a bright light lost

Smart, funny, creative, talented Sara has passed away.

I only knew her as an online presence (although we did once spend more than an hour on the phone together) but I am grieving tonight and for all the people that love her.

I am told that Sara loved red wine and good tequila so if you partake of either of these tonight (and even if you don't) please raise a glass in her honour.

I am going to put on the lava earrings I bought from her (they are my favourites).

Damn. Cancer really sucks.

author not pictured

Some time between when we pointed the car towards Florida and made our way back (we had a glorious time, by the way. Few photos this year but it's still this beautiful in Siesta Key), my book was published.

The dogs were less than impressed but the human members of my family are all very proud and I am so pleased to actually have a copy to hold in my hands. You can get yours from Women's Press or wait for details of the launches we are planning in Ottawa and Toronto.




And last night, S. won an Honourable Mention in the short story category (for 9-11 year olds) in the Awesome Authors contest, run by the Ottawa Public Library. His story, "The Man in the Photographs" was about how he never wants to seem as uncool as his father. "Pure fiction," he said at the awards ceremony.

photojourney

Ottawa, Ontario. March 12th. 10:30 am.


Scranton, PA. March 12, 4:15pm. S. is a huge fan of The Office. We made a detour for this photo.


Harrisburg, PA. March 12th, 6:30pm. T. checks GPS while the boys ham it up.


Port Wentworth, Georgia. March 13th, 10:45pm. He feel asleep with his arm around my neck.

what if?

"We have all the tools to eliminate mortality from Her2 positive breast cancers in the next 10 years."

-Dr. Eric Winer, Director, Breast Oncology Centre, Dana-Farber Cancer Institute (February 28, 2009, 9th Annual Conference For Young Women Affected By Breast Cancer).

Her2 is a protein. And it fuels cancer cells. Her2+ breast cancers are always very aggressive and, had I been diagnosed before Herceptin was widely available, I am sure that I would not be alive today. Now, a whole host of new drugs are being developed to attack this breast cancer that affects primarily younger women.

Dr. Winer's words are among the most hopeful that I have heard in a long time.

And then today, I heard a story on the CBC about a man who is being forced to choose between taking an oral chemotherapy drug for his brain cancer or feeding his kids. It's heart-breaking.

And, I can't help but wonder, what if, when the Herceptin stops working, neither my government or my insurance company will pay for the next course of treatment? What happens then?

Dr. Winer also noted that 30-40% of all women with breast cancer metastases will eventually have the cancer spread to the brain. He told us that Herceptin doesn't pass through the brain and suggested that all women with metastatic her2 positive breast cancers have brain scans done every 6 to 12 months. Guess what I am going to be talking to my oncologist about during my next appointment? (Although, vinorelbine, the chemo drug I'm taking is sometimes used to treat brain mets. That's reassuring).

I hope this is making at least a little bit of sense. I have a raging head cold and am feeling pretty muddled. My spouse was laughing at me this evening, reminding me that I am always very stoic about the big things (like, say, having a liver the size of a watermelon) but a garden variety head cold turns me into a whimpering puddle of goo.

I guess I am reminded that, generally speaking, I am very healthy these days. And that, in itself, is very hopeful.

This brings me to my second favourite quote from the conference:

"The best predictor of doing well is doing well."

-Dr. Winer.

Cross-posted to Mothers With Cancer.

unrelated

photo: J. Sussman

"It is one of the ironies of the creative life that while drama is part of what we make, it has almost no place in how we make it."

Julia Cameron
Walking In This World.

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.

small changes, small successes.

I had just experienced the first concrete encouraging sign in my journey of small changes.

I tend to spend the couple of days after chemo in pajamas. After spending all day pulling up my pjs, (the drawstring seems to have gone missing) it occurred to me that they might be getting too big. I pulled out a pair of pajamas that my parents had given me for Christmas that had been too tight to fit comfortably. I pulled them up easily and I'm wearing them now.

