Welcome to my CaringBridge website. I've created it to keep friends and family updated. Get started by reading the part of the site titled " My Story". It is a retrospective account of my medical journey. I hope to use the journal in the future for real time communication.
Visit whenever you can to read the latest journal entries, visit the photo gallery, and write me a note in my guestbook. Also it is a great place to send me any advice you might have!
My experience started with a sudden, inexplicable knifing pain in my side while working in my office that led to a car chase paced trip to St. Joes ER. This was January 8, 2008. The shock of the pain and its quickly accelerating level was traumatic but only the first of many electrifying hits to my brain/body system. Within 24 hours I had been processed by 2 hospitals and told by a specialist (to the disbelief of the ER physician) that I had a large mass on my kidney that was quickly confirmed to be renal cell carcinoma rather than the several other less lethal potential diagnoses everyone expected (i.e. kidney stones, benign cyst etc.).
By day 3 still hospitalized now at UMC I was presented with a game plan of a 10 hour surgery and a long list of potential life threatening steps during the procedure. Surgery was scheduled and I was sent home for a few days. Through an unexpected series of events I was fortunate to consult with and become a patient at MD Anderson in Houston. The surgery was performed by Dr. Chris Woods who is a renowned renal specialist. Initially I did well. However there were subsequent complications that kept me hospitalized for a month and once home I remained on IV feeding for another 3 weeks. The pathology showed that the cancer had already spread to the lymph nodes and though many were resected this placed in me a Stage IV status.
Since there is no chemo, radiation or any other treatment available I was advised that the standard of care was “watch and wait”. However I was classified as a high risk/high surveillance patient and encouraged to participate in a clinical trial - it was the only “game in town” as far as I could discern so I went for it. What is known but not understood completely about RCC is the paramount role that the immune system plays in the progression of the disease. As soon as I was marginally functioning I began researching the allopathic and complementary medicine protocols to protect the immune system.
The journey seeking potential life extending practices has taken me from Houston, Texas to Washington D.C. to Lennox, Massachusetts to Chicago, Illinois to Bolinas, California and back. Only after the study ended and my fear of being “drugless” sent to me 2nd , third and fourth opinions did I fully understand that the whole experience was really for science not for me personally and that in fact it could have been raising my risk of an even more virulent recurrence.
As of this January I have been fortunate to be in the 20% of RCC patients who survive 24 months without discernable additional metastasis.Having made this group my goal is to be in the even smaller number of patients who are alive 5 years after diagnosis.
I am hopeful science can discover a cure or longer term management alchemy in time for me.