EIGHT YEARS AND STILL IN REMISSION (YAY) – Marilyn Armstrong

Eight years ago today I had a bilateral mastectomy for cancer. I had malignant tumors in both breasts. Two different kinds of cancer. Which, I was told, is extremely rare. One in a million.

I’m always that one in a million.

The much better news was that both tumors were small and non-aggressive, as cancer goes. I also had the wits to find the best cancer doctor in Boston and the only plastic surgeon who was sure she could manage to create breasts for me. I’d had five (six?) previous abdominal surgeries, so there wasn’t any undamaged skin for her to work with … so she literally salvaged the skin from my breasts and reused it over the implants.

Recently – Photo: Garry Armstrong

I had four surgeons working on me at the same time because there were two breasts to be removed, followed by two “new ones” to be implanted. I was a total mess when I came out of surgery … but I had breasts. I didn’t have to go through the horrible stage where suddenly, you’re a woman with no breasts. I remember how much my mother hated losing first one, then the other breast. How they made her feel “unwomanly.”

It’s a surgery that changes you.

Mind you I had been told conclusively by at least three previous plastic surgeons that it was impossible. It couldn’t be done. That was when a friend (a doctor type friend) stepped in and introduced me to the good surgeons. The head honcho and her lead plastic surgeon. So I got them and their top assistants because they didn’t want to extend the surgery any longer than necessary and this way, they could work on both sides of me at the same time.

And that’s what they did.

That surgery changed me in a lot of ways I haven’t even begun to address despite the eight years that have passed. The heart surgery — a mere three years later — didn’t change me as much as losing both breasts.

It’s hard to explain how important breasts are to a woman. It doesn’t make any logical sense. Unless you are nursing — and I was way past the nursing phase of my life — they are secondary sexual characteristics. Yet from early on, one’s breasts define femininity. Size, shape, all of that stuff. The fake ones look more or less normal under clothing … but they don’t feel real.

Also, I have no nipples. I could have gotten pretend nipples, but it would have involved more surgery and more weeks of recovery. I realized fake nipples weren’t going to make me feel more female. They would feel as fake as the implanted breasts.

Make no mistake: I’m glad to have the fake breasts. I can look in the mirror and see a woman even though she has significant replacement parts.

I have to wonder about women who have breast surgery for “cosmetic” purposes. This is serious surgery. To do it voluntarily?

So, eight years later, I’m alive. My body changed enormously after that surgery. I went from being extremely thin to quite plump, probably because of the drugs they kept giving me to suppress production of estrogen. The drugs made me terribly sick and eventually, the oncologist suggested I stop taking them, that they were making me miserable and I had no quality of life left. I asked what percentage of difference not taking the drugs would make … and he said “less than 10%.”

I stopped taking them.

I still wonder if those drugs had something to do with how my heart disintegrated immediately thereafter. I can’t prove it, but still … those were some powerful drugs.

Climb every mountain – Photo: Ben Taylor

Meanwhile, it is eight years and there’s no sign of anything (new) wrong. It doesn’t mean I can’t get cancer somewhere else, mind you. It just takes one random floating cell to take root somewhere, but so far, so good.

Where cancer is concerned, that’s as good as any of us can ever say. You are never cured … just remitted. For now.

WHAT’S A DAY WITHOUT A CHALLENGE? – Marilyn Armstrong

RDP #63 – CHALLENGE


Lately, every day is challenging. Life is a challenge.

Yesterday’s challenge was getting everything that needed doing, done. My son doesn’t have a lot of time off from work. It was the first of the month, which meant I had some money in the account. The freezer was heading towards empty and Garry is not allowed to haul groceries. This is not one of the things he sees as a challenge, so he had no problems with me taking care of it.

Testing, testing …

I want to make it clear that he is entirely capable of doing anything he wants to do, albeit rather more slowly than in earlier years. The hardest parts of my experience with Garry’s surgery is preventing him from exercising or doing anything strenuous. And NOT blowing his nose.

