Going through cancer is like being on a never-ending rollercoaster in the dark. You never know what drop or curve is coming next. I’ve often written and spoken about how devastating the physical changes are and how destructive the mental changes are. Yet, I realized something a few days ago that is a surprisingly positive side effect – my attitude changed.
There isn’t a day that goes by without missing my pre-cancer body. Every morning I wake up, I immediately curse it because I can no longer count on it to be healthy or strong.
Painsomnia is my nightly companion.
My cortisol belly and non-estrogen-producing body horrify me by their immense size.
The physical strength I used to possess is gone.
Nails break, eyebrows are filled in with brow gel on the daily, and lashes are no longer thick.
Fibromyalgia and chemo-induced peripheral neuropathy are the exes who won’t leave me alone.
Lower back pain did temporarily go away after two facet injections last year but now I need a third one.
This body of mine continues to bankrupt me financially and mentally. There is so much out of my control, except my assertive mind. I will no longer tolerate bullshit or being disrespected – personally or professionally. I’ve mentioned this before but there’s a difference now. I’ve been actively living in my truth and values (yay therapy).
I’ve dealt with racism and microaggressions my entire life and career but never had the confidence to truly do something about it. The first time I actually said, “I will not be the Black token” and “I do not feel safe” was 15 months ago at my previous employment. I was so scared, that my voice shook, but I knew I had to stand up for myself. I was drowning mentally and emotionally but something shifted in my spirit the first time I said those words.
I believed in my talent and expertise so much that I just knew I would land on my feet. Did it hurt me financially to leave a job back then without a backup plan? Yes, it did, but I spoke MY truth. Now that I’ve done it once I can’t go back to being silent.
Existing in this country and in this skin has cracked my soul in ways I can’t fully verbalize. While it’s exhausting, I am becoming careful about protecting access to my energy. Who knew maintaining healthy boundaries would be difficult yet freeing at the same time?!
Though I continue to struggle with accepting this post-cancer body both externally and internally, I feel more confident to be unapologetically ME and stand up for myself in situations where no one else has the courage to do so.
Breast cancer is glamourized to look pretty, easy and fun. The commercials also show older women smiling with makeup on. No wonder other cancers hate us. I was diagnosed under 40 years old with stage IIA invasive lobular breast cancer five years ago. How come no one tells us how cancer drastically ages the body externally? Many of us internally feel older due to permanent side effects and other illnesses that were triggered by our cancer treatments and surgeries. I honestly never thought my face and neck would age.
Yes, I have always been on the vain side. When I was growing up, I performed in community theatre and ballet which meant always looking in the mirror. I always used to look years younger than my actual age, even in my early 30’s. This rapid aging is tough to accept because no amount of creams or concealer can fully cover it up.
I first noticed the aging of my neck four years ago. It used to be so smooth. Now it looks like lines of multilayered necklaces going down it. Quite shocking to see in the mirror. Why did I age in that area?
I honestly believe it has something to do with the radiation burns that went up the left side of my neck. I could see the beginning of lines then. I’ll never understand why I burned so terribly in so many areas (neck, back, under arm) aside from my left breast. Radiation was just as painful and horrific as chemo. That’s why I get so upset with another patients say radiation is a breeze. My flesh burned off on my under arm near the area of where my tumor once was. Yep, you read that right. It literally burned off. I felt like burned bacon. I know what it feels like to be a burn patient. The pain was excruciating.
These pictures below still make me cringe. By the end of my 33 treatments, the layered lines had formed completely down my neck. Instantly looking 20 years older in that area. As I look at this area now, it’s always irritated and itchy. It feels rough to the touch and scaly. Thanks to COVID-19, I haven’t been able to see my dermatologist. Why is it continuously itchy? I don’t use perfume or any lovely smelling lotions on it. It’s a big eye sore when I wear any type of shirt because there is no way to hide it unless I wear a scarf. I feel extremely self-conscious about it.
It has taken a full three years for the dark panda circles under my eyes to fade enough to where I no longer need to wear a pound of concealer to attempt covering them up. I only need half a pound these days. As you can see below in the pictures from four years ago, nothing could fully cover them up back then. Aside from looking fatigued, I looked haunted.
It’s only recently that I no longer need a pound of makeup to cover the visibly aging skin. I just need half a pound instead! Seriously though, I continue to struggle with externally looking so different and just so much older. Then add medically induced menopause to the mix, and all hell has broken loose.
It has been four years since the radiation days, and I don’t know my skin post-cancer. It’s dry and scaly in some areas now. The skin underneath my eyes took one of the biggest beatings due to constant rubbing and contact dermatitis. I was constantly trying different creams trying to find the right one to truly hydrate my skin.
I finally got to the bottom of the contact dermatitis that was so painful last summer. After an allergy test at the dermatologist, I’m allergic to the dye in antibacterial soap. Every single time I was washing my hands and using the orange colored antibacterial at home and at the cancer center and using orange or green colored hand sanitizer, I would touch my eyes to wash my face with clean hands not knowing my fingertips were causing the irritation. Now everything is clear including hand sanitizer.
