Too much wit

I outwitted myself. I was trying to tell the world, without being totally depressing, I’ve got some issues with my heart and am not in a good place, physically or emotionally. I’ve had a great deal of surgery, from a double mastectomy less than two years ago, to multiple redesigns of my digestive system, to remodeling of my spine … with varying degrees of success. I’m a mass of scars — literal, not figurative — and now, I seem to need a new mitral valve and who knows what else.

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I don’t feel well and I’m having a hard time being witty, clever, and frankly — right now — writing at all.

So I apologize for trying to set my own issues subtly in a post about A-Rod. No one even noticed what I said I guess. Regardless, I’m having trouble keeping up with this. I’m having trouble breathing. Walking. And given one thing and another, thinking. I’m confused, frightened, and not sure what I am going to do.

For now, I need to drink coffee and see if I can make my brain function. I feel like my head is stuffed with kapok.

Connecting The Dots

Yesterday, the hunt for the Boston Marathon bombers ended with the death of one and the capture of the other. Because the two young men have Chechnyan “roots” there’s a lot of assuming going on. They must be Muslims. They must hate America. They must be part of an international conspiracy.

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Call me whatever you want, I would like to see some actual evidence before I decide what all of this means.

Does the ethnicity of the brothers have anything to do with their insane murder spree? Or is their ethnicity irrelevant and their motives stem from a far more personal cause, like the voices in their heads, drugs, or some other yet-to-be-identified source?

Thirty years ago, I had recurring cramps in my gut so awful that they made me unable to breathe. They lasted from a couple of minutes to half an hour or more. Anyone seeing me in the throes of these cramps would be seriously alarmed. I wound up in the hospital several times because it mimicked a heart attack exceptionally well.

The third time I was hospitalized, they wouldn’t let me go until they found a cause. After a lot of testing, they found stones in my gall bladder. “Aha!” they cried and removed the offending organ. A week after I came home, the cramps were back. It turns out I get gastrointestinal spasms. Cause? Unknown. Cure? None. Relief? Nitro-glycerin, the same stuff they use for heart spasms (angina). They looked for a cause. They found something. They assumed it was the cause. It wasn’t, but it was so logical. And who needs a gall bladder anyhow?

I’ve been guilty of connecting apparently related events because it seemed logical, obvious. Two events occurred almost simultaneously. Ergo, the events must be related; event A must be the cause of event B. Unfortunately, there was no relationship and the result of assuming a connection where there was none was devastating.

The essential different between reality and fiction is that fiction is all about cause and effect. There are no coincidences. In literature, television, movies, everything has a cause and nothing is coincidental. In real life, many things happen for no discernible reason. And there are plenty of coincidences.

It’s in our nature to look for reasons, to look for cause and effect. We want things to make sense. The idea of genuinely random events is terrifying. Religion is one of the ways we make sense out of chaos in our lives. It doesn’t make sense? God must know why it happened even though we can’t see it. Maybe He does. Then again, maybe not. But regardless, we will try to make sense, to connect dots even when we have to create dots to connect.

I don’t have answers. I have a lot of questions and I hope we get answers. But I won’t assume I know without any solid information. I’m glad they got one of the kids alive and I hope he stays alive long enough to talk.

Ouch!

I don’t want this to sound as if I think I’m special because I deal with pain. I realize I’ve got plenty of company. It’s just that sometimes, I feel like I’m in an over-crowded lifeboat. Sinking.

There a central irony to this story, so I’ll start with the irony and go from there.

Parents, school advisors, well-meaning friends and family are forever urging kids to get out and get physical. Join a team. Take up a sport. Get some fresh air. Exercise. It’s good for you, right?

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It is good for you. Mostly. But. Youthful athletic activity is often the start of a lifetime of pain. How many young men destroy their knees playing football? How many girls dislocate their spines in gymnastics? How many head injuries happen during little league baseball games? How many broken backs are the result of falling off horses? It’s not rare or unusual.

