My interview with Michael Vance began on a slightly chilly morning at Buttermilk Falls. The two of us sat at the picnic table, and as soon as I asked my first question, Michael was already open and willing to tell me everything.
A few years before his diagnosis, he began to feel short of breath. He was 45 at the time, and he smoked cigarettes since he was a teenager, so it seemed logical to him that the smoking was the probable cause. However, he then had some very out of the ordinary experiences. One day he woke up from a nap and his entire right arm was paralyzed. It was more than just the feeling of your arm falling asleep, he said. The arm was just “flopping there”. Vance went to a neurologist but nothing appeared to be wrong after taking a few tests. He saw the same neurologist a few years later, and that’s when the cancer was found. Vance told me the neurologist said, “Often times a cancer diagnosis is preceded by a neurological event like that.” Vance did receive a chest x-ray, however the kind of cancer he has doesn’t show up on x-rays. Therefore, he had to do a CAT scan. Vance went into detail. “Went to work in the morning, in a few hours got cat scan, almost as soon as I came back to the office the doctor called me. And I knew that something wasn’t right, because when you take a scan or do some sort of test, they’re not supposed to tell you anything. They’re supposed to wait and let the doctor tell you. But I could see in their faces that something was not right. And the two women kind of looked at me and said ‘good luck’. And well that’s not good. And I went back to the office and the doctor called and said ‘make sure you’re sitting down’ and he said that I had at least a 10 inch tumor in my chest. They didn’t know whether it was, you know, benign or cancerous at this point, but it looked like what it turned out to be- which was liposarcoma.” Vance was diagnosed 12 years ago, in 2001. This time period was difficult to remember, however, because his memory has been faulty due to all the pain medication he has been taking in the past decade. Fortunately, Vance has been able to cut back sustainably, and his memory is coming back.
Liposarcoma is a rare form of cancer; only a few thousand of cases a year exist in the U.S. Vance explained that “lypo” means “fat”, and this cancer is a cancer of the fatty tissue. Vance gestured to himself with a slight laugh and added, “Which I never had much of. Seemed kind of ironic.” The tumor ended up being 20lbs, 17 inches long. Normally, says Vance, this occurs in the upper arms or thighs, so it was unusual for the tumor to be in his chest. Due to its large size, the doctors assumed it was growing inside him for several years.
“There aren’t very many suggestions for what causes liposarcoma,” Vance tells me. “The only one sure thing that I found was exposure to a specific kind of radiation – which is remotely possible because I had worked at Cornell for a number of years as a carpenter, and had worked in a couple of radiation labs at different times doing repairs and stuff. So that’s a possibility. And the other thing about that is that one of the guys who I worked with at Cornell, just about the same time, also got liposarcoma. So… but there’s no way to back track it and prove it or anything. Not like it makes a big difference anyway it’s more of a curiosity. He had it in his thigh and the last I knew he was doing well.”
The surgery could not be done locally because of the extreme complications, but he did want to be seen locally. Rob MacKenzie, the director of the hospital here, ended up taking a look at him. Vance had seen him before, so this was a safe place to start. “He brought me in and showed me the scan; my wife was with me and my mouth just dropped open, and we looked at each other in disbelief. The thing was so massive and everywhere; it started down kind of at belt line and reached over to my right lung, and was completely involved with right lung, and came back over and completely wrapped around my esophagus and was reaching toward my heart at that point.”
To handle this extremely frightening situation, Vance needed to go to New York or Boston. Since he has family in New York, that is the place he chose. He went down to a cancer specific hospital and was, “…hooked up with excellent surgeon, a very sweet older woman, tiny little thing. She was very good at explaining everything to me, and was not very positive in her description. At first she was afraid she would have to remove a large portion of my esophagus where the tumor was wrapped around it, and that would involve a gastric pull up. That’s when you pull everything else up to bring two parts of the esophagus together. That would be a lot more debilitating and a lot more recovery time. More risk involved. She was able to peel it off the esophagus and scrape the surface and deal with it that way, and follow it up with radiation.” This process thankfully worked and Vance has had no cancer since. Consequently, there were a lot of issues with the side effects of his radiation. At the point of the interview, Vance has just been in the hospital a week ago prior for a few days. His esophagus flared up again and he couldn’t swallow for a couple of days
Vance went into more detail about exactly what the surgery was like. “First thing they did was try and shrink the tumor with chemo. It was so big and so involved in the esophagus and lung, they wanted to try. They hit me double hard because it doesn’t normally work. Made me go to the hospital for a week to get original chemo. The first dose wasn’t all that bad, I don’t remember getting that ill from it at that point in time. Second and third doses every 3-4 weeks were progressively worse; had a terrible, terrible time. Promised myself I would never do chemo again, not even to save my life. Literally turned me inside out; just a terrible experience. After 3 doses, not only did it not shrink, it continued to grow. I stopped chemo, and scheduled surgery a month later. August. I was in the hospital 11 days. Took out ¾ of my right lung. Several ribs. Mostly just to gain access to the area. Didn’t have to remove any of the esophagus. But I instantly lost 25 lbs between the blood and fluids and stuff, quite a shock physically. News was great, though. She got everything and was very positive and hopeful that would take care of it.”
