Friday, February 1, 2019

Cruise Control Redux

It's the start of a new cycle. Day 1 of the 28 cycle is my Darzalex infusion.  It's about a 5 hour drip.  Then for the next 21 days I'll take my oral chemo at home, pomalyst.  I'm the first one in the office today and am able to get my lucky (lucky?) chair. I'm tucked away in the corner, headphones on, napping, writing, watching Netflix and pondering.

Let's get to the good, the bad and the ugly (Unknown Gets Lonely Y'all)

The Good:
My myeloma remains well under control.  In May it'll be 8 years since diagnosis.  My kidneys keep on functioning, Berenson and Phan are happy, I got a great haircut the other day, my warts are gone, I'm strong, healthy and over 2 years on Darzalex. In February, I start volunteering at the Marine Mammal Care Center.  I'm going to DC next week for a panel I'm on with the National Coalition for Cancer Survivorship and that's about it.

I"m super excited about the new volunteer opportunity.  The MMCC has been on my radar for a while.  Recently I met a long-time volunteer via a myeloma friend and he had me come visit the facility for a sea lion release and it's pretty awesome. It's helping sick or injured marine mammals (seals & sea lions primarily) rehabilitate in preparation for a return to the ocean.  As I get deeper into my survival, my empathy and love for animals has grown exponentially and the MMCC does great work.  Two books really changed my thinking and truly touched me: Spying on Whales and Beyond Words: What Animals Think and Feel.

The Bad:
I've said it over and over again, the emotional challenge of myeloma can be almost as difficult as the physical. For the past two months, I've had this odd nighttime, lying on my side twitching/spasming of my head and neck and recently my body. It's been getting worse. It's accompanied by a 24/7 dull ache in my skull and upper neck.  Phan sent me to a neurologist.  The first one I saw thought it was a reaction to my drugs and prescribed  (yo gabba) gabapentin, an anti-seizure medicine to take at night.  Night one no problem. Night two I got violently sick from it and threw up.  When the vomiting stopped , the body spasms which normally last only a minute at most, went on and on, with powerful ferocity.  Leslie and an ativan helped me calm down.  But I will honestly say that I thought that was it for me. I thought I was going to die that night.  (note that Dr Phan yesterday asked me disappointingly why I didn't go to emergency).  Well, I made it through it night and was able to get back in to neurologist 1.  His suggestion....put me on a different anti-seizure drug and suggested we do a brain mri. Another drug? Well fuck that shit!  How about take this a bit more seriously.  I wasn't really clicking with this doctor, so we switched to neurologist 2 and he prescribed a basic muscle relaxer to take at night: flexeril.  It's helping minimize the twitching and letting me sleep sans pain and vomiting. Generally though my night time neck pain has increased. We already know that I have arthritis in the neck from 7 plus years of steroids.  So far 4 doctors (Phan, Berenson, Neurologist 1 and Neurologist 2) all think it's related to the shit load of drugs I take and the toxicity in my body from these. They tell me they highly doubt it's the myeloma and I shouldn't worry about tumors or lesions.

Last week, in the middle of the day I had a massive all encompassing brain ache. Leslie took me to the chiropractor and he gently manipulated my neck and used lasers (yes lasers) to give me much needed relieve.  Note that a medicine and holistic approach to surviving is key.  Note also that despite the aches, I feel pretty good when upright and can work out, walk, go to gym and function normally.  

Despite assurances from my doctors I'm a bit paranoid and won't be satisfied till we get the mri done and I see evidence that it's nothing.  Phan and Berenson anticipate physical therapy for the neck.  I'm horribly claustrophobic and will absolutely be sedated for the imaging.  And I am in an absolute horrible mood.  The thought, in my head, that I almost died pisses the fuck out of me. I realized I'm not ready to go, despite my bravado that I have accepted what myeloma means for my fate.  I panicked because if I died I wouldn't be able to all the things I need to do.  I have things to do and self improvement to accomplish.  So I am walking around with heightened anxiety.  I can't stand getting in my car and driving right now. I'm just way too angry to deal with crappy drivers texting and such in their cars.  And trust me, you wouldn't want to be around me right now. 

Let's move on to the ugly:
While I want to not be around people right now, there's a loneliness to this cancer experience. Hard to explain. I've heard about from others and now I am experiencing it. I saw my therapist this week and talked to Phan, who continues to be the best doctor in terms of empathy and care for the individuals under his care.  Both said the loneliness makes sense but to work through it and continue to do get myself out there. To borrow from the Tidying Up lady, I only want to do things that give me joy.  The marine mammal center is such a great opportunity. It's animals and not cancer related!  It's perfect.  I'm looking at taking an art or a creative type class (per a wise suggestion from my mom).  In addition, I've gotten into cooking and love it. 

So the ugly isn't horrendously ugly. I'm plugging along. Seems like once a year I have some sort of health worry that makes me evaluate life.  And isn't that important when it comes down to it?

1 comment:

  1. Hi Matt, wow... yes!! The toll Myeloma takes on us... not sure which is worse... physically or mentally :(( Keep writing, processing, dealing with it... we have to "own" this monster on all levels... I'm going to send you a message later, time for my Velcade shot lol... and 8 Cytoxan pills... and of course, I took 10 lovely Dex steroid pills earlier :)))))))) Its Monday Medication Madness Day... Hang in there Warrior... Julie


Berenson Oncology Success Rate

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