These days, everyone knows about the dangers, but it doesn’t stop kids from playing or parents from encouraging their involvement. Safety equipment is available, but injuries happen anyhow. Active sports are dangerous. It’s a fact. I’m not suggesting anyone stop playing sports. Life is meant to be lived, risks and all.

The irony is that sports are good for you if you don’t get hurt. If the helmet keeps the baseball from braining you. If getting tackled doesn’t tear the ligaments and tendons in your knees. If you don’t break your ankle coming down from a jump shot. If you ride well, don’t fall and land on your butt … or head.

For me, it was horses. I love horses. I love riding. I didn’t take lessons. I just got on and rode. I fell a few times. It looks funny when you land on your butt. Everyone laughs as you get up and limp back to your mount. You’re young. You suck it up.

Ignoring pain isn’t necessarily good. Pain can mean something is wrong. I dislocated my spine. Repeatedly. Each fall worsened the problem. One day after riding, I noticed my back didn’t hurt. I couldn’t feel much of anything. My back was numb and aside from tingling, so was my right leg. That scared me. I was used to pain. I figured it was part of athletics. No pain, no gain, isn’t that what everyone says? But numbness was new and I figured maybe I should see a doctor.

My spine was 50% displaced and was pressing on my spinal cord. Which accounted for the lack of sensation. If something wasn’t done about it, I was going to be in a wheel chair before I was old enough to vote — 21 back then.

At 19, it hadn’t occurred to me I might have a real problem. In those days, we didn’t run to the doctor for every bang, bruise or pain not because we were tougher, but because we were ignorant. We’re more sophisticated these days but in the early 1960s, no one thought much about sports injures. Kids played hockey, rode bikes and horses, played sandlot baseball. Nobody owned safety equipment. If we had, we’d have been embarrassed to use it. Only a total weenie would wear a helmet on a bicycle. Has that changed or do kids remove their helmets the moment they are out of mom’s sight?

I went to the doctor. He told me to do absolutely nothing until he got me into surgery. I got a second identical opinion. Don’t bend. Don’t lift. Don’t fall. Don’t do anything. I asked if that meant I couldn’t ride. The surgeon looked at me like I had two heads, both stupid. I figured he meant “No.”

My surgeon didn’t enumerate the risks. I doubt it would have made any difference if he had. I wasn’t going through life unable to do anything active. Whatever the risks, I wanted to be repaired. I wanted to ride. At 19, I had a spinal fusion and laminectomy.

The doctor mentioned I might develop some arthritis at the site of the surgery later in life.

“Uh huh,” I said. Later in life was a million years away. After I healed — a two-year process — I went back to riding. I never fell again. I took lessons, a wise move that might have prevented youthful injuries, but my parents were unwilling to pay for lessons. Too frivolous.

Fast forward 47 years, arthritis began to make inroads. I had to stop riding. My doctor explained if I fell, I might not get up. Ever. The fusion had disintegrated. I was glued together by arthritis, nature’s way of keeping my spine intact. When the pain got worse, I went back to my doctor.

“Surely,” I said to him, “you can do something for me.”

“No,” he said. “Pain management. Cortisone shots will help. For a while.”

I’ve been down cortisone road. The shots do help for a few weeks, after which the pain returns. The human spine isn’t engineered for bipeds. Many of us have spinal weaknesses we don’t know about until after we get hurt. When I was young, a bad back was not so common. With the passing of decades, almost everyone I know has some kind of back problem. Unless you are very lucky, the chances you’ve had a back injury are high. So I live with pain and quite possibly, so do you.

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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.

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

I yearn for a scooter, but the one I want doesn’t exist. I want a scooter that’s an ATV, but weighs like a bicycle and folds up. There is no such thing. I probably couldn’t afford it if it did, but I can dream.

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

Blood, Gore, High-Tech and Architecture

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I knew it was going to be one of those days from the moment I got up this morning. There was no guesswork involved. It was all arranged, scheduled.

