Well I know you're all just dying to get a medical update, so even though it isn't filled with many answers (though still a novel), I figured I'd let people know what I know.
I think the last update I wrote about was just after my first treatment. So I'll start about there.
I went in the next week to get my blood drawn, as per usual. I found out I have a $20 copay even for lab work (which I need to call my insurance to double check, since it is usually FREE). That is killing me. $20 every week just for them to suck my blood. I'm a poor college student, just sayin...
The next week I went in for treatment #2. I was supposed to get my blood work done, meet with the doctor, and then have my treatment. I got taken back and the nurse asked me a few questions and then I waited for the doctor. The PA came in and basically talked to me about how my HCG was at 148 the day I got my first treatment and it was at 147 one week later. She said that obviously it didn't really change much, so we might need to change my medication or add to it. She said that was basically all she had to say and that she would go see if doctor Gosewehr had anything else he wanted to say. I was a little annoyed because I wanted to speak to HIM, but whatever.
She came back and took me to the treatment room. I got settled and they started hooking me up. I notice Doctor Gosewehr at the door of the treatment room and we made eye contact. Somehow I knew he was coming to talk to me. He told them to turn off my IV (at this point it was basically saline and nausea meds before my actual treatment). I was a little startled by that. Then he starts explaining to me how, although very rare, sometimes the body creates an antibody to HCG. He said when we run the blood test, basically it looks for this certain thing in the blood with a certain pattern in it. Even more rare with today's technology, sometimes the test can be picking up the antibody because it has a very similar pattern. He used the analogy of a shadow, it looks and acts like the real thing, but isn't the real thing. He said he would like to do a urine pregnancy test because the antibody isn't in the urine so that can be a good indicator if it is the antibody or not.
Well I was shown to the bathroom and gave them a sample and went back to my tan chair. At this point my treatment nurse came up to me and we talked about whether we should start the treatment now or what. So she went to go find Doctor Gosewehr. Just as she left, in he walks. I told him she went to look for him and he said "I know, I'm hiding from her" and he proceeds to hide behind my chair as she is walking over to us. She said to him, "your black shirt doesn't blend in very well with the green chair!" I furrowed my brow... "Green? I thought the chairs were tan this whole time!" They both laughed at my colorblindness.
Well he told me the urine test was negative. He said it could be negative for 3 reasons. 1: my urine was too diluted with water and the saline. They didn't seem to think that was it. 2. My numbers had dropped considerably and so they wouldn't be detected by the urine test (that would be awesome). 3. It was the antibody. We decided to go ahead with the treatment and I was supposed to call back that night to see what the results were. I was also supposed to go in the next day for my chest x-ray and CT scan, but he said we'll hold off on those because he didn't want me to do an unnecessary, annoying test if we're basically just chasing a ghost.
Well apparently I had dropped to 65! That was great news! (though I was confused as to why my urine test was negative, since he made it seem like the antibody would stay pretty level).
A week of bliss.
The next week I went in for my blood draw. The next day I missed a call from Doctor Gosewehr where he informed me my levels had jumped to 116--almost double. He said they were going to run some more tests and if I hadn't heard from them by Tuesday that I should call in. Tuesday came and I hadn't received a call, so I called. I spoke with his nurse, and really I didn't receive any new information, he just said I would need to keep getting treatment until my levels were <5 for two checks. He asked if I had had any other symptoms. I told him I had had some very light spotting, but that it didn't seem like it was my period. He seemed a little taken aback, and said he would talk to the doctor.
I was starting to feel pretty anxious. I never like to hear my numbers jump. I don't know what it means and it makes me fear for the future and makes me worry about how much longer all this will last.
Well, today I went in for treatment #3. I noticed on my schedule that they had miss-scheduled me. I am supposed to have lab work, doctor visit, treatment. Somehow they accidentally missed the doctor visit schedule and scheduled me for two treatments. I wasn't happy because I wanted to hear what he was thinking! They took me back to the treatment room and I told them I had questions. They said, we'll wait on your treatment and we'll get you in to see him.
Oh, I forgot to mention that my grandma had an appointment at the same office at the same time. So her and my mom were there. We left my Grandma in the treatment room and Mom and I went back to wait for the doctor. We waited and waited. I kept thinking we should have just got my treatment started and he could've just come found me when he was ready.
Finally he came in and started talking about the stuff I already knew. He said they did some more tests to check about the antibody and they all came back saying it didn't seem to be the antibody, but that there was still some pregnancy tissue somewhere. He always reminds me that we're not worried about a big threat right now. Today he used the analogy that it isn't like I have some hooded man holding a knife to my neck. It's more like there is a 2 year old across the room with a pin. Now, we still don't want to get pricked with the pin, and it could have some disease on the needle, but really its not a big threat, we just want to take care of it, especially since Derek and I want to get pregnant soon (well more like...already be pregnant, but oh well..) He asked about our birth control usage and said he didn't want us making his job harder than it already is... We've been doing our best, but I guess there is always a chance you can get pregnant. As much as I want to get pregnant, it would break my heart because all the junk they're putting in me would be so harmful to that little guy. I'm pretty sure that isn't it. Plus with the spotting, it wouldn't be good news anyway. He talked about how we wanted to take my case to a local (and then decided a national one as well) board? I can't remember what he called it, but basically wanted to put it out there and see if other doctors have had similar situations and what they've done and such. Good thinking, I thought. The more help, the better.
Anyway, he said we're definitely going to go forward with my scans now. He said he wanted to do an ultrasound as well so we can get a really good picture of my uterus and I'll have my chest x-ray and CT scan. Basically he said we're checking from head to toe to make sure we aren't missing anything. He doubled checked with me that I haven't had a real period since all of this, and asked about how regular they were before..and we talked about how I've been spotting for the past few days, but it really doesn't seem to be a period (sorry if this is TMI, but I'm past that point..) He didn't seem like that was a great sign... I don't know. With the spotting it makes me more sure it isn't the slight possibility that I somehow got pregnant. Not that the alternative is all that great either... We'll just wait and see what my levels were today and hopefully I'll be having all my scans next week and we'll have a much better idea of what we're up against. That brings me a little bit of comfort for the time being.
Oh! And he said I didn't have to have my treatment today! (This made the waiting worth it!) He said it starts tearing on your body and we might as well wait to see how everything looks. He talked about how we tried something minor (methotrexate) and then we've been trying something a little more potent (my current dactinomycin), and that the next step would be here (he raised his hand a much higher distance) and mentioned that we don't want to go to that step if we don't have to, but so far it doesn't seem like the others are doing the job.
Hopefully we don't have to go to that big step and my body starts figuring it out. Thanks for the continued prayers and support! We got a DELICIOUS fruit basket from Derek's siblings this week..HUGE thank you! And on the bright side, I won't be feeling all nauseous for the next few days! WAHOO!
Kendra I'm so sorry you are going through this! I hope your doctor can find someone with a case similar so you can get answers!
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