In this episode of the Cancer Interviews podcast, Kevin Jerge shares how he survived Oropharyngeal head & neck cancer with modulated radiation therapy and went on to author the book titled Go To Your Happy Place.
In 2013, Kevin, from Jackson, Tennessee, tells host Bruce Morton he was attending a trade show in Chicago when he experienced an unusually sore throat, sore enough that he sought medical attention when he got back home on a Friday. His general practitioner took a look at his throat and told Kevin he would need to have his tonsils removed. Kevin thought this could wait a week or two, but his doctor told Kevin he would need a tonsillectomy the following Monday.
Once the procedure was completed, Kevin was told his tonsils had cancerous cells, but there remained lymph nodes that resulted in a diagnosis of a type of Stage IV head and neck cancer, known as oropharyngeal cancer.
At first, Kevin was told that because it was Stage IV head and neck cancer, out of an abundance of caution, he would have to undergo a regimen of chemotherapy treatment and radiation treatment. Upon further review, his oncologist said the chemotherapy would not be necessary, but that it would be necessary to undergo seven weeks of radiation treatment, known as Intense Modulated Radiation Therapy.
During those seven weeks, Kevin had to go into the hospital five days a week. He had to be fitted with a plastic mask that went tightly over his face, which at times made it difficult to breathe. Kevin was then bolted to a table and slid into a tube where the radiation targeted nine areas of his neck. He said the inside of his neck felt like sunburn and yet he was being forced to go back out into the sun. Not only was it painful to eat or drink, but he lost the function of his tastebuds, and experienced tinnitus, a ringing of the ears. Because his food consumption was sharply reduced, he lost a lot of weight. Perhaps the only bright spot was that Kevin got to eat lots of his favorite flavor of ice cream, mint chocolate chip. That said, for months after the conclusion of the treatment, he still felt the burning sensation in his throat.
While Kevin was undergoing radiation treatment, he opted to run toward head and neck cancer rather than run from it. As uncomfortable as each session was, Kevin told himself, he “gets” to go in for treatment, not that he “has” to. He also benefited from the undying support of his wife, Elizabeth, his kids and his network of friends. Kevin did say there were times that being on the receiving of such care could be a challenge because there would be instances in which his biggest supporters just didn’t know what to say or do. When that happened, he extended care to them.
Eventually, Kevin reached the point everyone diagnosed with cancer seeks, that being his last day of treatment and the hospital’s bell-ringing ceremony. Kevin says when that happens, everybody in the building knows about it, the doctors, the nurses, non-medical staff and of course, the patients. He said his oncologist brought out what looked like a beat-up, century-old bell.
Kevin’s journey inspired him to write a book. It is titled, “Go To Your Happy Place.” The title was inspired by advice given to him by a nurse when he was physically and mentally dealing with the plastic mask fitted tightly over his face, being bolted to a table and getting radiation shots in nine places around his neck. She suggested he think of things that made him happy, and for Kevin, that went going back to numerous episodes within what he said was a very happy childhood back in Buffalo.
It is that childhood, all those unforgettable fun experiences with his chums, that provides the backdrop for “Go To Your Happy Place,” episodes that are interwoven with Kevin’s account of his the early stages of his cancer journey.
Additional Resources:
“Go To Your Happy Place” by Kevin Jerge https://tinyurl.com/Go-To-Your-Happy-Place
Transcription:
Bruce Morton: We don’t hear a lot about head and neck cancer, but it is out there, as our guest on this episode can attest. Kevin Jerge of Jackson, Tennessee, found himself with a major hill to climb when he was diagnosed with Stage IV head and neck cancer, but he has survived, and wants to help others with a similar diagnosis, that he wrote a book on the subject. This is the Cancer Interview podcast, and I’m your host, Bruce Morton. Now here is Kevin Jerge, and Kevin, welcome to Cancer Interviews.
Kevin Jerge: Bruce, so great to be on your show and thanks for having me. I really look forward to this interview today.
BM: Kevin, it is our custom to start out by learning more about our guests and their lives outside of cancer. So, if you would, tell us a bit about where you are from, what you have done for work, and what you do for fun.
