food meme

Recovering from chemo always provides me with an excuse to spend time online getting caught up on the blogs that I love. I am stealing this meme from Average Jane, who also posted the following instructions:

1) Copy this list into your blog or journal, including these instructions.
2) Bold all the items you’ve eaten.
3) Cross out any items that you would never consider eating.
4) Optional extra: Post a comment at www.verygoodtaste.co.uk linking to your results.

It took me a while to do (I cut myself some slack when I am in my jammies for days on end) but it was fun.

And I have the following observations:

1- I don't know as much about food as I thought I did. I had to look a lot of these things up.

2-I am not as adventurous as I was in my younger days. Not sure that I would eat frogs' legs now. Or that I would have turned down head cheese, had I been offered it when I was younger.

The VGT Omnivore’s Hundred:

1. Venison

2. Nettle tea

3. Huevos rancheros

4. Steak tartare

5. Crocodile

6. Black pudding

7. Cheese fondue

8. Carp

9. Borscht

10. Baba ghanoush

11. Calamari

12. Pho

13. PB&J sandwich

14. Aloo gobi

15. Hot dog from a street cart

16. Epoisses

17. Black truffle

18. Fruit wine made from something other than grapes

19. Steamed pork buns

20. Pistachio ice cream

21. Heirloom tomatoes

22. Fresh wild berries

23. Foie gras

24. Rice and beans

25. Brawn, or head cheese

26. Raw Scotch Bonnet pepper

27. Dulce de leche

28. Oysters

29. Baklava

30. Bagna cauda

31. Wasabi peas

32. Clam chowder in a sourdough bowl

33. Salted lassi

34. Sauerkraut

35. Root beer float

36. Cognac with a fat cigar

37. Clotted cream tea

38. Vodka jelly/Jell-O

39. Gumbo

40. Oxtail

41. Curried goat

42. Whole insects

43. Phaal

44. Goat’s milk

45. Malt whisky from a bottle worth £60/$120 or more

46. Fugu

47. Chicken tikka masala

48. Eel

49. Krispy Kreme original glazed doughnut

50. Sea urchin

51. Prickly pear

52. Umeboshi

53. Abalone

54. Paneer

55. McDonald’s Big Mac Meal

56. Spaetzle

57. Dirty gin martini

58. Beer above 8% ABV

59. Poutine

60. Carob chips

61. S’mores

62. Sweetbreads

63. Kaolin

64. Currywurst

65. Durian

66. Frogs’ legs

67. Beignets, churros, elephant ears or funnel cake

68. Haggis

69. Fried plantain

70. Chitterlings, or andouillette

71. Gazpacho

72. Caviar and blini

73. Louche absinthe

74. Gjetost, or brunost

75. Roadkill

76. Baijiu

77. Hostess Fruit Pie

78. Snail

79. Lapsang souchong

80. Bellini

81. Tom yum

82. Eggs Benedict

83. Pocky

84. Tasting menu at a three-Michelin-star restaurant.

85. Kobe beef

86. Hare

87. Goulash

88. Flowers

89. Horse

90. Criollo chocolate

91. Spam

92. Soft shell crab

93. Rose harissa

94. Catfish

95. Mole poblano

96. Bagel and lox

97. Lobster Thermidor

98. Polenta

99. Jamaican Blue Mountain coffee

100. Snake

vindication

One of my least favourite of household chores is the making of school and day camp lunches. It is an entirely thankless task, one in which I often see the results of my efforts returned at the end of the day.

And, ten year old S., in particular, has told me on more than one occasion that the lunches I make are not nearly as good as those of his peers. I am not sure if this is because white bread, sugary drinks and most highly processed treats are off the menu, if his perception is distorted or if my lack of enthusiasm for the task is reflected in the end product.

At any rate, I have not had to pack him a lunch in a while and I haven't missed it.

However, S. has spent the last couple of weeks staying with his Grandma and attending a day camp at the Royal Ontario Museum (an animation camp. They are making movies!). On the first day, Grandma asked S. what she should make him for lunch.

