I had a heart scan at the hospital today.
I rode my bike there up some pretty steep hills.
I was so engrossed in my book, I didn't hear the technician the first time he called me.
I fell asleep during on the scan table.
Tuesday, October 18, 2011
Monday, October 17, 2011
a perfect example (one for the pinxploitation hall of shame)
From the Campaign for Safe Cosmetics:
Procter & Gamble's cosmetics division is making a big deal this month about supporting early breast cancer detection, an important issue. But we think P&G should start with prevention by promising to stop using chemicals linked to cancer in its products.According to the Skin Deep database, P&G still uses parabens – in particular, methylparaben – in hundreds of its Cover Girl, Max Factor, Infusium and other products.
Parabens are compounds widely used as antimicrobial preservatives in cosmetics products. They're also estrogen mimickers, and have been found in breast tumors.
A new study found that methylparaben can not only cause healthy breast cells to behave like cancer cells, but also interfere with the effectiveness of tamoxifen, an important breast cancer drug.
Please let P&G and everyone else know that this pinxploitation is completely unacceptable. If they care about more than pinkwashing their products, they would stop including carcinogens among the ingredients of so many of their products.
Friday, October 14, 2011
"wear black and save the rack" (from 'ihatebreastcancer')
Words from a woman after my own heart:
...we here at the I Hate Metastatic Breast Cancer Foundation have a saying: If You Can’t Beat ‘em, Join ‘em.
I am so pleased to embrace this noble cause for all of us on this brave and selfless journey of ours. Yes, the I Hate Metastatic Breast Cancer Foundation has now latched on to a surefire vehicle to beef up the anemic state of metastatic breast cancer research*: BRACELETS! But not just any bracelets, MBC Bracelets.
Our MBC bracelets are not a gaudy yellow or girly pink but a tasteful and understated black. Each one comes with a photo and the personal story of a U.S. person who died from breast cancer last year. Choose from more than 45,000 stories! More added every day!
You can read the rest of the post at ihatebreastcancer.
Thursday, October 13, 2011
please be aware
Six years ago, I thought I had a pretty good vocabulary but I didn't know the meaning of "metastatic" until I was diagnosed with breast cancer.
According to the American Cancer Society, only 15 per cent of women with mets will still be alive 5 years after their diagnosis. I'm one of the lucky ones ( stats are bogus anyway).
I think one of the reasons I get so angry at campaigns aimed at "saving [insert infantile name for 'breasts' here]" is that, for those of us with metastatic breast cancer, the breast was only the beginning. Our cancer has spread to our bones, brains, liver, lungs or skin. We are "the bad girls of breast cancer."
And we want you to know about us.
We are:
Delaney
Kristina
Susannah
And we remember:
Wednesday, October 05, 2011
go read this
Throughout BREAST CANCER AWARENESS month, I'm going to be featuring posts from around the web that really resonate with me on the subject of pinkwashing.
Today's post called Breast Cancer Awareness, Jersey Shore Style is from The Cancer Culture Chronicles.
"This is how "In Jersey / Jersey Shore Magazine" depicts what they think is important for the women of the Jersey Shore area to know about breast cancer...On page 52 we're treated to a Tickled Pink fashion spread of glossy made-up survivors in their breast cancer charity of choice t-shirts and then bedazzled in all manner of pink ribbon accessories and jewellery all available for purchase at listed stockists. As for the copy; here's my personal favorite..."showcased here in an array of pink items, they show a verve and vitality that is the essence of the spirit of all survivors...." Nothing says verve and vitality like a $139.95 Sparkle Strong Breast Cancer Survivor Necklace I guess!"
If you want to understand more about living with metastatic breast cancer and why some of us bristle (and even rage) about all the pink crap, check out the info on the right side of the blog. Well written, informative and entertaining. This blog is well worth reading.
Tuesday, October 04, 2011
being the first
It turns out that a cardio-oncologist is a doc who knows something about the heart and oncology drugs. The guy I met yesterday looked way too young too have studied for that many years but really did seem to know his stuff.
Perhaps I'm just getting old.
Some things I learned:
My heart was permanently damaged by the Adriamycin. As a result, my ejection fraction has been bouncing around the low range of normal for years.