  1. Drop terriers off for grooming.
  2. Come home, drink coffee.
  3. Drive to Dana-Farber for a day of tests.
  4. Be reassured I’m not dying of cancer.
  5. Drive back home.
  6. Pick up terriers.
  7. Eat!

Those of you who suffer from serious medical problems that don’t go away and can kill you, know what I mean. Regular checkups are high stress events until you (hopefully) get the word that all is well.

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Even though you have no immediate evidence that anything is wrong above and beyond the “usual” which is something like a Chinese menu of interrelated ailments and conditions, you always harbor a not-so-secret belief that something ugly is going on and you just haven’t found it … or it hasn’t yet announced its presence.

There are people — Woody Allen leaps to mind — who feel this way through most of their lives with no evidence that anything is wrong. The good part of this approach is when something ugly actually does show up, they can say “See? I told you! I KNEW it!”

Pessimism saves you from a lot of disappointment. It also keeps you from enjoying the good stuff that happens along the way. I guess for the hard-core pessimists, it’s a small price to pay. Fear of fear, fear of bad news, fear of being too happy then being let down? I can almost (but not really) understand.

Days like this always starts at the lab. This is the scene of my first battle of the day, as I try to convince them to treat my one working vein with gentleness and subtlety. Do not attack it with a spear. Cajole it with a tiny pediatric butterfly needle because if you blow it, finding another live one will consume half the staff of the labs of two hospitals. They got blood, but it took two nurses and a lot of jiggling that needle around to find the magic spot.

“You think maybe it’s deeper?”

“Let’s try going deeper.”

“Ouch”

“Sorry”

“Ouch”

“Hey,, I think I see a flash … “

“Grab it before it rolls”

“Ouch”

“Blood!”

Phew.

I frequently slice pieces of my fingers off while preparing food. I bleed like mad — blood on counters, floor — blood everywhere. I suggested to the nurses that next time, I bring a kitchen knife and slash myself, like I do at home. There’d be more than enough blood and it would be quicker than all this probing with needles. For some reason, they didn’t think it was such a good idea, but I thought it was brilliant.

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I had brought the little Canon Powershot S100, my Kindle, and more importantly, Garry. They are my defense against losing my mind. This is how I avoid excessive cranial activity, i.e., thinking. Usually I’m in favor of thinking, but under this particular circumstance, nothing good can come of it.

As you can see, I shot a few pictures, some of which turned out rather interestingly.

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Blood having been taken, it was time for the long wait for the CT scan. I was originally supposed to drink some kind of dye solution, but I can’t because I have no stomach and I’m not up for massive nausea today. I’ve gotten to the point where they say you have to do “this” and I say “No, I don’t.” We go back and forth and eventually, they acknowledge that no, I actually don’t have to do it. But they really wish I would.

They were determined to get dye into me one way or the other. After taking a look at my so-called veins, the CT tech sent me to the chemo people who presumably can put an IV into a turnip. The lab had already mutilated my good vein, so it was now a retired vein. Even using the newest, grooviest high-tech equipment, they couldn’t find a live vein. An electronic vein finder is totally cool. It looks like a flashlight, but when they point it at you, you can see all your veins like a blue network under your skin.

If you want to distract me from pain and misery, give me a high-tech toy to play with. I’m like a kid at Christmas. So they let me point the light and together we hunted the elusive usable vein.

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High tech tools notwithstanding, my veins defeated the chemotherapy staff. No small achievement. After a full hour and three nurses poking holes wherever they thought a vein big enough to take an infusion might be hiding, they gave up.

The CT scan was performed sans dye.

Then, off to the oncologist. He looked sympathetic. He always looks sympathetic. Only psychiatrists and oncologists ever perfect that look of total sympathy. I often suspect it covers a deep ennui. Best not look too closely.

