Journal entry by Janet Steele —
I’ve been back to work full-time for 2 weeks now. My last lymphedema therapy session is this week. I thought that would be my last appointment until my 3-month surgery follow-up in June. But I was wrong.
I continue to heal, for good and bad— you didn’t know there was a bad side to that, did you? I didn’t anticipate it either.
My taste sensations are coming back little by little. Many herbs are a mystery to me, but I have been using spice jelly beans to refine my palate on the various mints and clove. Thanks, Easter Bunny! Most fruits still a mystery, but I know fresh pineapple. :) I cannot tell the difference between the various flavors of Jose Cuervo margaritas in the single serving bottles. I haven’t tried all of them, yet.
Parts of my tongue are still numb. This matters most when small things like my morning pills end up in the wrong part of my mouth. It takes a while (and sometimes an inspection) to insure they got swallowed and aren’t stuck in a cranny somewhere. Still doing a lot of swishing and brushing and flossing all day to get all the food bits out. Not eating sandwiches yet, but certain types of pizza are ok. Anything I can cut up is ok, but not all circumstances lend themselves to fork and knife, let alone a plate.
My lower left lip is still numb, but I have muscular control there. Eating food (like pizza) that rests on my lip as I bite, makes it hurt. Because I don’t feel how my mouth moves, I talk out of the side that I can feel. Actually I have been practicing symmetrical enunciation in the mirror. Is that vain?
My chin and surgery cheek are getting some sensation on the surface. Metal plate area aches on occasion (missing teeth still ache!!). And when I touch my chin, my lip tingles. I have no sensation under my chin. That space is still occasionally swollen and mostly still hard to the touch.
So I know I am healing. What’s so bad about that? Well, the free flap in my mouth is really healthy. So healthy in fact, that “cheek” is growing along the scar. Of course it has nothing to grow on with the jaw and teeth being gone. So it is just growing.
The doc called it a “benign overgrowth”. it looks like a uvula sticking out between my free flap and cheek. It became apparent because my free flap is shrinking (which it is supposed to do). Yes, I thought long and hard about referencing a different body part before I settled on “uvula.”
So my June appointment was moved to early May. We’ll see what they do about it.
Of less concern to the doctors (but just as alarming to ME!) is the other growths. Probably in the dozens, maybe hundreds? Fine dark hairs growing from my free flap. In my mouth. THANK GOODNESS MY TONGUE IS STILL NUMB ON THAT SIDE.
I didn’t know they were there until my appointment last week with the oral oncologist who was doing my 3-month check up on the non-cancerous (as of January biopsy) lesions in the other parts of my mouth.
(That all looks ok atm).
But she saw them and said something (i can laser those off if Dr K doesn’t) and the same about the benign overgrowth (I can remove that if Dr K doesn’t). And she confirmed the discomfort on my soft palate was due to a herpes outbreak— again, something I was ignorant of. When I get cold sores they used to be on my lips. Now evidently they are on my palate. I can’t feel them with my tongue, so they just register as sensitive places.
I continue to heal, for good and bad— you didn’t know there was a bad side to that, did you? I didn’t anticipate it either.
My taste sensations are coming back little by little. Many herbs are a mystery to me, but I have been using spice jelly beans to refine my palate on the various mints and clove. Thanks, Easter Bunny! Most fruits still a mystery, but I know fresh pineapple. :) I cannot tell the difference between the various flavors of Jose Cuervo margaritas in the single serving bottles. I haven’t tried all of them, yet.
Parts of my tongue are still numb. This matters most when small things like my morning pills end up in the wrong part of my mouth. It takes a while (and sometimes an inspection) to insure they got swallowed and aren’t stuck in a cranny somewhere. Still doing a lot of swishing and brushing and flossing all day to get all the food bits out. Not eating sandwiches yet, but certain types of pizza are ok. Anything I can cut up is ok, but not all circumstances lend themselves to fork and knife, let alone a plate.
My lower left lip is still numb, but I have muscular control there. Eating food (like pizza) that rests on my lip as I bite, makes it hurt. Because I don’t feel how my mouth moves, I talk out of the side that I can feel. Actually I have been practicing symmetrical enunciation in the mirror. Is that vain?
My chin and surgery cheek are getting some sensation on the surface. Metal plate area aches on occasion (missing teeth still ache!!). And when I touch my chin, my lip tingles. I have no sensation under my chin. That space is still occasionally swollen and mostly still hard to the touch.
So I know I am healing. What’s so bad about that? Well, the free flap in my mouth is really healthy. So healthy in fact, that “cheek” is growing along the scar. Of course it has nothing to grow on with the jaw and teeth being gone. So it is just growing.
The doc called it a “benign overgrowth”. it looks like a uvula sticking out between my free flap and cheek. It became apparent because my free flap is shrinking (which it is supposed to do). Yes, I thought long and hard about referencing a different body part before I settled on “uvula.”
So my June appointment was moved to early May. We’ll see what they do about it.
Of less concern to the doctors (but just as alarming to ME!) is the other growths. Probably in the dozens, maybe hundreds? Fine dark hairs growing from my free flap. In my mouth. THANK GOODNESS MY TONGUE IS STILL NUMB ON THAT SIDE.
I didn’t know they were there until my appointment last week with the oral oncologist who was doing my 3-month check up on the non-cancerous (as of January biopsy) lesions in the other parts of my mouth.
(That all looks ok atm).
But she saw them and said something (i can laser those off if Dr K doesn’t) and the same about the benign overgrowth (I can remove that if Dr K doesn’t). And she confirmed the discomfort on my soft palate was due to a herpes outbreak— again, something I was ignorant of. When I get cold sores they used to be on my lips. Now evidently they are on my palate. I can’t feel them with my tongue, so they just register as sensitive places.
At the end of back-to-work week 1, I was pretty tired and that is when my mouth was sensitive. I thought it was related to allergies— cutting the grass or eating too much gluten.
Back-to-work week 2 brought 2 appointments, three nights of going out eating/drinking/meeting with friends, and more mowing (once you start, you don’t stop!)
I have also been catching up with friends not in my immediate loop who knew nothing about my surgery.
Re-explaining the process helps me acknowledge the process and also gives me the opportunity to examine my changing perspective.
Nobody has gotten thru this pandemic untouched by grief or loss. But the effect of that loss for another person, remains unimaginable. It’s the same with cancer: You can’t carry the burden of someone else’s journey, but you can make connections to try to understand and empathize with their journey.
For all my friends who are just now reading about my journey, please know that I am golden when it comes to being surrounded by love. My journey isn’t over yet. I appreciate your thoughts, prayers, love and hugs whether in person or remote.
But whoever is praying for my mouth to grow back, please stop! LOL
When I learn the plan for dealing with my benign overgrowth and my hairy free flap, I will fill you in here. Until then, I can only offer the talk I give to myself when my confidence or esteem falter: Keep moving through it, and keep some space between your upper and lower teeth— it keeps you (me) from grinding and lengthens your cheek ;)
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