was very simple and it's to get the baby out safely. This is probably the ONE thing we agree on. That is the goal, all other goals only matter to the extent that that happens. This is one thing I am really giving myself over to. I don't know if I will have disagreements with her approach to L&D down the line, e.g. if they are suggesting induction that I don't want. But right now, I'm not worrying about it.

When she listened for the little guy's heartbeat she noticed an 'acceleration' where the hb jumped from the 140s to the 160s. I've noticed that on my doppler at home and chalked it up to the baby moving around and the frequency differing depending on how far away the heart was to the wand. So much for that theory. Apparently it's a good sign and means plenty of oxygen is getting to the baby. I thought that was interesting.

I also learned that the whole "one lb per week" weight gain recommendation hasn't actually started yet. Oops. Whenever I get weighed the assistant always says "so...you've gained one lb per week, right on track." But during this visit the OBG slipped and said a HALF pound to a pound per week is normal until 28 weeks when the lb/wk ratio becomes official. Hmm....so I've gained a few more than I could've limited myself to. Not a crisis but would've been nice if someone had pointed that out. Maybe I would have resisted some of that chocolate and junk food. Maybe not. In any case, I've gained 10-12 lbs total with the biggest gains in front of me. Since I started at a healthy weight, I'm not worried about any of this per se, but it did make me think about my nutrition plan from here on out a little. Maybe-fruit-tonight-instead-of-ice-cream-for-the fifth-night-in-a-row kind of thing.

I've been taking Expect@ DHA supplements lately (took one-a-day DHA for the first half of pregnancy before realizing that they're fish-based) and asked my OBG's opinion on those. She's a skeptic. Doesn't think it improves brain function, thinks the one study that says it does (by only 4 iq points, btw) are skewed by the fact that it was funded by the industry that sells the pills, and warned me against using them during the last few weeks before birth because they act as a blood thinner. Good to know. I think I'll keep taking them for now because as a vegetarian I get precious little omega-3 otherwise and that seems to be an important nutrient.

Finally, I asked about my DH's awesome veggie/fruit garden. So far in pregnancy I've been too scared to eat anything because of the toxoplasmosis risk. That hasn't been too hard since DH's winter garden is more limited than his summer garden, but now he's starting to put the summer stuff in and I don't think I can go on declining things without explaining to him why I'm being so paranoid. So I wanted to get the real scoop on vegetable gardens during pregnancy. She said I probably shouldn't be working in the soil but that as long as I wash the produce, it should be fine. I'm still dubious. Veggies can be awfully dirty, even when 'washed' which usually entails holding them under the faucet for a few seconds. Especially the ones that kind of sit on the ground like squash, cucumbers, etc. and the leafy stuff that gets dirt stuck in the crevasses....but I don't want to offend DH or deprive myself of tomatoes for three months if there's really no need. If there's one thing I'm looking forward to about the end of pregnancy it's being able to dial down this paranoia a little. It's exhausting.

16 week exam

The appointment went really...cheerfully. Surprisingly.

My OBG was just plain nice. And even conservative...

I mentioned I was concerned about IC and asked if we would be doing anything to check whether I'm "holding up" in there. I have figured out by now that 'playing dumb' is really effective with my obg. She bristles at any indication that I've gone online or done any self-examination (like the doppler). Instead of turning the subject to my anxeity she went through the risk factors and said I didn't have any of them. She repeated that my D&C wasn't a risk factor (she didn't seem to remember our original conversation on this topic which helped me not seem like a crazy person for raising the issue again) and then explained symptoms to look for. When she got to "pink discharge" I got a little dizzy. Sorry for TMI but I actually did have pink (very light, but definitely pink) discharge last weekend. It went away quickly and I tried and succeeded at pushing it out of my mind. But I raised it right then in the office. She asked if it was after intercourse. "Two days after." I responded. She nodded and said that was probably it but then she decided - get this...on her own - to do an internal check. She said everything was fine, totally normal, etc. etc. and warned me that the check itself could cause spotting but said that it wouldn't cause any other problems.

