I’ve lived a life that’s full
I travelled each and every highway
And more, much more than this
I did it my way
Regrets I’ve had a few
But then again, too few to mention
I did what I had to do
And saw it through without exemption
From Frank Sinatra’s ”My Way” written by Paul Anka and Claude Francois.
If ever there was a fitting theme song for my life right now, it is “My Way”. I left the beginning of the song “And now the end is near….” out of the lyrical citation, because I am hoping that with the help of my medical teams in Burlington and New Smyrna Beach, my demise is a lot farther in the future.
I have been diagnosed with acute myeloid leukemia (AML) and unfortunately am among the 30 percent or so of AML patients with a gene mutation which produces a poorer prognosis in people my age. That said, my last bone marrow exam and flow cytometry results were better than the initial ones in late November.
I have had a variety of maladies over the last several years…the golden years are not quite what they are cracked up to be. Sciatica and stenosis of the spine, gastric reflux, a couple of minor heart attacks, prostate cancer, cataract surgery in both eyes and a whole bunch of kidney stones at the top of the current top hits chart. The sciatic issues were going to be addressed by a microdiscopy in mid-October. It hasn’t happened yet as the pre-op physical revealed the elevated white cell counts (which kept right on elevating, up to a high of 151.66 on Nov. 19) and a referral to Dr. Mansour Gergi revealed the initial leukemia diagnosis. Treatments through the Oncology and Hematology facilities at the University of Vermont Medical Center, which included an initial 10-day in-patient session, have brought the white cell counts back into the normal range. I was able to transfer my care to the team at Advent Hospital in New Smyrna Beach, FL and round two of chemotherapy, originally scheduled for Dec. 26-Jan. 1 was delayed thanks to the good bone marrow results in my second biopsy. Round two of chemo is now scheduled for Jan. 16. If things continue to go well with treatments, a stem cell transplant may lie in the future. I would prefer to wait till I get back to Vermont and do the stem cell transplant in Boston in April or May, but if the window is going to close, I may have to set it up in Florida.
Through MyChart and the Northwestern Medical Center in St. Albans patient portal, I can see all of my various test results. I sort of know what to look for, but with only a layman’s knowledge, I tend to look for outside interpretation…good, bad or in between.
I hesitate to go to the emergency room every time something pops up. The gastric reflux can imitate a heart attack and diverticulitis has many of the same symptoms as a kidney stone. I take a Prilosec or other antacid when I get the heartburn feeling which could be either a gastric issue or a heart issue. If it goes away, I am okay, if it doesn’t it is off to the ER for what hopefully is a false alarm. The diverticulitis vs. kidney stone thing happened in Cape Coral a couple of years ago and was my first run-in with diverticulitis. I had another at the start of the current leukemia adventure and at first suspected that was the agent that was driving the high white cell counts.
My way is the doctors’ way as far as the leukemia is concerned, although I will ask for a couple of “quality of life” dispensations. Dr. Gergi told me to stop drinking scotch (or other alcohol) at our first meeting on Nov. 22. One of my residents during my hospital stay after initial diagnosis said a scotch or two in moderation probably wouldn’t do me any harm. With all due respect to Dr. Gergi, I elected to follow the resident’s plan. I went from Nov 22 until Dec. 19 without any alcohol. I had two scotches on my birthday, one or two in the week before Christmas and one on New Year’s Eve. My current plan has me going from three or four drinks a day to a maximum of two three or four days per week. In between I will drink Heineken Zero so I can still go out and socialize or have something with my clams or oysters. If I have to, I can completely abstain from alcohol, but that quality of life thing hints that abstinence is not something I really want to do. The liver numbers in my frequent blood tests will dictate the answers.
My way also includes being able to play golf, so I am switching my PICC line for a IR Port. I am used to the PICC line in that I don’t even notice it unless one of the ports starts pressing into my arm, but Dr. Arekapudi hates PICC lines due to infection possibilities and was delighted that I want to switch. The IR port will allow me to shower without having to wrestle my right arm into a plastic sleeve and to swim as well when the weather warms up just a little bit.
I have a couple of plans for coping with my co-pays, and after a conversation with Brian Wilcox, who has been my financial advisor for several years, decided to go with a line of credit from one of my current banks to pay the medical bills. I have quite a bit to go before I reach my co-pay limit on my insurance as it is a new policy, but my out-of-pocket costs should be capped at around $7000.