A year ago today I had my leg cut off

At six in the morning a year ago today I walked into a hospital knowing I wouldn't walk out. It hasn't been a fun year, but so far the sarcoma that made it necessary to cut off my right leg at the hip hasn't been active in my lungs, which is a likely scenario and will kill me within a year if it does. 

Casts of severed limbs in a museum display case.

Today, right before writing this, I heard activity outside my window. I turned to look and a large hawk was there, banging around the hollow cylinder used to thwart seed raids by squirrels, as it tried to land on the cylinder. It slipped off and landed clumsily on the ground.
Hawks, of course, do not eat birdseed, even though they are birds. Is there, I thought, some kind of hawk famine going on I haven't heard about? 
I heated up some frozen meatballs and crutched outside and approached the bird feeder. The hawk flew off. Another hawk was in a tree nearby. An odd sound came from the bird feeder. It took me a few moments to determine that it was coming from the hollow cylinder. I'm not great at identifying animal noises, but I do know that little chuff sound squirrels make when they bark, and it turned out that it was indeed a terrified squirrel in the cylinder, clutching to the iron pole. (Yes, it's interesting that a device meant to deprive squirrels of food was in this case protecting one from a gruesome death.) In addition to its bark, the squirrel was making a pitiful cry. Isn't it odd that humans can know that despite having so little in common with squirrels?

A squirrel hiding from hawks in a bird feeder protection device.

For those of you who hate squirrels, I get it. If they get in your attic or walls it's bad news. But it's a stretch to call them rats with bushy tails. They are, for the record, the most intelligent of all rodents, so give them a little respect for that. And their ability to climb makes the best humans at it look like oafs.
Even though it's chilly here in southeastern Pennsylvania, I sat in a chair to keep the hawks away and waited. After about ten minutes, the squirrel poked its head out, looked around, and ran off to a drain pipe thirty feet away it could fit into if necessary. I didn't know squirrels could run as fast as this one did. When it got to the pipe, which is under some holly trees, it stood as tall as it could, scanning for danger, then scurried into the pipe just in case.
It had clung to that iron rod for a total of about twenty minutes. I admire what creatures will do to survive. Me included.

A stable loser

Why yes, as a matter of fact, I have been drinking. And the drinks I had were at 3:30 this afternoon. I don't usually do this. I go weeks, even months at a time without touching alcohol at all, and when I do drink, I don't drink much. I buy cases of beer that are exceptional because the beers are six ounce bottles or cans, far less than the usual, and when I'm in a drink-every-day mode I have just one a day, with dinner.
So why did I drink one of those and then a vodka martini (i.e., a glass of vodka with olives) after it? Because I wanted to celebrate getting a clear scan, that's why. 
I get, you see, scans every three months to see whether or not the bone cancer has spread to my lungs, which will ensure a lingering and unpleasant death. The scan I got two days ago has been read (they do that fast these days) and I picked up the report and the disc (for the doctor) this afternoon. 
If you're not in a situation like mine, with a sarcoma (bone cancer) that required amputation of my right leg six months ago, you won't have had the feelings I do when this happens. The anxiety is so great that you almost wish the report would start out saying something, "Uh-oh. You're history, pal," and just get it over with. Instead, mine this time kept using the word "stable," which is good. I do have a nodule in a lung, which is bad, but that showed up awhile ago and if it remains stable I'm all right. For now. 

American medicine is advanced in many ways, but one way in which it isn't is when it comes to records and distribution of them. They still use fax machines! What is this, 1997? And they put the images on CDs, which many newer computers don't even have slots for. Part of what this means is that I have to drive six miles or so to pick up the report and disc. A nerve wracking drive which, if you're ever faced with would be better off done by someone else but I've always been alone (see blog's title) so I have to do it myself. I had to focus intently on the road ahead and calm my mind so I didn't do something dumb like blank on a traffic light. 
At the imaging facility, I had to wait five minutes for the clerk to bring me my stuff. As she approached, I studied her face. Nothing there. 

