November 10, 2005 at 11:00am is clear as day to me. The sights, sounds, people and place when I was diagnosed with cancer is like a tattoo on my brain. I was in the office of an Ear, Nose and Throat specialist as he removed the stitches and examined the 2 inch, 10-day old scar on my neck slightly to the right of my jaw and just underneath the ear lobe. He was admiring his handiwork and how the surgery incision had been made in such a way that it was camouflaged by a very slight neck wrinkle. “You’ll never see the scar,” he assured me. I was staring at the pale green ceiling and then turned my head slightly to the sound of the crinkling white exam table tissue in order to look in the hand mirror. My husband was holding my hand. All looked great after the removal of an enlarged lymph node that had already been needle biopsied as benign. Even still, I could feel the butterflies in my stomach, a dry mouth and my heart beating out of my chest.
The test results were not in my file and so the Dr. crossed the room and picked up the tan wall phone with the twisted chord to call the lab. He briefly inquired about my test results, thanked the technician and hung up. Walking toward me while nonchalantly announcing “Well, it looks as if you have Hodgkins Lymphoma” was how I received my diagnosis. I audibly sucked in my breath and the tears and sobs came easily and freely. My husband hung his head, and something was said about passing me on to an oncology team and that I needed to schedule that right away and that all the questions I’d have would be addressed by the experts and the treatment would be standard and the receptionist would help me with the appointment and take all the time you need before you leave and take care.
Cancer-related Post-traumatic Stress (PTS) is an anxiety disorder. PTSD is most often associated with traumatic events such as war, sexual and physical attacks, natural disasters, and serious accidents. But it can also affect people with a history of cancer. One aspect of the cancer experience that is considered a traumatic event is being diagnosed with the disease.
What transpired thereafter was what I now refer to as physical and mental assault. There were the initial appointments at the cancer center to include an MRI for staging, blood work, meeting the oncologist and radiologist with information about the treatment plan, and then sitting down with a mental health counselor assigned to my case. There would also be a session with someone in the medical billing department who would go over my insurance benefits and what my out-of-pocket costs would be for all of it and to include ABVD chemotherapy sessions (replacing the standard, more toxic MOPP treatment), 30 external beam radiation treatments, and an eventual PET scan. Maybe two. Along the way there would be more blood work, medication trials to manage the pain, and medication to preserve ovarian function. There would be days and nights of severe physical pain as the chemotherapy ran its course through my body. Low blood counts would delay each chemo treatment, and peripheral neuropathy would disturb my daily functions and sleep. Weight loss would be inevitable and most of my long, dark, thick hair would fall out.
And then one day, six months later, I was done with treatment and ‘cancer-free’. Yet even though I had had all the protective factors in place that lessen the possibility of PTS -- like good social support, clear information about the staging and treatment, and an open relationship with my care providers -- I developed PTS through conditioning. Neutral triggers such as sights, smells and sounds were paired with painful and traumatic experiences beginning at diagnosis and throughout the treatment phase itself.
Cancer-related Post-traumatic stress symptoms may start within one month of the diagnosis and treatment, yet also develop over time and later causing anxiety, stress, and fear even when they occur alone and after the trauma has ended. These symptoms cause significant problems in social or work situations and in relationships. They can also interfere with your ability to go about your normal daily tasks. Symptoms are generally grouped into four types: intrusive memories, avoidance, negative changes in thinking and mood, and changes in physical and emotional reactions, and sometime lifelong triggers.
The intrusive memories came first. Feelings of intense nausea would just happen when I drove by the cancer treatment center on the way to the grocery store, for example, and I’d smell the room and feel the IV in my arm and hear sounds. Or phantom feelings of the ABVD chemo chemicals cursing through my veins. Jolts of a tingly electrical feeling traveled down my spine when I’d drop my chin to my chest and I’d flashback to the 30 times that my face and head were covered in a mesh mask and bolted in place on the radiation table while I prayed a mantra so that I didn’t have a panic attack. And the soft stuffed animal gifts that I’d cuddled in times of pain became reminders of my personalized trauma — eventually to be thrown against the wall and then in the trash.
Then came the changes in relationships and social networks, and feeling detached from friends and family. The fear in most people’s eyes, the pity in their voices, and the platitudes of asking me to let them know if there was anything they could do, drove me to isolation. And a divorce from a 25-year marriage eventually happened. As if something just clicked, my husband’s entire persona just changed one day and toward the end of my treatment phase. He was physically there, but not there anymore. He had come to my initial diagnosis and one chemotherapy session, but nothing after that. All of these changes in relationships resulted in losing trust in others and in thinking the world was a dangerous place.
.
The entire cancer experience is an event that is typically not under a person’s control, and it impacts people in different ways and on a spectrum of mental and physical assault — and for some an ambiguous timeline that has no finality in sight. It’s been twelve years since my diagnosis. To date my cancer and any secondary cancer has not returned. I still struggle with certain things, yet I do have an awareness about life that draws upon my truths and an openness to being good to myself. I’m simply grateful that I’m alive and able to enjoy life mostly on my own terms now.
. . .
[DISCLAIMER: I wrote this diary from the perspective of a cancer patient and survivor / thriver, yet also as a licensed mental health counselor. That being said, I am in no way associated with the professionals and / or treatment methods cited below either personally or professionally, and I am not endorsing these persons or any products these persons may sell. The treatment examples are not intended to be offered as therapy or medical advice. Each of us has the responsibility to seek appropriate treatment for any mental health or medical condition that we believe will benefit us in our personal healing journeys.]
