in translation

The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).

Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:

Nurse: 

"You're depressed. Why?"

Me: 

"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.") 

"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room"). 

"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")

Next time, I'm stuffing the damn form into the bottom of my purse.

kitchen conversation (he's so, so right)

My spouse (after listening to lengthy rant #342 yesterday): "Not to excuse that person's bad behaviour, but a lot of things piss you off these days."

Me: "True."

Spouse: "Oh! We forgot to put the compost out!"

Me: (String of expletives, unprintable in a blog my children might read).

Spouse (Meaningful silence)

Then we both burst out laughing.

I need to get some perspective.

But at least I can still laugh at myself.

generation gap

On Tuesday, as I waited at the Heart Institute for my regular echocardiogram, I had the following brief conversation with the older gentleman sitting beside me.

Me: Is that a Playbook?

Him: I don't play! This is an ipad!

Me: Oh. I was just curious about the Blackberry version of the tablet.

Him  (scornfully): Do you have a Blackberry?

Me: I do.

I didn't bother explaining that I don't find touch screens to be intuitive and that I prefer an actual keyboard for sending emails and texting. Instead, I pulled out my knitting, thus eradicating all doubt that I was the Luddite in our conversation.

alone on mothers' day

When my spouse first mentioned that he was thinking of taking the boys to the Toronto Comic Arts Festival in Toronto, I protested, "But that's Mothers' Day week end!"

Then I stopped to think.

"Would you be taking both boys?"

"I think I'd have to."

After a moment's thought (empty house! to myself! quiet writing and reading time!), I bravely said, "I think you should go. I don't want to deprive the boys of this chance."

My spouse (clueing in) "Do you want your Mother's Day present to be a week end by yourself?"

Me shaking my head and stammering and not quite keeping a straight face, "I'll miss you."

So they went. And I have missed them. I've also slept more than 8 hours each night, done a considerable amount of cleaning, read a book, watched stuff on Netflix, had dinner with a friend and taken the dog for a run. I still have time to catch up on some writing, make soup, take the dog out again and do most of the laundry. I'll be starting the week of with far less stress than I often do.

My boys had a lot of fun this week end doing things I wouldn't have particularly cared to do (even Grandma went to see Thor last night). I felt a pang of guilt when they left but I quickly let that go. It sounds like they've had a great time. And soon enough they will be home and I will once again embrace the chaos of my family.

Happy Mothers' Day!

bittersweet moment

Yesterday afternoon, my baby fell asleep on my chest.

He's almost 8 now and it had been years since this happened. He had two late nights followed by two early mornings, and he'd been tired and cranky. I suggested we curl up in bed for some quiet time. He had a new book to crack open and he was keen.

But after awhile he grew restless. We talked about putting on a movie. I told him I felt tired and lazy. He said he did, too. After a few moments of lying quietly, his breath began to slow.

Suddenly, he sat up, “Mama, could you stop feeling so lazy. I thought we were going to watch a movie!”

“We could do that,” I answered. “But I thought we were going to have a little snooze first.”

To my surprise, he said, “OK. I'll have a little snooze.” He put his head on my chest, and within seconds was sleeping soundly.

We lay there like that for more than an hour (at one point he woke up, said “Where'd my book go?” I said, “You've been sleeping.” He said “Oh!” and went back to sleep), and I was blissed out. I was happy to have my book within reach but I spent a long time just looking at him, listening to him breathe and loving the feel of his weight on my chest.

As I said, this was the first time this had happened in years. And it was quite possibly the last.

All too soon, he woke and we went on with our afternoon. If I close my eyes and listen to my own slow breaths, I can still feel his weight on my chest.

i can relate to this...

...and so can, I would wager, anyone who has been harassed by  condescended to infantilized by dealt with an insurance company on health related matters.

