Thursday, July 31, 2008

every year is a gift

In a few days, I will turn 41.

I will be offline, hanging out at one of my favourite places in the world. I am not sure how peaceful it will be (we will be there with four adults, two kids, two puppies and a grown up dog) but I know it will be happy.

Last year my birthday was a very big deal. My friends and co-workers pooled their resources and sent me to BlogHer in Chicago. And there was a whole month of celebration leading up to the day itself. I was celebrating being alive, turning forty and my first clean scan after the metastasis.

This year I am happy to have things be much lower key. I am feeling pretty lucky these days.

In January, I acknowledged to myself that there were two things I really wanted this year, to attend BlogHer in San Francisco and a puppy. Thanks (again) to generosity from others (and the fact that I spoke at BlogHer this year), both of those things have been realized for me.

That’s a lot. And it’s enough.

Especially when I realize that every birthday marks another year that I have been alive in this beautiful world. Another year surrounded by people I love and in which I have the chance to learn and grow and become stronger.

I have been feeling a little off balance lately, tired and frustrated and somewhat overwhelmed. It’s good to have a birthday to remind me again how lucky I am. And with four clean scans now under my belt, I hope to have lots more chances to celebrate my birthday.

Now that’s not to say that I don’t want a little cake with a few candles and some home made cards from my kids (and I did treat myself to a facial before I left for SF). Even a low-key birthday needs to be celebrated.

I'll be back online on August 11th.

Cross-posted to Mothers With Cancer.

Tuesday, July 29, 2008

a very good man

On my first full day in San Francisco, I spent the early part of the day playing tourist. A highlight was a visit to City Lights Book Store. When I am away on my own, my kids and my spouse are never very far from my mind and this wonderful and historic book store seemed like as good a place as any to buy them some presents.

And so I did. I bought an armload of stories that I had never seen anywhere else and put them all in canvas bag with the store's name on it. I left the store feeling very pleased with myself.

I schlepped those books from North Beach to Union Square, for the orientation session for BlogHer speakers. But before going out for dinner and on to the various BlogHer welcome receptions, I stowed all my stuff in Babz's room in the hotel, so that I wouldn't have to carry them or risk losing them. Again, I felt very pleased with myself.

I had a lovely evening. I don't handle crowds of new people very well but there is something to be said for hitching yourself to an extrovert and just enjoying the experiences. And so I basked in Babz's glow and met some wonderful people at the Speakers' reception. I even won the door prize, a Nintendo DS.

As that party wound down, we headed up to the Newbie party for BlogHer first-timers. I demurred, as I was not a newbie but someone convinced me that I could play a role in welcoming the newbies. It sounded good to me, and besides it was in a rooftop bar with a beautiful view.
I had expected to make the evening a short one, as I was jet-lagged and feeling the three hour time difference. I also had to commute out to friends' place where I was staying in Oakland. But it wasn't until we arrived at our third party of the evening (in yet another part of the hotel) that I realized that I had hit a wall (and that the room was just too packed for me). I left that party as quickly as I had entered it and headed back up to Babz's room to get my stuff.

Babz walked me down to the taxi stand (it was too late for me to feel safe walking home from the BART in Oakland) and saw me get off safely.

It was at that point that I realized that I was more than a little drunk. As I had been busy socializing all evening, the bar had been open and my glass was always full. And somehow it hadn't occurred to me to get someone to fill my glass with water.

I managed to slur out the address in Oakland to my cab driver, a young man who was really very nice. When I couldn't tell him how to get to my destination, he first called a friend and then used his Blackberry to call up a map. He had to use it again when I couldn't tell him where to exit off the freeway (something I could not have done even if I were sober. I am a terrible navigator).

While he drove, we chatted a little bit. I told him about the conference. He told me that he didn't usually like to drive to Oakland but that he was doing it for me because I "seem like a nice person."

"I am a nice person," I enthusiastically replied.

We were both relieved and happy when he dropped me off in front of my friends' building and we wished each other well.

In the middle of the night (skipping over the part where I locked myself out and had to wake my hosts who I had only met the day before so that they could let me in), I woke with a start and registered the fact that I no longer had the City Lights bag.

I tip-toed down the hall and back out to the street to see if I had left the bag on the front stoop (where I had sat while I had been trying to sober up), to no avail. Nor did Babz find the bag in her room. My receipt didn't have the name of the taxi company (and I couldn't remember). I checked twice with hotel security (in case it had been found and dropped off there) and with the lost and found table for BlogHer. By Saturday, I had given up and was trying to decide if I should return to City Lights and attempt to replace the presents I'd bought.

