WHEN BONES DON’T KNIT – Marilyn Armstrong

Yesterday morning, I dropped the mouse for the computer in the bedroom. I reached down to pick it up and a pain shot through my chest, down my arm and I yelped.

I had a lot of heart surgery more than five years ago. Most of it has healed well. The thing that hasn’t healed properly is my breastbone. Surgeons split it in half when they work on your heart. Normally, it will take between 2 and 6 months to knit into a single unit. Mine didn’t knit, so it’s still a two-piece breastbone. Healed, but not knitted and held together with steel wire. Apparently, no medical technology exists that can convince a bone to knit if it doesn’t want to.

Typically, this is a problem on joints that cannot be immobilized — ribs, breastbone, shoulders, spine. And, I should mention that when one of these is broken, you discover that every single other thing in your body is connected to it. So it has been for the past two days. Moving really hurts. But only at certain angles while using my right arm.

I’m a rightie. Of course.

It seems a little better today than yesterday, but it’s still crunching with each breath I take. I can hear it through my inner ear. Creepy.

Every doctor I talked to assured me — energetically — that it would heal in three months. When after three months, it hadn’t healed, they said “Definitely by six months.”

When more than a year had passed, they shrugged, pointed out that there’s nothing they know of that will make a bone knit if it doesn’t feel like knitting. Nope. No glue. The only thing they could do is open me up and rewire me. “Why, ” I asked, “Would that improve the quality of my life?”

My doctor — my personal physician — shrugged. “It wouldn’t. Personally, I wouldn’t do it.”

It’s more than five years later, heading rapidly into six years. My chest still crunches when I breathe and sometimes pops out of place when I lift something with my right arm. It sometimes makes breathing pretty unpleasant and my right shoulder doesn’t like me anymore.

Meanwhile, I’m held together by some pretty tough steel wire. Doctors always seem so sure what will happen after the surgery. Except in my experience and for a lot of other people, it doesn’t necessarily go that way. Nerves don’t “calm down.” Bones don’t knit. You are left with a lot of weird problems you were sure were going to be gone. If at least the major part of the surgery worked, then I suppose it’s better than where you were at the start. I always want to trust my doctors because they mean well, but they aren’t me. So these days, I understand just because they believed it when they said it doesn’t mean it will happen that way.

ONCE IN A LIFETIME – Marilyn Armstrong

I don’t envy much. I’ve never needed the biggest house or the fastest car. Fashion doesn’t tempt me and success for me has always meant having enough. Spare would be nice, but enough will do. I don’t need popularity. A few good friends and some companionable other acquaintances are just fine.

Photo: Garry Armstrong

But you, over there? Yes, you. Young person, with your flexible body and the spring in your step. I bet you can sleep a whole night without having to take “something for the pain.” I bet you still have all your original parts too. No silicone implants or valves from other creatures. That must be really great. A spine that isn’t encrusted by calcification. A digestive system that will handle whatever you throw into it … and at your age, probably that’s all sorts of weird stuff. I hope you get over that. Stomachs are important. They don’t stay tolerant forever.

And feet! Oh, how glorious! You can run, jump, walk. Your eyes are clear and bright and you can focus your camera without special glasses. How delightful. I remember when I could do that.

It’s not envy. That would imply you’ve got something I want to take from you. It’s just that you are young and healthy. Your beauty is in your vitality and the joy I see you take in the simple acts of daily life. It’s not envy. It’s more wanting to turn back my own clock. Oh, what I’d give for a single day of being completely healthy and pain-free.

On the horse

I hope you treasure what you have. I didn’t realize how much it would change and how quickly it would happen. I never expected to be what I am now. In my imagined future, I was just as you are now, but with a little gray in my hair. Otherwise, I’d be perhaps a bit slower. I want a day as I was so I can treasure it and remember how it feels to walk with a spring in my step, eat an ice-cream, run across the grass, ride a horse.

Treasure what you have, youngsters. It’s worth more than gold. If it goes away, no earthly treasure can buy it back. Take care of yourself. Hoard your riches. You’ll need them on the road ahead.

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.

I AM THE APPLE – Marilyn Armstrong

It occurred to me I needed to see my spine specialist. When you deal with chronic pain, you learn to ignore it most of the time. Unless you want to wind up addicted to pain killers, it’s your only option. It’s a practical decision. Do I want to keep participating in life? Then I have to deal with what I have to deal with. That’s the way it goes.

