Chemo Capers

The Last One Standing

2005-04-21T13:50:00.000-07:00

My new address is: robwrites.blogspot.com

I've decided it's time to retire the chemocapers blog. I'm through with the chemotherapy experience, hope I never have to go through that misery again, and am in the process of moving on and hopefully recovering. The ability to record my thoughts in this blog and to have people read and respond to them played a big part in my getting through. I can't explain exactly why it was so important, only that every time I managed to sit down with myself and get my words in some sort of order, I felt better. A big piece of my healing, in life and in this illness, has to do with communication. So, there's no way I'm going to stop writing, but I am switching to a new blog address, which is robwrites.blogspot.com. It will be more of the same, and more of the changes. I'm also not through with writing about hepatitis C and the issues involved in finding successful treatments. This will continue to be a major concern for me. And the chemocapers blog will continue to exist here in cyberspace, along with all its contents (archives).

Questions

2005-04-20T09:20:00.000-07:00

Though I've gotten through my course of treatment and possibly have eliminated the hepatitis c virus, I still have some big questions about what happened. I don't pretend to have the answers, but I'll still pose the questions. Question #1: Why does this remain such a hidden, and vastly undertreated, condition? #2: Why is the treatment so harsh - and so unfocused? There are many more side effects than intended effects. #3. Why is the treatment so expensive? Prohibitively expensive if you don't have health insurance or are not in jail. #4. What does a person who needs treatment do if they don't have any personal support people? It seems from my perspective, as someone who had daily, unconditional support from my wife, almost impossible to go at this alone. Question #5: Why is there such antipathy on the part of the Western medical establishment toward alternative treatments, i.e. acupuncture, herbal supplements, etc,? And Question#6: Why do some alternative practitioners claim to be able to cure the disease with their practices when no proof of that exists and the results can be deadly?
#7: Why do some people remain in the closet with hep c ? Why is there such shame involved? #8: Why are the effects of chemotherapy routinely downplayed by the medical establishment - especially the drug manufacturers? If it's going to be bad, at least let me know what to expect.
Though I don't know the answer to these and many other questions about hep c treatment, I do know that things have improved considerably in the last ten years or so - both medically and politically, but there is still a vast need for more and better information and more humane treatment. Don't even get me started on the need for universal health care. Of all the many, many, disheartening tactics of the current Republican administration, their disregard for the basic well being and health of the populace is most disgusting and frightening.

2005-04-19T13:22:00.000-07:00

Out for a long (for me) walk in the sun, I'm beginning to get glimmers of rebirth. Maybe the term, rebirth, is pretentious, but, in all honesty, that's what this feels like - only much slower. Not that I remember what it feels like to be initially birthed. Probably not as satisfying as this new process, though both, I imagine, involved a good deal of upset. I don't truly know what to call this transition and sure don't know how it'll turn out, but the sunny day makes it appealing to plunge ahead, walk a little farther, eat a bit more, entertain some daydreams - or have them entertain me. I'll save naming things for another day. Of course, I'm not ready to get too optimistic here - it's not in my nature - but I think I'll let myself slide for today. Stick with my old hippie/Buddha mantra: be here now. Or else go take a nap. Same difference.

Expectations

2005-04-18T09:39:00.000-07:00

I'm still feeling crummy, have all the same side effects as if I were still taking the drugs. It's a bit frustrating as I am now super eager to feel well - or at least to see some of the symptoms disappear. At least I have something(s) to look forward to. Maybe by Passover, I will feel more liberated. Isn't that what Pesach is all about? Time to get my scrawny butt on out of Egypt. Don't want to seem ungrateful. I know I will soon be feeling more like my old self, it's just that I don't quite remember who that old self was. But I am grateful that I got through chemo. It was the hardest thing I've ever had to do. Seven straight months of being sick and disabled every single day. It soon becomes another reality, the reality of bearing up under constant pressure. My brother-in-law, who has his insensitive side, told me (while I was in the midst of more pain than he could ever imagine), "Oh, it's just like being in the service. You serve your time, then you're done." Well, it's not like that at all, though the being in combat metaphor might be more applicable. My brother-in-law put in his hard time in Georgia. One of the emotional side effects I experienced was unusual sensitivity to dumb remarks. But so what? Even a dumb remark is better than no remark. Or is it? This blog no doubt has been full of dumb remarks - and has no intention of withholding future ones. Ah life, what to make of it all. My goal is to keep breathing deeply. Rebuilding my body is the name of the game. And clearly, my brain needs some first aid also. I'm on it, man. Sort of. What do you expect for a Monday?

Rising Tides

2005-04-15T09:44:00.000-07:00

As of Monday, I quit taking all medications. There just didn't seem to be any point to it anymore, other than self-abuse - which, for once, was not that attractive. I've been warned that it takes a couple weeks to start feeling better and a couple months to have the poison out of my system completely. This was some powerful juju I'd been faithfully injecting and ingesting over the past 27 weeks and it's not going to simply slink away overnight. I still am affected by all the built up side effects - except one: I no longer have an ongoing sense of dread about the next injection. Tonight will be the first Friday night since October 8 that I will not shoot up, and the first weekend where I won't be flat on my back. Bev and I might even venture out to buy some new plants for the deck. I had decided beforehand that I'd have to let my little gardening tract on the roof go for this year - but now I won't have to. Dare I claim it, recovery is beginning to feel real. I'm almost to the point of being able to trust that the rug won't be pulled out from under me again. Maybe I can even start breathing again. I'm willing to go slow - what choice do I have. Once more, I will have to practice patience. But not for too much longer. The tide has turned. Pretty soon it'll be time to start riding those waves - or at least getting my feet wet.

The List - In Process

2005-04-12T09:28:00.000-07:00

Over the course of 26 weeks of chemotherapy treatment for hepatitis C I think I learned a few things:
1. Don't take anything for granted. Don't take anything for granted. (bears repeating)
2. Good health is a blessing, not a given.
3. I can endure way more than I ever thought I could.
4. Take one day at a time - even, or especially, the painful ones.
5. Support of loved ones is ultimately what gets you through.
6. When you get rubbed raw and broken down, there is another (interesting) dimension that emerges.
7. Weight loss is not always a good thing.
8. Anger (when it's not malicious) can sometimes help you get through the day.
9. It's not shameful to be weak.
10. There are a lot of people out there ready to help.
11. Sometimes (most of the time) you have to ask for what you need.
12. Your body can betray you. (See #1.)
13. Writing is healing.
14. It's okay to complain - as long as you don't assume anyone is listening.
15. It's okay to let yourself collapse - but you will eventually have to get up.
16. There's no avoiding irritation.
17. Sometimes it's the chemicals, sometimes it's just you.
18. There has to be a less invasive treatment than this - someday.
19. There's a lot that I learned that I haven't figured out yet.
20. All things do come to an end.

Moving On

2005-04-11T09:11:00.000-07:00

It's almost over! I'm still going to feel shitty for a time. The drugs won't just quietly rise up and exit my body as soon as I stop ingesting them. But soon. I still can't believe it entirely, don't know how to adjust - though I'm sure willing to try. I don't think I get to complain anymore. It was sort of nice there for a time - freedom to whine like a baby boy. Given my druthers, though, I'd rather recover. It's all new territory now, time for reclamation and reinvention. Fact is, I don't know what the hell the next step is going to be, but I sure am thrilled to be able to take it - slowly as it may need to be. It's going to be a learning experience. Chemo certainly was. But I had reached the end of my patience and endurance with that. I wonder if I could have taken anymore of it. They truly don't prepare people well enough before they start in on this. But maybe there's nothing you can do. Would I have been happier or better served if I knew all the ways my body would crumple and fail? This way, I got to deal with the constant joy of discovery. Oh, you mean my eyesight can be affected too? How interesting. Anyway, it's time to move on. There's a lot I've learned from this experience and I want to pay attention to all that; not just turn my back and pretend it was all a bad dream. There are still miles to go, but I'm getting glimpses finally of where I'm headed.

The Last Month

2005-04-06T09:16:00.000-07:00

Wow! I'm still blown away. We went in to talk to the doctor at Kaiser yesterday, mainly to discuss how best to handle the remaining six months of treatment. I was worried that I didn't have enough strength to get through the second half. Well, one minute into the conversation, he tells us there doesn't have to be any second half. "You can quit now," he said. "The research shows that for people with your genotype of this disease, doctors around the country are going with 24 week treatments, rather than the full 48 and having good results." Bev and I just stared at each other, not quite comprehending. "We don't have to do this anymore?" It felt surreal. I've had my brain wrapped so tightly around the idea of long term endurance that I still hadn't even allowed myself to imagine the end. And here it was - today if I wanted it. Dr. Willis went on to explain that he was in the minority that still believed that a 48 week treatment would provide some small degree of improvement in my chances to have a full recovery, but given the toll that these chemicals had already taken on my body and would continue to take on a now weakened specimen, that I should decide how much longer I was able and willing to continue. "What do you want to do?" he asked. "I'll go to 30 (weeks)," I blurted out, based on nothing more than the instinct of the moment. We were already into week 26 and I figured I could make four more - one more month. Amazing! The doctor agreed, said I had done a "really admirable job" and that was that. Bev and I walked out still feeling completely pole axed. How could it be over in one more month? We weren't prepared. As weird as it might seem, this past six months of misery had become our norm and in some twisted way, we wanted to hold on to our chemotherapy conventions. Of course, it didn't take too long to get over that aberration - and the new reality began to take hold. Or the coming reality. We could go back to having a life, going out to eat (and enjoying the food), planning a vacation, riding a bicycle, etc., etc. We've got a month to get used to it. And then, I'm told, that it will take another two months for the chemicals to be out of my body and to start feeling "normal" again. Then the big test is still seven months down the road, when I'm tested to see if the virus stays undetectable. If the dirty little bastard bug comes back, well, so be it. We (me and Bev) definitely, definitely, gave it our best shot and there won't be a moment's regret on my part for not going the full 48 weeks.

A New Week

2005-04-04T09:08:00.000-07:00

Moving on, moving on. Another weekend behind me. And looking forward to a brief escape to the coast at mid-week. Bev's got a birthday coming up next week. We'll have a small party even. And Jessie is coming in from Alaska to visit for a week or two. So, life does go on. I guess that's all you can ask - and that's a lot. Even better, my young friend who was diagnosed with a brain tumor and just went through his second surgery, looks like he will be okay. The surgeons managed to get most of it - though he still has a two month run of radiation treatments to endure. I'll keep praying for him. Let's leave it at that for now.

The April Fool

2005-04-01T09:41:00.000-08:00

Happy April. The months do keep passing by, don't they. And years are just a blink, especially looking back from here. I can remember the births of my daughters as if they were yesterday - and they are now 29 and 34. I guess I'm trying to convince myself that the rest of my chemo sentence will pass quickly and that I'll look back on this year somewhere in the future and no longer be distressed. But who knows. If I've learned anything about time it's that I don't know a thing about it. I've had days that lasted a year and years that lasted a moment. I know the passing of time makes me sad, reminds me of how temporal it all is. Why struggle? I guess it's just built in, part of our nature. You don't get to choose about everything, you know. Fact is, you don't get to choose about most things, though there's this fantasy we harbor that our lives are in our control. Do the right thing and you'll succeed. Tell that to anyone struggling with a major disease or living in a third world country or in poverty right here. Tell them about all their good choices. It's enough to make you wave your fist at the sky. Or to be humble. I go back and forth. Screaming and yelling at God one moment and looking for redemption the next. Then, I've always been a screwed up individual. And proud of it. Anyway, I'm glad I'm alive - very glad. Maybe that's one thing that being vulnerable does for you.

The Big Boost

2005-03-31T09:37:00.000-08:00

Well, yesterday was a very big boost for me. The blood test results came up - not detectable for hep c virus. Pretty damn cool. And such a relief. I didn't realize how tightly I was wound waiting for this info. When I couldn't stand the anxiety any longer, I called my case manager at Kaiser - "just to check in and see." She had promised to call me the instant she received the results, but she shuffled through the papers on her desk and there the results were. I wonder how long she'd had them. That irritation aside, the news struck me like a hammer blow. My reaction surprised me in its intensity - but why the hell shouldn't I have been emotional. A possible death sentence was being commuted. But that reality was something that I had been keeping at a long distance and now the true seriousness of the past six months (and the next six) was right in my face. I admit I was sobbing. And the tears didn't quit as family and friends got the news and phoned and e-mailed. Their joy sometimes seemed greater than my own. I was very moved and so thankful to have all this good, loving support. Of course, the first person I called with the news was Bev, who was out of town, and I knew waiting as anxiously as I had been. There were not adequate words to express our feelings, and there didn't need to be. Bev has shared this experience with me from the git and I know she'll be there till the end. I am very blessed. So, onward and upward. This has to at least get me through another month or three.

Mo Bettah

2005-03-29T09:45:00.000-08:00

I feel better than I did yesterday, though no less confused about how to get through the rest of my treatment. I think I got so upset because I had finally reached the 24 week, half way point and nothing had really changed. All I got to do was go on to week 25 and more drugs. I was deflated. And angry. But I'm not sure who I am angry with. None of this is the doctor's fault, or the fault of the medication, or the harshness of the treatment. There's not some conspiracy out to get me. In truth, everybody wants me to get well and this protocol, as far as I know, is the only way to get there. My daughter tells me that the liver is the organ most associated with anger. I can believe it. And the fact that I've been infected with this disease for probably 30 years now might explain some of my past unreasonable rages. That and my own ego. But that's a story for another day, another blog. I am beginning to get a sense of some writing I want to do when I'm better able to concentrate. I feel like I'm restocking my material, and sharpening my perspective. See that, there are positives. One way or the other, I'll come out the other side of this. Then what?

Weary

2005-03-28T08:53:00.000-08:00

I'm feeling angry and depressed this morning. Another hard weekend behind me, but what's the difference. It's not like I'm going to feel great today - or tomorrow, or the next day. Here I am facing another six months of this sickness and I don't have the reserves of strength, either physical or mental, to deal with it. Everyone tells me how well I've done so far, how I've been so strong. But that's never the way I've felt. I've just been gritting my teeth and holding on. When I started back in October I was in pretty good physical condition - I'm definitely not now. I don't have another 35 pounds to sacrifice for the cause and there's not a single part of my body and soul that doesn't hurt. And I'm sick and tired of pretending otherwise. I'm weary of being a good trooper, a good sport. I'm sick of putting on a front for my family and friends. I can't pretend to be cheerful anymore. I'm still hanging on, but I am definitely at the end of my rope with a big knot tied there. Am I feeling sorry for myself? You damn well better believe it.

