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.

Cents & Sensibilities

It’s been a slightly difficult start to 2020. Toward the end of 2019, I spent hours on the phone with insurance, my primary, oncologist and doctor appointments fighting to get an MRI approved for my lower lumbar spine. Pleased as punch that I got my primary and oncologist working together as a team. It was a weight off my shoulders to have two exceptional doctors and a nurse advocating just as hard as I was to get it approved, especially during the holidays.

The good news is after being denied for the MRI twice by Cigna’s third party, my oncologist had a peer-to-peer discussion with them earlier this week. As of Thursday, January 2nd my MRI was approved. I was already organized and had rescheduled it two weeks ago for Tuesday, January 7th and will discuss the results and plan of action on Thursday, January 9th.

So, while I’m proud for advocating for myself along with my medical team, I’m still pretty pissed that I will be responsible for paying 80% toward my deductible since the MRI approval came on the 2nd. I truly do feel like Cigna did that on purpose so they wouldn’t have to pay because I had met my deductible and was $75 away from being covered 100% by the end of 2019.

It’s downright criminal that many of us must fight to receive the coverage and tests we deserve. Then we’re often stuck with huge bills that seem never ending.

A new year always brings added stress because of high insurance deductibles. Am I happy to have insurance through my employer? Of course, but it comes at a steep financial cost since I have to rotate between an MRI with contrast or an ultrasound every six months along with my diagnostic ultrasound + the cost of medications + copays to specialists. Me being me, I’m planning on fighting my portion of the MRI cost and file a complaint against the insurance. Sure, nothing will probably happen in my favor, but I must at least try for my piece of mind.

I do believe those pesky lesions on my spine are benign, but who knows what’s been growing there all this time since fighting with Cigna. Will they have to be burned off? Hell, if I know. Plus, will I have to get injections in the lower left side of my back to deal with this spondylitis? Will PT be part of the plan too?

All I see are dollar signs and scheduling conflicts as I move meetings at work to make it to appointments.

I’ve had people tell me to enjoy life, go on vacation and travel. I get so infuriated when I hear those suggestions. My insurance deductible through my employer is $6,500. How am I supposed to have fun and go anywhere or even save when that kind of cost looms over me? Getting critically ill is expensive and ongoing in the aftermath.

I want to go to different cancer conferences this year to meet more of the fabulous cancer warriors I’ve been talking to on social media but can’t take that kind of time off from work or have the extra funds since it all goes toward my high deductible. Yes, I know there are travel grants, but as I get older, I don’t qualify for some of those anymore. I’m at a weird age where I’m still “young” but not young enough to be eligible for some grants. Plus, I don’t have the energy to fill out applications once I get home from a very long day of working. I’m often mentally and physically spent.

As many look upon this new year as filled with possibilities, I’m already feeling the financial stress due to my health and the financial toxicity that is US healthcare.

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.