Tag: Health

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.