The thing is, this encouraged me to do something else that was healthy. As a pre-dinner snack, I had been considering toast or a granola bar. Instead, I had an orange.

I am inordinately pleased with these developments.

of freaks, friends, rebels, boobs and bras

Go see Jacqueline today. She shares an email exchange we had in December.

Jacqueline continues to innovate, create and dazzle (and I am planning to end up with a really good bra).

"Sometimes and often from loss grows a whisper, a roar, and song." J.L.S. Rebel1in8

taking care of my body in 2009: part 3

My one New Year's resolution this year was to start "treating my body as well as I've been treating my mind." However, I decided that the best way to go about making these changes stick was by taking very small steps.

You can read my review of January here.

Here's how I did with February's goals:

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

I fell short by almost 300 minutes (or almost a week's worth of walking) this month. However, given the fact that I got the flu after chemo and that I travelled and attended a conference, I am not being too hard on myself.

I am also mightily impressed that I took breaks from the conference to walk (doing loops around the little track in the back of my hotel) on the non-travel days that I was in Texas. My walks have also become more vigorous and I miss them on the days I don't get out.

One of the things I learned last week end is that the body of evidence that exercise helps prevent the recurrence of cancer continues to grow. And studies show that all you need (in terms of cancer prevention) is 180 minutes a week. I am doing that, easily.

2-Eat seven servings of fruit and veggies a day.

I am struggling with this one but continue to work at it.

Another thing I learned at the breast cancer conference is that the consumption of fruit and vegetables does not seem to be as effective in terms of cancer prevention as scientists first thought. However, they do help prevent heart disease and with weight control (and there is a link between obesity and cancer prevention).

3-Cook dinner at least once a week.

I am doing pretty well in this area. I am also pleased to find that cooking is becoming more intuitive and that I don't always have to rely on cookbooks to figure out what can work.

I would like to cook more vegetarian dishes that my kids will eat, though.

4-Go to yoga once every week.

I went twice in four weeks. One week I had the flu and then, this past Monday, I was just too exhausted after attending an intense conference all week end and then arriving home after 1:00 in the morning.

This month, I'll aim for four times, which will mean making up for the classes I miss when we're in Florida (we are going to visit my in-laws in Sarasota).

5-Cut down on refined sugar.

I caved a few times (less than a dozen) and generally, only when the treat was really worth it. And when I was really hungry in the airport, I ate two oatmeal rains cookies. I do feel better when I don't eat sugar so I am going to keep working on this one.

4- Take my vitamin D and calcium supplements daily.

I remembered to do this about half the time.

I think I need to keep my goals very modest this month, in order to entrench the steps I have already taken. Our vacation, while therapeutic in other ways (if the kids don't drive each other and us crazy on the drive), will not be conducive to entrenching new habits. This month, I pledge to:

1. 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'll start this one on Saturday.

And if I can get enough fruit and veggies and keep the junk food in the car to a minimum I will be happy.

While on the subject of nutrition, the Rowan Chlebowski, the oncologist who spoke about diet and nutrition at the conference said that the relationship between alcohol and breast cancer is a controversial one. And there seems to be no link at all between moderate alcohol consumption and recurrence. So I needn't worry about the occasional glass of wine.

Alcohol is, on the other hand, a source of empty calories and it increases the appetite. I generally try to save the booze for weekends and special occasions (which are admittedly fairly broadly defined) but with a vacation on the horizon, I think that in April I will look at cutting back in this area.

home

I arrived home from Dallas in the wee hours of this morning. I am exhausted but so glad I went. The 9th Annual Conference for Young Women Affected By Breast Cancer exceeded my expectations in every way.

I expect to be writing a lot about this later this week but I am so very tired and have chemo early tomorrow.

Meanwhile, here are some shots of folks gathered around for the group photo. Very many of us were hanging around above taking photos and I think we diminished the numbers a bit. There were 8oo women in attendance. Three hundred of us were on scholarship. It was incredible.