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. 

Two New Hairstyles (Spoiler: One is a Wig)

The time has come for my hair to go. Well, it started going on its own, or rather from the chemo. It wasn’t noticeable to others, just to me in the shower and on my pillow, and it was actually causing me some anxiety to see it there, not in clumps or anything, but also not a normal amount of everyday hair loss... so I made a last minute appointment at the wig salon.

Wig Salon, you say? Yes. JOI Wig Salon, where you sit in a proper salon chair and various wigs are brought to you based upon your stated preference, plus your skin tone and color, your style, etc. Once you select a wig, they will style it for you, cutting it shorter or however you prefer. They will also shave your head for you, if you would like. I would like, and they did.

Things I learned + highlights from my wig-procuring experience:

• You can get a prescription from your oncologist for a "full cranial prosthesis," aka wig. Some insurances cover costs or partial costs; mine does not.
• They (JOI Wig Salon) do not sell extensions (a young woman with long blond hair stopped in to inquire).
• I found it incredibly touching when another woman, likely in her 50s, came in and shared that her friends at her work at the nearby hospital all chipped in for her wig, and that they had previously done so for two other coworkers.
• Finding “your” wig is apparently similar to buying your wedding dress-- you just “know.” (NB: While I did have a wedding dress, I did not have this moment that is so often portrayed on TV so I’m kind of tongue-in-cheek here-- I have feelings about the wedding dress experience that I am happy to share offline.)  
• You also “know” when you are ready to shave your head. My stylist did not assume that I wanted to, since my pixie cut still looked so good/intact. I asked her about it, and she said, “Oh, you want to shave it now?” She looked at my face and then continued, “You know when you know.” Then she shaved it. And I did not cry, although I did feel a little emotional and it was a distinct possibility at any given time. My stylist helped when she said, “Just think like you are GI Jane."

Here’s a pic from GI Jane. It’s from a website that tells you about her workout, in case you are interested.

• My preference for a blunt-cut bang amused my stylist. “That is how people who don’t know how to cut wig bangs cut it.” LOL (She meant no insult.)
• My stylist told me that I have a very nicely shaped head! She said that she often has to do a lot of styling with the wigs to hide imperfections.
• My entire life (literally since kindergarten), I have been aware that my head is kind of large, or at least larger than others. This idea was often reinforced by J. Crew hat sizing. However, my stylist stated that my head is not large. Hey, she’s the expert! I will take it. (John also disagreed with my self assessment, and thinks that my hair was just super thick and added a lot of extra padding.)
• She also told me that I look like a Bond girl with my chosen wig.
• My chosen wig does look similar to the way I used to wear my hair (particularly after a keratin treatment), although much thinner, although that was not necessarily what I had in mind when I walked in. It turns out I just really like my hair that way (unsurprising, as I have worn it essentially the same way since kindergarten). I did try on several, just to be sure.
• My chosen wig is similar but not exact, and that’s completely okay. It would be absurd to pretend, in my opinion. I have cancer, my hair was coming out because of the chemo, so I got a wig. I am reminded of the scene from Sex and the City where Miranda is shopping for a wedding dress while talking to Carrie on the phone and says, “The jig is up.” I have cancer. The jig is up.
• Synthetic hair wigs (the kind that I got) should not be exposed to heat, and definitely should not be worn while cooking.
• Nice wigs are kind of expensive. They can get up to like $5K, but not at the place I was at (or at least none that she showed me). Still, I spent $400.
• My second new hairstyle, my shaved head, is something I am still getting accustomed to. My feelings go a little round and round over it but always land on, “I refuse to feel ashamed that I have a bald head.” So, you may see me rocking my bald head. However;
• Having a bald head means having a chilly head! So, if I am rocking my bald head, it will likely be under my cashmere beanie. Or not, I don’t know. I am still working my way through all of this, dear reader.
• John says I look like Natalie Portman’s character in “V for Vendetta.” I’ll take it.

This was probably a picture from a premiere for the movie; definitely not *from* the movie. I got it from this website. 

My bald head will be featured at another time, when I am not as exhausted. What? I'm vain. 

And so with newly shorn hair and a Bond girl wig, I begin the next chapter in my cancer adventure.

Selected quote:

“That is how people who don’t know how to cut wig bangs cut it.” -- My wig stylist

Statement Hair

My friend J. and I were talking about my hair, and she said, "Trish, you have statement hair. A pixie is a statement." It was then that I knew I would be just fine chopping it off.

I love my hair, and I was sad to think about cutting it, but please know, dear reader, that I did not cry. I was most sad about the fact that I intended to donate the 10 inches to charity, but that somehow got lost amongst the rush of appointments and decisions that needed to be made. Don't judge.

Sometimes people undergoing cancer treatments do not lose all of their hair. It depends on the type of chemo drugs they are prescribed and the duration of their treatment. I do know that I will lose my hair for certain. It will take a few weeks for it to begin, and rather than seeing clumps of hair fall out (not a fun visual, amirite?) I figured I'd get a head (ha!) start on it. I will shave it completely when that becomes a thing. Also, it will take some time to grow out once I am done with treatment, and I wanted to know how that will look. The answer is, of course, FABULOUS THANK YOU VERY MUCH.

Selected quote:

"Trish, you have statement hair. A pixie is a statement." -- J.