Life in Limbo
Lethargy finds expression in a yawn
No words or symbols–this heaviness
swallows all that is colorful
The world in light and dark
before diagnosis and after
No treatment for dormancy
spirals outward in gray arcs
leaves flashes of awareness
then slinks into corners to hide
or emerges unbidden in the night
Reluctant to embrace reality
I struggle with uncertainty
Only nature’s balm restores
A cardinal offers redness to a bare branch
Lime colored leaves wave at a gray sky
Sunlight sparks rainbows in water drops
Life forever changed
(Valerie Vickers, 2009)
Each person blind-sided with a cancer diagnosis, including Chronic Lymphocytic Leukemia (CLL), has a story. It often involves shock and grief, as mortality becomes real, even when told CLL is a “good” cancer that may not need treatment for years. A CLL patient is monitored as a “watch and wait” patient until treatment becomes necessary. This “watch and wait” period is as important to chronic cancer patients as treatment options are for active cancer patients, yet very little attention is given to living with chronic cancer. I challenge the cancer community to research the psychosocial support needs of CLL “watch and wait” patients and their caregivers and to fund studies that offer lifestyle and dietary choices that may prevent further spread of our cancers. I believe some studies are underway about the role of exercise with CLL. I look forward to the results.
Being diagnosed with CLL is not on my radar in 2009 at age 60. It is found after a routine blood test with a new doctor who notes the increase in the percentage of lymphocytes. I am shocked as I am in good shape physically because of being a Master’s swimmer, although I have experienced a swollen lymph node that resolved itself.
Over the last nine years, I have moved and been an oncology patient in three university-related hospitals and one regional oncology office in the Triad and Triangle of North Carolina. My blood count numbers remain stable with the white cell count vacillating between 11-13,000. I am seen once a year. I am experiencing some symptoms, such as more fatigue, lower iron numbers and more sinus infections; however, I don’t believe I am close to treatment.
Recently, I attended two information seminars on CLL offered by the Leukemia Lymphoma Society and the CLL Society, in conjunction with Duke University. Both provided me with good information that I can use to educate my primary care doctor and family members. Some practical things that have not been shared include how bug bites and shots may affect the body. When I get a tick bite, I get a nasty rash and may need to be treated by a dermatologist. Chiggers can cause a systemic reaction that looks like poison ivy. Flu shots now cause a huge knot in my arm. CLL patients should not be inoculated with “live virus” vaccines. This information is important to add to the CLL Forums.
Below are samples of information that were not helpful that I received during oncology visits over the years: “CLL is a good cancer to have and may not affect your life much.” “You may not want to tell people you have it.” “You are in the “middle bucket” for the disease to progress; it will probably need treatment after five years.” “Don’t take Vitamin C as it makes cancer cells grow (later I found this was bogus information.)” “Isn’t it great that you don’t have toenail fungus?” “Your immune system is working at 75-80%.” “The reason your disease isn’t progressing is because of your swimming.” “Keep doing what you are doing because it seems to be working. (This refers to the supplements I take and my work with a naturopath, yet no one seems very interested in what those supplements are.)” “Would you like to try some drugs for anxiety and depression? (Actually, psychotropic drugs do not agree with me.)” I am holistic in my approach to all disease and feel the “fix it with a drug” remedy for anxiety and sleep issues are not addressing the general lack of support for CLL “watch and wait” patients.
When I was first diagnosed, cancer groups that involved art, writing and yoga were meaningful (Hirsch Wellness Network, Greensboro, NC); however, I soon realized that my situation was very different from those in active treatment. I didn’t feel I fit into the cancer world, because I’m not sick nor am I being treated. I also don’t fit in the “cancer free” world. It is like living in limbo, wondering what to say or not to say. Having CLL affects all relationships, including my relationship with myself. I have not found a counselor who really “gets” this part. I am grateful that the CLL Society is trying to set up a support group in this part of North Carolina because I think face-to-face sharing with others in the same boat would be of help.
In addition, I find many people want to ignore that anything might be wrong. After all, CLL “watch and wait” patients don’t appear to be sick. Consequently, I have learned the most about living with cancer from talking with survivors who are in remission (but still worry that cancer may come back) or to cancer chaplains who acknowledge the spiritual crisis that chronic cancer evokes. As such I’ve sought ways of coping that feed my creativity and invite spiritual reflection. My work with a naturopath helps me look at the whole body which is much more helpful than the reductionist view of looking just at the cancer. Each of us is more than her disease.
However, I realize that disease and death are part of life, as is living with uncertainty. Buddhist Nun, Pema Chodron’s Comfortable with Uncertainty has been one of the most helpful books for me. “The Work” by Byron Katie offers a method to forgive myself and others when the going gets tough. The Little Book of Gratitude by Robert Emmons invites me to stay in touch with all the wonderful parts of my life, such as walking in the woods with my husband and dog or playing with the grandchildren. Poetry allows me to put into words my feelings of despair and hope and everything in between that live simultaneously. I also enjoy gardens and volunteer in my community and with the North Carolina Botanical Garden.
What I want from my oncology team is good communication and an understanding that I expect a more holistic approach to my disease. I know about many herbs that work better than antibiotics. I’d like to share that information. Quality of life is more important than quantity of life for me. I want honest answers to my questions about what to expect and how this disease might impact other physical problems that arise with aging. I want encouragement for the things I am doing to stay healthy. Also, I need advice about how to get family and friends to wash hands and take good care of themselves, so that I don’t catch their illnesses.
Finally, I hope to affirm the journey that other “watch and wait” survivors travel. We have different paths that need respecting. I want us to harness our courage to demand more research into the quality of our lives and into preventing the spread of slow-growing cancers. The oncology community needs to develop a support system tailored to the needs of “watch and wait” survivors and their caregivers. More money needs to be spent on our behalf, as well as on treatment options for those who need it. Let’s acknowledge that a CLL diagnosis is real, whether it is treated or not. I appreciate that the CLL Society, Inc. is an ally in this endeavor.
Valerie Vickers is a retired science teacher and Earth educator. She lives in the woods outside Chapel Hill, NC, with her husband Paul Mitchell. She is a grandmother of four and dog lover. Her passions include reading, writing, gardening and swimming. She has traveled extensively to share messages of Earth care. In 2003 she earned a PhD in Foundations of Education: Curriculum and Teaching from UNC Greensboro; her dissertation is entitled An Exploration of Ecological Identity: Education To Restore the Human/Earth Relationship. She has worked with herbs and natural ways to support the body for over 20 years and believes that human health is intimately connected to the health of the Earth.
Originally published in The CLL Tribune Q2 2018.