Memories and reflection on the past two years.
I have fought diligently to remember every moment in this long journey and to memorize each event, every voice and every face. All the while, I have tried to remind myself that this is life, the only one I should live in the moment. Even still, most of July 11, 2014 has evaporated from my mind. The memories I do still have blur together and from July 9 to July 17, it is all a jumble in my mind.
We weren’t even at the hospital, but when my older sister called and said that we needed to come, we all knew that it was bad. Every worry and every wonder that we had had for the months leading up this day were now confirmed. When we got to the hospital and read the dictation, my dad lost it. He and I stood in an embrace in the hallway trying to wrap our heads around what we were facing.
It was shocking. No matter what I had thought, to see it in black and white is a whole other thing. Nobody ever really explains cancer-- not really, anyway. It is a six-letter word that permeates Hollywood and we say it in our society often. Nobody really ever explains what it means, though. Nobody describes the change that will occur in your life and how nothing will ever be the same.
I think that the sensation of feeling like the world was spinning so fast around me in that moment is a feeling that I have hung on to. It captures how I have felt over these past two years. The feeling of having absolutely no control and having to let go is one that, though I have not reasoned with, is an ever-present reality.
I wrote down a lot as it happened. I don’t know why, but I had the wherewithal to know that I would not be able to remember it all.
My sister had stage 4 Hodgkin lymphoma that caused her to glow like a Christmas tree when given a PET/CT scan. It had not metastasized to her bone morrow yet, but nearly a year later it would.
If you take each individual thing that she has been through, you’ll see that it is amazing what the human body could endure. Adding it all up and realizing that one person has experienced so much bad in just two years leaves me breathless. To rattle it all off is like reading a bibliography of a cancer study group. But the difference is that all of this happened to my sister.
When she was hospitalized for the first time, we did not leave her alone. She was so full of fear and we didn’t yet understand how long she had or what was going to happen. My mom spent the first night, I the second and Dad spent the third. It was at that moment that I realized my place was beside her. Even now, it’s hard to put into words why. She was so vulnerable and I felt a need to protect her. Doctors would come in wanting to disturb her and I would stand and politely deny the request.
“We need to speak with her,” they would say.
“She is resting. What can I do for you?”
They hated me for it, but anything that they had to say could either be spoken to me, or it could wait until she woke.
There are specific moments that stick out in my mind, like in August when she found hairs on her pillow. For the first few days, she wrote it off that it was coming from our family dog. That came to an end when she took a shower and more hair was in the drain than on her head. After she came out, we buzzed her head down and she slowly lost the rest. It had been something that she said wouldn’t bother her, but the visual reminder that she was sick with cancer stung far more than she had expected it to. I hadn’t cut my hair in years. For her, I cut 12 inches and donated it to Locks of Love.
From the very beginning, I tried to have my sister join online forums so that she could find people who are similar to her and to possibly learn ideas. Or she could even share her own experience and help others see what she had been through and give them hope. It was a battle that I lost.
As her prognosis changed, it was hard to not be angry with people. They were all very well-intentioned, but they used to offer her words of encouragement that I felt were often false hope. They used to say that she could beat this and that she should ignore what doctors say because people defy odds all of the time. It seemed very unfair that they could say these things. How could they promise her a happy ending when nobody knew what the ending would be?
It was always hard when we woke up in the morning and she was in a bad mood. I knew that the day would not be a good one. To her, a bad night meant a bad day. It was never a bad moment or morning. No, it meant an entire bad day. It was hard to not let it get to me because everything in my life revolved around her. It was sometimes hard for me to understand how she could present herself so well to doctors and friends who came to visit, but once we were alone, she would reveal her true self. My boyfriend, Cadance, explained this to me once in a way that nobody had ever done. “She doesn’t have to have a filter with you because she knows that no matter what, you will stay.”
Some days were better than the rest. She would do OK and, though in my head I knew she had cancer, we could almost be normal. Other days, though, were so very hard. Difficult weeks would spin out of control and come Saturday night, she would be in such distress that I couldn’t manage it anymore and I would have to take her in. Sometimes it would be in a car, but on more than one occasion she was so bad that it required the paramedics and an ambulance.
