GREY MATTER LIFE

Everything changes with a cancer diagnosis. Everything.

In the fight to survive you submit to a new life with days spent bouncing between specialists, oncologists, labs and embracing the intimate relationship you’ve formed with your local pharmacist. You follow protocols, treatment plans, medication regimes and do your best to accept the small and enormous life changes with grace and humor.

Or at least that it what I have attempted to do thus far.

Cancer is a bitch of a tornado and she doesn’t really give a shit how much she upends or the disaster she leaves behind.

Chaos and change doesn’t discriminate and everyone in our family has been affected and we’ve each uniquely responded. Everything changes with cancer and your ability to adapt and become flexible becomes critically important in order to endure the storm. There is no manual or road map so we have become dependent on teachers, coaches, administrators and therapists to help guide us on a near daily basis. All of our independence has been challenged and we still have over a year ahead of treatment to navigate.

December 5th I will begin Proton Therapy and oral chemotherapy. I’ve signed piles of consent forms and spent hours with nurses and physicians reviewing pages of side effects. What is known is that the Proton Therapy will cause significant exhaustion which will become significant around week three and peak at completion at week six. However I was less that thrilled to learn that the exhaustion can persist for 6 to 12 months. Then there are the radiation burns I can expect to have on my scalp which have been described as a bad sunburn and the patching hair loss that can range from minimal to significant – no guarantees folks. Oral chemotherapy is a shit-show of its own. Nausea, vomiting, fatigue, compromised immunity, and a slew of other things I may or may not experience.

I will have to take the Oral Chemotherapy an hour before the Proton Therapy, but I cannot eat two hours before taking the Chemotherapy or for two hours after. Not that I have wanted to eat much anyway, it is just another example of how cancer changes everything and how little control you have in the process.

So that is where I found myself yesterday. Processing the reality of my treatment protocol against what I could control on my own terms. The best way to manage treating my skin and hair loss was to simply get rid of it all. So I did.

I called a family meeting, and explained very simply what we already knew. Cancer doesn’t give us many opportunities to take control on our own terms and right now an opportunity to grab the reigns and take control had presented itself. Facing the humbling reality of hair loss on an unpredictable timeline, treating skin burns with an ointment I’d likely never be able to wash out felt like a ridiculous ordeal I had little interest in dealing with. So, I told everyone that I wanted to deal with it on my terms and shave my head. There would be no funky spotty hair loss to face and treating my skin would be easy and accessible. I had control over something very small and it felt very empowering.

We shaved my head as a family last night.

Each kiddo took turns with the clippers and then Paul finished the job. There were no tears, it wasn’t sad. It was fun and we laughed and we embraced a dramatic change as if it was an ordinary event. Because cancer changes everything and the reality is that it is just hair. Hair will grow back, my earring and scarf game is strong and I am not ashamed to rock my bad ass scar.

Years ago I wrote that “Worrying about what you cannot control is an epic waste of time.” Let’s be honest, my hair is a really stupid thing to worry about. When cancer changes everything perspective becomes your everything.