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?

Emerging From the Chemo Chrysalis

BYE CHEMO
I am emerging from my chemo chrysalis! It sounds beautiful, doesn't it? -- so I am going to run with it. Several times over the course of chemotherapy I would remark to John that I wish I could just be put in a cocoon and taken out once all the infusions have been infused. And surely then I will emerge a beautiful butterfly! Or whatever. If you follow me on social media, you will also know that I do expect some super powers. I will keep you posted on how that goes (and yes, I definitely will settle for the super power of life).

Reflections on Chemo:

• Chemo is gross. 
• The first 12 infusions (Taxol/Carboplatin) were super tolerable, although annoying to have to go weekly. 
• The next 4 infusions every 3 weeks provided a bit of a reprieve for my schedule, but in reality it sucked pretty hard some days physically. It was a stronger chemo, and coupled with the Pembro (which I now believe I am getting), I had a few harder days.
• I was frustrated when it was harder than I thought it would be. Basically, I expected sucky, but just regular sucky, and a few days exceeded that and I really hated to admit it.  
• Chemo infusion days were not really bad at all, aside from some queasiness. For me and for most other survivors, the harder days are often 3-5 days after an infusion, when the premeds wear off. 
• My family, my Chemo Buddies, and entire support network truly got me through this and I cannot thank you all enough. Knowing that you are out there cheering me on propelled me through this tedious and queasy part of my life. 
• John, my hero partner in all of this, is an incredible human being. I hope you let him know that when you see him. He would often thank me for enduring chemo, and then also tell me it will not be like this forever. Both of these sentiments saved me on numerous occasions. 
• People who work in this field are a whole other breed, and they are amazing. 
• CBD oil was in fact useful for alleviating the side effects of the last couple of infusions. I highly recommend, even though it tastes disgusting. 
• Food: While I was super healthy in the beginning, I became very food-averse with the last few infusions, and lost weight too rapidly. Food literally disgusted me, especially food that I had eaten in December (chemo gets associated with it and renders it inedible). Thus, I adopted the rule that "if the head and the stomach agree, I eat it." This led to eating much more meat and pasta than I would normally, and maybe that entire 5-package of Cadbury Creme Eggs from my dad. I will get back on track as this final infusion's effects abate.

What I Look Forward to Most:

HAIR. The big hair grow-back has begun! I have a fuzzy head right now, with lightish-colored hairs. I am debating doing a final shave of these chemo-laden fuzzies. Some say it will help the healthy stuff to grow back faster; others say that it does not really matter. In the meantime, you will see me with my wig or with a soft beanie. 

I have sprouts of eyebrows. I have eyelashes (these will likely fall out again in a few weeks, but I'm happy they are here now). Thank goddess for Sephora. 

FOOD. Sushi, sprouts, raw vegetables and fruits, coffee, the occasional glass of wine, an over-easy egg. Blue cheese. Did I mention sushi.

SOCIAL LIFE. With the flu season being so bad this year, I did end up avoiding mass transit and public spaces and this severely curtailed my social life. Now that my neutrophils won't be obliterated on the regular, I can see you again! In person! 

EXERCISE. Chemo diminished my lung capacity and energy levels and increased my heart rate, so I am looking forward to building back to strong and healthy. I hope to find a run or two this fall to work toward. Exercise also has proven to diminish the rate of cancer recurrence, so it is time for me to truly commit to myself in this way.  

NORMALCY. I have some treatment left but the worst of it is mostly over, and I will be able to get more consistently back to "regular" life including with work and for us to move back into our own home. We are so lucky to have the help that we do-- family is everything, people. 

What's Next:
This is a marathon, my friends. Chemo is over, though, and believe you me, I am freaking ecstatic! So please do not feel badly for me that there are still some big things ahead for my treatment. They won't be fun, but they won't be chemo. I am upbeat and so should you be.

Surgery.
"Of course they're fake. The real ones tried to kill me!"
I will have a double mastectomy on April 11. It's an overnight event at most, and I should expect to need some help for a couple of days. They say healing is about a week or so. My mom will be here from MN for a week to help out. Thanks, Mom!
While some in my situation opt for unilateral (just one breast), given the high rate of recurrence for Triple Negative Breast Cancer in the first 3-5 years, I am happily offering up both as tribute to the cancer goddesses. Prophylactic, as they say.
Along with the obvious surgery and reconstruction that takes place, this will allow for us to get the real picture of where my cancer is/was and to re-stage it based on that information. I was originally staged at III, but was told it could be II. They will likely inject a dye before surgery so they can tell if there is still any lymph node activity-- the last they checked with an ultrasound in December showed that there were still a couple nodes showing inflammation (which means active cancer).
In the meantime, I have appointments with my breast surgeon and my plastic surgeon to discuss details and decisions, including size, shape, saline vs. silicone, expanders vs. direct-to-implant, and whether or not I would like to have nipple-sparing surgery or go with the Barbie boobs and 3-D nipple tattoo. Feel free to ask me questions directly about all of this, I truly do not mind.

