Saturday, March 30, 2019

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benadryl dose and get loopy. I doze off for an hour or so. Wake up, check emails, watch a movie and so on. The last hour is miserable. The benadryl has worn off and the dex has kicked in. I get antsy, grumpy and ready to get the heck out of there. I'll look at the drip bag about every five minutes to see if we've made progress. I'm usually the first patient in the office and can chose my regular chair in the infusion area. Today I strolled in about 5 minutes late (due to a sock change at home...had to put on my Vikings socks (after all it is Purple Friday)). That five minutes meant that I lost out on my normal chair off in the corner away from the coming commotion and away from the tv. Even the nurses mentioned to me that I lost my usual chair.

It's all about routine for me. I do my labs the same day at the same time, once a month. I always wear Vikings gear to treatment. I have my chair. I wish the doctor's office had "walk up music" for patients when they enter the infusion. You when baseball players walk up to bat, the p.a. announcer will play a song picked by the player. 

I skipped Berenson last month but saw him earlier this week. My labs continue to look good, so he was happy. Creatinine by the way was 2.03.  I have one more infusion before I hit the 8 year mark. Pretty remarkable considering where we started on the journey.  And life sure has changed in that time. Some good, some great, some bad, some horrible, some just meh.  Last year we did a bowling celebration for the 7 year mark. This year, no big celebration. I would like to squeeze in a Vegas trip one of these days. I think I'm waiting on the massive celebration for when I hit ten years, which will occur in the same year I turn 60. That will be quite momentous and at one point in time very unexpected.

What else can I tell you? Not much. I'm sure I mentioned that my MRI showed no issues. I also did a heart stress test and echo cardiogram, to ensure all the years of toxins haven't impacted the ticker. It's fine. 

So we carry on. Where it goes is a mystery and isn't guaranteed. But I can guarantee that next month I won't be late to my infusion and I'll have MY chair.


  1. What would your Walk Up song be?

  2. So glad all is well in your MyelomaLand Matt! How long have you been doing Darza? with Pom? and Dex? And so coincidental that we will both hit our 10 year Dx mark at 60. Me sooner than you LOL... later this year for me. I too stick to the symbolism of things. And watching numbers and the connections of those in our lives. How high was your Creatinine at your Dx? I'm always so amazed that with all the treatments I do, my body function is good. How the heck can we tolerate all these chemicals, and still be walking lol! Thank goodness for all the brilliant medical science researchers finding meds to keep us kickin! Keep up the good work Matt :)) Julie


Berenson Oncology Success Rate

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