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.