Henry, the Canadian Cancer Society volunteer driver for today, is weaving in and out of traffic like a kamikaze pilot on crack. All the while he is keeping up a funny monologue on the traffic violations he's received in the three years he's been driving patients back and forth to Princess Margaret Hospital. He fights every ticket in court and usually wins because the police officer fails to show up.
Ahead of us a teenage girl has stepped out into the cross walk with her little dog on a thin pink leash. She sees Henry coming and decides to scurry across the road dragging a reluctant pooch behind her.
"It's alright girly," Henry mutters, "No problems. I see you."
I'm in the back seat squeezed in between two women, one of whom has defensively fallen asleep. The other is holding onto the door frame for dear life.
"Don't worry, honey" Henry tells her. "I've never had an accident and I don't plan to start today."
After a while, I stop focusing on the road ahead and survival, and loose myself in the idea of writing a book about my cancer experiences. My first thought is that 90% of the writing is already done. I just have to copy and paste my posts into a manuscript, and add some more personal information about myself.
By its nature, blog posts are episodic and it would take some revision to rework them into something that has the kind of flow a book would need. And I've been using spaces to separate paragraphs, because, I find a solid block of script on the screen a little intimidating. But those spaces eat up a lot of pages in book form. So they would have to go and each paragraph would have to be indented.
Picky, fussy work. Yuck. But doable.
Also the book would require I survive my upcoming surgery because I hate a book with a sad ending, especially if I'm not there to write it.
But if all goes well, I could have a 300 page book ready to go by Christmas.
Anvilcloud has recommended BLURB, a self publishing program. I've already downloaded their software. A sneaky company. The first thing they get you to do is design a cover. Once that's done, well, you just can't help going ahead a writing the darn book. Something that looks that good deserves to be given birth.
Besides, like MemoryKeeper said. What have I got to loose?
Well, $20 maybe. BLURB requires you to actually purchase at least one copy. But it occurs to me that one way I could pay-forward the generosity shown me here at blogger is by donating copies to the PMH Patient Library. The idea appeals to me. Perhaps my experiences can shed a light forward down the dark tunnel that is cancer for some newly diagnosed patient who could use a little encouragement.
Beside me, I notice the woman I thought was sleeping, is actually in tears. Quietly sobbing to herself. I don't think it's Henry's driving that has saddened her.
She notices me noticing her and gives me an embarrassed little smile.
"Hi," I say. "My name is Barry, what's yours?"
Monday, June 29, 2009
Posted by Barry at 6:30 AM
Saturday, June 27, 2009
A week on steroids and I'm feeling much better. My appetite is back and so is my energy level.
Finding myself with an hour to spare between a radiation treatment and an oncologist appointment, and with my work only a short streetcar ride away from the hospital, I decide to stop in for a brief visit. It has been two months already since my last day of work.
As I enter the office on the tenth floor, Cameron greets me at reception and does a surprised double take. Beyond not expecting me to walk in the door, I'm 40 lbs lighter and dressed in a Hawaiian shirt and shorts instead of a business suit. He breaks into a broad smile and a offers me a hearty handshake. And tells me I look great.
"Its the steroids," I laugh.
"We've missed you," he says.
I go past reception into the office and the first person I encounter is Jill. Who also does a double take. Then she embraces me in a warm hug. She's been reading my blog and wants me to know how much it makes her cry. "I love your blog," she smiles.
Carol-Anne gives me a another big embrace and tells me I am a fantastic writer. "You've just got to write a book," she says seriously, making certain I know she means it.
Is everyone at work reading my blog? Good Lord!
Keith shakes my hand with a big grin and tells me how well he thinks I look. "You've got great colour in your face."
"It's the steroids," I tell him. "I like steroids."
Oksana's has been reading my blog too and is concerned about my weight loss. She tells me about the importance of ginger in preventing nausea and has even mailed me an article. When I was first getting ill and on a liquid diet, she had made me up several batches of delicious potato and leek soup.
The staff in the Contact Centre are delighted to see me and all crowd around. They all have been reading my blog and laughing and crying along with my adventures. "You've got to write a book," they say, happy to see me looking so well.
"Can you say Dexamethasone?" I smile. "Steroids are a wonderful thing. I almost feel normal."
Robin wants to tell me how touched she was by my story about my father on Father's Day. How it made her cry, and laugh.
Debbi also wanted a hug, then took two. "What a fantastic writer you are. You so made me cry, when you're not making me laugh. You've just got to turn your blog into a book."
I think of making a steroid joke, but suspect I've over done that already.
I leave to go back to the hospital filled to the brim with hugs and praise and good wishes. Maybe hugs and caring could replace steroids?
Outside the building the sky has turned ugly and as I leave to catch the streetcar back to Princess Margaret Hospital, a deluge of rain falls from the sky. On the streetcar it is standing room only and we all look in a amazement out the window at the sudden storm. Lightening flashes all around us. We are united in a single thought: I hope this is over before my stop.
In my head, my own private version of Mark's Butler and Bagman are deep in argument.
"Listen to those people at work! You've got to write a book!" Bagman is arguing. "You'll make a fortune. Become famous. Talk to literary societies, cancer conferences, maybe even get an appearance on Canada AM. Be interviewed on CBC Radio. Make a freaking fortune!"
"Oh please," Butler counters, "You're just not that good. There are a million writers out there with your talent. And another million who write better than you ever will. You've read their blogs. You've seen their skill with language. And they're struggling to get published."
I picture a discussion with a publisher. He sits in button down pin strip suit at a polished mahogany table, my book unread beneath dry, cold hands.