Then, on Saturday, as I was being miked for the session at which I was speaking, I heard my name being called.
"I was your taxi driver," he said. And on his arm was a bag full of books.

"How did you find me?"

He made typing motions with his fingers. "Your name was on your credit card slip."

I was euphoric.

I asked him if I could hug him.

I offered him money (he refused).

Babz took his picture (which I won't post here because it doesn't do him justice).

And everyone made a big fuss.

"I was in the neighbourhood," he said, modestly.

But I know that he went to great lengths to track me down. He googled my name to find my blog. My last post had said that I was going to the BlogHer conference. I had linked to the BlogHer agenda, so he must have read it to find my name and the title of my session (I had told him that I was speaking). He then came to the hotel, checked the directory and followed the labyrinthine corridors to find me.

I am so touched by what he did. I wish that there had been something I could have done (I could have insisted on giving him money but I felt like it would embarrass him). His name is Eduardo and he is a lovely man.

The next time I have the chance to something nice for a stranger, I will think of Eduardo. I encourage all of you to do the same. If you do, please let me know in the comments (or if something like this has ever happened to you, please share that as well).

And yes, I really did behave myself for the rest of the conference.

Monday, July 28, 2008

more than my cancer

I really do have an amazing story to share with all of you and I meant to post it before now. Parenting, however, has proven an impediment. I will tell you my terrific story (how is that for a build up?) tomorrow but for today, here are some thoughts on the BlogHer conference:

When I meet someone new, I don’t usually introduce myself by saying, “I’m Laurie and I have cancer.”

In fact, there are many people I know only casually who have no idea that I have ever been through cancer treatment, let alone that I live with metastasis. People tell me all the time how healthy I look and I take pride (somewhat irrationally, I admit) in the fact that I don’t look like a typical “cancer patient.”

Entire days often go by when the word “cancer” does not cross my lips (I would like to say that there are days when it does not cross my mind but that would be a lie). I write about living with cancer but cancer is not my life. And I like it that way.

This year, for the second time, I attended BlogHer, a conference for women bloggers (last year it was in Chicago and this year in San Francisco). The conference sold out this year and there were more than 1,000 women in attendance. For someone who spends a lot of time by myself by choice, this is both an exciting and scary concept.

Meeting that many new people at the same time is always overwhelming. However, this is compounded for me because, at BlogHer, when I introduce myself, I have to lead with the fact that I have cancer.

“I’m Laurie and I blog at Not Just About Cancer. And Mothers With Cancer. And MyBreastCancerNetwork.Com.”

You get the idea.

You can read the rest of this post at MyBreastCancerNetwork.Com.

Friday, July 25, 2008

amazing encounters (part 1)

I met Grover! Sesame Street had a suite at the hotel that was hosting the BlogHer conference. They were promoting their new web site, which my son loves. The real Grover and the real Abby (she came after my Sesame Street time but she's really nice) were present and anyone who signed up could take home a DVD of herself on Sesame Street!

The atmosphere in the room was absolutely giddy. And I lost count of the number of moms who laughed as they insisted, "I'm telling them that I'm doing this for my kids."

Which is exactly why I did it. I swear.

I have to say that I am struck by this photo. Can you tell how happy I was right at that moment? Seriously, meeting Grover turned me into a giggling groupie.

I need to tell you all about two other amazing folks I met when I was in San Francisco. And neither had anything to do with blogging or the conference.

I arrived in SF on Wednesday evening. I didn't have my first meeting (an orientation for BlogHer speakers) until 3pm on Thursday, so I spent the earlier part of that day playing tourist.

On my walk back from North Beach to the hotel, my eye was caught by a store with some funky looking clothes and purses in the window. I am really not much of a shopper but there was something about this place that just spoke to me. Inside, I met Megan the designer, who was working away at her table as I browsed.

I tried on a gorgeous jacket (which looked great on me. The online photo doesn't do it justice. And the in store price was cheaper, too) and decided to justify it as a birthday present to myself (August 4th is not that far away...).

Martha and I chatted away as I browsed. Now, I have no idea how this came up but at some point she mentioned menopause. I told her that I had gone through menopause at 38, due to chemotherapy (not the kind of thing I generally tell a complete stranger).

Then Martha told me that she has had Stage 4 thyroid cancer that she has been living and working with for many years (I not absolutely certain about the thyroid or the number of years. I was just so stunned by this revelation).

I told her that I am Stage 4, too.

We hugged. And we looked at each other, a little in awe.

