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.

Poked and prodded

Yesterday I had a dermatology annual skin check. This is a real conversation:

"How long has this mole been two colored?"

"I have no idea, its on my butt and I can't see it."

We did get a snicker out of that one and she laughed at herself. But the mole is no longer as it has been scraped off. And its a little sore and its on my butt. So this will be a fun day.

I also was a little daring. I had a wart appear on my left arm. My left lymphedema arm. My left lymphedema arm which cannot have needles or pressure or cutting or anything. I thought I was going to be stuck with the damn thing for life.

But the dermatology NP thought that since burning it off wouldn't be a problem because its  surface thing. I thought another second or two and said fine, go for it.

Right now my arm feels fine. I may wear a sleeve for a day or two just in case. I usually do not wear a compression sleeve except when working out or flying.

Then for more fun and games, I am going back to the doctor this morning for another look at my toe to see if I need more antibiotics or not. The first thing they do is squish the part that hurts. Ow.

3 weeks later

If you'll recall, I was hesitant to have my port put on my right side because of my truncal lymphedema. I figured that if I'm not supposed to cut my right arm, or even have blood pressure taken on the side, then I probably shouldn't have surgery either. After all, I have very little lymphedema in my right arm and lots in my back and chest.

Well, I have even more now. And it's really uncomfortable. And the site of the surgery also became infected.

I was put on antibiotics for a week. At the end of the week, I saw only a tiny bit of improvement in the wound and the antibiotics had made me sick. And they made me weak enough that, as I was recovering from the antibiotics, I contracted a brutal gastrointestinal virus.

It's been five weeks since surgery and I still don't feel like myself.

And tomorrow, I have treatment.

But at least I'm writing again and riding my bike and going for walks. And the wound, is finally healing.

I think I need to put all of this in a letter to the hospital. An open letter.

Until then, I'm back. And happy to be here.

my new rack

Warning: This post may contain too much information for some readers.


I have not worn a prosthesis for more than two years. Lymphedema and then scarring from radiation made the experience of wearing it excruciating. The last time I tried to wear it, I was on a date with my spouse in Florida. After an hour, I was in tears, it hurt so much.

Out it came and I haven't looked back.

At least not much.

I find that I'm pretty comfortable without a prosthesis. Sometimes I dress to camouflage and others I just don't care. And most of the time, I don't think about it at all.

Lately, though, I've wanted the chance to blend in a little more, to not have to lead with my cancer when I meet people. And although I have some great tops that work with my asymmetrical body, (from Rhea Belle, of course) I do get tired of the limited options open to me (it's hard enough finding funky clothes in larger sizes).

So, while feeling slightly guilty about giving into societal notions of beauty (in hiding my asymmetry, am I implying that I think there is something wrong with it?), I set out to visit Kelly's Mastectomy Boutique.

The entire operation took all of ten minutes ("Oh look! Boobs!" I exclaimed as I tried on prosthesis and bra) and cost several hundreds of dollars (recuperable, thanks to the government and my insurance plan. I wonder though, why do we need a referral from a doctor? Does anyone get a prosthesis for fun? What would they do with it?). I brought it home, stuck it in my closet and didn't wear it for almost a week.

Yesterday, I decided it was time for the prosthetic equivalent of a test drive. I was meeting Sassymonkey for pints and knitting on a sunny patio. It seemed like a low stakes endeavour, in that if I arrived with my boobs pointing in different directions, Sassymonkey was likely to be unperturbed. It was also a good opportunity to put the boob through it's paces, as I would be biking, knitting, eating, sitting in the warm sun and engaging in a social encounter.

My new fake boob is squishier in back and is supposed to be lighter - better for both my uneven chest wall and lymphedema. I wore it under a t-shirt with a picture on it (much harder to wear with an uneven chest) and one that is slightly snugger than I have been wearing lately. I noticed immediately that my waist, gone for ages, seemed to reappear. I also noticed that my posture seemed to improve.

I ran into someone I knew on my way to the pub. She said, "You look different. Have you done something to your hair?"

And after Sassymonkey and I had been sitting for a while, I pointed out my newly symmetrical rack to her. "That's what's different!" she exclaimed.

