Some days you just KNOW what’s coming.
So all of those chemotherapies they gave me as a cocktail from Hell last week? Pretty sure the side effects are kicking in today. They certainly are kicking the crap out of my blood counts:
- White blood cell count: 0.9 (4.50-11.00 10^9/L)
- Red blood cell count: 2.34 (4.4-6.0 10^12/L)
- Hemoglobin: 7.2 (14.2-18.0 g/dL)
- Hematocrit: 21.3 (40.0-54%)
- Platelets: 27 (150-400 10^9/L)
For those who aren’t hematologists, nurses or just one of us dying from a blood cancer, it’s the hemoglobin that, at least for me, has been so low as to necessitate a blood transfusion. Seven is the threshold but there’s wiggle room, such as when you were at nine-something two days ago. I knew something was up this morning when I woke up exhausted after a decent nights sleep. That’s always such a bummer … bad enough to have to wake up in the first place when you don’t want to get out of bed, but on top of it immediately experiencing the low blood count version of this:
That kills me every time.
So to back up a bit, I had an appointment today for labs and more Velcade. My assigned nurse in the infusion center said that I didn’t actually need labs since there were some done two days ago. I didn’t think that was correct, given expected blood count drops from the VTD-PACE, but I specifically wanted to see my hemoglobin in case I was right in thinking my exhaustion was being caused by low counts so I requested the test anyways. Sure enough I needed blood, and there’s a lesson in there about being proactive with this stuff. After four years I’ve become fairly well attuned to what my personal meat popsickle is going through.
Always be your own advocate!
Unfortunately it’s kind of a Pyrrhic victory. As in “great, you were right! Now you’ll be here the rest of the day.”
While in the infusion room at CBCI I noticed a FELLOW patient of my doctor that I had spoken to briefly once before. I jotted down the blog address and gave it to him, a returned favor for a business card he had given me the previous encounter.
So for obvious reasons — well, at least obvious if you read the previous blog post — I’ve been thinking about the loneliness of cancer a bit lately. It just seems like Myeloma itself is forcing an isolation on me … which probably is about as clear as mud. Hmm … OK, see if this makes more sense: so there’s a 1 in about 143 chance, or 0.7%, that you’ll, err, catch? Do you catch cancer? Well whatever. So it’s 0.7% you’ll come down with a terminal case of ze Myelomas.
But then what if you’re not even in the target demographic? I know this disease is striking at younger and younger folks but when I’ve been to three different top level Myeloma centers I’m the youngest in the waiting room by a good 20 years. Minimum. I still would have yet to actually meet (and become great friends with) another person with Myeloma had it not been for a mutual friend.
Of that population, according to a slide I saw from ASCO earlier, only about 33% are online with some form of social media. So yeah, there’s only a handful of us that are easy to find.
Being singled out in society, even if quietly with a rare disease, is a weird feeling. A VERY weird feeling. Like last person on the planet feeling. Not knowing anyone who can really 100% sympathize, no fucking clue how you got this … I mean humans are no different than the moles you hit in a whack-a-mole game — safety is with the group underneath. It’s written into our genetic code. Danger is outside the herd, through the holes.
Nobody should have to fight alone. Especially this fucker of a battle. It’s just a bit too much to ask of someone — a lot too much, sometimes.
Anyways, hope if you get here, my friend, you know the door’s always open — email, Twitter, whatever. Nobody has to go through this shit alone. And I still have every intention of taking one of your classes!
Sat down with the wife last night. She says she’s still committed to our efforts and that, as I relayed Tuesday night’s fun and my thoughts this past week, we have “different recollections” of that night. Time will tell. This is another reason, however, why I truly feel some sort of social worker HAS to be involved with cancer patients. The side effects of these drugs can be overwhelming if you don’t know it’s coming.
What else … oh, the big ASCO meeting is going on in Chiraq this weekend. Oddly enough I didn’t know that (took about a week off social media this past week) until I talked to a cousin who is on his way there as part of the industry. Someday I would like to go to something like that — although I have a feeling the Adult Entertainment Expo or the local Cannabis Cup has vastly cooler giveaways, at least if you are travel planning based on cancer-related life expectancy. Plus you can get herpes easily at the AEE (there’s probably a booth that gives it away), although I’m not going to rule that out at the other two.
Either way I’ll re-Tweet (God, I swore I’d never say that phrase out-loud, sigh) anything interesting that us plebes can understand on Myeloma.
Hmmm. You know that’d be a neat business to own, come to think of it … a travel agency for the Doomed. Could call it “Fuck It Travel.” High-dollar vacations for people who decided their kids were too shitty to leave anything to and want to blow the savings on one last hurrah. I like it.
And on that note, I’m done. And as usual, I apologize for what I’m doing to this unit of new blood tonight.