I walked beside my husband, Gary, with late stage prostate cancer for several years longer than the professionals originally projected. Ten burbling, courage-fi…
In 1991, Glenn Sabin was a 28-year-old newlywed diagnosed with chronic lymphocytic leukemia (CLL)–a disease doctors called “uniformly fatal.” Treatments could buy him some time and eventually ease his discomfort, but there was no conventional cure. Glenn’s prognosis was clear: he was going to die.
Although Glenn and his wife, Linda, continued to consult with doctors, cancer specialists and top oncologists, Glenn made a monumental decision: he would become his own health advocate. While he continued to “watch and wait,” Glenn would figure out how to stay alive.
Click here to read an an excerpt of his story in his bestselling book, N of 1.
Over the summer I asked readers to share what they wanted most to learn about. Fear of cancer topped the list, and more specifically the fear of cancer recurrence.
While this may be my first time addressing this topic directly, in reality I have shared—in this space—my personal approach to becoming resilient, and about confronting fear.
I will get to that, but first let me be clear: If you or someone you know is grappling with the emotional distress of a new cancer diagnosis, greatly struggling while undergoing treatment, or suffering from an unrelenting fear of relapse, this individual should be seen by a social worker, psychologist or, in some cases, a psychiatrist. It’s important to find someone with extensive expertise and experience working with the biobehavioral needs of cancer patients and survivors.
Key organizations to coSeveral organizations offer professional phone counseling, online support groups, and educational materials (for free) to patients struggling with the fear of cancer and cancer recurrence. Those to consider include: The American Cancer Society’s National Cancer Information Center; CancerCare; Cancer Hope Network; and Cancer Support Community. (Readers outside the U.S. may be able to access some of these services, or obtain referrals closer to home.)
An acute situation, though often temporary, requires immediate professional help until stability is established. Even then the work is not done; cancer fear can become chronic. This is why it’s critical to fully engage the mind to positively influence a cancer journey.
Knowledge about your disease, and acts of self-empowerment, are the dynamic duo offensive for confronting cancer fear.
Everything I have written on this blog, leading up to and since my book was released, points to self-empowerment: taking control and ‘ownership’ of your health while confronting a cancer diagnosis and survivorship.
Understanding your specific diagnosis, prognosis, and chance of recurrence post-treatment, is vital. If you are in watchful waiting mode (disease is present, but immediate treatment is not needed), or getting ongoing maintenance therapy to manage existing disease, the same requisites of education and self-efficacy apply. This is made easier in the age of the empowered cancer patient. Knowing what you are dealing with helps reduce the fear of the unknown… knowledge is power!
I’ve always focused on healing, not curing, because in most cases the word ‘cure’ is elusive; not really all that helpful. A focus on healing relies on each patient more than just getting through a set of often grueling treatments—each of our choices can help ensure a durable long-term remission or periods of stabilized disease.
Your oncologist is the disease expert. You must become your own health expert. You are not your disease. You are hosting a disease. Become an inhospitable host by becoming your healthiest self— make the disease fearful of its host, and perhaps it will look elsewhere for refuge.
In addition to shifting focus to healthy lifestyle activities, a powerful response to counter the fear of cancer recurrence is to be grateful, mindful, hopeful, and present— and to apply the emotional intelligence to ‘respond’, but not ‘react’, to the negative words or actions of others. The key is to recognize but filter out negative thoughts— your own, and those thoughts and comments of others— to simply continue to be an inhospitable host in every way. Send certain thoughts on their way. Show negative comments the door. Instinctively know that every change to your body (pain, cold, temperature, lethargy) does not mean your cancer has returned or progressed.
This is not easy to put into daily practice. It takes time. It requires patience and perseverance to build a calm mind and reinforce resiliency. Engaging the mind to positively influence your cancer journey is powerful stuff; as powerful as lifestyle changes. I recently offered 27 ways to achieve this. There are sure to be some that will offer solution and solace.
It took about fifteen years from the time of my diagnosis for cancer not to be my first waking thought as I greeted each new day. Dialing back the fear of cancer takes time.
Every ache, pain, sniffle, or temperature variation triggered dreaded thoughts: ‘has my cancer progressed?’ or ‘has it returned?’
My disease, chronic lymphocytic leukemia (CLL) is, by definition, chronic. It didn’t require immediate treatment after having my spleen removed in 1991, shedding with it five pounds of leukemic cells. The splenectomy was a fix to a side effect of the disease, not an actual cancer treatment. The cancer was still there, in my blood and bones, but required no further emergency treatment. Because there was no cure—there was only ‘watchful waiting, or more accurately: ‘proactive observation’, as I would go on to coin it—‘proactive observation’ was the chosen management plan.
In my case there was no plausible option for a quick and effective resolution through heavy treatment to remission, so I would have to wait, and watch, and think… and think some more.
That was a major problem for a Type-A forward-leaning guy like me. Early on, it was all-consuming; an endless loop of anticipation, anxiety, and unmitigated fear.
It’s now been over five years since the documentation of there being no evidence of leukemia in my bone marrow and blood. I’ve stopped going to my hematologist for regular exams and tests, where the results of a complete blood count typically come back within minutes through an in-house lab.
Instead, I get my blood drawn during an annual physical by my primary care physician. My last one was just a few weeks ago; a wait of several days to get the results. But, my heart still skipped a beat when the email popped up letting me know that new labs were ready to view online. A cold band of sweat beaded along my forehead, and a knot gripped my stomach as I worked my way through the results.
I’m a positive person; I work hard at being healthy; but am realistic that CLL, with the exception of stem cell transplants for certain patients, is still considered incurable.
My complete remission of CLL was achieved using only lifestyle measures and natural products. There is no recommended follow-up strategy for where I am. No survivorship care plan has been discussed. I am in uncharted territory. And so, my experiment continues.
I breathed a huge sigh of relief after learning my blood counts remain normal. After all these years— 26 since diagnosis to be exact— it has been virtually impossible to completely shake cancer from my mind. For me it may never be possible, even after normal test results have appeared for many years.
Here’s the bottom line: those personally affected by cancer— regardless of their particular situation and where they may be on their journey— may, like me, never be completely able to block out fear, but there are innumerable self-efficacy tools available— as well as professional help— to get each individual to a better place.
This article originally appeared in Artsy Editorial on January 18, 2018. In a Baltimore basement, behind foot-thick walls, there is a room, and in that room the…
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