A woman explains how she grapples with the acceptance that her sister may never enter remission from cancer.
While my sister battled stage 4 Hodgkin lymphoma, that was not the original diagnosis. When they had told us that she had cancer, they thought that it was non-Hodgkin. Late-stage cancer does not have the cure rates that Hodgkin lymphoma does, and a nurse told us that we should prepare to bury my sister. It was poor practice by that nurse, but that is a conversation for another time.
A day later, pathology gave us a different diagnosis. It was hard to breathe a sigh of relief because it was all so confusing. Having had one thought about what was wrong, it felt hard to believe what we were told. We did eventually do all the consults, and the expectation was far better than we had thought. Unfortunately, even that projection proved to be wrong. Because while my sister did gain remission, it was far removed from the journey her care team had expected.
She experienced every issue that a patient with cancer could have along the way. All the while, it meant changing and adapting to what was happening. I remember having challenging conversations with her team about when goals changed. Because when diagnosed, the plan was remission, but remission did not seem attainable for her at specific points.
The idea of palliative and hospice care was floated more than once. Talking about your sister, who is just four years older than you, dying before 30 is a conversation that one cannot fathom unless they have done it themselves.
Transitioning from thinking that she would be cured and walk away seemed to fade around month six, though it was something that lingered. No matter what progress was made with her treatment, cancer always seemed to be several steps ahead of modern medicine. It was daunting to keep pushing forward with the immense doubt that it would end the way we wanted it to.
Looking back, it is far easier to see that we made the right decision because she did gain remission. But when you are going through the heart of the storm, you doubt every choice you make. You hold your breath, hoping that the treatments you are giving are doing better than harm. And when they cause damage, you begin the cycle over again.
As I stood beside my sister through her cancer battle, we met many others walking their own journeys. And while we watched their stories unfold, I often wondered what happens when what you are fighting for does not occur? I pondered this with my sister, and while the first time we did not have to face that reality, we are facing it now.
My sister was re-diagnosed with stage 4 Hodgkin lymphoma in May of 2021. And unlike before, she does not have many treatment options available.
Cancer is something that ravages those it affects. It is a beast that is sometimes managed, and other times, is untamable. For those that are left behind, cancer never goes away. It is beyond challenging to be enduring this same path all over again. Because although we have walked it before, it still feels like there is no roadmap.
Human nature is to be optimistic. Those who work in oncology have to balance that optimism with the reality that not everyone will gain remission. Sometimes cancer will never be over, and instead, life will end. Knowing that is the eventual outcome for my sister and our family, the best that can be done somedays to breathe and keep moving forward, even when we don't know where forward leads.
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