The Diagnosis

"Doctor, doctor, give me the news. I've got a bad case of lovin' you."

Bad Case of Loving You, Robert Palmer, 1979

Diagnosis #1 August 25

I received a call from Sally Ceneaux, the administrative director for Texas Retina's macular degeneration study, on Thursday, August 19. My recent lab results showed an abnormally high white cell count, and she suggested I contact my physician. I had blood drawn at the MCNT Plano office on Tuesday, August 24. The next day, I received a call from Britney Epstein, my PA, telling me to go to the nearest ER as possible. Both calls turned out to be lifesaving. Confused and concerned, Linda and I headed to Medical City Plano. Covid-19 was spiking at the time, so the ER was crowded. It took about six hours to get in, have blood drawn and get the labs back. They confirmed that my white blood cell count was extremely high and growing rapidly. And that is when we heard the word, Leukemia, for the first time.

Diagnosis #2 September 2

There is nothing fun about a bone marrow biopsy, but it is a necessary tool when trying to identify the specifics of your leukemia. The process is like trying to pull a stubborn cork out of a bottle of wine, except the cork is bone marrow from your hip. Within 72 hours, they were able to identify the specifics of my cancer: Acute Myeloid Leukemia + Philadelphia Chromosome.

"Plus Philadelphia Chromosome" raised the bar for cure dramatically. With those three words, my cancer had gone from the most common and treatable of all Leukemia cancers to the rarest and most aggressive variant. The probability of success dropped dramatically, as did our hopes. We were emotionally and physically drained. Jackson Browne's 1977 hit, Running on Empty, aptly described the two of us.

We started treatment the next day.

The Diagnosis Gets Real

Dr. Bhushan doesn't sugar coat or hold anything back. He explained that AML + Philadelphia chromosome is incurable through chemotherapy alone. To achieve remission, the disease requires a bone marrow transplant. The bad news is cut off age for a transplant is 75, and I'm 76. I have the least treatable variant, and I've just been told I'm not a transplant candidate. Without a transplant, he said I might have 10 to 12 months. All I heard after that was the last verse from Styx's 1979 hit, Renegade, and the accompanying pulsating drum beat: "Hangman is coming down from the gallows, and I don't have very long."

This was the lowest point for us. I'm not going to lie, there were a lot of tears shed over the next 24 hours. Sharing with family didn't make it any easier. But the next day, our good friend Dave Monaco suggested we call Amy Roseman, a parent from our teaching days at Parish Episcopal School. She set up the call with Earl Young, and, between the two of them, they brought sunshine to the dark path ahead and restored hope.

Earl Young, a 1960 Olympics gold medalist, had contracted the same disease at 70. He had a bone marrow transplant at 71 and has spent the last ten years traveling college campuses to raise awareness about Leukemia and the need for donor registration. Amy is the Director of Patient Engagement of DKMS, an international non-profit organization dedicated to the fight against blood cancers and blood disorders and managers of one of the largest bone marrow donors registry in the world. Their message was the same. Stay strong. Stay dedicated. And NEVER give up HOPE.

Diagnosis #3 October 5

Double pneumonia, the flu and the common cold had crashed the party of my first treatment. Not much progress had been made by the first treatment. Most of the 28 days were spent trying to rid my body of the fluid in my lungs and around my heart. So, instead of moving on to Phase 2 treatment, we are repeating Phase 1. All 28 days of it.

Diagnosis #4 November 3

Well, it's interesting when your well-meant words come face-to-face with reality. Having recently completed a do-over of the Phase 1 treatment, we were expecting good news from the previous week's biopsy. News like, "Wow, your numbers are looking really good!"

Not so fast. The October numbers did not meet expectations. While bad and good cells have been destroyed, the Philadelphia chromosome cells have been more resistant and are growing back faster than the good cells. So, we are going to try two drugs that have shown success in the treatment of other leukemia variants.

At this point, we were pretty discouraged. Two long hospital stays had produced marginal results. I felt as if we were in the bottom of the 9th inning with two out and going into the bottom of the order. When I shared this with a long-time friend from the Bay Area, he said, "What the hell. Batter up!"

And as I walked to the plate, I heard the chorus of John Fogerty's 1985 hit, Centerfield, echoing in my head..."Put me in, Coach..."

Diagnosis # 5 December 8

In the six weeks since being released from the hospital and on new drug #1, we've had good lab results. Today, we got the real verification, the results from bone marrow biopsy #5. Only 10% of my blood cells were infected, down from the nearly 90% when this journey began back in August. Dr. B has added new drug #2 to push us closer to the goal of 5% or fewer infected cells.

And as Linda and I left Dr. B's office, I'm pretty sure we were both humming the chorus to Pharrel Williams' 2014 hit song, Happy.

Diagnosis #6 January12

Five weeks into new drug #2, my numbers remain essentially the same. We are told to have patience and stay the course until the next biopsy. The 2009 Bon Jovi hit, Livin' On A Prayer seems to fit the situation.

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