I just found out that I’ll be in the BIC for five more hours today, after waiting an hour for my labs to come back. It seems I have low hemoglobin, which explains some of my dizziness over the past few days. It’ll take five hours to type and screen me (make sure I’m getting compatible blood; very important) and get the replacement blood I need.
It seems like a good time to write.
Due to bizarre circumstances, I’ve found myself an outpatient in the BIC all week without chemo.
One day I came in to talk to JJ, the nutrition specialist. I’ve lost 17%(!) of my body weight since beginning chemo two months ago. That’s over 50(!) pounds! That’s over 22(?) kilograms! While I’ve achieved my target body weight, it was by one of the most unhealthy means possible: cancer and toxins melting my muscles.
I don’t recommend this diet to even the most desperate of weight-loss-seekers.
I now have to eat 2,200 calories a day to just to maintain my body weight. I’m not gaining much–if any weight–right now. I’m also eating a lot of protein in attempt to get back some of that melted muscle. I’m drinking a bunch of high protein drinks and eating a lot of high protein bars. If I were exercising intensely every day, I think 2,200 calories a day would be easy to eat, but as it stands, it’s hard to get that much down.
I think my biggest motivator is that JJ has said that if I don’t stop losing weight, we’ll have to explore “alternative methods” of keeping my weight up. For me, this brings up bad memories of the last time I had leukemia, in which I had tubes up my nose, going down to my stomach, delivering liquid nutrition. I don’t ever want to do that again.
Speaking of things I don’t like: bone marrow aspirates and inappropriately quick talks about important and/or surprising subjects regarding my health.
I reported in an earlier blog entry that I was down to 1.3% lymphoblasts according to my latest bone marrow aspirate. Lymphoblasts are misbehaving white blood cells that cause leukemia. When I first came into the hospital, 90% of my white cells were blasting. After my first round of chemo, that number was down to 30%.
These numbers are gathered from the three things that are removed from the pelvis during a bone marrow aspirate: the marrow, the liquid around the marrow, and the core of bone. Those things are then sent out of the hospital for examination. The first test that’s run is on the liquid around the bone. It’s put on a slide and observed under a microscope, where the number of visible blasts are counted. This takes about two days, including travel time.
It was after the slide from my last bone marrow aspirate was examined that I was informed that my blasting white cells were down to 1.3%. Yippee! This seemed to be well within the 3% to 4% range my doctors had talked about to go on to my bone marrow transplant. However, my doctor decided that, because, a) I responded so well to the second round of chemo, and b) he was now worried about my special case (I can’t take anywhere the amount of steroids they normally give, because it could give me the dreaded pancreatitis) that I’d go through the exact same protocol I’d just been through with the hope of getting me down to 0% blasts.
In contrast to the slide, the core takes longer to examine, which I think has to do with it being sent to a specialty lab in Seattle. After being sliced into many pieces, it, too, is observed under a microscope by expert pathologists. The number of blasts identified in the core normally match those from the slide, or, in some cases, are lower.
During my last inpatient stay (two Wednesdays ago through last Saturday), through a series of questions and complaints, my mom and I were able to meet with my leukemia doctor. This was only the second time since being admitted that we’d met with him, and under the same necessary questioning and complaining methods . Normally, the doctors are invisible and can only be contacted through nurses. However, we’ve been so concerned about not knowing what’s going on, who’s making decisions about my treatment, and how and why those decisions are being made that we made enough impact for my doctor to appear before us twice.
The doctor explained a lot of information to us that we should have known before. He also nonchalantly dropped the fact that the pathology reports had come back for the core from my latest bone marrow aspirate and showed that I had 10% to 15% blasts in my blood. He said he didn’t really believe this number was true–although he made a point of pointing out how good the pathologists in Seattle were–because it was very atypical for the core to be higher than the slide.
My mom and I were stunned and only managed to ask a few general questions, such as, “what does this mean?” To which he responded that if my next bone marrow aspirate showed similar numbers, we might try a different therapy that was just approved by the FDA. All I know about it is that during trials, it gave people seizures. That doesn’t mean it’s bad, it just means another doctor only told me the bad things it can do.
I don’t know what else I’d ask the doctor about the radical difference between the slide and the core (up to a 13.7%!), but I know I felt like I’d been punched in the stomach when he so clumsily gave me that news. It hurt me and it stunned me. Worst of all, if hadn’t been for my my mom and my constant questioning and complaining, I don’t believe anyone would have told us about this major discrepancy.
At this point, I’m not thinking about it much. I’m certainly not ruminating on it. After all, there’s nothing I can do about it. I go in, I get chemo or blood, or whatever I’m told to do, and I hope the numbers from my bone marrow aspirate at the end of this month show that I can go into BMT. It still pops into my head, that 13.7% descrepancy, and when it does, I still feel like I’m getting punched in the gut. Not so much because of the uncertainty of what’s to come, so much as the feeling that “my doctor,” nor any of the others (a doctor does rounds every day inpatient) really didn’t see fit to tell me this important piece of information.
For the uncertainty, I have hope. Nothing I do, as long as I’m following the (*sigh*) experts’ orders, will guarantee the numbers at the end of the month go down to where I want them. But I hope they do.