Don’t even get me started on my lips! They used to be smooth. Ever since the chemo days, I continually struggle with peeling and cracked skin on each corner of my mouth. Fortunately, my dermatologist gave me some cream that I use on my lips and under my eyes to help with the dryness but it’s not a permanent fix. I never know what will cause another skin flareup. It’s a good thing I am chronically single and a hair away from being thrown into a convent because these lips would only be kissable for an alligator.
It just boggles my mind that all this aging happened without zero warning. The physical changes are just so jarring. To everyone else, I look super healthy. Once the makeup comes off, I look a little gray, burned, wrinkly, and forever fatigued. A constant reminder of the trauma which is why I can’t ever NOT think about my cancer experience. It stares me in the face and plagues me daily.
My 4-year chemoversary was on February 26th. I confess I had many mixed emotions and flashbacks on that day. Anyone who has been reading my blog for some time and/or follows me on social media has seen numerous posts about the chemo curls and how I’ve hated them from day one. Looking in the mirror every single day and not recognizing myself has caused major trauma to my psyche.
Last year was the first year I was able to wear my hair straight without looking like a mushroom head. I was so excited to post the first pictures of my hair blown straight because I recognized my reflection for a brief moment. Though I know none of the comments were meant to be malicious, I confess I was deeply hurt when soooo many commented the straight hair was nice, but I looked cuter with the chemo curls. If I’m being honest, it felt like a slap in the face. Couldn’t they see these curls are a constant reminder of the most painful and horrific time of my life?
I had wanted and needed so desperately to connect with some part of me again. My hair has always been important to me. I come from a long line of women on my mother’s side with glorious hair inherited from my great-great-grandmother Ella. She was a full-blooded Cherokee Indian. Anyone who knows me from when I was little saw how long my mother’s hair used to be. My hair had grown to my shoulder blades and super thick by the time I was 9 years old, but I cut it when I was 10 after seeing Anne of Green Gables. It was the scene when she had to cut her hair into a bob because she wanted to dye her red hair black like Diana Barry, but it turned green. I always had at least a chin length bob or longer.
No one has seen the tears when I realized my hair when worn straight isn’t thick like it used to be. The right side isn’t growing fast at all and looks odd. That’s why I started wearing it curly again. I’m waiting for that right side to catch up.
Here I am 4 years later, and the curls seem to be permanent. The only reason I can handle them at this moment is because I do have the option to blow it straight even with the wonky right side. I didn’t realize how much I needed to know I had options again.
Those 16 rounds of chemo I had to receive were the hardest and scariest 5 months of my entire life. I didn’t know I could feel such pain in my body. I had the motherload of side effects, aside from the hair loss trauma. I went back to my journal during that time and compiled a list of ALL side effects I experienced while on Adriamycin, Cytoxan and Taxol.
Loss of appetite.
Tongue would swell.
Bottom teeth ached.
Toenails turned black.
Loss of taste and smell.
My tongue turned black.
Terrible and painful constipation.
Bone pain from the neulasta shots.
Loss of control of bowel movements.
The palms of my hands and feet looked burned.
Hair growing back completely different and curly.
Fingernail beds lifted and ultimately fell off and so painful.
Weight gain from all the steroids infused before each chemo.
Lack of sleep from all the steroids infused before each chemo.
Dark circles under my eyes – still have them but not as panda like.
Physical weakness to the point I had to use a cane and could no longer drive.
Hair fell out everywhere – head, eyebrows, nose hair, lashes, legs, underarms and lady parts.
Mouth sores (those in chemo now, ask about Gel Clair and use it with the magic mouthwash).
Neuropathy in hands and feet – permanent nerve damage to my feet. Zero feeling from upper balls of my feet through my toes within the first 15 minutes of that very first Taxol chemo.
Ultimately chemo induced fibromyalgia that appeared a year after finishing treatment but not properly diagnosed until two years later.
So, when others think I should just move on or not focus on the negative, what they don’t comprehend is I have permanent damage ALL stemming from the chemo. As a former dancer and musical theatre actress in my younger days, to not feel my feet every single day is traumatic. The days of ballet, musical theatre, swing, salsa and tap days are over. I used to walk so gracefully. Now I have a hard time walking across a parking lot because the numbness can also move up my legs and I’ll fall over. That’s why I have a permanent handicap sign for my car. I feel like I’m 543 instead of 43 now.
No amount of gabapentin, acupuncture and any other “magical” treatment will work because my case is severe and permanent in my feet. The nerves are dead.
The nerves in my hands are still regenerating because they often sting and feel like tiny knives stabbing me. Even as I type this piece my left fingers are rather stabby and hurting. I had to learn how to button clothes and put on earrings, bracelets and necklaces again. I have multiple burns on my left arm from when I’ve lost all feeling in my right hand and dropped the iron. I have a new burn on the left side of my neck from losing feeling in my right hand when using the curling iron a few weeks ago.
My body is permanently changed from the chemo, from head to toe. This is one costume I’ve never desired to wear. From chronic pain to neuropathy to thin and wonky hair to burns, I continue to feel like an actress playing the greatest role of my life – ME.