Jul 14, 2012 - 10:39 pm
I guess I've been in denial about my medical status for a month or so. After 8 sessions of Rituxan, my platelets were up to 160 and I was feeling well. My hematologist had me go in for a followup CT scan "just to see", and I did that last week.
The results are pretty scary. The hematologist knows that I want the actual test results, and don't just want to hear that it's normal or abnormal, so she emailed them to me. I'll see her Monday to discuss it.
In the meantime, the CT scan shows that there is all kinds of stuff going on in my lungs - several pleural effusions and pleural-based nodules. I didn't know what that even meant until I looked it up online - another educational moment that I never wanted! I also have an enlarged spleen (already knew about that), an enlarged and abnormal thyroid (that's new), and more enlarged lymph nodes than I had a few months ago. Ugh. Quoting Dorothy Parker, what fresh hell is this?? Is the lymphoma settling into my lungs and thyroid? If not, what else could be causing this? Of course I'll ask about all of this on Monday, but in the meantime my poor tired little brain is working overtime imagining what the worst case scenario might be.
On top of the ugly CT scan, my platelets as of last week are now back to 118. The hematologist said in her email that I shouldn't be overly concerned about this, and that it could just be a normal lab result variation. I'm not buying it...160 to 118 seems like a pretty substantial drop. I have lab work done weekly, so we'll see what next week shows, but I've heard this all before...seems like some new awful thing happens every time the doctor tells me not to worry.
So, I'm making my list of questions for the Monday meeting. Again. I feel like I've gone through this so many times now: Test results, diagnosis, research, questions, more questions, dubious answers, more tests. And every time I feel a little less resilient, a little more like I'm going down a rabbit hole.
Glad this space is here so that I can tell the truth about how I feel about all of this, instead of having to put a brave face on it when I feel anything but. It really does help.