"Mama always makes me a ham and cheese sandwich with butter and a little bit of hot sauce."

Perhaps my efforts have not gone entirely unappreciated after all.

i'm too busy to have cancer

I have far too much on my plate right now to go to chemo.

But I must.

See you on the other side.

Meanwhile, I have a post up at MyBreastCancerNetwork.Com.

another incredbible piece of writing

Jenny, who writes at "At Least It's A Good Cancer," wrote this piece, on the change in identity that comes with being a cancer patient:

At first, I wanted so much to maintain my professional identity, to be the smart, strong person who just happens to be going through cancer treatment. I didn't want to be like those grey, wispy, shadowed people sitting in the waiting room in their headscarfs and their wheelchairs. When I had surgery and couldn't wash my own hair, it was hard to accept help because it just drove home my incapability. When I couldn't walk outside for a full half hour at a time, I felt the loss of my physicality more than I had ever felt its presence.

What the writer doesn't say, and what happened too slowly for me to watch, is that you really can go back to something like your old life, and leave that self-loss behind; but it's almost like a projection of your old life, one rendered in all the same colors and moving in the same patterns, but against a different screen, parallel to the old but never quite touching.

I cannot say how much this spoke to me, even though Jenny has completed treatment and mine is ongoing. I have been thinking a lot lately about how strongly I feel about wanting to be seen as strong, vibrant and above all well, that I have even become defensive when anyone implies otherwise.

You can read the rest of Jenny's post here.

more random

I am feeling a little scattered today so here are so more random thoughts:

1. I have been in such a good mood since my manuscript came back from my editor. I think I am just basically relieved that she didn't say, "This is a piece of sh*t and I have no idea why we said we would publish it." Sometimes it pays to set your expectations really low.

2. I am finding time management or the organization of my day to be a real challenge. No matter what thing I do well on any given day, there are several that I should have done and didn't.

3. I am very sad that Jeremy Hinzman is being deported.

4. I took a deep breath and gave some thought to an email before I wrote it today. In doing so, I realized that the other person had raised some valid points. I think cancer has made me grow up a little.

5. I am very psyched for the Ottawa Folk Festival. It had better not rain (as it has almost every day this summer). We had such a good time last year.

my 'best of the blogosphere'

Today's blog is brought to you by other people. Only they don't know it yet.

I am behind in my blog reading and even further behind in life but here are some of the best posts I have read this week, the ones that I keep thinking about:

I Don't Want to Be Dooce by Sassymonkey.

Ambulance Chasing by Mary P. Jones (MPJ)

And look what my friend Jacqueline, of Rebel 1in8 has been up to:

the view from here

The internet can be such an interesting place, no?

completely random

1. When it comes to John Edwards and his affair, I am just about completely indifferent. Elizabeth, however, remains my hero.

2. I realize that I never did blog about meeting her at BlogHer last year. I'll have to do that.

3. I looked up the live-blog of my session at this year's BlogHer and found this. It feels a bit to me like she wasn't at the same session as I was. I remember lots of laughter and a mostly hopeful message. Am I being over-sensitive? Also, I thought live-blogging was meant to be straight-up recording not editorial comment. Feel free to set me straight on this.

4. I have been running with my ten year old son and my big dog. We are now at the place in our program when we run 8 minutes and walk 1 minute (twice) and then run for two minutes (for a total of 18 minutes of running). When I was diagnosed with mets, I threw out my running shoes, so sure was I that I would never do this again. I am so proud of myself and so happy to be running with my son.

5. Yesterday, in my son's absence, I decided to initiate the puppy to running. I had the big dog tied around my waist and held the leash for the little one in my hands. I looked like the crazy dog lady. I know that we have to be careful not to push puppies too hard but I am a VERY slow runner and I kept checking to see if she was flagging. After the run, I took her to the dog park and she tore around some more. I don't think that I pushed her too hard.

