Radiation: Yep, I Still Have to Do It

💥Radiation💥
Tomorrow I begin the final active treatment portion of this journey; radiation (or as the cancer community calls it, "rads"). Why do I still have to do radiation, even though I have been told that I had a complete pathological response to chemo? Great question!
Generally speaking, the cancer community is moving towards not doing radiation if you have a complete response; my medical onc said that she felt that in five years this will be the case, but it isn't quite there yet. However, I have been made aware of a meta-study that suggests that this is the case except if you a) are young ✅; b) have TNBC ✅, and; c) were Stage 3 ✅. So... yeah. Five weeks of radiation every day Monday through Friday for 15 minutes. However, my complete response to chemo did buy me one week off of radiation, and I am pretty thrilled about that (five instead of six weeks, yes I'll take it thanks!).

Also, radiation can get any microscopic asshole cancer cells that are not likely there but if they were it would get at them (I have said it before and I will say it again, cancer is a big asterisk). My radiation onc said that since so many of my lymph nodes had cancer, he is going to radiate them in additional locations such as near my collar bone and the middle of my chest. Since the area in the middle of my chest is close to my heart and therefore could cause toxicity, I will need to do breath holds during radiation. This will ensure that my heart will move lower and left, farther away from the radiation. Breath holds may sound awful, but in reality it is not a huge deal to me (thanks to years of yoga asana and pranayama).

Radiation Prep: Planning Session & Dry Run
I have four new tiny blue dot tattoos (two on each side of ribcage, one on my stomach, and one on my collarbone). These direct the machine so it will point the radiation in the right spot (it does not mean the radiation is pointed at it, as though it were a target, but instead it guides... if that makes any sense). I know these tattoos bother some people, but I don't really care much one way or the other-- even though they are literally my first tattoos. I could have chosen to forgo the one on my stomach in place of super-adhesive clear stickers that would cover blue sharpie marks for the next five weeks... but I declined. I had three of those for the past 2.5 weeks, and it was incredibly annoying (the adhesive hurt more during its removal than did the tattoo application). And the stickers also got a bit dirty. The tattoos are given/applied during what is called the Planning Session, which consists of a CT scan and a lot of pictures and an arm mold. What is an arm mold, you ask? Another great question! The technicians brought out this pillow and asked me to raise my arms and rest them on the not-pillow, which turned out to be an arm mold. The arm mold ensures that I will hold my arms in the exact same place for each radiation appointment. It is not uncomfortable (but it is also not a pillow so it could technically be more comfortable). While I am in position, I feel as though I am pretending to be a chalk outline. Or Han Solo while he is in the carbonite (okay fine his arms are not up and yes I just Googled that but I  still think it is hilarious).

Radiation appointments last 15 minutes, there are very nice therapists and technicians who talk to you (they even let you pick your own music during the appointment). The technicians speak to you from outside the room during the session, instructing on when to breathe and if you need to inhale or exhale a bit (each breath is supposed to be the same, so I appreciate that they keep track for me). The decor is very spa-like, except for the in the actual room where you are radiated... that room is very clinical looking, with a giant machine called a TrueBeam.

Cons of Radiation
I mean, ugh no one wants this s&*%.
Likely side effects are some sunburn-like effects and fatigue that usually kick in towards the end.
Then there are some even less-pleasant but also (much) less-likely side effects, such as getting other types of cancers (yes! what the actual &$#*) and such that I am going to acknowledge but not think much about. There is a concern about lung issues, so they will keep an eye on that for a few months after radiation as well.

What Else Have I Been Doing?
Some contract work, some dreaming of what I want the rest of my (our) life to be like, plotting how to get there. Some catching up with friends and loved ones. A lot of walking. I have been going to physical therapy for a post-surgery side effect called "cording," which looks (you guessed it) like cords that run from my armpit to my hand and restricting my range of motion. I see a lot of my plastic surgeon, who has been watching me a bit due to some delayed healing (they had to do what is called a "revision," and if you want to know more about that, feel free to ask me directly). I have been getting used to what I look like now, although I am told it takes six months for everything (I am talking implants here, people) to fully settle (initial decision: I like them). My hair is starting to grow back, which is great because I am very much over my wig, and it is too hot to wear beanies (I do not love how I look in scarves). I was measured for a lymphedema sleeve (compression sleeve) to wear during flights, just in case. I have been getting ready to fly home for my cousin Jennie's wedding. I have had my labs checked monthly (everything is great!) and my port flushed (need to keep it infection-free!) and an EKG and an ECHO.

So how is your spring going?

So, How Was Camp Chemo?

Dear friends & family,
My first day of Camp Chemo was pretty breezy, and while I can't say that I would have chosen this camp of my own free will, the people are pretty nice, and they give you a fairly comfortable chair to use during your stay. There is a kitchenette, a TV that was unfortunately turned on during the last hour (now I can watch my stories), and wifi. Plus the added benefit of starting treatment that will get rid of this cancer.
Thank you for all of your thoughtful texts, Snapchats, FB messages, etc. It definitely helped brighten this big day by knowing you are supporting me. 😍

My morning began very smoothly, always a plus:

• Good night's sleep ✅
• Wake up on first alarm ✅
• Shower/get ready ✅
• Light breakfast (my standard warm water with lemon, smoothie, matcha tea) ✅
• Remembered to apply lidocaine cream to Power Port location ✅
• Only slightly overpacked my backpack with comfort items, laptop, books, and magazines ✅
• Arrive on time, with five minutes to spare ✅

Since it was my first day, I was informed that it would take a little longer, so they could assess whether or not I have allergies to one of the drugs called Taxol (I do not). I met the two nurses (Sofia and Jennifer), met with Researcher S., met with the Physicians's Assistant (PA) J., and another woman whose name I cannot remember but brought me a tablet with some surveys that I needed to complete for participation in the clinical trial.
I also had some additional blood drawn for mystery reasons (also part of the clinical trial, and is just a fact of life. The nurses don't know what it is for, either), my vitals checked, and completed a biopsychosocial assessment (just a Likert scale of how I am doing in terms of well-being, quality of life, anxiety, depression, pain, etc.). I feel mostly great, in case you are wondering.

Researcher S. stopped by to ask if I had brought my anti-nausea medications, and to say that I should not try to push through feelings of nausea or pain. She added, "Not that I think that you are one of those people," which shows that she does not know me at all, or is a great psychological device for getting "those people" to agree that they will not try to push through and will in fact take those medications when the need arises.

I got to use my Power Port for the first time! We began with a saline solution, then 30 minutes of the Pembro (immunotherapy drug) OR placebo saline solution LET US ALL TAKE A MOMENT TO HOPE/PRAY/SEND GOOD VIBES THAT IT IS THE PEMBRO THANK YOU, some "pre-meds" that included Benadryl and steroids in preparation for the Taxol, which was administered in a ramping-up fashion taking a little over an hour that we will not need to do in future appointments given that I am not allergic, and capping it off with Carbo for 30 minutes and one final saline solution flush.

This is a double-blind study, so I will never know whether or not I am one of the lucky recipients. It is a 2:1 chance that I will, though, so I have some okay odds.

Three or four hours later, I am feeling mostly normal. I had a snooze with Jax, one of the kitties I live with, on my stomach (Benadryl is the culprit for fatigue here), I took the dog (Toby) for a walk in this most gorgeous fall weather, and now it is time for dinner. I am told that it may be tougher on day three or four, so we will cross that bridge when we get there.

Here is a picture of Jax and me taken a few weeks ago. He loves to snuggle. Ignore my bedhead.