Wednesday, June 7, 2017

The Countdown Continues

I'm pondering pushing up my retirement date a week or two. I need to stick around to train my replacement who starts July 10, but after that I am free. I have been hugely tired lately. I get about 10 hours of sleep a night and it's not enough. Waking up in the morning is a real challenge. I'd be lying if I said it didn't have me wondering what's going on. I'm also on this weird slow weight gain. Granted I'm not working out much, but I watch what I eat. My labs all look good. My kidneys are better than ever. So I'm not sure what is up. It could be remnants of the ear/sinus infection.

I'm on monthly darzalex. Berenson wants to check my blood every couple of weeks because he's not sold on the once a month infusion. But our hands are tied. FDA says that is what we do and insurance will only pay for once a month.

I'm seriously grumpy and on edge. Lately at work people tell me they're jealous or say it must be nice or that I'm lucky. In my mind, I'm thinking fuck off all of you, I have an incurable cancer, that's not lucky. Right now those thoughts are in my head, but I'm edging close to reminding people why I am retiring. That will certainly make for elevator awkwardness.


  1. I think you should say. Maybe not awkwardness but better relationships and understanding. The fear is of being maudlin I would guess.
    My two cents.

  2. Wow Matt, can't believe our similarities in our MM journey. We're both on Darza- week 12 coming up for me next week. I'm also on Pom 2mg and 3mg (alternating daily) and Dex 20mg on Darza infusion days. I too am "forced" by stupid myeloma to retire from my 35 year career as a college counselor :(( And I too, let people know this not a "happy", "congratulations on your new fun life" type of retirement. Our retirements are due to our incurable cancer and treatment status and effects of side effects. We may "look ok on the outside", but most people just don't get the incurable nature of myeloma, and the continuous treatment we're on. And I too don't do well in the mornings. I stopped going into the office "early" mornings after my 12.30.2009 Dx. Myeloma has radically changed my life, and I too am pissed off about it, BUT super grateful for all the amazing medical science researchers that have developed all the life saving chemos and immunotherapies currently saving our lives! Again, congrats on your Kilamanjaro trek! Julie


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Getting My Learning On

Don't get me wrong, myeloma and cancer suck. But I will say that since being diagnosed I've had the chance to meet some of the most ...