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.
hi Jen, I recently came upon your blog. Much, much respect to you and tons of full healing wishes coming your way. You and your family are in my prayers-Eleni
Once again you continue to slay this cancer beast with the most remarkable strength and most impressive spirit to have ever walked this earth. Your own coping words regarding worrying abt what one cannot control is an “epic waste of time” remain on a sticky note on my fridge from years back and guide me to this day. You my friend are who/what is epic! You’re just tremendous- you really and truly are. Xo Alex
Jen – I am a long-time friend of your Mom’s. We share the same namesake “Barbara”.
You are a courageous and beautiful young woman. Hair is just “window dressing” – and insignificant to your inner beauty and strength. Beauty comes from the “inside” NOT out! Be strong and keep pushing. Remember – After every hurricane there is a rainbow. Your rainbow is coming – You can weather this storm. Be strong.. .
My thoughts and prayers are with you and your family during this difficult time.
Barb Chism, Charlotte, NC
You are amazing, inspiring and look beautiful!
Jen you are beautiful and strong, an inspiration to me…and the world! I look to your positivity to get me through my own personal struggles, and pray for you always!
That scar looks super familiar … my son had a tumor removed from his left parietal lobe … of course it came back so he did the neo blade Followed by proton radiation with chemo…. I’m sure you know what to expect but just a heads up about 3 weeks after he finished he did have fatigue not during the treatment at all as a matter of fact his last treatment he flew to Utah to ski with family !! BUT they say radiation is the gift that keeps on giving so three weeks after we were surprised and he was so fatigued … like hard to walk across the room tired !!! That was 3 years ago ….all his hair cane back kinda thin in one small spot !! So happy your doing Proton radiation the best choice !!!
Jen, You are one strong, sexy, bald woman ! I admire your courage and strength. My cancer was a minor blip compared to the battle you have and are waging. You are made stronger by the family you have grown – and you are giving them strength to battle with you. You are also who you are because of the two who raised you – strong in each of their own unique ways. I’m an only child, my child is an only child… it is a way of growing up that gives you more than you realize when it comes to independence and courage. I’m lifting you in my prayers. Life is such a gift – and you are teaching many how to savour each and every moment we are gifted with.
Love from another Jennifer
Girl, you rock. Just that. Amazing.
so sorry for what you are going through, but I know you will fight this battle with you head high and set an amazing example for your kiddos. I love the shirts that everyone is wearing. anyway us folk in ct, can buy them. would love to support in any way we can….how can we help…
laura and Tony
I believe there is another order being done for the shirts. I can check and let you know.