Ron Graham Update

2004-01-20T12:16:00.000-07:00

If you're here reading this, you know enough about the internet to realize the sum of its parts - email, the web, chatrooms, instant messaging, 'blogs and lists - has changed the way our world works. It certainly changed the way I deal with terminal illness and death. I spent years working with our local AIDS community group in the '80s and so I am no stranger to death and dying.

But what a different world we live in now.

The first time I joined a listserv devoted to a terminal illness and encountered the phenonema of medical sig lines, I felt the shift. And within hours of Ron's tumour diagnosis I knew to sign up for brain tumour lists. In between frantic research forays for the latest info on clinical trials and experimental treatments, I visited 'blogs set up by survivors and loved ones.

I learned about the road ahead. If sites like Virtualtrials.com were like a traveller's notebook, with addresses and phone numbers to the world's specialists, then PubMed and MedLine were the maps, the travel guides. And the 'blogs became my Paul Theroux, my Bill Bryson, and yes, my P.J. O'Rourke as I navigated this journey.

And now I find myself keeping a 'blog.

Calgary journalist and friend Val Fortney called me up a day or two ago to interview me for a column today about the use of 'blogs to chronicle cancer journeys.

She writes: "The Internet has gotten a bad rap, and deservedly so. It's overflowing with hardcore porn, spam fills our inboxes every day and far too many blogs are a cyberspace form of vanity press, providing a podium for the dull and ill informed. Then, there are those hidden gems provided by people like Andrew Wark and Ron Graham, who have gifted us with stories that teach us about appreciating life and facing death with courage, humour and love. The catharsis such blogs provide for writer and reader strengthens both, and ultimately leads to a greater sense of community."

2003-12-23T13:55:00.000-07:00

Ron wrote this a few years ago for the Christmas Eve edition of his newspaper, and his son Kevin read it at Ron's memorial.

Merry Christmas to you all, and I hope you find as many moments of peace and joy as you need. -- Jodine

"The Longest Day
by Ron Graham
(for the Monday, Dec. 24, 2001 Christmas Eve edition of the Edmonton Sun)

A lot of people don't seem to realize that today is the longest day of the year. They think last Friday was the shortest day and June features the longest day thanks to that solstice and equinox stuff.

Who cares about all that? Any five-year old can confirm that today is the longest day of the year. Every hour is closer to bedtime. But every hour takes an eternity.

And when bedtime finally comes, it can take a whole other forever just to fall asleep, especially if you're listening extra hard for the sound of reindeer snorting, hooves pawing, maybe Santa coughing from all that chimney dust.

And if you have brothers or sisters, well, there you all are trying to listen, trying to share in the magic of a special, nothing-else-like-it night.

I guess this is why most folks think Christmas is for kids. Of course, most folks are wrong. Christmas is easily the most important day of the year for adults.

Kids are, by nature, by design, open, believing, full of good cheer, forgiving, and taking every day just as it comes.

Don't believe it? Just watch a three-year old for a day. He or she will run around with the energy of a pro soccer player, and then some, non-stop. In the course of his to-and-fro adventures, my Angus will fall down about once every hour and hit his head or scrape a knee or twist something. Much commotion, followed by a few deep breaths, a hug, and zoom, he's off again.

It's not just that he is less fragile than you or me. If we adults take a spill, after a suitable time of mourning, we will go and tell everyone what happened, and how it happened and what we're going to do about not letting it ever happen again and, say, remember how Uncle Fred broke his hip and Tom fell off the roof that time?

For us, every fall is a major event. For the kids, it's just a little speed-bump on the very fast, very fun road of life.

Kids, Santa Claus and Christmas with its traditions of singing and sharing and being together with family and friends go together like nutcracker soldiers and sugar plum fairies, like mulled wine and mistletoe.

Kids just naturally take to all the magic and mystery. But it's the adults who really need Christmas.

It's the adults who forget about being nice to neighbours. It's the adults who get embroiled in the petty politics of their bureaucracies and need to come up for air.

It's the adults, even the relatives, who forget their earliest Christmases and get all steamed over imagined slights and petty affronts.

It's the adults who are always getting tangled up in never-ending debates over tax increases and spending decreases.

And, above all, it's the adults who need Christmas and their kids, everyone's kids, to remind them there really is less to life than we so often insist there is.

Kids are here so we can grow up, keep growing if you prefer, after we're supposedly "all growed up." Christmas has most of us spending more time with our kids. Not the rationed "quality time" of time management legend. No, just more time: being there, reading stories, being there, singing songs, being there, decorating trees, but above all, just being there. If you remember the magic of Christmas as a child, share in that magic.

