Showing posts with label neuroblastoma. Show all posts
Showing posts with label neuroblastoma. Show all posts

Thursday, 28 August 2008

When the time is right

mainly sunny, temps 24

Another beautiful day, though not sure any could match yesterday. Perfectly calm all day, and hot. Michael went for a swim. Really, these late summer days are stunning. Cool at night so great for sleeping, and hot in the day. Some trees are already turning. We have a bright red maple in the field and out the bedroom window we can see a tree turning orange. The light hits it in the morning and it looks like amber.

Had to take Maggie to the vet yesterday afternoon. She seemed to be limping more than usual. She hurt he back left leg last winter - the joint - and it's been deteriorating. Now the other leg is getting bad because it's taking all the strain. He gave us new pills. Mostly for pain. But she seems happy. Tail wagging, nose wet and cold. Eyes bright. Great appetite. She hops around the pond and loves it.

It's an interesting choice we have to make. Do we stop her from running and playing and doing pond walks so that there'll be less strain on the leg? Or do we let her do those things and run the risk of more damage sooner?

It's the classic quantity of life vs quality. We're under no illusions, though we'd like to be.

After loads of talks we decided to let her have her fun, and we'll do our best to manage the pain. Hers and ours. The little pills help, though. Yum.

We faced a similar issue with my mother a few years ago. She'd had an episode with her heart and I was there. I called her doctor and Mom got very angry. Told me it was none of my business. That took me back and I struggled with that.

Then I realized she was right. She had all her marbles. She could make informed decisions about her own life. It might not be my choice, but I had to respect hers.

She died six months later, quietly in her sleep. At home. The way she wanted. Too soon for us, but we don't get to choose. Just support.

We're hoping Maggie will tell us when she no longer wants to hop around the pond. But for now, we're all enjoying the beautiful weather and the great late summer.

This is an especially fun time for me since the fifth book is set at exactly this long Labour Day weekend in Three Pines. So I get to see if my descriptions of the weather, the garden, the smells, the sights are accurate.

We're off to North Hatley and lunch with Bernard and Patricia Lemieux. They worked with Michael on the study into Neuroblastoma. His book is about that seminal study and the shocking results. So we'll have lunch then head off to their lab...both Bernie and Pat are medical researchers.

Wednesday, 9 July 2008

Salvaging the day

mixed, cloudy, rainy, cooler, temps 23

Much more livable today. Quite a relief. It rained last night but this morning was sunny and steamy. We went for our walk, went swimming, were lying out by the pool without much on (towels, thankfully) when Wayne drove in. Now normally he cuts the lawn on Thursday but he wanted to get it done before storms moved in.

So we scrambled to cover up - not wanting to give Wayne a heart attack - then headed in for breakfast.

Pretty good way to start the day. but it went south after that. Worked for about 3 hours on the book - doing quite a bit of re-writing, not just editing. This fifth book, as you'll see, is fairly complex. But the trick is not to make it appear all that complex, but allow the layers to naturally appear. And now that I know what those layers are, and the progress of each character, I need to go over the existing manuscript chapter by chapter and re-work it. shape it.

Each book seems to be different. This feels more like A FATAL GRACE/DEAD COLD. Not in content at all, but in the approach to writing it. but where I was filled with fear writing the second book - not uncommon apparently - this time I'm not at all. A little tired perhaps. Not of the writing, but of everything else. My own fault. Really do need to get better at saying 'no' to things. Though I am at least getting better, but room for improvement. But I do hate saying no when I got so much help when starting out.

Balance.

Then, just as I neared the end of a complete re-write of chapter 15 the screen went blank then came up, but the Word programme wouldn't work. The entire ms had disappeared. i stared at the screen, disbelieving. then I (what else) called Michael. Gallant, wonderful man. He dropped what he was doing (writing his own book) and hurried down.

It looked as though I'd lost at least an hours work - which was odd since I save at least every 10 minutes and I thought the machine automatically saved. But it was showing the last save as an hour earlier. I felt nauseous. Sat in a chair across from Michael trying not to ask 'How's it going', and remembering what his books about - treating and screening for Neuroblastoma in children. Whatever his diagnosis of my book and the computer, the news would never approach some news he's had to give.

it was strangely calming. But I was still upset and anxious.

He finally re-booted - and Word came back - and showed I'd only lost 10 minutes of writing...bascially the last page and a half. Which I could re-create.

As some of you know, I've also been toying with the idea of coming out with a cookbook based on the first 4 books of the series, now that all 4 will soon be in stores. Well today, after consulting with Teresa, the agent as well as the editors in London and New York we decided this might not be a good idea. Their reasoning was interesting...

-Cookbooks are a very competitve market
-to do it justice it would need loads of colour photos not just of the food described in the books, but of the 'three Pines' area - setting the atmosphere - and colour photos are expensive and could drive the price up to 50 dollars or more.

And the last point really cinched it for me. They explained that it was important this series not be mistaken for 'cozies'...and putting out a cookbook was a very 'cozy' thing to do.

I thought about that, and realized they were right. It wasn't, at this stage in the career development, worth the risk. The struggle with the series, especially in the UK, was to have people stop seeing them as comfortable, fluffy, village mysteries. there is an intentionally cozy element about them, of course, but with a philosophical, emotional, even spiritual underpinning that holds the series and characters together.

