A MIDWEEK UPDATE

Time for an update!

The visiting nurse made her final visit today. I am officially able to be on my own. I have been assured no matter how I feel, I’m doing really well.

All four of my incisions itch. The big one down my chest, the medium one on my shoulder and the two smaller ones on my left leg. I dare not scratch but oh, how badly I wish to claw at those incisions!

My chest still hurts. I can’t pick anything up. It’s an interesting cocktail of sensation. My guts are in knots because it appears I have picked up a case of The Stomach Virus That’s Going Around. Garry has it, so it shouldn’t be any surprise that I have it too, but the timing could be better. Keeps things lively in an unpleasant way.

It turns out what’s been making the chest pain worse is my computer. Not the computer per se. It’s the picking up and putting back that’s making my sternum hurt, so now I have to ask Garry to hand the computer to me, then put it back when I’m done.

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It’s almost as bad as needing help to go to the toilet. Okay, not quite that bad, but bad enough. And this is my ultrabook, the lightest computer I own. Not counting the tablet which is under-powered and runs Windows 8, a hateful operating system that renders it even more useless than it would otherwise be. Seriously useless.

But — I digress.

am getting better. I can’t see the changes from one day to the next, but I can see the differences from week to week. I’m a lot stronger than I was, but it’s infuriatingly slow.

Impatience has always been my nemesis. This time I have to find patience. I can’t let myself get stressed, can’t push the process. It takes time for bones to heal, for a new valve to settle down, for a reshaped ventricle to work properly. It’s only three weeks since I came home from the hospital. It will be at least another seven before I can haul a laptop without help.

I’d heave a sigh, but it would hurt.

GROWING OLDER

Marilyn and I are watching a “NCIS” episode involving Gibbs and his dad. Mark Harmon and the late Ralph Waite. We’ve seen it before but it’s an especially poignant show because Waite died just a few months ago and the story deals with a difficult father son situation.

It also touches home on aging and health issues. Gibbs’ dad, his driving license just revoked, is desperate to find an old war buddy who is dying. Gibbs is preoccupied with a case and impatient with his dad. Conversation is awkward. It reminds me of another father and son.

My dad was never big on intimacy. We’d talk about sports and men’s clothing. Towards the end of his life, My dad talked a bit about frustration with his health. He was a big, strong man who was very handy for most of his years. Now, he mostly sat in the dark as his strength ebbed. Conversation was even more difficult. Even sports and men’s clothing drew little interest. The award-winning TV news journalist was having difficulty talking to his father. The image of my father, the younger man, kept flashing through my mind as we sat in silence. I made a silent vow that I would not become my father, wrapped in silence.

Almost 20 years later, that vow is still flashing through my mind. For one thing, I’m no longer the perennial young man whose pictures adorn our home. Mortality has made its presence known. Marilyn is fighting to regain some semblance of quality of life after complex heart valve surgery. She is a proud, fiercely independent woman who doesn’t like asking for help. It’s awkward for both of us. We make jokes about our so-called golden years but we don’t really laugh.

Photo: Debbie Stone

Photo: Debbie Stone

It’s funny because we actually look younger than people our age a generation ago. But it doesn’t help when we hear our bones creaking. It’s certainly no joke to Marilyn who wonders if she’ll be able to do some very basic things to re-establish her independence.

Marilyn has had health issues most of her life so she is no stranger to pain. Fittingly, she sometimes looks at me wryly when I complain about aches. Who do I think I am? Well, I am that vain guy who burned through a lot of prime years with little regard about paying the piper.

The dues are coming in. But the reporter in me must acknowledge there are so many others who have more serious health issues. That’s probably an understatement if you just flip through today’s news stories. Still, growing older isn’t the picture perfect stuff of those old movies.

Print the legend!

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JUST ANOTHER UPDATE

I’m getting back into life. Progress feels rather glacial from my perspective but it’s undeniably progress.

foyer and lightI can write, as long as I keep stuff short. I still can’t focus long enough to read much but I’m getting there. Close, very close. Finding a comfortable position in bed remains a major challenge because I can’t yet lie on my side without feeling like my chest is being crushed. I’ve been assured it will come, but not yet. Soon-ish.

I tire quickly but each day is a little better than the one before. I have bursts of energy early in the day then I wear down. By 3 or 4 in the afternoon, I’m beat and I hurt. Still, last week I was exhausted by noon. Change comes and I guess one needs to take the long view.

I did I lot of stuff yesterday. We went to the grocery store and the pharmacy. I did the stairs — both flights — three times. I hiked up and down the driveway — our own bunny slope. It was a lot for me. And I was released from physical therapy ’cause I’m doing so fantastically. I have photographic plans for today.

Except I don’t feel well. Or not well enough, whatever that means.

I guess how one feels is a matter of “compared to what.” Compared to two weeks ago, I’m feeling great. Compared to last year, I’m a puddle of misery, a complete disaster.

It just depends on how you look at it … and whose body in which you are living.

