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.