In a little less than a month, I’ve gone from being a healthy person who does Cross Fit three times a week to having stage four lung cancer. Initially, it was a whirlwind of bad news that has been replaced by a more optimistic outlook. However, the cancer is still finding new and painful ways to attack me. This blog post will focus on some of the unexpected legal and medical consequences my diagnosis has sparked. It will be very personal, and I will try to be honest without being profane, but as Leah wrote “reality is not tactful.” (Between her and Rev. Mitra I will hardly have to write an original thought from here on out).

First, I’ll address the legal ramifications I’m facing. At 34, I never expected that I would have to consider drafting and signing a Healthcare Power of Attorney or Durable Power of Attorney. Until these brain tumors are destroyed, there’s a chance I could have a seizure, although I am on a steroid to reduce brain swelling and an anti-seizure medication. In addition, some other entirely unexpected event could happen along the way, so it’s better to have these documents ready and not need them than vice versa.

The durable power of attorney would basically allow my parents to manage my financial affairs, including taxes, banking and investments, if I am incapacitated for any reason. The Healthcare Power of Attorney would enable my parents to make medical decisions for me if I am unable to do so. It includes making choices about whether or not I want to be left in a permanently unconscious state or if I want to make an anatomical gift. These are never things I thought I would have to address at age 34, but this is what my life has become. Again, to quote Leah – “Devastation is a situation to which one quickly acclimates.” However, it still feels surreal at times and I am not sure I fully comprehend it all, since my treatment is still not yet underway.

Now I’ll address one of the newest and most painful assaults cancer has made against me. First, it took my voice (partially), then it stole my ability to drive (if only temporarily). But it also threatened my ability to have children. The data was unclear, but my oncologist said my medication could make me infertile. In addition, simply being diagnosed with cancer may have meant I had already become “sub fertile” for reasons that weren’t clear. The oncologist mentioned this during our first meeting, but the good news overwhelmed everything else and it didn’t really sink in until a few days later. Having children has not been particularly important to me up until this point, but I always assumed it was a possibility. I have thought about it in an abstract way and always wondered if I might make a good parent. I would like to think I would, but until now I’ve had a hard enough time running my own life, let alone caring for a tiny helpless person. Anyways, having kids isn’t exactly a priority at the moment.

I took it for granted that I had more time to sort out my feelings on the matter, but after my diagnosis I didn’t have that luxury any more. So on January 13, 2017, I went to the University of Cincinnati’s Oncofertility Clinic to try and preserve my sperm. It may be a moot point at this stage in life, because most potential partners probably already have all the children they want, and I’m sure I would love them as my own. If she doesn’t, then this would at least give us a chance to start a family. Again, I think it would be better to have it and not need it than the opposite. Even if it doesn’t work, there’s always the option of adopting or fostering children, of which I was already a proponent. On the other hand – children aren’t a necessity either, and it’s entirely possible I could find happiness without offspring at all.

However, this new attack has left me feeling angry and vulnerable. It was something I never even considered when this ordeal began. Although I never felt particularly manly or virile, I felt like something very private was being taken from me.

The whole thing made me feel very anxious and self-conscious for days before the appointment. Everyone at the fertility clinic was very friendly and supportive, but really it was the last place I wanted to be. I was even more uncomfortable because my dad took me to the appointment and waited for me in the lobby, because I can’t drive anywhere. The entire situation was sterile and unpleasant. I know there wasn’t really any reason to feel ashamed – this was all beyond my control. However, I couldn’t help feeling hurt and scared.

Thankfully, I only had to wait a few anxious hours to find out that I was in fact still fertile. It was a huge relief, and I was thrilled to know that the cancer wouldn’t take this very private thing from me. The rest of the day of was full of other appointments that occupied my time. I had an initial appointment for radiation therapy where I had to be custom-fitted for a mask that would immobilize me during the treatment next week and ensure that the radiation only hits the tumors. The process was a little unsettling and creepy. It felt like I was being fitted for a death mask, and it was tight enough that I could feel the blood pumping through my face.

In the end, I have some peace of mind, although I might not ever need it. Although I want to celebrate another small victory, I also hope this blog post helps raise awareness about this issue, sparks a conservation, or provides comfort to anyone dealing with the unexpected intimate devastations of cancer.

