Published on July 6, 2017
"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
That phrase, from the Serenity Prayer, proved to be so valuable to me when I first learned my mother had a stage IV lymphoma, and ever since—even though I don't consider myself a religious person, and I haven't been to a Sunday church service in decades.
For years, Mom had itchy patches of red skin and many diagnoses of non-cancerous conditions. By the time she was diagnosed with an advanced form of cutaneous T-cell lymphoma in September of 2015, more than 80 percent of her skin had become covered in what appeared to be a dark red sunburn that was not only very itchy, scaly and constantly peeling (she described herself as the "Abominable Snowman"), but also very painful. She couldn't control her body temperature because so many cancerous cells were clustered in her skin, and the disease was also in her blood and lymph nodes. The dermatologist at Yale University Hospital who confirmed that mom had "Sezary Syndrome" advised us to prepare for a roller coaster ride, and it didn't take long that ride to begin.
Within a few days after starting an initial treatment regimen prescribed by the dermatologist, my mom's skin had become so angry and unbearably painful, perhaps because of a reaction to the treatment or because of the disease itself, that she felt like she was burning in an inferno. She called our dad, who is her primary care partner, and my three siblings and me, to her bedside at home, and she begged us to allow her to cease all treatment and to let her go. It was the most shocking and devastating moment in my life. Grasping for an appropriate response, I recalled how helpless I felt to alleviate her suffering. Then I thought of how much faith Mom had in God. With tears in my eyes and a quiver in my voice, I told her that her life was in His hands, not ours. She gently nodded in agreement and lay down to try to rest. Then I thought about the Serenity Prayer.
Dictionary.com defines serenity as "the state or quality of being serene, calm or tranquil." I wondered how anyone could possibly be calm in this situation? I knew that it was entirely normal and appropriate to feel upset, frustrated, anxious, angry and sad—among so many other emotions. But I also realized that if I wanted to help myself, my mom and our family, I needed the serenity to accept the things I couldn’t change and I needed the courage to change the things I could. But how I could I find the wisdom to know the difference?
I was eager to learn about the disease and treatment options, and I thought that maybe if I could focus my emotions, time, energy and efforts into becoming an informed advocate and communicator for my mom and dad and our family, then maybe I might find some wisdom.
Immediately, I began searching on the internet and found the Cutaneous Lymphoma Foundation—an incredible resource for patients and care partners, with immeasurably valuable information and help. I joined an email support group and Facebook groups that helped patients with similar types of cancer. I called a close friend who works at one of the top cancer centers in the country to get his advice on questions to ask my mom's oncologist, who we would be meeting for the first time in a few days.
Then I found the courage to contact patients who were in a clinical trial that I saw was open and recruiting patients with my mom’s type of cancer, to ask about their experiences: What was it like for them to join a clinical trial? How did they respond to the treatment? Did they experience side effects? Would they recommend that mom consider joining the trial if that was possible? I also found and spoke with two Sezary Syndrome patients who had received stem cell transplants, as well as one of their care partners, in case that might be a treatment option to consider. They were all very generous and open with sharing their experience, strength and hope.
In those few days leading up to my mom's first appointment with the oncologist, I went from feeling nearly helpless and hopeless to helpful and hopeful! Empowered with lots of information and a long list of questions, I joined my mom, dad and sister-in-law Vivian on that first appointment with Doctor Francine Foss at Yale.
After reviewing mom's blood test results and examining her skin, Dr. Foss indicated that the cancer was aggressive and suggested that she start on an infusion treatment that had been approved by the FDA in 2009. That’s when I asked about the clinical trial I'd read about and whether it might make sense for mom to try that. Dr. Foss immediately responded that she thought it would be a great idea if mom qualified, because she had seen some great results in patients who participated in an earlier phase of the trial.
After additional blood tests, a skin biopsy and other information determined she was qualified, Mom entered the trial about two weeks later, and so began the next turn on the roller coaster.
Because it was a Phase III trial, patients were randomly assigned by a computer to either the new treatment - which we were desperately hoping for—or an existing treatment that the FDA had approved several years ago. Unfortunately, Mom was randomly assigned to the FDA-approved treatment. The "good news," the doctor advised us, was that if and when the cancer progressed by at least 25 percent while on the trial, Mom could then switch over to the new treatment.
Disappointed but not deterred, I taped a copy of the Serenity Prayer to the refrigerator in my parents’ home, as a regular reminder for all of us. Then, I started a CaringBridge.org blog about mom’s experiences on the trial to keep our extended family and friends apprised and engaged. After every visit with Dr. Foss, I posted an update, along with a recent photo of Mom with a visitor. So many people commented on the blog with amazing posts of encouragement for Mom and our family. Others responded with visits, freshly prepared meals for Mom and Dad, thoughtful cards or meaningful gifts. One family member created a beautiful painting with an inspirational message of hope, while a close family friend hand-knitted a blanket to keep Mom warm when travelling on the 30-minute ride to Yale.
About 12 weeks after entering the clinical trial, after many bouts with nausea and mixed results on the FDA-approved treatment, frequent visits at Yale with Dr. Foss, and finally a substantial increase in the percentage of cancerous cells in her blood, Mom was able to switch over to the trial drug. That’s when the “roller coaster” really took some dramatic turns.
While the infusion of the trial drug was uneventful, the ride home a few hours later was a different story. Suddenly, perhaps because there was so much cancer in her blood for the treatment to attack at once, her body experienced a significant “infusion reaction,” that included severe chills, nausea, hip pain and a headache. So we rushed her to a nearby hospital, where she was given a steroid to halt the effects of the infusion, and admitted for overnight observation. By that time, though, the clinical trial treatment had already killed so many cancer cells in her body that the majority of the disease was gone from her blood. The next day, she felt great,looked amazing, had very little redness in her skin, and no more itching, peeling or pain!
Unfortunately, because of her body’s reaction and the overnight hospital stay, the clinical trial protocol stipulated she could no longer continue to receive the infusions. We were devastated. Ironically, just when Mom was showing improvement, she had to leave the trial. Once again, I turned to the Serenity Prayer, because I realized that worrying about a decision I could not change was not going to help anyone, including me. Two weeks later, Dr. Foss recommended that Mom try the FDA-approved treatment she had originally recommended, prior to Mom entering the clinical trial, and we agreed. Then something wonderful happened.
Within a month after starting that treatment, in March of 2016, Mom went into a complete remission! For more than 15 months now, she’s had no sign of cancer in her blood, skin or lymph nodes. Was it because of the clinical trial treatment? Or the treatment mom received after she left the trial? A combination of both? Was it an intervention from God? Maybe that's not for us to know. But I do know this: Mom is living each day to the fullest, one day at a time, and that is something I'm now trying to do with my life.
What a ride it has been since Mom received that diagnosis of stage IV cancer. I’ve learned so much about the strength of character in so many people, including my mom, our incredible immediate—and extended—family and friends, and myself. None of us knows what tomorrow will bring. But we do have serenity, and we have hope.
Hope is the most powerful gift of all,
Mike Grayeb, Care Partner and Patient Advocate
Founder and Administrator for Sezary Syndrome Facebook page
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Your site is AWESOME! Thank you all so much for this incredible resource to families who are in crisis/affected by cancer.