Wednesday, February 21, 2018

Notes from the Home - February 21, 2018

I went to the Amos Cancer Center, Tuesday, to get my first infusion of Ocrevus. I left there not quite fully infused. Last year, Ocrevus became the first drug approved for treating primary-progressive Multiple Sclerosis. Late last summer, Dr. Verson ordered some blood work, which I thought was the first step toward getting the Ocrevus infusions. Whether I misunderstood, or someone dropped the ball, nothing happened. A few weeks ago, however, someone from his office called to set up an appointment for more blood work, this time to test for hepatitis B.

Two days after my encounter with the phlebotomist, a woman from the Cancer Center called to make an appointment for me to get the first infusion. We set the date for February 9. At 8:30 that morning, I phoned in my cancellation. I hadn't slept well, and my legs were weaker and wobblier than usual. Russ was going to provide transportation, and I was afraid he'd also have to give me a lift off the ground when I fell getting from the manual wheelchair into the car, and when I got out of the car at the Cancer Center. And getting there might be the easy part. The night before, I saw on a Facebook site of MSers who are getting Ocrevus that weak legs after an infusion aren't uncommon. Poor Russ, I thought, it might be easier for him to push me home than try to get me in and out of the car after the infusion.

Covenant Woods provides transportation to and from medical appointments on Tuesday and Wednesdays. My motorized chair fits nicely on the bus, too. But the Ocrevus infusions take several hours, and I needed to find out from Dennis, Covenant Woods' bus driver, the time I needed to be done in order to get a ride back to the Woods. "Four or four-thirty," he said. The following Tuesday, I called to reschedule the appointment. I gave her a quick explanation of my situation and told her I needed to be out of the Cancer Center by four. The best way to be sure they would finish with me by four-thirty would be to tell her I had to be out by four.

"Well, would Tuesday, February 20th, at 10:30 work?" she asked.

"Will I be done by four?"

"You'll be done by 2:30."

"OK, Tuesday the 20th at 10:30, right?"

"That's correct."

Dennis got me to the Cancer Center at the designated time. At 11:15 a young man, who will graduate from the Columbus State School of Nursing in the spring, stuck a needle in my arm, while the nurse supervising him complimented me on my excellent, easily accessible veins. Then another nurse hooked up a small bag of steroids to the IV and had me take a Benadryl and one other pill.

"We'll give that stuff a half hour to get into your system, then we'll start the Ocrevus," she said.

A few minutes before noon, the nurse was back and explained that the IV would start slowly and speed up at regular intervals. Doing a quick calculation in my otherwise empty head, I determined that between the IV and the hour afterward that they keep you for observation, I wasn't going to be out of there by four o'clock.

"If I'm not out of here before Dennis clocks out, I have no way to get home. This chair is nearly as big as my son's Aveo."

"You don't have to stay for the hour of observation," she said.

"This is the first time for me, and I know people sometimes do have difficulty after an infusion. I'd rather come back on a day when we can get an earlier start."

"What if we can get another ride for you?"

"That'll work for me, All I want is a way home."

"OK, I'll call some people and see what we can do."

A few minutes later she came back to tell me she had talked to Dennis, who told her 4:30 was the latest he could pick me up.

"As long as you get me out of here by 4:30, I'll stay."

"It's a deal," she said as she turned on the IV.

It all went well. I read some, slept some and read a little more. And I spent more than a few minutes looking at the IV bag to be sure the amount of Ocrevus in it was declining. At 1:45, my back started to itch. Not all of the back, just a streak below the shoulders, were my back met the chair. I couldn't scratch it, so I wiggled around as best I could to relieve the itching, The wiggling didn't produce the desired effect. And after ten minutes of it, I realized I was beginning to itch all over.

When a nurse came by, I told her about the itching. She lifted my shirt and looked at my stomach. "There are spots all over your stomach," she said and went to tell the other nurses. One of them called Dr. Verson's office.

"He said to turn it off and for us to keep you here for an hour to make sure you're OK," the nurse said when she came back. "And he wants you to call his office tomorrow to set up an appointment." I had difficulty processing what she said, I was getting woozy and felt as if I might pass out.

At 2:30, the Ocrevus stopped dripping into my bloodstream. Within minutes, I felt much better. For the next hour, I sat and watched the clock. Periodically a nurse came by to check the spots on my stomach. They were gone by three o'clock, and I was gone at 3:30.

