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. 

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.

I am the Neutrophil Queen (& WTH is Immunotherapy Anyway)

This week's labs (CBC, or complete Blood Count) report came back from this morning's blood draw, and my neutrophil count actually increased! I am up to a 1.89 from a 1.68. This is surprising because the chemo drugs that I am taking (Taxol and Carbo) are supposed to guarantee a drop in neutrophils (which are a type-- one of four-- of white blood cell, and help prevent infection. Infection is not a good thing for me.). Since the chemo wipes cells out indiscriminately, bad or good, because it cannot differentiate between them, it is expected that they will inevitably drop. [I am not a medical professional and so I know I am likely missing important details but hopefully am catching the gist... please bear with me if you are more knowledgable than I am.]

Since my counts are still above 1.5, chemo tomorrow is a go. If they had dropped, I would have had my chemo pushed back a week and would have instead started a neutrophil booster. If you read my earlier post about this, a possible side effect from the booster is bone pain (or ache). Luckily, since I do not have to have the booster this week, that means one less booster overall during the course of my treatment. It is, however, inevitable that I will have the neutrophil booster. It's okay. It's going to be all right.

Since I am going to have chemo tomorrow, and it will be the third week, that means I will also receive immunotherapy (pembro or Keytruda) or the saline solution placebo, as part of the clinical therapy trial I am participating in. Here is a review of immunotherapy and my trial:
It is a 2 to 1 chance that I am receiving immunotherapy. My trial is in Phase 3, which means it has had positive results in its first two phases. My non-medical explanation of immunotherapy is as follows: immunotherapy is some of the most groundbreaking research in cancer treatment in recent history, and is blowing researchers and the medical community away with its results. It works with the body's immune system to identify, target, and kill cancer cells. My immunotherapy is the type that works with the immune checkpoint inhibitors, and has already been approved for other cancers such as melanoma (and a few others). Former President Jimmy Carter reportedly was treated by the immunotherapy that I might be receiving. The really kickass thing for me is that while Triple Negative Breast Cancer makes it so that there are some types of treatments (namely, hormonal) that do not work for me, immunotherapy puts a big one back on the table.

Here is more about immunotherapy if you are interested.

Answers to FAQ

Cancer sucks, and it can really freak everyone out. People literally whisper to each other when learning about a friend or colleague's news of a cancer diagnosis. I know because I was one of them. And it's totally human to have that reaction. You don't know how they are doing, are they going to die, where is the cancer, what is the treatment, is there a treatment, will they become weak and scary-looking? Will I ask the wrong question and inadvertently make them feel bad? I want to help make this all a little less uncomfortable and less mysterious for you, reader.

Answers to FAQ:

• I have been diagnosed with Triple Negative Breast Cancer (TNBC) and I am between Stage 2b and Stage 3a. (edit: my records do say Stage 3a. However, Onc. Dr. F. said it "could be" Stage 2, but it doesn't matter so much right now as what it is at the end of chemo and before surgery.") 
• Thankfully, it has not spread to a second location (huge sigh of relief here, people). However, it is in the lymph, which means the little baddies (cancer cells) are floating about willy nilly. This is why we start with chemo-- we are going after those jerks first. 
• I discovered the lump on my own (PSA: humans with breasts, please be diligent about checking your breasts regularly. Be a warrior and face it head on, always.) It is in my right breast, and it is not super small (~4cm). Quote my friend K., "OF COURSE it is in the right one. It's ALWAYS the Right's fault!" 
• It does not run in my family, though I am awaiting genetic testing results. 
• I have amazing health insurance through John-- thank you, labor unions! 
• I will lose my hair. Possibly eyebrows/lashes, too. 
• But I will have a wig (or two), and I am determined to have fun with this. Also, hats. 
• A huge thank you to my long-time hairstylist/artist and dear friend, T., for her help on procuring and styling my future wig. 
• In the meantime, I have chopped a cool 10 inches of hair off and I am rocking a darling pixie these days. 
• Although I have not yet begun treatment, I am consistently told to expect to be able to live a mostly normal life. I will likely experience some fatigue, but most side-effects will be fairly easily mitigated (with other drugs such as steroids, anti-nausea medicine). 
• Every person going through treatment has their own story and is impacted differently. 
• We are living with my sister- and brother-in-law and 4 year old nephew in northern VA. They have incredibly and generously insisted that we now stay throughout my treatment so that they may provide extra support for both of us. (I have insisted that they always have an out, because while this is all manageable it is also A LOT. Additionally, I am known to be independent af so this will be a growing experience in vulnerability and such for me as well.) 
• My treatment: 
• I am participating in an Immunotherapy clinical trial, which is helpful for many reasons including putting one more tool back on the table for me. It has been blowing people away with its successful treatment of other cancers. (President Jimmy Carter apparently had Immunotherapy?) I am near finalizing all of the details and will likely begin chemo on Friday of this week. (The trial is standard chemo treatment, + Immunotherapy (or saline placebo). I start on Friday, September 29. 
• After a bunch of chemo, I will have surgery. Not sure yet on lumpectomy/mastectomy but I can guess which and I am okay with it. This is probably March 2018? 
• Then radiation. 
• Then a final round of Immunotherapy (or saline placebo). 

I may have missed some, so please let me know by messaging me here in the comments or by traditional methods such as Snapchat.

Selected quote:

"OF COURSE it is in the right one. It's ALWAYS the Right's fault!" --K.

I am the Warrior (What is Triple Negative Breast Cancer?)

What is Triple Negative Breast Cancer (TNBC)?

From the Triple Negative Breast Cancer Foundation: 

"These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.

Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple negative breast cancer.” On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer."

To break it down, here are some plusses and negatives about TNBC:

• It's aggressive, meaning the cells are rapidly dividing. (-)
• The cells are rapidly dividing, which means that chemo is extremely effective. (+) 
• It means that some treatment options won't work for me, so I have fewer treatment options. (-) 
• It is an increasingly common breast cancer diagnosis for younger women, like me, and they don't know why. (+) (edit: this is probably more neutral than a plus?)
• Recurrence of cancer post-treatment is common. (-)
• Once past the 5 year cancer-free mark (~June 2023 for me), it becomes much less common to have recurrence-- far less than for those with regular breast cancer. (+) 
• The symbol for TNBC is literally 3 pink ribbons in a row. (-) 

Due to the rapidly-dividing cancer cells, and thus chemotherapy's extreme effectiveness, my treatment will begin with chemo (versus a lumpectomy or mastectomy, which is how more common breast cancers will begin treatment).

After chemo, I will take a few weeks off to let the drugs get out of my system and to do evaluative tests before surgery. I do not know yet the extent of my surgery (but I can imagine what it will be and I am okay with it).

After surgery comes radiation, which I am told is akin to spending the day at the beach with your skin exposed to the sun (naturally my response here was, "Oh, so radiation will be like a day at the beach!" I have been since disabused of this notion.).

And finally, I will round it all out with a few more weeks of chemo. Actually, I am participating in a clinical trial for Immunotherapy, so I may or may not be having this drug, or a saline-solution placebo, infusion throughout and at the end. I will post more about Immunotherapy in a later post.

Selected quote:

"Well that is a kick in the teeth." -- S.