One woman's stories, adventures, observations and rants, lived through and beyond metastatic breast cancer.
Thursday, December 31, 2009
Saturday, December 19, 2009
Thursday, December 17, 2009
Wednesday, December 16, 2009
Tuesday, December 15, 2009
Monday, December 14, 2009
melancholy meme
These are questions from the Proust quiz in a recent issue of Vanity Fair magazine. I stole the idea from a friend (she did it on Facebook, so I won't identify her here) and I've been thinking of it ever since.
It was interesting to do. My answers reflect the fact that I have been in a somewhat melancholy mood of late. I tried to answer without censoring myself.
Feel free to answer the questions in the comments or to link to your on blog if you do it there.
What is your idea of perfect happiness?
Being somewhere beautiful, being with someone I love. Happiness can come out of nowhere. I am better trained to notice it now.
What is your greatest fear?
That I will die and my kids will forget me.
What is the trait you most deplore in yourself?
Lack of discipline and the fear that causes it.
What is the trait you most deplore in others?
Intolerance of difference.
On what occasion do you lie?
Sometimes to protect others' feelings. Occasionally to protect myself.
What is your greatest extravagance?
It used to be shoes. I do like nice glasses but that's only every couple of years. I'd have to say that now, it's eating out and yarn.
What is your current state of mind?
A little fragile, anxious and blue. Figuring out how to get past it.
What is the quality you most like in a man?
Intelligence. The ability to laugh at himself. And if he's in love with me, that's pretty attractive, too. OK, so that's three. I did say that I lack discipline.
What is the quality you most like in a woman?
Intelligence, strength and a sense of humour.
Which words or phrases do you most overuse?
Lately, it's "Oh, for pity's sake!" Trying to excise the potty mouth.
When and where were you happiest?
No particular moment in time. In PEI with T., in London with S., at the family cottage, in the arboretum with the dogs...
Who are your favorite writers?
Depends on my mood. John Steinbeck, Jane Austen, Joseph Boyden, Sarah Waters...and lots of mystery novelists too.
Which talent would you most like to have?
I wish I could sing.
If you could change one thing about your family, what would it be?
I'd make us all appreciate what we have.
If you died and came back as a person or thing, what do you think it would be?
A well-loved dog with a stay at home alpha human and a family that loves me, walks me and feeds me well. In other words, I would come back as one of my dogs.
What do you dislike most about your appearance?
Where to begin? Trying to be healthier in my attitude about this. But my weight (exacerbated by lymphedema) is getting me down lately. And it would be nice to have my breast back.
Where would you like to live?
Somewhere where there is no winter.
What is your most treasured possession?
If you agree with me that the dogs are family members and not possessions, then I guess that would be my raven ring.
What do you regard as the lowest depth of misery?
Being 38 years old and learning that your liver is riddled with tumours and you don't have long to live. Needing morphine to control the pain for months. Having your heart ache on behalf of those who love you, especially your kids.
And life really is pretty good when you climb out of those depths.
What do you most value in your friends?
Loyalty, love and and humour.
What are your favorite names?
Sacha
Daniel
Katya
What is it that you most dislike?
People who think they have already learned all there is to know. And cancer. I don't like cancer either.
What is your greatest regret?
Not maintaining friendships with some people who were very important to me.
How would you like to die?
Painlessly and after having lived a long life.
What is your motto?
Be good.
Thursday, December 10, 2009
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."
Thursday, December 03, 2009
hello again
I'm back.
All is well here, I just used up all my writing mojo in November writing a novel (more on that experience in a future post).
Then I took a few days off to hang out with a wonderful friend and, well not write for a few days,
And while I was gone from the blog November 24th (the anniversary of my diagnosis of metastatic breast cancer) and December 2nd (the anniversary of the night I found the first lump) came and went. I noted both events in passing, took the time to breathe deeply and be grateful, and then got on with my day.
It's been four years since I found the lump. It's been three since the cancer spread to my liver. And it's been two and a half years since my first clean scan.
I had an appointment with my oncologist yesterday. I had nothing to tell him. He said, "Shall we keep dragging you in here every few months just to say 'hi'?"
I readily agreed.
I have chemo next week. They've been building a new treatment centre for what seems like years. I have often jokingly pointed in the direction of the new building and said, "They're building that for me."
