PATIENTS IN ACTION
ASH IMF Reception 2014
“Journey of a Thousand Steps.”
My life has been one of journeys.
From Ethiopia to the United States, when I was a young man.
And back again, in recent years, to the source of the Blue Nile.
From student to professional. Single man to husband.
From stressed out grad-school student, worried about grades, to stressed out grad-school student, worried about myeloma.
You see, I was diagnosed with myeloma, a so-called disease of the elderly, when I was 25. It wasn’t smoldering. It was full-blown stage 3 myeloma.
That was in 1995. Luckily for me, the IMF was already around. IMF is also part of my myeloma journey, not only because I consider it as my family, but because in some ways I took my first formative step when I said, “No,” to Dr. Durie.
That was the moment I took charge of my myeloma destiny.
But back then, I hadn’t heard of Dr. Durie. I knew nothing about myeloma. I just had cough that wouldn’t go away. My wife insisted I go to the doctor. Turns out, I was also severely anemic, although I felt perfectly fine. They sent me to an internist and then a hematologist. And within a span of a week I had myeloma. A cancer. Incurable with a life expectancy of 3-5 years. We never did figure out why I was coughing, but that cough—and my wife’s insistence—saved my life.
I had just finished my undergraduate studies in May and started graduate work that fall. I found out I had myeloma in October of that first year. I didn’t have time to stop for chemo! In those days, before all the newer drugs, the treatments were time consuming and harsh. VAD. CVAD. Cytoxan. Cisplatin. But I never missed a day of class because of cancer. I had a big grey rolling bag I used to lug around my chemotherapy. I would sit in the back of the class, hooked up to chemo, while the professor lectured. I was with fire to learn my field, to start my career. I didn’t uproot myself from Ethiopia to be stopped by Cancer.
But my sister-in-law (where would I be without the women in that family?) thought I needed a support group. I didn’t want to go to a meeting with a bunch of cry-babies whining about their cancer. I was the guy who carried his chemo to school rather than miss a class! I challenged her to find me a group as motivated as I was. Otherwise, I wasn’t going. And she found the North Texas Myeloma Support Group.
I walked into that first meeting in November of 1996, and found out how much I didn’t know about myeloma. On top of it, many of the people there had advanced degrees, were physicians, chemists, small business owners and leaders of organizations. They were engaging. And nobody cried. I felt like I belonged. In fact, the group was new itself. Our founder, Peter Tischler, had recently come back from an IMF Patient and Family Seminar in San Francisco. I was at the third-ever meeting of the support group. Since then, I’ve missed less than a handful of meetings. Which brings me back to Dr. Durie.
I went to him for a consult. It was1999. I had harvested my stem cells, but was taking a treatment break.
He encouraged me to do a transplant. But I’d already learned from support group that I needed to take an active part in my treatment decisions, that I should have a voice in my regimen. And I didn’t want to do a transplant. I was just getting started in my career. I wasn’t even 30 yet. These were the years to build up my profession. I couldn’t afford to have them sidelined by a transplant. I didn’t want to have them sidelined by a transplant.
So, I told him: I was doing well without a transplant. My levels were undetectable. I wanted to find a way to continue doing well without a transplant.
And Dr. Durie, being Dr. Durie, listened to me. He treated me as a whole person, not just a myeloma specimen. He helped me devise multi-step treatment plan and a treatment philosophy. So we stayed the course. I didn’t have a transplant.
But by 2001, my levels began to creep back up again. But, by then, there were new treatment options.
I went on Thalomid for five years.
Then I switched back to one of the “old dogs,” Cytoxan, before moving to Revlimid.
But in 2013 I started on Velcade. Sub Q. It was very effective for me right away. By the fourth dose, my myeloma levels were undetectable and unmeasurable. But what I liked about Velcade is that it didn’t interfere with my work schedule. I could get into the doctor’s office for treatment and be at work by 9. I could even work it around my travel schedule.
Currently, I’m on Revlimid as a maintenance therapy. But I am strongly considering returning to Velcade, initially with a full dose of treatment, then as maintenance. My next step is to look into my arsenal and choose the least toxic, most convenient and most effective drug for me thus far. Re-treatment with Velcade.
My IMF family has taught me to know my options, to be on the Board of Directors of my treatment team. It gave me the informational, technical and human resources to continually hone my myeloma knowledge. I became addicted to support group meetings. So much so that when we lost Peter, in February of 2010, I stepped up as a full-time Support Group Leader, to carry on sharing the hope..
In fact, the IMF just recognized our support group’s18th year in August at the Support Group Leader’s summit. And we are now up to over 250 members.
Which brings me back to the Nile. During these years, I started traveling back to my homeland, which I’d left for the world of education and work and technology. Which I left before cancer. I can now go back, because of the journey the entire myeloma community has taken.
I go back to Ethiopia to see my family. I go to connect with my origins. And I go to visit the source of the Blue Nile, which originates in Ethiopia, near a lake called Tana. When I go there, I leave all my technology behind—everything that beeps or lights up—except my camera. I go to visit her genesis. Some say it’s a Holy region. Some say it’s in the book of Genesis. But when I am there, I travel the path of ancient history to the source of the waters that nourish Africa, which bore the seeds of Man.
This is where we all came from, originally. And this is where, many millions of years later, I came from. If I didn’t have this perspective, I might be overwhelmed. But I see, that in the ever-flowing scheme of things, my problem is small. I’ve learned that life is both finite and brittle. But the hope I have today is not groundless. It’s based on information.
Like the Nile, my journey to integrate myeloma into my life has made me the person I am today. It has carried me through all those peaks and valleys, all those meetings and seminars, to this place, this moment, this community. And also like the Nile, it will flow on.