He is an exercise junkie. Since basic training in the Marine Corps, he needs that exercise and not doing it makes him feel weird and uncomfortable. I get that.

Right now, he can’t. No heavy living, no heavy hauling. He has one month — four weeks — when he can’t lift, haul — or blow his nose. He forgets about the nose blowing, so every time he does it (instinct wins over doctor’s notes), he feels as if his head will explode. That’s a hard-to-ignore reminder. Exercise is a different problem.

Garry digging out

We had it out the other night and I finally had to say: “This is your body, your ears. Your hearing. You’ve waited a lifetime for this miracle. Are you going to blow it to by secretly doing push-ups?” For me, this is a no-brainer. Obviously, we are in different head spaces on this.

He thinks I’m rejecting him. His male translation of my comments is that I don’t care what happens to him, but the truth is 180 degrees in the other direction. The idea of actually being able to have a conversation I don’t need to shout from three-inches away from his left ear makes my heart race.

That being said, I can’t follow him constantly reminding him of what he needs to do or more to the point, not do. Sort of like the ancient court jester and the king. I probably need different clothing and a bladder.

Garry reads the doctor’s notes every morning when he gets up, to remind himself of the instructions. I love him madly and want this to work for him, but he has to want it at least as much as I do. In the end, it’s not my body, not my issue.

It’s a bigger challenge for him than it would be for me. But for heaven’s sake — IT’S JUST FOUR WEEKS. His body will not disintegrate from lack of exercise after one month of skipping morning exercises. He can go back to two hundred push-ups before August is over. Yes, he really does 200 push-ups every morning along with other exercises.

That doesn’t seem like a huge price to pay for the privilege of hearing for the first time in his life. He can walk, do light work around the house — you know, the stuff I usually do — and watch as many baseball games as he can fit in a given day. And maybe fit in a movie or three. He could also take the camera and take a few hundred pictures. We could stroll in the park.

A challenge, I have concluded, is different for each of us. My biggest challenge is getting out of bed, then actually walking. The rest of my day is easier, but I have to get past that challenge.

Garry is far more complicated.

GARRY’S COCHLEAR IMPLANT IS TODAY – Marilyn Armstrong

By the time you read this, we will be at the hospital and quite probably surgery will be underway or even finished. I guess it depends on what time zone you’re in.

This is exciting stuff. Nervous-making, too. It will be at least 5 weeks until he is out of bandages and fitted with all the technology.

Remi, Garry, Tom, and sunshine

After that, it will take a few more weeks while we wait for the magic to work. The technology doesn’t produce “natural” sound. It is essentially electronic, yet the brain converts it into “real” sound. Or, more to the point, makes it sound like whatever sound we recognize as “natural.”

How it does the brain do that? No one really knows for sure. It just does it. Why? That’s another thing we don’t know. It’s a little miracle in its own right.

What we know for sure is that it happens. At some point during the first few months, the brain converts those “electric” impulses into what it “knows” as “real” (normal) sound. For some people, it happens very quickly. For others, it takes a longer and there’s no predicting which way it will go. The important thing is understanding that it will occur and when it does, its magic time.

For Garry, it has been a lifetime waiting to hear. It’s also going to mean some big changes around here. For one thing, I’m going to have to stop muttering under my breath. For the first time in our lives together, he will be able to hear what I’m really saying.

WELCOME! LET US MAKE THIS EVENT STRESS FREE! – Marilyn Armstrong

RDP # 49 – WELCOME


Nurse: Welcome to the University of Massachusetts hospital! We are here to make your experience as comfortable as possible.

We’d like to get started by asking you to give us the identical information we required from you on your previous pre-op visit. Yes, I know, it’s in the computer, but we need to see it. Again. We feel doing everything at least three times will lower your stress levels and help us avoid working on the wrong piece of you.

Just kidding. That never happens.

