Yesterday was a day full of doctors & dentist appointments. Sam had three baby teeth pulled. (They were preventing his permanent teeth from coming in.) He also had a check-up w/his pediatrician. In the midst of it all, we stopped by the hematologist's office so I could get some blood work done.
We were checking to see how things looked after a month of no medication/treatment. As 1500 is considered the low end of the normal range, I'd been a bit bummed that my last neutrophil count was 1100 at the end of May. I was hoping to be above 1500 this time, maybe even above 2000.
In this doctor's office, they have this cool machine which processes my blood & gives us data minutes later. When the phlebotomist looked at the numbers, she first mentioned a 2.8. For a second, I thought she meant my neutrophils were 2.8 (which would be 2800). I said something about that making us happy.
Then, she clarified that 2.8 was my total white blood cell count. (That number is supposed to be above 4.5.) My neutrophils were at 230. Since anything below 500 is considered life-threatening, that makes us less happy, I said.
I haven't had numbers that low since early September. Since that time, my numbers had been over 1000 for the past eight months.
The doctor passed through the room (I have an appointment w/him next week on the 30th) & said that it really wasn't too surprising and that I shouldn't worry. While I cried about 1100 last month, I didn't have it in me to worry about 200. Maybe when it is this bad, I feel there is no point wishing it were a little bit better.
The doctor asked me to give myself a shot (in the stomach) of a medicine called Neupogen which is supposed to help me create neutrophils. I have had good results w/this medication in the past (sometimes remarkably good) but haven't been able to maintain good numbers w/or w/o this medicine alone. (I hadn't taken it in over a year.)
The doctors seem to think I'm doing an alright job of making Neutrophils but that something has been "knocking them down" or attacking them. (Generally, they blame my lymphocytes, the white blood cells that are supposed to protect me against viruses.) The treatment I had almost a year ago, a treatment they give to people who have had organ transplants, was in hopes we could get this pattern of my body attacking my body to stop.
It didn't look like it had worked to me at first but then it looked like it just took a few months to work. I didn't want to take one of the medications (Cyclosporine) as I'd been told by other hematologists that it was toxic. In the hospital, they said, "It is toxic & you need it." I agreed to take it as part of the treatment (which was supposed to be a five day treatment).
I didn't know they were going to expect me to leave the hospital taking it & kept wondering when I could stop taking it. Eventually, per the request of a hematologist at UCSF, I agreed to taking it for a year. Now that I've been off it for a month & my numbers have plummeted, my hematologist is talking about possibly asking me to start taking it again. I don't know how well it will work on its own as my understanding was that it was part of a broader treatment but I guess we'll see.
So, I'm fine, really, I think, but I am back to having to decide if I will be a guinea pig for them again. Not expecting you to understand (as the doctors don't really seem to understand). Just sharing what I think I understand them to be saying. This isn't new but apparently it isn't over either. Oh well, I'll just climb this dune & see what we see when I get to the top of it.
As always, thanks for caring.
Love,
Mary
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