This time of year for me is always a wonderful time with family and friends, and every day, I am reminded of how amazing it is that our life has turned out the way that it has.
By: Alyssa Burkus Rolf
This time of year for me is always a wonderful time with family and friends, and every day, I am reminded of how amazing it is that our life has turned out the way that it has. Ten years ago, I was anticipating the likelihood of starting chemotherapy and wondering whether treatments would continue to be available to me as the years with this illness progressed. The trouble with life is that there’s never a crystal ball to let you know what lies ahead, or know how certain choices or decisions will pan out.
I’ve had advice from time to time on how to manage the highs and lows of life as a cancer patient. We are often reminded “seize the day” and remember how precious life can be. Others have cautioned against being too excited during the “highs” because it makes the lows that much more difficult to bear. So, how do you live your life like you truly believe that a cure will be found, yet brace yourself for the possibility of another relapse being around the corner? How do you walk that fine line?
One of the biggest decisions we struggled with as a couple was whether or not to have children. There were so many thoughts that ran through our minds. Would chemo prevent us from starting a family? Was it crazy to consider having children, without knowing what our future would bring? Could the lymphoma in my body stay stable long enough for us to go through a pregnancy? We told so many people that we believed this cancer would not end my life, and a cure would be found in my lifetime. If we truly believed this, we needed to live every aspect of our life with the same vigor and commitment. We needed to turn our hope into the realities found within everyday life.
We decided that we would always regret not trying to start a family, and we hoped that my illness would not prevent us from becoming parents. Fortunately, we have been blessed twice and are the proud parents of two young boys.
I often hear people comment on how positive we are, and wondering how we can manage to be this way. It is our new reality – we cannot let the tough stuff get us down. I will never go as far as to say it’s a “gift”, or even a “gift wrapped in barbed wire”, because a gift to me always implies that someone has given it to me or wanted me to have it. This life with cancer is not optional and can’t be changed. The only choice we do have is in how we deal with it. Our choice is to stay focused on believing without question that a cure will be found.
This doesn’t mean we live a life of sunshine and roses. Each day has reminders of the reality of our situation, yet we look for ways to ensure that the realities are woven with threads of hope. It is only in the last year that I have allowed myself to think about life beyond my diagnosis. Up until now, I really didn’t know if I would live longer than the ten year average that the statistics used to show for follicular lymphoma. More and more, references to fNHL indicate that this disease is being viewed by the medical field as a chronic illness, not a life-ending one. Medical updates from the recent ASH conference in San Diego indicate that new promising treatments are underway in trials, and a pipeline of new options continue to be pursued.
Our choice has been to live life focused on our hopes and dreams, not statistics or scary possibilities. We walk that fine line between hope and reality, doing our best to stay on hope side of it. The struggles of dealing with this disease may cause us to falter, but we do our best to look for reminders of hope in our everyday lives. Sometimes it’s a vision of dancing together at the wedding of one of our boys, or travelling together in our retirement years; other times it’s as simple as realizing that we have the ability to choose hope over fear. Seeing our boys playing together as we approach the holidays is the best reminder that choosing a life filled with hope is the best way to live. And given a choice, I’ll choose to be hopeful, every time.