Especially if you have been on long-term disability for any length of time, you can expect regular correspondence. Blogger Katherine describes this experience:

"But as sure as the swallows return to Capistrano, every March CIGNA sends me information on its Cancer Support program. Last year’s began “Good health is a gift.” This year’s reads like a grade school report:


Dear KATHERINE O’BRIEN:


The American Cancer Society estimates that two men and one in three women will face cancer in their lifetime. Although these are scary statistics, CIGNA HealthCare wants you to know we’re here to help…"

Most of us just sigh, groan, maybe yell a little and then toss the letters into the recycling bin (unless it is one of the letters making demands to send information we have alread sent them SEVERAL TIMES. Then we scream a little louder, call the company, get transferred to voice mail, leave a message and then never hear back, send the info as requested and then get ANOTHER LETTER requesting the SAME INFORMATION and scream some more. Or maybe that's just me.). After years of this kind of correspondence, Katherine decided to write back (CIGNA is her insurance company):

"Dear DOUG:


Thank you for your letter of March 2010! I couldn’t agree more that good health is a gift! I was blown away that you want to help me make the most of it.


It was gratifying to know that “as health care claims are submitted to us, we review them and identify steps you might take to help improve your health.” Gosh. I feel a little guilty. I mean, you are poring over my health claims and I am doing bupkis for you. Maybe I could clean out the coffee room fridge in Bloomfield some time? Police the parking lot? Just let me know.


As you might have gleaned from your research, I have metastatic breast cancer. My doctor says that in 2010, there’s no cure for metastatic breast cancer. Of course that’s what she said in 2009. So I do intend to doublecheck in 2011. I will keep you posted...


...I think it is important to take care of me, too. I see Dr. Gaynor once a month. It might be hard to see her more regularly than that. Unless she wants to join my mahjong group. I will make inquiries."

You can read the rest of the letter and Katherine's post about it on her blog, ihatebreastcancer. Thanks to Anna Rachnel (ccchronicles) of The Cancer Culture Chronicles for telling us about Katherine's letter via Twitter.

mixed. but good. i think.

And I'm not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.

Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won't get in to see the gastroenterologist until March 21st). All my results were negative - no celiac, no bacterial infection, no cancer. It's all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I'd felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, "It's time to take a break."

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I'm being taken off the chemotherapy not because I've been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, "You can't stay on vinorelbine forever."

I'm going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don't think it has the lasting toxicity of chemotherapy drugs. I'm likely to bounce back more quickly after treatments.

So we'll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.

Cross-posted to Mothers With Cancer.

the dog ate it

My 12 year old has been asking for a Blu-Ray player. 

We've informed him, many times, that given our current need for fiscal restraint, this kind of luxury is not in the cards, for the time being.

This morning, he and I were cuddling with the dog and talking about how much we love her. S. asked about her ongoing skin issues and when she's going to start her latest hypoallergenic diet. 

Me: "When the new food arrives at the vet."

S.: "Poor Lucy."

Me (sensing a "teachable moment"): "We had another big vet bill this week. Enough to pay for several Blu-Ray players."

S.: "Really?"

Me: "Yup. She's not the reason that finances are tight but she's one of our priorities. We love her and we have a responsibility to take care of her. The food, medicine and tests - it all adds up."

S. (grinning affectionately at Lucy): "So the dog ate my Blu-Ray."

He's a good kid.

cluck, cluck.

The following things have occurred in my recent past. My spouse has moved his office to our house and I have acquired a smart phone and the knowledge/ability to send text messages.

 Now that we are in the same house all day, it's possible that we actually speak less. He works in the attic and when I want to talk to him, instead of picking up the phone to call him, as I used to, I'm more apt to send a text (I'm late to the texting party, I know but I'm making up for lost time with a vengeance).

The following conversation took place this morning, via text message (the blog post in question is the one directly below about last night's dream):

Me: "Can you proof my blog?"

T.: "Sure."

Me: "Thanks!"

T. (a few minutes later): "No typos, that I could see. Just weirdness."

Me: "Do you want to have me committed?"

T.: "Hardly. We need the eggs."

Me: "I don't understand."

T.: "Old joke about a man who thought he was a chicken."

Me: "SNORT."

why i love twitter

People often ask what it is I love about Twitter. I tell them how useful it is to get advice and share information - about resources, local business, good things to read, etc. I also love the quick exchanges of ideas, the wit and the humour.

Twitter is fun.

And last week, I found a new reason to love Twitter. Trading. Check out the two exchanges below in which I gained a Canada Reads book from the author and the best quiche that I've ever eaten. Read each conversation from the bottom up (sorry it's so small and blurry - click on each image to make it larger and much easier to read).