Mine also looks sad, perhaps slightly troubled, but deeply sympathetic. Oncologists are always very nice.They speak softly, gently, kindly, not wishing to upset you since they figure (true) that you are upset anyhow. He looks at my labs, tells me everything is absolutely normal. (Yay!)

He looks at the CT scan, which was a big one, chest to hips. He says nothing is there that shouldn’t be. Lungs clear, everything clear. Except my spine. Which even Garry and I can see is so encased in arthritis it doesn’t look like a human spine. No wonder it hurts.

The dogs weren’t finished at the groomer when we arrived at home, so we had to make a separate trip to get them. Worth it. They look so much better and incredibly cute. More importantly, they smell better. They had gotten seriously stinky.

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Eventually, I get my reward: a big family dinner featuring a roast leg of lamb. This doesn’t happen very often. Even when we weren’t quite so poor, it was a rare event, but these days? It’s an “almost never” event.

We, the couple who traveled the world and hung out with stars mostly now hang out with doctors and sit, waiting in sterile rooms. What’s wrong with this picture?

Oh, right. It’s the getting old thing.

Have a nice day, y’all.

If the moccasins pinch, wear them

I just read another post on the power of positive thinking. I was glad to hear again how I can conquer pain and make my problems go away by believing they will.  Does God really reserve his blessing for those with a positive attitude?

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I don’t think there’s a malevolent deity or evil destiny stalking me or anyone else. Life just is. It’s not omens and portents: it’s stuff that happens.

Positive thinking is not bad.  It’s just that positive thinkers have a way of forgetting how suffering people don’t necessarily want a pep talk. They want to be in less, preferably no, pain. They want love, comfort and sympathy. My suggestion? Listen to them, find out what they want and do your best to give it to them. Your positivity may cure your problems and you are welcome to use it to make yourself feel better. Just don’t impose it on me or anyone else. Don’t force people to smile when they want to cry so you can feel okay.

I’ve got more than a few physical problems that are difficult to manage. There are bad days. I want to avoid dragging others down, but I have given up trying to make everyone else feel better by internalizing everything.

It’s unfair to tell people to relax, be happy, smile and that will make everything fine. It’s not true. Internalizing pain and sadness increases stress and makes problems worse. Don’t stop believing, but quit imposing. If you can make your own pain go away by force of will, good for you. In the meantime, remember: only you are you. The rest of us are different. A single solution, attitude or way of thinking does not fit everyone.

It is said you cannot know anyone until you’ve walked in their moccasins. Be careful: those moccasins can pinch something fierce.

Pain isn’t always a warning … sometimes, it’s just pain

It’s remarkable how much pain a non-lethal medical problem — like a bad disc in your back or an intestinal spasm — can cause …. while you can be incubating a heart attack, stroke, or cancer without pain or any other symptoms.

My back is never going to kill me. It’s a disaster and hurts like bloody hell. It makes life difficult, but that’s all it will do. The pain may be worse or better, but that’s it. Misery without end, but not life-threatening. I get esophageal and intestinal spasms that mimic a heart attack so well I’ve been hospitalized because of them until they were diagnosed and are now controlled by, ironically, nitroglycerin tabs. They are considered “medically insignificant,” but the pain they cause is breathtaking to the point where I can’t speak and am almost paralyzed by pain. My husband recognizes the symptoms and can flawlessly find my pills in under a minute, including running down the hallway to the bedroom, coming back, and depositing two of them under my tongue.

Meanwhile, I had cancer in both breasts, but no symptoms.

Go figure.

Visiting the oncologist if you forgot the Kindle but brought a camera …

A visit to one’s oncologist … the routine kind of visit when you haven’t got any deeply disturbing new symptoms and your best hope is that nobody finds anything the least bit interesting and you get to go home with all the same pieces you had on arrival. A visit after which no one calls to say you need to come back for more tests. The “normal” visits everyone who survives cancer hates, but figure as long as they stay boring, that’s good. “Survivor” as we all know, means “not dead yet,” and that’s the way we want it to remain. Whatever else is wrong with us, as long as the bottom line is “I’m alive!!” we are happy campers, or as close to happy as you can be when one of your primary doctors is an oncologist.