What would you do if handed a manila envelope with news that was tantamount to a thumbs up or thumbs down on your life expectancy? Open it right there, wait until you got to the car, or wait until you got home? My choice was to wait until I got home. I'd cleared the table of trivial stuff (the crossword puzzle in the newspaper, mail I hadn't opened yet) before leaving the house. When I got home, I put the envelope on the table and opened a beer and poured it into a glass. If it was bad news or good, a drink would be in order.
You know the next part. Good news. 
This means I'm good until the next scan, which will be in three months. I wonder if my seventy-five to twenty-five (bad to good) odds get better each time I get good results. I must remember to ask the doctor that when I see him on Thursday.
With my luck (always bad, throughout my life) I'll probably be diagnosed with cirrhosis next week.
Incidentally, two days after the last time I got a clean reading three months ago—this is only the second one—I slipped, fell, and broke my shoulder so badly that I'm still in pain. Alcohol had nothing to do with this. Stupidity did.

A month ago

One month ago this morning I was at in hospital waiting to have my right leg amputated. I waited to be taken down to the operating room on a gurney on a floor two flights above the operating room. Lying down was an option. The space was small and curtained off. But instead of lying down I stood up, wearing my gown and those socks with grippers they give you, and paced back and forth. The only reason I did this was because I knew it would be the last time I'd walk anywhere. I massaged the leg, wiggled its toes, and stared at it.

Creepy as can be

When I was a boy, in the 1960s, a hypothetical question came up during a family chat. The question was, if you had cancer (which, at that time, nearly always meant you were going to die) would you want to know? The question sounds crazy now but it wasn't that long ago that patients weren't always informed fully of their conditions. My mother said she wouldn't. My brothers and I said we would, as did, I think, my father. 

Goya's "Saturn Devouring His Son."

These days we all have access to our medical records, of course, and it's for the best. Doctors make mistakes patients catch, or sometimes they don't think of something a patient might. I recently looked at a report based on the amputation of my right leg last month. It's like reading an autopsy report about yourself and in this case it is, indeed, about a chunk of myself. It's pasted below, but I don't plan to read it again.

 

B (2). Right leg, disarticulation: Received fresh in a specimen bag containing patient name and "right leg" is a right above-the-knee leg amputation measuring 81 x 17.5 x 16.5 cm consisting of femoral head and entire right leg extending down to the foot. The leg consists of an intact femoral head with a soft tissue resection margin that is red-pink and consisting of muscle, fat with overlying tan-yellow skin. The soft tissue overlying the thigh is serially sectioned to reveal a tan-yellow encapsulated lesion that is calcified measuring approximately 12 x 5.5 x 1.5 cm lying on the anterior surface of the leg. The mass grossly abuts the underlying metal rod implant and is 3.5 cm from closest overlying skin. The mass is 10 cm from the medial resection margin, 14 cm from the anterior resection margin, 11.5 cm from the lateral resection margin, and 16 cm from the posterior resection margin. The resection margins are inked black and the specimen is representatively submitted as follows:

B1. Anterior resection margin, representative

B2. Medial resection margin, en face, representative

B3. Lateral resection margin, en face, representative

B4. Posterior resection margin, representative

B5-B19. Tumor, representative, after brief decalcification

 

Gross done by Aidan P Kerr at 2/26/2018 3:39 PM.

The surgical site

Friends and family are being very kind since I returned home last week after the amputation of my right leg five days before that. They want to take me out to dinner or bring meals to me. 

A Philadelphia view from a swanky 15th floor doctor's office.

