“My survival alone was a miracle.” Diagnosed in 2002 with a life threatening head and neck cancer, Liam Ryan’s doctors told him he should have never survived.…
Dr. Steven Lewis is a visiting professor in the Charles E. Schmidt College of Medicine at Florida Atlantic University. Diagnosed in 2007 with pancreatic cancer, he miraculously made it through a second diagnosis in 2010 when it spread to his liver. Lewis published a book entitled, The Ripple Effect: How a Positive and a Caring Community Helped Save My Life. His hope is that his book will provide others facing difficult life situations the strength to choose the path to recovery.
Dr. Lewis, as a two-time pancreatic cancer survivor, your battle with cancer initially lasted several years from 2007 to 2008 the first time and then again for at least one year in 2010. Your successful battle with pancreatic cancer, twice, has been labelled a “miracle”. Can you explain the emotional roller-coaster that challenged you over these years? Did you reach out to any complementary treatments like meditation to help you get through this difficult time?
The emotional roller coaster that I experienced is a fairly typical reaction suffered by patients and their loved ones during the long course of treatments often needed to address complex cancers of various types. There are situations in which certain treatments work and others don’t, certain test results may (rightly or wrongly) suggest disease and also when there is an out-and-out reoccurrence of life-threatening cancer – as there was in my case – after it seemed that the coast was clear and I was well-on my way to recovery. All this really tests the mettle of you and your loved ones to maintain a positive attitude and keep an emotional equilibrium.
As I mention in my book, staying positive is a vital key to thinking clearly about many important health and life decisions that have to be made during a cancer journey. In contrast, lapsing into a pattern of negativity and despair would enable negative emotions to take on a life of their own, detract from quality of life and likely limit a patient’s ability to fight their disease.
I did not consciously reach out to complementary treatments such as meditation to help get through this difficult time. What I did do, however, was to use the large amount of spare time on my hands to think clearly about my health situation, my life – past, present and future – and my family. This helped me gain a great perspective from my situation and use the disease as an opportunity to grow emotionally.
What I am saying is that most people with pancreatic cancer are essentially full-time patients – unemployed in the traditional sense – and their full-time job is to get better, physically and mentally. If a patient is able to stay positive like I did, having the time to think clearly about a wide variety of life issues can be used to one’s advantage in recovering from the brutal treatment procedures – which in my case included surgery, radiation and chemotherapy – and also in beating the physical and emotional part of the disease, itself.
When you were initially diagnosed in 2007 with pancreatic cancer, what plan of attack did you and your wife put together to deal with both your medical treatment going forward and telling your family? Do you feel that time to put together a plan to move forward through your journey gave you a sense of control, emotionally and physically? Did you feel that you had some type of control as you went through diagnosis and treatment and recovery?
We definitely and deliberately constructed a plan of attack. We spent the week between my initial pancreatic cancer diagnosis and the Whipple surgery at our home in the Berkshires immersed in the beautiful natural surroundings of an impending fall season. We spent many hours in quiet discussion and interacting with close friends, developing strategic plans about how to tell family, relatives and other friends and trying out some of our plans on nearby friends and neighbors. Because the Whipple surgery – in spite of its complex procedures and long recovery – held out real hope for a cure, we decided to slant our feelings in the most positive way while of course telling the truth and not projecting false hope or the illusion of any easy road ahead.
It was also during this week between the diagnosis and Whipple surgery that our plans were hatched for using CaringBridge.org as a way to communicate with friends and relatives. All of this planning definitely provided a sense of control emotionally and physically as I moved forward.
Over the course of my cancer journey, that sense of control fully emerged. It centered around the notion that even though I could not control all of the events that swirled around me during my journey, I definitely could control – or at least deeply impact – my emotional and, in certain cases, my physical reactions to many events. I call this “the power of choice”. This is because I believe it is a conscious choice that patients can make that can help empower them through severe and life-threatening circumstances.
We know that pancreatic cancer typically has a low rate of survival due to late stage diagnosis. The Whipple procedure seems to be the gold standard of treatment for this cancer. What can you say to those who have been diagnosed with pancreatic cancer in preparing for this procedure? What team of people should you have around you to assist in a successful outcome?
