A BIT OF ADVICE ON SURVIVING YOUR MEDICAL SYSTEM – Marilyn Armstrong

I’m alive for two major reasons:

  1. Because I didn’t take a lot of advice I was given. I had been misdiagnosed and had some bad doctors.
  2. Having learned my lessons the hard way, I did my homework and sought out the best doctors for whatever needed to be done.

In earlier surgeries, I tried to make life easier for people to visit me, including a working husband. Now, I find the best, most respected surgeon … even if he or she is a long drive from home. It’s my life on the line.

Dealing with breast cancer in both breasts — two unrelated tumors — and ultimately getting Boston’s best surgeon and plastic (rebuilding) surgeon was complicated, but I found a doctor who was a friend of Garry’s brother (who lives in Minnesota, but the doctor lived in Boston). The “local” surgeon had 30 surgeries and told me what I was going to do. No choice. She believed she already knew what I needed.

I spent a month finding someone with hundreds of hours who was head of the women’s surgery unit in Boston. It was a very nerve-wracking month hoping cancer wouldn’t grow much while I sought the best doctors I could find.

There is a lot of advice I wish I had gotten but didn’t. Instead, I got some excellent advice from myself.

The most critical information I can give you is to make sure you are using the best doctors and hospitals. Local doctors may be able to set a broken leg, but for anything more complicated, they might kill you if you let them.

I took my own advice which is how come I’m here to tell the tale. I’m pretty sure if I hadn’t been my most powerful advocate, I’d be an ex-blogger.

This is my best advice. 

Life is unexpected. Shit happens. Cancer, heart issues, diabetes, arthritis. You name it, we get it. No matter how well you take care of yourself, you will at some point require medical care, maybe surgery, maybe other stuff.

Regardless of convenience, understanding the quality of the medical facilities within driving distance — even extended driving distance — are critical to surviving.

Do the research. Find out what available medical facilities and associated doctors and surgeons and support services are reachable. If you have to drive a considerable distance to obtain the best services and people, do it. Survival trumps convenience.

Your life is on the line. I’ve been there, done that, and lived to tell the story. It is absolutely worth it. You are worth it.

THE LONG ROAD

Recovery, by Rich Paschall

Bill was to report to County Hospital at 10 AM so he had to hustle through his morning routine, if you could call it that.  He slept until the sun woke him up, so he barely had an hour to wash his face, shave, get dressed, make coffee and leave the house.  In his usual haphazard fashion, Bill accomplished his tasks on time.

From the kitchen window he spied clouds that might roll in from the west, but nothing could erase the shine from this day. A goal had been met and Bill would have the honor of walking the winner across the finish line.  But despite his bright attitude, Bill grabbed for the large golf umbrella on the way out the door.  No, Bill did not play golf.  He just never knew when there might be a need for such a large umbrella.

Clouds rolling in

Everyone seemed to know Bill when he arrived at the hospital.  He had been making regular visits there for months, and chatting up the nurses and interns along the way.  Now he only had time to smile and wave as he made his way to the fifth floor.

In room 502 a nurse was assisting the patient in getting ready to leave the rehabilitation floor to head home.  Slowly he dressed, needing some help from others as he went.  When he was all set, the nurse helped him to stand, and after a minute on his feet, to sit in the wheelchair.  His personal items were stuffed into two plastic bags marked “Patient Belongings” and a small plastic tub, which was used a few times for washing up, was filled with a small half used tube of toothpaste, a cheap toothbrush, a small unopened shampoo bottle, a half bottle of mouthwash and some hand lotion.

The patient, a retired Industrial Planner from the Midwest, had arrived rather unceremoniously  three months earlier.  Paramedics brought him in after collecting him from the floor of his screened in patio.  A neighbor had spotted him and another neighbor arrived with his first name.  A medical investigator actually discovered his last name by visiting the home where he was found and looking on the mailbox.

Now the entire staff on the fifth floor of County Hospital knew Harold.  Although he said very little due to his condition, nurses and therapists liked to stop in to have a little chat.  For the first month, Harold could say nothing in return.  As time progressed, he began to react more to the comments with a nod, a smile, or even a word or two.

He had spent the first week at County down stairs in ICU.  For the second week he did little but lay in bed in 502.  Sometimes someone would turn on the television, but it was doubtful Harold was aware of it most of the time.  After that, the plan was put in motion.  It was not the plan of the supreme Planner, but one on which the rest of his life depended.

