Our Story: A Caretaker's Perspective

The big “C” was a disease that we never thought we would be faced with at the age of 38. But we came up close and personal with cancer in 2004/2005 and again in 2014/2015. My husband, Thayer, was diagnosed with Hodgkin lymphoma in 2004 and was in remission until 2014 when he had a relapse. It was to an arduous journey for our family during these years but the journey continues as the disease is very much part of our lives. In support of this blood cancer community, I will begin to share our experiences and my perspective as a caretaker.

It was the summer of 2004 when my husband, Thayer, mentioned he had a bump on his neck. While he may have been tracking its growth throughout the summer and fall, we did not speak again about this bump and I did not give it much thought until October 31, 2004. Perhaps, we feared the worst and it would be the big “C” or our busy schedules distracted us. I am not sure.

Everything changed on Halloween

On Halloween 2004, while at a neighborhood gathering, a friend mentioned that her husband had just had a lump removed from his neck and, fortunately, his tumor was benign. After this conversation, I could not focus on candy, trick-or-treaters, or anything Halloween. I could not wait until the next day when the doctor’s office opened to make an appointment. That appointment was the start of a frightful period in our lives, full of anticipation, questions, and fear.

After the initial appointment, it was several weeks of tests and waiting until Thayer brought home the potential diagnosis -- it plainly read “highly suspicious of lymphoma”. As I remember the conversation on Halloween, I clearly remember that I was helping our son, Blake, with homework on the floor of his room when I read the radiologist’s diagnosis. I looked at my husband but could not speak and held in the tears, for Blake’s sake. We both knew it was bad news but little else.

What does this mean for our family?

What is lymphoma? What does this mean for Thayer? For our family? What is the prognosis and treatment protocol? How do we begin researching to get the best medical care? How do we tell our young children (8, 5, and 2 at the time) without frightening them? What should we say? We had no answers.

For the next several weeks, I was challenged with accepting the reality of cancer and balancing a normal routine for our children and alleviating their anxiety amidst helping Thayer research and seek medical care. A biopsy and consultation with Dr. Straus at Memorial Sloan Kettering confirmed that Thayer had Stage IIA Hodgkin lymphoma.

Our priority was our children. So, the first questions that had to be answered were how and when to tell them that Dad has cancer. We decided to consult with a child psychologist through my employer. He recommended that we should be honest with them and tell them when we are firm with Thayer’s diagnosis and prognosis. We did just that. Before Thayer began treatment at Memorial Sloan Kettering in February 2005, we had informed them that Dad has Hodgkin lymphoma and did not use the big “C” word, as we had been advised. We only recently learned that, at the time, they did not connect the disease to cancer.  Our journey had just begun.

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