Back on February 27, I saw Dr. Verson, my neurologist, to discuss my Ocrevus experience. The doctor had all the details of my visit, a week earlier, to the John B. Amos Cancer Center for my first infusion of the first drug approved for the treatment of primary-progressive MS. I didn't get fully infused. About the time half of the Ocrevus had found its way into my veins, I got itchy and my blood pressure dropped. The nurses at the Amos Center called Dr. Verson, who told them to shut off the Ocrevus and keep an eye on me for an hour. Once the Ocrevus was stopped, I quickly got back to normal,
Before I left the Amos Center, a nurse told me Dr. Verson wanted me to call his office the following day. I did and made the appointment for the 27th. The doctor asked if I wanted to continue with the Ocrevus treatment. I did and made an appointment for Tuesday, March 6. In the back of my mind, such as it is, there lurked the thought that an infection might be lurking in my urinary tract. And as the sixth drew closer, the urine got cloudier.
When I saw Dr. Miller, my primary care guy, in the fall, he put a specimen jar in a sealed plastic bag so I could bring my urine with me when I go for blood work. On Monday, the fifth, I called his office, told them of my concerns, and asked if I peed into the cup at home Tuesday morning, could Russ then rush the sample to the lab. That was fine. Then I called the Amos Center and canceled the appointment for the sixth.
On Thursday, Dr. Miller's office called to tell me, yes, I had a UTI, and the doctor would send a prescription to the Publix Pharmacy in the Milgen Plaza. Friday morning, I got a call from a recorded voice, "Hello, this is your Publix Pharmacy in the Milgen Plaza. A member of your family has one prescription ready for pick up." Saturday morning, a member of my family - Russ - picked it up.
The instructions on the bottle read, "Take one pill twice a day." I considered asking Russ, once I've taken that one pill, how do I retrieve it in order to take it a second time? But he would have rolled his eyes, shaken his head, and said,"Oh, Dad," in a disgusted tone of voice. Instead, I took a pill and started doing the math. There were fourteen pills in the bottle, at two a day, that was a seven day supply. Ergo: the pills would last through the following Friday.
They did; right through Friday and the weekend and into this week. Now, I know I forget to do things once in a while, and I expected to find a pill or two left in the bottle after I took what should have been the last one Friday evening. After taking the "last pill," I looked in the bottle and counted six untaken pills. "That can't be," I said to myself. "Obviously, somebody at the Publix Pharmacy in the Milgen Plaza can't count." Monday evening, I went to get the last pill. I got the pill, but it wasn't the last one. After I took it, there were still three pills in the bottle. "Damn things must be reproducing," I thought.
Wednesday morning, I took what should have been the last one for the third time. Strangely enough, it was the last one. So, now the pills are gone, and, from what I can tell, so is the UTI. Monday, I'll call the Amos Center and get an appointment to finish what was started all those weeks ago.
Friday, March 23, 2018
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 call.to 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.
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 call.to 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?"
"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."
"Huh?"
"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.
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?"
"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."
"Huh?"
"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.
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.
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.
Subscribe to:
Posts (Atom)