Horror show: what it's really like to be sick

 

I’ve been reluctant to write in any detail about the medical “issues” I have endured over the past 6 months or so (actually, it goes back to November – so it’s more like 8 months). I swear I didn’t realize something was seriously wrong until a week or so after Halloween, when I suddenly felt an agonizing pain in my lower abdomen on the right side. From everything I have ever heard about appendicitis, I assumed that was what it was, so I  finally caved and went in to Emergency, knowing it would be an almost-worse ordeal.

And it was. THREE HOURS LATER, after sitting there twisting and writhing in agony (hey, I could have done that at home!), the hospital staff finally got around to me – took some blood, poked around, then suddenly wanted to do a CT scan. This surprised me, as you usually have to wait months for one. 

Then suddenly, things changed.

A nurse came up to me with a very serious look on her face, and in a very serious voice said, “Margaret, you have an infection.” Infection? Of what kind, and how? I’d never heard of an infection brewing in an otherwise healthy bowel.

But no, my bowel wasn’t healthy at all, or at least it didn’t look good on the scan. They let me have a copy of the report, and they shouldn’t have. It was mostly technical gobbledygook, but I did see one word that jumped out at me in 3D: MALIGNANCY.

What it said was, “underlying malignancy must be ruled out”. Ruled out?

They kept me overnight, another shock, and then I was fast-tracked for all sorts of things. Almost right away, I saw a gastroenterologist, then had  an “emergency colonoscopy”, which was messy, agonizing and frightening (nothing like the previous ones I'd had). I seemed to be bleeding from somewhere deep inside. Then, on Christmas Day (Christmas Day?), I got a phone call giving me a date for another CT scan. The scan took place on New Years’ Eve. Needless to say, the festive season wasn’t very festive, and I remember feeling rotten on Christmas Day and trying to act normal, so as not to bring the whole family down. 

Then came the surgery. Jesus God, the surgery! I can’t or won’t go into all the details, because half the time I didn’t even know what was going on or what was happening to me. This upset my kids, who seemed to think I was deliberately withholding information from them. But I was on so  many painkillers that I was barely coherent. They had apparently removed about a quarter of my colon and reconfigured my entire gut, but fortunately, since it was done laparoscopically, all I had were two little incisions held together with surgical glue. 

Quite  literally, I was glued together.

The surgeon initially told me I’d  be in the hospital 2 to 5 days. Instead it was nearly 2 weeks. I had no bowel control. The pain meds didn’t work. I couldn’t eat or sleep. I threw up constantly, even if I hadn't eaten anything at all. I had to use a walker just to get to the bathroom, and I usually didn't make it in time.

It was a hospital stay, in other words, but going home was worse in some ways. I had to camp downstairs on the pullout bed – couldn't do stairs, could not even get to the bathroom under my own steam. Having to use a walker made me believe I was now officially in Old Ladyhood. Or was it worse than that?

Since then it’s been one test, one specialist, one procedure after another. I thought I’d be out of the woods by now, but no. The surgeon revealed that had they not removed the diseased tissue, it almost certainly would have turned cancerous (that “underlying malignancy”) within  a year. I really didn’t feel much better, and had it not been for uplifting visits from my grandchildren (bearing flowers, handmade cards and even Purdy’s chocolates), I don’t know how I would have gotten through it. Like angels, they descended on the house with cheery messages, sitting on the pullout bed and gossiping and just being kids. I wanted to join them, as they were clearly in  the land of the living.

But much of the time I felt suicidal, I really did, and my poor 80-year-old husband had to wait on me hand and foot, which with his own mobility problems he could barely manage. I wasn’t cheerful. I kept saying unacceptable things like, “I think I’m going to DIE!” This went on for weeks and weeks. At a followup appointment, the surgeon told me that full recovery might take six months to a year.

Since then, this has actually come to be good news, giving me more time to feel rotten without worrying that I might never recover.

There were so many low points and bizarre happenings. “They” found a spot on my lung during a supposedly routine x-ray, which made me wonder if I had somehow become tubercular. They did more blood tests, and kept finding more and more things wrong.

The spot on my lung was just the beginning. My kidneys were out of whack, there was something wrong with my thyroid gland, and I had to see a hematologist (blood  doctor? Much as I love Dracula, this was not good news.) I had an ultrasound, both kidneys and thyroid, leaving me bruised and worried. I had to wonder: am I really that messed up, or is all this being done out of an abundance of caution (or because I’m 71)?

