NOVEMBER 2008 - Revisited
After a LONG recuperation period, it was time to prepare for my next check up at MD Anderson. So far I my diet consists of 30% real food. I'm tired of soups, puddings, and protein laced milkshakes. I have managed to begin eating pasta, tuna fish with gobs of mayo, and some chicken diced up, but not without great pain. It's like my tongue is exhausted from all the movement and afterwards begins to throb.
I'm learning that I can get some real food down with modifications. Ground beef is a nightmare. It breaks down into little pieces and ends up stuck behind my teeth where my tongue can't get at it to move it. But, if I add mashed potatoes I can manage the beef better. I'm trying so hard not to get used to using my fingers to manipulate my food. I can move food by sloshing it around with water, or sucking motions, mixing foods that compliment my need, or with the use of a fork to place it.
Often when I chew, the food wants to come to the front of my mouth. If I'm not careful, it will just fall out. I'm learning that if I apply pressure to my lower lip this won't happen. It seems to only happen with bulkier foods. I believe this is due to the doctors cutting my mouth open on either side for easier access. My lower lip has never fully recovered. It's larger than it was and doesn't feel as strong.
Even though the tongue has been rebuilt, it is shorter and less mobile. I'm not sure if all tongue cancer patients have this problem. I also had the left side floor of my mouth redone too since the cancer infiltrated it. I'm really amazed at how much that damn tongue used to do without me ever realizing it!
Throughout October and November I experimented with many foods. I was surprised to find I could eat salad easier if I shredded the lettuce instead of dicing it. Tomatoes, onions, olives, topped with crab meat made it worth eating. If I removed the skin from the cucumber and diced it up, I could also manage that. Of course adding 1000 calories of ranch dressing also made it even easier. Some pastas, the wider variety, seem easy to eat since they are slippery and I can move them around with a sucking motion. With the addition of a sauce like Alfredo, it becomes even easier. With one exception...spaghetti noodles
Because the salivary glands took a hit during radiation, breads are a big problem for me. They act like a sponge, sucking up all the moisture and leaving me with paste. Some very soft breads like Wonder Bread are easier if I use mayo or a dressing. Olive oil with pesto is VERY helpful, but some foods seem like they are just too much trouble, leaving my mouth exhausted as if my tongue just ran a marathon!
Oddly enough, grilled cheese isn't too difficult as long as it is made with Wonder Bread and LOTS of butter and I mean almost 1/2 a stick. At this point I'm not worried about calories, but clogged arteries could be a issue soon!
I am preparing to see my doctors again in a few weeks to address some scar tissue (scar band) and have my 6 month check up to see if the cancer has returned. The scar band is holding my tongue in place and restricting its movement. It acts like a rubber band. I want the doctor to look and see if it can be cut or modified for greater movement.
Thanksgiving was quiet and I was able to eat some turkey with LOTS of gravy and mashed potatoes. I hear my heart pounding now! It's so worth being able to eat some real foods again, even if they have to be modified for consumption.
By the end of November I was only relying on my feeding tube for 50% of my nutrition. I want off that tube so bad!!!! I just want to sit down and feel like I can have a real meal again and enjoy it rather than it requiring so much work and concentration. I have to be so careful when eating that I don't hold much of a conversation. I can aspirate my food and get it caught in my wind pipe very easily. Choking to death is not an option!!!!
As much as I'm so excited about beginning to eat real food again, it is so tiring and time consuming. I end up with great jaw and tongue pain. My portions are 1/3 what they should be and it takes me 40 minutes to complete a meal. Because I require so much liquid to wash down my food, I'm sure the 20 to 30 ounces of water has something to do with me filling up so fast.
Someday I want to go out and eat in public again without being embarrassed. For now, the battle continues as I prepare to see my doctors next week.
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