A Message in a Bone

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.

I was walking down a crowded street in Santa Monica, California one a brisk afternoon, thinking about what I wanted for lunch when the text came in from my daughter. It was a copy of a message she had just received. It read: “Dear Emily, On Dec. 23, 2015, you volunteered to join the Gift of Life Bone Marrow Registry at a recruitment drive held at the Jerusalem Gold Hotel. At that time, you made an important decision to be part of a life-saving resource for patients suffering from leukemia and lymphoma whose only hope of a cure is a bone marrow transplant. We are writing to share the good news that you are a match for a 69-year-old man suffering from acute myelogenous leukemia (AML). You can save his life by donating your bone marrow, or stem cells from your circulating blood. The patient has likely exhausted all standard treatment options and your healthy cells may be his only possibility for a cure.”

When I got to the bottom of the message, I felt my legs begin to give out and I sank to the curb on the crowded boulevard. Passersby barely noticed as I sat there on the ground, legs curled up in front of me. I was stunned, and before I knew it, I began to sob.

But let me back up a bit and explain. Five-and-a-half years ago I was a healthy 69-year-old man, enjoying the autumn of my years, semi-retired after a decades long career in various aspects of the entertainment business, first as the co-owner one of the largest PR outfits in Hollywood, representing some of the most illustrious music artists of the 1970s: The Rolling Stones, Pink Floyd, Elton John, The Doors, Ray Charles and Earth, Wind & Fire, to name a few. Then, I worked as a movie producer of a couple of major films: Car Wash being my signature effort. Finally, after years of living large, including addiction at one time or another to most every drug, I got sober, pulled my life back together and ended up writing a few books about addiction and my years of recovery. My life was good. I had become a poster boy of my 12-step program. Physically, mentally and spiritually fit was the way I saw myself. I had a large network of sober friends and enjoyed good relationships with many of them.

I lived in a nice little duplex in Venice Beach, and could hear the waves break from my bedroom windows as I peacefully slept at night. I had enough money to live the simple life I had gotten used to. I was estranged from my wife for many years, but an active father in the lives of my 24 year-old son and 22 year-old daughter, who both had recently graduated college and were testing their wings in careers of their choosing. I had a beautiful, high-strung Bahamian girlfriend, who drove me crazy with some of her political ideas, but I appreciated how she knew what she believed in and stood up for those beliefs.

We were sailing along in the third year of our sugar and spice relationship when out of nowhere, I experienced shortness of breath climbing a flight of stairs one day. I didn’t think much about it, but that night while taking a walk on the beach, it happened again. This time it got my attention. “Whoa! This aint right,” I thought. Something is wrong.

When breathing didn’t get any easier over the next few days, I made an appointment to see my doctor and after a brief examination he recommended I see a well-known Beverly Hills pulmonary specialist. I thought he must be good, because he had a fancy reception area and lots of folks waiting to see him. After a very brief examination, he diagnosed me as having emphysema or COPD, as he called it. I was shocked. I thought only smokers got this, and I hadn’t smoked in over 35 years. He explained that since I had been a committed smoker in my youth, the disease had probably taken root then and it took this long for it to fully develop. Without any further testing, he prescribed a popular inhalant, which he said would alleviate the symptoms, and sent me on my way. Thinking this COPD might just be some kind of karmic payback from years of abusing the vessel I was living in, off to the pharmacy I went to fill my prescription.

Two weeks later, my breathing had gotten worse, so back to see the fancy doc, where I was informed that this was normal with emphysema patients and that we just had to find the right inhaler. I was now starting to question the competence of my well-known specialist who had this irritating habit of bragging about all the celebrities he treated. When I questioned the propriety of dropping names, he laughed and told me they would be pleased that people knew he was their doctor.

The new inhaler was of no help, and my condition continued to deteriorate, so I decided I needed a second opinion. Armed with a recommendation from a friend, off I went to see this new doctor. He seemed much more focused than the one I’d been seeing, and the first thing he said when examining my chart was that I should get a blood test, which had not been previously done. I was then told to go home and that he’d call with the results as soon as he got them. This was on a Friday afternoon, and early that evening, my new doctor called to inform me that I didn’t have emphysema, but that I had leukemia, and I better get myself to a hospital tonight — and that he didn’t mean tomorrow.

Is anyone ever ready for a call like that? I certainly wasn’t. Immediate thoughts of impending death rushed into my head. I called Sherri, my ex, but still my closest friend, who, along with my daughter Emily, met me at the emergency room of our local hospital in Santa Monica, near where I live.

At the ER, I was greeted by an attendant who insisted I sit in the wheelchair he brought to the entrance. The place had that antiseptic, cool smell that only exists in hospitals. We took our seats in the sterile waiting area and Sherri went to fill out the requisite forms. I tried to calm myself with deep breathing, but it seemed impossible. I couldn’t get my head around the suddenness of what was going on. Was I really this sick? After all the admission papers were filled out, I was put in the ICU unit and chemotherapy was ordered to start right away. “What’s the hurry, guys? Slow down, let’s discuss this,” I thought.