I know we asked you to not bring your wallets or valuables. We apologize for that because we really meant was don’t FORGET to bring all your paperwork and of course, your wallet. So now, would you please give us your driver’s license, medical card, and if possible, a third identification displaying facial recognition?

Entry

No, I’m sorry. Your wife assuring me that this is you would not be “official” enough. If you didn’t bring the information we asked you not to bring, don’t worry. We’ll reschedule the whole procedure in another few months.

We’re sorry if we got in touch with you so late yesterday you had trouble arranging a ride to and from the hospital, but as we like to put it, “that’s not our problem.” We do the medical part. You work out the rest.

Nurse: Now, Mr. (pause) (looks at paper) Mr. Armstrong?

Me: “Speak up. He can’t hear you.”

Nurse: We’d like to see all your medical papers, listing all the medications you currently take, have taken in the past, or might take in the future. Also, your medical card and another form of ID that includes a picture. A driver’s license perhaps?

You’re trying to explain that you were merely following our printed directions? Like on that paper you are waving in the air?

We didn’t really mean it that way. We omitted a word. We really meant to say you should NOT FORGET to bring all your paperwork with you.

Hospitals get so busy, you know?

TO HEAR: THE OBJECT OF THE EXERCISE – Marilyn Armstrong

THE OBJECT OF THE EXERCISE: TO HEAR

Yesterday, I got a call from the Audiology Department of UMass. She said she wanted to give me the rest of Garry’s official audiological follow-up appointments — as opposed to the surgical follow-ups. I had already gotten the ones for pre-op and Surgery, plus surgical follow-up. Lucky for both of us, she didn’t expect to talk to Garry personally. This is the only medical place that realized he can’t talk on the phone.

As a deaf person, he can’t chat on the phone. That’s what the surgery is all about. Every other time I talk to a medical person other than our family guy, they insist on talking to Garry. I hand him the phone, shout “JUST SAY YES!” Which he does and the conversation can progress. They totally fail to have a grip on the “he can’t hear” issue. Either that or they think if they yell louder into the mouthpiece, that will fix it.

No more of these!

The cochlear implant is a surgical miracle and a lot of technological fine-tuning. Post surgery, he has a date for “turning on the equipment,” three more tune-ups, with a final official get-together after six months. If he needs more help or another type of help, like speech therapy, we can add those.

It’s just as well we aren’t trying to do this in Boston. We’d never survive the traffic.

The object of all of this? To bring Garry back into the world. To make him part of the conversation. To have him in it and not have to round it up and tell him about it later. To take him out of the enclosed space in which he now lives and bring him into the bigger world — the way he was. The way I remember him.

All those objects they will put in his ear and on them? These will change him. I have a feeling they will change him more than he expects. Maybe even more than I expect.

Tune in! We’ll be playing this one by ear.

A PAIN IN THE NECK

When Pain Decides, by Rich Paschall


There are many powerful motivators in life.  Money is at the top of some lists.  It certainly seems to be the main motivation for many leaders of corporations and governments.  Doing good, rather than doing evil or even just doing nothing, inspires people to do good works that will benefit their community and their world, however large that may be.  Fear can also be a motivator to get you to do things or to avoid people, places, things .  What motivates you to act in a certain way?

Pain is clearly a strong motivator.  People will generally avoid things that cause pain.  At least, they will when they know better.  My earliest memory involves broken glass.  I was barely more than a toddler when glass broke on the floor and my father and grandfather were yelling at me to stay put.  This of course frightened me and I ran across the floor to one of them.  I was barefoot at the time.  The next thing I knew one of them was carrying me down to the doctor’s office, conveniently on the same street.  The other hurried along side.  I guess the good doctor picked a little glass out of me and sent me home.  I knew never to run through broken glass again, at least not barefoot.

