somehow, i thought

I thought it would all happen more quickly than this. I thought if I had no complications, then I would just heal.

I thought that "three days in the hospital and two weeks puttering at home" meant that by the start of the third week I would be running errands, writing, going for walks and yoga and that I would be putting this behind me.

It's not happening that way.

I am healing.

I'm just not very patient.

My head still hurts. Sometimes a lot.

I am more tired than I could have imagined.

I still feel stoned, even when I have taken nothing for the pain. My brain is just not working properly.

And my fingers don't seem to want to type what my brain tells them.

It has been three weeks since my surgery and it really doesn't feel like it was very long ago at all.

Except that I'm less patient now.

Which is probably a sign that I'm healing.

I'll get there. Of course I will.

Today, I just wish it were easier.

melancholy meme

These are questions from the Proust quiz in a recent issue of Vanity Fair magazine. I stole the idea from a friend (she did it on Facebook, so I won't identify her here) and I've been thinking of it ever since.

It was interesting to do. My answers reflect the fact that I have been in a somewhat melancholy mood of late. I tried to answer without censoring myself.

Feel free to answer the questions in the comments or to link to your on blog if you do it there.

What is your idea of perfect happiness?
Being somewhere beautiful, being with someone I love. Happiness can come out of nowhere. I am better trained to notice it now.

What is your greatest fear?
That I will die and my kids will forget me.

What is the trait you most deplore in yourself?
Lack of discipline and the fear that causes it.

What is the trait you most deplore in others?
Intolerance of difference.

On what occasion do you lie?
Sometimes to protect others' feelings. Occasionally to protect myself.

What is your greatest extravagance?
It used to be shoes. I do like nice glasses but that's only every couple of years. I'd have to say that now, it's eating out and yarn.

What is your current state of mind?
A little fragile, anxious and blue. Figuring out how to get past it.

What is the quality you most like in a man?
Intelligence. The ability to laugh at himself. And if he's in love with me, that's pretty attractive, too. OK, so that's three. I did say that I lack discipline.

What is the quality you most like in a woman?
Intelligence, strength and a sense of humour.

Which words or phrases do you most overuse?
Lately, it's "Oh, for pity's sake!" Trying to excise the potty mouth.

When and where were you happiest?
No particular moment in time. In PEI with T., in London with S., at the family cottage, in the arboretum with the dogs...

Who are your favorite writers?
Depends on my mood. John Steinbeck, Jane Austen, Joseph Boyden, Sarah Waters...and lots of mystery novelists too.

Which talent would you most like to have?
I wish I could sing.

If you could change one thing about your family, what would it be?
I'd make us all appreciate what we have.

If you died and came back as a person or thing, what do you think it would be?
A well-loved dog with a stay at home alpha human and a family that loves me, walks me and feeds me well. In other words, I would come back as one of my dogs.

What do you dislike most about your appearance?
Where to begin? Trying to be healthier in my attitude about this. But my weight (exacerbated by lymphedema) is getting me down lately. And it would be nice to have my breast back.

Where would you like to live?
Somewhere where there is no winter.

What is your most treasured possession?
If you agree with me that the dogs are family members and not possessions, then I guess that would be my raven ring.

What do you regard as the lowest depth of misery?
Being 38 years old and learning that your liver is riddled with tumours and you don't have long to live. Needing morphine to control the pain for months. Having your heart ache on behalf of those who love you, especially your kids.
And life really is pretty good when you climb out of those depths.

What do you most value in your friends?
Loyalty, love and and humour.

What are your favorite names?
Sacha
Daniel
Katya

What is it that you most dislike?
People who think they have already learned all there is to know. And cancer. I don't like cancer either.

What is your greatest regret?
Not maintaining friendships with some people who were very important to me.

How would you like to die?
Painlessly and after having lived a long life.

What is your motto?
Be good.

not imaginary

It's a running joke in my house, "Mama's talking to her imaginary friends." They're the people I've met online over the last few years, through blogging and various social networks. Of course they are very real people and when bad things happen to them, I do feel it keenly.


S., though, was someone I met in person - at the Conference for Younger Women Affected by Breast Cancer in early 2009 - and with whom I continued to connect online. We first connected because we both had metastatic breast cancer but soon realized that we had much more than the cancer in common - a progressive outlook, quirky gifted children and we both chose to expressive ourselves in creative ways. Unlike me, though, S. was a bona fide artist who used fabric as her medium.