Of course, not everyone has been blessed with household juvenile units, let alone six (I am greedy). But as Scrooge proved on Christmas morning, it's never too late and there are lots of kids to go around. Nieces and nephews, cousins and friends. So, on their longest day of the year, share in their joy, draw strength from their simple faith. Remember, Christmas was and remains, always, a child's gift to adults. God bless us everyone. "

2003-12-02T13:42:00.000-07:00

I talked to a family member the other day and she asked me, "did you know that Ron was going to die? Because I didn't. I thought he was going to make it." I said I feared he would die, but then I added, "but there is *always* hope."

Our family was still reeling from the very sudden lung cancer diagnosis and then death of my cousin Lori Oddson when Ron became ill. And this won't be the last time cancer haunts someone we know and love.

I belong to a listserv called BrainTMR - about 800 people who share one thing in common - a brain tumour diagnosis. There are parents, wives, friends, children, sisters - all there because they, or a loved one, has a brain tumour. There are caregivers, survivors, there are widows and widowers, grieving parents and children and siblings and friends... and lots of people who have interrupted their lives and devoted time and patience to helping others walk this road. There are even doctors who spend countless volunteer hours providing information. The list is run by The Healing Exchange BrainTrust.

I have "met" the most amazing people on this list.

Here is the story of one couple, Kris and Tom McAlvanah. Tom is a lawyer and they live in Zephyrhills, Florida. When I first joined the list right after Ron's diagnosis with glioblastoma, I shared Tom's story with Ron. Tom is a successful lawyer, the city solicitor, and he went back to work two weeks after his craniotomy - he was still living and loving long after most people told him he'd be dead.

Ron and Tom, both 57 years old. Tom's wife Kris and I are the same age. Finding and sharing the experiences of someone who had survived this tumour well past the six-month median was important for both of us. Tom was one who helped Ron and I find hope.

I was devastated along with the rest of the list to learn of Tom's recurrence a few weeks ago. The day Kris posted to say that Tom had decided to reject further treatment and they were calling in Hospice, I cried for them, for all of us. I raged. I lit a candle and cried some more.

But, there is always hope. Two weeks later there was an email from Kris - "Tom's Miracle!!" Read about it in an article in their local paper, below.

Who knows how much time Tom has? I don't. You don't. None of us do. Remember this when cancer casts its dark shadow across the life of someone you love. There is always hope. -- Jodine

Couple Thankful For Recovery - from Tampa Bay Online
By JAYMI FREIDEN jfreiden@tampatrib.com
Published: Nov 27, 2003

"ZEPHYRHILLS - Three weeks ago, Kris McAlvanah shopped for a cemetery plot for her husband. Today, as she sits down to Thanksgiving dinner with family and friends, she will be thanking God for a miracle. In October, City Attorney Tom McAlvanah was given three months to live. A recently removed brain tumor had grown back, and doctors feared the worst. But after intensive treatment, a brain scan showed no measurable cancer, much to the surprise of his family and his doctors.... "

2003-10-17T10:15:00.000-07:00

Hello. It's been such a long while since I posted, and almost three months since Ron died. I have noticed that the Edmonton Sun's web site no longer carries his columns and I plan to put up an archive of his healthcare series, including two columns which were not published.

Our family has been tremendously supported by friends and family, and we continue to feel your warmth and comfort as we adjust to our lives without Ron.

Jenny and Angus have been attending a grief art therapy program at the Pilgrim's Hospice. We're halfway through and it's been very helpful for them. Rose and Morgan are both in school this fall - it's midterm season so they're cramming and cursing as they balance their business with school obligations. Rose is living on her own after managing to purchase a condo in Edmonton's downtown. Kevin has also just purchased a new condo in Calgary. Stephen returned to Taiwan and continues to work as an editor at the Taipai Times.

I attended a milk banking conference in San Jose last week and it was very informative and i'm looking forward to working on re-establishing our human milk bank here in Edmonton.

Fall has certainly arrived and winter will be here soon - after a very long period where the leaves seemed to hang on the trees - unusual for Edmonton - most of the trees are now bare, except for a brilliant orange/red Mountain Ash across the street. Oddly our huge mountain ash in the back yard is still green - it seems to do that, holding on to healthy green leaves and then loosing them all in a flash, before they've turned colour, when a hard frost comes.

Take care, all, hold your friends and family ones close and never miss a chance to tell them how much they are loved. Enjoy each day as it comes. -- Jodine

2003-07-28T06:07:00.000-07:00

The house is quiet now, all the visiting family is gone. The kids and I plan to travel to the West Coast this week to spend a few days on the boat, and we will scatter Ron's ashes.