Echo cardiograms have a ten point margin of error, so my ejection fraction may not have dropped as much as it appeared.
I have no symptoms of heart failure.
Should I have the symptoms of heart failure, I should go to emergency (no kidding!).
There is no reason that I cannot engage in vigorous excercise (there goes my excuse for not running).
I don't need to stop Herceptin (awesome news).
I might have to go on a drug that protects my heart. The doc is on the fence about it right now but if my ejection fraction drops much more, than he will prescribe it.
Even then, I still won't have to stop Herceptin.
I am being sent for a MUGA - a different kind of heart scan - to see if it picks up anything different than my echo.
I mentioned that there must be some uncertainty, given that he likely hasn't seen many people who've been on Herceptin on a long term basis.
He told me that I am the first. But that there will likely be many more.
Monday, October 03, 2011
no pink for profit runs/walks for the cure v2.0
The miraculous photo in which we all have our eyes open! photo: I. Hendel
There was some incredible coverage in the Ottawa Citizen this year. All the articles listed below were also in the Saturday print version of the paper (for my American friends: the Saturday papers have the highest circulation, as yours do on Sunday):
Thanks so much to all the team members (including those who who were not able to attend the walk/run) and to everyone who donated. Special thanks to Andrea (who is the real woman wearing the pinnie in the Citizen photos) for holding my hand through the surreal filming of the video and to our honorary team members, Tim (picked up the team kits and t-shirts) Ian (took photos and custody of our stuff while we walked and Lee (stepped up with kid distraction when it was very much needed).
May we all be healthy and able to do it next year. And may there soon come a time when the Run for the Cure is a thing of the past.
"I'm running for...Deanna, Susan, Judy (and me).
In memory of Sarah and Rebecca."
In memory of Sarah and Rebecca."
photo: A. Ross
Wednesday, September 21, 2011
no pink for profit runs (or walks) for the cure in 2011
No Pink for Profit has been formed again for the 2011 Run for the Cure.
Want to help raise the right kind of awareness and help fund advocacy, outreach and research?
You can make an online donation. It's easy! It's fun! It's for a good cause.
Your support is very much appreciated.
Tuesday, September 20, 2011
this could be me
I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment.
However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.
Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.
From the Canadian Breast Cancer Network:
We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.
The Issue:
HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.
This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.
Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?
Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca
Friday, September 16, 2011
for Rebecca
The memorial for my friend Rebecca is tomorrow. I won't be able to be there but I will be thinking of her all day. Maybe I'll do something silly and fun. I'll eat good food. I might even sing a little off key, in lieu of taking part in the karaoke that's planned for her celebration.
Because I can't be there, I asked my friends to go out and do something fun and dedicate the memory to Rebecca and let me know. Here are some examples of the the fun and the joy that was experienced as a tribute to her:
Maggie sang with her friends and dedicated the happiest song for Rebecca.
Nat danced in her kitchen to a band called “The Drop-Kick Murphys.”
A friend of Rebecca's went to the beach. She also said that Rebecca taught her “alot about about life.”
Jenny decided not to work late and went for a bike ride along the river. She says Rebecca reminded her that “life is a gift.”
Lee Ann said, “I dedicate my wonderful day on Saturday riding the life sized Thomas the Tank Engine with my 3 year old son Noah to your friend Rebecca. Such simple, beautiful kid fun, seeing this wonder through Noah's eyes.”
Lene thought of Rebecca as she took on a new adventure – her first photographic portrait commission.
Rebecca C. went for a swim with her mother in a moonlit pool. She said, “We were tired and could easily have passed on the opportunity, but in the spirit of your request, I urged us on. Gorgeous night, lovely memory, living in the moment. “
Rachel went to the amusement park and got on the “big bad roller coaster that I have been avoiding.”
Blondie wrote Rebecca's name on her hand and took her, in spirit to a big rock concert and to the state fair. She wrote about facing her fears and having on her blog.
Julie Harrison promised to do something that was “pure fun.”
Kate spent her week end at a horse show and “stayed and watched and cheered.” She said it was “great fun” and dedicated her time to Rebecca and all her friends and family with breast cancer.Jillian spent the day at the beach with her family.Tish laughed with friends at a party and with her sister at the gym. She dedicated her laughter to Rebecca.