"Much of a market for books on esophageal cancer, do you think Barry?" he asks. "One of the rarest forms of cancer, isn't it? Rare as in not many people have it?"
"Yes but," I counter brightly, "They all have friends and family."
"Mmmmmm? And what percent of that tiny market actually read a book, do you think?"
The streetcar reaches my stop but the rain is still pelting down and thunder shakes the car to silence. There is a crowd at the backdoor waiting to exit but the people on the bottom step hesitate. Behind them the crowd forces them out into the storm and we all run for the subway entrance. I join them on unexpectedly wobbly legs, clumsily leaping the fast moving puddle at the curb, heavy rain slapping against my face. Then its down into the tunnel under the street. On the other side of College I enter the Hydro building and follow the food court as it stretches along University Avenue. At the end of the building I emerge only a block away from the hospital entrance.
After my radiation treatment, I still have half an hour to wait for my ride home with the Canadian Cancer Society volunteer. So I go to Druxy's for a bowl of soup. One of the few foods I know I can safely eat in public.
But as I take my first spoonful, my throat spasms with sharp pain as if I've just swallowed jagged pieces of glass. I'm stunned, my hand at my throat. Just as I've begun to put on weight this week, I've reached the time of agony. Until now my throat cancer has been a problem due to it blocking the passage of food. At worst, it has been an nagging ache, never sharp severe pain.
But I was told it was likely as the radiation progressed and now it's obviously here. Sadly, I dump the rest of the soup in the garbage. At home I have a prescription for codeine, in liquid form. But not here. Not with me.
No need when I've been having such a good week.
I sigh and trudge out to the lobby, my throat still on fire, to wait for my ride home and for the pain to pass.
Wednesday, June 24, 2009
Alright, I confess, I slept in and this is a repeat of one of my earliest Lindsay posts. I promise next week I will post the verdict on Lindsay and the great Earth Box Caper. But for today, here is one of the earliest introductions to my strangely quirky dog that you may have missed.
The day is warm and Lindsay is especially frisky. Her black coat gleams and she darts about with her tail wagging delightedly, her nose scraping the surface of the snow like a vacuum cleaner sucking up scent.
Suddenly she pauses and stands alert, eyes scanning the pathway ahead of us. Then as I approach, she gives herself a shake and prances off along the path until she vanishes into the distance. Seconds later she comes racing back, dancing excitedly around my feet. Come on slowpoke she's saying, lets get going.
I smile, ruefully.
It is hard to believe Lindsay is crippled with arthritis and wracked with severe pain.
Yet that was the diagnosis from our vet. Until a year ago Lindsay would limp painfully around the house and could often be found huddled in a back room whimpering in agony. For three years I could only take her for short walks around the block, Lindsay limping and whining all the way. It was painful to watch.
She was on a daily dose of aspirin to ease her suffering; but this barely seemed to take the edge off.
And then her arthritis went away. Vanished completely. In a single day.
Within a week of my arthritic mother moving into a retirement home.
Since my father's death, my mother (that's her in the photo above on the day Linda and I brought Lindsay home for the first time) had lived in a granny flat attached to our house. She cared for Lindsay through the day while we were at work. A very independent woman, she cared for the garden, cooked her own meals, had the dog for companion, and limped painfully about her apartment. Her arthritis is so bad she had a knee replaced two years ago and may need surgery on the other. But now at 89 there are other health issues that make that operation unlikely. So she winces painfully and uses a walker to get from place to place.
Had Lindsay been miraculously cured of her arthritis? Or had she been mimicking my mother's behaviour?
The March issue of National Geographic has an article on animal intelligence. The cover star is a boarder collie with a vocabulary of 300 words. Lindsay is an English Springer Spaniel and I have no idea how many words she understands. She's certainly the smartest dog we've ever owned. Knows all the family members by name. Never needs to be talked to in short commands, she's very comfortable with sentences. Although sometimes the simple word "NO" seems a challenge for her.
That our pets have minds and thoughts comes as no surprise to many of us who have spent most of our lives in the company of animals. What is surprising is that it has taken so long for this to gain scientific acceptance. Are we that insecure about our place in the universe that we can’t acknowledge what is right in front of us?
Lindsay plunges back along the trail toward me, her eyes sparkle and there's a smile on her face. I don't think she's a miracle dog. I think she's just trying to be part of the family. Just trying to fit in. As the National Geographic article says, "A dog in a human pack needs to learn to adapt."
Posted by Barry at 7:29 AM
Tuesday, June 23, 2009
There comes a time in the life of any blogger who is facing a protracted and serious illness that he write about the unexpected and life transforming gifts that illness has brought his way. No matter how much that illness has taken and will take, it has also improved the quality of his life in ways that would not have been possible without the illness.
This post began with that intention.
An exercise in gratitude toward a monster.
I wanted to thank those pictured in the collage above who took the time and trouble and expense to act as my companions and drivers on my daily trips back and forth to Princess Margaret Hospital. Who put up with my numbing silence broken only by urgent requests to pull the car over to the verge. Quickly!
I wanted to thank all the commenters on this blog for their love and support. For their graceful words and prayers. For hanging in there with me on this terrible journey. Without this illness I would never have come to know you or the depth of your love and wisdom. Your compassion and your generosity.
I wanted to thank my work for their flowers and cards and frequent expressions of concern. For their genuine shock at discovering I was facing this crisis and for shouldering the burdens of the work I wasn't able to finish.
I wanted to thank my family for their cards and their visits and their phonecalls and their concern and their love. I know it has been as hard on you as it has on me.
