WORLD-SHARING 2.02.4 – Marilyn Armstrong

Share Your World – July 9, 2018


What would you name the autobiography of your life?

Serendipity.


Which do you prefer sweet, salty or buttery?

All of the above, in varying combinations. I do not, however, like “sweet-salty” combinations such as chocolate covered salty pretzels. I do like sweet-bitter combinations like bitter orange, lemon … to a point. I’m not an extremist. I don’t like intensely bitter orange or super-soured lemon. I sort of appreciate subtlety in foods.

As for buttery? Not so much these days. When I was younger and didn’t mind fatty foods, I was more butter-inclined. Fonder of “slathered in butter.” Not much these days. I’m more temperate. I like a little bit of this, that, and the other thing. Too much of any single thing is … well … too much of a good thing.


What’s the finest education?

For what? Law? Medicine? Software Engineering? Physics? High Mathematics? History? Economics?

Even amongst the top schools for each subject, you could argue which was which THE school. Do you like MIT or Cal Tech? Harvard or Yale? Cambridge or the Sorbonne? Julliard? Oberlin?

Photo: B. Kraft

I think the best education for me or you would be the best we could get out of what happens to be available. I’ve met some really ignorant PhDers and some incredibly smart people without any formal education.

Still, that being said, a really excellent education at a top school for whatever you are studying can’t possibly hurt, right? So if you can get into the right school, definitely go. And I don’t mean online. I mean GO. Because there’s more to college than classes.


What made you smile this past week?

When we got home from the hospital — it was a long day — I found a package. It was the fancy Red Sox 2018 shirt I ordered for Garry. A bit more than I would normally spend on a shirt, but I thought he needed something to perk up his world. He has been so worried about this surgery, he needed an “upper” and I thought this would be it.

You think? It certainly made Garry smile  😎

COMPLICATION, COMPLEXITY AND NO ONE IS LISTENING – Marilyn Armstrong

What constitutes a complication?

When does the complexity exceed the nature of the problem to the point where someone would really rather die than have to deal with all that “stuff”?

For example — it’s dinnertime but the shrimp isn’t defrosted and you can’t cook the potatoes because you ran out of onions. Home fries without onions? Are you mad? Or, it’s Thanksgiving and the oven won’t turn on. How are you going to make that big bird? Turkey stew? Seriously?

But those things are simple when compared to medicine, doctors, hospitals, and tests.

The Front Door at UMass Memorial where they said I didn’t have an appointment

Life is a mess of complications and complexities and misunderstandings. I told you that, but you heard something else. You told me everything, but I forgot what you said — or even that you said it.

The older I get, the more simple I want life to be. I want appointments at a time when I can reasonably get to them, not at 7:30 in the morning following an hour and a half drive. There are some tests they insist on medically that are so complicated, I think I’d rather just die.

My favorite was the one where they wanted to examine my brain. It had taken weeks to even get the appointment. I got there, they’d lost the appointment. They made me a new one, but this one was so complicated, I was grateful when it came around and I had the flu and couldn’t go. Be there — in Worcester — at 6 in the morning. Get tested. Wait two hours for another part of the test. Wait until a doctor is available.

More of UMass Memorial

I said “Why can’t I just talk to a doctor and explain what happened? Maybe none of these tests are necessary?”

“The doctor insists,” she said.

Au contraire,” I murmured because I was the patient and I insisted I be allowed to talk to the doctor before testing starts. In the end, I didn’t take any tests. I was sure I didn’t need them. They were procedural rather than diagnostic. Expensive, time-consuming, unpleasant — and more than likely — useless.

Whatever is wrong with my brain, so shall it remain. I really would rather die. Sad, but true.

Too complicated. Call me crazy, but I think we should be able to talk to the doctor before they order a lot of complicated tests. Sometimes, you don’t need the tests. If no one talks to you, how do they know what you need?