Bits of traumatic memory from the hospital keep repeating in my head, and in my dreams: being rushed down a dark hallway on a gurney; being told I needed an emergency blood transfusion (!); having a nurse lean over me and saying, “Let’s hope this is the turning point.” Having a disgusting nasal tube shoved down into my stomach for days on end, so my intestines could have a "nice rest".Then another medical person came in and talked to me about my lung, but it made no sense to me at all. My LUNG?

But the worst of the worst of the worst was when they showed me how to use a colostomy bag. Yes. It got that bad.

I have never had serious  surgery in my life, and am wondering, if I need to go through all this again, if it might be better if I just died. I have slowly gotten more  and more of myself back, but since I already had severe arthritis in my spine and hip (on the right side, of course, where the surgery took place), osteoporosis, and – worst of all – sciatica, I'm still not exactly comfortable in my own skin. And lying flat on my back for weeks on end put pressure on the worst possible place, thus activating these various sources of agony as never before.

So where am I now? I wasn’t going to “share” much of this, as nothing is more tiresome than an old person going on and on about their surgical nightmares. But for God’s sake, why do I have this ability to write so well (and hey, if I didn’t think I wrote well, why would I have devoted my life to it?) – is it just  for entertainment, or is it there to save my life in a while ‘nother way?

So this is a more detailed account, which I do not think anyone will be interested in reading anyway. Why do I bother? I”ve been carrying all this around for eight months, and trying to minimize the ordeal for the sake of my worried family. I’m no longer screaming at my poor  husband, and he’s no longer having to carry trays of food to me or help me out of bed so I can use the walker. I no longer need to wear Depends so I won’t crap all over myself. But how am I spiritually? Emotionally?

Changed, changed utterly, as Yeats used to say. I don’t know where I am, these days, as suddenly everything is "different". I lost ten pounds during this whole ordeal, and – realizing if I got sick again my weight might plummet dangerously – I set myself the task of gaining it back. THAT was another weird thing in itself. All my life I have fought my weight, thinking I was obese at 130 pounds (and brainwashed by a culture that was pre-body-positivity and horribly obsessed with being thin). I had to force myself to eat, because nausea was one of the most  debilitating things I was facing. And I had to flip everything over, and everything I had tried to do for my entire life had to be reversed so that I could GAIN weight. No, HAVE the candy! HAVE the chips! Whatever would make me fatter. (As my idol Weird Al would say: "Eat it! Just eat it!")

It was Bizarro-land, in so  many ways, a chronically-well person having to live in the Land of the Sick. Though I appear to have dodged the cancer bullet, there are no guarantees, given how my kidneys, thyroid and blood seem to still be out of whack. And if cancer WAS brewing in my colon, it could recur, and this  time I really WOULD need the colostomy bag. Why else would they have shown me how to use it?

I don’t want to edit this or add clever pictures or whatever I usually do. I probably shouldn’t post it at all, but I am beginning to see why old people talk about their medical ordeals. They’re lonely, and they’re scared, and they wonder what sort of macabre death scene they may be heading towards.

One of the worst things about getting old, for me, has been watching as my most cherished loved ones are taken from me, one by one. FOUR close friends died in the space of two years: cancer, stroke, suicide. My sister-in-law, always in the full bloom of health, died horribly of cancer and was down to 80 pounds at the end. I will never see these people again, and I can’t just run out and “make new friends”. It was hard enough feeding and nurturing these relationships over decades, but trying to start all over again seems impossible.

What keeps me going now is my spirituality, but it is nothing like what I experienced before. My "god" is the life force itself, manifested by nature in all its multifaceted glory, particularly in the form of birds. Not just the backyard variety, but in tiny ducklings peeping and cheeping, Canada geese hissing at me, and a glorious blue heron, its enormous wingspan owning the sky. All of which I saw just this afternoon. By the way, Sky Daddy, as he is sometimes called, is no longer my guiding force, and any thought of attending a church makes me shudder. I’ll be there soon enough at my memorial service.

And, by the way, as I lay flat on my back on the pullout bed, I planned my memorial down to the location (the dock at Burnaby Lake, where the birds are at their most sublime) and the songs I wanted (three of Bob Dylan's spirituals: Death is  Not the End, Every Grain of Sand, and I’ve Made up my Mind to Give Myself to You). At one point, half in a fever dream, I became convinced no one cared about me, nor had anyone ever cared about me in any meaningful way at all. This anguish just came up out of nowhere and overwhelmed me. And at  one point I wrote  a suicide note before tearing it up, not wanting to upset the family.

