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.

The Awkward Newbie (My First Lab)

This morning I go in for labs, which is the blood work that needs to be done the morning prior to receiving each chemo infusion. These lab tests monitor my complete blood count (CBC); for white blood cells (WBC), red blood cells (RBC), and platelets; as well as my metabolic panel, which measures kidney and liver function and electrolyte levels.
I have had one lab experience so far, when I went in last week as a prerequisite to admission to the immunotherapy clinical trial. Allow me to regale you with my awkward newbie tale:

Arrive to Lab location with more than five minutes to spare (always a win to arrive early! Avoiding unnecessary anxiety is important.) Check in with very nice and upbeat front desk human, who clearly knows everyone as he greets several individual patients by name, and asks me if this is my first time being there. "Yes," I say, smiling. I sign in and pay my co-pay.
He directs me where to sign in and asks me to take a seat and wait for my name to be called. As a newbie, I head directly to a chair next to a boombox. I love music. How nice.
Very quickly I remember that boomboxes have terrible sound quality. I then realize that all of the other people waiting to be called for their labs have chosen chairs that are nowhere near this cacophony. I think, ah, yes, wise pros... I consider moving seats but decide to wait it out. I am sure I will be called soon.
Twenty minutes go by, people arrive, sign in, and are called. They depart. I continue to wait to hear my name. Employees walk by with their lunches that smell delicious.
Suddenly I realize this boombox has begun to blast Clapton's "Tears in Heaven." I freeze, wondering if I am hearing correctly. (Of course I am, because music.) I then look around wild-eyed to see if anyone else has noticed, but no one meets my gaze. I am awkward so I laugh a little to myself. Eric continues to sing, "Because I know, there'll be no more... tears in heaven."
Fight or flight starts to set in, and when the next person is called and vacates her seat at the end of the row, I bolt for it. It is the farthest away from the bleating boombox. I text John, "Poor soundtrack choices here."
"PATRICIA WELT." A woman, presumably a nurse, is in the entryway.
I say, "Wel-TEE." She says something that sounds closer to this and everyone in the waiting room stares as I bebop my way over to her. (Note: I do understand why my last name is mispronounced and I am not angry about it, but I will correct you if I know we are going to be interacting more than once.) We walk to her station, she asks me my name and birthdate, punches keys on her keyboard, furrows her brow. Since I know I am there to have blood removed from my body, I push up my sleeve and bare it towards her. She swabs it with alcohol, inserts needle, and busies herself with her computer. She makes some frustrated noises at it, so I break the silence (because she did not speak a word to me this entire time. Zero explanation of what she was doing, who she was, what I was expected to do. Nothing.) by asking if she is having computer problems. She nods in the affirmative, clearly exasperated.
My blood is filling up a vial. I look down to my immediate right and see a large biohazard bin of used needles and other gross items. I wonder if that is all from today? I consider asking her, but then decide that I really do not want to know the answer.
The vial is full. She removes it and tells me to hold the gauze on the location tightly as she applies labels. Next she hands me a container and stares at me. I stare back blankly. She says, "I'll need a urine sample. Do you know where the bathroom is?" I do not.
I say, "It's my first time here. I don't know where anything is." She tells me where to go, shouting behind me when I mistakenly turn right too early. I have to walk through the waiting room to reach the bathroom. Everyone stares again and I bebop past them. I smile. I do as I am told and return it to the nurse and take my seat next to her. She is frowning at the computer again. The nurse across from us also appears frustrated about her computer.
"Oh, so this is all computers that are giving you trouble today!" I attempt conversation once more.
"Yes," she says. "We are grieving. We need grief counseling!" She laughs. I awkwardly laugh back, perplexed. I cannot wait to get out of here.
Eventually I realize that she is staring at me. She asks if I know where I am supposed to go next (I do not). She directs me back to the very friendly front desk person who will help me out, and he does.

Suffice to say that right now I am pretty pumped to be heading out the door for today's labs. I am more seasoned now, my friends. I have headphones.

Addendum: Later that day I shared this story with my sister-in-law, K., who asked if they used the chemo port to draw the blood samples. I said, "No. And I didn't want that lady to take my chemo port-virginity, anyway!" Truth. I did not.

Update: Today's labs were much more efficient and I was greeted warmly by the nurse. The music, however, was Clapton again (thankfully could not hear which song since I was clear across the room). John has offered to make them a mixed tape. 

Preparing for Life with Chemo

With my treatment plan now set (starting on Friday!), I have been spending most of my time prepping for life with chemo. I thought I would share with you some of these, in case you are interested in what I have been up to since blasting my news to the world.

My preparation has been guided by what I have curated from Chemo Class (an actual class one is required to attend in order to begin chemo, where you learn about how toxic you are after being infused with powerful drugs), by various booklets, books, and (trusted) websites, from survivor friends' blogs (thank you lady K.!), and from my own personal preferences.

