Despite a couple of nice things happening, it has been a miserable week.
And I'm not much looking forward to this one either.
I look back and marvel at the rapidity of my decline. It seems that everyday brings a noticeable increase in the intensity of my symptoms or the erosion of my strength. Linda has become so alarmed she has taken the day off work today, no longer certain I can be left on my own.
Tomorrow I have a visit with the Medical Oncologist and Thursday I begin a new cycle of chemo. On Monday the 7th I have my first appointment with Palliative Care and the next day I finally have an appointment to drain my lungs of the fluid that is nearly crippling me.
Everyday pulls me further from the series of radiation treatments I have just completed, but whose cumulative side effects will continue to build for a some days yet.
Poor Linda, my conversations become entirely focused on my own internal condition, my aches and coughing, wheezing, panting, crushing fatigue, bloating, diarrhea, pain and sorrow.
I am miserable company. Even Lindsay will attest to that.
I have never gone into chemo from such a low ebb and know chemo will add its own layer of side effects.
But it is the hope I cling to for some return to normalcy.
Monday, May 31, 2010
Posted by Barry at 5:46 AM
Sunday, May 30, 2010
I see today that I was so excited by Anvils generosity in turning the sheet music of my ancestor into actual music, that the images I chose to accompany the video I posted yesterday were somewhat confusing.
So let me try to straighten out a couple of points.
The 19 year old Alexander Simpson who lost his life in WW I was the son of the man who wrote the waltz. His father, the Alexander Simpson who was the composer of the waltz, lived a good long life living well into his 80's.
The Scottish tradition is to name the oldest son after the father, so there are always two males with the same name in every family--which makes genealogy work very interesting and challenging.
Margaret, the woman to the far right in the family portrait that appears briefly on the screen, is the daughter for whose wedding the waltz was written.
I'm glad so many enjoyed hearing the music as much as I did. While it will never make the hit parade, it is pleasant little tune. It was viewed 64 times yesterday.
Posted by Barry at 5:05 AM
Saturday, May 29, 2010
Last week I published a short history of my great grandfather's step brother, Alexander Simpson, poet and musician. The above death cards are for his wife Jane and oldest son Alex, who was killed in WWI.
A noted violinist as well as composer, Alexander composed a waltz for each of his children's weddings and sheet music for one of those waltzes had come down to me. Not being a musician in any way I had often wondered what those waltzes sounded like.
Now I know.
Last night I received this email from fellow blogger ANVILCLOUD:
It's AC here. Last Saturday you posted about Alexander Simpson. You also posted a copy of his composition, Wedding Waltz, and said you had never heard it.
Well, I thought I could help a bit by transposing it into ABC notation and generating computer music. I am attaching an MP3 of a computer trying to sound like a violin. It's computer generated and then recorded back from the computer speakers, so you'll hear some hissing. Sorry about that.
The printed copy was not terribly clear, and I was squinting, so if you wish to compare my version of the score with the original and see if there are errors, I can make necessary changes.
I also hope that you are able to enjoy your weekend somewhat. What a miserable time you are having. I feel for you. Your troubles make mine seem very small. In fact, they make my life seem trouble free. I admire your heroic spirit, Barry.
Using Anvil's work I have hastily put together the following little video. The first time Alexander's Wedding Waltz has been heard in 100 years.
Hope you enjoy it.
To see posts from other Sepia Saturday members (or to become one yourself) CLICK HERE
Posted by Barry at 6:30 AM
Friday, May 28, 2010
This weeks My Home Town Shoot Out is Local Heroes. To see Linda and my contribution please CLICK HERE
It turns out they are not always who you might think.
Posted by Barry at 6:12 AM
Thursday, May 27, 2010
Once Upon A Time I did it on my own. All of it.
In fact, most of it I did on my own only a month or so ago.
Now, it seems, it takes an entire community, a veritable industry of people, to keep me stable. To maintain, as they all eventually end up saying, my quality of life.
Yesterday afternoon my home was invaded by an army of women (well 3 of them anyway). Lindsay and I ran and hid out in the bedroom, shut the door and crawled under the covers. Beyond the bedroom door was bedlam: laughing, shouting, giggling, the roar of vacuum cleaners and floor polishers, the strong sickly stench of powerful cleaning products.
We have been granted house cleaning services for the next few weeks while radiation and chemo therapies seek to return me to something like my former level of self-care.
Friday I go for a pedicure at the Providence Health Center, until I can bend over through the pain far enough once again to reach my own toes.
On Monday Kevin, our landscaper, comes to cut our grass, dig up our weeds, and prune our bushes.
On Wednesday a visiting Registered Nurse will be out to monitor how I'm surviving both my treatments and my newly intensified level of supportive-care. The radiation oncologist wants to tap my lungs to drain off the fluid that is causing me to be so short of breath and to spend so much of my time coughing. The medical oncologist wants to maintain the level of fluid and use it as a gauge of the level success of the specific drugs being administered during my chemo treatments.
The visiting nurse is a compromise. The fluid will remain and the current quality of my life will be eroded as the price to pay for a better future. But the nurse will alert us all if the situation becomes unstable. Or downright dangerous.
And I am astounded to find that it suddenly takes an entire industry of people to just maintain me.
Life was once a simpler thing.
When I did it all on my own.
Posted by Barry at 5:46 AM
Wednesday, May 26, 2010
There are so many things wrong with me at the moment that if they all decide to act up in unison, the result is quite spectacularly miserable.
That was my day yesterday.
After a very promising morning (did I over do it?), my brother John took me downtown for my second last radiation treatment and had me home by 3 pm.