The world is complicated, at least half the time because everyone is doing what someone else told them to do … and no one is listening to anyone at all.

No one is listening.
No one.

THE RIGHT PEDIGREE – Marilyn Armstrong

PEDIGREE – NOT JUST FOR DOGS!

When we talk about pedigree, it’s usually about dogs or horses … or even cows and goats. In this case, I want to spend time talking about doctors.

When it comes time to for surgery, you need the right doctor. Not just whatever or whoever happens to be the one your primary has in his circle, but one who has the kind of skills and background who will make you feel secure and safe — and most important, repaired.

The right medical insurance — a PPO which lets you go to any hospital and see any doctor.

When I went in with cancer in both breasts, I was already dubious about our local hospital in Milford. After a conversation with the surgeon, I knew that I would not use her under any circumstances. She told me that there was ONLY one way to deal with the surgery (wrong) and that it would be impossible to create implants. Wrong again.

With some help from a friend who was a doctor, I found the right hospital (Faulkner in Boston) and two doctors — the cancer specialist and a plastic surgeon — who told me full bilateral mastectomies were a better option than partials AND and they would give me implants so I would come out of surgery still looking like a woman. The two women worked together on me and when they were done, I had breasts.

Not “real ones.” No nipples. Lumpy, as post surgery implants tend to be, but I didn’t feel like an alien from another planet, either.

A few years later, it was my heart. My “local” cardio guy told me (on the phone — he never found the time to actually see me in person) — to not worry. When my heart began to fail, they’d deal with it. I didn’t like the doctor and how could he be diagnosing me when he never had time to see me? He sent me to his young practitioner who never really gave me the results of the tests (such as they were) and the doctor said he had no time to see me for at least six months.

Six months?

I went online and I found a brilliant heart surgeon at Beth Israel Deaconess in Boston. I went to him. He spent over an hour explaining options. That repair might be possible, but if it wasn’t, I had to be prepared for a full replacement. There were a lot more tests that needed to be run — none of which had been so much as suggested. We made a date.

The date got pushed back for months. Heart surgeons have a lot of emergencies. It comes with the territory … and then, I got pneumonia and had to wait until I could breathe again. It took probably 7 or 8 months to finally get me and the doctor in the same place (Beth Israel) at the same time. April 30, 2014.

I still had some serious tests to be done … almost a week of testing before surgery and when they did the surgery, it was much more complicated than it was supposed to be. It eventually involved two valves and a redesign of the left ventricle. Also an unexpected bypass including replacing of an artery (taken from my right leg). Finally, a permanent pacemaker since my heart has refused to restart without assistance.

If I had followed the instructions of the original heart surgeon, I would be long dead. Not merely was he wrong, but he was terribly, horribly wrong. I have had a hard time forgiving him for his callous disregard for me. He didn’t care and he made it obvious he didn’t care.

Mass Eye & Ear Hospital

Now, it’s Garry’s turn. He is up for a cochlear implant and the only hospital that does it in this area is UMass Memorial. Which, while I’m sure has perfectly fine surgeons, but it also has massive issues with communications and organization. Worse, it has a very limited facility for this work and limited ideas of how to do it.

Technology

Like many other surgeries, there are choices. One ear or both? Some do both, some only one and it depends on the patient. New techniques exist and these are only available at Mass Eye & Ear in Boston.

Cochlear Implant

Whether or not insurance will pay for new versions of the surgery is a different question, but at least there are choices. In the year since we started checking this out, Garry has spoken with the surgeons at UMass Memorial for a bare five minutes and he never got to ask a question.

We know nothing about them — not even their names. There are two of them, one as primary, the other his secondary. Garry is — understandably — nervous and worried about the process. Boston is a long drive from here. He will need to go for the surgery, then come and go from Uxbridge to Boston pretty regularly until they get the adjustments made and he can really hear as he should. Time is slipping away far too fast and we can’t keep just waiting.