The memorial was Saturday. Our friend Lance Beswick read a lovely tribute to "Ron the Friend" and Tom Crighton sent a lovely tribute all the way from Scotland. The eldest son Stephen wrote on behalf of the kids, "Ron the Father." Daughter Rose read "The Road less Travelled." Son Kevin played "Somewhere Over the Rainbow" and our little Jennifer wanted to contribute and so decided Friday night to learn "Ode to Joy" on her recorder - and she played it well. Wee Angus broke all our hearts with his sad, sad face, a tissue clutched in his fist, dabbing at his tears. Then he made us smile when he offered this soggy, crumpled tissue to Jenny to help her wipe a tear. Son Morgan read this poem:

Death Is Nothing At All
**************************
Henry Scott Holland

"Death is nothing at all.
I have only slipped away into the next room.
I am I, and you are you.
Whatever we were to each other, that we still are.
Call me by my old familiar name, speak to me in the easy way you always used.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me.

Let my name be ever the household word that it always was.
Life means all that it ever meant.
There is absolutely unbroken continuity....
Why should I be out of mind because I am out of sight.
I am waiting for you.....
for an interval....
somewhere near,
just around the corner.

All is well."

There have been a few words about Ron published in the last few days:

Ron's obituary is here:

http://makeashorterlink.com/?E29713965

A newspaper column by his friend Paul Whitney:

http://www.canoe.ca/Columnists/whitney.html

And I filed a column which appeared this morning:

http://www.canoe.ca/Columnists/graham.html

Stephen's words were more-or-less as he drafted them, below:

-- Jodine

Dad- a gift to his children.

Most of you will know Ron Graham for his talent as a
writer, for his keen mind and as a friend. For me,
Kevin, Rose, Morgan, Jennifer and Angus, we know him as
Dad -- and this, I believe, was his most important role.
Yet he was more than just my Dad. He was also my
friend, my colleague and my mentor.

He was a man of dreams and ideals. Always making
plans, whether those plans included boating on the West
Coast, trips to the golf course, or writing a book with
Jennifer about hugs. He was making plans until the
last minute; even in his final days he was planning to
go to Vancouver to see his brother, Mike, to see Rose
move into her new condo and to include me in an annual
Graham golf tournament once I returned from Taiwan.

He said children were a gift to adults, helping
grown-ups get past petty grievances and to focus on
what really matters in life. But for us children, he
was the real gift.

When I was 15 years old I moved to Calgary with my Mom,
Peggy, and stepfather, Charles. The hardest thing about
that move was being away from my Dad. But one of the
benefits of that change was that I learned at an early
age the importance of spending time together.
Despite the distance, we were able to see each other on
weekends, summer vacations, and later as partners in
business.

His passion for ideas and politics was contagious.
Attracted to these ideas myself, it was natural when I
started working in the family company, where I could
follow my Dad's lead by immersing myself in news. This
mix of business and personal affairs was not unique to
me and Dad. Rose and Morgan spent years working with
him, and Jennifer and Angus were no strangers to the
office from their time in diapers.

With such seamlessness between work and family, we got
to know our Dad in a way most children don't get to
know their parents. We got to see firsthand the daily
trials of running a business. We could see our Dad at
work and at play, virtually every aspect of his life,
even joining him for his Friday night social
gatherings. Simply by walking into his office we were
able to surround ourself in ideas -- his newspapers,
books, and of course Dad himself. We could see how a
normally quick-tempered man reacted with calm and class
when facing his toughest challenges, such as when when
finances threatened the family business several years
ago. And of course, his greatest fright, cancer, he met
with bravery and grace.

Of course, there were lighthearted moments as well.
After a bad shot on the golf course, Dad might blurt
out "I can't golf in these socks!" And he made us laugh
as a back-seat driver, waving away potential hazards
with a stroke of his hand and telling whoever was
driving to "watch out for that pole," as if it might
leap out on the street in front of us.

But his greatness as a Dad isn't best illustrated by a
single event or anecdote; it's all those little things
-- the tickle of his mustache when he gives you a kiss,
the sound of his voice when he says hello, and the note
inside a world atlas he gave me encouraging me to see
the places therein. Look at the photos of him with his
kids and you'll see a smile that radiates with pride,
affection and love. Although a man of words, it was
this smile that said the most.

He said that children helped adults grow-up, and as his
oldest son I was able to see that growth in him. As he
got older, his priorities changed and increasingly
focused family. He was fond of telling me how much he
enjoyed spending time with Jenny and Angus and giving
them their minimum four hugs a day and reading them
stories. Jennifer was able to add a precious word to
Dad's vocabulary -- gok, meaning she wanted a hug. He
died knowing that gok is what makes life worth living.

It would be easy today for us children to focus today
on our loss. But we should focus on our luck to have
had such a fine father. We can continue to pursue our
dreams and hopes as he pursued his. In reading his
columns over the years, I often hear myself in his
words. He is still alive in us.

Thanks Dad.