It took many helpers to carry out the plan for Harold.  A physical therapist was brought in to get Harold back into motion.  He worked his arms and legs and soon began to prompt the patient on which action to make.  When he was quite ready, the therapist would take him to the activity room where Harold would sit and roll a large ball across the room to the therapist who would roll it back.  After that there was standing and walking.  By the third month, Harold moved to the stairs.  It was a narrow set of three with railings on both sides to grab.  He went up to the top, then down the other side.

As movement improved, Harold was taken to a room set up like a kitchen.  There he would practice opening jars and bottles and sometimes even cans.  It was a struggle.  In the third month he would prepare his own lunch.  It was soft foods which he sometimes could not eat.

From week three a therapist came to teach swallowing.  Weeks of exercises lead to attempt at swallowing thick liquids.  Water and coffee were no good unless thickener was added.  Harold looked at the therapist with a bit of disdain every time she poured thickener into a good cup of coffee.  In truth, he could barely swallow the liquids when his time at County was up.

Another therapist worked on speech.  Harold found it strange that someone must teach him how to shape his mouth and exercise his throat for sounds in order to say words again.  It was not perfect after three months, but at least he could speak and be understood.

The long road home

Bill arrived in 502 with all of the enthusiasm of a relative welcoming someone back from the dead.  His smile was even larger than the patient’s, who still was working on his facial muscles and reactions.

“Ready to break out of here?” Bill said with a laugh.

Harold nodded slowly.  He actually was not sure he was ready, but he was certainly glad to be going home.

“OK then, I guess we will just roll you out of here, since they will not allow you to race through the halls,” Bill blurted out, amused with himself.

A member of the hospital staff rolled the patient to the front door and Bill pulled his car right up to the front.  They both had to help Harold get into the car, as his range of motion was limited.

The hospital worker handed into Harold a cane, the kind with four feet on the bottom.  “I guess you will be needing this for a while.”  With that, the two retirees drove away.

Leaving the hospital was not the end of the journey for Harold.  It only took him part way down the long road.

 

 

 

A TAP ON THE SHOULDER

When Hope Pays a Visit, Rich Paschall

Bill woke with the Florida sun proclaiming the new day, as he did on most days. He did not set an alarm clock, it was against his retirement protocol. Instead, he waited for the room to brighten with the energy of a new morning.

A new morning

A new morning

As he wandered through his house, getting ready to meet the world, Bill thought of what he would do that Friday. It seems he had been on a futile mission all week. Nevertheless, he would try again, and give it just one more chance. It felt like the least he could do for his friend.

Bill’s morning routine could not exactly be described as a routine.  Rather it was haphazard at best. He went to the washroom. He went to the closet. He went to the kitchen to start coffee. He went back to the washroom to shave. He looked again in the closet for what to wear and he went back to the kitchen for a cup of coffee. It took him over an hour to get ready to start the day, but that was Bill’s retirement plan. In other words, there was no plan.

His neighbor Harold, on the other hand, always had a plan. His time seemed to be allocated to the minute. While Bill liked Harold, he was not fond of the rigid lifestyle. That was no way to retire, Bill thought. Of course, it all did not matter now.

At the beginning of the week, Harold was found lying on his screened in patio and carted off to the local hospital, just a short distance away. It was not unusual for the Emergency Medical Technicians to pick up old timers in this part of Sarasota County, but it was still a shock to the few who knew Harold. Bill was one of those few.

Although a daily purpose was never part of Bill’s retirement goals, he nonetheless scheduled himself into a visit to the county hospital every day in a vain attempt to learn something, anything, about Harold’s condition. He was not immediate family and he was not named on any medical documents, since Harold, Planner Supreme, had no plan for this life-altering event. So Bill had learned nothing all week-long. Still, he could not settle his mind over the thought of Harold just falling over on his patio. So he kept trying to get a medical update.

When coffee was gone and toast was eaten, Bill was ready to make the trip to the county hospital. He stepped out into the Florida sun to find the day was already hot and humid.  Neighbor Mabel Crockett, would tell anyone who would listen that “the air was so think you could cut it with a knife.”  And so it was exactly that.

Bill hopped into his car in the driveway of his townhouse and hoped that the air conditioner would be at work right away. He was a bit disappointed at that, but he did not have far to go.