Radiation. After surgery, I will need to do radiation, or "rads" as the cancer community tends to refer to it. This means that they will point radiation at the spots that had cancer as a means to further eliminate any potential cancer cell stragglers. How do they ensure they hit the same spot(s) every time? Tiny little blue tattoos. My very first tattoo ever!
This will be done every weekday for about 5 or 6 weeks, for about 10 minutes at each appointment. While not everyone needs radiation, I will on account of being Triple Negative; this additional treatment will give me a higher rate of success and survivorship. Ultimately I am just glad it is not more chemo. I have a consult scheduled with a radiation oncologist next week, so I'll learn more then. For me, the toughest decision so far with regards to radiation is where to have it done, because John and I hope to be back living in DC this summer and we want to be sure it is convenient to home and work.

Additional Pembro Infusions. Part of the clinical trial I am participating in requires an additional 4 Pembro (or placebo) infusions at the tail end of this whole thing (these would be spaced out over 3 weeks each, just like the AC). I am fine with that, and I do not count it as chemo. It will not take my hair or anything. It tacks on time at the end but overall it will not be super disruptive to my life and schedule, and it could potentially be incredibly helpful in preventing recurrence.

How Are You? Just Fine, Thanks!

How are you?
There is so much to this question for me-- obviously now, but I have actually always struggled with this greeting.
I don't really know why. I think I have always been a self-reflector (one who self-reflects?), so the question, to me, reads deeper than it should.
I want to tell you of all the assorted ways that I feel, of how I am truly doing. I have learned to embrace this awkwardness about me, but it took a long time to successfully supply the rote and expected response of, "Great, thanks! How are you?"
I do not attribute any sort of callousness to this greeting, though I think there are better ones out there, ones that won't cause people like me (over-thinkers?) to pause, mentally review their life story in its current iteration, and then blather on about how I take the dog, Toby, for walks daily unless it is too cold or possibly rainy, which it has indeed been, and then a barrage of medical updates, also I like when I see this white deer on my walks, oh and I am definitely terrified of catching the flu this season, and I have been watching the show "Riverdale" and it is actually not that bad!, I have had some contract work so that's super cool, oh and also I am rereading A Wrinkle in Time before it hits the theaters... etc. So you get the point, yeah? More odd is that I am not otherwise an over-sharer.
So that was a really long way to get to an update about how I am doing. I am fine, thanks! How are you?

I have two chemo infusions left, scheduled for February 16th and March 7th. This new chemo (adriamycin & cytoxan) is a great deal suckier for me than the previous stuff (taxol & carboplatin). I may not have shared with you already that there is a nickname for adriamycin... the Red Devil. Named so for its color (yep, it really is red) and for the toll it takes on patients. Also because it must be administered very carefully so as not to damage skin or veins-- my nurse actually sits and pushes the red devil in via giant syringe. YEAH. It takes about five minutes total which makes me think of the phrase, "A moment on the lips, a lifetime on the hips," but reimagined as, "A moment in the port, a week on the couch." And a lifetime of no more cancer, right?
Thankfully there are meds to counteract the nausea, which is helpful-- but really what it means for me is major food aversion. Everything sounds disgusting for at least a week. Some advice I received from someone in the Young Survivors Coalition (this is an org for people who have had a breast cancer diagnosis while they were young) was that when the brain and the stomach agree on a food, you eat it. This has resulted in some interesting dinners, such as tater tots (just tater tots, nothing else), just fruit or fruit snacks, just a sweet potato. I have even had some meat, just because it did not repulse me. So we will get through this next month and reconfigure the food situation once more.
For my next infusion, I have called in reinforcements: my mom is coming to visit again!

One more update that I am even less happy to report is that I had to spend a couple nights in the hospital last week for neutropenic fever. LE SIGH. Please do not worry, because it was not something serious. But it could have been, so they keep you for a few days, no matter what. Like cancer jail.
A neutropenic fever means low neutrophils plus a fever. Very low neuts, as they were at .2. My fever was low grade (100.6 at its highest), but they tell you to come in if it is above 100.4. I first called the on-call oncologist, who said to take a Tylenol (you are not supposed to do this unless explicitly told-- they do not want you to mask a fever), go to sleep, and if it spikes again in the night, to come in. It did and we did, at 3:00am (NATCH, because who goes to the ER at a normal hour?). Long story short, they transported me to the hospital, gave me strong antibiotics, and observed the hell out of me. After many a test, they could not find the source of my fever, and really it could just have been my own regular bacteria causing it since my immune system was compromised. My fever went down and stayed down right away, and once my neuts got back up to a safer level (1.4), they let me go. I disliked this entire experience, but was super grateful for John staying the night each night, and for the amazing medical personnel at every step of the way.
Side note: Who are these people with these insane jobs? They work ridiculously long hours and see some horrifying sh&* and I just do not understand it. My EMT works 24 hour shifts! And still volunteers as a volunteer firefighter/EMT on the side! Just... no. But thank you, thank you, thank you, to those who do this work.

Tomorrow I have my first appointment with my plastic surgeon.

Cool story, Hansel.

I asked for a sweet potato, and I got a sweet potato. Thanks, John!

I can relate.