Once again, I didn’t have to wait very long for the results from the biopsy. I thought it would take several days but the doctor called 24 hours later on December 28, 2016, to tell me I have lung cancer. Everything was moving so quickly that it was hard to process what it all meant. In less than a week, I had gone from being a healthy guy with “laryngitis” to becoming a cancer patient. It was still difficult to understand that this was really happening to me. It felt like I was getting kicked in the stomach every other day with some other piece of bad news. In a way though, it’s good that the diagnosis came quickly. When my aunt was diagnosed with cancer she had to wait weeks for the results, and it was hard enough for me to wait just a couple nights.

However, the diagnosis on December 28 wasn’t the end – I knew I had cancer, I just didn’t know how bad it was. I still had to do an MRI to see if there any more brain tumors and a PET scan to see if the cancer had spread anywhere else. I also had to wait on a genetic analysis, which the doctor said would be very important for determining my treatment. The doctor said it appeared to be an aggressive genetic mutation that had already spread to my brain and neck. In other words, it was already stage four. I tried to remain positive but it felt like the situation was pretty grim because words such as “aggressive” and “stage four” don’t exactly inspire optimism.

On New Year’s Day 2017, my family and I went to go see Star Wars: Rogue 1. I almost broke down and cried in the theater because the hopelessness of the situation really resonated with me at the time. The characters went on suicide mission with a very grim ending. Jyn and Cassian saw the end coming and faced it without flinching. Although everybody dies, it was successful at the end because the message got through. I tried to hold on to that glimmer of hope.

I did the other scans and by now I was very good at lying still and waiting for bad things to happen. My friend Amanda said those skills qualified me to become a professional opossum. In the interim, I finally had an outpatient procedure to restore my voice, which was a great relief. Now, I could rejoin the real world and escape from my silent prison.

I had to wait another week for all the results to come back and meet with the oncologist on January 4. 2017. I went into the meeting with the notion that I probably didn’t have much time. I thought the only good news I would get that day was that the cancer hadn’t already killed me. However, my parents were much more optimistic and my dad especially was eager to fight. I had another surreal experience the day before my meeting with the oncologist when I googled what kind of questions I should ask at my first appointment. In what universe was this my reality at age 34? I took a notepad with me to the appointment so that I could write down what the oncologist said.

The results were better than I could have imagined. The MRI revealed that I had two brain lesions, although they were both relatively small – one was 1cm x 1cm and the other was less than 3mm. The list of lymph nodes unaffected by the cancer was a lot shorter than those that had been. However, the PET scan revealed that the cancer hadn’t spread anywhere else. In fact, it was actually a good thing that I had an aggressive mutated cancer, known as ALK, because there was a specific drug, Xalkori, that is supposed to be very effective at treating the cancer. The ALK mutation is present in only 3 to 4 percent of lung cancer cases, so it’s extremely rare. Xalkori might cause some bad side effects, in particular liver damage. The oncologist said the treatments would not cure the cancer but would control it and prevent it from getting any worse. Radiation would be used to destroy the tumors in my brain, without damaging other tissue. I also have to take a steroid to reduce the swelling caused by my brain tumors. Overall though, the main message was that I could live a relatively normal life for at least the next few years, if not much longer.

It felt like a last-minute pardon for a death row inmate. As my ex-girlfriend, Leah, said, this was a delimiting event. My life will be forever divided into the era before cancer and the era after it. In the weeks and months leading up this ordeal, I had been trying to determine what was important to me and what I really wanted to do with my life. I had revived some interests that had been dormant for a while, such my interest in scale models and French graphic novels. I had also been trying to expand my personal interests in terms of music and food.

Now it all became much more urgent. I had a second chance to accomplish all the things that I had been putting off, especially travel. I had been to France and I had always wanted to go back. I’d never been to New Orleans and I almost picked a fight with my dad right there in the oncologist’s office about how I wouldn’t let anything get in the way of that trip. Probably not the best idea, but I felt like I didn’t have a moment to waste.

I also went to the New Year’s Day service at St. Johns Unitarian Church. We had a special ceremony where we wrote down our regrets from 2016 and burned them. One of mine was not living life to the fullest. It was very cathartic, and I never want to have another New Year when I have that regret again.

In the coming days, it also became apparent that I was angry about my diagnosis as well, especially after the oncologist said I couldn’t drive. Since I did have brain tumors, he was concerned I might have a seizure and cause an accident if I was behind the wheel. I would never want to take a risk like that, but it was infuriating to descend even further into dependency. I love my parents, and friends, for driving me around while waiting for my radiation treatments to begin, but it was also very frustrating. First, I couldn’t talk, and now I couldn’t even drive myself.

