Jeff Knapp survived tongue cancer | Cisplatin | Mandibulotomy | Tracheotomy | Atrial Fibrillation | PEG Feeding Tube

On this episode of the Cancer Interviews podcast, Jeff Knapp shares the arduous journey he went on to attain survivorship from tongue cancer.  First, his cancer was misdiagnosed, then to address the correct cancer, he had to undergo a mandibulotomy, in which his jaw was cut in half.  Next, he was on a PEG feeding tube for close to six months.  The journey robbed him of his ability to enunciate and ended his career as an actor and a commercial spokesman.  But, along with wife Robin, he lives his life to the fullest, as they both continue to travel and compete in endurance sports.

In February 2014, Jeff’s cancer began when he noticed a lump on his neck.  Subsequent x-rays revealed a tumor in this throat, and doctors said it had probably metastasized to his lymph nodes.  A doctor took a syringe and extracted liquid from Jeff’s neck.  After an hour-long wait, the doctor returned and said Jeff had adenoid cystic carcinoma, an incurable cancer.  It goes to one’s nerve ending, and, said the doctor, it spreads to the brain and the lungs.

The surgeon wanted to remove the lymph nodes, after which there would be 33 treatments of radiation and chemotherapy.  The operation, a right modified neck dissection, was six weeks later, but when Jeff regained consciousness, the doctor told Jeff he was halting the operation because he could not determine what type of cancer Jeff had.  Six days later, he was told he had HPV, human papilloma virus. 

When Jeff Knapp completed the chemotherapy, he had lost 40 pounds, down to 155.  He suffered from the effects from the radiation around his face, brain, cheeks and throat.  The chemo left sores on his gums, cheeks and throat.

Through all of that, Jeff survived HPV and soon was running marathons again.  But in 2019, cancer returned.  When putting a scope up Jeff’s nose, he saw a tumor.  According to the doctor, Jeff had become the seventh person on record in America to get HPV a second time.  This time, the surgeon said Jeff needed a mandibulotomy, a procedure in which Jeff’s jaw was sawed in half.  Jeff switched surgeons, and he said the only available option was a left radical artery forearm flap to the base of the tongue.  His tumor was on the right side of his tongue.  Once it was removed the space in his tongue had to be filled.  Doctors took his left arm from the wrist to the elbow.  Jeff has a scar where they removed arteries, veins and nerves to rebuild his tongue.  Because the previous procedure had taken a chunk out of his neck, the surgeon had to take Jeff’s pectoral muscle and extend it up to the neck.  Jeff Knapp woke up with nine holes in his body.  He was unable to speak, and the Cisplatin he was given as part of the chemotherapy had reduced his ability to hear. 

Jeff was emotionally crushed from his new inability to do the work he had done his whole adult life.  However, he has Robin’s undying support, they are able to compete in endurance sports, travel expensively, visit the world’s premier art museums, and Jeff says he still does well at Jeopardy.

By way of advice, Jeff Knapp says to anyone diagnosed with cancer to concentrate on the next task at hand because to look at the journey in its entirety will be overwhelming. 

TRANSCRIPTION

Bruce Morton: A cancer journey can affect one in many ways.  Our guest on this episode had his professional life upended when he was treated for tongue cancer.  But he survived and we are going to hear how he deals with survivorship.  He is Jeff Knapp of New York City, and this is his story, so, here he is, and Jeff, welcome to the Cancer Interviews podcast.

Jeff Knapp: Hi, Bruce.  Thanks for having me.

BM: The first thing we want to do with our guests is get to know them a bit better by learning about their lives, exclusive of cancer, so, if you would, Jeff, tell us about where you are from, about your professional career, and what you do for fun.

JK: I am from Nanuet, New York.  That’s right by what was the Tappan Zee Bridge, now the Andrew Cuomo Bridge, and since 1990 I have lived on the Upper West Side of Manhattan with my wife, Robin.  What I do for fun is endurance sports.  My wife and I have run over 70 marathons.  I have done the Ironman Triathlon five times and maybe what I am most proud of is, in 2012, a bunch of us went to Durbin, South Africa and ran the famous Comrades Ultramarathon.  That’s 56 mountainous miles through the desert.  What I did for a living, I was an actor.  I had the most luck in commercials, I was a model when I was a younger man, and I was a spokesman for many Fortune 500 companies.

