Any detectable level of the disease has been eradicated. That is what we are told when we are declared NED, or No Evidence of Disease after treatment. They don’t call it remission anymore because no one can say for sure that every last cancer cell was demolished so instead they say you are NED, which covers their asses and makes you feel pretty good about it, all things considered.
What there is plenty of ‘evidence of,’ though, is that the disease was there. You know those t-shirts people get when they go for a day trip off a cruise ship that says “I was here,” with a little x marking the spot on a random island? That is what your physical body is like after treatment and declaration of NED. You are the island and the x marking the spot is the corporal devastation cancer has left on your body.
As time passes, many of these Xs start to fade, or at least other people’s perceptions of them start to fade. You start to look less ghastly, wounds heal, hair grows back.
Please read a smidge of the following from an NCBI study in The Oncologist from August 2018:
Friends, those are some staggering numbers. 75% of participants said they had significant hair thinning 3 years post-treatment and it was the most commonly reported problem, post-treatment.
I have blogged about it many a time so you probably know my hair issues, but for newcomers, here is a Cliffs Notes version (if you are a regular reader, skip the next 3 paragraphs):
Pre-cancer, I had lovely, thick, shiny dark brown curly hair. Then chemo, consisting of Taxotere and Cytoxen made me bald, bald, bald. After treatment hair started to grow back- Yippee!! A year passes and, what’s that…? Where is the rest of my hair? Why is this burgeoning mullet so skant? Another year passes and, did you hear that? Was it the sound of my soul weeping because as I went through my Professor Snape phase, I knew that my hair had been permanently affected by chemo? I was that 42.3% who had ‘incomplete hair regrowth.’ Maybe I had half the volume than before. Maybe.
Next comes denial, followed by continuing to grow my hair out to pre-cancer length, hoping the next day I would wake up and it would be thick and awesome again. Spoiler: it never was. Once it was back to being long, I spent some time looking at ‘before’ pictures and realized that we weren’t comparing apples to apples. It was more like apples to, let’s say, a snow pea.
In a moment of surrender, I had my hair cut short, but with a long swath on the top, in early 2020. I had it dyed ice blonde and thought to myself, ‘problemo solved.’ I have taken back control. I have a cool new haircut and now I am alterno-mom dropping the kids off at baseball with a punk rock style.
This confidence lasted a while until I realized my already frail and brittle hair was being savagely murdered by the bleach. Which leads us to the present. Any hair that was blonde, which was 70% of it, was going to have to go. It could not be saved by any Keratin product you’re trying to sell me online.
The kids and I head to the barber. She and I decide it is time for the el choppo so I could have the best chance at a re-start for whatever desperate Hail Mary hairstyle I try next. I leave with the same haircut as my boys. My grow-in is my natural color of brown with a heavy dash of grey, the tips frosted like any good 90’s girl. I ask the kids what they think and get silence with some masked side-eye.
About 30 minutes after we get home I get a call from my husband who is at work. He is giggling as he is wont to do when nervous and asks about my hair. I ask him how he knows I got it cut and he said he got a text from one of the kids. He sounded a little worried. I asked what the text said and he was vague, but indicated it wasn’t complimentary. I hung up and sought out the cell phones of my 5th and 6th graders.
I will not tell you which child it was, but I found the text chain. A speech bubble has been redacted as it is not pertinent to this story. See below:
Pause for reactions to settle in.
I was gobsmacked. Those are horrible words. Mean words. Biting words. And they come from within the house, from a human that I produced. A human who knows to some degree how upset I am by the loss of my old self, which includes hair.
Commence spiral. I acknowledge instantly that it is not about the child and their opinion. It is about cancer and what it has taken from me. My sense of femininity is under constant attack from the loss of my breast tissue and sensation. I am 40 and in peri-menopause for 10 years, which causes all kinds of femininity issues. And now my hair is gone again. Fuck you cancer. Honestly, what a fucking prick. Pardon my French, but really.
I cry in the bathroom for a while. I am crying because I am pissed this happened to me and I am pissed that I have to even think about outward femininity in 2020. I should be more evolved than this, but guess what? I am not. And the icing on the goddamn cake is that these words that sting like acid in a wound are from my child. They called me a ‘disgrace.’ Unbelievable.
This child knows what they have done and has been in a shame spiral of their own since they were outed. I want to be there for them and tell them that we all make mistakes and it is a lesson, but goddamn if I am not so pissed that I am unable to do that yet. I know, as the shamee, I have to find the strength to soothe the shamer, but also F that kid!
