Wednesday, February 21, 2018

Spoiler Alert

A few years back there was Lost. A TV series about a group of plane crash survivors on a remote island. The show focused on their attempts to get off the island and their attempts to understand the island. I've been thinking about it lately as I sort out some crazy dreams I've had.

I've written previously how I was sick for a couple of months prior to being diagnosed. Fatigue, fevers, night sweats, anemia. It all came to a head when I went to Las Vegas for a friend's birthday.  I got so sick after only being there for a few hours (and not making a single bet). I had terrible chills, fever and was so damn tired. I went to bed in the afternoon and woke up the next morning feeling better. But I knew I needed to fly home asap. I'd been going to my primary care doctor for two months and we'd been testing for everything...except cancer for some reason. That morning in Vegas, walking through the casino to meet my friend for breakfast before I left, I had a powerful sensation that I was dying. It's hard to describe but it took over all my senses and seemed very real, very scary and very sad.  Within a couple days of returning home, I was hospitalized and within a week I was diagnosed with multiple myeloma.

A few months after being diagnosed, we were still trying to find a drug mix that worked.  During this time, I  was having nightly dreams of driving in the hills on dark rainy nights. I had a destination, but my stepfather was riding shotgun and kept throwing up obstacles to prevent me from getting to where I thought I needed to be. These dreams eventually went away as we got control over the myeloma. Note that my stepfather passed away over a decade ago.

Fast forward to today.  For the past nearly three weeks I've been battling the flu or cold or some kind of respiratory infection. I felt pretty horrible. I finally started feeling better a couple of days ago. I had to skip treatment twice while I was sick and I hate missing treatment. Luckily, now that I feel better, I'm on schedule for Darzalex this Friday.  I saw Dr Phan last week and told him what was going on and he reminded me that pneumonia or infection is often what gets myeloma patients.  This is something all myeloma patients are aware of.

I also told Phan about the crazy dreams I was having. The most vivid was one that woke me up at 2 AM during week 1 of the illness. I woke up, sat up in bed and I thought I was already dead and that my purpose moving forward was to get ok with my life; that I needed make my life and my legacy memorable.  I'm not catholic but it felt like what I imagine is purgatory.  I tried to write down as much of the dream as possible. It seemed so real and had so many moving parts. It seemed to fill in many gaps in my memory.  What's interesting is that I've accepted my  myeloma fate. well, I thought I was ok with it. But I think I say that when I'm doing great and can be in denial. But the sensation of being in purgatory left me feeling that I have some work to do. I need to add lasting meaning to my life. I need to clean up the past and solidify the future.

I'm reminded of my favorite boxer George Foreman, who, after a particularly difficult fight against Jimmy Young, in the locker room, claims to have visions that pushed him to a spiritual rebirth.

Phan thinks I may have been sepsis (I had to look up the definition) which can lead to hallucinations.  All I know is that two weeks after these dreams I'm still trying to sort it out. 

The good news is I'm feeling much better. Myeloma numbers look great. Creatinine is 2.03, easily the best it has been since I was diagnosed. WBC and platelets are up. Went back to the gym yesterday and off we go. 


  1. I've been on Darza since August and it has worked pretty darn well. M spike has consistently been .05/.09 so far. Also doing the IVIG monthly since the beginning of the year, I think. I manage to make it to the gym on the treadmill or elliptical when it's not too cold to walk outside. Very happy to be able to do the weight machines as well. Right now I'm working on my back (T11 compression fracture) muscles--- doing some floor yoga back work as well as the lat/back pull machines. Assisted pull ups work for me, too.

  2. There appears to be a good memoir out in June called, "Sick." The writer examines her Lyme disease-- not cancer--- but definitely relatable for us.


Berenson Oncology Success Rate

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