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!!

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.

Happy New Year & Other Musings

Happy New Year!
I have not been one for keeping you up to date, I know. Holidays and general laziness. Also, despite being from the North, I just really do not enjoy being cold and thus end up bundled up under blankets with a book and a cat as often as possible. As such, I am quite happy that the next five whole days will be noticeably warmer, and Toby the dog will love me once again as we resume our walks in the woods. Also, if I have not told you yet, or you do not follow me on Instagram, there are gorgeous deer in the nearby woods. I love them. One of them is piebald, which means mostly-white but not albino (not the technical definition, but you can look it up). Very rare! and I consider a positive sign for me. Also, we have come to call her my patronus. Which in my head sounds like the song "My Sharona." Are you with me? lulz

Public Service Announcements
It seems that the flu is really terrible and an epidemic this year so please stay home if you are sick. THANKS
Also if you did not get a flu shot, please do so.
THANKS

What's New
I did finish my first phase of chemo-- all 12 TC or Taxol/Carboplatins are complete. That was a lot of chemo, my friends. Yuck.
I also began Phase 2, which is known as AC or Adriamycin/Cytoxan (sounds delicious!). I will have just 4 total of these infusions, every 3 weeks, so cross your fingers that March 2 is the end of chemo for me. Prior to starting the AC, which I did the week after finishing TC, with no breaks, I had to have another Echocardiogram and ECG. Adriamycin is apparently not always great for heart health so they monitor it pretty closely. Additionally, since I only go every 3 weeks, each time is a potential Pembro infusion. John is convinced that I am getting it, and I am not sure, except for a slight rash on my cheeks (attractive, yeah?) I have gotten the last two times of potential Pembro. All I know is that saline solution does not give me a rash. Chemo is definitely testing my beauty limits, and I praise the Sephora goddesses (monetarily).

Chemo Buddy Features! 
In December, my chemo buddies were: Christine (who I unfortunately never did get to see, due to my low neutrophil count-- and I so appreciate her taking the time off work for me! I was sad to not have chemo that day-- because what is worse than chemo? Not having chemo... and not getting to hang out with your chemo buddy), Megan (featured here), Jessie, Barb, and John.
Jessie also brought me a gorgeous quilt that she MADE HERSELF. As I get older, I realize that more and more of my friends have creative talents, and it shocks me every time. How amazing! How did you even make time for that?!
I have known Jessie since 2004, when we met in Vegas on a post-election sad sack trip with a bunch of Dean friends (although she worked for Edwards... blame Courtney 😉).

Jessie is the best. 

My MIL, Barb, who is amazing, was in town for Christmas, and got to be my final chemo buddy! (John will be chemo buddy for the remaining infusions.) Barb is wonderful, and I am very lucky to have married into this family. 

Best MIL ever. 💗

The loml, at my first AC infusion. 

Gratitude

I also want to thank all of you for every single one of your well-wishes: your cards, care packages, tea, gift cards, a free week of food delivery service!, blankets, books, text/social media messages, phone calls, chemo buddies!, in-person visits (Becky! Kate! Matt!), FaceTime chats, flowers, and the *many* other incredible and thoughtful gifts and your different ways of being there for me during this suboptimal period. You get me through the tough parts, which mostly are just feeling as though this will never end... chemo is drudgery, and it can be discouraging on the vanity front... and I can do anything for another month and a half-- so wish me well with tomorrow's labs (let's go neuts!). 

Thank You, Labor Family

I have been writing this post in my head for about two weeks now, and just need to get it out there. I am afraid to do it wrong, which would mean to not do it justice, so I keep stalling. You just cannot thank people enough sometimes, simply cannot properly show the magnitude of your gratitude. Here’s a shot at it though.

I have mentioned before that John and I have been hearing from people across the country who are rallying for us. What I have not yet fully articulated is just how incredible our labor family has been.

Together, John and I have about 17 19 years of professional experience working for labor unions. I began working for the AFL-CIO political department in 2006, and went over to the National Education Association (NEA) campaigns and elections department in 2008. John has been with AFSCME (local & international) for about a decade. I frequently joke that I am married to AFSCME. I have known some of these folks for even longer, going back to my Dean for America days.

The people with whom we have worked with for most of our careers are our family, our friends, our brothers, and our sisters. Former bosses, colleagues, and coworkers from all three unions have been steadily reaching out to cheer us on and provide support.

Several former colleagues from the AFL-CIO are in touch about various things like wig resources (E.), chemo buddy times, lunches, and even doorknocking for the VA elections (I have been feeling so well, there’s really no excuse).

