It's my hope that two versions of the same story continue to be written because I am not ready to be the only storyteller.
In July 2014, two versions of the same story began to be written. A young woman was diagnosed with stage 4 Hodgkin’s lymphoma. She had several procedures, took far too many meds to count, had multiple radiation treatments and endured over 50 combined chemotherapies. Nearly three years on, that same young woman continues to bounce in and out of clinical settings with complications that she will live with forever.
At the age of 23, being the sister of a cancer patient wasn’t a place that I ever expected to find myself. To think about life without one of my siblings was a thought that I didn’t think had a place in reality. To now be almost 26 and still know that it could happen leaves me with a sense of uneasiness. When she was diagnosed, I knew of the word cancer, but my knowledge of the disease was vastly limited. People I knew had been affected by cancer, but it isn’t something that I’d ever considered being so much a part of my life.
Our relationship has never been that smooth, and during this time, I think we have still had our fair share of turbulent times. It is my hope that in time, we will straighten things out, but because of cancer, there are far more complexities now than there used to be. My impatience with the entire situation has only gotten worse as the time has passed. It came with the need to find any remedy to ensure that she was a survivor and not a name spoken of in memoriam. I have tried the patience of her care team during this time, too. I often have had notebook and pen in hand ready to take notes and ask questions.
As her caregiver, that has been my job: to protect her, keep her alive and to keep her going when she didn’t know how to do it for herself. I went and go to all the important meetings, sit and wait with her for blood results, share in the scan results — for good and bad – and spend time at the hospital with her so she does not have to be alone. Hard as it’s been, I’m learning that no one person can ever guarantee or be responsible for the health of another, nor should they be.
Her illness altered not only the relationship that we had, but also the dynamic within our family. When she was diagnosed, I made a choice to become her caregiver. While our siblings have often helped with logistics and to keep the homefront stable, they have rarely been physically present. As for our parents, I do not think any parents can ever imagine a child being so sick, let alone parents that had already lost a child many years ago. Yet still, especially in the beginning, they looked after her and did all that they could. And they did it all as their hearts were breaking.
The thought that she will go through what she has already endured again is devastating. For her, I am not sure that it is a thought that truly has ever permeated her mind. Doctors don’t know what the future holds. And if she is to relapse, they don’t know what options she would have. Given that is her future, it is better that she does not think about it now.
At different times during her treatments, questions that most would shy away from circled within my brain. Prior to her bone marrow transplant, those questions needed to be answered. If the worst happened, we needed to know what her wishes would be. It’s a gut-wrenching conversation to have, especially because after all she had been through, she was finally preparing to finish. This was supposed to be the thing to save her life, and here we were talking about what to do if it ended.
If cancer has taught me anything at all, it is that the old cliché saying “nothing is guaranteed” is, indeed, true. It is why last fall, I took the chance to break from all that had disrupted life for quick trip. It was during a time when I didn’t know how much more time we would have with her. I would hope that after everything, she has so much more time. Time to laugh and cry. To make many more memories. Time to do all the things we talked about her being so scared to miss in the quiet of hospital rooms when she couldn’t sleep at night. Even though we have been side-by-side, we have each gone through this journey differently. With that being said, we have always both been on the same path, always with the same end goal. She is the only one who can recall both the good and the bad. To share stories of banana split nights or root beer float days. The only other one who can talk about Sneakers as a person and not an item. Endless time in chemo chairs, 14 hour days at PSL and countless visits from the Grinch to brighten up the darkest days. So, while nobody can tell me what the future holds, or even what tomorrow might bring, it is my hope that two versions of the same story continue to be written, because I am not ready to be the only storyteller.