When I'm in Here...

Peggy’s prompt for April 4, 2009—20 minutes. “When I’m in here”

I’m in my bed—again. I’m in my bed a lot. Usually when I’m in here I’m nesting, except on the rare, bad times when I’m sick. But usually my bed is my refuge. I have my special mattress (memory foam), my pillows for backrest and to support under my knees, the recent issues of Newsweek, The New Yorker, and Vanity Fair—my current subscriptions, a selection of fiction and non-fiction books from the library and sometime brochures and newsletters that come in the mail. I have my nightly bedtime pills, a glass of water, my alarm clock (which I rarely set, but have to use during the night to check the time because I can no longer see across the room to the large-numeral-lighted-face electric clock. I have my assortment of wraps and special sleeves to apply to my lymphedema arm and hand. Plus assorted lotions, potions, and pills for things that ail me at various times. One or two or sometimes all three of my cats usually have found a spot to lie down on the bed—usually in a spot inconvenient for me, but perfect for them. Am I the operational definition of an old lady or what?

There was a time before I retired when I didn’t have much time in bed in the evening before I went to sleep, so on Sundays I’d get up early, fix my peanut butter toast and coffee, retrieve the three Sunday papers from the porch—the Galveston County Daily News, the Houston Chronicle, and the New York Times—go back to bed with all of it and make a morning of it. But now that I’m retired, I’ve developed this protracted transition from day activities to nightly sleep, and have dropped the Sunday ritual.

The one thing I used to do in bed at night and don’t do any more is……………..eat! Aha, caught you, didn’t I? I gave up eating after dinner a long time ago, so the chips, crackers, cookies, and especially my chocolates aren’t even bought anymore. And when I first quit the evening snacking, I did lose weight. But now the fat stays glued to my skeleton no matter that I’ve given up my snacks.

But when I’m in here, in this bed, with all my gear and my cats around me, I feel safe, I feel secure. I feel comfortable. I’m not thinking about what to do next; my day is done as far as chores go. Tomorrow is still a whole night away, and I am in here, nesting. Cluck, cluck to everyone.

Worn Ring

Peggy’s Prompt—worn ring—06/01/09

The worn ring circled my “ring” finger.
I often touched it unconsciously,
turning it round and round,
always in the same direction.

I did take it off, sometimes,
to keep from losing it or
from damaging it.

But mostly it was always there,
an artificial appendage
fraught with meaning,
hardly noticed in everyday life.

But now that it’s gone; its meaning
snuffed out by the judge’s gavel
and the notarized papers with
copies all around,

Now that it lives in a box
inside a box in a drawer,
instead of circling my finger,
I miss it.

I miss the sight of it, so predictable
I miss the feel of it, smooth and light,
filled with memories.

The white untanned circle of skin
on my finger is a flashing neon sign
to me and everyone else.
Not married, not married.

Stacked High

Peggy’s Prompt “stacked high” 01/08/10


She shoved another box on top of the one she had just stacked high about the concrete floor of the garage. Why was she keeping all this stuff, she asked herself, leftovers and mementos and presents accumulated over the fifteen years of marriage before Daniel’s death. It had never occurred to her that Daniel could die, just as it never occurred to her that she would re-marry within two years. Marry a man with 1 house (large), 2 boats (one sailboat, one powerboat), 3 automobiles (if you count the work truck) and 4 children (all grown). So she didn’t need her mismatched dishes, her second-hand coats and jackets, her beat-up pots and pans. But somehow it seemed disrespectful to Daniel to just throw them all away or leave them for Goodwill to pick up. Maybe in time she could part with them. Meanwhile, they’d be safe and secure out here in the three-car garage, stacked high off the floor in case of flooding. And no one would ever think to question what they held. But she’d know, and if she ever needed them again, well, she’d know right where to go.

You don't know me...

