ICLW Kickoff

Welcome ICLWers and anyone new to the blog. Here's the backstory...

DH and I started trying to make a baby in the fall of '08, a strategic 3 months before our wedding. By the time we reached the altar we had gotten our BFP and then, 11 weeks later at our first u/s, found out I had suffered a missed miscarriage. Little did we know, the nightmare had only just begun. A full two months after my D&C I was still getting positive HPTs - my HCG was going down abnormally slowly. Since the pathology report from my D&C in January had come back 'indeterminate,' no one knew exactly what was going on...was it a second pregnancy? Left over tissue? The oncologist has since concluded that it was probably some variety of gestational trophoblastic disease (GTD). GTD is a disease of the placental cells. It's generally referred to as a "cancer" but the different types span the spectrum from totally benign to gravely malignant. It's best known for the havoc it can wreak as part of a molar pregnancy, but GTD can follow any type of pregnancy. I happen to think I fit the profile of a partial mole (which can be missed by a pathology report), but we'll never know for sure.

HCG happens to be a marker for cancer resulting from GTD and although my HCG was declining, more or less, the doctors didn't want to take chances and prescribed methotrexate (a type of mild chemotherapy) to get the levels down faster. When the methotrexate didn't do any good, we all just sat back and waited to see what would happen "off treatment." My HCG levels continued their slow decline, finally reaching zero (or "less than 2") exactly 5.5 months after my D&C. And as if a 5.5 month wait wasn't enough torture I was also told to wait an additional six months before trying again. On the chance that the pregnancy was a partial mole or did in fact cause GTD, my OBG advised this further wait period so they could monitor my HCG levels for a while. The common understanding of this wait time is that doctors want to monitor HCG continuously for six months to a year because if the levels go up, it could indicate a recurrence of GTD. If I were to TTC in the interim, the doctors wouldn't know if an increase in HCG was a new pregnancy or GTD returning. My oncologist questions this logic and thinks it's outdated (he said we could try again right away) but I waited five months before trying again to be on the safe side. Cancer is scary stuff.

Our first (natural) cycle trying again in the fall of 2009 was a bust. But the second resulted in a BFP, some promising beta numbers, ridiculous (20-week) morning sickness, and a heartbeat at 7w5d. We're now over halfway through our second pregnancy which has gone flawlessly with the exceptions of a Choroid Plexus Cyst found on our 19w anatomy scan and persistent breech presentation discovered at 34 weeks. The CPC is a cyst in the baby's brain which, while benign in itself, is a soft marker for the devastating Trisomy 18. CPC's occur in 1-2% of normal healthy fetuses but in 30-50% of T18 fetuses (thus its designation as a 'marker'). Scary stuff again. Since T18 is so devastating, there are usually more signs by this point, but not always. Since my baby has not exhibited any other abnormalities and scored an A++ on his first trimester screening (less than 1/100,000 chance of T18) my OBG is not recommending any follow up at all and has advised me not to worry. Of course I can't help but worry and the news has cast a shadow over what should be a joyous time. Before I got pregnant with this baby I thought there was NO WAY I'd ever have any complaints about pregnancy, should I ever be so lucky to get pregnant again. But I've found I do have a complaint (please don't read this as being ungrateful) which is that the anxiety is relentless. This has been such a fragile journey.

As if the CPC wasn't hard enough for me to deal with the discovery of breech kind of sent me over the edge since I had read that chromosomally abnormal babies are often breech. Still my OBG wasn't alarmed and when I insisted on speaking with a geneticist, she said that while the CPC raised my risk of T18 by a factor of 10 - so now we're at 1/10,000 if you're counting - the breech presentation does not count as a marker and doesn't change my risk. Still I worried, of course. I was overwhelmed with worry and tagged as a prime candidate for PPD.

But my baby boy arrived healthy at 38w4d via c-section on August 10, 2010 and I could not be happier. I don't think I have ever been happier. My life is not now free of anxiety, there is plenty of it, I'm a worrier by nature. But I have all that I have ever wanted in life and I refuse to lose focus of that after all I've been through. I bid you welcome to my journey. It's been a rough one but I am lucky. I brought my baby home, I have him in my arms, and I love him more than life itself.