BM: We want to hear about your cancer journey.  For all of us diagnosed with cancer, there comes an unfortunate time when our health goes from normal to abnormal.  For you, when did that happen, and what happened?

JK: It was February 2014.  I was shaving and I noticed a bump on my neck.  At first, I thought I was getting the flu.  Then a month to six weeks went by and I said to my wife, Robin, who is an RN, I said to her this isn’t going away.  She said I was due for a checkup anyway, so I should go to my GP and ask him about it.  Lo and behold, he was concerned.  I wasn’t.  I just wanted an antibiotic.  Nonetheless, the doctor sent me across the street to the hospital for some x-rays.  I was incredulous.  I had just run a 56-mile ultra marathon in 2012, so I was in some fantastic shape.  I went to the x-ray room.  Meanwhile, my wife worked at that hospital, and asked me to see her on the hospital’s sixth floor.  She said the chief ear, nose and throat doctor wanted to see me.  I went to his office and lo and behold, he said men of your age often have cancer.  By this time, he had the x-rays and said that I definitely have a tumor in my throat, and it has probably metastasized to my lymph nodes.  You could have knocked me down with a feather, because I still felt fine.  I told the doctor I didn’t have any symptoms, no cough, no sore throat, no pain, no lack of energy.  I was pretty shaken up, but something had to be done about this.  He then took a syringe and took a sample of liquid from my neck.  Then I had to wait for an hour.  It turned out when I went back, there was very bad news.  He said I had adenoid cystic carcinoma.  That’s a cancer you don’t beat.  It is a cancer that travels along your nerve endings.  So, he said it would go to my brain and to my lungs.  I lived six weeks with that diagnosis, but what I had to do was, I had to go for an operation.  The surgeon wanted to remove the lymph nodes and then I had to continue after that with 33 treatments of radiation, accompanied by chemotherapy.  The hospital told me that it will cure me, but when this is over, we are not going to be friends.  I did do that.  During the operation, which was six weeks later, I woke up to my wife, Robin, and the surgeon, and he said he was stopping the operation because he couldn’t tell what kind of cancer I had.  They were going to go through my windpipe and remove the offending tumor; but he sent out many, many frozen samples to many places, and he said he was going to put a hold on the operation because he didn’t know what he was operating on.  Six days later, I was told I had HPV.  I had the same cancer as Michael Douglas, Val Kilmer and some others.  I spent the rest of the summer, like a good soldier, going to my radiation and my chemotherapy.

BM: Chemo is never pleasant.  For you, what was the toughest part?

JK: It is a cumulative effect.  After the first treatment, I ran four miles!  But by the end of the summer, when I had my last, things were different, and I had lost 40 pounds.  I went from 195 to 155.  I was told to consume ice cream and milkshakes.  I also had the radiation around my face, my brain, my cheek, and my throat.  What the radiation does, it causes a kind of a leprosy in the mouth.  You get white sores on your gums, your cheeks and your throat.  Not pleasant.

BM: We’re confident you will be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to 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 will 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 out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”

Now, we are speaking to you, Jeff, when you first got cancer, and I want to slightly change subjects a bit and talk about your professional life.  With all this surgery going on, were you still able to work?

JK: That’s a very good question.  I could not work that summer.  That was impossible.  But I feel I am a pretty tough guy, and those endurance sports, they test your mind.  If you can get in good physical shape, your mind follows suit.  I want to pat myself on the back and tell you that I went through my radiation and my chemotherapy with a smile.  My hospital enrolled me in a dental program because as you can imagine radiation, around your teeth is not a good thing.  Each week I went to the dentist, and they took good care of me.  I was down and out, and I bounced back.  I finished my treatment at the beginning of September.  In November, I ran the Philadelphia Half Marathon.  I am very proud of that.  I put on all sorts of muscle.  The surgery did not affect my enunciation or my looks, and I did go back to work. 

BM: I think I know the answer to this next question, but I want to hear the answer in your words, and I ask about your primary source of support, your wife, Robin.  You had the advantage of a seasoned health care professional close at hand.  If you would, talk to us about how she was a source of support for you.