6. Today, a big dog walked up to me in the dog park and peed all over my legs and my nice red sandals. The owner was barely apologetic. I would have been mortified.

7. My spouse and I are giving his cousin some wine as a wedding present. We have been using this as an excuse to do our own wine tasting. We currently have three open bottles, going to vinegar.

8. When I won the DS at BlogHer, I thought I would just give it to my kids. Who knew there were such fun games for adults? The game came with a crossword game (I am hooked on the anagrams) and I got two more brain enhancing games for my birthday. It turns out that I am not very smart. And I am having to ration my game time.

9. I wanted Katee to win So You Think You Can Dance. Joshua was my second choice, though, so I'm OK with that. I started watching by accident when they were at the Top Ten. I was quickly hooked. I hadn't actually watched any TV in months.

10. My book just came from my editor. It's time for my last crack at revisions. She was happy with it, thank goodness. I have been glad for the break from it and feel ready to get back at it.

11. What I really feel like doing is walking the dogs, knitting, eating and reading. Oh and hanging out with my family, too.

12. Thanks for all the birthday wishes. It really was wonderful. I slept in, ate lots of goodies and spent time with some people I really love. Great day.

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.

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.

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.

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.

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.

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!

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:

voyeur

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.

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.

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.

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.

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.

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.

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.

better

I have a new post up at MyBreastCancerNetwork.Com.

I wrote about pulling myself out of the emotional funk, with the help and support of so many of you.

looking out at the world

My computer and my body are both still pretty sick.

I have been thinking though about my tendency to become a hermit when I get to feeling low, missing work and my old life (or give in to the fear, as cancer is still very real presence and I know that I have not escaped it).

Chemo weeks tend to be the worst but I will admit that I have been struggling a bit of late.

I have this friend who refuses to stop calling me, though, even when I don't call back. A friend who calls and leaves me messages that say, "Just checking in!"

A friend who refuses to let me turn completely inward.

I am very grateful.

paradox

I am afflicted with my usual pre-chemo malaise.

And something else. I made it a goal this year to write as much as I could about cancer and living with mets and yet, today I am sick of being a cancer patient, sick of cancer and everything about it.

Achieving balance has always been a challenge for me.

My computer is sick today. The fan has died and it will only work for a few minutes at a time. Tomorrow it will go unto the shop (how realistic is it to think that I will get it back on the same day?).

Hopefully, by Wednesday, my computer and I will both be up to writing again.

cancer is a chronic illness

My father-in-law, himself a cancer survivor, sent me a terrific article from the New York Times:

"Cancer as a Disease, Not a Death Sentence"

That about sums it up, for me.

I particularly enjoyed the following anecdote, so reflective of my own experience (the drugs are different, except for the Herceptin):

''Dr. Esteva described a breast cancer patient first treated with a mastectomy and the antiestrogen tamoxifen in 1995. Five years later, cancer had spread to her lungs, prompting treatment with a newer anticancer drug, an aromatase inhibitor. When that no longer worked, her cancer was found to possess a molecular factor, HER-2, and she began treatment with Herceptin, a designer drug tailor made to attack HER-2-positive breast cancer.

Herceptin therapy was able to stabilize her metastases for years, “something we had not seen before,” Dr. Esteva said.

The patient now receives a combination of Herceptin and another drug and enjoys a relatively normal quality of life, the doctor reported.''

The article describes beautifully the approach of my oncologist. First treatment A is tried until that stops working, then treatment B and so on. Ideally, treatment would continue in this way until a cure is found . For the time, being, though many of us are living longer than anyone thought we would and with a pretty good quality of life.

Cross-posted to Mothers with Cancer.

book review: the deceived*

Holey moley! I was in the mood for a page turner and with Brett Battles’ The Deceived, I got that in spades. This book sucked me in and swept me along in the way only a good, action-filled suspense novel really can.

The book’s central character is a mercenary with the alias Jonathan Quinn. Quinn is a ‘cleaner’, hired by government and crime bosses alike to go in and eliminate evidence (and remove bodies) after the violence is over.