I wanted to thank Linda who put her work aside and took on this burden with me. Whose love and patience and grace under fire have been extraordinary. Who lifted at least half this burden from my shoulders and took it upon her own. I've gone from her hunk to her shrunk but I've never had to be her shrink, although she'd been called upon to be mine.
I wanted to talk about the things I've learned about what matters most in life, about the importance of diet and exercise and meditation. About taking time to take care of yourself.
I wanted to thank Lindsay for her concern despite her being suspect in the Great Earth Box Caper. She got me out and walking nearly every day. And when I just couldn't she never complained.
I wanted to thank my doctors for Dexamethasone, a steroid that has brought food and drink and energy back into my life.
I wanted to do all of these things.
But I won't. Because I'm pissed. Pissed off at science.
One of the things I was grateful to this illness for was a return to the weight I carried at age twenty. I've lost 40 pounds since last March. If you didn't know I had cancer you'd think I just spent a year at a health spa. I've lost so much weight I no longer have hypertension. I have the blood pressure of an Olympic Athlete.
But then on the weekend I read the latest research on weight and longevity. "Fat People Live Longer", the new study showed. "Health experts have long warned of the risk of obesity, but a new Japanese study warns that being very skinny is even more dangerous, and that slightly chubby people live longer.
"People who are a little overweight at age 40 live six to seven years longer than very thin people, whose average life expectancy was shorter by some five years than that of obese people, the study found."
I mean, come on, how cruel is that?
Sunday, June 21, 2009
I've never been to the hospital Emergency Ward by ambulance before. I hope I never have to do it again.
A sudden plunge in my blood pressure yesterday morning had Linda phoning 911 and an ambulance rushing to our door. I had taken some blood pressure medication in the correct dosage at the correct time but with a radically thinner body and it caused my blood pressure to drop to 80 over 54. When I tried to stand the room swam. When Linda called our contact at PMH they told her, get him to Emerg.
Skinny as I am now, I still outweigh Linda and she was concerned if I fell she'd never be able to lift me. So I went by ambulance.
Without the sirens.
At the hospital I was triaged and parked in a corridor.
Where I lay with my eyes closed amid the sounds of a hundred voices, the screams of children, the tears of those in pain, the whispers of the worried, the anger of the neglected. The sickness and the pain and the fear.
And I thought of my dad.
His name was Bill and he has been dead for a long time now. My mother remarried after his passing and no longer carries his surname. And after 10 years that husband passed on as well.
But it's my dad I think of on Father's Day.
We had a distant relationship. He never played catch with me. Never taught me basic home repair or car maintainance skills. Never hugged me, except as a show of affection for company. Never talked about his life, or himself. Never talked about me, or my brothers.
He was always there but never engaged with us. Distant.
But he never abused me either. Never neglected any of us. Never hurt my mother. Never failed to provide a home, food or clothing when needed. Never shirked his share of doing the dishes, or cleaning the bathroom or doing laundry. We always got gifts at Christmas and Birthdays and roast beef dinners every Sunday.
He had a great sense of humour and genuinely loved his grandchildren.
It was in researching our family history, long after he had passed, that I learned he was the product of a broken home. His father had deserted the family when my dad was 12 years old and my father had had to quit school and take on three jobs to support his mother and two sisters.
He had never had a father who played catch with him, or taught him basic skills. He had never had a father who showed him how to be a father.
I have far more respect for my father these days than I did when he was alive. And there is much to be sad about that.
On Father's Day.
In the Emergency Department. In a side corridor. Waiting.
Eventually I was seen and tested and released. I returned home 5 hours later where I slept for 10 hours.
And now its a new day. My cancer has cured my hypertension and I have medicine I never have to take again. Its like a little gift. And my daughters will be over and the day will be a special one.
For my father and me.
Saturday, June 20, 2009
The painting no longer has pride of place in our home. It now sits on the floor in the darkest corner of the storage room in our basement, out of sight and usually out of mind. Looks innocent enough, doesn't it? Nothing Dorian Grey about it at all. Not the sort of creepy painting you would normally expect to attract the eerie powers of synchronicity.
For the first twenty years of our marriage it graced the main wall of our livingroom, wherever we happened to be living at the time.
Linda brought it with her first pay from her first job after college. It was painted by Le Roy (pronounced "wha"--not the way Roy Rogers would say it), a Montreal artist whose use of tree limbs for framing and use of very thick oil paints laid on with a pallet knife, intrigued Linda. It would be a fairly expensive purchase and Linda wrestled for days over the decision to commit the funds. But something about the painting spoke to her. Wouldn't let her go.
A fairly large painting, it stands about four feet tall and is three feet wide, including the frame. Its size made it a cumbersome object to cart around whenever we moved.
It was the first thing we hung on our wall in the first home we had ever purchased, in Callander Ontario, about a five hour drive north of Toronto. We had never intended to move to Callendar and would never have gone there if it wasn't required by the job I had at the time.
We did a lot of camping in the early years of our marriage and our favourite place to camp was in the Restoule Provincial Park, about an hours drive west of Callendar. Restoule is one of about 300 Parks run by the Province. It's important you know that or the rest of this story won't seem quite so strange.
One day we were looking through a massive, old book of woodcuttings that had been in my family for many years. The book was called Picturesque Ontario and featured hundreds of scenes from across the Province.
About half way through the book we unexpectedly found our painting or at least the woodcutting Le Roy had obviously used for inspiration. It was called "Two Explorers In Restoule Park".
So, years before we moved to Callendar, years before we had ever heard of Restoule Park, Linda had chosen a painting depicting two explorers walking through a Park she had never heard of at the time, but that would become our favourite place to camp.
