On Parole

I clearly have been in the hospital way to long.  Besides knowing the names and ages of many of my nurse’s children, I can recite my medical records number by heart (I call it my prisoner identification number).   Everything is automated these days and the MR number ties me to all the meds, procedures and blood that I receive…making sure they can charge me for every aspirin I took.   

 Here’s a few more clues you have been in the hospital too long:

-          You can order meals without looking at the menu because you know it by heart.  You even start playing games where you try to order an entire meal (including condiments) without any questions from food service.  I knew it was bad when I found myself give a new patient a run down on items to avoid.

-          Know the names of other patients and what they are in for.  There are a lot a parallels between being in hospital and being in prison.  Walking the halls can be a bit like a walking a prison yard.

-          You’re on a first name basis with the cleaning people, food service and both shifts of security guards.

-          The nurses stop feeling sorry for you and start giving you a hard time.

-          You hold the reputation for being the floor veteran.

-          You have more than 50 family pictures on your wall (we were close to 100).

-          The staff starts treating your family like they live there.

Well I did my time and after 35 days I was paroled to wait for the decision on our next stage of treatment.   It was pretty surprising how fast things turned in the last 6 days.  Blood cell counts shot up every day, I shed 10 lbs. of water weight, energy levels are up and appetite and sense of taste is coming back.  On the down side, the steroids for the Sweet Syndrome volcanoes have me wired, give you night sweats and make it hard to sleep.  In addition the drugs I’m on have messed with my heart (PVCs and QT span) which have the cardio DRs checking in on a regular basis.

Being on the outside, the one thing you have to watch for is a fever.    The immune system is still compromised and the ability to fight off infections and viruses are limited.  Our Dr. framed it this way “In an analysis of two groups of patients; those that responded to a fever and got antibiotics right away vs the group that did not, the first group survived the second did not.”   

 So when I spiked a fever last Saturday morning it was back to the hospital for more tests and treatment.  As usual it is never as straightforward as go in and get antibiotics.    After taking copious blood out of both arms, and swabbing for viruses we sit and wait for results.  Mean time the heart monitor detects my heart has gone into afib and now the cardio guys is all up in my face.    It takes 2 days in the hospital to get things sorted out and everyone to buy off on letting me go home.   It feels a bit like the line from Hotel California “You can check out any time you want but you can never leave”.  They never did come up with reasons for what caused either the fever or the cardio issues. 

 Now it’s on to the next phase of treatment.

 Like most people, I’ve asked myself the question “What would I do if I hit the lottery?”    Quit work?  Spend more time with the grandchildren?  Travel? Give a bunch away to charities?  When the Powerball drawings get big enough, a lot of us let our minds wander there.   In my case, maybe the question I should have been asking is “What would you do if you hit the lottery for a life threatening disease?”   

There were approx. 20,000 cases of AML (Acute Myeloid Leukemia) diagnosed in the US in 2015.   That’s only 1.3% of all cancer diagnosis and doesn’t even make the top 10 list of cancers (it is however one of e deadliest).  Breast Cancer by contrast had 231,000 new cases.   That makes the odds of winning the AML lottery in the US about 1 in 17,000 people.   It would be nice to get a thank you note from the other 16,999 people for carrying the load. 

 Having won my ticket to the exclusive AML club we now have to figure out what my prize is.   The prize in this case is the type of AML you have which is determined by the amount of chromosomal damage.   To do that, you give bone marrow samples before and after the first wave of chemo.  These are run through a bunch of cytogenetics tests to determine your risk factors.  Then like a game show you meet with the Dr. “game show host” who delivers the “Show our contestant what he’s won.”   It could be a 4 month no expense paid trip directly to Consolidation Chemo treatment if the diagnosis is favorable.   The alternative would be 30+ day adventure trip to the hospital for a Bone Marrow Transplant if they can find an appropriate donor. 

 So this weekend instead of being in Boston running the Marathon (or even just participating in the activities around it), I’ll be sitting home waiting to hear what is next with the treatments.   Yes it sucks but my revenge will be kicking the crap out of Leukemia and getting back to more Boston’s in the future. 

Till next week….