ICLW Kickoff

Welcome ICLWers and anyone new to the blog. Here's the backstory...

DH and I started trying to make a baby in the fall of '08, a strategic 3 months before our wedding. By the time we reached the altar we had gotten our BFP and then, 11 weeks later at our first u/s, found out I had suffered a missed miscarriage. It was devastating and totally unforeseen (I had experienced plenty of morning sickness and no bleeding or cramping whatsoever - I thought I was a healthy pregnancy poster child) but little did we know, the nightmare had only just begun. A full two months after my D&C I was still getting positive HPTs - my HCG was going down abnormally slowly. Since the pathology report from my D&C in January had come back normal, no one knew exactly what was going on...was it a second pregnancy? Left over tissue? The oncologist has since concluded that it was probably some variety of gestational trophoblastic disease (GTD). GTD is a disease of the placental cells. It's generally referred to as a "cancer" but the different types span the spectrum from totally benign to gravely malignant. It's best known for the havoc it can wreak as part of a molar pregnancy, but GTD can follow any type of pregnancy. I happen to think I fit the profile of a partial mole (which can be missed by a pathology report), but we'll never know for sure.

Although my HCG was declining, more or less, on its own, the doctors didn't want to take chances and prescribed methotrexate (a type of chemotherapy) to get the levels down faster. And when that didn't seem to do any good, we all just sat back and waited to see what would happen "off treatment." What happened is that my HCG levels continued their slow decline, finally reaching zero (or more accurately, "less than 2") exactly 5.5 months after my D&C. And as if 5.5 months wasn't enough torture I was also told to wait an additional 7.5 months before trying again. On the chance that the pregnancy was a partial mole or did in fact cause GTD, my OBG advised this further wait period so they could monitor my HCG levels for a while. The common understanding of this wait time is that doctors want to monitor HCG continuously for six months to a year because if the levels go up, it could indicate a recurrence of GTD. If I were to TTC in the interim, the doctors wouldn't know if an increase in HCG was a new pregnancy or GTD returning.

However, In August my oncologist informed me that a wait time has no real medical basis. Six and 12 month wait times commonly prescribed after a molar pregnancy are arbitrary and outdated, he said. There is no evidence, he said, that the GTD has any higher chance of recurrence in the first six months than it does at any other time in my life. He said we could start TTC again right away, but that I do have a higher chance of having a molar pregnancy in the future, regardless of when we start trying again. He considers my case "resolved" and is not worried about a recurrence (other than the fact that now my baseline risk for another molar pregnancy is a bit higher than the average population). I decided to wait until late October, just to be on the cautious side - to make sure my HCG is really staying at zero and that the methotrexate is out of my system.

The Wait went well - my betas stayed negative. Our first cycle trying again was a bust. But the second resulted in a BFP and some promising beta numbers. And that's where we are today.

The last year has been the worst of my life, no question. Losing a baby, a cancer scare, and being raked over the coals by a consummately unprofessional OBG. But there is a silver lining. What I've been through has taught me to appreciate my health, to be more sensitive to others, that reaching out to the IF community is better medicine than anything doctors can prescribe, and to love AF (who I will never again take for granted). Someday soon I do hope to start a family. In the meantime, I bid you welcome to my musings on babymaking, life after loss, recovery, and the neverending struggle to be at peace with what has happened.

"HCG Results Day" or "Could that snail move any slower?"

Results: still less than two. Awesome.



Instructions: test again in one week. HELL NO. This has gone on long enough. So I protested this time. I told automaton nurse lady that I had a question for Dr. OBG: Why are we still testing weekly if, almost TEN weeks ago now, Dr. OBG said we would test weekly for four more weeks and then go monthly? The answer was that Dr. OBG changed the plan. Simple as that. No explanation, no call back from Dr. OBG. Not even an acknowledgement that the plan had changed. I. am. done. with. her.