Sometimes we learn about pain the hard way.  The oven is hot. The radiator is hot.  The campfire is hot.  Heavy objects will hurt if they fall on us.  Knives will cut.  Scissors will cut.  Razor blades are for an adult to carefully handle.  Falling off your bike is bad. Falling down stairs is bad.  Falling on the ice is bad.  Being hit by a car…  Well, some things are very bad.

All of these tragedies and possible tragedies motivate us to lead a safer life.  No matter how well our parents try to “child-proof” the house, there are still painful lessons to be learned.  From them, we discover how to stay safe and avoid pain.

Sometimes pain may keep you off your bike, off the ski slope or off the golf course.  The aches and pains of age may stop you from doing things you used to love.  You may see the roller coaster at Great America, but decide your back will not take such a jolt.  A sore knee may keep you from hiking or a headache may keep you out of the sun.  You may be motivated to keep away from many activities.

No matter how carefully you live your life, however, other factors may intrude that cause pain and painful decisions.   A whole encyclopedia of maladies may force you into the doctor’s office in search of relief from pain.  Have you ever heard yourself ask the doctor to give you something for the pain?

There are plenty of “some things” to be had.  I know. I have many of them on hand.

If you consider the health of your family and friends over the years, you may see a lot of pain and suffering.  Sometimes people’s lives become an exercise in treating pain.  Some doctors are wary of treating the pain, which is a symptom, rather than the problem.  Getting something for the pain and going home is not often a good route to take.

In  the middle of last year, neck pain and arm and shoulder numbness caused me to go to the doctor.  My manager in the freight forwarding world was concerned I was having a stroke.  I assured him I was just having a lot of pain.  A stroke will cause numbness on one side and usually a severe headache as well.  Know the warning signs of stroke.  It is a different kind of pain.

Without going through all of the steps and studies along the way, I can say I ended up at a pain doctor who realized there was more than a pain in the neck.  He treated that pain but also caused for a lower back problem to be found.  Rather than deal with the neck problem, I had an operation on the lower back which alleviated pain and numbness, but not the original problem.

Why did I avoid the original problem?  Because the back surgery sounded like it could be solved with a minimally invasive procedure while the neck surgery sounded scary and painful.  It was pain that caused me to opt for one surgery over what was actually a bigger problem.

While I was looking into options for the neck, I finally picked a neurosurgeon and scheduled surgery.  Why would I let someone cut into my neck because of a couple herniated discs?  What motivates me to have the procedure I had been avoiding?

When I was much younger I had a procedure that caused for a spinal injection.  When I awoke, I found a weird feeling in the spine and numbness from the waist down.  It went away in a short time, but the back was sore and I swore then, I would never let anyone touch my spine again.  What happened to change that?  Pain.

The surgery I avoided became inevitable.  Pain made the decision for me.  It is time to go forward with an attempt to replace a couple herniated discs and put C5 back in place.  I absolutely do not want to do it.  A larger motivating factor came into play.

This will take me away from my computer for a day or two or three.  Hopefully I will be able to answers any comments in a timely fashion.  If not, I guess you will know what motivating factor kept me away from my appointed rounds.

SHOCKED

SHOCKED


On the table. Recently cut into pieces and then stitched back up, I was officially in shock. Well, what do they expect is going to happen? They take all the critical parts of your body out, repair them, stick them back in. Nothing is working and everything hurts and I do mean everything, including parts that you weren’t aware were even in your body.

Doctors are incapable of admitting they cause actual pain.

“Pain” is what you felt before they got you on the table and repair you. Post-surgery, it’s called “surgical discomfort,” a thing that often requires massive amounts of ingested drugs, but is not “real” pain because they caused it.

So I was in shock, which happens when you are hit by a tsunami of post-surgical discomfort. I was also not entirely awake, not in any sense of the word which I understand. I’m told my dark side rose from my recumbent body and I tried to take down the nurse. With my fists.

The better part of valor parlayed and voted to put me back into a chemically induced coma.

Yup. Shock.

It sure was.

