After surgery I drooled a lot. I carried around a cup and a paper towel everywhere I went to try to control it. I was struggling to get the saliva from the front of my mouth, to the back of my mouth to swallow it. I also struggled to spit saliva out of my mouth. It wasn’t just saliva, I struggled with food as well. I would swallow my food and there would still be food in the floor of my mouth that I couldn’t move.

Here is a picture of me getting my first Modified Barium Swallow Study. For this test, the Speech Language Pathologist (SLP) feeds you various consistencies of food and drinks mixed with barium. As you swallow the “live x-ray” shows the inside of your mouth and throat and you can actually see the food because of the barium. This allows the SLP to see if you are safe to swallow food and drinks and if not you may need a modified diet. According to my swallow study, I was safe to swallow food, meaning I wasn’t at risk for aspiration (food entering my airway instead of my esophagus.) Although I was safe to swallow any food that did not mean I was physically able to swallow all consistencies of food. I had to learn to how to eat all over again. Even three years later, there are still many things I can’t eat and I have to modify my diet every day.

This video will prepare you for what to expect if you need to get a Modified Barium Swallow Study.

After surgery I still produced plenty of saliva and my biggest hurdle was learning how to chew my food and get it to the back of my mouth to swallow. Food would stick to my teeth and I could no longer use my tongue to remove it. I had to rely on using my finger to sweep the food out. I also used toothettes to do this. I was not a big fan of putting my fingers in my mouth. I also discovered that I can swish water around in my mouth to free some of the food from the roof of my mouth and teeth. Sometimes food gets trapped in a pocket under where my tongue tip is tethered and swishing around water is the only way I can get it out.

Swishing water doesn’t sound like a difficult task but I had to re-learn how to do this and how to spit it out like when I’m brushing my teeth. So I practiced at home. I brushed my teeth and cleaned them with a Waterpik after every meal. During this time I would practice swishing water around in my mouth and moving it to different areas inside my cheeks and mouth while maintaining lip closure. I also practiced spitting the water out into the sink. This really helped to strengthen the muscles and re-train them to be functional.

Another hurdle that I continue to struggle with is swallowing pills. Swallowing a pill is a very coordinated series of movements. Even before my surgery I struggled to swallow pills. Now when I place a pill in my mouth it either gets lost and floats around and I can’t locate it with my tongue, or the pill won’t cross the base of my tongue to swallow. When I can’t swallow a pill, it starts to dissolve and becomes bitter. I also start to gag as I try over and over to place the pill in the very back of my mouth to try to swallow. For now I have accepted that I can’t swallow pills. Unfortunately, not all medications can be crushed or come in liquid form. I have actually had a lot of negative experiences trying to explain to doctors that I cannot swallow pills. Sometimes they don’t believe me and they have made some rude comments. I try to use this moment as a teaching opportunity to explain why I can’t swallow pills from a speech therapist’s point of view. Because I can’t swallow pills, getting prescription medication has been very tricky and expensive. I attempted to pick up a liquid antibiotic once and the pharmacist said it was going to cost $500, after insurance! Needless to say I did without the medication. I have learned to log into my insurance app and look up the cost of the medications before leaving the doctor’s office so there are no more surprises at the pharmacy. I try to work with my doctor to find a medication that can be crushed or comes in liquid form first, then we work together to find one that doesn’t cost a fortune. Not all doctors are this patient.

I buy a lot of children’s over the counter liquid medications such as Ibuprofen, Zytrec, and cough medicine. This is expensive since I have to take adult doses. Sometimes adult medications come in liquid form such as Pepto-Bismol, Imodium AD, Emetrol, and Mucinex.

Another unexpected thing that comes up with medical professionals happens during dental appointments. I have to ask that they don’t squirt water in my mouth while I am laid back because it will choke me. I have to be sitting upright to rinse my mouth out because the base of my tongue is weak and I don’t make good closure to protect my airway when my body is lying flat in the chair. Everyone at the dental office wants to see inside my mouth. Again, I use this as a teaching opportunity and I explain what happened and I let them know what their responsibility is as dental professionals conducting oral cancer screenings. I also remind them that there is no age limit on cancer because I was told I was too young and didn’t fit the demographic. Because of this my treatment was delayed and more invasive.