 

ADVENTURES IN HEALTH CARE OR LACK THEREOF

It snowed Wednesday. Just an icing but it prompted a lot of people who actually had to get their cars rolling first thing in the morning to say “This is a joke, right?” A New England joke. The day before, temps had been in the high 70s, I had turned the heat off, so Wednesday saw me and Garry huddled on the sofa in sweatshirts and blankets. Would the cold last long enough to justify revving up the oil burner? Or should we gut it out and shiver until more seasonal weather prevailed? Medicare-Payment-Methods-1024x768 Being so recently sliced and diced, I was not in fighting trim. By evening, I went for heat. Shivering was bad, but sneezing? Wow. That’s a killer. I’m still fighting the battle of no PCP. Technically, I’ve got one. I’ve just haven’t met him. Yet. I’ve got a date, May 2. Not so far away, but far enough. I hope this one’s a keeper.

In the meantime, I’m self-medicating everything including my blood pressure. I’m not doing anything crazy, mind you. I’m merely taking the BP meds I was taking before the surgery because I don’t have anyone to monitor me, no one to call or consult.  Other than the visiting nurses. They are wonderful and deserve medals.

Except they are all leaving because I’m doing so well. Ironies piled on ironies. My self-medication program is working. I’ve got my BP back into the “good” range from the “outta sight” levels of last week. Adventures in health care indeed. This is closer to adventures in lack of health care. How weird I’ve got medical coverage — good coverage — but no doctors. What a world, eh?

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RAIN AND A CORNER TURNED

I’ve turned some kind of corner, physically. Pain level dropped a lot and suddenly. As the evening wears on, I wear out, as if all the pains of the day collect and concentrate in my chest and shoulders. I do the best I can. It’s better. Definitely.

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I wanted to go out today. Take a camera, maybe the little point and shoot because it’s so easy, but the rain came. I should have known. The weather yesterday was weird … very warm with a powerful wind, yet sunny. During the night, the wind died away and the rain came and this morning, it’s all drip, drip, dripping … the slow saturating rain of April.

Just the kind of watering the flowers need. They suck it up and grow tall and strong. There will be a burst of color now. Not today, not while the water is falling from the sky …. but tomorrow, maybe or the day after. Whenever the sun next makes an appearance.

I dreamt last night the cancer is back and quietly eating me. Three nights in a row, I’ve dreamed the same dream and it frightens me. It could be true. I don’t know. I had a chest x-ray and it was clear … and just the other day … so how bad can it be, right?

It’s so gray out there. So damp. The dogs hate this weather. Snow they will play in and any other weather, no matter how cold … but not this steady rain. There will be no photo expedition today. I shall wait.

Life’s on hold. Everything is waiting for me to be ready for it, ready to live again. I’m sure when the sunshine returns it will cast off so much of the haunting sadness I feel. I believe, I do believe.

STUMBLING DOWN THE WINDING ROAD

They warn you when they send you home it will be hard, especially the first few weeks. They warn you about depression. It seems to be part of the heart surgery package and hits pretty much everyone to some degree. Some of us worse than others. The emotional healing component is a wild card. Assuming that physical healing proceeds without incident, there’s no predictable pattern — or much available help — for handling feeling.

There’s a sense of loss, that “something is missing,” though you don’t know exactly what it is. A sense of dis-empowerment, that you’ve lost your dignity, a part of your self-hood. There’s a sense of having been raped, assaulted, beaten down.

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Some feelings result from the very real physical assault of all that surgery. Your body has been invaded, redesigned, twisted, opened, broken and put back together. You may not have been conscious when it was happening, but your body remembers even if your brain can’t recall details.

Waking up after the surgery, I knew something was missing, some part of me was gone and I was afraid to awaken until I found the lost piece. Eventually I bowed to the inevitable and woke up, but becoming conscious was accompanied by a profound sense of loss. I’m not who I was. I know I am — at least technically — better, but it’s hard to imagine ever feeling whole again.

Even after breast cancer and having both breasts removed, the sense of loss was nothing like this. There was pain, confusion, fear … but surprisingly little sense of mutilation.

The complexity of my feelings combines with a sometimes overwhelming physical misery. It makes me wonder why I went through all of this. To what purpose? I know the correct answers to these questions, but as the days wear on and evening approaches, it feels as if I am wearing a too-tight iron brassière. I can feel the hard metal straps cutting into my shoulders and my chest feels crushed. It’s hard to breathe, hard to even think.

I whimper and wrap myself in a heating pad, trying to soothe cramping muscles and twisted bones.

All systems are messed up. Digestion, breathing, skeleton … everything feels off. Sleeping is difficult. Finding a position that doesn’t hurt is a major challenge. I have a headache much of the time. The headache isn’t so bad … it’s just the “insult to injury” part of the process.

I have a little mantra I keep repeating to myself. “I can do it,” I say. “I CAN do it. I can do it. I can.” Whatever it is, I do it.

I can shower on my own. Thanks to one wonderful friend, I can do my bathroom stuff and actually get up and down from the toilet without the humiliation of needing help. I can do small things. Make myself a sandwich, toast an English muffin. Read a bit, Write a bit too. My back took a beating. Whatever they did to me in the operating room, I came out of there with new problems in new places. Oh well. I guess it will heal. Eventually.

