Most of us have spent our lives focusing on life and living life to the fullest as a result of being a part of a family in which cancers have struck. Most of us have been raised to appreciate life, no matter what it brings.
For many of us who have lived with a “family cancer thing” and have seen loved ones die of Lynch cancers, a diagnosis of Lynch syndrome is a blessing and brings with it a sense of finality from years of ongoing concerns and fears of the unknown. Most human beings have a tendency to fear that which is not known to us and to gravitate toward that which is familiar. The family fear is now defined with a name and is no longer an unknown anomaly, allowing us to take control and own our syndrome. We can be tested annually and, more often that not, Lynch cancers are highly treatable when discovered at an early stage, thus giving us the gift of enhanced longevity. As it has emerged from the shadows, we become aware of what we are battling. We become empowered in being able to protect our families and ourselves.
We learn we are not the only ones in the world with this syndrome and begin to realize Lynch syndrome is far more common than we thought. In the United States, alone, over 1,000,000 individuals are projected to have the mutated gene causing the predisposition to cancers. To put this into perspective, that is the size of the population of Boston, Massachusetts. Amazing, huh?
Even more amazing is it is projected that less than five percent of that 1,000,000 persons have been diagnosed, to date. It is estimated one in every 400 people have Lynch syndrome.
Very few of us, thus far, have been the only ones who have been blessed with genetic testing. The rest are unaware and vulnerable to cancers. Perhaps that is why it is considered a rare disease?
In fact, having genetic mutations are extremely common. Almost everyone has some form of genetic mutation–ours just happens to be being predisposed to cancers and fortunately, with today’s technology and knowledge about how environmental and lifestyle factors interplay with cancer, we can protect ourselves.
Therefore, due to the above, we often don’t take the time to engage in the delayed stages of grief. Some of us have surgeries and treatments we need to undergo and busy ourselves making the necessary preparations and planning to keep our household running during our time of recovery.
Others, without the cancers, have priorities to reestablish, the need to develop a good medical team and readjust dreams, begin the process of annual surveillance testing, figure out the best way to prepare the children and how to live life, with this new and different perspective.
So, initially, we do grieve. Its good for us to release the emotion. Then, we stand up and we prepare. We prepare for life and move forward upon a course of action. We prepare for surgery or treatment. We prepare our bedrooms for comfortable and positive recovery.We prepare our home so there are no urgent maintenance issues during the time of recovery and treatment. We plan how our homes will operate while we are navigating through the process and we take care of business and make certain our legal matters are resolved and our final directives are made, not solely due to fear but of caution and because it is a good business practice and the most loving thing we can do for our families and those who care for us.
“This year for the first time, there was a drop in the reported number of actual cancer deaths in the U.S…Although we are winning the “war on cancer,” there is a remarkable opportunity to save hundreds of thousands of lives and to reduce suffering from this disease with lifestyle changes and an increased use of proven screening strategies.”
-Dr. Carolyn Runowicz
We learn more about our syndrome and we make lifestyle changes, realizing environment and lifestyle interplay with our predisposition toward inherited cancers. We may choose to exercise more, work with guided imagery and positive affirmations, make adjustments to our diet and become aware of environmental factors which can exacerbate our risk. Every positive choice we make enhances our quality of life and our chances for survival.
We sit down with our family members and alert them to the risk. If we have cancer, we prepare for the difficult road ahead. A transformation occurs instead of withering within a cocoon, we stretch our arms and we embrace life.
“Gratitude bestows reverence, allowing us to encounter everyday epiphanies, those transcendent moments of awe that change forever how we experience life and the world.”
-John Milton
So, we go through surgeries and treatments, which come too soon for our hearts and our emotions and sometimes too late for some of us, having been easier if there had been an earlier diagnosis. But we do it, because, again, we only have two choices once we have contracted the cancer.
We drag ourselves to the Infusion Clinics and make ourselves walk through that door, playing the odds, fully realizing the effort required will likely pay off with more moments of wonder and beautiful days. We are acutely aware of every breath we take and the colors and the smells of the earth around us. We experience an awakening.
Each day, following the completion of treatment, comes a renewed feeling of strength and a time of immense appreciation as well as a gratitude for life. After diagnosis, many survivors focus on ways to make their lives count and on public awareness so more families can be protected and more lives saved. Many engage in clinical trials and studies or enroll in registries so research can learn more about Lynch syndrome and the generations to follow may obtain a cure. Almost all make substantial lifestyle changes and undergo a change in priorities.
Just remember…there is substantial hope, technology and treatment today that we can live a far better quality of life than those who came before us. One thing is for certain. With the knowledge of how fragile, wonderful and beautiful life is, each of the days, months and years to come, will be special and filled with a magical wonder for those of us with Lynch syndrome.
