One of the very few that initially sat around Joe Desena’s kitchen table with a handful of others when the idea of Spartan Race was born. Adventurer, tennis player, sports fan, all-round good guy. At the beginning of this year, he took his first steps on a trip that he neither asked for, nor wanted.
“It was back in November when I was the Race Director for the Miller Park event, then went to Salt Lake City for a tourism trade show, then almost right after to Fenway for the race. I could tell something was off, but it seemed much like a typical cold. It stuck around through Christmas time and I was starting to get concerned. I started visiting a clinic to get some medicine and to have my lungs x-rayed. Everything was coming up negative, but the cold was not going away.”
It was towards the end of January that Brian Duncanson noticed things were a little off. Even his wife had commented that he had bags under his eyes and had bad breath. He was wearing a much paler complexion at times, too. A routine visit in the early afternoon of January 23rd to the dentist where both he and the tech noticed a lot of bleeding from the gums set alarm bells ringing.
“I happened to have a dentist appointment at the end of January where the illness boiled over and showed itself. This finally led to the blood test that showed that my white blood cell count was 10x the normal level and I needed to take immediate action or be at risk of a heart attack or stroke.”
A whirlwind of a visit to a clinic, a blood test and by 5pm the same day, Brian was reeling from the news that he had Leukemia.
A man with no history of cancer in the family, who ate well and was a veteran of endurance racing and love of sports, Brian wasn’t who you’d expect to be the target of such a horrific disease. But there he was, dealing with the news that would drastically alter his life.
“It was amazing how quickly a simple blood test popped up the result, it took us a while to process the shock. Even more to be told I had Leukemia as it’s something most people just don’t ever consider. With the results as high as they were, we drove immediately to the hospital to begin treatment. No one said it at the time, but I was likely within a few days of having a major health event.”
Before he knew what was happening, he was the newest resident at Florida Hospital, beginning his battle against cancer and taking his first tentative steps into chemotherapy. He quickly found, however, that his battles weren’t confined to just the disease. The crushing monotony of hospital life as a patient quickly began testing him. He even made comparisons to the film The Shawshank Redemption.
“Staying in a hospital is very much like a prison. Your room is your cell, plenty of time to be alone with your thoughts which are often dark. The nurses are like the guards, while they’re trying to help you, they’re constantly watching and interrupting you. Some are nice and others are more robotic. Time moves slowly here and frequently you don’t know when you will get out. Even the food reminds me of what it would be like in prison. Poor food served on trays. But perhaps the most direct parallel is the fact that you take on a new pattern of living, similar to what a soldier deployed overseas would experience. If it’s long enough, you become accustomed to that life and it becomes hard to reintegrate back into society, particularly if you carry over some disability back into your life.”
As the first round of chemotherapy started, Brian eventually began to understand and cope with the daily white blood cell count review, the sleep interruptions, and his bag stand. He not only had to learn to walk with it so it could continue to feed directly into his veins, but had become “friends” with it, even jokingly pointing out that he sometimes looked like Neo from The Matrix films.
On Tuesday February 4th, the first round was complete. While he could now look forward to cooked meals at home as opposed to relying on the generosity of his family to bring things in for him, going home after spending the previous 25 days in his “Shawshank” life, he knew it was bittersweet.
“I had to close my eyes a few times on my way home from the hospital. It felt great once I arrived home, but it was strange going out in public and seeing people for the first time after my diagnosis. It was easy to get into the groove of being home, but there was always the next treatment hanging over your head. Each trip back to the hospital was harder.”
What was also hard was the financial strain that was beginning to take it’s toll on him and his family. Friends organized a tennis day, with various fundraising elements added, but even with their huge support and help and including the insurance, Brian still had a $20,000 hole to plug.
Brian then went backwards and forwards many times throughout his 2nd and 3rd rounds of treatment. It was around now that his mental grit was tested. Waiting on results, tests to be taken, information from medical staff all took its toll. Waiting on tests, waiting on results and even waiting on individuals to get back to him with information that would allow him to get on with things, whether it was home visits or it was further procedures.
With his white blood cell counts high and favorable, it was around this time that Brian was dealt another unfavorable hand. Doctors began giving contradicting advice regarding how the treatment ball was to continue rolling. It was a choice – a gamble – that Brian finally took after seeking further advice. Would he continue with chemo, or take the bone marrow transplant that he was urged to.
“My decision came down to finishing the four rounds of chemo and going on with life, or tacking on another 6-months of treatment. Both feel somewhat like a gamble because there’s no clear path to a cure. I’m literally betting on which approach might work best”, he admits.