Postcript: When I couldn't figure out how to capture and embed Twitter conversations, I turned to Twitter for help. I got several great responses and, in the end a friend who I met via LibraryThing and got to know on Twitter, actually the capturing forming and sent it to me as an email.

The blurriness is my fault but it's thanks to her I got it done.

I love social media.

it gets better. and it can get better now, too.

Chances are very good that you've already heard of the It Gets Better Project, which was started in response to a series of suicides. Young people (some as young as 13 years old) are choosing to kill themselves rather than continue to deal with being bullied or shamed.

I love this powerful, touching and often funny series of videos aimed to give hope to young (and older) teens who are feeling depressed or alone because of their real or perceived sexual orientation.

This one from Pixar is the favourite in my house.




A day or two ago, The Maven shared this video on Facebook. These kids are saying that things need to get better now, not just in the future. It's brilliant and I am in awe.

Reteaching Gender and Sexuality from PUT THIS ON THE MAP on Vimeo.

just another conversation

I've started to record bits of conversation that occur at our house. This one took place yesterday morning betweem my spouse and me.

T.: "Can you send a Facebook message to someone who's not your Friend on Facebook?"

Me: "You can. I get emails all the time from strange men saying they can't live without me."

T.: "You do?"

Me: "Yes, sometimes they say they saw my photo and that they can't stop thinking about me."

T.: "Wow."

Me: "I especially wonder about those because my profile photo is of the dog."

(Conversation interrupted by laughter)

Me: "I think they might be spam."

T.: "In those cases, I hope they are, because the alternative is disturbing."

well, hello there

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

0-2-9-14

Yesterday was a chemo day, so I don't have much in the way of original thought to offer up to you.

It was more stressful and a longer day than most but made infinitely easier by the presence of my friend T. We had lots to talk about and she ably distracted me when I felt the stress levels rising (the guy beside me was, for much of the time, having a shouted conversation with the man across the "pod."). She even tucked me in very sweetly as I settled in for my post Demerol nap.

Between bloodwork and chemo, T. and I went out to lunch at The Green Door. Over our veggies, we got to talking about food. I've been seeing a nutritionist, who has made some initial adjustments to my diet (minimal sugar, no dairy, more raw food, a high quality protein with every meal or snack). Since I told the nutrionist that I drank no more than five drinks a week, I've also been trying to stick to that. What I need to figure out is what exactly constitutes a drink. Is a pint of beer one drink? Two? One and a half?

T. told me that her doctor has been telling all his patients to stick to the following formula: 0-2-9-14

0 - at least one night every week you have no booze at all.

2- no more than 2 drinks at any given time.

9- women should have no more than 9 drinks per week.

14 - the maximum for men.

That makes sense to me and doesn't seem too onerous. Of course, if one is hoping to lose weight, drinking less (or not at all!) makes sense. Empty calories, decreased willpower, increased appetite...there really are lots of sensible reasons to forego the booze. I do enjoy beer and wine, though and don't do well when I try to cut anything I like out completely.

What do you think?

not unrelated to my last post

Last night I dreamed that I had a lump in the lymph nodes above my collar bone.

I woke up terrified.

The comments on my last post were among the most thoughtful, moving and provocative that I've ever read. I have much to think about. Go read the stories that and responses that women shared with me. I feel grateful to each one of them.

Today, I am going to take the dogs for a walk and then ride my bike (unless I decide it's too cold) to Sassymonkey's house, where we will eat, drink, knit, watch a movie that has nothing at all to do with cancer.

stepping in the right direction

On the Saturday evening of the 10th Annual Conference For Young Women Affected By Breast Cancer, a group of participants went out for dinner.

Many of us had not met before that evening. We came from Texas, California, Massachussetts and Georgia. I was the lone Canadian. It was a truly lovely evening. The food was great and the conversation flowed - from the trivial to subjects of greater import, from the general to the intensely personal.

About half-way through dinner, the subject of health care reform was raised. I said that, as a Canadian, I couldn't understand why anyone would oppose universal health care, especially anyone who has had a life-threatening illness.

