The Stormy Uncertainty of Cancer

If I were to compare my sister’s cancer journey to anything, I think a storm would be apt, with a hospital stay being the heart of a hurricane. It is like a slow buildup of pressure and thunder before an admission, which most likely happens late on a Saturday night. The rain begins to pour. After a long week of just making it through, she usually ended up in the emergency department at The Medical Center of Aurora (TMCA), despite my best efforts.

The most difficult times were when things seemed so out of control at home and I could no longer manage her seemingly endless list of symptoms. This is what made a hospital visit cross my mind. It was never an easy decision to make, but it had to be considered.

It was hard because having her in the hospital was always the last thing that anybody — especially her – wanted. She would be admittedly nearly 80 times in the three years she had cancer, and often those stays lasted for weeks at a time.

This was hard for me, as her sister and her caregiver. As her sister, I slept next to her far more than I slept at home. So, when she was in the hospital, so was I. As a caregiver, it felt that I had somehow failed, especially as time went on, because I was supposed to know how to take care of her. Yet no matter how hard I tried, she still would end up back in the hospital.

For my sister, I think the line between home and hospital became a blurred one. She was always surrounded by love and support when she was a patient. In the hospital, her worries were soothed because it became more familiar. Eventually, it became easier to be a patient in the hospital than a patient at home. In her mind, nurses were more like friends than somebody providing care. And because of the copious amount of time spent there, it came to seem more like home than her real home.

The first time she was there, she could not wait to be discharged. The second time, we did a consult with a nurse because she seemingly did not want to come home. Looking back, I am sure that fear was driving her desire to stay. When there, the unknowns were not for her to worry about. If anything were to have happened, she had round-the-clock care and treatments could be given within moments. To her, that meant that she was always going to be OK.

With each hospital stay, it seemed harder and harder for her to want to leave at discharge. This was perplexing because when it came time for me to take her in, she would always beg to stay home.

It took almost three years for my sister’s remission to come. In that time, she was admitted to four hospitals over 100 times. Her longest stay was just shy of four months for her bone marrow transplant. Since then, her time in hospitals has thankfully become less frequent. Although they still happen, we no longer spend every Saturday in the hospital. To me, that’s progress.

I learned that a lot of time and energy goes into hospitalizations. Somewhere along the line, she started to feel that the hospital was her home — a safe haven of sorts when life was anything but easy. It was a place to go when she wasn't feeling well and a place that would make her better.

While part of those thoughts ring true, living in a hospital is not truly living. My sister has done far better when at home than in the hospital. Although she often needed to be there, I am grateful that she no longer spends more time in hospitals and clinics than she does at home.

Now about two years into remission, I am happy to say that I feel like the all the big storms have passed. Although a rare trip to the ER does occur, I now have perspective. Just like a summer rain, it is understandable that an admission is going to occur and every now and again for patients with cancer. But the good thing is that after each rainfall, there is a rainbow that follows.