But by that time I felt nauseated, constipated, was gasping for air due to the fluid build up in my lungs, my abdomen had become a swallowed bowling ball pushing outward against my rib cage, my head hurt, the bottoms of my feet hurt, I ached and I was agitated and I coughed and I coughed.
But I no longer had sharp pains in my back.
"So, how are you doing today?" asked Linda as she arrived home from school, a lilt of hope upon her voice.
But there was little good news to be had from a husband in misery.
By bedtime things seemed to have settled to a tolerable level and I awoke this morning feeling not too badly, although my breathing is laboured and still I cough, the fluid rumbling around in my chest.
Today is the last day of radiation. John is picking me up around 8:30 and by 11:00 I should be back home again, this phase of treatment behind me.
Next Wednesday I begin a new cycle of chemo, which should put in check a lot of these symptoms, exchanging them for chemo side effects.
A change, they say, is as good as a rest.
Posted by Barry at 5:37 AM
Tuesday, May 25, 2010
Sully comes prancing across my brother's backyard, all puppy soft and wiggly, and climbs up on my knee. Sitting on my stomach he looks intently into my eyes before sticking out his tongue and tentatively licking my nose.
"Oh Sully, leave poor Barry alone," My brother's wife Lynda admonishes him. But Sully doesn't listen and neither do I.
We are enjoying each other under the dappled shade of the old Norwegian Maple that straddles much of Keith and Lynda's yard and shades us from the heat of the late afternoon.
Named in honour of Captain Sullenberger, pilot of the fated flight 1549, Sully the cocker spaniel is all gentle love and warmth.
Linda and I are over visiting my brother and his wife for the afternoon as an end to Canada's May 24th long weekend. We're also there to congratulate their son Mark on his acceptance to Law School at the University of Ottawa.
"So how are you feeling," Lynda asks me. She is a Registered Nurse and Manager of the Providence Center's Outpatient Department, so her questions carry more of a professional edge than most. I go through my litany of complaints and annoying symptoms and she makes suggestions for handling things differently. I ask about getting an appointment with the foot clinic at Providence, my back problems making it difficult for me to bend over far enough to cut my toe nails properly and she agrees to try to set up an appointment for Thursday.
My brother arrives back from his Tim's run with coffees for everyone. We talk about the last episode of LOST; they tell me about a new show they've just started watching called Pawn Stars; Linda tells them about plans for her retirement party at her school to which they are invited; Mark arrives and we give him a house warming gift for his new apartment; Keith tells me about how he is using a new app on his iphone to manage his exercise program.
A light wind brushes against the canopy of the large tree moving around the dappled streams of sunlight like spotlights at a rock concert.
And I think how good it feels to just be out doing normal things on a normal spring day with normal people and a warm puppy.
Posted by Barry at 5:58 AM
Sunday, May 23, 2010
2:37 in the morning, according to the liquid red numbers floating in a sea of black.
In a distant part of the house Lindsay has erupted into a loud and vicious barking. Linda stirs awake beside me and sits up.
I push back the covers and jump out of bed.
The barking intensifies.
I put on the hall light and rush into the livingroom, but she is not there. The barking is coming from the french doors at the back of the house. So I swing around and there she is, enraged at something outside in the backyard.
Putting a hand on her back, calms her somewhat and I look out through the glass at the darkened world outside. This is the City so it is never totally dark, although our many trees and bushes provide ink-like shadows.
I see nothing and Lindsay's rage begins to lessen. I open the door and together we step outside into a much cooler and more humid world. Lindsay races out around the perimeter of the yard, running around and around the periphery.
Linda appears behind me, laying a hand on my shoulder.
"What was it?" she asks.
"Squirrel, maybe. Or the neighbour's cat."
"Or those raccoons," Linda suggests.
"Could be," I agree, looking for the back dog rushing through the night.
"Say, that was some mighty fine leaping out of bed there, mister. How is your back?"
I do a physical inventory of the seven cancerous hot spots in my back. "Not in any particular pain," I tell her with some surprise. "Maybe a little stiff."
"Adrenaline is an amazing thing, isn't it?" Linda smiles.
I put my hand on hers, "Need to bottle and sell that stuff."
"Do you feel like a cup of tea while we're up," Linda asks. "Its kind of nice out. Refreshing."
And so we sit and have tea and talk a little and the pains don't return to my back even as the adrenaline ebbs away.
Lindsay returns to the deck, curls up at my feet and goes comfortably to sleep.
And this morning, while my back feels tight and somewhat achy, the pain is still gone. Curious the effect a little black waggy tailed dog can have in the night.
Posted by Barry at 6:36 AM
Saturday, May 22, 2010
Alexander Simpson was my great grandfather William's half brother. Father of 4, he accompanied his youngest daughter, Margaret, and her husband to Canada in 1912.
Margaret's husband, Robert Watson, was a Marine Engineer who had hoped to get work on a ship on the Great Lakes. However the ocean liner they sailed on from Scotland could not get through the thick winter's ice and they ended up staying in Newfoundland for a year before finally settling in Windsor, Ontario. Instead of a Marine Engineer, Robert became a Tool and Die Maker at Ford's Plant in Dearborn until he retired at age 67. Sadly he died 2 yrs later.
While Margaret and Robert were getting settled in their new country, Alexander Simpson, now 75 years of age, took a book out of the Library and read instructions for building a house, which he then proceeded to build for them on his own. The home remained in the family until 1979 and is still in terrific shape.
