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

Don’t Thin Yourself

Once you receive a cancer diagnosis, you become increasingly aware of all the different cancer awareness months for all the different types. Just because I had breast cancer doesn’t mean I’m only aware of my type of cancer. If anything, I want to learn as much as I can about all the different types of cancers now that my body is open to a possible secondary cancer down the road.

I take this time to constantly educate myself and talk with others in cancerland to better understand their type of cancer and experience. The more I talk with others outside of the breast cancer world, I find more community, acceptance and humor. Though our cancers are different, there are many shared experiences which is comforting.

So, as PINKtober looms around the corner, I start getting requests to help with breast cancer awareness.  It’s difficult when people notice a skill that makes them want you to volunteer for everything breast cancer related. Instead of it being fun, it starts to feel like work, draining and stressful.

That’s how the thinning of oneself begins. People mistake my bubbly personality and upbeat voice as ready to take on the world. It’s almost like they forget that I’m still working fulltime with increasing responsibilities, which means using even more physical and mental energy during my 8-10  hour workday. So, driving to a volunteer meeting that adds another two hours to my day takes momentous effort.

The reality is most of the time I just want to stay home munching on peanut M&Ms while watching Dateline, Snapped and some other thrillers with a handful of dramas, a dash of comedies and a pinch of romance.

It’s fantastic to be noticed but at what cost? My body can’t handle stress the way it used to.

It needs more rest.

It needs more calm.

It needs more deep breaths.

Now that I’m in palliative care to help with pain management, I can’t do as much as I used to force myself to do before. Fatigue is overwhelming. I think people outside cancerland can’t fully understand that many of us aren’t just tired. When you’re just tired, it’s implied you can sleep and feel recovered the next day. Fatigue, with the added layer of pain, means there is no recovery or waking up feeling energetic. It’s another night of tossing, turning, groaning, never finding a comfortable sleep position and waking up feeling even more drained and quite cranky.

Time to speak up and say NO. Making myself a priority feels odd and selfish. I’ve had to retrain my thoughts to accept this is true self-care and not selfish.

I was at the Leukemia & Lymphoma Society Blood Cancer conference yesterday. I went last year and was blown away by the keynote speaker Dan Shapiro. So, this year, I wanted to bring my mother in the hopes of learning more about her rare blood cancer and give her the sense of community she craves but won’t admit she needs.

My naturally bubbly and talkative self couldn’t help but engage with others and the vendors. After all, I want to start getting more speaking engagements and writing opportunities that will lead to paid ones. One of the vendors asked why I was there because she noticed my favorite breast cancer ribbon barrette in my hair. I told her I was there for my mother and am a three-year breast cancer survivor and dealing with severe chemo induced neuropathy and fibromyalgia.

She said, “You don’t look unwell. You look just full of energy and healthy.” I always find that comment interesting, especially at cancer events. Don’t they realize the sheer effort it takes to appear energetic and “healthy?”

As much as I try to take my expressive nature down a few notches, I always end up thinning myself out. Naturally being a tad extra is exhausting once I come down off the high.

It’s just another reminder for me to practice more self-care and make it routine. I’ve only committed to a few events for PINKtober instead of everything like I’ve done in the past. Thinning myself out can easily mean another trip to the ER or with pneumonia like I was in April and May of this year. I’m not looking for a repeat of that.

Saying NO to volunteering for cancer events is our right and not selfish. Don’t let anyone guilt you into saying yes either. Be firm because you’re the one who must deal with the after affects and not them.