My TNBC Birthday Fundraiser-- Thank You!

This week, I held a Facebook fundraiser in honor of my birthday (3/27) to ask for donations to the Triple Negative Breast Cancer (TNBC) Foundation to support their research efforts. As you know, I am currently (nearing the end) of my own treatment for this subtype of breast cancer. As you may not know, March is Triple Negative Breast Cancer Month. 

More research needs to be done to boost the rates of survival for TNBC (see below), so I asked my community of supporters to help by contributing any amount they were comfortable giving. Their response? To completely blow my initial goal of $1,000 out of the water in the first 48 hours. Now, I have done some fundraising in my day, so I wanted to see if we could do a total of $3,000 in the week and a half leading up to my birthday. 

WELL, DEAR READER. My birthday is still two days away, and I am so proud and touched by the outpouring of support as we made this goal in just one week! Sixty family and friends generously made donations (this is an average of $50/person) and I'm not crying, you're crying... I want to especially thank my friend Mark M. who brought us home when he contributed a very large amount today, because he wanted to ensure the goal was met. 

Please know how much this means to me. 

You have helped to give me an incredibly special birthday gift this year. 

ICYMI
Why does TNBC have its own month?

• TNBC is a less common than regular breast cancer (~15% of breast cancer is TNBC);
• TNBC is aggressive, meaning the cancer cells grow *very* fast; 
• Women of color are more likely to have TNBC;
• Younger women tend to have this subtype of cancer, which has often meant it goes undiagnosed for longer (I have heard several stories of women who felt a lump but were told it was probably nothing but to watch it and come back in 6 months, only to then be diagnosed at Stage 4);
• There is less research on TNBC than of other subtypes of breast cancer;
• Chemo sometimes does not work for TNBC (it has for me, thankfully!);
• TNBC does not respond to additional targeted hormonal therapies, meaning there are fewer ways to beat it;
• Recurrence rates are higher for TNBC in the first 3-5 years (but then are lower than other breast cancers once this benchmark is met);
• The survivorship rates for TNBC are lower than regular breast cancer (77% vs. 93%).

Thank You!!

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. 

The Perfect Pair

I have not written much here about breasts specifically, mostly just in reference my cancer type. I am going to do so a bit in this post. Which is to say, I get a little personal and ramble-y here. 

It should come as no surprise to hear me say that I have large breasts. Not even "for my size/frame," but legitimately large. I will admit to feeling some amount of life/the universe's humor when I initially received a breast cancer diagnosis. Like, OF COURSE I HAVE BREAST CANCER WHERE ELSE WOULD IT BE. Ha ha, breasts. 

As we wind down the days to my double mastectomy surgery (now scheduled for Friday, April 13th; don't worry, I am not superstitious and instead invite all of the black kitties to cross my path), it is important that I spend time processing what is to come, how my body will be changed, and my emotions surrounding that. It is time to say goodbye to a part of my body that I have been conflicted about since I was around ten years of age. 

I know that I am not alone in being a person whose body people felt they had permission to discuss publicly and unkindly. I share my experience as a means to reach out, to connect, and also for my own processing. 

Ultimately, my experience of how my body image evolved, coupled with being bullied every day from Pre-K through the end of 5th grade (when I moved out of the school district) and ostracized through my high school years, has led me to be an extraordinarily empathetic human being. I have a sixth sense for how someone is feeling. I am a great listener. I have little tolerance for mean people. I work to call it out when I see it. You might say that my shape has played a large part in shaping who I am. 

Unwanted Attention

Developing breasts early was not my choice. That may go without saying to you, but it does in fact need to be said, because with it brings oft-unkind outside observation and unsolicited commentary. This began at the tail end of my time in one very small, rural northwest Minnesota school district; after the 5th grade I moved every year until my high school sophomore year. I mention this because when you begin a new school, you get to deal with the observations, commentary, and face judgment each time afresh as you meet new people and they work to figure out who you are and your place in the social hierarchy of the school. If you are unsure of what I mean by this, I will tell you that (some) people tended to form and share opinions about me and my imagined habits or desires based solely on my body type (plus socioeconomic status). (Suffice to say I fully embraced the grunge and skater era baggy clothes popular during middle school, but it made me angry then as it does now how often young women's bodies are scrutinized, sexualized, and policed.) 

