Tuesday, November 30, 2004

Things Can Always Be Worse

A family member recently told me on the phone, with I imagine helpful intentions, that "things could always be worse." "How's that?" I foolishly asked. She went on to tell me some gruesome tale about a friend of a friend who had gone through two courses of chemotherapy for cancer and it "still didn't work. She's only probably got a few months to live. So, you see, you don't have it so bad really." I shook my head. This is supposed to help? I thought. But I didn't say anything to her. Like I said, she meant well - I think. This, I now remember, was also a pattern in our family. There was always someone worse off than you, which also seemed to mean that you had no right to complain about anything, ever, no matter how sick you were or how many bones you'd broken; there was always that phantom somewhere who was suffering much more. The kid who lost his legs or the little girl who went blind and deaf on the same day her mother got run over by a streetcar. Who could compete? My pain was irrelevant and somehow maybe even bogus. That's what I thought. So now, you know, I just don't want to hear that shit anymore. Everybody's pain is real and valid and doesn't have to get compared to anyone else's.
So there. I think anger serves some purpose here. It invigorates me to get mad at stupidity. Chemotherapy and psychotherapy are not really all that far apart. In some strange way, in fact, I feel like I'm making progress in personal development behind this treatment. It does teach one to be humble, to live with pain, and to be grateful for family and friends and all the support and love that is there. I know that there are people out there going through the same awful trial by interferon I am without that support. It must be incredibly lonely for them - not to mention how trying in practical terms. How do you feel like this and go to work every day? And when you no longer can, how do the bills get paid? Where does the health insurance come from? I went to a support group once where I was the only one there who was actually able to undergo treatment. Others had stopped and started. Others knew they couldn't even afford to start. One woman was on social security disability after almost being reduced to homelessness.
Life is too fragile to get through it alone. Thank God I'm one of the lucky ones. See that, I'm doing it to myself now. "I don't have it so bad. It could be worse."

Monday, November 29, 2004

The Holidays Approach - Oi Vey!

Another hard week-end. You would think I'd be used to it by now. I give myself the interferon shot on Friday night (my Shabbos needle) and from there it's all downhill. There's nothing positive to be said about it. I think what really depressed me this week-end was that I was more sick (feverish/headaches/chills) on Sunday than I was on Saturday. I expect it, am waiting for it, on Saturday. I guess I convinced myself that Sunday would be better, and when it wasn't I had no place to go. I need to get more clear about how this thing works. I can't be waiting for "better." There is no "better." I get mad when other people ask me if I'm feeling better today, but then I turn around and do it to myself. Optimism (at least of that sort) doesn't seem like much of a psychological aid. This damn thing takes endurance, not a smiley face. It takes courage too - the ability to face every day, knowing that you're going to feel like half a man. I guess it takes courage for all of us to get through the day, but it sure has come clear to me in the last eight weeks how hard you have to fight just to stay in the game. I always liked the Joni Mitchell line, "Something's lost and something's gained in living every day." These are days when I need to see those "both sides now."
We did survive Thanksgiving. I was worried about the holidays. Still am. Even under normal circumstances, they can be disturbing. All that forced jollity and the stupid Christmas specials on TV. Even Hannukah, which is my favorite holiday, can be irritating at times. As a kid growing up in a mostly assimilated Jewish family (at least we were trying), Hannukah often seemed like the Jewish consolation prize. We didn't get Christmas trees, but we did have this candle thing and got presents every night of the week instead of on just one dopey morning. I mean, it's all about the presents. Hannukah is kind of a minor Jewish holiday anyway (a commemoration of a battle - one of the few that went well for the Jews), but given the obscene commercialization of xmas, we Jews had to try to make Hannukah competitive. The real pleasure is in lighting the candles, saying the blessings, and, like my younger daughter told me she used to do, staring at them until they go out (a long stare). But, back to Thanksgiving, even though I have no appetite, Beverly didn't let that stop her from making a special, if non-conventional, dinner and serving it with great style. I felt like a kid, moving the food around on my plate so that it looked like I was eating, but we had our celebration - and we'll do it again for Hannukah and still be depressed some of the time, because, face it, isn't that what the holidays are really all about?