But there's more.
Linda's sister is married to a man with family in North Bay, about a 10 minute drive from Callendar. Shirley, a member of that family, came to welcome us to the area. We gave her a tour of our home only to have her stop in astonishment in front of our painting.
"Is that based on the woodcut from Picturesque Ontario?" she asked.
We were surprised anyone beside ourselves had ever heard of Picturesque Ontario.
"You see the man in front," Shirley asked.
Of course we did.
"That's my great grandfather and the guy behind him is my great uncle. They took the artist with them when they were working their trap line back at the turn of the century. He had them pose like that for half an hour."
Odd little world, isn't it?
Posted by Barry at 6:26 AM
Friday, June 19, 2009
Patty and Reggie Girl have organized the Friday Photo Shoot Out asking us to post photos of our local community every Friday. From a handful of participants it has grown into a world wide phenomenon. This week's theme, chosen by Audrey, is METAL.
There are links to many of the Friday Shoot Out participants from literally around the world at the bottom of my left panel. For a comprehensive list see Patty's blog. Maybe you'd like to join us as well and post photos of your community? Click here for everything you need to know to join the Friday Shootout Gang. Next weeks theme is still to be chosen.
I live in Toronto, in the Scarborough area of Toronto, in the West Hill area of Scarborough. So West Hill will be the focus of my photos.
I don't have much to contribute this week, only this one oddity that occurred to me at the last minute, inspired by this weeks metal theme.
My grandfather was a blacksmith, as was his father before him and his father before him, and this photo is the only one we have of him working at his forge.
Kind of a neat picture to have, I think.
For a more thoughtful post and an inspired twist on the theme, you might want to check out my wife's blog HERE
Posted by Barry at 7:49 AM
Thursday, June 18, 2009
Picture a gigantic human hand formed into a claw, the fingers pointing toward you. Now picture a table inserted into the claw with you recumbent upon it, your head toward the palm. The fingers surround you and rotate around you, a different machine at each finger tip. Around and around they go like the barrel of a Gatling gun, only quietly with a Strauss Waltz playing in the background.
It is the middle of my second week of radiation therapy and the radiation therapists have noticed something. The normal procedure has come to an unexpected halt. They've called in their medical consultant who is reviewing the scan they've just taken before continuing with the procedure
"We're just reviewing your scan with the doctor, Barry" a quiet electronic voice tells me. "We will be starting again in a couple of minutes."
So I wait, my arms held behind my head pointing back toward the palm of the machine and my left arm just beginning to ache.
But pain is nothing new these days. I've been through many painful tests and my digestive tract is ever alive with pain. For over a week now we have struggled to get me to keep food and fluids down. Linda has researched and consulted and strategized, but my gag reflex seems to be on a hair trigger, one moment able to tolerate anything, the next sending me running to the washroom to regurgitate over and over and over again. The doctors have given me new anti nausea medication but it seems minimally effective.
It is discouraging. And more than a little frightening.
I have lost over 35 pounds since this all began last March. I'm now down to the weight I was at age 20. And I still have the hard fifth week of treatment to come.
"Alright, we're starting now." the voice says.
The machine begins to hum and the fingers rotate gracefully. Green laser lights run across the ceiling. One of the fingers stops overhead. The machine engages and begins radiating my chest.
Beyond the hum of the machine I can hear the faint but distinct sounds of a rising murmur. It pervades the room. It pervades my head and my soul. It is the murmur of human voices from virtually around the world. Praying. For me. A total stranger. Sending thoughts and energy to me. A total stranger, his chest marked up like a pirate's treasure map, lying in this cool and empty room, listening to Strauss.
If there is a miracle in my life this is it. That bloggers the world over would take the time and energy to keep me in their thoughts and prayers, defies belief.
I picture God in His heaven puzzling at the sound. "Gabriel," He calls. "Who is this Barry all these people are petitioning me about?"
"Never heard of him," says Gabriel. "I'll have to get his file out of the cabinet. And, by the way, we should get these files digitalized some time. Its a miracle we can find anything around here."
Above me the radiation machine hums and the next finger glides into place.
There is no sensation to being radiated. It doesn't hurt in anyway. At least not yet. But it needs to be precise and my chest is marked with tattoos and magic markers including a large "X".
Due to the earlier delay, by now my arms have been above my head for so long that my left arm is dancing with pain. I fight to keep it still. They don't want any movement to distract their aim. And neither do I.
Beyond their prayers and good wishes, Bloggers have sent me books to read. Books that entertained or enlightened them. Or inspired them. Linda and I were even sent hand crafted matching key chains so that even if we are apart, we are still connected. And bloggers have taken the time to leave comments and helpful suggestions. Linda and I read them all with an insatiable hunger looking for new ideas we could try to get me eating and drinking reliably again.
The fingers of the machine glide past me again and in the distance I hear a door open and a radiation therapist appears before me.
"Alright, we're finished. You can let your arms down now," she says. "We noticed a change in your tumor last time that we had to have our medical consultant look at. That was the reason for the delay. He wants us to redo the scan tomorrow with a dying agent to provide more relief and he will forward his findings to your radiation oncologist in time for your meeting on Friday."
"Is that good or bad?" I ask.
"I don't think its anything to be too concerned about," she says.
And I gather my hospital gown around my skinny frame and head back to the changing rooms, back out of the hospital and out into the world. In search of a meal and a drink I can swallow.
Wednesday, June 17, 2009
Two days after this tranquil scene was taken, a dastardly crime took place. The photo above is of Barry's latest hobby, the growing of organic vegetables in a self regulating container: an Earth Box.