You may be waiting for the nice little bow that ties this story up. Sorry to disappoint, but there ain’t no bow. I am very overwhelmed by the sadness of being stuck with a cancer-ravaged body that won’t even allow me to look like the person I always identified as (here she is, for reference, at my mastectomy May 18, 2016).
I don’t want to have to work to feel feminine or to be perceived as feminine. I don’t want to even care, but I do. I want to be bigger than someone else’s hurtful words. But words hurt, gang. Other people’s negative opinions hurt, I don’t care how evolved you think you are.
We all make choices about our appearance every day, but sometimes those choices are hijacked by something bigger, or even badder. I didn’t choose to look the way I do, but alas, here we are. I will try to choose to not be so hard on myself, but for today, Imma be sad AF.
***Addendum*** 12 hours later a note appears where said child writes that they are so, so, so, so, so sorry and it was meant to be a joke and they think I am beautiful no matter what, yadda, yadda, yadda. Of course I appreciate and will accept the apology because
I have to I am an evolved person, but I don’t believe it was a joke and even if it was, the sting is the same. Words matter kid, and I hope this teaches them to keep negative ones to themselves.
As a reward for reading this whole thing, here is a picture of my new haircut on top of my crying face:
4 Comments Add yours
Grace, I feel like I need to respond but then again I am concerned my response will serve as no assistance to you or the children. We call them kids (or children) for a reason. They have so much to learn – I have always said kids could be so horribly cruel to others. We as adults, on the other hand usually behave in a much more “think it through manner.” My parents used to say; because I am such an open book and freely give voice to feelings large and small – ” Watch was you say. Because once it leaves your mouth – you can’t take it back!”
I have not had cancer but i have family and friends who have and had. I have saw the visible marks that heal and I have also seen the invisable marks it leaves behind. I know that there is always something to be grateful for and I know that for a survivor – inside them lives a bundle of emotions that even they don’t always understand them (fear, hate, anger, happy, sad, being anxious and sometimes just don’t give a damn)! Just know that your family (including the children) love you and they need you. And always take time to take care of you.
I love your cute new haircut but I am sorry to see you crying!! I also love the charming picture of you smiling at your child brushing your head!!! You truly are a gorgeous looking person without any hair! The most special part of you is your magnificent inner beauty. I am so sorry for all of the pain you have endured from cancer, but I am so grateful that you are a survivor and haven’t allowed cancer to harm your incredible, fun-loving, compassionate, caring heart. You have a special gift of brightening up lives around you. Stay strong and well and keep shining, Grace!!
Hi Grace. First I’d like to thank you on the info regarding PCIA. The numbers are really staggering. I had no idea. I, too, had super thick, wonderful hair which has been gone for about 9 months. A second round of 3 chemo sessions (delayed) took the little hair I had begun to grow. I’m older, so it definitely came back white/gray. I just saw my 33 year-old nephew at Christmas and he asked whether my “natural” hair color was going to come back. “Not unless I make a trip to the drugstore” was my response. And I have to tell you that as of now, there is no plan to make that trip. It just comes with the package of who I am now. I am super sorry that one of your children used the word “disgrace.” It was a moment they definitely wish they could take back. And to me, it doesn’t even apply. I actually love it because it’s a hip style and it’s a style that works really well with your face. Absolutely keep rocking that look into 2021!
Grace, I first discovered your blog in the summer of 2016. I too had been diagnosed with breast cancer and was struggling with the treatment decision options and whirlwind of all that entails. Since you started on this path a little ahead of me, I appreciated your insights every step of the way and especially that you didn’t sugar coat any of it.
I lost my hair thanks to chemo but I was prepared for it. I had several wigs and hats that I couldn’t live without. After chemo my hair did grow back, although with a different texture and color. Unfortunately part of my treatment includes taking anastrozole for 5 years and the unpleasant side effects of this drug are many. The one that distresses me the most is hair loss in the style of male pattern baldness. It’s a daily insult as I try to arrange my hair to minimize the hair loss appearance. I have fallen into a pattern of only washing my hair every 3-4days to lessen the stress to the remaining brave strands. Sigh
So trust me, I understand exactly what you mean in your recent post. I will take the anastrozole for one more year to reduce the likelihood of a repeat of the cancer, and hope for a miracle hair regrowth once the anastrozole isn’t on board, doing its work to remove all estrogen from my system. I have found no information on whether that is possible or not, so I will continue to hope.
Thanks again for leading me through this journey. Your fellow thriver, Jean Fitzpatrick