Race and Cancer (part 1 of 3)

 

I spent the summer of 2020 being reflective of my own racist behavior, thoughts, and actions. The killings this year of unarmed Black people like George Floyd, Breonna Taylor and so many others have woken my consciousness about my own views, actions, and behaviors. For me to be a better person, an anti-racist person, I have decided I need to look inside, speak out, and vow to make change.  And so, I confess for the first time to anyone my first thoughts when I realized my cancer was “Triple Negative”.  

From the jump, I knew my breast cancer was “Triple Negative” (TBNC).  It was the first time it really sunk in there were different types of breast cancer – each defined by the presence (or absence) and the combination of  three known “markers” of breast cancer: hormone receptors (estrogen and progesterone) and an expression (or not) of human epidermal growth factor receptor 2, otherwise known as HER2. “Triple” negative breast cancer is a type of cancer that has NONE of the known receptors.

Decades of research and clinical trials, much of it in the last 30 years, have shown that each “type” or combination of those three factors contribute to the treatment plan, the “survival rate”, who is likely to get it, etc.  And so, like most of us longing for more information these days, I immediately took to “Dr Google” to research what that meant for me. Was it treatable? What was the treatment? Was it going to kill me? How did I get it? Who else gets it?

For the sake of today’s blog, we will be focusing on “who else gets it?”

According to a site I trust, breastcancer.org: “Anyone can be diagnosed with triple negative breast cancer. Still, researchers have found that it is more common in:

• Younger people. Triple-negative breast cancer is more likely to be diagnosed in people younger than age 50. Other types of breast cancer are more commonly diagnosed in people age 60 or older.
• People with a BRCA1 mutation. About 70% of breast cancers diagnosed in people with an inherited BRCA mutation, particularly BRCA1, are triple-negative.
• Black and Hispanic women. Triple-negative breast cancer is more likely to be diagnosed in Black women and Hispanic women. Asian women and non-Hispanic white women are less likely to be diagnosed with this type of cancer.”

Ok so well, I fit NONE of those “most common” characteristics. Nonetheless, one of the characteristics did stick out to me immediately: “triple-negative breast cancer is more likely to be diagnosed in Black women and Hispanic women.”

So, two thoughts. Of all the thoughts one can have running through their mind when diagnosed with cancer – I honestly had two come immediately to mind:

1) 1) Ok, so even though I’m not Black, I have been diagnosed with a type of cancer that is more common among Black women. And…(and here it is for all to read……

2) If the disease is known as a predominantly a Black women’s cancer, how much attention and research has been done to find a cure? How has this affected the availability of effective treatments? And, of course, what does all this mean for MY survival?

Look, I was scared to be in this group. Not because I did not want to be categorized or grouped with

Black and Brown women. Not because I did not feel as if I fit in or could relate with this group of women. But knowing how this country has historically treated people of color in general and specifically the lack of attention, research, and funding paid to diseases that are more common in people of color, and even more so for WOMEN of color - there was a very good chance in my mind anyways, that little may be known about MY type of cancer. And that, frankly, fewer research dollars, focus and thus the treatments would not be available to me in my fight with cancer because of it.

Bottom line: It is terrifying to be diagnosed with cancer. No question. It is every person's worst nightmare. But to be diagnosed with a disease more commonly found in Black women brings home just how racism can also have a potential horrifyingly awful affect on everyone, regardless of skin color - even this white, 55-year-old, BRCA negative, female.

Join me for the next TWO additional blog posts as I explore the facts, factors, and feelings around “who else gets” TNBC.

Time With an Old Friend in the Midst of a Pandemic

Ok, so I know, I know, we are in the middle of a global pandemic. And I know the fore-mentioned PANDEMIC is creating, uncovering, accelerating, and exacerbating anxiety.  For everyone. And for someone who is living with the experience of cancer, that anxiety feels like an old friend – on steroids.

You see, a cancer diagnosis comes with a friend. That friend is anxiety. Manifested on the

spectrum of “Am I going to die?” to “I am dying.”, ol’ buddy anxiety is always present and accounted for. It goes without saying (but no one says it to you), to cope with a cancer diagnosis, you MUST cope with anxiety.