A vital preparation for pancreatic cancer treatment that includes the Whipple procedure is to select a surgical team and medical center with extensive experience with the procedure. In my case, I was fortunate to be referred to a surgeon whose team performs upwards of 150 Whipple surgeries each year, i.e., about 3 of these surgeries per week. The mortality rate for Whipple surgery is very low these days but this is not the case for complications that could permanently affect your digestive system and quality of life. The posts on Facebook sites such as the Whipple Warriors group attests to a fairly high rate of pain, discomfort and a variety of long-term issues resulting from this surgery that are essentially trade-offs for its life-saving effects. In my case, my excellent and experienced surgical team and my previous life-long good health and excellent physical condition definitely contributed to a virtual lack of such complications.
Another very positive aspect of my overall cancer treatment was that all of it was administered at the same major medical center by a team of doctors that included my primary care physician, my oncologists, my surgeons, my radiologists and others such as GI specialists. Medical decisions were made after consultation with the entire medical team who moved forward united in their approach.
Such a well-coordinated medical approach minimizes the physical and psychological energy expended by cancer patients who visit specialists at multiple private practices or medical institutions who may have very different ideas about how to proceed. I realize I was very fortunate to have experienced this treatment situation and I do consider it an exemplary method of dealing with complex cancer treatments and other similar illnesses.
You have a number of caretakers in your life with your wife, your family and as you state, “a caring community”. How important was that to you? Also, how did you reciprocate in caring for your caretakers?
Obviously my wife, family and caring community played a vital role in nurturing me physically and mentally as I progressed through the most difficult hours, days, weeks, months and years of my life. Without the positive energy I derived from all those in my healing community, I doubt that I would have recovered as fully as I have and reached a point from which I can look back at my cancer journey as making a vital contribution to the well-being I now experience going forward each day of my life.
I reciprocated in caring for my wife’s unique and loving caretaking by trying to stay as positive as I could be, even under the toughest circumstances. This, in turn, helped provide my wife with the wherewithall to keep giving me her utmost care even when she was faced with other significant issues relating to our children, her elderly parents, and running her own business.
Just as my wife went the extra mile for me, so did I for her. My complaints to her, if any, were extremely limited and I tried my best to regularly bring needed humor into our daily interactions. For example. if Karen was busy with many things aside from me – as she was virtually throughout my cancer journey – and would sometimes lose her almost inexhaustible patience with me, I would snivel in a whiny voice, “Don’t be mean to a cancer patient”. That would crack both of us up and greatly reduce tension and drama during some very difficult times.
To my close friends and relatives that I interacted regularly with in person and on Caringbridge.org, I worked to project the most positive aspect of even the most difficult of situations. Because I believe that there can be a positive spin to nearly all situations in life, I feel like I was not misleading or dishonest in my actions. I firmly believe that had I instead projected an image of negativity and complaint, many people would have simply stopped being extremely supportive and/or found excuses not to interact with me. This is because of the truth that everyone has their own problems and I would have worn out the good intentions of others by regularly complaining to them about my own issues.
As a doctor in integrative medicine, do you feel your knowledge of the human body helped you to understand the challenge you had ahead of you? For those of us who are not in the medical or clinical fields, what can you say that would get our attention about preventative care?
My personal approach to understanding the human body within my own specialty of physiology, focuses on the overall big picture of how humans, per se, function, rather than understanding people simply as a collection of molecules or cells. Because my approach is to focus on health from a global whole-body perspective, I was interested during the course of my cancer experience in maximizing my quality of life, whether I had months to live or ultimately would be cured.
Consistent with this approach, I felt comfortable with my doctors doing the “heavy lifting”, i.e. deciding on my treatment regimen to deal with the basics of disease. For this reason, in spite of my own biomedical science background, I did surprisingly little if any reading about the basic cellular mechanisms and treatments for pancreatic cancer. Instead, I aggressively took on the aspects of treatment I felt more likely I’d personally have a significant impact on, i.e. my emotional and spiritual well-being and getting in touch with and regulating my own reactions to the difficult situations that regularly arose. I did not fully realize this during my cancer journey, but my choice to proceed in this manner has profoundly affected my life in an extremely positive manner.