In this, the second novel in a series, Quinn is hired to clean out a shipping container, only to find that it contains the body of a man who once saved his life. The man, a former CIA agent, was badly beaten and left to slowly die in the shipping container. He did, however, manage to scrawl a message (in blood, of course), consisting of a series of letters and numbers, on the container wall. And he died clutching a photo of his girlfriend - one that had been taken by Quinn himself when all three had been on a fishing vacation.

Quinn sets out to find out what happened to his friend and soon learns that the man’s girlfriend, Jenny, has disappeared. The reader travels with Quinn to several American cities and, eventually, to Singapore, as he begins to put the pieces of the puzzle together and very quickly puts himself in the line of fire.

The book is well-written (a real necessity for me to enjoy any book. Even with a great plot, badly written prose is like nails on a chalk board), with great dialogue between likeable characters, who manage to be believable despite their existence among the world of “secrets.” And the action scenes are great fun (they certainly got my heart racing).

The book did start to drag near the end (the part that takes place in Singapore), as it took a little too long to build to the climax. And there was one plot twist that I saw coming a mile away. However, there was a terrific ending and a few subsequent plot twists that did surprise, so I consider these to be minor quibbles.

I don’t know if I’ll remember The Deceived in a few weeks’ time but I certainly had fun reading it. If you are looking for some enjoyable summer reading and mysteries are your thing (and you don’t mind a little violent action), then get yourself a copy of The Deceived. I have already ordered the first book in the series from the library.

*This is a review of a book that was sent to me via Library Thing's Early Reviewer Program.

what inspires you?

I have been feeling kind of burned out lately and completely uninspired.

Perhaps I have been over-extending myself. And as much as I need and want to write about my experiences as a cancer patient, mining that particular vein can be draining (and I am trying really hard not to repeat myself too much in the different venues in which I am writing).

I did my morning pages today, for the first time in a while and I found it to be a tough slog. I started to list the things that inspire me and I realized that I have not really been making a lot of space in my life to do these things. My days have been focused on being productive and, perhaps, when I have had down time, I have not been engaging in the kind of activities that fill me up.

I think this needs to change. Yes, I have deadlines (and the house is a mess) but I think that I might spend less time staring at a blank computer screen, struggling over every word (or surfing the net to avoid writing) if I let myself spend a little time getting inspired.

Here's my list. What would be on yours?

Reading books.

Knitting.

Going for long walks.

Spending time in the arboretum and other beautiful places.

Taking in other people's art.

Listening to music.

Laughing.

Hanging out with friends and family.

Being silly with my kids.

Spending time with my spouse.

i've been here before

Yesterday, we had puppy class.

I have been working really hard with little Lucy, doing our homework and practicing, practicing, practicing. We have 'sit' and 'down' nailed.

Or so I thought.

We didn't walk her before class, as we had been busy with Father's Day activities in the morning and we hadn't wanted to make her too tired. As a result, she was excited and wild from the moment we entered the class.

Despite this, I was pretty confident when the trainer asked if Lucy would be the 'demo dog.' However, although the trainer had a juicy piece of hot dog in her hand, Lucy would not sit or lie down, after several minutes of encouragement.

The trainer passed her back to me and moved on to another dog. I casually signalled to Lucy to sit. She sat. I signalled for her to lie down. She lay down.

Sigh.

Lucy is a very smart dog and in her quieter moments is very obedient. But when she is wild (usually in the evenings, unfortunately for the kids) she is defiant, intransigent and a little bit out of control.

And when she is sweet, she is very sweet indeed.

Reminds me of someone else I know and love.

When D., my youngest son, was a toddler, I wanted to knit a hat for a friend's baby. I tried to measure D.'s head. He refused to cooperate. I kept trying for weeks. I would ask nicely, try sneaking up on him when he was distracted or firmly tell him to sit still. I begged and pleaded. All to no avail.