2003-07-24T06:27:00.000-07:00

Trust Fund/donations - although Ron and I had time to talk and begin to prepare for his death, we didn't expect it to come so soon and now that his obituary has appeared I am scrambling to set up a donation mechanism for Jenny and Angus's trust fund, and also to appropriately direct donations to brain tumour research and to re-establishing Edmonton's donor human milk bank.

More information will be posted here shortly. Thanks, -- Jodine

2003-07-24T06:14:00.000-07:00

Ron's obituary is in the Journal this morning:

Obituaries (07/24/03)
GRAHAM, Ronald Charles

We tell you with sadness that Ron Graham, wordsmith, devoted husband, father, friend, pundit, critic, champion, and unwavering advocate for his life's passions has died, of brain cancer at age 57.

Ron's sudden departure is mourned by his soul mate and wife Jodine Chase; his mother, Jean Graham; his aunt Myrtle; his brothers, Glenn (Marie), Rob, Mike (Suzanne); his beloved children, Angus, Jennifer, Morgan, Rose, Kevin (Erin), Stephen and Kevin and Stephen's mother, Peg; his nephews, Jacob and Andre and all their friends and families; along with legions of his good, good friends, especially the FLOCK. Making the journey ahead of Ron were his grandparents, Margaret and William Thomson; and his father, Randy Graham.

Ron was born in Port Alice, B.C. on the west coast of British Columbia. He remembered with great fondness his early years in Vancouver with his mother, grandparents and aunt and uncle. Ron introduced his family to the west coast as captain of the "Astrabelle" and then the "Gumption", his Monk Troller.

Ron and his mother and father and brothers traveled Canada and abroad as a military family, living in Cold Lake, Winnipeg, California, St. Boniface, France, Germany, and Ottawa. Ron was a graduate of York University with a degree in political science and history.

Ron was the founding editor of the Excalibur, York University's student newspaper. This early work led to a position in public relations with Great West Life in Winnipeg. Ron then went on to a career in advertising, journalism, news analysis and punditry here in Edmonton. First with the City of Edmonton, then as a freelancer, with Palmer Jarvis, and as creative director for Weber Shandwick, he guided and created many documentaries and pr and advertising campaigns and television series "Discovery Digest."

Ron was honoured to receive the recognition of his peers through two IABC Gold Quill Awards, two AMPIA awards, and many awards and recognitions from the Advertising Club of Edmonton. He was a partner with his wife in Chase Media Monitoring and MediaWorks West. He was active in politics and he indulged his passion for commentary with CBC and in newspaper columns in the Edmonton Examiner and the Edmonton Sun.

First and always Ron was a writer, a man who loved ideas, who had his own ideas, who had the gift of eloquence and passion, and who lived well, loved well, and shared well his big heart and his fine, fine mind. His goal was always to learn, to teach, to clarify and to expound, to provoke to action - to pique. Ron was an admirer and student of Nietzsche, Gershwin, John Stuart Mill, Eric Hoffer, Dorothy Parker, Michael Curtiz and Frank Capra, of Fred Astair, David Ogilvy, H.L. Mencken, Tom Bodett, Dr. Seuss and Ella Fitzgerald.

Ron was devoted to liberal democracy and the sanctity of the individual, and these principles guided his life. He believed that you cannot love a child too much. He poured his love into his family, and we are sustained by this.

Ron Graham: good man, good husband, good father, good friend -- goodbye.

A Memorial Service and remembrance of Ron's life will be held Saturday, July 26 at Riverdale Community Hall, 9231 - 100 Avenue, at 2:00 p.m. A reception will follow. Please dress for comfort and celebration. Children are welcome. There is a trust fund for Ron's youngest children, Jenny and Angus, care of Capital City Savings. More information can be found at http://www.rongraham.blogspot.com

Donations can also be made to brain tumour research at the University of Alberta Hospital, or to a fund for the reestablishment of Edmonton's Human Milk Donor bank, care of Breastfeeding Action Committee of Edmonton http://www.edmontonbreastfeeds.org Foster & McGarvey Limited, Funeral Directors and Licensed Crematorium, 428-6666. Owned & operated by the McGarvey Family since 1929.

2003-07-22T05:43:00.000-07:00

The house is full of people, flowers, food, cards, laughter, memories, and life.

Jenny and Angus - evryone asks how they are doing - are so young, they still mostly go about their day with their play puncuated by moments of sadness, confusion, and a child's version of denial. "Mom, is Daddy dead?" was Jenny's question of the day. All day long Rose and Morgan's friends came to visit and give their support. They stayed to help and it was good to have such vibrant young people in the house. Our friends brought their children to keep Jenny and Angus company.

