Oligo Woe Is Me

My proton space helmet is built.  The locator implants are secure within the walls of my skull.  The chemotherapy drugs are en-route to Mass General to meet me upon my arrival.  A place to stay for the six weeks has been secured.  And there’s a Whole Foods around the corner. 

While this will be no “vacation”, it will be the first time in nearly eight years that Kasey and I will be spending time with just us.  And while we already miss the kids, we realize that the one-on-one time together is something to be cherished and spent wisely.  But what “wisely” really means, we simply don’t really know.  I think if we just sat together quietly chatting the time away is wise.  And walking on the treadmills together.  And being in the same room while we silently meditate or read books is wise.  It will certainly be a peculiar experience having never been apart from our children, aside for a handful of overnights, during nearly eight years since we brought our first offspring into this world.

With our lodging’s close proximity to the hospital, I am hoping to take advantage of some of the cancer-related programs during my stay.  I understand there is a Tai-Chi movement training and class that might be right up my alley.  Even though all the other contestants on Survivor thought Coach was a nutbag for his daily graceful(ish) movement cha-cha on the sandy beach, I envied his ability to just do it like nobody was watching.  And after my new life here is coming up to speed, really…what do I care if some folks think I’m having some sort of hallucinogenic episode?

I saw a footer at the bottom of a forum post today that many people have probably seen before.  But I had not.  It immediately struck me as another addition on how to live.

“Character is doing the right thing even when nobody is watching.”

Sleep tight friends.

~R

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...