Peggy’s Prompt----082008 20 minutes “You don’t know me….” Cancer-related

“You don’t know me.” That’s what I thought when the nurse-in-training came to get me set up for my bi-weekly infusion. And, as luck would have it, I jinxed the blood-drawing part of the routine, drawing from my permanent Port-o-cath. First time ever that it has refused to give blood. She tried all the tricks in her bag—another bolus of saline, move your head to the right, now to the left, stop right there, don’t move, lean bac, lean forward, put your feet on the floor, another bolus of saline into the port, then through the routine again. I tried to cooperate, trying deep breathing, conscious relaxation of my muscles, but to no avail. Finally, she said “Does it matter which arm I use?” meaning “I’ve given up. I’m going to have to use the vein in your arm.” Another, more painful stick than the one I’ve already had into the Port-o-cath.
I wonder if it was my gut reaction, my antipathy, that caused the problem. There’s no good reason not to like this gal. It’s just that she’s not one of the “regulars”—the ones I talk to, the ones who know my cancer history, the ones who ask about Jonathan, the impending granddaughter, my plans for the holidays. This gal is more like a technician—cool, competent—well, except for not getting my port to give up blood. It’s not her fault. It’s mine. I’ve gotten accustomed to the comfort of the routine of “my” nurses. I’m like Jonathan, I don’t adapt immediately to change that’s not of my own making.
This is just a little taste of what “comfort” is to an ill person. The comfort of routine, of caring caregivers, of a sense of rapport with them. I need to try harder with this gal. Next time I’ll try to engage her in conversation, give her a big smile.

Evangelicals in Umtata

Evangelicals in Mthatha (Umtata)

We sat right on the front row, stage left, just a few feet from the slightly elevated stage on which the minister stood and the choir sat in folding chairs. All of us sat in folding chairs, as a matter of fact, hundreds of chairs arranged in long rows with an aisle up the middle toward the stage. No fancy sanctuary, this. From the outside you could tell that it was a big box warehouse. Inside was scarcely better. Some partial walls blocked off an office area, the children’s play area, and a kitchen. The rest of the enormous space was filled with those hundreds of folding chairs, all of them filled on this particular Sunday.

Margaret, my host, was sitting next to me and had steered me to this front row seat, where as one of maybe four white faces in the whole assembly I stuck out like a sore thumb. Perhaps that’s what Margaret intended. For the benefit of those further back, huge electronic billboards flashed the words to the songs, a la Mitch Miller and his sing-a-longs on long ago TV. Except Mitch only printed the English words, whereas at this evangelical church in Umtata, South Africa (soon to be changed to the more native spelling Mthatha) the words were in both English and Zulu, which is close enough to Xhosa to be understood by both groups.

There was a great deal of background recorded music, managed by a DJ high above in a skybox. The preacher, a handsome, trim young back man, probably in his 30’s, gave the sermon, leaving it to the associate pastor, a less handsome, less trim, older black man to handle the welcome and announcements, of which there were many, all pronounced in Xhosa, or Zulu—my ear couldn’t distinguish the two. The pastor, though spoke in English, although I couldn’t tell you a word he said, I was so busy sneaking looks to the side and behind to observe the various members of the congregation.

Most off the worshippers appeared to be poor, based on their drab clothes, although they were dressed Western-style—the men in open-necked shirts and coats, the women in skirts.

The choir. The choir. You have never seen such a choir. Only about 10-12 people, one of whom was an albino black girl with orange hair and huge glasses and a very big voice. I hardly noticed the rest of the singers, I was so mesmerized by her. No choir robes, just regular dress. They usually sang one verse of a hymn (not one of them familiar to me) and then the congregation joined in for several verses, guided by the giant tele-prompters overhead. The sound was overwhelming when everyone joined in. So much so that several people felt called to come forward to the front of the stage and contort their bodies and faces and cry out in tongues. Many were apparently habitual repeaters at this stage of the program as the audience members seemed to recognize them and would call out encouragement to them.

It got pretty hot in this un-air-conditioned warehouse, despite the giant fans blowing air around, and I began to sweat, even though I wasn’t joining in with the tongue-talking and the raising of arms toward heaven. I felt a little guilty as we filed out, as I had viewed the happening as an interested observer, and they had poured their hearts and souls out to God.

Diagnosis

Cancer related 043009

The radiologist put her hand on my arm. I don’t like to hold back with my patients, she said. What this means is cancer.

It wasn’t that I didn’t already suspect (know?) it in my head, even in my gut, but the sound of the word changed my world. The word “cancer” was as charged as if she had said “she died”, or “the divorce is final”.

The Book of Days turns a page when a diagnosis of cancer is made.

