As of June 5, 2017, it has been 10 years since I was diagnosed with Hodgkin's disease for the first time. I’m 33 years old and am four years in remission, and I have had a lot more experience with cancer and chronic graft-vs.-host disease than I ever thought I would know.
‘My world flipped upside down’
I live in Spokane, Washington, and had a very fun and exciting youth of working and starting on my career with my older brother Brian. We started a company putting in sprinkler systems that grew very rapidly over the years.
It was the summer of ‘07, and I had swollen lymph nodes on my neck and armpits. I didn’t think anything of it ‘til I was late for work a couple days in a row from sleeping in. I never had done that before, so my brother took me to the doctor for a check. They told me right away that I had lymphoma. My world was flipped upside down. I began testing and chemotherapy shortly after.
I was told that my disease would have a 95 percent chance of a full cure, and I was hopeful for my future. Eight months later, I completed chemo and radiation and was eager to get back to work.
(Now, I wish I’d never done radiation. But, hey, I was a kid — I just did what they told me to do when I was diagnosed.)
It wasn’t six months later when I had my first check-up CT scan and was told that the cancer had relapsed. Now I started to worry.
‘Beginning to crumble’ after multiple transplants
My doctor told me it was time to go to Seattle for a transplant [at Fred Hutch’s clinical care partner, Seattle Cancer Care Alliance, or SCCA]. I was part of a study to do two autologous blood stem cell transplants back to back with high-dose chemotherapy — my disease was fast-acting so they wanted to hit it with everything they had. [Editor’s note: This means Brad’s own blood-forming cells were taken out and then put back into him after chemotherapy, twice]. I spent the next few months trying to get my medical insurance to cover the two transplants, which they would not approve. Finally I was able to get the state to cover the second one two days before I needed to go to Seattle to start treatment — it was kind of a miracle, in a very unexciting way.
As the weeks went on, I became weaker and sicker, but always kept my head straight so I could just get through it. I finally finished the treatment and went home to start healing. It took some time, but I stayed strong and continued my life as best as I knew how to.
Two years had gone by and things were good — until I went in for another CT scan and found out I’d had my next relapse.
I was working that day and my doctor called me to give me the results of the scan. I immediately knew that there was a problem. She told me the cancer came back and I needed to start more treatments. Then I told her, “I’m going to get another opinion first.” That’s when I transferred to Cancer Care Northwest. (CCNW does a great job working with SCCA to get me the best treatments today. I wish now I would have gone there right from the beginning.)
I was very terrified for my life, so I started researching my disease a lot, and I switched out my diet to a healthy one — I was just doing everything and anything to help my situation.
I went back to Seattle to have an allogeneic blood stem cell transplant. [That is, Brad’s own blood-forming cells were destroyed and he was given new ones from a donor.] This transplant was different for me. I made it through and did OK but just was “off.” I started to slip with things at home. I was very weak. I gained 100 pounds then lost 100 pounds when the prednisone [steroid] was reduced. I had roughly 30 surgeries, all kinds of chemotherapy and radiation, I’d been on oxygen — I was beginning to crumble.
‘I traded my cancer in for this disease’
My life has been so up and down. It can change in a second, so quickly that you don’t know how to deal with it. But with the help of my family and friends I once again survived this awful burden.
In this last couple of years I’ve still been in remission, but I have chronic graft-vs.-host disease, or GVHD: It seems that I traded my cancer in for this disease.
[In graft-vs.-host disease, the transplanted donor immune cells perceive the patient’s healthy tissues as “foreign” and attack them. The chronic form of GVHD that Brad has can be debilitating, damaging patients’ eyes, skin, lungs and other organs.]
Before all this, I was not even close to knowing what GVHD was or what I was in for. My road to recovery had just gone from months to years.
I received extracorporeal photopheresis. [ECP is a light-based therapy for the blood that sometimes stimulates cells to fight the GVHD.] I did 88 treatments of photopheresis and prednisone; also, I was immune-suppressed with the drugs sirolimus and tacrolimus.
It was the [transplanted cells from my] donor and the GVHD that finally knocked the cancer back into submission for me. So now I go to Long-Term Follow-Up every four months for close watching and testing on the chronic GVHD. My transplants and my GVHD care is all at SCCA, and they follow up with CCNW in Spokane with everything else. I’m going to go to Seattle next week to see Dr. Mary Flowers [director of the Adult Clinical Care Long-Term Follow-Up Program] because my GVHD has decided to flare back up.
I still have a strong will to live and pray every night that I will be able to grow old and have had this be just a bump in the road. I’m very weak and scared. I continue to go to work every day with my brother Brian, but he does all the work while I watch. I can only walk for a few minutes before I have to sit down, because my breathing is so bad, and I’m in very high, chronic pain every day. The best thing for me has been my family and getting out as much as I can before I’m permanently disabled.
To those out there reading this: It may seem like a lot, but I would do it all over again to stay alive.
‘It’s not going to get me today’
A big part of dealing with it is having something to live for. I have a very small family and a few really close friends, and I’m 33 and I’m now single with no children — I still have a lot of great things I want to do. I always kept working my job with my older brother, and while doing that, I was able to keep my head out of the fact that I have a very serious problem going on. I have also recently gotten close to God, and I’m getting baptized next month — and I’m meeting new people that way. So it isn’t all bad. I learned — and am still learning — that each day I spend alive I’m going to enjoy to the fullest, whether I’m sick or feeling well.
It might get me in the end, but it’s not going to get me today. Don’t ever give up. There is always hope for every last one of us. It might be bad, but our doctors and researchers, like Dr. Flowers and her team, are coming up with new protocols every day. I know how incredibly hard it is, believe me, but hang on tight and continue your journey with good spirits, and you will survive.
Thank you for reading my story. I hope it helps. God bless.