Karin went for a swim on a hot day, “I watched my kids be brave and have a blast: RJ and RM held hands as they dove to the bottom of the deep end, and CJ rocketed down the slide sans life jacket. Floating in the water, I stopped to think of your friend Rebecca.”
Judy went out to dinner at one of her favourite restaurants and had a sour apple martini.
Jeanne went to the beach of her pups, “one of which is a pitbull named 'Denver'.”
Jojo went sailing on a beautiful lake.
Amanda cuddled and played with her puppy. She added, “yesterday as we worked on a swingset for our kids, I romped with him, talking to him about the pine cones he was chomping and chirping at him as he frolicked. It was incredible to really be present with him. As his red collar winked from between his floppy black and white hair, I was reminded of this post and of your wishes in Rebecca’s honor.”
Jill wrote, “I intend to ride my bike to the top of Mt. Montara within the next week, and when I do, I’ll sit on the little bench overlooking the Pacific and say a prayer for your friend, Rebecca, as well as send up some thanks for her gracing the lives of those who loved her. “
Shallowgal “blew off swim practice” and took her boys out for chilli dogs. She toasted Rebecca over her dinner.
Cait had a fun day with her kids and though about Rebecca as she pushed them on the swing.
Sylvia thought of Rebecca as she watched her daughter jump off the diving board for the very first time.
Darcy toasted Rebecca with friends and family as they gathered as a big group at a cottage with lots of good food and fun.
Celeste thought of Rebecca as she took a vacation with good girlfriends.
Michael paddle-whacked a tennis ball into the lake for his wolf-hound cross named Boo. He's sure that Boo would have loved Diezel.
In memory of Rebecca, Frederica went for a bareback ride on her daughter's pony. She writes, “The real fun started when she started trotting: she was going like a bat out of hell, I was popping up and down like a jackhammer trying to post, grinning from ear to ear.”
Andrea promised to have fun with her daughter.
Deb spent an evening knitting and drinking beer with two good friends.
Cathie tickled her girls, hugged them and rolled around on the floor with them.
Allie “stopped by McFatty for a burger and DQ for a strawberry shake.” She added, “Thinking also of Rebecca's family, of Diezel, and of the joy of a scooter and open roads. Thanks Rebecca for the steady example of choosing well, every day.”
And I went to a dog rescue fundraiser called Take the Plunge. We saw dogs pulling scooters, jumping off a dock into a pool, doing agility runs and just generally milling around. I lost count of the different breeds. The highlight was watching a 10.5 year old pit bull sail off a dock and fly through the air, as his owner fist-pumped in triumph.
Rebecca had a big impact on me. I miss her. I send much love to all those who will gather tomorrow in her memory.
Thursday, September 15, 2011
go the (bleep) to sleep. and get up earlier.
I live in a house full of night owls. Left to their own devices, my boys and their father would be up half the night and sleep into the late morning (or later, when it comes to my teenager). I think it's genetic, as many members of Tim's family have the same internal clock.
In contrast to them, I'm practically a morning person. However, I feel my most refreshed and energetic when I regularly sleep between the hours of midnight and 8am.
I don't subscribe to the notion that being an early riser is more virtuous but I do admit that it's more practical (especially when trying to get two kids to school on time in the morning), so for the last couple of weeks, we've all been getting up at 7. The first few days it was painful. It's easier now but I can't say that I feel bright eyed and bushy tailed at any point during the day.
I'm tired. And I'm finding that I'm not getting much more done, because I seem to need more sleep to compensate for getting up earlier.
Will it get any easier? Will my body adjust eventually? What's your internal clock like? Have you tried to change it?
(I edited this post as I sat with my 8 year old. It's 9:30 at night and, despite being tired all day, he's suddenly wide awake and full of energy. Please don't suggest a bed-time routine. We have tried it all.)
Friday, September 09, 2011
just slightly below par
On Wednesday morning, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.
At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I'd had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.
I had no reason (other than history) to believe that the CTs would reveal anything bad and I'd managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I'd been waiting for finally came through at around 5pm, I was a mess.
My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.
Excellent news.
Then I asked about the echo, which surprised Dr. G. He didn't have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.
