The Good, The Bad, and The Ugly

The Bad: I lost a total of 8 pounds from Friday the 15th through Saturday the 23rd. It all started with bone pain and muscle aches around 5 o'clock that Friday. At work, I had to hunch over when I walked and take small steps. I went straight to bed when I got home and took my temperature, which was 98. Not too bad for me since my normal temp is 97. By 8 o'clock I felt like I was burning up so I took it again and it was 100.1. Nothing too alarming, but given how abnormal it was, I called Dr. K to find out if I should be concerned. He didn't think so and told me to call him in the morning if it went above 101. It didn't, but for the next few days, it kept oscillating between 99 and 100.5. I lost my appetite and didn't eat much between Friday and Wednesday. I felt better on Thursday and Friday, but still wasn't feeling as good as before. By the time I got around to weighing myself on Saturday the 23rd, I had dropped 8 pounds.

The Ugly: On Wednesday the 20th, I went in for my 1 month post-chemo bloodwork and bone marrow biopsy. The CBC results showed the overall WBC count hadn't budged in 10 days, which was very dissapointing; however, my neutrophils did edge up a little bit -- from 450 to 680. My platelets remained at an intransigent 105 (same as 10 days before). Then came the BMB. They took it from my left hip this time. It was a dry tap. No marrow (the jelly-like plasma inside my bones) could be aspirated. This scared the Hell out of me. I thought for sure that plenty of hairy cells would have been killed off by now and the marrow factory would have been back in some degree of production. After all, my CBCs since chemo had shown some progress even if the past 10 days were marginal, but then again, maybe everything in my blood was just settling back to the pre-chemo levels. After augering out the core, they tried to aspirate marrow four times to no avail -- it came up dry each time. On the 4th try I could really feel it burn. "You're almost there," I said, but they gave up because they didn't have a longer needle to go any deeper.

The uglier: Today I got the biopsy report for the core sample. It read "80% infiltration." Eighty percent? That's more than when I was diagnosed back in March! What the Hell is going on? "Don't worry about it" they tell me. "Sometimes it takes months to respond." Then why do you take the BMB at 1 month? Can you take another one next month? "No." Why not? "We'll take another one in 5 months." I'm confused and to top it all off, my total cholesterol is at an unbelievably low 71 mg/dL. Most people are happy if it's below 200, but I don't think my level of 71 is something to be happy about because my HDL (good cholesterol) is only 18. This is a dramatic drop from 28 just a month ago. A healthy level is 40 or above with a low risk target of 60 or higher. Dr. K admitted he doesn't know much about the cholesterol/HCL relationship and doesn't seem interested in pursuing the subject. He attributes my low level to inactivity, but didn't bother to ask me what my activity level has been. I haven't changed my activity level at all, other than getting sick for 4 days. With the exception of the sick days, I've either done 2 mile walks, or worked out for 30 minutes on the elliptical and exercise bike every other day. My request for a referral for a specialist who can help me went unanswered. I suppose that sometimes research scientists are so focused on one aspect of a disease that they can't be distracted by patients various requests, or they simply forget.

The good: My brain MRI was negative. There was a small signal in my front right lobe, but my neurologist assured me that this is very common and nothing to be concerned about. My tinnitus appears to be idiopathic, so he prescribed a sedative that may help to address the symptoms. Overall, it's helped me sleep, although I did awaken to a sharp single tone the other night. I had another CBC today. The white count edged up to 1.42 from 1.28 over the past 6 days. The platelets are now at 136, which is a number my body probably hasn't seen since November 2007. The absolute neutrophil count (ANC) is back up to 800. Something must be working. Hopefully, whatever it is, it's working on the marrow and not just the peripheral blood systems, but the BMB report is inconclusive at this point. For now it's just a game of "hurry up and wait."

My next CBC is in two weeks.