After the 11 days he was released from the hospital, however he could barely walk. A month after that he started radiation treatment in Elmira, and would go down every day for 6 weeks, 32 doses of radiation. “Which again really knocked me for a loop. Really took every ounce of energy I had out of me. Basically I could just sit there and vegetate. Heavy doses of pain medication. Surgery left me with chronic pain, not just normal surgical pain.” The doctor told him this, “…occasionally happens with the particular approach she used which was going from the side instead of the front.”
“I tried to go back to work after about 4 months,” Vance explained, “And really was not able to function at all. The place where I worked, the people were extremely nice. Anybody else would have said ‘get out of here. you’re not producing anything,’ but they let me stay on for a while. I did end up getting laid off with a bunch of other people a few months later, and I went to the employment office, and they basically told me I wasn’t hirable and should apply for disability. So I did that and I’ve been on disability ever since.”
Vance did not let himself sit and vegetate, however. He had a part time job 4-5 years ago working at Longview driving the van. He drove the seniors to the grocery store and the clothing store a couple times a week which he really did enjoy. He needed that to have the strength and will to get out of the house. After a year and half of this part time job, his father died. Also around that same time, he developed an infection called empyema which is, according to Vance, a sack filled with fluid off of the lung.
“I went to see my doctor for a regular check up and as soon as I took my shirt off he saw the infection. They sent me back down to New York City to deal with that. The surgeon had to go in, open it up, and drain it, cut the sack out, and left me with an open wound… wanted it to heal from the inside out. It was a deep wound. It progressed pretty well for a few months at which point she brought me back in and decided to close it up. Had plastic surgeon in there with her who rebuilt the area because she scooped out so much tissue. That all seemed pretty well until a couple months later it got re-infected. So of course, I went back down to New York, they opened it right back up, did the same thing- they had to take out all the work they had done, and left me with an open wound again which I still have to this day. It’s just not healing beyond a certain point. I’ve got, like, a 2 and a half inch hole under my scapula that goes in a couple of inches, and it actually connects to my lung… because sometimes you can hear air coming through it from my lung out the wound. It’s kind of bizarre.”
Vance counted and noted being in the hospital 15 times in the last 3 years. Started smoking again which, “…made me feel like I did before I got sick, kind of; smoking was a big part of my life for a couple years.” After smoking for about a month, he started coughing up blood and chunks of lung tissue. This caused him to need embolization. Vance explained to me exactly what that entailed. “They go in through groin, all the way up through your artery and into the area that’s actually bleeding, and sometimes they clamp it, sometimes they actually glue it shut, but one way or another they stop the bleeding. And that happened 4 separate times. I would go back to smoking, in a few weeks I’d be coughing up blood again, and be back in the hospital for more embolization.”
Vance declared that he doesn’t think he will smoke again. He realized finally how he was affecting the people in his life and wanted to make a change. However, after years of hospitalizations and infections, things started to add up.
“I feel conquered in a way, beaten down. I had been feeling that to the point of not being able to come back from it, but I’m trying to wrap my head around not accepting that and pushing on, trying to find something that I can do, whether it’s another part time job or volunteer work. I gotta find something that interests me and gratifies me to some extent so I don’t feel like just a leech and worthless. Cancer has made me feel worthless and weak.”