He had received the Earth Box joyfully and proceeded to put it together with fewer extraneous parts left over than his brother's new barbecue had produced. He had purchased soil and plants and had even made a proud video of the endeavor.
Then he had settled back in the righteous belief that he could now coast through the upcoming radiation and chemo therapies that awaited him, sure in the knowledge that at the other end, he would be able to walk into his backyard and pluck from his own plant nutritious, fresh tomatoes, peppers and strawberries.
Instead, below is the scene that awaited him two day's later--
The plastic cover had been ripped to shreds, the plants ruthlessly torn from their happy abode, the fertilizer had been EATEN, one tomato plant had been slashed to pieces and the bell pepper plant was missing altogether.
Barry was crushed, devastated, his dreams in tatters.
Who could have done such a horrible thing?
Well, here is one clue. The following is a one minute video of the crime scene including an interview with one of the suspects.
And here is a lineup of the most likely suspects. Please look them over carefully and then submit your verdict.
Let me know who you think is the guilty party.
Barry and the Earth Box to be continued in Part Three--coming soon.
Posted by Barry at 6:20 AM
Monday, June 15, 2009
It is the middle of the night and a disturbance, perceptible only to her, rouses Lindsay to a defensive rage.
I leap out of the bed and find her at the front window barking furiously. One by one I go around the perimeter of the house turning on the powerful outdoor lights. Although, had it been anything human, Lindsay's savage baritone would have sent him running into the next county by now.
I move from room to room but no Jason in hockey mask with butchers knife greets me around any corner. But I do make a surprising discovery.
My own internal Lindsays who have been howling a ceaseless chorus of alarm over my physical condition, have all settled down to sleep. I feel, if not well, at least normal.
Perhaps it's just the adrenaline?
I do an internal audit of my condition. No fever, no cement in my intestines, no acid in my stomach, no pain in my throat, no swamp gas in my brain. No grinding fatigue that sends me into repeated hours of sleep. Could I have just gotten better, just like that. Suddenly.
For days I have retreated into a distant internal cave, seeking some place far enough from pain to be tolerable. Linda has been making determined forays deep into the gloom to find me and with patience and cheerfulness, has been taking my hand and leading me back toward the light.
Only to find that I had retreated down some unexpected and darker side shaft into a new cluster of symptoms.
But now the pains have gone. And I have an appetite. The thought of food no longer repels me. I make myself a cup of tea and Lindsay, who has now settled down, comes to join me.
I wonder what Linda will say if she rises in the morning and comes to seek me in my gloomy cave only to find me completely out of the cave. Making scrambled eggs.
And saying, "Good Morning! Can I fix you some breakfast?"
Sunday, June 14, 2009
I've been three days now without eating after two without drinking. The minute any thing hits my stomach it triggers a violent and repetitious reaction. I have medication to control nausea and a steroid to mimic a sense of wellness.
But they're not much good if you can't swallow them.
Then you just kind of hunker down and do a lot of whimpering.
Linda did manage to get both pills into me yesterday and I felt marginally better. Maybe today will carry that success forward so I'm fit for 5 days of radiation next week.
I'm kind of tired of sleeping. More than tired of whimpering. I miss blogging.
Today I need to put a concerted effort into taking my meds at the right time, eating and drinking more, moving more.
And being more congenial company for Linda.
Wednesday, June 10, 2009
This is not a particularly well made video. It was made just prior to Linda's mothers sudden passing and five days before I started chemo and radiation therapy. Using only the built in mike, my voice is either whispering in the distance or yelling in your ear. There are some clumsy edits and some poorly aimed shots where the action takes place just out of the frame.
But I wanted to show it to you for a couple of reasons. One is to reassure you that I am physically fit, despite having two cancers and loosing about 30 pounds in wieght. Except at meal times I wouldn't know I was ill at all. Indeed, at this point, I think my cures are harder on me than the disease. Yesterday's first radiation therapy, under a weird Swiss army knife contraption with multiple rotating heads, was over in 30 minutes and produced no physical sensations whatsoever.
The second reason is to show off my new hobby, growing organic vegetables in an Earth Box. I will have to see if growing vegetables this way produces the yields shown in other YouTube videos. I will keep you posted on my progress in my first attempt at high tech, low maintainance, organic farming.
But what has this to do with Lindsay. After all this is Wednesday the day I do posts on my little black dog and her waggy tail. Well Lindsay makes a number of guest appearances in this video. Can you count them?
Here is the video:
Posted by Barry at 5:42 AM
Tuesday, June 9, 2009
"No, it's 5 FU," the pretty Indian nurse explained, "Short for Five Fluorouracil your second cancer drug You'll be taking it 22 hours a day everyday this week and I'll be sending it home with you along with this pump."
"5FU." She said.
I looked at the pump and the large bag of clear fluid on the table beside my bed in the Chemotherapy Day Care Centre.
"Did you bring a fanny pack?" the nurse asked.
"No, was I supposed to?"
The nurse shook her head sadly, "They prescribe 5FU and always forget to tell the patients to buy a fanny pack. You'll need one because you're going to be wearing this for the next 22 hours."
She turned to my brother-in-law who had come with me today. "Maybe you could run down and buy one. They sell them at the hospital tuck shop, or if they don't have them there, Staples is just down the block and they sell them as well."
"Sure, no problem," said Steve, getting up from the chair beside the bed.
"It needs to be about this size," the nurse said gesturing with her hands.
Steve nodded and started off on his quest for an FU bag holder.