Alexander was a poet and a noted fiddle player throughout his long life and wrote waltzes for each of his children on their Wedding Day. The above is one of his compositions. Not being a musician myself I haven't been able to hear it. One of these days I'll have to buy some software that will allow me to plug in the notes and finally experience this being played.
To see posts from other Sepia Saturday members (or to become one yourself) CLICK HERE
Posted by Barry at 6:25 AM
Friday, May 21, 2010
It is time for the My Home Town Friday Shootout again. This week the theme is "At the Zoo".
Our contribution can be found by clicking HERE. All of the photos this week were taken by Linda on one of her class tours of the Toronto Zoo, which is located not far from our home.
If you are interested in photography or sharing insights into your home town, maybe you'd be interested in joining us.
Posted by Barry at 6:36 AM
Thursday, May 20, 2010
I'm running through the vast rush hour crowds at Union Station in an increasing panic. On my way home from my first radiation treatment I am suddenly overcome with the urge to vomit and don't know what to do.
I look for a garbage but there are no open garbage recepticals any more, all have lids with little slit openings, not large enough for a terrorist to slip a bomb through.
There are no quiet corners in the station, every inch swarms with an impatient humanity rushing for departing suburban trains.
I push my way through the rushing throng toward the distant men's washroom. Seeing me coming and the increasing look of panic on my face, the crowds start to part to let me through.
I burst into the men's room hoping to find an empty stall, but everyone on the lower level is full. My weakened back screams with the pain of the effort, as I climb the stairs between the two sections, finally finding an empty stall. The reek that meets me helps explain why this stall is not occupied. But then I'm not there for any pretty purpose.
"You may experience some nausea," the radiation technologist had explained, two hours previously. "Where the hot spot on the bone is located will require us to shoot through part of your stomach. It could also cause diarrhea, but then the Dexamethazone you're taking is constipating and it could all balance out.
I was laid out on the Radiation machine ready for my first of five treatments and she was explaining the experience that awaited me in the calm sterility of the room, the sounds of Enya playing softly in the background.
"You'll be getting five treatments which will actually increase the swelling of the tissue surrounding the hot spot which will act to increase your pain level in the short term. Although within a few days of the final treatment you should notice a decrease to the point where you experience no pain from this whatsoever. It is very important you continue to take your Dexamthazone and your ocycocet through this time. You might even find you need to increase your dosage temporarily. Talk to your oncologist about this if you need to."
I nodded understanding. The technicians left the room and the machine whined to life. Ten minutes later I was through and ready to head for home.
"I don't like your breathing," the radiation technician said as she helped me off the table. I explained about the fluid in my lungs and she asked if it had been getting any worse, which it had. So she walked me over to the radiation nursing clinic just to get it checked out. Two hours later, after my lungs had been listened to by several nurses and a doctor and I'd been for a chest xray, they told me they were more concerned by my high blood pressure reading than my lungs.
Unexpectedly my blood pressure was 154 over 102.
"This could be a total anomaly," the nurse finally said. "But you'll need to monitor it and if it stays up, you'll need to see your family doctor."
And I was released back into the outer world and sent on my way to Union Station and, eventually, back home to Linda and Lindsay.
By bed time my blood pressure was down to 130 over 70 and I prepared to go to sleep ready to face another day tomorrow.
Posted by Barry at 6:12 AM
Wednesday, May 19, 2010
Author Kathryn Magendie, a friend and frequent commentor on this blog, has sent me a copy of her latest book Secret Graces.
Opening it I discover that not only has she hand-written a very touching inscription, but that the book is dedicated to me, in part. Actually the dedication reads:
In Honor: To Peggie DiBenedetto, Barry Fraser, Stephen Craig Rowe
(and there are many more....) for keeping the light of your smile even when
old bastard cancer tries to take it away
And beyond that, I discover Kat has written me into the book as a one of the characters. Or, at least, one of the characters shares my name and after interacting with the central protagonists of the story hightails it for Canada.
Thank you Kat, I'm deeply honored.
Kat and I have been corresponding since the earliest days of this blog. She is an intelligent, funny, daring, insightful woman and a brilliant writer whose first book, Tender Graces is now the number one best selling book on the Kindle Literary list.
An acclaimed short story author and co-editor/publisher of The Rose & Thorn Literary Ezine, she lives in the Smoky Mountains with her husband, two dogs and a ghost dog.
You also might want to skip over to Kat's Blog to wish her well and check out her trailer for Secret Graces below.
Many thanks Kat. You've certain brought a smile to my face with this one!
Posted by Barry at 6:23 AM
Tuesday, May 18, 2010
I think it had something to do with the blue colour of my housecoat.
I know it had something to do with the new bird feeder we put up back in February.
But it still felt more than a little strange.
It was early in the morning and I had made a cup of tea for Linda and I. She was sitting in her chair searching for photos of bead boards in Country Living Magazine.
I took my tea out onto the back deck where the air was a little cooler than I expected. The tea cup was warm in my hands and steam began rising from its surface. I had just taken my first oxycocet of the day and a light, but comfortable, somnolent feeling would soon be creeping over me.
Since taking ocycocet I have no longer been able to mediate. Sit quietly for a few seconds and I immediately find myself waking up after an hour long nap, a head uncomfortably full of cotton wool. It is frustrating, but maybe the sharp coolness of the air, the warmth of the tea and relaxation of the drug would work some interesting alchemy.
With a sharp little thud, a blue jay landed on the deck railing right at my shoulder.
We looked at each other. He pruned a feather on his wing. I held my breath. I had never been so close to a jay.
Then he was gone, but back in a second with a craw filled with sunflower seeds from our feeder. He ate. I drank my tea, and wished Linda would come to the door to see this.
