Tag #breastcancer

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World Cancer Day and Black History Month 2023

Warrior Megsie 2 Comments

Yesterday was World Cancer Day. I get emotional when I think about my cancer story and how doctors have consistently dismissed my pain and concerns. The thoughts running through my head about cancer and Black History month always make me want to scream in frustration.

We need providers, researchers, employers, friends, and family to

 SEE us

 HEAR us

 BELIEVE us

 RESPECT us

Going through cancer takes a HUGE toll on every aspect of our lives. Having to constantly push through barriers, deal with microaggressions from doctors, financial toxicity, career changes, infertility, and so much more is only part of MY story. I know I’m not alone in this.

Becoming an advocate was born out of my experiences and the urgent need to spotlight the issues of access to care and support. Whether you want to hear it or not, RACE, age, and how you sexually identify play an ugly role in trying to be heard and believed. I feel for the Black community, communities of color, the young adult community, and the LGBTQIA community.

Something else I want to spotlight is how I’ve become intolerant of cancer spaces where I am the ONLY Black person in attendance. I used to go to a weekly virtual happy hour that was born during the pandemic in the AYA community. It was something I looked forward to each week. There would be new people of color who joined once but then never came back. 

After the murders of Ahmad Arbery, Breonna Taylor, George Floyd, and the insurrection, I found it more challenging to be in spaces where I am the only Black person. I couldn’t continue going to virtual happy hours or journaling sessions and chitchatting about Disney characters, food, kids, etc. I felt like this country was on fire, and I had no community to honestly talk about the stress of being Black and how my nervous system was constantly in flight or fight mode, which exacerbated my pain from toxic cancer treatments.

I now understand why there are certain Black-only breast cancer groups. I have yet to find a general cancer Black-only group that’s a mix of men, women, and those whose pronouns are they/them. When I would bring this up in the other groups where I am the only Black person, inevitably, a white person felt the need to recommend “another strong Black person” to me. I shake my head because 1) I don’t need white people to suggest Black people to reach out to, and 2) The Black cancer space is extremely small, and we already know each other or of each other.

I’m tired of having to center whiteness.

I’m tired of not feeling safe to express myself fully.

I’m tired of being the only Black person in the room or on Zoom.

I’m tired of white people sending private messages saying I’m an inspiration but won’t state it publicly.

I always notice the Black people some white organizations ask to take part in specific panels, programs, or be guest speakers are the ones who don’t fully talk about how racism and microaggressions have shaped their cancer experiences. They often give diluted versions of their experiences. I’ve also noticed that I am rarely asked to participate in certain cancer activities when race is on the agenda because I refuse to make the white community comfortable anymore.

The more I learn about Black culture, the more I have begun to stop trying to filter the Black out of myself. I used to pride myself on being the ONLY one in the room. Now, it enrages me. As a Black woman, I don’t have the luxury of talking about trivial things when I see murders of Black people on TV or shot in grocery stores or killed for simply existing.

While I am thankful for the many genuine friends I have in cancerland, I am acutely aware that the majority are white. Being Black has shaped my access to care, access to pain management, and access to community support. It’s like what James Baldwin said in the quote I posted, the more I read, the more I understand.

Until next time,

Warrior Megsie

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My Back Pain Saga: Insurance Hoops, Advocacy & Victory

Warrior Megsie 1 Comment

This video is longer than usual because I’m trying to cram in five years of what it has been like living with intolerable back pain and all the insanity that came with it — the insurance hoops and having my pain dismissed over and over and over again truly crushed my spirit.

So, to celebrate my victory, I’m wearing this fabulously HUGE fascinator that is a gift from a friend. Watch my video for the cliff note version of my back pain saga.

I’m pleased to say my pain level is at a steady three, which is a bloody miracle! I haven’t had pain level this low in 5 years! I got extremely emotional last weekend and earlier this week just thinking about ALL I have endured because sooo many specialists dismissed my pain and fat-shamed me. The amount of advocacy I had to do to get to this moment is unacceptable for anyone!

All I want to do is sleep. My body is trying to catch up on five years of horrific sleep. Painsomnia is real and squashes quality of life. I honestly don’t know how I’ve been able to maintain everything professionally and personally with severe sleep deprivation. This nightmare has definitely aged me internally and externally.

Aside from getting the nerve ablation, one of the best things to happen is sleeping deep enough to dream and wake up without crying. People have told me that I don’t look like I’m in pain. Well, that’s why it’s called an invisible illness. Now that I finally have real back pain relief that will hopefully last for at least a year, I can now focus on my fibromyalgia and neuropathy pain.

Living with chronic pain can turn one into a shell of themselves. Plus, I’m single and have to do many things alone, which adds to my pain and stress. I honestly don’t know where this natural resilience stems from, but it somehow keeps me pushing forward. The smile on my face today is genuine and feels AH-MAZING!

Until next time,

Warrior Megsie

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

Warrior Megsie 1 Comment

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

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You Never Forget The Cancer Call

Warrior Megsie 5 Comments

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