KJ: I am one of five boys, originally from Buffalo, New York. I come from a traditional blue-collar family. My dad was a firefighter. I grew up in a time in the 70s and 80s in Buffalo, when it was a great place to be a kid. I went to high school locally, then went away to college in Pennsylvania, played sports, football and baseball at a small school, Westminster College, graduating in 1986. Then I came back and started a career, started a young family. Started off in pharmaceutical sales. Had three children with my first wife and raised them in Buffalo, and really had an interesting career as I moved from pharmaceutical sales into some other industries and got to travel all over the United States as part of that. So, I really had an interesting career. Right now I am in the process of consulting for a number of companies, but in the process of looking for my next opportunity and excited to see where that may take me. My wife is Elizabeth and she is from Jackson, Tennessee, and we have two daughters, so in total I have five children. Much like my youth, it has been great raising my family of five.
BM: And what do you do for fun?
KJ: I am one of those competitive people, Bruce. Any type of game I am interested in. It could be a board game, it could be an athletic game. I picked up the game of golf, I enjoy golfing on a regular basis. Anything that can get my competitive juices flowing, I want to be a part of it.
BM: Now to your cancer journey. Kevin, for each of us diagnosed with cancer, there was that stage when we noticed something about our health wasn’t normal, and that began a chain of events that led to a cancer diagnosis. For you, when and how did that occur?
KJ: In 2013, I was preparing to go to a trade show in Chicago. I had a sore throat and had some discomfort and wasn’t sure what was causing it. I saw my primary care physician. He said it looks like I have a little bit of inflammation and put me on some antibiotics, and I went to the trade show. At a trade show, you are constantly talking, you are constantly engaging with people. I noticed my throat getting drier and more irritated, so about the second to last day, I called a friend I knew who was an ENT. I told him I had seen my primary, now I am having trouble swallowing. My speech is changing a little bit, people are telling me. I told the ENT I want to get looked at. He said no problem, that he would take a look at me when I return home. That was on a Friday. He took one look and said my tonsils would have to be removed right away, as in the following Monday. In the back of my mind, I thought he was seeing something he really didn’t like, or he’s seen before. I wasn’t in that much discomfort that I didn’t think I couldn’t wait a week or two. So, I went through that surgery. I don’t know if you have had a tonsillectomy, but it is pretty overwhelming in terms of pain and discomfort, more than I ever expected. He took the tonsils out that Monday and intended to biopsy those tonsils. A couple days later, he called and said he got the results back, said the tonsils had cancerous cells, but that he was feeling really good about the surgery, and believed by removing the tonsils, he had removed all the cancer. Just to make sure, he said he would schedule a scan. It was scheduled for about a week and a half out, so they gave me time to recover from the tonsillectomy. I met with my radiation oncologist, and he had gotten the scan back and that there was good news, that my cancer was only a couple of my lymph nodes, two or three hot spots. I am not sure how good this news was, because I thought they had excised the tonsils, they are out of me and the cancer is gone. I wasn’t even thinking the cancer had spread to my lymph nodes because of the confidence that my ENT had. The oncologist said I needed to heal up, but we are going to attack this aggressively with radiation. At that point, my head is spinning a little bit. At that point, I said I wanted a second opinion because I had never gone through anything like this in my life before. So, I went up to Vanderbilt, which is about a two-hour drive from where I live and met with an oncologist there. She reviewed my files and said my lymph nodes should be attacked because my cancer was Stage IV, indicating a spread. I went back to my doctor in Jackson with those results, and he said this cancer can be defeated with radiation. He said I have a pretty good profile, that I was a young man in pretty good shape, and thought I would respond well, that I didn’t need chemotherapy. So, I talked to my wife, we prayed on it, and decided I was going to attack this with the radiation. That’s what we did, and it was a seven-week treatment that started in the summer of 2013.
BM: But part and parcel of all this, Kevin, was that you heard the words ‘Stage IV.’ How daunting was that?
KJ: When you hear Stage IV, you know there is not a Stage V. That was pretty grave to me. Then I dug, like most people, and asked a lot of questions. One thing about me is that I am always inquisitive, so I was asking everyone I ever interactive with, a lot of questions to get as much information as possible. My doctor said Stage IV is a classification that we follow. He said he could show me what he was looking at and showed these hot spots. Out of an abundance of caution, he said they had to go after these spots and get them. From that point forward, I told myself I may be a Stage IV, but I am not’that’ Stage IV, and it became a mindset for me.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you please give us a ‘like,’ leave a comment or review below and share this story with your friends, Kindly click on the ‘Subscribe’ button below and click on the bell icon, so you’ll be notified the next time we post an interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
As for when you first got cancer, at our end, we admit we don’t know a lot about head and neck cancer, so I have to ask, with this diagnosis, now you were about to undergo radiation treatment and you no longer had your tonsils. What did all this feel like? Could you talk?
