Subject: Watched One #03 (31Jul00) ER Again - false alarm
Of course, Karl and I both spoke too soon about our return to a first day of normalcy yesterday. Literally minutes after we had sent out those pictures on e-mail, (lookin' pretty cute for a post-surg babe), did I taste a funny taste in my mouth and Karl said my breath was kinda foul (thanks again...). We decided that it was worth paging the ever-responsive Andy Goldberg to run it by him, and he was not too concerned but figures, better safe than sorry and sent us off to the ER (again). I was apprehensive that it would be a junior resident -- as you can imagine I have VERY strong opinions about both the competency and personality of each of the members of Goldberg's more junior team -- but the resident on call was Michael Cattan, whom I like the best. Our fear was that the bad taste signified some piece of heretofore unidentified tissue that had gone necrotic or something like that. After a very thorough examination including numbing agents that could make your head spin, I was pronounced completely fine, patted on the butt (Michael is cute), and sent home. Overall, one of our less traumatic hospital visits. Karl and I even started a backgammon game (thanks Brian for the still-used set) while we are waiting. We are becoming more proficient patients. BUT, on the downside, it did put a rather adrenal end to our relaxing day at home.
It is 5:30 am and I have been up for over an hour. The wee hours of the morning, historically not my favorites, are becoming my friends. I find it very difficult to remain asleep through them, and last week would get very upset when I was faced with all that "dead time" in bed. I still have weird experiences at night, but Karl and I are learning to handle them in tow. Now, I have embraced the energy I feel at 4 am to have a good meal (or "feed" as it were), give myself my meds, meditate, sometimes clean, and have some quiet time. If I feel tired afterwards I can always have an 8am nap. My circadian rhythms will catch up eventually.
I am beginning to type with two hands which lightens the load of e-mailing considerably. So I imagine that Karl's and my missives may begin to be in sync with one another. Of course, his will be funnier and pithier (he always accuses me of wasting words), but you'll have to make due to with my ramblings.
Today, we have a somewhat big day. We were able to be scheduled to see a highly sought-after specialist in Hem/Onc ENT at Stanford, named Charlotte Jacobs. Strings were pulled. It has been requested that we bring every record, slide, report, MRI, note, x-ray, etc. to the meeting, and that it will take more than 3 hours. I am hoping that what will come of it is a slightly tweaked treatment plan that takes into consideration our most important long-term concerns which are: mortality, speech, and fertility (not necessarily in that order). It is so important for me to have utter faith in the path I have chosen than getting an opinion like this is critical.
Ok, fatigue is setting in and these letters are beginning to swim on the screen. Perhaps I'll take my 6 am nap. I'll be in touch,
The Watched One, Jen
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