I wish I could  share better news, and today went OK, so if today goes OK, I have to be content with that.  And that’s about it, that’s the report to date. I can coast a bit  now, until I have more surgery (thyroid biopsy) in October. Then the hemotologist, no doubt wrapped in a Dracula cape like Bela Lugosi.

Can I breathe now? I’d better keep  going, and not look  back – because something might be gaining on me.

(The photo is a shot of  me at eight years old, on vacation at Bondi resort in Muskoka, with a baby kingbird perched on my finger. I have no idea how I got a wild bird to stay on my hand! This image was the cover photo for my second novel, Mallory.)

THE COMPLEAT BEATLES (I haven't seen this in years!)

This documentary went underground for a very long time. Then there were just pieces of it floating around on YouTube, with Part 3 and Part 7 missing, always holes in it, perhaps due to copyright and perhaps not. That's YouTube for you, with whom I have a love-hate relationship. I finally had to suck it up and BUY YouTube, because my old ad-blocker suddenly stopped working, and the new one didn't work worth a shit. I guess everything costs now, but it still made me wince to pony up nearly $150.00  for a year ad-free.

I've been neglecting this blog for weeks, if not months now, having survived and scraped through very serious abdominal surgery. For the past four months, my energy, appetite, will to live, etc. have all been stretched as far as they could go, or farther. There were a few moments in hospital when I realized I could die from this. Weeks, months of recovery later, I see the surgeon for a checkup, and she informs me that if they had not removed that section of my colon, there was an 80% chance of it becoming cancerous. Almost certain, which is why I was fast-tracked from that first ER visit in November. Though I dodged the bullet this time, I suppose such a thing could return, and next time I might not be so lucky (IF that's what it was). 

I'm not used to terrible health, or having to put my life on hold for four months. It's sobering and terrifying. Mortality was staring me in the face, and even now, when I go to bed at night a wave of fear breaks over me - the fear that this is the end, that I will never wake up again. 

The scars are mostly mental, and though the surgeon was nice and helpful today, what I've had to go through seems to stand apart from any outside help. Something inside me, some powerful healing force, had to be activated even to get this far, with my digestive system completely reconfigured. Given how radical the rearrangement was, I'm doing remarkably well with things like eating and eliminating. But it doesn't mean attacking my meals with any great zeal. I lost a lot of weight after I got home from the hospital, and I've now joined the Eight Pounds Club - my husband has not yet regained what HE lost when he had abdominal surgery nearly a year ago, and my son Jeff was sick and unable to eat for weeks. 

We all need to get fattened up.

I longed for the simplest things when I lay on my back in that dreadful place for 2 weeks (originally supposed to be closer to 2 days). I wanted to go outside. I wanted to walk beside Como  Lake or the duck park or the lagoon, or even just sit beside the water. I wanted to play with my doll collections, just enjoy them. I wanted to spend some fun times with the grandkids. A recurrent image came into my head: standing on the dock at Burnaby Lake, my favorite place in the whole world, with red-winged blackbirds swooping down to eat out of my hand.

These things seemed light-years away, and very often I was convinced I would never experience them again. But somehow these simple pleasures have slowly crept back into my life, When Erica and Lauren and Jeff came over the evening of my birthday, bearing flowers, a cake, hugs and kisses, it brought me back to life and made me realize why I am here in the first place.

When I became a grandmother for the first time, I had just gotten out of a psych facility due to the most horrific manic episode I ever had, or ever hope to have. But something happened after that death of the soul. I did not merely realize that love is the most important thing - I became love, I moved forward into a way of love I had never know. 

Those new lives, a grandchild born each year for four years, kept me here on earth, and though I am not as close to Caitlin and Ryan as I'd like to be, the others have been an absolute Godsend. I didn't need to strive for this, to do anything in particular, to "try". It was all like breathing, and for the first time in many years I was actually having fun. 

"Fun is the one thing that money can't buy."

Something inside that was always denied, for so many years. . . 

So here, today, I watch my Beatles show after 20+ years, and though I am physically tired and know I have weeks or months left in my recovery, I feel in one piece again. I dodged a bullet, I guess, or at least for now. But a cancer scare makes you wonder about another one, if it might just recur.  

Right now I have to eat, even when I don't feel like eating, because the eight-pound loss isn't sitting well on me - my clothes are falling off, my arms and legs withered. I feel my age, or beyond it rather. I have spinal problems I haven't even thought about yet, and my eyesight is terrible, also needing surgery. How much time is left? Am I really wearing down this quickly, and what will come next?

