When you hear the words: "It's cancer."
In 1999, my son Nick was diagnosed with epithelioid hemangioendothelioma, a very rare bone cancer in his spine. Although he is now 28 years old, healthy, married and expecting his first child, you never forget hearing the words, “It’s cancer.”
In 1999, my son Nick was diagnosed with epithelioid hemangioendothelioma, a very rare bone cancer in his spine. Although he is now 28 years old, healthy, married and expecting his first child, you never forget hearing the words, "It's cancer."
What is it like? It's like standing in the middle of a train track while a powerful locomotive barrels in your direction, but you are frozen and can't get out of the way. You can barely repeat the diagnosis as the doctor schedules appointments for tests you've never heard of. There are so many questions but no immediate answers.
But if you are in this situation, know that you are not alone. While most people prefer to be self-sufficient, the learning curve and the pace of this journey is simply too steep to not accept help. As a patient navigator and a mother who has been there, here are a few pieces of advice:
Take life one day at a time. Do what has to be done today. Tomorrow's obligations and demands will get their turn. Now is the time to take a pass on events you didn't want to do anyway. Recognize which activities will make you feel supported or provide welcome distraction.
Realize that cancer can be a part-time job. Find a way to stay organized. A notebook with pockets can help store important papers. The American Cancer Society provides a free Personal Health Manager kit to keep track of treatments, appointments, questions, test results, and insurance issues. Cancer.Net and Pocket Cancer Care Guide are free apps that monitor symptoms, review medical terminology, record doctor's explanations, and provide tips to manage side effects or find a clinical trial.
Prioritize. Despite the diagnosis, life goes on: there are bills to be paid and kids to be fed. Talk with your caregivers about your most pressing practical concerns. It may as simple as changing an appointment time to preserve another important priority.
Expect stress. I often tell couples that in a sense, they both have cancer. New demands on time, financial impacts due to loss of work or medical bills, disrupted household roles, and fears about the future lurk below the surface. Connecting with your partner may be difficult as they try to absorb the difficult news. Trust that equilibrium will return.
Be open to accepting aid. There will be people who surface with the special gift of presence and empathy, are good listeners, and are happy to sit with you. Reach out to your patient navigator, connect with your spiritual resources, and think about talking with a support group.
As Nick found when he had to face that racing train, there are people ready to help. This moment of stressful time will become a chapter in the book of your life, not the whole book. The path you are on, though new to you, is well worn. You are not alone.
Cathleen Petrucci is a nurse navigator at Crozer-Chester Medical Center, part of the Crozer-Keystone Health System.
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