Been a few weeks, but certainly some busy ones.
After the first month of Revlimid I had my monthly appointment with the local oncologist. Although we didn’t know it at the time (took blood tests at that appointment), the Revlimid seemed to be working. My igG went from 3,996 on April 28 to 2,628 on July 18. My igA and igM are moving in the right direction as well, and my Kappa and Lambda light chain (free) numbers did too. This has continued through August’s tests, although not as significant a drop in the igG.
BTW I couldn’t explain those numbers if I tried, save to say they are the 5-6 markers that the doctors track my disease with.
So good news? It’s impossible for me to be optimistic. Not that I don’t feel it, I just won’t admit it. Nothing has really gone right with this disease for me in the last year, and every time I’ve even attempted to summon some hope life has beaten me so far fucking down I’m just not even going to bother. It is what it is, I hope it continues, and at some point I hope I can reduce the Revlimid dosage.
I had a six-month skeletal survey as well this month and the results were good — no new lytic lesions and no progression on the one I have on my hip. I was kind of worried about that because I’ve had some weird bone pains in the last few months and I was just waiting to find out my bones looked like Swiss cheese now, but no worries yet.
On to the less fun stuff — so after month 1 on the Revlimid, my CBC test showed that my white blood cell count was extremely low. As a result the doctor wanted to put me on Neulasta, which helps with that. As one shot is around $3,000 they had to get approval from my insurance company. In the meantime I started up the Zomeda infusions again (bone strength), which has always had some gnarly side effects. The first dose is usually the worst, though, so when I got the flu-like symptoms the next day (a Saturday) I didn’t think much of it.
Then the cough started, and my temperature went to 102. So I started up the Levaquin, per the doctor’s standing orders when I get a high fever. For the next few days I felt like I was making progress and then that next Wednesday I fell off a cliff. Zero energy, cough so bad it was bringing tears to my eyes. We were afraid I might have pneumonia so off the hospital I went for eight hours of tests. I actually was happy to be there, outside of the inconvenience to my family — they put me on oxygen and Dilaudid and it was the best I felt in a week. Anyways, turns out I had a viral bronchitis, which took a few weeks to get rid of.
I’ve noticed that the Revlimid’s effects are cumulative, much like the Velcade was. Towards the end of my last cycle I was really feeling the fatigue, badly, and what’s more the off week (I do 21 days on, 7 off) I felt noticeably better. Kind of scared about this cycle. I’m also scared that the rate of motion in my numbers on the next test is going to decrease like it did between month’s 1 and 2. Because, really, what I needed was more stress in my life.
Mentally and emotionally this has been a bad month outside of my week off. The time in the hospital and the sick days before it was difficult — feeling so helpless and bearing the full brunt of what it means to have a compromised immune system really drives home how sick you are when you have something like this. Spent a lot of time on my back thinking about life, and death too. One sick day before the hospital day (or perhaps after, my memory is going) I watched about 10 episodes of Chopped that I had DVR’ed. I swear in every other one a contestant chef had a parent die early, usually with devastating impact.
I’m haunted, repeatedly, by visions of my daughter asking my wife “where’s daddy?” It never goes away.