“I’m at the beginning of the marrow transplant. There is still risk with the graph not taking. With Graph vs. Host Disease and then there is still the possibility of a relapse. All of them are bad. In the best case, the next five to six weeks pass uneventfully and my new immune system will be ready to fight on its own. For me it’s three weeks in the hospital, 2-3 months of three times per week doctor visits to keep my blood levels proper. As time goes on, the visits will get further and further apart.”
Brian still has a fight on his hands, but with his family, friends and Spartan community behind him, this terrible disease is picking fights with the wrong person.
Brian has gone on to write about his decision in his own words and goes on to urge others to join a registry of possible bone marrow donors. All it requires is a cheek swab and takes minutes to do.
“Besides wanting to build a successful company, we stated early on in the company’s development that we wanted to change people’s lives. This started as a pure fitness goal, but then evolved quickly into a set of principles known as the Spartan Code. It was a cool way to personify the ancient warriors and allow people to apply this code to their life’s obstacles. It’s been amazing to see how many people identified with the brand and made profound changes in their lives. Those stories are always the most interesting for me.”
“As I sit here in my hospital room awaiting stem cells from someone I don’t even know, I think about what motivated them. My donor was identified through the bone marrow registry and all I know about this person is that he is a 22-year-old US citizen. A pretty youthful age to have such philanthropic ideals. Was someone he knew touched by Leukemia? He’s obviously a youthful, strong-spirited person, with great awareness of the world beyond himself. And there it is – the Code. Then I start to wonder if this person has ever been to a Spartan Race and how great it would be if Spartan had caused a change in him that lead to this selfless act.”
“No matter what changes you are striving to make in your life, please allow me to encourage all of you to SPARTAN UP and join the bone marrow database. The larger the number of donors, the better odds for everyone. It’s a simple cheek swap and little time.”
Bone Marrow Transplant
After much discussion with my medical team, I made the decision to proceed with a bone marrow transplant. As previously discussed, I have a type of Leukemia called AML. When the doctors run initial tests they run your cytogentics, which are indicators of abnormal cell behavior and thus predict if your cancer will relapse. The cytogenetics sort out three classes: Favorable – who do not receive transplants; unfavorable – who must receive transplants; and Intermediate risk who have been a point of controversy. Some Oncologists feel that people with intermediate risk AML can obtain long-term survival with chemo only treatments. Cellular doctors believe intermediate risk requires a transplant.
I should clear up at the front of a Bone Marrow Transplant and Peripheral Blood Stem Cell Transplant. Bone marrow is obtained by aspirating the marrow from the pelvis bone. This is the process the doctors use to verify remission in cancer patients as well. Local anesthesia is given, but it’s a slightly painful procedure and a few days of recovery time.
The good news is that Peripheral Blood Stem Cell Transplant (PBSCT) is much less invasive and it is the preferred method of donating for blood cancers. PBSCT is a method of collecting the stem cells from the bloodstream called apheresis. The donor is given medicine to increase the blood levels, then the blood is drawn out of a large vein, goes through a machine that removes the stem cells, then the blood is returned to the donor. The process takes 4 to 6 hours.
Finding a match for the transplant is typically one of the hardest parts of the process. Siblings are typically tested first, but each one of them has only a 25% of matching. There’s only about a 50% chance for causations to find a match through the world-wide registry. That number goes down to 7% if you’re African American. Your health care professional can scan the database once they develop your Human leukocyte-associated antigens (HLA) matching through some expensive blood testing. The better the match, the least likely complications will develop like graph-vs-host disease.
Once you’ve found your match, there are still several weeks of work to do. The donor gets to pick their donation date, and your schedule will be set once that date is defined. You still have to pass a battery of tests on your heart, lungs, and a final marrow biopsy to make sure you’re ready to begin the process.
Check in at the hospital to begin with a central line insertion that will serve to draw blood from your body and insert medicines. After being treated with high-dose anticancer drugs and anti-rejection drugs (one called the Rabbit), then the patient receives the stem cells through an intravenous (IV) line just like a blood transfusion. This part of the transplant takes 1 to 5 hours. All measurements are taken from this Day “0.” You can expect to be in the hospital for 2-3 weeks after Day 0 to ensure the engraftment has taken place and that the new cells are creating your new blood. You will continue to follow up closely with your doctor for up to 100 days after the transplant to verify and correct any blood levels.
If you can make it one year without a relapse your chances are 55% it will never come back. At two years, it’s 70%, and at three years, it’s 80+%. But suffering a relapse before those time markers typically spell a negative prognosis.
The entire process is only possible based on the large registries that are helping to match up potential donors to those in need. In the U.S., Bethematch.org has all the information for people looking to donate marrow. It’s only a cheek swab to get into the registry with only about a 1 in 500 chance that you’ll match with someone who needs your marrow. People 18-44 are most desirable.