Friends, this weekly testing thing isn't just annoying anymore, it's actually getting difficult for the lab to draw my blood. My veins can't take this weekly shit anymore. Even perfect shot guy had to jab me twice yesterday. He actually said "I can feel the needle snagging on the scar tissue." This was his grotesque explanation of why no blood was coming out of what was formerly my best vein.

Enough, I say. This is getting ridiculous. So I've decided to make an appointment with Dr. GO. To discuss dates and facts and come up with a plan I can live with. None of this "changing our minds" crap. I am worried that he'll be predisposed to agree with and defend Dr. OBG and I know that that is a very good reason to get a second opinion outside the group, but I also feel like we are so knee deep in this quagmire that jumping ship right now would be more trouble than its worth. Plus, I trust Dr. GO (as opposed to Dr. OBG who I emphatically do NOT trust). So if I can get him to understand my concerns, I think he will be straight with me. He's reasonable. I like him. I think I will feel better after I talk with him, whatever the outcome. Here are the questions I plan to ask (after I lead with the story about Dr. OBG arbitrarily changing her mind about how long to do weekly testing - just to develop the historical background for him, lest he's forgotten)



1. What is the science behind these numbers? Why 7.5 months from when my HCG levels hit zero? Why not 12 months from zero? Why not six months from the last MTX shot (my first choice, btw). I think I can leverage this question into a shorter wait.



2. What, exactly, are we worried about here. I mean I get that we're concerned about an uptick in HCG. But the most they ever went up by themselves is SIX lousy points. Are we worried that they'll go back up by six points on their own? Is that why I can't start trying again until over a year past my miscarriage?!? Does that seem extreme to you Dr. GO?

Dr. GO will inevitably defer to Dr. OBG. I'm expecting that and I'm prepared for it. I will say something like "well, she's told me that she's deferring to you. She's told me on several occasions that she doesn't have experience with this, she's never seen it before, and she's moved the target around without explanation. I made this appointment because I really want to hear your opinion as to what I should do. And why."

I am going in there armed with all my dates and values and conversations I've documented. I am bound and determined to make this a productive meeting because I think it is taking the place of my second opinion appointment. I just don't have the hours between now and the end of the billable year to be spending my days waiting in waiting rooms for oncologists to come out of surgery. I want the visit to be an investment. And if I can get one of my doctors to be on my side - meaning: to talk to me, to understand and address my concerns - it will have been worth it. And I want to clarify, by wanting a doctor "on my side" I don't mean that I'll only be satisfied if I get The Wait shortened. I really just want some honest answers. If it turns out that Dr. GO has a litany of anecdotal or statistical evidence that I really should wait another year, so be it. My goal is not to get a certain plan out of him (though I will of course be thrilled if its a shorter plan), my goal is to stop feeling so angry and mistrustful and alone in this process. My goal is to invest the time in making sure my doctor knows me and my case well enough to make an informed decision on my treatment. I'm almost a year from when we started TTC and I still don't have that. So this is me, trying harder. And when this is all over and I don't need an oncologist's supervision anymore, I plan to switch to a different OBG. Maybe even a different group, like Ka!ser.

Anyone had any experience with IF or OBG at Ka!ser?

Finally, I wanted to note that when I called Dr. GO's office to make the appointment the receptionist said "Oh hi, Astrid. Is this your three month follow-up?" Huh? "No," I said, "Dr. GO didn't ask me to come in. I just want to talk about my treatment plan. But I guess that's a fair way to classify it." She said that sounded good.

It made me feel better to know that follow-ups are the norm here. I just wonder why no one mentioned it before. Whatever.

UPDATE:

The day just keeps getting better by the moment. I have this FB acquaintance who has gotten into the habit of using the status updates to write how her pregnancy is going. Every time. EVERY UPDATE is pregnancy-related. It's like, her "thing." Sometimes it's a complaint which I find particularly offensive, sometimes it's cutsey, sometimes its u/s pics. There are weekly updates and milestones, etc. With no regard whatsoever to how this might come accross to someone who is having trouble. It's like the thought of 'having trouble' has never entered her mind. Like she thinks she's somehow earned the attention by getting pregnant (again). And if I were a betting person, I'd bet a LOT judging by the size of her friend pool and the age of her friends that I am NOT the only one having trouble.

