Inspirational Stories

My story starts a year and a half before diagnosis when a serious body surfing accident led to blood tests showing significantly low red and platelet counts. My primary care physician (PCP) retested several times in a short period, and when the counts came back closer to normal, she chose to stop her inquiry without scheduling further tests or redoing the same test, say, six months later to see if the lower values were actually correct. There was no discussion of what it would have meant if the lower counts were, in fact, an accurate representation of my blood health.

A year went by, and we were into the pandemic, and I began to notice the first real outward signs of what those lower counts meant. I’ve been a lifelong runner, and although I’ve run less as I’ve hit late middle age, I’d still run fairly long and fairly fast (twice weekly, seven miles at seven minutes or less per mile). Suddenly, my times dropped precipitously, and I felt far more winded when I finished. While I hoped this was just a sign of aging (or even that my workout routine had been affected by the pandemic), my sister convinced me I needed to get to the bottom of it, stat.

Me being me, I was busy with work and other excuses not to follow through, so it took a few months before I could get back in front of my PCP, and the same blood tests from the prior year which had been out of whack slipped significantly further. I was surprised and alarmed that her testing to find the problem began with a colonoscopy and endoscopy which she said were to determine if I had one of several types of cancer. I asked her if she thought I’d have left her office without further tests a year earlier if I’d known those would be the first things she’d test for. She didn’t respond.

After six weeks of fruitless tests, I became increasingly insistent that we needed to test for leukemia, the dreaded blooded cancer that had felled my mother and her mother many years before, even though it’s not considered a hereditary disease like hemophilia or even breast cancer. The cytogenetic test revealed a 90% likelihood of blood cancer with a 10% possibility of an equally insidious blood disease. My doctors hoped that since my bloodwork had been out of whack for some time, the follow-up bone marrow biopsy would reveal a chronic form of leukemia that could be treated by pills with no hospitalization and a good prognosis for long-term survival, but instead, it showed B-cell acute lymphoblastic leukemia (B-ALL). I was told to report to the hospital within 36 hours or my provider could not be responsible for my life.

I was put on the customary chemo regimen for B-ALL patients called CVAD which comes in two cycles. The multi-week stay in the hospital was difficult, all the more so as it was during the middle of the pandemic so visitors weren’t permitted. But I tolerated the first round of CVAD amazingly well, so much so that I was discharged before a prior set of patients who’d begun the treatment the week before. My combination of numbness and adrenaline seemed to be serving me well. This came to a crashing end with the second round of CVAD when the combination of methotrexate and cytarabine led to high fevers, nausea, intense headaches, lesions, and all manner of other issues. But the biggest problem was to come ― when I finished the cycle, I had a follow-up bone marrow biopsy which revealed my cancer spikes had more than tripled. I learned the term “severely refractory.” For the first time, I seriously contemplated that I was going to die.

On the brighter side, I was introduced to what would be my transplant team at Stanford, and my oncologist expressed great optimism that even though my cancer situation was grave, there were many more options that could get me to transplant, first and foremost, a relatively new monoclonal antibody, Blincyto®. Induction on Blincyto® was awful ― I later learned that was because the antibody was in a cage match with my cancer. But after the first few days, I tolerated it amazingly well, and when the cycle was finished, a subsequent bone marrow biopsy indicated no evidence of cancer. I was shocked and thrilled. It was the happiest day of my life.

At the time, having failed CVAD, there was no approved treatment for me to get into a more permanent remission other than an allogeneic stem cell transplant (note: now, longer-term Blincyto® dosing and CAR-T may be options). Reading all I could, and talking to my care team and former patients, I had some concerns about the effects of a stem cell transplant, let alone whether it would be effective in engrafting and keeping me cancer-free, but it seemed to be the only choice, and I had great faith in my care team. I was lucky that my only sibling, my sister, was a 10:10 match, and she was an eager donor. I reported to Stanford on March 31, 2021, for the transplant.