To be honest, I've been less worried about IC this week than I was up until 16 weeks. I know that may not make any sense but it's that whole 'being in the window' concept I blogged about in my last post. I crossed the 16w threshold...and nothing bad happened. I ran around on the beach this weekend (I even fell in the sand)...and nothing bad happened. I'm living my life and the window is passing by day by day and everything seems, dare I say it, fine. Knock. on. wood. I'm almost at a point where I am now more likely to worry about the internal exam causing infection or contractions or spotting or whatever than about IC. Almost. But I did have that weird pinkness...and she did decide to do the internal, it wasn't really a choice. And now it's the morning after and everything seems fine so I'm glad to have the peace of mind. Even if an internal check can't tell the whole story.

She found the heartbeat right away on the doppler. I think she expected me to pass out from relief. Which I didn't, thanks to my doppler. I think my baby will be healthier for me having that doppler, even if I do use it almost every day. There are so many fewer stress hormones swirling around in there thanks to that little gadget. Somewhat perversely, I was hoping she wouldn't be able to find it (but only because I knew it was there of course, having checked that morning) - that her doppler would be to weak or that the baby was hiding or something - and that she'd have to drag out the u/s which would have been a better way to check the cervix. But no such luck. The h/b was loud and clear. I really didn't mind too much, if you know what I mean.

I also raised the breathing issues I've been having (and blogged about under "what I miss" in my last post). She said they were normal and mentioned something that Dr. Google hadn't which is that I'm breathing for two - I have extra oxygen demands and extra carbon dioxide in my system so the whole apparatus is stressed and the process of breathing more laborious. This made a lot more sense to me at this stage than "the baby is sitting on your diaphragm or lungs." It's still so small and based on that explanation, if it's this bad now, I may not survive the next 6 months. But apparently it's all fine, nothing to worry about.

She did show a little of her color by warning me not to ask any questions at my anatomy scan. She said "I'm going to coach you on this. Don't ask any questions. They are trained to be stone faced..." Blah blah blah. "I'll call you a couple days later with the results." Of course that's what she'd say. And maybe they are. And maybe I won't get much out of them. But she did say they might be "ebullient" about the gender so if I didn't want to know I should tell them right away. I DO want to know. Desperately. And if they're going to be ebullient about that, I bet I can get a few more comments out of them. She also said that this particular team of techs has never been wrong on the gender in her experience. Good to know.

My fourth "First Prenatal" appointment

Back to my ol' OBG today. She gave me literature and told me how much fish not to eat. I talked to her about skipping the second tri genetic screening and agreed it was kind of pointless, given my off the charts great results for the first tri screening paired with the fact that we'll be getting a detailed anatomy u/s in the second tri to check the spine (which, it turns out, is the first thing they do if the AFP # comes up abnormal so there really is no point to the lab for me).

I then confirmed that I had had a normal pap last year and asked if we could push the next one until after the pregnancy. She kind of flipped out, which I expected. She said "why don't we talk about the reasons you don't want to do something that would safeguard your health." I blamed anxiety - same sort as is related to the second tri screening. I didn't get into everything I've learned from Dr. Google about abnormal paps during pregnancy and invasive diagnostic follow-ups because I didn't want to get a lecture. But she gave me a lecture anyway, just a different kind. She started asking me about whether I had spoken to anyone about my anxiety issues (she knows I was on zoloft for a while) and made me fill out a mood analyzer test. She started treating me like a mental patient, full on. Asking about anxiety in other areas of my life and suggesting that I could go back on zoloft during pregnancy if I wanted, warning me about post partum depression. Actually, I feel great. Excited. Not depressed. I tried to relay this to her - calmly so as not to incite her suspicions that I am a total nutcase, but I would rather she think I was a total nutcase than yell at me about going on the internet.

