Wednesday, July 8, 2015

Hit the Wall

It's been a while since I've wrote anything substantial. Just haven't been feeling it. There's nothing really noteworthy with my myeloma. But noteworthy is a relative term. And that's the thing with myeloma. Nothing going on doesn't mean we're kicking back worry free. In the past two months, I had a nasty cold that verged on pneumonia and hospitalization. We beat that back, avoiding the hospital, after finding an awesome pulminologist. I'd be lying if I said I didn't spend one night in bed wondering if that was my week to die. Then I lost a good friend to myeloma. Brad passing away is a tough one to move on from. Then I've had an achy back for a couple of weeks. Normally we'd let it go. But given I have myeloma, I've had to do a full body skeletal survey and bone density test. This Saturday is an MRI. Mind you, I'm claustrophobic, so this should be interesting. Also note, that my myeloma impacts my kidneys, I haven't had any bone involvement but the question is has my myeloma morphed into something else. Berenson thinks no and that doing bone surveys, etc is unnecessary. Phan on the other hand says we need to err on the side of caution. I am guessing it's nothing but we gotta rule bone issues out. And then this week I've been tired as all hell. It's a tired that is similar to the tired I was feeling right before I was diagnosed. So I'm thinking, ah shit, time to get off maintenance and attack the myeloma with one of the new drugs. But we did my full myeloma labs this week and all my numbers remain stable. That's good.  However I am hugely anemic, almost anemic enough to warrant a transfusion. I haven't had one of those in two years. Instead, yesterday I got a Procrit shot to bring my hemoglobin up. And through all this, I'm working full time, working out, crushing it and living life. Easy?  Heck no.

The summary: I'm still on maintenance, everything remains routine. A new cycle of maintenance starts next week.  All is good. But it's been a scary, nerve wracking, emotional, wall hitting month or two.

And that's myeloma. It never totally goes away. Every day, every week, every month is a challenge and a victory.


  1. I get it, Matt! Never a dull moment. Seems to me this is a down that should soon turn back up; too soon to be your turn, good friend! Always hard to lose a friend, especially when they die from your disease, My condolences.

  2. I wish I had your drive and energy Matt! You're doing great, hang in there buddy!


  3. Matt, every time I am not feeling good, or have an ache or pain, I worry it's the myeloma. But, so far, so good. Continuing my maintenance as well. Just had monthly labs drawn, see my Dr. for report in a week. And after Brad's passing, I more worried about the "Pollyanna" attitude I have, that I am doing well. It could all turn on a dime. But thank goodness we have each other to chat with, commiserate with and cheer on!

  4. Hi Matt, I re-found your blog when I Googled in "Dex crash" and found your post from Nov, 2013 and had a nice laugh on "our" behalf, as I too have that "love, Hate" relationship with Dex. Crazy how this stupid Myeloma battle is so similar for all of us... and battle on we do. I'm about a 1 1/2 ahead of you, as I was Dx 12.30.09. Anyway, just wanted to stop by and let you know I'm going to spend some time reading your posts, and I wish you the very best your treatments. Take care and battle the battle on! Julie

  5. Hope you feel better, I have gone through a fatigue funk lately as well. Gary


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.