You have a matched unrelated donor through Be The Match! and…

…what does that feel like?

When you have AML (acute myeloid leukemia), as in my case,  one recommendation by hematologist-oncologist doctors is an overhaul of your bone marrow, a.k.a stem cell transplant, which essentially means a completely new immune system.

In stem cell transplants, donors are needed to supply stem cells to recipients/patients with blood cancers or blood disorders. My first AML diagnosis was in 2016 and one of my older brothers was my donor…he was a 100% match related donor. When I relapsed 5.5 years later in October 2021, this time my doctor chose to seek a donor through Be The Match. Perhaps it’s because of the moderate level of side effects called graft versus host disease I had after the first stem cell transplant. Yes, this will be my 2nd stem cell transplant to treat relapsed leukemia (aml)!

When your donor is a family member, you are grateful and thankful to that person for saving your life. If you are the family member who is the match, it is expected you will do the right thing – right? This unspoken expectation comes from other family members as well as the recipient. Because without a stem cell transplant, the outcome is eventual death.

But what if there are no matches within the family or your doctor believes the best donor is through Be The Match?  Is the feeling of being grateful and thankful the same if your donor is unrelated to you…a complete stranger? My answer is ‘Yes” but 99% more amplified.

Let me tell you my experience when learning of my matched unrelated donor story…I was at the BMT (blood and marrow transplant) clinic getting blood work and transfusions when my transplant coordinator visited to go over the transplant process and to hand me, “The Patient Guide to Allogeneic Transplantation.” As she was reviewing The Patient Guide, she said, “Oh, you have a matched unrelated donor through Be The Match.” I was unable to say a word…there are no words to describe the intense emotions I was feeling at the time. Instead, tears welled up and I started weeping. The transplant coordinator asked if the patient information was overwhelming, and I replied I was overcome with emotion that a complete stranger, someone I never met, would willingly go through medical testing and procedures required in donating stem cells. What kind of person does that? Do they have a special kindness or generosity gene that the rest of humanity lacks? Or were they raised by parents who taught them to look beyond themselves? In our current selfish self-absorbed society, I am truly grateful for these persons who look beyond their individual realities and make a real difference to so many of us who would die without their life-saving gift.

So, the feeling is not the same when your donor is an anonymous donor versus a family member. The feeling of gratitude is much, much greater when the donor is a stranger because there are no expectations…they live their lives through action and deliberate acts of generosity.

What Now…Return To Art??

June 28, 2021 will be my 5 year milestone in recovering from acute myeloid leukemia (AML) and stem cell transplant. This transitional period has been hard with many twists and turns, all totally unexpected on my body and psyche. For the first time, my life revolved around the medical system as a patient rather than as health care professional, and it is quite an eye opener. During this 5 year stretch, my focus has been on recovery, i.e., managing the many complications from a new immune system transplant. Before leukemia and stem cell transplant, I didn’t understand the amount of energy (physical, mental, emotional), it takes to manage chronic conditions. I get it now…managing chronic disease states is hard work and it must be done on a daily basis.

That was than, this is now.

So how does one return to the practice of creating art? The last I painted anything was 2011. And shortly after that, I went back into health care, working in clinical analytics, quality improvement, research, and program development. The past 5 years were a whirlwind of medical activity and learning how strong and resilient humans are.

I am not sure why I am starting this blog but am compelled so let’s see what the universe brings and shows me.

The words below are by Paul Coelho, and perfectly sum up my understanding of life.

I asked for strength…and God gave me difficulties to make me strong.

I asked for wisdom…and God gave me problems to solve.

I asked for prosperity…and God gave me brain and brawn to work.

I asked for courage…and God gave me danger to overcome.

I asked for love…and God gave me troubled people to help.

I asked for favours…and God gave me opportunities.

I received nothing I wanted…but I received everything I needed.

–Paul Coelho