Oligo Woe Is Me

We want to again extend our sincere “thank you” to everyone who has lent a hand with anything and everything that our friends and family have done to help out. From keeping our driveway clear to contributing home made meals when we needed them most, to gift cards for groceries, and filling the support fund bucket with contributions to assist with medical and travel expenses.

All of you have made, and continue to make, a signficant difference in our lives. We feel very lucky to have family and friends like you.

With sincere gratitude and love,
Rob and Kasey and Cooper and Sadie

Yesterday was a very, very big day. Eight back to back appointments and procedures and an outpatient surgery, and I am now all fit up to begin my proton radiation therapy starting Monday, February 7th through March 18th. Along with this will be daily chemotherapy for the same duration.

My futuristic proton space helmet was custom constructed and built. This consisted of a building a mouthpiece that holds onto my front teeth as a fixed anchor, and a custom molded pad that perfectly fits the back of my noggin. Then a bunch of super-velcro straps and fittings hold a “halo” around my head that positions me into the proton accelerator.

The next fun was the micro surgery where I had three stainless steel ball bearings implanted in strategic locations just under the surface of my skull. Fun stuff. Nothing like the sound of a drill bit cutting a depression in one’s skull bone. And then they jam a tiny stainless ball bearing into the slightly smaller hole. These are markers that are used for the precise lining up of the proton beams. So this morning I woke with my normal daily headache with three extra screaming headaches as icing on my cake.

The good news is that decisions are made. No more unknowns for treatment. No more multiple forks in the decision tree. I cannot tell you how good it feels to have the treatment plan etched in bone. 😉

Next step is getting moved into temporary housing in Boston next Sunday. I’ve been very fortunate to find a comfortable short term extended stay right across the street from the hospital. Being so close will surely encourage participating in the various programs and groups available at Mass General’s very nice cancer resource center.

So it is now GAME ON!!!!!!!!

Took my protein pills and put my helmet on...

Subject says it all. Based on the rare circumstances of my particular diagnoses, and what provides the best chances for longevity and quality of life during my time, the Blue Cross Blue Shield appeals board has authorized proton radiation treatment as an exception to the standards in my case.

Next stop…Six weeks in Boston.

Stay tuned…