Change. Change is inevitable, happening daily and in the moment. A delayed flight, change in schedule, unexpected detours. Recently, SoCal had back-to-back earthquakes which literally shook us awake with no advance notice. As patients, we think, "What body will I wake up with tomorrow? Will the pain that was in one place now be in another place? Will my symptoms be better or worse?" We measure change in millimeters with every scan—smaller, bigger, stable. More, less, within normal range, out of range.
Some of this is within our control. So much is not in our control. Yet, we insist on resisting change, wanting everything to be the same, steady, manageable, predictable. This is where the conflict comes in – we’re trying to control something that cannot be controlled. As a result, we’re unhappy and we suffer.
As neuroendocrine cancer patients, many of us are looking for coping strategies. We need to learn to cope because this is not a quick sidestep through one medical procedure, but years and years of living with cancer. As I’m coming up on my 14th anniversary of being diagnosed in 2005, I’d like to share some of the coping strategies that have helped me throughout these years.
Making friends with change
The biggest change for most of us as cancer patients was that moment when we were told we had cancer. In a completely incomprehensible whirl of medical terms, many describe that moment where we stopped listening, frozen in this new reality and what it might mean. We may recall hearing that neuroendocrine cancer is a manageable disease. This is the beginning of a long relationship with change – change in our bodies, change in our perspective on life and what really matters. For many, it’s also the beginning of loss – loss of previous roles in careers, in the family and with friends.
Accepting what is -- Accepting change
Some may recall the name Ram Dass, author of “Be Here Now” first published in the 1970’s. Ram Dass coined the phrase ‘making friends with change’ and spoke about this back in the 90’s.
This talk addresses these concepts of allowing and accepting change as inevitable. Being in the moment and being present. Later, after Ram Dass suffered a heart attack, he writes again about accepting change, now living in a wheelchair, and one important point in particular about being dependent on others for assistance.
Practice: First, start by noticing when there is a change in your life. Notice how you feel when something unexpected happens, or something you thought would be one way is now different. Tightness, anxiety, resistance? Then try to relax and just be present to the change and notice it, allow it.
It could be worse
Recently, I heard a TEDx talk by Michael Eselun, oncology chaplain at UCLA Simms Mann. He spoke about compassion and related how so many people he speaks with find the framework of ‘it could be worse’ to be comforting. At least it’s not ________. Fill in the blank. It could have been ________, but it’s only _______. We all tend to do this reframing, and it does give a certain amount of comfort. Which is really gratitude disguised as ‘it could be worse.’ Thank goodness it’s not THAT. Many NET patients may have been told at the beginning of their cancer journey that neuroendocrine cancer is typically slow growing. The implied sentiment is ‘it could be worse,’ another more aggressive cancer.
As so many NET patients do, we go to the cancer center for our monthly somatostatin analog injections. It can be a difficult experience, seeing so many cancer patients of all ages. The ‘it could be worse’ thought always comes up for me, especially on months where I’m fortunate enough to get my shot and leave. I feel so grateful to just get my shot and exit the building, back to independent life.
As humans, we’re pretty adept at adjusting this sense of better and worse. What we might have thought of as unfathomable in our pre-cancer diagnosis life, we now are thankful for, be it a medication or procedure.
Finding Joy through the Door of Gratitude
After my initial NET surgery back in 2005, I would evaluate each day with two questions: Am I in pain? Can I eat? If the answers to these two questions were ‘no’ and ‘yes,’ I would declare it a good day! Learning to appreciate even the most basic foundations of pain and nourishment became my mantra. When everything is stripped away (as so much is post-surgery) and the healing process begins, it can seem like so much has been lost. Opening to a new perspective of appreciating what IS good can be life-saving. Appreciation for the small things such as breathing easily and walking slowly. The shift in perspective of actually focusing on the positive is life-enforcing.
Recently, I was sitting in heavy Los Angeles rush-hour traffic, not moving at all waiting to turn onto the Pacific Coast Highway heading north. Looking around, everyone appeared frustrated and agitated, honking to try to edge their way forward in competition. I was smiling from ear to ear, completely ecstatic to be sitting there in traffic and noticing the beautiful blue ocean more than the snarl of cars surrounding me. Just hours earlier, I had been discharged from a 3-day hospital stay and I was so grateful to be 'free,' driving and independent. I took notice of how I was likely the only one so happy to be in standstill traffic.
Perspective can alter our interpretation of what comes at us in life. It makes the difference in finding our way on any given day and choosing to notice the good versus the bad and experience joy. As someone who has been living with neuroendocrine cancer for almost 14 years, this distinction has become an essential ingredient in beginning each new day and sustaining the will to live.
Connectedness – Investing in our Relationship 401K
With all this uncertainty and living with the unknown, our priorities may shift. If you were to write down your top three priorities in life, what would they be? And in what order? For many of us, health and access to excellent healthcare is certainly one.
Living with neuroendocrine cancer, a rare disease, can present its own challenges. How do we find community? How do we find expert medical professionals who have experience with NET? In the absence of a general protocol, we are seeking answers from each other as patients and caregivers.
Coming together to relate our shared experiences can help take away some of the unknown and offer comfort. Learning from patients who have been living with NET for some years. For some, it’s learning how to manage the multitude of decisions. For others, learning how to live with cancer and be with children. Some partners lean in and become a true companion in the cancer experience. Others find it difficult to relate and pull away. Lifelong friends many not understand how to be there. And in many cases, we’re not talking about the urgency of a few weeks, but truly being there for years and years.
Essentially, we’re investing in a different type of 401K – our Relationship 401K. Finding our community through family and friends then makes so many of the other unknowns easier to manage.
Ultimately, we may find that what truly matters is our sense of belonging and connectedness. Especially when our former roles of belonging may have shifted. Psychologist and meditation teacher Tara Brach often speaks about belonging. There is research showing that people with strong community ties live longer. As cancer patients with a rare cancer, we may feel isolated. And confused as friends say “But you look so good!” Many cancer centers are recognizing the significant impact of cancer on social aspects of life and relationships. Some offer guides and recommend support groups. Some offer wellness classes and groups such as the GRACE program.
For people who are facing profound moments in their life, there is a way in which they will open to truth in a way that people who think they’re winning don’t. — Ram Dass
At LACNETS, we strive to provide a social home, a community where stories can be shared with others who can truly relate to all we go through with living with NET. Our monthly programs during the year often focus on medical information from NET experts as well as providing a place of gathering and time to meet new friends.
Written by Giovanna Joyce Imbesi
LACNETS Founder & Patient Advocate