Yesterday, I discovered that the new building is open and the chemo room has been moved. No more listening to the sounds of construction during treatment. No more listening to the intimate details of the constitutional issues of the patient beside me. There will be a little more light and a little more room and hopefully, a little less noise.
I'm kind of excited.
And yes, that is somewhat ironic. I have lived long enough to be excited about getting chemo in the new building.
Sunday, November 29, 2009
Thursday, November 12, 2009
15 movies that stick with you
Rules: Don't take too long to think about it. Fifteen movies you've seen that will always stick with you. First fifteen you can recall in no more than fifteen minutes.
You can participate in the comments or leave a link to your own blog.
1. Gallipoli
2. Fast Times at Ridgemont High
3. An Officer an A Gentleman
4. El Norte
5. The Killing Fields
6. Swimming to Cambodia
7. The Princess Bride
8. Grease
9. Priscilla Queen of the Desert
10. The Breakfast Club
11. Rachel Getting Married
12. History of the World Part 1
13. The Producers (the original version)
14. The Thomas Crowne Affair
15. Mamma Mia
Wednesday, November 11, 2009
my husband's chest
You don't need to tell me how lucky I am.
I have a roof over my head, great medical care and I'm surrounded by people who love me.
And don't think I forget how very lucky I am to be alive at all. Why did I get to go into remission? Why me? I am indeed very fortunate.
But there are times when I do feel sad that I will never put this cancer behind me. I feel the toll ongoing treatment takes on my body and my emotional well being.
So last night I stood in my kitchen, with my head on my husband's chest (we say we were built for each other. My head lands flat on his chest and tucks under his chin). He put his arms around me and we just stood there, breathing together.
He didn't need to say anything. He understood my frustration. Only a few hours before I was finallly feeling sharp and healthy and energized. And then, after chemo, I stood in his arms, feeling sick and more than a little shaky.
He didn't remind me how lucky I am.
But I know it.
Monday, November 09, 2009
aware of the irony
Life is funny.
This morning was perfect weather for a bike ride. The sun was out and the temperature climbed to 17C (that's 62.6 in American). It was my first time on the bike in more than a week - since before the plague toppled my family, like a series of dominoes.
It was a fun ride, and I didn't even mind the big hill I have to climb on my way to the hospital. I arrived twenty minutes after I set out, a little sweaty and with my heart pumping. As I locked up and headed into the cancer centre, I noted with pleasure that I hadn't been coughing.
"It feels good to be healthy."
I very nearly said it out loud.
I was suddenly struck by the absurdity of my situation. Here I was, going to get my bloodwork done the day before chemo and thinking about how healthy I am.
Three years ago, at almost exactly this time of year, I learned that my cancer had become metastatic. I don't think I could have imagined this day, when I'd be riding my bike up Smythe Rd. and thinking about how healthy I am.
So, as I was saying at the beginning of this post - life really is pretty funny.
Cross-posted to Mothers With Cancer.
Thursday, November 05, 2009
first one, then the other
My older son went back to school this morning. I did a little happy dance in the hall after he left. It's not that I mind having him around but the kid has to go back out into the world some time, you know?
And then of course, my six year old woke up with a sore throat. He really doesn't seem too sick to me (he had the first part of the H1N1 shot last week) but these days, I prefer to err on the side of caution (we are relieved that there is no coughing, as D. has asthma and things can get scary pretty quickly).
We've been hanging out in our pajamas on the couch. I don't know if this will help me reach my deadlines (or my NaNoWriMo goal) but it's pretty sweet.
Monday, November 02, 2009
things i've learned in the last 7 days about h1n1 (and other things)
My older son and I were both sick last week and are bouncing back rather nicely. The experience taught me a few things, though:
1- The illness varies in its intensity. We both ended up with fairly mild cases.
2- My doctor is extremely efficient and her office is very well organized. This ended up making a very big difference for us.
3- Tamiflu, if administered within the first 48 hours of the onset of symptoms, can greatly alleviate those symptoms.
4- Oral Tamiflu can make you feel very, very queasy.
5- You don't always get a fever when you have the illness.
6- If you have any of the symptoms, you should assume you have the illness.
7- You will not get tested for H1N1 unless you land in the hospital.
8- Even if you think you've had swine flu, you should still get the vaccine, unless it was confirmed with a test.
9- The hysteria around this is getting to be a little overwhelming. Remember: Most folks who get H1N1 do not get seriously ill.
10- If you are having trouble breathing, you should go your hospital's emergency room.
