Eventful week, and not really in a good way.
So Friday I went in for the weekly Dara appointment, but there were problems with my CBC (“complete blood count”) results. Namely that my red blood cell count was in the danger zone.
Sorry, Archer joke. Here’s what the danger zone looks like, apparently, with my number and then the “OK” range in parenthesis and a description of what each one is (that I shamelessly copied/pasted from webmd.com):
- Hematocrit 18.8% (40-54%). This test measures the amount of space (volume) red blood cells take up in the blood. The value is given as a percentage of red blood cells in a volume of blood.
- Red Blood Cell 2.14 10 12/l (4.4-6.0 10 12/l). RBC’s carry oxygen from the lungs to the rest of the body, and carry carbon dioxide back to the lungs. If the count is low (anemia), the body may not be getting the oxygen it needs.
- Hemoglobin 6 g/dl (14.2-18 g/dl). the hemoglobin molecule fills up the red blood cells. It carries oxygen and gives the blood cell its red color. The hemoglobin test measures the amount of hemoglobin in blood and is a good measure of the blood’s ability to carry oxygen throughout the body.
- Platelet Count 78 10 9/l (150-400 10 9l). Platelets are the smallest type of blood cell. They are important in blood clotting. When bleeding occurs, the platelets swell, clump together, and form a sticky plug that helps stop the bleeding. If there are too few platelets, uncontrolled bleeding may be a problem.
Anyhow, the doctors decided to keep the Dara appointment but prescribed two bags of blood. Thankfully I ran my errands the day before, since that added four hours to my day. Easter weekend itself wasn’t horrible although I was exhausted all weekend even with good sleep. Saturday my daughter Ariana had belt testing at her TKD gym and did great, then Amy’s parents came up to celebrate Easter since my mother-in-law had to fly out Easter Sunday. They set up an egg hunt outside which she loved. Sunday we met my parents in Cherry Creek briefly after lunch at one of our favorite seafood restaurants, Blue Island Oyster Bar.
So Monday comes around and it’s IViG time. The CBC from Monday looked about the same as Friday’s, just minor improvements. Due to my numbers last week my doctors asked for a bone marrow biopsy, my fourth now, to give the doctors a better picture of what’s going on with my disease. Not wanting to inconvenience anyone I opted for no anesthesia and just did it with a local — really didn’t hurt much at all and was vastly quicker than doing it with the fun drugs in the hospital.
Do those holes grow back, by the way? I need to ask my doctors that. Feel like my hips must look like Swiss cheese now. Seeing as how my hips are, as far as I know, load-bearing, I’m pretty sure I’m not up to code anymore.
Had trouble sleeping last night, although I was in a great mood last night. Oddly I think the non-Dex steroids might be IMPROVING my mood. Lord knows I had enough between Friday and Monday, Jesus. Even a good mood couldn’t keep the pain away though — spent most of the night uncomfortably sitting at my home office desk and fighting off what seems like a minor cold and a minor temperature (99, at 101 I’m supposed to call the doctor). Came to work today since I missed Monday and will miss Thursday (Dara day this week) but popped an Oxy when I sat down and I’m just trying to relax and not move my hips.
Sorry for the inelegance of the first part of this entry — just sort of core dumping the last 4 days and I can’t think 100% clearly today thanks to the body aches and pains. I wanted to jot some notes down about just that, however. I’m wondering, as I’m sure a lot of the doomed do, if it’s possible to separate out what is causing what pain-wise. While driving to work this morning I was thinking about this — whether the bone pain I am feeling is the Myeloma and not just side effects from something else. Hard to know — I’ll ask the doctor but I’m guessing that there’s no way of knowing.
I’ll be honest, I’m a lil’ freaked out. Just a little, mind you, but there’s something truly un-nerving about watching parts of your body and its systems fail. The irony that what’s beating me up so bad (presuming this is chemo drug-related) is actually working so far hasn’t escaped me either. It would be nice to catch a little break here — I have yet to really have phenomenal results from any of the five or six treatments I’ve done so far, which really is a bit scary.
So is the NOT knowing. Which drug’s working on me? Revlimid or Dara? That’s the problem with so many variables. I was demo’ing a new app on my iPhone last night to help me track dosages for hospital and doctor visits since I can’t remember all of this stuff, and the sheer number of things I take always makes me wonder how you really know which one’s putting in the real work.
Anyways it will be interesting to see what they do Thursday with my Dara treatment.