Allowing Myself to Lean into a False Reality: The Comfort of Hope

A Clinical Remission, but Not Certainty

My sister’s declining health and initial diagnosis of cancer in 2014 was a life-altering event. Learning that she was terminal, becoming her caregiver, deciding to become a nurse, accompanying her for a 100+ day hospital stay for an autologous transplant, and finally, a clinical remission. So much more happened between those events, but it's too much to list. Notably, what did not happen at that time is that my sister did not die from cancer. Despite a terminal diagnosis and multiple acute scenarios where she was seemingly on the precipice of death, she survived to gain a clinical remission.

That last part, clinical remission, is important. Because of how aggressive the Hodgkin Lymphoma was, although she no longer had signs of the disease, there was a high likelihood that it would return. My sister had to be extremely closely monitored after she received her transplant. Daily follow-ups at the clinic slowly tapered to monthly visits with her transplant team.

Every appointment brought about anxiety for both my sister and me. We never knew if that appointment would be the one where we would be told that her cancer had returned. As her caregiver through cancer and in the 2.5 years post-transplant, I knew the importance of follow-up care. No matter how much anxiety was provoked by her appointments, if the cancer did return, early detection and treatment intervention would be imperative.

The Difficult Decision to Step Away

I discontinued being a caregiver to my sister due to a myriad of circumstances, including but not limited to my sister’s violent outbursts, my health, her non-compliance with me or most medical advice, and underlying familial complexities. Doing so was far from an easy choice. I knew while going through the transfer-of-care process that her providers had their own concerns. Although part of me knows that it was what needed to happen, it was incredibly difficult for me to do. And in full transparency, it is a decision I have continued to feel guilty about nearly 6 years later.

Upon stepping away as my sister’s caregiver, her care team’s concerns and my fears were realized early on when she discontinued post-transplant follow-up care. She remained on necessary immunosuppressive medications, but she did not regularly receive vital labs and imaging to track her clinical remission. As time passed and we approached the heavily discussed 5-year mark post-transplant, at which time she would be considered in full remission, my hopes grew. While not her caregiver anymore, I still did care about my sister.

Learning to Imagine a Life Without Cancer

Initially after transplant, my mind was filled with worries that cancer would return sooner rather than later. I feared that she would have to endure more treatments and side effects. I ruminated on what a treatment plan would look like, given that she had exhausted so many pharmaceuticals even to make it to transplant.

As days turned to months and then years, most of my concerns grew quieter. Sometimes those thoughts would happen, but a part of me combatted those notions by beginning to believe that maybe she would not relapse. After all, my sister had defied all the odds up to that point, so she may also defy this odd.

The time between diagnosis and clinical remission was traumatic. The more time passed and the further away she got from gaining a full remission, the more my optimism seemed to grow. The more I allowed myself to lean into a reality in which my sister would remain cancer-free.

The Phone Call That Changed Everything

That all changed with a phone call in May of 2021 that shattered those hopes and snapped me back to the reality of the cruelty that is cancer. It was the day before my college graduation, and my dad had called. He told me that she had been sick in January and they had moved her 5-year PET scan to May. It revealed that my sister’s cancer had returned, and she was being re-diagnosed with Stage 4 Hodgkin Lymphoma.

It was the same cancer as before, the same subtype and variant, but it was even more aggressive than when she was originally diagnosed. It felt unbelievable to hear. Given how extensive and aggressive her cancer was the first time, I was not sure how much worse it could be and having allowed myself to indulge in a fantasy of cancer not even returning, hearing that it had come back felt like a gut punch.

Understanding the Fear Behind Follow-Up Care

To be clear, I do not blame my sister for her cancer returning. I feel the need to clarify because of how some of what I have shared has been responded to in the past. I so badly wish that after I stopped being her caregiver, my sister had continued to be seen. It could have meant an earlier diagnosis the second time around. Ultimately, knowing her prognosis with her original diagnosis, the outcome would likely have been the same. I know that just as I had begun to think about a future that did not involve cancer, my sister did too. The gut punch that I felt when I heard the news surely pales in comparison to how she must have felt that day.

It may seem obvious that, being as sick as my sister was, she would have been diligent with her follow-up care. The reality is that even before her original diagnosis, my sister had been petrified at the changes that were happening in her body. She knew long before any of us that she was sick; she just had not known how sick she really was.

The initial treatments were brutal for her, and she was left with a vast array of everlasting complications. I truly do not know if she knew the cancer had returned before we found out. If, like the first time, she ignored signs and symptoms out of fear. I also believe that there may have been a chance that she could not discern between treatment complications and the cancer returning.

Holding On to Hope Between Diagnoses

I have never pretended to know how she felt throughout any part of her cancer. Even if it may have led to a delayed diagnosis, I want to believe that between cancer battles, my sister was able to find optimism. That she spent time daydreaming that she would have the chance to grow old and travel as much as she wanted. That she did have days where she, too, believed a life without cancer was possible.

And it is my greatest hope that she was able to experience hope between her cancer diagnoses.

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