Mom-May1944

Long-time ago, I was doing my mother’s hair. I liked fixing her hair. Hers was easy to style. Thick, silver and just a bit wavy. I asked her to turn her head to the right, and she did. When I asked her to turn her head the other way, she said: “I can’t.”

“You can’t? Why not?”

“Because my head won’t turn that way.”

“What do you mean by that?”

“My neck is stiff.”

“Um, mom? How long has it been like this?”

She thought for a while. “Fifteen years? Something like that.”

That stopped me. Fifteen years? “Have you seen anyone about it?”

“No,” she said. “I figured I was just getting old.”

At the time, I thought her statement was bizarre. It turned out she had treatable but advanced tendonitis and it got better. She hated doctors and hospitals.

Time marched on. I’m much older now than my mother was then. I fully understand her response. When I called the doctor for an appointment, I discovered the last time I’d seen him was more than six years ago.

To be fair, I’ve had a few medical crises since then and I got distracted. Besides, I know what’s wrong with my back. It isn’t going to kill me. I’ve lived with it most of my life. I’m used to it and do my best to ignore it.

Right to left: Aunt Pearl, my Mother (Dorothy), Aunt Ehtel (Uncle Herman’s wife), and Aunt Kate.

Recently, though I’m having trouble walking, even on flat surfaces and going up and downstairs is especially difficult. It crossed my mind there might be something he could do — some medical magic — to improve me without major surgery. I already know surgery isn’t an option.

My doctor is wonderful. The best. The only doctor who can look at my spine, not gasp with horror and immediately decide I need to be rebuilt with screws, pins, and bolts. He’s a minimalist, medically speaking. I appreciate that.

I made an appointment and got lucky because there was a cancellation. It usually takes five or six months to get to see him, but I only had to wait a few weeks. He’s the king of spines in Boston, maybe in the country. I would have willingly waited six months if I had to. Of course, as soon as I made the appointment, I had to make another appointment because I need new films for my spine. I also haven’t had a CT scan (I can’t have an MRI because of the magnetic pacemaker in my chest) in six years and he isn’t can’t see much without fresh films.

I wondered how come I hadn’t processed the fact I can’t walk normally? I suppose I wasn’t paying attention. I was busy ignoring pain.

I was being my mother.

She taught me to be a soldier. She didn’t use Novocaine when she got her teeth worked on. I asked her why. She said, “Pain is good for your character.”

Tree Silhouette in B & W

She meant it. I grew up believing that giving in to pain was a weakness. To a degree, it serves me well, but sometimes it can be dangerous. If you ignore the wrong stuff, it can kill you. One needs to find balance, but that’s not easy.

Watching a documentary on Ethel Kennedy reminded me of my mother, except without the millions of dollars.

Mom was an athlete and I know she was baffled at how she wound up with such a klutzy daughter. She played tennis. She rode horses, played ice hockey. She went bob sledding. She painted, sculpted, designed and made her own clothing. She also never got past seventh grade, so she made up for it by reading everything. She had a truly voracious appetite for life and knowledge.

After a radical mastectomy, she couldn’t play tennis anymore, so she played a ferocious game of ping-pong. She played savagely. She served so hard it was more like a bullet than a ping-pong ball.

As a family, we vacationed in dinky little resorts in the Catskills where there was no entertainment. The one thing they always had was a ping-pong table. So I played against my mother.

She didn’t believe in any of that “let the kid win” stuff. She was a competitor. You won or lost. Trying hard was irrelevant because she expected nothing less. She slaughtered me.

As I got older, I played better but she still always beat me. She told me she was giving me an advantage by playing with her left hand. I knew she wrote with her right hand, so I assumed she was a rightie. Until the day my aunt told me she had always played tennis with her left hand. My mother was psyching me out. Her own daughter.

I never beat her, but I beat everyone else.

She passed me her determination to never give up, to do everything I could as well as I could. Later in life, I realized I didn’t always have to be the best. Playing a game for fun is worth something too. Another lesson learned a bit late.

The older I get, the more I remind me of my mother.

So I went to my doctor and he told me there was nothing he could do. I needed to see a pain specialist. No fix. Progressive. Irreversible. I sighed and accepted it. I hoped there was something he could do. Nope.

