$1,225.00

I am proud and so excited to participate as a cancer survivor in the Wilmot Warrior Weekend on September 29 – October 1st, 2023, in Rochester, NY. Wilmot Warrior Weekend is more than just a first-class cycling, walk, and running event – it’s a celebration and movement fueled to create new life saving treatments and cures for cancer patients in New York and around the world. This is Wilmot's FIRST cycling event! Whoot who!! 

 All fundraising will advance world class cancer research and survivorship programs at the Wilmot Cancer Institute and the University of Rochester. Please consider supporting my efforts by donating to my fundraiser and let’s leave cancer in the dust! 

If you would like to donate - don’t forget to add “in honor of..” or “in memory of..” 

Come back to see my updates below!

Thank you!!! 

Love, 

Shannon

 #WilmotWarrior

Why I ride…

I loved to bike and had done MS rides back in the 1990's…got married in ‘93 and continued to bike with my first daughter who loved to ride in baby seat.. then I was chasing her on her bike while pushing her sister in a stroller;-)

10/6/06 - My first appt at Wilmot Cancer Center - you do not forget the first step into Wilmot - at that time the old gray dreary Wilmot…2nd floor to the left?  my legs did not want to move past the parking garage floor…

10/31/06 - dx with CLL/SLL - which is a type of Non-Hodgkins lymphoma called "Chronic Lymphocytic Leukemia/Small Lymph Lymphoma".  Long story short - my white blood count was 18 (normal is 5-11). I was exhausted and craving popsicles (pica) obnoxiously. I am sent home to "watch and wait" with blood draws monthly. I dropped down to 4 days of work and slept thru Wednesdays...crawled thru my days. Not much of a life for me, my husband and girls who were just 12 and 9…Thankfully my husband had a busy job to keep after, our families helped with the girls and my Melanie had the “go to bed mom - I’ve got this” attitude and memorized 538-2810 (pizza land) to cover what she could not. Molly (my little one) is a nurse now with that same “I’ve got this” attitude;-)

10/2008 - had just my uterus out because I needed something to stop the anemia! Whew did that make a difference after a few months. i know, TMI - but it was a great decision. Waiting for the other shoe to drop gets old fast!

11/2008 - my aunt Jane (Marion Wood) died from Pancreatic Cancer - she always had my back with a fighting Irish spirit. After watching her fight so hard against cancer and pass away I knew needed to do something!

I wish I had more room to write - but if you know me - you know most of my story from Leukemia and Lymphoma rides - raised about 21k between 2009-2012. All 100 miles in a day - 3 in beautiful Lake Tahoe, 1 in Maryland and the last in Lake George - which was a small event and I was the inspirational speaker - very nice honor! Sounds easy huh? Nope - 1,000's miles training on the bike, I was heavier than I am now (fat) and a handful for my coaches! Thank God for them carrying me (drafting me) many miles!

My donors asked where the $ from our rides went - some to Roswell and the rest to Wilmot. Ahhh a study for CLL and Neem on this list of 5 studies…Neem turned out to be a huge asset against CLL fatigue… no more bronchitis, strep, etc  Whoot who! 

From there I got a divorce - ugly times and life took many turns...One really good one was starting an indoor Spin/Pilates business in my small town called TNT Freewheeling.  I taught many classes over 2015-2019. THIS was huge for my health! My white blood continued to climb slowly but my energy was great.

2020 - Covid years...augh! I need to be around people and was lucky to have only a few weeks of remote work. I was glad to get back to work with some pretty amazing people.  Covid shots and Covid itself swelled my lymph nodes more than usual and my white blood count was not swinging back down like it would after an infection. 

2021 - strange virus that didn't last long - hit my mom and myself...and it put one of my good friends in the ICU with death at the door...I recovered after a few days home but my weight started to slide off - nice!  But the catch was - it was from the CLL progressing and feeding on my sugars...

2022 - time for treatment - no one is ever ready...but treatments have come a long way in 16 years! I wanted to do a clinical trial but Wilmot was - like all hospitals with Covid - short staffed...and my "wait and watch" was over.  After all these years - there was not time for a few more months to get into a trial - my muscles were "wasting"  with progression. 

2023 - I have been on Calquence since Aug 2022.  My white blood count was at 123.8 then shot to 269.2 with 1 month of treatment as the dieing cancer cells were being pushed out of the lymph nodes into the blood stream..My white blood count is almost normal now - and considered a remission - tho not complete remission. My lymph nodes melted away within weeks and my spleen was normal again after 8 months of treatment. Pretty impressive for a treatment - at home - two pills a day...cost is $174,000 per year - covered THANKFULLY by insurance and special pharmacy grants. This drug might work for years and in mean time even better drugs come along.  o 

So I ride for me...because I can...Most patients are too sick to bike, run or walk for their type of cancer tho I have met some along the way who have done many many more than I have! It's being part of the cure that fires me up and exercise naturally fires me up. It makes me feel better, sleep better and eat cleaner. My motivation was lacking until I heard of this event in my own area! No huge fundraising goals to meet, no traveling out of state or those costs absorbing some of the funds raised. This event is exactly what I needed to get moving again!

I also ride for many many family and friends who have had or passed from cancer.

My aunt Jane of course but most especially my Uncle Melvie Keenan and Aunt Marilyn Fisher who have Non-Hodgkin's Lymphoma. Melvie was dx in 1997 with only 6.9 years to live - he is currently prepping for a new clinical trial at Wilmot which starts in a few weeks...tough?! wow! He has taught me a lot along the way for sure! My aunt Marilyn is newer to the Wilmot family - first diagnosed with Non-Hodgkin's lymphoma and then Marginal B-Cell Lymphoma on top of that. She is tough too - and always laughing about something which keeps us young too!

We lost our cousins wife Ruthie Coyle a couple years ago to T-Cell Lymphoblastic Lymphoma...after an incredible fight! 

No whining here! CLL is easy compared to all others!