In truth, I have been remarkably lucky. Though the chemotherapy I underwent 10 years ago was wrought with many of the typical side effects, none have endured. Bilateral mastectomies and reconstruction were certainly not easy, especially in a post-chemo body, but that is long over and I’ve had no lasting complications, save the risk of lymphedema. I was spared radiation (saved for another day), and five years of tamoxifen was far easier on me than many other women I know. I certainly hoped that cancer was in my past, but that was not my fate. Treatment for metastatic disease has brought on the discomfort of hot flashes and night sweats, and I fear the day when they can’t access a vein in my arm and worry about future drug resistance. Each tumor marker and scan brings on anxiety over the possibility of further spread (but also the promise of NED). But all in all, I have no pain and my treatments do not limit my activities in any way. In fact, to look at me you would never guess I’m sick at all.
I know how blessed I am, and I count my blessings each and every day. But no cancer journey is ever easy, and mine is no exception. The greatest challenge I have faced began the evening I was diagnosed, the shock still fresh. There was not, however, much time to absorb it all because I had to mobilize immediately. Having skipped the PTA meeting that night, I knew that I would be the buzz by the next day. So before taking him to school the next morning, I would have to explain to my three-year-old son what was about to happen. There were remarkably few resources available, which I discovered sitting on the floor of the children’s section at Barnes & Noble, my husband, the department manager and I all in tears. The few books we found focused on helping children cope with a relative who has cancer, but invariably that relative was a grandparent…never a mother. It was inconceivable.
Finding one page in one book that would open the door to the conversation we needed to have was like finding a needle in a haystack. We met with success upon finding one page in one book — the analogy of weeds in a garden was our starting point, to be removed by pulling them out at the roots or poisoning them, chemo and surgery by (please God) wise doctors who would help me heal. That worked when he was three.
It is hard to believe that it was nearly 10 years ago, and that my little boy is now a teenager. I always choose to focus on silver linings, but finding the silver lining of being three years old with a mom who has cancer was a stretch, even for me. When I look at the remarkable child I have, however, I can now see it so clearly. He is sensitive, compassionate, and has a depth of understanding that is quite unusual for a boy his age. He does not hesitate to reach out to others who are facing similar challenges, and remarkably, he seems to find just the right words, even with me. I am in awe of him, and while I wish his path on no child, I am profoundly grateful that it has shaped him into someone I truly admire.
My three-year-old son always had challenging questions that I struggled to answer in clear, age-appropriate and honest ways. My 13-year-old son…oh my. I have very few answers for the more sophisticated questions that he now presents. Like most of us, I muddle through. What i have developed, however, is a foundation of how we, as a family, approach cancer…and life.
Honesty – At the age of 13, he doesn’t need to know everything. But he must know that he can trust me. I answer every question directly and honestly, even when I know the answers will cause him pain or fear. At the same time, I am careful to answer only what is asked, aware that staring cancer in the face can sometimes be too much for anyone.
Mystery – Together he and I have done quite a bit of research on medical topics, and reliable Internet resources typically provide all the explanation he needs. But when not, I have assured him that he will always have access to my doctors, and have taken him along to appointments, even treatment, in hopes of minimizing the fear of the unknown. He is free to ask whatever is on his mind.
God – “Why” is, perhaps, the most painful of questions…completely unanswerable. Why is there cancer? Why us? Why again? What kind of God…. There is no “why” and yet that is quite unsatisfying an answer. In many ways the best I can do assure him He is free to question, doubt, and express his anger. He knows, too, that I still believe in God, and my belief that God can take whatever my son (and the rest of us) has to dish out.
Uncertainty – His mind runs through the “what ifs” as much as mine does. I do all that I can to preempt his fears by being the one to raise them. When children don’t know something they tend to fill in the blanks without even realizing it. In the first weeks after my metastatic diagnosis he filled in some blanks by assuming that I could die at any moment, or simply not wake up one morning. It was heartbreaking to discover that he went to bed each night not knowing if he would have his mother come morning. And I am so very grateful we figured that out and adjusted his expectations.
Family – No matter how rocky this road gets, no matter what we face, we face it together. Moreover, he is a crucial member of the team. I spend a great deal of time focused on communication, and I think I drive everyone crazy with my insistence on talking. I’m okay with that. We talk about our fears, our decisions, our hopes, our plans and our prayers.
Future – He recently joined a teen group at a local support center. One of the things they do is occasional cooking classes with a local chef/actor. I mentioned it to him and his immediate response was “that’s so I can take care of myself when you die.” I was stunned, but he was right. While I regularly remind him that we don’t know any of our futures, I am also open about what our plans are for him, and he knows he will ALWAYS be taken care of, whether by his father, his grandparents, his aunts and uncles. We will all keep him safe and loved.
Laughter – One of the few true blessings that cancer has brought us is the ever-present awareness that our time is limited. We live that every day, focusing as much as possible on the gift of today, embracing it with laughter, wonder no joy.
Love – We all know there are no guarantees, but I regularly assure him of my belief that love endures forever…across time and space, through life and death…and that no matter what happens to me, he will be loved by me forever and ever. Much to his chagrin, he doesn’t ever go very long without being reminded that I love him. But those are the memories that endure…
Every family, every child, every person is different, and we each manage “crisis” in our own ways. Moreover, our instinct is to protect our children, and understandably so. But like us, they benefit from open communication and a chance to share their own questions and concerns. Giving them voice is often the best vehicle for calming them…and not brings a family closer than open, honest communication.