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.

One Chemo Cycle is DONE & Other Celebrations

Maybe you share my love of the to-do list, and the satisfaction that comes with crossing sh*% off of it. Today marks the official first item completed from my treatment list: that's right, Chemo Cycle 1 (of 4, of Phase I of II, don't be confused and yes there is a quiz just kidding there is not) is DONE, in the books, over! Tomorrow I start the second cycle. I am also celebrating the fact that I AM having chemo tomorrow-- my labs came back from this morning's blood work, and my neutrophils are holding! (John will be my Chemo Buddy.)
The end of each cycle also means a provider office visit, and today I met with Nurse Practitioner J. plus Researcher S. It is mostly a physical exam, they check my mass, and I get to tell them all about my experiences and side effects and ask questions.
Today I asked about fibroids, because I realized that after my CT Scan I was told that I have one, which I promptly forgot about once I heard the words "not cancer." After last weekend's discomfort, however, I spoke with my obgyn, who said my symptoms sounded like a uterine fibroid, and it all clicked! I sound excited about this because I am-- what it means is that the negative side effects I had after my chemo treatment on Friday were not due to the actual chemo itself, but instead to the fibroid. It may also be the case that the chemo exacerbates the fibroid, which is not great, but I am genuinely happy that I am tolerating the chemo well. This means the only side effects have been some fatigue and a headache here and there (okay plus hair loss).
Having a uterine fibroid is not a joyous situation, of course. In case you don't know much about it, it is a mass (not cancer! Or rarely is, and mine is not.) and often goes away on its own, but if you start experiencing noticeable symptoms (like me), you should let your obgyn know, and then they talk about different ways to get rid of it that 1) sound invasive, and 2) I cannot do in the midst of receiving chemo. Essentially, my symptoms are like PMS x 10. Or something. (If talking about menstrual blood makes you uncomfortable, you can stop reading now. #sorrynotsorry)
My symptoms actually began in early August, when I had an astonishingly heavy period. I refer to it as the Red Alert, and once I was diagnosed with breast cancer, I guessed that the two were somehow linked (hormones and such). Clearly, if you have the Red Alert, something in your body is unhappy. Then, I went on a run last week, and all was well, but the next day I started another run, and my uterus felt tender/hurty. Annoying, since I had the energy for that run. Then... Red Alert, which today's lab work confirmed, as I am a little anemic. I'll hit the spinach extra hard this week.
While at chemo, I had a strange reaction (you can read about it here), which Nurse S. said was not related to the chemo I was receiving, these were not side effects related to Taxol or Carbo; and then I was fairly crampy and Red Alerty all weekend. This was all a little frightening, since it was not making sense! This is (again) why I am glad to know that this is about the fibroid, not the chemo... anyway. I think you get the point. If you have questions, or like me, enjoy hearing about the experience of having a uterus (if you know me, you know that I do. I have birth doula experience, I have worked in abortion clinics, plus prenatal yoga teacher and other related trainings, etc.), feel free to message me offline!
If you have had the thought while reading this post that it appears that my reproductive organs are waging an all-out assault on me, you are not alone. 

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

The Awkward Newbie (My First Lab)

This morning I go in for labs, which is the blood work that needs to be done the morning prior to receiving each chemo infusion. These lab tests monitor my complete blood count (CBC); for white blood cells (WBC), red blood cells (RBC), and platelets; as well as my metabolic panel, which measures kidney and liver function and electrolyte levels.
I have had one lab experience so far, when I went in last week as a prerequisite to admission to the immunotherapy clinical trial. Allow me to regale you with my awkward newbie tale:

Arrive to Lab location with more than five minutes to spare (always a win to arrive early! Avoiding unnecessary anxiety is important.) Check in with very nice and upbeat front desk human, who clearly knows everyone as he greets several individual patients by name, and asks me if this is my first time being there. "Yes," I say, smiling. I sign in and pay my co-pay.
He directs me where to sign in and asks me to take a seat and wait for my name to be called. As a newbie, I head directly to a chair next to a boombox. I love music. How nice.
Very quickly I remember that boomboxes have terrible sound quality. I then realize that all of the other people waiting to be called for their labs have chosen chairs that are nowhere near this cacophony. I think, ah, yes, wise pros... I consider moving seats but decide to wait it out. I am sure I will be called soon.
Twenty minutes go by, people arrive, sign in, and are called. They depart. I continue to wait to hear my name. Employees walk by with their lunches that smell delicious.
Suddenly I realize this boombox has begun to blast Clapton's "Tears in Heaven." I freeze, wondering if I am hearing correctly. (Of course I am, because music.) I then look around wild-eyed to see if anyone else has noticed, but no one meets my gaze. I am awkward so I laugh a little to myself. Eric continues to sing, "Because I know, there'll be no more... tears in heaven."
Fight or flight starts to set in, and when the next person is called and vacates her seat at the end of the row, I bolt for it. It is the farthest away from the bleating boombox. I text John, "Poor soundtrack choices here."
"PATRICIA WELT." A woman, presumably a nurse, is in the entryway.
I say, "Wel-TEE." She says something that sounds closer to this and everyone in the waiting room stares as I bebop my way over to her. (Note: I do understand why my last name is mispronounced and I am not angry about it, but I will correct you if I know we are going to be interacting more than once.) We walk to her station, she asks me my name and birthdate, punches keys on her keyboard, furrows her brow. Since I know I am there to have blood removed from my body, I push up my sleeve and bare it towards her. She swabs it with alcohol, inserts needle, and busies herself with her computer. She makes some frustrated noises at it, so I break the silence (because she did not speak a word to me this entire time. Zero explanation of what she was doing, who she was, what I was expected to do. Nothing.) by asking if she is having computer problems. She nods in the affirmative, clearly exasperated.
My blood is filling up a vial. I look down to my immediate right and see a large biohazard bin of used needles and other gross items. I wonder if that is all from today? I consider asking her, but then decide that I really do not want to know the answer.
The vial is full. She removes it and tells me to hold the gauze on the location tightly as she applies labels. Next she hands me a container and stares at me. I stare back blankly. She says, "I'll need a urine sample. Do you know where the bathroom is?" I do not.
I say, "It's my first time here. I don't know where anything is." She tells me where to go, shouting behind me when I mistakenly turn right too early. I have to walk through the waiting room to reach the bathroom. Everyone stares again and I bebop past them. I smile. I do as I am told and return it to the nurse and take my seat next to her. She is frowning at the computer again. The nurse across from us also appears frustrated about her computer.
"Oh, so this is all computers that are giving you trouble today!" I attempt conversation once more.
"Yes," she says. "We are grieving. We need grief counseling!" She laughs. I awkwardly laugh back, perplexed. I cannot wait to get out of here.
Eventually I realize that she is staring at me. She asks if I know where I am supposed to go next (I do not). She directs me back to the very friendly front desk person who will help me out, and he does.

Suffice to say that right now I am pretty pumped to be heading out the door for today's labs. I am more seasoned now, my friends. I have headphones.

Addendum: Later that day I shared this story with my sister-in-law, K., who asked if they used the chemo port to draw the blood samples. I said, "No. And I didn't want that lady to take my chemo port-virginity, anyway!" Truth. I did not.

Update: Today's labs were much more efficient and I was greeted warmly by the nurse. The music, however, was Clapton again (thankfully could not hear which song since I was clear across the room). John has offered to make them a mixed tape.