Friday

2005-03-25T12:20:00.000-08:00

I'm in a holding pattern. Just waiting for the results of my PCR test - that's the one that determines the presence or absence of the virus. They have to send it to a lab back in Virginia and I have to wait 7-10 days. Nothing like a little anxiety to add spice. Oh well. I won't think about it. What's the point? One must be a fatalist in such situations. Though I do have some sort of weird trust in my fate. Maybe I figure I've paid enough dues by now that I deserve some good results. But I also know that that is tainted thinking. Instead (of thinking) I'm going to listen to my new Sound Design table radio. It's the best thing I've ever bought (for those who like hyperbole) - great reception and sound, plays CDs too, so I can listen to my audio books. And it looks very cool - sleek, like it's from the future - Not the Jetsons, but Buckminster Fuller future. And b-ball keeps going - though the Huskies got thoroughly outplayed and outgunned and out of the tournament. I'm afraid to claim another favorite for fear of jinxing them. I've been on my own a lot these past couple weeks - with Bev traveling hither and yon. Makes me even more grateful for her support and even happier when she returns - as she will this evening. Bev worries about my well-being when she's gone far more than I do. Fortunately, both of us are pretty strong people and seem to have a capacity for endurance. And that's where I'm at as Friday evening approaches. "All in all," as W,C, Fields, supposedly said, "I'd rather be in Philadelphia." Don't ask me what that means.

Musings

2005-03-24T09:34:00.000-08:00

Is it possible to be a decent human being and be a Bush supporter? Given the track record - the deceit, the manipulation, the arrogance and veniality of these people - well, I've got my doubts. I think I have a better chance surviving chemo and hep c than I do surviving this administration. I guess the point is that life goes on - whatever the challenges. But sometimes you can push it too hard. Selective amnesia is very helpful in these times. So are any and all distractions - especially entertaining ones. The NCAA Sweet Sixteen Tournament begins play today. I've got a couple of favorites - Duke and the UW Huskies. Then there's always the cinderella team that comes out of nowhere to surprise everyone - maybe Villanova (my homeboy team). The games tend to be close and exciting and they play with every bit of energy and speed they can muster - leaving it all on the court. (Think the exact opposite of the Trailblazers.) Anyway, that's a lot of distraction going for the next few days. It does weird me out to get so plugged into the tube. I sometimes feel like it's sucking out my brain cells, which it probably is. But this is not the time or year to stand on principle. I'd be better served perhaps to read a good book or to engage in a lively discussion about the Arctic Wilderness - but what's the point. My eyes hurt when I read and my head hurts when I talk about politics. I can't even stand The West Wing anymore. It seems divorced from reality - politicians with a conscience. Ridiculous! And liberal democrats are in power? Give me a break. Star Wars seems more believable. Do I sound bitter? I'll try to stop. It takes too much energy. One is better off laughing. I'm just trying to maintain my energy and my sanity, trying to stay strong enough that when all this political and personal dis-ease is done with, when all this seems like a sad dream, I can go on.

Death to the Virus

2005-03-22T09:02:00.000-08:00

Tomorrow I go in for my 24 week blood letting. I'm beginning to feel like a pincushion. But this is the big one. One of these tests will determine whether the Hep C virus is still present in my system - or if it is undetectable. Obviously, we're hoping that the latter is the outcome. If the virus were still around after this six months of bombardment, there wouldn't be much hope for eliminating it ever. It's a persistent little bugger. But even if the test results come back the way we expect them to, "non-detectable" leaves a lot of room for interpretation. Non-detectable is not the same as gone, vanished, stomped to smithereens. It might just mean that the virus is still hiding out some place that modern medical science hasn't figured out how to get to - yet. Six months after the full treatment is over (one year from now) they will do that same blood test and if the virus is still not showing its ugly little face, then I would be considered, dare I say it aloud, cured. But that's a long way away. I still have to keep taking things step by step, getting through one day at a time and trying to maintain my physical and mental well being in the face of this chemical onslaught. I heard Gene Wilder being interviewed on NPR the other day. He was talking about watching his former wife, Gilda Radner, battle the cancer that killed her at age 41. He called her disease, "that dirty son of a bitch." Maybe that's over personalizing it, but I think I know how he felt. Every day is a battle. And lots of days I don't know if I'm winning or losing. Hopefully Wednesday's results ( which I won't receive until the week after) will let me know that I'm still in the fight. No way is this boy ready to give up.

Publish or Perish

2005-03-21T10:25:00.000-08:00

I am having technical difficulties. It makes me want to scream. In fact, let me take a moment here and do just that. AAAAGGGGGHHHHHHHHH!!!!!!!!! There, that feels better. My first blog this morning disappeared into cyberspace, never to be heard from again. Yes, this blogging is fun and convenient, but can also be frustrating. As can, televisions, CD players, and radios; all of which went on the fritz for me this past weekend. How am I supposed to be a good shut in when I can't even watch the tube - especially during March Madness and the fourth week of "The Contender." Give me a break. Okay, that's all I'm saying for now. I'm too wired to write. And I've got to see if this one will publish - though I'm vaguely embarrassed by its content - or lack there of. Bye.

Shabbat

2005-03-18T09:36:00.000-08:00

Ah yes, I hear the weekend express rumbling toward the station. Friday night approaches with all its dreadful physical implications. (I get my interferon injection on Friday.) I think it may actually be worse anticipating the shot and the resultant side effects than the reality of it. Reality for me is a bit fuzzy these days. It was probably a mistake for me to begin treatment on a Friday night. Once I started down that road, though, it was hard to turn back. All the other aspects of treatment get scheduled around the starting day. But it has at times ruined our sense and enjoyment of Shabbat. Now, instead of feeling a sense of peace and fulfillment when lighting the Friday night candles, the associations are often anxious and fearful. I know that on Saturday I'm going to the depths. Sometimes we don't even bother to do the rituals, don't say the blessings, don't welcome in the sabbath. I feel torn. It's only been within the last few years that I've found my way back to my religion and faith and I don't want to lose it again. But I've got a bit of a grudge going on now. It's hard to stay positive, to look at the up-side. Sometimes I wonder what God has in mind. Sometimes I get really pissed. Last week I found out about a friend, still in his twenties, who has a brain tumor. A good kid, an aspiring writer. He's due for a second surgery on the 28th. It ain't fair. Why so often punish the innocents? (Among whom I do NOT include myself.) And, I know, I know how no one ever promised that life would be fair. But that doesn't mean I have to like it. And it doesn't mean that I'm not going to pray my ass off for this young man. It just means that sometimes it is totally overwhelming how much life sucks. And then you go on.

Let it Rain

2005-03-16T09:44:00.000-08:00

I feel strangely relieved that the sun is not out today. Maybe it's not so strange. What the hell, we're still a week away from spring. Growing up on the East Coast, I always assumed it was natural to have four distinct seasons. Winter was cold and summer was hot - that doesn't seem to apply any longer. I'll admit that I don't truly understand global warming, but from what I've observed in the last decade there is something majorly askew. The planet is losing its grip on stability. And it affects us all, I believe, both physically and emotionally. All those pretty flowers that we've been glorying in for the past few weeks are likely now to shrivel up. They were tricked into blooming too soon. Perhaps we were too. Hopefully, now we can settle back into a more normal pattern. Enjoy the freshness of the rain and the cool air - though it's probably too late to replenish the snow packs that provide our water the rest of the year. Why am I going on like this? Such complaining about a few sunny days. You can't win for losing, you say. All I know is that I've felt, in my gut, that something is terribly wrong. Perhaps, it's only my own chemistry that makes me uneasy. But I think it actually goes deeper. I've found in going through chemo, that I do have deeper emotional reactions than I did before, but I've also found that those reactions are not entirely about the drugs. I'm disturbed by these aberrations in the weather because of my own heightened sensitivities and because there's clearly something in me that doesn't love a sunny day (which concerns me) and I'm disturbed because these patterns are truly signs that our environment is breaking down in some serious ways and that the bill is shortly coming due.

Endless

2005-03-15T11:56:00.000-08:00

I'm approaching the half way point in treatment. Next week will be the 24th of the proposed 48. I sometimes can't believe I've gotten through 6 months of this - and equally can't believe that I'll be able to get through six more. I guess I'll keep doing what I've been doing so far - hanging in. Maybe the downward slope to the finish will be easier than the uphill one. I've always maintained an odd mixture of despair and endless hopefulness. I can hold both at the same time. That's about where I'm at now. It will be interesting to see if my mindset changes after I get through this. I would like to think that I might gain a new appreciation for life. It feels like this is already happening. Certainly, I have an enhanced sense of the tenuousness of it all - and the fragile beauty. On the other hand, will I be despondent if after all this effort, I am not successful in eliminating the virus? Who knows. I'll at least know that I've taken my best shot. All that is irrelevant anyway - just the idle wanderings of an overly medicated brain. The only thing that counts is getting through today - and making the best of it. There are plenty of roses left to smell.

Getting The Word Out

2005-03-14T09:04:00.000-08:00

The Omega Institute has for years now been running various arts and culture workshops from their campus in upstate New York. They have a reputation for bringing the very best teachers, artists, and thinkers in to offer classes. In thumbing through their most recent catalog, I was pleased - and surprised - to find that Omega is this August offering a 3-day workshop titled, "Hepatitis C, Exploring Choices in Care." I know a lot of people will benefit from this. When you are first faced with the reality of learning you have HCV and require treatment, it can be more than a little overwhelming, not to mention frightening. It sounds from the description that this Omega workshop will cover all the current care options available. "This training is an opportunity to begin replacing fear with information." An MD (a hepatologist), a naturopathic physician, and a Chinese medical practitioner will all be presenting. And people who are facing these hard choices and their families will be able to connect with others facing the same dilemma. There has been a serious lack of information about Hepatitis C for too long now. The disease is epidemic, affecting 3 to 5 million Americans and more than 170 million worldwide. The fact that Omega would recognize the need for such a workshop is perhaps a sign that this lack of public information is starting to change. Contact Omega at 800-944-1001 or eomega.org

Today

2005-03-11T09:10:00.000-08:00

We may take a drive to the beach today. I'm not sure I really have the energy, but I'm going to give it a shot. I want to see the ocean and walk on the beach - those are my favorite things in the world. And all I have to do is sit there in the passenger seat while Bev drives. But it still will be difficult for me - I don't even want to get into all the reasons why. They're all physical symptoms and boring. So, heck with it. I don't want to give up on something before I even try. The weather is still weirdly perfect - seventy degrees in what is, may I remind you, still winter. It feels more insidious every day. The whole world is a mixed up, shook up mess and I'm right there with it. You gotta push on. Live life to the fullest - no matter the state of your health or the state of the state. Which doesn't mean that it's always fun - only that it's all we've got. Jeez, all that for a drive to the beach on a sunny day. You'd think I was setting out on a cross country trip on a skateboard. It's a matter of perspective. What's normal to you . . . The things I want the most are the activities that are most routine - the events that I wouldn't have even had to think about before. I'm not looking forward to a trip around the world when I get through chemo - I don't have the capacity to even imagine myself doing that - I'm looking forward to walking up our front steps without wheezing. I can't do justice to fantasizing about a four star restaurant, but I can imagine finishing a whole meal. And yesterday, for some reason, I had a flash that I wanted to go fishing. Sit in an old rowboat out on the bay and drop a hook over the side. Catching anything would not be necessary. Yeah, so all that yearning - and lots more, But today, right here, right now, which is all I've got, I'll be delighted to have my sweetie drive us out to the coast.

Exposure

2005-03-09T09:02:00.000-08:00

It's sunny out - again. So? Enough already. I've given up on snow - but a nice hard rainfall would be refreshing. Yesterday I wore only a tee shirt on my neighborhood walk - and I must admit that felt great - my skinny pale arms out in the world again. I've started a mild, very mild, exercise program - lifting light, very light, dumbells every other day. I'm saddened at all the muscle I've lost. My arms look like withered old branches. I get my degree next week for having completed the six month course in becoming feeble. Who knows what kind of progress I can make in my studies of deterioration in the following 24 weeks. Perhaps, a post-doc in kvetching (see, I used it correctly this time). Actually, lest I give anyone the wrong impression, I have not been a major whiner through the first part of this ordeal. Beverly, I believe, would attest to that. In fact, she would probably also attest that I keep too much of my suffering to myself. She's (strangely) invited me to complain more often. Now what other wife or husband would make that offer to their spouse? That's where this blog comes in handy. Somehow, in writing mode, I can freely say the things I hold back at other times. In writing mode, I have no shame - and no reticence. This has been a coping mechanism for me even before this period of sickness. Writing, and in more recent years - performing, has always been a way for me to tap into that raw core of myself that wants exposure, that wants release, and that wants attention. It's probably not the healthiest way to process one's feelings, but you use what you've got. It's worked for me.

Living With It

2005-03-08T09:16:00.000-08:00

I'm still surviving. I think that's what it comes down to now. Hanging on, getting through one more day, trying not to look too far down the road, but realizing there is an end to that road. What worries me is that I might lose myself along the way. On a daily basis, I now feel so different than I did just six months ago. Besides the physical symptoms that make my hands shake and my head ache, there are also the emotional and psychological impacts that all this is having on me. Sometimes I feel depressed or angry, sometimes I get irritable, but the most distressing emotional side effect is when I don't feel anything at all. That lack of affect is created from a mix of boredom, pain, and immobility. Throw in a handful of guilt and I've got the perfect recipe for zombiedom. Why look at something that you have no control over? Inertia, thy name is Rob. Oh well. I guess it's all part of the deal. Now who exactly was it who made this deal? Me, you say. Yeah, I guess that's true. The other side of the coin is that there have been many moments of insight for me along this path. And many moments when I've finally realized how damn fortunate I am to not have to go through this ordeal alone. And far from feeling isolated or lost, I feel very connected to the larger world of people and their trials and travails. Hey, we all suffer. We're up one day and down the next. Sure, this is much harder than anything I've ever experienced, but it's also been instructive - and even inspiring. And if I can live through it without giving in completely to the ennui and anger, I'll be a better man for it all.