Wednesday, November 24, 2004

Gray days and the NBA

Ah yes, take a deep breath. The day stretches out in front of you and me. Will it be a good one? Is it full of anxiety? What do you have to look forward to? What needs to get done? Who are you going to see? Do you want to? What do you do just for laughs? Who would you really like to talk to? Hold hands with? Where are all your old friends these days? Wouldn't it be cool to reconnect? Hey, I'm just asking. My life is slowed down to the point where sometimes all I have to do is reflect on existential questions. I'm not saying that's the healthiest pursuit one can embark on while the weather outside is cold and damp and gray, but it's maybe not the worst either. Anyway, someone has to do it. I don't want to think about physical health today. I mean, what is there to think about. You've either got it or you don't. And like I've said before, when you've got that good health thing going on, you mostly don't notice it or credit or thank the big dude in the sky for it. And when it's gone, it's too damn late. Damn, what is all this drivel? Hey, you wake up and you deal with what's on your plate. That's all there is. Some days, some years, are harder than others. My whole, entire, endless, stupid point, which I will make over and over to the point of wretched redundancy is to cherish it all and wallow in it and lap it up. What's the it? you ask. Life, baby, life.
One more thing for today: I'm sure we've all been sickened to death by now with the videos of the brawl with the Indiana Pacers players and the Detroit Piston fans. I don't know why I'm so fascinated and repelled and attracted by this whole thing, but I am. I mean, they (the NBA players) are just a bunch of extremely overpaid, egomaniacs who think they are entitled to anything they can take because of their talent and hyperactive genes. And when someone dares to diss them, they go insane and start throwing punches. Now today, I read that the player's union is protesting the length of the suspensions. Much too harsh, they say. Bullshit, I say. First, Ron Artest shouldn't be suspended for the rest of the season. I agree; he should be suspended for life. Never has there been clearer evidence of rampant thuggishness and criminal behavior. Is that going to change after this season? That dude belongs in jail. And Germaine O'Neal (who I thought previously was a pretty decent dude - like I knew), deserves every bit of his suspension. If he hadn't slipped while cranking up for his punch at some little dorky white guy (Germaine is 6'11"), he might have exploded the guy's skull. Put 'em all in jail, I say. One last overwrought point here. When Ron Artest got his clock cleaned by big Ben Wallace, why was he able then to control his famous temper. He backed way off, didn't even open his mouth. It was only when he saw some scrawny little dude in the stands, who he thought (mistakenly) had thrown something at him, that he started swinging. Oh man, I think I'm through with the NBA. I've been a fan for thirty-five years, but these guys suck. All of them. It leaves a bad taste in my mouth - almost as bad as from the ribavarin.

Tuesday, November 23, 2004


Well, you can't expect me to keep writing about my damn chemotherapy all the time, can you? Of course not. You're probably getting tired of it already, aren't you? I know I am. I mean, I'm not accusing anyone of being unsympathetic, but one does need to move on now, don't they. Ah yes, if only I could. I would do most anything at this point to not have to go through the next 40 weeks. I'm having a hard time imagining how and if that can happen. I mean, people I love tell me I can do it - but on what are they basing that assumption. I don't know if I can "do it" and I've been around me all my life.
It's cloudy and gray today, feels like winter creeping in. I hope it snows this year; that might feel cozy. I wouldn't feel so stuck if everybody was stuck with me. Not sure about another one of those ice storms we had last year - that was intense. But beautiful. Here's a factoid: Number of times I've cried in the last seven weeks - 20 (approx). Number of times I've cried in the rest of my adult life - not that many. The winter could be mean. But I think I am up for it. I just have to keep reminding myself what I'm doing and why. Maybe everyone needs to do that every once in a while. I mean a person can definitely fall into bad habits in this world. The unobserved life and all that. You have to try to bring some clarity to this endeavor. At least in the moment.
Before it slips my slippery mind, I wanted to wish everyone a happy Thanksgiving. Beverly and I are just going to have a quiet dinner at home. I've been going up to Seattle for the past few years to have Thanksgiving dinner with my friends Marko and Lynn and a bunch of other stragglers and orphans. Last year, Bev went with me for the first time - and, of course, she fit right in. But this year I had to tell Marko that we were going to pass. A couple reasons. First, I would have a hard time doing that much traveling and being away from my home base. I need to be able to crash when I need to be able to crash. And then there's this whole thing about the massive meal that is at the heart of Thanksgiving. Everyone waits around all day for the turkey to come out of the oven and all the food to be laid out groaning. And then to eat and drink till you're sick. What else does Thanksgiving mean? A last friendly meal before committing genocide on Native Americans? So, I didn't feel like I could be a real part of enjoying a Thanksgiving feast. And believe me, Marko puts on a good one. I would just sit there and move the food around on my plate and be vaguely sickened. I mean, I know it should really be about spending time with friends and family - and if we didn't have to go to Seattle, I'd probably be there. But for this trying, beautiful, awful year, it's just me and my honey. And even then she's going to make way too much food and I'm going to try and act like I love it all. Happy Thanksgiving - take a moment to appreciate how lucky you are to be able to enjoy that big ass turkey and all the stuffing you can stuff in your face.