The Chemo Day Dare Center is a long narrow room on the 2nd floor of Princess Margaret Hospital with beds along each long wall, separated by a hospital curtain for privacy. But from my bed I could see across the room into the bed of everyone across the next wall, where they all sat looking back at me.
I waved. But no one responded. No one was looking like they were having a good time.
My nurse laid out the various bags in her container on the top of my table.
"These are the medications you'll be getting today." she said. They all looked like bags of water in various sizes. "First a saline solution. Then an anti-nausea drug. Then Cisplatin your main cancer drug and finally another saline solution."
Having already implanted a splint in my vein, she hooked me up to the saline solution. "This will take about 40 minutes," she told me.
I settled back in the bed. I had brought "Fugitive Pieces" by Anne Michaels with me to read. It had been given to me by Ruth at the Synch-ro-niz-ing blog and was a very lushly worded tale of Jacob Beer, a wild young survivor of the Nazi Holocaust who struggles to find meaning in the abyss his life had become. I was about 3/4 of the way through and Ruth thought I'd like the book, but instead I loved it.
Forty minutes flew by and the pump beside my bed started ringing. The nurse hurried over to check the bag. Saw there was a little of the fluid left and reprogrammed it for another minute or so. Across the room other pumps were starting to ring and nurses were whirling around resetting the pumps or exchanging bags.
When my pump rang again she replaced the bag with the anti-nausea medication and then Steve was back with the fanny pack, his face wet with sweat.
"The tuck shop was out of them," he explained. So he had gone Staples but they were sold out. They sent him to Roots. Roots sent him to Mike's Work Wearhouse who sent him to the Mountain Canyon Coop. But by now he was half way down to the lake. However they had a variety of fannypacks in all different sizes, but when he went to check out they wouldn't sell one to him.
"You had to be a member," he told me. So he had brought a membership. A long exhausting trip but at least he had found a fannypack.
"Too small" said the nurse as she passed. "It's got to hold the 5FU medication and the pump." She showed him.
Steve wiped his forehead, turned tiredly and trudged back out into the heat of the day mumbling something which sounded somewhat like a shortened version of 5FU.
"Now we come to your cancer drug," the nurse said, changing my bag. "This will take about an hour."
I took out my ipod and opened itunes to Diane Arkenstone and lush music filled my head. I relaxed into it and returned to Jacob Beer. Time passed quickly and Steven eventually staggered back with a larger fannypack. I was switched to a final saline solution.
Then the nurse returned to hooked me up to my 5FU pump which she loaded along with the 5FU bag into the fannypack. She showed me what to do if it ever sprang a leak and when to run to emergency if it ever pulled out of my arm. Then she turned it on.
The compressor started pumping.
FU it said.
"It says FU" I said.
"No it doesn't," said the nurse. "That's just a mechanical noise made by the cmpressor.
"FU," said the pump.
We all laughed.
And my first chemotherapy treatment was done.
Instead of feeling nauseated or fatigued, I left feeling strangely exhilarated. In fact I found I had more energy than I had in days.
Perhaps it was all the water they pumped into me? Or maybe it was the morning of enforced relaxation? As the day wore on I found I had more energy than I had had in days.
Or maybe it was just the funny name of the drug that lifted my spirits?
Monday, June 8, 2009
Not much time for a post today.
It's been a busy weekend meeting with the Undertaker to make arrangements for Linda's mother, discovering we had 48 hours to clear out her room at Extendicare and having to arrange for friends and a truck, meeting with my 90 year old mother to tell her about my cancer and treatment and why I won't be in to see her as often this summer, having family stop by to pay their condolences and see how we are doing, answering the telephone which rings every half hour or so and getting prepared for today's first chemo treatment.
But we did it. All of it.
My brother-in-law Steve is coming with me for support during my first chemo treatment and we are catching the early train to be there for 8:30. Linda is going back into work today to wrap up some teaching issues that are outstanding. She will come with me Tuesday through Thursday and my brother John will come with me on Friday.
Now I need to take a raft of pills, get washed and dressed and get out of here.
I have a train to catch.
Saturday, June 6, 2009
The day after Linda's mother's death, we are seated on an early morning GO Train rushing into the heart of the City. Neither of us had slept well the night before and we felt as if we'd been hit by a Mack truck then knocked onto the track of a freight train. Only, perhaps, not quite as good as that.
However, after a month of delays in getting started on my treatment for a very aggressive esophageal cancer, we couldn't risk anything that would cause a further delay. Like postponing today's planning session with our medical and radiation oncologists.
And so we struggled to stay awake as the train carried us away from the fields and green lawns of the suburbs and into the gray depths of towering office buildings. Finally the train slowed as it approached Union Station. The Station had been built by my great grandfather William. Well, not all by himself, but he was one of the architects who worked on its design. So I feel a kind of personal connection to the building.
Our first appointment is with the perky little radiation oncologist who confirmed that my treatment would be beginning this coming Tuesday. She is very pleased with the plan for radiation that she has developed which will be very targeted and minimize the chance of accidentally radiating my lungs. Which, I'm informed, is something I really don't want to happen. Radiation will take an hour and be conducted five days a week over a five week period. I will be in considerable pain by the end and she warned me not to try toughing the pain out. Tell her when it starts to hurt because it will only get worse and she has some very effective medications that will help.
Then we're off to see our medical oncologist. We book in with her receptionist and sit in front of a large screen TV to wait our turn. The News is filled with stories of automobile crashes and victims being rushed to hospital with no vital signs.
A woman in a white coat who is not our oncologist calls our name and proceeds us to an examining room. We follow her wearily. She asks how I'm feeling and I tell her I've had better days. "Harmuph," she says dismissively, as she leads us into the room. "Wait here," she says, leaving through a back door.
