Invisible Illness Combo with A Side of Wheelchair

It’s tough having an invisible illness while looking relatively young. That old saying, “Don’t judge a book by its cover” is so true. I don’t look like someone who would have a permanent handicap sign. I don’t look like someone who sometimes needs a cane to walk from the car to the store. I most certainly don’t like someone who needs wheelchair assistance at the airport.

Well, for the first time in my life, I requested wheelchair assistance for my flight to and from NYC last week. I didn’t want to admit that I needed help. I knew I would get looks. I also knew I would possibly not be believed. So, when the older guy came over to the ticket counter with the wheelchair, he completely overlooks me and asks the ticket agent who requested the wheelchair. I had even gestured that it’s me, but he asked the ticket agent again who requested it. He was beyond rude. If it hadn’t been 5am I would’ve immediately complained but didn’t want to expend any of my precious little energy going nuclear on this guy.

All was made better when I arrived at LaGuardia airport and had the nicest woman waiting for me with the wheelchair as soon as I walked; okay, slightly hobbled, off the plane. I had told her about my unpleasant experience at the Atlanta airport and she told me to not worry now because I was in good hands. Not only did she wheel me all the way to baggage claim, but she also wheeled me all the way to the cab and also handed my luggage to the cab driver. Now that was star wheelchair treatment.

While I felt okay enough on the flight back to Atlanta, it was a different story once the plane landed. It was a full flight with not much room to stretch my legs. This time it was a younger guy waiting for me with a wheelchair as I not only hobbled but stumbled off the plane because I was in excruciating pain all over my body. The best way to describe fibromyalgia pain is a radiating burning feeling that is felt from head to toe with a big ‘ole headache as the cherry on top. This young man was fantastic! He was pleasant, energetic, and so thoughtful the entire ride to baggage claim. Then he wheeled me all the way up to the MARTA (name of our Atlanta trains) gate, so all I had to do was get up and walk right through it and up the escalator to the platform. Once again, I received star wheelchair treatment.

Of course, as I was driving home, I wondered if I’ll ever feel safe in this body? Will I ever feel strong again? Will it ever not hurt to the point of pushing me to tears from frustration, anger, and pain because I have to deal with this bullshit 24/7? I no longer remember what it feels like to not be in excruciating, burning pain.

So, it’s time to officially reconsider going the medical marijuana route. My primary’s PA actually validated my feelings and has diagnosed me with intractable pain. I’ll write more about this diagnosis next time. She referred me to another doctor who specializes in prescribing medical marijuana. I’ve tried the CBD/THC drops in the past, and they didn’t help with my pain at all. Here’s hoping I find the right method of medical marijuana that will help minimize the pain and not just make me drowsy.

This life on the cancer train often sucks and wish there was a final destination to be able to rest and recover. A girl can dream, right?

Until next time,

Warrior Megsie

How Much of Me Can I Reveal?

My birthday is next Saturday, July 3rd. I’m hitting another pivotal age that will move me into a new age category when filling out registrations, applications, or patient paperwork – 45. Aside from noticing how much my face and body has aged the past five years post-cancer, I’ve noticed the mandatory toleration of bullshit and then racist bullshit barometer that has been forced upon me since the first time I was called a nigger in the 4th grade in order to survive is gone.

Will there ever a time where I can bring all of myself into a room? How much of me can I reveal without getting hurt? How do so many white people not see the protective cloak I wear to help fend off the inevitable insults, microaggressions, full on racists remarks, undermining of me, and them trying to “put me in my place?”

I remember turning 25 while living in LA. By that point, I had become

A little jaded.

More insecure.

Had experienced first heartbreak.

Unhappy with career.

Self-hate.

Diagnosed with depression and anxiety.

I couldn’t financially pursue acting the way I wanted because many unexpected and painful things happened while in LA that forced me to go the corporate route because I needed health insurance and somewhat steady income. I put my dreams on hold.

I remember turning 35 while living in Atlanta. By that point, I had experienced

Living through a terrible recession.

More heartbreak.

Lack of professional direction.

Being called stupid by my white female boss when I worked for an in-house agency.

Being told I’m brilliant by a white employer but unwilling to pay more for my expertise.

Letting go of pursuing acting.

More health issues and unexpected weight gain.

My hair on the left side started falling out.

More depression and anxiety.

Self-hate.

My white doctors dismissing my symptoms even though I knew something was seriously wrong.

More anger that was boiling into rage.

Now we fast forward to soon-to-be 45 while living in Atlanta. Now, I continue to have difficulty navigating through life because of

Supposedly “surviving” Stage IIA invasive lobular breast cancer.

Lack of quality of life thanks to permanent damage stemming from 16 rounds of chemo, 8 surgeries, and 33 radiation treatments.

Unmanaged chronic pain due to fibromyalgia and chemo induced peripheral neuropathy and medically induced menopause.

Being told by two white women when I was working at a huge ad agency that I had to keep my health and work separate when I began struggling from side effects from taking Arimidex to help prevent a recurrence. They said this in front of everyone.

Being called by the other black woman’s name 2x by an older white woman, who was/is a tRump supporter, after being there for two years at the job I had before the pandemic. There were only two black women in the marketing department. We have vastly different looks and personalities.