The oncologist who came to see me that night Dr. Marilou Terpenning, informed me that had it not been diagnosed when it was, I probably only had a few weeks to live. As it was, she said I needed to get ready to fight for my life. Once the shock of what just happened began to wear off, and the initial tests were performed, this very skilled doctor laid out what was in store for me: a few weeks of chemo to kill the leukemia, followed by a bone marrow transplant (BMT), which I needed if I was to survive. She didn’t pull any punches and explained the process of getting a BMT, which in my case would be problematic. Finding a donor requires a DNA match, which she told me is usually based on your ethnicity. “Good news,” I thought. “I’m a white guy.”

But she corrected me by pointing out I’m not just “a white guy” in the DNA sense of the category. I’m an Ashkenazi Jew, which is a separate and much smaller demographic. My chances of finding a DNA match, therefore, were considerably smaller. Also, my age factored into the equation. She explained that my DNA would be submitted to Be-the-Match, the bone marrow transplant registry and that they would try to find a match. I was scared. It felt like I was tumbling, face-first, down a rabbit-hole, dark and foreboding. I wasn’t so afraid of dying, but the thought of not being here for my kids terrified me. I know they had similar concerns. My son actually broke down and cried when he visited me on one occasion. Sitting on the edge of my bed, holding my hand, he said, “You’re not going to die, Dad. I won’t let you!” And he meant it.

I knew in that moment that I had to do whatever it took to make it through this ultimate challenge. Upon completion of weeks of hospitalization and continuous chemotherapy, I went into remission and was sent home to spend some time building my strength back up so I could begin the bone marrow transplant process, should a match and willing donor be found. Within a couple of weeks, I got a call informing me of the good news. Against great odds, a DNA match and a willing donor had been found: a young man living in Israel. It was back to the hospital, this time to the City of Hope, in Duarte, California, a world-class treatment center for cancer patients, where I’d undergo another two weeks of chemo to kill any remaining leukemia cells. The preparation for the transplant can be devastating. The final infusion of chemo, was a super-strong blend the nurse referred to as “the red stuff.”

“If leukemia doesn’t kill you, this cocktail might!” she said.

Surviving the liquid killer of whatever cancerous cells might still be lurking in my blood took everything out of me. I was a baby in diapers, not able to do anything for myself, but my head was still focused and ready for the transplant. I was told a courier was already on his way to Israel to collect the bone marrow harvested from my donor. He would return in 24 hours and the transplant would begin. The process is no more complicated than a blood transfusion, but the first few days of recovery and monitoring is critical. The body wants to reject what it perceives as an invasion by these new blood cells contained in the newly infused marrow, so it does what it can to fight against it. This can lead to what is called GVHD, graft versus host disease, and this is what commonly kills transplant patients. Fortunately, I only got a minor case of GVHD, with no adverse reaction.

To make a very long and very complicated story of my recovery shorter, I survived this harrowing experience, and within a couple of months I was back in my world. One of the things that went along with receiving a bone marrow transplant was the strong desire to connect with my donor. I was told by the folks at Be the Match that I had to wait two years post-BMT to see if my donor was willing to allow me to contact him. In the case of domestic transplants, you only wait a year, but with a foreign donor, the wait is two years. I don’t know why this is so, but it is. The reason for this extended period of time is that most donors don’t want to connect until you have survived long enough to be considered out of the woods. I was told it has detrimental effects on a donor if he learns that the recipient of his marrow has died, hence the long wait.

After two years, and I eagerly inquired about contacting my donor. I was told to fill out a standard form and write him a note requesting contact. I was not to give any specifics about myself, only a general inquiry to see if he was interested in connecting with me. I did what was required and waited and waited but received no response. I was told by the people at Be the Match that donors often don’t want to know the recipient. “If you die, the donor would be very upset, so they decide they’d rather not know who you are.”

They informed me that I could make one more request with another note, but if he didn’t respond, that would be it. I thought carefully about what I wanted to say to him and wrote a brief note as instructed. When I didn’t hear back a second time, Be the Match told me to move on and just be thankful I had donor.

Weeks later, as I processed the idea of never knowing my donor, I got a surprise call from Be the Match. My donor had just responded and was willing to make the connection with me. It turns out my donor is a young Russian Jew named Alex, who immigrated to Israel a few years ago. He was 33 years old, had a wife and two young children when he found out he was my match and volunteered to donate some of his bone marrow to me. Russian is his primary language and Hebrew is his second language. He speaks a bit of English but not particularly well, but we have become friends on Facebook and I was able to thank him for saving my life. Our conversations are very limited, but I’m glad to have him as a friend.

This brings me back to the synchronicity of the text message my daughter just received. Unbeknownst to me, when Emily went on a trip to Israel in 2015, as part of the Birthright Program, which takes young Jewish adults on an expense-free trip to the land of our ancestors, she volunteered to be join the Gift of Life bone marrow registry as a possible donor. Not only did Emily just discover she is a match to a leukemia patient, but that he is a 69-year-old Israeli, suffering from the same deadly form of the disease, AML, as I did. I was 69 when I was diagnosed. He is 69 years old. My donor was an Israeli. The man whose life Emily might be able to save is an Israeli. Now you can understand why I had the reaction I did. All of this seems too synchronistic to be a coincidence. What do you think?