Part 2: Different Treatment Options and Hope For Chemo-Induced Peripheral Neuropathy

I have the chorus “I get knocked down, but I get up again! No one’s ever gonna keep me down!” by Chumbawamba playing on a loop in my head most days. I’ve referenced this song in previous posts because of the comfort it brings me. I seem to possess a natural resilience and consistently get back up and push forward when facing the never-ending challenges this world throws at me. I would be lying if I said it’s easy to keep kicking and feel hopeful.

I wasn’t sure if I would ever find new treatment options for my chemo-induced peripheral neuropathy (CIPN). I had begun to not only lose hope but fear was doing its best to cripple me. As a chronically single woman, I’ve been fearful of more falls occurring when by myself as I get older. The only reason I can almost grin when thinking about the grade 3 sprain I suffered from in January is that it was the first time I’d fallen and wasn’t alone. I had been walking with my realtor looking at townhouses when I went down hard. That dreamed dissolved right then and there.

So, as the winds of resilience push me forward, again and again, I was determined to find a specialist who could help with my CIPN. Lo and behold, I found one who not only listens but thinks outside of the box because he fully understands how debilitating and painful CIPN can be for cancer patients.

Meet my chiropractor Dr. Dan Ruitenbeek in Marietta, GA. His training is in clinical neurology. He’s the first specialist who wasn’t trying to shove medications down my throat or make me feel those were the only options. What many cancer patients with CIPN don’t think about or maybe even know is the lack of blood flow and how that plays into how severe or not the symptoms can be.

First, we had a consultation and he did some tests to get a baseline of the nerve damage in my hands and feet. With every little test, including thermal imaging, I was floored but also overwhelmed with emotion by what I was NOT feeling. There’s quite a bit of math involved, too.

Second, Dr. Dan reviewed the results of my consultation and laid out his suggested treatment plans. I knew there was major nerve damage, but the numbers did shock me.

Severe sensory loss category:

  • Right foot – 62.9% loss
  • Left foot – 60.0% loss
  • Right hand and Left hand – 45.7% loss

My new treatment protocol is a combination of both in-office and at-home treatments. The first three months are like a bootcamp of sorts to see what stimulations I respond to, the levels, and any unforeseen reactions.

***Disclaimer: This is my specific treatment and not for everyone. Everything you see below is based on the severity of my CIPN and prescribed by my chiropractor.***

Anodyne Therapy – At-home treatments 2x per day

Rebuilder Tub with rubber pads and electrodes – At-home treatment 1x per day

Conductive Garment Gloves – At-home treatment to help with my hands for 30 minutes 2x per day

In-office treatments – I receive stimulation and get help with blood flow.

Light therapy (not pictured) – In-office treatment

My back, thighs, and feet are wrapped (kinda like a baked potato) and I feel this heat from the pads. I do this for 20 minutes. Though I can feel the heat in my back (helps with lumbar facet joint pain), I feel some heat on my thighs and a minuscule amount in my feet. The goal is to help with blood flow to help gain some feeling again. One day (fingers crossed) I hope to fully feel the heat.

I’m still in the first month of all these treatments. It definitely takes planning to do the at-home treatments and time to go to the in-office treatments. Still, I’m hopeful that I will begin to feel small to moderate difference after my first three months. My treatment plan is for a full 12-16 months, which also includes eating foods to help reduce inflammation and cutting out other foods. This is a slow but intentional process.

If you want to know more about my chiropractor, location, and other offices, here’s the information below. Tell him or his staff that Megs referred you. I don’t get anything monetary out of sharing all of this information about my holistic treatments. I just want to give others hope by knowing there are other potential treatments that might help deal with the falls, pain, and lack of blood flow caused by CIPN.

Until next time,

Warrior Megsie

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

Layered Loneliness

I think back to the start of my breast cancer experience five years ago. The struggle to just survive the toxic treatments, multiple surgeries, blood transfusions, and complications post-treatment makes me wonder why am I still here? I was initially filled with such hope once I was officially declared as no evidence of disease – I refuse to say cancer free.

I am now infertile and in medically induced menopause well before my time.

I have fibromyalgia.

I have neuropathy in my hands and feet.

I have a bulging disc and slight tear near the nerve in my back.

And I discovered in January I have two benign lesions on my spine that need to be monitored.

I get so angry when I hear the following comments:

  • “Just be grateful you’re alive.”
  • “Cancer doesn’t define you.”
  • “Be happy you’re single.”

As I listened to various cancer conferences this month, the bulk of the female presenters often begin their talks with how they fought cancer to be there for their kids. Do they ever think about how crushing that is to hear as a single cancer survivor? I don’t mean anyone who divorced during or after treatment. I’m talking about the survivors like me who were single at the start of diagnosis and still single post-cancer.

When I think about it, I honestly didn’t have much motivation to “fight” to survive my cancer treatments. The main reason I did was for my beloved mother and cat Nathan (Natey) Edgar. That’s it.

I am single.

I often feel very alone.

I’m an only child.

My life post-cancer still feels quite isolating.

I don’t have many local friends. I know a lot of people locally, and have many acquaintances, but there is only one who I talk to weekly and would hang out with once a month before the pandemic. The bulk of my friends are out of state and in other counties. Many of them are married with children, or they have a significant other. I don’t really know many single and childless people – male or female.

I always hear that I should just get out there and date. Any guy would be lucky to have me. Well, I would say that would be a true statement, but my color makes dating tough. That’s a whole other story for another day. Now that I am in menopause and in chronic pain 24/7 makes dating feel impossible. The only time my dating life was pretty active, and fun was when I lived in LA in my early to mid-20’s.

I’ve tried so many different medications, surgeries, and supplements to help ease the pain, but nothing has fully worked effectively. What people don’t understand about fibromyalgia is being touched can cause horrific pain. It makes sleep difficult. It makes exercising difficult. It makes simply existing difficult. Then add permanent neuropathy in my feet makes walking difficult.

When I did try dating a little a year post-cancer, I remember one guy asked why I was walking so stiffly. I thought I could hide how painful it can be to even step onto a sidewalk or go up steps. I didn’t bother saying it’s due to cancer. Instead, I said I was sore from working out earlier that day.

How can I even think of dating when I literally cannot hide the physical pain?

Are there any single and childless cancer survivors who are also only children? It’s like lonely, on top lonely, on top of lonely. This is the one time being the only one isn’t an advantage.

Until next time,

Warrior Megsie

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.