11- If you have been running a fever for more than 48 hours, you should see your doctor.
12- Judging by the line-ups in Ottawa, there are a lot of people who live here who fall into high risk groups.
13- My six year old knows how to come through in the crunch. He stood in line for 5 and a half hours. He was patient and good humoured the whole time (my spouse was with him). And then he got a needle at the end. The only thing he asked (at regular intervals) was if he could go to St. Hubert when they were done.
Even though it was well past his bed time, T. took him there when they were finished (I forgot to ask him if he had beer with his chicken). And since St-Hubert now has nut free desserts, he topped off the meal with a brownie and ice cream.
And then we bought him a new game for his DS.
14- If you leave me a link saying that the vaccine is poisonous or that I am a dupe of the pharmaceutical industry, I will not be impressed. Chemotherapy is poison, too and it has saved my life. There really is such a thing as a "necessary evil."
I won't add my rant about how this pandemic is being mis-managed by all levels of government because I wouldn't be able to stop.
I will share Rick Mercer's rant with you, though.
Thursday, October 29, 2009
Wednesday, October 28, 2009
how cool is this?
Yesterday morning, I got a call from Oresta. She told me that she had read my article in the Centretown Buzz and wanted to reach out to me.
Even though I love her store and spa (I asked for gift certificates for Christmas last year), I was not on her mailing list and had not received the letter that I posted above.
It's hard to read, so here is the text, in full:
OCTOBER is BREAST CANCER AWARENESS MONTH
Pinkwasher: (pink’-wah-sher) noun. A company that pur-
ports to care about breast cancer by promoting a pink
ribboned product, but manufactures products that are
linked to the disease.
Dear clients,
ORESTA organic skin care confectionery is committed to providing organic spa
treatments and to supporting companies that manufacture truly pure and organic
products. We believe in beauty without compromising your health.
We have been touched by cancer in our families and with our clientele - as
cancer survivors and undergoing cancer therapy. The prevailing comment of clients
who have come in for a spa treatment while undergoing therapy was how nurturing a
visit to ORESTA organic skin care confectionery was for them.
We have wanted to help the cause but have struggled with a way to do this.
Do we donate a % of sales? a % of services? Do we fundraise? For which organiza-
tion or foundation? In the end, what feels right for us, is doing what we do best:
pampering.
If you, a friend or loved one is undergoing cancer therapy and would enjoy an
organic facial treatment, please contact us. We are committed to treating one
woman per week to a complimentary ORESTA treatment.
Oresta was calling to offer me a facial (I am going on Friday) but I offered to blog about this offer. She asked me to clarify that she and her staff will be offering this service to women undergoing treatment throughout the year - not just during October.
I am impressed and touched beyong words. Have any of you ever heard of anyone else doing this?
I told my spouse that, by coincidence, I had written in journal that morning that I would really like a facial. He said, "Tomorrow, could you write that you would really like a home renovation?"
Tuesday, October 27, 2009
chemotherapy and the H1N1 vaccine
As someone in ongoing chemotherapy, I have a compromised immune system. This puts me at increased risk for contracting H1N1.
I am among the priority groups established by the City of Ottawa, as is my family, and were it not for the hours long lineups (several centres closed the lineups by late afternoon), I would have had my shot yesterday.
I did call the oncologist yesterday to ask about interactions between Neupogen (the drug I take after chemo to boost my white blood cell count and fight infection). When I didn't hear back immediately I checked with the cancer centre receptionist who, told me (after checking with someone) that I should go ahead and get the shot.
Today, the nurse who works with my oncologist called and told me to wait.
The reasoning goes as follows:
Chemotherapy suppresses the immune system.
The flu shot is meant to boost it.
Having the H1N1 shot (or any other flu vaccine) too close to chemotherapy lessens the effectiveness of the shot.
Those of us getting chemo are instructed to wait to the end of the chemo cycle, get our bloodwork done (to ensure that our counts are high enough) and then get the shot the day before the next round of chemo.
This means that I will be waiting until November 10 for my H1N1 vaccine.
And washing my hands. A lot.
Friday, October 23, 2009
beautiful night
My face hurts from smiling and my heart is so full it could burst.
And the bookstore sold out the books.
Thursday, October 22, 2009
launching
I'm off to Toronto today to celebrate my book! If you're in town, come see me at the Toronto Women's Bookstore.