Finally she asked "What could possibly have happened that you would be worried about between last year's normal pap and now?" Gotcha.
Me: "Well exactly, I'm not worried about anything actually being wrong. If I hadn't gotten a pap last year, I would be concerned and would want the pap."

She finally got it. And even went as far as admitting that some patients go once every two years and that's acceptable if all prior paps have been normal. And at this point, she had no argument. No pap, no problem. She was almost cheerful about it after she was forced to admit that there was no real point in doing it now.

Eventually she tried to find the baby's heartbeat with a doppler. She couldn't. I got really quiet and - this being in the same room I got the bad news in last year - could not escape the growing sense of doom. She asked if I was worried and of course I said yes. Who wouldn't be. "Sometimes you can't hear it at this appointment. Why are you worried, what could have happened between last week and now!" I don't know. Just about anything I suppose.

Fortunately she pulled out the u/s machine and I got to see my baby. It was really still. It took her a minute but she found the heartbeat visually. We saw it, she pointed it out to me, but she didn't turn on the sound. I wish she had. It would have made me feel even better. The u/s image was too silent. But I did see the heart. Moving. And that's enough for me. The doc tried the doppler again now that she thought she knew where the baby was hiding but she still couldn't get the hb. Ugh.

This all made me think twice about this doppler idea. I know me and I will not be able to concentrate on anything else if I can't find that hb. So maybe I should wait a few more weeks to try it. Or maybe I should never try it.

The office is so disorganized when it comes to scheduling. My first hint was when they failed to give me the first tri screening paperwork. Today they neglected to explain when my next appointment would be and what that would be about. I heard someone say 4 weeks from now. And that they would give me a pee cup on my way out. But they didn't. So I'm kinda on my own right now. On the verge of the second tri. There is probably no additional information that I'll get between now and the whole world knowing. That's a scary thought. Especially if I don't have the doppler to help me along.

I'm pregnant.

I don't know when I'll be able to say those words out loud. To anyone. To accept congratulations. To say it matter-of-factly and not qualify it with "but it's still early." To talk about maternity leave. To get my parents emotions involved. I still don't feel ready for any of this. I think I'll give it a test run with C tomorrow. Maybe.

Ask and you shall receive

Visiting Dr. GO today was on the top shelf of best decisions I ever made. Right up there with marrying DH and adopting my dogs. THANK YOU THANK YOU THANK YOU to all who encouraged me to go as I deliberated last week. You were 100% right and I owe all of my newfound joy to each of you. I came very close to skipping it. Especially since, wouldn't you know, everyone and their mother at work wanted to schedule a meeting this morning. I had to ward them all off, one by one, reshuffling, rescheduling, lots of back and forth, disappointing a few people, mildly. But it wasn't too hard since I've foregone vacation this summer just to make hours. I feel entitled to take a couple hours off. And it's not like I spent the couple hours at a bar by the beach. It was a medical appointment.

There are a couple punchlines here, so without further ado: (1) He effectively eliminated The Wait and (2) he completely, utterly and consciously undermined everything that Dr. OBG said during The Conversation and made her look the fool. Actually, "fool" isn't a harsh enough word. Hateful Bitch is more appropriate.

Here's the longer, more detailed version. My appointment was for 9am and Dr. GO made his first appearance at 9:56. I spent that whole hour praying that it would be worth it, but without much hope. I thought Dr. GO would be stern and consistent with what Dr. OBG had said (she had said that she didn't think there was any chance that The Wait would be shortened by Dr. GO, after all). A nurse practitioner came in at one point to get to know me and my case a little. She was new and told me that the doctors at her prior facility would ask people in my situation to wait for one year. My heart sank. Maybe this was a bad idea.

When Dr. GO showed up, he said some interesting things, from both a personal and medical perspective, NONE of which involved a 7.5 month wait.