You wouldn't guess that either of us had cancer. We both look pretty damn healthy. Better than healthy.

I floated out of the store, so buoyed was I from this encounter.

And I will always think of Martha, hope and inspiration when I wear my beautiful jacket.

I'll tell you about another amazing encounter tomorrow.

Thursday, July 24, 2008

safe, sound, happy and tired

I had a wonderful time at BlogHer '08.

I had chemo the day after my return, though and am still recovering. Some longer posts are owed to you all very soon.

Meanwhile, here is a pic of me, BlogHer co-founder Lisa Stone and wonderful Babz (Babz and I, who had never met in person, took to each other like two old friends).

I had to snag this photo from Babz, since I took exactly one photo all week end. It's of me and an international celebrity and I will post that tomorrow.

Tuesday, July 15, 2008

i'm off!

I am off to attend (and speak at!) BlogHer in San Francisco. And since my laptop is still at the computer hospital, I will be offline for the next few days.

I am in for a late night, because no matter how much I have been scrambling. I will be glad to be done and on the road.

As for BlogHer, I am, in equal parts, excited and completely panicked.

If you are going too, and see someone whose blog has "cancer" in the title, please don't assume that she doesn't want to have fun, OK?

I will be home late on Monday night and have chemo the next morning, so not to worry if you don't hear from me again until July 23rd.

Meanwhile, I have two new posts that I haven't told you about up at MyBreastCancerNetwork.Com.
Living With Metastasis: Younger Adults Living With Cancer and a piece that was very hard to write but deserved to be written, Punk Rock Mommy: A Tribute.

I'll be back at the keyboard in a week!

Sunday, July 13, 2008

breast envy

Originally posted at Mothers With Cancer.

I find myself continuously inspired by the group of bloggers in our little community. Today's post was provoked into being by Lahdeedah's post "The Road to OK" and imstell (Stella)'s response, "Acceptance."

I have always felt ambivalent about my breasts. As a young woman (I was an early bloomer, it must be said) they brought me attention that was at times unwelcome and at times confusingly gratifying. They fed two children for a total of more than three years. Once large and round, they were irrevocably changed by motherhood, as my nipples moved southward and seemed to stretch ever more closely towards my toes.

And then my right breast betrayed me, playing host to the tumour that would eventually spread to my lymph nodes and then to my liver. On February 2nd ("Groundhog Day!" I exclaimed when my surgeon told me the date. I had to explain that I was not objecting on the basis of this being a special holiday for me), I had a mastectomy.

I feel no less ambivalent now that I have only one breast. I was consumed with terror before the surgery and relieved afterwards to see only one bandage across my chest. I was frustrated by drains and then by the fact that healing seemed to take a step back two weeks after the surgery (no one had warned me this would happen).

More than two years later, I am still plagued with post surgical issues, including a limited range of motion and lymphedema in my chest, back and rib cage (when I showed this to my surgeon, couple of weeks after surgery, he shrugged it off as "just back fat," so loathe was he to admit that he didn't know. He actually said that the fact that my breast was no longer pulling it forward the fat was sticking out more. My physiotherapist just about had an aneurysm when I told her that story).

Radiation left me with serious scarring that exacerbated the lymphedema and made it painful to wear a prosthesis. Most days I am perfectly fine with this. At other times, I feel extremely self-conscious. Some days I dress to camouflage and some days I am quite content with the altered landscape of my body.

It is in the summer time when I most miss having two breasts, when I sometimes long to look "normal" in a tank top. It is also when I find myself (as Lahdeedah confesses in her post), ogling other women with envy.

However, I remind myself that how I look is perfectly normal to those who know and love me. My older son has even said as much, as has my spouse. And along with the lines around my eyes and mouth (I smile a lot), the stretch marks on my belly (I have borne and birthed two beautiful boys) and even the little scar that runs from the corner of my left eye (I hit a metal bar when I was chasing a cute boy in my class during a game of tag in Grade 6), the scar on my chest and my asymmetrical shape tell the story of the experiences that have shaped who I am.

The following poem was originally posted last summer:


Women's breasts emerge in the heat of the summer.
Big ones and small ones.
Perky ones (I could fit them in my hand).
Breasts nursing babies.
Freckled cleavage.
Wrinkled cleavage.
And breasts that can't possibly be real.
I stare at women's breasts now with great fascination.
And not a little envy.
I have never seen a woman with one breast.
Except in the mirror.

Friday, July 11, 2008

on perspective

I have a new post up at MyBreastCancerNetwork.Com:

A shift in my priorities occurred when I found out that my cancer had metastasized. And those priorities have not really shifted back now that my prognosis is more hopeful.

