Yesterday I promised to write more about a myeloma survivor that I met in California last Thursday, Brian Helstien.
Let’s skip the intro and have Brian share his story with you in his own words:
OK. February has been an interesting month in my life. Thirty years ago this month, I raced my first Ironman Triathlon. Nine years to the day later, my son, Ian was born. A year ago today, last February 23rd, I received the diagnosis that I had cancer (Multiple Myeloma, a bone marrow cancer). Myeloma de-calcifies bones (which can cause fractures, anemia and renal failure). Treatment seriously compromises ones immune system.
I have been a runner since about age 12 (indeed, I ran each and every day from March 2004 through December 2009). I saw the doctors because I was getting winded beginning my daily runs which is how we discovered this (the anemia).
Last March, I began chemotherapy which was a cocktail of three drugs. Chemotherapy is tailored these days to specific cancer type and affects each individual differently. In my case, the side-effects were mild and are/were peripheral neuropathy (nerve damage in the fingers and toes and as I write this, a number of toes feel either numb or as if they are burning).
By mid-July, the various tests all showed positive results, without technically placing me in remission (now called a “stringent complete response” to treatment) and we began planning for a stem cell bone marrow transplant. This “transplant” is accomplished by taking drugs that forced my bone marrow to produce stem cells, harvesting those and then administering a massive dose of a cancer killer, which then also killed most of my bone marrow. After that, they re-infused the harvested stem cells, to re-grow the bone marrow. That was at City of Hope, here in California, on October 10th last year.
While admitted to the hospital, I walked a marathon (26.2 miles of laps) on the hospital floor and was discharged on October 25th. I went for a run–not far, nor fast–on October 27th. By the last week of November, I was again running every day (and have run every day since November 23rd). By the way, running builds up bone calcium, and my distances are up and time per mile is coming down.
I am currently in a clinical trial which is composed of another round of chemotherapy (although with one different drug this time). Besides the neuropathy, the side effects of two of the drugs can consist of a rash (which I’ve got), and either constipation or diarrhea. Of course, if one drug gives me constipation and the other diarrhea how will I know?
Mary and the kids were initially devastated by the news. Of course, that meant that I could do some really good parenting (i.e., “don’t think you’ve got forever to get around to …”) and they’ve listened. I couldn’t have made it through all of this without Mary.
My youngest, our daughter Dylan is seventeen and a junior in high school. My “bucket list” at this point is relatively short. I’ve promised her that I’ll walk her down the aisle and dance at her wedding (and as of now, I don’t dance). And she has been told that she can’t get married until she has a Bachelors and a Masters!
This is not a road that I would have chosen for myself. However, I have met so many wonderful people, doctors, nurses, members of the Myeloma support group that I would not have otherwise known.
I’ve learned much about this disease and about myself. Prognosis at this point is…, well let’s just call it chronic, like diabetes. It’ll probably kill me in the long run, but not yet, not now, and not soon. It has been without doubt a twisting, fascinating year.
I had hoped that Brian would have shared more about how he “walked a marathon” while he was an inpatient at City of Hope. I tried to walk as much as I could on my BMT floor last summer, but I’m sure I didn’t cover anywhere near that distance.
Look. I understand how stories like this about how relatively young, otherwise healthy patients “breeze through” the transplant process.
But I have met Brian. He isn’t so young (Sorry, Brian!) And he is such a small, unassuming guy, you wouldn’t know that he had been such an accomplished runner simply by looking at him.
Thanks for taking the time to write about your myeloma experience Brian! And readers, please remember that I would love to share your story here on Multiple Myeloma Blog.com. You don’t need to have run or biked around the world!
My admiration for Brian isn’t about the distance he walked or ran. It’s about his refusal to allow multiple myeloma to change or control his life! The walking and running is simply the way he expresses his determination and defiance.
So I invite patients and caregivers to email me their stories anytime. Keep the medical details limited. Instead, focus the goals you set–and challenges met–after your diagnosis, relapse or transplant.
Sometimes simply getting up out of bed can be more difficult–and mean more–than biking cross-country.
Overcoming obstacles–big or small–is inspiring!
And don’t forget that there is still time to email me your tips and tales about staying positive in the face of adversity.
YOU ALL INSPIRE ME! Thank you for that.
Feel good and keep smiling- Pat