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.

Author: uwfacepalm

Father, husband, portfolio manager, cancer victim (multiple myeloma since 2013). Trying to navigate this goddamn disease as best I can while enjoying what time I have left via those relationships, friends, the UFC, gaming, MMJ, diving and helping teach it before this all went down as a PADI Assistant Instructor and a Dive Guide at the Denver Aquarium (well, before my white blood cell count went to shit thanks to the chemo/disease).

3 thoughts on “Post-Thanksgiving update.”

  1. Hey Rich. I think I finally figured out how to post a comment on your blog. Don't laugh… I know how computer savvy you are. I am getting better.

    I just wanted to say that it was great talking to you tonight. I can't imagine how difficult it must be to put in a full day of work, feeling fatigued, and mustering up the energy to give your family all of your undivided attention each and every day. You have such a positive outlook on life. You are my hero, and a true inspiration to all of us! I think about you all the time…. I wish you the best on your trip back to Arizona. Just know, I will be thinking about you.

    Like

  2. Thanks for the update Rich. Yes, I hear you. My #1 concern for my own life is devastating my kids' life if anything were to happen to me. Before kids, I didn't seem to care too much about life with the big exception – my biggest fear of losing my mom.

    Narcissistic people, they sure show their disorder when you need them most!

    I applaud you on your vacation – Disney is hard for anyone, it's a stressful place, and if you look around after lunchtime you'll notice every single child under 5 crying and grabbing at their parent's legs.

    Good luck on the 16th, and I'm glad you're switching oncologists. I remember being treated as a number when I had my firstborn, it blew me away – it was a big deal to me and nothing at all to them. Keep me posted, I will pray for you!
    Lynn

    Like

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