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I never thought that being born with a rare condition, Spina Bifida-Myelomeningocele, would also lead me to a diagnosis of bladder cancer at the age of 44. I was diagnosed with Urothelial Carcinoma of the bladder with Squamous Cell Differentiation. My cancer is:
- Advanced (Stage 3)
- High grade (Vs. Low Grade)
- Metastatic (Travels / Returns)
- Muscle Invasive (Vs. Non Muscle Invasive)
The Oncologist said the cancer is from chronic inflammation of the bladder, which is caused by a few different things, one being my lifelong chronic bladder infections from my Spina Bifida. So, how did this cancer thing all start? Thanks for asking!
In September 2024 - The pursuit of a diagnosis for my “pelvic pressure” began. I saw my regular Gynecologist twice, 2 Gastroenterologists, a Gynecological Oncologist, a Nephrologist Oncologist, and a Genitourinary Medical Oncologist, and I had multiple exams and tests.
In October 2024 - A suspicious mass was found in my bladder through a MRI, and I finally ended up at Memorial Sloan Kettering Cancer Center to meet my new Surgical Oncologist for Urology.
November 18th 2024 (My 1 Year Wedding Anniversary) - Cancer cells were reported in my urine.
November 22nd 2024 - The cancer tumor was removed from the bladder during surgery. But, because it is muscle invasive, there is a portion that was left within the bladder wall.
November 29th (Black Friday) 2024 - The surgical pathology report came back showing stage 2/3 Bladder cancer - aggressive and muscle-invasive
December 6th 2024 - My Surgical Oncologist confirmed the diagnosis.
December 13th (Friday the 13th) 2024 - I received confirmation the cancer would be removed through removal of my bladder.
January 22nd 2025 - My open surgery was a Radical Cystectomy/Urostomy which removed my cancer to create an Ileal conduit, which is: a permanent hole (stoma) in my abdomen with a permanent bag OUTSIDE of my body that attaches to the stoma. They cut my small intestine to build the new pathway for the urine and stoma.
They removed my:
- Bladder
- Urethtra
- Appendix
- One ovary
- Both fallopian tubes
- Lymph nodes
- And the mesh around my ureters
... Surgery was 8.5 hours.
... No food = 12 days
... Heart rate = 145
... Hospital stay = 11 days
... Home recovery = 3-4 months
I've incorporated Integrative Medicine to help keep the cancer from coming back. I have already overhauled my diet (which was pretty healthy to begin with), increased my water and tea consumption, included more supplements, created a Tai Chi/stretching schedule and infused affirmations, laughter, classical music and daily injections of joy into my life.
Chemotherapy seems next to follow because although the cancer was removed during surgery, it still spread to one lymph node. Lymph nodes are the messengers to the rest of the body and make bladder cancer easier to spread to the liver, bones, brain, etc. So, according to my Oncologist at Memorial Sloan Kettering Cancer Center, the gold standard protocol in this situation is Adjuvant Therapy - "Treatment given even if all visible cancer is removed during surgery because there still may be some remaining in the body that can't be seen." -Mayo Clinic
We will be pulling out all the stops physically, mentally & financially. I don't have time to waste! We must act quickly and use every arsenal possible. This means I will not be returning to work for awhile to make my healing my full-time job and I had already reduced my workload in 2023 when this all began. Therefore, any additional support you can provide is MOST appreciated! I love you all and thank you for joining me on this topsy-turvy journey - you mean the world to me!
Upward and onward we go!
Organizer

Mary D
Organizer
New York, NY