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?

The Report Is In: I'm a Survivor

The results from the surgical pathology report are in, and I have had a pathologically complete response (pCR) to neoadjuvant (before surgery) chemotherapy.

Meaning, all of the cancer is gone; the chemo killed it. 100%. 

ALL OF IT (that we were aware of-- because come on, cancer is a huge fucking asterisk; but today I am ignoring that).
Yes, I will still be doing some radiation. The medical community is a bit divided on this, but for the fact that I am triple negative, young, and I was Stage III. It's okay, because at least it's not chemo!

Friday, John and I met with my surgeon's team to review the pathology report (it basically says "negative" the whole way through, and in this case negative is a beautiful, gorgeous, incredible word). The PA, M., told us that the whole office cheered when they got my report back and that "This doesn't happen very often." She also mentioned that I am "stoic," and that I seem like someone who is going to push myself more than I should in terms of getting exercise. Ummmmmmmm I don't know what you even mean.

Today, John and I met with my oncologist, who also reviewed the pathology report with us and confirmed that it said "negative" the whole way through.

She then reiterated what she had stated in an earlier email that this is "great news prognostically." Meaning, the rate of recurrence is much lower for me now.

I asked if I will have scans after radiation. She said, "No. There is nothing there to scan." (Here is an asterisk again but I feel confident this is true right now.) 

I asked what my new staging is (original was Stage III). She said it is nothing; there is nothing left to stage.

I asked if I could say the phrase "cancer-free." She said yes. 

I asked if I could use the term "survivor." She said yes. (see below)

Then she said, "See you in six months for your regular check-in," (but really I am still in the clinical trial and so it will be sooner, but that's okay).

I want you to know that I received this news while wearing a gingham button-down shirt (J. Crew because it's me and J. Crew everything I don't care if you hate it) that I only noticed had a stain as I sat down in her office for the appointment (coffee? Most likely). After hearing the news and getting ready to depart, I realized that I also had mis-buttoned my shirt... because of course I did. 

JUST KEEPING IT REAL FOR YOU ALL.

Honestly, John and I are still processing this amazing news and our fresh new start in life. I am still a bit stunned. But also like I expected it, but not in a fake-ego way, because it was never a given that I would have the absolute best outcome I could... so there is a lot to unpack.

I have a ton of gratitude; for John, for Kelley and David, for my mom and my dad, for all of my family, my friends and for you, for my body, for my medical team, for my cancer mentor friends, for my colleagues, for pets and deer, for spring finally being here... Thank you. At the beginning of this, I knew I would need a community of support. You all truly rallied and I felt your support and love the whole way through. Thank you so very much. 

Obligatory Destiny's Child "Survivor" viewing HERE. 

If you have any other survivor-related songs that you recommend, feel free to comment or send to me via other medium. 

Showcasing some of the gorgeous blooms I received pre-and post-surgery. 💓

So Many Appointments (Again)

I am in appointment season; ending one treatment phase (chemo), entering the next (surgery), and planning for the last (radiation).
Since my final chemo on March 8th, I have had one follow up with the Nurse Practitioner (just a check-in to see how I was doing).
John and I met with the breast surgeon on Friday for my pre-op appointment, which included another ultrasound of the right breast, where the tumor was, and of the lymph nodes under that arm (which now show no cancer activity as well!). Dr. V. says that he expects that my post-surgery pathology report (this will provide the most accurate information about my cancer status since my biopsies and scans last fall) to show either near-complete (98-99%) or complete (100%) pathological response. YAAAAAASSSSSSSS
Additionally, he stated that this means that my prognosis is at 90% of never having a recurrence. This, my friends, is the gold here, and I will admit to feeling skeptical, a little afraid to believe that could be true for someone with TNBC. Don't get me wrong, I am extremely happy to hear this, but I am also going to ask my medical oncologist for her opinion. One thing I have come to learn is that different doctors have different takes on how they discuss cancer, for example if they use the word, "cure," or whatever. I tend to view my medical oncologist as more of a "cautiously optimistic" type, and my breast surgeon is definitely more... emotive.
Dr. V. also discussed his thoughts on how many lymph nodes he will take (something he won't know for sure until we are in surgery). He wants to be sure to take what is needed, but not to take too much. He thinks maybe 3-4, but to be certain he will first inject me with dye and radiation (sentinel lymph node biopsy) that will highlight any active cancer. I am hoping for this low number, because the more you take out, the higher the likely is for developing lymphedema (swelling and/or cording in the arms where lymph nodes were removed). I do not want lymphedema. The nurse navigator, M., also met with us to book my first physical therapy appointment and EKG that will need to happen prior to surgery.
In the meantime, Dr. V. wants me to practice calming exercises such as meditation, breathing exercises, and chest-openers to help with my posture.

Next we attended a breast surgery pre-op class, where John was congratulated for attending and for taking notes (he should get tons of credit for being a great partner! And this also weirds him out a little). We learned about:
Pre-Surgery Prep

• Move oft-used items on high shelves to low shelves (I will have limited range of motion for a bit, aka T-Rex arms);
• House cleaning;
• Meal prep ("This is not the time to say no to people who offer to bring you meals");
• Remove tripping hazards;
• Stock up on additional pillows for propping up in bed (I will need to sleep only on my back for a bit);
• Purchase mastectomy bras (I didn't know what these were, either. Basically a super-soft front-zip sports bra with lots of ways to adjust to accommodate swelling and bandages-- OR you can go the high fashion route with AnaOno or Stella McCartney);
• Dr. V. suggested that since I am going to attempt to avoid opioids for pain management, I should take cold showers for the 5 days leading up to surgery (ugh).

What Happens in Surgery

• The breast surgeon will perform surgery first, and then the plastic surgeon will take over for reconstruction;
• Will last 3-4 hours (and I will have to stay overnight one night);
• The goal is to remove all of the identifiable breast tissue; 
• I am having what is termed a "total or simple" mastectomy; 
• Not sure yet if I will have direct-to-implant or expanders (will know more at plastic surgeon pre-op appointment on 3/29). 

Post-Surgery

• Bland foods are ideal for the first few days (le sigh);
• Hydrate, hydrate, hydrate!;
• I will have at least 2 drain bulbs (look like clear plastic grenade attached to tubing that will be the means for draining extra fluid from the mastectomy site and yes this sounds gross but we deal, do we not?!), and they gave me a drain belt, which is a definite fashion statement;
• Must empty drains and record amounts;
• No heavy lifting for 4-6 weeks;
• Must do daily PT exercises; 
• Take it easy but stay active; 
• Complementary pain management (distraction, relaxation, progressive muscle relaxation);
• Drains removed when fluid output becomes consistently minimal;
• We should receive the pathology results within a week;
• Follow up with breast surgeon at 6 months.

After Treatment

• Reducing risk of recurrence:
• Maintain healthy weight (includes limiting animal-based products);
• Limit alcohol intake; 
• Adopt a physically active lifestyle;
• Smoking cessation.  

NEXT UP:

• Radiation oncologist consult;
• Medical oncologist post-chemo/pre-surgery check-in; 
• Plastic surgery pre-op;
• 30-Day post-chemo labs and appointment with Nurse Practitioner; 
• Pre-surgery phone call with a nurse; 
• Physical Therapy initial appointment;
• EKG. 

My mom will be coming out for the surgery and to help me out for a few days afterward. Thanks, Mom! 

So now you know what I am up to (aside from list-making). Very lucky to have contract/work-from-home flexibility during this time, and for the flexibility John has had with his schedule so he can attend some of these appointments with me. It is true that having someone with you to help absorb all of the information is a wise and good thing.