it's all official now

Dear Everyone,

I just got the call. I need to be at the hospital by 6:15 tomorrow morning. My surgery is at 8:00am until 3:00pm (gulp). I am my surgeon's only patient tomorrow (the person who called said this like it was unusual). I'm happy to know that I will have his full attention.

I am likely to be on Twitter until they take away my phone. Tim will update as he has info. You don't have to be on Twitter to read updates. You just need to click on the links below:

Laurie's Twitter feed.

Tim's Twitter feed.

I'll be in the hospital for a few days. Once I'm out of post-op and in a room, I'll have wifi access and Tim will bring me my phone and computer. 

If you're in Ottawa and thinking of coming to visit, let me know. Visiting hours are between 3:00 and 8:00pm but I'm only allowed two people at a time, so message me before coming.

Thanks so much for all your messages of support. Each time someone reaches out to let me know I'm in their thoughts, it lifts my spirits.

I am vacillating between a surreal sort of calm and waves of anxiety. I feel like I should be getting ready but I think, for so many reasons, that's hopeless.

I, however, am filled with hope. I am planning my life on the assumption that the tumour will be safely and completely removed with no complications. 

See you on the other side.

love,

Laurie

fun facts about Laurie's brain surgery

I will be having surgery, next Tuesday, November 27.

The exact time is to be confirmed but I will be going to the hospital very early in the am. The operating room is booked for seven hours but some of that time will be bringing me in and out of the anesthesia (I'm guessing at this because the surgeon estimated the procedure would be five hours long).

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If you don't want to know the gory details, I understand completely. Why don't you go over to Frivolity? It's a much for fun place. Come back any time you like.

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I will have six different tubes in me in various places in my body. This will be uncomfortable when I wake up.

Surgery to the back of the head is sometimes done with the patient sitting up. I don't know if my surgeon will choose to do it this way.

He will have to cut through my neck muscles to get to the cerebellum.

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You can read about the rest of the steps in this very helpful article from Johns Hopkins. The biggest difference is my bone will be tossed and replaced with wire mesh to avoid infection. You shouldn't be able to tell - it won't feel very meshy from the outside.

My surgeon does what his colleagues laughingly call a "California hair cut." He spent time at Stanford University, where they treat many celebrities and try to shave as little hair as possible. It will be nice not to be bald again (also, this makes me like my surgeon even more).

I think I would have liked a few more days to prepare and nest but I'm very relieved to have a date and to be moving forward.

call me George-Michael

We've posted a short clip on Frivolity. In this one Andrea and I talk about overcoming our  obstacles, trying new things, taking bold steps and learning how to have fun.

There is also an Arrested Development analogy or two.

new post at Frivolity!

I have a new post up on grabbing the moment over at Frivolity, called walking the talk:

On Sunday night, my spouse asked me to join him and my youngest son in front of the fire. I passed (my exact words were “Who’s going to do the dishes?”)

A few minutes later, I heard my 9 year old’s voice from the living room. Suddenly, I was very aware of the irony that I had just launched a site about doing what makes you happy. Really, what did it matter if the dishes stayed dirty? The dishes in my house are always dirty.

You can read more at and check out our new site and podcast at getfrivolous.com.

going with doors number 2 AND 3

I've been persuaded to have surgery, followed by targeted radiation. This will be my best shot at getting it all.

I really liked the surgeon we met yesterday. He was patient, clear, forthcoming and took lots of time to answer our questions. I've decided to trust him.

I was feeling pretty devastated yesterday. I was hoping hard that the route I wanted to go would also be the best route. Who wouldn't want the treatment that purports to have few side effects and doesn't involve having your head cut open?

But I went for a lovely walk with a friend and then slept for 11 hours last night. Today, I feel much more at peace with my decision.

Although I'm still a little freaked out.

One cool thing: The surgeon says that if you rate the difficulty level of what the kinds of surgery he does from 1-10, mine will be a 3.

Makes it sound pretty simple, for brain surgery.

watch and listen: i get tattoed

The most recent episode of "Get Frivolous" is up over at Frivolity, the site of my new project with Andrea Ross.

This is the one in which I get my new tattoo. You can listen in before, during and after. Watch the video (Andrea put together a slide-show with photos taken by my friend Helen Berry) and/or listen to the audio on it's own.

It takes less than twenty minutes and it's good fun - if I do say so myself!

crapshoot

Last week, Tim and I met with my new radiation oncologist. Dr. C is a walking talking Gallic stereotype, with a rumpled white coat and a turned up collar. He was full of sighs, snorts, "Boff!"s and very eloquent shrugs. Both Tim and I observed that the only thing missing was a Gauloise emerging from between his lips.