Thank you to my NEA colleagues and friends and BFFs; I am so lucky to count you on my side-- one of whom will literally be by my side tomorrow as my Chemo Buddy (L.), and who has also supplied me with one of the best cancer beauty books (Pretty Sick) plus a gift basket overflowing with Sephora hydrating facial masks and other comfort items. Thank you to K. for a very special lunch and discussion, and for all of your help, and for each of you who have been in touch. Thank you to all of you for your messages of support, strength, and love.

Thank You to Our AFSCME Family

A couple of weeks ago, the AFSCME (and some former NEA!) family organized (because that’s what we do) around John and me in a big way when they handed him a card bursting with what he calls “a brick” of Whole Foods gift cards-- and a very generous gift of cash (that literally keeps coming in-- we will thank each of you offline asap!). Blogging is all about vulnerability, so I will just tell you that we have teared up a number of times over these incredible collective and individual gifts. Thank you, AFSCME family. We have been overwhelmed by your love and support.

You have all allowed us some major relief during a stressful time when we have medical bills (super awesome insurance, but much of those tests are still expensive and there is still an out-of-pocket amount due-- again, cannot imagine not having this and if you are in support of repealing ACA then we need to have a serious talk), and the (temporary) setback for my job search. We have been able to purchase healthy foods (I’m recommitting to a mostly-vegetarian diet) and also to contribute to the family grocery runs with my in-laws. We haven’t blown through it all yet, it’s not like we bought a Wagyu steak or anything and a fancy bottle of wine, I promise. (But really, we did not.)

To some degree, it is somewhat embarrassing to be on the receiving end of all of this love and giving. This is the vulnerability that cancer is necessarily exposing, I suppose. One of those “hard lessons that cancer taught me, I can’t do it all on my own,” or whatever. It’s okay, I’ll lean into the discomfort. That’s where the growth is.

As I wrote in my original blog post, I will get through this successfully with love, humor, a mostly plant-based diet plus a ton of prescribed drugs, and with the amazing people supporting me. Thanks for being one of them. I love you. I will beat this.

Imagine (People are Amazing)

I mentioned previously that I have been slowly reaching out to tell individuals about the news of this bull**** intruder, and I am so embarrassed (because vulnerability is embarrassing to me) and incredibly grateful for everyone's incredibly supportive responses. I hope you all know how much you mean to me, how much your friendship matters, and how much I appreciate you.

Thank you to John, my hero team partner, the loml. With so much right now not going *quite* as planned, our love and relationship so outweighs it all.

Thank you to my sister- and brother-in-law, K. and D. I can't even know how to repay your or to properly show gratitude for everything you are doing for me/us. I did not see communal living as being a part of my life again, but you make it wonderful with your love, humor, our nephew, food, the cats Pepin and Jax and dog Toby, and the shared joys of hanging out in the basement watching Game of Thrones and eating all of the sugar in the house.

Thank you to each of you. Your messages just to let me know you are thinking of me (emojis and texts are absolutely welcomed), your fluffy cat belly fur photos, videos of other people's animals doing amusing or cute things, your smiling babies (bonus for babies + cats, thanks to my dear friend A.!), your calls to rant about your job, your career advice, the people you have connected me with who have shared my experience with cancer, poring over potential pixie cuts and creating Pinterest boards for me, coming with me to get my hair chopped, offering your emotional support day or night, offering rides to appointments, offering to share my news with others so I can take a break, and to everyone who has sent your generous gifts. Thank you, R. and D. for the awesome and delicious reminder of home with the box(!) of sausages from Kramarczuk's! Thanks to my mom for making a trip to visit me, and for sending me delicious homemade/canned tomatoes from her own garden (see photo below).
I am prepping for chemo, and so many friends and family have made it possible for me to walk into it with warm, stylish sweaters (thank you so much, Thompson twins!), several vegan and vegetarian cookbooks (thank you, Aunt B.!), an adorable fish-shaped heating pad (thank you, Aunt L.!), a gift subscription to Popsugar boxes (thank you, K.!), gorgeous and gentle face lotions and masks, and the most comfortable pajama pants ever (thank you, M.!), and cozy smartwool socks, delicious herbal tea, soothing ginger chews, and much more to round out my "chemo bag" (a huge thank you to J.!), and much more that I will be showcasing here as I post about treatment... I have an incredible community of friends and I love and adore you.

Look at these delicious tomatoes about to be made into veggie bolognese!