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.

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. 

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!

Preparing for Life with Chemo

With my treatment plan now set (starting on Friday!), I have been spending most of my time prepping for life with chemo. I thought I would share with you some of these, in case you are interested in what I have been up to since blasting my news to the world.

My preparation has been guided by what I have curated from Chemo Class (an actual class one is required to attend in order to begin chemo, where you learn about how toxic you are after being infused with powerful drugs), by various booklets, books, and (trusted) websites, from survivor friends' blogs (thank you lady K.!), and from my own personal preferences.

Research all of the things.
When I start something new, I tend to fully immerse myself. I want to know everything about the topic. (Yes, it can cause overwhelm.) In this case, it is helping me to accept that I have cancer and to identify as someone who is now doing the things that people who have cancer must do. This includes:

• Buy all of the books (and even a DVD!).
• Attend Chemo Class (as previously mentioned).
• Talk to all of the people. 
• What was their experience like? What resources did they find helpful? How did it impact their daily lives? Their professional lives? How does it impact them today? 
•  A huge amount of gratitude for the survivor friends who have contacted me and offered themselves as resources, and to those with friends who have connected me to their survivor friends. I am (somewhat slowly) reaching out, and I so appreciate all of these incredible connections.

Have medical port put in.

Did you know that I have already had a minor surgery? Yes, I had to have a medical port, aka chemo port, aka Power Port (actual brand name) inserted into my chest. This was my first surgery EVER, and thankfully it was not that big of a deal overall. Dr. V. performed the surgery, thus formalizing our professional relationship. It was explained to me (something) like this: "I will be inserting this plastic device into your chest, under your clavicle. I will make an incision, then make room for it, and check the vein nearby to ensure that it can be used. I will also check your heart and your lungs while I have you open. The operation will take about 30 minutes. You will have some anesthesia so you will be out for the surgery. You will not be able to drive afterwards." I am obviously paraphrasing, but these were the major points. In addition to having my first surgery, I also was wheeled out of the hospital in a wheelchair-- another first (thinking of you, Sime). 

This device (pictured below) is for the chemo infusions; they will use this instead of arm veins. It is a small plastic piece with an opaque, softer plastic middle, which is where needles/IVs will be inserted each time. If you see me IRL, feel free to ask to view it; I am a small person so it is pretty visible, and I have a small surgical incision scar located right above it. At this point in post-surgery healing, I barely notice that it is there, and I can even easily do yoga postures that include chest-openers.

My heart and lungs looked great, by the way.

Picture of a (pretty purple) Power Port. 

Tests, tests, tests.

So many tests. 

Breast MRI: Helpful tool for gathering further information about the tumor and its size. 

This was by far the most undignified test of them all, as I went in thinking, "Oh, MRI NBD I just lay down and then inserted into a tube and then listen to a lot of noises and try to breathe/not panic." Mostly accurate except that I had to lie down in a prone position, with breasts hanging down in between two slots. (Hey, sorry but I did warn in my first post that I would be talking about breasts here.) It was so rude. The indignities. And that was my Saturday morning! 

CT & Bone Scans: Fairly straightforward, simply drink chalky, berry-flavored barium drink at proper time (thanks to John I got this mostly accurate). Arrive at bone scan location, receive injection of radiation, promise to return in three hours. Drive to the next location, receive CT scan. Eat some lunch, return to bone scan place for (you guessed it) my bone scan. These tests were necessary to determine if the cancer had spread to a second location (verdict: it has not, which is a huge win). 

ECHO: From WebMd: "An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart." My test was the Doppler. The technician, Todd, was really great and I like that he explained everything to me. He told me that I have a good heart and that the test results would likely reflect that (they did). He also made a few jokes that were funny, even though I knew he uses them on everyone. "Now I'm going to take a look at your liver to see what's left." (He used to work near a college campus and this one apparently freaked out all of the college students.) He also gave me an ultrasound picture of my heart and said, "Here's a picture of your heart, so now you have proof if anyone accuses you of not having one." All delivered deadpan, which is the best humor, in my opinion. Thank you, Todd! 

I have a heart! And it is a good one. (Note: this is NOT my uterus.)

ECG: From WebMd: A doctor may suggest "an electrocardiogram -- also called an EKG or ECG -- to check for signs of heart disease. It's a test that records the electrical activity of your ticker through small electrode patches that a technician attaches to the skin of your chest, arms, and legs." It literally took longer to set up than to administer this test. It turns out I do have a very good heart; my resting heart rate is low (high 50s), although now that I think back on it, Researcher S. did not actually tell me the rate that day. Anyway, she did show me the graph and it all seemed lovely. (I am not a trained scientist, and I am aware that my descriptions here betray this, and I am okay with that.) 

Genetic. I spit kind of a lot of saliva into a vial that they sent away to a lab. I was told that insurance will definitely cover my test on account of me being so young and having cancer. The results came back early this week and indicated that, as far as they know with the research at this point in time, this is not an inherited gene. Therefore there is not a concern for my mother, sister, aunts, cousins, etc. to be tested, but they should keep up with mammograms and should speak with their obgyns. 

