The fight continues after remission. You simply begin to fight for more good days than bad instead of fighting for your life.
During my sister’s cancer journey, we have faced “the end” on more than one occasion. I spoke with countless professionals about how to face life without my sister and how best to help her cope with that prospect. After all, she is a 29-year-old with far more life ahead of her than behind her. We have been lucky to have palliative and hospice as a part of her care team. Sadly, many studies show that these services are underused and patients are not presented with them as options.
When we had our last conversation on this topic late last fall, nobody would have thought that she would gain remission or even be a candidate for an autologous stem cell transplant. I remember sitting in her oncologist’s office and discussing what the future would look like for her care. In reality though, the only thought running through my head was how unfair life was. How could somebody have gone through so much, simply to die anyway?
She has suffered so much from the treatments that were supposed to be saving her. With every chemo treatment, she suffered adverse effects. Every drug that we dosed to help her caused more complications than her team seemed equipped to handle. After each treatment failed, I made a point to sit down with her and discuss what she wanted to do. Because after her second-line treatment failed, it was made fairly clear that everything after was simply a last-ditch effort that may or may not work. All along, my fears were that she was suffering now only to lose the battle later.
After many long days and much discussion, she chose to forgo a maintenance drug to help her body stay in remission. With a relapse rate greater than most, she has chosen to live. For the first time since diagnosis in July 2014, she is finally living. Not living in the bubble of cancer, not in fight mode, but living as a 29-year-old survivor.
Talking about stopping treatments during this journey has been heartbreaking. Not only did it mean that I was losing a sister, but it also meant that she has suffered for nothing. She has always been special, even from the beginning. Her oncologist referred to her as “the anomaly” one time, and it stuck. Our friends say that she is the walking definition of Murphy’s Law and her nurses say that she is the exception to all the data.
The biggest reason of all is that against all odds, she is still here. She is that one patient that doctors hold on to. She is that patient that, for good or bad, is in the 1 percent. She is the asterisk of every case study, and she is hope that those afflicted with the disease hold on to.
Because those sentiments, I feel that she doesn’t quite understand the limitations of modern medicine. It is a bitter pill to swallow that someday there may not be a “next” for her. To me, it is harder to know that she may never understand.
At times, the treatments that were presented to her seemed like torture. It was as if she was going through because nobody could let go, including all the doctors that had invested so much, the nurses that had been by our side throughout everything, our friends who’ve never been able to grasp how a once-healthy person that they knew became the sickly person that was, my family, who so often hears what is happening but doesn’t witness it, and me, who has been through all that she has without actually being afflicted by the disease.
Abandoning treatment in favor of time at home is not surrendering. I do not know if time makes a difference, but I do feel that my sister has a different perspective because she is so young. She is fighting for all that somebody at 90 would have already had.
No matter how tough or bleak the road ahead looked, nobody used the word ”'incurable.” Nobody said that she was terminal, even during the times when she was out of options. Because no matter how bad it got, everybody was hoping for the cure that had been promised upon diagnosis. Everybody that cared so deeply and wanted a happy ending to her story.
At times, I have looked at her, so thin and frail, and wondered if it was all worth it. I wondered if all that she has been through and endured was a means to an end that she simply did not want as time wore on, and what she had gone through was all because we were selfish and would never be ready to let go.
Nearly two years later, she is remission. Nonetheless, I sit next to her tonight in a hospital room, the place that she has sworn she does not want to spend her time. She is tethered to the machines that beep and screech at her, haunting her, as she rocks in pain and tries to rest in the least restful place of all. She is suffering the aftereffects of all that we did to her in order to gain that ever-desired remission.
Every day is a battle through chronic pain, endless nausea and neuropathy that causes frequent falls and immobility. Once again, cancer has injected itself into our lives when it was not, is not and never will be wanted. As time passes, I worry about the side effects that we have yet to discover.
Something that I came to realize after many nurses told me is that you are not giving up by not doing treatment. You are still fighting, regardless of what is decided. You are simply fighting for more good days then bad. You are fighting for memories that you would not have the chance to make if spent in a hospital. It is a valiant fight and it is not one that you lose because you weren’t strong enough. It is one that some lose because cancer sucks.
As I sit in the quiet of her hospital room, I am once again left to ponder the conversations of quality over quantity that were once had with her care team. I am left wondering what the long-term effects of these treatments will mean for the future that she has painted in her mind. What does it meant for the 29-year-old who simply wants to live a normal life and not that of a cancer patient?