I asked him what has given him strength. I wanted to hear the things he was involved with that helped him get through his difficult moments. “It almost sounds silly but prayer helped me a lot. I’ve always believed in God but I’ve never been very religious or gone to church regularly or anything like that. But I had a lot of discussions with ‘My God’ through it all. There was a whole network of people praying for me. My mother in law found, I think on the web, she found some place where you email them the story of the patient, and they have this group of couple of thousand people all over the country and they all like at the same time pray together for you. And even if it didn’t do anything, the psychological affect of that is very uplifting.” The group is for any disease and any struggle, not specifically just for cancer.
“It sounds kind of cliché too but it has made me appreciate life more and health. I feel like I always did appreciate life. I was always glad to be alive and enjoyed it. You know, I look at a sunset and just… be amazed. That kind of stuff. But it definitely increased that and knowing it could all be gone, and you don’t know what comes next. It made me worry about my family’s future.”
His wife originally connected him with cancer resource center. Vance said she was diligent with getting him involved with events and groups a couple years ago. She became frustrated because he followed through with so little of it. The walkathon made a difference, however. That was the first event he did with CRC. Vance also decided to look into the men’s breakfast group which wife recommended a couple years ago. A few weeks before this interview he started going, and right away knew it would be beneficial.
“Most of my friends just happened to moved on. They aren’t in the area anymore, pretty isolated, so it felt pretty good to sit with a bunch of guys of all different ages, not going through the exact same thing, but they do understand a lot of what you’re going through… without even talking about it sometimes. So that’s nice. They all seem like really nice guys. Bob – I’d only been to one breakfast, and when I was in the hospital this last time for the swallowing problem, Bob showed up at my door with a card signed by everybody. So that was really nice. I hadn’t had that kind of interaction in many years.”
After hearing about the incredible and moving gesture, I wondered what Vance was doing with CRC now. “I already volunteered to help with the walkathon this year. I get to wear an orange vest and direct traffic. Donuts. Little things like that, seems kind of silly in a way, but they really can make a big difference in your whole outlook on things. And I also started, just last week, I went to this medicinal yoga class… medical yoga class for people with illness. Focus on all those tweaking hard to do stretches, more meditation.”
As a yogi myself, I was very excited to discuss the benefits of yoga with him. I informed him of the yoga class that is connected with CRC at Island Fitness, and he hopes to check that out in the near future. Also, we discussed journaling, specifically gratitude journaling. I explained that every day, you’re supposed to write three things that you are grateful for. Then, after a certain number of days, your mind actually begins to think of the gratitude independently without any effort. Your brain learns to scan for the good things. Vance said he will try this type of journaling, and has been meaning to journal differently for quite some time.
I asked about his children. Each of his children dealt with his illness intensely and with extreme difficulty along with dealing with their own personal issues. Today, his daughter Tyler is married to a man also named Tyler, and they have two children. His older son, Jonathon, he described as, “A good talker about everything else. He can talk to anybody about anything, it’s always amazed me. Even when he was little, he could walk up to a complete stranger and start a conversation and ask intelligent questions and stuff.” His youngest son, Dylan, is now married and had a baby last year. Vance told me, “In talking to D recently, I call Dylan ‘D’, I’ve been able to see my illness a little bit more from his perspective, which has been interesting because he felt like when I got sick, he said something to the affect of, ‘I had to step up and be the man of the house’.” Vance then added, “He’s got a good heart, he’s got a great heart, all the kids do. I’m very proud of that.”
Vance concluded with saying he needs to figure out what he wants to fill his days with. He needs to stop focusing on the bad and start focusing on what will make him happy and fulfilled, but he doesn’t know what that is yet or how to approach it.
“My son in California [Jonathon] said he’d love it if I took the time to write the story of my life. He said that would mean a lot to him. He feels like there is a lot of stuff he doesn’t know. Which of course there is, you don’t tell your kids everything. But I’ve had quite an interesting life. Lot of ups and downs.” Vance did tell me a few stories about his life, and what he might fill this book with. After a few minutes, I knew this was a book I sincerely hope to read one day. Vance confided in me, “I don’t know what I’m capable of. I’ve been doing some carpentry stuff around the house, which I love doing, but I inevitably do too much. And then when I do too much it takes me days and days to recover from that. I pretty much know I can’t have any physical job. I just don’t have the stamina. I’ve got to figure out something.”
Despite the struggles and traumatic experiences that Vance has experienced, there was still a spark in his eyes when he spoke to me. His bravery to tell his story was extremely admirable and something that deserves honor and respect. There is a lot to be learned from a man who can sit at a picnic table and tell a total stranger the deepest parts of his spirit.
Written by Siona Stone