It's not so much a matter of living every day as if it could be my last (I don't actually think that would feel healthy or peaceful). It's more that I try and savour each new day like an ice cream sundae, appreciating each new flavour, right down to the last little bits in the bottom of the glass (I always did have a sweet tooth).

Lately, I have been forgetting to live this way. It's time to slow down again, enjoy my life and take pleasure in the things that give me joy.

You can read the rest of this post here.

Thursday, July 10, 2008

getting unblocked

To beat writer's block, you need to write.

I learned this from Julia Cameron and then Anne Lamott drove it home.

Write three pages, longhand. This is what Julia Cameron advises in The Artist's Way and I what I did for the 12 weeks that I followed her program.

Then I switched to doing my "morning pages," as she calls them, on the computer. Then I stopped altogether.

Then I became blocked.

On the computer it turns out, I was editing myself, which is fine when I am drafting an essay but not when I am trying to unlock my creative muse. The editing also took longer and made it feel more like a chore.

I am now getting started most days by hand writing those three pages. Often, by the time I'm done, I have a pretty good idea of what I am going to write that day.

I wish I didn't have to keep being reminded to do the things that are good for me.

I would save myself a lot of grief.

Wednesday, July 09, 2008

me: from a to z

Feeling lazy today, so I am lifting a meme from Average Jane. I did this in complete stream of consciousness. I would probably write it completely differently tomorrow.

Update: I did the meme wrong! It turns out that I was supposed use all the same alphabet words as everyone else and just comment on them. I'm not changing it now and this was more fun anyway.

A is for activism. Mine mostly manifests itself through my writing these days.

B is for banana. Love them.

C is for cookie. And that's good enough for me! (Whether you get this reference will tell me your demographic).

D is for dogs. Of course. What else?

E is for elephant. Still thinking about the one that went on a rampage and was eventually killed. So sad.

F is for future. Nice to feel like I have one.

G is for good. This is how I feel about my life today.

H is for hope. See F and G.

I is for ignominious. Just because I like that word.

J is for jazz. I feel guilty that I didn't create space for my spouse to go to more of the Jazz Festival.

K is for kangaroo. I need to read up. D. was asking me questions I couldn't answer last night. "When do their eyes open?" "How old are they when they can live outside their mother's pouch?"

L is for love. What I feel when I look in on my sleeping kids.

M is for money. It would be handy to have more of it.

N is for naughty. My puppy has taught me the meaning of the word.

O is for open. A good thing to be, most of the time.

P is for pizza. My downfall.

Q is for quiet. I love it.

R is for resting. What my doggies are doing right now.

S is for safety. A word I am still defining, figuring how much I need and when to step outside its bounds.

T is for travel. I am excited to be going to BlogHer and still need to pick up an SF travel book.

U is for umbrella. We have had too much umbrella weather this spring.

V is for values. Don't tell me I don't have any just because mine are different from yours.

W is for writing. The activity I procrastinate before doing. The activity that I miss most (along with exercise) when I skip. The activity that has become a habit and that has greatly enhanced my life.

X is for xenophobia. Because it's bad. And it's more interesting word than xylophone or x-ray.

Y is for yak. Because Dr. Seuss loves them.

Z is for za. A very handy Scrabble word. It is the 17th letter of the Arabic alphabet and also a short for for 'pizza.' Not sure which is the accepted definition, just that Scrabble likes it and I can play it. So there.

Tuesday, July 08, 2008

how to decide if a drug is "worth" the cost?

I have a new post up at MyBreastCancerNetwork.Com.

Living With Metastasis: Avastin - How Do We Decide If A Drug Is Worth the Cost?

Here is an excerpt (the paragraph in italics is a quote from an article in the New York Times, to which this is a response):

...If a drug like Avastin can prolong life by, let’s say four months, is it worth the cost? I know what my kids would say. Also, what exactly does it mean when it is said that patients in a clinical trial ‘lived four months longer’? I always return to Stephen J. Gould and “The Median is not the Message” when I need to be reminded that statistics do not always provide the clearest picture.

Gailanne Reeh remembers what life was like within a few months of those initial scans, when her cancer began causing terrible symptoms.

Her abdomen grew so full of fluid that it was hard to bend to tie her shoes. Bowel movements were difficult, and even lying down was uncomfortable with that huge mass in her abdomen….After six months of treatment the fluid in her abdomen was down to just a trace, her tumors were stable or smaller and she felt like her former self again."