My Good Day

2005-03-07T09:11:00.000-08:00

I had a somewhat better day on Sunday than I've come to expect. It was a bit shocking. I've gone so long now with the mindset that every day is going to be miserable that when one comes along that isn't so miserable, I almost don't know how to deal with it - though I am definitely willing to learn. Usually it takes a full 48 hours from the time I get my interferon shot on Friday night to recover just from that drug - so Sunday if I can get through the sports pages before giving in to headaches and malaise I figure I'm doing well. But yesterday, my head ached only mildly and I read the whole paper and part of the N.Y. Times. And then we took a drive to Sauvie Island and walked on the beach. Later I sat out on the deck and soaked up some rays. Though it may not sound like anything special, that's a lot for me - to have enough energy to do even that much. But the weird thing is that I didn't really notice I was having a good day until the day was almost over. And I might not have noticed then, except my daughter called from Alaska to ask how I was doing. I surprised her, myself, and Bev (who was listening in) when I responded that I'd had a pretty good day. Jessie asked why - and that stumped me too. "Maybe the Procrit," I told her, searching for an answer, maybe just this sunny weather we're having. I don't really know." Then we talked about what Jess was doing up in the still frozen North and I got to be Dad for a bit and forget about my condition altogether. I sure wish I could forget every day. Maybe my good day was just a fluke. I haven't had many of them since I began this over 150 days ago and I don't imagine that I've turned any corner. There's no corner in this treatment. You keep on taking the drugs and they keep on piling poisons up in your body. Other people I've talked with, including my doctor, are pretty clear on that point - you don't get better, but you can get through it. So, I'll simply be thankful for this brief respite and keep the door open for the possibility of more. Maybe recognizing the good moments, can help me get through the awful ones. I'm not Pollyanna, though. I don't expect miracles to shine down on me from above. The headache and weakness are back today and I feel like five miles of bad road. Why is it though, that I'm more able to recognize the tough days than the easy one?

Mr. Sunshine

2005-03-03T09:07:00.000-08:00

I can't help but feel that spring is here - even if it's not. It's been sunny now for so many days in a row that I feel like I'm living in San Diego. I miss the rain. It suits my mood better than all this brightness. Maybe I'm just a spoilsport. If I don't get to feel good, no one should. But I don't truly feel that way. Being sick for so long has made me more appreciative of other's good health and good spirits. God knows I don't want others to have to feel like I do. Seeing people out riding bikes and going for hikes in Forest Park reminds me that I used to do those things too and that I'll do them again. The future has been hard for me to imagine lately. (That is the nature of the future, isn't it.) Since I feel so worn out and weak, the future is limited to getting through the next day or up the next flight of stairs. And the only real future goal I have room for is the goal to get through this treatment regimen. Some days ( a lot of them) I have my doubts about my ability to do even that. A doctor friend recently told me that all these harsh medical protocols are a balancing act: How long can the treatment continue without having the patient break down. More people stop chemo for Hep C than make it to the end. When your life and health get altered so profoundly, and the promise of a cure is still uncertain, it becomes a mental balancing act to keep jabbing that needle in your belly. Oy. Enough already. Shut up, Butch. Stop kvelling. Go out and enjoy the sun. You've got enough rain to hold you.

Hooray For Martha

2005-03-01T09:04:00.000-08:00

Martha Stewart gets out of jail in a week. She went in on October 8th - the same day I started treatment. In some weird way, I have felt empathic with her. Of course, now she gets to spend the rest of her sentence under house arrest while she's making millions of dollars. What the hell, I still like her. As far as I know, she's done her time without complaining and even had the respect of her fellow jailbirds. Obviously the woman has some core strength - she's a mensch. That's how you get through these things. You grit your teeth and take it on. I'm sure Martha has had many dark nights of the soul as well, but you have to go with that too. Martha Stewart ain't no hero, don't get me wrong. She, in all probability committed some financial crime or other. Who knows what goes down at that level and who is trying to do in who? But, you can commit a string of house break-ins in this city, steal cars left and right, assault your girlfriend, and you'll do less time (if any) than Martha is doing. Aren't we glad we live in a democracy.
So I'll have a smile on my face when Martha walks on March 8th. Part of me will feel like I'm busting out with her. Only part, however, the rest has to serve another 6 months.

The Weekend Report

2005-02-28T09:01:00.000-08:00

Well, we wasted three and a half hours watching the Oscars last night. But Chris Rock was amusing and punched holes all night in Hollywood puffery, so what the hell. And Clint and "Million Dollar Baby" walked away with all the prizes - except for best actor, which deservedly went to Jamie Foxx for his role as Ray Charles. Foxx, without a doubt, made the most heartfelt speech of the night and cried as he spoke about the influence of his grandmother. He had me going. Sort of rescued my week-end, which was mostly spent collapsed on the couch, full of vicodin, listening to NPR. I'm hoping some day for better Saturdays. A minor goal: to be able to go to Saturday Market with Bev by summer time. That was one of our favorite outings. Now we take drives - when I feel up to it - with Beverly at the wheel. I've mostly had to give up driving - though I can still do it in a pinch. Sort of. It's not that I don't have the coordination to drive a car, it's more that my tracking system feels overloaded. Too many cars coming in too many directions, much too quickly. And where the hell am I supposed to point this hunk of metal next!! I feel like I'm moving in slow motion and the rest of the world is on fast forward. But we have found some nice routes for our Sunday drives. Sauvie Island is a favorite, as is the Ridgefield Wildlife Preserve. Yesterday we went to Fort Vancouver - stumbled on it, after driving around downtown Vancouver. Yes, there actually is a downtown Vancouver - and it looks like It's getting to be a pretty cool place. Fort Vancouver has all these nicely restored Officer's Quarters, which have been turned into townhouses and restaurants and shops. And there are plaques in front describing the history of the place that Bev read out loud. So, all in all a regular week-end. At least as regular as is manageable in this basically unmanageable period of my life.

Moving On Up

2005-02-25T09:16:00.000-08:00

Finally got some positive results from the Procrit. Procrit is the newest drug I've been self-injecting; it was prescribed to deal with my dangerously low level of red blood cell production and the resulting anemia. My latest blood work results show that my hemoglobin count has come up slightly, but steadily over the last 3 weeks, which means my body is producing more red blood cells. It's still so low that I can't quite feel the difference, but I'm working on it - trying to imagine myself more energetic, or at least less unsteady. It felt really good to have some positive news in this ongoing petri dish experiment that is my body.
Tonight we're going to see "Death of a Salesman." I wonder if I'll have the same emotional reaction to it that I've had before. Guess it depends on the acting, but also I'm not sure I still have the same empathy for Willy Loman. Now I want Willy to have more self knowledge - but then he wouldn't be the character who has made me cry in the past. Maybe I'm just scared that I will relate too much to Willy's blindness and to his inability to give his family what they need. Art is dangerous, that's for certain sure. After we get home from the play, it's injection party time. Old hat now, but never fails to freak me out on some level. That's all I got.

Down The Road

2005-02-24T09:36:00.000-08:00

Perhaps it's a good sign (I'll take whatever I can get), that lately I've been wondering what I'll do with my life after this treatment is all over. Up until now it's all I've been able to do to deal with my immediate experience. My job has been solely to get through this torture. And it still is, but peeking around the corner, a way down the road, is this concept of having a life again and wondering what it might look like or how I want to change it from what it was before. I haven't come up with anything specific yet; it's more of an abstracted pondering. And my mental processes are such right now that I no longer have a clear idea of who I am. I know that probably sounds weird, but I am simply not myself. I don't know what I will be able to do, but even assuming (as I must) a full recovery, I'm still not quite able to see the shape of the future me. What sort of work would I want to do? Going back to teaching is not appealing at the moment. The one positive thing I can say about 11 months of chemo is that I won't have had to read and grade a single dumb ass student essay during this time. I think I've put in my time in that arena. There's lots I want to write about, but again from this perspective I don't know what it would be. About the closest I can come up with now is that I want the re-born me (if that's the outcome) to do things that are helpful to other people. Can I be more vague? Maybe it means being an activist for hep c treatment and accurate information, maybe it means simply making myself available to other people in ways that I haven't allowed myself to be in the past. There's something inside that feels different - and it's not just the chemicals. Maybe what I'm experiencing is the glimmer at the end of the tunnel that all my family and friends keep pointing out. For now, though, I'm the one having his day in the barrel. And that's about all I can handle. Yet, it's good to note that maybe there is still a me who can climb out some day and kick around and have a new life.

Still Hanging On

2005-02-22T09:13:00.000-08:00

No newts is good newts. I got no newts - only an expansive stretch of more of the same. How much can the body take? And when does it stop being worth it? Like I said, I got no answers. I'm in week 20, so my next goal is 24 weeks, the halfway point. It's then that I'll see if I've eliminated the virus from my system. It's a crucial test, shows whether all this chemo is effective. If the test were to show that the hep c was still rampant, there would be no reason to go on any further, which though appealing on many levels, is not the outcome I want. And even if I the blood test comes back saying that the virus is out of town or has its bags pretty well packed and is just waiting for the Airporter, that means I've got to keep doing this stuff for another six months. You can't win for losing - or vice versa. I'm getting punchy from all this sickness and symptomania. I feel like I'm not myself any more. But there will be an end. At least that's what they tell me. I just need to get it a bit closer before I can see it.

Alternative Treatments?

2005-02-21T09:38:00.000-08:00

I'm glad it's Monday. I used to dread Monday morning: back to work, long week ahead and all that. Now, I cherish each weekday and get increasingly anxious as I approach the week-end and its injection of poison. Life does turn you around. I'm going for my weekly acupuncture treatment today. The whole process makes me feel better, more relaxed; it's an hour when I get away from my drug infected self. I don't think acupuncture provides a cure for Hep C, but that's not why I go. What I'm being treated for now is not the disease, but the side effects of the chemo. I wish something gentle and spiritual did work. I researched all the alternative treatments before I set sail on this course. And while there are many protocols in different fields of alternative medicine, none can claim a proven record of a cure. Once the liver is compromised and the virus is still tunneling away, you have to take radical action. I think many people with Hepatitis C get misled about this. Since one can go for many years with very few symptoms evident, people think they're safe, that the virus has gone into remission. That's a big mistake. All the milk thistle and licorice root in the world is not going to stop this virus. And whether you feel okay or not, the disease is progressing. It may take 20 years to get to a point where the liver shuts down, but it does get there and the end stages are not pretty (from what I've read about them.) The only way to accurately determine the stage of the illness is to have a liver biopsy. And yes, it's just as unappealing a process as it sounds. A very long needle is plunged in to . . . I won't go on. I felt perfectly healthy and vigorous when I had my biopsy. The results (which arrived in the mail on my birthday) told me differently. I had stage four cirrhosis of the liver - the highest level possible. All of a sudden I didn't feel so good. And all the alternative treatments I had tried in the preceding years and all the self-care didn't amount to squat. Now, I do believe that acupuncture and other non-Western forms of medicine are effective in many, many situations. I'm particularly appreciative of the time alternative practitioners take with their patients, and, even now, acupuncture will help me get through my Monday and increase my appetite. But when push comes to shove, as they say, I felt I needed to push back with all the heavy duty weapons I could find. Acupuncture and herbs are a gentle cure; this is not a gentle disease.

Getting the Groceries

2005-02-18T09:22:00.000-08:00

Another shiny day here in Portland. I'll definitely go out for a walk - it's about my only exercise now, and calling it exercise is even a bit of a stretch. More of a shuffle than a walk, but for me it helps. I used to be a gym rat, now my muscle tone has receded further than my hairline. I'm surprised when people (who haven't seen me for a few months) tell me how good I look. Maybe we're all still in thrall to "never too rich or too thin." Models have to look like they're about to expire from malnutrition or from shooting up heroin. Well, I guess I've achieved the "look." And believe me, you don't want it. Skinny does not translate to healthy, nor does fat, but given the choice right now, I'd opt for the latter. At least there's some fun involved. I'm going to work harder to put some weight back on. I can't keep going down. It's a matter of simply having enough fuel to function, enough gas in the car, groceries on the table. Unfortunately, it's not that simple, though. I have zero interest in food - at least most of the time, and when some special treat does pique my interest, after the first couple bites, I have to force the rest down. Soup sometimes works out better than other foods. All those Jewish moms are right - chicken soup is still the best medicine. Anyway, so on my agenda for today is walking and eating. Bev and I are actually going out to dinner - something pre-chemo we used to do frequently. Maybe I'll even order dessert - and eat it all by myself. So there! Then when all that's done, it will be time for my Friday night injection. Not a pleasant scene. I've lost track of my injection sites. (I'm supposed to be moving them around. Can't inject the same site for seven weeks.) Then Saturday and Sunday tend to disappear in a swirl of fever. Ah, the good life. I'll be back (after a fashion) on Monday. Being this messed up and weirded out has become my norm. I don't think I like that I'm getting used to it.

Now Pass the Chopped Liver

2005-02-17T09:42:00.000-08:00

I am sitting here at my desk wearing a baseball cap emblazoned with the name, Katz's Delicatessen. The cap was enclosed in a package that just arrived at our doorstep from the aforementioned Katz's in New York. The package also included an assortment of Katz's world famous knishes and, of course, fat kosher pickles. Though there is no return address other than Katz's Deli, I'm sure this fabulous present was sent to me by my nephew Scott. When we visited the East Coast last summer (before we knew that I would have to start on chemo), Scott and his wife Sarah took us on a walking tour of the Village and the Lower East Side, culminating with a meal at Katz's, one of those NYC delis that have been around for generations and continue to serve food that has been the same for all those generations of New Yorkers and food that you can get nowhere else on earth. As we sat there gorging ourselves that summer afternoon, I had no inkling that in a few months I'd be almost an entirely different person. What I do remember thinking at that time was how lovely it was to be alive and vibrant - we were all happy, feeling adventurous, - and hungry.
Like I said, things are pretty different now, and after Bev and I stopped bouncing up and down with excitement and I looked at the size of these Katz's Knishes, I felt a little overwhelmed. Big food does that to me these days. That notwithstanding, a knish (well, maybe a half) is on the lunch menu for today, along with a nice slice of pickle. I'm still continually amazed at the loving support that has come my way through these trying times. A bit of a cynic to begin with, this outpouring of love and care I've felt over the last five months will no doubt change me forever. I'm not saying that dealing with a serious illness and chemotherapy for 48 weeks is something I would recommend, but there certainly has been much that I've learned so far, much growth that would not have occurred otherwise. Try as I might to maintain my stuffy little distance and pretend to take care of myself, I see now just how sweet and generous people are and just how open to new feelings of all sorts I have become. Like I told Beverly, there's no way I can say thank you enough. But to all those folks out there in the world who are struggling, I share my good fortune and my love with you. Anyone for a potato knish?

