Intractable PAIN? WTH?

September is Pain Awareness Month so it's time to tell my Alyson story.

A week before my precious friend Alyson took her last breath, she called me at 5:30 am, as had become our routine in those last weeks. “I wish I had written a book about pain. I wish I could have explained what I am going through to help other Breasties manage their pain.”??

At that point, her pain doctor had told her that her pain was intractable and that he could do nothing more for her. Intractable pain, we learned, is pain so severe, so constant that it cannot be treated, cannot be medicated, cannot be eased or taken away. When the doctor said?intractable pain?he meant?pain that consumes you.

...What the hell! What kind of concept is that? Aly’s worn out body had fought a war with metastatic triple negative breast cancer for two and half years. Frankly, the majority of those days were with pain.

?Alyson, a fierce force of nature, 47 year old accomplished business-woman, prolific writer, English Lit Ph.D., Fulbright Fellow, tireless triple negative breast cancer warrior and advocate, cherished mom, wife, aunt and sister, and my incredible caring and considerate friend, encouraged others in their fight until her last days. Even in her worst moments, she thought about how her suffering could serve other breasties.?

It’s not as if Alyson was a stranger to pain.?She was first diagnosed with stage 3 estrogen positive breast cancer at 34 years old, after just giving birth to her son. She couldn’t talk about that time period or how her hair fell out onto her newborn son without crying. “I didn’t know if I’d see my baby grow up,” she would say (a fear that hits me now in the pit of my stomach, lodges in my throat like a sob). She was put through the ringer—chemo, radiation, double mastectomy, lupron, tamoxifen. As Alyson described it: “They hit me with everything.” Given her young age, her doctor opted for the most aggressive treatment plan. But at least that pain?was temporary, contained.?

I didn’t know Alyson during her first battle with breast cancer. We met years later, after I had battled TNBC. She called me while I was attending a Friday night conference in Atlanta. I wasn’t happy about being away from home on a Friday night. In the middle of some?boring?panel, my phone rang with a number I didn’t recognize. I rarely answered my phone when I didn’t know the caller, but answering gave me an excuse to step out of the dull conference room.?A soft, sweet voice introduced herself, explaining how she had gotten my number from a mutual business colleague.Alyson was on the road that night too, away from ‘her boys’ (as she lovingly referred to her husband and son). We talked about work; she told me she needed a Black moderator for her market research. After sharing the details of the position and my own experience moderating, we?moved on to talking about our careers, our families, our kids.?We sat talking in our respective hotel bars for so long that we ended up ordering food and having dinner together over the phone. I think we talked for more than four hours. We had an instant connection, an instant shared girl crush.?After that night, we talked frequently. We did our first work project together a month later—that was the beginning of our sisterhood.

We celebrated Alyson’s ten year cancerversary in New York City in?2018. A Broadway director friend had offered me exclusive, pre-opening night tickets for a hot play starring Kerry Washington, so I invited a small group of friends: a few from my prayer group and several more from the TNBC Foundation board. This group of extraordinary women made up some of my strongest TNBC support systems, including women who also happened to?be?gurus in the TNBC community.?

We got all dressed up and went to 21?for dinner before the play. After the play, we met up with my director friend at the revolving bar at the top of the Marriott and stayed until they kicked us out at one in the morning. It was a magical night, with all of us cheersing to and celebrating Alyson.??

As we were waiting on the sidewalk for our Uber to the hotel, Alyson tugged the collar of her coat down to show me something.?

“Do you think I should get this checked out?” she asked me, turning her head away and holding her curly hair back so I could see a small bump on the side of her neck. “It’s been bothering me for a few days.”

It looked like a mosquito bite to me, but it was early November and too cold already for bugs.

“Yes,” I said without missing a beat.?

When the doctor called to tell Alyson that she had metastatic triple negative breast cancer a week later, she shouted “F%$K” in the middle of her?living room. “You’ve got to be kidding me.” I was the first person Alyson called after she hung up with her doctor.?

Just a few weeks after having met a close part of my TNBC community in the city, Alyson became a TNBC patient. I went with Alyson to her first round of chemo and gave her pink warrior boots as her initiation into the TNBC breastie community—the worst club with the best people, as she always said. She joined our weekly prayer calls and reached out to those TNBC gurus who had major connections to the best TNBC resources and doctors.

She went through seven chemo treatments, radiation, wound care, voodoo healing ceremonies, morphine (which did nothing), oxy and delotten, acupuncture, physical therapy, a psychiatrist for pain management… the list was exhaustive.?

?But at her core, Alyson was a lover of everything—more than anyone else I know, she could make lemonade out of even the sourest, meanest lemons. She wore purple wigs during chemo and purple hair dye in between rounds—the color of the TNBC Foundation and TNBC awareness. We spoke together at panels and attended conferences, frequently holding hands to get through the?harder parts of her story.?She fought to give a voice to the breasties around her in everything she did.?

When COVID hit, we talked FaceTime every day. I could see the pain in her face and hear it in her voice. Often, her neck was so stiff and sore that in order to turn her neck even a fraction, she had to turn her whole body. Her voice would become quiet and raspy.

“Do you hurt?” I’d ask her.

“Ya, I f$%king hurt,” she’d respond.?

After two and half years and eight treatments, she called me at 5am one day. "Ricki, I'm dying. I just can't take the pain anymore." I argued with her, "You are not dying! We'll find another clinical trial. We'll find another pain doctor." She said, "No! I'm done. I can't fight anymore." I don't even know how anyone makes that heart wrenching decision.

While she wasn’t quite lucid the last time I saw her laying in a hospice bed in her home, she woke just enough to sit up and hug me tight. Twenty minutes later she did the same thing again—sat up straight and wrapped her arms around me and held on.

Three days later, the medications that she needed to blunt the excruciating pain stopped her heart.?

I can’t know what it felt like to be in Alyson’s skin, to have felt the pain that she endured. After my double mastectomy, I felt like a truck had driven through my chest, backed up over me, and hit me a second time. During those few weeks the pain was unbearable without Percocet, which made me tired and not all there cognitively. I knew my pain would go away when my incision healed. Mine was a drop in the ocean of Alyson’s pain. But I have her words, her stories, our conversations and time together to know how she thought about her relationship to pain.?

Though I can’t write Alyson’s book, I was lucky enough to witness her extraordinary life, to be close to her brightness and brilliancy and, devastatingly, her pain. I feel her tugging at me, waking me up on rainy, overcast days and urging me to write, to finish what we started together. I will try to capture her words and thoughts here as a tribute to her legacy.