My 50th Birthday "Party on the Peloton"!
Many of you know my family lost my Dad to his diagnosis of myelofibrosis in July 2019. Not quite as many of you know that I was also diagnosed with a myeloproliferative neoplasm in August of 2017. This year I was looking for a “pandemic-style” celebration to mark my 50th birthday on February 23. Since omicron put a damper on the bang out party I was hoping to throw, I have decided instead to hold a fundraiser to raise money to support research to help develop new treatments and ultimately a cure for patients with MPNs.
My family’s experience with MPN began in 2010 when my Dad was diagnosed with myelofibrosis. Like many patients with MPNs, his path to diagnosis was a little circuitous, starting with a surgeon noting that his “bone marrow looked funny” during his hip replacement and a perceptive internist realizing that the chronic elevated platelet count and other lab abnormalities were a sign of something amiss (and not the result of my Dad’s role as a frequent donator of blood and platelets). Despite being a physician myself, since this is a relatively rare disease, I quickly had to do a lot of learning about this diagnosis. Luckily, my Dad was blessed with a great team of doctors, even living in rural Vermont, and he received great medical care until he succumbed to the disease in July of 2019. My Dad was an incredible man, and I was incredibly lucky to be his daughter. A main goal in this fundraiser is to honor his memory. You can learn more about him here:
In Memory of My Dad, Russ Reilly
Myeloproliferative neoplasms (MPNs) are a group of progressive blood cancers in which the bone marrow typically overproduces one of the mature blood elements- such as platelets or red blood cells. The MPNs include myelofibrosis, essential thrombocythemia and polycythemia vera. Shared features of these diseases include tendencies toward blood clotting/bleeding, bone marrow scarring and a possibility of transformation to acute leukemia. The length of time prior to that progression to leukemia (which has a very poor prognosis post-transformation from an MPN as they tend to be less responsive to therapy than other forms of leukemia) can be years to decades. As a result, once diagnosed with an MPN, there is a lot of watching and waiting. Blood tests and doctor visits every few months to make sure that things are not progressing. MPNs are among those diagnoses considered “rare diseases”- roughly 1-2 people in a population of 100,000 develop these disorders in any given year. In general, MPNs are not thought to be genetic though the thinking about that may be changing. Thankfully, despite their relative rarity, there has been active research into therapies for these disorders in recent years and the MPN Research Foundation (https://www.mpnresearchfoundation.org/) has been instrumental in leading the charge.
My own experience with MPNs began in 2017 when my platelet count was high on routine labs with my annual physical. This resulted in my own MPN diagnosis following a bone marrow biopsy (side note: do not recommend!) in the summer of 2017. Thankfully, my disease has been relatively stable and other than occasional dizziness and fatigue my day-to-day symptoms remain mild. My cancer remains in the “watch and wait” stage with slightly heightened anxiety every three months when I must present for surveillance labs to monitor my disease progression.
I like to think this experience has made me a better doctor. More empathetic to patients living with chronic illness and especially those with who are “chronic cancer” sufferers or cancer survivors. It is a unique fear or anxiety that is always with you. Since my diagnosis, I have cared for several patients with MPNs, two of who have progressed to leukemia and died. I also have another patient whose daughter has an MPN. I do this fundraiser in honor of them as well.
I am also doing this fundraiser to honor and recognize all the healthcare workers who have sacrificed and given so much during this long pandemic. Especially those with underlying health conditions or household members with underlying conditions that have made them more high risk. Despite the added risk to themselves, they have continued to go to work, care for patients and do their best to keep others safe and healthy. I will ride for you too!
My personal goal for the month is to ride my Peloton each day with a goal of covering 200 miles over the course of the month. I will be riding with the hashtag- #MPNWarrior. But as I mentioned, I would like this to be a PARTY too. I am hoping that several of you will join me for a live ride the one evening the week of my birthday (sometime between Feb 20-25th). I am really hoping we can find a ride with one of my favorite Peloton instructors (Ally, Emma, or Jenn). I will post details of the ride we will be doing here and on my Facebook page once the ride schedule for that week is available. I will also hope to join a live ride on Feb 28th (Rare Disease Day).
Not a Peloton member? No problem- you can join for free for up to 60 days (https://www.onepeloton.com/digital/checkout/digital-60d ). No bike at home? No problem- using the app on your phone you can ride from any stationary bike including at the gym. You hate to bike? No problem there either! Peloton offers lots of classes (yoga, running, walking, strength training). You can still join, add the hashtag and let me know a live class you are doing that week and I will try to join you! If none of that sounds appealing to you, you can simply donate and send me a note ?
Thanks for reading and hope to see you on the leaderboard!
AKA “goodbetterrbest” (watch the video about my dad to understand the leaderboard name)
Add the #MPNwarrior tag and join me in a live ride!
2/22 - 6a EST 30 min Ally Love Tabata ride (hopefully I don’t die on the last day of 49! I avoid Tabata rides because I am scared of them!)
2/23 - 7:30am EST 30 min Ally Love Hip Hop Ride (birthday ride!)
2/24 - 5pm EST Jenn Sherman 30 min HIIT Ride
2/28 - 6:30pm EST Emma Lovewell 30 min Disney Ride
I will post details of my live rides here once the schedule is available. You can also track my progress.