Sometimes the comments were cruel, such as the "slut" label. Or the time I found out that I was a member of the "paper bag club," aka someone the popular middle school boys deemed "f&*3-worthy, but only with a paper bag over her head." Other times they were on the more passive-aggressive end (living in the Midwest and all), such as a female high schooler telling the group of males we were hanging out with that her mother told her that at least she won't have saggy breasts when she's older. Or the times I heard someone say, "You just like her because of her big boobs." You get the picture. (NOTE: I share not for pity but because this was my experience, so please do not worry-- I turned out just fine.)

My Body Type

I am short, so it has always seemed to me that my breasts were incongruent with my frame, but doctors have always assured me that I am proportionate. There were several years that I entertained the idea of a breast reduction. I was told that for insurance to cover the procedure, you must experience back pain, which I did not. Many people assume that I do have back pain and have recently said that must be something that I look forward to (diminished back pain), but this has never been an issue for me. So, I guess the docs were right about being proportionate? If you know me well enough, you know that I pined and occasionally obsessed over having smaller breasts. They say the grass is always greener, but I have to tell you that I rarely had anyone actually say that they wanted my size. 

Alas, in light of my diagnosis, I must say that one should be careful what they ask for. I GUESS.

The Male Gaze

I'm not going to say much here aside from #tfw you realize that someone is talking to your chest, or brushes your breast "accidentally." Or just touches you when you do not want it FFS. #metoo

The Perfect Breast Size

Sometimes I attempted to gain agency over the topic by serving as instigator, seeking more information (and perhaps some male approval). During a summer internship in DC, I recall a conversation with another intern (white hetero male) during a Metro ride in which I asked him what he thought was the perfect breast size. My intentions were perhaps borderline flirtatious (nothing came of that) but also very much grounded in insecurity; I had just had a serious relationship end badly and I was casting about in the world trying to figure out where I stood with potential love partners. (Read: I was a hot mess.) 

He used the back of the Metro seats to show me a scale of breast sizes, from small to very large, and where he pegged me (closer to "very large," maybe at 3/4) and then finally where his personal preference was (closer to "small," at about 1/4). He assured me it was not "bad." We laughed and moved on to the next topic.

I share this only because it has stuck with me so clearly. I know I should not care about what other people think, but that sentiment does not ensure the ability to follow through. I do not fault him; I asked. However, it did feed into my fears and to many years of worrying that I would be crossed off many a "date-able" list due to my large breast size. Am I a freak? I can show you a doctor's note that says that I am proportionate.

Identity & Femininity 

I have heard that I should expect to struggle some emotionally with my femininity in light of losing my breasts. Many women do associate their breasts quite directly with femininity. I cannot attest to sharing this feeling, personally, although of course I can understand why. Perhaps I will someday, but I kind of doubt it. 
Of course I am not EXCITED about this major surgery, but I am also not particularly sad to see the ladies go; although it is a pretty extreme path to get there. I am in a situation in which I get to pick out my breast size. Suffice to say, they will be smaller. My perfect pair? Maybe. Perfect with scars.

A Proper Good-Bye

I do believe in a proper send-off, however, and I have my dear friend Kate to thank for allowing this to happen. Last fall, Kate gifted me a boudoir photo shoot from Cassidy DuHon Photography after she heard of my diagnosis. The photos are beautiful, and no you cannot see them (but you may check out some of the fierce professional headshots that Cassidy also took, below). THANK YOU, KATE! Love you.

From Refinery29's Instagram. Shape, nipple-size, color, double As, double Fs, one-bigger-than-the-other-- it doesn't matter. 

Healthy boobs are happy boobs!

I could not agree more.

Photo Credit: Cassidy DuHon Photography

Photo Credit: Cassidy DuHon Photography

Photo Credit: Cassidy DuHon Photography

Photo Credit: Cassidy DuHon Photography

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.