My ejection fraction is at 48%. The normal range starts at 55%, so I'm really just below that but it's enough of a concern to send me to a cardiologist and to cancel next week's treatment.
My concern is not that there is permanent heart damage (although it's a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?
This drug has been my magic potion, the one I credit with my remission and the fact that I'm here today. I'm not ready to think about giving it up.
Update: I have an appointment with a cardio-oncologist on October 3rd.
Cross-posted to Mothers With Cancer.
Thursday, September 08, 2011
and so it begins
Received September 6:
Hi Laurie,
Would you be interested in guest blogging for us in October? I have some fun ways to make it a great partnership for both of us AND for the fight against breast cancer. If you're interested, let me know and I'll send you the proposal!
Julia Fikse
Creator/President
Ta-tas® Brand www.savethetatas.com
Laughter Heals® www.laughterhealsgifts.com
Save the Ta-tas Foundation www.savethetatas.org
Sent September 8:
Dear Julia,No thank you. I suspect that you didn't really look at my blog before making this offer. I have metastatic breast cancer - long past the stage where "saving the ta-tas" is an issue. I may have lost a ta-ta (despite your best efforts) but I am alive, which is what matters.
Also, while I do have a pretty good sense of humour, I don't find your products to be amusing (actually, I find those in the men's section to be distasteful and insensitive). I'd prefer to encourage my readers to donate to organizations that really make a difference and use all the funds (as opposed to 5% of sales) for advocacy, awareness, research and building community.
very sincerely,
Laurie
Tuesday, September 06, 2011
blowing my own horn
Tomorrow, I will have a featured post on BlogHer.
Also, Judy from Just Enjoy Him (and Mothers With Cancer) really liked my book. And she said some very nice things about it. Since I am in awe of Judy, this meant a whole lot to me.
Thursday, September 01, 2011
smiling can't cheat death
I'm a reasonably happy person. And I believe that concentrating on the half full part of the glass has helped me to cope with many aspects of my life, including breast cancer. However, there have been times when a good wallow or a raging tantrum have been just as necessary and cathartic.
And I don't, for even a second, think that people who worried too much, or got mad or who didn't have a positive attitude brought cancer or their own deaths upon themselves. Nor do I believe that temperament or attitude is what causes one person to go into remission and another to succumb to the illness. I find the belief system that blames the patient to be repugnant.
In many ways, cancer is a crap shoot. It helps to have excellent medical care, good nutrition and the resources that help you cope with the disease and the treatments' side effects. But luck plays a big role in survival as well.
I've been thinking about this lately, and so it appears have other women. Yesterday, I stumbled on a great post at Uneasy Pink, by Katie, who, in turn, pointed the way to Coco, guest-posting at Journeying Beyond Breast Cancer. These women really tell it like it is.
Last week, Canada lost Jack Layton, a leader who was, by all accounts active, optimistic and happy. And we lost him way too young. Many media reports used the common phrase "lost his battle with cancer." Jack didn't lose a battle - there was no failure on his part - he got cancer and died. No amount of positive thinking could have changed that.
Cross-posted to Mothers With Cancer.
Tuesday, August 23, 2011
grateful through my tears
"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world." - Hon. Jack Layton (1950-2011)
Friday, August 05, 2011
Tuesday, August 02, 2011
dogs can fly
The day after I wrote the post about my friend Rebecca, I went to Take the Plunge, a fundraiser for local dog rescue organizations. It was a lot of fun. We had the chance to meet many different kinds of dogs and the people who love them. They came in all shapes and sizes, colours and temperaments. We also met a miniature horse and some ferrets. One woman was pushing a cat in a stroller. The cat wasn't strapped in and seemed quite relaxed amidst all the canine chaos.
The central event of the afternoon was the dock diving competition. We watched all kinds of dogs leap after toys into the pool. Some of the dogs needed to be persuaded to get out of the water. Most seemed incredibly pleased with themselves. Everyone - spectators, dogs and their human handlers seemed to be having a wonderful time.
This dog took my breath away:
I thought a lot about Rebecca as I sat in the sun; this was the fun event I had chosen to dedicate to her memory. And then the most incredible thing happened. I watched a pit bull terrier, among all the retrievers and border collies, launch himself off the dock and fly an incredible 18 feet. His owner jumped with joy and fist-pumped the air as she yelled, "Ten and half years old!"
