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.
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.
- How did your doctor’s appointment go? (teepee12.com)
- Me, A-Rod and Raw Onion (teepee12.com)
- Women choose body art over reconstruction after cancer battle (theguardian.com)
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.
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.
- Dzhokhar Tsarnaev Captured: Alleged Boston Marathon Bomber Arrested Following Manhunt (wakinguphumanity.wordpress.com)
- Boston marathon snapshots take on new meaning (connect.dpreview.com)
- Shots fired in Watertown during manhunt for Boston Marathon bombing suspect (bangordailynews.com)
- Chechens and the Boston Marathon (brobrubel.wordpress.com)
- Uncle Of Marathon Bomb Suspects Calls His Nephews “Losers” (praiserichmond.com)
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?
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.
There are a lot of members of the back pain club. After you join the club, you usually get a lifetime membership. I finally discovered I have a problem I can’t fix. No amount of persistence, research, medical attention or cleverness is going to make it go away. So I’ve designed the world to make my back happy. We have a back-friendly home. From our adjustable bed, to the reclining sofa, our place is kind to spines.
There’s no moral to this story. It’s just life. If you don’t die young 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.
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.
- Drop terriers off for grooming.
- Come home, drink coffee.
- Drive to Dana-Farber for a day of tests.
- Be reassured I’m not dying of cancer.
- Drive back home.
- Pick up terriers.
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.
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.”
“Hey,, I think I see a flash … “
“Grab it before it rolls”
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.
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.
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.
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.
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.
- Breast Cancer Is No Cause for Celebration … I Hate Pink (teepee12.com)
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.