Monday, November 22, 2004

Monday, Monday

It's a new week. One more down. I hate to have to look at my life as a countdown, something to get through, get out of the way. I've always tried to be a live in the moment kind of guy. Well, at least I had an appreciation for that philosophy. Now everything has changed. Of course, I can still appreciate the flow of the day, the moment here and there, the connections when they come. But I'll tell you I sure have an increased appreciation of what it means to be healthy, to be vital, to be able to do mostly what you want - at least in physical terms. It about breaks my heart to watch people out in the streets doing their thing without a care in the world: riding bikes, walking about, playing basketball at the playground. And as I watch them, I can't help thinking that they just don't understand what a great gift it is to be able to do these things. I'll tell you the only way to truly appreciate good health and vitality is to lose it. I think that all of us just take everything we have as if it is our due and not a privilege. Look around, brother, and thank whoever you want to thank for what you got in your life. Jesus, I'm starting to sound like some chemically deranged preacher. Maybe that will be my new calling: the church (synagogue) of the disabled and insane. We're all invited. No, I really don't have all that much to tell anybody. It's all a learning experience - no matter how old you are. All I can do is keep on keeping on - I do love those cliches. My thoughts seem more than normally disorganized. Monday I'm still close to my week-end meltdown, and my brain is trying to rise back into coherence, though obviously (if anyone has made it this far) it's clear I ain't there yet.

Friday, November 19, 2004

Friday Night Fears

Well, it's Friday again, which means that all day long I'll carry around a sense of incipient dread. Friday night is when I administer my interferon shot. I hate it!!. Not just because I know that I'm then going to be knocked on my ass for the next 48 hours, but also because the whole process of injecting myself feels so disturbing. I guess it's ironic (if you dig irony) that what got me into this mess in the first place (injecting drugs) I now have to do again to cure myself. And where before I guess I even liked the whole shooting up process, it now unsettles me down to my bones. Who says G-d has no sense of humor? Anyway, enough whining. You do what you have to do. I'm learning, I hope, to be more accepting of this whole chemo experience - though the above rant might not bear that out. What I think I'm learning, though, or adapting to is the concept of being sick as being normal. For me, at least for the foreseeable future, I'm going to feel sick all the time. That's my norm and it does me no good to try and change that - as if I could. My sister, bless her heart, keeps calling me up and asking if I'm feeling better yet? I had to tell her finally that there is no feeling better. "I know you want me to feel better, but that's just not the way it works. This ain't the flu bug."
The first six weeks, I've been trying desperately to get used to it all - this whole changed reality. Bev and I have been going through some chaotic times, times where we just don't know what to expect, dealing with emotions that don't always make sense. Just this week I've begun to feel maybe a bit more grounded. Of course, I'm still fearful at times, and even resentful and angry some times; but I also feel braver. I mean these are the cards I've got to play right now, so I'm going to play them as best I can. This blog is part of it, as is getting out of the house even when I don't feel up to it - and talking to and seeing friends is huge. When I'm sitting here writing, I'm not feeling dizzy or weak or nauseous and when I meet a pal for coffee, it never seems to come up that I feel like yesterday's news.
So, it's a long way to go, but I think I've gotten to some different stage of the experience. No doubt there will be many more - and not all of them pleasant. But what the hell, I've got great support and a pretty good chance here to get better - and that's a damn good thing.

