Immunotherapy, radiation, regular life - oh my!

Whoa! Long overdue update coming in hot!

Let’s start with the nitty gritty.

Expanders
My expanders have been filled to about the size I expect for reconstruction. What are those for again and why do I need them if I saved my skin? After skin sparring mastectomy, the skin wants to retract close to the chest. The tissue expanders save the breast pocket between mastectomy and reconstruction. Additionally, Radiation makes the skin tighten and contract so you want the expanders in place and filled to about the size you want before Radiation starts.

The expanders are stiff, and don’t really move well. Where my chest turns, they both follow. Regardless, it’s nice to have any kind of breast at the moment. Sleeping with them is just okay - but I can finally sleep on my side comfortably and damn, that’s nice.

Immunotherapy
I had my second immunotherapy infusion and that was easy and uneventful. I still have a lot of anxiety about the potential side effects - like permanent hypothyroidism - but I’m trying my best to put that out of my mind for now. I have blood work done before every infusion where they are keeping a close eye on my thyroid function so, I will continue to hope for the best.

Radiation
And what about Radiation?! Feels like I’ve been anticipating radiation for a long time now. I first met with the Radiation folks somewhere around my 2nd chemotherapy infusion - in hindsight, probably way too early in the process. Then I got mixed signals from different members of my care team about whether or not I would need Radiation. Overall, I was left with the impression that I would likely have it because they want to “throw everything at me” due to the type of cancer and my young age at diagnosis.

So, we expanded the expanders as though I would be starting radiation mapping around 9/23 and I braced myself for 5 weeks of radiation treatments and all the side effects (burn, fatigue, permanent changes to my skin tissue, etc). Not to mention having to wait 6 months from the end of radiation to proceed with reconstruction.

Come 9/23, I’m in the radiation office - gown on, ready to go. My Radiation oncologist asked me if I had spoken with my other oncologists because he was not sure Radiation was the correct recommendation based on the criteria.

Typically, radiation is recommended if one, some, or all of the following are true: 1) lymph nodes were positive for cancer; 2) tissue margins around the tumor had cancer; 3) tumor is 5cm or larger.

My stats:

1) lymph nodes negative for cancer; 2) tissue margins were widely clear of cancer; 3) my tumor was just under 3cm. 

The doctor suggested we pause while he went back and conferred with my care team. He followed up with me two days later to tell me that the concensus recommendation from the care team was NO RADIATION FOR ME! This means I can avoid the immediate and potential long term effects of radiation, my reconstruction outcomes will be better, and my timeline to get to reconstruction is a little shorter.

Reconstruction

I thought I might have to complete immunotherapy before I can get reconstruction but the plastic surgeon was already booking out into April and I’ll be done with immunotherapy by then anyways.  I scheduled my reconstruction as early as I could (April 7) and they added me to the cancellation list for March. It still feels farther away than I would prefer but it’s better than surgery in June or July/August, which would have likely been the timeline if radiation were still in play.

So yeah, 2 out of 9 immunotherapy infusions complete (next one hits 10/7), no radiation needed!!!, and planning for reconstruction. Wow, just wow.

And everything else! 

This all still feels like a fever dream and life feels a bit raw and wild right now. Between feeling better and recovering from chemo, the physical changes I’ve had to endure, continuing active treatment via immunotherapy, the emotional toll of it all and the vigilance required moving forward - all while trying to maintain relationships, work, and get back to a semblance of my social life - feels fucking nuts. 

I never want to do chemo again but it was almost a simpler time - chemo, work, home, recover. The rollercoaster of recovery is dynamic and even now I am rushing the “recovery” part because I’m literally still receiving treatment. As I come into this new phase of restoring my mental and physical self, I’ll still need grace and patience from myself and the world around me. As much as I want to fully jump back into all facets of my life - being more present with people and hobbies, increasing my physical activity, being all the things I want to be for my family, friends, and community - the truth is there is a fragility that surfaces once you begin to exit survival mode. Survival mode is focused, determined, with a clear objectives. You know what must be done and where you are headed. Recovery is like being a newborn baby - it’s a time of reflection on what the f*ck you just survived through and how terrible the journey really was, even while making the best of it. It’s a time of grief, self discovery, growth. It’s non linear - up and down, angsty and joyous. Feels like the brave unknown but, I’m here for the adventure.

Technically, the cancer is gone and even though it could come back with a vengeance one day (or not), the pervading emotion is pride. Pride that I can move through the darkest corners of a room, and find the light.

I hope in the coming months to personally share my gratitude with so many of you that held us in your hearts, sent love notes and care packages, showed up for visits, and all of the monumental support from so many people. It’s important to me that you know it was all important and hugely impactful. The love everyone has shared has been a profound experience. Thank you and love you right back! 

Talk soon,

V