Ron left us as he was being loaded into the ambulance - he stopped breathing and his heart slowed, and then stopped. EMS workers kept him breathing and kept his blood flowing with CPR while he was transported to hospital but they were unable to revive him, although they tried, as was his wish. Ron wasn't ready to go, he still wanted to fight. So there it was, in the end, he was gone and his only his body remained.

Hospital workers left me to be with him, and soon Morgan and my mom, and Jenny and Angus, and then Rose arrived. We called Ron's son Kevin, and Kevin talked to Stephen in Taiwan. One by one we went into the room where he lay still to say goodbye.

Jenny was adamant "I want to see him." Angus was a little afraid, but he was able to touch Ron's arm and say goodbye. I think the hospital workers were a little concerned about our desire to say goodbye in this way, but it was such a confusing and desperate time at the house as he struggled to breath and for the little ones, their dad had twice disappeared from the house, only to reappear smiling at them from a hospital bed.

This time he was still, as if asleep, on the bed. The little ones noticed right away that his hands and arms and face had cooled. Jenny gave him a little hug. Morgan sat with him for a while while I helped Jenny and Angus and Rose visit with his body.

We talked about how his heart and mind were gone from his body, and that we hold his heart and mind in our hearts and minds.

I spent some minutes alone with him.

It was sad, but peaceful.

Kevin arrives from Calgary today and Stephen will be here tomorrow, and they will also have a chance to say goodbye before his cremation. Then there will be a memorial, and later a wake.

Ron's newspaper, the Edmonton Sun, has written a tribute article to Ron, "Sun columnist Graham battled to the finish"

-- Jodine

2003-07-21T04:09:00.000-07:00

Ron left us today, suddenly, with almost no warning. He had a fine evening and a lovely supper.

Then he started to have some trouble breathing, and it scared him and he started hyperventilating. He relaxed some but it started again and so we
called 911. He stopped breathing while being loaded into the ambulance, and the his heart stopped and wouldn't start again.

Although he was weak in body, his fine mind was still as strong as ever right to the end.

Our visit to the hospital today confirmed that it was tumour causing his increased weakness and not shunt failure. We discussed going back on decadron to help him feel better and stronger but he didn't want to risk the vaccine trial not working (the decadron would weaken his immune system and blunt the expected response of the vaccine). Ron said, "What's's a few days compared with a lifetime?" He has always believed strongly in this type of cancer therapy; tailored vaccine treatment that targets each individual tumour cell.

We came home, had a peaceful evening, a later supper with the little kids, talked a bit about the trip on the boat next week, and then, before any of us expected it, Ron's journey was over.

I'll post funeral details soon.

Thanks so much for all your support and love.

-- Jodine

2003-07-20T11:40:00.000-07:00

My condition overall has noticably deteriourated in recent days. That is to say, I am very weak. I'm easily winded by any little exertion. Even little trips around the house, to the bathroom, and so on, are major expeditions. I will probably need some help on a regular basis from someone.

I am going for a CT scan in the next day to get more updates on my condition to see if improvements can be made. It could be my shunt failing, or it could be more swelling of the tumour.

Jodine and I are hoping to make it to Vancouver on Tuesday next week to visit my brother Rob and his family. Don't count on family picnics involving races, though!

I put another column up today in my healthcare series, on hospital food. I've written another that will appear a few weeks from now on having medicare cover pharmaceuticals.

That's all for today,

-- Ron

2003-07-17T11:01:00.000-07:00

This is an inspiring story for anyone -- Ron

Article from the Houston Chronicle...
"On Nov. 18, 1995, Itzhak Perlman, the violinist, came on stage to give a concert at Avery Fisher Hall at Lincoln Center in New York City. If you have ever been to a Perlman concert, you know that getting on stage is no small achievement for him. He was stricken with polio as a child, and so he has braces on both legs and walks with the aid of two crutches. To see him walk across the stage one step at a time, painfully and slowly, is an unforgettable sight. He walks painfully, yet majestically, until he reaches his chair. Then he sits down, slowly, puts his crutches on the floor, undoes the clasps on his legs, tucks one foot back and extends the other foot forward.Then he bends down and picks up the violin, puts it under his chin, nods to the conductor and proceeds to play. By now, the audience is used to this ritual. They sit quietly while he makes his way across the stage to his chair. They remain reverently silent while he undoes the clasps on his legs. They wait until he is ready to play. But this time, something went wrong. Just as he finished the first few bars, one of the strings on his violin broke. You could hear it snap - it went off like gunfire across the room. There was no mistaking what that sound meant. There was no mistaking what he had to do. People who were there that night thought to themselves: "We figured that he would
have to get up, put on the clasps again, pick up the crutches and limp his way off stage - to either find another violin or else find another string for this one." But he didn't. Instead, he waited a moment, closed his eyes and then signaled the conductor to begin again. The orchestra began, and he played from where he had left off. And he played with such passion and such power and such purity as they had never heard before. Of course, anyone knows that it is impossible to play a symphonic work with just three strings. I know that, and you know that, but that night Itzhak Perlman refused to know that. You could see him modulating, changing, recomposing the piece in his head. At one point, it sounded like he was de-tuning the strings to get new sounds from them that they had never made before. When he finished, there was an awesome silence in the room. And then people rose and cheered. There was an extraordinary outburst of applause from every corner of the auditorium. We were all on our feet, screaming and cheering, doing everything we could to show how much we appreciated what he had done.
He smiled, wiped the sweat from this brow, raised his bow to quiet us, and then he said, not boastfully, but in a quiet, pensive, reverent tone, "You know, sometimes it is the artist's task to find out how much music you can still make with what you have left." What a powerful line that is. It has stayed in my mind ever since I heard it. And who knows? Perhaps that is the [way] of life -- not just for artists, but for all
of us."

