Friday, September 13, 2013

Exit Strategy, Routine and Random Musings

There was a 1979 movie called North Dallas Forty. It was loosely based on the Dallas Cowboys (my absolutely most hated team ever, by miles).  Nick Nolte played Phil Elliot, an aging wide receiver who will do whatever it takes to keep playing.  A scene early in the movie has him struggling to get out of bed in the morning. He has a career’s worth of aches and pains. Old injuries stiffen up over night and his pain killers from the previous day have worn off.  He manages to get up, takes his meds/painkillers and bounces back.  And then it’s off to practice.


Yesterday I felt exactly like this.  My whole freaking body ached. It was a pain getting out of bed.  I took my meds (not painkillers, instead cancer drugs), but they didn’t help and I went to work and I dealt with the aches all day.  


Yesterday was day 1 of cycle 17 of maintenance.    Typically a chemo day is work followed by gym followed by chemo followed by insomnia.  Yesterday I did make it to work, but was tired and yes achy (and I am whining a bit now).  Usually enough days away from my previous chemo, I am feeling greatBy the time chemo day arrives, I feel better than I’ve felt in years.  Chemo ruins that, for a good reason.


Anyhow, yesterday I didn’t have that great feeling prior to chemo. I tried my best to keep a semblance of my routine and I forced myself to go to the gym.  I made it, but can’t say I was super productive.  

Lately I’ve been getting a small case of night sweats.  Right before I was diagnosed and for a couple of months after diagnosis, I would get horrible night sweats.  I’d be soaked every night. We'd lay a towel underneath me so I wouldn’t drench the bed.  Getting minor sweats now is a bit disconcerting.  Mind you we have been in heat wave and nights are pretty toasty. We have AC so the house is at a decent temperature.


Before and for many months after diagnosis I’d also get afternoon chills followed by a 102/103 fever.  Having cancer, I need to be vigilant about controlling fevers.  Fevers can be sign of infection, a real no-no for myeloma patients.  Any time I’d get a high fever, it’d be a trip to the hospital for at least 5 days while they tested me for everything possible.  Those days in the hospital were the absolute worst. My myeloma was getting worse and it took us a while to find a drug mix that worked. I can honestly say there were a few times that I’d lie in the hospital thinking about my exit strategy.  I’d wonder what would be the most painless way to commit suicide.   I never got to the point where I had to seriously consider it. 

 It's been over a year and a half since I’ve had a fever. It’s been lovely.  Yesterday though, at Phan’s office for chemo, I had just over a 100 degree fever.  Very low grade.  Phan wasn’t too bothered by it and was ok with moving ahead with chemo.  

For the first several months of my initial treatment, I’d sleep during chemo. I’d be cold, needed a blanket and always watched a movie.  For the past year or so, I work or read or talk during chemo. I’m warm, don’t need a blanket and typically don’t watch a movie. My treatments take less than 2 hours so there’s not really enough time to watch a whole move.  It was a full house at Phan’s for yesterday’s treatment. All of the infusions chairs were being used. Damn you cancer.  Everyone is so damn nice that I am fortunate to have met them and that’s a plus.  A weird movie was playing called The Little Black Book. It was about 10 years old and starred Brittney Murphy, who got her start in Clueless and  recently died from a drug overdose, I think.  The point is that I watched the whole thing. It wasn’t necessarily good, but I watched it nonetheless.

If we packaged up the aches, tiredness, minor night sweats, low grade fever, sleeping during chemo and watching a movie at chemo and you can guarantee I was a little worried and paranoid.  My numbers are good though.  Creatinin is at a record low. Both Berenson and Phan are very pleased with my numbers and how I’m doing. Seemingly, we have the myeloma under control.  All good, right?  But notice how I added “Seemingly”. I throw in a qualifier.  Underlying that sentence is my thought bubble that says “yes, everything is great, doctors are happy and there is nothing to worry about. However, I’m a little nervous anyway”. Go away thought bubble. Let’s stick with the facts.  Today I feel great. I am high on dex.  I rode in today, as a little test. Leslie wasn’t thrilled given how I felt yesterday.  But I rode in and it was great. My pace was good, no problems catching my breath.


The take away of all this? Myeloma is a tricky one.

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Berenson Oncology Success Rate

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