Research all of the things.
When I start something new, I tend to fully immerse myself. I want to know everything about the topic. (Yes, it can cause overwhelm.) In this case, it is helping me to accept that I have cancer and to identify as someone who is now doing the things that people who have cancer must do. This includes:

• Buy all of the books (and even a DVD!).
• Attend Chemo Class (as previously mentioned).
• Talk to all of the people. 
• What was their experience like? What resources did they find helpful? How did it impact their daily lives? Their professional lives? How does it impact them today? 
•  A huge amount of gratitude for the survivor friends who have contacted me and offered themselves as resources, and to those with friends who have connected me to their survivor friends. I am (somewhat slowly) reaching out, and I so appreciate all of these incredible connections.

Have medical port put in.

Did you know that I have already had a minor surgery? Yes, I had to have a medical port, aka chemo port, aka Power Port (actual brand name) inserted into my chest. This was my first surgery EVER, and thankfully it was not that big of a deal overall. Dr. V. performed the surgery, thus formalizing our professional relationship. It was explained to me (something) like this: "I will be inserting this plastic device into your chest, under your clavicle. I will make an incision, then make room for it, and check the vein nearby to ensure that it can be used. I will also check your heart and your lungs while I have you open. The operation will take about 30 minutes. You will have some anesthesia so you will be out for the surgery. You will not be able to drive afterwards." I am obviously paraphrasing, but these were the major points. In addition to having my first surgery, I also was wheeled out of the hospital in a wheelchair-- another first (thinking of you, Sime). 

This device (pictured below) is for the chemo infusions; they will use this instead of arm veins. It is a small plastic piece with an opaque, softer plastic middle, which is where needles/IVs will be inserted each time. If you see me IRL, feel free to ask to view it; I am a small person so it is pretty visible, and I have a small surgical incision scar located right above it. At this point in post-surgery healing, I barely notice that it is there, and I can even easily do yoga postures that include chest-openers.

My heart and lungs looked great, by the way.

Picture of a (pretty purple) Power Port. 

Tests, tests, tests.

So many tests. 

Breast MRI: Helpful tool for gathering further information about the tumor and its size. 

This was by far the most undignified test of them all, as I went in thinking, "Oh, MRI NBD I just lay down and then inserted into a tube and then listen to a lot of noises and try to breathe/not panic." Mostly accurate except that I had to lie down in a prone position, with breasts hanging down in between two slots. (Hey, sorry but I did warn in my first post that I would be talking about breasts here.) It was so rude. The indignities. And that was my Saturday morning! 

CT & Bone Scans: Fairly straightforward, simply drink chalky, berry-flavored barium drink at proper time (thanks to John I got this mostly accurate). Arrive at bone scan location, receive injection of radiation, promise to return in three hours. Drive to the next location, receive CT scan. Eat some lunch, return to bone scan place for (you guessed it) my bone scan. These tests were necessary to determine if the cancer had spread to a second location (verdict: it has not, which is a huge win). 

ECHO: From WebMd: "An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart." My test was the Doppler. The technician, Todd, was really great and I like that he explained everything to me. He told me that I have a good heart and that the test results would likely reflect that (they did). He also made a few jokes that were funny, even though I knew he uses them on everyone. "Now I'm going to take a look at your liver to see what's left." (He used to work near a college campus and this one apparently freaked out all of the college students.) He also gave me an ultrasound picture of my heart and said, "Here's a picture of your heart, so now you have proof if anyone accuses you of not having one." All delivered deadpan, which is the best humor, in my opinion. Thank you, Todd! 

I have a heart! And it is a good one. (Note: this is NOT my uterus.)

ECG: From WebMd: A doctor may suggest "an electrocardiogram -- also called an EKG or ECG -- to check for signs of heart disease. It's a test that records the electrical activity of your ticker through small electrode patches that a technician attaches to the skin of your chest, arms, and legs." It literally took longer to set up than to administer this test. It turns out I do have a very good heart; my resting heart rate is low (high 50s), although now that I think back on it, Researcher S. did not actually tell me the rate that day. Anyway, she did show me the graph and it all seemed lovely. (I am not a trained scientist, and I am aware that my descriptions here betray this, and I am okay with that.) 

Genetic. I spit kind of a lot of saliva into a vial that they sent away to a lab. I was told that insurance will definitely cover my test on account of me being so young and having cancer. The results came back early this week and indicated that, as far as they know with the research at this point in time, this is not an inherited gene. Therefore there is not a concern for my mother, sister, aunts, cousins, etc. to be tested, but they should keep up with mammograms and should speak with their obgyns. 

Make hair decisions.  

As you are aware, I've chopped 10 inches off my hair and currently have a pixie. I got to this decision quickly, but I had an in-between bob for a few days that I just could not embrace, no matter how many times I compared it to Jackie O. 