A few months later, when the hat was finished (I guessed at the size) and mailed off to the recipient, I pulled out my tape measure to check my progress on another project. D. approached me and sweetly asked, "Mama, do you want to measure my head?"

To this day, he wants me to measure his head whenever I am using a tape measure.

otherwise engaged

Today's blog has been pre-empted by an afternoon with my sister, a run in the sun with my son (and my sister), an evening at the park and a really good book.

Update: I have a new post up at MyBreastCancerNetwork.Com.

my efficient heart

I spent the better part of today at the hospital getting an echo cardiogram and seeing the oncologist.

The good news is that my heart is functioning just fine. It is most likely that there was never a problem and that the echo just gives a clearer picture.

connected

The hardest thing about membership in my community of cancer bloggers and activists is that we face more than our share of sadness, fear and loss. My friend Jacqueline once remarked that we have not been brought together "by our shared interest in quilting."

Two members of my community got bad news this week and I have been thinking about them a lot. I am struck by Rebecca's humourous description of her recurrence (which involves both potato and spaceship analogies) and Andrea's strength and grace as she choses between more treatment or hospice care.

But I am sad.

And a little bit scared.

I think I am going to go sit outside in the sun with the doggies now.

book review: home girl (building a dream house on a lawless block)*

In this memoir, Judith Matloff tells of quitting her job as an international correspondent (who very frequently worked in war zones), to seek stability and peace in her home country. When she and her husband buy a an affordable (read completely dilapidated) former crack house in Harlem, she finds her war zone skills being put to good use once again.

One of the things that I most appreciated about this book was the author’s intelligent writing and progressive analysis. She has a solid understanding of the economics behind the drug industry (what she doesn’t know at the outset she sets about researching in a way that really spoke to this former researcher) and manages to portray even the most sophisticated of dealers and hardened of addicts (along with those who oppose them) in a somewhat sympathetic light.

This book was a compelling read and the diverse cast of characters had me laughing, crying and turning the pages. I really enjoyed this book and it has made me want to seek out some of Matloff’s more journalistic writing.

*This is a review of a book that was sent to me via Library Thing's Early Reviewer Program.

I just found a link to this promotional video for the book. It's a hoot, whether you've read the book or not. And I think her respect for the members of her community is pretty clear.

mothers with cancer

Some people just seem to be 'doers.'

Since I was first diagnosed with breast cancer, in January 2006, I have bemoaned the lack of resources for mothers with cancer. I have attempted to address this problem by blogging here and by seeking out like-minded women in my online community.

But one woman I know (and I only found her recently through BlogHer, although I can't imagine how I missed this incredible mom, blogger and recent survivor of inflammatory breast cancer), not only noted the lack of resources for moms, she set out to do something about it. Susan (aka Whymommy) proposed a group blog that would act as a resource for mothers with cancer and within days has signed up sixteen moms, registered the domain name, set up the blog, posted profiles and got the word out that it was time for introductory posts to be posted. It all happened so fast, my head is still spinning.

Mothers with Cancer officially launched today and my introductory post went up last Friday. But don't just read my story (many of you know it already), check out the other women who are blogging there as well.

Each story is as individual as the woman who wrote it. We differ in writing styles, kinds of cancer, date of diagnosis, treatment experiences and prognoses. Our children are all different ages and our parenting styles no doubt differ as well. But we are all mothers with cancer, who want the best for our kids and who want to reach out to others who may find themselves in the same situation.

I feel very honoured to be a part of this group.

Update: Speaking of parenting through cancer, my new post is up at MyBreastCancerNetwork.com.

not here today

Oh my gosh but puppies can be a lot of work.

Today, I am here.

And here (tell you more about this on Monday).

I'm afraid I'm too tired to give you anything else. And I am kind of sick of my own stories, you know?

getting out in the world

Starting this week, I will now be posting twice weekly at MyBreastCancerNetwork.com, as well as acting as one of their patient "experts" (I cannot tell you how weird it is to see that bright yellow "EXPERT" above my head when I post a reply in their nifty Questions section).