S. was about my age. She had been diagnosed at Stage 0 but the cancer seemed to have quickly metastasized (was it just very aggressive or had something been missed? This was one of the things we discussed over dinner on the evening we met). We ended up spending all of our free time together, during that long week end in Atlanta - every coffee break, meal and evening. We even grabbed lunch together before grabbing our shuttle to the airport.


We stayed in touch after we got home, exchanging the occasional email and through the Care Pages that S. set up to share news with family and friends. She wrote to me about her latest art project (which integrated images of cancer cells), her daily life and a wonderful trip that her family took to Costa Rica. She also shared her frustration with the fact that no treatments seemed to slow the progression of her cancer.


Last week, I received a notice that S.'s Care Page had been updated. I logged in and found a message from her husband: saying S. had had moved from treatment to hospice care. Yesterday, he contacted us to say that this remarkable woman had passed away in her sleep.


I've run out of words to describe my sadness and the grief I feel on behalf of her family. Another child has lost her mother. It's all so wrong.


Over the week end, Zoom remarked that having cancer brings a lot of people into your life but takes a lot of them out, too. And, the truth is, I would do nothing differently, even knowing I would face loss and be forced to confront the possibility of my own death. The people who have come into my life - online and off- since my cancer diagnosis have improved my life immeasurably. I wouldn't trade that for anything.


But, right now, my heart is aching.

healing

Well it's not been linear but I definitely am healing well.

The drugs have made it hard to concentrate and type but things are progressing well. Today is the first day that my fingers and my brain seem to move more in concert.

And now I have treatment tomorrow.

So please don't worry if I don't blog. I'm doing fine - and expect to get back into regular writing next week.

Thanks so much for all the love and support from near and far.

It means more than I can say.

writing your way through breast cancer

It's been two days since chemo, so I feel lousy and have the attention span of a gnat.

It works out well for me, therefore, that I have something I've been meaning to share with you all for a while now.

I really like the Philadelphia based organization Living Beyond Breast Cancer. I've been fortunate enough to attend two of their own conferences (one called "News You Can Use" and one specifically for women living with metastasis) and the Annual Conference For Young Women Affected By Breast Cancer, which they co-sponsor (last year's was in Dallas and I'm applying for a grant, in the hopes of being able to attend in Atlanta this year. It will be the 10 year anniversary of the conference).

A little while ago, LBBC contacted me to see if I would be willing to be interviewed for their Winter 2009/2010 newsletter about "writing your way through breast cancer." I didn't hesitate, as this is a subject about which I am passionate.

You can read the interview on their web site. I am also please to not that they have listed "Not Done Yet" under the heading "Creative Coping: 10 Publications To Motivate You."

Judy

I'm sure she did not "go gently into that good night." 


Judy was a fighter, a woman whose Facebook page stated "I love my life." And that was life centered around her family and friends, especially her 10 year old son and her husband.


I first met Judy (and I do feel like I knew her, even though we never met in person) when 20 or so women were brought together by Susan to form the group blog, Mothers With Cancer. It was clear from the outset that Judy  would become a particular friend.


She had a passionate sense of social justice, a dark sense of humour and a straightforward manner that endeared her to me immediately. Like me, she loathed the pinkwashing that takes place every October. We even both had dogs who were considered part of the family.


Judy never stopped being angry about cancer. She railed against the unfairness of a world that afflicts so many of us with this evil disease.


At the same time, she never stopped appreciating the beauty in the world around her - in her environment, at work and in her family and friends. She never stopped finding things about which to laugh.


It's because of Judy that I applied for Little Pink Houses. I know that her family's week with the organization was a glorious experience (and so was mine). We often said how great it would be to meet up in person. Jeanine from Pink Houses did meet both of us and told me she is confident that we would have liked each other as much in person as we did online.


Judy, my friend, I miss you already. My heart goes out to everyone who loves you, especially Nate and Frank. Many, many, many people mourn your loss and celebrate your life.

Deanna: a tribute

Brilliant.


Funny.


Committed.


Accomplished.


Artistic.


Strong.


Insightful.


Perceptive.


Inclusive.


Accepting.


Activist.


Loving mother, daughter, sister, friend.


I struggle for the words to write you the tribute you deserve. You are loved, admired and missed by so many.


My heart goes out to your family. I will hold you in my heart forever and continue to be inspired by you every day.


http://deeupdates.blogspot.com/

hello again

I'm back.

