Myelodysplastic syndrome patient
- Moved back to Seattle after receiving a second opinion at SCCA for his myelodysplastic syndrome diagnosis
- Received a bone marrow transplant with his brother as the bone marrow donor
- Resided at Pete Gross House during the 100 days post-transplant
After a seven-hour surgery for glandular cancer in 2011, I thought I was done with cancer. But four years later, I was diagnosed with myelodysplastic syndrome (MDS).
My name is Alec Hill. I grew up in Ballard, a neighborhood in Seattle, and met my wife, Mary, when we were in grade school. We have two daughters. I’m a former dean of the School of Business and Economics at Seattle Pacific University and past president of InterVarsity Christian Fellowship. And, thanks to SCCA, I’m also a cancer survivor — for the second time.
A diagnosis and move back to Seattle
My first symptoms started in March 2015, when I briefly fainted. I wasn’t out for more than half a second, and I bounced right back up, so I didn’t think much of it. But the next month, I was in Chicago on business when I suddenly felt flu-like symptoms — I had to go back to bed in the middle of the day. The following week, back home in Madison, Wisconsin, I had a bone marrow biopsy done. That’s when I received the MDS diagnosis.
In hindsight, the diagnosis made all the sense in the world. There had been a steady decline in my health. I’d lost seven pounds in the first few months of 2015, experienced a new level of fatigue and felt anemic.
I was told that this new cancer was unrelated to the glandular cancer. My third chromosome was damaged, which is unusual for MDS. I was relatively young for an MDS patient; the average age is 72, and I was 62 when I was diagnosed. All around, I seemed like a rarity.
It was a no-brainer to get a second opinion at SCCA. Mary and I knew about SCCA and Fred Hutch’s reputation before we left Seattle in 2001. After receiving a second opinion at SCCA confirming my MDS diagnosis and describing me as a high-risk patient, we decided to move back to Seattle immediately. We had already decided to leave Wisconsin, so we just ended up moving back a little earlier than planned.
A very familiar donor
Treating my MDS would require a bone marrow transplant from a donor with a similar genetic profile. I was fortunate: My older brother, Grant, was a perfect match. However, he was 64 years old, and donors are typically required to be younger in order to produce an adequate quantity of stem cells. Still, despite his age, Grant was my best possibility of a cure. My oncologist, Dr. Bart Scott, said it would have taken too long to search the international donor pool for another match. I fully trusted Dr. Scott, who is also a cancer survivor.
On his own, Grant could only produce about 40 percent of the stem cells needed for the transplant. However, he received a “super shot” at SCCA that increased his cell count by an additional 42 percent — and that was enough. It was the right call to proceed with my bone marrow transplant.
On August 15, I received the transplant of Grant’s cells. This was after being prepped beforehand with intense chemotherapy and full-body radiation treatment. I was enrolled in a clinical trial where half of us received radiation, while the other half did not. I was later told that the patients who were receiving radiation were having better outcomes, so they switched everyone over to receiving radiation.
For the first 23 days post-transplant, I had no white blood cell count at all. It was horribly scary. I was in a zombie-like state, waiting to see if the new cells would take. Those days felt very long and I took 50 pills a day. But 40 days after transplant, I had a second bone marrow biopsy done, which confirmed that my brother’s cells were grafting.
Finding our community at Pete Gross House
Mary and I live in Edmonds, about 35 minutes away from SCCA. Transplant patients need to be within a 30-minute drive of the SCCA clinic during the 100 days after transplant. I didn’t want to take any chances with Seattle traffic, so we stayed at Pete Gross House.
Honestly, it’s a weird community because we’re not supposed to interact with other patients, since we’re all auto-immune deficient. But, of course, everyone does. You cheat and get to know other people. You see them in the blood draw room, you see them in the waiting rooms — and you just talk. Staying at Pete Gross House was ideal for a lot of reasons, and the community we discovered was a bonus.
Living a full life
Today, I’m busy doing things that really count to me. I’m mentoring 14 InterVarsity staff and teaching again at Seattle Pacific University (nonprofit management) and Regent College in Canada (leadership). I just finished my second book and serve on a national board. And I’m a peer-to-peer mentor at SCCA. When SCCA patients are first diagnosed, they can be paired with a cancer survivor to talk and learn about that person’s experiences. Mary and I also enjoy camping on the Olympic Peninsula.
I didn’t bounce back to my normal life right away. About six months after the transplant, I got graft-versus-host-disease (GVHD), a common side effect for people who have received cells from a donor. Thankfully, taking benign steroids for eight months kept the GVHD at bay, and when I stopped taking the steroids, it didn’t come back.
In the spring of 2016, I also worked through feelings of survivor’s guilt. Losing people in my trial cohort and at Pete Gross House was hard. It was emotionally exhausting. Two things helped me get through it all: my faith and my wife. I was able to turn my survivor’s guilt into survivor stewardship.
You’d never want to call cancer a gift, because it’s an ugly beast. But it can be used as a tool to clarify what is truly important in your life. For me, that means serving others and living each day well.