I called Dr. Verson's office this morning, and I'll see him Friday at 9:30. When I called, the woman I talked to told me to come in at one on Friday. I then called Russ to make sure that would work for him. He said that was fine. Two minutes after talking to Russ, the phone rang. It was the woman from Dr. Verson's office. "He wants you to come in at 9:30," she said. Another Russ, and being an agreeable and flexible young man, he said he was fine with the new time. It will be interesting to hear what the doctor has to say.

*                    *                    *

I'm dropping things more frequently these days. It is frustrating, but picking up what I drop provides a little exercise and sometimes a sense of accomplishment and pride. Saturday, cottage cheese topped with some cherry tomatoes sounded like a good lunch. Getting the cottage cheese into the bowl was easy-peasy. And I had every reason to expect that getting the tomatoes on top of the cottage cheese would be just as easy. It was. But, as I picked up the container of unused tomatoes I dropped it. There were tomatoes everywhere, thousands of them, I tell you, thousands of them. 

OK, there were fifteen or twenty tomatoes on the carpet, but someone had to pick them, and that someone was me. With a steady hand on the joystick, I moved the wheelchair from tomato to tomato, reaching down and picking each one up. When I had them all back in the plastic container from which they had fallen, I surveyed the carpet, expecting to see a big red splotch, the remains of a tomato I'd unknowingly run over. But there were no splotches. I had cleaned up the mess without making a bigger mess in the process. Damn, I'm good.

Wednesday, January 31, 2018

What Would Granddad Think?

I never knew either of my grandfathers; they both died before I came along. Nonetheless, I often find myself thinking about my dad’s father these days. My grandfather was an extraordinary letter writer, and the letters he wrote to Dad in 1942 and 1943 are a family treasure. Dad gave the letters to Nana, and no Harris family gathering was complete until the letters were brought out and a few of them read aloud.

In one letter he said he grew up taking one bath a week. Then, “your mother” insisted he take two baths a week. And now, “your mother and Jane” were telling him he should take a bath every day. In the middle of another letter a page is covered in ink. On the following page, in the style of a play-by-play announcer describing a running back moving from one spot in the house to another, he explains how the ink got on the paper. One of the letters is an essay on the fanny.

The letter I keep thinking about these days begins, “The headline in tonight’s Sun-Telegraph is ‘Allies pushed back 5 miles in North Africa.’” (That is not a direct quote; I don’t have a copy of the letter and I’m relying on my memory.) My grandfather then told Dad that had the Allies pushed the Germans back, it would have gone unmentioned in German papers. Or if it was, it would have called an Axis victory. I don’t remember if he used the term “strategic redeployment,” but that is what he was getting at. My grandfather went on to tell Dad that press freedom was one of the things we were fighting for. That we were stronger because of our freedoms, including freedom  of the press.

So I wonder: what would my grandfather say about the current president and his calls to silence those who disagree with him?

Sunday, January 28, 2018

Curmudgeon's Day

Monday is Curmudgeon's Day, and I plan to properly celebrate the occasion.

Oh, yes, I’ll be cantankerous,
Nasty, mean and rancorous.
My words will all be slanderous;
My attitude so awfully cancerous.
And I’ll be feeling rapturous.
Telling folks they look cadaverous.

A man shouldn’t act that way;
Is that what you’d like to say?
Well, it doesn’t matter anyway –
’Cause Monday is Curmudgeon’s Day.

Saturday, January 27, 2018

A Stormy Night

As I got dressed this morning, I noticed a drop of dried blood and a small scratch on my right shin. How did that happen? It wasn't there seven hours earlier, when I got out of my pants and into bed. "Must have scratched it during the night," I thought. But, how? There was nothing to scratch it on. Perhaps I had an itch and scratched it. Perhaps. Given my lack of agility, though, the effort required to reach my lower leg while lying in bed is unlikely to be forgotten in a hour or two.

Wait. There was that kiss. A few minutes after midnight, I was awakened by a gentle kiss on the cheek.

"Who are you?" I asked the lady seated on the edge of the bed.

"Stormy," she said.


"Stormy Daniels. My name has been all over the TV news and the Internet."

"You're not that Trumpian trollop everyone is talking about, are you?"

"Yes. Yes I am," she said.

"What are you doing here? Why are you in my apartment?"

"Let me show you," she said, getting out of her clothes and closer and closer to me.

And for the next two hours, Stormy did show me. A lingering kiss left me ready to bask in the afterglow. But Stormy couldn't stay.

