Tag: medical

FANDANGO’S PROVOCATIVE QUESTION #27 – Marilyn Armstrong

Fandango’s Provocative Question #27

The question this week is exactly the kind of question I do not ever want to answer. It might be a question nobody wants to answer unless they are a medical researcher with skin in the game, so to speak.

“If you could choose one — and only one — particular malady, condition, or disease for which a safe and effective treatment was available, what one condition would you choose to treat and why is that your choice?”

As someone with more maladies than I care to list, some likely to kill me, others just likely to be a serious pain in my back, exactly how would I pick?

I have absolutely no idea what I should pick. Cancer? It has managed to kill about three-quarters of my closest family. Heart disease took the rest — and I’ve already had both, big time. Or maybe I should vote for arthritis? Unlikely to kill me, but very likely to make living increasingly unpleasant.

I’m pretty sure they are doing significant research on all of these diseases. Cure them? Who knows? But they have come a very long way in treating both cancer and heart disease. Arthritis lags behind, likely for a couple of obvious reasons the first being that almost everyone gets it.

It probably is not preventable unless old age is preventable. Also, it isn’t lethal, which means it doesn’t generate the money for “cures” that more fatal diseases garner.

I’ve got it! Let’s cure aging!

I don’t mind going gray or wrinkly. But let’s dump arthritis, exhaustion, bad hips, worn-out knees, loss of memory, and insomnia. While we are at it, cure dementia and Alzheimer’s. Add a little zip to our steps so we can be old, wise, and energetic. So we can still be who we have always been — right up until that last breath.

Photo: Garry Armstrong

And please, while you are at this curing business, make sure everyone has full access to medical care, no matter what is wrong with them.

AND STILL ALIVE – Marilyn Armstrong

In 2010, I discovered I had cancer in both breasts. Two tumors, unrelated to each other. Just twice lucky. They removed the tumors and the associated breasts and gave me very attractive fake replacements. Much perkier than the old ones in an artificial implant sort of way. I have a little ID card for both breasts as if they each have their own identity.

Maybe they do. Thus, a little more than 8-1/2-years after the siege began, I’m officially a survivor. Almost but not quite.

My mother died of metastasized breast cancer. My brother died of pancreatic cancer more than 10 years ago, having never gotten as old as I now am. This is not a reassuring family history.

All chronic illnesses make you paranoid. The thing that’s so insidious about cancer is its absence of symptoms. The possibility that it is growing somewhere in your body and you won’t know it’s there until it’s too late, is about as scary as a disease gets. Nor is it a baseless fear.

I had no idea I had cancer — much less in both breasts — until it was diagnosed twice during a two-week period. One diagnosis of cancer is hard to handle. A second diagnosis a week later is like getting whacked over the head with a bat. It leaves you stunned, scrambling to find someplace to stand where the earth isn’t falling out from under you.

I don’t think most of us are afraid of dying per se. We are afraid of the journey we will have taken to get there. We’re afraid of pain, suffering, the humiliation of dependence and gradual loss of control of our own bodies. After having one or more close encounters with the dark angel, no one is eager to feel the brush of those wings again.

We are called survivors, which means that we aren’t dead yet. The term is meaningless.

Put into perspective, we are all survivors. Anyone could be felled by a heart attack or run over by a beer truck today, tomorrow, in five minutes. The end of the road is identical for all living creatures. It’s only a matter of when it will be and what cause will be assigned. Everyone is in the same boat.

If you’ve been very sick, you are more aware of your mortality than those who’ve been blessed with uneventful health, but no one gets a free pass. The odds of death are 100% for everyone.

Recovering from serious illness is a bumpy road. Each of us has a particular “thing” we find especially bothersome. For me, it’s dealing with well-wishers who ask “How are you?”

If they wanted an answer, it might not be so aggravating, but they don’t want to hear about my health or my feelings about my health — which are often more the issue than anything physical.

They are being polite. So, I give them what they want. I smile brightly and say “Just fine thank you.”

I have no idea how I am. All I know — all I can possibly know — is that for the time being, I am here. To the best of my knowledge, nothing is growing anywhere it’s not supposed to be.  Eight-and-a-half years after a double mastectomy, I am in remission. That’s as good as it gets.

The real answer for those of us who have had cancer, heart attacks, and other potentially lethal and chronic ailments is “So far, so good.”

That is not what anyone wants to hear.

We are supposed to be positive. Upbeat. You are not supposed to suffer from emotional discomfort. Why not?

