I ended up being ordered by Dr. GO to get my beta HCG drawn last night. Lame. Really, what is the point? The day 4 result is historically meaningless. So I went and the 'bad boy' of the lab techs (same one who gave me an unauthorized standing order to get HCG draws - I know, scandalous) tried to set me up to get my results faxed to me. However, that process seems to have been derailed. Apparently lab results are super top extra secret and it is a pain in the ass to get ahold of them. So I called Dr. GO to get my lab results this morning. The receptionist said that while she had access to the results, she couldn't disclose them until the doctor has had a chance to review them and she wasn't sure whether he had.
However, she also said she had tried to contact me earlier today to answer my question about how often to get tested from here on out. Now, my question wasn't really how often to get tested, I know that depends on what the results are and whether treatment continues. My question was whether to get tested yesterday and I had tried to explain that I shouldn't need to get tested until Thursday. But in true form, the receptionist had totally misinterpreted what I was saying and made up her own question. Anyway, she said she had asked Dr. GO about my non-question and he had said that I should get tested once a week.
Giveaway?
Does this mean Dr. GO did review my results this morning and determined they're not low enough that another MTX injection is in order? Weekly draws were going to be the outcome if the MTX had not gone to zero. So does this mean a non zero result? If the labs were near zero the answer would have been, "it's working! test friday and get a MTX injection," right?
Or was he confused by the question, knowing that I know that the real answer is "it depends," and just gave a safe answer that doesn't really mean anything.
Or the third option: I am, characteristically, overthinking the issue.
Before this phone call with the receptionist I wasn't sure whether I preferred 1) a close to zero number + more MTX or 2) a higher HCG number and no more MTX right now. After the phone call, I realize I would prefer option 1, the low HCG + MTX. But I guess not by a lot. A non-zero means I can stop taking MTX, drink with abandon, test once a week, see what happens with the provera, maybe start the clock on the 6 to 12 month wait before TTC again, and possibly conclude that what I have might not be cancerous. But it could also mean more lethal chemo along the way if it does turn out to be cancerous. It's really a lose-lose. I just can't get my head around how long this is taking to resolve itself. It's become a mind-blowingly huge chunk of my life.
Dr. GO will get back to me, the receptionist said...
UPDATE: Dr. GO didn't get back to me, but Dr. OBG's assistant did. Beta is 8. Again. Will this never end? No seriously, will it never? This is so disturbing. Its 4.5 months past my D&C with FOUR MTX shots, which, admittedly, may have had no effect (but then, how to explain the precipitous drop just following the first injection...). How is this possible? And what does it mean when the gynecologic oncology receptionist says "this certainly is an interesting case." It's oncology, is this really an 'interesting' case, relatively speaking? Am I a freak of nature in some kind of alternate universe? Should I just accept that my HCG will never get to zero during my reproductive years and I have no hope of having a baby? Is this a sign that my hormonal system is so jacked up that even if I get pregnant again, my body won't function properly and it too will fail? Or is it part of the choromosomal fluke and not likely to happen again?
Actually, having talked myself up about possibly not having to do another MTX in the first part of the post, I'm kind of ok that it's still at 8. But not totally, but I could use a break. And really, I have no basis upon which to declare myself free of MTX this week since I still can't get either of my doctors to call me back. Eff.
In other news, I'm taking a trip to the dog shelter this afternoon to take my mind off 'things' and possibly add to our family. But this adds it's own kind of stress. DH wants a big dog. I want a small one. DH always does what I want so I want to to it his way this time and get him a big dog. But it's SO impractical for us. And there aren't any big dogs at the shelter that fit our criteria. So we may end up doing things my way once again. And I will have to somehow deal with the guilt that will inevitably ensue.
Work is busy, that helps get my mind of this too. So I will carry on. Still hopeful. Still thankful the numbers didn't go up.
14 years ago
3 comments:
Thank you for knowing I only meant to share info. I really hate leaving assvice and don't do it very often because I always feel like its telling the person they don't know how to think for themselves.
This is all so nutty. I hope you get an end or an answer to it soon.
I'm here from LFCA -- I had a similar situation in '02; miscarried at 8w, sent home to just do it naturally. Beta didn't go down. Just hovered in the double digits for months, at one time it actually ticked up. FINALLY they sent me in for, um, forget what it's called -- where they fill your uterus with saline solution and then do an u/s? And they discovered "left over product." (At this point my beta was around 15) Did a D&C, now THREE MONTHS after my m/c.
I know there are risks to D&C, but there are also rather ugly things that can happen when you leave tissue in there that shouldn't be. I guess if it were me, I'd insist on some kind of imaging (u/s; you mentioned MRI) NOW. because in the end it's just time out of your ttc timeline that you're not getting back. And believe me, I wish today, 7 years later, that I had 3 months more.
Good luck -- this is really a crappy thing to have happen.
Hi - I'm from LFCA, too. I also had a partial molar pregnancy and my levels plateaued and then stubbornly wouldn't go all the way down. After 4 months I was sent to an oncologist for hard core chemo (a step above MTX) but she asked that I have a CT scan before coming in. Nobody reviewed the results with me, but the CT scan revealed a mass of trophoblastic tissue that had been growing ever since the D&C. Four days before I was supposed to start chemo, I passed the tissue (much to my surprise since I didn't know it was there) and on the morning of chemo I insisted - and had to fight for it - that I get one more beta. I had the IV in my arm but no drip connected when the lab called and said my levels were finally, finally zero. If you haven't had any scans recently, definitely discuss the option with your doctor. Good luck.
Feel free to email me if you have questions.
additionproblems [at] gmail [dot] com
Post a Comment