I ate a lot of milkshakes and protein shakes after surgery. They were just easier for me to eat. But I never gave up on food. You have to try things, fail, give it time, and keep trying them again. We find a lot of comfort in food and it’s also a very social activity. I was determined to find a way to eat my favorite foods again. Not being able to eat normally caused me a lot of anxiety because I couldn’t enjoy and participate in things like holiday meals, potlucks at work, going to restaurants with friends, etc… without stressing about what I would be able to eat and how I could modify it. I’ve gotten a lot better at this with time but it still stresses me out.

My biggest barrier today is dry mouth from radiation. It prevents me from being able to swallow food without some kind of modification. Typically I can eat just about anything as long as I have a sauce or dip to act as my saliva. I have had no luck with artificial saliva. I have found that dairy products mimic saliva very well. At home I keep sour cream, cheese sauces, gravy, tomato sauce, and others to eat with meals. It’s a little trickier at restaurants. I can only order items that come covered in sauce or gravy or I can order additional sides of sauces. It is not uncommon for me to order 4 sides of sour cream. Each bite needs to be dipped in a sauce so that I can swallow it. When I run out of sauce, I have to stop eating. If I attempt to eat my food without sauce, I will start coughing and choking. My nickname has become the Sauce Boss when I order at restaurants with family and friends because I order so many sides of sauce.

I can’t eat just any sauce. Some things are too acidic and burn my tongue and mouth. Ketchup, tartar sauce, and cocktail sauce to name a few, are impossible for me to eat without modifications. I have found that I can add sour cream to ketchup and tartar sauce to tone them down and keep them from burning my tongue. I know it sounds gross but if I don’t modify my food I have to do without a lot, which can be very frustrating. Experimenting with different ways to modify foods, while still tasting good, has been an interesting experience. There are definitely wins and fails when doing this. I prefer to eat foods that don’t need to be modified. It makes me feel normal. But even things like macaroni and cheese can turn into something difficult to swallow if it’s dry and sticky. I just have to be conscious about how creamy to make things like this so that I can swallow it safely without coughing and choking.

At restaurants I like to talk to my friends so that impacts what I order to eat. If I order something that requires a lot of chewing like bread and pizza, it gets stuck in my teeth and takes a long time to chew and swallow. I also can’t order pizza without a side of tomato or cheese sauce to dip it in. I like to order soft things at restaurants like hummus, pasta, or soup so that I can swallow quickly and participate in conversations. When I was learning how to eat again, it was very stressful when someone would ask me a question while I was eating because I couldn’t swallow in time to respond before the conversation moved on. I could talk or I could eat, but I couldn’t do both at the same time. I finally started to hold up my index finger indicating that I needed more time. This was also stressful because now everyone was watching me and waiting for me to swallow. Taking longer to eat also means that my food gets cold before I can finish it, making it unappetizing. I try not to speed up when I am eating though because it puts me at a higher risk to choke on my food. I usually eat about half of my meal at restaurants and take the rest home or I order an appetizer as my meal since the portion is smaller.

My saliva production also impacted what I could drink. I primarily drink water. I still can’t drink soda, wine, most alcoholic drinks, and most juices. They burn my mouth. I usually describe it as feeling like a “mouthful of bees.” I have discovered that I can drink most beer and some alcoholic beverages with a milk base, coffee with creamer, and some diluted juices. I don’t drink many alcoholic drinks but drinking anything is a very social activity and it was 2 years before I realized that I could drink beer again after surgery. It just made me feel like a normal adult to enjoy a drink with a friend or with a meal from time to time.

My speech was also impaired of course. Before my surgery I was worried about not being able to talk and communicate my needs. Being a Speech Language Pathologist the solution was simple, I needed a voice output device. I downloaded the Talk for Me, free app, onto my iPad and I used it to type out messages and pressed “say it” to play the message for others to hear. Most of the time I didn’t feel like saying much but I was able to type and save questions and comments in the app so that I could play them for my doctors and nurses when they came in. It was very frustrating when I would attempt to talk and the listener would just nod their head and agree with everything that I said. At one point I said to a nurse, “you have no idea what I’m saying do you?” She just kept nodding yes. The voice output app helped in these situations so that I could make sure that my speech was understood. I know that people think it’s rude to ask someone to repeat something, especially if you have to ask more than once, but I would rather know that you didn’t understand me than think that you did. If I put forth the effort to speak, it may have been something important. If I know that you don’t understand me I will type it or write it down for you. It is more rude to pretend like you understand when you don’t. I only needed to use this app for a few days before I was comfortable that everyone understood the majority of what I said.