We all miss stuff. Some of it intentionally, more accidentally. Sometimes, I miss something important because I’m busy ignoring something else.

I am an apple. Mom was my tree. I fell, but not very far.

AN AWFUL LOT OF POSTS BUT WHO REMEMBERS THEM? — Marilyn Armstrong

9,947 published posts. I know that’s not quite 10,000 but it’s close.

Now, the minuses:

Tom: 400
Ellin: 525
Rich: 1,000
Garry: 1.000

So of the 10,000 posts, about 3.000 were written by other authors and probably another few hundred were re-blogs, so call it 4,000 written by other authors or re-blogs. I’ve probably written about 6,000 posts of my own. That includes most memories of childhood that were not published in my book … or are parts of the book or rewrites of chapters of the book.

Today’s statistics

About half of my posts were photographs, though even there, I tend to include writing even when the majority of the post is made up of photographs. But not always. It depends on how tired I am when I put the post together. And how many pictures I have.

So let’s say between 4,000 and 5,000 posts were exclusively mine. Still a lot of writing. Strangely, I wrote a lot more than that during my professional writing life. News writing, advertising, and documentation included thousands of pages and a mountain of research. I don’t remember how many books I wrote or how many kinds of software I wrote about. Or for that matter, what subject matter was involved.

I do not know if this is related, but for the last few months, I’ve been terribly tired. Aches and pains in many or most of my joints. Even my fingers, arms, shoulders, and occasionally my neck. If I don’t take pain drugs, I can’t stand up. Actually, it’s my inability to stand that’s my clue that I haven’t taken my medicine. I try to stand up and I fall back down.

“Oh, right,” I think. “I guess it’s medication time.”

I recently had a major three-day checkup on my heart. All things considered, my heart is doing very well, especially in view of all the surgery it has undergone. The implanted valves are working. The ventricles are pumping enough to keep the correct number of red blood cells flowing through veins and arteries. Whatever is wrong, it’s not my heart. So, whatever is going on is probably not lethal … at least not yet.

The neurology department did a major checkup on my brain (such as it is) and proved that (1) I have a brain so it’s not just a rumor, and (2) it’s more or less normal, at least neurologically. I’m not demented. I don’t have Alzheimer’s, or any sign of a brain tumor.

In fact, having changed medication for my spine, my headaches have almost entirely gone away. Proving my point that they should stop looking at each little thing and start looking at my entire self. I’m pretty sure they might find more connections.

To quote a song, “Dem Bones“:

Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Now shake dem skeleton bones!

The toe bone’s connected to the foot bone,
The foot bone’s connected to the ankle bone,
The ankle bone’s connected to the leg bone,
Now shake dem skeleton bones!

The leg bone’s connected to the knee bone,
The knee bone’s connected to the thigh bone,
The thigh bone’s connected to the hip bone,
Now shake dem skeleton bones!

Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Now shake dem skeleton bones!

The hip bone’s connected to the backbone
The back bone’s connected to the neck bone,
The neck bone’s connected to the head bone,
Now shake dem skeleton bones!

The finger bone’s connected to the hand bone,
The hand bone’s connected to the arm bone,
The arm bone’s connected to the shoulder bone,
Now shake dem skeleton bones!

Dem bones, dem bones gonna walk around
Dem bones, dem bones, gonna walk around
Dem bones, dem bones, gonna walk around
Now shake dem skeleton bones!

This is especially relevant to me because my spine seems to be the source of most my problems, not counting my heart, my missing stomach, and ye olde cancer.  So my good doctor sent me directly to the lab. I went to the one at Dana-Farber because they are much faster than the hospital and there’s a guy there who can ALWAYS find a vein. In ONE shot.

Meanwhile, I should be figuring out what I’m going to write for tomorrow, but surprisingly, that was not what I was thinking about. I was wondering what, if anything, the test would find. If they found something, what might it be? If they don’t find something, there’s simply got to be a reason why I feel this way. I never want to do anything or go anywhere. I’m too achy and tired. I don’t even want to talk on the phone.  I felt less tired after major surgery than I do these days, so something has to be going on. I would hope this isn’t a preview of the rest of my life!

So I didn’t get new pictures of my newly opened Christmas Cactus flowers because by the time we got home from the doctor, laboratory, and grocery store, it was dark. I’ll take pictures tomorrow.