He arrived at the parking lot that was just two dollars for patients and visitors for four hours. “Don’t forget to have your ticket validated,” the guard warned Bill. If he forgot, the charge was double. Bill did not seem to care too much about that.

He entered by the Emergency Room and walked past the Trauma Triage and down the hall to the main lobby area. There he walked right up to the same receptionist who greeted him every day that week.

“Yes?” the elderly receptionist said with a sigh. She recalled Bill immediately and was prepared to go through the routine again.

“I am here to see my friend Harold. He came in through Emergency on Monday.”

“I know,” she said with a tired sound. It is the same sound that came with all of the disappointing statements she must give to visitors. “I’m sorry,” she continued. “Your friend is in intensive care. I can not give out information to anyone but immediate family.”

Bill started with his usual response, “But I might be…”

“I know, sir, and I am very sorry. It is the regulation and there is nothing else I can say,” the grey haired woman proclaimed with a heavy dose of sadness.

They stared at each other for a moment when Bill finally conceded. “I understand,” he said with a bit of a choked up sound. He could understand the rule, just not the dogmatic enforcement in this circumstance.

Bill started back down the hall toward the exit by the Emergency room. He passed pictures of important donors, including the Ringling Family of Circus fame. There were also paintings of peaceful ocean scenes that would seem to go with the best rooms at a Holiday Inn. Bill noticed none of it all week-long.  He just knew how long the walk would take to the exit.

As he got half way down the hall, Bill felt a tap on his shoulder.  “Excuse me,” a voice announced. “Excuse me, sir.”

Bill turned around to find the elderly receptionist right behind him.  She seemed a bit out of breath, probably from her pursuit of Bill.

“I am not supposed to say anything,” she said softly, as if she was telling a big secret, “but what are they going to do?  Fire me?  I am a volunteer.” At that, Bill saw her first smile of the week.

“Your friend is doing better,” she stated, “And they should move him out of Intensive Care soon, maybe tomorrow.”

Bill grabbed the old woman and gave her a big hug. Tears formed in his eyes as he told the receptionist, “Thank you so much!”  This was followed by another big hug.

So Bill thanked some woman he didn’t know for some news about a neighbor he hardly knew. The news itself really wasn’t anything at all, but it made Bill’s day complete.

Note: The next “Harold story” appears Friday.
Previously:  “Missing Monday,” “Sunshine, Spring Training and Survival,” “Wednesday Wondering,” “Waiting For The Story To Continue.”

A QUICKIE – Marilyn Armstrong

We are home. Garry’s surgery went very well. All the pieces are in place. Owen and I got to see the x-rays and you see the tiny coil that will send sound to his brain and the magnets that will keep the apparatus on his head.

Garry in hospital, not quite out of anesthesia yet, but getting there. From Owen’s iPhone.

He has a BIG cup of coffee, which he needed, took a bunch of ibuprofen for a headache. I fed him yogurt and fresh fruit and he’s watching a baseball game.

He is tired. I am tired. Owen is tired. But it happened. Two weeks to finish healing, then another couple of weeks for the healing to really finish healing, at which point all the technology gets put in place.

Thank you to everyone for caring. This really IS magic.

GARRY’S COCHLEAR IMPLANT IS TODAY – Marilyn Armstrong

By the time you read this, we will be at the hospital and quite probably surgery will be underway or even finished. I guess it depends on what time zone you’re in.

This is exciting stuff. Nervous-making, too. It will be at least 5 weeks until he is out of bandages and fitted with all the technology.

Remi, Garry, Tom, and sunshine

After that, it will take a few more weeks while we wait for the magic to work. The technology doesn’t produce “natural” sound. It is essentially electronic, yet the brain converts it into “real” sound. Or, more to the point, makes it sound like whatever sound we recognize as “natural.”

How it does the brain do that? No one really knows for sure. It just does it. Why? That’s another thing we don’t know. It’s a little miracle in its own right.

What we know for sure is that it happens. At some point during the first few months, the brain converts those “electric” impulses into what it “knows” as “real” (normal) sound. For some people, it happens very quickly. For others, it takes a longer and there’s no predicting which way it will go. The important thing is understanding that it will occur and when it does, its magic time.

For Garry, it has been a lifetime waiting to hear. It’s also going to mean some big changes around here. For one thing, I’m going to have to stop muttering under my breath. For the first time in our lives together, he will be able to hear what I’m really saying.

