time passes

Much Needed Cancer Dialog Launched from Voices of Survivors Foundation

Talking about cancer can be difficult in the best of circumstances. Try living with extensive metastatic disease.

If that sentence alone conjures up images of hospitals and IV's think again. Today the Voices of Survivors Foundation launched a new initiative -- called "Conversations" -- that explores ALL aspects of cancer survivorship, including dying.

In the first segment, VOS executive director Lynn Lane talks with 37-year old Alli Ward, who has metastatic ovarian cancer that has spread throughout her body, including the brain. The interview will knock your socks off. Ward is authentic, funny and genuine as she talks about having to move back home, the loss of independence and having to ask her parents for rides since she can no longer drive. You'll feel that this incredible woman is a long-time friend. She teaches us all to look at the person, not the disease.

If you're not familiar with The Voices of Survivors Foundation, go to http://www.voicesofsurvivors.com. The nonprofit organization is the brainchild of Lynn Lane, a native Texas who was living in New York when he was diagnosed with prostate cancer at 41. After his treatment the former documentary film maker started filming survivors he'd met online when he was researching his own illness. Once the resulting clips were posted the incredible responses led him to devote his efforts to documenting survivorship -- in all forms -- on a full-time basis.

He is well known and widely respected in cancer circles and his work brings a fresh and much needed dimension to cancer survivorship.

Watch the video at: http://bit.ly/uPBsw and send a beautiful thought to Alli Ward.

Blessings,

Jody

oh oh...

"CT scan radiation may cause cancers"

but on the other hand

"Study: Coffee and tea may lower diabetes risk"

in other news

My children are still very beautiful.

(photos: Mary Anne Folckomer Register)

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.

not imaginary

It's a running joke in my house, "Mama's talking to her imaginary friends." They're the people I've met online over the last few years, through blogging and various social networks. Of course they are very real people and when bad things happen to them, I do feel it keenly.


S., though, was someone I met in person - at the Conference for Younger Women Affected by Breast Cancer in early 2009 - and with whom I continued to connect online. We first connected because we both had metastatic breast cancer but soon realized that we had much more than the cancer in common - a progressive outlook, quirky gifted children and we both chose to expressive ourselves in creative ways. Unlike me, though, S. was a bona fide artist who used fabric as her medium.


S. was about my age. She had been diagnosed at Stage 0 but the cancer seemed to have quickly metastasized (was it just very aggressive or had something been missed? This was one of the things we discussed over dinner on the evening we met). We ended up spending all of our free time together, during that long week end in Atlanta - every coffee break, meal and evening. We even grabbed lunch together before grabbing our shuttle to the airport.


We stayed in touch after we got home, exchanging the occasional email and through the Care Pages that S. set up to share news with family and friends. She wrote to me about her latest art project (which integrated images of cancer cells), her daily life and a wonderful trip that her family took to Costa Rica. She also shared her frustration with the fact that no treatments seemed to slow the progression of her cancer.


Last week, I received a notice that S.'s Care Page had been updated. I logged in and found a message from her husband: saying S. had had moved from treatment to hospice care. Yesterday, he contacted us to say that this remarkable woman had passed away in her sleep.


I've run out of words to describe my sadness and the grief I feel on behalf of her family. Another child has lost her mother. It's all so wrong.


Over the week end, Zoom remarked that having cancer brings a lot of people into your life but takes a lot of them out, too. And, the truth is, I would do nothing differently, even knowing I would face loss and be forced to confront the possibility of my own death. The people who have come into my life - online and off- since my cancer diagnosis have improved my life immeasurably. I wouldn't trade that for anything.


But, right now, my heart is aching.

Hahah stupid dumb breast cancer I got two pieces of me back, sucka!

Cookies for the hospital staff and shoes for me!

The surgery was a success! Ohhhhhh yeah. I have soft toobs (tissue boobs), I am so so happy. Drugged and in pain but satisfied. I came into the hospital with some badass wedges with lots of sparkle and try full of Italian cookies for the staff Yes  I used bribery even brought another tray for the ICU staff. OPPS did however forget my posse in the waiting room where they waited for 10 hours. They all know where the cookies are. 

Back to the toobies, I have the bestest plastic surgeon on the planet and his side kick amazaboobs. They did a great job and can't wait to show my breasties when they heal. The doctors took two. Swollen lymph nodes which were benign, bam! The entire staff is wonderful, I Mean really wonderful. They are smart, sarcastic and attending to my every whim which can be a little crazy. 

Thanks so much for all your love, support tweets, FB and Instagram comments. I can very drugged up  and trying to respond when I can. 

I just. Have to say this... Hahahahaahahahahahahaha cancer I for two pieces of me back! Sucker!! My tiara is shined and boa is fluffed but for now it's nap time!