My Left Turn - Leukemia

My Left Turn

As Fall turned to Winter in 2022, my life took an unexpected left turn.  I began having inflammation in various part of my body - my neck, my back, my shoulders, even my eyes.  What was strange was that the pain would be one place one day and somewhere else the next.  What was going on?  I scheduled numerous doctor's appointments trying to figure this out.  What was more frustrating was I couldn't even get certain tests or specialist appointments until deep into 2023.  I woke up on New Year's Eve and my feet, knees, and hands had all swelled.  My wife Stacey decide that enough was enough and carted me off to the emergency room.  They ran a lot of tests showing nothing, but the ER doctor did not like the looks of my blood tests.  She consulted with an Oncologist and had me admitted to Mary Washington Hospital.  In the meantime, my hands and legs continued to swell such that I could no longer walk nor even get myself to the bathroom.  I spent the worst weekend of my life waiting to get a bone marrow biopsy while having to be changed what seemed like hourly.  Once done, the biopsy confirmed I had Acute Myelomic Leukemia.  At the advice of the Mary Washington Oncologists, I transferred to University of Virginia (UVA) hospital in Charlottesville, one of the top hospitals in the country dealing with Leukemia and bone marrow transplants.

What is Leukemia?

Leukemia is a cancer of the blood.  There is no 'tumor' and the cancer resides within the blood and inside the bones and bone marrow where blood is produced.  Rather than normal blood, Leukemia produces something called blasts.  Left untreated, it will compromise one's immunity system such that some outside infection will kill you.

Science does not know what causes Leukemia.  There is some thought that one is born with it and at some point it is activated.  At the same time, there is no statistical evidence that the disease is genetic, passed from one generation to the next.  Leukemia just happens to some people - a left turn no body wants.

If you want to read more about Leukemia, I suggest you start here.

My Path To 'Cure'

I had some great doctors at UVA.  The best was the lead Oncologist, Dr. El Chaer.  He would only come talk to us when he had something new or worthwhile to say.  Day-to-day, this drove my wife and I nuts.  But, in retrospect, I appreciate it.  The quality of our fewer conversations was incredible.  The process for Leukemia treatment is highly individualized and tailored to the specifics of the disease as characterized by analysis of the biopsy results.  That analysis was performed by the Mayo Clinic and fed back to Dr. El Chaer.  More information flowed back over time as more was known.

The process started with a round of 'infusion' chemotherapy.  The goal here was to kill off most everything in my bone marrow, bringing my immune system down to nothing.  They then wait a week, take another biopsy, and go from there based on results (is cancer gone, almost gone, still there).  I was quite successful in this stage, eliminating ~98% of the cancer.  I also managed to avoid any major infections while my immune system was down.  My hemoglobin/platelet production picked up quite quickly, allowing me to go home from the hospital on 1 Feb, after a month in the hospital.  Normal course would have me meet with Dr. El Chaer in clinic to determine the next step.  I intervened before that, but let's not get ahead of ourselves.

There was some other work that got done in the hospital and I don't want to minimize that.  I entered UVA essentially bed-ridden, my legs, feet, and hands swollen and unable to operate.  They gave me medicine to drain off the swelling but getting to move around on my own was work.  The nurses would not let me just go on my own.  The fear of me falling was great.  Still I managed to progress from getting out of bed and sitting in  a chair, to moving around the room with a walker, to being able to get into the bathroom on my own (that was a big one).  I also managed to balance without the walker and get up and down consistently.  I cannot thank the Physical and Occupational Therapy staff enough for helping me push past both real and perceived limitations and being a capable human being again.

Genetic Markers and Tendencies

Using latest enhancements in both oncology and genetics, doctors are able to characterize an individuals Leukemia based on genetic mutations found from the bone biopsy.  These mutations indicate tendencies for how the Leukemia will behave over time.  My results came back with 6 mutations (average patient has one or two).  Of those, three were particularly bad.  The gist is that my Leukemia is nasty and has statistical tendency to come back even after treatments (chemo, bone marrow transplant, etc).  

Having mutations as I do essentially dictates an aggressive treatment strategy.  Thus, to fight it one should plan for multiple rounds of chemotherapy, both in- and out-patient, as well as bone marrow transplant.  This amounts to three-year battle if there are no set-backs.  Of course, mutations would dictate set-backs are likely.  So, as options were laid to me, best chance of success was to throw all my chips on the table against less than favorable odds.  I could be less aggressive, but that made odds even worse (in my mind a waste of time and resources).

The other option was to stop the active treatment, manage my pain and discomfort, and accept death when it comes.  This comes with the advantage of spending my time with my family vice in and out of hospitals while maximizing my quality of life for my remaining time.

Decision Factors

As I faced the decision of way forward, the following were factors:

•     Although my life has been far from perfect, I have no regrets and no 'burning' goals I need to meet.  I have endeavored build the foundation in my children for them to become productive and happy adults.  Aside from enforcing those teachings/efforts, I don't see anything drastically different that needs to be done.
• I cherish the relationships and resultant experiences I have had across my 58 years of life.  Though I have many small threads of incompletions and relationships I've not cultivated as best I could, nothing bubbles to the surface as a major incompletion - I can comfortably go to my grave today feeling I've said all I have to say.  This goes not only for my peers, but also with God.
• My life was coming to a major  cross-road in 2025 anyway.  That year marks a) my 60th birthday along with various retirement and Social Security eligibilities that come with reaching that age, b) 20 year anniversary with the Government and eligibilities that come with that, and c) my daughter's graduation from High School transitioning Stacey and I into 'empty-nesters.'  In my mind this would bring a major career transition.  I planned to enhance my technical skills, take job in commercial software development (no Govt. contracts, minimal bureaucracy, no denial  of technology due to stupid rules, and flexibility based on what I as an employee wanted and actual product needs of my employer). and work mostly from home, wherever I chose that to be.  You can throw that out the window if I am doing chemo -- no time, no energy, and all income feeding the medical bills.  So, I really have to accept that future is now dead.
• Lastly, what are the long term repercussions, financial and otherwise, of courses of action.  Medical events are the number one cause of bankruptcy in they US.  A small car accident with six month hospital stay will destroy the average family's finances.  Yes, I have medical insurance.  However, even having to pay 20% of $1M will wipe out an entire year of my salary.  Having state of the art treatment from UVA is great, but each time some doctor entered my room, there was a 'cha-ching' somewhere.  These costs don't go away when I die and they don't care if treatment is successful or not.  I could easily eliminate my children's opportunity for an education by putting on my armor and going to war with my Leukemia.  Why should I be such a burden only to die in failure two or three years from now?
• As Stacey walked the halls while visiting me at UVA, she had two occasions to overhear cancer wives begging doctors to stop the treatments and let their husbands have peace.  In the first few days at UVA, the social worker signed me up to have a volunteer who had similar Leukemia experiences to mine come talk to me for encouragement.  They never darkened my door.  Doctors quoted me plenty of statistics but evidence of success, to my engineering brain, was paltry.  Preachers will expound all the time how God will give miracles.  If they were that common, they wouldn't be miracles.  

With all this I have decided to forego any additional treatments, put myself under hospice care to keep me comfortable as I approach my death.  As you are reading this, I realize you are putting it through your own filters and reaching conclusions different from mine.  I just put this forward as my reasoning and decisions.  I am not right but am comfortable in my decisions.  I just wanted to document my process.

I plan to write more blog posts on more general and philosophical topics as I try to put my life into some kind of perspective.  Thanks for sharing in my journey.

Dan