“Is THAT a new lump?” “Why does my shoulder hurt?” “Has chemo affected my heart?” “How do I know it hasn’t returned?”  Sure, you can - and should - take up a myriad of measures to manage your anxiety: mindfulness practices, search for medications that help you, be truthful to your daily medications, increase your medications, etc., but your pal, anxiety, well she's always lurking around.

With the news 24/7 blasting out the horrifically sad number of humans infected with Covid-19, the even more devastating number dead, and each figure GROWING exponentially every day, I have been feeling that something is coming to get me. Much like an army of very bad things it is on the move and it will soon reach my home, infecting everyone in my family.People aren’t taking this seriously!Beaches are crowded!Too many people in one place!The Government is clearly inadequately prepared to manage this!We will all end up on ventilators - wait, NO! there aren’t enough ventilators – so, instead, I’ll die laying in a busy hospital hallway – alone.

Yep, that’s it. In a fucking terrifying nutshell, isn’t it? 

Early on in this pandemic, I found myself falling back to my mental place post treatment. After being pushed gingerly – albeit cold turkey – out of the comfort of the chemotherapy stage (hovering nurses, consistently comforting and encouraging as I made my make way through the weeks, months of chemotherapy) and into a new normal life without a safety net. A new normal life that is accompanied by uncertainty and fear. And that’s where I met anxiety.

As my tool box of anxiety management skills develop, I have enjoyed a long-distance relationship this past year with anxiety. Unfortunately, and without invitation, she's now flopped on my couch in the day time and creeping under my bed at night. She’s been particularly annoying since late February and she’s shifted into 4^th gear-with-a-tail-wind, pain-in-the-ass house guest as of mid-March. My chest is tight, my breathing is swallow and quick, my heart rate has settled into a dizzying, quick-as-a-bunny rate. I feel as if I will going to pass out or have a heart attack. I sleep like shit. In short, I am a mess.

Look, I don’t have a magical cure for anxiety in the face of a global virus pandemic. There is no simple answers on how to manage the feelings and fears at a time like this. Most of us have never experienced anything like this in our lifetime. But I know, after going through a very grueling cancer treatment protocol - and now living with knowing the disease could return to kill me at any time - the ONLY thing I can count upon to manage my anxiety adequately is ME. 

So that army? How can I possibly stop that army of bad things from coming for me? Well, it turns out I have command of the best and the only defense needed – yep, me. I practice meditation every day. I never skip a day. I purposely focus and calm my mind. It feels comforting to be able to quell my thoughts when everything else around me seems bat-shit crazy. I make use of the medications afforded to me and I’ve increased their dosage and frequency when I need to. 

I have the ability to build and sustain a fortress of safety around me and my loved ones by washing my hands, physically distancing, wearing a mask, staying home. These are the things I’m told by medical professionals will keep the army of bad things away. So, I do them. My family does them. Doing them gives me some sense of control over a crazy, fucking time right now.

And I listen to my wife. She sings to her mother - now kept from family visits and hugs, she sits alone in a memory care facility in update New York - via FaceTime every Friday. And that – that gives me hope.

 #KeepRooting4Me #KeepRooting4AllofUs #StayHome

Feet.

Feet. The word brings up an emotion, a feeling, a smell…. A thought. Come on, you know it. Say it with me.....Feet.  

I don’t personally care for feet. I understand most of us have two, most of us use them to get around. And therefore, kinda important, I just don’t care for ‘em. Don’t want to see feet - mine or yours. Anywhere. Or any portion of 'em. Like toes. A "no open-toe shoe" policy is in every Employee Handbook I've ever authored.

So, I have a beautiful toe I’d like to introduce you to. A big toe. More specifically, my big toenail. On my right foot, actually. “She” (if you don’t mind) didn’t get out of the gate like my other nine toes. Nope. The nail on my right big toe from my earliest memories seemed discolored, odd, different. It looked for most of my childhood like it would just fall off. But the skies parted sometime around my high school years, and my toenail “cleared up”. Yep. She eventually fell in line and looked just like my other toes. Great. Ok, let’s move on. Remember, no open-toed shoes. Ever.