"Who was that?" Linda asks. But I have no idea. So we wait. Half an hour goes by.
"Have they forgotten us?" Linda asks.
We can hear muffled voices in discussion behind the rear door of the room. Another fifteen minutes goes by.
Then our oncologist rushes in with apologies. She has been in last minute discussions with the pathologist about my bone marrow diagnosis and is worried because, while the pathologist is convinced I have a low level lymphoma in addition to my esophageal cancer, he was unable to make a definitive diagnosis.
There is a very wide range of bone marrow disorders and they haven't narrowed it down to a specific disease. I will have to have another bone marrow aspiration on top of chemo and radiation next Wednesday and have it examined by a Hematological oncologist. She apologizes in advance and assures me this won't in anyway delay the start of treatment.
She tunes into Linda's fatigue and I explain about Linda's mother's passing away last night. She offers her condolences and then rushes off to get us a treatment schedule.
The "Harmuph" lady sticks her head in the back door and tells us she is sorry. "Not," she tells us, "Sorry for keeping us waiting, but for Linda's loss."
And then she is gone.
"Who is that?" Linda asks again.
Ten minutes later the scary "Harumph Lady" is back, with papers in her hand. Our oncologist has asked her to review my treatment schedule with us. She sits at the table beside me and begins writing in the Notes section at the back of a pamphlet. She looks up at me as she's writing, her face very close to mine. Her eyes boring into mine. There are things I am going to have to do, and I'm going to have to do them right or I'll be in trouble with her, she tells me. I am a very sick man and chemo is a very serious business. If I don't pay attention and do everything she says I could die.
Chemo attacks the rapidly growing cells of the body and the most rapidly growing body cells are in the filthiest place in the body, the human mouth. "So you are going to pay special attention to keeping your mouth clean. Brush your teeth for a minute or two after every meal, floss and rinse with bicarbonate of soda. On top of that you will buy a large bottle of Club Soda and rinse your mouth with it every time you go pee throughout the day."
Her scary eyes peer deep into my soul from ten inches away. And, she tells me, I will wash my hand thoroughly before I pee and immediately after I pee. She searches my soul for any sign of disagreement. After her search she is not convinced but decides not to press the issue further.
And if I have any sign of a fever over 38C I will go to my local Emergency department immediately and tell them I'm receiving chemo. I will do this immediately or I will die. She stares at me intently to ensure I know what dying means. Evidently I do and she turns her attention to Linda. "But," she tells Linda, "You will not pester this man by taking his temperature every half hour. Do you understand?"
The lady is scaring the crap out of us so, of course, she next turns to poop. She is giving me a prescription for a stool softener and for a laxative. She likes people to be a little bit loose, during chemo and gives precise directions for what pills to take on what days under what conditions. And writes them in her book.
And if I have any trouble of any kind I am to call her immediately or go immediately to Emergency. She writes her name and phone number on the list.
Okay, we're done, she tells us and leaves through the back door. The minute she's gone, we hear a bunch of people yelling "Surprise!" and bursting out into singing "Happy Birthday!" to her.
"Who was that?" Linda asks again.
I look at her name and tell Linda who turns pale. "I know her," she tells me. "I grew up with her. We went through school together. Our parents built Iondale United Church together."
"You know the scary doctor?" I ask in amazement.
"Heidi," Linda tells me. "I haven't seen her in forty years. But it's Heidi!"
We stop at the desk as we're leaving and ask to speak with the scary doctor again. She comes out with an embarrassed look. "You probably heard the singing," she says. "It's my sixtieth birthday today."
Linda tells Heidi her maiden name and mentions Iondale and suddenly Linda is hugging the scary doctor and suddenly the two of them are lost in discussions of old times.
And the scary doctor is not quite so scary anymore.
I took a batch of pictures for the Friday Shootout and it is a shame to waste them. I will be receiving radiation treatment every day for five weeks and chemo everyday for the first and last weeks of that schedule, so I may not get in many more Friday shootouts for a while.
The theme this week was open so I chose "Public Art" and here is a little slide show of what I came up with.
Friday, June 5, 2009
Peacefully in her sleep at 90 years of age, Stuart Crawford passed away at 7 pm on Thursday June 4th after a brief illness.
"Stuart" was Linda's mother's only given name, the fifth woman in five generations to be called Stuart. As you might expect it led to many, sometimes, humorous confusions over her life time. Pointedly, however, she did not name either of her own two daughters "Stuart".
A soldier, a baker, a glass engraver; secretary to the Executive Chief of the Royal York Hotel, Payroll Manager at Canada Trust; artist; mother of Margaret, Don, Linda and Steve, world traveler; she out lived two husbands and had a very full and loving life.
Stuart had been rushed to the Emergency department at Centenary Hospital last week with acute kidney failure. Linda and I spent much of the three days she was in the hospital fighting to insure she got the attention she required among the welter of automobile accident, industrial accident, young heart attack victims and the victims of physical abuse. But there was little the hospital could do for her beyond hydrating her and providing what little passes for physical comfort in a busy emergency ward.
She was returned to her nursing home last Friday where she was visited by all the members of her family, which cheered her greatly. Linda and I, along with my brother Keith and his wife, had visited her yesterday afternoon and she seemed very peaceful. The nurses commented that she was doing well and any crisis would be days away and, being the fighter she was, that she could even rally.
Sadly this was not to be the case.
Linda and I are keeping my appointment with two of my oncologists at Princess Margaret Hospital today because the road getting to this point has been too arduous, and my cancer too aggressive, for us to delay the meeting. I will be getting full details of my diagnosis and a treatment schedule.