All is well here, I just used up all my writing mojo in November writing a novel (more on that experience in a future post).

Then I took a few days off to hang out with a wonderful friend and, well not write for a few days,

And while I was gone from the blog November 24th (the anniversary of my diagnosis of metastatic breast cancer) and December 2nd (the anniversary of the night I found the first lump) came and went. I noted both events in passing, took the time to breathe deeply and be grateful, and then got on with my day.

It's been four years since I found the lump. It's been three since the cancer spread to my liver. And it's been two and a half years since my first clean scan.

I had an appointment with my oncologist yesterday. I had nothing to tell him. He said, "Shall we keep dragging you in here every few months just to say 'hi'?"

I readily agreed.

I have chemo next week. They've been building a new treatment centre for what seems like years. I have often jokingly pointed in the direction of the new building and said, "They're building that for me."

Yesterday, I discovered that the new building is open and the chemo room has been moved. No more listening to the sounds of construction during treatment. No more listening to the intimate details of the constitutional issues of the patient beside me. There will be a little more light and a little more room and hopefully, a little less noise.

I'm kind of excited.

And yes, that is somewhat ironic. I have lived long enough to be excited about getting chemo in the new building.

home!

Best news:
Clean margins. Clean MRI. Home to heal better.

Extremely tired and drugged but pain meds managing.

It was cancer. Very like original adenocarcinoma from 2006 (i.e it's breast cancer in my brain). Full pathology in a couple of weeks. 

Next treatment will be one dose of cyber knife radiation in a couple of weeks.

I have herceptin mid-December, not sure if anything will change on that front.

Writing is very hard but I am doing well.

More on whole experience soon.

Thanks to you all so much.

speaks to me

Thank you xkcd.

i've never liked rollercoasters

Are you sitting comfortably? This is going to be a long one.

In late August, during a regular appointment with my medical oncologist, I was informed that my latest brain scan revealed a tiny spot on my cerebellum, exactly where mytumour was in 2012. I was going to write that I was blind-sided but I really wasn't. There had been lots of little signs over the course of the summer that my balance was compromised. At one point, while I was with my family in New York City, I had stood up and almost fallen over, catching myself against a wall. I'll never forget the very quick glance I exchanged with Tim, before carrying on with my day. A new tumour was something I didn't want to think about and I had fairly successfully succeeded.

“I'm never going to lie to you,” Dr. G. said during our regular phone appointment, before delivering the news. He also reassured me that the spot was tiny and the situation was “fixable.”

I told family via email, as well as close friends that I had a new tumour. We told our kids at dinner that night. I was outwardly calm but inside, I felt devastated. Although I had been reassured that this tumour could be easily disposed of, I felt like it was the begin of the end. If some stray cells had escaped treatment and metastasized so quickly, then others would surely follow. This new spot might be treatable but the next could easily – even likely – be some place treatment couldn't access. I'm so afraid of this possibility that I've never been able to put it into words (I have notes for a blog post entitled “my worst fear” that I've never been able to publish).

A week after this phone call, Tim and I went to the cancer centre for a brief appointment with my medical oncologist, followed by the radiation oncologist who'd treated mewith the Cyber Knife after conventional surgery (we refer to him as the Gallic Shrugger because of his eloquent non-responses when we were planning treatment in 2012). This time, Dr. GS dropped a bombshell: It was possible that the new spot was not a tumour but necrotic (dead) tissue caused by radiation. He told us that necrotic tissue can grow and tends to appear 3-18 months after treatment. He explained that even my wonky balance could be explained away by scar tissue building on my cerebellum.

We were stunned.

And giddy.

I might have had a glass of wine with lunch.

A week after that, we met with Dr. S., the neurosurgeon I liked and trusted so much in 2012. It was hisadvice that we eventually followed for treatment and he performed my nine hour brain surgery. We always wait for hours to see him but it's worth it. This time, he'd shown my scans to several other doctors. He said that while my case was “perplexing” (not something you want to hear from a medical professional), they were fairly confident that the spot would turn out to be necrotic tissue or easily removed by surgery. He suggested that we wait a few more weeks and do another, more precise scan that would also measure activity (which might identify a growing tumour, versus inactive, dead tissue).

Four weeks later, I had the brain MRI. A week after that, I received the good news: my surgeon was prepared to say that the new spot on my brain was very likely necrotic tissue. No treatment is necessary at this point, unless I start to feel unwell. We'll just make sure to monitor for any changes. I heard the good news from all three doctors in separate appointments. Each, endearingly, was practically jubilant.

