If you would like to keep up with news of Barry's time in the hospital, please visit my blog,
http://livingintheeasternwoodlands.blogspot.com/
I am Barry's wife Linda and I will be posting news every day. Thank you.
About every five minutes as I type this, I'm stopped by a harsh, gasping cough as my lungs rebel against the constraints of the fluid that surrounds them. The same cough that has kept me awake nights for weeks now. The same cough that kept me awake until well after midnight last night until exhaustion finally overcame me and I drifted into a fitful sleep.
At 10:30 this Happy Father's Day, my daughter Kathy will arrive to take me on the long drive down deep into the City where I will be admitted to the Toronto General Hospital for best part of the week to have the fluid finally and completely drained from the pleura surrounding both lungs and to seal the pockets of the pleura to prevent this ever happening again.
I will be taking my laptop with me, but have already decided not to do any posts this week, even if the hospital has internet access. So don't expect any updates on this blog until at least next weekend. If anything really interesting happens, Linda will be sure to let you know.
In the meantime, I have some packing to do and a flood of pills to take.
Let me wish all the father's out there a Happy Father's Day.
As for me, like the President of BP once famously said, I'm looking forward to getting my life back. And hope this week will do the trick.
I put together this brief tribute to my father, William Fraser (1902--1987), several years ago. Given the proximity to Father's Day it seemed a reasonable post for this week's Sepia Saturday.
Also a sneaky way to get in lot of photos without over burdening blogger, or myself. The video is just over a minute in length.
"Bye, Bye Black Bird" was his favourite song.
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To see posts from other Sepia Saturday members (or to become one yourself) CLICK HERE
To see our Friday My Home Town Shoot Out for this week, with links to other contributors, please click here
Linda stirs beside me in the bed and takes a peek at the clock. I snuggle up behind her and put my arms around her.
"It's the big day," I whisper.
"So it is," she agrees sleepily.
Today the staff at her school, where Linda has worked for 25 years, are celebrating her career. Former Principals will be there, family, former students, Board trustees and many, many others will be out to wish her well.
Linda has been instrumental in Berner Trail Public School winning the gold standard as an eco school, has lead the school choir for a generation (and even sang the anthems at a Blue Jays game). As a teacher and an artist and an environmentalist, Linda has left her mark on her profession and her school.
But, for the moment, Linda isn't anxious for the day to begin. It is comfortable just resting here in the early morning light.
Her brother Steve and I will take a taxi to the Party, since, between numbed feet, drugs and constricted lungs, I no longer trust myself to drive.
Linda was up late last night putting the finishing touches to a scrapbook she has been compiling of her career. Letters of commendation from the Board, photos of folk dancing groups she's led, the safety patrol she managed, the wilderness trips she supervised, photos of former teachers and friends.
So many memories.
But now Lindsay comes wiggle wagging her way into the room with a "come on guys its after getting up time and I need to go out" look on her face.
And Linda stirs, throws back the covers and her day begins.
Lindsay hears it long before we do. She comes running out of the back office in full defensive mode, the hair standing up on the back of her neck, and rushes to the front window.
Linda and I exchange "what's got into the dog?" glances. And then I hear it too.
A very deep and distant "thup, thup" sound approaching rapidly from the East. Suddenly there is a vibration in the house and everything that's loose seems to be rattling.
Lindsay starts to bark ferociously.
And a large military helicopter sweeps quickly by over head destined for the distant towers of the downtown core where the G20 Summat preparations are in full swing. Defending the leaders of the world's most powerful nations on their two day visit to Toronto will cost tax payers over a Billion Dollars. More, even, than the recent Olympics held in Vancouver.
"Who's here?" asks Linda, noticing a car pulled into our driveway.
I've spent the last few days in a state of exhaustion punctuated by the return of a rattling cough that disturbs my sleep and irritates my days. The relief I'd been experiencing from the medications prescribed by the psychosocial oncologist, only mildly moderating the experience now exacerbated by the side effects of chemo.
My chair is closest to the window. "Looks like Wally and Ruth," I tell her.
Wally climbs out of the car and watches the massive helicopter receding into the distance. Wally and Ruth are my daughter Kathy's in-laws.
Linda goes to the door to greet them and I can hear laughter in the distance. The two women are talking and I can clearly hear Linda saying, "Oh now look, you have me in tears!"
I become concerned.
But there is more talk and more laughter before their car pulls back out of the driveway and Linda returns carrying a small blue box. Her eyes are wet with tears and happiness.
"They brought us muffins," Linda tells me. "Ruth was thinking about us and baked us some muffins."
And I marvel at this woman beside me who has been holding back the very Forces of the Universe to care for me, profoundly moved by a simple act of thoughtful kindness.
Wally and Ruth, two more good people in my debt.
As an Explorer I was always on the go. However, in my English Pram in 1945 I had to wait for Mommy Power to get me moving.
At that age all I could do was dream of being a train engineer.
By the time we had moved to Canada in 1946, I had discovered a love for dogs and was inspired by their freedom to move.
I thought about becoming a farmer and working with massive farm machinery.
I wondered if by being nice to girls they would take me for a ride. And many did. Just not always in ways I had imagined.
Of course I could always rely on my dad and dream of being a fireman.
Or I could just strike out on my own and see what adventure the world had to offer.
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To see posts from other Sepia Saturday members (or to become one yourself) CLICK HERE
"You don't happen to work for a circus, Mr. Fraser?" asked the Pharmacist from the doorway of my room at the Chemo Day Care Center. She was fairly short and I could just see her over the shoulder of my nurse who was busy tapping my forearm seeking a suitable location to insert the needle for my drugs and pausing only to make little "Grrr" sounds of frustration.
"Work sometimes felt like a three ring circus, but no, I never actually worked for a circus." I croaked in my weakened little voice.
"Because your chart says you are the tallest man I've ever met. Nine feet tall, in fact. How about basketball?"
"Baseball and hockey were more my games." I laughed. "But then I'm only 6 feet tall. Have always been six feet tall since I was 18."
The Pharmacist smiled. "So you're sure you didn't grow an additional 3 feet over the past week?"
"Grrrr!" said the nurse beside me, tapping even harder on my arm.
"I think my wife would have mentioned it." I assured her.
"Well, my loss." smiled the Pharmacist. "We formulate your drugs based on height and weight and legally we have to check any anomaly on the chart, and this was quite an anomaly. I'll get busy with your drugs and get them up to you as quickly as I can."
"Okay, I give up." said my nurse. I don't think you have any veins in your forearm. Maybe one of the other nurses will have better luck."
And she headed off to find help leaving me alone in my room.
The Chemo Day Care Center is beginning to feel like a comfortable place. I've been coming here for over a year now. The only difficulty for me was when I entered and had to pass by the bell that is rung when patients complete their final round of treatment. The bell I had rung back in February and whose ringing was echoed around the world by those friends who follow this blog.
Well, bell, I thought as I paused to look at it. I will be seeing you again in a few months time. Just wait right there for me.
And then my nurse returned with a slightly older colleague who found a suitable vein within thirty seconds and I was hooked up and ready to reacquaint myself with Taxol.
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To see Barry and Linda's contribution to the Friday Shoot Out please CLICK HERE
The words of the thoracic surgeon seem coated with oil and slip away from me as I try to grasp them. This gives them the sense of delayed meaning, as if they're being translated and I am always a meaning or two behind.
It isn't just his heavy French accent, it is also the content. He is telling me I will need to be hospitalized for 4 or 5 days to thoroughly drain all the pockets of fluid that surround my lungs and to then seal each of those pockets so fluid can never again accumulate.
The "never again accumulate" part sounds fine. But the five day hospital stay isn't what I wanted to hear.
It has been a long and frustrating day at the hospital, made much easier by the new regime of medication I have just begun. The day before, the Psychosocial Oncologist had replace all my pain meds with a new cocktail he promised would eliminate my pain and give me significant relief from the chronic, gasping cough that had transformed my life into a nightmare over the past three weeks.
I had begun taking the new medications in the morning and discovered the oncologist was as good as his word. My pain was gone, my cough was gone and I had none of the brain numbing drowsiness that accompanied the previous pain meds.
However, the fluid was still around my lungs sapping me of any energy I might have once possessed. And we'd been kept waiting for three hours past our appointment time with the surgeon, due to a crisis he'd had with an earlier patient.
But now we were negotiating my entry into hospital. It couldn't be this week because we didn't want to do anything to delay my starting chemo on Thursday. Then the chemo side effects would take a few days to pass. And the 17th was Linda's Retirement Party which I didn't want to miss, or have canceled so she could be with me.
Finally there was the upcoming G20 summit taking place in Toronto and the fact that the hospital was smack in the middle of the currently being fenced in security zone. We had to get me in, and out, of hospital before that circus began.
So we settled on the 19th, which will see me in hospital over Father's Day. Which was unfortunate.
Although, as Linda said, what better Father's Day gift could there be than the ability to breathe.
"None?" I asked in disbelief,
"None," he said firmly. "No pain. none whatsoever, throughout the entire course of this disease. There is no need for it and your body spends too much energy fighting it when that energy could be put to better use fighting the disease."
Linda and I were in one of the treatment rooms in the GI Clinic at Princess Margaret Hospital having our first meeting with the Psychiatric head of the Psychosocial Oncology Department and Palliative Care Unit. He was a tall, calm man, with a soft voice and the body of a weightlifter.
"What did you think when you heard the term 'Palliative Care'?" he asked. "What did that term mean to you?"
"Preparation for death." I told him.
"Well, we can do that too," he agreed. "But that's not what we're really all about. We're about pain management and quality of life. And it looks like the quality of your life over the past few weeks has really sucked. So we need to fix that immediately."
"I'm all for that"
"Nothing we do here will affect the progress of the disease you're fighting. We will leave that up to your medical and radiation oncologists. We're here to make you feel better and maybe free up some of your energy to allow you to join back in the battle yourself. So, I'm changing all your medications....."
And an hour later, Linda and I are headed home, Linda clutching a fist full of prescriptions that will relieve my pain, stimulate my appetite, relieve my chronic and annoying cough and give me back the energy I've lost.
We drop off the prescriptions at the drug store ("Are all these for Barry!?" the Pharmacist asks in disbelief) and make it home half an hour later, Lindsay dancing for joy around our feet.
There are phone messages waiting for us. Linda settles wearily into her chair and plays them back.
"Hello," says the first voice. "This is Mary at the thoracic clinic. We have you booked in tomorrow at 9 am for a procedure...."
Across the room, I've already begun a ragged cough. You certainly do, I think. The sooner you get this fluid away from my lungs the better.
"If afraid the doctor has been called away and won't be available for your appointment...."
For Linda and I both, the room became suddenly cold and silent.
"However, I know you've been waiting quite a while for this procedure, so I've managed to book you in for another appointment at 1:30 tomorrow afternoon. Only a couple of hours later than you would have come. So we'll see you tomorrow at 1:30 not 9 as originally scheduled."
Linda and I collectively exhaled. And life went on.
There are no longer any clocks that tick in our home. Or tock, for that matter. Once upon a time the metronomic beat of the clock was all there was to be heard in the silence of the night. But now, everything is digital. And quiet.
In a few moments Linda will be getting up to get ready for work. Lindsay will be asking to go out, neighbours will start pulling out of their driveways and heading off into the early morning. Birds will start their song.
I have coughed myself awake again and have brought myself out to the livingroom to allow Linda another hour or so of sleep. The procedure I had done to remove fluid from around my lungs has had minimal, if any effect and I am still staggeringly weak and often panting for breath.
And in pain.
My brother Keith came and took me over to his home for the afternoon yesterday where I relaxed in his backyard with his wife and son. They had a couple gifts for me. A shower chair for the bathtub to minimize any risk of a fall and a shillelagh to use as a cane when I walk.
"You look really cool with the shillelagh" Keith's wife told me.
"Just call me House," I replied in my thin new voice. A voice so strangled and strange I sometimes wonder who is speaking.
This afternoon is my first visit with the Palliative Care Unit at the hospital. Of course they don't call it that. Formally it is known as the Psychosocial Oncology Unit. But, of course, all the staff just call it palliative care. And among the services they offer, they do admit to "providing ongoing care and symptom management to meet the complex needs of individuals whose cancer has not responded to other treatment."
That would be me.
Although tomorrow I finally get in to see the thoracic surgeon to see if he can to anything further to relieve the fluids still trapped in pockets around my lungs. And on Thursday I restart chemo.
And by the weekend, maybe I will be feeling somewhat improved.
At least, that's the plan. For now.
As I hear the first car of the day creep up our street and somewhere far in the distance, the "rita, rita, rita" call of a Cardinal.
I'm sitting on the bed in the enclosed examining room at the back of the Chemo Day Care Center, my feet dangling over the side and my head resting on the surface of a pillow that's been placed on top of the table beside the bed.
My back has already been sterilized and injected with a local anesthetic.
"You shouldn't feel this," the doctor said as she inserted the long needle between my ribs and into my pleurae.
There are two pleurae, one around each lung. The pleurae act as a protective wrapping, fitting snugly over the lungs. Pleurae are made up of two layers. Normally, there is no space between the inner and outer layer. The layers are joined at the edges, so that the pleura might be compared to a closed balloon, completely empty of air and wrapped tightly around the outside of each of the lungs.
Normally, there is nothing but a thin layer of fluid between the inner pleural lining and the outer one. The smooth pleura linings and lubricating fluid allow the lungs to move freely in your chest, as they do in normal breathing.
In my case this space has fill up with fluid that is restricting the movement of my lungs. Crushing them, in effect.
A large bottle suddenly appeared beside my nose, filled with what looked like a fine ale, or light urine. Take your pick.
"Here's the fluid that was around your lungs. It looks clear. So, luckily no infection" the doctor went on.
"So we're trying for a litre?" I ask.
"Well, lets see what we get," she said.
And, about ten minutes later, she had three bottles full, a little over a litre and a half, when the flow ran out.
"Your lung has been cramped, kind of like a sponge, for the past couple of weeks, now it's time for it to expand into the space we've just created." she went on. "Do you notice any difference in your breathing?"
But I didn't.
So it was down to X-ray to see what was going on.
Half an hour later I'm back up in Chemo Day care, two doctors now pondering my latest chest X-ray. There is the possibility my lung may have collapsed during the procedure, in which case I'll be admitted to the hospital overnight while they re inflate it.
But something very different is going on, and at least as problematical.
"In a few people," the doctor explained, "The space between the inner and outer walls of the pleurae isn't just one empty space, but is divided into pockets. And you happen to be one of those people. We thought we'd removed all of the fluid around your right lung, the one that was the most problem, but it seems we've only tapped into one of the pockets. A large one, but a pocket none the less. The rest have remained filled with liquid. And that's also likely the case with your left lung as well. So there is still a significant amount of fluid trapped against your lungs and your lung can't expand to the extent we'd hoped."
"I am experiencing some relief," I told her. "I seem to be thinking more clearly and haven't coughed in about an hour."
"Well, you're seeing the thoracic surgeon on Tuesday. The fluid we've removed should make life more comfortable for you until then. You should be able to sleep better and have less of a cough. But, well, the problem will remain. The symptoms will just be less intense."