My daughter Kathy offered to come with me in Linda's place, but Linda is anxious to hear what the oncologists have to say directly.
I will publish my Friday Shootout tomorrow.
Posted by Barry at 4:47 AM
Wednesday, June 3, 2009
I usually try to reserve Wednesdays for stories about Lindsay, but hospital scheduling is no respecter of the protocol of little dogs or blogging schedules, and delivered its news by phone late yesterday. Lindsay, being gracious to a fault, has kindly waved her place in the sun so that I can bring you news of an important development in my condition.
Well, alright, she didn't wave her place in the sun, she's gone out in the sun for a swim at the beach and is telling me not to be long.
So I'll keep this short.
It doesn't happen often, but in my case it appears that having two cancers is much better than having one.
The pathologist confirmed yesterday afternoon that I do have a second primary cancer, a very low grade lymphoma, in my right hip. Had it been a spread of my esophageal cancer it would have been much more serious, and potentially fatal. The stage of my esophageal cancer and of the lymphoma are so early that both are considered curable, not just treatable.
So I should be around for a few years yet.
However having two cancers means a change in my treatment regimen. I will be starting right off with both chemo and radiation on the same day, next Tuesday. I don't have all the details yet but I am meeting with both the radiation oncologist and the medical oncologist on Friday morning to get a full explanation of my condition and the new course of treatment. Both the radiation and the drugs I will be given will change so that both cancers can be addressed simultaneously.
I recently began to have trouble swallowing again but I'm assured the treatments should shrink the cancers in my throat and eating will become progressively easier. For which I am thankful.
Of course the chemo could make me so nauseous I won't feel like eating, but that's another story.
In the meantime I'm back to a strictly liquid diet of soups, smoothies and Ensure. And water. Lots of water.
I should have much more information after my meeting with the two oncologists on Friday morning.
They tell me I'm a very lucky man, that not one but two cancers have been caught at such an improbably early stage.
Now please excuse me, I have a little dog waiting for me to take my place in the sun and go frolic on the beach.
Monday, June 1, 2009
The phone hasn't rung, but it will ring today.
It has been a week since I underwent a bone marrow aspiration that will determine, finally, if I now also have cancer in my right hip, a discovery that could change the course of my treatment. That could move my diagnosis from "curable" to "treatable". Not a journey I want to take.
It has been a week without feedback. Or there has been feedback but we were out of the house focused on Linda's mother's emergency hospitalization for severe kidney failure and no message was left on our voice mail. Amazingly, Linda's mother is now back in her own room at her nursing home and showing clear signs of improvement. Both our daughters and their families were there for a visit yesterday which cheered her greatly. Especially holding the new baby.
After the visit we took the family out to dinner where I made a discouraging discovery; but not one that surprised me. My throat has closed up again and I am no longer able to reliably tolerate solid foods. It could be the stress of the past five days which has been considerable. I've lost 30 lbs. since my diagnosis and don't need to loose more. I've known all along that the throat dilatation was temporary but had hoped it would last until I was well into chemo, which would shrink my tumor and allow me to continue to eat semi normally.
But I've faced a month of delays as test after test showed signs of anomalous results and now I've just run out of time.
I need the phone call today with word that a firm decision has been made on treatment. I will call them this morning at 9 o'clock and continue to call them until I hear.
What ever the decision, I will let you know.
The photo above shows Linda and I at a recent workshop with Dr. Robert Buckman, oncologist from Princess Margaret Hospital with his book "Cancer Is A Word Not A Sentence."
I don't want a sentence, just a word about treatment would do fine.
SLIGHT UPDATE at 10:00 am
With my oncologist away until June 2nd I managed to finally reach the Nurse who is heading up my research study. She was onto the lab to find out what was keeping my results and they have promised to have them ready by this afternoon (cultures taking their own sweet time to grow).
Once she has received the results she will email them to the oncologist who will review them and get back to her. The nurse is keeping my chemo treatment date open tomorrow excepting a negative (negative is good) result from the lab. But in either case she will let me know as soon as she has heard back from the doctor.
In the meantime I just have to continue being a patient patient.
As Linda says, now its just time for me to breathe.
FINAL UPDATE at 4:30 pm
Having not heard back, I phoned the hospital again.
The final results are not in yet from the Pathologist and won't be, not until at least tomorrow. So Chemo will have to be delayed, once again, because the pathologist suspects, based on his preliminary results, that I have the very beginnings of lymphoma. That they have uncovered the very birth of a lymphoma, if you like, hence the very strangeness of the various test results. And Lymphoma would mean that I have two primary cancers, not the metastasizing of my esophageal cancer to another part of my body.
So if there is good news in this, it is that. If the esophageal cancer had spread it would no longer be curable. They could treat it and prolong my life for a while, but they would be unlikely to defeat it.
Lymphoma, on the other hand, is curable, especially the extremely low grade lymphoma I might have.
So I may have two curable primary cancers. However, having lymphoma will likely mean changing the kind of chemo I will be receiving, or its duration. That is a decision the oncologist will have to make after the final pathologist report arrives tomorrow.
So no chemotherapy tomorrow, but once they've decided on a course of treatment, they will do their best to get it started later this week.
Enough time has been spent in diagnosis already. Of course, assuming they've discovered a second primary cancer, my having gone through all these additional tests will have proven worthwhile. I won't have gone through esophageal cancer treatment, only to find out in a year that I have a lymphoma to deal with.
Both can now be cured together.
Makes me wonder what I've done or where I've been in my life to have developed two primary cancers simultaneously? Now that's something to ponder.