Because if you aren’t fine, maybe they aren’t, either. They have a bizarre and annoying need for you to be bright-eyed and bushy-tailed no matter how you actually feel. It’s their version of a vaccine. If you are fine, maybe so are they.

Since cancer, I’ve gone through major heart surgery and having survived that, I figure I’m good to go for a while. None of us are forever, but I’m alive. Presumably, I’ll continue to stay that way.

Welcome to surviving. It’s imperfect, but it beats the hell out of the alternative.

A CALL FROM THE HEART GUY – Marilyn Armstrong

I hadn’t heard from the heart doctor. Having not heard anything, I eventually concluded that there must be nothing important to talk about because if there were, someone would have mentioned it.

This evening, the doctor called.

So it turns out — by the doctor’s reckoning — there’s not much to discuss.  From my point of view, a bit more to talk about.

My heart is as good as one can expect it to be — given how much surgery has been done and its condition to begin with. Hypertrophic Cardiomyopathy is a big deal and I had it for a long time before I knew about it.  I’ve had two replaced valves — aortic and mitral, as well as a replaced artery and an implanted pacemaker that will — in maybe four or five years — need a new battery. Assuming I’m still kicking around in four or five years.

How is my heart doing? As well as can be expected, thank you very much. The atriums are oversized, the ventricles are over-muscled, but all things considered, the heart is pumping reasonably well.

“So I’ve got another year you figure?”

“Probably.”

“That’s good. I don’t have to start packing yet.”

Of course, I don’t have the results of yesterday’s test yet, so who knows?

SLEEPLESS ELECTROENCEPHALOGRAM TOMORROW! THE FUN NEVER STOPS! – Marilyn Armstrong

I’ve got a “sleepless” EEG (electroencephalogram) tomorrow morning. It means I can’t go to sleep until midnight and I have to be up by four in the morning and be at the hospital by eight in the morning. No caffeine, but I can have breakfast.

I don’t know how to have breakfast without coffee. What am I supposed to eat? Without coffee, am I supposed to cook? Like … food?

I suppose it will be something to do while I have to wait to leave for the hospital. Do I need to tell you how much I’m not looking forward to this?

So please do not be surprised if I don’t make comments in the morning or write much. I am likely to go back to bed. Quite probably Garry and I will both go back to bed. Except I will have to take a shower and wash my hair first because they use a kind of glop to attach the electrodes to my head and I have to wash it out or it will turn to cement and I might never get it out of my hair.

Meanwhile, no one has called to give me information about last week’s echocardiogram. I called the office and she pointed out if there was anything wrong, they would have called me. So I can assume if there is anything amiss, I’d already know it.

I guess I’ll stop worrying.

Now all I have to do is worry about surviving without coffee and getting the goop out of my hair.

It’s going to be a really terrific day. And a great night, too. I can hardly wait. The high point of this day was that the hospital called me — a human BEING called me — to remind me about the test. A real live person called and asked me if I was going to be there. I said yes and she said “Great!” We both hung up.

Wow. A living person called me. How often does THAT happen?

PLEASE, JUST MAKE ME FEEL BETTER – Marilyn Armstrong

FOWC with Fandango — Health

I visited my favorite doctor last week. She is the only one of my original set of doctors I kept when I changed insurers. Despite her not being covered directly by my new insurance, she “gets me” in a way that only someone who has known you for a long time possibly can.

I hadn’t seen her in while — she was on vacation — so we had some catching up to do. We talked about me, her, life, getting older, and how things don’t feel like they did when we were young. Mostly, we discussed how important it is to feel better.

Anyone who has been sick for a long time knows what I mean when I say:

“I just want to feel better.”

There comes a moment in time when whatever is wrong with you has dragged on for what feels like an eternity. You can’t remember what it was like to feel good. You’ve done everything you are supposed to do yet still, you feel like crap.

Whether it’s cancer, recovering from surgery, anxiety, bipolarity, the pain of chronic illness — or any combination of the above plus all the other things I forgot to mention — there comes a day when all you want is to feel better.

You really don’t care how. Whatever it takes, whatever drugs, surgery, therapy, whatever. Please, make me feel better. I want a day without pain. Without anxiety, depression, or nausea. I want to feel normal, whatever normal is. Because I am not sure I remember “normal” anymore.

The problem is that feeling better isn’t considered a medical issue. As far as doctors are concerned, feeling better is your problem, not theirs. You can’t test for feeling better. You can’t plot it on a chart.

There is no medical value to how you feel. If you can’t put it on a chart or turn it into a statistic, it’s not real and not important.