JK: My Robin is an RN with 30 years of experience, and she is also a wonderful person.  My wife is positive, and I don’t mean false positive.  She loves life.  Every little thing makes her happy.  So, her compassion and her professional skills kept me alive.  Meanwhile, things became worse for me, and she became much more instrumental, but even in 2014, she was there for the chemo, and she was there when things got tough.  I spent quite a lot of time in bed for about a month.  It affects everything.  Thank goodness for my Robin.  She was everything to me. 

BM: You had said early on in this protracted treatment phase you had not lost the ability to enunciate; but when things take a turn for the worse?

JK: If you have HPV, of the cancers out there, it is not the hardest one to cure.  My hospital said we are going to throw the kitchen sink at you, but we’re going to get it.  They say if two years after the procedure, you are free of HPV, you are pretty much out of the woods.  I made it to five.  On my fifth anniversary, I really thought that was going to be it.  Unfortunately, on my fifth anniversary, the doctor put the scope up my nose, he froze, and said, “What’s that?”  Lo and behold, a tumor that looked like a potato.  I looked at the scope and it was disgusting.  He was dumbfounded.  I had been told I was the seventh person on record in America to ever get HPV back.  I had some pretty bad luck.  I had been radiated 33 times and given the maximum dose and now the cancer had returned.  The surgeon said to me he was going to have to operate “the old fashioned way.”  The first thing I had had in 2014 was a right modified neck dissection.  Then in 2019, I had a mandibulotomy.  That meant they sawed my jaw in half.  Unfortunately, this surgeon showed me a picture of what he’d done, which didn’t do any good for me.  I didn’t respond well to that and started shaking.  My hands started to shake, then my arms, then my legs.  At that point, my 30-year career as a successful actor was now over.  When he wanted to know if I was having a problem, that’s when I started shopping around for another surgeon.  At this point, the only option was a left radical artery forearm flap to the base of the tongue.  They opened me up and the tumor was on the vase of my tongue, the right side.  They had to remove that.  Once they removed it, they had to fill in the space.  They took my left arm from the wrist to my elbow.  I had a scar where they removed artery, vein, and nerves to rebuild my tongue.  They had taken so much of my neck, that the week before, as if I didn’t feel down and out and scared enough, the new surgeon, who I respect and loved, said he would have to remove my right pectoral muscle to extend it up to my neck so that he would have something to fill in to make the neck look a little better to protect me if they have to radiate me again.  Because I was only the seventh person in America to get this again, the care team wasn’t sure what to do.  So, now, maybe I did need more radiation, because things can happen.  A stroke can happen because the radiation affects the arteries to the brain.  I had an eleven-and-a-half-hour operation.  I was under anesthesia.  I was asked if this affected my brain, and I say I am still very good at Jeopardy, and I like to read a lot.  That keeps me positive and keeps me alive.  After the operation, I woke up with nine holes in my body, which I didn’t have when I went in.  I woke up with tracheotomy.  I couldn’t talk.  I couldn’t hear well because chemotherapy robs you of your hearing in some cases.  Cisplatin is the chemo I was given, and it robbed me.  They tape your eyes shut during surgery so that the cornea doesn’t burn out.  I woke up with no one around me.  I couldn’t move, I couldn’t talk, I couldn’t hear, and I couldn’t see.  I was so discombobulated, so frightened that I went into Afib (Atrial Fibrillation), when your heart races, and can’t stop.  I woke up later and a nurse asked me to please calm down.  At that point, my Robin walked in.  It was 7:00 a.m.  She took my hand, and the nurse said my readings were going back to normal.  Now I had Robin, I had a sense of touch.  I stopped shaking and realized I was at the end of my brutal operation, and the Afib went away.  I still have to take a medication for it, but I have had no trouble since then.  That brings us to the end of that operation.  I spent two weeks at that hospital trying to get back on my feet.  All the while, I had a feeding tube in my stomach.  That’s how I ate for six months.  That operation was in 2019, so I have made a lot of recovery since then.  If I overenunciate, like I am doing now, I am okay.  Sometimes I foam up, sometimes I dry up, but I take singing lessons every week.  I really enjoy that, and it puts me in a positive frame of mind.

BM: We have heard you articulate how difficult this has been physically, but mentally and emotionally, how did you deal with the inability to do the work you have done all your adult life?

