Chloe: Well, I’m still here, but I don’t know for how long. That’s as much certainty as anyone can give me. But I’ve got some good news: I no longer have any fear of death. But I am in a pretty lonely place. No one will have sex with me. I’m so close to the end, and all I want is to get laid for the last time. I have pornographic movies in my apartment, and lubricants and amyl nitrate …Fight Club
A pervasive condition that accompanies chronic illness is feeling left behind. The first time I noticed this feeling was when I was in the hospital in August. Eleven days is a long time. Each day was a lesson in acceptance. Each day seemed to illuminate more of what was in front of me in the months to come. With that illumination was the unavoidable list of things that I would be missing.
First, there is the list of things I would be doing that had not previously been on my agenda; chemotherapy, liver surgery, doctor visits, bloodwork, CT Scans, side effects. Entire days just waiting around to feel better. Sitting in waiting rooms for hours. Needles, needles, and more needles…
Then, there is the list of things I would be missing; days spent with children, days spent with people, dating, creative endeavors. Depending on the day I could be missing almost anything.
I talk to my friend Aaron almost every day. Together we have produced music, film, video, and other media. More importantly, he has been a great friend to me for a long time.
Aaron has Cystic Fibrosis (CF). I don’t remember when he was diagnosed, but it was very young, maybe six. CF was still a mystery at that time. The research progressed along with his life. In 1962, the average life expectancy for a child with CF was ten years old. By the time Aaron was born in 1975, life expectancy was around 16 to 18 years old. That number has been increasing by a few years for his entire life.
Imagine if you were told that you had about another five years to live for your entire life. I think that’s oversimplifying how Aaron’s life has progressed, but I am not too far off base there. Even now the average life expectancy is 37. As Aaron approached 40 years old, his lung function diminished to such an extent that they put him on the transplant list. He was not on that list very long when lungs appeared that were a perfect fit.
I looked up life expectancy for lung transplant recipients. I also recalled the personal experience of the father of our mutual friend Tamara that had a lung transplant around 1999. I was preparing for the worst. My knowledge of lung transplants was that they were experimental at best.
I think it has been six years since Aaron’s lung transplant. Who knows what the number is on the additional years he could live. I don’t think it is relevant. He doesn’t think it is relevant. He told me that he doesn’t want to know the numbers. I think he is 44 now.
How would you live your life if you had another five years to live? It’s a dumb question, but it’s also something I have considered often in the months since my colon cancer diagnosis. I don’t have anyone telling me the numbers, but mortality is always on my mind. It’s impossible not to think about mortality when I am planning for my death.
An Advance Directive is a document that allows you to make known your wishes for end of life care if you happen to be in a state where you can’t make a decision. If I fall into a coma for an extended period of time, what do I want to happen? Under what conditions would I want life support to be terminated? I can designate a person to be in charge of that decision if it comes to that. This is important because I am divorced. I also have children that aren’t of legal age. On whose shoulders do I put that burden?
I don’t own much in the way of assets unless you consider debt to be an asset. At least I had some sense to get life insurance that isn’t attached to a job when I could still pass the medical exam. I also enrolled in the life insurance benefit at my new job at the maximum amount I could purchase without getting a medical exam. That benefit starts tomorrow, January 1st. Less than a week before my liver surgery. Once again, I am divorced and have children. I have to plan what happens with that if I happen to die.
It’s unlikely that I will die, but death is a possibility. ‘Unlikely’ is not zero. It makes people uncomfortable to hear it, but it is my reality.
Another perspective is that I could get hit by an asteroid tomorrow, so I should have done this a long time ago. Many people do make these kinds of arrangements long before it is necessary. In my busy life moving from one perceived crisis to another, death has been far from my mind. I wish that I would have made these arrangements previously, but it is uncomfortable thinking about death at any time. Unfortunately, it is even more uncomfortable to think about when I am in a fight for my life.
I have been completely oblivious to Aaron’s reality even when he was explaining that reality directly to my face. Even when he was coughing constantly. Even with his giant pill jars full of enzymes, his travel nebulizer, and his challenging workout regimen that he stuck to like his life depended on it, which it did.