My other mantra: “It will get better. It will be better. I will be better. I will be better. The future is worth living.” I mean it. But it hurts.

If it were not for friends and especially for Garry who bears the brunt of both my physical inadequacies and my emotional messiness, I’m not sure I would be able to go on. I know this is taking a lot out of him and it adds just one more layer to that invasive sense of helplessness.

It will be better. I can do it. We can do it together.

I just hope it’s worth it.

 

DOCTORS DON’T LISTEN – GARRY ARMSTRONG

One of the things I’ve discovered about blogging is you can say stuff that you might be reluctant or timid to share in normal conversation.

I’m talking about myself and Marilyn. About the medical profession and patients. Marilyn is an aggressive advocate. I’m passive. I usually try to be diplomatic, relying on the quiet, persuasive approach honed over 40 years as a TV news reporter. Marilyn’s learned you can’t always be pleasant or nice in dealing with the establishment. Be it doctors, lawyers, politicians, merchants or your affable cable company. Nice guys often finish last. Even worse, in the medical profession, their lives are often in jeopardy.

I’ve sometimes thought Marilyn was too judgmental with doctors, nurses, medical technicians, medical office managers or HMOs. Color me naïve and maybe stupid for all my years in the news media spotlight. The past dozen years have been almost a continuing nightmare for Marilyn who has been through myriad operations including at least two near death experiences resulting from one botched surgery. No “Law & Order” vindication in real life.

One of Marilyn’s big problems is pain management. She is in her second week of recovery from complex heart valve surgery. She’s in almost constant pain, 24/7. Mornings are kind of okay when she has bursts of energy and can do some writing. The rest of the day is downhill. She has limited pain relief options. Her intestinal system, after two gastric bypasses (one botched), is ultra sensitive to medications. Moreover, she has reached the limit of surgical fixes to her gastrointestinal tract. If she ulcerates again, it’s over.

Marilyn has been trying to explain this to her doctors. They don’t get it. I’ve been there and witnessed these conversations.

Most of the doctors who’ve seen Marilyn treat her as if she doesn’t know anything about her own body. Even after she explains the details of which medications work and which wreak havoc on her system, they merely nod as if she’s stupid or they know better — without so much as checking her records. They prescribe drugs Marilyn knows will make her sick, ignoring her protests.

We hoped today would be different. A first visit with a new primary care physician (the old ones’ network would not make a deal with Medicare or Medicaid, so all their poor or old patients are screwed). I intervened before the session began. I explained I’ve known Marilyn 50 years. I gave high or low lights of her past dozen years of medical hell. I explained the difficulty Marilyn has had communicating with doctors who’ve often been arrogant and dismissive. In essence, I was giving our new PCP a heads up if Marilyn appeared angry, hostile or anxious. I emphasized pain control was our major concern with Marilyn’s limited venue for such medications.

I thought I’d set things up to succeed. I was wrong! Marilyn’s worst fears were confirmed. Our new PCP said she was unable (unwilling, really) to prescribe Marilyn the medications she needs. “Not,” she said, “In my comfort zone.”

My passive take on the situation has dissolved into anger. I managed to retain my nice guy demeanor but if thoughts could kill, I would be in lockup right now. Somehow, Marilyn has reached inside and grabbed another chunk of fortitude to search for another doctor.

I have new admiration for my wife. I wish I still had the clout to help, to make things right. All I can do is be here, offering support that, maybe, tomorrow will be a better day.

IF YOU CAN’T FIX IT, COMFY FURNITURE HELPS

Ouch! That really hurts! My back’s been a mess since I was a kid. Fell off one horse too many. Rebuilt in 1967 — fusion and laminectomy using saws, drills and chisels — long before micro surgery and instrumentation. I’m not special because I deal with pain. I’ve got plenty of company. Sometimes, too much company. We’re all squished together in an over-crowded lifeboat.

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Me at 20, a year post spinal fusion.

I’ve had a lot of problems with my back over the years. The fusion, made from bone paste taken from my hip, began to disintegrate about 25 years ago. Nature kindly replaced it with a sheathing of arthritic calcification. That’s not such a bad thing because without the arthritis, I’d (literally) fall apart.

Looking at pictures of me in years gone by, I got to wondering how life landed me here. How did the bright-eyed woman become this creaking achy old thing fighting to keep moving under her own power?

Who is this person?

She doesn’t look or act like me. I can vouch for this because I used to be her, but now I am not at all sure who I am or whose body this is. Maybe while I slept, someone gave me an impostor body. I would jump right on the impostor theory except being me is not something a sane person would want. If I had a say in the matter, I would be healthier, wealthier and younger. Some other body, but I’d keep the brain. I like that part of me.

Life changes, sometimes in a split second.

Remember Christopher Reeve? One minute, he was a big, handsome, strapping movie star. A dreadful split second later, he was someone else.

