It has happened again, that I am finding it much harder to write about remission than illness. To talk about the practical realities of treatment is easy. Shit bags, missing hair, pain and the narcotics that go with it, eyebrows, etc.. Once the actual work of treatment is done, though, the emotional reality sets in and it’s confusing as hell. So in reverse chronological order I will do my best to bring you up to speed. (I’m sorry not to have written earlier).
– Last night I sat in traffic in a taxi cab on 10th avenue trying to get through the lincoln tunnel and out to NJ to hear U2 at Giant’s stadium. Glen, who had gotten us great tickets from Bono, was having a nap while Hedi Rose and I wondered if it was worth it. In the end, worth it or not, we bailed.. (Glen woke up and said, “whadda ya say lads, shall we go back home and watch TV?”) we were in gridlock in manhattan an hour and a half after the show had been scheduled to start. Oh well.
– Just before getting in that cab, I had delivered Hedi her new bike. A frame that I had nearly finished almost a year ago just before recurring. It had about a day and a half of work left, including assembly, which I managed to do over the last couple of days when I learned that she was in town.
– Monday I had my first day of work IN the shop instead of ON the shop. Since finishing treatment, I have been working on expanding the shop. Making two spaces.. one for wood, and one for metal. The idea is to be able to make fenders and other bits and pieces of good wood for bikes, without having to shut down the metal work in the mean time. It is my intention to start offering a limited quantity of fenders a la carte again. The process has been a lot of fun, and a tremendous amount of work. Building walls, wiring, moving heavy stuff, etc.. The result, however is a shop that I am really excited to spend time in!
– A week ago, as we were discussing what we should have for dinner, Hill got a phone call we had been waiting for. Her brother’s girlfriend had gone into labor. Hill hopped on the next available flight to Chicago and has been there ever since.
I am planning to head out there this weekend and meet young Violet Ryan Nanney for myself! No one should be surprised if I get a little piggy with her.
– Earlier that week I had a Petscan.
I went to see my doc when I got back from Nova Scotia to have my blood work done, and my port flushed.
“How are you feeling?”
“Fine mostly. Getting more energetic.. I have pretty painful Sciatica, though.”
“DIANE!!!! Order him a Petscan!! Ok. So describe what you are feeling.”
“Same area as that phantom butt pain from a year ago, but not constant and dull.. Acute, and related to specific positions. Like this, I’ll show you.”
I lay down on the floor and explained that sitting up in bed in the morning would send a shooting pain from my ass down the back of my leg.
“Wait! here. Lie flat on your back. Now raise this leg…. ” He put me through a series of diagnostics and then proudly announced that it was sciatica.
“Um, yeah doc. That’s what I said”
We have a special relationship.
The results of the petscan were good. Or at any rate, not bad. There was nothing new. Some areas of uptake around the surgical site had resolved. And one little area of concern had not changed. In other words, if it IS a tumor, it’s not doing anything. Cold comfort. This result, though, means that I won’t need to be poked or prodded or poisoned for a while. We’ll do another petscan in three months and be able to track the progress, if any, of this questionable spot. It may just be healing still going on from the surgery. It may be gone by the time we look at it again. In the meantime, I can just forget about the whole thing for a while, and focus on getting back to work. A good result.
– Two and a half weeks ago, on my last day in Nova Scotia, I had the scariest couple of hours of my life. I had what I can only describe as a nervous breakdown. It was sort of an out of body experience.. Or maybe an out of mind experience. It started while I was out in a kayak picking mussels for dinner. Sitting there on the water I began to talk myself into a state of utter self loathing. I can’t even, at this point, reconstruct the thought process. An hour later, though, I found myself in a little sleeping cabin apart from the house, curled up in the fetal position completely catatonic. My mind was racing, and none of it good. I couldn’t imagine how, for instance, how I was going to be able to get back to NYC (“drive the rental car, you fool!” “I can’t possibly!! I might drive it off the road and kill my wife in a state of self distructive insanity!!!”). I couldn’t imagine trying to claw my way back into the shop.. I felt quite sure that I only had a couple of years to live anyway. I thought about the various ways to kill myself.
From somewhere far back in my head, I watched myself go crazy. There was a part of me in there that found the whole thing fascinating. A part of me that was saying, “ok Ezra.. snap out of it. This is nonsense.” Intellectually I was able to recognize that what was going on was madness and yet I couldn’t stop the waves of very real emotion that were overwhelming me.
I had lost ALL confidence. The swagger and cockiness that held me together for the last 3 years simply vanished. I guess I had been waiting for that to happen.. and so far it had just kept NOT happening. I was forced to recognize that without the arrogance, the thing that I really hate about myself, I simply fell apart. (I realize now, that I have about three years of justifiable falling apart to catch up on!)
Hill had been napping inside, and came out to find me. I couldn’t even speak. I managed finally to say, “baby.. I’m in serious trouble.”
Special Ed brought a bottle of bourbon out and helped me talk my way back to earth. I went inside and cooked dinner.
Already, the next day, I couldn’t imagine how I’d felt the way I did. How I managed to talk myself into such a hopeless state. But I knew that it was possible. That it could happen again. I don’t think I’ll ever be the same. Truly terrifying.
I’ve done a terrible job of describing it. Forgive me. It scares me more than cancer, and I can’t even say why.. or what it is. I said at the outset that remission is harder to talk about than illness. Finally, with a break from treatment, your mind gets a chance to wander and reflect. The chemo fog lifts and with a clear head you get a chance to realize what you’ve actually been through.
It’s been a tough three years.