Not my radiation oncologist. This is the French actor Gerard Depardieu, to whom Dr. C. bears a remarkable ressemblance. (photo IMDB)

After asking how it was that my tumour had been found (he was surprised that I had asked for the MRI), Dr. C shocked us by putting three options on the table:

Whole brain radiation (which he noted is still the standard treatment for brain tumours in most of the country).

Surgery (which is possible because my tumour is on the surface of the cerebellum).

Cyber Knife radiation treatment (which is the only option we were expecting).

Dr. C offered no advice as to which we should choose. He told tell us that there are no clinical trials and no longitudinal studies to guide us because most patients with brain tumours don't live enough to be studied longitudinally. On the other hand, it's really unusual for a patient to have only one small tumour.

The size and singularity of my tumour are very positive things but they make it really hard to base my decision on anyone else's experience. For example, whole brain radiation (WBR) "treats the whole brain" (as Dr. C helpfully pointed out when I asked him the advantage to that treatment). The rates of overall recurrence are lower with WBR. However, the treatment also causes permanent alopecia and can cause permanent cognitive damage. It seems to me that it's a bit like taking a sledgehammer to hit a single nail - you end up needlessly damaging the plaster.

I've decided that WBR is off the table for now (keeping it as an option to treat future tumours).

With surgery it might be possible to clearly cut out the tumour. However, it's still surgery with all it's risks, pain and side effects. 

Cyber Knife has very few side effects (in the words of Dr. C "almost nil."). There is a risk of necrotic (dead) tissue needing to be removed surgically in a few months' time.

Dr. C wasn't condescending or impatient just painfully honest. I am once again navigating the land of the cancer unknown. Perhaps the surgeon to whom I'm being referred will have some insight.

To recap:

WBR is the standard treatment and may prevent future recurrences. However, I have no indication that there is another tumour developing soon and WBR comes with some nasty, permanent side effects.

Surgical techniques are being refined all the time. A surgeon may be able to more clearly extricate the tumour. However, I do not relish having my skull cut open and the subsequent pain and recovery time.

Cyber Knife is reported to be as effective as surgery, painless and with few side effects. On the other hand, some of those reporting this are the owners of the company. I don't relish the possibility of necrotic tissue but I do love the idea of walking away after a 40 minute session.

I kind of wish I had a three sided coin. Or a crystal ball. And then there is this guy in Italy with a brain tumour who hacked his medical records, posted them online and got advice from all over the world.

I wish I knew how to do that.

Meanwhile, I have a CT scan and Cyber Knife mask fitting on November 9th, an MRI on November 11th, a consultation with a surgeon on November 13th. I have a Cyber Knife appointment booked for November 23rd, in case that's the route I choose to travel. All these dates have been booked in the last couple of days. I still don't know what I'm going to do but it feels good to be moving forward.

ebook!

Not Done Yet is now available as an ebook on Kobo (other e-retailers to follow). 

I still have lots of hard copies to sell but this is cheaper for you and no shipping!

pondering options

I know that some of you are waiting for a post about yesterday's appointment. I do plan on writing a longer post but have been too busy with lots of good things to get to it.

For now, I'll just say that I'm fine. I was actually offered options at my appointment and have to make choices. This is not bad news, though, just not what I expected. We're doing lots of talking and reading and re-visiting. The radiation oncologist has referred me to surgeon for consultation. I'm still going into the Cyber queue and one way or the other will be dealing with the tumour in 3 to 4 weeks.

Stay tuned for a more detailed post in a day or two.

the raven and the sun II

photo: Helen Berry

I think it's appropriate that, at this stage of my life, I should re-affirm my love of the raven myth. 

embracing Frivolity (a new project)

I'm so happy to announce the birth of the Frivolity project! You can find us over at getfrivolous.com. 

Here's an excerpt of my perspective on  "Why Frivolity?"

A couple of years ago someone wrote a review of my book that really pissed me off. The reviewer took me to task for seeking and finding pleasure in things irrelevant and frivolous (I’m shamelessly paraphrasing here). I threw the review across the room, where it sat for several weeks (Those of you who know me will will understand that this is literally true. Housekeeping is not one of my strengths). 

Then I got to thinking about why it’s actually OK to be caught seeking fun and happiness. We all have lists of things we’d like to do “some day”. We write them down in notebooks, scribble them on napkins (or is that only in the movies?) or keep them locked away inside our brains. That’s certainly what I did – until I was faced with a life threatening illness and was suddenly very motivated to make “some day” happen “right now.” 

From spending the day at the art gallery to writing a draft of a novel to getting my first tattoo, I began to ask myself “Why not now?” 

This new blog and podcast are all about finding ways that Andrea (my co-conspirator) and I, and any of you who want to play along, can embrace the frivolous, take risks and have fun. In my opinion, the world could use a little more frivolity.

Come listen, watch, look, read and share. Send us your ideas, responses, images and stories. Join us in our Frivolity!