Today—April 8, 2017—marks two years since I had my allogeneic stem cell transplant. An allo transplant basically means the stem cells I received were from an unrelated donor (read about the day of my transplant here).
I can’t believe it’s already been two years. I remember that day I looked on Facebook and saw so many of my friends, family, and people who didn’t really know me, show their support by posting photos of me sporting’ their #teamcass shirts or wearing orange (leukemia’s cancer ribbon color).
I was overwhelmed by how many people were so involved and thinking of me that day. It was a day I’ll never forget because of that.
I didn’t know then if the transplant would work or if my body would reject it completely. I wasn’t sure this had “cured” my cancer and that it’d never come back. The type of mutation I had in my body (FLT3) is known to be very aggressive and known to come back very quickly within two years—lowering my chance of survival.
Now, I’m sitting here typing—where I happen to be in a hospital bed—battling pneumonia and GVHD. Although I’m grateful the stem cell transplant worked, I never could have foreseen the type of complications I’d endure in the future.
The transplant and my donor definitely saved my life—there is no doubt about that. I think now if she wants to, we can exchange information, email, send gifts, and even visit in person if we’d like. I hope she is willing because I wonder ever day who she is, what she is like, where she lives, etc. And I would love to thank her in real life.
Around the oncology floor, staff, and clinics they call it our “transplant birthday.”
I remember after my stem cell transplant was complete I was sitting in my room with my friend Lauren and Klay. Lauren and I were Facetiming her mom back in Massachusetts, and in walked all of the nurses with a cake and sang “Happy birthday” to me. It was a song/day some never got the opportunity to experience, which is completely heartbreaking.
When I think about this disease—not just acute myeloid leukemia—but any type of cancer, I think about how we should really contribute to causes that need it. And not just wait until one of our family members is effected or friend of the family’s, etc.
We need to get ahead in the way we think. We need to start being proactive in life, instead of reactive. Don’t hate until this happens to someone you know or love; start making a difference today, April 8, my stem cell transplant birthday.
I never got to mention or celebrate this, this week. But it was Young Adult Cancer Awareness Week this week. I should have been promoting my fundraising efforts for the nonprofit that supports young adults while they battle cancer and all the baggage it comes with called Stupid Cancer. It’s a great organization that hosts CancerCon which brings young adult cancer patients, caregivers, doctors and medical staff to this one giant conference where people meet, learn, teach, and find ways to better their lives after cancer.
But when I decided that this year I wanted to go to CancerCon and I wanted to do some good by fundraising for it, I spoke to their Director of Development, Sean, about how to get started. We chatted about the best approaches, told stories, and got to know each other a bit over the phone. The other day, Klay brought me an envelope with the name Stupid Cancer at the top—noting the sender. I opened the envelope the black card that lay inside. It was a note written by Sean.
Sean said he and the staff at Stupid Cancer had seen my Facebook updates lately (the ones about photopheresis, GVHD problems, and the SVC issue) and the team wanted me to know that they were thinking of me. Tears just poured down my face, by the end of his note. It was nothing that was written in a spectacular way, it was just the fact that they cared enough to send anything at all. These people haven’t even met me in person. They live in New York and even though I am fundraising for them, that wasn’t the reason they mailed a handwritten card. They genuinely care about people.
And that’s what makes this organization so different from others; it’s not about the money—yes, it helps because it allows them to do what they do—but it’s because the people involved in this organization are raw and real and tell the ugly part of the truth that we don’t want to hear.
I think THAT is so important.
So if you’re feeling the need to do something today—make it this—donate to my page with Stupid Cancer (only a few days left to donate) and sign up for Bethematch.org, where you get on the registry and save someone’s life like someone saved mine two years ago. This is so important. I saw two different stories today on Facebook begging people to share and sign up for the Be The Match bone marrow and stem cell transplant registry. It’s easy! You sign up, they mail you a kit for your DNA, and you mail it back. Pretty simple!
And if you’re reading this and just had a transplant, experiencing GVHD, or waiting to find a donor, just know that my life may suck a bit right now, but there isn’t a day that goes by that I’m not thankful to have received those stem cells which has kicked my leukemia to curb.
Life changes. Things will be different after transplant. Some days are great and some, not-so-great.
But your eyes are open now and will see things in a different way from here on out. Use that to learn, grow, and better yourself, your friends, your family and ultimately the world we live in.
And I’m always here to talk if you need anything. I think my hospital just told me they made a room for me to just live here now…move in because I’m either never here or always here. Either way, my toes are on the ground and air is in my lungs (even though there is gross stuff in my lungs right now cause I have pneumonia), so I’m here, breathing (and coughing) cough, cough.
But I am here, after two whole years, I’m still here,