Just a quick note — I re-themed the website today and added a links page and the promised Surgeon General’s warning about me and the blog. If anything seems broken or the new look makes you want to kick puppies into fans, please let me know!
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.
Sorry I didn’t post this on Tuesday; been in a bad headspace this week and wasn’t in the mood to write. Not sure I’m really ready either but I need to get a few things down and out of my brain basket.
So far so good on the VTD-PACE front. I’ve been fairly tired but mostly just dealing with the repercussions of the massive Dex dosage. I didn’t go into the exact dosing of this witch’s brew, but it’s:
- Days 1, 4, 8, and 11: Bortezomib 1mg/m2 IV push over 3–5 seconds or SC
- Day 1–4: Thalidomide 50–200mg orally daily at bedtime + dexamethasone 40mg orally daily
- Days 1–4: Cyclophosphamide 300mg/m2 continuous IV infusion over 24 hours daily + etoposide 30mg/m2 continuous IV infusion over 24 hours daily + cisplatin 7.5mg/m2 continuous IV infusion over 24 hours daily + doxorubicin 7.5mg/m2 continuous IV infusion over 24 hours daily.
That was taken from here, BTW, which is a pretty handy web page for chemotherapy.
I’m not feeling good. The problem is I’m not sure how to draw a demarcation line between what is happening as a result of the chemo versus what is happening as a result of marital issues. I feel pretty deflated, at least from the previous week, and I can’t easily sort out what goes into what pile o’ sucking as easily as I wish.
Physically I feel pretty run-down, but OK for the most part. GI is fine, blood counts have actually gone up slightly since last Friday when I was released (i.e., no transfusions needed) although they are all still pretty low. Nausea daily, including a weird almost insta-vomit situation when I sit crunched forward a bit. Pain is up there but I had a Neulasta shot Sunday which I think is the guilty party there.
My good attitude is pretty much gone, sadly, which I mostly attribute to my marriage. Not going into super details here but the net-net is that after so many months of peace, mostly driven (IMHO) by me beta’ing out of most issues to somehow make up for 3.5 years of Dex-driven Rich, we got into it this week and I’ve come to realize a few things that I had hoped were in the rear-view not only aren’t, but probably never will be. The unfortunate thing about trust is that once broken in a relationship, even a bad one (actually especially a bad one), there’s so much scar tissue left behind that it’s hard, if not impossible, to ever really get back to a pre-trust-issue place.
My wife thinks I’m Dexing out again. I may be, but I also was feeling really positive about things until Tuesday night and I’m not convinced she’s correct so much as anticipating and reacting to protect herself from a potential, not a reality. I don’t feel snippy, angry, negative (well I didn’t until that night, anyways). This past weekend I just took it easy, watched my mouth and did the usual steroid thing the Doomed do when given this much of this crap:
I posted that on Facebook and immediately had 8-9 friends tell me to come over.
Further, I don’t see any issues I brought up during our argument as anything abnormal. Sadly, although I’m happy that I chose multiple times to back off and cool down before I let something un-take-backable fly, all of this doubt has ruined my progress mentally/emotionally and left me adrift. Now I feel like an enemy combatant again behind the lines when I’m home, and that sucks. Mostly because I finally had let some hope creep in that we could reverse course on circling the drain, and every ounce of that is now gone.
Just once I would like actual SUPPORT during chemotherapy. Driving, errands, cooking — that’s great. It’s not SUPPORT, however, it’s busywork that would have been done anyway simply due to me working 50 a week. I’ve driven myself to just about everything except some stem cell-related stuff years ago and roughly 2-3 appointments/hospitalizations. In four years.
A hand held. Questions asked borne from caring, not rote. A hug. Hell I get more of that stuff from random employees at the oncologist. Instead at home I deal with never-ending verbal reminders of how I ruined someone’s life and subtle but obvious tells that no matter what I do, how kind I am, there is no way back. From a place that Dex took me, which seems kind of unfair. Also gone with the rest is the faith that post-me my legacy will be my daughter being told how awesome I was, not how much of a steroided-out prick I was by someone who fell out of love years ago in this and is incapable of understanding how important that legacy is to me.
Granted I never was Mother Theresa but I wasn’t THAT fucking bad.
Tell you what — when you go through hard times you really do see what kind of human beings are around you. Also, and this comes from someone who won a lot more in poker than they ever lost, someone sober’s first reaction is almost always the honest one. Tuck that away somewhere.
Unfortunately with my peace of mind went all of my serenity and ability to truly relax and rest at home, which is a shitty thing when you are trying to focus on a giant dose of chemo and effects that could be coming.
You get used to it, I guess.
I’m wondering when the other shoe drops with the cancer treatment. This has caused a decent amount of anxiety on top of everything else. I tried to cancel a lab appointment next Monday, for example (that’s a two hour commitment to me given where I work and live versus my oncologist) and was told that they need to keep it to monitor my counts tightly. So that’s like two weeks post-hospitalization?
Anyhow, met with a doc for a scheduled follow-up Tuesday who had nothing new to add except for prescriptions for an anti-fungal and a anti-bacterial. Have another meeting and more tests with another doctor on Friday.
Had a bunch of epiphanies about life in the last few weeks that I was going to consolidate here but I don’t feel like it’s the time to get into those. I did however decide that at my funeral, assuming anyone actually listens to my requests, they play this song. Posted this up Friday when I left the hospital:
Was listening to that last Friday and realized that it meant a lot more to me than just a allegory for leaving the hospital after a week.
Sometimes I feel
Like I’m almost gone, yeah
A long, long, long way
Way from my home, yeah