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Yesterday was a deferred, re-scheduled quarterly visit.

And wouldn’t you know it, I forgot to stuff my Kindle into my bag. The lab took forever and the only tech they have who can find my good vein was off. I have only one usable vein. If you miss it, good luck finding another that will yield enough blood to run the tests.

The day had gotten off to a roaring start, as it so often does, because we got stuck behind one of the areas super slow drivers. Being as our roads are one lane in each direction, stuck is stuck. Naturally, whoever they were, they were going exactly where we were going … the Milford Medical complex — Milford Hospital and our local Dana Farber outpost. We  tried not to start honking the horn or acting  crazy.

It happens every time we have to go somewhere and need to be there at a particular time. I’m not sure how they know we’re coming, but that 25 mph driver is waiting and will always be immediately in front of us as we try to get wherever we are going, almost always a doctor or hospital. Oddly, we never have any trouble getting home quickly … when we aren’t on a schedule.

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We got there more or less on time anyhow, but the lab took a long time. She needed to keep hunting for that vein. She finally found it and I tried not to act as surly as I felt. Probably I failed. I was surly. They never listen to me.  You’d think, having been the owner/operator of this body for 65 long, painful years, they’d figure I might know a thing or two about it, but they always assume I’m either senile or retarded. Maybe both.

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We had to wait for the lab. We had to wait for the doctor. Then, we had to wait some more because I needed a chest X-ray and the X-ray tech was in the other building (the hospital across the street) and when he showed up, the software that runs the X-ray machine was on the fritz. I suggested he reboot. He said the last time he did that, it totally died. I pointed out he had nothing to lose: it wasn’t working anyhow.

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He rebooted. It died completely. Another tech joined him and they concluded that the machine was (again because this is apparently a regular event) broken. I could have told them that. The reason that there happened to be a second tech right on the spot was because my patient husband, who was sitting there reading his newspaper had realized that his paper was getting wet. That it was raining outside was one issue, but we were in the lobby of the relatively new Dana Farber almost-but-not-quite state-of-the-art cancer facility. Less than 5 years old, anyhow.

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So they called the guy to fix the leak (again) because this too was a regular event. They had yet to figure out where the water was coming from. They thought maybe it was coming through the electrical system and leaking out through a lightbulb, leading me to suggest that they could put a lot of people out of their misery by upping the voltage and electrocuting people in the waiting room. The administrative nurse says “Nah, we’d need an electrical upgrade to get the voltage high enough to do anyone in, but maybe they could fix it on the next remodel.”  I love nurses.

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I had nothing to do through most of this. Lacking my Kindle, I dug around and found my little Canon Powershot 260, which I carry all the time to handle photographic emergencies. After exploring the contents of the chip, deleting some really bad pictures, I figured I might as well try to see if there’s anything to photograph in the various waiting areas of Dana Farber Cancer Treatment Center in Milford, Massachusetts. That’s what happens when you forget to bring something to read.

Why they have a grand piano in the lobby is anybody’s guess. I’m afraid to ask.

On Being A Survivor: Not Dead Yet

It’s hard to believe it’s already the 10th of October. The days are flying by and I feel like Alice in the Red Queen’s race  in Lewis Carroll‘s Through the Looking-Glass where the Red Queen and Alice are constantly running while staying in the same place.

“Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else — if you run very fast for a long time, as we’ve been doing.”

“A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”

The Red Queen’s race from “Through the Looking Glass”

I know I’m retired, but where is my spare time? How did I ever find time to work?

Today marks the 2nd anniversary of my double mastectomy. Like someone falling from atop a very tall building who hasn’t yet hit the ground, I say “So far, so good.” Supposedly, if you survive for five years, you are reasonably likely to survive for five more. That makes me 40% of the way towards being half-way likely to have a normal lifespan. Unless something else gets me. Just because you’ve had breast cancer doesn’t mean you aren’t going to get another kind of cancer or die of a heart attack. My first husband survived kidney cancer only to die of heart disease. Some people are just lucky.

