Five years ago this past May, my dear friend Eric lost his courageous battle with a glioblastoma, an aggressive brain tumor. This event marked the end of one life and the birth of a new one.
May 1, 2009 was the day that I decided to create a nutrition service for cancer patients, offering them solutions to the major impediments to proper nutrition that made it so difficult for Eric and his family to ensure that he was well nourished and strong.
Of course, no journey is ever a straight line and this one is no different. It took nine months before I left my successful career with the goal of launching a new one as an entrepreneur. And, as fate would have it, two weeks after I left my job in April of 2010, my father was diagnosed with terminal multiple myeloma, an aggressive bone marrow cancer, and a prognosis of six months to live. So I took a bit of a detour to help him and my family navigate his treatment. But this part of the story has a happier ending -- eight months after he was given six months to live, my father was strong enough to undergo an autologous bone marrow transplant, a risky procedure due to his age and frail condition. The transplant succeeded and by his birthday in April of 2011 he was well on his way to recovery and cancer free.
Two months later I incorporated Meals to Heal.
While quite different, the cancer journeys of Eric and my father were tremendous training and learning for starting a cancer nutrition business. With Eric, I learned of the significant impediments to patients receiving proper nutrition – side effects such as lack of energy, mouth sores, changes in taste, difficulty swallowing and, lastly, the overwhelming fatigue associated with treatment and disease. These side effects are often so severe that patients are unable to eat at all and end up hospitalized, malnourished, or both.
In an effort to find resources and tips for ensuring that Eric was well nourished, his family was frustrated and overwhelmed by the voluminous amount of information (and misinformation) available on the internet. “Facts” contradicted other “facts” and it was unclear as what was legitimate science or hearsay, anecdote and even unsafe. Like all cancer caregivers, they feared making the wrong decision and following advice and tips that were ineffective or unsafe.
The fear was paralyzing. Decision-making was difficult and fraught with stress.
Lastly, Eric was never referred to a dietitian despite his significant nutritional issues and impediments to eating such as mouth sores and difficulty swallowing. I learned that 80% of cancer patients never see a dietitian even once despite the fact that research shows that outcomes improve if they do. To the contrary, Eric was not only not referred to a dietitian but he was also told to eat whatever he wanted which was advice contrary to what I had learned through my research. In fact, while no research has proven it to cure cancer, research has shown that proper nutrition does improve both clinical and quality of life outcomes in cancer patients.
I designed the Meals to Heal service offering to address the aforementioned three major impediments. We provide individually tailored meal recommendations and plans based on the side effects that patients are experiencing and can adjust the meal recommendations as these side effects change. We curate evidence-based information and resources so that patients and caregivers have access to information that has been vetted and which adheres to the important evidence-based standard. And, we provide telephonic nutritional counseling through a team of oncology-credentialed registered dietitians having at least 2000 clinical hours of experience with oncology patients.
As a 35-plus year vegetarian, I initially was determined that Meals to Heal offer only vegetarian options eschewing all meat, pork and poultry. What my father’s cancer journey taught me was that it is important to meet people where they are and not force major changes on them. A cancer diagnosis throws one’s entire world out of whack. The lack of control and helplessness is frightening. The only thing one can control is what they eat. Mealtime and food were the only things that remained from his “life before cancer” world.
Despite my efforts to convert him to an all plant based diet, my father wanted to eat his meat and potatoes. While not saying it outloud, I got the distinct sense that he wouldn’t eat much if he was forced to eat an all plant diet. So, while well intentioned, my efforts to ensure he was well nourished through a vegetarian diet would backfire and he would end up malnourished by virtue of the fact that he did not eat enough.
The lesson learned was that patients won’t eat what they don’t want to eat or don’t like so it is important to offer a wide variety of foods that will appeal to the majority of patients and which they will eat. In addition to ensuring that they, in fact, eat, this also gives them back control over the only thing that is really in their control in a world that has spun out of balance around them. So choice is an essential element for success.
It has been three and a half years since Meals to Heal incorporated in July of 2011 and I continue to learn from our patients and their caregivers. Like Eric and my father, they are teaching me every single day. We continue to “tweak” our services in response to the thoughtful and generous feedback that they share. I am humbled on a daily basis by the strength and courage that these fighters and their families exhibit as well as their positive mental attitudes. I am also in awe of those in the medical community who work with these patients and their families – the oncologists, nurses, nurse navigators, social workers, dietitians and so many others. They bring such dedication and passion to people whose worlds have been thrown into disarray.
In the case of Meals to Heal, our team of dedicated oncology dietitians and nurses bring such compassion and kindness to their work. They, too teach me every day. My personal journey began with the loss of my dear friend, a life changing event, and has taken me along a path that has taught me invaluable lessons about life, living and death. I continue to learn and grow every day and I have Eric, my father and the over 12 million cancer survivors and their families to thank. I hope that, alongside Meals to Heal, I can make their lives easier and less stressful.
Thank you, Susan for sharing your journey!