JUST BURY ME NOW

Oh Bury Me Now!


We were watching West Wing last night. Watching it again because I need a reminder that government doesn’t have to be as horrible as it currently is. I am pretending that the show — West Wing — is the real presidency and everything else is fake. I can’t do it all the time. Sometimes, news bursts into my bubble and I try to deal with it, but since I am at a total loss as to what is going on in my “real” world, I don’t get very far. Last night’s episode was the one in which the President and Josh get shot by one of our many crazy people with guns. Josh is much more seriously injured than the president and spends many hours in surgery.

After which, he spends many more hours unconscious.

The right way to be

Anyone who has been seriously ill following surgery and was unconscious for a long time — medically induced or otherwise — knows what I mean when I talk about waking up. There comes that point when they decide you’ve slept long enough and it’s time for you to awaken.  If you don’t know, it isn’t like you don’t hurt while you are unconscious. You hurt plenty, but it beats out how you are going to feel when you are actually awake and so-to-speak conscious. You lie there and you can hear the nurse or doctor … or your family and friends … asking, begging, pleading with you to wake up. I remember clearly saying “NO!” and drifting away. I’ve been sick enough for long enough to know — they are lying to me.

“It’s okay to wake up. We’ve don’t the surgery and you’re better.”

Liar, liar, pants on fire. You’ve done the surgery and when I wake up, it’s going to be pure, unmitigated hell. If I hurt now, in my semi or unconscious state, just think how terrible I will feel when I open my eyes and am forced to think.

“NO!” I said again, more forcefully this time. I knew I was not going to feel better awake. Absolutely no way was that going to be an improvement to the several days I’d passed in a stupor.

“Don’t you want to talk to your husband?”

“NO.”

“How about your friend.”

“NO!”

“Well, you don’t have a choice. It’s time to wake up.”

The expression “just bury me now” springs to mind. You know with 100% certainty that nothing they do will keep you from feeling the level of terrible you are going to feel. In fact, as they keep digging you out of your unconsciousness, you really feel how bad every piece of your body feels. It’s ugly.

I finally opened one eye. Then the other. “Where,” I asked, “Are my glasses?” Because I couldn’t see anything except a white blurriness. If I was going to be mortally ill, I wanted edges on my reality. I don’t know why, frankly. The edges didn’t make anything better. It turns out they woke me up shortly after surgery and I tried to throttle the nurse, so they put me back under for a couple of days. Apparently, I was seriously pissed off.

They didn’t bury me. I was awake again. And, ironically, it was the last sleep I was going to get in that hospital because from the first minute your eyes are open, they wake you up every 45 minutes for a pill, a shot, a blood draw, the change of transfusion bag. To add something painful to the stuff that already hurts, or jiggle the hurting stuff around so that everything feels worse.

Oh bury me now. Please.

They were explaining that they had to do one more surgery because my heart was refusing to beat. “Don’t worry Mrs. Armstrong. It’s a minor procedure.” Relative to what?

“Really? then let’s not do it.”

“We have to. Your heart won’t beat on its own and you can’t walk around …”

Walk around? I’m going to walk around?

“With a wired pacemaker on your chest.”

Why not? Is someone going to take my picture? Am I going to be the cover girl on “Repaired Hearts Monthly”?

But I woke up and they didn’t bury me. And remarkably, after a year or two, I started feeling better. But if you are in that bed and you are unconscious … and they are telling you the worst is over and it’s time to wake up? Don’t believe them. It’s a bald-faced lie.

MY BIBLE BUMP – THE CYST ON MY WRIST, REDUX

I’ve got a bible cyst (also known as a bible bump) on my left wrist. No kidding. It’s not quite as funny as it sounds.

It has been a nuisance for a while. Since the last round of life and death heart surgery, it has moved down the priority list from a serious problem to a minor aggravation. Everything is relative.

It’s been on my wrist for years. It’s annoying. It came and went (typical behavior for cysts) and has made it impossible to wear a watch. Hardly a medical emergency.