Going back to even before she was diagnosed, chronic pain plagued her. She would try to dose Advil before a hot shower and crawl into bed and fall asleep before it wore off. More often than not, that failed to keep her asleep through the night. Even once diagnosed, it took a very large quantity of narcotics to control or manage the pain. These were some of the hardest moments because all you want is for your loved one to be okay and to take away that pain and make sure that they are comfortable. When that becomes impossible, the feeling is indescribable.
With each drug, her reactions were worse. We were facing a future with little to no options. Dire circumstances were before us on more than one occasion. Each time, we sat her down and explained what she was about to face. To even come up with words, let alone the right words, is more challenging than anything that I had done in my life.
When she was in the most pain, she swam in a sea of opiates. We dosed liquid morphine and warned about having strangers in the house, making sure the morphine was kept in a secure place. She was placed on a Fentanyl patch for long-term pain relief, but we still continued to give high doses of oral narcotics in combination with the Fentanyl. These drugs changed who she was. When coupled with steroids, her mood swings were much more drastic. At one point she was given Gabapentin for neuropathy. Her hallucinations worried my parents and even more so, scared her because she could not tell the difference between reality and her own mind.
One night, she was walking in the halls with my dad and began to have an emotional breakdown. She was terrified because she thought that she was going to fall down the stairs. The design on the carpet, in her mind, was a spiral staircase and so she was afraid to move. Later that same night, she swore that spiders were crawling all over the walls. This was even more terrifying for her because of her fear of spiders.
In October, we once again found ourselves in the emergency department because of her uncontrollable pain. It was at that time we were introduced to palliative care. I wish, with every fiber of my being, that we had known them sooner. There's a wonderful nurse, Kate. In my eyes, Kate is an angel that happens to walk among us. My sister and I are lucky to know her. Throughout this journey, she has told me many pieces of advice that have helped me more than one would ever know.
When my sister was at one of her sickest moments, I asked Kate how you know a patient is ready to be done fighting. Her answer was one that I was shocked to hear. “If this is the path that we are going down, then before this is over, you, too, will long for it to end long before she will be ready.”
As her care was ever-changing and sometimes more acute, I was always learning as I went along. I was so lucky to have the best teachers one could ever desire. Not only did every nurse teach me and answer all of my endless questions, but I also I went home with the confidence that they had given me. And when unsure of anything, I knew that they were a simple phone call away.
The sterile environment of a hospital is taken for granted until you have to try to duplicate that at home. I cleaned everything at home, including all the medical equipment that I gathered to give the best care that I could at home. No matter how much effort I put in, my worry of infection was always present when I was treating her at home. As a human being, though, we defy the logic of sterile. We breathe and live in this world. Try as one might, but you can not clear the world of germs.
In November, my sister got pneumonia. As the days wore on, it was evident that she would be in the hospital for Thanksgiving. This was a devastating blow. In some ways, this was just one more thing that cancer had taken from her and all of us. With the help of the hospital, we moved Thanksgiving to fifth floor and kept as many traditions as we could.
Alex, a transport at the hospital, has always been a source of humor and friendship. I can remember many nights that he would come up and joke around with me. We found ourselves making jokes so dark and morbid that they defied explanation. So often, the laughter he provided was the only thing stopping me from crying and from losing my mind altogether.
The days faded into December and I did my best to keep the holiday spirit alive. I went home at 4 a.m. every day and came back at lunch time. I brought new crafts and decorations to make her room a winter wonderland. I made a tree for the wall and the staff decorated ornaments as keepsakes. There was a paper wreath for the door and Christmas lights to make her room glow. It was not discussed, but we did not have any idea if she would make it home for Christmas or not. That wasn’t what was important to me. What was important was that we didn’t skip Christmas altogether just because she was in the hospital.
One the 16th of December, a pulmonologist came into the room and pulled up a chair. A wonderful nurse, Kristi, followed, and we began to discuss how she was doing and what the next few weeks would look like. As he was winding down, Kristi asked the question that my sister had wanted to ask, but was too terrified to hear the answer.
“Will she be able to be home for Christmas?”
After a brief pause, he gave the best answer of all. “If she is not gone by the 24th, I will personally drive her home.” My sister burst into tears and for the first time in months, they were tears of joy.
I tried to ready myself for what bringing her home would mean. She had been in the hospital for so long and she was coming home a very different patient than when she had left. We still had no idea if she would make it through the pneumonia and many wondered if they were making the allowance because this would be her last Christmas. To me, it didn’t matter. I was just happy that she was coming home and we could enjoy the holiday together as a family.