If you stop by this blog regularly, you may know that last summer I was diagnosed with breast cancer. Given how common cancer now is, it’s highly likely that you or someone you care about has been affected by it. It kind of stuns me to know that one in eight females born today will develop breast cancer at some point in her life, and that there is a statistical probability that 40% of the US population will get some form of cancer at some time in their lives. Cancer is something affecting so many lives, yet it seems that each person who gets it is in some ways on their own to navigate their way through it.
I’m about midway through the treatment process, and feeling pretty good most days. February brought the end of five months of chemotherapy. Next up is surgery (a lumpectomy and possibly removal of some lymph nodes). This will be followed by a recuperation period and then 6 weeks of small daily doses of radiation. I’m grateful that treatment is proving successful and I am so looking forward to the end of these 12 months since I was first diagnosed.
While I’m eager to be done, I don’t want to rush the process or distract myself from learning from it. Early on, a nurse expressed her wish to me that all would go well and that by this summer, I would have my life back. For some time, that’s exactly what I focused on. But now I see that I won’t be returning to life exactly as it was.
Taking time to to turn inward over these past five months has let me learn a lot. I find myself changed in some fundamental ways by this experience. There have been shifts in perspective and understanding that accompany the physical aspects of being a cancer patient. I won’t say I am grateful to have cancer. I am not. At the same time, some of these changes have strengthened me and brought me new understandings of self and others.
Both physically and emotionally, it’s as though there’s been a paring down process, bringing me closer to what is most essential – my true self, my relationships, my purpose in life. I feel closer to understanding what truly brings joy, how I want to spend each day, and how to persevere and even thrive in the face of personal and societal threats.
It’s hard to break down these sometimes subtle shifts and changes into specifics. I tend to feel it as “being a little different” or “seeing things a little differently” rather than as a dramatic before-and-after kind of transformation. I’ll do my best to describe what this is about.
Not a Hero’s Story
This is not a hero’s story, nor a story of battling cancer and defeating it. That was the initial metaphor I chose, maybe because it’s the one most commonly found in our culture. We’d like to think that a positive, kick-ass attitude will beat cancer every time. But that’s not the case, as the recent death of good friend Clare Siegel bears witness to.
I eventually adopted the Goddess Athena as my archetype. She is Goddess of Wisdom and Goddess of War, using strategy and logic, avoiding combat whenever possible. I draw from her an emphasis on strategies to reshape my life so that that my body is not hospitable to cancer. This means remaining realistically hopeful, and having purpose, vision, health and vitality. Cancer is not a strategic enemy. It is a malfunction of my own body. Surviving it is in part a matter of luck.Thriving as I navigate my way through the treatment and recovery process involves acceptance and adaptability, perseverance and resilience and taking an active role in regaining my health.
Luck is a goddess not to be coerced and forcibly wooed by those who seek her favours. From such masterful spirits she turns away. But it happens sometimes that, if we put our hand in hers with the humble trust of a little child, she will have pity on us, and not fail us in our hour of need.
I have the good luck to have a common and readily treatable form of cancer. It was caught relatively early and had not spread throughout my body. It is lucky that this is the era in which I have had to seek cancer treatment, a time when it’s better understood how to treat patients without destroying their quality of life. I can have minimal surgery, making recovery easier. The small doses of radiation I will get are spread out over a 6-week period, which is supposed to minimize side effects.
I am fortunate to live in an area with a number of leading medical facilities with expertise in breast cancer treatment. We have the health insurance and other resources needed to deal with the costs of treatment and of having to reduce my work schedule. At the time of diagnosis I was lucky that cancer aside, I was quite fit and very healthy. I have the luck of having several good friends who are cancer survivors. They and others have offered a tremendous amount of support ranging from frequent texts, emails, calls and visits to checking in from time to time to see how I’m doing. So many have offered additional help. I’ve been well enough all this time that I’ve rarely had to request that.
If tomorrow morning the sky falls…
have clouds for breakfast.
If night falls…
use stars for streetlights.
If the moon gets stuck in a tree….
cover the hole with a strawberry.