Back in August, Aaron happened to be in the hospital in New Mexico at the same time I was in St. Joseph’s in Houston. We spoke through Google Messenger. He was having pulmonary function tests that came back lower than expected. They kept him for days. He listed his hospital workouts; stairs, chi kung, walking. He kept me motivated.
One day, while struggling with post-op pain and all my visitors gone, I sent him a message, “I feel like everyone is moving on with their lives without me.”
“Well the simple answer is that they ARE moving on with their lives without you.”
“Thanks for the confirmation.”
“They have to move on with their lives. But it’s also what you are doing. Moving on with your life without them.”
“Don’t dwell on it. You focus on your health and jump back on their radar when you can.”
It’s good advice, and like all good advice, it’s just so hard to follow.
The truth is that the feeling is bull shit. It’s just a lie I tell myself. People were moving on with their lives without me before I had cancer. Everyone moves on with their lives on a daily basis. I don’t recall very many people checking in with me before I had cancer. Why would they do it now? Even my kids seem to grow without my permission.
In the face of what I can’t do right now, I can’t help but feel left out. My biggest accomplishments in the last four months have to do with mortality. What a way to trivialize that effort: to think about all of the ways that other people’s lives seem to be better than mine. Given the time, did I do anything better with my life. Maybe not, but the time was mine to trivialize. And even all of this description doesn’t come close to what it feels like when I am consumed by these thoughts.
I haven’t hiked in years, but I was trying to find a way to work it back into my life. I can’t really do any of the deeper hiking that I like to do. Not while my health is compromised.
I don’t know what I want from a relationship but I definitely like the company of women. Nothing seems like a good option in that arena. Whenever the subject comes up, I think about what a lousy prospect I am for a relationship or even just sex. I’m toxic for about a week after the chemotherapy. Maybe there are women out there that are into that kind of thing. This has been a fairly interesting subject for me. Would I be interested in dating someone that was in the middle of cancer treatment? I don’t think I’ve ever had to deal with the subject. It seems okay to me now, but what would I have thought six months ago.
These limitations often lead to thinking of some encounters as a ‘last time’. Through the holidays, will this be the last time I see this person? Nowhere was this more evident than seeing Emily. She drove back to West Texas. With surgery on January 6th, will that be the last time I see her? Troy’s son, Ryan, going back to New Mexico. Will this be the last time I see him? Family gathering for Christmas Eve? Many of my friends and family (nieces, nephews, cousins, aunts, uncles) I only see a few times a year. All of the people I visited this summer after thirty years. Will that be the last time I see them? I don’t have those answers, but the truth is that none of us do.
I will be fifty years old on January 15th. I’ve lived quite a life already. In one of the many conversations I’ve had with my son, I said, “I’m not sure what’s going to happen. My chances are pretty good. But still. There are a lot of things I want to do with my life.”
Having heard quite a bit about my life from friends, family, and myself, Iggy said, “You’ve lived quite a full life already. You’ve done a lot of things other people only dream of doing.”
I laughed, “Good point. I guess I have.”
“Don’t get me wrong. I’m not ready for you to go either.”
Sitting in the MD Anderson Emergency Room with my new friends, Arianna and her mother, “The doctor asked if she was in school. I said, yes, she’s a senior in high school. He said, not anymore she isn’t.”
“Yeah we have to travel back and forth to Pensacola. This is the closest facility equipped to handle her form of cancer.”
“We might be able to do it closer to home.”
“Yes. The oncologist here said that they might have someone that can do the treatments closer to home which would be great.”
“I still won’t be able to go to school.”
Arianna didn’t seem to want to explore this subject. I don’t blame her. Everything I’ve said above pales in comparison. I have ignored my own mortality. I am sick. I can see people moving on with their lives. There are many aspects of life of which I cannot currently participate. I’m fairly certain that I’m going to be all right. I can just jump back on when the time comes. But that 17 year old girl isn’t going to get her last year of high school back.