Time For Change

2005-02-15T09:24:00.000-08:00

It's tough when my sweetie, Bev, is out of town, as she is this week. As a political consultant she often has to travel around the country. This month it's Lansing, Michigan, of all places; she's working with the legislature there. And I'm here by my lonesome. I do okay while she's gone, at least I have so far, but there are times when I get lonely and times when I'm a bit nervous, imagining various catastrophes. What happens if I get one of my dizzy spells and fall down the steps? I think Bev worries about those sort of horror fantasies more than I do. And she's brought her organizing skills to bear on this issue by arranging to have many of our friends come by while she is gone and bring me dinner and spend a little time hanging out. I think the real intent is to make sure someone checks on me at least once a day. I'm stunned at times that I have the great good fortune to have such a person in my life. And to have friends and family who care about me and support my effort to get through this (including people out of town who call and check in. Those calls can make a huge difference on days when I'm down and feeling sorry for myself.) I don't know how people get through this sort of long term treatment for illness on their own, though I know that many do; many have no choice. The first person I talked to when I was about to begin chemo was a woman who had just finished up the 48 week program and was none too chipper about it (which I now, of course, completely understand). She had gone through the process on her own, no primary support person. Her adult son would stop by "once in a while", she said. She also told me that she spent the entire 48 weeks in bed, getting up only to take care of basic needs. The only thing she bought for herself during that almost one year of torture were new sheets. Once, on her way to the mailbox, she fainted and no one was there to pick her up. No wonder she was bitter. What kind of "cure" is that? But people do what they have to do. Including going to work every day through treatment because if they quit or try to take time off, their health insurance might disappear. Most people in this predicament, don't even tell their employers that they are undergoing chemo treatment for hepatitis c, because then they would risk being fired - and probably for good reason. From my experience, chemo patients shouldn't even be driving cars, let alone doing any sort of work that requires more than ten minutes of sustained concentration. I don't know what the answers are, but I do find myself increasingly frustrated with the level of care (or non-care) that is available to most people. It's the squeaky wheel syndrome on a societal level. And until hep c advocates and patients start squeaking, start becoming activists for change and for the dissemination of information; the situation will stay the same.

The Existential Joy of Complaint

2005-02-14T09:05:00.000-08:00

I'm not sure how much longer I can handle this torture treatment. I'm in to the 19th week now, almost five months, and in a way I'm amazed I made it this far. But I'm really beginning to have my doubts about whether I can make it through another 7 months. Time does go by and , under ordinary circumstances, a year is not such a long time. There are a number of years I can't account for at all. But I doubt that I'll forget this one. There's no sense complaining, but there's no sense not complaining. Circumstances stay the same either way. I wish I had been told more of what to expect when this treatment began. At the orientation class, the nurses spent most of their time explaining how to deal with dry skin and what sort of shampoo to choose - as if those things were the major concerns we would have to deal with. No one said anything about anemia that doesn't allow you to walk up a flight of stairs without wheezing and no one said I'd be flat on my back for two days after the interferon injection. I'm pissed that these things get played down. I suspect that a lot of patients quit this treatment, partly because they are so shocked that that the symptoms and side effects are so debilitating. Dry skin is the least of my damn problems. Actually, complaining does make me feel a little better. I'm always worried that I'll come off as a whiner when I write about my experience. Oh well, I've got bigger fish to fry - whatever that means. I don't even like fish - especially now. Not that I ever did. I don't much like any food. I miss the simple pleasure of eating. (Though I don't actually remember what that pleasure felt like.) I even miss some of my old neurotic eating habits. I'd be happy now to be able to stuff my face with a pint of Ben and Jerry's New York Super Chunk. If I make it to the end of chemo, I'll probably turn into a fat guy. That sounds comforting at the moment. Now my big decision is whether or not to keep buying increasingly smaller size clothes. I'm shrinking away, withering up. I see my father in the mirror. Well, enough is enough. Just had to vent there for a bit. I'm still trying my best to make it through. I won't pretend for anyone that it is easy and I won't not call out when I start to fall. But I will keep putting one foot in front of the other.

American Drivel

2005-02-10T09:59:00.000-08:00

Watching television has been helpful to me in this period. I need activities where I don't have to expend much or any energy. TV fits the bill quite well. There are certain programs Bev and I like to watch together and even more (way more) that I look at by myself. Most of these shows are pretty bland, mindless, pablum. And that's the way I like it. I don't want to have to think that any of this really counts. Even the network news seems unreal and unrelated to my life - and that is definitely how I want my news these days. Bush and Cheney are cartoon characters - and Condi Rice is a porn star in my fevered brain. But to say I watch a bunch of TV shows is not to say that I approve of what's going on inside that magic box. Not all of it is benign. Last night I watched another of those "reality" shows. This one is called "Wife Swap." The basic concept is that two families exchange mothers for a period of two weeks. The stated premise is that both families will benefit from the exchange and learn something about how other people live. The not so hidden premise, though, is that the two families will quickly learn to despise the intruding women and the wives will likely have major emotional crises. What fun. In last night's intellectual love fest the swapees were: an uptight, bible thumping, African-American woman married to a rich, white Republican and the gentler half of a lesbian couple with one child. Hilarity ensued. Neither woman was particularly charming, although the republican woman kept claiming how excellent she was and, of course, the lesbian woman had to take her new husband to a gay bar where we could see just how uptight he was. (He actually didn't seem to be all that uncomfortable. Probably to the vast disappointment of the director.) In the end, nothing much is learned. The rich, African-American woman, who viciously castigates the lesbians for their "sinful" lifestyle, fails to ever see even a hint of her own hypocrisy. It wouldn't have been too many generations ago that she would have found herself abused and harassed for being in an unconventional relationship. The lesbian couple were more sympathetic, but also had their issues (as all couples do). But what I kept wondering as I watched was, What the hell is the point of all this? I should know better than to ask that of any program on commercial television. But there has to be some guiding thought behind such a show, something more than that people will watch it. Maybe it is simply the curiosity we have about other people's lives. Or our need to be titillated, to observe people more screwed up than we are. But these shows deal in such broad stereotypes that even that distasteful pleasure is unreal. I could find out more about people's real lives by going out for a ten minute walk around my neighborhood than I could in a hundred hours of watching Wife Swap. But maybe that is the point. It's where I came in . Like the rest of the world, I'm sick of real life. I want to be entertained. I don't want to have to angst about the state of the real world. So, "Survivor," yes. "The Amazing Race," a big thumbs up. Even "The Apprentice" I can get over my disgust. But this show, this "Wife Swap," this amoral, valueless, American drivel is more than even I can take.

Improving Treatment?

2005-02-08T10:08:00.000-08:00

Why is the treatment for Hepatitis C so difficult? Sometimes it feels like extended punishment. I've talked to a couple cancer survivors who went through three or four months of chemo. They both expressed surprise and disbelief that anyone could deal with chemotherapy for 11 months. But that's the sentence for Hep C and researchers have yet to come up with anything better or gentler. The basic theory seems to be that you hit the virus with massive doses of chemicals (it's extremely difficult to completely eliminate a virus), but in the process you also inadvertently bomb away at all the other systems in the body. I haven't felt well, or even close, for one day since I chose to do this. That's not whining, it's simply a fact. At times I imagine some great conspiracy to punish Hep C patients. After all, like AIDS patients, they are getting what they deserve. It should be painful and we should have known we would eventually be punished by God when we were off debauching with tainted needles. But I don't truly believe that attitude, though it definitely exists, is what runs the treatment machine. Hopefully, the moral majority is not deciding policy for the medical establishment. And there are people doing research on new and better cures. But it's much slower than cancer research, for example. And that might have something to do with the client base and the amount of sympathy certain diseases generate in the public eye. I've yet to see a wristband for Hepatitis C - or a charity event of any sort (though the treatment is tremendously expensive and essentially unavailable to anyone without healthcare coverage). Hep C treatment is still very much under the radar of public perception. And many of the drugs that are used have been adapted from cancer treatments. The Procrit I now use is specifically advertised as a therapy for cancer patients with chemo induced anemia. What does that make me - chopped liver? I guess there's no sense complaining - especially if all of this turns out to be an effective cure (which you don't know until 6 months after treatment ends), and the treatment protocol for Hep C virus is definitely more powerful than it was even five years ago (though the side effects of treatment have become harsher). Conspiracy theories aside, I have to believe that there is more that could be done if the facts about this disease were more available to the public.

Super Duds

2005-02-07T09:29:00.000-08:00

Philadelphia lost - again. I had a sinking feeling by the beginning of the second half, as Tom Brady got into gear, that disappointment was right around the corner. I wasn't surprised at all when Donovan McNabb and the rest of the Eagles choked in the final couple minutes when we still had a chance to win. It's what you expect when you've rooted for Philly teams all your life. I'd hate to be in The City of Brotherly Love today. Gloom and doom everywhere (which is the way it usually is in Philly anyway.) Oh well, there's always next year.
That's what I've been telling myself for the last four and a half months - and I ain't still talking football. Of course, I need to make a few changes to my current team in this off-season. Primarily we need to get healthy, though it will be a while before we can get back into the gym. But I can take inspiration here from my boy, T.O.( wide receiver for the Eagles), who proved all the nay-sayers and jerks wrong. T.O. played his heart out, caught just about everything thrown to him and all on a leg held together with screws. I'm planning to put myself back together also. I think we need some new draft choices, though. I'm planning to bring in guys with enthusiasm and level headedness. Guys who are willing to work, do those wind sprints, pack away some food, bulk up, you know. Sure, things aren't looking good right now for the home team. We're disappointed, sick, and spending the day licking our wounds. But give it a few more months (well, a bunch of them) and it'll be time to start working out for the new season: lots of road trips, wind sprints, and good food. Maybe being a Philly guy has at least made me resilient. I ain't happy, but I ain't going away either. There's always the 76ers.

At The Movies

2005-02-04T09:50:00.000-08:00

I love going to the movies. Watching them at home doesn't have the same charge for me - too pedestrian, less engaging. I want the whole experience, the big screen, the popcorn, finding your favorite seat, even the previews are a kick when they don't overdose you with them. Bev and I would go weekly (at least) before chemo. Now, it's not so frequent and I've become wary of making the effort for a film that's either going to be disturbing or boring. I don't have enough reserves of energy to waste two and a half hours on a dull flick. And since my attention span is more limited these days, I often find myself sitting in the theater spacing out and going back inside my own world, which isn't exactly an amusement park. Even some films that have great reviews and are nominated for Oscars have left me cold. After an hour of "The Aviator" I was completely gone. Who gives a shit about Howard Hughes, anyway, and, even if I did, Leonardo DiCaprio still looks like he's a Bar Mitzvah boy. And don't even get me started about "Sideways." I was really hyped for that one and then all it turned out to be was a pean to middle class angst and drunkenness. Wine is not life. Sorry.
But amongst all the disappointing films, there are some that still totally do it for me, remove me thoroughly and deeply from my own troubles. Isn't that really why we go? Last night, Bev and I saw one such transcendent movie: "Million Dollar Baby" directed by Clint Eastwood. The acting was so good that you didn't know they were acting and, for my money, Clint is the best there is. I am in awe. Not only is the dude 74 years old and still producing great films, but he also wrote the score for this one. Was it disturbing? Did I become emotionally engaged? You bet. And I loved and was enlightened by every moment of it. Great art does that. I could barely talk by the time we left the Lloyd Center Theater. Bev asked me what I thought and the best I could come up with was, "That was very powerful." She looked at me weirdly. I guess, what I really meant was that I felt changed somehow. I no longer had to hold on to the idea that I needed to avoid films (and books) that might be upsetting. It's not the content of a film that is disturbing, it's the lack of same. My depleted brain and body wants to be filled up. "Million Dollar Baby" did just that.

My Dark Secret

2005-02-03T09:34:00.000-08:00

Bush gave his state of the union address last night. We didn't watch, couldn't bear to. Whatever he said was totally predictable and thoroughly untrustworthy. Anyway, I can't stand to even look at the man, let alone listen to him simper. It's as if the guy you hated the most in college - the dumb, rich, drunken, popular jock sniffer has become the moral leader of the world. It has to be a nightmare, doesn't it? We're all going to wake up soon and take a deep breath, right? Right???
But why do I continue to obsess about this? Maybe I have too much time on my hands - and obsession seems to fill the spaces like nothing else can. In fact, obsession seems ideally suited to chemo mentality. Each day you have to face a basically unpleasant reality, with no imminent signs of relief. I do my best to fill up those spaces and to stay positive. I know that's more important now than ever. I mean, why be irritable and cranky. There's no pay off there. Unfortunately, moods are rarely rational and it is hard to control the little voices calling out in my brain pan. Too much staring out the window, and the next thing I know I'm all nervous and angry, thinking about someone who has ignored me, done me wrong, not called when they said they would. Someone doesn't care about ME, dammit, precious, wonderful ME, ME, ME. Usually I catch myself at this point, but sometimes I go even further and send a nasty, insinuating e-mail. That always goes over well. Even your best friends won't give a shit about your weasly self-indulgence then. That's me at my worst. But, I work pretty hard to recognize when my emotions are getting the best of me, when I begin to descend into self-pity and obsession. I'm getting good at catching on to myself. Getting therapy regularly doesn't hurt at all either. I mean, you've gotta at least know when you're screwing up. You can't fix it unless you admit that there's a problem. Maybe this is why I hate Bush so much. In that dark place where there is no self-recognition, he reminds me of my worst self.

Down The Road

2005-02-01T09:17:00.000-08:00

I'm on my own this week. Bev is in Las Vegas for business meetings. I wish I had been able to go with her - even though I'm not a big fan of the Vegas scene. Choosing not to be a gambler, there's not that hot attraction for me that I have observed in others. Still, if I could go, I would. I'd go anywhere, even Texas, just to get away from what has become the routine of my life - the routine of chemotherapy treatment. It doesn't allow for being too far away from the hospital and my weekly blood tests or for being at a distance if emergencies come up. In fact, I had to sign a contract at the beginning of treatment that I would not stray too far (I think their wording was more articulate). We have taken overnight jaunts to the coast, and will again, but even on these short trips I find that it's not so much travel as supplemental treatment. I still bring my sick self along for the ride. He just doesn't seem at all willing to leave my side. Damn needy little disease. But the short trips got me fantasizing about all the big trips that Bev and I want to take when this ordeal is over. Alaska, where my older daughter lives, is right up there. I can't believe I've never been. And someplace warm and tropical with amazing beaches and great food and fragrances is high on the list. Before I knew I would have to embark on treatment, we had made plans to go to Israel. Of course, we had to cancel for this year, but that journey still calls out to us. And there are many more destinations we hope to see. All of which reminds me once again, how damn important health is. If I had known that years ago, I might not be in the situation I am now. Youth feels invincible. I wish I still did. So what I'm aiming for is to get myself healthy enough to be able to go on some of these travels I can only fantasize about now. Probably we won't head to Vegas, though.