KJ: Looking back, I thought I repressed a lot of the pain from that original tonsillectomy, but it was pain I had never experienced before, and it is not something you can put your hands on. If you hurt your elbow, you can rub it or you can put ice on it, but this was inside of my throat and the pain meds they prescribed for me did nothing. I was walking around the first two or three days like a zombie. You harken back to your days as a kid and there were one or two kids in the neighborhood who had their tonsils out and they ate ice cream for a week, and you were almost envious. That is not what I am going through. I really couldn’t eat, I couldn’t talk. It was pretty difficult pain for about a week or ten days. Intense pain. And after that, I really felt better each and every day after that, only to get ready to go into treatment.
BM: In terms of the radiation treatment, what was the toughest part of the regimen?
KJ: When you hear ‘radiation,’ you think it is a process that will burn the cancer out of me; but what I didn’t understand when I went in for the first appointment was the way that they had to administer it. They called it an IMRT, or Intense Modulated Radiation Therapy, and they actually made a plastic mask and they molded it to my face. It was very tight and I had to lay down on a table for my treatment and they bolt my head with screws to the table so I wouldn’t move and they knew exactly where to pinpoint the treatment, so it was hitting those lymph nodes in the affected areas around my tonsils in the area where they had been removed. It was a scientifically well thought out plan, but I wasn’t ready for it. I didn’t know I was going to be bolted down to a table. The mask was so tight on my face, I couldn’t move. It was claustrophobic, and that was what I was going to be going through for seven weeks, five days a week.
BM: I am trying to put some sort of silver lining on this, Kevin. At least during this phase, were you able to pig out on ice cream?
KJ: I did have lots of ice cream, and here is the advice my doctor gave me. Going into this, knowing what I was going to go through, when they were burning my throat. They wanted me to put on weight. They wanted me to put on calories because I was about to experience tremendous weight loss because I wasn’t going to be able to eat. So, during that recovery phase I was enjoying my mint chocolate chip ice cream as much as possible.
BM: You mentioned this seven-week treatment regimen. At any time during those seven weeks, maybe near the end, did you sense that things were getting better?KJ: I ran into one of my doctor’s friends in the hallway one time. He was leading a group of people on their rounds, and he asked me why I was in the hospital. I told him and he said I was in good hands because my oncologist was an outstanding oncologist. The first couple weeks I didn’t feel many of the effects because it is a slow burn, but it gradually got worse. Every week after that was terrible because it was like having a sunburn on my throat and being exposed to the sun every day after having a sunburn. The pain never went away. It actually got worse after my treatment. When I was finished, with my treatment, that burn continued for weeks. So, was there a feeling of accomplishment that I had gotten through the treatment? Yes, but those last few weeks, I was dying to get to the finish line.
BM: You mentioned the sunburn in your throat. Did that pain transfer from head to toe, or was the worst part mental anguish, the fear that this pain wasn’t going to end?
KJ: Before I started, I made up my mind that anything I attacked in life, whether it was sports or business, you have to have a plan. A lot of that is mental. I really tried to get myself in the right mental mindframe. There really were no secrets. The doctors knew it was going to be a tough treatment, based on the location, based on what they were doing. So, I tried to go in there every day with a positive mindset. The changes that were happening to me physically, the exterior to my throat, my loss of hair in the back, everybody told me that was going to happen. So, being prepared and understanding really helped me through that treatment journey.
BM: Let’s talk about hopefully another positive aspect of your journey. You had mentioned your wife, Elizabeth. What was she like as a source of support?
KJ: They were great. Sometimes during this experience I felt lonely. There is something insular about it. When you hear that you have cancer and it’s Stage IV, you start thinking about your mortality a little bit. What I realized that during all this, my family, my friends, who were offering support, oftentimes they don’t know what to say or how to engage you. Once I was figuring that out, I was trying to engage them to make them feel comfortable and gain an understanding; and I think it gave me a lot of strength to know that (a) I have the support, (b) I am going to get through this and these people are going to be special in your life forever, so there was a lot of gratefulness and gratitude that I had.
