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When I was still in active treatment for stage IV squamous cell carcinoma of the tongue, a type of?oral cancer,?I was so focused on staying alive that I couldn¡¯t think too far into the future. 

But after five years of being cancer-free, I finally transitioned to survivorship. That meant I only needed to come back to MD Anderson once a year for check-ups. It also meant I¡¯d meet with a nurse or a physician assistant instead of a doctor. And finally, it meant I could start focusing on things related more to my quality of life than my survival. 

Still, before my first survivorship visit in November 2022, I remember thinking, ¡°Do I really need to go to this thing?¡± Now, I know that the answer is ¡°YES!¡± Because my case manager offered solutions to problems I didn¡¯t even know I had. And, he is helping me prevent future complications that I never realized were potential issues.  

Here are five of my biggest a-ha moments since entering survivorship. 

Small adjustment to swallowing exercise enabled me to gulp again

Swallowing was really hard for a long time after I finished my treatments. It took me almost a year to pass the swallowing test that allowed me to stop receiving all my nourishment through a feeding tube. 

Even then, eating or drinking anything was a very slow process. I could only take one small bite of food or sip of liquid at a time, then chew or swallow it. And sometimes, when you¡¯re really hot and thirsty, you just want to chug down a cold drink. If I¡¯d done that back then, though, I would¡¯ve choked and spit it right back up.  

It wasn¡¯t until physician assistant Shawn Terry showed me a slightly different approach to one of my swallowing exercises that I learned this ability might not be out of my reach forever. And within three weeks of making the adjustment he suggested, I was gulping down water in a way that I hadn¡¯t been able to in five years. I was so excited that I called my family over to watch me! 

Minor tweak to mouthwash formula significantly reduced my ¡®salty days¡¯

Until my cancer diagnosis, I¡¯d never had a single cavity. But since finishing oral cancer treatment, I¡¯ve had at least four. Part of that is due to radiation therapy and part of it is due to changes in my saliva. 

I get a really dramatic dry mouth now. And sometimes, my saliva is thick and much more acidic than normal. I call those my ¡°salty days¡± because they make everything I eat or drink taste like salt ¡ª even milk and water. It completely kills my appetite. 

To neutralize the acid, Shawn suggested that I increase the ratio of baking soda to salt in the mouthwash I already use several times a day to keep my mouth moist. It worked! Now, instead of enduring that awful salty taste for four days every three months, it¡¯s gone by the next day. The relief is not immediate, but it¡¯s still a huge improvement. 

Clear, fitted teeth-aligning system may help me preserve my smile 

Another thing I learned from Shawn was that while I couldn¡¯t use one of those clear, fitted teeth-aligning systems to fix anything that was already crooked after treatment, I could use it to prevent my teeth from getting any worse. 

That turned out to be useful information since I had four lower teeth pulled during my surgery. They¡¯d been a little crowded to begin with, so I¡¯d thought those remaining would naturally just kind of space themselves out. They ended up doing the exact opposite.  

All of my teeth have shifted now in a way that makes my smile less aesthetically pleasing. But it doesn¡¯t bother me too much. It¡¯s not a big deal, compared to the alternative. Still, I¡¯m glad to have an option to preserve the smile that I have now. 

Posture-correcting device is helping prevent future problems 

The scarring in my neck tends to make me lean forward a lot. That will only get worse as I get older. I didn¡¯t want to develop a hunchback, so Shawn suggested a simple posture corrector that I could buy online for about $15.  

I put it on, tightened the straps, and started wearing it for about an hour every night. I¡¯ve only been using that device since Christmas, and it¡¯s already helping me hold my head up straighter. 

It turns out that¡¯s pretty important. Scar tissue can harden and thicken over time. If that happens, it could pinch or squeeze my carotid artery, causing serious circulation problems. That¡¯s why one of the first things Shawn did as my case manager was to order an ultrasound of my neck to establish a baseline. I hadn¡¯t even thought of that. But Shawn did. 

Simple massage trick resolved my painful oral ¡®charley horses¡¯

Shawn also helped me with the terrible pain I experienced when I yawned really hard. I was driving the first time it happened. It was so bad that I had to pull over. I thought I was going to die. It was like having a charley horse in the bottom of my mouth. 

Shawn explained that the pain was caused by a nerve spasm due to surgery and radiation. The floor of my mouth and tongue were rebuilt using a muscle from my arm, and when it spasms, it twists so hard that the bottom of it pops down and I can actually feel it under my chin. 

Shawn taught me how to make it stop by massaging the area for a few seconds and then forcing a swallow. Before that, it would take several painful minutes for the nerve to finally relax. Now, I know exactly where to press to make it stop, and the muscle pops right back into place.  

Lesson learned: Simple solutions can yield big payoffs

All of these things might seem really minor. But they don¡¯t feel minor when they¡¯re happening to you. And collectively, having such small tweaks result in such huge quality of life improvements is a really big deal. It makes me more grateful than ever for MD Anderson. 

It¡¯s so reassuring to know that even now that I¡¯ve transitioned to survivorship, I still have people at MD Anderson who care about me and know what they¡¯re talking about. Even when they don¡¯t have the answers to my questions, I know I can trust them to find out and not lead me down the wrong path. I know they care. 

MD Anderson has already saved my life once. Nobody knows my mouth better. I appreciate that they¡¯re still trying to help me live well. And, they¡¯re just a phone call or a MyChart message away when I¡¯m not. 

Until my first survivorship appointment, I¡¯d never even thought about the concept of ¡°after-care¡± as something I should want. I didn¡¯t know what that meant or what it would look like. But it¡¯s wonderful to know that my care didn¡¯t stop just because my cancer did.

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