First the bad news: He does think I had GTD. He doesn't think a left over piece of tissue or second miscarriage would have had the same pattern of HCG levels as the trend that I had. He said when normal tissue is treated with MTX, HCG usually comes straight down - or pretty close to it. It took over a month after my last MTX injection for my levels to come down. While this is bad news, because it means I probably had cancer (albeit a mild, highly treatable form), it also vindicates my theory that it was not a second miscarriage and flies in the face of what Dr. OBG has maintained all this time.

The good news is he has no reason to think it has any higher likelihood of recurring in the next six months than at any time thereafter. Which means what you think it means - he said we could try again right away!!!
Excuse me? I said....so all these molar pregnancy patients and GTD sufferers are being told to wait 6-12 months for NO reason at all?!? He said the reason for the 6-12 month wait times were (a) solely for differential diagnosis purposes (the need to be able distinguish between GTD and a healthy pregnancy if HCG levels rise) and (b) outdated due to advances in HCG tests and ultrasound technology.

He said the differential diagnosis thing shouldn't be an issue for me because I am "compulsive" enough about my care - meaning I will be in Dr. OBG's office first thing when HCG goes up, I'll get early ultrasounds, and we'll be able to determine quickly whether what I have is a healthy pregnancy or not. No need to monitor for 6-12. He did say that if I had come in with no questions or concerns or desires he would recommend 6 months from the time HCG normalized (less than 2). He didn't understand Dr. OBG's whole 7.5 thing. So where did that come from? Anyway, the reason he would have suggested 6 months was mostly because not everyone is as alert to their conditions as I am (sometimes this condition is never diagnosed since most doctors do not follow their patients' levels to zero after every pregnancy and m/c - even though GTD can occur after ANY pregnancy event) and he wants to make sure he catches any GTD recurrence quickly. A lot of patients won't come in or won't know anything is wrong until "they're coughing up blood, because they just don't know what to be alert for" he said, morosely, "we're not worried about that with you." This was all a pretty big shock, but it makes sense to me because I am painfully aware of the pattern of GTD and what to watch out for. I've also heard that, notwithstanding these long wait times that you always hear about, a patient with GTD or a molar pregnancy is considered to be in "remission" after three normal beta results. So remission occurs in three weeks. Not 12 months. He said my situation is "resolved." He's not worried that this year's case will recur. He said I am at an elevated risk for getting GTD again, but not by much (my risk goes from about 1/1000 to 1/100) and that risk will not change depending on when I start to TTC again. Whether I start tomorrow or three years from now, my chances are still elevated.

So my ticker has flown through time to the middle of November. Why November, you may ask, and not immediately? Well, I have a dentist appointment that involves X-rays on Sept. 2. And, more importantly, I read one study that suggests that if you are treated with MTX, it can be found in your tissue for up to six months (although Dr. GO says that it's mostly out of your system in a few days). So that would put me at the beginning of November.

And I have to admit that I still have this nagging feeling that I should wait longer. Because that's all I've ever read. A good patient would wait the whole time. There are blogs of women on the Stirrup Queen's list that did wait, the entire waiting period - 12 months in one case. Was that really unnecessary? Maybe the research and technology in this area have developed that much in just a short time. Maybe my doctor is just not afraid of lawsuits. I have this impulse that I can't shake to think that waiting a few more months will be better, I will be safer. I have to remind myself that my oncologist is not worried if I start sooner. NOT WORRIED! It's my doctor telling me this! Not a website, not another anecdote, my oncologist. And when I asked him how we should break this news to Dr. OBG, given her conviction that I simply must wait 7.5 months and not ask questions, period, he stopped me by saying "Astrid, do what you want, if you get pregnant, you can tell them that I said you could." It was adorable. And a little weird.

He said, straight up, that the six and twelve month wait times were totally arbitrary, on some level. But he also said that not a lot of research (or research money) goes into the study of wait times after GTD. "It's not like breast cancer" he said. So while he doesn't have any reason to think there's any higher chance of recurrence in the first six months after a zero result, he also acknowledged that there wasn't research supporting the shorter wait time either. And, to repeat, he said the longer wait times were not meant to allow for the risk of reocurrence, but to enable doctors to make a diagnosis.

