November 10th, 2013
The island of Manhattan does not run North-South. Not remotely, in fact. The “southern” tip of the island points southwest, or maybe a little more accurately, south-southwest. As a matter of convenience we still say that streets run east and west and avenues north and south. Our house is on the “west” side of Manhattan ave. So our front windows face east (in fact east-southeast) and our back windows face west (in fact west-northwest). In the fall, as the sun begins to rise farther and farther south on the horizon, there comes a time when it begins to reflect off the windows of the apartment building across the courtyard straight into the windows at the back of our house, most especially the windows of the kitchen, so that early in the morning when you go down to make coffee, the kitchen is lit up as bright as day. The mechanics of this will be perfectly obvious to some of you.. the rest will just have to take my word for it. The point is that this morning, for the first time in what feels like WEEKS, I was the one to wake up first and go down to make coffee, not Hillary, and I noticed the phenomenon and was reminded both how wonderful it is, AND that I hadn’t been down to the kitchen before about 10:30 or 11:00 since sometime well before day light savings.
Historically, I have always woken up before Hill and been the one to go downstairs and make coffee. I have the pictures to prove it! But over the last bunch of years it has gone in waves. I would say that still the majority of the time it has been me, but those days may finally be gone.
These days I typically get up an average of 10 times a night to pee. Yup. The last time probably around 4 or 4:30, at which point I fall asleep and finally get into some really deep sleep, and am startled awake when Hill arrives with the coffee at 8:30 or 9:00. This last week that was certainly the pattern. The pattern was also that I would sit up to drink my coffee having trouble keeping my eyes open, and having trouble finding a comfortable position with one or another of my chronic pains flaring up. Yesterday, after finishing my coffee, in search of a comfortable position, I found myself lying down again and suddenly waking up to discover that it was noon.
I know this is the sort of thing that I’m supposed to be embracing. Rest, Ezra, rest. But, when, every other day, I need to begin irrigating at 3:30 or so in order for it NOT to interfere with making dinner, that makes for a pretty short day. Back when I had a nine hour workday, I found myself wishing that there where more hours in the day.. And now I’ve got a three and a half hour workday!!! It may sound as though I’m complaining. That’s because I AM!!! This shit SUCKS!
On Monday I woke up with sever pain in the front of my right leg. I may have mentioned it here before. Similar to the development of the left leg sciatica, this began as a deep dull ache in the right buttock and then began to radiate down, this time, the FRONT of my right leg. Sounds strange.. unless you’re a PT, or a neurosurgeon, in which case you say something like, “yup, sounds like impingement on nerve root 4 or 5 or maybe both.” The kind of freaky thing here is that the impingement is almost certainly being caused by the growth of a tumor, and NOT some sort of mechanical problem that could be corrected by the right stretching. The other freaky thing is that nerve pain has the distinction of not responding much to narcotics. The point of the story was that I had to email Jeremiah on Monday afternoon to tell him that we’d better plan to postpone our Tuesday match. That if he was free on Friday, perhaps we could play then. On Friday morning I had to email him again, this time to say, “better luck next week.” By five in the afternoon each day, I have been feeling so exhausted – so DONE, that the notion of being down town when that happens and then having to find my way home through rush hour is just too overwhelming. I have become quite delicate and it doesn’t suit me.
When I turned down treatment a year ago (almost!..), I had it in my head that I would just accept the medication necessary to keep me comfortable and gracefully slip away. That without the side effects of treatment to worry about, I’d be fine. It turns out that the disease itself has rather a number of side effects!! Don’t get me wrong.. I don’t for a second, second guess my decision. I believe wholeheartedly that if I’d gone the treatment route, I’d be dead already AND that I probably would have spent the winter and spring leading up to my demise in terrible discomfort, instead of tearing it up in the woods on the UTA. But, there’s no question that this cancer is catching up with me.
My pelvic bowl and abdomen are filling up with tumors. The whole area just feels packed in a way that it did not used to. They press on things in a weird way and cause strange sensations. Whether pain is under control or not, there are other issues. The peeing is one example. I’m not sure what the mechanics of it are, but at times I feel the urge to pee every five minutes or so.. so convincingly that I fear I’ll wet my pants. When I get to the bathroom, very little happens. I have to coax out a little dribble.. and then five minutes later repeat the process. Other times expecting that routine, I’ll get to the toilet and out it comes like a fire-hose. Occasionally, mid fire-hose, I’ll suddenly get an erection! Which is hilarious, of course. About half of you reading this know exactly how tricky it is to pee into a toilet with an erection, and the other half will just have to imagine it.. I’ve taken to jumping into the bathtub/shower where erect peeing does less damage! (Pete Shumlin called me on the phone the other day and I found myself telling him about this phenomenon, wondering to myself, “why am I telling the governor of Vermont about peeing in the bathtub with an erection,” but he was cracking up, so I guess it was fine). It’s also a bit of a liability when I’m out and about. The urge can come upon me in an instant. No warning at all. So far I have not wet my pants in public, but I’ve come very very close.
Pooping is even more complicated.
The degree to which my abdomen is packed can make me feel stuffed even when I’m quite hungry.
My sense of smell and taste (closely related, of course), have started to behave strangely. Things that I used to love not tasting very good to me anymore (strong beer for example.. meanwhile, I NEVER used to like sweet things, and now I find myself craving them). Hill has had to stop using certain lotions because the scent is so strong and medicinal to me.
I can go on and on. The biggest thing, though, is just the exhaustion. I start the day with the best intentions.. with goals and ambition, but as the day progresses, I can feel that every little thing I do is chipping away at my day’s allotment of energy – Like playing some sort of dungeons and dragons type video game where you watch your bar of life force at the top of the screen getting smaller and smaller – until finally I’ve got nothing left. I simply need to stop. I have never had a day’s allotment of energy before. This is foreign to me. I’ve always been a bit of an energizer bunny. The quality of this exhaustion is desperate. When it finishes me off, it is with a quality of desperation that I need my bedroom.. need to lie down.. need the comfort and safety of the familiar.
I don’t mean for this to be a bummer of a post. It has been a minute since I’ve written anything here and this morning I finally had the energy to! As has always been the goal of this blog, I am simply documenting the progression of this disease as honestly, and with as much detail as I am able. The truth is that the DISEASE is a bummer. Particularly in what I imagine are these final stages. It has left me feeling frustrated as hell lately. There is so much in this life of mine that I adore. So much joy that I get out of creation.. out of working in the shop, making photographs, cooking and sharing good meals. Lately I feel as though I’m getting robbed of that joy because of simple exhaustion. Sadly I don’t get the same reward and feeling of joy out of lying on my back in bed all day (with frequent trips to the bathroom for half-assed peeing).
But today is a good one. I was up early for a change, it’s an off day for irrigation, and as soon as I finish this post (how on earth has it gotten to be 2:00 already!!!) I’m headed out to the shop to glue up stool legs, and play on the lathe!
Fast Boy OUT!
(Big big love).