"You'd tell me if I were unbalanced right?" She assure me that she would (I felt unbalanced, I'm so unused to having this weird mound on the right side of my chest).

All in all, I declare the outing a success. The thing felt odd but there was no pain. I even forgot I was wearing it for a while.

When Sassymonkey and I parted we hugged goodbye (I later repeated this experience with T. Hugging feels very odd, like we are squishing a big pillow between us) and she noted, "You're still balanced."

I said I was glad but that I was going to take it off when I got home. "It's like breaking in a pair of shoes, you know?"

She said that she did.

As I type this, the stand-in for my right boob is nestled in it's box in my closet. I am toying with taking it out for a spin again this evening.

And one last thing: there needs to be more support and encouragement of women who create clothing for the post-mastectomy body. Also, it would be great if the bigger clothing companies would come across, by supporting the work of women like Jacqueline and modifying their own designs. I can't be the only woman who has had a mastectomy, does not love prosthesis and cannot/would not choose surgical reconstruction.

i have excuses (no, the dog didn't eat my blog posts)

I'm back.

I didn't intend to keep Will and Billy and the boys at the top of the page for so long. I keep meaning to post but I never seem to get around to it. I wanted to assure those who have expressed concern that all is well.

It's time to re-commit to regular updates and to begin, please let me explain my absence:

The last round of chemo was kind of hard. I'm not sure if I was hit with an additional bug but I experienced some really gruesome side effects (I'll let you use your imagination), especially last Friday, when I should have started to feel better.

The truth is, that I am taking longer to recover every round, these days. My oncologist has suggested that I skip a treatment this summer. I plan on taking July off so I can go to BlogHer (Did I mention that I got in? I was so disappointed when I came back from Florida to find that the conference had sold out. I can't really afford this but when I learned that there was a space for me, I hesitated for only a couple of hours before taking out the credit card. After all, my book will be there, I want to be there with it!)

I'm going to ask my doc if I can take August off, as well. It can't hurt to ask, right?

When I have felt well, I have been running around a fair bit. I have had a bunch of appointments (among other things, I have returned to physio and lymphatic massage, after taking a long break), errands and other commitments.

Last week end, for example, my spouse and I took D. to the Cumberland Heritage and Power Festival. There were so many cool things there, a steam powered rock crusher, water-powered toys and little tiny steam trains on which you could ride. I wish I had brought my camera. The photos would have made a great blog post.

I blame Twitter. I find sometimes that I have begun to compose my thoughts in 140 characters. For example, I tweeted about my brain MRI results but I see that I didn't write about them here (I think this is a common problem. I remember Average Jane citing Twitter as an excuse for not blogging). They were great results, by the way with absolutely nothing suspicious in evidence, or as I reported to my spouse, "There is nothing there."

I have had BSG to watch knitting to do.

Promoting my book, while fun, has left me kind of uninspired. But I am getting past that. How many more times can I say, "Please buy my book?" or "Don't forget about the Toronto launch on June 11?"

The truth is I haven't been doing much writing of any kind lately. And I miss it. I just seem to have fallen out of the habit.

But the only way to make something a habit is to do it.

So here I am.

taking care of my body in 2009: part 5

Alternative title: "a mixed bag"

Alternative title: "doritos do not make a healthy lunch"

Alternative title: "time to bring in some support"

As my first alternative title suggests, I have had some mixed success this month, in my quest to "treat my body as well as I treat my mind" in 2009.

Let's review, shall we?

1-Walk VIGOROUSLY for an average of one hour, five times per week (300 minutes a week).

I did very well on this front, meeting my goal and exceeding it. I am especially pleased, given that I had such a terrible cold for a while. And I am very proud of the fact that I went for a long walk every day that I was at the Conference for Women Living With Advanced Breast Cancer (near Philly). I walked after checking in at the hotel, at the end of a long day on Saturday and organized a late check-out so that I could walk again before going to the airport.

2-Go to yoga once every week.

I went twice. I can definitely do better. I did have semi-valid excuses (conflicts and a head cold that made it impossible for me to bend down) but really, I can do better.

I'm going Wednesday morning, OK? I'll report back afterwards.

3. Do either 10 minutes (at least) of strength training or yoga with the Wii Fit or abdominal exercises every day (chemo recovery days excluded).