The other day, Garry discovered he has a connection to Mass Eye and Ear and has been in touch with them. I think, despite the inconvenience, we will go with the place where they have the worldwide best reputation in the world for cochlear implants.

Although we are still in waiting mode, I hope we will have the chance for Garry to work with the doctors who have “best in show” pedigrees for his procedure. Because this is important and life changing.

Pedigree is important and not just for shaggy canine pals.

The right doctor is the difference between a successful procedure and something which never works quite right.

JUST BURY ME NOW

Oh Bury Me Now!


We were watching West Wing last night. Watching it again because I need a reminder that government doesn’t have to be as horrible as it currently is. I am pretending that the show — West Wing — is the real presidency and everything else is fake. I can’t do it all the time. Sometimes, news bursts into my bubble and I try to deal with it, but since I am at a total loss as to what is going on in my “real” world, I don’t get very far. Last night’s episode was the one in which the President and Josh get shot by one of our many crazy people with guns. Josh is much more seriously injured than the president and spends many hours in surgery.

After which, he spends many more hours unconscious.

The right way to be

Anyone who has been seriously ill following surgery and was unconscious for a long time — medically induced or otherwise — knows what I mean when I talk about waking up. There comes that point when they decide you’ve slept long enough and it’s time for you to awaken.  If you don’t know, it isn’t like you don’t hurt while you are unconscious. You hurt plenty, but it beats out how you are going to feel when you are actually awake and so-to-speak conscious. You lie there and you can hear the nurse or doctor … or your family and friends … asking, begging, pleading with you to wake up. I remember clearly saying “NO!” and drifting away. I’ve been sick enough for long enough to know — they are lying to me.

“It’s okay to wake up. We’ve don’t the surgery and you’re better.”

Liar, liar, pants on fire. You’ve done the surgery and when I wake up, it’s going to be pure, unmitigated hell. If I hurt now, in my semi or unconscious state, just think how terrible I will feel when I open my eyes and am forced to think.

“NO!” I said again, more forcefully this time. I knew I was not going to feel better awake. Absolutely no way was that going to be an improvement to the several days I’d passed in a stupor.

“Don’t you want to talk to your husband?”

“NO.”

“How about your friend.”

“NO!”

“Well, you don’t have a choice. It’s time to wake up.”

The expression “just bury me now” springs to mind. You know with 100% certainty that nothing they do will keep you from feeling the level of terrible you are going to feel. In fact, as they keep digging you out of your unconsciousness, you really feel how bad every piece of your body feels. It’s ugly.

I finally opened one eye. Then the other. “Where,” I asked, “Are my glasses?” Because I couldn’t see anything except a white blurriness. If I was going to be mortally ill, I wanted edges on my reality. I don’t know why, frankly. The edges didn’t make anything better. It turns out they woke me up shortly after surgery and I tried to throttle the nurse, so they put me back under for a couple of days. Apparently, I was seriously pissed off.

They didn’t bury me. I was awake again. And, ironically, it was the last sleep I was going to get in that hospital because from the first minute your eyes are open, they wake you up every 45 minutes for a pill, a shot, a blood draw, the change of transfusion bag. To add something painful to the stuff that already hurts, or jiggle the hurting stuff around so that everything feels worse.

Oh bury me now. Please.

They were explaining that they had to do one more surgery because my heart was refusing to beat. “Don’t worry Mrs. Armstrong. It’s a minor procedure.” Relative to what?

“Really? then let’s not do it.”

“We have to. Your heart won’t beat on its own and you can’t walk around …”

Walk around? I’m going to walk around?

“With a wired pacemaker on your chest.”

Why not? Is someone going to take my picture? Am I going to be the cover girl on “Repaired Hearts Monthly”?

But I woke up and they didn’t bury me. And remarkably, after a year or two, I started feeling better. But if you are in that bed and you are unconscious … and they are telling you the worst is over and it’s time to wake up? Don’t believe them. It’s a bald-faced lie.