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!!

Chemo, then Chemo Again, then... No Chemo

Chemo
Okay! So, I had chemo a few weeks ago, and my dear friend Lisa was my chemo buddy AGAIN. That's right, she signed up twice, because that is how she rolls. She's the one who, when I first told her that I have cancer, said, "We are going to get through this. Together." That's pretty great, no? Love her! Thank you, Lisa.

She also cracks me up, and did so when, after picking me up, she said, "I was looking at last week's picture with Chemo Buddy Josh and was like, pink wigs! Way to raise the bar here, Josh!" Ha ha. But seriously this is not a Chemo Buddy competition. 😳

So pretty. #chemochic

I must let you know, chemo is tedious. Not just the infusion, because to me that actually feels a little like taking action and I like it, but having it once a week is just a really boring cycle. If you are not waiting for chemo, or having an infusion, or resting, then-- woo hoo Monday through Thursday feels pretty normal! but you still must avoid super germy people or at least apply antibacterial goop on the regular and assessing your day's activities with energy preservation in mind... I don't mean to complain but I just want to be clear here that this is... tedious. Which is why having Chemo Buddies is really amazing, because it allows me to have some social life woven in between. 

Chemo

After Lisa came my mom and my dad as Chemo Buddies... which was just incredibly special. I loved having them both here, I loved showing them around, showing them what my life is like. It was my dad's first DC trip, and we got to enjoy some monuments, a Smithsonian (Natural History Museum, naturally), and delicious Japanese (Sushi Taro-- I had udon noodles, though, since I cannot have raw fish right now). And then we got to have a very special Thanksgiving courtesy of the Vito's. There was a lot of love and gratitude going around, and it was difficult to bring them to the airport. Their absence was noticeable during the following days. Luckily, the weekend was capped with a Christmas tree and adorable Christmas hugs from our nephew. And egg nog (don't judge, I love that stuff.) 

Yes. I do look like them. 

... and then No Chemo. 

I mean, I know that I said that chemo was tedious, but I did not mean that I don't want it...

This past week, my body decided NOPE. Really, my neutrophils decided nope-- they are depleted, which was extra disappointing since it was a week and a half since my last infusion plus I have been getting the neupogen booster (they were at .820, in case you have been following along). Essentially, my body is fighting off germs so this is the result. I am pretty disappointed, though I know that delays are to be expected. I don't know what else to say except that it sucks, and that's life. (Please note that if you say that to me, it is different... so please do not. :) 

Other than delaying treatment and pushing it all back a week, what it means is that I must be extra careful for a few days while they are low (so this weekend). It is important because if I do get an infection, which is mostly monitored by me taking my temp at least twice a day, and if it is 100.5 or above I have to go to Urgent Care or the ER. I am doing what I can to avoid that. 

It is all fine, and I am feeling mostly fine-- just a little worn out. Possibly a tad frustrated. Thanks to all of the friends and loved ones who have been reaching out and sending happy mental health messages. Hugs!

Chemo is Boring but We Know How to Bring the Party

Hello, friends.
First things first: I did resume chemo last week, after my neutrophils bounced back above 1.0; they were 1.03, which means that while I was successful, I also had to begin the booster shot Neupogen (or Zarxio, for those who like knowing specific brands of cancer-related drugs). This is a "growth factor," which I guess describes the fact that it stimulates the growth of neutrophils, which are found in the bone marrow, which is why one of the most common side effects of using it is bone aches or pain (I have also learned from experience that the muscles get achy as well). While this does not sound fun, it's really just a dull ache akin to growing pains. But minus the growth, although I would not be upset if that happened... I have always hoped to push beyond 5'3." Alas.
I will now receive the booster shot for two days (it could be up to four days, depending on how low the neuts dip) post-chemo infusion, so last weekend I had to go in mid-morning both Saturday and Sunday. Once my insurance okays it, I will be able to self-administer these shots (exciting, right?!) at home, which will save an hour each day in travel, as long as I am willing to stab myself. I can do this, dear reader. I will breathe through it (also, thank you Riely for coaching me via text on this!).

Colds and Such
When I was in elementary school, my mom was taking college courses. One day she brought home an illustration from a biology class that showed the immense amount of germs released per sneeze, and how many germs were on things like doorknobs. I will say that this has really stuck with me, and I am somewhat of a germ-phobe. Imagine that, plus going through chemo and having a challenged immune system... What I am trying to tell you is that I am a lot of fun! I walk around with disinfectant wipes (lemon is a great smell, don't you agree) and anti-bacterial everything. I have even self-quarantined over coughs and sneezes. Thankfully, those enduring living with me respond kindly by getting set up with amoxicillin. Also thankfully, I am getting Zarxio and have a better shot (pun intended) at fending off these germs.