I used the Wii Fit once. I did the abdominal exercises three times (every day when I was away and then not again). Yeah, I caught a cold and then had chemo. But there were lots of days I could have worked at it and didn't.

I think I will lower the bar to 5-10 minutes and try again.

And that's the good news.

4-Cook dinner at least once a week.
5-Cut down on refined sugar.
6-Eat seven servings of fruit and veggies a day.
7- Take my vitamin D and calcium supplements daily.

When it comes to input, things have been a little out of control.

The dinners I "cooked" were as instant as possible.

I have eaten more sugar and fried stuff in the last month than I have in a very long time (Easter, Passover, travelling and my son's birthday provided the excuse). And the volume of food has vastly exceeded my needs.

The whole fruit and veggie thing has been extremely haphazard. I stopped keeping track but I'm probably averaging three servings a day (if I am incredibly generous in my calculation).

I can't remember the last time I took the lid off a supplement.

Clearly, it's time for some more drastic action.

I'm not talking about buying into the beauty myth or wanting to look like Posh Beckham. I just need to take better care of myself.

My lymphedema is worse and has started to be painful.

The bigger pants I bought are becoming tight.

I have aches and pains in my joints.

I feel sluggish and run down.

Now, I know not all of this is attributable to diet (early menopause and chemo are playing a role) but I do have control over what goes into my mouth.

I keep attending workshops on diet and nutrition, as it relates to cancer (went to another excellent one at the conference I have yet to write about) and I have years of Weight Watchers and reading obsessively about diets under my belt.

Going back to Weight Watchers might help (I tried doing the online last year and without a person to hold me to account, it was a bust) but we really can't afford it right now and the idea of dragging my ass to meetings is extremely unappealing.

So, my friend C. (who is feeling much as I have been) and I have hatched a plan. We are going to track what we eat, weigh in weekly and report in to each other. And then we'll have a little mini-meeting about what things are working for us and why other things might not be. My goals for this month aren't changing (no specific weight loss goal and I won't count points) but I will keep careful track of my promises to myself.

This kind of accountability has worked for me when it comes to my writing goals so it can only help on the health front. When I was meeting with my coach in January (without whom I would never have finished the book, started writing fiction or done so many other things that made me feel happy and purposeful in 2008), I set the following goals for the year:

I want to fit back into my pre-diagnosis pants (two sizes smaller than my current ones).

I want to have a strong core.

I want to feel fit and strong.

I think these goals are realistic and achievable. I just need to keep my eye on the prize.

Going to go throw out the empty Doritos bag and weigh myself with the Wii Fit now.

do you have lymphedema?

Do live in the Ottawa area? Do you have secondary lymphedema (as a result of any kind of cancer)?

University of Ottawa professor Roanne Thomas and her team are is running a pilot of a study and are looking for participants:

I've lived with truncal lymphedema since my mastectomy in 2006. Very little has been written on this subject and the advice I've found online or been given in workshops all has to do with arm lymphedema. My arm is fine but my chest and back can become very uncomfortable, to the point that it can be outright painful to wear a prosthesis. And the measures you take to prevent lymphedema in the arm can make truncal lymphedema worse.

I would love to have the chance to share my experience, learn from others and gain new insight into living with lymphedema. Unfortunately, the scheduled dates don't work for me, so instead, I'm reaching out to you.

Would you benefit from a program to support people with cancer-related lymphedema? Would you like to help create one? Contact Liz at epigott@uottawa.ca.

Hopefully this pilot will be tremendously successful and the researchers will get funding to run a national lymphedema support program. I'd like that. Meanwhile, if you take part, please keep me posted.

living with it

I have just come back from an echo-cardiogram appointment (I have regular echos to make sure that Herceptin isn't damaging my heart) or rather what I thought was an echo appointment. It had previouslybeen scheduled for Thursday, February 26 (when I was travelling to Dallas for the Conference for Young Women Affected By Breast Cancer) and I'd had to reschedule. I had entered the appointment (I use Google Calendar) for Friday, March 6 at 3pm. It turns out the appointment is for Tuesday, March 10th, at 3pm.

Since I was told about the appointment over the phone, I have no idea where along the channel of communication the mistake was made - as it came out of the caller's mouth, or as it went through my (increasingly sieve-like) brain. I guess it doesn't really matter, though (and next time, I will call to confirm).

