Part I: Why Isn’t Chemo Induced Peripheral Neuropathy Taken More Seriously?

One of the scariest things about receiving chemo is not knowing how your body will react. I was hit by a motherload of side effects from 4 Adriamycin and 4 Cytoxan and felt like those would kill me. So, when it was time to begin 12 Taxol, my oncologist said the side effects would be a cakewalk compared to what I had just been through while on AC. I distinctly remember sighing with relief when she said it would be easier to tolerate.

My oncologist also said that chemo-induced peripheral neuropathy (CIPN) might occur while on Taxol but not until around the 8th treatment or so. She said any CIPN would more than likely be mild and go away. I wish that had been the case. What happened next was something no one could predict or prepare for.

It was December 2015. I was beginning to feel drowsy from the Benadryl that was infused through my port before receiving the Taxol. My fabulous infusion nurse began to slowly infuse the first Taxol treatment. After about 15 minutes, something terrible happened. The best way to describe it was a strong current running through my entire body. I literally felt my nerves dying. I started freaking out and my infusion nurse called for my oncologist.

The CIPN happened so suddenly and so severely that there was no way to stop it or slow down the reaction. That moment changed my life and not for the better. The CIPN damage has been so bad, especially in my feet, that I’ve experienced the following:

  • Severe numbness in my feet to where I have no feeling from the ball of my feet to my toes
  • Sharp and stabbing pain in my hands
  • Permanent handicap sign
  • Multiple falls
  • Sometimes walking with a cane
  • Difficulty buttoning clothes
  • Difficulty putting on earrings, bracelets, and necklaces
  • Constantly dropping everything from dishes to medicine bottles
  • Grade 3 sprain in right ankle in January 2021

My experience with CIPN isn’t unique. It appears that many oncologists aren’t seeing it as a priority to address since their main focus is to keep us alive. Many don’t seem to worry about the painful damage and severe side effects of chemo. I was never referred to a specialist once I had reached the survivorship stage. Instead, gabapentin was thrown my way. I was told to take L-glutamine and B12. I was given topical ointments. None of those worked. I only received PT after the grade 3 sprain I had in January of this year which did help a little with my gait. Not one specialist ever took my CIPN seriously. They never even did any testing to determine how severe my nerve damage was and just kept throwing medicine at me or dismissing me outright.

The downstream consequences of chemo need to be talked about more. Just because cancer and chemo treatments didn’t kill me doesn’t mean I should continue suffering from the side effects. There are no robust programs in cancer centers for neuropathy, at least not in Atlanta, GA. My oncologist and the rest of my medical team have failed me. How?

  • Failed me by not sending me any referrals
  • Failed me by not addressing the actual nerve damage and lack of blood flow
  • Failed me by thinking the CIPN would go away on its own

I had given up hope for a long time until last month. What has changed? I made the decision that I needed to find a holistic way to help deal with not only the pain of CIPN, but ways to manage my fibromyalgia, and pain from my left lumbar facet joint.

I found a chiropractor whose specialty is chemo-induced peripheral neuropathy, not just diabetic neuropathy, and other traditional treatments. I went for a consultation and my mind was blown. Why?

He actually believed me.

He was concerned for me.

He treated me with utter respect.

Here’s another hint of another one of my multiple treatments with the disclaimer these may not be for everyone with CIPN.

Pic on the left is from today and pic on the right is with Dr. R from last week!

Who is this amazing chiropractor? I’ll reveal that information along with my consultation results and new treatment protocol tomorrow!

Until next time,

Warrior Megsie

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

Toggling between grief, depression, and happiness

***Trigger Warning***

I’ve been toggling between being in a very dark place and remaining in the moment lately. There have been many reasons to feel excited, happy, and like I’m truly using my talent the past few weeks.

· Began acting classes at the Alliance Theatre and faced my fear of chemo brain affecting my ability to memorize lines again.

·  My latest blog piece on WebMD was featured on their main page for 1 ½ days earlier this week.

·  I was in a fashion show for Macy’s in Buford, GA with some other cancer survivors/patients.

·  Met up with a cancer friend from the Elephants and Tea community who was in town this week.

So why am I still struggling to keep the darkness at bay?

I’ve had suicidal thoughts in the past. I’ve battled depression since high school. I acknowledge there is scary darkness within and work hard to push those thoughts away. So far, my sheer will, and stubbornness have kept me from stepping off the ledge. I’m a huge proponent of therapy. I’ve been in therapy off and on for years. My current therapist has helped me push through some fear, shame, and insecurities that have been holding me back, so why do I still feel these breakthroughs and accomplishments are fleeting?