Unfortunately, I'm not as I appear. The surgical site (for some reason I balk at calling it my "stump" but I guess I won't after some time) is a bundle of raw nerves, a drain, and many black stitches pulling on red skin. It's hard for me to sit still for longer than a few minutes before either the site hurts or phantom pain or sensation does. I may look like someone who would rather do nothing other than sit and eat and watch TV, but when I'm not lying down trying, futilely, to get some sleep, I'm up and about, sweeping floors, vacuuming, things like that. 
I'm eating well enough, but I wouldn't say I'm enjoying meals, and eating with people I like wouldn't change that much. I've never been good at declining invitations gracefully (at my best, my degree of sociability has always been well below average) but I'm working extra hard on doing so now. I don't want to get pigeonholed as a grouchy amputee, best avoided.   

Home again

For those of you who may be curious, and I'd be one of you, the removal of my right leg six days ago resulted in a weight loss of a little over twenty pounds. That's not what it would be for most men my height and (previous) weight of 5' 9", 180, because the leg was seven inches shorter than the left, the difference being in the femur, and the calf muscles were fit but not nearly as developed as those of the left leg.

A night view from a hospital corridor.

 A furious nor'easter tore through the region and made it impossible for either of my brothers to pick me up the day of my release from the hospital, so I spent an extra day and night there using it as a sort of hotel, but one where they come by and give you medicine and take your vital signs now and then. Late at night, I put on my regular clothes and crutched through some of the halls to get out of the room and get some exercise. Nurses and others glanced up at me from their work stations, but none took action. I could see by their faces they were thinking, "Not my problem, this guy," which was fine with me.
Now I'm back in the house. Kind sisters-in-law did much cleaning and reorganizing. Most of it is for the good, but some little things I was sentimental about got tossed. A favorite juice glass, a liquor my late mother liked that I'd have a few sips of once or twice a year. But I am grateful, overall.
It takes longer to heal when you get old. Nylon stitches irritate. Making breakfast and taking a shower—sitting down—are productions. All this I've been through before, so I know it will improve in time and become normal. But still.
Mustn't whine, though. Got to soldier on.


 

Body parts

If you're like me and have one limb different from its counterpart, you may tend to assign it the characteristics of a being in its own right, a separate entity. 
"Nope," you might say, "the old left arm just isn't up for tennis today. He needs to take a few days off."
In my case that limb has been my shortened right leg since childhood and in less than twelve hours from when I'm writing this it's going to be amputated at the hip. As inferior a limb as it's been, and despite the pain and embarrassment it's caused me over many of my 59 years, I regard it benignly. Its execution tomorrow, which will be done to try to stop the spread of a fatal, untreatable disease, seems like a harsh solution, though I know it's the only thing to be done if I want to have a slightly better (twenty-five percent versus zero) chance of living longer than another year or so. 
It's part of my body. It has nerves but no brain. It's a living thing but without any ability to survive on its own, to feel pain, or to be aware of its fate. Its removal tomorrow will mean nothing to it, yet much to me, of course. 

For the last time

It was pouring this morning, in keeping with an unusually wet winter in Southeastern Pennsylvania. The rain was heavy enough that even though my driveway isn't very long I took an umbrella to get the newspaper. 
As I was doing it, I realized that after I have my right leg amputated tomorrow, I'll never use an umbrella again. (The cut will be so high that I'll be on crutches for the rest of my life.) I've been thinking about the big things I won't be able to do, of course, but nearly every day little things like that come up. 

https://youtu.be/9urMlYfFn7w

This afternoon I made a video of me coasting into my garage on my bicycle. I can't really ride it anymore—the leg doesn't bend enough—but I've been taking it out lately and walk-coasting it around the neighborhood. There's a steep part that I go fast on and it brings me great joy.

I know this, but still ...

I've been trying to get my house and my mind ready for life with one leg instead of the usual two, which will begin next week. I've lived on crutches long enough to have some idea of how to set things up, but now I'm moving to the first floor, into a different room. The room that was my late parents and has stayed much the same since they died six years ago, except for clearing out a lot of their clothes.

My grandfather, who died in 1952, six years before my birth.

I'm taking down some of what they had hanging up and putting up some things I like. Paintings by artists friends of mine, for example. Other things from elsewhere in the house. 

