I have tried to write this post several times and am overcome with emotion as well as the inadequacy of words to explain how I feel. Should I admit that as a professional communicator and writer? I’m nothing if not honest.
I am 15 days post transplant. I came home at day +12 which according to my medical team is unheard of even for MS patients. So much has happened. So much was experienced. I have all the feels and quite frankly am solidly in the laugh/cry stage. I could go either way at any moment.
I was put through the ringer
BEAM is a high-dose chemotherapy treatment. It is given over the week before a stem cell transplant and destroys your existing stem cells. You need stem cells to make healthy blood cells which is where the previously harvested cells get transplanted back in. BEAM is the name of a combination of chemotherapy drugs that includes:
- B – Carmustine (BCNU)
- E – Etoposide
- A – Cytarabine (Ara-C, cytosine arabinoside)
- M – Melphalan
Each chemotherapy brings its own set of side effects and targets different body organs and systems. One causes mouth sores, another hair loss. I shan’t bore you with the litany of awful things these drugs do.
My life consisted of three weeks in the hospital, extensive chemotherapy, transplant, blood pressure of 70/30, stopping breathing, turning gray, vomit, diarrhea, paralysis, illness and a slow and arduous recovery.
I emerge on the other side unable to convey the gravity of my experience.
Here’s what I know
I would do it again — it was worth it. Even knowing I have a year-long recovery ahead of me that will be filled with ups and downs. My five-year-old niece has a more advanced immune system than I do, heck my 3-year-old nephew does too!
This procedure provides hope. I had the opportunity to have my stem cells blessed prior to transplant. While I’m not overly religious, I said yes. The chaplain said the most beautiful prayer and we all gathered — nurses, PCNAs, my sister, Maggie and my stuffed animal replica of my dog; party hats on, music blaring. My dear friend, Marcella created this beautiful reel on Instagram capturing the stem cell transplant.
My sister, Nicole and my best friend, Maggie are angels on this earth. Their unwavering and unending support is humbling. They got me through this.
The care at Cleveland Clinic is unparalleled. I’m in awe of individuals who choose nursing and health care as a profession and take care of people at their most vulnerable. I felt safe. If something went wrong, I knew… really knew, that they had me. The team is beyond reproach and I’m grateful for food service, cleaners, nurses, NPs and everyone who contributed to my care.
A note on hope
For nine years I’ve been told I’m sick, I have MS, I will get worse. I waited, despondently so, for that to happen and it came to fruition. I was in a dark and twisty place consumed by thoughts of illness and decline. I was resigned to further disease progression and couldn’t picture my future — travel, daily life, work — you name it.
I’m now dumbstruck at the sheer joy I feel. The narrative shifted from illness to health, from inevitability to possibility. Science hasn’t yet figured out the clinical criteria for this treatment and MS, but they’re working on it. I’m truly fortunate to have had access to this life-altering treatment. And I will chat with, text and assist anyone following in my footsteps.
The prescription was for a new immune system, which I got, but more than that it is for hope and possibility. I’m bursting with all my plans and what if’s for the first time in nine years and overcome with gratitude for my village and this opportunity.
One response to “I’m Home”
Thank you for sharing your journey.
My sister Sharon will soon follow a similar procedure.