Oddly, I was not. I was definitely relieved but it all felt anti-climactic. We didn't even celebrate. I felt embarrassed to have to go back and tell everyone that I didn't in fact have a tumour (I know this is ridiculous. This news was extremely well received). Surprisingly (or perhaps not), I mostly felt tired and angry that we'd been put through this trauma.

I'm mostly over that now (but not entirely) and I've trying to immerse myself in the things in my life over which I have some control. Until today, I have not felt able to share this story in this space. I haven't felt much like writing at all. I've finally just decided to spew it all onto the page because it feels somehow dishonest not to have blogged about it.

It's done now.

Time to exhale and move on to the next thing.

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

books are my friends

I have struggled with insomnia occasionally in my adult years and much more frequently since my first cancer diagnosis. I don't know if it's my age, the years of chemotherapy and side effects, my old bed or things that go bump in the night but I very often wake up between 3:00 and 4:00 and can't get back to sleep, no matter how much I toss and turn.

I've learned not to look at my phone or turn on my computer. There is something about the back-lit screens that jolt me further awake, making it impossible to get back to sleep before dawn. And lying in bed, trying to will myself back to sleep just adds to my frustration.

I've started to keep a book-light on top of whatever novel I'm currently reading by the side of my bed. When I sense that sleep is temporarily hopeless, I read until I feel that it's worth it to take another crack at sleeping. Sometimes this is a couple of chapters. Sometimes it's a couple of hundred pages.

Reading is so soothing. It distracts me from worries of inadequate sleep and doesn't let me indulge the fear and anxiety that thrives in the middle of the night. And when I read at night, I feel none of the guilt that can accompany daytime reading that voice that says I really ought to be doing something more productive.

Last night, I read "Saints of the Shadow Bible" by Ian Rankin. I started it before bed last night. I'm now on page 150. I know it would be better to be sleeping more. I've cut out afternoon caffeine. We're trying to figure out how to afford a new bed, after 17 years.

I could write a book on what to do to cut down on insomnia. For now, though, I'll just appreciate the joy of reading one.

and then my hair got did (final makeover post, i promise)

Of the four women being made over, two of us picked our clothes and shoes in the morning and then had our hair done after lunch. I was grateful to be in the afternoon group and have someone else do the work for a couple of hours.





Actually, I did have to do a bit of work. It took concentration to separate those little papers.





You can't really see all of them, but there are THREE little bowls of colout being applied to my head.





This is my favourite part.











And this is why my hair will never again look the way it did when Tony was finished with it. How does anyone do the back of their own head like that?







Thanks so much to Tony from L'Elégance Salon (they don't have a web site or I'd provide a link), the St. Laurent Centre and the Ottawa Regional Cancer Foundation for making all of this possible.



(All photos by S. Sioufi except the last which was provided by T. Vincent)

and then it got easier

It's not that I don't have anything else to talk about. It's just that life has been really, really busy lately and when I finally get the time to blog, my brain is no longer working.

I thought I'd continue sharing my makeover photo-story with you. Please feel free to move right along if you're bored with this stuff. Let me know in the comments if you've read anything interesting lately.

Meanwhile, the shoe store was more fun than the changing room:

First I had to pretend to be shopping for shoes, so that A Channel could get some footage.

Check out the heels on these babies.


I threw on this dress so that I could be filmed without ruining the surprise. It hadn't even been among the outfits that I considered but I loved it so much that I thought about changing my mind. Or going back a few days later and buying it. But seriously - where would I wear a second fancy outfit? To the dog park? Buying groceries? To parent-teacher interviews?


Can you tell which shoes I came in with?


It just occurred to me that the ones I chose (#53) look a bit like my old Blundstones mated with the those sexy pumps I looked at when I was still wearing the diva dress. Little boots but with a ridiculous heel.

See that crazy grin on my face? I love shopping for shoes.


Here's a better view of the whole ensemble. The St. Laurent Centre even paid to have my top altered. The outfit is hanging in my closet. I may just decide that I will wear it to the dog park.

i don't understand

The Canadian Task Force on Preventative Health Care has released new guidelines for breast cancer screening. Among other things they have recommended that women under the age of 50 with an "average risk of breast cancer" not be referred for regular mammograms. Women over 50 would only get mammograms every 2-3 years (as opposed to every year). They also advise against regular breast exams and self-examination.