I think grief + depression isn’t talked about enough. There are so many layers of both. One minute you think you’re handling things pretty well and even feel some joy and like a weight has been lifted. In the next moment, you’re in a puddle of tears and struggling to get out of bed and face the day. The palpable grief of loss and the overwhelming feeling of depression continuously seek to suffocate and crush me. I often question the point of my life, even when things are going well.

September and October are particularly difficult months for me due to major losses and tragedies that have happened. They throw me down the rabbit hole of grief and depression.

·  The 6-year anniversary of the cancer call was September 14, which changed my life forever.

·  The anniversary of a personal tragedy is this month.

·  Mourning yet more friends who have died from stage iv cancer.

·   I’ve been medically induced into menopause officially four years now.

Almost every speaker at a cancer conference or any conference, especially when it’s a woman speaking, always talks of how their husband and kids keep them going, etc. Well, I have neither, so what is the point of me pushing through the struggles in my life? I don’t have a legacy to pass down. The items I’ve saved and treasured since I was a child through college mean nothing to everyone but me.

I get ticked off when I mention this to people who have a spouse and kids and they say no one cares about the sentimental things and to just toss them. I think many miss the point. To me, it is the story that I want to share with every picture or sentimental item because it’s about my life. I’m an only child. I don’t have nieces or nephews. The realization that my name and memories end with me is a continuous gut punch.

I still don’t physically recognize myself. I consistently struggle with this unnatural chemo-induced curly hair that has made a comeback thanks to more hair falling out due to a certain hair product reaction. I’ve been struggling with my weight since my mid-30’s thanks to all the different antidepressants, hormone changes, and now induced menopause. Then add all the steroids from chemo and the many, many surgeries and steroids post-treatment, no wonder I’m presently the size of a southern whale!

When I make the statement the right man for me doesn’t exist in this life, it makes others uncomfortable. I know it would be different if I fit into a category, but I’m deemed “too different” by the bulk of men. Black and white people have said this basically my whole life.

I continue to deal with chronic pain, weight gain, unnaturally curly hair, soul-crushing loss of what can never be, and what I didn’t know I wanted until all my lady parts were removed along with zero sex drive. Existing in this Black skin, in this country, and in this body, adds an even deeper layer of grief and depression that I don’t have the energy to address at the moment.

I honestly don’t know why I keep going to therapy. I suppose it’s my natural resilience to keep pushing forward. Still, the enormity of these permanent and unwanted changes literally sucks my breath away.

And now I’m going to wake my cat Baby Natey (Nathan Edgar) up because I need a hug.

Until next time,

Warrior Megsie

A True White Ally

I received You Are Your Best Thing: An Anthology edited by Tarana Burke and Brené Brown and card from my lovely, supportive, and compassionate friend Shannon earlier this week. The Black authors who contributed to this anthology are extraordinary and so raw in sharing their experiences of being Black in this society. It has taken almost the entire week before I had the right headspace to begin reading it.

I feel an avalanche of emotions topple over me after reading the introduction and the first four stories. My head is spinning, tears drying, and heart is still pounding.

I must thank Shannon for sending this to me because it is not something I would’ve bought on my own. To be honest, seeing Brené Brown’s name on it made me hesitant to even open it at first. Once I read the introduction, I appreciated that Brené acknowledged that some Black people would feel this way and she and Tarana addressed the reason for this collaboration and both explained the dynamics of their friendship.

The fact is, Shannon reads my blog, my social media posts, and takes time to check on me and really talk to me about racism and how she’s worked toward acknowledging her own white privilege. She’s heard the brokenness in my voice, has seen the pain and exhaustion on my face, and continues to reassure me that she IS a safe white ally and genuine friend.

She knew I needed a different kind of support and keenly aware that she should not be that person for obvious reasons. I’ve expressed countless times through conversations and through my writing that I don’t have many Black friends and have always struggled with accepting my own Blackness and experiences. It’s what prompted the blog piece I wrote called Mixed Fragility last year. Much of my existence has been where I am the only Black person in the room, in the company, at the table or on the stage.

2020 was a pivotal year for me because it’s the first time I truly began to be afraid to drive alone, live alone, go into the store alone. I also felt a newfound sense of rage and brokenness that differs from all my previous feelings and entered a period of wanting to rise up and express the hurt and confusion I continuously feel for being in this skin.  

I’m about to make another cup of chai tea and read a few more chapters because this is the first time I can honestly fully relate to parts of these Black experiences shared. These Black authors are exceptional, and I can feel a tender pull of togetherness and understanding from their words. I used to think I was the only one who felt such rage, self-hate, and shame.

Through action and from a place of respect, Shannon let me know that she stands firmly by my side as not only a white ally and anti-racist, but also as a genuine friend.

Until next time,

Warrior Megsie