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.

How Are You? Just Fine, Thanks!

How are you?
There is so much to this question for me-- obviously now, but I have actually always struggled with this greeting.
I don't really know why. I think I have always been a self-reflector (one who self-reflects?), so the question, to me, reads deeper than it should.
I want to tell you of all the assorted ways that I feel, of how I am truly doing. I have learned to embrace this awkwardness about me, but it took a long time to successfully supply the rote and expected response of, "Great, thanks! How are you?"
I do not attribute any sort of callousness to this greeting, though I think there are better ones out there, ones that won't cause people like me (over-thinkers?) to pause, mentally review their life story in its current iteration, and then blather on about how I take the dog, Toby, for walks daily unless it is too cold or possibly rainy, which it has indeed been, and then a barrage of medical updates, also I like when I see this white deer on my walks, oh and I am definitely terrified of catching the flu this season, and I have been watching the show "Riverdale" and it is actually not that bad!, I have had some contract work so that's super cool, oh and also I am rereading A Wrinkle in Time before it hits the theaters... etc. So you get the point, yeah? More odd is that I am not otherwise an over-sharer.
So that was a really long way to get to an update about how I am doing. I am fine, thanks! How are you?

I have two chemo infusions left, scheduled for February 16th and March 7th. This new chemo (adriamycin & cytoxan) is a great deal suckier for me than the previous stuff (taxol & carboplatin). I may not have shared with you already that there is a nickname for adriamycin... the Red Devil. Named so for its color (yep, it really is red) and for the toll it takes on patients. Also because it must be administered very carefully so as not to damage skin or veins-- my nurse actually sits and pushes the red devil in via giant syringe. YEAH. It takes about five minutes total which makes me think of the phrase, "A moment on the lips, a lifetime on the hips," but reimagined as, "A moment in the port, a week on the couch." And a lifetime of no more cancer, right?
Thankfully there are meds to counteract the nausea, which is helpful-- but really what it means for me is major food aversion. Everything sounds disgusting for at least a week. Some advice I received from someone in the Young Survivors Coalition (this is an org for people who have had a breast cancer diagnosis while they were young) was that when the brain and the stomach agree on a food, you eat it. This has resulted in some interesting dinners, such as tater tots (just tater tots, nothing else), just fruit or fruit snacks, just a sweet potato. I have even had some meat, just because it did not repulse me. So we will get through this next month and reconfigure the food situation once more.
For my next infusion, I have called in reinforcements: my mom is coming to visit again!

One more update that I am even less happy to report is that I had to spend a couple nights in the hospital last week for neutropenic fever. LE SIGH. Please do not worry, because it was not something serious. But it could have been, so they keep you for a few days, no matter what. Like cancer jail.
A neutropenic fever means low neutrophils plus a fever. Very low neuts, as they were at .2. My fever was low grade (100.6 at its highest), but they tell you to come in if it is above 100.4. I first called the on-call oncologist, who said to take a Tylenol (you are not supposed to do this unless explicitly told-- they do not want you to mask a fever), go to sleep, and if it spikes again in the night, to come in. It did and we did, at 3:00am (NATCH, because who goes to the ER at a normal hour?). Long story short, they transported me to the hospital, gave me strong antibiotics, and observed the hell out of me. After many a test, they could not find the source of my fever, and really it could just have been my own regular bacteria causing it since my immune system was compromised. My fever went down and stayed down right away, and once my neuts got back up to a safer level (1.4), they let me go. I disliked this entire experience, but was super grateful for John staying the night each night, and for the amazing medical personnel at every step of the way.
Side note: Who are these people with these insane jobs? They work ridiculously long hours and see some horrifying sh&* and I just do not understand it. My EMT works 24 hour shifts! And still volunteers as a volunteer firefighter/EMT on the side! Just... no. But thank you, thank you, thank you, to those who do this work.

Tomorrow I have my first appointment with my plastic surgeon.

Cool story, Hansel.

I asked for a sweet potato, and I got a sweet potato. Thanks, John!

I can relate.

Neutrophils are Working Hard

I have to guess that with all the flu and other stuff going around, my neutrophils are working hard to keep me healthy-- and thus they are depleted. So no chemo today!
Not ideal.
Cannot be helped.
Try again next week.

 

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!

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

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!

I am the Neutrophil Queen (& WTH is Immunotherapy Anyway)

This week's labs (CBC, or complete Blood Count) report came back from this morning's blood draw, and my neutrophil count actually increased! I am up to a 1.89 from a 1.68. This is surprising because the chemo drugs that I am taking (Taxol and Carbo) are supposed to guarantee a drop in neutrophils (which are a type-- one of four-- of white blood cell, and help prevent infection. Infection is not a good thing for me.). Since the chemo wipes cells out indiscriminately, bad or good, because it cannot differentiate between them, it is expected that they will inevitably drop. [I am not a medical professional and so I know I am likely missing important details but hopefully am catching the gist... please bear with me if you are more knowledgable than I am.]