Gut feelings (a sort of postscript)

 

And as a sort of postscript to my non-review of the Dylan biopic, yes, I've been struggling, and no, no one is listening, just like those whisperers in Dylan's song drowned out by a chorus of howls. On New Years Eve, I will be having the most festive CT scan of my life, and a few days after that I have to have a sort of bullseye painted on my belly so they can tell where my colon leaves off and the rest of me begins. (Actually, it's in case they have to remove the whole thing.) They will draw my blood and analyze it, and they will listen to my heart with its odd skipping rhythm. Then on Ukrainian Christmas, I will go under the knife, or whatever it is they use these days.

I had to tell myself today, really just tell myself, look, you're not gonna die. This won't kill you, it will merely test you. Maybe more severely than I have ever been tested, in spite of near-fatal alcoholism and one mental breakdown after another over a lifetime. I actually got into such a deep slump spiritually that I was sure no one would care or even notice that I had died, that I had no legacy, that all I had done for my loved ones was for naught and they would just carry on as if I had never existed.

I couldn't go on that way, so as usual I needed some Dylan to boost me up, or at least get me walking again, in some direction. Any direction. Not sure what happened, but I have gained purchase a bit, and no longer am quite so sure I'll die on the table and that will be that, the end of everything.

It's weird how cliched things actually do happen, such as your life passing before your eyes, and all sorts of odd memories are popping up and replaying themselves, not all of them very good or bad, just neutral things. But the playlist of Dylan songs I am quite literally compiling for my memorial service (if I even have one) is not so neutral. I have taken this dress rehearsal for my own death as an alarming sign, and this has caused me to plunge around mentally like a deer in a forest fire, not knowing which way to run.

There is always something apocalyptic about Bob's most comforting songs. "Death is Not the End" is a nice little spiritual, with a women's chorus singing "Lawd, Lawd", but one verse proclaims:
"When the cities are on fire with the burning flesh of men

Just remember that death is not the end." 

Or should I listen to "My Own Version of You"? 
"All through the summers, into January

I've been visiting morgues and monasteries

Looking for the necessary body parts

Limbs and livers and brains and hearts."

Good old Bob! Aren't you pleased with the way he has mellowed? But perhaps this song is appropriate for someone whose literal guts are about to be compromised. Is that why I feel so violated? Or whatever this is. It's a good thing no one reads this, or so I tell myself, because it's about the least-festive thing you can read at this time of year. 

But it's been a weird Christmas, a weird end-of-year, and I keep trying to focus on walking the dock at Burnaby Lake, blackbirds eating out of my hand, wild geese exploding in formation right over my head at Blakeburn Lagoon, all the simple, blazingly lifeward things that feed me and keep me whole, if that's the right word. I won't be whole after this, in fact I will be literally gutted, but will it matter, is it like having your tonsils out, I wonder? Can I do without that part of me? I guess we'll see, but until then, keeping the lights turned on in my mind is the biggest task I have ever had to face.

My Own Version of You

All through the summers into January

I’ve been visiting morgues and monasteries
Looking for the necessary body parts
Limbs and livers and brains and hearts

I want to bring someone to life - is what I want to do
I want to create my own version of you

It must be the winter of my discontent
I wish you’d taken me with you wherever you went
They talk all night - they talk all day
Not for a second do I believe what they say

I want to bring someone to life - someone I’ve never seen
You know what I mean - you know exactly what I mean

I’ll take the Scarface Pacino and the Godfather Brando
Mix ‘em up in a tank and get a robot commando
If I do it up right and put the head on straight
I’ll be saved by the creature that I create

I get blood from a cactus - gunpowder from ice
I don’t gamble with cards and I don’t shoot no dice
Can you look in my face with your sightless eye
Can you cross your heart and hope to die

I’ll bring someone to life - someone for real
Someone who feels the way that I feel

I study Sanskrit and Arabic to improve my mind
I want to do things for the benefit of all mankind
I say to the willow tree - don’t weep for me
I’m saying the hell with all things that used to be

I get into trouble and I hit the wall
No place to turn - no place at all
I pick a number between one and two
And I ask myself what would Julius Caesar do

I’ll bring someone to life - in more ways than one
Don’t matter how long it takes - it’ll be done when it’s done

I’m gonna make you play the piano like Leon Russell
Like Liberace - like St. John the Apostle
Play every number that I can play
I’ll see you baby on Judgement Day

