Losing Through Cancer

by Liz HilesSurvivor, Bladder CancerMay 25, 2022View more posts from Liz Hiles

I remember the first-time cancer claimed the life of someone in my life. I was eight years old and in second grade.

My Great-Aunt Dorothy lived in New Jersey with her Italian-immigrant husband, my Great-Uncle Steve. She was my favorite family member because every time they came into town to visit, it was like a week-long party filled with Italian food and huge family gatherings. If they came during nice weather, a bunch of family members would gather all the kids and go to the Cincinnati Zoo with 30 of us or more. I remember nothing but love and kindness from them. They were always interested in hearing what we were into at the time of their visit and would listen intently to whatever any of us kids had to say.

I don’t remember when I found out that she had lung cancer, but I vaguely remember being told when she died of cancer at 49. I was devastated. It was the first family funeral my parents ever allowed me to attend, and it left an impression.

Years later, I would experience losing both of my grandfathers to different cancers as well as one of my dad’s first cousins, who was like an uncle to me. My maternal grandmother survived breast and mouth cancer before passing away from lung issues as a result of decades of smoking.

I have lost others to cancer through the years as well. It never gets easier. Seeing someone lose their life to cancer is horrible. What is even more horrible is losing your own life to cancer. It is a painfully excruciating way to go.

I remember feeling these losses deeply; they still affect me today. I did my best to stay away from cigarette smoke and known cancer-causing agents. I didn’t drink. I was never a partier. I made sure my body often got the sleep it needed. Still, I was hit with my own diagnosis. Forced to mourn my own body.

I made a chemo chum during treatment. The second day of my first round of treatment I sat in a recliner across an aisle from a woman I’d seen the day before. We gave each other kind looks with half-smiles and half-waves.

I was exhausted and nauseated from treatment the day before and sat with my headphones on. My nurse for the day came over and hooked up a different medication. Lasix. I had been warned about this and was told that it would go through me quickly. The difference between me and most chemo patients is that I didn’t have a bladder, so I wouldn’t feel it as it was going through me!

I closed my eyes for a moment and accidentally dozed off. Disaster struck. The kind woman across the aisle helped get the nurses for me. A treatment or two later, I ended up sitting next to her and we struck up a conversation. Her name was Carolyn, and she had lung cancer. Although there was a huge age difference, we became fast friends and kept in touch outside of chemo. She often told me that I was her only friend that understood what she was going through.

When we both hit remission, we started meeting for meals on the weekends, and we went to a few yoga classes together with our local Cancer Support Community chapter. We celebrated life, talked, laughed, and then fought over who’d pay the bill. A few months later, Carolyn had a recurrence and declined rapidly. Her daughter, Leah, whom I’d never met before, graciously allowed me to see her in hospice so I could say my goodbyes. I didn’t even have her in my life for two full trips around the sun. Leah and I have remained in contact, and we both still miss her mother immensely.

During the pandemic, I got more involved in the AYA cancer space, and I made more connections. So far this year, 2021, has brought more losses. Six significant losses, three of which were people I had grown close to and directly communicated with regularly. I will feel these losses forever. They had so much more life to live, give, and do. 

Please note that although I am only discussing three losses in detail, it doesn’t make the other losses less significant. Any loss is significant. Only in the AYA Cancer community is losing young people normal. Losing people often doesn’t make it easier to experience life, yet being there with a friend all the way to the end gives more comfort to the person passing than it does to the living. Yet, the living appreciate knowing that the person they loved and cared for didn’t face the unknown alone.

I choose to remember my friends daily. I frame photos of them with the awareness ribbons of their cancers and keep them on a shelf in my office. I see their faces daily and remind myself of their fights, their lives. I put their birthdays and deathdays on my Google calendar and celebrate their lives by doing things that they loved to do. I share my memories of them and commune with others who knew them to keep their memories alive and honor their courageous lives.

My friend Curtis was about the same age as me and had been diagnosed with bladder cancer about six months before I received my diagnosis. He had a zest for life and an amazingly kind spirit. His cats ruled his roost, and he really wanted to make an impact on bladder cancer and men’s health issues. At the beginning of 2021, he was hospitalized and never returned home. His friends, family, and the AYA cancer and bladder cancer communities were rocked by the unexpected turn of events.

Wes was a hilarious ginger country boy living in Michigan. Every time we hung out virtually, we ended up laughing until our sides and cheeks hurt. He was diagnosed in his 20s with colon cancer that was unresponsive, and we had maybe six months of friendship before he was gone. The last two to three months of his life went by in a flash and ravaged his body to the point that he was nearly unrecognizable.

Probably the hardest thing I’ve witnessed, by far, is watching the decline of a good friend to an extremely rare form of lymphoma. Farran and I became instant friends. We met in a virtual meetup and very quickly started communicating outside of groups, despite a nearly 15-year age difference. Our lives had a lot of parallels, and we liked a lot of similar things. We had amazing, long, exhaustive conversations about anything and everything, yet we were completely comfortable with silences between us. We developed constant contact with each other. Direct messages, text, and endless Zoom calls until we both fell asleep and Zoom kicked us out of our room for inactivity.

