A Change of Meds

The warmest of hellos! Some of you may have heard about my experiences last night, but for those who haven’t, and those who haven’t heard enough, I give you this explanation.

As I mentioned in my post Bleeding and other things, my platelets have been low as a result of my medication. This condition is supposed to clear up in a month or two, however at the time of my last doctor’s visit, they were still low. The normal is between 130 and 200 thousand parts per million, and mine were hovering around 55 thousand. This was lower than my doctor would like, but the number was not unheard of at that point in treatment, so he decided to wait and see if they went up. Flash forward two weeks, and I’m bruising a lot. I had little marker dots all over my legs, indicating broken blood vessels, my lips were constantly breaking, and I had various other black and blues all over my body. So, in my infinite wisdom, I figured everything was cool. Then I kept bleeding, and I figured I’d better call the doctor.

Hackensack Hospital has a special number to call for questions, which are answered promptly by a nurse.  I called this number, told the nurse that I was bruising, and he told me, in his infinite wisdom, to be careful. So I went around being careful, but I was still bruising and bleeding from the nose and lips (which, if you’ve never seen, is highly attractive). I called again, and this time I got an appointment for a week later to check my blood, specifically for platelet levels. Flash forward to last night.

I go in at 1:30 pm, and they hit me with a finger stick, which is this little needle they zap into your finger and then message out a tiny vial of blood. I said hi to all the nurses, we’re friendly now, and went to go wait in the waiting room. Surprisingly, I wasn’t there long before the head nurse called me. I knew something was up because she asked me how I was feeling. As a rule, you should always be on your guard if someone in the health care profession asks you how you’re feeling.

They didn’t hit me with the platelets right away, instead pumping me with saline solution, which is almost identical to the body’s natural fluids, and is used to keep the vein clear. While this was happening, the head nurse came back in. She explained that Goldberg really did not like the numbers. If my platelets and neutrophils were as low as they were at this stage in the treatment, then something was wrong, and the Gleevec had “failed me.” Basically, the side effects were unacceptable, and I was going to be switched to a different medication. However, they had to do another bone marrow test to figure out what the problem with the low counts was; either it was a side effect of the Gleevec that my body could not normalize, there was some other problem separate from the drug and the cancer, or I had reached accelerated or blast phase of the disease. My blood did not indicate the advanced phase, but they needed to check the marrow to make sure, because in that unlikely event, I’d pretty much have to go in for an immediate bone marrow transplant (which would suck, by the way).

For those with good memories, the bone marrow biopsy involves jamming a giant needle into my ass bone, so needless to say I was less than thrilled at having this procedure done to me again when I wasn’t even expecting the IV. I don’t know what it is about my ass that makes doctors want to stick needles into it; perhaps there’s a bulls-eye I am unaware of. Again I lay in the fetal position (for better access to the bone, I suppose), mooning everyone and holding the nurses hand as a dude got inside my bones. Again the nurse wiped my ass, and again I got a glass of apple juice.  At that point it was almost six o’ clock.

The nurse gave me benadryl and tylenol so the platelet’s antibodies wouldn’t kick my ass, and started feeding me platelets (not literally; through the IV). An hour later I was done and went home, but not before  I started a miscommunication with my mom in which she thought I was actually admitted to the hospital, and not just having to stay there for an extended period. This resulted her getting me food, changes of clothing, and calling everyone she knew to tell them where I was (except I wasn’t). For anyone still operating under that misconception, please be aware of reality.

I get half of the test results this Tuesday, and the other half in a week or so, and at that point I will change medications, which hopefully my body will tolerate better (In the mean time I’m still on Gleevec). I did call my sister to let her know that the hospital will call her and send her a DNA kit (essentially just a toothbrush) to find out if she’s a good genetic match for a transplant. This is the unlikely worst case scenario, but like doctors and boyscouts always say, you have to be prepared.  I really don’t think I’ll need the transplant, though; I mean, I feel good, and its only been a little over a month since my last test, which showed clean marrow. I also just have a good feeling.

Now I am resting at home, and feeling good. I’ve listened to a lot of p-funk to keep things on the groove – The Motor Booty Affair, Mothership Connection, and Back in the Day: The Best of Bootsy – in addition to the Spinal Tap soundtrack. All is well. I will keep everyone posted as things develop. Until then, may butts and needles never meet – amen.

Christopher DeLuca @chrisd