~Cooper Edens, If You’re Afraid of the Dark, Remember the Night Rainbow
I have had to submit myself to multiple medical exams, tests, procedures and treatments. It’s true enough that I’ve also been able to be an active participant in my treatment plan (more about that below). Doing this has called for adaptability in creating a way of being that supports a different way of doing. A tri-athlete I spoke with counseled me that instead of being frustrated by my inability to ride up a hill that I know I am fit enough for, I should give myself credit for what I am doing. She wisely said, “Don’t compare what you’re doing now to what you could do before. Celebrate what you are able to do.”
She encouraged me to be self-accepting and to allow myself to make changes that are responsive to my current capacities. I have applied this same approach to other areas of life: working, sleeping, eating, and socializing. All of these things have required me to accept changes and make adaptations.
I’ve come to accept and understand myself as a receiver of help, as a person who is at once strong and vulnerable. I’ve accepted the need to have some of the hardest conversations I could possibly have with others who I deeply care for. One of the toughest parts of this experience has been telling those close to me, “I have cancer,” and seeing them wince as these words took them into the same dark unknown that I, too, was in at the time.
I’ve had to accept facing deep fear: fear of physical suffering, fear of finding out my life is about to end, fear of permanent impairment, fear of loss of what makes life worthwhile. I am lucky (there’s luck again!) to be able to say that none of those fears have been realized. The “what-ifs” did not come to be. I am well aware that it might have been otherwise. There is one fear, though that will never go away, the fear that the cancer will recur, or that I’ll get another form of it. It’s a realistic concern and one that I have to live with.
I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.
Some of the learning has been very practical and tied to dealing with my diagnosis. Other aspects have been more deeply personal.
I had to learn enough to choose a cancer treatment provider. I did this by interviewing the professionals I encountered as I went through the diagnostic process. I asked my family doctor, my radiologists and their staff, “Where would you go if you had to be treated for breast cancer.” I spoke to friends who have been treated for cancer locally, too. I sifted through their responses to see which facilities and physicians came up most often. I checked to see which of these were covered by my insurance plan. I made a list of these, called each one and asked questions, to see how they handled those inquiries and to get a handle on their process for new patient intake. That process helped me decide to go to Greater Baltimore Medical Center, where my surgeons are Dr. Lauren Schnaper and Dr. Slezak, and my oncologist is Dr. Madhu Chaudry.
I asked questions about the planned course of treatment and sought out reputable internet sites and books to provide me with additional information. This helped me feel confident that I understood my treatment plan and the possible side effects of treatment.
Susan Love’s book, listed below, offers guidance on figuring out which Internet sites to trust, and what you can do if the site’s advice differs from your doctor’s (p 201). It also provides a helpful guide to choosing a medical team (p. 201-205).
I’ve learned a great deal more than I knew before about cancer in general and breast cancer specifically. Beyond that, I have learned, and still am learning what it means to live with any chronic disease, how “fatigue” is different from being tired or exhausted, and how that fatigue affects how you plan and carry out your work and social activities.
I’ve learned how to deal with my insurance company’s initial denials of some services and how to find out for sure what is covered and what is not. I’ve learned how to juggle appointments, adjust my work schedule and maintain my business while my energy is at low ebb.
I’ve learned how I respond to deep fear and stress. During the diagnosis and early stages of treatment I passed out twice. This never happened to me before. It turns out intense stress and fear can do that to you. I learned to anticipate that could happen and to take measures to prevent it.
I have learned that I can be at times unreasonably short-tempered and unpleasant to be around. I’m not proud of this (there goes the “inspiring hero” image for good!) but it seems to happen when I’ve reached the edges of my coping capacity and something pushes me beyond them.
I’ve learned about the depths of compassion and kindness in the world, a learning that is especially important now, when we are experiencing what seems to be an unprecedented surge of hateful acts in our country. It helps remind me that hate crimes and discriminatory executive orders are not our country’s whole story. It helps me hold on to the vision of the better world we can all create, that place in which we all can be better humans.