So why introduce you to her? Well, she’s not just a big right toenail. She represents renewal, resilience, persistence, survival. She reminds me to be grateful. She makes me smile. She gives me a sense of normalcy. She has become an important element and signal of my recovery.

Each of my fingernails turned black during chemotherapy. It was known, potential side effect of Taxol, which I had infused every week for 12 weeks. As a precaution, my team suggested I use tea tree oil on my nails each evening and like a champ, I was faithful. Still, my fingernails turned black. All of them.  I was certain they would all fall off and I would be forever left with these nail-less, finger stubs. Not to be left out, one single toenail joined the dark, shadowy team. Yep, you guessed it…my big right toenail. The rest of my tootsies looked fine. Other than a pestering, sometimes clumsy numbing due to neuropathy or being victim to “hand and foot” syndrome – blistering and soreness - courtesy of my “extra credit” chemo, Xeloda, they looked “normal”. All but my big right toenail. It, like my fingernails turned black, just a nasty color. And like my fingernails, I hated looking at it. Collectively, they reminded me that something horrible had happened to me. That a poison, powerful enough to burn through hospital linoleum flooring, had been infused into my body for 38 of the 52 weeks of 2017.

I painted my nails (actually Liz painted them for me) when I cared enough to hide them. To not look at them – or to keep from anyone else looking at them. My hands looked dirty. It was comfortable for me to be in public. Not having hair was far easier to accept then having black fingernails. Gratefully, within months of finishing my treatment, my fingernails began to clear up. I was convinced they would just fall off in my sleep. I’d wake up, find them in bed sheets, and be that nail-less-stubby-fingered cancer patient. But like a phoenix rising from the ashes, my nails evidentially came back to looking “normal”. Today my fingernails are brittle yet oddly thicker, and weirdly shaped if you look closely, but to the average Josephine they look fairly normal. 

Then there’s my big right toenail. Like a shrine to the power of all things chemo, it remained black, a bit greenish - 30 months post chemo. Really thick as it had lifted up off my nail bed, easy to catch on socks. Pushed down by the top of my shoe, often sore. A constant reminder of what I had gone through. Just another reminder of cancer.

After 2 years of “black toe”, I decided perhaps this is NOT normal side effects of chemo and something else may be amiss. Nail infection? I didn't know. I just wanted it to be something other than cancer. Something other than a permanent reminder of cancer. Actually, I just wanted the damn thing to just fall off. But at this point, I would be ok with a diagnosis and prescription or an over-the-counter ointment to make it go away.

Tests were negative for any infection. My podiatrist shaved and trimmed it down to a reasonable size using electrical Dremel-like instruments and a pair of clippers similar to what I use on my bonsai. She hadn’t seen anything like it. Didn’t know what to do with it. So I returned to the hope it would just fall off.

Look, it may not seem like a big deal. After all, it was just one toenail. Covered 90% of the time with either socks or shoes – remember, no open-toed shoes allowed in my house. But for me, it was how I started and how I ended every day. Looking at my feet. And to be reminded of an awful time of my life. Of the effects of an awful time of my life. Constant. Reminding me of that awful time. How can I possibly escape reminders of cancer?

So, when my big toenail recently began to change. Began to look like a big right toenail ought to look. I was delighted. Over the moon, to be exact. Three years post diagnosis. Can’t describe it actually. Today, I look at my right foot and I see nothing ordinary. Nothing out of place. Nothing odd. Nothing. It makes me smile to look at my right foot. All toes, all toenails look like each other. Look like they looked “before”. My nail has a pink color to it, like the others. The thickness and soreness have dissipated. I have cried over my right foot. Cried because it seemed I couldn’t shake the physical affects of cancer. Look, I will never again have breasts, I will always get those looks from folks staring at my chest ink, peaking from my shirt, and wondering – trying to figure out - what is missing. I’ve made peace with that.  But I hadn’t resolved my big right toenail.  

So there. May I introduce you to my big right toenail. Say hello! She represents renewal, resilience, persistence, survival. She reminds me to be grateful. She makes me smile. She gives me a sense of normalcy. She has become an important element and signal of my recovery. Remember, no open-toed shoes allowed! Onward! #KeepRooting4Me