An Unexpected Joy

2005-01-31T09:34:00.000-08:00

I have to admit that watching the Iraqi voters on TV this weekend filled me with an unexpected joy. It worried me at first that I would feel so emotional about this. My reaction up till now on any of the news clips coming out of Baghdad has been one of disgust and fear. But watching the obvious joy and relief on the faces of the Iraqi voters, both the ex-patriots and those still stuck there, I realized I was feeling all choked up because that is how they felt (filled with an almost unexplainable emotion) - the men dancing, the women ululating, the old people voting for the first time in their lives where there was more than one candidate to choose from. I've never been in a completely similar position. I've always had the right to vote, though often didn't have any option that represented my position. Maybe if John Kerry had won, I would have experienced some of the same joy these Iraqis did. But we're not talking about outcomes here, only participation, having a right, being seen as valid. It meant that in some small (or large) way these people had overcome the terrible oppression and barriers in their lives - at least for now. And a lot of us can relate to that - struggling along and waiting for a day when there is finally some hope, some relief. A day when you think that there may truly be a future.
Who knows what kind of weird shit will happen next. And, believe me, I don't give one ounce of credit for any of this to Bush, Rumsfeld, and their Fascist/Industrialist backers. Sometimes good things happen despite the self interest of others. But despite all the terrible waste that we (the U.S. government) has created in this strange and distant country, despite the inexcusable loss of lives, despite the crazy assed Muslim terrorists; I am uplifted by the courage of those people who went bravely to their polling places and claimed their own identity.

Support

2005-01-28T10:11:00.000-08:00

I've said it before ( I can't say it often enough), you need good support to get through this. I've got the most supportive, most selfless person I've ever known in my wife, Beverly. She has been unfailingly there for me, even when I've been a royal pain in the rear end. It often feels like she cares more about my well being than I do. She provides me healthy food when I no longer have any interest in feeding myself. Not to be too Oedipal here, (I hope), but it's not unlike staying home from school with the flu and having your mother make you chicken soup and tuck you in for naps. I don't know, though, how my mother would have done if I had the flu every day for 11 months. That's what Bev and I are facing. Four down, seven to go. It still feels like trying to walk across the continent in bare feet carrying three overstuffed bags of bricks. Sure we get on each other's nerves on occasion. It's hard not to in the best of circumstances when you're occupying the same small space, but these are not the best. I don't get out much anymore because of the anemia, so we can end up some nights feeling a bit suffocated.
Now Bev's work is going to be taking her out of town for weeks at a time - we haven't had to deal with that too often up till now. And, of course, she's worried about how I'll manage on my own. I'm worried myself, but act like I'm not. I've still got that male fifties thing going on about being strong and self-sufficient and even being embarrassed by accepting help. I never realized I had so many hang-ups until I started chemo. Well, I knew I had a bunch, I just wasn't clear about what they were. In some dark place, I still believe that all of this is my fault. But Bev is helping me get past all that - at least for the now, when such behaviors are just down right silly and counter productive. I was resisting Bev's organizing some of our friends to stop by when she is gone and to check in on me and bring me dinner. I did everything short of stamping my foot to stop her. But eventually she convinced me to see the situation as it really is. Our friends really want to be of help and I, at this point in my life, really need their help. Yes, I admit it. And, most of all, Bev will feel better knowing that I have loving support in her absence. I am one very damn fortunate guy.

Getting On

2005-01-27T09:52:00.000-08:00

I'm slogging through the mud this week. I'm tired all the time, even more so than I have been, and I'm worried that I've gotten into a funk I can't get out of. I don't mean to be a drama queen here, but there is lots of research that shows similar depressed feelings in a majority of interferon/ribivirin patients. One article I read last night on the net (I should probably stay away from these sites) also indicated that depressed patients (us funky folk) tend to have poorer overall results from the treatment as compared to those who manage to stay upbeat. My question now, is how the hell to stay positive and cheerful. I missed that class even before I was sick. Perky is not my thing, nor is letting a smile be my umbrella - that just gets you wet. I was doing fine for a while, but this damn thing is so relentless. There's never a good day, never a break in the action. Sometimes I just want to get in bed and quit. But, I ain't about to do that. I've invested too much already to give up now. At least I need to continue to put up the good fight. I've got some interesting books waiting for me at the library. And earlier this week when I was feeling at my lowest, Bev talked me into an excursion to a wildlife refuge where we drove around and marveled at cranes, and Trumpeter Swans and even a massive eagle sitting grandly in a tree. I wanted to be that eagle.
Some friends call regularly and some even come by. That helps a lot. To not feel so stuck, so isolated. And there are some people who just seem to have disappeared. I guess I'll see them again when I'm better. So that's the update, I'm feeling weak, mentally and physically and I don't care who knows it. Maybe the Procrit will help. You need heavy chemicals to battle other heavy chemicals. But as for my state of mind, absent of the drugs, that's my own responsibility. It's time to keep digging deep, find my resources, keep hanging in. Believe me, I'm trying.

Feeding the Dragon

2005-01-25T09:45:00.000-08:00

I used to love to eat - and to cook. Which would occasionally necessitate a diet, where I would have to carefully watch what I ate and measure calories, give up sweets, stop eating carbohydrates or proteins or wheat or whatever the helll it was. Now I find myself in the opposite position. I'm losing weight every day and not because that is my intention. I want to eat, I'd love to be able to cook up a big steak and a baked potato with sour cream, but frankly the thought of that now makes me sick in my gut. I've lost almost thirty pounds since I started in on chemo, and like a lot of the fall out from these drugs, the conditions seem to get worse as time goes by. I guess that's not surprising, as the chemicals continue to accumulate. The weird thing is that I can't even take any particular pleasure in finally having a completely skinny body. Who cares. I'd give anything to have some good old fat and muscle surrounding my bones. When this ordeal is over, here's one boy who is not about to skimp on the calories. Like a lot of experiences, you don't realize how much you're going to miss something (or someone) until it's gone. Of course, everybody tells me, to just go ahead and eat, force myself. Try eating six or seven little meals a day, they say. Eat a big bowl of ice cream every day, the say. As if they think I'm holding out on them. Hell, I can't eat two little meals a day, how am I supposed to do six? Or cover it with chocolate syrup? Bottom line, I've got no appetite and no interest in food. And now I'm cold all the time, partially because I have no body fat to keep me warm. I'm sure if the geniuses at the drug companies could figure out a way to isolate the ingredient in these chemicals that causes weight loss and lack of appetite, they'd market it as the next miracle cure for obesity. Probably, though, they wouldn't remind folks about how much fun it really is to eat. I think I remember that. And going out to dinner at a nice restaurant. And having a gooey chocolate dessert. Snacking. Candy at the movies. Mexican food. These are good things. Truly good things, the staff of life. Sure, sure, moderation is good too. I should probably make that disclaimer. To tell you the truth, I can't really remember anything about eating.

Four Months and Counting

2005-01-24T09:37:00.000-08:00

The Eagles won! We're going to the Super Bowl. Amazing! There is a balm in Gilead - or at least in Philadelphia. It surprises me how into all this football fever I've become. After all, I haven't lived in Philly for almost forty years. But I guess, your hometown always stays your hometown and the team you root for is the one you grew up with. Now if the Phillies could just get it together.
I started a new drug this weekend - as if I didn't have enough chemicals in my system already. But this one is supposed to help with the wreckage that the other poisons have created. The drug is Procrit and has to be injected once a week (more fear and loathing.) The idea is that it will battle the anemia that Interferon and Ribivirin have caused. Procrit is meant to produce more red blood cells, something I am noticeably lacking in these days. I look like Casper the Unfriendly Ghost. So maybe it will work. It would be a relief if I could feel less weak and unstable, but at this point I'm super wary of all drugs. It's not so much about their intended effects. All of these rotten chemicals, I sort of understand, are meant to help and cure me; but they seem to have such a scattershot impact that they destroy not only the disease, but everything else in their path. My hands were shaking so badly as I loaded up the syringe again last night that I was afraid I'd drop the whole thing - and you don't want to do that with a drug that costs ( I swear this is a true) over $500 a dose. It's insane. I don't pay that since I have prescription drug coverage, but for anyone else who finds themselves in need of these chemicals and doesn't have full coverage, they better either be quite well to do or not care about getting better. Bottom line, baby, in this country health insurance and prescription drugs are only available to the few.
Anyway, it's Monday and I made it through another week (week 16) and the Eagles (as I've pointed out quite clearly) are GOING TO THE DAMN SUPER-DUPER BOWL. Life goes on.

The New Boobs

2005-01-21T10:12:00.000-08:00

I'm looking forward to watching the N.F.L. playoffs this weekend. I'm rooting for the Philadelphia Eagles, since Philly is my hometown and it's been many frustrating years since a major Philadelphia sports team has won any championship. Hey, if the Red Sox can do it, so can we. I feel like I'm watching too much television these days, but I also don't particularly care. Life is not normal of late and I indulge my weaknesses - at least some of them. When we decided to go ahead with this treatment, one of our ways to prepare and to ease the sting, was to go out and purchase a state of the art, LCD, HDTV. We spent a lot more money on it, than either of us would have been willing to do normally, but it's been sort of worth it. Even Bev has become a bit of a TV addict, where before she wouldn't have been able to tell you who Jerry Seinfeld is or when to watch NYPD Blue. But I've managed to pretty thoroughly ruin her cultural innocence. Not only do we regularly watch "The West Wing" and "Desperate Housewives," but also Donald Trump's "The Apprentice" (talk about a guilty pleasure). Then there's HBO and On Demand movies. I can watch almost anything in high definition - it's better than real life, reality lit perfectly. And don't forget "The Daily Show." I end my day with the fake news. It's much more real than the network news and I always get at least one good laugh out of it. So, hooray for the boob tube - at least when you're feeling disabled or discontent. It's our 21st century soma, something to get us through the dark days, ease the pain, loosen the tightness, or just bore us so badly we're ready to gratefully go to sleep. So on Sunday you know where I'll be. Sitting in front of my high powered boob tube, rooting for my home team and waiting for the time to pass.
Go Eagles

Control?

2005-01-20T10:06:00.000-08:00

I've been trying hard to feel that I'm still in control of my life. I know it's a bit of a delusion. No one is ever truly in control, though we like to think we are. But especially now, four months into this awful treatment, I find myself on some kind of edge. I could easily give in completely to the poisons swarming through my system and take to the bed. I know that's how some people get through it. Or I can continue to do what I've been trying to do this far - to take whatever actions I can to feel like I can have some effect on the course of the treatment. Probably either approach works equally well or not at all. But I still choose to put up a struggle - most days. On some days there's little I can do except give in to the poisons and roll around in bed moaning or staring off into space. Fortunately, on the majority of days, I get up out of bed at a reasonable hour - even though I have no particular reason to be up - I take my first set of pills - vitamins and supplements. I read the paper, then have as much breakfast as I can manage and take the first dose of Ribavirin, three innocent looking white capsules that are actually wildly powerful. Then I sit down where I am now and work on this blog. I make it feel like a job. The work has to get done, you know. Later, I'll have medical appointments to keep, more drugs to take, and hopefully will have some social meeting planned. Today, Rabbi Joey is coming to visit and I have plans to meet my daughter, Gabrielle, for dinner. Seems like a pretty full day - and I may very well find myself exhausted at times. It takes all the energy I can muster to climb a flight of stairs. But I continue to believe that these efforts on my part and on the part of my family and friends are what is going to get me through this ordeal. I can't give up and sink into despair and anger. Which is not to say that I don't have days where anger seems like the only logical response and days where I can barely rouse enough energy to feel sorry for myself. I accept those days too. I'm not silly enough to believe I truly am in complete control. Hepatitis C took care of that.

On My Political Despair

2005-01-18T09:42:00.000-08:00

So Bush is being inaugurated - again - and the headline in today's Oregonian proclaims that 1 in 6 residents of the state has no health insurance. (If you look at effective medical coverage, the numbers are much higher.) Never have I felt more despair about who is running this country and what we have become. Not even during Vietnam or during the Nixon regime did I feel as powerless and as stunned as I do now. At least back in the 60's and 70's protest seemed viable. Despite all the blockheads, we still believed in the possibility of change. I thought that when we reached the 21st century, people would have come to their senses, that we would acknowledge as a society that we had to do the things that were necessary in order to survive on this planet. I remember going to Earth Day celebrations back in the late sixties. The celebrations have continued year after year, but George and Dicky just smirk as they sell off the wilderness to corporate interests. It's hard not to feel pessimistic - if you can manage to feel anything at all. Shit, where is this all headed? Are corporate thieves, fundamentalist religious crackpots, and weirdly patriotic dumbasses truly now in charge of what it means to be an American? One insane idea after another becomes reality as good people sit idly by and shake our heads. No matter how many lies they are caught telling, this administration never deigns to make explanations. Why should they? Mistakes are for losers and debate is the province of ineffectual academics and intellectuals. Do you imagine for a second that little Georgie has even the tiniest bit of curiosity or introspectiveness? Do you imagine that he's ever read a book more challenging than a Tom Clancy novel - if that, and, come to think of it, with apologies to Clancy. Does anyone imagine there will be a positive change in the next four years? Will we still be in Iraq? Come on. Will our young men and women be sent into yet other distant countries to intervene in and bludgeon their social order? Will every court be packed with flag waving, gun toting, right wing cronies? Will health insurance and a secure lifestyle become the right of only the white and wealthy? When will we be able to take a deep breath again? What ever happened to the dream of a fair and just world?

Stumbling Out the Door.

2005-01-17T09:18:00.000-08:00

I'm looking forward to getting out of the house today. The big ice storm of the weekend kept us mostly stuck inside the whole time. Not that I was about to go anywhere anyway (weekends I'm knocked flat), but it's nice to think you can. Actually, on Sunday we finally bundled up and ventured out for a short walk, Bev leading the way. I had to take tiny, careful steps down our icy front steps. I felt like an old man, like an invalid. Think about that word. Once we got going though, I felt a ton better. Hard as it is sometimes to move, to get out, it's the best thing for me. Doesn't matter if I go slow, doesn't even matter if I stumble and feel dizzy, the point is the moving. It's too easy to get stuck in one place and just settle in for the duration. And I'm not here making reference only to dealing with illness. I had the same struggles before I started chemo. Granted there wasn't quite so much to overcome, but I still would often find myself stuck, without the energy or inclination to get up off my ass and go out in the world. The television was too seductive (still is) and why not take a nap while you can. After all, life is generally disappointing, isn't it? But eventually, then as now, I would drag my sorry rear end up off the couch and get moving. And, when I did, I would inevitably feel a whole lot better and more inclined to believe there was, indeed, something worth living for. Though my options now are greatly diminished, the same principle holds true. You gotta do the best you can with what you got. Is the glass half full or half empty? Neither. It's a half a glass of water. Have a drink, boy-o.

