The Last One Standing

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

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.

More

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

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

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

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

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.