I did find that it made me feel a lot better to get out of the house (both physically and mentally). Can you remind me of that next chemo cycle, please? I don't know why I am still figuring these things out.

I am still all aglow from the conference (even if I have been too tired to write about it). It was a truly supportive, joyful atmosphere, despite the shared circumstances of the women in attendance. I had been hoping to learn (and I did). I had been hoping to get a chance to talk about my book (and I did). I had been hoping to meet a few nice people (which I really did). I did not anticipate how very inspired and hopeful I would feel on my return. I am so grateful that I was able to attend.

There were some excellent sessions on practical and medical issues (I mentioned the session on nutrition in yesterday's post and I will write a post on Monday about the medical stuff) but also workshops and speakers that addressed what it means to live with cancer.

Here are some of the comments that resonated with me:

From Advanced Breast Cancer: Living With Uncertainty, a workshop led by Mary K. Hughes, a nurse who helps cancer patients cope with anxiety and depression-

• Instead of focusing exclusively on what we have lost, it is important to "find new meaning in what you can do."

• There is a difference between depression and the grief we all experience as women living with metastasis.

• People often tell us we are brave. We don't generally feel brave, just that we are doing what we need to do.

• It's hard to explain to people that we will never be "done with treatment."

• "Coping is temporary. Adapting is permanent." This is so true.

• Talking about our cancer "takes the power out of it. It's like deflating a balloon."

From Happiness In A Storm: Embracing Life Through And After Cancer, a keynote address by Dr. Wendy Harpham, MD, FACP and multiple cancer survivor, speaking about her own experiences:

• When she was first diagnosed with cancer, she had a busy practice and two kids. Cancer felt "like a storm had descended." I can really relate to that metaphor.

• A "healthy survivor" is one who gets good care and lives as fully as possible. Good health is a "wholeness of body and mind and not dependent on biology." Dr. Harpham advised us to "make your life the best it can be, whatever the circumstances."

• Minor discomforts (hello lymphedema!) can be an obstacle to happiness. She called it "the rubber band syndrome."

• Unpleasant emotions can be "the signal of a problem or the response to a problem." They can sometimes be used "in healing ways."

• "Anger and grief have a purpose."

• "It matters less what you feel than what you do with what you feel."

• "Live until you die." I know that sounds obvious but it is easy to lose sight of the living when all you can see is the illness or the ways in which your life has changed.

• Strike a balance between hope and acceptance - "hopeful acceptance."

• "Setting the stage for hope is a choice."

• "A prognosis is not a prediction."

• "Little problems have become trivial. The ordinary has become marvelous." I have written about revelling in the mundane.

• "Even the hard stuff reminds me that I am alive."

• On communicating with kids - "open the lines of communication and tell the truth. The greatest gift we can give our kids is not to protect them from the world but to give them the skills to deal with what life deals them."

As someone who lives with metastatic breast cancer, I will be in treatment for the rest of my life. I am also in remission and live a full and happy life, despite the challenges I face. It was so inspiring to be around people who really understand this.

The women pictured above were among the nicest I met this week end (the two at the back are from Boston - the same two women I was too shy to approach at the Chicago Airport!) the two in pink are from Orange County and I met them at the cocktail party on the first evening. And then it turned out they were all friends. They enveloped me in their little circle and it made my experience that much better.

3 weeks later

If you'll recall, I was hesitant to have my port put on my right side because of my truncal lymphedema. I figured that if I'm not supposed to cut my right arm, or even have blood pressure taken on the side, then I probably shouldn't have surgery either. After all, I have very little lymphedema in my right arm and lots in my back and chest.

Well, I have even more now. And it's really uncomfortable. And the site of the surgery also became infected.

I was put on antibiotics for a week. At the end of the week, I saw only a tiny bit of improvement in the wound and the antibiotics had made me sick. And they made me weak enough that, as I was recovering from the antibiotics, I contracted a brutal gastrointestinal virus.

It's been five weeks since surgery and I still don't feel like myself.

And tomorrow, I have treatment.

But at least I'm writing again and riding my bike and going for walks. And the wound, is finally healing.