Here is a video of my speech 17 days after my surgery. Everyone was super impressed with my speech but it drove me crazy to have a speech impairment. You can also see that I drool in this video and use a paper towel to wipe it away.

To combat the drool I practiced pressing/sucking my tongue to the roof of my mouth and sucking my saliva to the back of my mouth so that I could swallow it. I didn’t have to tolerate the drooling for very long. Radiation treatments damaged my saliva glands and now I suffer from dry mouth. I still produce saliva but it’s much less and comes back much slower than before. Dry mouth causes a lot more problems than drooling did. Given a choice, I’d rather drool than have dry mouth.

It was difficult to practice any swallowing and speech exercises during radiation treatment. I was in a lot of pain and struggled to swallow anything including water. It is important to try no matter how much it hurts though. It’s true what they say, if you don’t use it, you lose it. My swallow weakened during my radiation treatment while I was dependent on my feeding tube. I had to work hard to build up my muscle strength once I was able to tolerate swallowing again.

Since the traditional swallowing exercises were difficult for me to do I came up with some different things to do to learn how to use my new tongue and to strengthen it.

• Tongue push-ups: I practiced pressing my tongue to the roof of my mouth over and over like push-ups.
• Tongue to teeth: I practiced stretching my tongue to each of my teeth, even those I couldn’t reach. I would also practice licking the back of my teeth to practice getting food out from between my teeth.
• Tongue slides: I practiced touching my tongue to the roof of my mouth and sliding it back as far as I could to mimic moving food from the front of my mouth to the back of my mouth in preparation for swallowing.
• Drink lots of water: There are many benefits to this. Swallowing is no longer involuntary for me. I have to think about it. The more I practiced, the better I got. Water is great to practice with all day, every day. It also keeps you hydrated, thins your saliva, and helps to keep your oral tissue wet and healthy. Water helps to wash away food from in between your teeth too. I can also take a drink of water to moisten most foods that I’m struggling to swallow. Overall, drink plenty of water. I carry a bottle with me everywhere I go.

This second video was taken 5 months after my surgery. It had only been 2 months since my treatments ended so my voice was still dry and cracked and you can still see the physical effects from the Erbitux infusions. My eyebrows and eyelashes were long and dark and my skin was still healing from the acne like rash. My skin had healed from the radiation burns but I was still struggling with lymphedema in my face as you can see, my face was puffy.

In this video my speech had improved but it still bothered me. I had been back to work at this point for about a month and I was still using a feeding tube. It was difficult being back to work both physically and mentally. My tongue would get tired from talking and the base of my tongue would get sore from the constant pulling as I spoke.

Tube feeds were uncomfortable and made me want to vomit. The tube itself was also painful. The area around it was raw and sore. I hated the feeding tube so my doctor made a deal with me that if I could drink at least 4 Ensure Plus bottles per day for 2 weeks that they would agree to take my feeding tube out. The only way I could tolerate swallowing the Ensure was to numb my mouth with lidocaine ointment first and drink fast. Without the lidocane my mouth would burn when I ate or drank anything.

Here is a picture of my Percutaneous Endoscopic Gastronomy (PEG) feeding tube. This tube went straight into my stomach and I could put fluids such as high calorie meal replacement drinks, water, Gatorade, etc…into it. I used the gravity feeding bag system. I emptied the can of liquid food into the feeding bag and hung it from a pole, then I connected the tube to the one in my stomach and let gravity push the liquid from the bag into my tube and stomach. I didn’t feel satisfied after a tube feed like how you feel after eating a nice meal. It just felt like I drank some milk and it took the edge off of the hunger.

Something they didn’t tell me was that although you are asleep when your feeding tube is placed, you are awake when they remove it. They don’t numb anything, they just pull it out, and it hurt. There are no stitches either. It’s just a hole with a bandage over it. I had an irrational fear that whatever I ate was going to come out of the hole, but my doctor assured me that wouldn’t happen. Apparently, as soon as they pull the tube out the hole starts to close up. To clarify, she was right. Food never came out of this hole. Crisis averted.

Here is a picture taken after they removed my feeding tube that shows the tube entry site. You can also see more of the Erbitux rash here on my stomach.

When you get a feeding tube, make sure someone orders cans of food for you and feeding bags. When I made the decision to get a feeding tube I hadn’t eaten in 4 days because it was too painful during radiation. As soon as the tube is placed you are able to eat with it but we had no cans of food because they weren’t ordered until after my surgery. Thankfully, the dietician was able to find a few packages of cans for me until mine arrived.