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.

No Camp Chemo Today

I want to start by reassuring you, lest you feel disappointed for/with me, that this is all part of the treatment process. To have a delay in chemo is okay and often expected. For those who enjoy the specifics, my neutrophil level was .800 (must be 1.00 to proceed with chemo. Last week was 1.20).
I have been referencing my neutrophils for weeks, so you may already know that I would necessarily need to hold off on a week of chemo once they fell. This is the week that has happened, and while no doctor or medical professional has outright told me how amazing I am for having held off nearly six weeks without this happening, dear reader, I read between the lines (heh) and assume that is why-- I am amazing. It has been a great sign that I came into this experience with a healthy amount of white blood cell levels that withstood chemotherapy (and again, this is expected to happen no matter what) for quite awhile. I am a healthy sick person!
I have also mentioned that I was told that when this happens, it is time for the booster shot, so I was surprised yesterday when I got the call from Oncologist F.'s office to say that she would like to wait a week, do my labs, and see if I have rebounded. I suspect that they think a week off for me will indeed cause the neuts to bounce back. If not, I was told they may hold off again another week, rather than introducing the booster shot. Or, they might choose to proceed with chemo, but at a lower dosage. It depends on what Onc F. thinks is best at the time, and I have an office visit with her already on my schedule for next Thursday. For what it's worth, I stated that I would "not be keen" on delaying my treatment TWO weeks. The kind nurse on the line said something to the effect of: we aren't either, but we are also not keen on pumping you full of unnecessary drugs. FAIR.
So today I have the day off. How will I enjoy it?

I will drink all the coffee. (Actually just this one cup.)

I will enjoy this amazing cup of coffee. While I am not prohibited entirely from drinking delicious coffee (if you know me you know I love coffee, and I especially love a really good latte, particularly those you might find at Dogwood or Rustica in Minnesota), I am not supposed to drink it 48 hours before an infusion, the day of an infusion, and for 48 hours afterwards, which when you are receiving weekly infusions is pretty much the whole week. Also it dehydrates, and I have a pretty strong need to do the opposite at all times. 

Chemo Buddy Feature: Megan P.

This weekend my good friend Megan P. is here from Minnesota to be my Chemo Buddy, so I do feel some disappointment that she will miss the experience of sitting next to me during an infusion (aka my weekly Benadryl high-and-then-slump) and being bloated from the steroids and chemo. I am sure we will find plenty of other things to do, and that we will certainly get our fair share of cancer talk in; I am mostly excited to have her see where we are living, and to just catch up generally. The fact that we have massages scheduled for tomorrow is pretty fabulous as well. 

Megan and I have been friends since our undergraduate days at the University of Minnesota, Morris, which if you are not aware is aka the Harvard of the midwest, the "smart" school of the four U of MNs, etc. (you can punch me in the face later). It is a small public liberal art school in the middle of corn fields where you can oft find budding liberal activists. Megan is and always was a leader, and I got to know her from the Women's Resource Center (the women's activist group on campus). After college, we worked together for a while at an abortion clinic as peer educators, we worked on campaigns, and there were years where I was a de facto third roommate/couch crasher at Al's and her apartment in St. Paul. I repaid some of that debt by putting her up in D.C. when I lived here the first time. Together we have enjoyed countless dinners, wine, the Klituation dance party, and the highs and lows of our love lives and careers (we were together on election night 2004 AND 2016...). She is now the executive director of an amazing nonprofit called Gender Justice, and I need to get dressed now so I can pick her up from the Metro station. 💕

Update: Here she is, and we took a really nice fall walk today!

Camp Chemo Update #3: Third Time is Not Necessarily a Charm

Yesterday was my third chemo infusion. It was a little unfriendly to me, as I had a brief reaction to the Taxol, and we had to stop it for a few minutes before doing a slow ramp back up. My face had suddenly gotten very hot, and Chemo Buddy Lisa said it looked bright red. My chest felt like something was sitting on it, and I felt a little panicky. Nurse S. quickly came over to stop the infusion and sit with me as it subsided. Eh. Life of chemo.

I also had them add a flu shot for me. This, plus not getting enough to eat before going to chemo, was not the smartest of choices, I fully admit (I had a cereal bar and some trail mix... 😳  ).
Yes, I know better than that, and no, I will not do it again. After chemo, Lisa and I got some lunch at District Dumpling, which is delicious, but I made another mistake by getting the fried version. Your food matters, let me tell you. Lisa then drove me home, and as the night wore on I felt increasingly uncomfortable and dehydrated. My stomach ached, my hips(?) ached, to the point of not being able to concentrate on the show I was watching (Orphan Black, now that I have finished The Americans Season 5). Finally I gave in and got physically ill, which finally turned the whole unpleasant ordeal around after about two hours of the unpleasantness. I took some anti-nausea meds, drank some water, and crashed before 8:00 pm.

So apparently cancer is not all bikes and hikes, dear reader. That's okay.

In fact, I had been having semi-crazy thoughts such as, "This is going so well. Is it even working?!" A former colleague of mine who has been through it before said, "You are allowed to look and feel great. Just keep kicking ass!" And that really helped, you know? I had not thought I was actually feeling guilty about feeling so good, but there's a trace of that, sure. So now that I had a moment, does that mean I'm a "real" cancer patient? (Rhetorical questions, no need to respond.)

Today is much, much better. Aches and nausea are totally gone. I will take Toby the dog for a walk and check my energy for a run or something later. John and my BIL, D., are biking the first day of the MS150 in Pennsylvania today. I woke up early (that happens when you are asleep by 8:00pm) so I got to see them head out, and John made me a bowl of oatmeal ("Perfect consistency," he said as he proudly showed me the oats on a spoon... he has high oat cooking standards. It shouldn't surprise you, if you know him). Sorry that I do not have a pic of that. I do, however, have a lovely photo of Chemo Buddy Lisa and me from yesterday's infusion (where she lovingly and mercilessly laughed at me as the Benadryl set in).

Chemo Buddy Feature: Lisa! 
Lisa and I met while working at the NEA, so that means we have nine years of friendship under our belt. When I told Lisa that I have cancer, she immediately said, "WE are going to get through this." Meaning she will be right there with me. Which is an incredible thing to hear.
The next time I saw her, about a week or so later for dinner, she came armed with a giant gift bag filled to the brim with a comfy and stylish tunic (Lisa is known for her chic style), socks, an entire Sephora store's worth of hydrating facial masks, and a great book called Pretty Sick: The Beauty Guide for Women with Cancer by Caitlin M. Kiernan. I love beauty products (I am a proud Sephora Rouge member) and this book was very informative about what to consider purchasing and she offers up several suggestions at different price points, and also has a lot of great advice from some of her famous friends who have had cancer. (TL;DR The name of the game is to moisturize). If you know someone else who has cancer, this could be a great gift, and you can order it here.

Lisa is an incredible woman and I am lucky to count her as one of my BFFs.

Lisa and I brought our pixie-cut chic fabulousness yesterday. 

Here's the book!

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. 

What's Up (Some Tough News)

Over the past couple of weeks, I have slowly been sharing my tough news with individual family members and friends. It can be exhausting, so please forgive me if this is how you are learning that I was recently diagnosed with breast cancer.

If you know me, you likely are aware that writing is my best medium for processing, so I have decided to join the blogging ranks as a way to do so and also to share information (both useful and useless, to be sure) about my breast cancer experiences. Please consider yourself warned that I will be talking about anatomy (specifically, breasts). 

If you know me, you might also be aware that I do not do "average," so naturally I would have a special kind, or subtype, of cancer that is known as "triple negative." Triple negative is deceptive in that it makes you think (if you don't know any better) that it is a good thing. "Woo-hoo! Triple! Negative! On a medical test result!" But now I know better so I can share with you, dear reader, that it is perhaps not a good thing; at best, a mixed bag.  

Before I go into further detail about my diagnosis (which I will do in my next post), I do want to assure you that a) I have excellent doctors, and b) they are very, very positive about my treatment being a success. (Quote one doc, "It won't be the Fall that you had in mind.") In fact, it has been a small ego boost to so consistently hear about how young and healthy I am. (I am working on getting them to add "fabulous" to this list.) They have also assured me that I will be able to live a mostly normal* life. My surgeon, Dr. V., gave me several examples of patients that he is treating who also have triple negative breast cancer and who are active and working. I have been told that treatment has come so far in recent years that they are able to largely eliminate much of those well-known side-effects such as nausea, fatigue, and the need to avoid crowds for fear of germs. Dr. V. shared with us that one of his patients is a working kindergarten teacher (think of that petri dish of germs!). 

As many of you are also aware, we recently moved (back) to the D.C. area. I had been working as a political consultant in Minnesota, and was deep in the process of a job search here. I have enjoyed reconnecting with old friends and colleagues all summer, a process which I put on hold initially after learning that I would have several tests to get through before we had a full picture of my health status and treatment plan. I still have many people with whom I have not had the chance to reconnect, and I hope that we can plan something soon. 

In terms of my job search, I do plan to shift course a little and to seek project/contract or part-time work rather than full-time with an organization, at least through the end of 2017. Flexible scheduling will be helpful, as I will have chemo each Friday until mid-December, when I will move to a schedule of just once every 3 weeks. I am incredibly lucky to be married to a member of a labor union and thus I have excellent health insurance benefits (I will definitely be writing more about health care in later posts). Please note that I can and must work. Medical professionals have encouraged it-- frankly it is important for mental well-being to remain an active member of society and to maintain a mostly normal life during this horribly abnormal time.

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.

*Please note that I use the word "normal" here to reference my personal normal way of living. This word is often loaded with default-laden meanings and interpretations, and I in no way am leaning into that; simply a way to describe that I will be functioning mostly or almost-nearly at my regular levels.

Selected quote:

"It won't be the Fall that you had in mind." -- Dr. H.

#whatimreading