I'm doing the practical things too, of course. My clothes, bathroom things. A friend told me that keeping busy with these things would help me cope with it all, but I'm not finding that to be true. I need breaks now and then, and those involve going out to buy food items that keep.
Through all this, I realize how childish and selfish I'm being. I think of the slaughtered children in Florida and what their parents are enduring and I realize that my feelings about losing one leg are laughable. Any one of those parents—and people who loved similar victims everywhere—would be overjoyed if they could have the deceased returned to them with no legs or even arms at all. 

My imagined future

I get the leg amputated a week from today. I cope with the pain and put a brave face on things. Though I'm adept on crutches, I'm far less mobile than before. Even strong arms are not designed to bear that much weight, and I'll be sixty in a few months. The wear and tear will take their toll. Meanwhile, every three months I'll go in for a chest scan with contrast, which means I'm injected with a dye to see whether or not the disease has spread to my lungs, which it will have a seventy-five percent chance of doing despite the amputation, and will kill me in a year or so. When the results show nothing, I'm as happy as I can be under the circumstances. But not for long; the three months between scans pass quickly. If nothing shows up after two years of this, the rate of scanning goes to twice a year. That's an improvement, but still, for the rest of my years my concept of "the future" is a truncated one. 

https://youtu.be/LrsmOfyI7vo

If I survive those years, mobility becomes an increasing problem. I can drive, but once I'm at a destination most other things become hard enough that my motivation to do much lessens. Going out to dine in a restaurant or see a movie in a theater is no longer worth the trouble and honestly, how much have I ever really gotten out of viewing paintings in museums? I still go to family events and my closest friends visit me but over time my world shrinks to my immediate surroundings. I savor the view of the backyard from the porch and enjoy watching dog-walkers and runners through the kitchen windows. When I'm sixty-five, I'm living like someone twenty years older than that.
At times I look at the videos I made in the last weeks before the amputation and the photographs I printed out. I made them knowing that it would fascinate and depress me to see them in the years ahead.

The overlap

As the day of the amputation of my right leg draws nearer—just nine days from today—I'm finding that my usual shopping and errands are getting more and more orientated toward my convalescence. I'm buying food in jars and cans or things that can be frozen, like butter. I've replaced all the overhead light bulbs with LEDs, not because of their efficiency (though I love that), but because they last for many years and mounting a chair to change a light bulb when you have one leg is difficult at best, unsafe at worst.
I don't want to tell you how much booze I've purchased. I am not a big drinker, but there's something about the image of a man with one leg, alone, crutching into a liquor store to buy a bottle of wine or something harder that seems so sad that I hope to put that day off for awhile. So I've stocked up.
Meanwhile, the incredible fact that having a leg cut off is being done voluntarily never ceases to stun me. It's not like I've been sentenced in a court of law to have twenty percent or so of my body executed. I could, even in the hospital on the morning of the scheduled operation (February 26th, 2018), simply say, "Forget it," and walk out. 
Then I could buy an airline ticket and head to the opposite coast, which in my case would be California or the Pacific Northwest. 
When I take my walks at dusk I see the contrails of jetliners headed that way. I could be on one of those planes.
If I did so, my chances of dying due to the spread of my condition would go from only twenty-five percent to one hundred percent. With odds like that, it's a little tempting.

Three jetliners head from Philadelphia to points west on a late winter afternoon.

Tumor tree

This may be the tree equivalent of what my right leg looks like inside. The bulge would be the tumor that's throwing bad cells to other parts of my body, like my lungs, and therefore will be amputated on two weeks from the day I'm writing this. 
Just think; if I were a tree I'd be funny looking but otherwise fine.
A very old tree joke I still like: I wanted to be a tree surgeon but I fainted at the sight of sap.

Bizarre video

This is the kind of video you take when you've scheduled to have one of your legs amputated at the hip in twenty days to give you a just twenty-five percent chance of living longer than a year or so and you'll be on crutches for the rest of your life and never walk again.

