According to Joey McGovern, I may very well eat a hamburger again, but my dual goal of eating peanut butter from the jar and Super Duper Burgers at will form a significant, and highly challenging goal. I guess that's the kind of guy I am--a Midwesterner who loves what he loves.
Today was my first appointment with the Speech and Swallowing therapist. UCSF is one of the few places around that has a Joey, who specializes not just in Head and Neck Cancer, but also in the dual functions of speech reclamation and swallowing therapy. Frankly I was kind of scared of her....
Why? Because I'm scared of swallowing. I'm scared of water. I'm scared of drowning. I'm scared of not processing and instead filling my lungs, pneumonia, another hospital visit--oh, god, not that. University Hospital did their job well, but well enough to convince me I want no part of hospitals.
So, I did something I rarely do--I told Joey I was scared. She said we were going to swallow some water and I said uh, no, I'm freaked out. So she backed off, and eased me through a few exercises, built up a bit of confidence and then BAM. We tried some swallowing.
Damn her. She charmed me. She got me on her side, wanting to please her, and then she got me to swallow. A tiny bit of thickened water, but she showed me it could be done. And I lived. I lived!
No one has really told me how fast one loses function--that it can be hard to walk after a week in bed, hard to swallow after a couple of months not doing so--that any muscle we dont' keep stretching, those of the mouth, the jaw, simply and quickly get used to not stretching, and they stop.
Now, I have to wake some parts of me back up. My adam's apple, my throat, my mouth which doesn't stretch well. It's time to go back to work, open like other people's mouths do, as if I were attacking a Dagwood sandwich, far in my future, but thinkable nonetheless.
I was given a lot to think about today. Today was patient education today at my oncologists' office. I spent an hour with the nurse practitioner who went over some of the side effects of cisplatin (that's my chemo treatment), and especially learned about the nausea, and anti-nausea suite of drugs they'll have me take. Upside: not especially related to hair loss; Downside; definitely related to sick stomach. Tricky at the best of times, trickier still with a trach tube...
Cisplatin will be given to me 3 times over a nine week period--but every week, my blood will be tested, my ick will be assessed, my pain queried. Cisplatin makes one's tissues more susceptible to radiation, and because I'm getting a fairly high dose of radiation, there's serious expectation of mouth sores, burns on my skin, burns on the inside, a burning throat, fed by a mouth full of sores. Possible.
I'm sobered. Not scared, not like swallowing water...but I'm very sobered. I cannot stop radiation , and chemo is a given--and I'm ok with that fact. I want to get better. I want Dr. Kramer to get me infused and Dr. Yom to give me some treadmarks of treatment. I want Joey to freak me out with some freaky looking applesauce and give me hell when I don't pull my jaws apart enough times per day.
It's ok guys. I'm scared shitless but I like you.
Congrats on swallowing! Glad you have another practitioner you feel good about, too. I have a friend doing chemo for liver cancer right now, and she found that a particular herbal supplement helped with preventing the mouth sores. I will check with her on what that is and comment again when I know.
ReplyDeleteThe supplement I was trying to think of is Glutamine. Maybe someone else has mentioned it to you. I think people often use it, mixed with water and baking soda, as a mouth rinse, which I'm not sure would be possible for you, but I believe that just ingesting it is helpful, too. My friend puts a big scoop of it in juice or a smoothie, and she has been surprised to have no problems with mouth sores at all. Might be worth checking out.
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