It's not to late to do something fun in Rebecca's memory and let me know. The family is planning a celebration of her life, in accordance with her wishes (they're also asking for suggestions as to what to write on her urn). I'm tracking all the stories you send me and compiling them for the family. I'll eventually publish the list here too.
Saturday, July 23, 2011
do me a favour: honour my friend by having some fun
My friend Rebecca died this week. She was all of 37 years old (if I've done the math right) and she had metastatic breast cancer. She was also one of the funniest people in my online community. She was also generous, straigtforward and honest. My heart goes out to her friends and family - the people she loved, wrote about and who knew her best.
Rebecca left strict instructions that we were to shed no tears after her passing (I'm afraid I've let her down on that front but I've been doing my best) and that, instead of a funeral she wanted a celebration of her life. I'd love to join the party and to hear the stories that those closest to her would be bound to share. Because Rebecca took her fun seriously.
I won't be able to attend the celebration (Rebecca lived in Cape Cod) but I would like to do something. And I need your help.
1. In the next week or so, please go out and do something fun. Do anything at all, as long as it makes you happy. If you need inspiration, Rebecca loved dogs (especially her pit bull, Diezel), cooking, eating out (her restaurant reviews were among my favourite blog posts), her scooter, her little car, road trips, NASCAR, kick boxing, books, funny movies and music. If none of these things appeal to you, please go out and do your own thing. If you like, bring someone with you to join in the fun.
2. Let me know. You can leave me a comment on this blog, send me an email (laurie dot kingston at gmail dot com) or message me on Twitter (I'm @lauriek). Just a few words to let me know what fun thing you did in Rebecca's memory. I'll compile a list and make sure that it gets to her family.
Monday, July 04, 2011
brain scanned
Update: My brain is perfectly normal. I'd still like to see the pictures but normal is very, very good.
I had a routine brain scan today, my first in two years.
I had a routine brain scan today, my first in two years.
It was pretty uneventful (they got the vein for the contrast dye on the first poke) and was over relatively quickly.
I can call for results in a week or so. And I'll probably be told that everything is fine.
I wish things were like in the movies, though and a few minutes after the test, a doctor would look at the images and then we'd discuss them.
I never get to see the pictures. Wouldn't you like to see images of your brain?
This is Patrick Denker's brain. I would like to see mine.
Friday, July 01, 2011
the good things about being Canadian
Today is Canada Day.
I've been feeling pretty out of sorts about my country lately, for a whole bunch of reasons (the most recent of which is our opposition to listing asbestos as a banned substance at the United Nations. Asbestos is a known cause of cancer. This kind of cancer is solely caused by asbestos. Asbestos is banned in Canada. But we still export the stuff. So it's OK to give people in other countries cancer. Shameful.)
And I really don't care about the Royal Visit.
I've only been to Parliament Hill once on Canada Day and that was more than twenty years ago, before I lived in Ottawa.
I'll be spending the day on the road, in advance of an important family event in Toronto. We'll be listening to talking books, breaking up fights between the kids and trying to convince the dog to stay in the back with the suitcases. And I won't feel like I'm missing anything.
But I am a proud Canadian, despite my country's bad choices. And July 1 always provides me with an opportunity to think about what that means. So, in no particular order, here's this year's list of things I like about my country:
Politeness. The other day my son stepped on my toe. We both simultaneous said, "I'm sorry!" There is a certain level of courtesy in our culture that I have come to really appreciate. On the street, between strangers and at home, with those we know best.
Moderation. My younger self is howling with laughter at this one but we Canadians mostly avoid excess of all kinds and I've come to really appreciate that.
Universal health care. Do I really need to explain this one?
Universal health care. Do I really need to explain this one?
Gay Marriage. For six years now. It's not going away and it's no big deal. Except that it is.
Neighbourliness. Canadians are generally good neighbours. We tend to be "live and let live" types (occasionally to our detriment but, mostly, it's a good thing).
An appreciation of good beer. It's not just about quantity but quality too.
The weather. I can't believe I'm saying this but the changeability of Canadian weather is highly entertaining (when it's not downright disastrous). With weather like ours, there is always something for strangers to chat about.