I'll be an amputee in 24 days

Is that word, "amputee," all right? Or is it like "lame" or "cripple"? I have no idea. Maybe I should be saying "one who has lost a limb" instead, but I'm one of those who tries to use fewer words rather than more. Oh well. When it's about you, you can say what you want. A few years ago I volunteered for an organization for the blind and all the blind people I knew there called themselves blind.
The wait at the cancer center yesterday was a long one, over two hours, and I'm a smart phone hold out, so I didn't have a screen to stare at like nearly everyone else does these days. So I sat up straight, closed my eyes and meditated for a bit.
Even though I knew the final test results would be bad, only confirming with lab results what the doctors and I already knew, there's always that little ray of hope you have that they'll come into the examining room with embarrassed smiles, smacking their foreheads and saying they goofed, that everything's fine, now get the heck out of here and back to your life!

A jetliner heads west on an East Coast winter evening.

That, of course, did not happen. My right leg will be amputated on February 26. My doctor said he could do it the nineteenth, but I demurred. The more time I have to mentally prepare, the better.
Here's the oddest thing about yesterday. I was certain that morning that when I got home after getting the news firmed up I'd pour myself a stiff drink. But I didn't. In fact, I didn't even have the seven-ounce beer with dinner I usually do. I also didn't take the anti-anxiety medication I've been taking for a few weeks, and I slept fairly well. 
I can speculate why this is true—knowing and accepting reduces stress, and all that—but really, I don't know why I feel this way. Your guess is as good as mine.

Standing, farthest to the right

I may have said this before, but I've always hesitated before agreeing with people when they say things like, "I'm glad my mother isn't alive to see this."
Talk about a judgement! And sometimes they're talking about minor things. The destruction of a beloved building, the election of a bad leader. Even major events, a disaster in which many innocents are killed, for example, don't always reach the bar.
As upsetting as the news flung at us throughout our days can be, it's doubtful many would rather die than learn of it.
Then there's me, my upcoming leg amputation, and my probably terminal condition, all tied to a bone disease I had as a child. How would my mother, who died in 2011 and would be eighty-seven today, have taken my unfortunate news? Actually, probably pretty well, provided dementia hadn't crept in, which it hadn't at the time.
Honestly, although I'm nearly sixty and I've been making my life decisions for forty years now, a part of me wishes she were here, driving me to doctors' appointments, getting information, talking things over with my father (who also died in 2011) and making important choices, as she did when I was four years old.
That sounds horribly selfish of me—bring back Mom and put her to work! I don't mean it that way, of course.
My mother is in the photo here. The title of this post tells you which girl she is.

Girls at a pool, circa 1946.

Freak show

What do you think when you see pictures of yourself? I'm horrified by my own. The internal image of me I carry around conflicts sharply with photographs of myself.

Me holding a Corgi with cabins in the background.

The picture here was taken today (Sunday, January 21, 2018) by a friend in Valley Forge Park. I was walking a sister-in-law's dog (I picked her up just for the photograph). I look so misshapen, a word I seldom use because a) It's antiquated, and b) I'm not sure how to pronounce it, which I know doesn't matter when you're writing something but you should know how to pronounce the words you write.
Soon I'll have my right leg amputated and look even weirder than I do here. (See previous entries for background on this if you wish.) 
This evening, my city's football team, the Philadelphia Eagles, will compete against the Minnesota Vikings in a playoff contest. As with every football game ever played since 1958, I will not be watching.

The brothers know

My two older brothers came over at noon today and I told them about my osteosarcoma and how it will require having my leg amputated and has spread to my lungs so even if I do get my leg amputated it will probably kill me in a year anyway, even if they can take out what's in my lung right now.
They handled it well, giving advice and all that. The main thing they said to do is to wait until I'm a hundred percent sure about everything (I have two meetings coming up this week that will reveal much, most of which I doubt I'll be happy to hear).
It's good for them to know this because some things may happen faster than you'd think—the amputation, for example—so getting prepared mentally will be good for them.
Meanwhile, I think about dumb stuff like my legacy, or lack of it, not having had children or done anything that will outlast me. 
I have two nieces and nephews. Two are the age when getting married and having children wouldn't be a bad idea, if they want to. The other two are a little young for that. They're still in college. 

