Inspirational Stories

The date was May 15, 2015, in the local office of the hematologist/oncologist and I was given this message after the results of my bone marrow biopsy taken a week earlier. 

“You have myelodysplastic syndrome (MDS), and it appears to be aggressive acute myeloid leukemia (AML). At your age (71 at the time) there are just a few choices: ride this ‘wave into shore’ with intermittent regimens of immune suppression chemo when warranted for a ‘reasonable lifestyle,’ maybe 3 – 4 years; explore a bone marrow transplant, but a lengthy waitlist is a risk since you have no siblings, and if a donor is found, your odds of success are ~20% survival assuming there is a 10 point perfect match; if you choose to do nothing we understand. Why not go home and think about it, and let us know how you would like to proceed . . . but soon!”

My challenges back to the doctor mentally came faster than I could get them out of my mouth as my mind raced with possibilities. Can I go on my annual golfing trip for a week that I have attended for eight? Does this mean that my cycling days are over after I made my “every other day” normal ride of 85 miles just yesterday? Shouldn’t this have shown up during the past two years when I cycled >10,000 miles in less than 24 months? Why no symptoms on my one-week skiing trip to Utah last month on double black diamond trails? How did this happen in only 45 days between blood tests? Why don’t I have any other symptoms? Are you sure of the result's accuracy? 

Rewind to 2008 when I was rushed to the hospital with a blockage caused by diverticulitis. I endured a temporary colostomy that was reversed seven months later. I concluded that the biggest dodged bullet was no intestinal cancer, and I could now start recovery from two serious abdominal/core surgeries in six months.

Fast forward to 2010 when during my normal annual PSA screening with my oncologist- urologist, he discovered prostate cancer after a needle biopsy. I immediately underwent radiation therapy. Slowly recovery took place from a variety of urinary and bowel disruptions. Win #1 was in the record books for me.

In February 2015, once again at a normal annual physical, after three blood tests showed weak counts, as a precaution my primary doctor sent me to a hematologist oncologist as a best practices measure. The hematologist simply could not figure out why my blood counts were compromised and moving in the wrong direction. She kept up the pursuit as to the cause of the low counts finally declaring that the last and only conclusive diagnosis would be from a bone marrow biopsy. May 15 was more extensive than portrayed above when I received the diagnosis. I rapidly concluded that knowledge was power, and I was going to be the most powerful person as my own advocate. I also continued to cycle albeit not the distances of the past 23 months. I had five monthly sessions of what I call “baby chemo” (Dacogen) to try and knock the diagnosis down giving me time to get in line for a bone marrow transplant (BMT). On the last day possible, at day's end, the BMT doctor and staff at the University of Miami had to have my decision, “ride the final wave to shore” or fight. My doctor's credentials were impressive ― more than one BMT per week for three years (175 cases) with less than 10% mortality. My final question was, “Do the odds change after the results of the baby chemo for five monthly treatments, do my odds get any better than 15–20%?” Heck, at 15-20%, I could get better odds at any legitimate blackjack table, so I was not inclined to fight. My buddies in the room with me were shocked when in a quiet tone, the doctor revised it upward to 50%! In disbelief, while looking at one another, we asked simultaneously to repeat what he had just said. 

The Be The Match search identified a perfect non-US, 10-point match, a female, never been pregnant, 21 years of age, and an exact blood type/Rh factor match. I jumped toward the doctor and the BMT coordinator eager to sign and permanently launch my fate in his hands. 

GvHD still plagues me with a variety of nagging side effects, however, two weeks ago, I rode 56 miles with an average speed of 14+ miles per hour. Win #3 was in the record books for me.

Where is Win #2, you ask? Prior to my May 15, 2015, diagnosis of MDS/AML, I was diagnosed with malignant melanoma on my back. Immediate surgery achieved a good margin, the first cut leaving me with a clean tight 4” long scar as a memory, a cancer patient’s version of today’s “ink” (tattoo), perhaps.

However, I wanted to share the joy and benefit my donor has brought to my life (and my friends and relatives) with her generosity of the gift of life bestowed on me.  I am back to riding my bicycle and have even gotten back up to 60 miles per ride. My blood counts are higher than they have ever been, and I am thankful for every breath of every day because of her thoughtfulness and generosity. It is difficult to express thanks in writing like this, especially to someone you do not know, as to how much her gift of life means to me. Since it is a struggle to put into words, I thought she should know what actions I have taken to pave the way as a legacy for others who may walk in my same path in the future as a way of saying thanks to her. It is one way, maybe the only way, for me to share with her how appreciative I am for what she did for me. Since I can no longer give blood, I have elected to give of myself along with my fiscal resources. I have volunteered to speak, write, or share my story with support groups for individuals who share my condition (such as the organization where I received my transplant). Be The Match brought her life-saving gift to me, and The Leukemia & Lymphoma Society (LLS) provided support at all phases of my disease. I have planned for my estate to help people who require financial/patient services support during or after treatment of blood cancer or any cancer, including finding a donor for a transplant. Hopefully, I will live and prosper for a long enough period of time, thanks to my donor, to provide a legacy for others to benefit from and hopefully prosper because of what she did for me.

May God bless you and keep you, my donor. I think of you and what you have done for me with every breath I take.

Update: recent Win #4 occurred on August 7, 2023, when I had a stage 1 squamous malignant tumor removed from my left lateral cheek.

This is not the end of my now nine-year survival journey, just the history of a few stops along the way.