Note that there are any number of versions of the words to “Dem Bones.” In case you find another version and the words are not quite the same.

LOCAL NEWS FROM UXBRIDGE! – Marilyn Armstrong

So what have I been doing with myself? It certainly hasn’t been creative writing or photography. Mostly, it has been medical. Yesterday, I spent the day with the valve specialist and got the best news of the month. My heart is doing well, exceptionally well considering how bad it was when they worked on it five years ago.  It’s pumping, the valve is working like a new valve should. My bypass is open and moving and the pacemaker is working fine.

I wanted to know why I am so exhausted and he said whatever it is, it’s NOT your heart because that’s fine. Which brings me back to arthritis and my spine. It’s the same old story which, I guess, will never end. I frequently need to remind myself that no matter how miserable my busted spine and arthritis make me feel, they are not going to kill me. Also, the rest of the exhaustion probably is the fibromyalgia which is acting up for no known reason.

That’s the thing about fibro. There’s never a reason why it does what it does. There are no tests for it, no medication that works. You can’t even get a proper diagnosis because there isn’t any except the intuition of your doctor. There’s a definite link between arthritis and fibro … as well as rheumatoid arthritis and Lupus. But what the link is, exactly, no one knows.

It’s hard to diagnose and essentially impossible to treat. Nothing seems to make it better, but a lot of stuff can make it worse.

To keep myself functional, I’ve been trying to get more sleep, to not push myself when I’m already tired … and keep my feet up because the swelling in my feet and ankles is apparently a side-effect of one of the blood pressure medications I take. And no, I can’t change medications because these are working really well and when the meds are working, you don’t change them so your ankles will look better.

I did want to know if there was any chance I could get a more modern pacemaker. Mind you, they have not improved the functionality of the pacemaker. They are still exactly the same. What they are improving are the cases, making them thinner, non-magnetic and more appropriate for a woman’s body. Mine is so big I can feel the wires.

But changing pacemakers isn’t a minor thing. It’s a life-endangering issue, so unless it stops working, I keep this one. With this one — which is magnetic — I can’t have an MRI. I hope I don’t need one!

Despite the downers, most of the news is good. Mainly, my heart is working and my son is lucky he didn’t inherit it.

Other stuff? We’re now in the pricing new gutters for the house. The ones we have were improperly installed and have never worked. I’ve known that for more than 15 years, but it never occurred to me that a lot of the rot on the house is because of those non-working gutters.

LeafGuard wanted more than $7000 for new ones. $7000? Seriously?

The actual real-life prices are closer to $1100 to $1400, which I think we can manage. The back door will have to wait for warm weather to come around again, but if I can get the gutters up before winter, we might be saved from the giant ice dams of winter and a lot less rot!

Our house, some snow, and the fence …

If you live in a warm climate, you might not know that one of those big ice dams can weigh hundreds of pounds. If one clunks you on the head, you might not wake up. We had a friend die of a falling ice dam and he was born and raised around here, so he knew better. There’s something irresistible about trying to knock down those ice dams. It’s stupid and damages your roof, but people still do it.

I’m still trying to decide whether or not to change insurance providers. Tufts, the most popular (with good reason) has none of our doctors in its plan, so they are out. That leaves Blue Cross (which we have) or HarvardPilgrim. Both are good. Blue Cross is a little bit less money but offers fewer other “advantages. Harvard Pilgrim pays you for more of your tooth stuff and also for eyeglasses. Also, they actually will pay for inhalers.

But if I change plans, we get into trying to move my medical records. This ought not to be such a big deal, but because every hospital and medical group has its own plan and its own software and doesn’t mesh with anything else. When you’ve had a lot of surgery and transplants and all that stuff, you wind up with pounds of records. I have a crate full of my medical records which I keep in the car because who know who will want to see them? And there’s a lot of stuff NOT in there, too. All the information from when I lived in Israel and before that, in New York (before computers, too). So much stuff, I don’t remember a lot of it.

I’m thinking about it. Not an easy decision.

Meanwhile …

On one side of our loveseat, there are three tables. One holds a very small lamp that’s almost always on. The middle one used to be part of my bedroom set, but moved to the living room when it didn’t fit in the bedroom. It’s really ugly, one handle is missing, and it’s covered with bills that need paying, others that need filing, miscellaneous odds and ends for which I have no “home” –my extra eyeglasses and all the paperwork for medical plans I am fully intending to read. Any day now.

