Palm Health Foundation recently provided a grant to Ali’s Alliance, a Palm Beach County non-profit that provides navigation support, guidance and resource connections through its online Cancer Directory. The Palm Health Foundation grant will help Ali’s Alliance gather more resources into the directory and to update the content of existing listings to provide the most current information possible to cancer survivors and caregivers looking for help, as close to home as possible, and at no cost to the family. Additionally, Palm Health Foundation’s support will help with community outreach to ensure that people newly impacted by cancer know this valuable resource is available.
The following article is contributed by Kelly Seitz, who sits on the board of Ali’s Alliance, and has lived experience and words of inspiration for all who are living with chemo brain or feeling the impact of our current times on their brain health.
“Your grandparents were called to WAR! You can save the entire human race by staying on your COUCH! DON’T SCREW IT UP!” Remember those amusing memes that flooded social media way back, circa March 2020? We all laughed and they were genuinely accurate given the 2-3 weeks we anticipated being quarantined. No one could have fathomed that 6 months later many would still be in the early stages of reopening. Our amusement gradually eroded as the pandemic inevitably impacted even the most stubborn and introverted among us. We’re all left constantly searching for that silver lining.
My thoughts over the past couple months have evolved into, “I can’t imagine going through it now.” The “it” I’m referring to consists of my medical adventures related to treatments for a rare & aggressive breast cancer, along with the subsequent long term side effects of those treatments. Most notably, for the purpose of this article, a pesky little devil known as, “chemo brain.” During the course of my treatment, I had a total of 11 reconstructive surgeries, and I can’t help but think of undergoing any of those during this global nightmare. Imagine being stuck in a hospital for days when no family or friends are allowed to visit you. Imagine having to go for weekly, or even daily, trips to medical facilities where the already stale environment is taken to a whole new level with people hidden behind the veil of protective equipment. It’s enough to unnerve anyone.
A simple trip to the dentist nowadays can make you feel like you’re living in a parallel universe, as even my mother recently discovered. My mom has long been retired and lives a fairly relaxed life, seldom significantly affected by these crazy times. She made a routine trip to the dentist and had an eye opening realization of the impact of COVID-19. She was surprised at how droll and saddened her typically upbeat dental hygienist had become, and I was struck by the extent to which the hygienist’s somber mood affected my mom. It becomes a collective sadness that blankets everyone who comes in contact with it. Human beings thrive on social interaction, some much more so than others. We’re not meant to be shuttered in place and isolated from each other. There’s simply nothing “normal” about it.
It’s easy to comprehend the added hardships of going through medical procedures and treatments during this science fiction movie we’re all living through. However, they’re the often overlooked, the “silent” ailments, that are most impacted by our current state of the world. Think of the adolescent whose mind races constantly from ADHD, your relative who deals with the ebb and flow of bipolar disorder, or your neighbor who’s a recovering alcoholic. Now imagine the frustration, anxiety, fear, sadness, isolation, confusion, paranoia, and whatever else you might be experiencing as a result as the pandemic, magnified tenfold. That’s what so many dealing with mental illness are experiencing. Among them in my community of cancer survivors are those with the aforementioned “chemo brain.”
So what exactly is chemo brain? In short, it’s the mental and cognitive side effects often caused by chemotherapy agents used to treat cancer. For me, the worst part was a bizarre case of sensory overload – not being able to concentrate and feeling like I’d spontaneously combust when in a room with a television running the background, birds chirping outside, a fan fluttering from the ceiling, and someone trying to have a conversation with me! It was almost a tangible feeling of overwhelm. Then of course, there’s the common issue of memory loss. Before chemo brain, I had what anyone who knew me would call the epitome of a photographic memory. Yet today, there are numerous events in my life that I have absolutely no recollection of, even when shown photographs. Technically speaking, chemo brain involves the wearing away of myelin – think of myelin as the colored rubbery insulation on a copper wire. It’s a sheath that covers nerve passageways in the brain and spinal cord. The craziest part is, there’s no rhyme or reason to it. Along one passageway you can have a significant lengthy break in myelin, then a few smaller breaks, then a long stretch that’s unaffected. Anyone dealing with chemo brain will tell you that’s a perfect visual representation for how the condition presents itself.
Consider this example: A few years ago, while running my own event management business, I was also working at a high-end department store to supplement my earnings. I worked primarily in the handbag department and often I’d have lengthy conversations with clients as they mulled over a purchase. I’d place a bag on hold for someone and they might come back in 10 minutes, only to have me look at them and ask how I could help (I had absolutely no familiarity with their face)! Once, a customer politely reminded me of the bag I was holding for them (bless people for being polite!) it was as if I snapped back into reality and recalled every minute detail of our conversation – and this happened time and time again. Albeit annoying and awkward, it wasn’t potentially harmful in my role as a sales associate, but you can understand why some cancer survivors in much more critical professional positions have actually had to change jobs due to chemo brain. The memory issues may only last during and shortly after treatment, but for some of us it’s a lifelong adjustment.
If you’re a recent cancer survivor experiencing any of the symptoms I’ve described, they might be overlooked by doctors, or even patients themselves, as simply being a response to our current upside down world. Sure, you’re crazy, but so is everyone else right now! However, months down the road when hopefully life returns to some semblance of normalcy, you might find yourself still in the throes of mental mayhem. That’s precisely my concern, for not only my fellow cancer survivors with chemo brain, but anyone experiencing symptoms of mental illness. Despite the chaos around us, now is not the time to sweep our troubles under the rug and hope it all goes away.
Compounding all of this is the reality that the sources we most often turn to for help are also in a tailspin. As with most things that ail us, fortunately there are solutions to tempering chemo brain. For me, modern pharmaceuticals and lifestyle modifications proved to be the magic combination. The challenge these days is that we so often find those solutions through others, largely via support groups – and as we all know, gatherings of any kind were one of the first things to be taken from us during COVID-19. For example, how does almost anyone who’s recovering from substance abuse achieve sobriety? Through the gold standard of in person meetings! I was recently gathering resources for a woman just diagnosed with breast cancer and it dawned on me how odd it was to be listing the web addresses for virtual Zoom support meetings. Granted, we are making the best of it with virtual initiatives and it’s certainly better than nothing. Yet, there’s no denying the inequality to in person interaction.
However, one of the coolest things about mankind is our knack for turning lemons into lemonade. Outside of virtual meetings, people have been interacting one on one and holding smaller more intimate gatherings. The inevitable change in our modus operandi has resulted in a greater emphasis on the importance of the simple act of connecting to another person. Possibly never before have we embraced the power of asking, “Are you ok?” and in turn, understanding that it’s okay to not be okay.
If you take nothing else from this article, remember the power of that simple act. There’s no shame in reaching out to one another. Check up on your friends, especially those with compounded medical challenges. As one who’s dealt with those challenges (both the more evident and “silent” ones), please know that while we may not respond right away, your actions never go unnoticed and are appreciated in spades. You might be the one person to keep this global nightmare from being someone’s personal nightmare.
Here’s to creating a new meme,.. “This pandemic sucks, but together, we make it suck less!” We are indeed stronger together. True to form, there’s your silver lining.
Article contributed by Kelly Seitz, Ali’s Alliance