I tolerated the pre-transplant chemo well. The procedure went uneventfully, but as I’d been led to expect, the effects of the chemo hit with a thunderclap about four days after the procedure. At that point, the side effects of the second round of CVAD seemed like child’s play, and every day for at least a week felt like the worst day of my life. But things slowly and steadily improved, and on a more or less normal track, I was discharged on Day 24.

The first 100 days post-transplant are legendarily fraught, but other than some moderate skin GVHD, I was healthy and increasingly energetic, and I felt like I was getting back to my life more quickly and successfully than I’d have imagined. Right around Day 100, just when I should have been out of the worst, I woke up one more morning in intense pain, had no sensation in my right leg, and had lost control of my body’s middle functions. Scans revealed vastly swollen muscles and nerves, and when the swelling came down, a fist-sized tumor on my sacral bone. But a needle biopsy indicated that the tumor wasn’t cancerous, the swelling came down, and my recovery continued apace.

I hit the one-year anniversary of the transplant feeling great, about where I was pre-transplant if not quite pre-illness. One aspect of the allo transplant process is that the procedure wipes out your prior vaccinations and immunizations, so I needed to redo that process. While the wait of a year indicates that there is some risk that a less than fully formed immune system could have problems accepting the shots, I had no particular warning that this would be an issue, and as an extremely pro-vaccine person, I went into the process without trepidation. The vaccines are scheduled in a multi-part cycle with each sub-cycle having two to three shots a week for several weeks.

I immediately had a problem with the first tranche, shots for shingles and pneumonia. While the shingles shot in particular is known to create some issues for many, even the fully healthy, the relatively short period of serious unpleasantness didn’t fully end and left a residue of fatigue and shortness of breath. As this was going on, my wife and I had scheduled a month in Europe to celebrate the one-year anniversary. I’d been doing so well I hadn’t seen an oncologist in person for nine months, but I requested an in-person appointment to be checked out for greater certainty for the trip. My oncologist looked at me and my then stellar bloodwork and blessed the trip but scheduled an appointment for me in the pulmonary function lab upon my return.

Long story short, the trip ― Portugal, Spain, and France ― was amazing, but the issues I felt when I left only got worse, and I was barely able to get back under my own steam. Subsequent tests revealed rhinovirus, RSV, and most critically, organizing pneumonia. For someone who’d been running again and doing 15-mile mountainous hikes, I couldn’t get up a flight of stairs without pausing, sleep through a night without sitting upright so I could get enough space in my lungs to breathe. This started a year-long cycle with high-dose steroids seeming almost as bad at times as the pneumonia it was trying and struggling to cure. But after a year, my lung capacity was back to where it had been pre-transplant. It was time to try to resume vaccinations.

This time, my doctors recommended a far more cautious protocol, one shot at a time with a month+ in between vaccinations. But we never got that far since the first shot, the third COVID shot in the sequence approved for immunocompromised people, led to a second case of pneumonia. It took eight months for my pulmonary function results to get back to normal, but unlike the first time, there was significant lung scarring. And while I was recovering, a flu shot led to mouth, eye, and GI issues. It now looks like I’m off all shots for the foreseeable future, which creates its own set of issues. My health has generally stabilized, although there was a case of influenza A and a more recent case of rhinovirus showing that my respiratory vulnerability remains an issue.

I went into the process knowing it wasn’t going to be like fixing a broken arm, but the ups and downs have been more than I expected and hard to handle at times. It also has felt like it’s confounded my friends and family about what my recovery should look like. But I’m hanging in, continuing to believe that things will get better, if not tomorrow, next week, or next month, then sometime in the not-too-distant future. Huge thanks to my care team, friends, family, and The Leukemia & Lymphoma Society (LLS) which has given so much meaning to my life by giving me a great chance to connect to a wonderful community that fights so hard every day to live their best lives. I wish you all success in your recovery as you navigate this difficult process. Thanks for reading my story!