How has cancer changed your outlook on life?
My cancer experience has dramatically affected my life. I now look forward to each day with a positivity and vigor that I never knew before. My energy – for a 66 year old person who has been through all that I have – can be astounding. I am capable of repeatedly working nearly around the clock for several days at a time. I attribute this to my cancer experience helping me sort out what is truly important and what is not important in my life. For this reason, I am capable of enormous focus on necessary issues without being distracted by trivial, time and energy wasting matters in ways that I was pre-cancer. I now consider myself to be in the prime of my life and look forward to many more productive years both personally and professionally.
Since my cancer experience, many of the smaller day-to-day life issues and disappointments that virtually all of us regularly experience simply melt away into the, “well, that’s not pancreatic cancer” category. In this way, I consider my cancer experience, as physically and emotionally perilous as it was, to have provided me with a great gift… that of perspective to see life’s more trivial issues for the small inconveniences that they really are.
You have written a book entitled, “The Ripple Effect: How a Positive Attitude and a Caring Community Helped Save My Life”. Please tell us how this ripple effect started and what you did emotionally to prepare yourself for the outcome. What is the message of your book?
The ripple effect started with my own development of the positive attitude that kept me upbeat throughout nearly all my two bouts with pancreatic cancer. It can be traced back to the Saturday night in Boston’s Beth Israel Deaconess Medical Center, while I laid on a gurney just prior to the CAT scan that would show that I very likely had a cancerous tumor in my pancreas. As I laid there in deep fear, just about to lose it, my wife took me by the shoulders, looked into my eyes and told me that we had been through so much in our 40 years together and that, whatever the outcome, we had to go through what lay ahead positively and with grace. This kept me from going over a mental cliff into an abyss of dysfunction.
Over the next few days of additional tests and receiving a formal pancreatic cancer diagnosis, I did a lot of thinking, mentally preparing myself for what lay ahead. It was during these few days, that I realized that my wife was absolutely correct. Whether or not I would receive this deadly diagnosis, whether or not a premature death awaited me, I really had no other alternative but to choose to remain positive. I knew the fight of my life was just beginning, and that I had to keep my wife, family, relatives and friends strongly at my back to nurture me and regularly provide me with the energy and courage to sustain my battle.
I instinctively realized that the positive attitude must start within me and then would radiate out to all those around me. I know I could not realistically expect my wife and others close to me to continue to provide me with encouragement if I reacted negatively around them and showed signs of despair. That might work in the short-term but not over that long haul of a protracted cancer battle.
So during the week between my diagnosis and Whipple surgery, I tested my then tentative positive attitude out in the “laboratory of human feelings”. All “pilot studies” demonstrated that this approach worked well – the more positive I acted with others , even under these dreadful circumstances, the more positive energy I received in return. And, so began the ripple effect of positive emotional energy that sent me soaring above my illness and stays within me to this day.
The overall message of the book is that virtually all of us at some time of life will experience extremely difficult circumstances such as a cancer diagnosis or other major health setback, loss of a loved one, the effects of an accident or natural disaster, divorce, or a major financial loss. Under these circumstances it is normal to experience initial shock, grief and/or other extreme acute emotional reaction.
However, beyond that period, it is important for all of us to realize that we do have the “power of choice”. Even without living in denial, we can realize that we are not victims but simply just like everyone else that experiences a very painful physical or emotional hurt. Then, realizing this, we can choose to go forth either in a positive, upbeat manner or alternatively in a state of fear, anger and/or despair. If we choose the latter, we cannot realistically expect to indefinitely maintain the support of friends and loved ones. They will eventually come to realize that the positive energy they are trying to give us is being sucked out of them and they will become exhausted from their effort. If in spite of a major setback, we chose to go forth living our lives with as much positive attitude as possible, we will instead gain the admiration of others and they will return to us more than enough positive energy to help us compensate for our difficulties.
This to me – after all that I have been through – seems one of the basic truths of life that most people don’t at all see very clearly. In this, way my book applies not only to coping with cancer, but to a wide variety of other of life’s difficulties.
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