About Taking an Active Role
I knew I wanted to integrate acupuncture and herbal medicine into my treatment plan. Fortunately I already had a great acupuncturist, Kristen Lasor. Being a part of Tracking Wonder Quest brought me into contact with herbalist and healer Sara Eisenberg. Another member of my team, Ginger Wanko, is helping me stay fit and prepare for full recovery post-surgery. I called on these allies to help protect my body and psyche from the side effects of the necessary treatment. So many of my health care providers and friends have remarked, with some surprise, on how well I am doing and how healthy I appear as compared what they have previously seen. I can’t know for sure that this is due to the acupuncture, herbal treatment, and exercise but cannot otherwise explain these observations.
My treatment team emphasized that staying physically active, well hydrated, well nourished and engaged in life and work would be hugely beneficial in helping me tolerate and recover from treatment. I’ve made it my business to do these things and they may be contributing to my relatively good health at this stage of treatment.
It’s a balancing act, maintaining hope for the future while remaining grounded in whatever each day presents.
~Karin Marcus, Birding Through Cancer
From the moment I learned that I have cancer, I believed that I would ultimately be fine. I did not yet have any facts to tell me that; it was a gut feeling. My husband and others close to me supported that vision. The diagnostic and staging process ended up supporting it, too.
Holding realistic hope and a positive vision for the future has been a conscious choice. It helped so much that I asked others to refrain from telling me stories of people they knew who had cancer and for whom things did not go well. Those were not relevant to my situation and I did not want those images in my mind. Instead, I talked to survivors who are doing well in their lives, who could answer questions with truth, humor, and kindness.
When I hit a time when I was feeling overcome with dread, I sought out the services of Bunny Ebling, a licensed clinical social worker with Greater Baltimore Medical Center’s Oncology Department. With her help, I was able to find what past issues were being triggered by current circumstances. That healing experience let me reconnect with my stronger self, even in the midst of the toughest part of my treatment, and once again to find a realistically hopeful vision to steer toward.
I’ve checked treatment recommendations against my own preferences and values, and used all this information to participate in the shaping of my treatment plan. At times I’ve said “no” to things my health care providers wished to do. I based my decision on explanations of risks and benefits, and on what I’m willing to tolerate. Other times, I’ve said “yes” to things I wished I could decline, because I could see the limits of my own knowledge, and because it made the best sense.
While big pieces of this experience are out of my control, participating actively as much as possible gives a sense of confidence and personal power that, while possibly annoying to my health care team, is very necessary to me.
What Comes Next
This experience of living with cancer is still in progress. There is more to learn. There are new opportunities opening up that will ead to working more with others who have cancer or other chronic illness. There are celebrations to plan. One of them will be a week long bike tour this fall, if I’m able to get in shape for it. If not, it will happen later on.
Perhaps this glimpse of how I’ve been navigating my course as a cancer patient will be useful to you or someone you know. I’m well aware of the role of luck in all of this, so there may be ways my experience isn’t relevant to your own. If that’s the case, I hope that this has helped you in knowing that you aren’t alone. Perhaps the resources below will be of additional use.
Seasons of Change, Carol McClelland. Guidance for handling life’s inevitable changes.
Birding Through Cancer, A Seasons of Change Journey, Karin Marcus. Integrates what the Seasons of Change “looks like” into the author’s personal story of coping with cancer.
Writing As A Way of Healing, Louise DeSalvo. Guidance in writing to heal from emotional and physical difficulty.
Expressive Writing: Words that Heal, James W. Pennebaker & John F. Evans. The Pennebaker Paradigm for structured writing about past trauma or disruptive events, and five other types of writing for personal growth and development.
Between Knowing and Not Knowing Laraine Herring
Six Ways to Calm Yourself When Cancer Scares You, Kelly Indra Inselman
Dr. Susan Love’s Breast Book, 6th Edition, Susan M. Love
The Cancer Fighting Kitchen, Second Edition, Rebecca Katz
After Cancer Care, Gerald M LeMole, Pallav K. Mehta & Dwight L. McKee
The Anatomy of Hope, Jerome Groopman