Interesting Article.

An interesting, albeit disturbing, book review:

Tough Medicine (Newyorker.com)

A Reality Check.

Sorry, as usual, for not updating more.  The holidays were terrible and caused so much stress (family stuff) that it felt like all I could do just to survive, much less dwell on everything else.  I think I mentioned it in the last entry, perhaps not, but my mental health effectively waxes and wanes with whether I can keep the emotional walls up and not really think about the horror of this diagnosis.  When other things damage the wall, it all comes flooding back.

Nothing much is new, other than a better yet sadder understanding of those around me.  I wrote a letter to a parent that I never sent to clarify my thoughts, and realized it would suffice as an entry here for now.  Life is OK, or as OK as it can get when you just step around the elephant in the living room and try not to acknowledge it's existence. Anyways, a portion of that letter ...

Post-Thanksgiving Update.

I guess I can't really avoid this place anymore -- certainly tried over the last month, but it gets kind of silly to not blog at least once a month for something like this.  As I was trying to explain to my wife, and think I did at some point to my therapist, is that I can generally cope with having myeloma if I can focus on the short-term, the present.  It's when I start thinking about the future that things start racing downhill, and it's hard to avoid that when I write.

I ended up lowering my dosage of Revlimid in September to 15mg from 25mg.  I find out in a few weeks how that has gone -- the first cycle I did of that treatment the numbers dropped, but not substantially.  I'm hoping the numbers from the next blood test are better, since I feel like I've paid in blood for them.  Felt like hell for almost a week with some neuropathy and a ridiculous amount of fatigue.  I go back to Arizona on the 16th so I'll get their opinion as well.


I'm probably switching local oncologists here -- getting tired of the minor and major annoyances and outright fuckups I've had to deal with lately, culminating in spending 2 hours in one of their offices for a simple CBC test because some orders were put in wrong.  With the Mayo Clinic directing my care anyhow I'm less concerned about having the best local person I can find than finding one who can make my life easier, not harder.  Cancer's stressful enough without your oncologist making it worse instead of better.

It's a strange thing that I think most people with diseases like this must deal with -- whenever something goes wrong it's hard not to think "Jesus, I already have cancer, what now?" or something similar.  A lot of times that's just the pity party talking, but in some cases, like, well I dunno, DEALING WITH A GODDAMN CANCER CENTER, you'd hope people would step a bit beyond the "this is just my day job" attitude and get the work done properly.  It's not just about giving people drugs.

And I'm checking out some supposedly amazing alternatives.  We'll see what happens.

Mentally and emotionally the last month has been a roller-coaster, from the trip to Arizona through the vacation I took with my wife and daughter.  It was hard being in Scottsdale again, alone.  It felt like driving through a memory as I went through the neighborhoods I stayed in for months during the transplant.  And not a very good memory, at that.

At the start of November I took a vacation with my family, a Disney Cruise.  When your white blood cell count is low that seems like the worst idea you can have, and I'm not sure it wasn't, but the cold truth is that not knowing if you'll be alive next month or next year tends to affect your travel planning.  If I go downhill tomorrow, in other words, at least I got to do this trip with my daughter.

Who won't remember it, and was somewhat bratty all week, but whatever.  I tried.

Pondering ending my therapy (mental) this week when I go in -- I'm not sure I'm getting enough out of it at this point to justify the cost, the time, or what it's taking out of me emotionally to dig stuff up, and we're not really so much doing therapy in the sense I'd understand it as I am just unloading so I avoid doing it to my wife.  In the end I have a terminal and somewhat unpredictable terminal disease, and that's pretty fucked up.  I have narcissistic people in my life I can't really avoid dealing with, and that's pretty fucked up too.  I have a daughter that I adore but I worry, daily, I am going to mentally destroy at some point due to my untimely death from this goddamn cancer.

And that's the most fucked up part of all.

Back in Scottsdale.

Sitting in a hotel room less than a mile from the Mayo Clinic, having already done my blood work appointment and trying to fill up the time until I see my doctor tomorrow.  Then home again.

It's been a long, hard month.  One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow -- both I and the Denver oncologist believe it's too damaging to my immune system.  I've gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia.  Either the dosage needs to change or I need a new drug, I guess.

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.

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.

Long ride for only being a month.

Yeah I know it's been a while.  Been a long month and not a particularly fun one.