Waiting

2005-01-14T10:23:00.000-08:00

Here we go, heading in to another weekend. I used to look forward to those lovely two days of relaxation and hope to again, but for now the weekend means chills, fevers, headaches, curling up in a little ball and hiding out from the storm. I'd like to say it's gotten better after almost four months of this torture, but it hasn't and it won't and so maybe I should just shut up and take my medicine like a good boy. Maybe. But what the hell, I feel like I deserve to whine and moan once in a while. I try, probably harder than I should, to keep the howling contained, but if I do it here, who cares. A friend told me that at this point I'm not an accurate judge anyway, of what constitutes whining. Why am I even so hung up on this topic? It's like I'm trying to convince myself that I have a right to feel this shitty? Maybe it's the act of trying to translate those feelings into text. I imagine that some readers will see all this as self serving - and, even worse, boring. I think there is a tendency in our society to try to ignore illness. It's unpleasant and difficult and, what the hell, people get better or else they don't, right? What's the use of belaboring the point or coming to visit when it's only going to make us feel uncomfortable? My experience so far has been that there are people who continue to come around and call and there are those who seem to have disappeared. They send an e-mail or call once in a great while, but it becomes evident that they are uncomfortable with my new situation. It's almost like I've morphed into a different (and for some reason threatening) person. It reminds me of when I was a kid and my family would go visit my grandmother, who was then senile and in a nursing home. I found the whole adventure terrifying and often refused to go in with the rest of the family. I didn't want to see my Grandmom looking and acting like she did now. I don't know, I can't make up reasons for what other people do. Everyone has complicated lives and lots of responsibilities. And I know that relationships work from both sides. Maybe I need to reach out more myself to those people who I would like to see and still have in my life. It doesn't seem to work well ever to sit about waiting for life to come knocking at my door.

Mr. Nasty

2005-01-13T11:33:00.000-08:00

I find myself getting unreasonably angry somedays. I'm not sure why exactly. Some of this anger seems completely out of proportion. A barking dog can deliver me directly to thoughts of canine homicide; a driver who makes the wrong decision while I'm in a nearby car is asking for trouble. Sure, a good piece of it has to be attributed to the drugs I'm taking daily. I wasn't this emotionally unstable before I started. Well, at least not in terms of road rage and murder. I think it must be some sort of transference; my attempt to make a protest against what I am essentially powerless to control: namely, my own disabled existence. A friend of mine recently accused me of sounding bitter in these postings. Maybe so. I'd never thought of it that way - and still don't. Bitter implies that I think there is something unfair here, that the world and its inhabitants have done me wrong. I don't think that for a second. Things happen; you deal with them as best you can. I hate what I'm going through and I hate how hard it is on my wife; but we're both bearing up and, I believe, even finding previously unknown sources of strength. For me, I'm discovering how much I can endure. And it's a lot more than I ever thought I could. I don't pretend to be a tough guy. I'm not going to grit my teeth and bear any injury stoically. I'm going to shout and cry, but I think I am going to get through this. I also understand that a lot of it is not in my control and I'll have to deal with new issues as they come along. So, yeah I get angry - and sometimes I transfer it to objects and people who don't deserve it, but that's the way it goes. I've got a lot of time on my hands; sometimes I have to make things up just to feel like I have a little control. You wanta fight about it?

Don't Complain

2005-01-11T09:53:00.000-08:00

When I was a kid and would get sick or injure myself, I remember feeling like someone or something had singled me out for punishment. I guess I couldn't, at that age, make sense of illness. I needed someone to let me know that being unwell was as natural a part of life as being well. I still have trouble with this concept. Somewhere I feel guilty for being sick, sometimes even ashamed. It's that same feeling from childhood that makes me alternately want to hide my illness (as if I'd done something bad) and then receive comfort. I still find it necessary, in my own head, to keep convincing myself and others that I am truly sick and that the symptoms I'm dealing with are authentic; that I'm not faking it. No big surprise where this last one comes from. My father, a general practitioner, had no time or sympathy for the illnesses of his children. It was as if, since we were children of a doctor, we were expected to always remain healthy - and when we inevitably didn't, it felt as if we were somehow at fault, had done something wrong and bad and shameful. "There's nothing wrong with you," he'd tell me after a cursory look inside my mouth. "Don't waste my time." It seemed to be his philosophy that almost all illnesses and complaints were psychosomatic at best, pathetic requests for attention at worst. And it wasn't only family. My father's office occupied the first floor of our house. When he had office hours, we all had to creep about silently upstairs for fear of disturbing the patients. It wasn't unusual for us to hear my father telling a patient downstairs, the same things he told us. "There's nothing wrong with you. Go back to work and stop faking it. Now get out of here." Obviously, medical practice was different back in those days. My father was the only game in town in our city neighborhood and all his patients seemed to love and respect him, despite his lack of sympathy and, I assume, treatment. No need to tell you what he must have thought of psychotherapy. But it's hard to let go of these childhood impressions; they are burned so deeply on my psyche. It was such a relief to me when I recently met with my doctor and told him all about my symptoms and had him affirm that they were all real and that he understood what a difficult time I was going through. Even with all this daily suffering, I sometimes don't feel like I have any right to my pain and sickness. That other voice keeps telling me, "Oh, get over it. Real men don't complain."

Progress???

2005-01-10T09:59:00.000-08:00

As always, I am glad that the weekend is over. I hate being so incapacitated. I guess the upside is that being flat on your back, makes the rest of the week look good by comparison. My other big excitement this morning is using my new computer. I finally broke down and moved (hopefully) into a newer world of high speed hoo hah. I'm still struggling with the learning curve. I bought my "old" computer in 1997, but it seems everything has changed since then. I sometimes yearn for the straightforward simplicity of a typewriter. And what the hell was wrong with sending real letters instead of electronic ones. I know, the world moves on; this is progress. But I can still resent it - and even get anxious about it all. I've been spending more time figuring out how to set up the damn programs on this computer than actually using them. I think I am, at this point in my life, formally entered onto the road of becoming a curmudgeon. Don't even get me started on cell phones. Though, again, I do have one and do use it. Am I a hypocrite or am I just not yet willing to retreat and say, screw it all, and spend the rest of my life in a van down by the river. It looks, for the moment, like the latter will hold sway. Even as I continue to type away here, I am feeling more comfortable with my new I-Mac; and it is a sweet looking machine, flat paneled and sexy in some weird way. (Gad, even my aesthetics are changing.) And when I push one button on the damn cell phone and get connected up with my daughter in Alaska, I have to admit that is pretty cool too. It also makes me angry, though, when I see almost every other driver on the road with those damn things pressed to their ears and not paying a lick of attention to their driving. I don't know how any of us survive on the highways anymore. So you see, I can go back and forth on this forever. But in the end, what I decide really doesn't matter much. Progress, such as it is, is progress. "Changing tides wait for no man." I'm on the bus, taking advantage of the technology I have available to me, even if I end up sometimes feeling humiliated in the process. It's not unlike my treatment: sometimes you just have to get through the uncomfortable part in order to move on with your life.

How Difficult is Difficult?

2005-01-06T11:03:00.000-08:00

Don't know where to start today. I've run out of insights - personal and otherwise. All I want is to get through the day relatively unscathed. In my case, on a weekday, that means that I avoid any major physical breakdowns - no crippling headaches or total loss of energy or that the rest of my hair doesn't fall out (not that that would be such a big deal). I don't have any expectations any longer of actually feeling good. That state of being is not available to me as long as I'm taking my medications. There are side effects (lots of them) and they don't go away. I recently at long last had a face to face with my physician. First off, I handed him a long list of all the physical effects I'm experiencing every day from chemo. "Is this normal?" I wanted to know. He glanced at my carefully constructed list of fourteen separate effects and tossed it aside. "This is just what I would expect," he answered. "If you weren't experiencing all or most of this, I'd be more concerned. What all this tells me is that you're doing what you're supposed to be doing - you're taking all your medication and having a "normal" response." He continued on, "You know we tell people when they begin this treatment that it's going to be difficult, but most don't really believe it or don't understand what difficult means in terms of chemotherapy. But you have to be tough and determined to get through this." "Will it get any easier in the next eight months?" I asked.
He just shook his head. "No. As long as the medication is doing what it's supposed to and you continue to take the prescribed doses, the effects you're feeling will continue." Maybe I should have been depressed by this news, but instead I felt better. I knew what I was facing and would have to continue to face. I'd much rather deal with reality than be disappointed by self-induced fantasies. And I felt even better having had a chance after more than three months to actually have a personal meeting with this busy man, who for all his business, unhurriedly answered all our questions and gave completely of his time. More than anything, it seems to me that real human contact and personally delivered information is one of the keys to getting through all this in one piece. And I learned (once again) that in this, as in most of life, you have to ask for what you need. Like Mick said, "You can't always get what you want, but you get what you need." As long as you ask for it, that is.

Caretaking

2005-01-05T10:31:00.000-08:00

I probably shouldn't write about this subject. I don't have much knowledge of what it actually takes to be a caretaker. I've never had to do it. Sure, I raised two children, but that's a different sort of responsibility. Most parents, including me, find parenting a blessing and a joy. The kind of caretaking I want to talk about is often anything but enjoyable. It's almost always difficult and challenging and the rewards can be minimal, even the gratitude is often absent (maybe it is a little like raising kids). It's a damn hard job and takes a certain kind of person to be able to take it on and do the caretaking without losing their humor and patience.
I know something about these things because I am in the position of needing a caretaker. I guess that makes me a caretakee or a caretook, or something. And this is a difficult position also. There's often a thin line between extreme gratitude and resentment that the one being tended to feels. "I am so deeply pleased that you are willing to do this for me and at the same time I wish more than anything that I wasn't in this damn vulnerable position and could take care of myself." And sometimes I feel like I need to scream and run away. Though I'm not able to run any longer, so there you are. Although I know that Bev, my primary and only caretaker, is absolutely willing, does it out of pure love, and is eager to shepherd me safely through this awful, sometimes disastrous, year; there are still times when we both struggle mightily with our enforced roles. Right from the start we knew we were headed into tricky areas and decided before my treatment even begun that it would be smart to start seeing a couple's counselor. It has turned out to be a brilliant move. It gives us a time and a place to air out what is going on and to say the things that are sometimes hard to say on your own. It also helps immeasurably to have an outside observer continue to remind us that these are not normal circumstances, and part of dealing with the caretaker/caretook equation is to step back and give ourselves a break. An issue that might be worth working on in healthier times, may be irrelevant when all the complications of illness and chemical poisons are factored in. Knowing this, unfortunately, doesn't mean that there aren't times when both parties get irritated or angry with the other. Sometimes life seems extraordinarily difficult. And it is. Cliche though it may be, life becomes a one day at a time proposition. You put one foot in front of the other and try hard to remember to be kind.

It's So Cold

2005-01-03T09:55:00.000-08:00

I hope it snows today or sometime soon. It would be a relief of sorts, something interesting and new to look at. I realize this is a selfish wish, as I can (must) stay inside and watch from my window, while the working world must continue to struggle on, putting on chains and sloshing through. Well, what the hell, I'm willing to claim any advantage at this point. It is a pretty nice day today here in Portland. The sun is shining, but it still looks cold. I'll go out for a short walk later on. It's the only exercise I get now. Thank God I can still do that. The deal is that I walk so slowly that I don't warm up, so I really have to bundle up - scarves and gloves, hats and lots of layers of shirts. This feeling of being chilled to the bone is not restricted to being outdoors. I don't know which drug is responsible, but I'm almost always cold to my core, even when I'm being feverish. The chills could also have to do with the fact that I've lost so much weight that I don't have any insulation anymore. Who'd have thought I'd miss my fat? Anyway, you can probably ascertain by now that I don't have a great deal to say today. I'm staring out the windows; hoping for a change, and knowing that it's not that time yet.

Moving On

2004-12-31T10:58:00.000-08:00

Well, 2004 was an interesting year. And that's about the best I can say for it. Personally, politically, and worldwide it was a disaster. And, unfortunately, all the disasters are still raging on. It's goddamn difficult to find the light and the joy in the midst of all this. Tell me, what's the upside of Iraq or George (Gidget) Bush, or the Tsunami, or Hepatitis C? Don't bother to answer. All I know is that we still have to press on, no matter how difficult, absurd, or painful things are. Why? Because that's what we have to work with. Maybe things will turn around, maybe we'll all wake up from these bad dreams and start treating each other with kindness and love. But probably not. I think endurance is the key. I've been learning that waiting has its own rewards. Maybe it's just another way of learning the value of patience. I've never been good at delayed gratification, always wanting what I want when I want it - and, of course, rarely getting it. Now that I have no choice but to wait, I'm forced to note all the small, good moments that still make their way through even the worst mess. As sick as I've been, I have never had more moments of gratitude and love than I've had in the past three months.
Now, I ain't gonna start off the year being a pollyanna; this sucks, and if given the option, believe me, I wouldn't be poisoning my body every day with chemicals and George wouldn't be in the White House and the whole world would be peaceful. But, these are not viable options. This is what I've got, this is what we've all got: Struggle, endurance, hope. Happy New Year.

