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.

KILLING PAIN – OUR LUDICROUS LAWS STRIKE AGAIN – Marilyn Armstrong

FOWC with Fandango — Ludicrous

It’s ludicrous. I do not get up at 6 in the morning. But we did today. Why? Because the medication I need is only made by a single manufacturer and none of our local pharmacies have any left. There is a full dose at the pharmacy at UMass, so first we have to go to the doctor to pick up the prescription, then dash off to UMass to get the pills — and hope they saved them as requested AND hope traffic isn’t too horrible.

NSAIDs

Demerol is an old medication, around for at least 40 years, maybe longer. It’s milder than most of what they make today and more importantly, it doesn’t make me sick, which most narcotics do.

So we’re on the run. Again.

Tomorrow we’re heading down to Tom and Ellin’s and I hope the weather is decent! It’s going to be another nutsy week for the retired people.

The problem with NSAIDs

I was pretty sure when this country decided to get rid of opioids, they were going to forget that there are people who actually need them because they can’t take anything else. I can’t take any NSAIDS (Nonsteroidal anti-inflammatory drugs) including ibuprofen in all its many forms, aspirin (in its many forms), Celebrex, Vioxx … or any combination of these packaged in combination a different drug. I can take Tylenol (generic or not), but only 6 per day lest I overload my kidneys. That doesn’t leave me much wiggle room for a lot of pain from this, that, or the other thing.

They have actually improved the glue so they stay on!

I have invested in a lot of 4% lidocaine patches and liquids and surprisingly, it helps. It’s not addictive, either. The prescription strength is 5% and is so insanely expensive, it’s out of my range. I bought it once. It was for me out-of-pocket $488.

If the 4% patches are $20 for 15, how can 30 — on a script — run nearly $500? That doesn’t make any sense. If you want to stop excessive opioid use, how about making other stuff priced so regular people can afford it?

On social security, you only get a certain amount you can spend on drugs. I’m lucky that I’m on a Blue Cross plan that requires no payment for blood pressure medication, which is the vast majority of what I need to survive. But everything else is on my dime and it’s a very little skinny dime. The Demerol —  being a generic — is not expensive. It’s also not available most times and getting less so every day. I can easily foresee a day in the not very distant future when no one will make it and I’ll either have to switch to something stronger and more addictive — or suffer. I’m not very enthusiastic about either possibility.

America is an overkill kind of country. We either give out opioids to everyone by the handful, or we decide no one needs them.

And this works too, but the patches last longer. On the other hand, you can use this in places the patches don’t fit.

People like me get slammed between the pages of their current standards. Which I’m sure will be changed soon enough because there are a lot of people in pain that need help. Pain is actually the second largest subject with which medicine deals. Chronic from a wide variety of causes including men back from battle, people who have fallen off ladders, police officers … and people like me who can’t take what everyone else takes.

It is ironic because regular over-the-counter Excedrin (or equivalent) works better than Demerol. So do most muscle relaxants — but I can only take them a few times a week because I have a long history of ulcers.

The frustration is crazy. I can’t take a lot of things because of the replaced heart valves and the pacemaker, other things because of the ulcers, and many more things because of allergies or sensitivities.

I know I’m hardly alone in this. And I’m sure it will get worked out, but whether it will get worked out fast enough for me is another big question.

And yet I’m not terribly worried because in the end, if this becomes unavailable, we’ll find something else. I just wish it wouldn’t be so damned complicated. Or expensive!

SEEING DOUBLE – Marilyn Armstrong

FOWC with Fandango — Double

Among the final tests they did on me — after the fancy arterial testing, mental testing and a lot of stuff I barely remember, they ran an eye test. You know: holding up the card and asking you to read the letters? It turned out I saw it twice with my left eye, but only once with my right one.

“AHA,” they cried. “By George, I think we’ve got it!”

They peered into my eyes, but couldn’t see anything in the left one. It was murky.

“CATARACTS!” they exclaimed, looking and sounding relieved. By then, we were ALL relieved. The seizures weren’t seizures — they were narcolepsy which is in my records, but no one ever looks at your records. They do everything except check to see if you have by some odd chance another condition which could account for the current problem. Why do they bother to keep records since no one reads them anyway?

Remarkably, it is exactly like the folks in customer service who never look to see if someone left notes in your records. It’s probably part of the onrushing of stupid that makes the world such a dandy place for all of us.

Suddenly, all was (sorry for the pun) made clear. Double and/or fuzzy, depending on which way you looked at it, or more to the point, depending on which angle I am looking at it.

I only have double vision peripherally and only on the left. Looking straight ahead, it’s a single image but fuzzy. The left side of my right eye is also murky. Who said everything has to grow evenly?

Just for a statistical explanation for you number-minded folks, at age 75, you either have cataracts or have had cataract surgery. They expect to do more than 30 million such surgeries this coming year — worldwide (only about 3 million in the U.S.). There might be more because cataracts are inevitable. There would be even more except for poor countries which don’t have the facilities or doctors to perform the surgery.