Thursday, November 18, 2004

Side Effects

It pisses me off that they call all my reactions to these drugs, side effects. It's like that's a way to make light of them, diminish their importance, like some damn ad on TV for Cialis. You might get a headache while you're fucking all night long, but no big deal. I mean, there's nothing side about them. They, at least the ones I've experienced from using Interferon and Ribavarin, are damn MAIN effects. They may not be the intended effects, but they are damn real and persistent. And I can count on them being there everyday. Aren't I lucky? Yes, I guess I'm a little bit angry and it's not just about nomenclature. Maybe it's my way to fight back. I have to accept what's going on in my body, but I don't have to let anyone marginalize it. Though I often feel like a shadow of my self because of all these damn "side" effects, I am nevertheless, grateful that there are finally such drugs that, in the best case scenarios, can actually CURE this damned disease. Until recently nobody would use the C word in conjunction with Hep C. If you had it, you had it for life. Now, many people after finishing the treatment and even for years after - have eliminated the virus from their system and allowed the liver to regenerate. Of course, that's what I'm hoping for and working towards and if it takes dealing with all these goddamn "side effects", so be it. I think what I need to do is come up with a better word - just to set my own feverish mind to rest. Any ideas?

Tuesday, November 16, 2004

More Stuff

I must admit I'm feeling a little frustrated right now, after futzing with this damn computer for the last five hours to get into my blog. Okay, it wasn't five hours, more like fifteen minutes, but it's still frustrating. I think my level of frustration is set a good deal lower these days, prone to instant irritation as it were. So, okay I'm leaving that behind. Here I go.
I don't want to be disingenuous about how I initially got HepC. It's not very glamorous. Nobody is likely to have runs and pink ribbons for HepC sufferers, though they should. The disease is epidemic, but it's also sort of in the same boat as AIDS. You got this because you were a sinner and now God is punishing you by eating up your liver. Well, maybe so, if you think that way - and given the last election, we all know that that is how at least half the country thinks - the good old moral majority resurfaced. The fact is that you can get Hep C in a number of ways - blood transfusions (before 1991 they didn't even check blood donors for it), tatoos, health care workers might get blood sticks; but the overwhelming majority of people with hep c, whether they admit it or not, got the disease by sharing needles to inject drugs. That's how I got it, though I can't focus on a particular place or time - suffice it to say, it was back in the early 70's and I was young and stupid and looking for an escape that I thought I might find by injecting heroin into my veins. It worked too, for an hour or so at a time. And, in a way, I've been paying ever since. The poet, Seiku Sundiata, who we saw this year at the TBa festival, said that the body remembers all the insults that we impose on it - and somewhere down the line makes us pay. I hope that's not 100% true - but in my case with Hep C, it is. But that's all in the past, and hopefully, I'm over blaming myself. That doesn't do a whole heck of a lot of good - and I am who I am right now because of the sum of ALL my experiences. I'm not banishing any of them, including the one I'm going through now. More later.

Love, Rob

Monday, November 15, 2004

Some Background

I figured I might try this Blog thing to keep in touch with people - and to kind of keep in touch with myself. For the past 6 weeks now I've been undergoing chemotherapy treatment for an advanced case of Hepatitis C, which I contacted years ago. It's been, to say the least, unpleasant and difficult, but there have also been moments of transcendence - few and far between, but it does remind one that there are benefits in even the most trying of circumstances. The part of all this that I'm finding hardest to wrap my brain around is the length of treatment - 48 weeks. So, I still have 42 to go. There are days when I can't imagine getting through all that. I mean, these drugs are powerful and I am sick every single day. People keep asking me if I feel better yet. That's not the way it works. There is no better - at least not for more than a year. Being sick is the norm. I've never experienced such a thing before and wonder about my ability to maintain. Actually, that's not true. I have experienced this before. When I was initially diagnosed in 1992, I began a treatment program that was even more intense and debilitating than this one. I never got through it, deciding that the cure was far worse than the disease, which was probably true at that time. The whole treatment protocol for HepC has only within the last few years developed to the point where it's a clearly viable and effective treatment option. Back in'92 I was taking three shots a week and had absolutely no support. They (doctors) showed me how to inject myself and sent me home - no mention even of side effects (of which there are MANY) or how to cope with any of the changes I'd be going through. It was sort of - here's what we have to offer, no one knows if it works for sure, but go ahead and try. We'll see what happens. At the time I was recently divorced, and holding down a full-time teaching job, which I could not afford to take a break from. Forget it. The whole thing was a nightmare. My circumstances are much different now, thanks mainly to my wife and partner and cheerleader and every other thing I need her to be, Bev Stein. So, I'll tell more about all that next time. A note is in order: I can't focus for very long at one time, so expect these blogs to be somewhat short. Prolific perhaps, but limited, just like my life.