WELCOME! LET US MAKE THIS EVENT STRESS FREE! – Marilyn Armstrong

RDP # 49 – WELCOME


Nurse: Welcome to the University of Massachusetts hospital! We are here to make your experience as comfortable as possible.

We’d like to get started by asking you to give us the identical information we required from you on your previous pre-op visit. Yes, I know, it’s in the computer, but we need to see it. Again. We feel doing everything at least three times will lower your stress levels and help us avoid working on the wrong piece of you.

Just kidding. That never happens.

I know we asked you to not bring your wallets or valuables. We apologize for that because we really meant was don’t FORGET to bring all your paperwork and of course, your wallet. So now, would you please give us your driver’s license, medical card, and if possible, a third identification displaying facial recognition?

Entry

No, I’m sorry. Your wife assuring me that this is you would not be “official” enough. If you didn’t bring the information we asked you not to bring, don’t worry. We’ll reschedule the whole procedure in another few months.

We’re sorry if we got in touch with you so late yesterday you had trouble arranging a ride to and from the hospital, but as we like to put it, “that’s not our problem.” We do the medical part. You work out the rest.

Nurse: Now, Mr. (pause) (looks at paper) Mr. Armstrong?

Me: “Speak up. He can’t hear you.”

Nurse: We’d like to see all your medical papers, listing all the medications you currently take, have taken in the past, or might take in the future. Also, your medical card and another form of ID that includes a picture. A driver’s license perhaps?

You’re trying to explain that you were merely following our printed directions? Like on that paper you are waving in the air?

We didn’t really mean it that way. We omitted a word. We really meant to say you should NOT FORGET to bring all your paperwork with you.

Hospitals get so busy, you know?

NOT FRANTIC – THE ONGOING MEDICAL MESS

NOT FRANTIC

The past few weeks have been intense. I lose track of time. Retirement tends to make our days and weeks run into each other seamlessly. It can be difficult to remember when something happened — whether it was yesterday or a week ago.

I generally don’t mind the streaming life we lead. It’s peaceful and I’ve grown fond of our quiet life in the country.

Photo: Garry Armstrong

The medical stuff, though, has lent a level of pressure and complexity that has made me more alert. The first was the realization that the hospital we supposedly depend on is a genuine, card-carrying mess. It’s not just me saying so, either. The Internet is full of upset people who have registered complaints and never had them addressed. Nurses assure us that the hospital is “atrocious,” which isn’t the word you want used to describe your primary medical facility. This wouldn’t be such a big deal for me because I have my cardiologist and oncologist at other facilities. I am graced by Blue Cross’s PPO for Medicare patients which lets us use any doctor and hospital.

While I’ve been getting aggravated about my own little issue, I’ve been getting more worried about Garry’s cochlear implant. We have only seen the doctor at UMass. There is more I don’t know about this procedure than I ought.

There are many ways to do it. I haven’t done my homework. Meanwhile, putting Garry in the hands of the people at UMass? If I can’t trust them to take a simple message, why would I want to put my beloved into their hands?


Hospitals aren’t about doctors. The people who run hospitals are receptionists, office managers, nurse’s aides, and nurses. You don’t see doctors much. They come, perform surgery, drop by to tell you you’re fine (or not fine or will be fine), but they are rarely visible on a hospital floor. All  your daily business will be managed by the underpaid, overworked, and often foreign-language-speaking minimum-wage workers who slouch your way when you press that “I need help” button.


I’ve been overdosed with medication to which I’m allergic despite my urgent warnings. Found myself with no functioning lungs and a stopped heart — information that was conveniently never written into my records. Hallucinating from morphine, to which I am allergic.  Fed food guaranteed to kill me if I was foolish enough to eat it.

Why?

Because nurse’s aides in most big hospitals don’t speak or read English. The doctor’s messages are meaningless to them. They have no idea what they are doing because no one trained them. And some of them just don’t care. All they want it a paycheck and to get off their tired feet.

They are greatly overworked and deeply underpaid. What do their bosses expect will happen? Are you really going to get top quality service from these downtrodden people?