We'll have a little nosh, a little drink, I'll read from the book...I think it will be a nice evening.
Meanwhile, here's a link to a blog called "Incredible Women," where I am honoured to say that I am being featured today.
Wednesday, October 21, 2009
milestone reviewed
I am featured on a blog called "Women at Forty" today.
When I was aked to submit a post, I thought it would be appropriate to re-visit a post I wrote on the eve of my fortieth birthday.
I'm looking forward to writing my fiftieth birthday post. Only eight more years and countless clean scans to go.
Tuesday, October 20, 2009
de-bunking the pink
"Three years ago, I saw a story on the news while I was at the gym. An investigative feature on the breast cancer awareness contributions that various corporations pledged during Breast Cancer Awareness Month found that most of these promotions led to increased sales and windfall profits that dwarfed the piddling donations that the extra sales generated. Until that moment, I was gung-ho about buying products marked with pink ribbons."
And so begins the best article I have ever read on the subject of the pink-washing of October (and not just because the author says you should all go out and buy my book). Suzanne Reisman hits all the bases in this piece and does it with eloquence and a sense of humour.
If you have ever struggled to understand why some of us object to pinxploitation (I just made that word up), your questions will be answered.
Monday, October 19, 2009
advice (with the benefit of hindsight)
It's on the front page of this week's issue, and begins like this:
On December 1st, 2005, I found a lump in my breast, as I was getting undressed. One month later, I was diagnosed with breast cancer. I was 38 years old, with two young kids and a very hectic life. I felt completely blind-sided.
Almost four years later, and with the benefit of hindsight, I share some advice for others who find themselves in my situation.
As I looked back on the last few years, the following key points best summarize my advice:
Bring someone with you to appointments, especially in the beginning.
Be your own advocate.
Be nice to the admin staff and nurses.
Don’t compare yourself to anyone else.
Let others help you.
Never give up hope.
The entire article is online, so you can read it for yourself.
Let me know what you think. And if you've been there, please don't hesitate to share some of your hard-earned experience.
Thursday, October 15, 2009
will you be there?
I have been washing my hands lots and lots so that this overdue celebration can happen.
Also, I have been getting lots of interesting comments and messages in answer to my post on internet community. It's not too late to jump into the discussion.
Wednesday, October 14, 2009
a relative accomplishment
When I came to the big hill just before the hospital, I passed a man riding on the sidewalk. "it's pretty steep," he said, as I edged past.
"It is," I laughed. I admit that I was feeling pretty smug.
Then he took the wind out of my sails. "At 85 years old, it keeps getting a little harder."
When we reached the top of the hill, we had to stop at the lights. He kept chatting, while I had to gulp for air before I could respond.
When the lights turned green, he sailed past me, seemingly fully recovered from the climb.
Maybe I need more air in my tires. Yeah, that's it. Or maybe I need to tackle that hill more often.
Tuesday, October 13, 2009
around the table and around the world
Boy, am I dopey today.
We had our Thanksgiving dinner last night - turkey, mashed potatoes and stuffing (probably the best I have ever had) smothered in gravy. A beautiful salad with a basil and feta dressing. Lots of wine. And Guinness chocolate cake, pumpkin pie, whipped cream, ice cream and chocolate sauce for dessert (I don't think anybody actually had all of those things).
And a truly lovely group of people.
It was perfect.
Today, I am trying to make notes for a presentation I am giving on Thursday. I need to talk about my transformation from individual cancer patient to a member of a vibrant and supportive community.
I had lots of thoughts about this on the week end, when I really didn't have time to write them down. Today, my brain seems to have been replaced with mashed potatoes and gravy (Mmm. Leftovers).
It's an interesting question, though. My online community (which consists of folks I have met in real life and others I probably will only ever know online) has been a key source of information and support over the years.
So, help me out here. What role does your online community play in your life? How did you come to build these virtual relationships? Does the internet help sustain relationships with friends?
I'm not asking you to do my work for me (really, I swear). I'm just curious how you react to the words "network" and "community" and how they apply to your online life.
Wednesday, October 07, 2009
nothing ventured...
I have decided that I won't be doing NaBloPoMo this year.
My heart just isn't in it. This is in part because two of my NaBlo compadres have died. It just won't be the same without Sara and Emily. I miss their voices so much and I just don't feel like blogging every day without them at my virtual side.
But November can be a hard month for me and I still need something to distract and consume me.