He hugged me before I left. I think it's because I was on the verge of tears. Of joy. So the appointment had as severe an effect on me as The Conversation but of course in the opposite direction. I felt happy and relieved and lucky and thankful and like I was walking on air. Not just at the shorter wait period, but at the thought of feeling informed and supported by my doctor. Amazing what that will do to a person's mood.

Still, there are things that bug me. I wish I had asked what the recurrence rate is. And I wish I had drilled a little more into - why the long waits? Maybe it is to make a diagnosis, but why six months? Why a year? Once you hit zero is there any question that an elevated HCG level would be cause for concern? I would expect that most patients with this condition watch that level like a hawk and are just as alert to their conditions as I am. And yet still, the protocol is 6-12 months. In any case, I think I will be ready to try in November. I think that is long enough. My doctor said it was long enough. The only other question is whether I'll be able to hold out even that long. I think the longer I have to get used to Dr. GO's opinion, the more waiting at all seems futile. Silly even. Hmmm.

Visit to the oncologist & more MTX

The gyn-oncologist was 45 minutes late to a 9am appointment. He had emergency surgery this morning. I guess I was lucky to see him at all, considering. The appointment was just a consult, meant to put my mind at ease and answer the questions my OBGYN hasn't been able to. But it was still a little scary. He said it could be anything along a spectrum of gestational trophoblastic diseases (GTD) from a molar pregnancy to choriocarcinoma (an aggressive metastatic cancer). All of these possibilities are a form of cancer, he said. So what I heard was: "you probably have cancer." But I had already come to terms with this possibility anyway. As much as you really can come to terms with having cancer. And I can appreciate the difference between this kind of cancer and the more aggressive, less treatable kinds. That makes this easier to come to terms with.



He discussed possible Plans B and C should the MTX not work. He seemed to think today's third dose of MTX was a questionable step but said go ahead anyway. He warned against keeping at the MTX since it is a poison and perhaps isn't having much effect. But he also acknowledged that it may be working since my betas have been lower since the treatments began. He was more concerned than I hoped he would be about the fact that my levels climbed from 9 back up to 15 recently. "They almost doubled!" he exclaimed. I guess that's true. But they've stayed there, they doubled once in two weeks and they're plateauing. And really, they dropped in two or three weeks, from 21 to 15. They're not doubling like choriocarcinoma or even like a viable pregnancy.



So the next steps depend on what happens over the next week. If the MTX works, he says to continue to take a couple more doses of that. If it doesn't, he thinks we should do a pelvic scan. If the scan shows tissue that can be taken out, he thinks another D&C is in order (PleaseGodNo). If not, he thinks we should try another drug. D-actinomyacin. He also mentioned a third, the name of which I forgot. He called the trio of chemo drugs "MAC." Probably the "C" in MAC is the one I'm forgetting.



He told a horror story about a girl who had gotten down to zero, decided she didn't want to over do it with the MTX and so she rejected that final dose the Dr. had recommended, and she ended up with HCG in the thousands a couple months later because the GTD had persisted. He told me this to convince me that it's a good idea to get a couple more treatments of whatever drug ends up working even after (& if) HCG hits zero. But he also had a good story about a girl who was about to be upped to a pretty aggressive chemo regimen becuase her HCG was rising and she had a lesion on her liver suggesting the GTD had spread and suddenly, the day before the drastic measures were to start, her levels started dropping. Inexplicably. And she's been fine since.