The final table is empty. That’s where I put my computer. I have a lapdesk to work on, but when I move the computer, that is its home. It’s an old piece and if I refinished it, it might actually be quite nice, but right now, it’s just old and worn out.

To find an affordable table that’s 48 inches long, about 16 or 17 inches deep and standard table height has turned out to be a challenge. I think I’ll wait until spring and do yard sales when everyone is trying to get rid of their old stuff.

For reasons I find incomprehensible, everyone is selling “retro” television platforms that are exactly the right size. The problem is, these were ugly when they first came out. I’m betting they’ve been warehoused since the mid-fifties and someone said: “Hey, let’s make some more money, call them “retro” and sell them now. Retro is very “in” these days, right?” They are truly unattractive.

If that’s my choice, what I’ve got is already unattractive — and I own it, so it’s free. If ugly is what is available, I guess that’s the way it’ll be. These are the days when I wish I had some carpentry skills. I could just build a box of the right size, throw a cover over it and VOILA!

Maybe a few wooden crates?

WE MADE IT – Marilyn Armstrong

The first thought I had this morning was “The phone is ringing. Answer the phone.”

Getting to the phone from bed is a stretch and a twist. I could make it easier if I moved my Disney “Someday my Prince will come” lamp. But this would also make it more difficult to turn the lamp on and off. Since I use my lamp more often than I answer my phone, the phone stays put.

Regardless, answering a ringing phone from a dead sleep is one of my more acrobatic moves. Most times, when it rings early in the day, it is either a telemarketer or a doctor’s office reminding me about an appointment. This time, it was a friend from whom I was glad to hear.

“Hey, Rob!” I said. You’ve got to love Caller ID.

“I’m alive,” he said. He sounded great. Considering he had just had two heart valves replaced during the previous week, that’s not such a small thing. I was amazed, delighted and impressed he sounded so perky and clear-headed.

Rob goes way back into the early teenage years of my life. We met at the college radio station. He was 13. I was 17. I felt very superior since I was obviously four years more mature than he was.

He always had a baby face, full of freckles. He still does, though the hair has become mixed with gray. Our lives have continued to intersect throughout the decades. When he was 14, he got cancer. He was treated. Went into remission. Decided to skip college because he figured he was going to die young.

Not.

He taught himself computer programming and morphed into a software developer. He learned to fly. Bought a small plane. I got to fly it too, even though it was a pretend flight as “co-pilot.”

It was fun, scary, and made me realize I love to fly. As a passenger. No piloting for me, unless I can grow my own wings.

He went to live in Brussels. I went to live in Jerusalem. Both of us came back and got married. My first husband — with whom we were all friends because he ran the college radio station where we met died following a mismanaged mitral valve replacement. I was married to Garry by then, having met Garry at that same radio station.

No exaggeration. Everything started there.

First dawn of spring 2017

So you can see why everyone in our crowd is more than normally nervous about heart valve replacements, even though Jeff’s death was at least partly his fault though I think more the result of an arrogant doctor who failed to take fundamental precautions during post-operative care.

Hearing from Rob was heartening. He had two valves replaced, the mitral and the aortic. He had previously, some years back, had a coronary bypass, so he was a little cranky this surgery. He takes exceptionally good care of himself — and his wife, Mira, would personally fight back death with her bare hands. I wouldn’t mess with her.

We had talked several times about surgeons, hospitals, mechanical versus tissue valves. I explained why I preferred tissue. No blood thinners and with all the other medical issues I’ve got, who needs to deal with potential bleeding issues too? Rob is not exactly free of other medical problems, either. He’s got his original cancer lurking. He will never run out of things to worry about.

Nonetheless, he sounded terrific. Alert. Alive. He had made it. If you live around here and you need serious heart surgery, I highly recommend Beth Israel. They are terrific. If there’s such a thing as a great hospital experience, you will have it there. I don’t say this lightly, having been resident in pretty much every one of Boston’s highly-regarded facilities.

It was deeply reassuring to not lose another friend. Given how small our “herd” has become, we try to grow closer. Because now, we really know time isn’t forever.

We are a strange herd of oddballs — musicians, writers, artists, mathematicians and more. Long may we live.