My down hill slide occurred at the pace at which bones and joints calcify. I broke my back when I was a kid. I was reconstructed when I was 19. For the next 35 years, I refused to pay any attention to my spine. I was not going to be disabled. Not me. It was mind over matter and I am strong.

Turns out, mind over matter only takes you so far. Seven years ago, I began to have trouble walking. My balance became erratic. I lost sensation in my feet and miscellaneous reflexes disappeared. (I didn’t yet know about the heart problems which no doubt contributed.)

I went to doctors, orthopedic hot shots. All of them said I need a new spinal fusion, the old one having fallen apart over the long years. Diagnosis: Horrible spine. Solution: New fusion in which I get screwed together using metal rods. After surgery, I would be in even more pain than now, but my spine would be stable. Say what? This surgery would be the 21st century version of the surgery I had in 1967.

I said Hell no and took my case to the top spine guy in Boston, the Supreme Court of spinal diagnosis. He said I don’t need surgery. More to the point, he said the surgery wouldn’t solve my problems.

This time I heard: “Your back has got you through this far, it’ll take you the rest of the way. Pain control, gentle exercise, and recognize your limits. Don’t do anything stupid.” Like fall off a horse? Lift heavy packages?

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There are a lot of members of the back pain club. After you join the club, you usually get a lifetime membership. I finally discovered I have a problem I can’t fix. No amount of persistence, research, medical attention or cleverness is going to make it go away. So I’ve designed the world to make my back happy. We have a back-friendly home. From our adjustable bed, to the reclining sofa, our place is kind to spines.

There’s no moral to this story. It’s just life. If you don’t die young, odds are you hurt. The years roll on, pain gets worse.

I’ve had to accept reality but I don’t have to like it. Sooner or later we all face an intractable problem. Or several. It’s a nasty shock, especially if you’ve always believed you are unstoppable. When you hit that wall, I recommend buying very comfortable furniture.

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WAKE UP SLEEPY HEAD

Today marks a week back from the hospital. I’m not sure what I expected, but I’m pretty sure this wasn’t it. So much didn’t go the way I expected. A friend said it was like taking your car in for an oil change only to discover you need a new tranny. I needed a new tranny, timing chain, rear axle and electrical system.

How could I have failed to notice that the central system of my body wasn’t working? How did I miss that? I was short of breath, true. I had been gradually limiting my activities. I stopped driving. I passed on activities that involved more than very minimal walking … skipping stuff that required I go up and down my own stairs. Gradually, I chipped away at life until my “outside appearances” were few and far between.

I was tired. Not sleepy-tired. Weary. I attributed each lifestyle change to something. Asthma. Bursitis in my hips, arthritis in my back. Blow-back from cancer a couple of years ago. And, of course, the all-time best bucket explanation for anything and everything — getting older.

When I was first informed that my EKG showed “issues,” though the doctors didn’t seem to feel I needed to know exactly what the issues were (did they know?) — when finally all the cards were laid out, I felt blindsided. I had been keeping track of my heart, getting an evaluation and EKG every year. Suddenly, from “no problem” to “big problem”? Heart problems don’t usually just pop up out of the blue. I still don’t know and probably never will if this was a case of misdiagnosis or some weird medical event that went unnoticed amidst the myriad other health crises which have punctuated my last decade and a bit.

Do I blame my doctors? To a degree. For failing to promptly and clearly inform me of what was happening and for giving me terrible, medically unsound advice. If I had followed it, I’d be dead.

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What I expected

Cardiomyectomy (shaving down the overgrown muscle in the left ventricle that was stopping the flow of blood through the aortic valve, causing the mitral valve to work double-time. There was hope the mitral valve would self-repair if the aortic valve was unblocked. Surely, at most, the mitral valve would need repair, not replacement. (Ha!)

What I got

A cardiac catheterization, a totally disgusting, intrusive horrible test that requires you be awake — the absolutely last thing you want to be. Not like you get a choice.

The next day, the aforementioned cardiomyectomy, a bypass and a mitral valve replacement made from bovine tissue (thank you Bossy, wherever you may be).

Three-for-one. Woo hoo!!

But that’s not all, no-sirree. After another few days, when my heart refused to beat on its own (stubborn to the last), it was back to surgery for a pacemaker. Now everything in my world runs on batteries, including me. Sure hope those batteries keep going and going and going.

Waking up – Let the games commence!

Round one: They tried arousing me, but I woke up fighting, struggling. Apparently tried to deck the recovery nurse. I do not remember this, but I have no reason to doubt it. Under the circumstances I’m sure I wanted to deck someone. They put me back under for another 24 hours. They were protecting me and/or the nurse.

“Tough customer,” they said.

Round two: I heard Katy, my new recovery nurse calling me.

“Marilyn, wake up. You’ve had your heart surgery.”

“NO,” I said. Liar liar pants on fire. They were saying it was Friday, but I knew it was only Thursday. What’s more, I was in the middle of a word game and the letter “U” was missing. I could not wake up until I found it.

“Marilyn, you have to wake up.”

“NO I DON’T,” I said.

“Would you like to see your husband? Your friend?”

“NO.”

“You have to wake up. It’s time to wake up.”

