Life is about taking a moment each day to absorb all that is happening.
It was hard to see my sister so sick. I spent so much time with her that the side effects I saw were gradual. She was so swollen from the steroids that I began to call her the marshmallow man. She had no sense of balance from all the time in bed, her fatigue was so great that she would fall asleep mid-sentence and she still required 20 liters of oxygen per minute just so that she could breathe. When they saw her, they were shocked. You could see it reflected in their eyes. I was just grateful that she didn't seem to notice.
When she'd sleep, that is when I'd lose it. Seeing a sister that I'd known my whole life so ill, so unlike the person that I'd known forever, was beyond hard. Although I'd seen her in so many situations and cared for her through everything, this was the closest I had ever come to losing her. Since her diagnosis, we had always been told that she would be okay. Even though it was bad, she'd make it. She had age and her health on her side, but I was now watching the shift from her having all the benefits on her side to the world being stacked against her. It was a jarring reality that I was not ready to face.
In the hospital, her machines beep all the time, like if the cartridge has an air bubble, if she rolls over on a tube or if her oxygen dips to low. It is as if they need any excuse to let us know that her survival is very much dependent on their functioning. Even with countless nights spent in a hospital, I still have not figured out how to sleep soundly. When she is home, though she has no machines, the sleep is no less disturbed. Without the machines, there is a greater worry because I feel as though I am the machine, constantly checking on her to ensure that she is okay and functioning as she should.
I can remember a few nights in the hospital that a nurse would find me slumped over my laptop out of pure exhaustion. One morning, Stacey came in and knelt down beside me, “You need to get some sleep,” she said.
Another Nurse, Eric, would always encourage me by telling me of the benefits of sleep. I felt as if the entire staff of the fifth floor was conspiring against me. They used to tell me that it wasn’t for me, it was because it would make me a better caregiver. I was well aware of my own exhaustion, but I could never balance getting rest and not being beside her at night. I honestly don’t think that any of her care team has ever seen me in a state that wasn’t sleep-deprived.
In April of 2015, I collapsed in the family waiting room of the fifth floor. It was my body conceding to what my mind had refused to acknowledge. After a week in the hospital and the first real break that I received since she was diagnosed, I had to agree. My body was better rested and my mind felt sharper than it had in months. We later learned that I collapsed because of a seizure disorder.
It was not that I blamed myself for the disorder that bothered me, it was that I had spent a week laid up in a hospital and left my family to cope with my sister, a patient that they didn’t know and a person who they had not been caring for this past year. Had I listened to the advice given to me, then maybe this wouldn’t have happened. I found myself wanting the world to slow down and pause, so that I could get better and press play when I was ready. Of course, life doesn’t work that way.
My sister was doing okay. She had actually rallied since going home. She was eating, drinking, walking and doing all that she was supposed to do. We encouraged her to think about what she wanted to do and we tried to begin making that happen. Her life had already been so short at just 28, and we all wanted her to strive for more.
After many last-chance treatments and all of the complications that forever shadowed my sister, in October of 2015 I heard the word that I never thought would be spoken. She was in remission and would be consulted for the ever-desired bone marrow transplant. On Nov. 22, the day before Thanksgiving, she was told that it was a go.
The month of December was full of 12-hour appointments with a new care team and countless work-ups to prepare for the biggest battle in her treatment thus far. In contrast, I kept thinking back to 2014 and just how different life had become. Back then, we were wondering if she would make it through the holiday season. This year, we were preparing to transplant, with the hope of giving her countless more with her family.
As we had so often faced a grim outlook, Jan. 14. changed that. After everything that had transpired, she received her bone marrow transplant. I knew that the road was still very long, and the unknowns of the future were plenty. But underneath, I felt a sense of relief and joy. For the first time since July 11, 2014 I felt like I could breathe. I kept that in mind, knowing that she lay beside me, miserable and unable to eat or drink from the mucous that filled her chest.
In February, I turned 25, which puts me closer to the age that my sister was when she was diagnosed with cancer. She was still in the hospital on my birthday, but she was moved to quarantine post-transplant in time for her 29th birthday in March. It was a celebration with a few friends of more than just turning 29, but officially being cancer-free. This year has been filled with many firsts since her diagnosis, such as eating out, going to see a movie, bowling, swimming and mini-golfing. It has also been a struggle to return to a sense of normalcy post-cancer. In these past few months, she has spent less time in a clinical setting for as long as I can even remember.
July 11 is the two-year anniversary of the diagnosis, and three days later marks the six-month anniversary of her bone marrow transplant. As I reflect on these last two years, I think about all that we have experienced, both good and bad. I can honestly say that I would not go back. I am not the same person that I was yesterday, and most certainly am not the same person I was two years ago. We have met wonderful people, many who I consider very close friends and family. We have experienced an abundance of love, seen how generous people can be and have received so much kindness and compassion.
As these may just be dates on a calendar to most, and possibly even her, they mean so much more to me. They are proof that regardless of how dark the future may appear at times, we should appreciate what is in front of us. I had no idea that she would still be here with us or that I would be speaking of cancer in the past tense as I write these articles. As we look forward to a year without cancer, I am so thankful that what is happening now is not what I thought life would be.