Only at Beth Israel were real nurses attending me. Everywhere else, my interactions were with aides and orderlies and occasional a receptionist at a desk somewhere. Conversations were with rude, short-tempered women (sometimes men) who followed “rules” that could kill you because the human mouthing “the rules” didn’t care if you lived or died. The rules were the important part. They were trained to follow the rules. If something went wrong, well, no one can blame them. They followed the rules. They did what they were supposed to do. If there was collateral damage — like a few deaths here and there — oh well. Oops.


No hospital will ever be better than its lowest paid, most exhausted worker. If you can’t improve the quality of your staff with intelligent training, your hospital will always be a horror show for patients.


I should be frantic and would be, but my Blue Cross Plan gives me choices. My alternatives will be less convenient, but at least we will feel safe.

Safe seems the place to be.

HARD DAY WITH CROCUSES

Yesterday was a long day. Between the telephone all morning trying to arrange a simple doctor’s visit — then going off to find out if I have cancer again (if you’ve had it once, you always wonder if it will come back), I was well and truly done by the time I got home.

I know I must be improving, though. A year ago, a day like today and I’d be barely able to crawl into bed. Now, I can manage to put together dinner, even eat dinner. I’m tired, but I’m still human. It may not seem like much to you, but it’s a big deal for me.

Garry thought I should write to the hospital and tell them it had a few issues it needed to address. It’s the only big hospital in the county and it is important not only to us, but to every family in the area. It’s not like Boston where you have 20 good hospitals at your doorstep.

I agreed with him in principle, but quickly discovered UMass doesn’t actually have an area were you can comment about “customer service” issues. The internet is full of complaints they’ve yet to answer. There are a lot of people upset about it. It’s infuriating to have just one really good local hospital and so many problems. There’s no reason for it, either.

They have a serious communication problem.

So I wrote to the head of the hospital and its PR consultant. I casually mentioned Garry and they casually called me back in less than half an hour. I’m pretty sure I’ll get to see a neurologist. Pretty sure. Not positive, but at least I feel I have a better grip on it.

Between UMass Memorial, Dana-Farber, and a trip to the grocery, we came home beat. I believe this was a productive day, but I am exhausted. Every part of me hurts.

I’m going to need a long sleep to get myself glued together again.

The best news of the day? We have flowers. Crocuses and the shoots of day lilies to come. And it was warm enough to go out in a light jacket. Spring really is coming, finally. I have proof!

A LITTLE TIME WRINKLE – THE TEST AND APPOINTMENT THAT NEVER HAPPENED

Just a little wrinkle …


The hospital said they didn’t get the order from the doctor and cancelled my appointment. They said they had talked to Tracy and she was supposed to call me. It turns out, they did get the papers, lost them or misplaced them — and possibly, forgot to write the appointment in their Big Book. 

Sip your Futili-Tea and have a cookie. 


This happens an awful lot with this hospital, though it has happened at others. Hell, I went to one hospital that was famous for working on the wrong part of the human in surgery, so when you went in, they took a big, black marking pen and wrote “NO NO NO” on all the parts which were not supposed to get repaired, and “YES, THIS ONE” on the piece due for repair.

I’ve gotten the wrong (potentially deadly) meals, drugs to which I am allergic. Drugs that nearly killed me. And, you can’t pump me full of real opioids — especially morphine — and expect my lungs and heart to function. I know they won’t work. My favorite moment of this was at the Brigham when I refused to use the morphine pump, so they stopped asking, removed the button and set it to just keep dripping.

Then they had to come in and restart my heart. That was fun. This was merely annoying.

The Front Door at UMass Memorial

The doctor’s visit was supposed to be a neurology chat and an EEG (electroencephalograph), but it didn’t happen because the hospital said Tracy at the doctor’s office forgot to send the order from the doctor and then forgot to tell me the appointment was cancelled.

Except Tracy had the copy of the faxed order she had indeed faxed on her desk when I called, she assured me that no one had contacted her. She said a few words that were unladylike. “They do this ALL the time. They are driving me crazy!”

I wouldn’t mind since no one tried to kill me, except it’s quite a haul to the University of Massachusetts Memorial Teaching Institution, also known as UMass or UMM. It’s a huge facility — the primary medical teaching facility in the state. Certainly the largest. It’s a complete hospital with every kind of department you might imagine — and the only really good hospital in Worcester. There’s nothing wrong with their care — other than not having enough people to manage and the worst software in the world.

