It's Not All Rainbow Farts with Jimmies

or 

Postcards from Anatevka

So this post may not be quite as upbeat as some of the others. But the reality is, I'm reporting from Chemoworld, and it really isn't always a great place to be. In fact, a lot of the time, it sucks.

There's a Yiddish word I have always appreciated - well, in fact, there are many. One of the wonderful things about Yiddish is it often has individual words that explain concepts, concepts that are more complicated to explain in English. Both Yiddish and ASL have it all over English, in terms of nuance and subtlety. 

Anyway, the word I am talking about today is "emess." It is pronounced "EH-mess" and it means "the actual facts, the unvarnished truth."  (I always thought the network could have used this, and called themselves "Emess NBC.")

My doctor, Mitch, doesn't know this word, but he gets the concept, and he understands that, when we talk, I want the emess. I want to know what is going on, and I am not afraid to ask him the questions to get at the real facts. He has learned to just tell me.

Yesterday, he called me to check in. I told him how I'm doing and how I'm feeling - that basically I feel a lot better but I still have almost no energy. I'm not sleeping 20+ hours a day, but I'm certainly not jumping up and doing things. I've spent the last two weeks fantasizing about replacing the cord on the second Frigidaire Flair - a job that will probably take me about 15 minutes - but I haven't been able to find the energy to do it.

Then Mitch told me he wanted to give me the emess. He said, "Dmitri, you have a particularly virulent form of cancer. We can't take it lightly, and we have to hit it as hard as it's hitting you. We have to get on top of this thing and knock it back, even if that takes you down quite a bit in the process." No real news there.

But then he told me, "I doubt that the second chemo is going to be easier than the first, and, in fact, it might be harder. We have taken out your reserves, and now we're going to hit you again. Any energy you think you have now will be totally gone." 

It made me realize that life in this strange country is made up of a healthy dose of fantasy. I have pretty much written the script for Chemo Number Two, and it went like this: I got the infusion, I felt out of it for the rest of the week, and bounced back quickly - at least a lot more quickly than I did for Chemo Number One.

The reality seems to be, I won't. In the same way that I have been gone for much of the last couple weeks, I'm going away again. I remember getting up in the morning and taking meds and eating some breakfast, drinking a Boost, and then passing out on my bed and sleeping for two and a half hours. I'm heading there again, it seems.

This also made me realize that my blog has skimmed over some of the more unpleasant parts of chemo. For the most part, I'm not talking about the things that most people don't want to hear, and I've been trying to protect my loved ones from their own fears and grief about my situation. Although I still have no plans to go into great depths about things like constipation and night sweats, the reality is, I am truly here, reporting on this new experience. Some if it ain't gonna be pretty.

The emess was not all bleak. I asked Mitch, "What happens if we do this for another round or two, and then when we test, we find it hasn't worked?" He was completely nonplussed by that and said, "There are still LOTS of options out there for us to try. We'll find something that works for you and for your cancer."

So folks, this is definitely going to continue to be a rocky road. The next two weeks, one might want to think of me as in transit - maybe crossing the Bosphorus in a rowboat. The distance really isn't that long, but I'm not going to have good internet access nor cell phone coverage. All I can do is row, try to keep my head above water and accept what is happening. 

Believe it or not, I'm still trying to enjoy this. I'm still fascinated to see what this has done to me and to my body. It's so interesting to me that my muscle mass could fall away so quickly, that my energy levels could just dry up without a moment's hesitation. And really, I used to do all those things? Wiring lighting into old houses, climbing up and down ladders, moving radiators. Writing policy statements of web accessibility. Even just trotting down the stairs and back up. It seems amazing to me that I could do that.

It also makes me feel like I'm experiencing mitosis. Before this all started, I didn't give much thought to the difference between myself and my body - we worked together, we did what we wanted to do. As I got sick, I realized that what is "me" and what is "my body" are two distinctly different things.I have kept trying to get the two to play nicely together, but it is a struggle.

Now I realize I've split again. There is still me, and there is still my body, and there is my cancer. We're all in here, inhabiting this ever-shrinking space. It gets crowded, and sometimes noisy. I find myself bumping up against the other participants, barking my shins on cancer, tripping over body parts that don't respond in the way they used to. 

The goal here, as I see it, is to make some room: if I can kick the cancer back, then my body and I can start to redivide the space and try to rebuild this wreck of a remodel.  I have to believe that the time will come again when the high point of my day is something other than going to the bathroom or moving from the bed to the couch. As Tzeitel said, "there's more to life than that - don't ask me what." 

More to come.