“NO.”

Ultimately, I realized the letter “U” was a permanent loss and they were just going to keep annoying me until I stopped saying NO. So I opened my eyes. Instantly knew why I hadn’t wanted to wake up.

Question: How much pain can you be in and still live?

Answer: A lot.

Thus I reentered the world. Screaming in anger, pain, outrage and helplessness. I’m still screaming. Silently.

MARILYN IN RECOVERY: LAZY SATURDAY

This is Marilyn’s 6th full day back home after complex heart valve surgery at Boston’s Beth Israel Hospital. We’re both tired. Marilyn for multiple reasons, me just for fatigue. So, this is a short update. It’s a day for watching silly movies that don’t tax our minds. So far, we’ve seen “Hot Shots! Part Deux” and “Airplane!” The stack of waiting movies includes  “Galaxy Quest,” “Crazy People,” “The Court Jester” and a deluxe set of Mel Brooks comedies.

Marilyn is moving around more on her own. Slowly but without assistance. We received a truly nice gift from an old friend. One of those elongated bathroom seat risers with removable arms. It enables Marilyn to take care of business without help. That’s a big boost for privacy and self-accomplishment. If you’ve been there, you know it’s no small thing.

No visiting nurse or physical therapist visits today. Marilyn is in one of her bright red nightgowns. I’m wearing my “Dog Father” casual bottoms and dog-eared top. The furry kids are taking their afternoon siestas. Dinner is still to be discussed. I’m hoping to keep it simple. That’s my speed.

Marilyn wants to write a blog. She tried valiantly this morning. The brain is working but not her arms or fingers. Matter of fact, Marilyn’s mind is like that of HEDley Lamaar — ‘a raging torrent of brilliant ideas’. She’ll try her next blog when more body parts are in sync.

My usual baseball passion is slightly dormant right now for obvious reasons. I didn’t read the pre-season predictions or watch the Red Sox home opener. Sheer heresy in any other year. It’s a long season. Here’s hoping the team is doing well when Marilyn and I can give them more attention.

Surely, you understand our priorities here. And don’t call me Shirley!!

 

 

MARILYN’S FRIDAY: I’M SHOCKED!

Usually I’d wait til later in the day to write an update post since Marilyn’s return home Monday from complex heart valve surgery. But some funny and encouraging things have happened this morning. I figured I’d best write as coffee is slowly clearing the cobwebs in my mind.

Where to begin? Latest news at the top, right? Okay, Marilyn is waiting for the visiting nurse to arrive for today’s session. Visit number two. We’re properly attired, Marilyn in a clean nightgown and me in my “Dogfather” lounge pants and top.

Diane, Marilyn’s nurse has just arrived. Her first visit. We’ve greeted each other. I continue writing as Diane checks and examines Marilyn

Marilyn was able to put on her nightgown WITHOUT assistance, using her arms and with minimal pain. FIRST time since she came home. Give the lady a hug, kiss and round of applause after Diane leaves.

My Claude Rains moment came a little earlier this morning. I was relaxing on the love seat, sipping coffee and waiting for my brains to show some life. Nan, our Norwich Terrier, was lying at my feet watching Marilyn. Nan is Marilyn’s dog. Her faithful companion. She follows Marilyn wherever she goes. I’m normally ignored. I used to be a household name for more than 31 years as a Boston TV news reporter. I used to be somebody.

Well, Marilyn had to answer nature’s call. She got up by herself from the love seat. Another first this week. No, don’t stop the presses. Not yet. Marilyn walked slowly away and into the bathroom. Normally, Nan would be right behind her. Marilyn’s faithful companion usually follows her Mom right into the bathroom, pushing open the door and moving right up to where business is being conducted. Frequently, Nan grunts like a pig, signaling the other dogs Mom is in the bathroom. They scamper down the hallway and gaze from the bathroom door. Nan sends out sideline reports about Marilyn’s efforts. Wide, wide world of sports!

Not today. Nan didn’t budge as Marilyn left the living room. She stayed at my feet, grunting with satisfaction. Okay, now the “Louie Renault” moment. Marilyn called from the bathroom but Nan never moved. I was shocked! Absolutely shocked!

Diane’s just wrapped up her visit with Marilyn. They’re laughing. Marilyn’s blood pressure and heart rate look pretty okay. Here’s hoping the rest of this Friday is good.

HEIGHT OF TOILET SEATS AND OTHER EPIPHANIES

I’m writing for Marilyn today. Not ghosting just writing what she’s thinking. It’ll be awhile before Marilyn can actually do what she does best. Write wonderful blogs that touch many hearts and lives.  It’s the beginning of  her third full day at home. Marilyn’s return from nearly two weeks and five heart surgeries at Beth Israel Hospital is full of surprises, revelations and epiphanies. Not the C.B. DeMille grand scale things. Just very ordinary stuff we take for granted.

Take toilet seats, for instance. When you’re taking care of business do you ever notice how high or low your throne is? Most don’t. The biggest controversy is whether the guy remembers to put the seat back down. Well, listen up, Pilgrim!! A discovery preferably forgotten came when Marilyn was home alone. Nature called and Marilyn answered.