He had a seemingly reckless approach to TTC again. He said the MTX will be sufficiently out of my system in a month, no problem, probably days. And he seemed to promote trying again in around 3 months, contrary to the 6-12 I keep hearing about. I'm trying to prepare myself to wait 12. But I know that will be difficult. And if I have a doctor telling me three, well, all the better. He seemed similarly unconcerned about the possibility of this particular incidence of gestational trophoblastic disease (GTD) recurring during a subsequent, healthy pregnancy. I asked whether they'd be able to distinguish between HCG from the healthy pregnancy and HCG from a recurrence of the GTD. He said yes, sort of. If the levels stray outside normal limits during a later pregnancy, they can conclude that the GTD has acted up again. What he didn't mention is what in the H#@(( we'd do about it if it did recur while I had a little life inside me. I don't think there's much they can do. Which is why I'm preparing myself to wait a year.



He also said that if this is a molar pregnancy (probably a partial molar in my case since there were NO signs of a mole in the pathology report or elsewhere) I have a 1% chance of this being caused again by a subsequent pregnancy. Which is not large but it is significantly larger than the baseline risk of the general population which is .01-something. He said "it's not like down syndrome, it's more like having fraternal twins." By that he meant that DS is something you carry in your DNA, a mutation - twins is more of a predisposition of your body to mechanically behave a certain way (by releasing more than one egg in this analogy).

He mentioned two possibilities of what it could be other than GTD. One was a subsequent failed pregnancy which is resolving itself. I had been over this before with my OBGYN. It seems so unlikely. But of course preferable to GTD. Although on the other hand, if we're preparing for the worst and treating it like GTD, what good would it do me if it was a second pregnancy after all. I'd still be going through chemo and waiting to TTC again.

The second non-GTD possibility is "phantom HCG." Sometimes, he says, a few hormones can interfere and present in such a way that you get a "false positive" Beta test. So there's nothing producing HCG in your system but whatever the test looks for is there in some amount. We both thought this was unlikely too. I'm not cycling (could be stress, he pointed out), I tested negative on plenty of pee sticks before I got my BFP, and it would be too weird of a coincidence I think. Or maybe the pregnancy threw my hormones totally out of whack and this is phantom hcg...

Finally, for the sake of completeness, I will mention that he encouraged me to try a progesterone trigger, like Provera, to see if AF would come. This would help rule out Ashermans and could clean out my system such that the cells that are causing such a problem are shed. I think my OBGYN had been resistant to try this until my levels reached zero, but the oncologist is going to talk to her about it.

Overall I feel more informed, basically his was a third opinion. And was consistent with the others. And now I'm in knowing hands. And I was comforted to know there are more steps we can take if the MTX doesn't do the trick. But I don't feel any more optimistic about my current condition. I feel increasingly stuck and frustrated. How could the MTX not work? It works for a lot of things, it's supposed to be the go-to drug for someone in my position. It has to work.



I'm glad he recommended against getting a CT scan to look for signs of cancer in other areas of the body - he thought it unnecessary since my levels are so low. I'm also glad he acknowledged that I could have a molar issue - and that this is probably GTD. An almost-diagnosis! Albeit a scary one. My OBGYN kept trying to sweep this possibility under the rug since the pathology report was clean. But he didn't rule anything out either. He didn't say, much to my disappointment - "this can't be choriocarcinoma because your levels would be higher." But he's also not the guy who's been hearing my weekly updates and pulling the strings on my treatment. That guy was too busy to see me. The guy I saw had to familiarize himself w/ my case in about seven seconds and given that, I think he did a pretty good job of reassuring me that this can be resolved.

Another setback

I guess I anticipated the idea that I might need a methotrexate (MTX) shot. But after the 27 two weeks ago, I guess I let myself get too optimistic. My HCG was 28 yesterday. Suddenly it made sense that the HPT I took yesterday looked eerily the same as the one I took the week prior. The first hint I had that something was amiss this morning was when my Dr. left a message in which she did not disclose the beta result. She said she wanted to discuss the results. I immediately concluded that this meant one of two things. Either the results were not good and she wanted to discuss possible next steps to encourage the HCG to decline. Or the results were so good that she wanted to caution me against TTC again too soon, as that is her style. Then I thought, whenever I think I've covered all the bases, I inevitably miss one. I also thought, either result is good. At least we'll be getting somewhere. But now that the first possibility has been realized, I am alarmed, saddened, and angry. More upset than I thought I would be. I had planned a happy hour for tonight with two of my new-mom co-workers and right now I don't want to look at or talk to either of them. I definitely don't want to discuss this with them and have devised a secret plan in my head regarding how to get out of it.