"I guess you've heard, The Donald gave me a check in the six figures after our little tete-a-tete."

"Well, I can give you a check in the three figures, as long as two of them are to the right of the decimal," I said.

"That won't be necessary. I feel like I should pay you."


"You ever look at The Donald's hands? How small they are? Well, they say a man with small hands is small somewhere else, too."

"Are they?"

"It's always been the case with the men I've known, And I've known more than a few men," Stormy said.

"Where do I rank among the men you've known?"

"There might be one or two as good as you. But in my experience there are none better than you."

Obviously, my leg was scratched when Stormy and I were passionately rolling around on the bed. That's my story, anyway, and I'm sticking to it.

Thursday, January 18, 2018

Notes from the Home- January 18, 2018

FAKE NEWS ALERT!!! Any current reports of me being full of shit are false, fake, bogus, counterfeit, fabricated, fictitious, forged, fraudulent, phony, spurious, and untrue. It is possible that I was full of shit last week, though I doubt. And, there is a chance, though small, that I will be flush with feces in the future. But for this week, any reports of me being full of crap are full of crap.

The flu stopped by Covenant Woods and nestled up to me. He was content to cause discomfort and considerable achiness for three days. But on Sunday, and especially Monday, he led me on a series of hurried, unpleasant jaunts to the bathroom. Four bowel movements in twenty-four hours, each one smellier and messier than the one before.

It was a shitty situation. Before going to bed Monday night, I cleaned off myself, the wheelchair, and sundry surfaces as best I could. Tuesday morning, I could not call Russ and ask him to pick up some sterilizer and deodorizer - he was sick, too, maybe because he had been to see me over the weekend. What was a boy to do? I turned to Alisha, who is the Covenant Woods' activities director. I do a little proofreading for her each month. The last time I proofed something, Alisha said if I ever needed something from the store, she'd be glad to pick it up for me.

Good to her word, Alisha did my necessary shopping. When she returned, she put the change on the table and showed me the Pine Sol, Lysol, Clorox Disinfectant Wipes, and Pro Chem Spotless she'd purchased. Then she proceeded to use them with a vengeance. It was as though the haz-mat unit was on the job. She even wiped the almost two-years worth of accumulated dust off my wheelchair. Wow.

As of now -Thursday afternoon - my biggest concern is getting my legs back to what was normal for them a week ago. Whether as a direct result of the flu, or perhaps because I stood up as seldom as possible for several days, the old legs feel older and weaker than before. Transferring from the wheelchair to the bed is now more difficult, in terms of both strength and balance. And while I haven't fallen while clinging to the counter as I pull up my pants, I keep thinking I will.

The left leg is not cooperating at all. Not that it ever did. In the pre-flu era, however, I could pick up my left leg and put it across my right knee. With it there, I put a sock on my left foot. After getting a sock on the right foot, I hoisted the left leg again, put it across the right knee and got my foot into appropriate trouser leg. With the pants started on the left, I moved to the right leg. Once trousered, I got the left leg off the ground sufficiently and at the proper angle to put my shoe on. There is a brace on the left shoe, which makes putting it on difficult in the best of circumstances. Warren and Curtis, the night security guys, have helped me every morning. Good thing, too. Otherwise I'd be sitting in bed all day.

This morning, I darn near got that sinister limb to get where it was supposed to go. If Russ is feeling better this weekend, I'll ask him to come over so we can work with the leg. Maybe we can get a leg up.

Thursday, January 11, 2018

Lust to Dust

One night when I was nearly drunk,
I sez, "Sweet Lass, ain't I a hunk."
She looked astounded,
Said, "You've come ungrounded.
Why you're a tub of flabby gunk."

That chick had lots and lots of spunk,
But would not join me in the bunk.
She said she was proper
And my plans came a cropper.
I guess I'll go become a monk.

Sunday, December 17, 2017

On and Ennui Go

The word "ennui" has been on my mind lately. Whenever ennui pops into my otherwise vacant skull, I think about it.  Ennui is the only word I can remember the exact moment I came to know it. Of course, there are a lot of words I know I learned while sitting in a class. I might recall the class where I picked up a word, but I wouldn't be able to relate the details of the moment the word became part of my vocabulary.

