Earlier this week I went to a support class offered by the American Cancer Society. It´s called Look Good, Feel Better and its purpose is to help women dealing with hair loss improve self-esteem. I hadn’t had any noticeable hair loss yet, but I wanted to be ahead of the game and know what to do once it did start falling out, especially the brows and eyelashes.
As I walk into the class room, I notice I’m the only one with a head full of hair. The age range was about 40 to 75, and the racial representation was very diverse. The instructor wasn’t there yet, everyone was just chatting.
Once I settle into a chair, one of the ladies, very tactfully, addresses the elephant in the room: “You seem to be early in the process”. I introduce myself and explain that indeed, I had my first round of chemo less than 2 weeks ago. They immediately ask how it went. “Well, since you asked, I did have a miserable couple of days with a fainting episode that landed me in the ER.” What followed was such a genuine display of compassion and teaching, that it makes me tear up just thinking about it. They all had tips on how to make food and liquids more tolerable, how to avoid dehydration, how to try to stay active.
The instructor never showed up. Someone from the clinic staff came over, apologized profusely, and called the class canceled.
We all stayed, sharing experiences, treatment plans, coping mechanisms. And I felt so at home, among such wonderful, resilient women. It may sound odd, but it was great to be in a group of people where having cancer was normal.
I get home a few hours later, strike my fingers through my hair as I’ve done hundreds of times a day, every day, for as long as I remember. And alas, there’s a bunch of hair between my fingers. And then I notice hair on my clothes. Hair on the floor. Hair on the counter-top.
When I see hair in the sink after brushing my teeth, I immediately remember what is to me one of the most powerful scenes of recent television: Walter White seeing clumps of hair fall out, and subsequently shaving his head in Breaking Bad. That was the moment he physically transforms – from Walter White, the regular guy, into Heisenberg, the super villain.
I decide I need to find a better pop culture reference, I can’t associate going bald with becoming a criminal mastermind. It takes me a while cause all the baldies that pop into my head are bad guys like Lex Luthor or Dr Evil.
Until I finally remember Charles Xavier, Professor X. And I think of my wonderful group of ladies, from whom I learned so much, in the class that never happened. The wise ones, guiding the inexperienced, helping prepare for the battle ahead.
(This one has to be in Portuguese)
Das muitas coisas que me agoniam com relação a quimioterapia, ficar careca é a terceira da lista. O stress que a situação causa a minha família é a segunda. E no topo, está a imunidade baixa e o medo de uma besteirinha virar uma coisa muito grave.
A coisa é tao séria que uma das recomendações médicas é não usar lâmina para raspar nada, pra evitar que um cortezinho cause uma infecção. Se for realmente necessário remover pelos, recomendam usar somente barbeador elétrico, por segurança. Eu tava me sentindo tão mal nos últimos dias que não tinha energia nem pra pensar no meu sovaco.
Mas a medida que fui melhorando, a cabeleira foi me incomodando. E hoje, pelo visto, estou muito melhor, porque decidi que tinha que resolver esse problema de todo jeito. Responsável que sou, lavei o barbeador do marido e fui a luta.
Comecei pelo lado operado. A primeira fez tchan, a segunda fez tchun, mas não tive coragem de ir adiante. A maioria não sabe, mas um dos efeitos colaterais da mastectomia é perder a sensibilidade de grande parte do braço. Eu não sinto nada do meio do tórax até metade do braço esquerdo. Minha vista também já não é mais essas coisas, e como não ia sentir nada se cortasse a pele, decidi deixar o lado esquerdo meia boca mesmo.
Mas no lado direito eu fui confiante. Armada do que há de mais avançado para remoção de pelos faciais masculinos, combinada com essa maravilha da natureza chamada tato, fui fundo embaixo do braço direito.
Se arrependimento matasse.
Não sei se foi a quimio ou se foram os cabelos que irritaram a pele, mas ficou tudo uma grande vermelhidão ardida. Eu já era paranoica antes, imagina agora. Estou morrendo de medo que vire septicemia. Taquei Neosporin na área toda, botei os maiores band-aids que achei e agora vou ter que meditar muito pra poder dormir, porque a dose básica de calmante não vai dar.
Ainda bem que tenho consulta com a oncologista amanhã de manhã. Estou meio constrangida de ter que mostrar meu sovaco pra ela e pensar no carão que vou levar. Mas é melhor o carão do que a septicemia.
I’m not sure when this “sharing” feeling came along.
Talking about my problems never came easy, except to a couple of close friends and a therapist. During the miscarriage years, I’d rather stay forever inside a cave – or move all the way to the other side of the country – than talk about it with anyone.
But something about this cancer feels different. I don’t feel shame, at least not yet. A feeling of unfairness every once in a while, sure. But if David Bowie had cancer, why not me?
Part of the appeal of writing about it is defying expectations. Everybody knows cancer sucks. A much more interesting story is talking about the parts that are not expected, like having fun with colorful wigs.
But what about the parts that are really cancer-awful? Is it worth writing about those?
Do I write about fainting in my bathroom and being rescued by paramedics in a puddle of my own sweat? I’m struggling with this one.
But, yeah, that did happen, and they took me to the ER in an ambulance. After going through a bag of IV, my blood pressure stabilized, labs came back normal-ish, and I was discharged.
As I thought more whether I should write about this episode, I realized that it doesn’t have to defy expectations, because this is not a story. This is real life, my life, and unfortunately this life is dealing with cancer. And probably this is going to suck more often than not for a while.
So I made the decision that should have been obvious to me from the beginning: I’ll do what I feel like doing, whenever the mood strikes. I’ll write about the good moments, or the sucky moments, when I feel like it. And I’ll go back inside the cave when I feel like it.
I just won’t move to the other side of the country again. No dilemma there.
It was better than I thought.
The worst part was the very beginning, just getting the catheter in. I was always told that I have “beautiful veins” and I was oh so proud of them. Turns out that veins used for blood draw can’t be used for chemo. Who knew?
I was poked by 2 nurses unsuccessfully and one other nurse didn’t even want to try. I was feeling like a problem patient but it was really just in my head – all nurses were really nice about everything. A specialist was called from the hospital, and thank goodness she was able to get it in the first try.
I spent some time worried because the arm was sore. I wasn’t sure if it was sore from the pokes, or if it was the drugs. But the nurses came to check things often and it all seemed to be going fine. I put a movie on the iPad and having some distraction helped.
I had driven to the clinic with my mom, but because of an anti-anxiety medication they gave me, I wasn’t able to drive back. Support Team to the rescue! My wonderful friend Dalila* drove there with my husband to get us. Hubby also had to take a crash course from the nurse – he will need to give me a shot every day for the next 7 days. I’m happy to report that the first one went pretty well.
I have some nausea but so far it’s been manageable with the anti-nausea meds they sent me home with. I was even able to take a 10 minute walk outside this afternoon. But I’m starting to feel some fatigue. I have an acupuncture appointment tomorrow that I really want to make, but Dr Oncologist said I might not feel well enough to go. Days 3 through 8 are supposed to be the worst. I hope they also end up being better than I thought.
*Not her real name, but it’s an easy guess if you know her 😉
Or as I’ll likely remember it, Chemo Eve.
It was a day of TODO lists. There were too many things I needed to take with me to the clinic, questions to ask, medications to take.
But I was able to squeeze in some time to improvise a Valentine’s day snack for my daughter. Hopefully that is how SHE will think of 2/14/2017, just Valentine’s day. I’d rather keep the Chemo eve just for myself.