Thursday, April 21, 2005

The Last One Standing

My new address is:

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 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).

Wednesday, April 20, 2005


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.

Tuesday, April 19, 2005


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.

Monday, April 18, 2005


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?

Friday, April 15, 2005

Rising Tides

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.

Tuesday, April 12, 2005

The List - In Process

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.

Monday, April 11, 2005

Moving On

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.

Wednesday, April 06, 2005

The Last Month

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.

Monday, April 04, 2005

A New Week

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.

Friday, April 01, 2005

The April Fool

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.