I also need motivation to return to the scary (for me) world of fiction writing. I got so much done during my online writing course last year but have done nothing since submitting my outline for a novel, as my final assignment on December 31.
A few weeks ago Rachael suggested to Zoom that she try NaNoWriMo. And that got me thinking. If structure is what I need and my inner critic is my worst enemy then what better solution than to crank out 50,000 words in 30 days?
They don't even have to be good words (what matters with Nano is quantity over quality).
And before I know it, November will be over and I will have a whole bunch of words on paper.
Sounds like fun, right? Right?
S. is joining me, as part of the NaNo Young Writers' Program. I'm very pleased.
Tuesday, October 06, 2009
random book
I had to go back to the same Chapters three days later (I had left my glasses in the store). I couldn't help going back to visit my book. There were only two copies left! They had sold one! I took a couple of steps away and then went back to pull a copy out so that the title page faced towards the front.
My heart still belongs to independent book stores, though. They are owned by booklovers, have knowledgeable staff and are the most supportive of writers. If you can buy my book through your local independent, I strongly encourage it. And if your local bookstore carries my book, let me know. I'll put their logo and a link in my sidebar.
I am quoted in a recent BlogHer article by web teacher Virginia DeBolt. Her post, "Self-Promote Your Book Using The Internet" has some really interesting ideas. I had never thought of doing a book trailer, for example. Of course, I still need to write content for the book's web site.
I also want to remind those of you in Toronto that the Not Done Yet launch will take place at the Toronto Women's Bookstore (73 Harbord, near Spadina) on October 22 from 7-9pm.
Thursday, October 01, 2009
really random
Wednesday, September 30, 2009
"what's wrong with breast cancer awareness month?"
Since 1985 October has been celebrated as breast cancer awareness month, often symbolized by pink ribbons and the color pink. It is interesting to note that the awareness month was started by the drug company AstraZeneca (which manufactures several breast cancer drugs) and the pink ribbon originated from cosmetics giant Estée Lauder.
Simply put, I think a lot of breast cancer awareness month is big scam. To quote Maija's article quoting me (is this as po-mo as it gets?):
"I really resent big corporations making a profit - while donating only a tiny percentage to breast cancer research - on some disposable item that has been made under questionable environmental conditions by workers who are paid less than a living wage."
Want to do something to raise breast cancer awareness? Make a donation to an organization doing good work. Advocate for changes in environmental laws. Encourage young people to be aware of changes in their bodies. Do something nice for someone who has been affected by the disease.
Wednesday, September 23, 2009
k. and the colossal colon
On Friday evening, my friend K. will be arriving from the Netherlands for a long-anticipated visit. I haven't seen her since she flew to London to hook up with S. and me in the spring of 2008. I can hardly wait! Two more sleeps!
"What happened was, a giant 40-foot replica of a human colon came to Miami Beach. Really. It's an educational exhibit called the Colossal Colon, and it was on a nationwide tour to promote awareness of colo-rectal cancer. The idea is, you crawl through the Colossal Colon, and you encounter various educational items in there, such as polyps, cancer and hemorrhoids the size of regulation volleyballs, and you go, ''Whoa, I better find out if I contain any of these things,'' and you get a colonoscopy.
If you are as a professional humor writer, and there is a giant colon within a 200-mile radius, you are legally obligated to go see it. So I went to Miami Beach and crawled through the Colossal Colon. I wrote a column about it, making tasteless colon jokes. But I also urged everyone to get a colonoscopy. I even, when I emerged from the Colossal Colon, signed a pledge stating that I would get one.
But I didn't get one. I was a fraud, a hypocrite, a liar. I was practically a member of Congress."
It's called, "A Journey Into My Colon -- And Yours" and it made me laugh out loud in several places. Go read it.
Monday, September 21, 2009
talking "not done yet."
tired
Should we have washed the dogs before we cleaned the carpets?What if my oncologist ordered a thoracic CT scan so soon after my last abdominal one because they heard something during my last exam (and not just because I hadn't had one in a long time)?Was the other movie The Truth About Cats and Dogs? (I looked it up. His name is Ben Chaplin and it he was the actor in both movies).Was I sent for two CT scans two weeks apart because of poor planning (or poor communicaiton) or is there something ugly growing on my lungs?If the hat is too small, should I give it to someone else or rip it out and start over?
Friday, September 18, 2009
random. out of necessity
"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.Any ideas, readers?Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."