You can check out my first post here.

Let me know what you think.

What other things do you think I should write about? My second post isn't up yet but it's about being your own advocate, speaking up and asking questions (I have lots more to say on this subject and will likely do so in future posts). Any suggestions would be most welcome.

moments of joy

I have a cherished memory. I was in my early twenties and working in New Brunswick at a summer English language program for adults. Students came from all over the world (but mostly from Quebec) and lived in residence on a university campus.

The staff, most of whom were young, lived in residence with the students and were (in addition to teaching all day and coordinating recreational activities) in charge of patrolling the halls at night to ensure that only English was being spoken (every student signed a contract to that effect and agreed that if they were caught in violation of this rule three times, then they would be sent home. I have never heard of a university based program to be as tough as this one. But it worked). Most of us loved the work but it was intense, exhausting (the hours were very long) and, at times, very stressful. And it was exactly the environment that fostered strong bonds between staff members.

One evening, most of the staff were told that we could have an unexpected day off. At eleven o'clock that night, a bunch of us piled into two cars and drove all night to a friend's cottage (stopping only for gas and to take pictures at the world's longest covered bridge). We arrived at dawn (I couldn't tell you where exactly, but it was beautiful), and a few of us immediately went to put on our suits and go play in the rapids. I remember laughing and playing in the cool water as the sun came up, then crashing for a couple of hours on the cottage floor. Later that morning, we all went for a paddle and I remember drifting lazily in the sun (I am still a very lazy paddler).

We left after dinner that night, to be back in time for work the next morning.

I have lost touch with all of my friends from that day but the memory remains a special one, as a time that I was joyfully living right in the moment.

I was feeling a bit sad the other day as I reflected that I am unlikely to ever have that kind of experience again, what with responsibility, health and (let's face it) age all working against me.

But then I realized that such joyful moments occur routinely, I just need to remember to be open to them. And my kids help a lot with that.

A couple of weeks ago, S. had his birthday party. This was the first such party he wanted in years, so we agreed to go all out and have it at the movie theatre. They were such a nice group of kids and had a great time being silly together! And as I looked down the aisle and took in nine enraptured faces (we saw the new Indiana Jones movie. Good fun), each kid balancing popcorn on skinny knees, I realized that I was having one of those moments. Pure joy.

Cross-posted to Mommybloggers.

i love the internet

Found this recipe, which became dinner (we had a 'cross rib roast' thawing. I had never heard of such a thing).

When I realized I didn't have rosemary, I asked the internet what to do and found out I could substitute savory.

It was delicious.

I am off to bed very soon (I am as tired as when my kids were babies) and will offer up a more coherent post tomorrow.

Good night.

my little leap of faith

Meet Lucy (she's the furrier one, on the right).

She's a Tibetan Terrier and she has just joined my family.

TTs can live for as long as seventeen years.

How ambitious am I?

We really wanted to get a dog from a shelter or a rescue organization (J-Dog is a rescue and possibly the best dog in the history of dog-dom). But we needed a dog that is healthy, good with kids, other dogs and cats (we almost adopted a wheaten terrier from a rescue group during winter but when the dog met a cat, he tried to eat it. Literally).

And hypoallergenic (D. is mildly allergic to both dogs and cats and we couldn't in good conscious bring another dog into the house who would irritate his allergies).

We also needed a dog who would happily come on long walks or runs with me when I am well and take it easier on the weeks I have treatment. After a year of cruising the internet and working the phones (I reached out to rescue groups across Canada and into the US), I reluctantly admitted defeat.

So we chose a dog from a very responsible breeder and a relatively rare breed with few genetic health problems.

And she's really sweet and cute, too.

I am almost as exhausted as right after my kids were born.

And very nearly as blissed out.

And, for the record, if something does happen and I am unable to take care of this sweet puppy (who we are all working very hard to train), T. and the boys will take good care of her. And of J-Dog. And even of our belligerent cat.

Because when this family adopts an animal, it's for life.