Friday, November 9, 2018

Cruise Control

My post this morning was written as my bag of darzalex was being hooked up. Darzalex is preceded by a massive dose of benadryl and a recently modified dose of dex/steroids. Surprisingly it is when I feel particularly strong and particularly invincible. We have to tell ourselves this.

Dex comes first as a drip from a small bag. Then benadryl, also a drip, in a small bag. The benadryl hits first though. I get loopy, slur a few words and then I'm knocked out for about an hour and half. Benadryl is key. I had a severe allergic reaction with my first infusion of darzalex and ever since we need to be safe that it doesn't happen again. I wake up from my uncomfortable nap during which the dex has taken over. My left leg has always been prone to a little bit of restless leg syndrome. With the dex, during my nap, that leg is moving pretty haphazardly. It takes some work for me to find a comfortable napping position. After another hour, I am fully into the darzalex drip and I'm wide awake.  I use this opportunity to write, text or email people and watch netflix. I have my hat pulled down low over my eyes and of course I am nicely tucked in under my purple Minnesota Vikings blanket. I'm an absolute creature of habit with my treatment and this process never changes. I am typically the first patient in the infusion room and I have my usual chair. Today someone beat me to my chair and I had to switch up where I sit. There's 11 reclining chairs in the area, so I got one close (but not too close, so I wouldn't have to chat too much) to my normal chair.

Now at I'm home, I'm doing a mental debrief of the past few days.  I see clearly that the chair situation was apropos to today and to this week. Dr. Phan always talk about wanting to be on cruise control. Since starting darzalex, I basically am.  I'm in a great place with my myeloma.  And that's why we are looking at my overall health. It's time to look at everything else. Cruise control is nice because I can be in a somewhat state of denial. It's necessary. I know what I have, but I work to be able to do everything that I did before myeloma, with some limits.

Occasionally, I'll have a stretch of days where I am reminded of how fucked up myeloma and cancer can be. This week has been one of those stretches. A few friends are experiencing the non-cruise control part of their myeloma and cancer journey. It's sad and without explanation. With myeloma, an incurable cancer, we can't escape it. We don't go into remission, we don't ring a bell. I can also say that we've come a long way with treatment, and people's survival expectancy and quality of life are improving. Darzalex, for instance, didn't even exist as a treatment option when I was diagnosed.

As I've said before, cancer is basically my identity now. And while I'm working to find my passion and have various other identities, cancer is number 1. And that's ok.  It's nice, though, when I have days where myeloma is tucked away in the back of my brain. It's nice when I have days that I don't wonder when the other shoe will drop or when cruise control will end.  Nonetheless the reminders to remain vigilant and smart and healthy are clear.

1 comment:

  1. Ah Matt, you have hit on so many points that only us myeloma patients "get"!! I could comment on each of your paragraphs, as you write our lives. Yes, choosing our chairs is a funny thing in the lab, especially for long timers like us. Many cancer patients with different diagnoses, come and go. We are lifers, like you said, no bell to ring, no final treatment... well one day there will be... but we treat and treat and treat, and the majority of the world just doesn't get that myeloma is INCURABLE!!
    Now that my Darzalex ride is over, I actually kinda miss the long infusions with Dex and Benadryl battling each other, and the long chair time, just "relaxing". I would take my Dex at home several hours before going to the chemo lab, and then that infusion bag of Benadryl was always such a kick, as it mellowed Dex and makes us "woozy without the boozy" lol
    And yes, as so many don't understand with Myeloma, the concept of cancer, our cancer treatments, and our cancer status, becomes our life. So many quotes and statements out there about not letting cancer become our "identity"... but how can it not, with our daily, weekly, monthly forced focus on it and our battle to live.
    But I do hope you find passions that you enjoy, while you're in cruise control and beyond! So glad you're getting a good ride from Darza, Dex and?? Hope it lasts to infinity for you :))


Berenson Oncology Success Rate

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