Sleep Deprivation

2004-12-30T11:02:00.000-08:00

Didn't sleep hardly at all last night. And so today am even more shaky than usual. Every day is a new adventure here in chemo world. One of the (many) reasons I didn't sleep was because I was nervous about the results of my last blood tests. I'm still waiting for the phone call that will give me the good/bad news. My nurse manager calls to discuss my situation after each blood draw. She seems quite competent and caring (as much as anyone can be caring on the phone), but I feel like I'm once removed from the real seat of information and authority - my doctor. I haven't seen him since I started treatment 13 weeks ago. Whatever happened to the doctor/patient relationship? I thought modern medicine was moving more in the direction of valuing that personal contact. I just finished rereading Norman Cousin's book, "The Anatomy of an Illness," in which he makes the case that almost nothing in treatment is more valuable than to have the patient feel that they are truly being seen, that they are not just a statistic. I can't say I've had any sense of being seen as a real person in my treatment. Maybe it's part of receiving health care from a large HMO. Sometimes, when I go there, it feels like I'm lining up for medical attention in the old Soviet Union. I want them to look at me, dammit, not my health care number. I'm going to try to be a stronger advocate for myself there. Maybe it's a case of squeaky wheel syndrome. I'm going to ask (demand?) that I have an appointment with my doc, the gastroenterologist in charge. I want some real face time, time to ask questions, to find out if what I'm going through is normal, to maybe get some reassurance that all is going well, or at least as well as can be expected. And I don't want to have that conversation on the phone.
I heard an Iraqi woman speaking on TV yesterday. (Okay, okay, it was on Oprah. I'm desperate here.) She said that a major problem for Iraqi women is addiction to Valium. Apparently, it can be bought very cheaply there and, in a dangerous and often hopeless, world, it provides the only relief they can find. I definitely can relate - though my situation is not so grim. But that impulse to make it all go away - at least for an hour or two - is more than tempting. It wouldn't be hard to go down that old road.

Faking It

2004-12-28T11:49:00.000-08:00

This winter is likely to be a soul cruncher. We've been lucky so far, still seeing the sun on occasion. But for those of us with an inclination toward depression anyway, these months can be a challenge, a challenge not to drop into a deeper, darker hole. Sometimes I think that the only way to get through both the winter and one's life is to fake it. Isn't that the AA line, fake it to make it. Life is just too hard and grim at times, especially when you add in a serious illness. The natural and, I believe, rational response to much of what life throws at you is to be bummed out. Hey, man, who needs this. Let me just lie down and sleep till it's over - whatever it might be. But you can't go there. That's too easy an answer. I don't have any idea why I know this, but I do know that none of us can give up. Sure there are going to be days, even weeks, where the only sane response to an insane world is to climb into a warm bed and pull the covers over your head. But, in the end, there ain't no life there. The question then becomes, how the hell does one stay positive in the face of hard times. This is no idle question for me at this point. I'm struggling every day to not fall in to that hole in the ground, not to give up talking and walking and going to the movies. And, as if you didn't know this, I have absolutely no fucking answers. All I know is that I have to keep looking for them - the answers, the comforts, the reasons to face another hard day, to take another poisonous shot, to get out of bed and go take a shower when I know I'm going to be sick and dizzy by the time I'm done. But at least I'm up, man, and there is big potential in that. Maybe it's a spiritual answer I'm looking for, but that's complicated and long and, probably basically unknowable. But then maybe it's all spiritual. In a way, it has to be. Why else would we all go on taking this pain and suffering? Okay, okay, I'm done. Enough bullshit. I'm up and about. What else can I ask for? Well, let me see . . .

Getting Past My Self

2004-12-27T09:36:00.000-08:00

I keep banging in to myself. No matter how I try to hide or duck. Sooner or later I'm face to face with me. And I sure don't always like what I find. The longer this treatment goes on, the more I feel rubbed raw. Everything is either right on the surface or buried as deeply as I can bury it. Then, since I was raised in a certain way at a certain time, I was taught that people shouldn't complain about their situations, including medical ones. I guess, the thinking goes, that it's a sign of weakness and generally unseemly -especially for a grown man. But it can become a potent combination for rage and terror, when one tries to contain the very thing that is consuming all of their waking hours. If you can't tell the people you love what you are truly feeling, there's a tension that builds, a feeling that nobody understands or cares. And it's true, some people, even good friends and family, don't seem to want to hear what you are going through. It's understandable; many were raised with the same weird values as I was. They are more comfortable hearing that everything is going just fine, now let's make small talk. And you want to go along - you don't want to add to their burden of apprehension, especially family members at a distance. I mean, they're worried and don't know quite what to do or how to help. So, when they call or I see folks out in the world, my response to their "How ya doing?" is vague and basically untrue: "I'm okay, hanging in there, you know how it is." But then I end up feeling isolated, both by friends and family and by my own actions. I'm trying to work on this problem in myself. I need to talk truthfully to the people who I know will listen, and want to. If I have to be a complainer, I'll be a complainer - and those who don't want to hear it, can always hang up the phone or stop reading this blog. With all that I'm burdened with in this part of my life, I just can't keep it all contained - and won't. But first, I have to get past myself.

A Time For a Break.

2004-12-21T10:20:00.000-08:00

We're driving to the coast today to spend three days in Manzanita. It will be the first time Bev and I have gotten away for more than a day since the treatment started. I'm excited, but also a bit wary. I worry that I won't be able to do any of the things we enjoy doing on vacation. I know I won't be able to go for long walks on the beach or drive all the way there by myself or enjoy eating out at funky cafes and top notch restaurants. But what the hell, Mister Negative,
I'll still be able to look at the ocean and read and relax, hang with my honey and maybe even get some emotional relief from the ongoing debilities (yes, the drugs have to go with me.) The ocean has that effect on me. Just the sound is more soothing than anything I could read in philosophy
Anyway, it'll be a kick in the head and when we come back on Friday, we're having dinner with friends on Xmas eve - for Jews and orphans, Bev says. By that time I should be thoroughly, contentedly, exhausted and ready (????) for week twelve injection. This is a big one. It means I've gotten through the first quarter of the 48 weeks, but more importantly, it's when I get tested to see if the viral load is actually going down - the main point of all this torture. I'm barely allowing the thought that it might not be working. I couldn't handle the idea of all this discomfort for nothing. Not to mention that if the chemo ain't doing its thing, I ain't gonna be doing mine for long. But enough of these evil thoughts. It's time to get packed and get drawn, like little wet animals, to the Pacific.

Indulging Myself

2004-12-20T09:51:00.000-08:00

Another difficult weekend. So what's new? You'd think I'd get over it by now, but somehow that's not the way it works. If you've ever suffered a really bad flu - chills, fever, splitting headaches, you know basically what my weekend feels like - just add in a solid handful of dizziness, shortness of breath, and nausea and you've got it. What I'm saying is there ain't no way to get over it - except momentarily. By Sunday night I feel so worn out, that I sometimes wonder how I can manage to go on. That's when I'm really down and feeling sorry for myself. It's a mind game. Yes, the pain is real, but the game is to keep figuring out how to live with it and not give up. Some days I do that better than others. Well, today is Monday, so I'm feeling somewhat better. Okay, okay, I feel considerably better. There, are you happy now? I know sometimes I just want sympathy. An additional side effect of chemo seems to be to turn me back into an eight year old who wants to just stay in bed and have Mommy take care of me. It's okay. I'm allowed to feel that way. I can indulge myself. In a weird way, my understanding of my childhood and my relationship with my parents has also grown. I don't blame them for nearly as much and my memories seem to grow sweeter, more forgiving. I wish they were still around so I could tell them. Tell them I know now how hard they worked to make me feel safe and comfortable and loved. Just like I made that same life long effort with my children. And in neither case did it seem to work. Maybe that's how families have to be - pushing and pulling until it's too late to say the things they really mean. Maybe in some twisted way, my feeling sick all weekend allows me to stay in touch with that little boy who needed his parents more than anything in the world and could never figure out how to tell them. Maybe my being a basket case for 48 weeks will help me to figure out how to tell the people who are still around how much they mean to me.

Cliches

2004-12-17T10:29:00.000-08:00

It's the middle of December and the sun is shining. I may even get out and walk today - for a few blocks anyway. That's my limit before I start wondering whether I'll make it back myself or have to call Bev on the cell phone to come pick me up. But I'll take what I can get, especially before the week-end when I tend not to get out of the house (or sometimes the bed) at all. This treatment can really bring home the meaning of cliches. "Live for the moment." "Take the good with the bad." "Time marches on." So, it's December and soon it will be January, 2005. I don't think I ever imagined living to the year 2005 - certainly not back in the Sixties and Seventies. The idea then was to live hard and leave a handsome corpse. I came close, but I'm glad I survived, as did most (not all) of my friends. And now we're faced with 2005 and George (Dumbass) Bush, is our President. What the hell has happened. I'm still not over the election. I think that was more traumatic and disappointing for me than having to go through 48 weeks of chemotherapy. And I still haven't quite figured out how to deal with either, other than to keep on keeping on and keep my head down, and focus on the sunshine . . . I could go on. Of course, one sometimes grows weary of cliches too. It would be satisfying to be more proactive, to storm the damn gates and take no prisoners. I have no idea what any of that means. It's not the time for revolution. It's the time for patience. That's truly been my steepest mountain to climb during this period (or any time period). To be able to hold the stillness and wait. Another cliche, which I'm not sure is true, but may be. "All good things come to he who waits." Nah, I don't think so. It's best to have a combination of waiting for what you can't have now and working on what you can. My challenge is ongoing - not all that different now than it was before I started treatment. I have to keep finding that place inside myself that allows me to be free - for a day, a minute, a second. Don't get me confused with some mystic or saint (I'm sure there's no chance of that), I'm not talking perfect goodness here - just the very occasional glimpse of a better me. Bring on 2005 and whatever comes after. Which would be 2006, I'm guessing.

Bah Humbug, Boo-Hoo

2004-12-16T10:09:00.000-08:00

I can't say that this is my favorite time of year. So I won't. Fact is, I despise this damn Xmas bullshit - with all due apologies to the few people remaining on the planet who still view December 25th as a religious holiday. It's not even the commercialism of the whole thing that bothers me, though it is somewhat disgusting how people spend money that they don't have on people they don't particularly care about. But what the hell, when the credit card bills start coming in, you probably won't even remember what all that money went for. I'm such a cynic, I know. But maybe that's not such a bad thing. The thing that most gets me about the "holiday" season is the effort at forced jollity. Those words just don't fit together. Because you walk around at work with a ridiculous looking hat on your head and sing carols that are often offensive to your non-Christian colleagues (yes, these people do exist) doesn't mean that there is anything particularly joyous going on. In fact, the whole endeavor smells of desperation. As do the extravagant light shows and keeping up with the neighbors. Would you really want to live on Peacock Lane? What if you were Jewish or Muslim and didn't know what you had gotten yourself into. Us outsiders tend to keep a low profile this time of year - at least as much as possible. Of course that doesn't stop the TV from its endless "jolly" ads, nor does it stop the assumptions of well meaning friends that you might like to receive cards emblazoned with the nativity scene. Hey, from what I can tell, Jesus was a pretty good guy, but stop forcing him on me, will you. Yeah, yeah, happy birthday already. Like anyone even really cares about that.
I think what is really at the heart of my seasonal bitterness are childhood wounds. (Those are at the heart of just about everything short of nuclear war.) As bad as this Xmas business can be, it was much worse in some ways back in the fifties and sixties, when school administrators had not yet been made aware of cultural and religious diversity and it was widely assumed that everyone was indeed a Christian and should participate in all the rituals thereof. Like a lot of Jewish kids of my generation I was coached at home by my parents on how to get through this trial without either giving myself away or crying. When all the kids had to stand up on stage in the auditorium to sing Christmas carols, we were told to go ahead and sing, but to silently mouth any words that made us feel uncomfortable (i.e. Jesus, King of Kings, etc.) It was a real balancing act. And why didn't we have a Christmas tree? All the other kids did. How come I had to go over to my friend Billy's house to throw tinsel? So, you see it all comes down to jealousy. Who gets the most stuff and who gets shut out. The way of the world. I'm ready for New Year. It's a much more egalitarian holiday.

Time Passes - Ready or Not.

2004-12-14T10:59:00.000-08:00

Well, Hannukah's almost over. Tonight's the last night. I keep looking for markers, to feel the time passing. It's a different mind set. In normal times I remember feeling concerned about how fast time seems to slip by. A year passing by was nothing at all, and usually, despite all logic, I wanted that time back. It was always painful to watch my children grow up so fast and then quickly become adults with lives of their own. I know it's a cliche, but it happened in the blink of an eye. Our whole lives are like that. One day you're twenty-one and trying to figure out what to do with your life and the next time you look around you're fifty-five and wondering where it all went. So, this year, I guess I have an opportunity to step outside of time rushing by. This year it's all the opposite. Time has slowed down to a crawl. I mark every day's passing, not with joy, but only with the sense of getting one day more completed of my treatment. If I could snap my fingers and be at the end of the treatment, I'd do it in a heartbeat. I want this year to go quickly; I want to stop struggling with these damn side effects. I want to be able to take long walks again and climb stairs without sucking wind. But, life doesn't work that way. No matter what's going on, you've got to bear up under it. And, I believe - feeling quite pollyannish now - that there is something to treasure in even the most difficult of passages. I can be more specific. Not that this is so insightful, but it's something I've often missed. The harder things get, the sweeter the moments of transcendence are. Unless you're bound and determined to suffer all day, every day (as I have allowed myself to do more than once), there have to be times when the suffering lets up, the sun shines in your front window, a friend calls on the phone, you get to laugh at a good joke or cry at a schmaltzy movie. Being sick does not allow one to give up on being a human being. All the same possibilities are there and time keeps on passing quickly by and it's never coming back again. So sick or healthy, I want to take my days one by one and do what I can, when I can to appreciate the life I've got. Is all of this very contradictory? Of course. What did you expect - easy answers?

Darkness and Light

2004-12-13T11:04:00.000-08:00

I felt like I hit a wall last week. It wasn't the chemicals or the sickness exactly, but my own attitude toward what is happening to me in this passage. Something shifted; I went into the darkness. I wasn't answering phone calls from friends and canceled those meetings I had previously planned. I told people I was feeling too weak to get out and too dizzy to talk, when they volunteered to come by. But that wasn't the case - yes, I was weak and dizzy, but I've been that way for ten weeks now. What I realized I was up against was my own sense of despair, which seemed to have crept up on me and was beating me down into my sedentary, self-pitying darkness. I've somehow realized right from the start of this treatment that the only way I was going to make it through in one piece was to stay positive. And, believe me, I'm not one who has been inclined in that direction in the past. You'd be more likely to categorize me as a pessimist - if anything can go wrong it will. I've tended to cynicism and skepticism. I'm a city boy, always looking over my shoulder. But this 48 week chemo was not about to respect my self centered drama. I knew I was going to have to climb out of that hole and find ways to be engaged and even to be grateful and maybe even occasionally content. I've actually been working on this transformation for some time. Still, if you woke me in the middle of the night, I'd more likely suspect that the end was near rather than that you wanted to climb in with me and cuddle. Anyway, I was back in that dark place last week. Just sick and tired of being sick and tired and not able to see the end of the road. And you know what? In the end, I decided it was okay. That darkness is where I'm going to be part of the time. There's no way around it. I've never before been through anything that demanded quite so much endurance. And I realized (with the help of my shrink. Oh, you better believe I'm seeing my therapist every week) that there are going to be lots of peaks and valleys in this journey. I can be all the way in the soup one week and back up on top the next. It doesn't just happen though. There is definitely a tendency, which I've heard about from other patients and is well documented in the medical literature, for patients undergoing chemotherapy to slip into despair and take to their beds for the remainder. What I have to keep working on is myself, reaching out, accepting help when I need it, trying to stay engaged with life, trying to be as whole as possible in this fragmented, weird time of my life. All I know is that tonight I'm making latkes for our Hanukkah celebration (the celebration of light) and my daughter and her partner are coming early to help cook and to schmooze. What could be better than that??