Sitting down on her throne, unlike comedy, was easy. Getting up, like live television, was hard and full of unpleasant surprises. The seat was lower than Marilyn realized. Gravity only takes you DOWN, she now recounts with a wry smile. Arising from her throne required a monumental effort. Marilyn says it was like having no legs. She kept trying, losing track of the number of efforts. Marilyn finally rocked back and forth, maybe a little Ray Charles movement, and after many dizzying efforts, she staggered to her feet. It literally took her breath away!!

Why was Marilyn left to her own devices? Mea culpa! I’d run a few errands. Marilyn asked me to do them as quickly as possible. As usual, I listened but didn’t follow her request even if I had the best of intentions. Good intentions don’t count when a person is left unattended in fragile condition.

Then there’s coffee. Any idea what nearly two weeks of hospital coffee will do to your palate? I had a sip while visiting Marilyn and my tongue rebelled. One of the first things Marilyn noticed upon her return home was the sound and smell of coffee dripping in the morning. Her first cup of real coffee elicited sighs and smiles.

Another delight for Marilyn was a shower. A REAL shower in her own bathroom. Using her own soaps and, with a little help, washing her hair. More sighs and smiles mixed with some groans as Marilyn gently cleaned the sensitive post surgery areas of her body. Wrapped in her own comfortable robe, Marilyn felt refreshed until another surge of pain jolted her reverie. Each day is a mix of small bursts of energy and longer periods pain coping that’s part of her recovery from the heart surgery that was so much more complex than originally thought.

Finally, there’s sleeping. We have one of those super-deluxe beds that lowers and raises your head and feet. It also vibrates, helping with some aches. That’s the good part. Marilyn aches from head to toe, in varying degrees 24 hours a day, even when in bed. Getting in bed is a chore. Finding the right position is another. Placing a heating pad over her bad right shoulder (muscle torn sometime during the hospital stay) is still another job. Getting quality sleep is a dream. A major problem occurs when nature calls during the middle of the night. Marilyn needs help getting out of bed and into the bathroom. I’m her faithful companion. But, as many of you know, I’m very hard of hearing. I take my hearing aids off before going to bed. Normal procedure.

However, when Marilyn needs my help at three o’clock in the morning, she either has to yell at me or hit me. I prefer the yell. It’s very, very frustrating for Marilyn. Consequently, both of us sleep fitfully. Marilyn because of the pain which never really subsides. Me because I hope I hear the nocturnal call for assistance. This would make for a bad Lifetime movie. But we’d gladly take the money.

Yesterday, Marilyn had her first visits from a visiting nurse and a physical therapist. We have a game plan. Better times are ahead, they promise. We can hardly wait!!

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UPDATE: GAME ON

No cancellation this time. Tomorrow, off to Beth Israel for the cardiac catheterization. Thursday, terrifying surgery.

I think my feelings define ambivalence. I don’t want another delay … but I really don’t want surgery, either.

Out-of-Office

I’m entering that familiar tunnel, the one in which there is no control. Life, death and the future are in other hands. Perhaps they always are, but it is at times like this that we notice.

I have scheduled posts for the next 10 days and Rich has a bunch coming up too. Garry will post updates as he has information and can get to a computer. Meanwhile, be well, blog on and I’ll see you later.

SUBLIME TO RIDICULOUS IN ONE EASY STEP

Daily Prompt: Linger

Right now, my entire life is one long linger. I am waiting for the other shoe, figuratively speaking, to drop. Waiting to be repaired. To be hurt, then to recover. I may not show the stress such waiting causes in any outward display (other than bad temper), but my dreams tell a story. Anxious dreams, wake-up-screaming dreams. All have one theme in common — events that are out-of-control.

Clearly, I read too much fantasy. The other night, I dreamed my real self was murdered by killing my shadow wraith which was roaming somewhere far distant from my flesh and blood self. I remember being surprised: I didn’t know you could shoot a wraith and have the attached body die. Dream and learn, eh? That isn’t Freudian — that’s literary.

75-Ghost-NK-081

Last night was more mundane, closer to home. A friend of my daughter’s who seemed to have moved in (her friends never want to go home) realized her clothing was dirty, so she decided to wash it. By hand. Then leave the piles of soggy garments all over the house.

I was in the process of trying to corral the wet laundry before it destroyed the floors … and I woke up realizing, hey, it’s laundry day again.

Laundry

Caught as I am between chapters of my life, I find myself making strange (hilarious?) discoveries. Apparently when the plastic surgeon rebuilt my breasts (implants) following the double mastectomy a couple of years back, she used muscles as part of the construction. Factory-original breasts have no muscles. There are muscles on the chest wall and off to the sides, but real breasts are not designed for men to ogle but to feed babies. Milk production. Way back in the long-lost past, I had (for a few months) “working breasts.”

That was more than 45 years ago. Last night I discovered I can make my breasts do all kinds of things. I discovered those newly arranged muscles! Together and independently, the muscles work and since I’m healed from that surgery (finally, just in time for the next one), I can control them. Cool.

