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?

What's Up (Some Tough News)

Over the past couple of weeks, I have slowly been sharing my tough news with individual family members and friends. It can be exhausting, so please forgive me if this is how you are learning that I was recently diagnosed with breast cancer.

If you know me, you likely are aware that writing is my best medium for processing, so I have decided to join the blogging ranks as a way to do so and also to share information (both useful and useless, to be sure) about my breast cancer experiences. Please consider yourself warned that I will be talking about anatomy (specifically, breasts). 

If you know me, you might also be aware that I do not do "average," so naturally I would have a special kind, or subtype, of cancer that is known as "triple negative." Triple negative is deceptive in that it makes you think (if you don't know any better) that it is a good thing. "Woo-hoo! Triple! Negative! On a medical test result!" But now I know better so I can share with you, dear reader, that it is perhaps not a good thing; at best, a mixed bag.  

Before I go into further detail about my diagnosis (which I will do in my next post), I do want to assure you that a) I have excellent doctors, and b) they are very, very positive about my treatment being a success. (Quote one doc, "It won't be the Fall that you had in mind.") In fact, it has been a small ego boost to so consistently hear about how young and healthy I am. (I am working on getting them to add "fabulous" to this list.) They have also assured me that I will be able to live a mostly normal* life. My surgeon, Dr. V., gave me several examples of patients that he is treating who also have triple negative breast cancer and who are active and working. I have been told that treatment has come so far in recent years that they are able to largely eliminate much of those well-known side-effects such as nausea, fatigue, and the need to avoid crowds for fear of germs. Dr. V. shared with us that one of his patients is a working kindergarten teacher (think of that petri dish of germs!). 

As many of you are also aware, we recently moved (back) to the D.C. area. I had been working as a political consultant in Minnesota, and was deep in the process of a job search here. I have enjoyed reconnecting with old friends and colleagues all summer, a process which I put on hold initially after learning that I would have several tests to get through before we had a full picture of my health status and treatment plan. I still have many people with whom I have not had the chance to reconnect, and I hope that we can plan something soon. 

In terms of my job search, I do plan to shift course a little and to seek project/contract or part-time work rather than full-time with an organization, at least through the end of 2017. Flexible scheduling will be helpful, as I will have chemo each Friday until mid-December, when I will move to a schedule of just once every 3 weeks. I am incredibly lucky to be married to a member of a labor union and thus I have excellent health insurance benefits (I will definitely be writing more about health care in later posts). Please note that I can and must work. Medical professionals have encouraged it-- frankly it is important for mental well-being to remain an active member of society and to maintain a mostly normal life during this horribly abnormal time.

I will get through this successfully with love, humor, a mostly plant-based diet plus a ton of prescribed drugs, and with the amazing people supporting me. Thanks for being one of them. I love you. I will beat this.

*Please note that I use the word "normal" here to reference my personal normal way of living. This word is often loaded with default-laden meanings and interpretations, and I in no way am leaning into that; simply a way to describe that I will be functioning mostly or almost-nearly at my regular levels.

Selected quote:

"It won't be the Fall that you had in mind." -- Dr. H.

#whatimreading