Today I spoke for the first time since February 12th. Technically that’s not true since in the ICU they got a “1 2 3 4” out of me on the 15th but I was under heavy sedation. Apart from that, I have been communicating with a pad of paper and with keyboard devices when given the opportunity.
I got my trach downsized first thing this morning and it makes a world of difference to my swallowing, my breathing and my speaking. I can plug the hole and breath through my nose in and out, and my voice sounds more or less like my voice. Not quite as good as before surgery but certainly worth feeling good about. Or rather it did at 7:30am. By the time my mom left for the airport at 2:15, it was pretty hoarse (though still not as bad as after the surgery in November). Totally worth it. Also, the taste thing seems to be subsiding. If I am lucky, I will be drinking water tomorrow like a normal person and off those insipid thickened liquids (there will be test results in the morning). But there is more weird diet stuff for me in the near future.
I’ve been scheduled for Radioactive Iodine Therapy (RAI) on March 10th at the Jewish General, which is great. The sooner, the better. I do not want to be fully recovered from surgery only to get beaten back down again. I’d rather take my shots now and then do all my recuperation in one shot. RAI can also mess up your taste buds and offers a number of other unpleasant side effects which I won’t bother detailing, but there you go. It’s 2.5 days in isolation and at the end you have to throw out your clothes. Both my cats went through it, except if I’m lucky I’ll find a way to have internet. In preparation, I will be on yet another special diet, so locals please hold back on the food gifts for now. When I get home, it’s going to be all “vegan low-iodine chef” for awhile. I will make it be better than it sounds.
I am not a doctor but if I were you would be my favorite patient–what an intrepid, can-do attitude you have! Wanting to get all the suffering out in one go makes a ton of sense to me. My sister did some chemo for sarcoidosis and I hear you about the clothes thing. I personally hate ralphing but since you’re in drug mode perhaps you won’t notice so much, and it *will* bring back some college flashbacks, some of which will be pleasant. As for the other part, we can chat about that–I like gross talk (as Christian can attest–he has more dignity). I can tell that you are squeezing everything out of the iphone that can be squeezed. I was attached to that thing like nobody’s business at DML in LaJolla, for twittering and such.
Off to have dinner with Tarleton Gillespie, who is here as a visitor. He had a major travel screwup and had to drive a rental from St. Louis to here, and got a ticket on the way. Ithaca to Champaign is a harsh toke–two small college towns does not a good trip make.
If anyone can make iodine-free vegan food taste good I am sure it is you. I don’t even know what iodine-rich foods are, but I’m guessing sardines and such.
I am so glad that your sound check went well and your voice is back!!!! the world needs your voice in lots of ways.
…very glad to hear that your recovery is progressing well, Jonathan, and thank you & Carrie for all the updates. You have lots of love & good vibes emanating from Indiana.
I can hear you speaking in my mind’s ear. What a relief!
hey Jonathan, glad to hear you’re yakking–but dammit I won’t be able to make it down there today because some moving van guy is messing with me. I know this is a strange way to communicate, but I wasn’t sure if you were answering the phone…
What will you do without the neck hookah???
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