Hmm.

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 Zometa 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.

Beat down.

I feel tired today and light-headed.  Part of that is a lack of sleep — in fact I’m hoping it’s most of it, because if this is the new norm I’m not going to be a happy camper.

That’s part of the problem with all of this — you never really know what the new norm is.  Not to mention between being so sick last week, the Neulasta shot Monday — God only fucking knows what “normal” is like.

Yesterday was a difficult day.  I haven’t seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately.  Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday.  It’s all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.

Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself.  Is that strange?  I fear dying, not death.  I don’t want to feel pain, to feel myself slipping slowly over time.  I don’t want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails.  I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.

But death, on the other hand, I almost welcome in a way.  Not to sound suicidal, but when you’ve lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while.  Or maybe for good.

I hope this weekend is more cheerful than I feel right now — really down and depressed, and it’s so goddamn hard to find things to be hopeful about lately.