2003-07-17T10:22:00.000-07:00

Today's blog event was a visit by a respiratory therapist. She measured my ability to hold oxygen and observe my frantic breathing evertime I exhibit any modest amount of exercise. My oxygen levels during exertion fall to about 87, 88 per cent and they should be up around 97 per cent so I'll be getting oxygen. It's amazing that there are all these people out there with specialities who go around helping people in their homes. Our home care system here is so good. Yesterday was my last day of chemo (Tues. night) and blessed it is, if it is in there killing things. I haven't had much nausea through all this, so more blessings. Even my hiccups are less. -- Ron

2003-07-14T09:25:00.000-07:00

There are some new entries on my column web page. The most recent one is about doctors and communication and another one about what I have coined the "Duck Mountain Massacre."

After yesterday's golf expedition, which involved no actual golfing on my part, I'm feeling well today. I realize now how much easier it is to follow a televised golf tournament than it is the real thing. My stomach held up remarkably well considering three hours in a golf cart, three hours of regular driving, and so on. I'm grateful for that.

Last night another chemo treatment - it's hump day in a series of five, so only two to go.

The "competitors", Morgan, Kevin, Erin, and Morgan's friend Josh, were very very close, within one or two strokes of one another. All were right around 100 except for Kevin - he golfed a 90! We're going to pick up a cheap trophy and make it the first annual Graham open - cash price, $100. This won't turn them into professionals, will it? -- Ron

2003-07-12T16:45:00.000-07:00

Friday evening Ron and I went with the kids out to visit friends, Shauna Fraser and Fred Yackman. Our usual Friday night crowd. They live on an acreage near New Sarepta, southeast of the city. As we drove out we heard tornado warnings and reports that that a tornado had touched down in Westlock - but all is well at my sister Karol's farm near there.

We all enjoyed the evening. Ron started his 2nd round of chemo before going to bed - many people take the pills at bedtime and sleep through any nausea.

So far today Ron's had a good day, no vomiting, very little nausea. We ate breakfast with Jen and Angus at the Zellers cafeteria, one of our favourite breakfast places (really!) and then did a bit of shopping. Ron's right eye is still not focusing in tandem with his left and reading is difficult so he picked up a couple of books on tape - Ian Rankin's short stories, and Rudy Giuliani's book, "Leadership". -- Jodine

2003-07-09T21:49:00.000-07:00

Good news! Someone from Health Canada contacted Ron's doctor to confirm they were sending approval for the substance needed for his vaccine trial to open. It will probably still take a little while. Ron starts his second round of chemotherapy later this week - 5 days of temozolomide, which is taken as pills once a day. His white blood cell counts look normal, and that is the most serious side-effect. So over the next few weeks he'll have another chemo threatment and then start the immunoadjuvant therapy prior to his vaccine.

Some not-so-good news, although entirely to be expected - the MRI shows continued tumour growth and spread. Surgery can only remove what is there at the time and doesn't halt growth - only chemo, radiation, or vaccine or immunotherapy treatments can halt growth and kill the tumour cells. So we await these upcoming therapies with enthusiasm and hope.

And finally, more good news - Ron's 2nd acupuncture treatment was today. He is finding treatment helps him relax and it reduces his nausea and hiccups. He had some neck pain today that was also reduced. -- Jodine

PS - Ron looks forward to emails - he checks his mail every day. rgraham@mediaworkswest.com

2003-07-07T17:51:00.000-07:00

A good day, all things considered. Had a visit from the home care physiotherapist and the homecare nurse and all seems to be well. Still suffering nausea from time to time but that's to be expected. My headache was slightly worse than usual today but Tylenol seems to have come to the rescue.