This is a ganglion cyst on the inner right wri...

One day, about two years ago, it blew up. Got huge. Too much typing? It hurt when I moved the wrist.

I talked to the doctor about it. He thought I should address the cyst and the arthritis in my hands at the same time.

Before that happened, the cyst deflated — and my heart blew up. It’s two years later. A lot of heart surgery, but I’ve still got the cyst, which still comes and goes. Sometimes it hurts, other times it itches. I live with it. I have bigger things on my plate.

What makes it a Bible Cyst? 

Ganglion cysts, typically located on wrists (though sometimes on knees, fingers or toes) are known as “bible cysts,” alternatively as  “Gideon’s disease.”

Why? Glad you asked. In the good old days, the treatment for ganglion cysts was to give them a hard whack with a heavy book, breaking the cyst and draining it. Since the bible was usually the heaviest book in the house (often the only book), though I’ve heard a full-size dictionary, Oxford or Webster, will do the job just fine. You see the connection, right?

Somehow, getting whacked on the cyst with a heavy book seems a solution I’d rather skip.

Ironically, the old “whack the cyst with the bible” apparently works every bit as well as any modern surgery. Better. Cysts thus whacked rarely return. I suspect the whackee would never tell anyone if it did recur. One bible whacking is probably enough for any wrist.

It gives a new meaning to the expression “bible thumper”!

LITTLE WIRES – A DRAMA-FREE SOLUTION

selfie in gray teeYesterday, out popped two little wires that have been working their way through the healing scar of my pacemaker.

The first time this happened, it was one wire poking through next to the much bigger scar down the middle of my sternum. I pulled it out with a pair of tweezers. Quite a long piece. Very thin. Sharp. The moment I pulled it out, it stopped bothering me. The hole closed instantly and healed up in hours. Crisis averted.

Then everyone yelled at me for doing something stupid. I tried to explain the wire was loose and came out far easier than an eyebrow hair. I didn’t have to tug, just guide it out. It wasn’t attached to anything. Just a stray wire left behind by surgeons.

Now, I had to make a choice about the new pair of wires. These were very close to the pacemaker. For obvious reasons, I didn’t want to find myself with my heart in my hand.

On the other hand, I didn’t feel like making an appointment with a surgeon — requiring Garry to defer his trip to New York — then driving 140 miles, round trip. All of this so a surgeon can take a pair of tweezers (just like mine) and pull out the wires.

Or worse, decide to open me up just to see what’s going on. I’ve had enough of that, so no, thanks.

Screw it, says I.

I picked up my trusty tweezers, grabbed the wire and gently removed it. No pressure. It was less than a quarter of an inch long. The second piece was even smaller.

My pacemaker is still in place. My heart continues to beat. Those spiky, itchy, annoying little wires are gone.

Call me stupid if you want, but I can’t bring myself to make an epic drama out of a tiny piece of wire.

ITCH!!

For everything, there is a season. This is my season to itch.

First, you wake up from surgery in screaming agony and after a while, it subsides. Little by little, it goes from agony to misery. The misery lasts months, though if you analyze how you feel, you recognize under the pain layer, you’re feeling better.

Until the itching starts.

itchingFirst, it’s a tickle. A couple of days later, the prickly feeling becomes a torrent of itching. Which you dare not scratch lest you open up one of your incisions.

I have seasonal dermatitis too. It kicks in every spring and fall. It’s not a disease, so there’s no cure and by itself it can cause frenzied itching. And hey, it’s spring, sort of. A bit cold and rainy, but according to the calendar, it is spring. So my dermatitis has clicked “on.” Add that to the healing incisions and it’s a perfect storm of sensation.

You can get drugs to dull pain. Sometimes you can get drugs to make pain go away entirely for a while.

Nothing makes itching stop.

It’s a sign of healing they say. Me? I hate it.