And many words work their way into my vocabulary as I read. But I cannot recall what I was reading when I came upon this or that word. The most memorable word in this category is "exacerbate". I must have been forty at the time that word got my attention. I have no recollection of what I was reading - book, newspaper, magazine, who knows? When I saw the word, I consulted the dictionary. Like so many other words I've looked up in the dictionary, "exacerbate" would have quickly fallen out of my vocabulary, except "exacerbate" suddenly became a hot word. In the papers and on the TV news, every situation was being exacerbated due to one thing or another.

There is no uncertainty about when and where I learned about ennui. It was a summer evening in the early 1960s, and Mom was sitting on the milk box by the front door, working on the crossword puzzle in that day's Pittsburgh Press. I stepped outside, sat on the door step, and began hassling her. "Do you need my help?" I asked several times. Finally, she handed me the paper and said, "OK, see what you can do."

I looked at the clues for the spaces not yet filled;  every one of them stumped me. So I moved to finding Mom's mistakes. She didn't make many mistakes, but there was always a chance she would. If she did, I wasn't likely to find it. But she made a very obvious error that day. Well, I thought she did.

"You goofed," I said.


"Right here."

"That's not a mistake," she said.

"Yes it is."

"No it isn't," she said, getting testy.

"Come on, E-N-N-U-I is not a word."

"It is so. It's 'ennui', and it means lazy or listless."

"Oh," I said, as I got up to go back in  the house and consult the dictionary. I was determined to prove her wrong. But the lexicographers agreed with her. defines ennui as, "a feeling of utter weariness or discontent resulting from satiety or lack of interest; boredom." That would be me these days. Maybe it is the short days. For some reason, nightfall coming early seems different this year. I can feel the darkness setting in, and it doesn't feel right, like the world, or at least my world, is contracting.

Except for one other year, the shorter days and the return to standard time never bothered me. Back on Myrtle Avenue, as the kids were growing up,I always thought dinner was better when the sun went down before we sat down. The four of us at the table in the well lit kitchen, our little island in the dark world. I don't know how Debbie, Russ, or Bethany felt, but to me dinner on a winter's night was family time at its best.

Short winter days and long winter nights lost their aura of family and togetherness when the nest emptied in 2001. But fall and winter's dwindling daylight hours never bothered me. I was working for the Star Beacon then and more worried about the chance of snow as I made my way to a high school gymnasium to cover a basketball game.

In the fall of 2007, I left the ranks of the gainfully employed, going from two jobs to no job. The short days of fall and winter came and went without notice that year and in 2008. Not so in '09. The clouds and rain moved into Northeast Ohio the day the clocks were turned back. The dreary, damp weather stayed for two weeks. If the sun managed to poke through for a minute or two during that time, I didn't notice. I was one sad sombitch. Then one day the wind shifted, the barometric pressure rose, and the sunshine and blue skies returned, lifting my spirits in the process. The clouds came back every few days, but so did the sun. My outlook on life didn't have a problem with that.

From 2010 through '16, the autumnal equinox and the return to standard time passed almost without my noticing. Not so this year, and I can't blame the weather this time. Oh, there have been rainy days, but there have been many more pleasant sunny days. Days so comfortable and beautiful that on my wheelchair trips through the Covenant Woods' parking lots my mind has often returned to Ashtabula and memories of those magnificent spring evenings in late May and early June when we'd go to Cederquist Park to watch Russ and Beth play Little League ball.

It isn't long, however, before the ennui returns. "Ennui", the word I learned while kidding around with my mother, has become all too meaningful to me almost sixty years later. Should anyone wish to give me a good, swift kick in the ass, you are welcome to do so. I promise to get out of the wheelchair and standup to make it easier for you.

*                    *                    *

I was taken aback when I typed "sombitch", and the BlogSpot spellchecker didn't throw a squiggly red line below it to let me know I'd misspelled a word. Thinking it might be a legitimate word that I was unfamiliar with, I checked the and Merriam-Webster websites. They were both befuddled and provided a list of words they thought I might have intended to ask about.

Then it was on to Urban Dictionary, which confirmed my belief that it is the way some men in the South say "son of a bitch." But it went on to say, the southern men who use it are mostly "over fourty." Even the BlogSpot spellchecker knows that ain't right. Urban Dictionary also said, "sombitch" is usually said in a loud, high pitched manner and can be heard all the way across the trailer park. I don't think I was that loud. Was I?

Notes from the Home - February 21, 2018

I went to the Amos Cancer Center, Tuesday, to get my first infusion of Ocrevus. I left there not quite fully infused. Last year, Ocrevus bec...