Two more jays landed beside him.
I stopped drinking.
"KA!" said one, with an ear splitting shreik.
"Ka! Ka! said another.
Then they started making alternate trips to the feeder and bringing back their loot to enjoy and squabble over. While I sat still and my tea became cool in my hands.
Linda appeared at the screen door transfixed by the sight of her blue housecoated husband playing at being St. Francis of Assisi
Then one by one the birds leaped into the air and headed off in a variety of directions.
Linda stepped cautiously out onto the deck.
"What was that all about?" she asked.
I shook my head. "I wanted to call you but I was afraid I'd scare them all away."
"They must have thought you were just another jay in your housecoat."
"I wish I'd had the camera ready."
"Don't tell Patty," I said and went back to make another cup of tea.
Posted by Barry at 5:32 AM
Sunday, May 16, 2010
Stylishly dressed in black with a discreet gold earring and several gold chains, he reminded me of an old time cowboy star of my youth, Lash La Rue. Replace the cowboy hat with a stock of steely grey hair severely trimmed into a longish crew cut, replace one eye with a medical patch and the six gun with a cell phone and the image was complete.
It was Friday and Linda and I were the Radiation Clinic on floor 1B of the Princess Margaret Hospital. I'd finished my session with the Oncologist who had decided the cancerous hot spot in my right hip that was giving me so much trouble was treatable and had booked me straight into a preparatory CT Scan to have the spot be precisely tattooed on my flesh for the radiation treatment later in the week.
The waiting room is filled with soft plastic comfortable chairs set around a huge floor to ceiling fish tank through which tropical fish swam gently behind a veil of bubbles.
It wasn't crowded and he chose the seat opposite us, settling down with a slight clumsiness, unused to seeing the world through one eye, took out his cell phone and began dialing.
A family next to him were talking quietly but loud enough for us to be unable to overhear his first couple of calls. But then the driver for the cancer society came and they left.
"...Mrs. Flynn," he was saying, "I just wondered if Philip was in? No? Oh, he took that flight to Aruba did he? Then he won't be back until later this evening? Midnight? Oh that's unfortunate."
I was sipping a large Tim Horton's coffee and trying to concentrate on Peter Robertson's book "Piece Of My Heart", which was beginning to sound vaguely familiar. Could I have read it before?
"No, they didn't need to remove my eye, thank goodness. I'm saved for another day. And I do miss my little pooches, thank you for looking after them for me. No, I'm still here in Toronto and I have a slight problem...."
I took a peek over at Linda but she seemed absorbed in the Toronto Star's crossword puzzle.
"Well, you know whenever I'm here at the hospital, which seems to be every few weeks now, they give me a hard time about bringing credit cards and things like that with me. They won't let me keep anything in the room and it all has to go into an envelope and into a safe and if I need anything they have to dig it out again and It's a hassle for them. So I've taken to leaving all my stuff at home and just bringing $100 in cash with me...
"It pays for my Gray Coach ticket from London and a TV for the room and any little extra's, you know? But they held me over for a day and Gray Coach charge a fifteen dollar fee to transfer the ticket to a new date and I've run out of money. That little bit of money I brought with me? So I was just wondering if Philip was in and could run down to the station and pay it for me. But if he took the Aruba flight, I guess that's not possible...
"Yes London, Ontario's a long way from Toronto, that's true. In this age of plastic its embarrassing not to have your debt or credit card with you. I've been a flight attendant for so long, helping passengers with their troubles and now here I am? But don't you worry...."
"Mr. Fraser," the CT Technician had arrived at my chair. "We're ready for you now."
I got up, leaving my bag, coat and hat with Linda and made my way down the corridor to the scanner. Half an hour later I had been scanned, measured and tattooed. Returning to the waiting room, I noticed Linda was all alone.
"I gave him $20," she said.
"The flight attendant?"
"Poor man. He has leukemia. His mother died of it five years ago and so did his brother."
"I was wondering if it was a scam. Put a patch over one eye, tell a story over your cell just loud enough to be heard and wait for money?"
"You're a cynic."
"Well, that's true, but only when we're downtown."
"And it wasn't that much money."
"You gave him your name and address for him to return the money?"
"I told him to pay it forward. Besides he showed me the bus ticket with yesterday's date and the small print showing the $15 transfer fee."
"Well, maybe I was wrong."
"Maybe you were. Besides I'd rather think good of people and I think he was a good man."
"Lash La Rue was always the good guy." I said, but Linda is younger than me and missed out on all those old cowboy movies and just looked at me strangely.
Maybe I'm just getting too cynical. I'm still not sure I would have given him the Twenty bucks.
Saturday, May 15, 2010
Although not a Sepia Image, it is the oldest portrait of a family member that we possess. His name is James Fraser (1785-1841), brother to my GGGrandfather Alexander.
Alexander inherited the family farm on the Duke of Gordon's Estate outside Portgordon in Scotland, while James went on to become a surgeon, married Elizabeth Hoyle, and moved to the United States.
Surgeons were not medical doctors and were not well respected in those days, with community standings little higher than those of butchers. Indeed, the principal occupation of Surgeons in rural farming communities was the removal of fingers, toes and limbs due to dangers inherent in the rough agricultural life the people led.
Portraiture for the common people also had it's quirks. In those pre-photographic days, itinerant artists would spend the winters painting headless bodies of varying sizes, wealth and sex and then would travel the countryside stopping at various farms looking for those wishing to have a painting done.
An appropriate body type would be selected from the various canvases stored in the back of the artist's wagon and the subject's head would then be painted on the body.