Since my counts are still above 1.5, chemo tomorrow is a go. If they had dropped, I would have had my chemo pushed back a week and would have instead started a neutrophil booster. If you read my earlier post about this, a possible side effect from the booster is bone pain (or ache). Luckily, since I do not have to have the booster this week, that means one less booster overall during the course of my treatment. It is, however, inevitable that I will have the neutrophil booster. It's okay. It's going to be all right.

Since I am going to have chemo tomorrow, and it will be the third week, that means I will also receive immunotherapy (pembro or Keytruda) or the saline solution placebo, as part of the clinical therapy trial I am participating in. Here is a review of immunotherapy and my trial:
It is a 2 to 1 chance that I am receiving immunotherapy. My trial is in Phase 3, which means it has had positive results in its first two phases. My non-medical explanation of immunotherapy is as follows: immunotherapy is some of the most groundbreaking research in cancer treatment in recent history, and is blowing researchers and the medical community away with its results. It works with the body's immune system to identify, target, and kill cancer cells. My immunotherapy is the type that works with the immune checkpoint inhibitors, and has already been approved for other cancers such as melanoma (and a few others). Former President Jimmy Carter reportedly was treated by the immunotherapy that I might be receiving. The really kickass thing for me is that while Triple Negative Breast Cancer makes it so that there are some types of treatments (namely, hormonal) that do not work for me, immunotherapy puts a big one back on the table.

Here is more about immunotherapy if you are interested.

So, How Was Camp Chemo?

Dear friends & family,
My first day of Camp Chemo was pretty breezy, and while I can't say that I would have chosen this camp of my own free will, the people are pretty nice, and they give you a fairly comfortable chair to use during your stay. There is a kitchenette, a TV that was unfortunately turned on during the last hour (now I can watch my stories), and wifi. Plus the added benefit of starting treatment that will get rid of this cancer.
Thank you for all of your thoughtful texts, Snapchats, FB messages, etc. It definitely helped brighten this big day by knowing you are supporting me. 😍

My morning began very smoothly, always a plus:

• Good night's sleep ✅
• Wake up on first alarm ✅
• Shower/get ready ✅
• Light breakfast (my standard warm water with lemon, smoothie, matcha tea) ✅
• Remembered to apply lidocaine cream to Power Port location ✅
• Only slightly overpacked my backpack with comfort items, laptop, books, and magazines ✅
• Arrive on time, with five minutes to spare ✅

Since it was my first day, I was informed that it would take a little longer, so they could assess whether or not I have allergies to one of the drugs called Taxol (I do not). I met the two nurses (Sofia and Jennifer), met with Researcher S., met with the Physicians's Assistant (PA) J., and another woman whose name I cannot remember but brought me a tablet with some surveys that I needed to complete for participation in the clinical trial.
I also had some additional blood drawn for mystery reasons (also part of the clinical trial, and is just a fact of life. The nurses don't know what it is for, either), my vitals checked, and completed a biopsychosocial assessment (just a Likert scale of how I am doing in terms of well-being, quality of life, anxiety, depression, pain, etc.). I feel mostly great, in case you are wondering.

Researcher S. stopped by to ask if I had brought my anti-nausea medications, and to say that I should not try to push through feelings of nausea or pain. She added, "Not that I think that you are one of those people," which shows that she does not know me at all, or is a great psychological device for getting "those people" to agree that they will not try to push through and will in fact take those medications when the need arises.

I got to use my Power Port for the first time! We began with a saline solution, then 30 minutes of the Pembro (immunotherapy drug) OR placebo saline solution LET US ALL TAKE A MOMENT TO HOPE/PRAY/SEND GOOD VIBES THAT IT IS THE PEMBRO THANK YOU, some "pre-meds" that included Benadryl and steroids in preparation for the Taxol, which was administered in a ramping-up fashion taking a little over an hour that we will not need to do in future appointments given that I am not allergic, and capping it off with Carbo for 30 minutes and one final saline solution flush.

This is a double-blind study, so I will never know whether or not I am one of the lucky recipients. It is a 2:1 chance that I will, though, so I have some okay odds.

Three or four hours later, I am feeling mostly normal. I had a snooze with Jax, one of the kitties I live with, on my stomach (Benadryl is the culprit for fatigue here), I took the dog (Toby) for a walk in this most gorgeous fall weather, and now it is time for dinner. I am told that it may be tougher on day three or four, so we will cross that bridge when we get there.

Here is a picture of Jax and me taken a few weeks ago. He loves to snuggle. Ignore my bedhead.

First Chemotherapy

Me, receiving chemo IRL:

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!