Most around the table agreed with me, while one woman stated that she was resistant to any more government interference in people's lives. I soon found myself addressing the pervading myths about our health care system and was asked whether it was true that Canadians were cut off from health care when we turn 75.

I said, "No, that's not true and we don't have death panels, either."

The conversation was very respectful and never tense (unlike many, many other debates on this issue) and soon we moved on to other subjects.

And today, I want to congratulate my American friends for ignoring the fear-mongering and taking a significant step towards greater access to health care.

eye witnessed

Yesterday, the Globe and Mail ran this article about Joe Webber, a man from Aylmer, Ontario, who was falsely accused of forcible confinement and robbery. He was convicted and served nineteen months in jail, based solely on eye witness testimony Although, the perpetrators of the crime were masked, one of the victims of the home invasion identified Webber, claiming to recognize his "bright blue eyes."

Webber's eyes are actually gray. 

Webber was sentenced to 7 1/2 years in jail but was later cleared when two other men confessed to the crime.

Duane Hicks, who identified Webber, remains adamant that it was Webber and his blue (really gray) eyes that he saw behind the mask.

It's a fascinating and tragic story but it's not the first time, in recent weeks, that I've had cause to think about the unreliability of eye witnesses.

A couple of weeks ago, I was walking the dogs home from the park when I saw a woman and her Bernese Mountain Dog coming towards me. I knew them both from the park and called out a greeting as she grew closer.

J-Dog, my older, bigger dog (55 lbs, the Bernese was much bigger than he was) has been getting a little crochety in his old age. He's taken a dislike to younger male dogs, especially when he's on leash. There's never been any serious fighting but, as a precautionary measure, I've been crossing the street or making J-Dog sit when other dogs are approaching on leash. This time, though, since the dogs had met many times, I didn't think to do it.

When the Bernese got close, Jasper lunged at him and growled. The other dog reacted the same way, his owner went to pull him back and slipped on some ice. She fell into a snow bank and the force of her fall brought her giant dog down on top of her. His paw hit her in the face and cut her lip.

We were both uspet (the humans were. The dogs, having recovered from their tussle, were just standing calmly beside us). I felt terrible not to have foreseen the interaction. We were both apologizing to each other, when two women who had been walking behind us felt the need to jump in, one yelling at me and the other fussing the other dog owner.

They kept asking her over and over again if she was OK. She kept saying "yes!" We both tried explaining that it was fine, that we knew each other and so did the dogs ("That doesn't matter!" one woman exclaimed) but they were zealous in their condemnation of me (and my dog) and vociferous in expressing their anger and outrage.

I realized later, based on a few things they said, that both women believed that they had seen Jasper attack the other dog owner and the Bernese leaping in to protect her. 

And I'm sure they would have made sworn statements to that effect.

The dogs and I ran into the Bernese and his human (off-leash) in the dog park and the dogs played together happily. I apologized again for not anticipating J-Dog's bad behaviouor and she once again stated that she feels both dogs (and both owners) were at fault. She also commented on how the intervention of those "witnesses" had just made things so much worse.

I've learned my lesson. I'm now completely consistent in making J-Dog sit when another dog approaches, even when I know it's a dog he likes. And it goes without saying that the only comparison to what happened to J-Dog and Joe Webber was the absolute conviction on the part of witnesses that they saw something that did not happen.

the world needs a little more silliness

Formspring is a nifty new site that allows folks to ask each other questions. I'm still figuring it out but it seems like harmless fun.

Go ahead, ask me anything: http://formspring.me/lauriek

I don't promise to answer every question but I will answer the ones that intrigue me.

Have you tried out Formspring? What do you think?

(Oh, and in case you're wondering, this post was not prompted by any contact from Formspring. I just read about it a few times and my curiosity was peaked enough to try it out).

writing your way through breast cancer

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

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

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

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

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

talking "not done yet."

I'm going to be on BlogTalk radio tomorrow!

The show: Lovebabz Lovetalk.

The time: 12:30-1:15 EST.

The call-in number: (718) 766-4895

The subject: Not Done Yet, Living Through Breast Cancer.

Please call in, if you can. I am really looking forward to this on-air chat with my friend Babz.