Pedestrian friendly cities. I think the best way to get to know any place is to walk or ride your bike. I love that I can walk so many places in my home town (and it's a good thing, too because our public transit sucks).
And I love that many of you will disagree with me on some of these things (heck, with the exceptions of beer,gay marriage and health care, I may change my own mind tomorrow) and some of you will let me know. Politely.
Happy Canada Day! Have a moderate amount of fun and enjoy yourselves - courteously.
Thursday, June 30, 2011
how i've changed
When I was a young adult, I definitely considered myself to be an extrovert. Then, in 2007, a year or so after my cancer diagnosis (and after being on leave from my job for most of that time), I did the Meyers-Briggs test. The person who explained my results to me said that mine was the most even split between introvert and extrovert that she'd ever seen.
Fast forward to last weekend when I attended the PAB conference. Walking in the door on a Friday night to an environment where it felt like everyone already knew each other was terrifying. My chest tightened, my breathing became shallow and I felt something between "slightly queasy" and "I think I'm about to puke my guts out."
I texted Tim, "This is so hard" and sent out similar messages to the Twitterverse (I will be forever grateful to Flutter for her words of comfort and encouragement).
And then I settled in for a great conference. Did I hide behind my Blackberry? Yes, lots. Did I sit by myself instead of joining other folks? Most of the time. Did I go on the evening boat cruise? I did not (my poor brain was too tired from all the big ideas and and the constant exciting but draining stimulation of the day). But I stayed and I learned and during Saturday lunch and over a couple of breaks I forgot to feel awkward and had a really good time. I even stood up to ask a question on the last day (although I forgot the question when I had the mic in my hand. I found something to babble about). For the most part, I think that's good enough.
Paralyzing anxiety disorders run in my family. And I know that the more you give in, the worse it can get. And I know that I've missed out on some truly wonderful experiences over the last couple of years because I've been too scared to go. I confronted my fear last week end. And I'm proud of that.
Monday, June 27, 2011
mind blown
PAB2011 group photo by Maurizio Ortolani, uploaded to flickr by Martin Jones.
A chance encounter on Bank Street with my friend Andrea Ross led to a plan for a dog walk, which led to a conversation about "PAB", which led to me having my mind blown.
The conference is called PAB 2011 (short for Podcasters Across Borders), and is for anyone who is a creater of "content" of any kind, using any medium. You don't have to know a thing about podcasting to attend, just an open spirit and a readiness to share and absorb ideas. It took place this past week end (June 24-26) and my brain is still very, very full.
This year's theme was "Your story needs to be told. Well." As with every year for the last few, the venue was the wonderful Fourth Stage of the National Arts Centre (no fluorescent lights!) and the setting was intimate. There were two longer keynotes and many more 5 minute "jolts" (this link is to Andrea's amazing jolt from last year, which I have quoted many, many times), juxtaposed with 40 minute presentations and questions from the audience.
There was so damn much to take in and almost as much to tell that I'll be brewing blog posts for the next few days (which will make a change around here. I've been an unmotivated blogger of late). For now, I'll just say that my brain is resonating like the inside of a bell.
Friday, June 24, 2011
Saturday, June 18, 2011
Friday, June 17, 2011
short term planning
I kind of left you in suspense yesterday.
I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo.
Here's what happened next:
We waited.
We played a little Lexulous.
I knit. My hands shook a little.
And then the door swung open and Dr. B. entered the room.
Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.
After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:
Dr. B.: "I'd bet you'd like to extend this break from chemo."
Me (nodding vigorously): "Yes!"
Dr. B.: "For the summer?"
Me: "Or longer? I'd love to think about longer term plans."
And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."
While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.
It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.
But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.
This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.
I felt ashamed.
However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.
It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.
So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.
Thursday, June 16, 2011
not so jaded after all
Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.
I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions.
One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.
But it was worth it.
The first person I met was the nurse who works with my oncologist. It was the first time we met face to face. After checking me in, she hesitated for a moment, then looked me right in the eyes and said, "I read the article you wrote for the CBCN newsletter (after the conference I attended last fall). It was wonderful. You are very inspiring."
Friday, June 03, 2011
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