I’LL BE BACK

Daily Prompt: Never Surrender

Like a lichen on a rock, I cling. Like the sun, I rise. Like the earth, I renew.

I’ll be back.

DawnLateWinter09-300-72

Friday’s the big day, though I’ll be in the hospital as of Thursday for cardiac catheterization. Hopefully they won’t find anymore stuff that needs repairing. Garry will try to send updates, but he’s going to be busy and tired, so be gentle with him. This is hard for him too.

Stubbornly, determinedly, I’ll come back. Until then, I will miss you.

Other entries:

  1. Daily Prompt: Never Surrender- Between Resilience and Stubbroness | Journeyman
  2. The Trial, Not For the Weak of Faint of Heart: Part 1 | jlaneb
  3. No surrender on Mental Illness | ALIEN AURA’S BlOG: IT’LL BLOW YOUR MIND!
  4. There are just some things I like a certain way. The right way. | thoughtsofrkh
  5. Stubborn as a Mule! | meanderedwanderings
  6. Pardon me for everything I’m about to say | Attempted Human Relations and Self
  7. Welcome to the jungle | The verbal hedge
  8. Daily Prompt: Never Surrender | My Extraordinary Everyday Life
  9. Health Goals, Easy Going Or Stubborn? | Because It Calms My Nerves:
  10. The Conundrum | Each Feather, A Freedom
  11. Java, Joe, Carbon Remover, Plasma | Exploratorius
  12. Tweet, Tweet, Twitterfiction | My Little Avalon
  13. Steadfast in my integrity: I am my mother’s daughter « psychologistmimi
  14. How Do I Get My Son To Go To School | A mom’s blog
  15. I am not bossy, I AM the boss | IvyMosquito
  16. Daily Prompt: Never Surrender | Finding Life
  17. Stubborn Love | peacefulblessedstar
  18. Daily Prompt: Never Surrender | Life is great
  19. Stubborn Dutch | Lisa’s Kansa Muse
  20. Daily Prompt: Never Surrender | Chronicles of an Anglo Swiss

YET ANOTHER UPDATE

Surgery has been delayed. Garry got pneumonia and I got a nasty cold. Apparently coughing, sneezing and heart surgery don’t go well together. Surgery has been rescheduled for March 14th when presumably Garry will not have pneumonia and I will have stopped sneezing and coughing.

I’m not exactly eager for surgery, but I am eager to get this done. I want to get on with living. Everything has been on hold for what feels like forever.

I’m frustrated with waiting and this is not the kind of waiting in which one can relax and forget about what’s coming.

So, that’s the story. I’m okay, getting over my case of “what’s going around.” Garry is taking antibiotics and in theory should be better soon. He is certainly restless enough … and we are running out of groceries. Tomorrow, he will emerge from the house one way or the other. It’s time.

THE HEART SURGERY UPDATE

The heart surgery I’ve been anticipating is no longer an abstract “someday.” It’s now got a date and a name. A place, a surgeon. A schedule.

I could have done it as early as next week but I’ve got a lot of things to take care of. Taxes to file, bills to schedule, maybe a few stories to write. I need to settle my brain because I’m not in a good place. Much too scared to think straight.

Heart broken

I’m not so much afraid of dying, though that is certainly a possibility. There’s nothing minor about this set of procedures. Septal myectomy and mitral valve repair, with a cardiac catheterization before the surgeries, just for fun. I really do know how to have a good time.

Starting March 5th, I’ll be in at Beth Israel in Brooklline. First in the ICCU, then the regular cardiac ward for a week or two. Then back home for at least 10 to 12 weeks. No cardiac rehab because I can’t afford it. There’s a $50 per day deductible and essentially, no one I know can afford it. The hospitals and surgeons are well aware of this and don’t require rehab. So I’ll go home.

Assuming the surgery goes well and there are no complications, I should be able to write fairly soon after I’m home. It won’t mean I’m recovered, only that writing is the one thing I can (usually) do even when I’m not exactly up to snuff.