ONE THING I DID NOT WANT TO BE – Rich Paschall

Old, by Rich Paschall

When you think of all the things you want to be when you grow up, “old” probably is not on the list.  You may think about being a doctor or nurse.  You may consider lawyer or politician.  Fireman or police officer may be on your list.  In fact, in your elementary school days you may have changed your mind many times. It is OK to dream about the future and fantasize about what you should do some day.

If superhero is on your list, you may have to give that one up rather quickly, unless you are Robert Downey, Jr.  He is still playing Iron Man past the ripe old age of 50.  I guess that is a commentary on keeping yourself in good shape.  Of course, he is just play acting, like we do as kids, and he certainly has a stunt double.  Your own life does not come with a stunt double, sorry.

If we give it any thought at all while we are young, of course we want to live a long life.  Therefore, we do want to get old.  If accident or disease does not rob us of life too soon, then we will indeed get old.  It is all the things that go with it that I am not too pleased about.

Contemplating the years

Contemplating the years as the sun sets.

I did notice the changes in my grandparents as they got older.  I am certain that I threaded needles for both my grandmothers at some point in time.  I knew they could not see as well as when they were younger, but I never thought about that being me some day.  Yes, I can still thread a needle, but I probably have to hold it at just the right distance in order to do so.  In fact, I really need trifocals, but I have settled for two pair of bifocals instead.  The bottom part is the same on each, but one pair is strictly for the computer.  The top part of the glasses are set to optimize the view from where the monitor should be, a little more than arm’s distance away.

This is not fooling anyone, of course, not even myself.  People can see I switch glasses in order to see.  I should have gotten the same style glasses so it would be less obvious.  When I am on Skype, and can see myself back on the screen, I really do not like the look but I am stuck with them for a while.  At least glasses have gotten better and these are not as thick or heavy as ones I wore years ago.

72-LensCrafters-Auburn-Mall_22

As my grandfather got older, I noticed he sometimes used a cane to help him get up, or walk around.  When he was in his 80’s, he never left the house without the cane.  He just might have too much trouble walking while he was away. Sometimes when I walk past a window or mirror, I think for just a moment the reflection I see is my father or grandfather.  My stepmother once said that I should take it as a complement that people see me as my father, since he was so handsome, but I began to think they saw me as they saw him later in life.  That is, old.

When you see pictures of me, you generally will not see the cane.  I set it down for the shot.  Years ago my doctor sent me to a sports medicine guy for a foot problem of still undetermined origin.  Maybe I was playing sports in the park long after a time when I should have moved on.  Maybe I suffered some trauma that came back to get me.  Maybe it was related to some disease I contracted.  In any case, I had it operated on, which did not help.  Years later I had another operation.  That did not help either.  I had many procedures in between.  Was it just an issue of getting older?  We will never know for sure.

I have heard it said that the aches and pains we feel as we get older are not a natural part of life and we should not just accept them.  Perhaps some accept them when they could feel better, but I have never accepted them.  I have spent a good deal of time getting to know my doctor and all that goes on in his business.  Yes, I might as well interview him a little, he interviews me a lot.  Together we have looked for solutions to my various problems.

The Gabapentin for the foot nerve pain does not seem to eliminate the problem, even if it lessens it.  The Lidocaine patch may numb the pain, but I cut the patch down because a completely numb foot is not a good thing for walking and creates a dull pain, which actually is not much better than a sharp pain.

My doctor does not like my diet or my cholesterol.  He seems to cast a skeptical eye at my insistence that I watch the cholesterol rating on the food I buy.  That does not include restaurant food, however.  Or what John cooks for dinner.  Statins did not work.  They created muscle and joint pain I could not stand.  The non-statin anti-cholesterol pills are not as effective, but hold less side effects, apparently.  Other problems and medications have come and gone. Parts wear out, you know.

Recently a high school class mate of mine wrote to say he had finally gotten in to a senior center he had applied for a while ago.  He had a variety of health issues in recent years and needed to get into such a community.  I wrote back that I could not imagine that any of us would be talking Senior Center, because it seemed like just a few years ago we were in high school together.

With any luck at all, old age will catch you some day.  You will probably feel it coming.

Related: Share If You Are Old Enough To Remember (humor)
To Not Grow Old Gracefully (Sunday Night Blog)

FAMILY MEDICAL HISTORY – Marilyn Armstrong

We do not know nearly enough about the health of our parents and grandparents. We don’t know enough because they didn’t care to tell us about them. The freedom we feel know to discuss our ailments and cures is relatively new. When I was a kid unless it was lethal or it directly affected our day-to-day lives — no one said much.