Someone at some institute is working on eye-drops that will make cataracts disappear, but it hasn’t happened yet. This would be great because it might be a way for all the people worldwide who don’t have facilities for eye surgery to have their cataracts corrected. But drops would mean you won’t get those corrective lenses that give you perfect vision (for a few years, anyway). You probably haven’t seen that well since you were a toddler. I really want that perfect vision.

Warning: You will absolutely need reading glasses! But the good news? You can get the cheap ones from Target or Walmart.

What a great idea, to be able to open my eyes in the morning and see clearly! Without fumbling for my glasses. Totally cool!

So. This old lady has cataracts. How utterly normal.


Note for photographers of a certain age

If you are a photographer, one of the signs of cataracts is that the colors in your pictures seem dull. If you find you have to keep turning up the saturation and sharpness, you might have cataracts. You don’t need to be old, either. They can occur at any age, though more likely when you’ve passed 60.

AND AFTER ALL THE TESTS … Marilyn Armstrong

After Garry and I left our car with the valet at UMass Memorial, I looked at Garry and commented: “I should have just gone to an eye doctor.”

Considering all the testing and checkups, you’d think I’d have a diagnosis. Nope. I know just what I knew when this round of medical visits began. This was one of the times when two things happened at the same time. I wrongly assumed the two events were connected.

Back again

It’s a natural reaction. I had my little seizure, or what seemed like one and my vision went all funky at the same time. One plus one is expected to equal two, except when it remains one and one and they don’t add up.

Seizures? Not exactly.

I have narcolepsy. It’s one of the many reasons I don’t want to drive. One time, a few years ago I fell asleep while driving. The next thing I knew, I had an incident with a tree. I don’t know how far I drove (asleep) before I hit the oak. I also knocked off my rearview mirror somewhere en route to the big tree and no one ever found it.

It’s possible I drove for a mile or two (there was no traffic) before I drifted to the side of the road and conjoined with nature.

It turns out that narcolepsy can produce those weird sort of seizures I had and one of the ways you can tell it was not a real seizure is that it leaves nothing behind. You aren’t groggy or muddle-brained. It’s literally as if nothing happened. I remember once in the middle of a home barbecue, I collapsed in the hallway. On further checking, I had fallen asleep and just fell in a heap on the stairwell. Everyone thought it was funny. I didn’t think it was all that funny, but I didn’t know I had narcolepsy.

It can be a difficult problem to diagnose. My shrink finally nailed it.

Ever since I hit that tree, I’ve been wary of driving. It’s why I always have a stash of amphetamines with me. It’s no big deal if I fall asleep at home — as long as I don’t hit my head or face on something on my way down. Which I have also done. In that case, I was walking, said I felt funny, but apparently kept walking (but not awake) into a door frame. That time I also woke up screaming but with good reason. I split my face open. It required some interesting stitching of nose and lips … and a missed interview for a job I wanted.

I also was a serious sleepwalker for many years. I don’t think I still sleepwalk because it’s too hard to get out of bed … but when things go really missing and I eventually find them in some strange place, I suspect I did it while asleep. My granddaughter also sleepwalks. Is it genetic?

It never crossed my mind that all of these events were part of the things narcolepsy does, but that’s what they’re telling me.

The narcolepsy is not new. I have spent many hours sleeping in my car by the side of the road because I knew I was going under, only to be woken up by the cops telling me it’s illegal to sleep by the side of the road.

I would point out that this is exactly what they tell you to do if you feel you cannot continue to drive. It’s in all the books on safe driving. Nonetheless, they immediately tell me I have to move along. Have they missed the part where I say I was too tired to keep driving and had to stop or I was going to have an accident?

Stupid is as stupid does.

So that’s the story of the seizures. They aren’t seizures. They are my narcolepsy acting up, usually on a day when I not taken amphetamines. They don’t make the problem go away, but for at least four or five hours, they keep me reasonably alert.

Finally, the strangest part of narcolepsy is that you may have symptoms of its approach (intense sleepiness), or you may be hit by waves of dizziness. Or a sudden upset stomach. Or you are fine and fall over. Asleep.

It’s not a disease, though it is a condition and while the amphetamines help for short periods when I absolutely must be awake, it doesn’t cure anything.

Nothing cures it probably because they aren’t entirely sure what causes it. They have theories, most of which seem to involve sleep apnea except I don’t have sleep apnea. I do have exactly the right kind of insomnia, though. The kind where I fall asleep directly into a dream, then wake up every two hours until finally, a nightmare makes me decide sleeping isn’t a good idea and anyway, the dogs are barking.

What about my eyes?

It’s probably (drumroll) … cataracts. My right eye is relatively clear, but my left eye is cloudy.

I’m 72. Garry was treated for cataracts when he was barely 60 and my father had cataracts years before me. Actually, everyone gets cataracts sooner or later. Dogs, cats, and horses, too. I’m just a bit late, but by age 75, everyone either has cataracts or has had the surgery. It is THE most widely performed surgery in the world. They expect to perform around 30 million cataract surgeries next year. That’s a lot of surgeries.

You get old? You get cataracts. You can also get cataracts without getting old. Some babies are born with them.