Tumor markers

I looked at the tumor markers last, after having noted that my glucose levels are even higher than before (139) and there is some calcification in a couple of heart valves, although they are functioning normally. And, as usual, my RBC’s are at the lowest end of the normal range. But then, the tumor markers. BOTH higher than the last three times—a good bit higher. Could this so-called lymphedema in my neck really be a tumor? Susan ordered a CT (a bit early, maybe a lot early). She clearly suspects something, and now the elevated tumor markers.
At first I just sat here very numb. Then all of a sudden I had to pee. Getting up to pee while hooked up to the IV infusion of Zometa was a distraction for a few minutes, but then, back to my seat and a look at the tumor marker results again. I think these results are the highest they’ve ever been.
Suddenly the bottom of my stomach drops. My body is registering what my brain has already realized. I’m consciously trying to prevent my mind from leaping ahead to the what-ifs—but my breathing is shallow and I’m feeling tense and tingly all over. Now my eyes are starting to water.
There’s a mournful hymn playing on the CD player. Rock of Ages played on a guitar—slowly, quietly. I’m here by myself in this chair, surround by the familiar chemo room sights and sounds, strangely comforting.
Every time I think about those tumor markers, my chest tightens. Whoa, Nelly. Don’t jump off the cliff yet. Wait to see what the “experts” say. Is this why I’m seeing Dr. Williams next time instead of Susan? Here I am connecting the dots, leaping to conclusions, preparing for the worst. Susan even mentioned that Dr. Williams might want to adjust my therapy (if the CT showed something). Obviously she’s suspicious of the lump in my neck, and so am I. And Dr. Marika is at a loss to explain why it’s not resolving. Could it be that it’s not only lymphedema? Oh, my. Oh, my.
Another mournful hymn playing. We Gather Together to Ask the Lord’s Blessing. Probably someone else would hear it as being played sweetly, or poignantly, but to me it’s mournful.
People are taking pictures today of people sitting in the chemo chairs. Something for the scrapbook, I guess, when they are all well again. I have no such desire.
Turn on a dime. Emotions, that is. From feeling good, although a bit curious and slightly apprehensive about this lump to now I’m in limbo again—semi-expecting the worst.
Damn this disease.

Recurrence

05/29/09

Today I spoke briefly to the woman in the chair next to me. She had taken her turban off and was scratching her fuzzy head. Itches? I asked. Yeah, she said. Coming in or falling out? I asked. Coming in, she said. We exchanged a few more words about “chemo” hair and then her husband (or the fellow with her) said, The first time it was about the same as before, but this time it seems darker. This is the second time? I asked. Yep, she said.

Twice. That probably means a recurrence. Boy, howdy, that brings me up short. Recurrence. That’s what I expect. The question is when. And would I go back through tough chemo again? Probably yes, mostly because of Jonathan and his unborn child. Strange how fate, in the form of a phone call—Mom, I’m having a baby!—changes everything.

Cataracts

Cancer related 042409

The last time I saw the eye doctor, we had a discussion about the cataracts developing in each eye, left more than right. Perhaps in another year, he says, they’ll be “bad enough” for Medicare to pay for removing them. You could do it now, but Medicare wouldn’t pay for it.
It seems strange to me to be planning on cataract surgery in a year or so, when every three months the tumor markers or the MRI could show new metastases. But then again, another person might have a heart attack right after cataract surgery. Who’s to know?
My mother had cataract surgery on both eyes even with an as-of-yet undiagnosed mass in her lungs—and Medicare paid. I was surprised then, and I’m still surprised, although pleased, because seeing clearly certainly added to the quality of her last months. So why won’t Medicare pay for hearing aids? I’d rather have Medicare refuse to pay for an experimental treatment in exchange for paying for hearing aids. But I suppose I’m in the minority here. And I haven’t really faced that decision yet, except in the mental “what ifs?”
Still, I lead an amazingly normal life at the moment, with the exception of this incredibly heightened sense of life. Life being experienced. Life as I have experienced it. But not much about life as I will experience it. Some of that, of course, is because of my age. I don’t have an infinite amount of time ahead of me as children think they do—or 50 years ahead as 20-somethings and 30-somethings think. My future, realistically, is unlikely to be more than a decade, at the very best. So that does have a way, as Mark Twain said, of concentrating the mind.