Garry had a lot of work just to clear the snow off the car before we could leave the driveway, so he was tired before we got there. Also, we are permanently lost, no matter where we go. That never helps.

Getting to the hospital is easy. Go to Worcester. See those giant buildings? That’s the hospital. Next, you have to locate the building. Not so easy. There are dozens of parking lots, driveways, multi-level parking garages — not to mention valet parking services for each main building.

Buildings are numbered differently, depending on which side you are on, so 55 Lake Avenue North is really four (five?) buildings, depending on your approach and there’s a lot of driving around in circles to discover what could be considered “the front door” for wherever you are trying to go.

Maybe that’s the front, but it might be a different building. You won’t know until you’ve parked, gone inside, talked to “Information” and had them explain where you might go next.

I can’t walk a long way and I won’t use a wheel chair yet. The only place I always use a wheel chair is at the airport. Everywhere else, I walk. Slowly and painfully, with a lot of wheezing and whining, but I do it anyway. To park, we use the valet service because it’s at the front door and by the time we get there, we’re both bushed.

It used to be free, but now it cost $7, which is hefty for this area. That’s only a bit less than they charge in Boston. They probably use the same company, especially because all the hospitals now work together in large groups. This is better for us, the patients because if the specialist you need isn’t here, there’s an affiliate that has exactly the one you want. Most of the time.

The real craziness starts when you get inside and need to close in on the specific office or area where your doctor and the machinery he/she uses is located.

The Lobby is always in the middle of the building. There are maybe a dozen elevators that go to different levels — up and down. To get to Neuro-Diagnostics (Neurodex), I needed Elevator B, down two levels to Level A, then a long slow walk around corners and through a maze of hallways.

The woman ahead of us in the information line was Chinese or maybe Korean. Regardless, she was probably my age or a little older and her English was not too good. She was having a lot of trouble comprehending Elevator B and going down.

“Down?” said the elderly woman.

“Down,” assured the information lady. The poor woman looked so lost. I wonder if she ever found her way. If she had waited, we could have gone together, but at that point, I didn’t know I too needed Elevator B and down (two stories) to Level A, followed by a long complicated walk through many hallways.

We eventually found Neurodex, but there was no appointment. This was the “short” day at the my own doctor’s office, so everyone there was gone. If I were serious about omens and portents, I would assume The Universe was telling me to forget the whole thing.

I also took some pictures. Because I was outside,  had a camera. Figured I should do something worthwhile. Then we went grocery shopping. Because — why not? Got gasoline,  groceries. I remembered how much I love the way our town looks in the snow. I know everyone complains about the dirt at the edges of the road, but I love it, the way the dark snow in the road moves up into the white piles of it all over the Common. Every building is topped with snow.

I just wish this had happened in January when I was ready for it. Oh, wait. It did happen in  December, January and February. Sometimes, it’s a long winter season.

A TAP ON THE SHOULDER

When Hope Pays a Visit, Rich Paschall

Bill woke with the Florida sun proclaiming the new day, as he did on most days. He did not set an alarm clock, it was against his retirement protocol. Instead, he waited for the room to brighten with the energy of a new morning.

A new morning

A new morning

As he wandered through his house, getting ready to meet the world, Bill thought of what he would do that Friday. It seems he had been on a futile mission all week. Nevertheless, he would try again, and give it just one more chance. It felt like the least he could do for his friend.

Bill’s morning routine could not exactly be described as a routine.  Rather it was haphazard at best. He went to the washroom. He went to the closet. He went to the kitchen to start coffee. He went back to the washroom to shave. He looked again in the closet for what to wear and he went back to the kitchen for a cup of coffee. It took him over an hour to get ready to start the day, but that was Bill’s retirement plan. In other words, there was no plan.

His neighbor Harold, on the other hand, always had a plan. His time seemed to be allocated to the minute. While Bill liked Harold, he was not fond of the rigid lifestyle. That was no way to retire, Bill thought. Of course, it all did not matter now.

At the beginning of the week, Harold was found lying on his screened in patio and carted off to the local hospital, just a short distance away. It was not unusual for the Emergency Medical Technicians to pick up old timers in this part of Sarasota County, but it was still a shock to the few who knew Harold. Bill was one of those few.