There are no eyedrops of any other form of correction for cataracts other than surgery. You get them repaired or you don’t. If you don’t, eventually you can’t see.

So my next doctor is the ophthalmologist. It would appear that I may not need new glasses. I may need new eyes. Which sounds like a good idea. Garry and Tom both have had the surgery and they LOVE their new eyes. Finally — NO glasses.

Wrapping Up: Coincidence is not a sign from the Universe

Just because two things happen at the same time doesn’t mean they have anything to do with each other. We all read too many mystery novels where everything is a clue. This is particularly important when you are dealing with physical symptoms. Simultaneous doesn’t mean causative.

And this is also what’s wrong with having so many specialists who only look at your wrists or fingers or hips, but not your spine, brain, or eyes. I think most of us need someone who will look at all the stuff going on who can then tweeze the pieces apart and figure out what is really wrong.

Dr. House, come back! I need you!

FACTORING IN THE TEST RESULTS – Marilyn Armstrong

FOWC with Fandango — Factor

So my test results came back. After I did a full translation of virtually every word in the report — I’m pretty good with medicalese, but this was way above my pay grade — I discovered that considering my age and stage of life, I’ve got functional, but not perfect arteries. If you want to factor in all the tests that were run initially during my first visit to the neurologist — and then this new set of tests — we know that I’m getting on in years.

Which is exactly what we knew before. We do not know if what the tests found to have anything to do with the visual symptoms. They could be connected, but they could also be entirely separate with no connecting thread. And worse, there’s actually no clear way to address the matter. It’s not like there’s a book which gives answers because what’s bothering me aren’t the symptoms for any known disease or condition or illness.

Thus I know what I knew when I started this process. I was afraid this would be the result and why I didn’t want to begin the process. It’s “non-result.”

A lot of information has been collected,  but are any of these results related to the symptoms? I’m not even sure why I started this process in the first place except that I felt I had some kind of obligation to find out if it meant something — or not.

“Or not,” seems to be the answer.

I’m just as worried (but more confused) than I was at the start. I’m overloaded with information that doesn’t mean anything to me. I suppose — or at least I hope — that this will make more sense after I see the doctor next week.

With all the advances we’ve made in medicine, in the end, a lot of it is more like art than science. Maybe someday it’ll be just like “Bones” on the Enterprise. Just use that little tricorder and poof! Diagnosis, cure, and life renewed.

I’m waiting. Aren’t we all?

TOO BUSY AND NOT PARTICULARLY DISINGENUOUS – Marilyn Armstrong

FOWC with Fandango — Disingenuous

I am not (mostly) disingenuous. I certainly lack false modesty. Okay, that’s not true either. I’m really terrible at taking compliments, especially when I am not sure I deserve them — but I really improve if I think I’ve earned it.

So, while I am not 100% honest, who is? If you count the fake excuses we make for places we don’t want to go — and little white lies about the dent in the hood of the car — we are all a little bit politely dishonest. We don’t lie about important stuff, though. The fact that I blog probably eliminates “disingenuous” from my resume.

I figure I’m honest enough, especially these days when I’m not even sure what honest is supposed to mean.  Are we all equally confused or is it just me?

Today, it’s off to the hospital to get tested for something that has been lingering with me since I was in my early thirties and for which I have been tested — repeatedly — both here and in Israel. Lots of guesses, all of them wrong. So now they are checking to see if I perhaps have had minor strokes without knowing it.

Tests and followup appointments for the next two weeks will keep me ridiculously busy. I don’t know how this can be, but I swear my life seems three times busier than it felt last year.

I used to have plenty of time to blog, write stories, take pictures and all that and still have time to read other people’s posts and comment. Now I swear by the time I am halfway through my first cup of coffee, I’m already late for something.

Today I am having a Carotid Duplex Scan, which is some kind of intriguing CATscan of my throat and arteries to determine if I have had one or more minor strokes with no after effects. After which, there will be an appointment with the specialist to sort through the half dozen tests I’ve already done. And the bills. Sigh.

This will not even close to the first test for this problem, here or in Israel. They have more advanced testing now than the last time (about 18 years ago) I was tested. It will be interesting to see if they find out something. So far, this has been a lot of running around without anything to show for it. I didn’t want to do this because each time, the result is “idiopathic” — which is to say, medically clueless.

It could be anything or nothing.

This “small seizure” thing has been popping up intermittently for 40 years. It’s scary (especially to those who are around when it occurs), but it never seems to do any harm. Five minutes later, I’m fine and it feels like nothing happened. It may not occur again for years.

As we get older, though, it becomes more of an issue to determine what is happening. So we endure all the tests. So far, we know what isn’t wrong.

I’m betting I’m going through this entire testing and doctoring thing — and will know nothing more when I’m done than when I started.

Also under exploration is my spine. That’s of more concern. I’m hoping — seven years after being told there was nothing anyone could do — that maybe medicine has advanced and there’s something.

Not a cure it because it isn’t curable, but at least something that might make it feel better. Even a little better.

I’m off to the hospital. This time, I get to go to the big shiny building on the campus! Are we having fun yet?