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.