I feel fine, or as fine as my advancing arthritis and other assorted ills allow. I also felt fine when I had cancer in both breasts, so feeling fine could easily mean that whatever is killing me, I don’t know about it. Yet. One of the reasons cancer is so dreaded is its lack of early warnings. By the time you have symptoms, it’s too late. I had a double mastectomy so I’m unlikely to get breast cancer again. I don’t have breasts. If I get something, it will be fought on a different battlefield, like my lungs, stomach or pancreas.

I come from a cancer-riddled branch of the family tree. My brother died of pancreatic cancer five years ago. He was younger than I am now. My mother, at my age, was on round three having already lost both breasts in previous bouts and in that final dance, the cancer had migrated to anywhere her lymphatic system could carry mutated cells. A few years later, she was gone. I look in the mirror; it’s eerie how much I  look like her.

I don’t usually dwell on my odds of living to a ripe old age. It’s pointless. Statistics are based on a lot of people who aren’t you, don’t have your history. That’s why you’ll never get an oncologist to give you an answer to the question “What are my odds of beating this?” They don’t know. They can quote statistics, but they know better than anyone how meaningless statistics are.

Despite the dice being heavily loaded in favor of cancer winning the final round, cancer hospitals do virtually no screening for early detection. They won’t do anything unless you make so much noise you manage to overcome their protocol. ALL protocols are based on statistical formulae. Every hospital has its own protocol. Some perform a few routine tests, but many, including Dana-Farber, do not. Whatever the protocol in place for your institution, every oncologist based there will follow it with religious ferocity, regardless of how absurd it may be for you.

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Red Queen (Photo credit: Omnitographer)

The day you are diagnosed with cancer, you enter a tunnel. You have no choice about where you’re going or how you will get there. You will just do what you are told until you are “in remission” or dead. Cancer patients aren’t people. We are “cases.” Maybe that’s how oncologists cope with their jobs. It can’t be easy. Regardless of your medical history, they will doggedly follow the protocol and will not deviate. At least not without one hell of a fight.

Dana-Farber is a fine institution, but they have a protocol that says screening is a waste of money, so you wait until you feel a lump or have symptoms indicating something is wrong. I passionately disagree with this approach. It’s stupid.  Getting my doctor to deviate from it (which I did, but not easily) was ridiculously hard. I succeeded by becoming such a nuisance it was easier to give me what I wanted (a chest CT) than keep fighting. I have been sick a lot and know that passivity can be a death sentence. If you want to live, you have to step outside the natural tendency to assume that your doctor always knows best and recognize that you’ve lived in this body a long time and know it better than any doctor possibly could. That many doctors refuse to recognize that patients know what they are feeling and know when something is “off” is infuriating and dangerous. I’d like to say that they dismiss women more than men, but I don’t think that’s true anymore. It was, but now they treat everyone as if they are stupid. Equality has been achieved.

Call me crazy, but isn’t early detection the gold standard in cancer care? Without screening, how early are you going to detect anything? Just a question for you medical types out there.

In theory, I have a good chance of never getting this cancer again. It was caught while both tumors were small. Both were a type of cancer (but not the same type) that are slow-growing and not very aggressive. As far as anyone was able to test, there was no sign of it having spread anywhere and the surgeon, who is very good, left wide, clean margins. Margins are very important in cancer surgery. You get to learn all about this while being treated. But, as one cheery oncologist so aptly put it: “It just takes a single stray cell.” He smiled. This is what passes for a joke in the cancer business.

I heave a great sigh. I can’t pretend it doesn’t bother me. Of course it bothers me. I’m not stupid. My mother died of breast cancer and my brother of pancreatic. Both maternal grandparents died of cancer too. It doesn’t take a genius to recognize a pattern. Survivor means you aren’t dead yet. Like being an alcoholic, even if you’ve been on the wagon for decades, you aren’t cured … you’re just in remission.