Having my ideas stolen by white women in the workplace throughout my entire career and them receiving the credit and not being able to call them out on it for fear of losing my job because I needed the money.

Realizing how oppressed and degraded I had become after consistently dealing with the white fragility of white women and every so often white men.

Dealing with white women in certain cancer groups who have actually said, “race doesn’t belong in the cancer space” and “not everything is about race.”

Being trolled and targeted on Twitter by racists because I began speaking up about it more and more.

Palpable cracks in my soul after seeing black men and women being murdered at the hands of white people over and over and over and over again with no accountability.

Discovering white people who I thought were friends and who I trusted let their racial bias and racists thoughts show, which has destroyed my trust in a lot of white people.

Watching an insurrection happen LIVE and seeing those racists being treated with dignity and able to just go home afterward.

Palpable pain, self-hate, unhappiness, and rage continues to runneth over.

I honestly didn’t want to write out the flood of thoughts that have been whirling in my head since the start of this year. Writing it down makes it real. I literally have tears in my eyes as I write this, and heart is pounding furiously because I am just so fucking tired of having to be ON all the time and never knowing who I can trust anymore. Now that the veil of oppression has been lifted from my face, how do I continue moving forward without hate seeping into all the cracks in my soul that have formed during my soon-to-be 45 years on this hateful planet?

Will I ever develop the ability to move past…

the darkness

the sadness

the hurt

and the rage.

Well, that remains to be determined.

What I can confidently say is I’m finally at a place professionally where my voice and ideas are encouraged, supported, and uplifted. I’ve never received that kind of respect before, and it feels strange yet deeply appreciated and comforting. I suppose miniscule steps forward are still steps to be acknowledged.

Until next time,

Warrior Megsie

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

A New Perspective on Infertility

I think many cancer patients/survivors grieve for some part of themselves that’s been lost to this horrible disease. When you add the loss of body parts or the body that you used to know, the grief becomes greater. Then when cancer makes you infertile when you’re still of childbearing age, there’s another type of grief that is palpable.

One of the hardest paths I’ve had to travel post-cancer has been due to the choice of having a child being taken away. Since I was intolerant of the medications to help prevent recurrence for pre-menopausal women, I had to be medically induced into menopause in 2017, so I could try the medications for post-menopausal women. Plus, during my pre-cancer days, I had ongoing issues with my cervix and ovaries – multiple abnormal pap smears and cysts the size of lemons on my ovaries. I had a bicornuate uterus which means it was heart-shaped, so high risk for miscarriages and premature birth.

It’s painfully clear that I would’ve struggled to get pregnant and/or carry a baby to full term. Do I want to live, or die doesn’t seem like a fair choice.

I had stopped blogging about my feelings on infertility because I would get so hurt when people would say, “just adopt or foster.” It’s such a callous thing to say even though I know they were trying to be supportive. I constantly wanted to scream that I’m chronically single!!!

I grew up with divorced parents where my mother had sole custody of me. I saw how hard it was to raise me as single, divorced woman. It truly took an amazing village to help raise and support my mother and I and know we were blessed to have such amazing support. That’s why I would never want to raise a child on my own unless forced due to a divorce. I’ve cost my mother a fortune, even as an adult.

I would never willingly adopt or foster a vulnerable child without being able to fully support them financially and emotionally. I physically don’t have the energy to handle raising a child on my own. I can barely keep myself afloat with medical bills constantly hanging over me and chronic pain that can often turn excruciating. How would that be fair to a child? They need more than just love.

The part I struggle with the most is the longing to share my childhood and college memories, values and wisdom with a child.

Fast forward to Friday evening when I was talking with my friend Francesca. I mentioned her a lot last year because we partnered together to write an abstract that we were selected to present titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers at the 16th Annual American Psychosocial Oncology Society(APOS) in Atlanta in February 2019. It’s honestly one of the proudest moments of my life post-cancer thus far.

Francesca & Megs at APOS Feb’19

Though I’m 20+ years older than Francesca, who is studying for the MCAT’s, she is authentic, thoughtful, brilliant and compassionate among other fantastic qualities. She floored me by saying she thought of me like a godmother, an aunt and a big sister rolled into one. She said I didn’t need to only think I can impart wisdom or share my memories and values with a child.

The way she said those words…her tone and inflection just touched my heart and gave me a new perspective on my infertility. As you can imagine, I was brought to tears but tears of joy and appreciation. Francesca was surprised I didn’t seem to realize that’s how she viewed me.

I had been so stuck on the grieving train thinking only about the loss of a baby or young child, I never thought about the true impact I could make and have apparently been making on an actual young adult outside the cancer world. I’ve mentored over the years but never had anyone say what Francesca said to me with such sincerity.

Yes, I still feel the loss of choice, but have gained a new and unexpected perspective on this loss.  I do have so much love to give and little words of wisdom to impart. I’m usually very observant but completely missed seeing I’ve been making a positive impact on someone for almost two years.

My life on the cancer train just took a lovely turn on an unexpected path which has given me a new sense of hope and purpose. Words matter. I see now that I matter too.