JK: It’s crushing.  And I have had many episodes of fury.  It is hard to call it depression when you don’t know if it’s depression, but I do have anxiety attacks on occasion.  Actors become actors for different reasons.  Maybe they love the profession and maybe they didn’t get enough love at home.  For me, it was a mixture of both.  I did everything on my own, Bruce.  I created myself.  A number of companies saw everyone in America, and they wanted Jeff Knapp to be our face and our voice.  So, I lost all that, Bruce.  I pray for grace.  I try to have grace.  That’s where my Robin comes in.  She slept in a chair beside me for two weeks in the hospital.  Then, for seven weeks she had to stay home from her job to take care of me at home.  That’s how dedicated she is and how lucky I am.  Robin and I are very happy.  I did do well when I was working, so I don’t have the anxiety of feeding a family.  We travel, we do our favorite sporting events.  I love to go to the world’s top art museums.  At the end of the day, we are pretty darned happy.  We are really trying to enjoy life.  This is about a nine-year fight I had.  And there have been other problems.  It just destroys your thyroid gland, which controls so much.  I lost about nine months trying to get the thyroid medicine correct.  That was a very tough time.  I was walking, began to see double, then quadruple, then it became kaleidoscope.  Then my legs went.  I was having a stroke.  That was Thanksgiving 2022.  Thankfully, I was close to home, I live in a doorman building and he saw me wobbling and called for an ambulance.  I was taken to a hospital, where they said I had a TIA, which means no lasting damage.  My Jeopardy prowess is still as good, so that’s good, but the TIA was because of all the radiation.

BM: Correct me if I am wrong, Jeff, but it sounds like overall, your health is about as good as it can be.  Is that fair to say?

JK: I think it is fair to say, and the surgeons tell me that because I was in such marvelous shape that I came through better than most.  I don’t drink.  I can’t drink now.  I haven’t been much of a drinker since 2005, so that helped me, too.  I tried a martini once and it burned my throat like lighter fluid.  I am back to exercising. and our next race will be at the Amsterdam Marathon and the Philadelphia Half Marathon after that, we love that race.  We are members of the various art museums in Philadelphia.  I would say for what I have been through, I am doing pretty darn well. 

BM: That is great to hear and a great story that we have heard from you, Jeff.  We want to thank you for being on Cancer Interviews and spreading a story that certainly had its daunting moments, its daunting junctures, but it looks like you have come out of this as well as you possibly could.  This is a story that can be informative as well as inspirational for those listening to it.  Jeff, we want to thank you for being with us on the Cancer Interviews podcast.

JK: Before I go, I have this word of advice.  I say this as one who has run over 70 marathons.  When I was going through my cancer, I called on that again and again.  And that mindset is not to think too far down the road.  Don’t think, “I have run six miles, I have 50 to go,” because that will overwhelm you.  And for all of your listeners, I would like to tell them just one thing that helped me: Stay in the moment.  Think about what you need now.  Do you need a massage?  Do you need water?  Please keep that in mind, it will help you.

BM: Jeff Knapp.  New York City.  Thanks so much for being with us, and we want to remind you when we wrap up that if you or a loved one have been diagnosed with cancer, you are not alone.  There are sources of information and inspiration just like Jeff who can be of tremendous help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Cancer Interviews: www.cancerinterviews.com

SHOW NOTES

Jeff Knapp twice survived a form of tongue cancer.  His journey was arduous and multi-faceted.  It included radiation, chemotherapy, his jaw being cut in half and the removal of part of his tongue, ending his career as an actor.  But Jeff’s life is as full as can be, including travel and marathon running with his wife, Robin.

Additional Resources:

Cancer Interviews: www.cancerinterviews.com

Time Stamps:

02:27 Jeff noticed a lump on his throat when he was shaving.

04:30 A tumor in his throat was detected by a doctor.

05:40 Was originally diagnosed with deadly Adenoid Cystic Carcinoma.

07:23 Learned he was misdiagnosed.

08:04 Dealing with chemotherapy and radiation.

13:40 After Jeff’s initial diagnosis of tongue cancer, five years later, the cancer returned.

17:08 Learned a tumor on his tongue had to be removed.

23:50 Jeff addresses the sudden inability to work at his chosen profession.

29:02 Says his health is as good as it can be.

31:07 Jeff’s advice to those diagnosed with cancer.

KEYWORDS (tags):

adenoid cystic carcinoma

cisplatin

squamos cell carcinoma

mandibulotomy

right modified neck dissection

tracheotomy

radiation treatment

chemotherapy

atrial fibrillation

peg feeding tube