I made another vlog yesterday but was too fatigued to post it last night. It’s still painful and difficult to type with my right hand as I wait for the thoracic outlet syndrome (TOS) to run its course through my right shoulder, arm, and hand. Going through breast cancer and all the other complications post-cancer caused financial toxicity and seriously derailed many creative dreams I had wanted to pursue. I was able to make a dream that I’ve had since my early 20’s come true last Friday.
So, sit back and watch as I share how I fulfilled a major dream in the world of voiceovers and some upcoming projects.
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
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.
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.
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
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.
Who is this amazing chiropractor? I’ll reveal that information along with my consultation results and new treatment protocol tomorrow!
It was five years ago today that I had my breast cancer surgeries at Northside Hospital Women’s Center in Atlanta, GA. I have officially reached the five-year mark, which is apparently a big milestone. I’m flooded with memories on the days leading up to my surgery day.
I had a blood transfusion two weeks before to help boost my system for the surgeries. To this day, I am pleased as punch to know my blood type is B+ and not O. I thought it was hilarious and would yell out “I’m B+” in my cheerleader voice. In fact, I still do it. Maybe it was watching too much True Blood on repeat, but I felt special knowing my blood type wasn’t the common O. Of course, I nearly vomited when I got the blood transfusion – two bags of blood. Those suckers were huge! I had one bag of O and another bag of B+. It’s a strange and thick feeling having someone else’s blood infused into you. I had many thoughts whirling in my mind.
What somewhat brought me down from feeling like an actress on Grey’s Anatomy was thinking about whose blood I was getting? I hate to say that my first thought and fear was what if the donor was a racist? Then I paused again and thought what if the donor was a serial killer? After six hours of having two bags of blood slowly infused, I was shocked when I saw my reflection. Had I become Bella from Twilight? My face, neck, and chest were flushed red. What freaked me out for a minute was seeing my eyes red. I kept looking for Edward on my way home. My humor has always remained intact.
Now it was surgery day. It was outpatient with no overnight stay. I was only a little nervous because I had complete faith in my breast cancer surgeon and plastic surgeon. They worked exceptionally well together. I can honestly say I still have a total girl crush on them. My breast cancer surgeon has major personality and humor, plus brilliance! She really helped me push through the last three chemo treatments when I was ready to give up. My plastic surgeon is the gentlest doctor I’ve ever dealt with and has magic hands. I never felt uncomfortable with him. As he came in to draw on the areas on my chest, his voice was so calm and gentle. He talked me through everything he was doing and made sure I did not look in the mirror. Smart move.
As I was being prepped for the surgeries, I had another laugh because the nurse put this silver aluminum foil looking blanket and cap on me. I looked like a bloated baked potato!
The only thing I remember before the anesthesia knocked me out was asking if I could keep my favorite chemo hat on underneath the baked potato cap.
Lumpectomy of left breast
Sentinel lymph node dissection
Reduction of both breasts
Reconstruction of both breasts
I wish I could say I woke up feeling just groggy. Nope! I woke up in excruciating pain and terribly nauseous. Then, one of the tubes I was hooked up with came loose because I felt something wet on my back. When I turned…the sheets were covered in blood. I got hysterical and started screaming. It took three nurses to calm me the fuck down. So, I was moved to a different bed and the pain went to a high that I pray I will never experience again. After two hours, the nurses were still having trouble getting the pain managed. They almost had me admitted into the hospital, but I managed to talk myself down from the ledge. I just wanted my own bed and my cat Nathan Edgar (Baby Natey).
This cancerversary brings mixed feelings that I will get into another time. I will say it felt good to write again since I have been on a hiatus for a few months. I definitely feel a much needed therapeutic release.