We don't actually own either of these two portraits but the descendants of James (in Ohio) were kind enough to mail us copies, which we treasure.
Oncologists are doctors and have considerable standing in today's medical profession. I met yesterday with my radiation oncologist who confirmed the cancerous hot spot on my lower spine, responsible for my recent (almost crippling) back pain, is treatable. I was immediately sent for a pre-radiation CT Scan, measured and tattooed. Treatment will require 5 sessions of radiation beginning, likely next Wednesday.
The treatment will increase the inflammation for a while and also increase the pain so a residential nurse will be sent to the home to help out for a few days while Linda is a work.
Then, maybe I can get off these pills.
To see posts from other Sepia Saturday members (or to become one yourself) CLICK HERE
Posted by Barry at 6:55 AM
Friday, May 14, 2010
Linda and I are on our way back to Princess Margaret Hospital for a meeting with the radiation oncologist to see what pain relief can be brought to my back.
In the meantime you might be interested in a dangerous stroll through the Dark Side of West Hill as captured in our My Home Town Friday Shootout this week.
Please bring a gas mask and envirosuit with you and click HERE
Posted by Barry at 6:14 AM
Thursday, May 13, 2010
"So how do you feel about all of this?"
Lindsay and I are down at the park for her morning run. The black skies and cool temperatures of yesterday have been swept away by strong winds and white clouds now race across blue skies.
The fluid in my lungs has slowed my pace and I can hear a slight rasp to my breathing as I walk. So I adjust my gait to match the distance I want to travel.
I click off Lindsay's leash and she surges forward down the pathway with an ease and freedom I can only admire. We weren't out for long yesterday and today I want her to have a good run.
But she stops at the top of the small rise ahead of us, waiting for me to catch up, tail wagging with evident pleasure. And suddenly there is another dog beside her. It's Molly, the little Scottish Terrier with her plaid collar and little bell.
"Well, it's the Bloggerman," says the plumpish woman coming up the trail toward me. Her rangy husband walks beside her carrying a long and hefty staff. He's been reading about coyotes in the area and isn't taking chances.
We stop for a chat while our two dogs say hello.
"I've been reading your blog, bloggerman. I'm surprised to see you out after that bad news. I'd be at home whimpering under a blanket. I can't imagine how you must feel."
"I'm feeling fine," I tell her.
She looks at me suspiciously.
"Really?" she prompts.
I try to think about how I can explain it to her. "I feel fine, I do. I feel calm, I feel relaxed. I'm sleeping the night through. I'm not obsessing about this."
"Well, okay, I guess that's good then, I suppose." She puts an uncertain smile on her face.
"I suppose. Except those aren't my real feelings. Those are the drugs I'm taking. I haven't got the faintest idea how I'm really feeling."
"Ah," says her husband, suddenly smiling, with a "gottcha now" look on his face.
"I get a little anxious around dinnertime, but that's just the Dexamethasone wearing off. I take a little hexagon pill with dinner and I'm fine again. And Ocycocet just keeps me in a mild fog all day. The Oncologist has suggested I experiment with cutting back to one pill every four hours in stead of two. I'll feel the pain a little more but I'll be more clear headed."
"Ya," her husband goes on. "But maybe drive yourself crazy with fear and worry."
"Tough times, bloggerman." says the woman, suddenly turning away with a catch to her voice. Then she looks down at Lindsay, "You look after this guy, okay, Lins? You look after this guy."
Lindsay wags her tail.
And we head off on the rest of our morning walk, my breathing now accompanied by the slight percussion sound of a rasp.
Posted by Barry at 5:34 AM
Wednesday, May 12, 2010
On the way down to Princess Margaret Hospital for a meeting with the Oncologist to discuss the results of my recent CT and Bone Scans, I joked with Linda that I wanted the Oncologist who Heads the clinic there to meet with me, not the Fellow.
"If it's bad news they always give it to the Fellow. She looks more devastated by the bad news than we are."
"No," said Linda, "If its really bad news they give it to the Intern and tell them breaking bad news it part of their training. So what you really don't want is the intern."
As it happens it was the the Oncologist.
But, there wasn't much good news that came out of my meeting with her yesterday, so what there was I may as well give you up front.
Neither the CT Scan or the Bone Scan revealed any new cancerous tumors. So that was good.
Three of the pre-existing tumors in my back have begun to grow rapidly since my chemotherapy was discontinued back in February, one in my right shoulder, one in my left and one in my right hip. Their growth have been the cause of the severe pain I have been experiencing in my back.
So I have been referred to the radiation oncologist this Friday to plan for the radiation of these three areas, although it may not be possible to treat the shoulder blades because they are so close to the area radiated in my esophagus last summer.
And there is another problem. The CT Scan showed I now have water in my lungs, the likely result of the spread of the cancer to my lungs. There are no definite signs of a tumor in my lungs yet, but that is the most likely cause. Almost the certain cause.
I had begun to notice taking Lindsay for a run in the mornings left me short of breath, not panting quite, but certainly breathing harder than I ever used to. And when the oncologist listened to my chest she could detect the presence of fluid.
So it is back to chemo in June to fight off the tumor, or tumors, that is now likely in my lungs. It seems the remaining cancers in my bones were held in check by chemo the last time and, with a little luck, further chemo may keep them in check again.
For a while.
Sadly, chemotherapy will eventually loose it's effectiveness, or the accumulating side-effects may cause irreversible damage to the rest of my system and chemo will have to be discontinued. I have already lost a lot of sensation in my feet and it's affecting my balance. But if the treatment is stopped, then the cancer will be let loose to advance again. Rapidly and aggressively.
