My Breakup with High Heels

I braved the crowd and returned a jacket to the mall this afternoon. As I’m walking through Macy’s and other department stores, my eyes couldn’t help but see all the fabulous and sparkling high heels. They were on every corner – high heels, low heels, boots and wedges. I can honestly say my heart hurt a bit.

There was a time pre-cancer when I loved, LOVED wearing all kinds of heels. When I had my statuesque body, adding heels just added to the flair. I could strut my stuff like nobody’s business too. I could even run and do cartwheels in heels. Even when the weight started piling on, I still loved wearing my heels.

When I saw those heels today, I had a million tiny flashbacks to all the heels, especially heeled boots I used to wear. I would pretend I was on the runway and walk with long strides, swaying my hips.

Thanks to the Taxol chemo, those days are long gone. I had to breakup with my love of heels and wear flats because of severe chemo induced peripheral neuropathy in both feet. I literally do not feel the upper balls of my feet thru my toes. And do you know what I discovered? It’s super hard to find really cute and stylish flats, especially when wearing a dress or suit. That height I used to love is gone.

My long strides in heels have given way to short, quick steps in flats. I no longer feel graceful. I tried to push past my feet and make them work it in heels and fell. I still have the cute heeled booties in the closet. I wobbled so badly that it was embarrassing. Landing flat on my butt really hurt my pride.

Yes, flats are more comfortable but really missing that special feeling when finding the perfect pair of heels.

I’ve had to modify so many areas in my life post-cancer. When I tell people this, they completely invalidate me and tell me to just “try harder” or “you can do it if you push yourself more.” Neuropathy is serious, and my case is severe. No amount of turmeric, acupuncture or B12 is going to help. The nerves in my feet are literally dead. Dead. They never tingle or hurt like my hands, which also have neuropathy. My feet get super cold. I honestly believe that’s why I don’t have hot flashes while in medically induced menopause. I get cold flashes.

So, while many get dressed up for holiday parties in sparkling outfits with fabulous heels to match, I’ll be the one in the corner with the short legs in flats staring wishfully at your feet.

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.

Is dating off the table?

This question is more complex than it was before cancer.  I honestly don’t know what to think anymore. I’ve heard of others meeting “the one” during treatment and after. I’m boggled by that.

Who has the energy?

Who has the sex drive?

Who has the funds?

I’ve been a body I don’t recognize since my 35th birthday, which is when I believe the cancer started growing. That’s when my thyroid got out of whack and major weight gain occurred. Even though my energy was somewhat lacking, I was still dating back then.

I’ve had my heart shattered once and deeply hurt once. I had begun to date myself and take time for personal growth when the cancer beast reared its ugly head. Dating was not even a remote thought once the cyclone of appointments swept me up.

I’ve been 43 years old for a month and starting to feel lonely. My life has been so busy trying to heal, battling long-term side effects from chemo, surgeries and radiation, serious depression and anxiety, chronic pain, medical leave, then more surgery and now I’ve had time to really process all that has happened since the cancer call on 9/14/15.

Things won’t magically become all right once I meet the ‘right’ guy.

I can’t expect to find happiness through someone.

I can’t keep waiting for someone to take care of me.

I don’t think like the woman I once was either. I’m jaded. I don’t even watch romance movies anymore. I used to be a sucker for those. I don’t read trashy romance books anymore either.

It’s like a light switch was turned off once I was medically induced into menopause at 40. Losing so many body parts all at once did something to me. I feel hollow. The only thing that makes me still feel like a woman are my tears.

I hear all the time “the right man will love you at your worst.” Well, I think many of you will agree that men are very visual creatures. Sure, I have a pretty face, but not a pretty body.

My body is scarred.

My body is numb in certain areas.

My body radiates and burns with pain.

My body is out of shape and struggling.

My body is utterly fatigued.

How can I date in such a low physical state? It was hard facing rejection when I was stick thin. I sure as hell can’t handle rejection looking and feeling like this.

I also realized that I can’t date a regular guy. I’ve nearly died. I’ve been through something life shattering and life altering. How do I make small talk about trauma? I don’t think lightly anymore.