Holiday Prep
This week, in preparation for the thanksgiving holiday, I had my labs today (the booster worked!), and chemo tomorrow with Lisa returning as my chemo buddy. Next week, labs will be moved to Tuesday, and chemo to Wednesday, with-- wait for it-- my mom AND my dad as chemo buddies! This is the part where you fall out of your chair because my parents have been divorced since I was two years old. How freaking amazing is that?! They are traveling here to be with me for the holiday. It is incredible, super sweet, and I will be honest when I say I was a little surprised (they were considering just surprising me by having my dad arrive without prior knowledge... thank you for rethinking that!). It isn't that they do not get along-- thankfully, they do-- it's just really touching. I am really looking forward to showing my dad around-- he has never been to DC!
Also, so much gratitude and love to Kelley and David for opening their home to my family for the holiday. You are incredible people.

Chemo Buddy Feature: Josh
Last week's chemo buddy was my friend Josh. I frequently call him Joshy, or pumpkin, but I have known him for more than a decade, so I get to do that. Joshy and I met when we moved into a group house on Euclid St. NW in 2006; I remember when he first walked up to the house and shooed the birds away, emphatically stating, "I hate birds. Ugh." Even though I do not hate birds, I do love when people have strong feelings about everyday things. It was the start of a beautiful friendship, even though the whole group-house thing really imploded.
Josh signed up as chemo buddy and immediately purchased these amazing pink wigs for the occasion. I will be frank, chemo is boring (this whole chemo regimen is pure tedium), but this was super fun, especially when paired with dance party music. Love you, pumpkin!

Don't worry, the pink wig will most certainly make another appearance!

Camp Chemo Update #4: Truly Mostly Normal

Yesterday was Chemo #4 of 16, also known as infusion #1 of Cycle 2 of 4 of Phase I, but you don't really need to keep track of all of that. What's great is that I feel great; not even "mostly normal" but actually normal (sans hair). The infusion itself was my first without any crampy discomfort at all-- a first! (That turned out to be due to a uterine fibroid and not a side effect of the chemo, if you read my last blog post)
There was another younger woman at chemo that I had not seen before (I heard her say she is 35). We are seated fairly close together in the treatment room, so I was able to derive from her conversations that she is on the exact same treatment plan and clinical trial as me (another triple negative person!), and that this was her final infusion. Her chemo buddy was her mother, and I overheard her say something to the effect of it being a breeze compared to the Phase I weekly chemos (Yessssssss!) coming every three weeks was "basically nothing," and she was not having any major reactions to the Phase II drugs of adriamycin and cytoxan.
As she finished her infusion and took happy celebratory photos with the oncology nurse (Nurse S.) before heading out, I started to tear up a bit. I was so happy for her! and she really seemed as though she was in a good mental and physical space. We had not been introduced, but I congratulated her and wished her good luck with her upcoming surgery. I will be her in the not-too-distant future-- this felt so hopeful to think about and to see IRL. Tangible. Doable.
I was also possibly a bit... not jealous, I don't feel like that is the right word, but something in that direction. I want to be done, too. Alas. One step at a time.

Chemo Buddy Feature: John!
John attended camp chemo with me yesterday. He was my first chemo buddy, and is the pinch hitter for any chemo shift (yes I have shifted these out, I am an organizer after all) unclaimed by other friends and family. He is my hero team partner and the loml. He makes me laugh. He makes me tea and vegan lunches and dinners and is ever-vigil about my water intake. Last night he made me stay up too late watching the Astros/Yankees game (in reality, I was wired from steroids so would have been up anyway). He tells me that he genuinely thinks I am hot with a shaved head, and I believe him (and then I tease him that he could use a haircut, too. Which is not untrue.). He is with me wholeheartedly in this strange time of being the most EXTRA I have ever been. While taking my vitals yesterday, I commented to Nurse S. that my heart rate had been up, and without skipping a beat she said, "Well, you are sitting next to that guy, so I am not surprised." We laughed, and then he let me take my Benadryl nap while he ran to True Food Kitchen for lunch (thank you for the gift card, Tracy!!).
John is always up for an adventure, so we are going to hike this afternoon.
I am obviously very much lucky in love and also just plain lucky. Thank you, loml.

Me, tres chic on route to Camp Chemo. 

John and me at Camp Chemo. I'm not sure this showcases his need for a haircut, but just trust me.

Selected Quote:

"Well, you are sitting next to that guy, so I am not surprised." -- Nurse S. 

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!