Although a daily purpose was never part of Bill’s retirement goals, he nonetheless scheduled himself into a visit to the county hospital every day in a vain attempt to learn something, anything, about Harold’s condition. He was not immediate family and he was not named on any medical documents, since Harold, Planner Supreme, had no plan for this life-altering event. So Bill had learned nothing all week-long. Still, he could not settle his mind over the thought of Harold just falling over on his patio. So he kept trying to get a medical update.

When coffee was gone and toast was eaten, Bill was ready to make the trip to the county hospital. He stepped out into the Florida sun to find the day was already hot and humid.  Neighbor Mabel Crockett, would tell anyone who would listen that “the air was so think you could cut it with a knife.”  And so it was exactly that.

Bill hopped into his car in the driveway of his townhouse and hoped that the air conditioner would be at work right away. He was a bit disappointed at that, but he did not have far to go.

He arrived at the parking lot that was just two dollars for patients and visitors for four hours. “Don’t forget to have your ticket validated,” the guard warned Bill. If he forgot, the charge was double. Bill did not seem to care too much about that.

He entered by the Emergency Room and walked past the Trauma Triage and down the hall to the main lobby area. There he walked right up to the same receptionist who greeted him every day that week.

“Yes?” the elderly receptionist said with a sigh. She recalled Bill immediately and was prepared to go through the routine again.

“I am here to see my friend Harold. He came in through Emergency on Monday.”

“I know,” she said with a tired sound. It is the same sound that came with all of the disappointing statements she must give to visitors. “I’m sorry,” she continued. “Your friend is in intensive care. I can not give out information to anyone but immediate family.”

Bill started with his usual response, “But I might be…”

“I know, sir, and I am very sorry. It is the regulation and there is nothing else I can say,” the grey haired woman proclaimed with a heavy dose of sadness.

They stared at each other for a moment when Bill finally conceded. “I understand,” he said with a bit of a choked up sound. He could understand the rule, just not the dogmatic enforcement in this circumstance.

Bill started back down the hall toward the exit by the Emergency room. He passed pictures of important donors, including the Ringling Family of Circus fame. There were also paintings of peaceful ocean scenes that would seem to go with the best rooms at a Holiday Inn. Bill noticed none of it all week-long.  He just knew how long the walk would take to the exit.

As he got half way down the hall, Bill felt a tap on his shoulder.  “Excuse me,” a voice announced. “Excuse me, sir.”

Bill turned around to find the elderly receptionist right behind him.  She seemed a bit out of breath, probably from her pursuit of Bill.

“I am not supposed to say anything,” she said softly, as if she was telling a big secret, “but what are they going to do?  Fire me?  I am a volunteer.” At that, Bill saw her first smile of the week.

“Your friend is doing better,” she stated, “And they should move him out of Intensive Care soon, maybe tomorrow.”

Bill grabbed the old woman and gave her a big hug. Tears formed in his eyes as he told the receptionist, “Thank you so much!”  This was followed by another big hug.

So Bill thanked some woman he didn’t know for some news about a neighbor he hardly knew. The news itself really wasn’t anything at all, but it made Bill’s day complete.

LOOKING FOR A SILVER LINING

I woke up this morning to the sound of the phone ringing. It was the hospital. Just as well since I had to call them anyway.

“How are you?” asked the Lisa, the nurse for the unit.

“Swimming in a world of mucous,” I said. “But I don’t think it’s pneumonia. It doesn’t feel like pneumonia.”

“Are you coughing?”75-Sky-NK-84

“Not much, but I’m sneezing a lot.” I’m an epic sneezer. I put my heart and soul into my sneezes. They echo through the house. I’ve been known to sneeze 8 or 9 times in a row and throw my back out at the same time.

“That’s not good. After surgery, sneezing or coughing can be really painful.”

I could only imagine. The image it conjured was all too graphic. Ouch!

I called my friend to tell her surgery was postponed.

“Garry says he won’t drive me there. He says he has a bad feeling about this.”

“Me too,” she said. Me three, I thought.

Next call, the doctor. Chest x-rays all around. I don’t have pneumonia, but Garry does. I’m about 4 or 5 days behind him in this particular viral infection, but hopefully I won’t go the same route. I don’t believe in prophylactic antibiotics and neither does my doctor, but Garry is now on what have to be the most expensive antibiotics on the market. Usually, antibiotics are free or really cheap, but these were worth two weeks of groceries. Impressive. I hope they are as effective as they are costly.

Presumably Garry is now on the way to getting better. He’s not there yet, still pretty miserable.

