The best laid plans

It’s hard for me to believe that this month will mark 6 months since I ran the Boston Marathon.    Granted it wasn’t fast enough to requalify but it wasn’t my slowest time either.  Given the warm weather and what I had been through the previous year, I was a happy camper.    This past week I was content to just make 20 laps around the hospital floor (about a mile).     One thing the disease has taught me over the last year and a half is to redefine my expectations.

I’ve mentioned before that I tend to be a goal oriented person, one of those people who believes in the mantra “If you don’t know where you are going any road will get you there”.   Goals lead to planning and planning leads to setting milestones.  Once you set milestones (I’ll need to save this much money by next month in order to save enough for my vacation in 6 months) there is a certain expectation that if you stick to your plan and meet your milestones everything works out.    With Leukemia, not so much.  Oh sure, the goal is easy…to get cured.   But the plan to get there at times seems like a series of suggestions subject to change.  Kind of like using WAZE when you are stuck in a traffic jam and it is constantly rerouting you.

As you might imagine, this reeks all kind of havoc with a “planning guy”.    We have a plan, I know the milestones, I have certain expectations locked and loaded, I’ve psyched myself up…and then everything changes.

You may recall the plan from the beginning of the summer…three months of week-long chemo treatment called hypomethylation (prevents/slows down the leukemia cells from being generated) followed by a Stem Cell Transplant in Sept/Oct timeframe.   The first treatment went fine and as we approached the second treatment in August it was recommended we put in a Port in my chest to avoid all the daily needles in my arms.    On a Thursday they operated and put the Port in but by Saturday I had a fever and my chest was red and bulging (kind of looked like the hulk on one side).     When you don’t have any white blood cell defense one of the things that scare the wits out of the doctors is a fever.   So back into the hospital on heavy duty antibiotics and by Monday they operate to pull out the port.   It takes 7 more days in the hospital to get the infection under control.   The upside, we learned I’m allergic to one of the high-powered antibiotics.  When you break out in an all over rash they decide it might be good to find something else to give you.

Of course, this means I missed my second hypomethylation chemo treatment, soooo, change of plans.   Now they want me back in the hospital for a bone marrow biopsy so we can see how the disease is progressing and maybe start planning to go directly to a late Sept transplant.    We set a date at the end of Sept. for the transplant and put the hospital plans in place.

Just to keep things exciting, another change of plans.  The results come back from the biopsy and the leukemia is getting more aggressive.  In addition, there is a problem with the timing with the donor.   We have to move the transplant to the end of Oct. but it means they need to hit me with a round of chemo to attack the cancer in the interim.   This is not the outpatient hypomethylation chemo, this is the “in the hospital” HiDAC chemo (10x the amount of chemo twice a day for 3 days).   

   

I had forgotten how much fun it could be to be in the hospital with all the concierge care from the nurses (one button and they come running….my dog won’t even do that), the regular wake up visits during the night just to see if you still have a pulse (even my wife doesn’t do that), the broad menu of bland food, and of course the stomach twisting, digestion stopping chemo.    Five days later they send me home 12 lbs. lighter, sleeping 16 hours a day and with a shiny new Hickman Catheter in my chest (they put a tube directly into a major vein in your chest and then attach three lumens/connectors that dangle out on your chest so you can do all the “goesintta and goesoutta” stuff).

You may recall that with HiDAC chemo you hit your low point (nadir) 10 days after your treatment.  At that point your White Blood Cells, Platelets and Neutrophils are significantly reduced and your ability to fight off even the simplest of infections is gone.   A few days after I was home I started developing a sore throat and ear ache (my Neutrophils were 0.0 and WBC count was almost 0).    By a week I had developed a fever soooo, back into the hospital for some heavy-duty antibiotics and a bunch of tests to determine if it bacteria, fungus or virus related. 

As a side note, these emergency trips always seem to happen on weekends which means I have to go to the emergency room for initial treatment.   After spending untold hours there if you didn’t come in sick you are bound to pick up something before you leave.   The waiting area looks like a scene from the walking dead and once inside, the hallways are line with patients in beds hacking, moaning and bleeding.  Because of the risk of infection, they always stick me in a private room and then proceed to forget about me for several hours as they work on real emergencies.    Five hours later I get a ticket upstairs where I spend the next 6 days poked, prodded and scoped (not fun) by doctors from oncology, ear-nose-throat, infectious disease and internal medicine.    The ear and throat never clear up totally but by the end of the stay I’m able to swallow and get food down again.   Final conclusion, I have some kind of viral infection that will just have to run its course and given I’m no longer spiking fevers I can go home.

That brings us up to date on the last couple of months.  I have 2 ½ weeks before I go into the hospital for a week of chemo and then the stem cell transplant.  I have a good donor so the doctors are optimistic.  Mean time I’m in isolation, taking my anti-fungal, anti-viral and anti-bacterial medications, praying my blood counts recover and trying not to go postal from boredom.    I’ll try to squeak in one more blog before I enter the hospital as I don’t think I’ll be able to blog the first 3 or 4 weeks I’m in there.  That may be a blessing.