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

Aging Out on National Cancer Survivors Day

Here it is National Survivors Day and all I can think about is how I’m aging out.

I’m aging out of the AYA community.

I’m aging out of the dating game.

I’m aging out of this post-cancer body.

I’ve been in medically induced menopause since 2017. Going through breast cancer definitely aged my body but being medically induced into menopause shoved me all way into serious aging both internally and externally. The only part of my body that has never changed is the shape of my eyes. Everything else is no longer even close to what I used to know.

(Left to right)
Me 5 years ago on day of breast cancer surgeries; day after breast cancer surgeries; Me last week!

I posted a video on my Instagram earlier this week about my menopausal hair. I finally threw in the towel and got it severely chopped off after a year of trying to grow it out. I truly thought once the chia pet tight curls fell away, that I would look like myself again. Instead, my hair began to look stringy and thin. It literally stopped growing on the right side and in the back. I was beginning to look lopsided because the left side of my hair was going back beautifully. Getting this radical cut was an uncomfortable decision for me but needed to be done.

Me this week having too much fun with the app Easysnap!

There’s an illusion that we’re in control of our bodies. When going through cancer and having a chronic illness, it is plain to see I have little control over anything, especially my body. I had gotten back into exercising but suddenly stopped due to fibromyalgia pain in my back. It was so bad that I couldn’t sleep or move without wanting to cry. Now I’m back to trying to get motivated to workout. The belly fat is my nemesis. I don’t even want to take any full-length pictures because of my whale shaped body.

So, I’m aging out of many categories that used to feel somewhat natural and supportive. Instead of being one of the “young” ones in a group, I am often the oldest person in the group. Making friends as an adult is hard. Making friends as a single adult past a certain age feels impossible. I’ll be checking a new age box on my birthday which is July 3rd. This thought has thrown me into a complete panic and despair. The bulk of the people I know are married or living with someone and have kids. The few single people I do know already have a strong friend group. The wish to hang out with friends on a consistent basis is over. No one has time anymore.

Aside from having zero sex drive, I’ve become way to set in my ways to make room for a relationship. Heck, I had hard enough time when I had the hot body to find someone who didn’t look at me like an alien because I’m difficult to classify and don’t fit any typical categories. I continue to straddle between the black and white world without fully fitting into either.

I am five years no evidence of disease (NED). It just hit me this is the longest relationship I’ve ever been in. Will NED be with me forever? Do I want to live with NED with such a low quality of life? While my brain is sharper than it was five years ago, my body has yet to catch up. How much of this aging is natural? I think zero because I feel like a 544-year-old on a daily basis. I just don’t necessarily show it in selfies or on zooms because of acting. I win daily Oscars, Emmy, Golden Globe, and Tony awards.

Can anyone even tell when I’m faking and when I’m being real?

Until next time,

Warrior Megsie