Thursday, March 31, 2005

The Big Boost

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.

Tuesday, March 29, 2005

Mo Bettah

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?

Monday, March 28, 2005

Weary

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, March 25, 2005

Friday

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.

Thursday, March 24, 2005

Musings

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.

Tuesday, March 22, 2005

Death to the Virus

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.

Monday, March 21, 2005

Publish or Perish

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.

Friday, March 18, 2005

Shabbat

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.

Wednesday, March 16, 2005

Let it Rain

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.

Tuesday, March 15, 2005

Endless

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.

Monday, March 14, 2005

Getting The Word Out

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

Friday, March 11, 2005

Today

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.

Wednesday, March 09, 2005

Exposure

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.

Tuesday, March 08, 2005

Living With It

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.

Monday, March 07, 2005

My Good Day

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?

Thursday, March 03, 2005

Mr. Sunshine

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.

Tuesday, March 01, 2005

Hooray For Martha

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.