Meanwhile, my surgery is postponed until I can breathe, no coughing or sneezing. The new date will depend on how long this cold takes to go away. If I’m lucky, a week. Unlucky, longer. At this point, I want to get this show on the road, get to the other side and start the healing process.

A thought for us all. With all the research and advances in medicine, there is still virtually nothing to be done about The Common Cold. I doubt they are any closer to a cure (or prevention) now than ever.

So where’s the silver lining?

I won’t be in the hospital for my birthday. Good. I’ve spent two birthdays in the hospital. Maybe this time, I will celebrate with Garry in our favorite Japanese restaurant. Overeating on sushi and other good stuff.

Even if we wind up eating breakfast sandwiches in front of the TV, it beats out hospital food with a side order of morphine drip.

Weekly Photo Challenge: Inside The Dana-Farber

Dana Farber lobby

There is no place quite as “inside” as inside a cancer hospital. Quiet, orderly, pastel. Everyone is subdued. Everyone waits. No one talks much. We’re all just waiting. If you are in the hospital, you or a loved one has cancer. Or you had cancer and are back to make sure you don’t have it again.

75-WaitingHPCR-7

This does not make for lively conversation. I always bring a camera with me so that while I wait, wait, and wait some more I can take pictures.

Daily Prompt: Take Care – Doing the best we can with what we’ve got

I’ve been sick a lot during the last dozen years. I’ve been in and out of the hospital too many times to count, been nearly dead, then miraculously better. I’ve had major body parts redesigned, removed and reconstructed. I have had to care for myself much of the time, even though I would often have much preferred assistance and support. Help hasn’t always available or what was available, wasn’t what I needed.

Some people aren’t good caretakers. Even with the best of intentions, not everyone has a knack for dealing with sickness or disability. For some of us, caretaking is as natural and automatic as breathing. If you are lucky enough to have one of these people in your life and he or she is able to help you when you need it, thank God for your good fortune. And don’t forget to thank the person who is helping you!  God may have put him or her in your life, but sincere gratitude and love directly from you to your caretaker should be effusive, copious, and frequent. Loud, too. Cards. Flowers. Whatever. Because many of us spend a lot of our lives helping others  … and you would be surprised at how rarely our efforts are rewarded with genuine appreciation. As often as not, the people who need us resent us even as we defer our own needs, put our careers and personal lives on hold so we can help someone who needs us.

Dana Farber lobby

Many people when confronted with a seriously ill friend or partner, are at a loss. Try not take it personally. It’s not personal. A husband faced with a wife who can’t perform basic self-care may closely resemble a deer caught in headlights. There’s more involved in that response than inexperience or ineptitude, though both play a role. There is fear, deep gut-wrenching terror. The person on whom you have always depended is suddenly looking to you for everything.  What if he/she dies? I’ve seen spouses effectively paralyzed, panicked by a diagnosis of cancer or something else life threatening. Most recover enough to be at least minimally helpful. Others remain dazed and pretty much useless.

We do the best we can. Life doesn’t offer unlimited choices. There’s no menu of options. If you have been hospitalized and will need help after release, you will probably be questioned by a hospital social worker or home care coördinator. They will ask you if you have support and assistance in your home. Since none of us wants to admit our family isn’t going to be able to care for us, we lie. Bad enough to need help, but having to admit it to a stranger?

A stiff upper lip won’t to get you through post operative recovery. You need someone to help you in and out of bed, change dressings, empty drains, help you take a shower, shop for you and prepare meals.

If you can’t stand up or walk. you aren’t going to be shopping and cooking. If you have no one who can take care of this stuff, you have to ask for help. Visiting nurses and other home care is usually available a few times a week, but if you live alone or with someone who is not likely to do what needs doing — for whatever reason — you might be better off in a rehab facility.

I find myself smiling ruefully as I read posts by people who obviously have been sicker than a case of the flu. They can’t imagine being too sick to get out of bed. Yet it happens. Eventually, it happens to everyone because we all get old, we all get sick — and ultimately, we die. Every last one of us.

There comes a time when we need help. Humility can be a good friend as you tread this unfamiliar road. Don’t worry about the imposition (although you will, of course). Eventually, you will find yourself giving to someone else what you received. It’s how we humans manage to survive the bad stuff that happens. We help each other. Which is what we are supposed to do.

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