Fake breasts

This was a startling discovery. I stood in front of my mirror making my breasts dance and salute for quite a while. Then I came out of the bedroom and showed Garry who laughed, but for some reason, did not think making a video to post on YouTube (it might go viral!) of my new talent was a good idea. Spoil sport.

This is what happens when you are on a long intermission between life and life. You linger.

Of course, I’d make every attempt to linger anyhow. The single thing I really don’t want to end is my life. I want to live. Life is the ultimate event and I want to keep it going.

I’m lingering with enthusiasm and verve.

More Lingering:

  1. My pre-game Pre-Game | The Bohemian Rock Star’s “Untitled Project”
  2. Daily prompt: Linger | The Wandering Poet
  3. A Love Affair With Southern Italy | AS I PLEASE
  4. Home Sweet Home | Views Splash!
  5. Step by step | Le Drake Noir
  6. Daily Prompt: Linger | tnkerr-Writing Prompts and Practice
  7. Linger Longer… | Hope* the happy hugger
  8. Never fly solo | Perspectives on life, universe and everything
  9. If ever | Perspectives on life, universe and everything
  10. Love for lingering, drumming | Journey of a Culture Carrier
  11. Lingering longer | Sue’s Trifles
  12. The Trouble with Lingering | Wise Woman in Training
  13. Daily Prompt: Linger « cognitive reflection
  14. I see stars | littlegirlstory
  15. Linger At The Beach | Lisa’s Kansa Muse
  16. Lingering, all day today | sixty, single and surviving
  17. Linger | forgottenmeadows
  18. Not Wanting this Moment to End. Daily Prompt | Angela McCauley
  19. Linger | The Library Lady and Rosie Bear
  20. Daily Prompt: Linger | CHRONICLES OF AN ANGLO SWISS

A LITTLE BIT OF SUGAR

Daily Prompt: Pour Some Sugar on Me

I’m not a big sweet eater anymore. It has nothing to do with discipline or self-control. It just happened. Especially chocolate. I was a fanatic about chocolate, but these days, other flavors have more appeal.

I can’t eat a lot of sugar anyhow. My blood sugar and I made a deal. I lay off the heavy sugar fixes and it won’t make me sick. It’s pretty basic. I know if I eat more than a little of anything sugary, I will pay and I won’t like the terms. It’s enough to make me think twice.

dessert Island

I can eat a little, more in the morning. It sits better early (rather than late) in the day. I’m sure there’s a reason for that, but don’t know what it might be. In compensation, I spend an inordinate amount of time planning to bake. But I don’t. I also plan to buy sweeties but inevitably forget to put them in the cart. If I bake or buy, I eat and grow fat. Which brings me to the next issue.

I’m watching my weight. Mainly, I’m watching it rise. I know for a fact (popular diet mythology notwithstanding) plans and intentions don’t make one fat. You have to really eat the stuff. Sniffing it, being near it, looking at and longing for it — all free. Despite my best efforts, I’ve been putting on weight slowly but steadily for a few years, ever since the drugs I took following breast cancer killed my metabolism. After the surgery and the drugs, my body changed. I eat the same — same stuff, same amounts — as I did before. It kept me thin for a long time, but now, not.

96-OragnesHannaford_12

I made peace with my rounded self. I can’t eat much less. The injustice of it keeps hitting me. If I’m going to grow round anyhow, shouldn’t I get to have an orgiastic eating experience?

In lieu of other sweets, I eat fruit. With or without Splenda, depending on season and fruit. This time of year, the only good fruit we get is citrus. Grapefruit and oranges. I eat a lot of them. Fortunately, I love fruit. And vegetables.

My non-standard digestive system doesn’t like this stuff nearly as much as my mouth does, so I have to be careful. Moderation. I keep it down to two pieces of citrus and one order of veggies per day. That same picky system also doesn’t care much for carbs. It’s okay with modest quantities of rice and potatoes, is intolerant of pasta and bread. I can eat some. One slice of bread. A few forks of pasta. More gets dodgy.

Beverages? Nothing with sugar. Make me sick. Fast.

In self-defense, I’ve learned to enjoy a little bit of whatever I want. A tiny amount of jam on an English muffin. A dribble of syrup on a waffle. A half a cookie. A bite of cake. If I ate more, it wouldn’t taste better, right? And — I eat desserts ever so slowly. When everyone else has washed the dishes and gone off to watch TV or whatever, I’m still working my way through a dollop of pudding.

Our bodies are forever changing. This is Truth today, but who knows what it will be in a few weeks? Everything changes. If we aren’t dead, we are changing, metamorphosing into whatever we will be. I can handle it.

Well, I think I can. I am definitely going to try.

