Jose’s Cancer Journey

Jose // 30 Stories Campaign™ // Oral Cancer Awareness

In the spring of 2022, I received my diagnosis. The doctors came into the room and I knew something was wrong. I didn’t think it was cancer, I thought it was some sort of infection. I bit my tongue—and even a week later the wound wouldn’t close. 

I went to the dentist who referred me to get a biopsy. The physician who performed my biopsy referred me to an ear, nose and throat (ENT) specialist. It was my birthday when I heard the news that I had tongue cancer—I will remember that birthday forever.

Life throws you curveballs and you have to swing. You can’t just sit there.

Truthfully, bad news happens and you just can’t get around it. You have to work with it. I often say, life throws you curveballs and you have to swing. You can’t just sit there. Regardless of whether you think you will strike out or not, you have to swing at that ball. Just don’t give up. 

It won’t be easy, I’ll tell you that, but at the same time the pain lets you know that you’re alive. That’s how I saw it. I went through a lot of pain, but I’d rather deal with this than not be there for my kids or my wife. That’s the pain that I wouldn’t be able to deal with. 

At the end of March, I went in for surgery. I received three operations over three days. They first took a skin graft from my left calf to reconstruct my tongue, but it just wouldn’t take. The next day, my surgeon reconstructed the graft to improve its function—he wanted to make sure all the vessels and nerves worked properly. Again, it failed. They tried a third time, this time taking skin from my arm. Lo and behold, the third time was the charm.

I realized that my situation could have gone even more awry. The gratitude I felt from this realization carried me…

Right after the surgery, I got my energy back very quickly. But then came the radiation. A few weeks later, I began a six-week regimen of radiation therapy. I went each day, Monday through Friday for a total of 33 sessions. I drove myself there and back everyday—even though I shouldn’t have—but by the graces of God, I made it there and back all in one piece. 

During my radiation treatment, I would see and talk to other patients who were worse off than me, with cancers more aggressive than mine. That really put things into perspective. I realized that my situation could have gone even more awry. The gratitude I felt from this realization carried me throughout the rest of my treatment.

About four weeks into my radiation, I ended up in the ER where they kept me for about three nights. I had severe burns from the radiation to my oral cavity. I don’t know what degree they classified the burns as, but at one point I couldn’t eat anything—I couldn’t even drink water.

It felt like a sunburn had scorched my mouth or that I had gargled acid. Everything burned. The pain felt unbearable. I desperately needed cold water to soothe my dry mouth from the radiation and to also cool down the burn but that sometimes wouldn’t help either. My energy level was also down—I felt incredibly lethargic and tired all the time. I didn’t want to do anything and I wouldn’t eat anything. As a result, I had no energy.

I was prescribed pain medications… [but] I didn’t want to be under the influence of anything around my children.

So during those three nights, the hospital staff gave me lidocaine to numb my mouth to help me eat. They put me on soft foods like jello and pudding. A lot of Ensure too—which I can’t stand anymore.

After my stay in the hospital, I was prescribed pain medications. I’m the type of person who doesn’t like to take things, like Oxycodone. They make me nauseous, and druggy. I have kids at home and during the few times I did have to take the medicine, I felt nasty and terrible. So truthfully, I just dealt with the pain. 

My radiation specialist encouraged me to come back so we could finish my treatment. He said “don’t waste anymore time.” He was actually surprised I wasn’t taking my pain medication as much as I should have. But to be honest, I have a high tolerance for pain, and they weren’t really doing anything for me. I insisted on abstaining from any unnecessary medications. 

He even offered to bump up the dosage. But I told him, I didn’t want that. I didn’t want to risk getting addicted to the drugs. I would rather deal with the pain than take something stronger. At the end of the day, I didn’t want to be under the influence of anything around my children. 

After I finished my radiation, it took me a couple of months to get back to normal. My glands and throat remained extremely dry from the treatment, making nights hard for me to go to sleep. I wasn’t in pain. I just felt extremely restless—tired all the time.

Before, I couldn’t talk… for longer than two minutes without getting a sip of water, but now I can go five, ten, even fifteen minutes.

Working nights also contributed to my exhaustion as it disrupted my sleep schedule. When I would come back home from work, during the day I couldn’t really sleep. As a consequence of trying to remedy my intense dry mouth, I would constantly have to get up from drinking water to urinate, which also kept interfering with my sleep. It was mainly restlessness and exhaustion, not pain, that I had to deal with for about six months after my radiation. 

I tried everything. I moistened the air with humidifiers in the room. I kept a bottle of water next to me, I even tried lozenges and special mouthwash to soothe my dry mouth. Nothing helped. I only got a few minutes of temporary relief. But after those six months, I felt my saliva coming back. And every time I came back in for follow ups, I would get better and better. Before, I couldn’t talk to anyone for longer than two minutes without getting a sip of water, but now I can go five, ten, even fifteen minutes.

Compared to how I felt after the radiation, I felt pretty good after my surgery. I didn’t even need to do the physical therapy after my operation. The worst part of it all really was the radiation, but it was only a small time frame. It wasn’t really that long, and right after I started feeling like myself again.

I kept trying to get my weight back up. Obviously, I couldn’t eat many of the things I used to. Salt was intense. Ketchup was intense. Everything was intense.

…it takes me a lot longer to finish my meals… I have to take smaller bites, I consciously chew more. I want to make sure I don’t bite my tongue…

I could only have bland food all the time. And it was just healthy stuff like salads with no dressing. Maybe with a little bit of oil just to help me take it down, because of my dry mouth. I’d say the dry mouth is still an ongoing thing that I have from the radiation. But everything else, like my strength, is back. I go to the gym, I’m eating more—although no spicy foods like I want to. 

Even though it takes me a lot longer to finish my meals, because I have to take smaller bites, I consciously chew more. I want to make sure I don’t bite my tongue since my tongue mobility is not the same compared to before. Occasionally, I still find myself biting my tongue or my lip—but I know that’s just because my tongue isn’t 100% like it used to be.

I understood that after my treatment, I would have to change my lifestyle, but I knew I would learn how to cope with it. As far as the dry mouth, I can’t really change that. I lost weight, because the surgery and radiation made it difficult to eat. I decided to keep my weight down, because I’m at my ideal weight now. But overall, I’ve made adjustments to maintain my lifestyle in the same way I did before. I couldn’t let the changes from my cancer keep me down. Overall, I’m getting stronger, and I’m doing great.

My whole experience with cancer has humbled me. In my appointments, especially during radiation, I would meet a wide range of individuals, and I would even see children waiting to get radiated. That made me realize how indiscriminately cancer hits.

The journey with cancer can get bad… but you have to keep pushing.

Sometimes you think to yourself that maybe getting cancer is an act of God. Maybe He’s punishing you for something you did in the past. But that cannot be the case because it happens to innocent babies. That realization right there humbled me more than anything—not because I got cancer, but because I now know cancer can happen to anyone. 

At this point in my treatment, I see the doctor every six months. I don’t have any active symptoms from the radiation or from the surgery. My care team gives me a lot of positive feedback: “you look good, keep doing what you’re doing because what you’re doing, obviously is working.” Their words give me hope that I’m getting better. When I get my scans and the doctors look at them and say “everything is great,” they give me another six months—that’s basically how I see it. 

Hopefully if my next checkup goes well, they’ll stretch it to yearly check ups and for three more years thereafter, I’ll be done. The journey with cancer can get bad, I’m not gonna say it won’t, but you have to keep pushing. You can’t give up.