Toughest Role Starring ME

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.

Dizziness.

Nosebleeds.

Chemo brain.

Severe anemia.

Rapid heartbeat.

Godawful nausea.

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.

Until next time,

Warrior Megsie

Burned Aging

I remember wanting to look older when I was in college. I used to volunteer as a reading tutor at a public elementary school my senior year. One time when I was at the school, a teacher told me to get to class. She saw me as 6th grader and not a 21-year-old senior in college. The fact I had my hair in pigtails probably didn’t help. I just recall being so upset that I was mistaken for someone so young. Now, I would give anything for that to happen again.

How come no one tells us how drastically cancer 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 once about how much my face and neck would age.

Yes, I have always been on the vain side. Growing up in community theatre and ballet meant always looking in the mirror and looking the part. 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. 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. This picture below still makes me cringe. By the end of my 33 treatments, the layered lines had formed completely across and down my neck. Instantly looking 20 years older in that area.

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. As you can see below in the pictures from three 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.

I don’t know my skin post-cancer. It’s dry and scaly in some areas now. The skin underneath my eyes has taken the biggest beating due to constant rubbing, new allergies to certain dye and contact dermatitis. I’m constantly trying different creams trying to find the right one to truly hydrate my skin.

Don’t even get me started on my lips! They used to be smooth too. 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. I never know what will cause another skin flareup.

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. I treat my face like a canvas. It is amazing what makeup and good lighting can do. I miss my thick eyebrows. It’s still strange to fill them in with a brow pencil. Now I’m a master at it.

Once the makeup comes off, I look a little gray, burned and forever fatigued. My face and neck are constant reminders 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.

So, hair me out…

I’ve been accused in the past by other warriors/survivors for being attention-seeking when I talk about my hair. I had trusted three, who I thought were friends, so took the insulting words to heart. That’s why I permanently left one local breast cancer group and took a three-month break from a national one. I came back to that national one because it’s too fabulous of a group to allow certain people’s insulting views keep me away from the support I need.

Now, I’ve always been a tad extra. That’s my natural and dramatic personality. Even when I’m sad or depressed, it’s done with flair.

It’s why I took ballet and always wore my hair in buns, French braids and twists.

It’s why I basically lived at Macon Little Theatre and Theatre Macon in high school and minored in Theatre at The College of Saint Rose in Albany, NY.

It’s why I had special outfits during my salsa and swing dancing days.

It’s why to this day, I want to be an actress.

Losing my hair was even more traumatic than I could’ve ever imagined. Not only did I lose the hair on my head, I lost all the following as well:

Eyebrows

Eyelashes

Nose hair

Arm hair

Leg hair

Lady parts

Underarm

That’s why I get so infuriated when people say, “it’s just hair.”

So, losing my hair and being beyond upset and devastated has been genuine. It’s why when my hair came back that chia pet curly I always reference was so difficult to process. That’s why it’s especially hurtful when those in cancerland question my feelings.

It’s never been about vanity. I know I rocked the bald look. I also rocked the chia pet curly look. That’s called style. The anger and just utter disbelief came from not physically recognizing my image in the mirror. I’ve dealt with and continue to deal with so many issues post-cancer like weight gain, more surgeries, more scars, and don’t recognize my body at all. None of it is even remotely the same. I just wanted the hair that I had known my entire life to grow back the way I remembered it – straight and super thick.

 So, I made a video to show all the different looks of ME past and present (also posted earlier on social media). It’s MY hair story.

My Hair Story

I didn’t post it to reel in compliments. I posted it for myself, to see the progression of my hair pre and post cancer and see the different looks as I’ve tried to adjust to my reflection. I see the pain in my eyes masked with a smile in the ones starting in 2015 thru present.

I know I “look healthy” and all should be right with the world, but that is not my reality.

My friends continue die by the hands of the cancer beast – two died this week.

My mother’s treatments for her rare blood cancer continue to wipe her out.  

My chronic pain continues to be a challenge to manage.

My career in the corporate world is stagnant.