I think I need to put all of this in a letter to the hospital. An open letter.

Until then, I'm back. And happy to be here.

my new rack

Warning: This post may contain too much information for some readers.


I have not worn a prosthesis for more than two years. Lymphedema and then scarring from radiation made the experience of wearing it excruciating. The last time I tried to wear it, I was on a date with my spouse in Florida. After an hour, I was in tears, it hurt so much.

Out it came and I haven't looked back.

At least not much.

I find that I'm pretty comfortable without a prosthesis. Sometimes I dress to camouflage and others I just don't care. And most of the time, I don't think about it at all.

Lately, though, I've wanted the chance to blend in a little more, to not have to lead with my cancer when I meet people. And although I have some great tops that work with my asymmetrical body, (from Rhea Belle, of course) I do get tired of the limited options open to me (it's hard enough finding funky clothes in larger sizes).

So, while feeling slightly guilty about giving into societal notions of beauty (in hiding my asymmetry, am I implying that I think there is something wrong with it?), I set out to visit Kelly's Mastectomy Boutique.

The entire operation took all of ten minutes ("Oh look! Boobs!" I exclaimed as I tried on prosthesis and bra) and cost several hundreds of dollars (recuperable, thanks to the government and my insurance plan. I wonder though, why do we need a referral from a doctor? Does anyone get a prosthesis for fun? What would they do with it?). I brought it home, stuck it in my closet and didn't wear it for almost a week.

Yesterday, I decided it was time for the prosthetic equivalent of a test drive. I was meeting Sassymonkey for pints and knitting on a sunny patio. It seemed like a low stakes endeavour, in that if I arrived with my boobs pointing in different directions, Sassymonkey was likely to be unperturbed. It was also a good opportunity to put the boob through it's paces, as I would be biking, knitting, eating, sitting in the warm sun and engaging in a social encounter.

My new fake boob is squishier in back and is supposed to be lighter - better for both my uneven chest wall and lymphedema. I wore it under a t-shirt with a picture on it (much harder to wear with an uneven chest) and one that is slightly snugger than I have been wearing lately. I noticed immediately that my waist, gone for ages, seemed to reappear. I also noticed that my posture seemed to improve.

I ran into someone I knew on my way to the pub. She said, "You look different. Have you done something to your hair?"

And after Sassymonkey and I had been sitting for a while, I pointed out my newly symmetrical rack to her. "That's what's different!" she exclaimed.

"You'd tell me if I were unbalanced right?" She assure me that she would (I felt unbalanced, I'm so unused to having this weird mound on the right side of my chest).

All in all, I declare the outing a success. The thing felt odd but there was no pain. I even forgot I was wearing it for a while.

When Sassymonkey and I parted we hugged goodbye (I later repeated this experience with T. Hugging feels very odd, like we are squishing a big pillow between us) and she noted, "You're still balanced."

I said I was glad but that I was going to take it off when I got home. "It's like breaking in a pair of shoes, you know?"

She said that she did.

As I type this, the stand-in for my right boob is nestled in it's box in my closet. I am toying with taking it out for a spin again this evening.

And one last thing: there needs to be more support and encouragement of women who create clothing for the post-mastectomy body. Also, it would be great if the bigger clothing companies would come across, by supporting the work of women like Jacqueline and modifying their own designs. I can't be the only woman who has had a mastectomy, does not love prosthesis and cannot/would not choose surgical reconstruction.

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.

do you have lymphedema?

Do live in the Ottawa area? Do you have secondary lymphedema (as a result of any kind of cancer)?

University of Ottawa professor Roanne Thomas and her team are is running a pilot of a study and are looking for participants:

I've lived with truncal lymphedema since my mastectomy in 2006. Very little has been written on this subject and the advice I've found online or been given in workshops all has to do with arm lymphedema. My arm is fine but my chest and back can become very uncomfortable, to the point that it can be outright painful to wear a prosthesis. And the measures you take to prevent lymphedema in the arm can make truncal lymphedema worse.

I would love to have the chance to share my experience, learn from others and gain new insight into living with lymphedema. Unfortunately, the scheduled dates don't work for me, so instead, I'm reaching out to you.

Would you benefit from a program to support people with cancer-related lymphedema? Would you like to help create one? Contact Liz at epigott@uottawa.ca.