There are many different treatment options for persons suffering with PTS and many different ways to work on the symptoms. Some will be rid of symptoms completely. Some will experience fewer symptoms or symptoms of less intensity. It can be difficult to know where to start in seeking treatment. It may be necessary to seek support from a licensed mental health provider who is trained in trauma and pain practices.
For me my work started with mental health and wellness and the intrusive thoughts and images as these were most frightening and debilitating. I chose meditation and cognitive restructuring as treatment options.
- Guided Meditation — Meditation work can be done alone, yet I would recommend initially working with a therapist, or a small group. In my private practice as a licensed mental health counselor, I conduct very small workshops (3-5 people) drawing upon guided meditation and for persons who are experiencing an unquiet mind or who are unable to stop the doom and gloom thinking or negative perseveration and hopelessness. Some of these people seek individualized therapy after the workshop, and for some the small group experience is enough.
- Reality-based Thinking — This is one method in cognitive restructuring (learning to understand your thinking and make changes when necessary). This work required the help of my personal therapist, yet it was extremely effective in showing me my irrational thinking about: cancer, the cancer industry, the work that my cancer doctors and caretakers were trained to do yet that I had mistaken as purposefully hurtful, body betrayal, agreeing to undergo treatment that poisoned my healthy body, perceived threats from the oncologist who told me if I didn’t do the standard treatment I would never see my grandchildren, my disappointment in the old, wise pharmacist who convinced me to take the pre-chemo drugs when I told him I wasn’t going to do another round of chemotherapy and had chosen to die instead, and the victim mindset.
My work continued with relationships and social networks. As my mind quieted and I worked on living a more peaceful, present life, many persons were not fitting in my world as they were contributing to my constant hyper arousal and unhealthy emotional reactions to anything and everything. I needed companionship from friends and family, and I needed to interact with colleagues, yet I was paralyzed about how to fulfill these needs. I chose to study personality patterns of thinking and participate in support groups in hopes of understanding and rebuilding my networks.
- High Conflict People — I came to identify a few colleagues, friends and family members as high conflict people. High conflict people have life-long personality pattern of thinking, feeling, and acting where they avoid taking responsibility for their problems. Time after time, they argue against feedback, regardless of how helpful and truthful it may be. And time after time, they try to persuade others to agree with their rigid points. The issues come and go, but their personality traits keep them in conflict. Their problems remain unresolved and the stress on those around them often increases. I found this to be extremely empowering as I made difficult yet necessary changes. Bill Eddy’s work with HCP in the workplace and in families is extensive.
- Quiet Revolution — Susan Cain’s work on introverted personalities helped me to understand that I felt most alive when quiet and alone for extended periods of time, and not because I was retreating or isolating myself from anything dangerous or threatening out of fear or anger or anxiety. Honoring this newfound understanding was critical to managing my PTS symptoms.
- Support Groups — An ah-ha moment came to me one day when I was on the phone with my sister, and who happened to be a trauma nurse. Early on she took on the role of talking to me about all things medical and mostly unsolicited. Even though I was appreciative, I just wanted her to be my sister. I had to stop entertaining any medical talk with her into my recovery and beyond, and so I decided to join a local support group. I only stayed in the first group for a short time, yet it led me to another group of cancer survivors struggling with PTS symptoms. The group dynamics created a sense of belonging that helped me feel understood and less alone when I was in that limbo state of trying to find new friends, and restructure my professional and family relationships. Complete strangers became my safe companions. Even though support groups were helpful to me, I chose not to participate in any kind of marches or campaigns for cancer. To date, the pink movement is a trigger and it makes me angry.
Along with the mental health and wellness work of PTS, there can be work on physical health and wellness, too, such as sleep hygiene, diet and supplements, lifestyle choices and exercise. Each of these aren’t directly related to PTS management as much as they are in learning about and embracing life in healthier ways and that take care of the physical aspects of the body. Even so, I’m a firm believer in the mind-body-connection (PNIRS) and its direct impact on quality of life, disease, and longevity.
~ ~ ~
None of us chose the Cancer Club. It chose us. And what a bizarre, scary and amazing club it is. If this diary has encouraged you to look at your cancer journey or the journey of a friend or loved one through the lense of PTS, or if you have been diagnosed with PTS, please share what you’d like in the comment section. If this diary has caused you to experience anxiety or panic and you need help, please call 911 or get to your nearest emergency room for support.
May you be filled with lovingkindness; may you be held in lovingkindness.
May you feel safe and at ease.
May you feel protected from inner and outer harm.
May you be happy.
May you accept yourself just as you are.
May you touch deep, natural peace.
May you know the natural joy of being alive.
May you find true refuge within your own being.
May your heart and mind awaken; may you be free.
(adapted from Tara Brach, PhD)
Monday Night Cancer Club is a monthly Daily Kos group for anyone who has cancer, has a loved one with cancer, or who has questions, issues, or information to share about cancer, including clinicians, researchers, or others who have a special interest and can help to educate our readers. We have many different members who fit all these categories, sometimes more than one at a time. Please share if you can, or just listen; there is plenty to learn just from reading our extensive catalogue of past diaries and postings. All are welcome to use this group as a resource. Volunteer diarists post the first Monday of each month between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to cover physical, spiritual, emotional and cognitive aspects. While most diaries focus on a specific topic or area relevant to cancer, each diary is also an Open Thread for sharing concerns, announcements, and information. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Anyone interested in writing a diary for the Monday Night Cancer Club please just let us know. We generally publish the first Monday of the month.