So, don’t come at me with insults or how hair isn’t important to you. Every single person’s cancer journey is THEIRS and extremely personal. I just want to claim some part of me that hasn’t been devastated by breast cancer.

I want to see ME again.

I deserve to see ME again.

My Reflection

I somewhat freaked out some fellow coworkers when I showed up to the work happy hour on Friday. Why? Well, I had my hair pulled back. My chemo curls were blown straight last week. I had been wearing it down at work with my usual hair accessories. I had discovered on Friday that my hair is just long enough to pull back if I use a tiny clip and a million bobby pins to hold the sides in place.

So, when I walked into Taco Mac, no one recognized me at first. The looks of surprise were apparent.


No headband. 
No fascinator. 
No hair clips.


Just pure ME.

So why did the bulk of them freak out? One of my male coworkers said he hoped I wear a tiara or flower in my hair on Monday because then I’ll “look like royal one they all know.” I confess I was taken aback by the comment. I thought I looked smashing. I looked like the ME I remember. Then I thought about it and get his comment. I believe he was trying to say the hair bling fits my big personality.

I always wore my hair up or pulled back since I was a kid, teen, young adult and as an adult. Wearing my hair in a ballerina bun, French braid, French twist, pigtails, etc. is very much a part of ME. I used to be svelte and statuesque. I loved brushing my hair and deciding which classy or cute style I would create each day. Then when I added my glasses, I was often described as the “sexy librarian.”

I’ve been working very hard to claim back some parts of ME. I’ve been recognizing my reflection more and more when my hair is blown straight. I finally see the length.  The thing is, others I’ve met post-cancer don’t recognize me this way. They don’t know what I really look liked. Everyone at work knows I’m a cancer survivor because I don’t hide it anymore. So, they either forget these are chemo curls or think they are natural.

Someone commented on my Instagram when I posted a little about this. They said, “Interesting that you don’t see your curls as feminine. I see you as very feminine, but from my view, it’s not the hair but the face.”

To me, I…and I will repeat…I think I look like a chia pet on steroids. The chemo curls make my head look huge! The height of the hair really bothers me. I can’t wear hats when it’s like this. I don’t want “big” hair. I’ve never wanted curly hair. EVER. That’s why I started wearing the hair accessories because I can’t do anything with those chemo curls. The curls are so tight, that I can’t style it. So, I added the bling to feel feminine and give myself the variety I crave.

As a birthday gift, my mother is paying for me to get the chemo curls blown straight 2x per month. Any time I mention this, I always get those saying to get a keratin treatment or sending me pictures of the hair tools they use. Well, I don’t have the physical strength to blow these suckers out. They are TIGHT curls. It takes a lot of arm strength, technique and patience that I don’t have but my stylists do.  

How come no one sees I’m playing a character when I wear my bling? The character of a cancer survivor who doesn’t recognize herself or her body.

I’ve never once felt feminine with the chemo curls unless I have a hair accessory. Notice I never say ‘my’ when I refer to them. To me, they aren’t natural. Poison changed my hair chemistry, not me. It wasn’t MY choice. Why can’t others get that? I’ll say it again. It wasn’t MY choice to have curly hair.

I get sooo many people telling me how cute they are. If they were loose curls, maybe I would agree. I always feel the need to tell people what I used to look like and show the pictures as proof. I wasn’t always this overweight woman with a tight, curly ‘fro. I was fit, classy and stylish.

Am I happy my hair grew back? Of course, I am. Did I think it would grow back entirely different from what was my norm? No. So, I can’t stop being surprised and dismayed every single time I look in the mirror when the chemo curls are there. It’s not what I know.

I’ve always been a tad extra from birth. Adding a hair accessory doesn’t change that. It’s strange the more I’m starting to look like ME with my hair blown straight, no one else seems to recognize me.

My life on the cancer train lately is confusing, painful and disappointing. Yet, it’s also been liberating because I am beginning to see a reflection that is familiar.

I am seeing ME, even if no one else does.