8/19/23
I know, I know! I’m not supposed to be here anymore, I’m supposed to be at home, on my couch watching tv, eating my own food and showering like a normal person! I told you that last week! Why isn’t it true?! Disappointingly, and jumping to the summary of this blog entry, I’m still in the hospital, and this is where I belong right now.
This week has been a set of mild disappointments. They would typically be huge and I would whine and complain about them, except in the long run, they turn out to be mild.
The mouth sores I complained about last week have continued to bother me. Over the weekend the doctors were really nice about it, and explained that I needed to be “perfect” to go home, and mouth sores weren’t perfect. By Tuesday, I learned the hard way that open sores in your mouth plus the bacteria that is generally in your mouth plus no white blood cells equals a fever and an infection.
Tuesday afternoon I had a low fever and got started on some iv antibiotics. I never felt bad (I’m taking some Tylenol for the mouth pain), but fevers can be very serious with no white blood cells and could quickly get out of hand – particularly with the nasty bacterial (and viruses!) floating around here.
With the fever, I was told I’d be here for at least a couple more days, however by yesterday (Friday), it was pretty apparent that I’m not likely to leave before the 4 week mark (which is next Friday). My blood counts are still really low - which is good generally because we hope that means the Chemo was effective - but it also means that I literally have no protection against infections. I need platelet or blood transfusions every few days. Until the white cell counts go up, it’s too likely I’ll get another infection for them to release me into the wilds of my home.
I have lots of thoughts about this. First, it’s incredibly disappointing. I can’t use that word enough to describe the situation. I was shown an opportunity, only to have it slip away. Incredibly disappointing. Second, John left to go back to school today, and Drew will go next week. By the time I’m out of the hospital, they’ll both be back in their college grind. This delay means I can’t watch stupid YouTube videos with them on the couch like I could in early June. They can’t even come visit me in the hospital bringing soft Five Guys hamburgers for my mouth while we watch old Jeopardy videos.
Third though, when I sit and ruminate on the disappointments and losses about this summer and the hospital, I have faith and trust in this longer process. I’m not a medical doctor, even if I pretend and throw around some fancy terms. I cannot understand my risks of the neutropenia (see what I did there?), I cannot question the many people who want to keep me here because they think it's in my best interest, I cannot second guess the decisions and protocol and try and weasel my way out of these luxurious accommodations (I would never!) with rhetoric. This is my (mild) disappointment, so that the greater goal is attained. This is where I belong right now.
Some fun news - I've got a pass now to go anywhere on the hospital campus. What this means is you might find me, on a nice warm afternoon, with a drink on the picnic tables in the front of hospital. I can go to the hospital Panera (there's one here!) or Starbucks (same!), or cafeteria and get a drink and sit outside in the sunshine. It's the little things! See, picture of me with a Panera Mango Smoothie at such picnic table.
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