Other decisions that needed to be made included whether or not to attempt to save my hair via cold cap technology. If you have not heard of this, the gist is that you have a cap that is kept at a certain temperature that is placed over your head/hair for a bit before chemo, during chemo, and for a few hours following chemo. The upkeep is not light, as you have to switch out the cap for a new cold one every 30 minutes, as it cannot drop below that certain specific temperature. I decided to forgo this option due to its high maintenance, the fact that it is not covered by insurance, and it's success rate is around 50%. Seems like a great deal of trouble for it to not work out. Meh. Here is more info on one kind of cold cap, if you are interested in learning more. 

Thus, I am going for a wig (or two), with some trusty hats and beautiful scarves as additional options. My lovely mermaid stylist, Trinity, has spearheaded (ha, so many head puns) the effort to procure a wig and to style it for me. She has been my friend and stylist for about a decade, and I am so lucky she is on this case. In terms of going and being bald, I was told that it will take a few weeks before I notice anything (and people, I have a LOT of thick hair), so we shall see when it actually becomes unsightly. I am hopeful that Phase II of chemo will be lighter and regrowth will begin. If anyone would like to start a pool for the date I will need to shave it, let me know (being somewhat serious here, because I need to laugh at cancer on occasion. For me, it is appropriate)!

Buy anti-bacterial and disinfectant everything. 

Also known as "spend all of your money at Target." I purchased disinfectant wipes, anti-bacterial soaps for every purse and bag, tons of bathroom cleaners; you name it, I have now disinfected it. One of the medical professionals that I am in touch with regularly (I will refer to her as Researcher S.) said, "You know those people that wipe down their grocery carts and put anti-bacterial soap on all of the time? That's you now." So, okay cool. I can do that. 

Salon manicure/pedicure.

Well this is clearly optional, but you might be aware that I am a very major fan of having my nails done, preferably with a gel manicure from a salon. I have learned that I must give up any nail salon visits during chemo treatment, so as to avoid infection. I can, however, paint my nails with regular polish, and they even recommended the Sally Hansen Hard as Nails line. It will help keep my nails strong (thank you J. for the nail polish!).

Fill prescriptions. 

So far there are just three prescriptions; one for a lidocaine cream to be applied to the site of the chemo port about half an hour before going to my chemo appointment, and two anti-nausea medications (compazine to start with, ativan if more is needed). 

I also needed to buy medications for gastrointestinal concerns, which I prefer to preempt as much as possible by eating healthy, using known natural options (think: prune juice), and supplements. 

Regarding supplements, I have been okayed for the use of: a Vitamin B complex, Vitamin D, multivitamin, turmeric, and L-glutamine (may help prevent neuropathy, or numbness in fingers and toes that is a potential long-lasting side effect of chemo).

Prepare batches of food to freeze.
My sweet and loving husband bought me an Instant Pot, which if you are not aware, is a device that is essentially a kitchen swiss army knife. Namely, it cooks things super fast, which I very much appreciate. I have successfully made a batch of veggie Bolognese (featured in this previous post), which I put into smaller containers to freeze for use on days when I am not interested in cooking (lo, this turns out to be most days, and I have not yet begun treatment). UPDATE: I somehow failed to mention earlier the batch of pesto that my mom made me while she visited recently, which is actually better than the veggie Bolognese. Thank you, Mom!

I also learned in Chemo Class that I should avoid eating my favorite foods during treatment, as it will change my relationship to those foods. This presents a kind of dilemma, right? So I am to eat the foods I do not like? No. 

I will keep you posted, dear reader.

Visit the dentist.
Due to working on three campaigns in the past year, I have to fess up that I was a few months past my time for my dental checkup and cleaning, and it turns out this is pretty critical thing to have done before starting chemo. This is because chemo goes after the rapidly-dividing cells in your body and does not differentiate between the ones you need (mouth, hair, nails) and the ones you are working to eradicate (cancer cells). Therefore mouth health is now quite elevated, with avoidance of bacteria as a primary goal.
Given that we just moved, I had to find a new dentist; and given that this has been moving very quickly, I felt some pressure to make it happen right away. Luckily, my in-laws had a great recommendation very close by who also took our insurance and was able to get me in that week (albeit at 7:30am. I did not complain, however). I also count myself lucky because I have fairly amazing teeth and I was thrilled to announce to everyone that while it may be true that I have cancer, I sure as hell do not have any cavities!

Prepare my chemo bag.
Thank amazing family and friends, I am heading into my first chemo appointment incredibly prepared. I have cozy clothing, an incredibly soft comforter, gentle lotion, lip balm, warm socks, soothing ginger chews and peppermint tea, and a few current fashion magazines. I am going to show up to this appointment like the proud newbie cancer patient that I am, fully armed with comfort and the love and support of all of you. Thank you. 🙏

This is definitely going to keep me warm in the chilly chemo room!