Nick’s Cancer Journey

30 Stories in 30 Days™ // April 2023

So I’ll try to tell this with a little humor, because it’s not such a pleasant story. But thankfully, this story has a happy ending.

My wife and I were skiing and enjoying our favorite resort in Colorado—Beaver Creek. I was sitting on the back deck one morning, and I told my wife, “Boy, my allergies are really killing me, look how swollen my glands are!” My wife and I looked at each other strangely, and she said, “Your allergies can’t be killing you. It’s the tundra out here! There is no pollen, only snow.” In hindsight, I think my glands have always been swollen throughout my life, and I never paid attention to it. 

Upon returning home, I started trying to figure out what was wrong with my throat. After the traditional doctor visits, multiple rounds of antibiotics, and no answers as to what was wrong, the doctors did a bunch of tests. Sure enough, I had lymphoma. Treatable lymphoma, but lymphoma all the same. So my first exposure to the cancer world was when I had four chemotherapy treatments eight years ago. I did the treatment, the swelling went down, and it was all over in a month. No big deal. 

Fast forward about a year and a half to my family’s Thanksgiving celebration. I developed a persistent sore throat, which was driving me crazy by the spring, with no relief from prescribed medications. My lymphoma doctor suggested I consult with a throat surgeon, who ordered a CT scan without contrast. The scan was inconclusive, and ultimately the ENT told me that my sore throat was likely due to a speech problem. I thought to myself, “really?” I talk for a living and have never had a speech problem. So we started down this silly path of getting evaluated by a speech pathologist. 

Then came the summer, and after getting back from an anniversary trip with my wife, the back of my jaw near my ear started feeling like it was contracting. Slowly, the movement in my jaw became more and more restricted, and I couldn’t open my mouth all the way. My normal eating habits were limited, and I started to lose weight. 

We finally found a surgeon who had done this procedure thousands of times, and our confidence grew.

We continued to look for other opinions. One doctor suggested I might have epilepsy and put me on anti-epileptic medications. They warned me that vertigo and loss of muscular control are side-effects of the medication, since the goal was to limit inadvertent movement characteristic of epileptic seizures. That made sense to me. But one day, when I stood up in my living room in New Jersey, these side effects caused me to fall straight down, hitting my head and shoulder in the process. I couldn’t get off the floor. My wife picked me up and dragged me to the sofa, at which point we realized I injured my shoulder. I went to the orthopedist, who told me that I tore my rotator cuff in multiple places, and I needed surgery. 

When the orthopedic surgeon got me into the operating room, he tried to intubate me. That’s when I told him I was having trouble opening my mouth. I showed him, and thinking it was just a muscle spasm, he told me that after I go under anesthesia, the muscles will relax, and the tube should go in. Turns out, that didn’t work, so they had to intubate me while I was awake—it was just horrible. The surgeon told me this throat problem was not normal, and I needed to get it checked out. 

So there I was, in the 10th or 11th month of trying to cure my throat, weighing 40 lbs less than I was the year before. At that point, my jaw mobility was so limited that I could only eat by drinking through a straw, causing me to lose significant weight. At a routine checkup for my lymphoma, the nurse looked at my thin physique and was extremely concerned. She encouraged the oncologist to pay attention to my condition. Thankfully, since the cancer surgeons were there that day, he sent me to see one of them. The surgeon I saw—a wonderful woman I credit with more than I can tell you—looked at me, listened, and opened my mouth. After putting one finger into my throat, she said, “There’s a tumor right there. I can’t see it because it’s on the inside, but I can feel it inside your throat.” I was shocked.

The dedication of the nurses who cared for us was unparalleled—they provided a constant source of affirmation and were kind, gentle, and knowledgeable.

I went for a CT scan, with contrast this time, which showed a lemon-sized, flat tumor wrapped around my jaw bone, closing my mouth substantially. The tumor extended to the top of my right tonsil at the base of my tongue. Because the tumor was so close to my facial nerves, which control facial muscle movement, the surgeon couldn’t operate and remove it surgically. Instead, I underwent radiation and chemotherapy to shrink the tumor for 11 weeks—radiation five days a week, chemotherapy on the sixth, and several blood transfusions. 

Because of the side effects of radiation, I lost all feeling in my tongue and right jaw. I never regained the full sensation of taste in my mouth, and because of that, eating became less enjoyable. I never really got hungry or got to the point where my stomach gnawed at me, and I still don’t have that feeling anymore. So to this day, I have to remind myself to eat, or else I’ll just completely forget, and then I’ll feel terrible. 

After chemotherapy and radiation, my jaw started moving again. The oncologists patted themselves on the back for what a wonderful job they did, and I followed up with three or four different doctors at routine visits year after year, always on schedule.

But my story doesn’t end there. Years later, in the place where there should have been nerves and bone, my dentist found a dark spot in the back of my mouth. He told me I needed to be in a hospital immediately. And I looked at him like ‘what are you talking about?’ He told me that the back of my jaw has exposed dead bone, and my gums are deteriorating. I then learned that radiation can cause bone, blood vessels, and nerve endings to die. If the bone is dead, the flesh won’t adhere to it. I sought treatment immediately.

I went to see a surgeon in my area who was honest and forthright, which after such a long journey of misdiagnoses, honesty was all I wanted. I started hyperbaric oxygen treatments and had the dead bone removed. 