I Feel Pretty (Not)

2004-12-10T11:36:00.000-08:00

Fridays can be difficult. Well, any day can be difficult, especially when you're scarfing down all these yummy chemicals. Shoot, I forget what it feels like to stand up without getting dizzy or walk up a flight of steps without getting out of breath. I think it felt pretty damn good - I just didn't bother to pay attention to how good. Anyway, no self-pity today. It doesn't serve me well and is probably irritating to others. But back to this Friday thing, this thing I'm already obsessing on, this Friday night shoot 'em up thing, this heart in my mouth, hand shaking, scary, lump in the throat thing. This thing where I load up my syringe with bad ass chemicals and shoot them into my belly. It's almost like the bad old days, except that there's no expectation of joy - or even oblivion. Much the opposite in fact. Once I inject myself on Friday night, all I can do is wait for the inevitable and awful, debilitating side effects to take over. I wait till ten o'clock or so, telling myself that I can just get into bed and fall asleep and thus maybe miss the worst of it. But that hasn't worked yet. Who can fall asleep, thinking about oncoming fevers, chills, and headaches. I know, I know - I said no self-pity. But I'm just telling it like it is. I'm sure there are some brave souls out there, more able to distance themselves from the pain and carry on with their lives. I don't seem to be of that stripe. It's not even noon yet and I'm already anticipating the evening shot. I think I need to work on my sense of humor. I'm sure there are funny things happening here. I told Bev that I'm starting to acquire the chemo-chic look. I'm pale white and I've lost almost twenty pounds. I look like a male Vogue model. Maybe that's funny. Shit, the fact is, the truth is, I'm full of self-pity. And why the fuck not? I deserve to indulge myself - and I think I will, without guilt. Hey, I've never been sick every single day for ten weeks in a row. It's hard, it sucks, I want out. But there're 38 more weeks to go and I ain't about to quit. What else can I say. You're damn straight I feel sorry for myself.

Empathy

2004-12-09T11:12:00.000-08:00

I just got off the phone with Nurse Vicky, who is my case manager at the Hep. C clinic. She calls every week to give me the results of my latest blood tests and to see how I am doing. I look forward to these calls, both because I want to see where all the numbers are and because Vicky seems like a very empathetic person. I know there's a real person speaking to me and someone who seems to understand just how hard this process is for the patients and how disruptive it is to our lives. I'm not sure exactly how it is I know that she gets it, but I always get off the phone feeling like I've been heard, and that she will follow up for me on any questions or concerns I have - and will communicate on my behalf with the doctor and get for me what I need from him. Nurses are like teachers, I think, the work they do is crucial and extremely demanding and thoroughly underappreciated and underpaid. Whereas the docs, for the most part, are distant and pompous and make a fortune. In my increasingly extensive experience of the medical profession, I've also found that most physicians are not, like Vicky, very empathetic at all. They keep their feelings and emotions at a distance. Probably that's the only way they can operate, seeing as many patients as they do - all of whom have their own sad stories. I'm sure it's hard after a while to really listen. You probably see only the disease and not the patient. And you prescribe treatment based on past experience and latest research, but again, not on the personal needs of the patient. I'll admit, right here, that I do have some issues with M.D.'s; my father was one and I know first hand the level of arrogance and conceit some doctors have about their roles. Questioning my father about any medical issue (or any issue at all) was tantamount to heresy - and could be physically dangerous. And I don't think I was alone in my fear and resentment. Doctors (some) tend to get their training confused with omniscience. They need to remember that only God has that ability. I don't expect my doctor to know everything and I can't accept it when he acts like he does. Physicians would be better off paying more attention to how the nurses deal with patients. Maybe medical schools need to offer a course in empathy. It's pretty damn important.

Anniversary

2004-12-07T14:21:00.000-08:00

Today is December 7th - Pearl Harbor Day, the first night of Hanukkah, and - our first wedding anniversary. A year ago today I certainly never expected that we would be in the situation we are now, nor of course did Bev. People, essential optimists that we are, tend not to believe that bad things can happen to us - we admit that they happen to other people, sometimes even friends and family, but it's highly unlikely they will strike us. We're bullet-proof, we think. Well, I'm here to tell you ---.
It's almost like we've had two different marriages so far - and in less than a year. The first eight months we were full of excitement and plans; hanging out, going to dinner, movies, parties. Discovering each other and our life together and how we wanted to live it. Then came the realization that this was not going to be life as usual. Even as I sit here typing away, I'm feeling increasingly woozy, not at all sure I can even last another ten minutes. I know Beverly didn't sign up to be a caretaker when she said, I do - or maybe she did. In sickness and in health and all that. And I've got to believe that were our situations reversed I would be trying to do for her all that she does for me - though some days I wonder if I could be as giving and selfless. And it's not like I didn't tell my sweet wife well before we were married that I had Hepatitis C, but I didn't tell her it had reached a critical stage. I didn't know. I told Bev and myself that my disease was in remission. That's what I thought was true. I didn't have any clear symptoms and I felt pretty healthy and vigorous. Went to the gym five days a week, did yoga, and dance classes and rode my bike and all that yuppie stuff that kind of makes us feel above the fray. But I was far from invincible and when one of my yearly blood tests came back with an elevated reading, it was time for a new biopsy, which indicated I was a stage four hep c patient, meaning my liver was essentially near the end of its useful functioning and left untreated would begin to decompensate - the gastroenterologist's term. You don't want to know all the awful ways it can begin to "decompensate." We looked for every way out we could imagine, but it was soon clear that we'd have to begin this almost year-long, tortuous treatment. We didn't know quite what we were signing up for - and are still discovering all the ramifications. It's kind of like signing up for the Spanish Inquisition. But here we are - getting through it as best we can, living with disaster, but living. I couldn't ask for a better partner in all this and I don't doubt for a second that we will come out of this stronger, if a bit bruised.

This Too Shall Pass

2004-12-06T11:55:00.000-08:00

One more week-end down, one more week (number 9) underway. Though this seems endless, a medieval cure at best, I'm proud of making it through this far. Two months is something - 11 months, though it often seems almost impossible, will be doable, I think. It's taken me this long to get to that realization. Up till now, I've doubted I could do it, been mostly scared if you want to know the truth, which I imagine you do. Otherwise, why bother with this. It is the almost endlessness of this treatment that gets to me the most. I can stand being sick, sort of, but what do you do when the sickness never ends. It changes from day to day - different symptoms at different times, but there's never a day or an hour when I can just relax and feel good, or uninfected. I said when I started this process that I would have to look at it like it was my job for the year. Undergoing chemotherapy is what I have to do, to figure out, to show up for. But, you know, even the shittiest job gives you a day off now and again.
Bev left me a card this morning (we're big on cards) before she left for her company meeting in Minneapolis, that said on the front "This Too Shall Pass" which felt kind of amazing since it was the expression my mother used all the time to apply to most everything that wasn't to her liking. She often said it to me when I felt sick or sad or just wanted to cut school for the day. Images of my Mom came flooding back to me on the wings of that card. She was the one who provided comfort, she was the one who made me believe that things actually would work out if I just kept trying. Of course, there were times when she was meaner than that, not at all comforting, more of an attacking force. But I choose not to dwell on that mother aspect these hard days. Now, almost every day, I have a feeling that I want to talk to my mother and usually move to pick up the phone to call her, before I realize that she's been dead for four years now. But still I feel she's with me. She's ready to provide the comfort I need, listen to my complaints, make me a bowl of chicken soup. Every boy needs his mother - especially when he's feeling sick.

To Sleep, Perchance to - you know

2004-12-03T11:11:00.000-08:00

What is better in this world than a good night's sleep? I'm not talking six or seven hours here. I mean the real thing - ten hours in a deep, enveloping, undisturbed slumber. The kind of sleep where you wake up completely refreshed and energized and ready to take on the world. Kids sleep like that. If my situation is at all typical of people my age, we don't do so well at sleep anymore. I know if I get six hours in, it feels like a triumph. And it's not unusual (at all) for me to sleep less than four hours in a night. Tossing and turning takes up most of the evening, with another few hours dedicated to existential musings. Now add chemotherapy drugs into that already confused brain of mine and my sleep becomes even more problematical. I'm beginning to feel like I'll never have one of those wonderful, deep, dream filled sleeps again. And speaking of dreams (isn't that a song title?), I find that my dreams these days, when I'm lucky enough to have one or remember one are also more troubled, or more disturbing than was usual. It's hard to distinguish dream from drug hallucination. As I finished a chapter in a book I was reading and let the volume slip to the floor in hopes of falling asleep, I instead found myself within the novel. I don't mean I was dreaming about the book, instead I completely slipped into the "reality" of that story. I was a character in it, dressed in the eighteenth century style where the book was set and living in a damp basement where Benjamin Weaver, the character I had become, lived. I was very frightened by the time I was able to extricate myself from it - and believe me, not at all rested.
What are dreams anyway? And where are we when we enter one? I think it goes deeper than simply the mind's processing bits and pieces of our everyday reality. I think there's a separate reality out there, a dream reality, that is very vital to our ongoing mental stability. I know I feel more complete somehow after dreaming; and considerably diminished when I go too long without access to that other world. I feel like I've missed out on some important and ongoing conversation. A person, me in this case, can't very well keep on without enough sleep, without dreaming. I don't know quite what to do about it. More drugs? Maybe. I'd do anything at this point. But what's the quality of sleep that you get when you take sleeping pills? I make up (since I haven't used them before) that you're just knocked out. And knocked out is not the same as asleep. I think what I'll do is stop thinking about it now. That certainly never seems to help and leads unfortunately to obsession. The surest way I know not to get to sleep is to keep thinking how you can't get to sleep. So, enough of this. It'll come, it has to eventually. Doesn't it?

If I Ain't Depressed, What Am I?

2004-12-02T14:02:00.000-08:00

I refuse to accept the idea that I am depressed. It's one of the few "side" effects of this chemotherapy that I have not been afflicted by - at least not yet, at least I don't think so. It seems sometimes like the doctors and case worker nurses want me to be depressed - it is the expectation. Right at the beginning of my treatment they wanted me on Prozac. But I just can't accept the terminology or the diagnosis of depression. I'm sick, I'm dizzy, I've lost my appetite, and I could go on. But does that make me depressed? It could, that's for sure, but it hasn't yet. It (my symptoms) are what is real for me right now. I'm not imagining them. And when I have a hard time sleeping or feel like crying, there are damn good reasons for that. I'm responding to something real in my world. It feels pretty normal. I've certainly been depressed in my life - and it was hell. I couldn't see any way out, didn't even have the energy to imagine a way out. Everything was dark and the only thing I could imagine doing was staying in bed with the covers pulled over my head. I'm not there at all now. I'm much healthier than that - even as I feel the weakest physically I've ever felt in my life.
So, back off. Don't try to make me depressed and keep your anti-depressants. I want to feel everything I feel - the good, the bad and the ugly. Hey, I know anti-depressants can be lifesavers in certain situations; If you need them, go for it, by all means. It's not my time. I want my grief and I want my pain, and I want my moments of transcendence. All pain is not neurotic, you know.

Getting Sick, Getting Well

2004-12-01T19:42:00.000-08:00

I almost didn't write a post today. Then I saw that someone had added a comment to my last posting - someone I didn't know who had come across the blog and seemed to like it and looked forward to reading new postings each day and said some other nice things, which made me feel very good. So, of course now, I want to make sure I get something in here every day. Actually, this whole blog thing is more for me than anyone else - of course. It makes me feel good to write every day, makes me feel like I have something to do other than monitor my boring symptoms. It feels like a job, the best kind of job there is - except that there's no money involved. I don't think I've ever truly believed I would make a financial living as a writer. I've made some money along the way and had some recognition, but I don't think that is ever the reason why people feel compelled to write. Self expression, in whatever form it takes, is good for the soul. Especially for us basically introverted types. Art allows me to say the things that make me feel like I'm part of a bigger experience than my own. I guess if you're Stephen King, you get to do it for money, but I would bet that King too writes for other reasons.
I've been thinking a lot these days about my father. He's been dead for fifteen years now, so I was somewhat taken aback to find his influence and power still so present in my consciousness. My dad was a doctor, a general practitioner, so it's not that unusual that I would think of him in my time of extended sickness and fragility. But it's not like he was a great comfort to me as a kid when I was sick or hurt. Much the opposite, in fact, was true. I could pretty much count on him not being there for me when it came to aid and comfort. For some unfathomable reason (at least unfathomable to me), my father didn't seem to believe in the efficacy of medicine or kindness or care to help people in need. When I would tell him that I felt sick, his response would almost always be, "Don't worry, you'll get better." Which, in the end, was true. I did get better - but, you know, that wasn't really what I was asking him for. I wanted him to care. I wanted him to tell me something that would make me feel safe. I wanted him to show me he cared about me, that he loved me. I think that's what we all need and want when we're sick. Yes, thank god for modern medicine. It's potentially saving my life. I think it will. But I almost never see my physician. He's too busy with other more important matters to deal with actual people. That's what nurses are for. I don't know where I'm going with all this. And don't even get me started on how I forever disappointed my parents by not becoming a doctor myself. It's a twisted tale, and doctors and family and being sick and getting well is much on my mind these days.

Things Can Always Be Worse

2004-11-30T11:12:00.000-08:00

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."

The Holidays Approach - Oi Vey!

2004-11-29T09:12:00.000-08:00

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?

Gray days and the NBA

2004-11-24T10:29:00.000-08:00

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.

Thanksgiving??

2004-11-23T11:33:00.000-08:00

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, Monday

2004-11-22T10:55:00.000-08:00

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 Night Fears

2004-11-19T10:37:00.000-08:00

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.

Side Effects

2004-11-18T09:23:00.000-08:00

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?

More Stuff

2004-11-16T10:48:00.000-08:00

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

Some Background

2004-11-15T09:39:00.000-08:00

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.