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!

sometimes you confront it

photo: Andrea Ross

A few years ago I wrote a list that I turned into a blog post called "whiskers on kittens." This is the opposite of that post, because sometimes you need to deal with fear head on:

Dying.

Getting old. (I'm aware of the irony of this.)

Heights.

Being a terrible writer and not realizing it. (I had a dream last night that a former boss morphed into my father and he/they said, "You don't write. You just throw words on paper.")

Dementia.

Being irrelevant.

Going blind.

Fears too big to name. (They involve loved ones and I'm just not going there.)

Being at a cocktail party with nothing to say.

Being forgotten.

Birds.

photo: Mark Blevis

time is still relative

November 1st.

That's when I'll meet the radiation oncologist, ask some more questions, get more information and most i mportantly - MAKE A PLAN.

This morning, I spoke to Rejeanne, the nurse who works with my medical oncologist. I must have gasped when she told me the date of my appointment because she said (and kindly),  "If Dr. Gertler thought the appointment needed to happen sooner, he would have said something."

And so I wait. November 1st is only a little over 2 weeks away. 

It feels like an eternity.

have you read "Not Done Yet"?

Have you read this book yet?

I think I have all the remaining copies of Not Done Yet : Living Through Breast Cancer in my attic. I'm selling them for $25 (tax included) plus shipping. 

I'm told it's a pretty good book. You should read it. Or give it to someone you love.

don't freak out

Have you heard the supposed ancient Chinese curse, "May you live in interesting times?"

Things just got a little more interesting around here.

The routine MRI I had on October 5 revealed a 20mm lesion in my cerebellum. 

Photo: mybrainfacts.com

My oncologist and another from whom I got an unofficial second opinion are very optimistic that this thing can be easily zapped with stereotatic radiosurgery (also called Cyber or Gamma knife surgery), which isn't surgery at all but a very precise form of radiation. Treatments are few (between 1 and 5 sessions) and cause very few side effects. 

It's a really weird feeling knowing I have a cancerous mass in my brain. It does explain all the falling down (the cerebellum controls balance). I've always been clumsy but the last few months have been ridiculous.

I'm having a harder time dealing with the fact that the cancer has returned. I've been in remission, or NED, for five years. It's become easy to entertain the fantasy that the cancer was gone for good. My oncologist has even mused about that possibility.

This relatively little (I'm assured it's small by medical standards) tumour is a sobering wake-up call. I have Stage 4 breast cancer. That is always going to be true.

Still, I continue to be lucky. Herceptin came onto the market in time to save my life. Ottawa is only one of three Canadian cities to have Cyber knife technology and that is only as of this summer. Time is once again on my side.

So please join me in not freaking out (or in only freaking out a little bit). Life around here continues as normal (or at least our version of it). The day after finding out about the tumour I joined Weight Watchers. How mundanely optimistic is that?

I'll know more once I meet with the radiation oncologist. Meanwhile, I really want this t-shirt:

I'd order it, except that  Ihopefully would only get to wear it a couple of times before I'd have to change "have" to "had." I don't want to waste my money.

limits on multi-tasking (on not doing pelvic lifts while I brush my teeth)

You'd think that since I don't have a full-time job (or even a part-time one) and both my kids are in school that time management would be a breeze, yet I still find myself struggling to get things done.

Part of that is pure procrastination (it's a slippery slope from checking my email to reading 10 tabloid stories someone linked to on Facebook). 

Part of it is feeling overwhelmed (where to start on a large project? which project should I work on first?).

It's also that I have changed the way that I live my life. Before cancer, when I worked full time, it seemed that every minute needed to be spent in a productive way. I tore myself out of bed in the morning as though jolted by a starter pistol and collapsed back in long after I knew I was tired. I answered emails while watching TV, talked on the phone while I played with my kids, read over documents while I rode the bus. There were seldom any truly quiet moments.

Cancer pushed me off that treadmill. In some ways I miss it but in lots more ways I don't.

While I still keep lists obsessively, I try not to obsess over getting through them. And over the last few months I've begun to embrace the efficiency of doing one thing at a time and doing it to the best of my ability. I still have a long way to go.

Every time I read a newspaper online or leaf through a magazine, I am urged to multi-task in every possible way. "Give yourself a facial while you make dinner!" "Fold laundry while you return calls!" "Tighten your butt muscles while you brush your teeth!" It all feels exhausting to me.

I am very fortunate to have been given the gift of time. I'm working at making it work for me. I want to focus on playing the game, not worrying about whether I'm going to drop the ball.

brain fart

Today, I set myself up to do a phone interview with an author based in Los Angeles, California. 

The whole thing was set up through her publicist and we'd worked out a time of 12:30pm PST for me to call.

Counting the three hour time difference in the wrong direction, I came very, very close to calling her at 6:30am PST. This would have been bad, especially because she writes in her memoir that she is most definitely not a morning person.

This is embarrassing. The publicist first suggested an earlier time and I balked because it would be "the craziest possible time in our house, as we try to get everyone out the door." The time suggested had been 11:00am PST, which really would have been 2:00pm EST, which would have been fine.

I really should know better. I spent three years on the West Coast, in the heart of PST-land. I also spent 15 years working for national organizations and was adept at working out time zones.

My brain is rusty.

The interview is really scheduled for 3:30 EST. I will be in the middle of my afternoon slump but at least I know I'm ready.

keep your head down

It's begun.

The annual barrage of pinkwashed crap and pinxploitation is in full swing.

And I really don't feel like talking about it. What I want to do is stay home for the rest of October and not open any emails until this month is done. Enough already. Now that it seems that more people can relate to my pink ribbon anathema, why haven't the pitches slowed down or the products become harder to find?

I want to make like an ostrich and just wait until it all goes away.

Instead, and to spare myself the need to get worked into a lather, I'll direct you to the right sidebar of this blog. Scroll down to the "labels." Click on the one marked "don't buy pink crap" (or just click on this link to go there directly) and you can read rants, observations, a little analysis and links to the blogs of some compadres.

Speaking of compadres, these great bloggers are kindred spirits, when it comes to pinkwashing:

i hatebreastcancer

Uneasy Pink

Gayle Sulik (author of Pink Ribbon Blues)

The Assertive Cancer Patient

Nancy's Point

and, of course, the late, great Rachel of Cancer Culture Chronicles

I'm sure I'm forgetting some bloggers and I'm sure there are more that I don't know. Do you have others you could add to the list? Let's make an anti-pink blogroll!

(As an aside, I note that all but one of these blogs is written by women with metastasis. I will be writing more about living with mets amidst the pink ribbons in the next few days)

I also can't resist another chance to put in a plug for Pink Ribbons Inc, the movie that explains it all and does it very powerfully.

Updated to add:

 A great article from the web site xojane: I Hate Breast Cancer 'Awareness' Month.

October:  Breast Cancer Awareness Scam Month by Suzanne Reisman. Suzanne writes a post for BlogHer on this subject every year. And her words meant a great deal to me in October 2006 when the shock of a pinkwashed world first hit me. I even quoted her in my book!

ambiguous ambivalent

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

flip side

I read enneagrams the way some folks read horoscopes (if you're into such things, I'm a textbook 1). . Here are two that have arrived in my inbox this week:

"If you become unhealthy, a negative feature of your personality is the tendancy to become bitter, harsh and inflexible. Watch yourself for this today."

"Remember your outstanding healthy qualities include caring deeply about the dignity of your fellow humans and maintaining strong personal convictions. Notice how you express these today."

My best. And my worst. Summarized very neatly.