As we learned more about each other and our diagnoses, I knew that my time with her would be limited, as she had an extremely rare disease that most do not live a long life with. In the last stretches, her quality of life would not be great either. The only thing that might give her some relief would be a bone marrow transplant, for which she’d been waiting for nearly a decade with no matches.

The summer after we met, she had multiple hospitalizations due to the progression of her disease, which included veins and arteries rupturing; blood gushing from open lesions caused by her disease; a worsening and critical heart condition; and sudden, dangerous drops in her blood glucose levels, among other things. At the beginning of that July, she was admitted to the hospital and ended up staying for seven weeks. Finally, she was discharged home on a Friday without resolution of the problems she was facing, only to be readmitted less than a week later with her heart rate nearly double what it should be. This readmittance was followed by a conversation with her oncologist about the steps of moving towards hospice.  

My beautiful, kind, adventurous, humorous 32-year-old friend who had only been in my life for about a year was having conversations about dying, and I lived almost 400 miles away. I helped her the best I could. I texted and DMed her inspirational and humorous messages and articles. I video chatted with her as a much-needed distraction. I tried to help her reconnect with family with whom she had lost contact. We laughed and cried together.  

We got on apps together with other friends and watched movies. We banded together and sent gifts and notes to her. A local mutual friend even graciously visited her in the hospital. That was the first time she ever had someone besides her parents visit her.

Her gratitude showed through the tears as she wondered why it took her so long to find friends like us. A question that none could accurately answer.

Over the next few months, Farran drifted in and out of the hospital. When she wasn’t at home or in the hospital, she was in rehabilitation facilities, her condition worsening and her awareness disintegrating. She never lost hope.

She told me repeatedly that she had things to do. She was not finished living life. She was not ready to die.

Read that again. She was not ready to die.

December 15th, 2021 was the last time I heard her voice. We had been messaging on and off throughout the day and had a brief call. She was getting moved from the hospital to a “hospice” rehabilitation facility. That’s how she framed it. I often wonder if her care team was truly straightforward with her, or if she was in so much denial that she didn’t realize it really wasn’t rehab. It was just hospice.

The conversation we had was hopeful. She sounded better than she had in quite a while and was more like herself. She reported feeling better and stronger than she had in months. Farran felt like she was getting back to herself. She was looking forward to eventually getting to go back home so she could do some writing.

I texted her Thursday, Friday, and Saturday morning. Just small, quick messages to let her know I was thinking about her and hopefully bring a smile to her face. She often went silent during times she was transferred from one place to another, so I didn’t think much of it when she did not answer my messages. Being transferred in and of itself is an exhausting process.

Then, Saturday evening, the text came from her father. The text I knew I’d get one day, but I never imagined it would have come so soon or at the time that it did.

Farran passed Saturday morning. According to her father, the nurse at the facility relayed that her heart, quite simply, just gave out. A lasting complication from the damage of one of the treatments she received years ago. Her death certificate probably says she died due to heart failure, but I know it was a complication from cutaneous T-cell lymphoma.

Even as I write this three and a half months later, I still cannot believe Farran is gone. I still reach for my phone nearly every day to send her a message. Messages that I can never send.

I miss her deeply. I miss her laugh. I miss her wit and sarcasm. I will always miss her.

There are some truths here that are unavoidable.

One is that most people experience losses due to cancer in their lives, but they hit very differently when you have survived cancer yourself. The losses truly shake you all the way to your core and from your head to your toes. The losses are felt more deeply. These losses are profound, and you wonder why you survived, yet they did not.

The second is that as a cancer survivor, you make deep, intense friendships with people, knowing that there could be a chance somewhere down the line that you will lose them. Those chances are multiplied when that person has an extremely rare diagnosis, like Farran.

Surviving cancer means that you learn to deal with grief and mortality more frequently and on a much larger scale than most. These are some of the toughest lessons humanity must confront in any lifetime. This does not mean that it becomes easier to deal with these losses. In fact, if you ask me, it makes it a lot harder, especially if you’re an empathetic person. It simply means that you become more experienced with facing them.

Our society no longer talks about challenging topics such as death and loss openly. Therefore we are not taught how to appropriately deal with these losses. Dealing with them more frequently gives us an edge beyond what our cancer muggle peers have experienced in this topic.

It also makes you stronger and more capable to deal with being the person to stand at the side of a friend’s death bed, holding their hand and letting them know that it is okay to just be done. If you are ever called to do this, it is both the hardest and most beautiful act of support you can ever display for anyone.

If you are an active participant in the AYA cancer community for long enough, you will experience these kinds of losses. There is no doubt about that. However, staying in this community and making amazing, unconditional friendships also gives you a huge opportunity to become a torchbearer and a storyteller. Staying in this community means that when you experience these losses, you have the supreme chance to carry on the memories of a warrior, a friend.

Whether you write about that person or simply tell others about a great time you shared together, you honor their life by living. Even the simple act of paying something they did for you forward is an ode to the spectacular life they lived, regardless of the length they lived it.

Every time you share a memory, do something they loved to do, pay an act forward, or they become your reason why you do things you do in your own life, you honor your friends’ courageous lives. These things mean that your friends did not perish in vain. They live on through you and the lives of the people you touch.

In this, losses become wins.

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