Grateful for My Sister’s Life, Especially During a Cancer Recurrence

May 1, 2024
Kim Johnson
Kim Johnson

Kim was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. She turned her experience into change and has since become an activist in finding a cure for cancer. Kim has worked in politics and assisted in the passing of numerous legislative pieces impacting patients with cancer and their families. She is an activist in the field of oncology, nursing and beyond. Additionally, she is a volunteer and champion for a cure with the Leukemia and Lymphoma Society's Light the Night Campaign. Kim has shared her experiences with cancer as a contributor with Cure and through public speaking engagements throughout the United States.

Through so many cancer scares, I'm trying to live in gratitude that my sister's time is not now.

Although I am no longer my sister’s primary caregiver and cancer is not my everyday life anymore, the reality that she is dying from the disease is something that is never far from thought. This past week, my sister was hospitalized for a serious infection that resulted in a near-fatal event playing out. It caused a lot of reflection to occur regarding the past decade that cancer has been so pervasive in our lives.

Despite treatments that eventually led to an autologous bone marrow transplant and a remission lasting a little under five years, her Hodgkin lymphoma returned in May of 2021. And in all honestly, even during her period of remission, cancer was not a distant thought given all of the complications that she endured and the numerous cancer scares that we went through during that time.

It was such a long and difficult road for her to even be eligible for a bone marrow transplant that the entire process felt surreal. Once she was enduring that process, it still seemed like an impossible reality that she could survive and gain remission. Yet, against all odds, she did.

The thing is, to get her to a place where remission was attainable took ravaging her body with therapies that caused long-term complications and side effects. They caused infections and secondary illnesses that meant that, although she no longer had any active cancer in her body, the cancer still seemed to dictate a lot of our daily lives. We are approaching three years since she was re-diagnosed, and cancer is still an ever-present reality of life.

In late March, she was hospitalized with a recurrent, acute infection. It was determined after almost two weeks that she would begin hospice and we began to say goodbye. A dear friend flew in from New York to say a final goodbye, as well. And just as preparations were being made to transfer her to a hospice facility, a miraculous thing happened: she began to recover.

Throughout the past ten years, my sister has faced death on numerous occasions, but this is by far the closest she has ever come to dying. I have a tremendous number of emotions surrounding what played out, and while grateful that her time is not now, it is most difficult knowing that her time is nearing.

Although my sister has surpassed all timelines for how long she may live with cancer and beat death time and time again, the bleak reality is that she does in fact, have a terminal illness that will take her life at an earlier-than-natural time. It is difficult to put into words the optimism that occurs when a loved one surpasses expectations and beats the odds noted by statistics and providers. In a way, watching my sister be the exception to so much has painted a false reality that she is somehow not going to die from cancer. As an oncology nurse, I know that is not true and that she will, at some point, succumb to either the disease or a comorbidity of a secondary complication. For now, I am trying to live in gratitude that her time has not come yet.

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