I don't understand.

On their web site, the Task Force gives no reasons for these guideline changes but I have heard several interviews on the radio and the main arguments seem to be that mammograms generate too many false positives, submitting many women to uneccessary biopsies and other intervention. 

There must be more to this. I have to be missing something. I have witnessed the trauma and fear that false postives inflict on the women and their families who live through it. However, I don't think it's as bad as the trauma of being diagnosed at Stage 4 because breast cancer was not caught at an earlier stage. And breast cancer in younger women, is often more aggressive.

Is there a part of this story that I'm missing? Task Force spokespeople insist that the new guidelines were not influenced by the desire to conserve resources. Really? Colour me skeptical.

The Canadian Breast Cancer Foundation released a statement yesterday in support of regular mammography and critical of the new Task Force guidelines:

“The fact is scientific evidence demonstrates that earlier detection and diagnosis can save lives among women 40-49 by at least 25%,” said Sandra Palmaro, CEO, Canadian Breast Cancer Foundation – Ontario Region.

Palmaro added that screening can help find cancers that are smaller and haven’t spread, which can allow for better treatment options and reduced disability and death from breast cancer. Breast cancer continues to be the most frequently diagnosed cancer among Canadian women.

 One of CBCF’s most significant concerns about the Task Force report is that it relied heavily on old data from “randomized controlled trials” (RCT’s) related to breast cancer screening and mammography, some of which are 25 – 40 years old and were based on equipment that is now outdated. There has been an enormous change in breast imaging since that time, including significant improvements to analog technology, and the continued adoption of digital mammography across Canada. Digital mammography has been shown to increase accuracy in younger women pre and perimenopausal women, and women with dense breasts, the group the Task Force recommends be excluded.

This sounds pretty convincing to me. Your thoughts?

chronological order

Arrived at the St. Laurent Centre with my friend SS, met the other women and realized that I was going to have an exciting day.


I was impressed with Tony from L'Elegance. He was consultative but had a pretty clear idea of what he wanted to do.


Trying on clothes was hard work. I don't have photos of some of the real duds or I would share (really I would). Finding items that fit and looked good was a real challenge and there were moments when I felt extremely frustrated. There were lots of great helpers, though.


I was determined to be open-minded but this was just too much sparkly for me. I felt like I was wearing a very shiny washboard.

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).

******

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.

******

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.

. 

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.

makeover day

We arrived at the studio very early.

The anticipation was far worse than the experience of being on camera, which went pretty smoothly. And I didn't fall down!

The Fab Four with Tony from L'Elégance Hair (Tony gave us hours of his time - all day Monday and early Wednesday morning - taking great care with our colour and cuts. This lovely man is an artist. You should all go to St. Laurent Centre and get him to do your hair).

My favourite interviewer.

Blogging on the fly today (more pics and words about all of this soon) but I didn't want to let another day go by without acknowledging those who made this possible.

My friends AB for nominating me, SS for coming on Monday and MR for getting up early and joining my family at the studio.

My man and my boys (all photos courtesy of SKW) for the nomination, for getting up early to come to the studio and cheering every step of the way (and for saying that I was beautiful BEFORE I had the makeover).

The staff at Laura, Town Shoes, and L'Elégance Hair Salon.

Tasha and Renée from the St. Laurent Centre for the styling and the support.

To the lovely and talented woman who did all of our makeup on Wednesday morning (her name is escaping me. If you know it, please let me know so I can credit her).

And most of all, to Bernice from the St. Laurent Centre and Beth from the Ottawa Regional Cancer Foundation. These women are dynamos who combine talent and determination with an enormous amount of compassion and kindness.

And finally, I need to mention Paula, JL and Tanya - the women with whom I went through this experience. The love, support and joy that each felt for each other and for me is impossible to express in words. Thanks so much for being so beautiful. I really do love each one of you.

It must be mentioned that this was all in aid of the Courage Campaign of the Ottawa Regional Cancer Foundation. The Foundation is building a Wellspring Centre that will provide "emotional, psychological and educational support, free of charge, to individuals and families living with cancer." As a an ongoing cancer patient, I can tell you that this the kind of thing that Ottawa needs desperately, to go along with the cutting edge medical care from which we all benefit.

It's not too late to make a donation! (The St. Laurent Centre, in addition to funding the makeovers, donated an additional $10,000 to the campaign. I know where I'm doing my Xmas shopping this year).

it is what it is (and what it is is ok)

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer.