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

You Never Forget The Cancer Call

I’ve been struggling with writing lately. It’s not because I have nothing to say or am uninspired. It’s because I have way too much to say and struggling to get my thoughts written down in a cohesive way. The perfectionist in me doesn’t want to write something awful, yet I need to release some of what has been on my mind lately.

My six-year anniversary of getting the cancer call was on Tuesday, September 14th. I woke up that morning with mixed emotions. It’s one of those memories that will never fade. The flashbacks are clear and packed with emotion. I was working at iHeart Media sitting in my cubicle on 9/14/15. I’d had the biopsy at 4pm on 9/11/15 which fell on Friday that year and was told it would take 48-72 hours to receive the results. I’m always aware of the time because of all my years working in media and making sure the commercials were the correct spot length. I remember looking at my phone when it rang at 3:05pm and not recognizing the number but knowing in my gut to answer.

“Megan-Claire, you have Invasive Lobular Breast Cancer. We don’t know the stage yet. You need to get a pen and paper and take some notes because time is of the essence.”

The entire trajectory of my life changed in an instant. Yes, I’m still alive and “survived,”, but many other warriors I’ve crossed paths with during these six years have died. Why am I still here and they aren’t? They had husbands or wives and children. I don’t. Survivor’s guilt is real. It’s important for people to not negate these feelings because the guilt is just as crushing as the loss of friends. 

I miss them.

I think of their families.

I wish I could’ve taken their place.

So yes, I’m still here but not physically or mentally the same. I’m chronically ill thanks to fibromyalgia, back pain, and neuropathy. I’m in pain every second of every damn day. Some days are manageable and other days it’s off the charts. I literally look like a different person (chemo curls are back) in a body I don’t recognize at all. 

Being naturally resilient is a blessing and a curse. Even when I don’t want to show up for myself I somehow always manage to push up and just do it. I’m fully immersed within the cancer space. There are days where I feel passionate about my advocacy and days where I am utterly drained. I have to continuously remind myself that it’s okay to put myself first and can say no to various requests of my time. That doesn’t mean I am selfish or don’t care. That is self-care.

For the first time in six years, I did not completely wallow on that day. You see, cancer cannot take away the essence of me, you or anyone. Ever. The one constant that brings me pure joy is the arts, specifically the theatre. So, I went to see a musical with another theatre friend that evening. It was the first time I had done something that literally breathed life into me. I fully enjoyed myself and felt the familiar feeling of walking into a theatre and feeling like I was home. It was an evening that cancer could not touch.

Until next time,

Warrior Megsie

Afraid of Experiencing Joy

Am I afraid of experiencing joy? Yesterday, I was listening to the podcast Small Doses by the exceptionally brilliant and talented comedian, actress, author, and businesswoman Amanda Seales. Her guest on this particular episode was Layla F. Saad, the author of Me and White Supremacy. When Layla was talking about her experiences as a black Muslim woman raised in the UK, she struck a painful chord in me when discussing the fear of joy. It’s something I have thought about over the years but never fully acknowledged within myself.

After cancer, the expectation by friends, family, coworkers, and even some other cancer survivors are to feel joy and happiness that you “made it” to the survivorship stage. I don’t feel joyful about being in this stage because I’m in more physical pain than I was during active treatment. I’ve tried so many medications to try and help manage the fibromyalgia, neuropathy and back pain, but none have brought any real relief.

How do I embrace joy when just breathing can cause ripples of pain throughout my entire body?

How do I embrace joy when getting out of bed causes me to cry out in pain and hold onto my cane for support?

How do I embrace joy when I don’t have a family of my own to live for?

As I struggle to navigate my way through the thick clouds of despair, frustration, anger, resentment, and pure rage, I do have fleeting moments where I’ve experienced joy. That’s the issue. The longest period where I experienced pure, full on joy was during my recent adventure in Zadar, Croatia where I met the amazing Ancora.ai team for a bit of business and tons of fun and team bonding. I experienced so many levels of joy that I was almost in shock by how light and happy I felt. Is this what life is supposed to be like?

When I look at pictures from that trip, I almost didn’t recognize my face because it was literally glowing from the joy I was feeling. There were no filters or spotlight used. I had not realized how weighed down I had become from dealing with

battling racism my entire life

oppression and microaggressions my entire professional career

feeling like I don’t belong anywhere

fighting to have my symptoms taken seriously by doctors

the reality that racism seeps deep within healthcare and certain Facebook cancer groups

not being able to fully be myself and be accepted

and

not knowing how to be joyful long-term.

Yes, I was scared to travel to Croatia by myself but also knew I had to do it. I needed to get away from the United States and see if I’d feel the same oppressive weight over there that I do here. I wasn’t followed in any stores. I wasn’t looked at suspiciously. In fact, some of the local people didn’t automatically know that I was an American. The waiters I met were welcoming and hilarious. I never felt pressured to hurry or make a rash decision. The entire Ancora.ai team were so lovely, compassionate, hilarious, caring, and brilliant. I didn’t have to compartmentalize any racist comments or feelings of being undermined in order to make it through the day. I could just be full on Megs/Megsie/Meggie/Megan-Claire without judgment. My laughter and sheer joy were real and not faked. I didn’t have to wear a mask. Is this what joy feels like on a consistent basis?

Unfortunately, as soon as I landed back in Atlanta, GA, I felt the weight of oppression, microaggressions, fear of police, and felt suspicious eyes on me. So, once again, my joy was fleeting. In fact, the joy in Croatia seemed almost too good to be true.

Maybe that’s why I’m afraid to experience joy long-term because I’ve never known life without having to deal with hurt, pain, despair, fear, frustration, stress, and rage. Yet, I have the right to experience joy more than once every blue moon.

I need joy.

I crave joy.

I deserve joy.

Damn it; I’m going to find some joy!!!

Until next time,

Warrior Megsie

Lemon Martini With A Twist Of Letting Go

I’ve always detested the saying, “turn lemons into lemonade.” I don’t like lemonade. A friend from the high school days came up with turning lemons into a lemon martini because that fits me better. I wholeheartedly agree.

I know it has been a few months since I last posted something original. Some good things have happened during this hiatus. Heck, I’ll even say some great things have happened! Unfortunately, some truly sad and upsetting things have happened too.

Is it possible to get through a month without trauma, sadness, rage, disappointment and frustration? I’m continuously thrown into the depths of despair because I expect too much of people and get hurt when they don’t show up the way I thought they would. The more I talk openly about race, the more I see the true colors of so-called friends who I never dreamed would have a racist bone in their body. I have officially lost the ability to trust and be vulnerable with people. When I say people, I am referring to white people because I only have four black true friends.

Of course, I know not every white friend will let me down, but I can literally feel my cloak of armor wrapping me tighter to fend off the possibility of hurtful words. To this day, I am most surprised by the racism within the cancer community. I naively thought the cancer space would be free from that kind of bullshit but sadly it’s not.

The more I keep trying to be my authentic self, the more alone and isolated I feel. I often feel like the only single person on this planet.

I no longer feel like a warrior.

I no longer feel strong.

I no longer feel hopeful.

This world continues to be so cruel and oppressive. I’m desperately trying to let go of past and current hurts and let offensive and racist words roll off my protective cloak. The harsh truth is there will never be relief while in this skin because racism will never end. It seeps into everything.

Until next time,

Megsie