I have to leave in 15 minutes to go to a doctor's appointment. The dr. is doing an u/s and as I've alluded, thinks a MTX shot is in order. I immediately jumped onto the internet to do some 'research' and have concluded that I hate the idea of a MTX shot. I just don't know if I hate it more than I hate the idea of waiting longer for the hormones to go down. I have to get another blood test to make sure I'm 'fit' to receive the MTX. And in the back of my mind lingers the possibility that in a couple hours it won't be the MTX I'll be worried about. Like she'll find something else during the exam or the u/s that explains everything. Could be good or bad if that happens.

The reason I hate the idea of MTX is that it's chemo and it strips folic acid out of your system. Thus delaying the TTC process. If I really did ovulate and am on the verge of a bleed, maybe I should just ride it out. Maybe I'll ask her about that if there's no sign of infection or anything like that.

UPDATE: I went to the Dr. She did the u/s and found an abnormal mass that she said was either a blood clot or the (largely reabsorbed) gestational sac from my second failed pregnancy. Sad and frustrating but perhaps good to have maybe identified the culprit? I don't want to hope that there's any basic explanation to all this. So far I've been so disappointed. And the idea of it being a second failed pregnancy scares me. A lot. And makes me think I'll never have a healthy one. And at the rate this process has gone (it has not been a 'simple' m/c) I don't know how many of these I can go through. Even if I'm ok with a dozen m/c's to get one healthy child, I don't know if there are that many 6-month periods left in my fertile life. I guess there are. But i really did not want to wait till my late thirties.

I made the mistake of asking a question about what else the problem could be - could anything else be causing the persistent hcg? Or could the tissue we think we found signal anything else that might be wrong. "You should never ask a doctor that question," she said. "There are a THOUSAND things it could be. I don't see any reason to go into it." Ok, thanks, I feel much better.

So methotrexate, she said, is the best option. She said that's what she would do. So that's what I did. I had a lot of questions and she wasn't really interested. I got some of them answered, but most of them I felt I couldn't push on without making her mad. For example, she said it's IMPOSSIBLE to ovulate if your HCG hasn't reached zero. This would make my whole EWCM + temperature shift that was the subject of my last post meaningless. And maybe it was. Maybe it was progesterone supporting my second doomed pregnancy. But maybe she's wrong and my cycle is kicking back into gear. It's a horrible position to be in to feel like your doctor doesn't condone your asking questions. But by the end of the conversation, I too had reached the conclusion that MTX would be the best option.

I had to go down to the oncology infusion department for the injection. Instead of baby and parenting magazines on the tables, there were catalogues for picking out which wig you want to wear when your hair falls out from the treatments they give you. I didn't have to look at pregnant women anymore. Or pregnant women with their young children and their husbands all in tow as is usually the case. Kids asking when the baby is coming, dads reading about how to raise a happy child. Nine months pregnant women with three other beautiful blond healthy children playing in the waiting room. How different their experiences must be from mine. How easy it is for some people. It was not only a relief to be out of the obgyn department, but being at infusion made me more grateful for the health I do have. At least I am not fighting for life. Seeing people who were made me feel a little selfish and self-absorbed for being so consumed by my TTC process.

They sat me down in a big lazy boy style chair and asked if i wanted a "warm blanket" or anything to drink or if I wanted to put my feet up. Like I was settling in for a long stay. I was under the impression (from my google research) that I was only getting a shot and that the whole experience would take only a few minutes. I mentioned this and the intake girl said it would probably be an IV and put my left hand between two heating pads to "warm up my veins." I started to wonder if they understood what I was there for. Or if they were about to accidentally give me the 1000x dose and create one of those 'hospital mistakes' like the ones you hear about that end up killing someone or removing the wrong leg.