Does that mean I need to meet someone also has/had cancer in order to relate? Hmm…

Until next time,

Warrior Megsie

State of Acceptance

Yes, I’ve stared the cancer beast down and still gracing the earth with my presence, but at what cost? I get asked all the time, “How are you feeling?” and “Feeling any better?” and “Aren’t you happy to be alive?” and “You beat breast cancer!”

The cancer beast still has its claws digging into my flesh, my very existence. The number of health issues and pain I now live with are a direct result from my cancer treatments. I grow tired of the saying, “Make lemonade out of lemons.” At this stage in my life, I’m having to grapple with so much permanent physical change that I constantly feel like the wind has been knocked out of me. I’m gasping for breath yet yearning for control.

For me, I can’t just close the 22-month long breast cancer volumes and move on. Why? It’s because I wake up every day in horrible chronic pain caused by the treatments and surgeries that are currently keeping me alive but not living or thriving.

What throws me for a loop is I was starting to come to terms with the permanent neuropathy in my hands and feet. I was making it work. It was a 1 ½ years after being declared NED that a different and more excruciating type of pain started seeping into my body.

I kept going to my primary and different specialists asking where this pain in my lower back was coming from. Then I noticed my pain would shift without warning to my arms or upper back or legs. A friendly pat on the back or arm would cause me to wince. I started getting frequent headaches. I would tell this to my doctors, and they would say I’m just healing from all the treatments and surgeries. They ran blood test after blood test, costing me hundreds of dollars and each one came back negative.

I knew something was seriously wrong.

I went to a pain management center, but all the doctor wanted to do was put me on opioids. I didn’t want to go that route. I still didn’t feel like I was getting to the root of the problem and felt they were trying to mask the pain.

It wasn’t until October 2018 that I met an amazing rheumatoid specialist at Emory University Hospital in Atlanta. I researched rheumatoid specialists online and came across his name. His reviews are stellar. His background impressive. I decided to try one last time to be heard and see what happens.

It’s an indescribable feeling when a doctor actually hears you and sees you. That’s exactly what happened in his office in that first visit. By this point, I was crying every single day from the pain, all while continuing to work. He looked me into the eyes and said, “We’re going to get this figured out.”

After more in-depth blood tests, they came back negative. It’s at that moment he mentioned Fibromyalgia.

Fibromyalgia is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. The condition is chronic (ongoing), but pain comes and goes and moves about the body. The disorder is often misdiagnosed or unrecognized and is and often complicated by mood and anxiety disorders. Exact cause is not known.

It has been described as Central Pain Amplification disorder, meaning the volume of pain sensation in the brain is turned up too high.

I’ve been pouring over blogs, articles and abstracts relating to chronic pain during my two-month medical leave from work. Before I could accept what’s happening to my body, I had to first understand how and why fibromyalgia was triggered.

The onset was triggered by the hysterectomy and bilateral salpingo oophorectomy I had on 2/15/17. I never fully comprehended on how major of a surgery it was or for my body to handle after going through breast cancer. It caused so much additional trauma to the body that it triggered the fibromyalgia.

Then after more research and watching the fantastic, heartbreaking and informative documentary Unrest on Netflix, I went even deeper and have determined this chronic pain would’ve made its presence known eventually. Though my case isn’t as severe as those in the documentary, it did give me a greater understanding of my body and reframe my mindset.

I had trauma to my system from birth. I was born three months premature and weighed 1 lb. 5 oz at birth. My mother had ovarian cancer during the pregnancy. Her medical team predicted we would either both die or only one of us would live. We defied the odds, and both lived. Aside from extremely low birth weight, my lungs collapsed, grand mal seizures and benign tumor on my right leg. I still have that scar.

The pain and trauma I experienced at birth remained dormant until the major surgeries shocked it back into existence. Of course, I would’ve preferred this happen in my 80’s rather than my early 40’s. At least now I can make more sense as to why I’m dealing with chronic pain now.

I’m finally, finally in a state of acceptance and acknowledge my limitations. I go back to work on tomorrow, July 8th with accommodations requested. I have to do what I must to keep working but also protect my delicate immune system and keep my pain tolerable.

After all, chronic pain never goes away. There is no relief. All I can do is keep it tolerable. It’s mentally and physically draining. I can accept this way of life now, but that doesn’t mean I like it.   

Until next time,

Warrior Megsie