Pingbacks of the day:

  1. Not quite but almost “Limericky.” | thoughtsofrkh
  2. Addiction | Kate Murray
  3. Something To Remember & The Daily Prompt | The Jittery Goat
  4. Safest for Me | Daily Prompt: Pour Some Sugar on Me | likereadingontrains
  5. Daily Prompt: Pour Some Sugar on Me. And Salt at Another Time. | seikaiha’s blah-blah-blah
  6. DP Daily Prompt: Pour Some Sugar on Me | Sabethville
  7. Pour some sugar on me: Daily Prompt | ALIEN AURA’S BlOG: IT’LL BLOW YOUR MIND!
  8. Daily Prompt: Pour Some Sugar on Me | tnkerr-Writing Prompts and Practice
  9. Surprise pudding | Sue’s Trifles
  10. My Little Bag of Heaven! | B.Kaotic
  11. Daily Prompt: Pour Some Sugar on Me, 15.03.14 | Markie’s Daily Blog
  12. Blue Magic Can | The Bohemian Rock Star’s “Untitled Project”
  13. Innocence Insults My Intelligence | Bumblepuppies
  14. Daily Prompt: Pour Some Sugar on Me | trioldman
  15. #Making Donuts | It’s a wonderful F’N life
  16. A Greek Treat | Lifestyle | WANGSGARD
  17. Daily Prompt: Put Some Sugar On Me- Psychological Perspective of Disease | Journeyman
  18. Daily Prompt: Pour Some Sugar on Me | Awl and Scribe
  19. Daily Prompt: Being Sweet! | All Things Cute and Beautiful
  20. Pour Some Sugar on Me | Lisa’s Kansa Muse
  21. Pour Some Sugar on Me | Knowledge Addiction
  22. De-constructed Bounty… | Steve Says…
  23. AB + CC = D | mamangerie
  24. Here is to my mom’s honey buns sugaring it up in the grand old sky! « psychologistmimi
  25. An Ode to Frozen Yogurt | Never Stationary
  26. In Good Company | 4 The Sensitive
  27. Sweet, Sweet Sugar | Step Into My Head
  28. Saltine Cracker Bark | The Pinterested Parent
  29. sweet thing yummy yummy | eastelmhurst.a.go.go
  30. Daily Prompt: Pour Some Sugar on Me | My Extraordinary Everyday Life
  31. Food Food Food | Life Confusions
  32. Delivered By Ferry | Exploratorius
  33. The Sweetest Taste | Finale to an Entrance
  34. Pour Some Sugar on Me | dandelionsinwind
  35. Goodbye Sugar | Under the Monkey Tree
  36. Daily Prompt: Pour Some Sugar Over Me | CHRONICLES OF AN ANGLO SWISS

UPDATE! ANOTHER DAY, ANOTHER DELAY

There are two classic ways to jinx yourself:

  1. Announce what you will never, ever do.
  2. Ask “What else could possibly go wrong?”

Of all the things I said I would never do, I never moved back home. Given the nature of my relationship with my father, this should be no surprise. My mother died more than 30 years ago and she was home. I think I would have slept in a doorway before staying with my father.

As for all the other things I was sure I would never do? I paid the high prices I said I’d never pay. I’ve had the surgeries I said I’d refuse. I’ve put up with behavior from loved ones I said I’d never tolerate, but they’ve put up with a large amount of crap from me. Fair is fair.

WHAT COULD POSSIBLY GO WRONG

These days, I modify all those “never” statements with “I hope I never have to …” because whenever I use the “never” word, I wind up feeling like a complete fool when I do exactly the thing I said I’d never do.

Words taste fine on the way out, but somehow, eating them is not so yummy. Moreover, saying “never” is daring Fate to nail your butt.

It’s the same as saying “What else could go wrong?” The very instant those words pass your lips, you can be sure you are going to get an answer to that question. And you are not going to like it.

So now, let’s move on to the news of the day. This is getting a bit repetitive and mildly embarrassing.

My surgery has been postponed again. Why? Because Beth Israel has a brilliant cardiac unit. And I guess March is heart failure month. They are backed up with emergencies. They have patients coming in on Medivac flights from California and other points south and west. Big emergencies that require multiple surgeons and take all day. And all the operating rooms are booked.

Expect-Delays-sign

I have been promised that I am “on” for Wednesday March 19th for the catheterization and Thursday March 20th for surgery. My surgeon personally promised I wouldn’t get bumped again. Except I know that if there are more emergencies they will take the emergencies and bump me again. And if I were one of those emergencies, I would want them to bump someone else and save my life. That’s what these guys do and that’s what they should do. It’s the price one pays for going to the premier cardiac hospital in the country. They take the cases no one else can handle.

So I’m back on hold. It’s a total pain in the butt and I can’t complain. But I want to complain. So okay. I’m complaining. I can’t make plans. I can’t go anywhere or do anything. All I can do is wait.

Funny about that because the one thing I have never been good at is waiting. I am impatient, permanently in a hurry. Perhaps this too is Karmic payback. I am learning that sometimes, I have to wait, whether I like it or not.

I’ll tell you one of the more interesting changes resulting from all this delay? Instead of dreading the surgery, I’m eager to get it done. Just so it’ll be over and I can start the business of recovery. I never would have expected this … but never say never, right?

RELATED POST (And where I got the idea how to write this post):

Never Say Never | Rosie Smartie Pants