Last March, just as I was about to turn 65, I went for my quarterly dose of terror. All went as expected and Garry and I were in the car on the way home when my cell phone rang. It was my oncologist.

“You have to come back.”

“Why?”

“We need to rerun your blood tests.” I hate blood tests. I have no veins.

“Can I come tomorrow? We’re half way home …”

“No, come now. Just turn around and come back.”

That is not what you want to hear from your oncologist. Just having an oncologist is bad enough, but hearing him say your blood test needs to be redone is stomach churning.

Back we went. Zip, zap, zing. Before I could say “Hey, wait a minute,” I was in the emergency room, on a gurney and in a room hooked up to intravenous drips and who-knows-what-else. I had no idea what was going on. As far as I could tell, I was fine. My blood test results disagreed with my assessment and had triggered the alarm to my medical team. It was March 8th, three days before my birthday. The last place on earth I wanted to be was in hospital with tubes everywhere.

If any of you have watched Woody Allen movies, you may recall that he’s always convinced he has a brain tumor but no one ever takes him seriously. I am the antithesis of Woody. I think I’m fine. Everyone else is getting hysterical. It turned out the doctors really were convinced I had a brain tumor even though I had no symptoms of a brain tumor, other than being a nut case, but that was not news. Physically, I felt better than usual. Any symptom I had was part of a known problem already being treated or was being ignored because it’s untreatable.

Cutting a long story short, I had very low blood sodium levels. So low that the medical team was surprised I wasn’t dizzy and falling over. Typically, very low blood sodium is a signal of a tumor, often a very big brain tumor. We had skipped over benign possibilities and gone directly to the scariest possible scenario. At least they were taking me seriously. That’s good, right? Thus began the hunt for my big tumor. I was imaged, probed, poked, and biopsied from top to bottom. I particularly enjoyed the one where I had to drink a lot of barium because believe it or not, it tasted better than the food I’d been getting and was significantly more filling.

Before I escaped, they had run every test they could think of and a few others, too. Nothing. Normal. Clear and clean. The good part of this experience was I got to know what few cancer patients ever know. As far as current medical technology could tell, I had no sign of a tumor anywhere in my body. I hated being in the hospital, but in the end, it was worth it just for the reassurance.

I was very firm about being released before my birthday. I’ve been in one or another hospital for two birthdays and two wedding anniversaries. I didn’t care to spend another milestone in a hospital bed.

I’d have been more sanguine if  the food hadn’t been so awful. You would not believe the terrible things a hospital kitchen can do to an innocent chicken. Or worse, a piece of salmon.

I Digress

When I was having my initial surgery at the Faulkner Hospital in Boston, the food was terrible (of course), but it sounded great. These days, instead of showing up on a pre-arranged schedule with something inedible, you can select something inedible from a beautifully designed and professionally worded menu. In some hospitals, you can call for room service and they’ll feed you any time you want, as long as it’s before the kitchen closes, usually around 6 or 7 in the evening.

My friend Cherrie was staying with me at the hospital. She is the definition of a good friend, the one who cancels her life and sleeps in a hard recliner in your room while you try to come to grips with having been surgically redesigned. This is a digression to my digression.

The menu of the day featured “honey-baked salmon.” I love salmon. Actually, I like most fish, but I particularly like salmon. How bad could it be, right?

Our dinners arrived. I don’t know what she had ordered, but it wasn’t the salmon. I picked up my knife and fork with every intention of cutting off a piece of fish. The salmon fought back. I worked a little harder. Maybe I was weak from surgery and drugs. Finally, I managed to separate a piece of salmon and after some effort, spear it with my fork. I put it in my mouth. It continued to fight, battling each attempt by my incisors to incise. It seemed to grow in my mouth. The more I chewed, the bigger the piece grew. Finally, I swallowed it.

