When Scott leaves San Francisco for work in San Jose, the sky is generally just considering light.
His habit the past few months of parenthood has been to get up and take Madoc out for a walk after he showers. I don't go--it's a cancer perk that I don't have any pressure to roll out of bed and hit the operate button as fast as he does.
It's not my normal mode, though, to be so slothful--I'm actually usually up, and these days I'm huddled in front of my portable heater in the living room having coffee. In losing all my body fat, all that wonderful butt padding I used to have, I also lost my ability to stay warm; remember, I did say I was becoming Californian.
My typical day is usually a balance between "have a doctor's appointment" or don't--don't days, I try to straighten up the apartment, go to the store for dinner (his, not mine), or accomplish something from my long term list of want-tos.
Today I have no appointments, which is wonderful--I'm thoroughly sick of doctor's offices and everything associated with them. I suppose the exception right now is my oncologist's office, where I go weekly. The staff is extremely pleasant, and the news lately has been decent, so the pressure to deal is lessened considerably. It's far worse when I go to someone new and have to fill out the paperwork, a continual re-do of the same paperwork I've been doing since January when my tongue really swelled into the form of a sausage roll.
It's quite lovely here today but it's only in the mid-fifties temperature wise, and it's San Francisco damp, so I'm by the heater, and Madoc is sleeping elsewhere because it's a bit hot for him near me. As of now, I'm nervous because I suspect Scott's new Iphone will arrive and I'll need to sign for it--and I suck at paying attention to messages on my phone. This is important because our front door is programnmed to ring his phone, and he can let people in. I cannot--so for me to know that someone is here, he has to send me a message. And do I pay attention? not really.
In the early going of cell phones, I refused to have one--even when I could talk, I hated talking on the phone and nothing seemed less attractive to me than the idea that someone could call me at any moment and have certain hope of contacting me. It's perversely true that the less I can talk, the more people want to talk to me: Healthcare offices will not email one based on the hackability of email (though the ease of capturing cellular conversations seemed to have eluded them).
I'm treated, then, like a shadow in my own life because everyone has to call Scott, as if he's my parent and I'm the errant sick boy who can't be trusted to answer. Well, they could call me, and I could answer, but they wouldn't understand me. I do talk. I talk to Scott who can't hear me. I talk to our friend Terry who isn't half bad at interpreting what I say--and once some of the swelling I have in my jaw is gone, my speech will be exponentially better. Imperfect, but better.
Without 85% of my tongue, people are surprised as how well I can be understood, and often surprised when I tell them that I have a rather acute ability to taste. I know what most everything I put in my feeding tube tastes like, and I have definite favorites and not-so-favorites. The hardest thing to taste is red wine; white is much easier, it has generally brighter astringent notes that make for better "backwash" in my gullet. I know that sounds gross, but I can't think of a better way to describe it.
While I'm waiting for Fedex, I've been having Orgain Organic shakes and Odwalla Chocolate Protein Monster shakes. The Orgain vanilla flavor tastes like a Dairy Queen soft serve ice cream cone that melted--and being Midwestern, I love that. The chocolate is rich and smooth. Odwalla has too much sugar, but it tastes good. Sugar has funny lingering effect in my mouth--I taste it longer and more distinctly than virtually anything else.
I had spent the earlier part of the weekend, as I wrote before, feeling good--though by Sunday that wore off a bit. That's natural after a big chemo day, and I was incredibly fortunate to have 2 full days of feeling good AFTER they gave me the 6 hour dose. Unheard of. Also unusual--no vomits. But on that score, I have to say I've learned my lesson--I am not superman., This time, I took precautionary anti-nausea pills. To say that such pills don't work when you already think you might hurl is to be obviously oblivious.
I still have the feeling that everything is on a moving conveyor belt to the land of Better--a slow belt but steady. Like an Amazon warehouse, the belt has to stop occasionally, and occasionally wrench backwards somewhat. Problems emerge. But in small steps, the items get to the boxes, the boxes get sent. I'm early in the process, but one of these days, I'll be delivered. Hopefully to a nice address on the continent of health--something like a Sylvia Plath poem I read in "Ariel" with a whole lot happier ending.
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