Sometimes we got “hints.” Clues. Listening to the grownups talk sometimes dropped information that we could later put together. We learned more as we got older, especially if we were nosy enough to ask, but mostly, people in general across races, ethnicities, and religions, people didn’t talk about their medical issues.

It simply wasn’t done.

I knew, for example, about my mother’s breast cancer because it was unavoidable. And also, because my mother talked to me about grownup things to a degree that was unusual in parent-child relationships at that time. Also, knew about her radiation therapy because she had to explain why she could not go into the sun at all. They don’t do radiation (or surgery) like that now, but back then — well, let’s just say they have come a long way since then. They may not be able to cure cancer, but they treat people who have the disease with considerably more kindness.

I also knew about my father’s bone disease that came from being dragged by a car when he was a child and because they didn’t yet have antibiotics, it got into his bone and was not healed until he was in his fifties.

I knew who needed eyeglasses. Who was near-sighted. Who was far-sighted. My mother’s far-sightedness was a bit amusing because as she got older, the books she needed to read needed to be farther and farther away. At one point, she could only read the phonebook when it was on the floor and she was standing up.

What I didn’t know was close to half my family had been born with club feet. I knew my then-husband had been born with club feet (it was hard to miss), but because I knew nothing about its presence in my DNA, I didn’t know that Owen had a pretty much 100% chance of coming up with the same problem. As did Kaitlin, too. It turns out — and no one told us — that club foot is a very common genetic ailment among children. Almost every family has traces of it in their DNA.

But no one mentioned it so I was genuinely surprised when Owen showed up with it.

I didn’t know my father’s heart problems were genetic or that I had the same problem because they are not typically tested for. I’m pretty sure my father didn’t know he had it. He was told he had “congestive heart failure” which is a bucket term the medical community uses to describe just about every kind of “old age” heart problems.  Except that they don’t just show up only in old age. Young athletes die on basketball courts and football fields because no one knew they had Hypertrophic Cardiomyopathy. It’s not something a family doctor can hear in a stethoscope. You need a specialist and unless someone knows it runs in the family, no one checks.

Garry knew about deafness. It was kind of obvious. But he didn’t know that both parents suffered from Glaucoma. Now he has tests coming up. Bad news? Yes, but not terrible news because treatments for it have come a very long way. Use your eyedrops, get regular exams and you are good to go.

But he didn’t know. Because people didn’t talk about it. He did vaguely remember his mother using eyedrops. When he called his brother later in the evening, he discovered both parents had it.

My thoughts? Tell your kids about your medical history. A lot of things are genetic and we don’t always know it. Some things are genetic and the link has yet to be discovered.

Discovering your newborn has something you had no idea ran in your family is a hard way to discover the truth.

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.

HOW GO YOUR YEARS? – Marilyn Armstrong

When I was in college, two of the women with whom I became friends were suicides. Neither of them was happy, but I would never have guessed either of them was suicidal.

One of them was just 19 when she killed herself. The other was 21.

For this reason, I have never assumed “everything is fine” for anyone. Even when you ask, you will only know what you are told and that is rarely the entire truth. People are secretive about their deepest fears and thoughts.

“How are you?”

“Everything is fine.”

“You don’t sound fine.”

“No, really. I’m fine.”

How many times can you ask before you realize you aren’t going to discover more? When people mention that aging makes them “think about mortality” I realize I began thinking about mortality when Karin died and then again when Anna jumped. Also when a young couple, just married, crashed their car into a truck and died on the highway.

Yet again, when my first husband got kidney cancer at 34 and lived, but still died young of heart disease and medical errors. Then my brother died of pancreatic cancer at 61. One of Garry’s colleagues — in her early 40s — died while waiting for a bus in Cambridge. When my first husband’s father died of his second heart attack at 52, I was pregnant and sorry he never met his grandson. For that matter, Jeff died at 53 and never met his granddaughter.

I knew a young person who died of a heart attack before age 21. Another internet friend, Rosa, died last year of a heart attack. I only found out when her mother called to tell me. She wasn’t yet 35.