There’s a little more than a month and I hope it’s a good month. I hope all goes well and this surgery that scares the bejeezus out of me will ultimately improve my life. I live — simultaneously — in hope and fear.

Life is like that.

HEART AND SOUL

I went to the cardiac surgeon the other day. I explained about the money problem. He apparently understood. Wow. A rational, friendly guy. With whom I had a normal conversation. I’m not used to that. I kept waiting for hostilities to break out, but they didn’t.

We put together a sort of plan. I need to reorganize my health insurance so I can afford the surgery. This means it will have to be after the turn of the year. In any case, it will take me that long to figure out how to get through to Medicare while the government is closed for business. I’m trying to stay calm, but I’m screaming inside.

The doctor said since I’ve made it this far — and I can breathe and am not all swollen with water retention — I’m likely survive another few months. How comforting is that?

BethIsrael-EastCampus

Meanwhile, I have nightly dreams I’m drowning in my sleep and can’t breathe. It’s my fear throttling me. Even though I’m essentially asymptomatic, it doesn’t make the fear go away. I control while I’m conscious, but at night, those demons are fast.

Diagram of the human heart 1. Superior Vena Ca...

The good doctor found it puzzling. I should be symptomatic as Hell. Go figure, right? My mitral valve is barely working and the aortic valve is 75% blocked by an over-developed muscle in the left ventricle. Because the mitral valve is not working, the muscle has had to work extra hard — apparently for some time — to move blood around. Which has made it grow big enough to block the aortic valve. In addition to replacing the mitral valve, they have to do a little creative slice and dice on that muscle. The fun never stops.

The lack of symptoms had the doctor looking at me funny. He kept checking for signs of swelling in my ankles and wrists. There wasn’t any. “You sure you aren’t taking medication?”

“Just hydrochlorothiazide … 25 mg. Standard dose … been taking it for years.”

“No Lasix?”

“No. I have a recliner. I keep my feet up. You know, about a year ago, I was having a really big problem with swollen ankles. I looked like I had elephant legs. Then it went away.”

“Just … went away?”

“Yeah. Just went away.”

My Surgeon who isn't too busy to see me.

My Surgeon. He isn’t too busy to see me.

“That’s strange. Symptoms don’t usually just … go away. Not without medication. And you’ve seen your cardiologist?”

“No. My cardiologist is too busy to see me until next February.”

“Right. I forgot. You have a phantom cardiologist.”

“Yeah. He seems to be the only game in town, so to speak and he’s a very busy man. So I haven’t seen a cardiologist at all. Just you. And a nurse practitioner. Who didn’t mention the whole thing with the aortic valve. I think she was 12. Barely in puberty.”

Laughter. Not guffaws. More like amicable chuckles.

“Well, when you get your insurance straightened out, we’ll get you scheduled. Get your teeth taken care of in the meantime.”

“Will do. And thanks.”

Maybe I don’t need heart valves? Perhaps I could skip this whole thing? Ah … ephemeral dreams of improved health. I dream of surgery not done with my life nonetheless lived.

Daily Prompt: Celebrate Good Times – Le Chaim!

You mean … I don’t need a new mitral valve? No major surgery?

I can just go home? It was all a mistake?

Are you sure?

I mean … this isn’t another mistake? I’m not going to die of heart failure if I don’t get major repairs done on the central pump?

Wow. I think I need to sit down and catch my breath. Ha ha, very funny. I feel like I’ve just been given a reprieve from a life sentence …

slice of lime

I don’t even know what to do with myself. I’m going to drink this tall cold glass of sparkly water, then I’m going to start hugging every single person I know and not leave out any of the dogs, cats or horses …and then I’m going to laugh for a full week. And after that, sleep. Really sleep.

Le Chaim!

Note: This is a fantasy. It’s not true (oh how I wish it was). I still need the surgery.