At some point, a day procedure to remove the fluid from my lungs may be necessary.
I am also being referred to a range of Community Support Services closer to my home, including palliative care. Not that I am in need of it just now, but the time frame while elusive is suddenly more definable.
Linda and I left the hospital in silence, clutching a page with a series of dates for my upcoming chemo and radiation treatments. The subway rocked and lurched its way back to Union Station and as we transitioned between the subway and the railroad station Linda suddenly said, "Come on move faster, I can't stand this any longer."
"Can't stand what," I asked?
"The music," she said.
If I listened I could just hear the sweet music of a violin playing in the distance.
"Its just too cruel," Linda yelled above the clamor of the crowd.
Then words began to form for me around the notes. "They can't be playing 'My Way'", I shouted back. "That's just not possible."
But, of course they were. It was just the way things went that day.
Posted by Barry at 5:00 AM
Monday, May 10, 2010
I had a wonderful day yesterday at the Ontario Science Centre with my family. We had all come together to tour the Harry Potter Exhibit and to see the OmniMax presentation about the Hubble Space Telescope.
Our grandchildren were astounded by the Harry Potter artifacts from the movie and I got to spend some time resting in Hagrid's massive chair, feet dangling and feeling like a 5 year old.
Although Linda had phoned ahead to ensure wheelchairs were available, by pacing our visit with enough rest stops I was able to manage very well.
Tomorrow is my appointment with my Oncologist for feedback on both my CT and Bone Scans and to find out their recommended changes to my treatment.
Right now I'm feeling very well but I'm also just about to take my first Oxycocet for the day and know that will put me to sleep and leave me groggy for another couple of hours until it's time for my next dose.
But at least I was wide enough awake this morning to find the following short video which will bring a smile to your face, maybe brighten your day, and could even give you a new direction to your life. How cool is that?
Posted by Barry at 7:14 AM
Sunday, May 9, 2010
It wasn't as if I hadn't been warned. I've had nothing but dire warnings for the past two months. It wasn't as though I hadn't sought out help. It was a month ago I went to my family doctor and was put on Tylenol with codeine and referred to my oncologist who ordered a series of tests.
But, despite the Tylenol and despite the jacuzzi and despite the use of cold compresses and the meditating and the elixirs from the Naturopath and the extra vitamin D, by Friday morning the pain had become intolerable.
The day had started out well and Linda had left happily for work. I completed the last in my 40th Anniversary Fiasco series and Lindsay started to remind me that it was time for her morning walk.
That's when I first noticed an escalation in the pain in my lower back. It was agony getting to my feet. I discovered I couldn't put on my socks. Usually I just stand and put them on, a thoughtless act repeated thousands of times. But when that proved too painful, I tried sitting on the end of the bed but couldn't cope with that either.
I decided I'd better ice my back, but our freezer compartment is at the bottom of our Fridge and I couldn't bend down low enough to reach it.
So I apologized to Lindsay and let her out for a run in the backyard, there was no way we were going for a run that day.
Instead I sat down in my Laz-Z-Boy and phoned my oncologist's office and explained my situation to her nurse. Who promised to relay my message and get back to me.
An hour later she called back. The oncologist was tied up with patients but had had a look at the results of my recent CT Scan and it showed growth in the cancer in my right hip. Sufficient growth for me to be feeling severe pain.
"What are you taking for pain?"
"Right now? Tylenol with codeine."
I checked the bottle and told her.
"That's only Tylenol 2," she said. "Why would your doctor give a cancer patient with severe pain Tylenol 2?" I could visualize her shaking her head. "Listen, we're going to put you on Oxycocet for the pain. It will take away the pain but the price will be that it also will make you very fatigued and drowsy. To fight the drowsiness we're giving you Dexamethasone, which is a steroid. However, the price of taking the steroid is that it will make you constipated, so you'll need to drink plenty of water and take some over the counter stool softeners."
"Anything to get rid of this pain." I told her.
"So we'll fax these through to your local Drug Store but I want you to promise you will take them on exactly the schedule we've laid out and don't get into thinking you can tolerate the pain and delay a dose. Do you hear me?"
"Loud and clear. I promise."
"They will likely decide to give you an emergency radiation procedure on that hip when you're in for your scheduled visit on Tuesday, after they've reviewed the results on your Bone Scan, so come prepared for a longer stay."
Two hours later the drugs had been faxed through to my local Shoppers Drug Mart and I went through the agony of driving up to the drug store to get them. ("Don't you EVER do that again," Linda later told me. "You call me at work and I'll go and get them! Don't you ever do that again.")
After I returned home I took two pain killers and within 15 minutes the room had started to spin. Now I wasn't able to get out of my chair not only because of the pain but because the room wouldn't stand still. 15 minutes after that, I was asleep.
And that's how Linda found me.
It has been two days now and my body is adjusting to the medications. The Oxycocet still puts me to sleep but only for half an hour and then I'm relatively pain free and have enough energy until it's time for the next dose.
The family are getting together for Mother's Day at the Ontario Science Centre to see the Harry Potter Exhibit today and I'm determined to go with them. Although I have heard mutterings of "wheelchair" as Linda has talked with various family members on the phone.
Well, if that's what it takes, that's what it takes. The pain is bad enough, I'm not missing out on life too.
Posted by Barry at 6:16 AM
Saturday, May 8, 2010
Having spent months looking at my father's side of the family, I thought it would be only fair to spend some time looking at my mother's side this week.
My mother adored her father, Captain George Shepherd, a World War One hero and blacksmith in the Town of Mitcham, England.
2nd Lt. (A/Capt) George Shepherd (1892-1953) originally served in the West Surrey Regiment as a Sergeant before taking a commission in the 2/10th Middlesex, as a 2nd Lieut and later Acting Captain.
Captain Shepherd was wounded in the legs in Gaza in 1917 where he won the Military Cross. His citation reads:
"For conspicuous gallantry and devotion to duty. When the left flank of his battalion was exposed, he pushed forward with three men and covered it for half an hour without assistance, under a cross fire from machine guns, setting a very fine example to his company. Dated, near Gaza, 26th and 27th March 1917."
After the war he worked with his father, George Sr., in his Cart, Caravan and General Smith business, taking the business over when George Sr. retired. Captain Shepherd, as he continued to be known, then employed his younger brother Fred to help with the business.
He married Rosanna Staines and raised three children, Rosanna, Eileen and Edward (Ted) Shepherd.
To see posts from other Sepia Saturday members (or to become one yourself) CLICK HERE
Posted by Barry at 6:34 AM
Friday, May 7, 2010
When they called my name I had a sudden sense of panic and didn't want to go. We were back in Toronto after an all too brief stay at the Bonnie View Inn in Haliburton, our final planned day at the Inn cut short by the scheduling of a Bone Scan for me at the Toronto General Hospital.
I'd had bone scans before and the actual procedure held no terror for me, but laying on my back on the hard bed that is inserted into the machine for half an hour, frightened me considerably.
The previous week's CT Scan, which only lasted 15 minutes, caused so much pain to my back it took two technicians to lift me into a seating position before I could exit the machine. And my back was in agony for days.
A couple of dips into the jacuzzi at the Inn had done wonders for my back, and I didn't want to return to my previous agony.
But I had to know what was causing my back pains, so I went like a good patient. I explain to them my experience with the CT Scan the previous week and they did their best to make me more comfortable and they assured me they had lots of help if I was unable to sit up on my own.
Then they strapped my arms to my side, taped my feet together and slid the table and I deep into the machine.
There is no noise with a bone scan and no sense of motion as the table slowly slides back out of the machine across half an hours time.
And in the end, predictably, my back was returned to agony and I needed the help of the technician to sit up and step down from the machine.
Linda was sitting anxiously in the waiting room as I returned and I think the look on my face was enough to tell her how I felt. We stopped at the hospital pharmacy to pick up some Advil because even the Tylenol with codeine I was on was not doing its job.
And then we went home where the last surprise of our 40th Anniversary weekend was waiting for us.
I had received a letter from Revenue Canada informing me that because the amount of my retirement pension was based on my previous year's income, when I had been receiving a full salary from my work, my Retirement Pension was being cut by $250 a month.
I laughed. I laughed until I hurt (which didn't take much). And eventually Linda started to laugh as well. It was just too absurd. An absurd ending to an absurd weekend.
"Happy Anniversary," she said.
And we kissed.
Later, on my daughter Heather's blog, I found a very short little song that I don't think she posted with me in mind, but it was the perfect theme music for my anniversary. It healed my soul and gave me back the hope the weekend had almost stolen from me. Here it is---
For my Friday Shoot Out on "Things I love to touch" click HERE
Posted by Barry at 5:10 AM
Thursday, May 6, 2010
The pulsating jets of the jacuzzi gently pummeled my aching back relieving pains that had been deep and pervasive for weeks. I felt buoyant in the warm swirling waters as taunt muscles relaxed for the first time in weeks.
Linda and I had finally made it to the Bonnie View Lodge in Haliburton, about a two hour drive north of Toronto. We had left Linda's car at the dealer to repair her radiator, my computer at Staples and Lindsay with Steven.
The drive had taken a little longer than expected due to the incessant rain but the world was parched and the rain was sorely needed. The Bonnie View was not our first choice for accommodation, nor our second. It had actually been our sixth. We had originally booked for three nights, but had had to cancel Sunday evening due to my oncologist booking a bone scan for me on Monday morning and then had had to cancel Friday night due to Lindsay's discovery of a hole in our fence.
But now we were here and the warm waters of the jacuzzi were easing my soul.
Linda was off at a shower for one of the women at her work. We had chosen the Haliburton area for our 40th Wedding Anniversary, in part, because all of the women on her staff were gathering at a cottage nearby for the shower.
So I was alone and almost floating in the jacuzzi, watching the rain fall on the vast waters of the northern lake through the secluded cabin's large picture window. It was unfortunate I couldn't rebook my massage but the spa at the Bonnie View was fully booked and I was out of luck. Then again, I'd been feeling out of luck for several days now, so that was nothing new.
The warning buzzer went on the jacuzzi, alerting me my time was up. Reluctantly I crawled out of the tub and put on the robe the Lodge supplied, lay down on the soft leather couch, picked up a book and started to read.
Above me I could hear the sound of the rain gently pattering on the roof.
And immediately fell asleep.
I woke up two hours later as Linda arrived back from the shower animated with stores of the huge cottage she had been to with three stories, five bedrooms, three baths and a great room large enough to seat all 20 members of her staff around one massive table.
And as I saw her smiling and laughing it was as if I had managed to leave all my misfortunes, and my pains, all my worries and illnesses two hundred kilometres to the south.
It was a shame we would be leaving tomorrow but inconceivable that life could hold any further troubles for us. We had had more than our share this weekend already.
But of course life is great at pulling the inconceivable out of its sleeve. Ta Da!
And it still held two major surprises for me. One medical and one involving the Federal Government.
To Be Continued.
Posted by Barry at 5:57 AM
Wednesday, May 5, 2010
Linda, Steve and I arrived at the Scarborough Humane Society Pound on Progress Avenue at 4:50 on Friday evening. Instead of calling the general Toronto Humane Society number I had decided to phone the pound nearest to us and sure enough a black and white waggy tailed Spaniel had been picked up in our neighbourhood at 12:15 that afternoon. We were on our way to identify her and spring her from the hoosegow.
"She doesn't have a license," the uniformed officer at the front desk observed.
"No, she has an implant. We were told by the vet that if she had an implant she didn't need a license."
"How old is she?"
"So that means she would have been born in 1999? That was the year the law changed. If she was implanted before July, she didn't need a license. After July she did."
"Well, she couldn't have received the implant before July because she wasn't born until September." Linda confessed.
"We couldn't find the implant, It must have migrated over the years," the guard said. "Then she'll need a license. Plus pound fee. That I'll be $80. Julie do you want to go fetch that new dog?"
One of the four women working at desks behind her finished her keyboarding, stretched and headed off down the hall.
Five minutes later the elevator door at the end of the hall opened and Lindsay came scampering out pulling the small woman behind her. Lindsay's nails were sliding and clicking on the hard marble floors as she raced toward us, tail wagging with glee.
I bent down to embrace her as she raced down the long corridor with the young woman skidding along in her wake but an instant before she got to us she passed a box on the floor with an interesting scent, screeched to a halt and immediately turned to explore it.
"So much for joyful reunions," I said. "Well, what can I expect Lins, now that you're a criminal. A convicted felon! Found wandering the streets in a complete state of unleash."
Lindsay finally decided to acknowledge our existence and turning her nose from the box started wiggling at our feet.
We paid her bail, sprung the waggy tail con from the joint, and headed for home.
"I'm exhausted." Linda confessed. "This has been so emotional, I don't think I could face a two hour drive up north tonight."
"I'm with you on that," I agreed. "We better cancel the room for tonight and head up first thing in the morning. Besides we have that fence to mend."
And so we called the resort and explained what happened and canceled our room. And canceled the massage I had booked, while Steven went out and repaired the fence.
Then I sat down and started up my laptop and opened Firefox which immediately crashed. Taking the entire computer down with in. Cautiously I restarted it. It crashed again. I tried again. It froze. I swore.
"Something has it in for us." I said.
And it had.
To be Continued.
Posted by Barry at 5:29 AM
Tuesday, May 4, 2010
There was a moment when everything was perfect. Linda and I were going away on a weekend's vacation to celebrate our 40th Wedding Anniversary. Her boss had given her Friday afternoon off so we could beat the weekend traffic out of town. Linda's brother Steve was coming over to look after Lindsay for us and at 12:14 that moment of perfection arrived as I saw Linda car pull into the driveway just as Steven knocked at the door.
12:14 the moment of perfection.
But time doesn't stand still.
"Hi," said Steve coming in the side door and looking all around him. "What no Lindsay to greet me?"
"She's in the backyard sleeping under her tree, Steve." I told him.
"Well, I'm going to head out to let her know I'm here." And Steve headed for the backyard just as Linda came through the door behind him.
"The warning light's come on in my car," she told me. "And there's some fluid running out underneath it."
"That doesn't sound good," I said. "Let me have a look."
I went out to find a growing puddle of green fluid forming under the extreme front end of Linda's car.
"It's your radiator," I told her.
"Oh great, what a lousy time for that to happen," said Linda. Linda had planned to drive us up North to save me the stress on my back, but she is only comfortable driving her own car and is positively nervous behind the wheel of mine.
Steve came to the side door. "Are you sure Lindsay's in the backyard? I can't see any sign of her."
"I let her out about half an hour ago," I said heading for the backyard.
Where there was no sign of Lindsay.
Linda called, I whistled, but no Lindsay appeared. Steve started an inspection of the fence around the yard, checking for escape routes behind every bush. Eventually he found one.
"Here," he called. "One of the boards got loose in the winter. You can see where she dug the earth away just a little deeper to let her get through."
"We better start looking for her," said Linda.
We live in the middle of a suburb, a maze of streets in the far East end of the City and each of us headed out in different directions, calling Lindsay's name, stopping passers by, stopping people out working in their gardens, even stopping garbage collectors. Lindsay is a VERY social dog and it is inconceivable that she wouldn't have gone up to say "Hello" to everyone she passed.
Although many of the people in the neighbourhood know her, none remembered seeing her out on her own.
An hour later, Linda, Steve and I all arrived back at our house, more worried than ever but none the wiser.
"At least we found no injured animals laying by the side of the road," said Linda, voicing what all of us feared. Although we're in a fairly quiet subdivision, there are still a few idiots who speed recklessly along the winding streets and we live only a Kilometer from one of Toronto's major thoroughfares, the Kingston Road.
While we rested up I phoned the Animal Clinics in the neighbourhood but no one had brought Lindsay in to them. Lindsay has a chip implant so it should be easy for any of them to get her contact information and call us. But there were no messages waiting. I called the Toronto Humane Society but no dog matching Lindsay's description had been turned in.
After a brief rest Linda and I went out driving in my car where we could search more territory and further afield, while Steven headed off to explore some of the nearby parks, thinking she might have headed for some of the areas where she and I frequently go for runs.
Two hours later, puzzled and saddened, we all gathered back at the house and began to discuss printing up posters.
"And if that doesn't work," asked Linda. "What will we do then?"
But I had no answer for her.
To Be Continued Tomorrow.....
Posted by Barry at 2:47 PM