BM: Let’s talk about the finish line because obviously you did get there, so Kevin, describe what it was like when you felt like you were close to it.
KJ: When you have that last treatment, and the Kirkland Cancer Center where I was in Tennessee, has its bell-ringing ceremony. There is an awareness in that building that somebody is going to finish their treatment. The patients know, the doctors know it. So, I was walking down that hall and my doctor was holding this big, old schoolbell that looked beat up, like it was 100 years old, and I was going to be ringing that bell. That bell signified to me, and at the time I had a tear in my eye when it happened, that I was through the worst part of this. That bell signified, “I’m done.” Hopefully, it means I am done forever. I love all of these people at the hospital, they are some of the most special people in the world, but I hoped I would never have to see them again. It wouldn’t be the worst thing. My family is up in Buffalo and the sound of that bell rang all the way up to Buffalo. The outreach after that last treatment was great.
BM: As for the here and now, physically, is there anything today you cannot do that could do, pre-diagnosis, or are you pretty close to 100 percent?
KJ: I am pretty close to 100 percent. Some of the things I had to deal with were the residual side effects of that radiation. I lost my tastebuds, and that lasted for several years. So, some of the things I used to enjoy from a taste perspective were gone for quite a while. That was a little bit disheartening, so I had to work through that. I was encouraged in that I was told by a lot of people that my taste will return. That was first and foremost because I had lost quite a bit of weight during the treatment. Many people with oropharyngeal cancer end up on a feeding tube because they are unable to get any calories. I luckily avoided that. So, I lost my taste, then I had some dental issues. You know, a lot of radiation flying around makes your teeth a bit more brittle. I also had some slight hearing loss, plus tinnitus, the ringing of the ears, so there were some tradeoffs along the way.
BM: We mentioned at the top that your cancer journey inspired you to write a book. Why don’t you tell us about it?
KJ: The title is “Go To Your Happy Place.” That first day when they bolted my head to the table and I had a little congestion in my nose and I didn’t realize how tight the plastic mask was going to be, and they were putting me in that tube. I really felt panicked a bit because I couldn’t breath, I couldn’t clear my nose. After the treatment, the tech asked how did it go, and I said it was unnerving, as I was congested. I was by tech many patients take Xanax to relax a little bit, then the tech said I should “go to my happy place under that mask.” I said okay. Then I thought about my childhood and I had all these great stories and I thought to myself I would start to think about those things. The stories in the book had always been in my mind and my heart, but this book was a way to weave two things together, my childhood and my cancer journey. Writing the book was a great, cathartic experience. The book is available on Amazon.
BM: It sounds like you hit the bull’s eye, covering your journey and your childhood. Now we want to finish the way we always do, and you have already covered some of this subject matter. But imagine you have crossed paths with someone freshly diagnosed with a form of head and neck cancer. They have more questions than answers. There is plenty you can share with this individual, but if there is one point you wanted to make, a point that stood above all others, what would it be?
KJ: First of all, I tell everyone to slow down because things seem to be moving fast. I understand when you get that diagnosis, you are going to have a lot of questions. That’s good. Don’t be afraid to ask questions. So many people go into it and get on the treadmill of treatment and admit I didn’t know this or didn’t know that. From my own experience, I say ask the questions. Don’t leave your doctor’s office until all the questions are answered about your treatment, about what to expect. They have all the information, but if you don’t ask, sometimes you are not going to get the information you need. I think information is powerful, Bruce. The more information you have, the more you can be prepared, and then that becomes a mindset. Once you develop that mindset, you are going to be in a different place. There are going to be tough times, tough treatments, tough side effects. If you have the right information and are prepared, you can overcome all of these.
BM: Excellent. Kevin, thanks so much for your time, thanks for being with us on Cancer Interviews.
KJ: Thanks so much for having me, Bruce. This was a great interview and time well spent.
BM: We are going to close as we always do by reminding you that if you or a loved one are on a cancer journey, you are not alone. There are people out there, like Kevin, who can aid your cancer journey; so, until next time, we’ll see you on down the road.
Additional Resources:
Book: Go To Your Happy Place by Kevin Jerge https://tinyurl.com/Go-To-Your-Happy-Place
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