I had planned to take a short trip to Cleveland as the first step in checking off items my Life List (I prefer that label instead of Bucket List). It may seem trivial, but Great Lakes Brewing Company was one of the first craft breweries that really captured my attention. Everything they do is pretty solid, although it may not be the most innovative. Before I was banned from driving, I had planned to start off my new life by going up to Cleveland and getting a drink right from the source at GLBC. Since I couldn’t drive, I briefly considered taking a bus up to Cleveland to make sure I kept my resolution. However, I got in an argument with my parents who begged me to stay at home. Cleveland in itself was not a particularly important destination, but it was symbolic of my new priorities and the urgency I felt. Reluctantly, I gave in.

My mom said I was very angry. I hadn’t really been conscious of it before, but after the argument about Cleveland I realized I was angry. I felt bad that my parents bore the brunt of my frustration when they were only trying to help. Despite my “laryngitis,” in December 2016 I had managed to secure a job offer as an E-learning specialist at a transportation company in downtown Cincinnati. It would have been my first professional job since leaving the Frankfort State Journal in 2011. It would have been a respectable salary, and I had even negotiated a 5 percent increase! However, I had to go in for the bronchoscopy on December 27, 2016, which was supposed to be my first day at the new job. They had already delayed the start date once to accommodate my persistent “laryngitis,” so I wasn’t surprised when they withdrew the offer.

I had also found an affordable apartment in Hyde Park that I really liked and was planning to move in after I got settled in at work. With the job gone, the apartment disappeared as well. It was very disappointing and frustrating. I had been working for months to re-establish myself as an independent adult and it had been within my grasp. Now I couldn’t even drive down to the grocery store by myself. I snapped at my mom when she offered to mash up my banana at breakfast because my throat was the sore the morning after my bronchoscopy. I had a short fuse for overbearing behavior before, and my tolerance now was even lower. Instead of rejoining the adult world, I was spiraling further into dependency.

When I started this blog a few months ago, I never envisioned it becoming personal in anyway, but my life has changed dramatically since then. This is the first entry in an ongoing record of my experience, thoughts, and emotions as I come to terms with my cancer diagnosis and treatment. I hope it helps people understand what I am thinking and feeling or provides some support to others who are going through a similar ordeal.

Unbeknownst to me, the warning signs of my lung cancer emerged right around Thanksgiving 2016. At first, it appeared to be a simple case of “laryngitis” resulting from a bout of bronchitis. However, the “laryngitis” persisted after the bronchitis disappeared. After about two weeks, I thought it might be something more serious. In the end, it lasted for more than a month, which was very frustrating and isolating experience.

I was working as a substitute teacher, but I had to cancel several days of work to try and give my voice a chance to recover. I also missed several social events because I wanted to stay home and avoid straining my voice. I could manage a hoarse whisper at best, and sometimes it took three or four tries to make people on the phone understand me. I also couldn’t talk on the phone so whenever a doctor or anyone called I had to have my parents answer. I felt very isolated, impotent, and frustrated because I couldn’t even have basic interactions on my own. I appreciate what my parents were doing to help, but it was also infuriating because I was losing my independence (which will be a recurring theme in future blog posts). To try and avoid taxing my voice too much, I began writing everything down on paper, which was awkward and inefficient. I also had to cancel several job interviews because my “laryngitis” just never went away.

Finally, I got into to see a doctor on December 22, 2016, who diagnosed the “laryngitis” as a symptom of my acid-reflux disease. He prescribed some medicine which didn’t really help at all, so I eventually saw an ENT specialist. The ENT specialist stuck a camera down my throat and discovered that my vocal cord was paralyzed. I couldn’t speak because my left vocal cord wasn’t moving at all and couldn’t contact my right vocal cord. Because the vocal cords weren’t touching, I couldn’t speak. My body compensated by activating muscles that weren’t even part of my voice box.

The ENT specialist said he could inject some medicine into my paralyzed vocal cord that would help it swell up and make contact with my other vocal cord so that I could finally speak. As a precaution, he also ordered a CT scan of my neck to see if there was anything that might be impinging upon the nerve that might explain why it suddenly became paralyzed. He assured me the results would come back “clean,” and I completed the scan the next day, December 23, 2016. They injected me with a tracer compound that made me feel all warm and fuzzy.