When the nurse arrived she laughed at the warming pads on my hand and said I didn't need those. Too bad I hadn't just sat back and enjoyed the prior 10 minutes instead of fretting about hospital mistakes - the pads felt quite nice. The nurse closed the drapes around my chair, told me to take off my pants and then told me to grip the side of the chair. "Uh oh," I said jokingly, "is this going to hurt?" "Yes," she said, it hurts. She swabbed me with alcohol and said she was going to let it dry for a minute so it didn't sting as much when she went in. Then she stuck me, and it was like any other shot, not so bad. A little sting, a little burn. Compared to what I was prepared for, it was nothing. I was actually thankful that she had made it sound like it would be super painful. "Is that it?" I said, "that wasn't so bad." She told me that another patient she had had yelled and moaned about it so she tells people it will hurt. It really wasn't that bad but I feared that I would be taken down by side effects. Nausea, cramping, m/c symptoms, hair loss maybe.

None so far except for a couple shooting pains in my pelvic area. Not really cramp like, just sharp shooting pains. Shockingly painful for a nanosecond and then they go away. And I've only had a few. I almost wish I would have more cramping or that I'd bleed or something. Anything to show that its working. My BBT took a serious dive as of this morning. I had been temping in the 97.7 range since the 'shift,' and today it was 97.02. Almost pre-O levels I'd say. Time for AF. But I'm sure my body has other ideas.

I've managed to largely stay off the internet and to get some work done since the injection. The real test will be Sunday and Wedns when I'm scheduled to get new beta draws. I keep hearing that sometimes HCG goes up before it goes down after a MTX shot (ok, so I haven't stayed completely off the internet). That scares me. Even if it's 'normal,' I don't want to hear a higher number. It's SO low right now, it ought to just disappear.

Non internal side effects are also discouraging. I can't drink for a few days. Maybe a week since the MTX puts a serious strain on my liver. Also I can't eat anything (including prenatal vitamins) with folic acid since it compromises the efficacy of the MTX. Related to this, and perhaps the most discouraging is the fact that I can't TTC again for months. Because the MTX depleats folic acid and because you can't take prenatals until HCG goes to zero, and because you want to have at least three months of folic acid in your system before TTC to avoid birth defects and serious spinal neuro problems, there are at least 4 months after the shot during which you don't really want to conceive, even if you can. On top of this, DH's sabbatical will fall right over the time when we might be able to start trying again. So there goes another couple months. I'm actually ok with it though. It takes some of the day to day angst away. I don't have to live day to day and week to week thinking and hoping maybe just maybe things will be improved in the next few days. Maybe I o-ed yesterday, maybe today. I can take a break from that. There's no possibility of getting pg in the next several months (it turns into a 6 month wait if the first shot of MTX doesn't work and I have to get another one). It's sad though. I think about how much my mom wants to make a sweater for her own grandchild and how my dad wants to go to disneyland with them. On one hand its just a few months. On the other, it's a year after we were prepared for the new life. And I won't be pregnant by my original due date, which is depressing. And my friends will probably be pg with their second before I can even start trying, which is depressing. But I have to focus on the positives and the healthy reasons to want a child. It's not a competition, it's not for anyone else. And in the meantime, I have to learn how to enjoy not having those strings and stressors.

I'm less worried about DH's mindset than I used to be. I think he's seen how much I've gone through for this and for him to take the hope away would be the worst injury he could inflict. He did casually say he wanted one kid and not two recently. And said, only half joking 'two is two too many.' But I brought him around, back to the idea of two. And I think if I play my cards right everything will work out. I hate to think I would have to "play my cards" at all and that my DH wouldn't just automatically support me. But kids is a sensitive issue. A very personal one and one that changes your life completely and in unimaginable ways. So I have to be sympathetic, and I'm ok with that.