And of course, there are all the friends our age who are battling cancer, dementia, heart conditions, not to mention the ones who have “beaten” cancer, but of course, you never really beat cancer. You are remitted and that will have to do.

When people complain about not being as active as they were when they were many years younger, I think they are missing the point. Age or disease can do you in at any point in your life. You don’t have to get old. You can be 21, an athlete, and collapse on the court.

The Dark Lord will have his way. When and how it hits you is partly how you used your body and your DNA. Depending on your constitution, your ability to walk, run, ride, or whatever you do may be compromised. Even eliminated.

Then again, are you breathing on your own? Do you get out of bed in the morning, even if it is a struggle? Do you find joy in your life? Do you laugh? Are there people you love who also love you? Is life interesting? Are you still curious to know what’s going to happen?

If any of these things are true, yay for you. You are alive.

Mortality is always with us, whether we are old or young. We may not be paying attention to it, or we may be under some delusion that we are exempt from “the end” because we exercise and eat right. But there will be an end.

Maybe, as Jeff used it say, it’ll be a runaway beer truck. Or something unexpectedly medical. It may be tomorrow or in 60 years. Whatever time you have, be gracious and grateful. Many people don’t get a life full of years. Others get the years and manage to be miserable anyway.

Enjoy your years, however many you have. And while you are at it, be nice to the people you know and especially those who love you and who you love. Kindness is the least expensive and most valuable gift we have to give.

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?

KEEPING THE WATCH – Marilyn Armstrong

FOWC with Fandango — Watch

Lately, I’ve been convinced there’s a brain tumor in my head, so I was glad to get to the neurologist. Finally.

We always laugh at how gorgeous TV doctors are. This one could go directly to her own TV series, no problem. She is beautiful and Garry paid very strict attention to every word she said. I don’t think he ever paid better attention to any doctor in his entire life.

Mostly what she was doing was asking a lot of questions. This can be confusing because a lot of stuff happened a long time ago and frankly, I simply don’t remember. Did I ever fall on my head?

Probably but who knows? Did I ever have meningitis? Well, actually, yes, I did. In Jerusalem. It got into the water and pretty much everyone in the city picked up viral meningitis. Viral (as opposed to the bacterial kind which may kill you) just makes you wish you were dead by giving you a raging high fever, a headache which is like every headache you’ve ever had in your entire life packed into one huge pounding head … and a full body rash. This is what makes it unique. The rash. Otherwise, it could as easily be Typhoid or Tick Fever or any of a number of insect or water-borne diseases.

We all watched me try to walk toe-to-toe (a lot of weaving — I’d never pass the drunk/sober test) and I took a computer test to see if I’m getting Alzheimer’s (probably not yet, but the future remains bright), and whether or not I can remember and recognize random patterns on a screen without a damned mouse to manipulate.

The controls on the machine were really aggravating. But I still came out pretty much cognitively “all there” minus whatever I’ve lost due to hanging around the computer too much and getting old.

The results? No results.

I need an EEG and then, maybe, a heavily and carefully supervised MRI to keep me from exploding (literally) and ruining their expensive machinery. Not merely ending my life, but ending half a million dollars worth of really pricey electronics.

The suspicions?

Complicated migraines (my best guess) or … epilepsy.

I just learned a lot about epilepsy. It is the most common neurological disease in the world and one out of every 26 people have it, had it, or will get it.

You can get it for no reason, fall on your head, get a disease (encephalitis or meningitis) … develop it from too much stress. Which means that everyone holding particularly stressful jobs has probably got it. There a version of it called “Sunflower Syndrome” which is photosensitive epilepsy triggered by lighting. Avoid dance clubs with flashing lights, watch TV in a well-lit room, wear sunglasses, don’t stare at the sun, etc. I love the name, though. “Please turn down the lights. I suffer from Sunflower Syndrome.”

Frozen rocks in March

All of this is made much more complicated because I have heart disease, had cancer, had meningitis, and probably fell on my head, but who can remember? Also, you can just pick it up for no known reason at all. It can be genetic — or not. It can be caused by wrong vitamins, not enough of some mineral, changing medications, stopping a medication you were taking, or not taking something you should be taking.

Driving isn’t a really good idea, although not illegal. Usually.

I don’t know what it is, but it isn’t M.S. and it’s probably not a brain tumor. Those are two good reasons to celebrate.

I’m making pizza for dinner.

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.