Hopefully this pilot will be tremendously successful and the researchers will get funding to run a national lymphedema support program. I'd like that. Meanwhile, if you take part, please keep me posted.

A very unsettling conversation

Yesterday, as part of my day to myself, I dragged my sorry a$$ to the gym. As part of my getting ready ritual, I pulled on my lymphedema sleeve. An older woman entered the previously empty locker room and asked me if it was a lymphedema sleeve. Often I just say it is a compression sleeve so as not to enter the 'what is lymphedema' conversation and get into my medical history with a virtual stranger.

She looked somewhat on edge. I told her it was a lymphedema sleeve. She said she had been diagnosed with breast cancer 28 years ago when she had a lumpectomy and radiation. Then she had a recurrence 7 years ago (I am pretty sure it was 7, it might have been 4) when she had a mastectomy and more treatment.

Three weeks ago she started to get swelling around her implant and around to her back. She had had an MRI and a CT scan to make sure it was not more cancer. It was lymphedema. I believe she said her doctor called it 'sectional lymphedema'.

She wondered how she could have gotten lymphedema at such a late date for no reason. I did remind her you can get it from a little cut or injury. She replied but it wasn't on her arm and just her torso on that side. I did suggest she call and get some treatment asap as it is important to get lymphedema under control as soon as possible. She said she was going to call her doctor back later in the day.

Then we both went our separate ways.

Later I started thinking.

First of all a recurrence over 20 years after the first diagnosis. Crap.

Second of all, lymphedema 28 years after the first diagnosis and 7 years after the second surgery. Double crap.

You start to get comfortable with a cancer diagnosis. And then whammy. You find out about late recurrences and it all becomes a little too close to home. Triple Crap.

That brief conversation gave me a lot of food for thought and was very unsettling.

Poked and prodded

Yesterday I had a dermatology annual skin check. This is a real conversation:

"How long has this mole been two colored?"

"I have no idea, its on my butt and I can't see it."

We did get a snicker out of that one and she laughed at herself. But the mole is no longer as it has been scraped off. And its a little sore and its on my butt. So this will be a fun day.

I also was a little daring. I had a wart appear on my left arm. My left lymphedema arm. My left lymphedema arm which cannot have needles or pressure or cutting or anything. I thought I was going to be stuck with the damn thing for life.

But the dermatology NP thought that since burning it off wouldn't be a problem because its  surface thing. I thought another second or two and said fine, go for it.

Right now my arm feels fine. I may wear a sleeve for a day or two just in case. I usually do not wear a compression sleeve except when working out or flying.

Then for more fun and games, I am going back to the doctor this morning for another look at my toe to see if I need more antibiotics or not. The first thing they do is squish the part that hurts. Ow.

living with it

I have just come back from an echo-cardiogram appointment (I have regular echos to make sure that Herceptin isn't damaging my heart) or rather what I thought was an echo appointment. It had previouslybeen scheduled for Thursday, February 26 (when I was travelling to Dallas for the Conference for Young Women Affected By Breast Cancer) and I'd had to reschedule. I had entered the appointment (I use Google Calendar) for Friday, March 6 at 3pm. It turns out the appointment is for Tuesday, March 10th, at 3pm.

Since I was told about the appointment over the phone, I have no idea where along the channel of communication the mistake was made - as it came out of the caller's mouth, or as it went through my (increasingly sieve-like) brain. I guess it doesn't really matter, though (and next time, I will call to confirm).

I did find that it made me feel a lot better to get out of the house (both physically and mentally). Can you remind me of that next chemo cycle, please? I don't know why I am still figuring these things out.

I am still all aglow from the conference (even if I have been too tired to write about it). It was a truly supportive, joyful atmosphere, despite the shared circumstances of the women in attendance. I had been hoping to learn (and I did). I had been hoping to get a chance to talk about my book (and I did). I had been hoping to meet a few nice people (which I really did). I did not anticipate how very inspired and hopeful I would feel on my return. I am so grateful that I was able to attend.

There were some excellent sessions on practical and medical issues (I mentioned the session on nutrition in yesterday's post and I will write a post on Monday about the medical stuff) but also workshops and speakers that addressed what it means to live with cancer.