Quality of life is incredibly difficult to quantify. However, I am struck by how the symptoms described above are so similar to my own when the metastasis was diagnosed. The pain was excruciating. And to have those symptoms be alleviated eased not only the pain but the terror I had been feeling as well.

In my own case, as with Ms. Reeh’s, we cannot be sure how much of the improvement was due to the breakthrough drug, the chemotherapy that accompanied it or the combination of the two (although my oncologist believes it to be the latter). The relatively new and expensive drug in my case is Herceptin.

You can read the rest of this post at MyBreastCancerNetwork.Com.

Monday, July 07, 2008

on being brave

My family and I went to a little party for brunch on Sunday. This would not have been a big deal except that it was going to mostly former co-workers in attendance and since the cancer returned I have been avoiding these kinds of events.

But this brunch was different. It was a surprise in honour of a friend and former co-worker who is in ongoing breast cancer treament (she is also one of the women with whom I am involved in a writing project and that I wrote about in my post entitled "the building." There is a new building now but my friend still works for the organization). She has been treated quite shamefully by her employer (a supposed advocate for "workplace accomodation") who has consistently refused to accomodate her need for regular time off for treatment. The case will be decided over the next two days by an arbitrator and I knew I needed to overcome my trepidations to show her my support.

And I had a great time. There were so many people there who I was happy to see (I think it is a testament to my friend C. She is a wonderful person who attracts wonderful friends, all of whom wanted a chance to show her how much we love her). The food was great. I loved being there with my boys (all three of them). I always enjoy showing them off and they made me very, very proud just by being themselves.

I am so glad I went, despite my fears. I always tell myself that I avoid these things because it will be awkward and sad. But I don't think that I have been giving people enough credit. The truth is my tendency to experience social anxiety (which predates the cancer) has been exacerbated by spending so much time on my own (something I quite enjoy). I think I use the cancer as an excuse.

From the moment I stepped in the door, and saw all these people I genuinely like, I felt happy and excited and I know that my face and body language expressed that. It was lovely to catch up with people and easy to put them at ease. I know that going did me a world of good.

This post was inspired by "Do It Afraid" by Lahdeedah, one of my co-bloggers over at Mothers with Cancer.

One another note, I urge you to go read a post by Andrea Collins-Smith, who faced the ultimate fear with tremendous grace and courage. Andrea (who wrote as Punk Rock Mommy on her own blog and at Mothers With Cancer) passed away on July 5th, after succumbing to inflammatory breast cancer. She leaves behind six children and a loving spouse. I only became aware of her blog shortly before she made the decision to stop treatment and go into palliative care. She moved and awed me with every post. This last one was written a short while ago, to be posted after her death. It is terribly sad but also hopeful. I hope to one day face death as bravely.

Brace yourself.

Friday, July 04, 2008

rising above it

A few years ago, back in what seems another lifetime, I had a co-worker who was driving me crazy. He was incredibly insecure and often sought to make himself look good at others' expense. He was also lazy and very willing to let others slog away at the grunt work, grabbing the tasks for himself that would gain recognition from the leadership of our organization.

I started to obsess about the unfairness of this. I wanted something to be done. And I began to vent my spleen to anyone who would listen. Even when relaxing after an intense project, I found myself returning to this subject like a dog worrying a bone.

One friend in particular would listen sympathetically but he also seemed kind of amused. And he would, after listening patiently, gently try and get me to move on. He was very supportive and encouraging but he hinted that perhaps I should stop putting so much energy into being angry.

I remember thinking at the time that this guy just didn't understand the seriousness of the situation.

I have a different perspective now.

This particular friend is a cancer survivor and perhaps that's what led him to understand what I now see more clearly. It is much healthier (and better in the long run) to focus on what really matters and to save our anger for situations when we can actually hope to create real change.

I have recently become somewhat reluctantly involved (and only peripherally) in a situation where it seems that a group of people, for whom I have great respect, have lost sight of a common goal. They have become bogged down in a morass of pettiness and are choosing to express some legitimate frustrations in ways that are destructive. And some individuals are being badly hurt in the process.

I can't help thinking that life is way too short for this.

I think, in situations like this it is crucial that keep ourselves focused on what's important. I always try and ask myself what my goals are and whether my actions will move me towards it. And if I am acting out of anger or frustration then I am likely only contributing to the problem, not to solving it.

Anger and confrontation certainly have their place but they are not ends in and of themselves. We need to ask, yet again, what organization we want to build, be honest about the things that aren't working and take concrete measures to fix those things.

And we need to treat one another with a little more compassion.