Make hair decisions.  

As you are aware, I've chopped 10 inches off my hair and currently have a pixie. I got to this decision quickly, but I had an in-between bob for a few days that I just could not embrace, no matter how many times I compared it to Jackie O. 

Other decisions that needed to be made included whether or not to attempt to save my hair via cold cap technology. If you have not heard of this, the gist is that you have a cap that is kept at a certain temperature that is placed over your head/hair for a bit before chemo, during chemo, and for a few hours following chemo. The upkeep is not light, as you have to switch out the cap for a new cold one every 30 minutes, as it cannot drop below that certain specific temperature. I decided to forgo this option due to its high maintenance, the fact that it is not covered by insurance, and it's success rate is around 50%. Seems like a great deal of trouble for it to not work out. Meh. Here is more info on one kind of cold cap, if you are interested in learning more. 

Thus, I am going for a wig (or two), with some trusty hats and beautiful scarves as additional options. My lovely mermaid stylist, Trinity, has spearheaded (ha, so many head puns) the effort to procure a wig and to style it for me. She has been my friend and stylist for about a decade, and I am so lucky she is on this case. In terms of going and being bald, I was told that it will take a few weeks before I notice anything (and people, I have a LOT of thick hair), so we shall see when it actually becomes unsightly. I am hopeful that Phase II of chemo will be lighter and regrowth will begin. If anyone would like to start a pool for the date I will need to shave it, let me know (being somewhat serious here, because I need to laugh at cancer on occasion. For me, it is appropriate)!

Buy anti-bacterial and disinfectant everything. 

Also known as "spend all of your money at Target." I purchased disinfectant wipes, anti-bacterial soaps for every purse and bag, tons of bathroom cleaners; you name it, I have now disinfected it. One of the medical professionals that I am in touch with regularly (I will refer to her as Researcher S.) said, "You know those people that wipe down their grocery carts and put anti-bacterial soap on all of the time? That's you now." So, okay cool. I can do that. 

Salon manicure/pedicure.

Well this is clearly optional, but you might be aware that I am a very major fan of having my nails done, preferably with a gel manicure from a salon. I have learned that I must give up any nail salon visits during chemo treatment, so as to avoid infection. I can, however, paint my nails with regular polish, and they even recommended the Sally Hansen Hard as Nails line. It will help keep my nails strong (thank you J. for the nail polish!).

Fill prescriptions. 

So far there are just three prescriptions; one for a lidocaine cream to be applied to the site of the chemo port about half an hour before going to my chemo appointment, and two anti-nausea medications (compazine to start with, ativan if more is needed). 

I also needed to buy medications for gastrointestinal concerns, which I prefer to preempt as much as possible by eating healthy, using known natural options (think: prune juice), and supplements. 

Regarding supplements, I have been okayed for the use of: a Vitamin B complex, Vitamin D, multivitamin, turmeric, and L-glutamine (may help prevent neuropathy, or numbness in fingers and toes that is a potential long-lasting side effect of chemo).

Prepare batches of food to freeze.
My sweet and loving husband bought me an Instant Pot, which if you are not aware, is a device that is essentially a kitchen swiss army knife. Namely, it cooks things super fast, which I very much appreciate. I have successfully made a batch of veggie Bolognese (featured in this previous post), which I put into smaller containers to freeze for use on days when I am not interested in cooking (lo, this turns out to be most days, and I have not yet begun treatment). UPDATE: I somehow failed to mention earlier the batch of pesto that my mom made me while she visited recently, which is actually better than the veggie Bolognese. Thank you, Mom!

I also learned in Chemo Class that I should avoid eating my favorite foods during treatment, as it will change my relationship to those foods. This presents a kind of dilemma, right? So I am to eat the foods I do not like? No. 

I will keep you posted, dear reader.

Visit the dentist.
Due to working on three campaigns in the past year, I have to fess up that I was a few months past my time for my dental checkup and cleaning, and it turns out this is pretty critical thing to have done before starting chemo. This is because chemo goes after the rapidly-dividing cells in your body and does not differentiate between the ones you need (mouth, hair, nails) and the ones you are working to eradicate (cancer cells). Therefore mouth health is now quite elevated, with avoidance of bacteria as a primary goal.
Given that we just moved, I had to find a new dentist; and given that this has been moving very quickly, I felt some pressure to make it happen right away. Luckily, my in-laws had a great recommendation very close by who also took our insurance and was able to get me in that week (albeit at 7:30am. I did not complain, however). I also count myself lucky because I have fairly amazing teeth and I was thrilled to announce to everyone that while it may be true that I have cancer, I sure as hell do not have any cavities!

Prepare my chemo bag.
Thank amazing family and friends, I am heading into my first chemo appointment incredibly prepared. I have cozy clothing, an incredibly soft comforter, gentle lotion, lip balm, warm socks, soothing ginger chews and peppermint tea, and a few current fashion magazines. I am going to show up to this appointment like the proud newbie cancer patient that I am, fully armed with comfort and the love and support of all of you. Thank you. 🙏

This is definitely going to keep me warm in the chilly chemo room!