Here are some of the comments that resonated with me:

From Advanced Breast Cancer: Living With Uncertainty, a workshop led by Mary K. Hughes, a nurse who helps cancer patients cope with anxiety and depression-

• Instead of focusing exclusively on what we have lost, it is important to "find new meaning in what you can do."

• There is a difference between depression and the grief we all experience as women living with metastasis.

• People often tell us we are brave. We don't generally feel brave, just that we are doing what we need to do.

• It's hard to explain to people that we will never be "done with treatment."

• "Coping is temporary. Adapting is permanent." This is so true.

• Talking about our cancer "takes the power out of it. It's like deflating a balloon."

From Happiness In A Storm: Embracing Life Through And After Cancer, a keynote address by Dr. Wendy Harpham, MD, FACP and multiple cancer survivor, speaking about her own experiences:

• When she was first diagnosed with cancer, she had a busy practice and two kids. Cancer felt "like a storm had descended." I can really relate to that metaphor.

• A "healthy survivor" is one who gets good care and lives as fully as possible. Good health is a "wholeness of body and mind and not dependent on biology." Dr. Harpham advised us to "make your life the best it can be, whatever the circumstances."

• Minor discomforts (hello lymphedema!) can be an obstacle to happiness. She called it "the rubber band syndrome."

• Unpleasant emotions can be "the signal of a problem or the response to a problem." They can sometimes be used "in healing ways."

• "Anger and grief have a purpose."

• "It matters less what you feel than what you do with what you feel."

• "Live until you die." I know that sounds obvious but it is easy to lose sight of the living when all you can see is the illness or the ways in which your life has changed.

• Strike a balance between hope and acceptance - "hopeful acceptance."

• "Setting the stage for hope is a choice."

• "A prognosis is not a prediction."

• "Little problems have become trivial. The ordinary has become marvelous." I have written about revelling in the mundane.

• "Even the hard stuff reminds me that I am alive."

• On communicating with kids - "open the lines of communication and tell the truth. The greatest gift we can give our kids is not to protect them from the world but to give them the skills to deal with what life deals them."

As someone who lives with metastatic breast cancer, I will be in treatment for the rest of my life. I am also in remission and live a full and happy life, despite the challenges I face. It was so inspiring to be around people who really understand this.

The women pictured above were among the nicest I met this week end (the two at the back are from Boston - the same two women I was too shy to approach at the Chicago Airport!) the two in pink are from Orange County and I met them at the cocktail party on the first evening. And then it turned out they were all friends. They enveloped me in their little circle and it made my experience that much better.

taking care of my body in 2009: part 5

Alternative title: "a mixed bag"

Alternative title: "doritos do not make a healthy lunch"

Alternative title: "time to bring in some support"

As my first alternative title suggests, I have had some mixed success this month, in my quest to "treat my body as well as I treat my mind" in 2009.

Let's review, shall we?

1-Walk VIGOROUSLY for an average of one hour, five times per week (300 minutes a week).

I did very well on this front, meeting my goal and exceeding it. I am especially pleased, given that I had such a terrible cold for a while. And I am very proud of the fact that I went for a long walk every day that I was at the Conference for Women Living With Advanced Breast Cancer (near Philly). I walked after checking in at the hotel, at the end of a long day on Saturday and organized a late check-out so that I could walk again before going to the airport.

2-Go to yoga once every week.

I went twice. I can definitely do better. I did have semi-valid excuses (conflicts and a head cold that made it impossible for me to bend down) but really, I can do better.

I'm going Wednesday morning, OK? I'll report back afterwards.

3. Do either 10 minutes (at least) of strength training or yoga with the Wii Fit or abdominal exercises every day (chemo recovery days excluded).

I used the Wii Fit once. I did the abdominal exercises three times (every day when I was away and then not again). Yeah, I caught a cold and then had chemo. But there were lots of days I could have worked at it and didn't.

I think I will lower the bar to 5-10 minutes and try again.

And that's the good news.

4-Cook dinner at least once a week.
5-Cut down on refined sugar.
6-Eat seven servings of fruit and veggies a day.
7- Take my vitamin D and calcium supplements daily.

When it comes to input, things have been a little out of control.