My father weeding around his mother's grave stone.

In any case, I want one of them to tell me they'll name a son after me or, if it's a daughter, give her my middle name. 
Names have never meant much to me. Sometimes I'll meet someone who gets genuinely angry if you get his or her name wrong. They get all, "It's who I am. It's my name!"
Please. Your name is an arbitrary label your parents gave you. You can change it if you want, and many do. I've head that in some regions of America people call cars and trucks "vehicles." Fine with me. I eat hoagies, sometimes.
But now I'm imagining a twelve-year-old boy looking through an old photo album and seeing a picture of me. "Who's that?" he asks my niece or nephew. They tell him it's his grandfather's brother, who died before he was born. The kid goes, "Huh," and turns the page.
What if, instead of that, my niece or nephew says, "That's the man you were named after. He died before you were born." The kid looks at the photo for several seconds. 
Then he says, "What was he like?"

Types of snow

Most know that lake effect snow is when moisture from a lake is picked up and then falls inland in the form of snow, as was the case recently in Erie, Pennsylvania, which saw five feet of snow from one weather event as a result.

Part of my driveway, cleared of snow.

It seems that where I live there should be something called suburban effect snow because no matter how much the forecasters in Philadelphia—just twenty miles to my east—say will fall in this region, the reality in my suburb is significantly more. Today, they called for two inches. I got around five.

Usually, snow in this area is followed by warm days so with snow like that I'd do a minimal amount of shoveling. Not this time. It's going to remain cold for several days longer and get colder than it is right now, which is 22 degrees.
Not that I'm complaining. I shoveled. All of it. Edge to edge. I followed that by sweeping. It took about two hours because I did it slowly. The distraction of using my body was a welcome one, especially knowing that in a couple of months, after I've had my right leg amputated near the hip, I will never shovel snow again.
Of course, even with the leg gone, it's probable that I'll never see snow again either thanks to the sarcoma I have growing in my lung which, if not removable (I'll find out January fourth), will kill me pretty fast.

Getting help

It can take awhile to get an appointment for a procedure at a busy big city hospital. 
I'm seeing that as a good thing at the moment, because even the best news is bad (leg amputation and likely death) so what's the rush in having a bone biopsy that will simply confirm what the X-ray shows. I have over a week of not being 100 percent sure. I'll take that.
Meanwhile, I will soon see a psychiatrist said to be an expert with people with the problems I have. I have some close friends but I've always lived alone, so I'm going to do this. I'm counting on his being liberal with pharmaceuticals that help alleviate depression and anxiety. I say that as someone who more believes in working things out in your mind, but there's no time for that now.

Ryan Gosling and Emma Stone watch a movie in La La Land.

I seek distraction. Happy things. I took La La Land out of my public library and watched it twice. Upbeat, happy, and I like the songs. The word "cancer" is spoken just once and the movie is more interested in life than death. It's so good to see a movie sometimes in which there are no guns and not even one punch is thrown.
Sneer at musicals for being unrealistic? If that's your issue, I assume you watch only unedited documentary footage.

Hating the young

You young people, with your healthy bodies and, worse, decades of time before you, time that will bring bad things to the planet and everything living on it, but time that will also see innovations that will extend your lives to as far as human life can go, a not agreed on figure but a figure that may reach a century-and-a-half by the time you arrive there. Time that will cure conditions like the one I have, which will soon take my leg and then, very likely, my life.

A hawk soars overhead.

Humankind is on the cusp of this. The gloom we see now, particularly in the United States, will prove to be a blip, an aberration. Americans will come to their senses and again invest in their nation's future and extend its beneficence to all around the world.
It's awful to know you're going to die during a political and cultural downturn, but as death approaches that will take a place far down the ladder of my concerns.