SIGNS & LATE DIAGNOSIS:
“My dentist recommended I see an ENT for my unusually dry throat and difficulty swallowing, as if pieces of food were getting caught in my throat.He didn’t see anything that caused the discomfort. After a while, I noticed a cyst on my right tonsil, yet I had a tonsillectomy at age 10. The ENT said the tonsil area looked fluid-filled and of no concern. He could remove it if it bothered me. I wanted it gone! The pathology was negative. I knew something was still off. My GP was seriously concerned. I returned to the ENT and this time he pressed his finger under my jaw and at the same time pressed on my tongue. He felt what he thought was a salivary gland stone. A CT scan indicated late-stage base of tongue cancer. The ENT said that in all his years practicing medicine, he has never had something like this go under the radar for so long. This is my story.”
“I didn’t eat or drink by mouth for almost 3 months. I would look at everybody’s dinner plate and ask if I could smell their food. They thought I was torturing myself, but I found it satisfying.
I went to a speech/swallow therapist who had me lean back and take small sips of water. My esophagus had shrunk dramatically from radiation and the muscle was immobile so I had to rely on gravity to swallow. i avoid drinking on airplanes because the seat won’t lean back enough to avoid aspirating.
After failing the swallow test 2 more times, they recommended a series of throat-stretch surgeries. That did wonders! When I started, my esophagus was about 6ml and now I’m up to 20ml.
I was assigned a nutritionist to help maintain my weight and stay healthy. When I was able to swallow liquids by mouth, I tried the supplement Jevity – yuck! Boost Plus tasted much better, it had a surprising amount of nutrition in 8oz.
I used to love steak, but now, I can’t really eat solid foods. I will try a fingernail-size bite here and there, washing it down with a pitcher of room-temperature water that sits beside me at every meal. Fish and steamed veggies pushes down easily. Another tongue cancer survivor told me, “If it floats, it will push down with water.” I tell my story on YouTube.
Now, I’m able to swallow liquids sitting upright. I eat watery oatmeal and coffee for breakfast or one scrambled egg with cheese and crushed bacon or sausage. I used to love hot and spicy foods, but no longer. I have 6 bottles of Boost Plus (360 calories each bottle) a day to get in my 2160 calories. I make a mess with sushi, but I enjoy the Asian flavors with the soy sauce, spicy mayo and wasabi. I can handle those spices now, but I don’t order hot wings with suicide sauce anymore.
Tonight, I pushed down a BBQ sandwich in about 90 minutes, plus 2 Boost drinks and a pitcher of water. You would think that I would have hunger pains all day long without having much solid food but I don’t. And, I taste everything!”
“I take a pill called Evozac to help saliva production. I’m not sure how well it works because I have nothing to compare it to.”
“Before my throat stretches I would put my meds in my feeding tube. After it was removed, I would crush pills and mix them with water. One day on the road, I decided to go for it and take one pill by mouth. I got my friend to get his phone ready for 911 and just pushed it down with some water. No problem! One more obstacle defeated!”
DENTAL COMPLICATIONS & HBOT:
“The radiation treatments not only killed the cancer but also caused a breakdown of healthy bone and tissue. My jaw plate broke and four bottom front teeth had to be extracted. I had a total of 40 hyperbaric oxygen dives, 30 before the extraction and 10 after my jaw surgery.
The treatment is 2 hours long, 5 days a week for 6 weeks. Inside the clear chamber., I was under 2 1/2 atmospheric depths of pressure where I would breathe a heavy dose of oxygen. This treatment generates more oxygen to the blood and more blood flow to the area of the necrotic jaw bone to promote healing.”
LIFE AS AN 11-YEAR SURVIVOR:
“In the first few years, I only knew three other people who have had oral cancer. None of us even heard of the disease. Now, I hear many stories of much younger people getting this disease. However, not much has changed as far as early diagnosis.
Over the years, the shape of the reconstructed part of my tongue has changed which has caused my teeth to shift resulting in TMJ. So I continue to adapt to my circumstances.
I use RX fluoride every night before bed and I couldn’t live without a NutriBullet to puree my food. I keep a small spray bottle of water and a cup of water beside the bed to moisten my dry mouth several times a night.
I get winded easily and I look like I aged 20 years. My speech is hard to understand, although it comes in handy for telemarketers. I accept my new normal, and thankful I’m still here to enjoy my beautiful family, my friends, and my passion for music. Watch a clip of me drumming and more of my story on YouTube.”