May 2010 bring us all peace, joy and inspiration.

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.

"CT scan radiation may cause cancers"

but on the other hand

"Study: Coffee and tea may lower diabetes risk"

My children are still very beautiful.

(photos: Mary Anne Folckomer Register)

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.

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.

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.

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."

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.

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/

Geneviève Bergeron

Hélène Colgan

Nathalie Croteau

Barbara Daigneault

Anne-Marie Edward

Maud Haviernick

Maryse Laganière

Maryse Leclair

Anne-Marie Lemay

Sonia Pelletier

Michèle Richard

Annie St-Arneault

Annie Turcotte

Barbara Klucznik-Widajewicz

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.

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.

Thank you xkcd.

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.

photo: Mary Anne Register Folckomer