And so I'm home again where the symptoms are less intense and more tolerable, and I'm waiting until Tuesday.
As is Lindsay who hasn't had a good run with me for over three weeks now.
"So, we have a new plan," said the oncologist.
Linda and I waited. It had been a long and exhausting day at Princes Margaret Hospital. A day of concern and support and additional testing. A day of confirming, once again, the power of reality over hearsay.
I always thought I was a good communicator. After all I it had been the way I made my livelihood back in my working day, not so very long ago. But for the nurses and doctors my phone calls reporting on my condition paled into insignificance with one look at me panting and choking for breath in their office.
Suddenly my back and chest were being stethoscoped, my blood pressure taken, my oxygen level monitored. I was being given new chest X-rays and new blood samples were being taken. And Linda and I were urged to report on the increasing devolution in my condition that we had been experiencing over the past week.
Then Linda and I waited while the medical team huddled and conferred, coordinated and came up with a new plan for my future.
"So, we're canceling your chemo for this Thursday and moving forward the suctioning off of the fluid surrounding your lungs."
"Surrounding my lungs? I thought the fluid was actually in my lungs?"
"No the fluid is between the surrounding membrane and your lungs, putting pressure on them from the outside. Crushing them, in effect. We'll be suctioning off about a litre of fluid"
"A litre! Good Lord. A full litre of fluid?"
The oncologist smiled, "There's actually about a litre and a half of fluid there, but we're going to leave half a litre as a buffer and let the thoracic surgeon decide what to do about the more delicate work when you see him on the 8th. The risk isn't great but whenever your poking around the lungs with sharp pointy objects there is always the risk of puncturing and collapsing your lungs and we'd rather let the surgeon take that risk because then there'd be the need for more and immediate surgery."
Linda and I paled a little. Or a lot.
"He might also want to install a permanent tap in your chest to ease the risk of damage when further fluid extractions are required, because unfortunately, once you've had this done once, it may have to be repeated, unless the chemo proves even more effective at fighting off the disease this time around."
We paled again.
The oncologist smiled again, "But I promise, once the fluid extraction has taken place on Thursday you will notice a dramatic difference almost immediately. Not only will that panting and cough stop, but all your old energy levels will come back. And you should have no difficulty sleeping."
And so Linda and I left the hospital with a completely revised schedule of appointments including a plan for three new chemo cycles stretching forward into mid summer.
And hope.
Through the slats on the Roman Blinds, I watch the weakened beam of a car's headlights as it pushes through the drizzle of an early morning. But it passes slowly by, the sizzle of its tires on the wet road slowly fading into the distance.
Linda and I are ready to go for my pre-chemo visit with the Medical Oncologist at Princes Margaret Hospital. A former student of Linda's has agreed to drive us today, despite the need to leave in the early hours of morning and face the frustrations of Toronto's rush hour traffic.
The congestion in my lungs had me up three times in the night, so I am feeling even more exhausted and sleepy than is usual even for me these days. And once I've taken my first oxycocet of the day, the exhaustion will only increase.
Another car slowly makes it way down our street, another neighbour on the way to work. Another neighbour going through the normal patterns of his life.
The rain signals an end to the oppressive heat wave that has hung over the city for the past week and that hasn't helped my breathing in the least. The forecast is for cooler temperatures and even more rain on into the coming weekend.
Maybe now we can turn off the central air conditioning for a while and let some fresh air into the house.
This time the car outside my front window slows and stops.
"Persaad's here," I tell Linda.
"Right on time," she says.
I start coughing, my lungs struggling to reject the fluid that weighs them down.
"Let's hope the Oncologist will find a way to speed up your getting your lungs tapped."
"I hope so too," I say, pushing my weakened body to its shaky feet.
And so we head off into the rain and the long drive downtown and an outcome we will not know until this afternoon.
Wish us luck.