Today, the most obnoxious of all. "18 weeks, time for in-vitro education! Bet you're all glad I'm working from home today!" Through comments to this post I come to find out that she's trying to teach her babies (oh she's having twins, did I mention that?) pattern recognition. By playing patterns of sounds. Really?

I otherwise quite like(d) this person but I'm starting to want to ask her: have you ever heard of infertility? Could you not be a little more sensitive and a little less ignorant? Could you please refrain from turning the home pages of all of your FB friends into a shrine to your pregnancy? It's not her first one, she's pregnant with twins after having two prior healthy pregnancies. One of her updates lamented that her youngest was turning two and finished "thank goodness there are two more on the way!" Blech. Not happy for her. Not one iota. She is not the person I thought she was and that's disappointing. This IF/loss journey certainly is one of those experiences that teaches you who your friends are and casts peoples' intelligence (or lack thereof) in a whole different light.

ICLW Summary

This is my first ICLW and I've already decided that it's one of the greatest ideas in the blogosphere. It's so wonderful to hear from you all - thanks so much for visiting. I think a summary may be in order, just to see if I can catch people up in a few short paragraphs.

My LMP was Oct. 16, 2008. In November I found out I was pregnant. In early January at my first u/s appointment I found out I had suffered a missed miscarriage very early (~5.5w). I had a D&C and that should have been the end of it. DH and I started BBDing a few weeks after the procedure in an attempt to try again. I was temping the whole time and was convinced I wasn't cycling at all. I was also taking HPTs semi-weekly and when, 9 weeks after the D&C, the HPTs were still turning up positive, I called my OBGYN. We quickly deduced from serial HCG tests that my levels were in the 40's and that I was not viably pregnant so we started waiting for the HCG to drop. And it did. Very very slowly. And sometimes it went up, but never more than 10 points. And so my OBGYN sent me to an oncologist who thought I might have gestational trophoblastic disease. I started methotrexate injections. Which seemed like they were working, but the numbers were still dropping so slowly that it was hard to tell. Now, almost five months after the D&C, my HCG is still positive (it was 5 after the last draw) and I have four injections of methotrexate under my belt - which means waiting at least 6 months to try again, even if my HCG ever does reach zero, to make sure the poison is out of my system. The doctors are not sure if this is all a result of a partial mole, a second failed pregnancy, or just a very slow metabolism of HCG. I just finished a course of Provera and am anxiously awaiting the arrival of AF - not sure if she will show though with HCG still in my system. I am "off treatment" (meaning no MTX) for now but if my HCG goes up, we will start a more powerful course of chemotherapy.

In the way of a micro-level update for those who have been following the blog, this is day 5 after finishing the last Provera pill and I guess I'm experiencing what I might describe as spotting, but it's very light and almost not even noticeable. NO other symptoms of AF. If she doesn't arrive, it will be difficult to know why. HCG? Ashermans? Stress maybe?

We had another lay off at work today. More drama this time. It certainly has helped to put things in perspective. One more reminder of how lucky I am.

Relatedly, I've been really good at seeing the silver lining lately, I think I'm still on a high from the last HCG result. So much so that I'm afraid to go get my next draw Monday. I don't want this feeling of hope to be extinguished. I don't want to view the world through my glass-is-half-empty lense anymore. I want to be inspired by challenges rather than defeated by disappointments (because aren't they really the same thing, approached with different attitudes?). I want to look forward to the next day and attack it. I don't want to dread or fear or hate or pity myself. And I think this is what my experiences over the last 6 months have taught me. That each day is a new chance, things can change in an instant, I've been taught perspective and the value of hope. Acceptance of uncertainty and of my own lack of control. And today I can look at this all as a gift. Because my HCG is FIVE! But tomorrow, it might be 25 and I will see it all as my personal hell. And maybe I will realize that I haven't learned much at all and that my optimism was illusory.