The dinners I "cooked" were as instant as possible.

I have eaten more sugar and fried stuff in the last month than I have in a very long time (Easter, Passover, travelling and my son's birthday provided the excuse). And the volume of food has vastly exceeded my needs.

The whole fruit and veggie thing has been extremely haphazard. I stopped keeping track but I'm probably averaging three servings a day (if I am incredibly generous in my calculation).

I can't remember the last time I took the lid off a supplement.

Clearly, it's time for some more drastic action.

I'm not talking about buying into the beauty myth or wanting to look like Posh Beckham. I just need to take better care of myself.

My lymphedema is worse and has started to be painful.

The bigger pants I bought are becoming tight.

I have aches and pains in my joints.

I feel sluggish and run down.

Now, I know not all of this is attributable to diet (early menopause and chemo are playing a role) but I do have control over what goes into my mouth.

I keep attending workshops on diet and nutrition, as it relates to cancer (went to another excellent one at the conference I have yet to write about) and I have years of Weight Watchers and reading obsessively about diets under my belt.

Going back to Weight Watchers might help (I tried doing the online last year and without a person to hold me to account, it was a bust) but we really can't afford it right now and the idea of dragging my ass to meetings is extremely unappealing.

So, my friend C. (who is feeling much as I have been) and I have hatched a plan. We are going to track what we eat, weigh in weekly and report in to each other. And then we'll have a little mini-meeting about what things are working for us and why other things might not be. My goals for this month aren't changing (no specific weight loss goal and I won't count points) but I will keep careful track of my promises to myself.

This kind of accountability has worked for me when it comes to my writing goals so it can only help on the health front. When I was meeting with my coach in January (without whom I would never have finished the book, started writing fiction or done so many other things that made me feel happy and purposeful in 2008), I set the following goals for the year:

I want to fit back into my pre-diagnosis pants (two sizes smaller than my current ones).

I want to have a strong core.

I want to feel fit and strong.

I think these goals are realistic and achievable. I just need to keep my eye on the prize.

Going to go throw out the empty Doritos bag and weigh myself with the Wii Fit now.

i have excuses (no, the dog didn't eat my blog posts)

I'm back.

I didn't intend to keep Will and Billy and the boys at the top of the page for so long. I keep meaning to post but I never seem to get around to it. I wanted to assure those who have expressed concern that all is well.

It's time to re-commit to regular updates and to begin, please let me explain my absence:

The last round of chemo was kind of hard. I'm not sure if I was hit with an additional bug but I experienced some really gruesome side effects (I'll let you use your imagination), especially last Friday, when I should have started to feel better.

The truth is, that I am taking longer to recover every round, these days. My oncologist has suggested that I skip a treatment this summer. I plan on taking July off so I can go to BlogHer (Did I mention that I got in? I was so disappointed when I came back from Florida to find that the conference had sold out. I can't really afford this but when I learned that there was a space for me, I hesitated for only a couple of hours before taking out the credit card. After all, my book will be there, I want to be there with it!)

I'm going to ask my doc if I can take August off, as well. It can't hurt to ask, right?

When I have felt well, I have been running around a fair bit. I have had a bunch of appointments (among other things, I have returned to physio and lymphatic massage, after taking a long break), errands and other commitments.

Last week end, for example, my spouse and I took D. to the Cumberland Heritage and Power Festival. There were so many cool things there, a steam powered rock crusher, water-powered toys and little tiny steam trains on which you could ride. I wish I had brought my camera. The photos would have made a great blog post.

I blame Twitter. I find sometimes that I have begun to compose my thoughts in 140 characters. For example, I tweeted about my brain MRI results but I see that I didn't write about them here (I think this is a common problem. I remember Average Jane citing Twitter as an excuse for not blogging). They were great results, by the way with absolutely nothing suspicious in evidence, or as I reported to my spouse, "There is nothing there."

I have had BSG to watch knitting to do.

Promoting my book, while fun, has left me kind of uninspired. But I am getting past that. How many more times can I say, "Please buy my book?" or "Don't forget about the Toronto launch on June 11?"

The truth is I haven't been doing much writing of any kind lately. And I miss it. I just seem to have fallen out of the habit.

But the only way to make something a habit is to do it.

So here I am.