“Cherrie,” I said, ” I can’t eat this.”

“It can’t be that bad,” she said.

“Oh yes it can,” I assured her.

She took a piece, put it in her mouth, attempted some chewing, and spit it out. “What did they do to this? Is this edible? Is this fish? Is this food?” We started to laugh and could not stop.  The more we laughed, the funnier it was. The only problem was I was at the post-operative stage when laughing hurts. I was full of tubes, drains and stitches. Nonetheless, laughter felt good. Pain and all.

I could not answer her question. It looked like salmon. Right color and shape, but its appearance was a trick of the light, perhaps done with mirrors. It was really a building material, perhaps a salmon-shaped roofing tile.  We stared at it for a while, then shared Cherrie’s dinner. Conclusion: Do not order fish in a hospital. Bring your own food or consider fasting.

End of digression: We now return to our show, already in progress

Probably half a million dollars worth of tests later (don’t knock Medicare; I’d be dead without it), the answer was “idiopathic something or other.” Idiopathic is medical terminology for clueless. I had test results but no discernible cause. Fortunately, they did have a solution despite lacking a diagnosis. I would forever have to limit my intake of “regular” fluids. No plain water, fruit juice, or soda. I can have two cups of coffee (or something else “normal”), but everything else I drink has to be full of electrolytes, in other words, a sports drink. Me and Powerade Zero are now close buddies.

Thus as of last March, I didn’t have cancer and after I started drinking sports drinks, I stopped having foot and leg cramps that had plagued me most of my life. My family doctor thinks I probably always had low sodium levels that were borderline or marginally deficient. When I was tested in March, I had been drinking more than usual because I was chronically slightly dehydrated and was trying (ironic, eh?) to drink more. It was odd being told I to limit my fluid intake. Unless it’s a sports drink. I can have as much of that as I want.

I began drinking electrolytic sports drinks exclusively, other than my morning coffee. You would have to kill me before I would give up morning coffee. It must be accomplishing something because I am not thirsty all the time. Previously, the more I drank, the thirstier I got … so apparently there was something wrong, but no one knows what. Maybe it’s one of those genetic anomalies that seem to run in my family. Fortunately, the solution was simple and I really have learned to be okay with, if not actually like, Powerade Zero. Who’d have thunk it, eh?

Now, it’s October. I have another oncologist appointment coming up right before Thanksgiving. I do not expect to hear anything exciting. In fact, I very much would prefer to limit all medically related excitement for the remainder of my life.

Two years. Life changed a lot, physically and mentally. I hate being told I’m brave and am annoyed by people who think that it’s a blessing to survive something I didn’t think I should have in the first place. I am anti-pink think and still trying to reconcile this body with someone I recognize as me. I often feel as if I have been stuffed, sausage-like, into a casing humorously referred to as my body. I have a lot of negative feelings about my body. My fake breasts and I are not on good terms. They feel like alien invaders. They look fine, but they aren’t me.

I don’t have any wisdom to offer anyone except for one thing: Get the best surgeon for whatever kind of cancer you’ve got, someone with a lot of experience and a superb reputation. Do not go to the most convenient hospital unless it is also the best hospital. That initial surgery is the most important one you’ll ever have and if it isn’t done right, you can’t call for a replay.

I survived because I wanted to live. The alternative was death and I wasn’t ready for that. Surviving — and whatever it is that motivates you — is a very individual and subjective. What helped me were my husband, my best friend, a sense of humor, and reading a lot of escapist fiction. Now, I blog. I take pictures. Photography has been my hobby since I was given my first real camera and I have always been a writer. Blogging gives me freedom to write whatever I want and. It’s nice finally not having a boss telling me what I’m allowed to say.

I will forever feel that today is my real birthday.

Autumn is back. My year has come full circle. Trees are gold and red.

I’m alive. Good enough. Whatever the future holds, I’ll deal with it when it gets here.