After midnight if you still want to meet
I’ll be at the Black Horse Tavern on Armageddon Street
Two doors down, not that far to walk
I’ll hear your footsteps - you won’t have to knock

I’ll bring someone to life - balance the scales
I’m not gonna get involved in any insignificant details

You can bring it to St. Peter - you can bring it to Jerome
You can move it on over - bring it all the way home
Bring it to the corner where the children play
You can bring it to me on a silver tray

I’ll bring someone to life - spare no expense
Do it with decency and common sense

Can you tell me what it means to be or not to be
You won’t get away with fooling me
Can you help me walk that moonlight mile
Can you give me the blessings of your smile

I want to bring someone to life - use all my powers
Do it in the dark in the wee small hours

I can see the history of the whole human race
It’s all right there - its carved into your face
Should I break it all down - should I fall on my knees
Is there light at the end of the tunnel - can you tell me please

Stand over there by the Cypress tree
Where the Trojan women and children were sold into slavery
Long ago before the First Crusade
Way back before England or America were made

Step right into the burning hell
Where some of the best known enemies of mankind dwell
Mister Freud with his dreams and Mister Marx with his axe
See the rawhide lash rip the skin off their backs

You got the right spirit - you can feel it you can hear it
You got what they call the immortal spirit
You can feel it all night you can feel it in the morn
Creeps into your body the day you are born

One strike of lightning is all that I need
And a blast of ‘lectricity that runs at top speed
Show me your ribs - I’ll stick in the knife
I’m gonna jump start my creation to life

I want to bring someone to life - turn back the years
Do it with laughter - do it with tears  

        

I don't often say these things. . . (but today I will)

I don't often put a lot of personal stuff on this blog, because no one reads my posts anyway except random people from New Zealand who leave comments 12 years after I posted them. I am exhausted and frazzled and worn out after a second bout of having to wait on my husband hand and foot (literally, feed him and take his shoes off for him) after relatively minor surgery, and he will be having another round of it soon. 

What is hurtful is the lack of acknowledgement of what I am doing. I quite literally have to take his temperature, help him to the bathroom, badger him to take his meds, get past his crankiness when he needs to eat, etc. etc. I went through all this during his first hospitalization, when the whole family hopped to and saw that his every need was met. It simply amazed me how everyone came together to serve him, which was far from the case when I used to be hospitalized. 

Then I was left completely on my own, no visitors (and as usual, sending a card or flowers to acknowledge the misery I was going through made as much sense to everyone as sending me a dead carp. It just wasn't done - everyone knew that!) Even discussing it was off the table and not to be spoken of. Had it been ME on that operating table, the family response would not have been the same at all. This I know for a fact. But my illnesses weren't counted as real anyway, as I just should have pulled up my socks and carried on. Which I did, with little or no help to crawl out of a black pit of annihilating depression. And for reasons that I will never understand, I nearly lost the right to visit my  grandchildren because of the nature of my illness. 

So here is what I, the schmuck who has always been blown off by practically everyone, but especially my nearest and dearest, wrote to hand to him. Haven't done it yet, but I'm on the verge. If everything I do for him is neither needed nor wanted, what on earth has my life been all about? 51 years together should amount to more than that.

If you don't eat, even when you are NOT hungry, you will not get better. If I prepare a plate for you of nutritious food that you might like, which takes time and energy, you can at least keep it beside you for later and not wave me off with a look of dismissal. Please try to be a little bit grateful, even if you don't like or want what I am offering.

I am doing everything I can to help you get better, but I am getting near the end of it. It's all very well to tell me "just stop", but that's not what I signed on for. It's not in my nature NOT to want to look after you. You should know by now that I am a nurturer, and I do not feel it would be fair to you to just stop. But it is wearing me down when I see the lack of appreciation.

I walked a long time in heat and discomfort and pain today, BECAUSE I wanted to get things you might like, things that are easy to eat while lying down, and some things to make an actual meal which we have not had since Monday. And then you said there had been no need for me to go to the store anyway. Which meant, "You shouldn't have bothered." So what I did was completely devalued and blown off as unnecessary and unwanted. 

I do these things because I CARE, but I believe I have given far more to this family than they have ever given me, and it is beginning to catch up with me. I think that you should get your own food as far as you can, and I will make an evening meal of real food and you can eat it or not. Please, if I do go the extra mile for you, which I have always done, don't just tell me you didn't need or want it. You did need it, you continue to need it, and I will try to do what I can to maintain my sanity until you are better.