I'm happy that some people read it on just the 'cozy' level - but it gives me great pleasure when people read the books I actually wrote. And I suspect if you're reading this, then you know what I'm talking about.

So - while I think I see a higher-end more amazing cookbook than I was able to explain to the others, I do appreciate their point. And we can always do it later. The great thing is that these thoughtful women gave me their advice - but understood it's my creation, my career, my books. And they stood back and allowed me to make my own decision.

Was a time when I worked with bullies. never again. Honestly, there are lots of times I don't want to write, or get up in front of an audience or go into another roomful of strangers - when all I want to do is stay home with Michael and enjoy our lives together. Lots of things about this business I don't like or understand...But what I love so far outweighs them.

When that stops, I stop writing...or at least publishing. I think I'll always write about Gamache and Clara and Ruth and everyone in Three Pines, even if it's just for Michael and me.

Must go. emails to send and dinner to make. Be well. And for all of this days disappointments and stresses, it wasn't nearly as bad as some people's days.

Monday, 10 March 2008

Lots and Lots to Read

Clear, partly sunny, minus 12 degrees

I am still learning - Michaelangelo's motto

Michael here - subbing for Louise, while she journeys around the USA. Up till now, we've travelled together to all her events. It's been a ball. I've met so many marvellous people I never expected to meet: writers, editors, fans, booksellers - on and on. We've been around the world too - another highlight I never expected to experience. Now, we have friends all over the world. I'm sure we'll have even more after this week's tour.

But I'm home with Maggie and Trudy (our Goldens) doing taxes and saving us a bit of dough. We renovated our bedroom- bathroom and bought an addition to the property, so it's a good time to cut back. Everyone is, it seems. I'm sorry for all the grief people are experiencing as the economy dips and jobs are lost. Heartbreaking! I wish I knew what I could do.

Anyway, I'm writing a book too - on neuroblastoma - as I probably mentioned the last time I subbed here. One of the benefits for me is that I need to read classic articles on medical topics.

One such, by Alfred G Knudson, Jr., expounds his two-hit theory of cancer causation, something I've known about for years. But to read his articles describing it, the evidence it's based on, and the quality of his writing, his science, is a delight. The two-hit theory says that some cancers, particularly in children, arise after two genetic mutations. In hereditary cancers, in families, one of the mutations is inherited and is in every cell. Nothing happens unless another mutation occurs. In sporadic cases, two mutations need to occur in the same cell. This theory explains why hereditary cancers appear earlier, and can be multiple, while sporadic cancers are far rarer, occur later and are rarely multiple.

An example is retinoblastoma, a cancer of the retina of the eye. A specific retinoblastoma gene is known and there are hereditary and sporadic cases. This is the disease that Knudson studied in elucidating his theory. Well-known Canadian guitarist Jeff Healy, who just died in his forties, suffered from it as a child.

Now, I'm reading another classic by Hiroyuki Shimada in which he descibes the patholic classification of neuroblastoma into favorable and unfavorable histology.

The Shimada classification is used worldwide to characterize this disease. He showed that favorable histology was associated with an 87% survival, while for unfavorable histology it was only 7%. Again, the clarity of his writing, his thought, are breathtaking. What a privilege to actually sit and read them.

I use Entrez PubMed, the website of the US National Library of Medicine, where I can download recent articles, through my McGill retired status. But for older articles, like those written around the study I'm writing about, twenty to thirty years ago, I need help. And the help I get is from Joanne Baird and her co-workers at the Medical Library of the Montreal Children's Hospital, where I worked for two plus decades. I send her lists and after a week or two I receive a fat envelope with all my requests inside. I have about 30 waiting to be read. I'd better get going!

Be well. I hope to hear from Louise any moment telling me she's en route to New Canaan, CT.

Monday, 3 December 2007

He's in our prayers...

Our first winter storm, 20-30 cm snowfall, with high winds, probably -20 with the chill factor.

Louise is on the train home to Montreal and our new flat screen TV as I write. Overnight, the snow fell and the wind whipped. I don't know how snowfall can be measured with all the drifts everywhere, it's packed hard under my car, nothing on top, but I'm sure not going outside to try myself. I'm going to sit by the fire and listen to Baba Brinkman. Baba's a remarkable and highly talented rapper. He's a young man, late 20's, from Vancouver, whom we met at the Brisbane Writers Feastival in Australia in September. He has a CD called The Rap Canterbury Tales. I've just started listening to it and it's fantastic. So this will be a short blog.

I was well fed yesterday. Home-made carrot soup (Tutu), Lasagna (Puni), Canelloni (Alicia) and meringues (Tutu). Such fun to meet up again, get caught up on news, show them our home (under some construction) and eat. I was stuffed, but surprisingly had no trouble eating more of the leftover lasagna and canelloni later.

A parent whose three year old son is battling neuroblastoma kindly sent me two articles about neuroblastoma screening. I wrote him back, mentioning they were about the neuroblastoma screening study my book's about and thanked him for them. He had read quickly and thought Louise was writing about neuroblastoma. She's certainly offering me huge encouragement, sound advice and the voice of experience as I struggle toward my first forty thousand words.

I think my circulating hot chocolate level may need a boost...