Wednesday, September 12, 2007

More of the same


I haven’t been posting to the blog. It feels a bit like complaining to get up here and say: I had another lousy day. Am I losing sight of the prize? I am, after all, getting better from this treatment, even if I have to put up with fevers, low energy, sensitive skin, joint aches, headaches, and sometimes worse? And not to forget the round-the-clock schedule of drugs, both chemo poisons, and over-the-counter remedies that address my side effects.

Yes, my life is consumed by the details of complying with the treatment plan and dealing with its fallout. It’s not pleasant, but it’s what I have to do. I feel like an idiot savant, constantly chanting to myself: two Tylenol and two
Metamucil capsules at 10:00 am, two Advil at 4:00 pm, two Tylenol and two Metamucil capsules at 10:00 pm, Zofran at 10:30 pm, Temodar at 11:30 pm.

I will say this though: whoever dreamed up putting
Metamucil into capsules is a genius! The powder form of this “Psyllium Dietary Fiber Supplement” is one foul tasting treatment that I always shunned. Even the flavored varieties can’t mask the slippery, grainy, unpleasant texture. But the capsules are very effective, address a variety of conditions, and are easy to take.

I keep track of all my side effects and all the drugs I take in a spreadsheet that my medical team reviews. They, of course, can appreciate the minutiae of what I go through since it helps them put my and other people’s reactions into perspective.

But friends? Do they want to hear those details? I’m skeptical that’s what friends want to hear. In fact, I asked that very question last night when I visited with some friends.

They are creative types I’ve known as many as twenty-five years. It’s a free-flowing group of “attendees” who meet at the home of one woman nearly every two weeks. The hostess doesn’t drive at night, but she loves the company and has a comfortable home that accommodates it. The mostly women who show up usually bring their latest craft project to work on, and to share for critical fine-tuning. When they bring their husbands, those men typically fall asleep on the couch in another room, or visit with my friend’s husband. Topics around the table branch out to life issues and concerns. This “Group” has grown to be a family.

My dear friend has crafted a life around a medical condition that’s thrown limitations at her for over thirty-five years. She doesn’t complain about her symptoms. She hosts a potluck party!

“How are you?” they ask me when I enter the room. I show them my mediport and my portable IV. They are concerned that I was feverish earlier in the day.

“Are you really interested in this?” I ask skeptically.

“Yes,” they assure me. It puts a visual picture together with the words they’ve been reading here in the blog. It’s a reminder that I, their friend, continue to struggle with a problem that takes a different form every day. It gives them a sense of what to expect in the outside world with other people who might be more reticent to talk about these issues. It adds depth and perspective to the growing problem of cancer and chronic conditions in an aging population.


I’ve always believed that honesty is important. There are topics I can’t talk about publicly – religion and politics jump to mind. But this is one arena where I want to make a contribution.

5 comments:

SusieQ said...

Yes, we are interested in the gory details. You are helping us to understand the whole process.

Spreadsheet? And why not FoxPro? (gd&rvvf)

Ceil said...

Well, the truth, I suppose, is that most people don't have access to the information any other way. I hope I'm performing a "public service." :)

FoxPro is a VERY heavy hammer for this tiny nail of a problem (but you knew that...). Excel is my second favorite software application!

Anonymous said...

If it helps at all, let me give you another perspective. I edit a newsletter for my orchestra & chorus. I publish a lot of bios of members of the ensemble. Sometimes I get one that's really long, and ask myself what should be cut. I tend to leave in as much as possible because with a written medium, if someone doesn't want to read it they can skip it.

It's the same with what you're going through. If anyone doesn't want to read all the gory details they don't have to. But it's there for anyone who does.

-Barbara Peisch

Ted Roche said...

It's not "Too Much You." I don't want to bug you. "More of the same" is fine. Tell us you're hanging in there, even if it stinks right now. No news isn't good news; it's worrisome. So, "more of the same" is good news. Hang in there.

Ceil said...

Thanks for responding, Ted and Barbara. I love to know that people are reading what I post. I'm self-conscious enough to hope I'm not boring anyone to tears, but as Barbara points out, they just don't have to read it if they don't want!

I love you folks. And I'm glad I stumbled on a way to efficiently get information out to a lot of people at once.