Afterwards, I visited my daughter in Colorado to meet our new grandbaby, and my face started swelling up. Little did I know that healing is harder at the high elevations characteristic of Colorado! So I was instructed to go home and heal properly at sea level on antibiotics. More surgeries to remove dead bone, more hyperbaric oxygen. And it still wasn’t healing. 

This is when I learned about reconstructive jaw surgery. My surgeon told me: “Your jawbone will fracture, and it’s going to get much worse… you must have the surgery.” So my wife and I started interviewing surgical teams throughout the country, because we were willing to go anywhere to have this fixed—even outside the country. So we were on a mission, because at this point, we had so many mistakes happen, that we only wanted to go to the very best. 

Ultimately, having a ‘no quit’ mindset, something to look forward to—like the birth of my first grandchild—and a strong support system will get you through this.

We finally found a surgeon who had done this procedure thousands of times, and our confidence grew. We had finally found the right person that would hopefully take care of this once and for all. We were thankful for the surgeon’s team, and they, as well as my wife, did an incredible job of helping us navigate the insurance. If it wasn’t for my wife, honestly I’d still be lost. 

At my first in-person consultation with the surgeon, he showed me the CT images demonstrating the actual damage to my jaw and oral cavity. I’m someone who is comforted by receiving more information, since the fear of the unknown is what haunted me the most. Maybe others don’t feel that way, which I can understand, but that’s how I am. So when I could see the magnitude of what I was going through and visualize what was happening, it made me feel much more comfortable taking the next step—surgery.

The surgery went well, and afterwards, I spent the following two weeks in the ICU. The first month at home was pretty rough. I had a feeding tube and tracheostomy, and trying to come back from that was pretty difficult. 

The only hiccup a few weeks after surgery was that my face swelled like a balloon, and my face was one and a half times bigger than usual! I ended up in the emergency room near my surgeon’s practice on Valentine’s Day. It was a romantic day for my wife, clearly. I went through two 10 day rounds of antibiotics, and now the swelling, while not gone completely, is lower than it has ever been after surgery. About one month after my surgery, I started eating real food again instead of just liquids.

Four months later, I’m still recovering—my lower jaw is still swollen and partially paralyzed. We don’t yet know if the nerve grafts were successful, and I still have a tremendous lack of feeling in my mouth. Despite these things—and my mouth being a little crooked—it’s not noticeable that I had anything done to my face at all. It’s pretty remarkable. I have been plenty functional—working and traveling. So, while I don’t feel like a 100% success yet, I do feel that this part of my journey has been surprisingly successful. 

As crazy as this sounds, a high point in my whole journey was being in the various radiation therapy rooms. The dedication of the nurses who cared for us was unparalleled—they provided a constant source of affirmation and were kind, gentle, and knowledgeable. One of the other greatest sources of comfort were the people going through this with us. The treatment room is the “great leveler” of society, and nobody can ever think the same way about class structure, race, age, after going through something like that. Sharing conversation with people of all walks of life in that treatment room was incredibly inspiring. 

My advice to anyone going through a similar journey is to seek the best care you can find, or can afford, from the get-go, and use multiple sources to verify your situation. Second and third opinions are so important, and you’re allowed to disagree! Many people receive medicine, but don’t participate in it. As the patient, there are things you can do—not just the doctor—to improve your condition. For example, diet, exercise, speech-language pathology, swallowing therapy, and your knowledge level are all in your control. I have an inquisitive mind and am ridiculously addicted to gaining knowledge, so I bought academic books about the type of cancer I had. Learning and trying to understand what I was going through certainly lessened my fear of the unknown and put me more at ease. 

I hope this empowers you to do the same—to seek information and not just take the first answer as truth. Ultimately, having a “no quit” mindset, something to look forward to—like the birth of my first grandchild—and a strong support system will get you through this. I get emotional when thinking about the tremendous support my wife gave me, and I would never be where I am today without her. Ultimately, while the word cancer is scary, don’t assume it’s a death sentence, because nowadays, it’s often not. By the way, I just returned from a ski trip in Colorado, only four months after surgery!

From My Wife, Michelle

To patients going through this journey: Stay around positive people, and keep your chin up. Putting things into perspective helped us persevere through the deepest, darkest times. 

To caregivers: Encouraging your loved one to stay positive can be extremely difficult, so you have to have a good support system yourself. Don’t be afraid to ask for help or compare notes with others going through similar situations. I never joined a support group, but I know they’re out there. Sometimes just talking to people in the waiting room at the doctor’s office inspired me. I had a friend who texted me every day for 7 weeks straight and sent me something funny to laugh at. Little things like that made all the difference in the world. 

Don’t feel guilty about needing a break. You’re allowed to not be okay. For me, I took breaks by distracting myself with other things going on in my family, like planning my daughter’s wedding. Relying on family and friends is essential, and asking them to stay with your loved one for an hour or two so you can go food shopping or get out of the house for a bit can be extremely helpful. 

Lastly, don’t stop thinking about your own health. Caring for a loved one as they go through such an intrusive procedure can not only weigh on your mental health, but also your physical health. Don’t stop going to your doctors appointments and taking care of YOU—it’s the best thing you can do for your loved one going through cancer, your family, and yourself.