Jenny and Angus's new summer nanny started today. Her name is Crystal. This should give the kids a fuller degree of attention through the rest of the summer than they've had from mom and dad, in as much as I am not quite as vigorous a participant in their games as I might have been.

-- Ron

2003-07-05T22:03:00.000-07:00

This newspaper article, B.C. woman responding to cutting-edge cancer vaccine is both a tragic and inspiring story. I'm not sure what the treatment is but it sounds similar to the vaccine therapy Ron will be receiving.

We have just returned from a great day at my sister Karol's house - she hosted a gathering for Herb's 85th birthday. The little kids swam in the pool all day. I went for an evening swim and hot tub. Ron had a good day, little nausea, no hiccups, and he alternated between resting on the couch and joining us on the porch. - Jodine

2003-07-04T13:17:00.000-07:00

I can't say enough good things about home care. A nurse visits weekly and she was concerned about Ron's increased nausea and vomiting, so she came around yesterday morning. The day before (Ron's acupunture day) he vomitted about a dozen times and so he was a little dehydrated. Instead of sending us to the hospital, she arranged for a saline solution that can be administered at night or for a few hours in the day whenever Ron isn't drinking enough liquid - it's not an IV - it is a subcutaneous (in the skin) infusion. It's comfortable and has a low risk of infection. So Ron slept last night with the saline drip and he was refreshed this morning.

Wednesday was the worst day and yesterday and today Ron has been able to keep his food down, which is good. We should get the MRI results monday.

Ron's vaccine trial continues to be delayed - some paper pusher with Health Canada in Ottawa hasn't gotten around to sending an approval letter to a US firm to allow them to release a substance needed to make the vaccine. Very frustrating.

This afternoon we'll head out for our usual Friday afternoon pub visit with friends. -- Jodine

2003-07-03T21:00:00.000-07:00

It's been a few days since I posted - Canada Day was quiet and a welcome break. I took the kids to the fireworks display; Ron wasn't feeling up to coming out that late at night. Yesterday Ron had his first acupunture treatment, which he is hoping will help alleviate his nausea, hiccups, general gastric discomfort, and also strengthen his immune system. He picked a good day to go - the most nausea he'd had in weeks. Today he is better and it looks like the nausea this time is caused by a gastric bleed - probably created by the decadron (a very powerful steroid with lots of side effects including stomach ulcers) and exacerbated by celebrex. Ron is no longer taking decadron, and taking celebrex instead both to control intracranial swelling but also because it has anti-tumour properties. (Nonsteroidal anti-inflammatory drugs used in cancer treatment - abstracts) He'll be off the celebrex for a few days while the bleed heals.

His MRI was Monday afternoon and we will have to wait a little longer than usual for the results because of the holiday in the middle of the week.

Ron wrote an email today and I'm enclosing an excerpt here:

"Yesterday I had another experiment on the frontiers of medicine, for us Westerners, anyway. I went in for an acupuncture treatment with Dr. Aung. I have been experiencing continuous nausea for many days now and yesterday reached its peak of throwing up - 10 times in one 24 hour period. It's better than hiccups but only slightly. Acupuncture is supposed to relieve things like hiccups, nausea, and more importantly, I think, generally improves the whole immune system by balancing the body. Anyway, always a skeptic, I managed to throw up right after the treatment was complete. It is very, very relaxing and so must be doing something good.

With so much sickness these are tough days for me and it takes a lot of willpower just to get through the simplest things. Nausea is crueler in the general sick feeling it leaves you with than the actual event of upchucking.

I get breast milk donations from several lactating mothers in the Edmonton area. Jodine, initially fearing the volunteer route might not yield enough milk for me, took some pills to help her relactate and began pumping her own milk.

The use of breast milk by a man in California recently had fairly atypical results - his prostate tumour shrunk to nothing and his PSA levels were kept very low and it was clearly established that it was the breast milk. Since they still don't have any miracle cures in the astrocytoma department store, I thought this was worth a shot. Of course I am hoping they do have a miracle cure, namely the vaccine which is being engineered for me and which I am taking in a few weeks time.

My doctor and my surgeon both approve of the breast milk - the surgeon is also the scientist working on the vaccine, Petruk - he says it'll help boost my innate immune system which needs to be strong for the vaccine to work.

This morning I indulged one of my cravings - a tall, cool glass of orange juice. I'm sure it won't stay down but it's worth it. Another side effect of my nausea is my taste buds seem to be shot and I can't stand the taste of McDonalds food anymore. Yesterday after the acupuncture we spent the afternoon with the kids at "Amma's", Jodine's mom, Rosemary. She blessed me with the gift of a shawl, the perfect instrument for keeping warm when one's thermostat is broken."