I wasn’t expecting results for a few days, but the doctor called back only a few hours later and said the results were “very alarming.” Although the CT scan focused on my neck, it also revealed tumors in my neck, lungs, and brain. He told me not to jump to conclusions, but obviously cancer was the first thing that came to mind. The doctor said I had to have a bronchoscopy, MRI and PET scan right away. The bronchoscopy would let the doctors take tissue samples which could be analyzed to determine if the tumors were cancerous. The MRI and PET scan would give them a better idea of other places to which the apparent cancer may have spread. My parents were devastated by the news – my mom’s face was completely slack and my dad has his head in his hands. However, he quickly rebounded and assured me we would all fight it together.

This led to a very stressful for Christmas for my whole family. My mind frequently operates on several tracks at once. Various trains pull ahead of others briefly, and then a different one takes the lead. Sometimes there is a huge collision where all the trains burst into flames and all the passengers die. Over the Christmas holiday, my mind jumped around on four main tracks. First, I of course hoped it was all benign and that everything would come out fine. I was a healthy person – I did Cross Fit three times a week! This wasn’t really happening to me, but someone else surely. I had never smoked and had no other symptoms, so I hoped this was a mistake or maybe some sort of Truman Show scenario where I would discover that I was really just a guinea pig under observation. Second, I was already of the mindset that if it was cancer, I would be victorious and all of us would go back to the Christmas service at St. John’s Unitarian Church next year. I’ll celebrate with a long-delayed return to Europe. Third, there was the possibility that something else an entirely, such as an infection, had caused the tumors.

Finally, I was also terrified because I thought that I was already a dead man if the apparent cancer had progressed too far. I tried to focus on enjoying my family’s company and love on Christmas, but I couldn’t stop wondering if this was going to be my last holiday with them. I enjoy brewing beer and bottled a bourbon barrel porter with my dad on Christmas day. We’ve bottled beer together for several years, and he has always been a cheerful and eager assistant. When I got anxious about spoiling the beer, he always calmed and reassured me. I couldn’t help shake the feeling that this might be the last batch we ever bottled. I tried to focus on the minutiae of bottling the beer by counting how many strokes of the pump it took to fill the 16-ounce bottles with beer (for the record, it took about 16-20 pumps on average). We also upheld our family tradition of driving around to see the Christmas lights in the neighborhood. I remember as a teenager being thoroughly bored by the situation, but now I wanted to treasure every moment like it was the last I’d ever have. We also watched my favorite Christmas cartoon “The Snowman” which almost brought me to tears. It was like reaching back into my childhood to find some safe refuge from all the terror on the horizon.

I tried to distract myself during the day with various activities, such as reading, video games, and renewing my interest in scale models. I had a number of miniature figures that I had bought more than a year ago and somehow had never found the time to paint. The figures came from a game called AE WWII which blends science-fiction, fantasy, and alternative history.  It helped engage my mind, because the figures are only 28mm tall and have a lot of detail to them. It required a lot of time and attention to paint them and glue them to the bases. Cross Fit was also a great respite because it’s so intense you can’t really think about anything else for an hour except finishing the next burpee or box jump.

But at night, I quickly found that sleeping was very difficult. It was very hard to be alone in my mind in bed every night. My brain was swamped with regrets and what ifs, particularly about a recent breakup from my ex-girlfriend. It took forever to fall asleep and I frequently woke up during the night. I have sleep apnea and use a C-PAP machine, and, although I usually don’t have any problem using it at night, it had become one more distraction that made it hard to sleep. So, I tried sleeping without it, which only meant that what little sleep I did get was not very restful.

After what felt like an eternity, I went in for the bronchoscopy on December 27, 2016. It finally started to sink in that this was really happening to me. The bronchoscopy would allow the doctors to take some tissue samples and they put me under light sedation. I was supposed to be in a “twilight” zone where I wasn’t fully sedated but neither would I be fully awake. However, I distinctly remember certain parts of the procedure, especially at the end.

I think the sedation either wore off early or wasn’t fully effective. Either way, I remember an intense choking sensation as my mouth filled with blood or some other fluid. Occasionally, a nurse would suction it out of my mouth. There was a mask over my face, but it fell off several times and I could see the doctors looming over me. I also remember moving my arms and legs around on the operating table and that the staff tried to keep me in still. They also talked to me a lot, especially at the end, and tried to assure me that the ordeal was almost over and that I had done well. It was an unpleasant situation that only added to my sense that I was beginning to be overwhelmed by this experience. There was nothing I could do – I was merely along for the ride as people continued to scan on my brain and stick me with needles on a regular basis. I also felt helpless because there wasn’t anything I could do to change the outcome. This wasn’t a test that I could study for, because the answer was already inside of me. Whatever the result was, it was going to change my life forever.