To me, it’s the only important thing. Since feeling lousy isn’t an illness, feeling better isn’t a cure. If it isn’t a cure, the medical community isn’t all that interested.

Meanwhile, the doctor keeps telling you you’re fine. Except you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Depressed. Fed up with everything.

Just three of my doctors believe feeling good is a legitimate medical goal. One is my primary care doctor, the next is my cardiologist and the final one is my shrink.

Her task is to help me feel better. “After all you’ve gone through,” she says, “that’s what I can do for you. I can help you feel more like you used to feel before all that horrible stuff happened.”

She understands. She gets it. I’m going to keep her. The hell with insurance.

NO ONE IS LISTENING – Marilyn Armstrong

When does the complexity of a problem exceed the original problem to such a degree that one would really rather run screaming into the snow than have to deal with all that “stuff”?

Let’s say it’s dinnertime. The shrimp isn’t defrosted and you can’t cook the potatoes because you are 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, but you heard something else. You told me everything, but I forgot what you said or I was too drugged to understand assuming I was awake but I’m sure I wasn’t.

So … whatever you said? I have no idea what it was and please don’t repeat it. I can’t hear you.

The older I get, the more simple I want my life to be. I want appointments at a time when I can get there comfortably. Nothing at 7:00 am in the morning after an hour and a half of bumper-to-bumper traffic.

There are tests they assure me I need — medically — that are so absurdly complicated, I think I’d prefer to die.

My favorite is the one where they want to examine my brain. It had taken weeks to even get the appointment. When I got there, they’d lost the appointment. It turns out they were looking in the wrong book because they really did have it — in the right book. Which they didn’t have at the lab.

They made me a new appointment, but this time, the test was ridiculous so I was glad when it rolled around, I was sick and couldn’t go. They wanted me to be in Worcester at 6 am. Get tested. Wait for two-hours for the second part of the test. Then wait several more hours until a doctor is available and he, without interpreting the test, tells me to go home. I’ll get a skeleton version of the results probably a week later. I will be told the result is “negative.”

What does negative mean? Is that good? Bad? Do I get to actually finally talk to a doctor? Or is “negative” the whole story. Since they aren’t going to tell me what they are testing for, what are they telling me?

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 am the patient and I insist I be allowed to talk to the doctor before testing starts. This is expensive testing because our government keeps raising the prices for tests and we are poor. So, unless someone is willing to explain what they want to test for, I’m not going.

In the end, I didn’t take any tests. My cardiologist thinks I might need them, but he wants to do some heart testing first. But he does think, as I do, that whatever is wrong is probably not fatal and not in need of expensive testing. More like a diagnostic visit.

The world is complicated. At least half the time, it’s complicated because everyone is doing what someone else told them to do. Or they think they are doing what someone told them to do, but they aren’t. Because no one is listening to anyone.

No one is listening. No one.

INTREPID BY ROAD – Marilyn Armstrong

FOWC with Fandango — Intrepid

Intrepid will always be the name of one of Horatio Hornblower’s ships. Somewhere in my 20s, I discovered Horatio Hornblower … and that’s how I learned that there was an actual use for trigonometry! If only they had mentioned this in school, I might have had a clue what I was doing instead of random calculations used to reach an answer that meant absolutely NOTHING to me.

We probably should have named The Duke “Intrepid.” He is quite the intrepid voyager. Except he likes when we come out and let him IN the yard, even though he jumped out. I guess out is easier?

Today I am off to see the wizard, also known as my cardiologist. He’s a new one. I’m trying to finally shake off Boston and get all my physicians lined up locally. Boston made the news the other night as officially (who is the official calculator of such things?) having the worst traffic of any city in the U.S. Not in the world. I think there are quite a few cities in Europe (and how about the traffic in London!) that could compete.

Boston has gotten terrible. When I moved here in 1988, traffic wasn’t great, but you could get from one place to another and generally even park when you got there. Not any more. Not only can it be impossible to get there, but if you do parking will cost the price of feeding two people for a week. Or more.

Bad. Very, very bad.

We spent something like 50 billion dollars to remodel our road and I swear they are worse than they were before we spend more than a decade redoing everything. The thing is, they move things around, but they didn’t make them bigger. Just stuck them underground (cough, cough, cough) or straightened out the crooked pieces.  So we’ve got nice straight bumper-to-bumper traffic.

Boston traffic is only for the intrepid.

We’re away shortly. As we head for UMass, a mere 20 miles away, call us intrepid. Also, please hope they don’t find anything new or interesting.