2003-06-30T22:53:00.000-07:00

Well, the MRI and blood tests (to check white blood cell count before next round of chemo) happened today. As always the staff at the Cross were exceptional, pleasant, helpful, and very skilled - especially when they install an IV line. (The IV line is used for the contrast dye given to enhance the MR images)

Ron is getting a lot of feedback on his healthcare columns - mostly good feedback from patients, but today he got a very nasty letter from someone inside the U of A. I think it's the nastiest communication from a reader ever, and that includes the ones he got from teachers when he noted the ski-hill exodus during spring break!

More later.

2003-06-29T15:43:00.000-07:00

Ron's second column in his series on healthcare is up on the Sun's website. Sleeping pills? But I was asleep (June 29)"

Here's an update on Ron's condition from his own mouth - from an email he went to his sons Kevin and Stephen:

"I've had a week of mixed progress - good things, bad thing, typical. Good things include walking around the block just about every day. Bad things - I totally exhausted myself by trying to walk about a kilometre one day. I mean totally.

Jodine bought me a tricycle, no kidding. But I found out all the instincts that allow one to safely ride a two-wheeler are counterproductive on a tricycle. I was terrified and traumatized.

I have had a lot of stomach illness the past week or two. Well, at least it kept the hiccups at bay and now I've discovered that I probably have an ulcer which is pretty common amongst people that take steroids but happily I think these things are cleared up with pills or an antibiotic pretty quickly. I shall soon find out.

I'm getting an MRI tomorrow and a blood test as mileposts for the final phase of our campaign to kill the tumour with the vaccine soon to be administered. And another round of chemo starts shortly, ugh."

2003-06-26T21:40:00.000-07:00

We spent the afternoon attempting to move the Airstream into the backyard through the wonderful new double, swinging gates that Morgan built. The opening is 16 ft. wide but the turn off the alley is too sharp. The trailer is back on the cement pad behind the garage. Oh well, we can always store it. Ron was a big help, sitting in the backyard and yelling instructions. He is feeling better today, less nausea, hiccups are gone.

2003-06-25T11:44:00.000-07:00

Oh, one more thing - we didn't go to the brain tumour support group yesterday because...it's next week. D'oh. -- Jodine

2003-06-25T11:31:00.000-07:00

Ron's newspaper has put up a home page where his columns will be archived.

Ron's nausea has abated somewhat. Ron currently takes a lot of pills. He's off the steroid, which reduces brain swelling (decadron) but he still takes dilantin to prevent siezures. So far he hasn't had any major siezures but he sometimes has what is known as a focal siezure - he smells phantom smells. He also takes his usual heart and diabetes drugs (although his blood sugar levels have been well under control - probably because he lost 60 lbs!), and a number of supplements - Salmon Oil (Omega 3), Ester C, Vitamin E (doc recommended 1600 mg!) Selenium, Folic Acid, Bromelain, Milk Thistle, Green Tea Extract, CLA, and more.

Last night Ron went for a short ride on an adult trike - like a bike but with two wheels at the back for stability. (And a large basket - Jenny enjoyed taking Angus for a ride up and down the sidewalk). Ron says it was hard because he was expecting it to ride just like a bike, but the balance is totally different - he couldn't get used to the fact that he didn't have to use his body to keep it upright. I'll figure out how to post digital pictures to this blog and then I'll put some up. The weather is beautiful right now, sunny and not too hot, and we have the perfect neighbourhood for walks for for biking.

2003-06-24T06:57:00.000-07:00

Ron had a restless night, tossing, turning, feeling nauseous. His last decadron pills were on the weekend and he had hiccups on Saturday, a few on Sunday, increased nausea on Sunday and Monday. I wonder if it's from the end of the decadron as his body learns to make its own steroid again? His doc doesn't seem concerned, though. Ron needs to be off the decadron because it is a powerful immune system supressor, and the vaccine therapy won't be effective if his immune system isn't working right. It also contributes to his muscle wasting.

Today the Cross is hosting a brain tumour support group, and we are going.

2003-06-23T13:00:00.000-07:00

Oops, Ron's regular Monday column has already overwritten the first of his healthcare series. A temporary link to the healthcare column is in place and the Sun's working on setting up a proper web page to archive Ron's columns.

Ron, Jodine and Tom had a healthy breakfast this morning at Santo's, the Italian-family-run cafe up on 118 Avenue and 65 Street. Rons' next MRI (his post-surgery diagnostic MRI) is scheduled for June 30th. - Jodine

2003-06-22T17:24:00.000-07:00

Ron's still recovering from his 2nd resection (end of May) and shunt surgery (June 4). He's just finished a five-day stint with temozolomide, a chemo agent taken by mouth. He's on a 28-day schedule - five days of the drug, then 23 days off. Ron has just finished writing the first four of a series of columns on Edmonton's health care system. Here's a link to the first in the series:
Family is important to patients.