The Next Chapter in This Cancer Journey


You can't begin the next chapter if you keep re-reading the last one.

I have fought diligently to remember every moment in this long journey-- 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 that I will have and that I should live in the moment. Even still, most of July 11 has evaporated from my mind. Moments in time were jumbled together and everything seemed blurry.

We weren’t at the hospital, but when my older sister called and said that we needed to come, I knew it was bad. Every worry and every wonder that I had for the months leading up this day were now confirmed. When we got to the hospital and read the dictation, it was more than I could wrap my head around. My dad and I stood in the hall embracing, trying to figure out what it was that 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. It is a six letter word that often permeates society. Nobody ever explains the change that will occur in your life and how nothing will ever be the same.

I have written down most of this time as it has 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. Though the cancer was everywhere, it had not metastasized to her bone morrow. Nearly a year later it would, though.

Although I don't remember it all, there are specific moments that stick out in my mind. Like when she found hairs on her pillow in August. For the first few days, she wrote it off that it was coming from our family dog. That came to an end when, in the shower, more hair was in the drain than on her head. After she came out, we buzzed her head and she slowly lost the rest. It had been something that she said wouldn’t bother her, though it did once it actually started happening and was a visual reminder of her cancer. I hadn’t cut my hair in years. But for her, I cut 12 inches and donated it to Locks of Love.

Some days were better than the rest. She would do okay and, though in my head I knew she had cancer, we could almost be normal. It was always hard when she woke up in the morning after a bad night. Because to her, a bad night meant a bad day. It was hard for me to understand how she could present herself so well to doctors and friends but once we were alone, it would all unravel.

My boyfriend, Cadance, once explained this to me 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,” he said.

Going back to even before she was diagnosed, chronic pain had been an ailment that had plagued her. She would take Advil before a hot shower and crawl into bed and fall asleep before it wore off. More often than not, that failed. 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 is for them to be okay. You want to take away that pain and make sure that they are comfortable. When that becomes impossible, the feeling is indescribable.

When she was in the most pain, she swam in a sea of opiates. She took liquid morphine, and we warned about having strangers in the house and to store it in a secure place. She was placed on a Duragesic (fentanyl) patch for long-term pain relief, but we still continued to dose high quantities of oral narcotics. These drugs changed who she was. In combination with steroids, her mood wings were much more drastic. At one point, she was given Neurontin

(gabapentin) for neuropathy. Her hallucinations worried my parents and 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 freak out. 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 she has a fear of spiders.

In October, we once again found ourselves in the emergency department because of her uncontrollable pain. It was at that time when we were introduced to the palliative care team. I wish with every fiber of my being that we had known them sooner. There is a wonderful nurse Kate, who is the RN for palliative. In my eyes, Kate is an angel that happens to walk among us. When my sister was at her sickest, I asked Kate how is it that 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, before this is over, you will long for it to end before she will be ready,” she said.

It was because of Kate and all the great nurses who were willing to teach me and answer all of my endless questions that I was so prepared. As her care was ever-changing and more acute, I was always learning. 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.

In November, my sister got pneumonia. As the days wore on, it was evident that she would be in the hospital for Thanksgiving. It was a devastating blow. In some ways, this was just one more thing that cancer had taken from her and from 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 losing my mind altogether.

As the days faded into December, 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 staff decorated ornaments as keepsakes. We also had a paper wreath for the door and Christmas lights to make her room glow. Just because she was in a hospital, didn't mean that we could simply skip Christmas.

One the Dec. 16, Dr. Young 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 the conversation was winding down, the nurse 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, the doctor 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 gone in. 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. But 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.

It was still hard to see her 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 others saw her, they were shocked. You could see it reflected in their eyes. I was just grateful that she couldn’t see it.

When she was finally beginning to get better, she suffered a seizure and everything changed. I would lose it when she would fall asleep. Seeing my sister so ill, so unlike the person that I had known forever, was very hard. Although I had seen her in many situations, this was the closest I had ever come to losing her. It was a jarring reality that I was not ready to face.

In the hospital, her machines beeped all the time-- if the cartridge had an air bubble, if she rolled over on a tube, if her oxygen dipped too low. It is as if they needed 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 to sleep soundly. When she is home though, the sleep is no less disturbed. Without the machines, it is a greater worry because I felt like I was the machine, constantly checking on her to ensure that she is okay and functioning as she should.

I can remember many nights when nurses would find me slumped over my laptop out of pure exhaustion. One morning Nurse Stacey came in and knelt down beside me “You need to get some sleep,” she said. Another nurse, Eric, would always remind me of the benefits of sleep. I felt as if the entire staff was conspiring against me. They used to tell me that it wasn’t for me, it was because it would make me a better care giver. I honestly don’t think that any of them have ever seen me in a state that wasn’t sleep deprived.

In April of 2015, I collapsed in the family waiting room of 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 had received since she was diagnosed, I had to agree. My body was better rested and my mind felt sharper than it had in months.

After all the bad news, the heartbreak and uncertainty that we have faced, things were changed on Nov. 23. She was approved for her bone marrow transplant. The month of December was full of appointments that all became worth it on Jan. 14. Bryan infused her with her cleansed cells and she was officially in a remission.

I know that the road is still long and the “unknowns” of the future are plenty. She does continue to struggle and has had ups and downs since the transplant. Tomorrow is the big day. I get to take her home. She has not been able to sleep in her own bed since Jan. 4. No matter how anxious and nervous she is, I know that she is happy to be heading home.

Though I know that this isn't over, I feel a sense of joy. A new chapter, that I hope has less plot twists than the last, is about to begin. For the first time since July 2014, I feel like can breathe and like the thoughts in my head are a little less jumbled. Things are finally coming back into focus.

Related Videos
Image of a woman with a brown hair tied into a bun.
Image of Annie Bond.
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Related Content