SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA S
and in case you didn't hear, SARCOMA.
Jillian died last week from SARCOMA. Twenty-three, beautiful, loving, full of life. She loved theatre and choir.
Sarcoma attacks the young. It is a disease of the young. It is childhood cancer. It is young adult cancer... and some older people get it, too. SARCOMA steals our children. Chris's daughter. My daughter.
SARCOMA is different.
SARCOMA is under-researched. SARCOMA is under-funded.
Jillian died eight weeks before her wedding.
SARCOMA is unfair.
Maura died just shy of 23. She, too, was plucked from her full life. And from mine. And her sisters' and her dad's and everyone's life that knew her and loved her. Plucked. Excised. Resected.
Tomorrow I will celebrate the beginning of breast cancer awareness month by attending the book signing for Promise Me. I am so grateful to have Maura remembered in this book. I am so happy to have SARCOMA mentioned.
And, knowing that my other two daughters and myself have more of a chance of getting breast cancer than SARCOMA, I am thankful for the great strides that have been made to cure breast cancer.
And Joel and I will be part of the Susan G. Komen 5k Walk for the Cure on Saturday.
I wish it were that simple.
To walk and find a cure.
I wish Maura had had breast cancer instead of SARCOMA. Then, when the adriamicin didn't work, there would have been lots of other approved, vetted drugs available to continue the fight.
Most people don't even know what SARCOMA is.
And we will walk in the hope that fewer women will die or suffer from breast cancer. And that the strides in breast cancer treatment will somehow be beneficial to SARCOMA treatment too.
Thursday, September 30, 2010
Sunday, September 26, 2010
Make It Last
I've been slowly reading Promise Me.
Couldn't read anything but the "Maura vignette" for over a week after getting the book. Then, I dove into the rest this weekend.
Today, I biked home after church, stopping at a nifty tea room for a cup of soothing something-or-other and a chance to read some more of the book. I love the whole idea of biking somewhere I can read while sipping tea. It's all part of our new hip urban lifestyle. All I need are some organic cotton clothes and I'll be set. But, hey, I was wearing yoga pants, so that ought to count for something.
I don't know how I got through the chapter entitled "Make It Last", to tell you the truth. I had to stop every minute or so to wipe tears from my eyes and blow my nose on a napkin. I have no idea what the people next to me thought, but they kept peering at me over their laptops. Sniveling isn't part of the whole hip urban lifestyle.
The chapter details the time following Suzy's reoccurence and metastasis of her breast cancer until her death. So much of it rang so true for me, and I saw myself in Nancy and in her mom. I saw Joel in Suzy's husband and father. And I saw so much of Danielle and Lydia in Nancy.
I share similar experiences: Helping Maura to bathe when she was too weak; helping her cross the street; waiting with her time and again at MD Anderson; sometimes not talking; sometimes words pouring out so fast they tumbled onto each other. WAtching and listening as Maura allowed herself to be heartbroken for dreams unrealized.
But here is the quote that leaves me sobbing right now as well as at the Tea House:
Couldn't read anything but the "Maura vignette" for over a week after getting the book. Then, I dove into the rest this weekend.
Today, I biked home after church, stopping at a nifty tea room for a cup of soothing something-or-other and a chance to read some more of the book. I love the whole idea of biking somewhere I can read while sipping tea. It's all part of our new hip urban lifestyle. All I need are some organic cotton clothes and I'll be set. But, hey, I was wearing yoga pants, so that ought to count for something.
I don't know how I got through the chapter entitled "Make It Last", to tell you the truth. I had to stop every minute or so to wipe tears from my eyes and blow my nose on a napkin. I have no idea what the people next to me thought, but they kept peering at me over their laptops. Sniveling isn't part of the whole hip urban lifestyle.
The chapter details the time following Suzy's reoccurence and metastasis of her breast cancer until her death. So much of it rang so true for me, and I saw myself in Nancy and in her mom. I saw Joel in Suzy's husband and father. And I saw so much of Danielle and Lydia in Nancy.
I share similar experiences: Helping Maura to bathe when she was too weak; helping her cross the street; waiting with her time and again at MD Anderson; sometimes not talking; sometimes words pouring out so fast they tumbled onto each other. WAtching and listening as Maura allowed herself to be heartbroken for dreams unrealized.
But here is the quote that leaves me sobbing right now as well as at the Tea House:
"Because this is the place you come to when someone you love is slowly dying: You're desperate for it to be over, and even more desperate to make it last."
Tuesday, September 21, 2010
Promise Me: Maura de Souza, the smile that just won't stop
Promise Me: Maura de Souza, the smile that just won't stop:
Here is a link about Maura on the Promise Me blog. I'm excited that I'll finally get to meet Nancy Brinker on Friday, October 1 when she comes to the Champions Barnes & Noble in Spring for a book signing. I'm bringing the copy I have. I hope they don't mind that I bought it somewhere else.
Here is a link about Maura on the Promise Me blog. I'm excited that I'll finally get to meet Nancy Brinker on Friday, October 1 when she comes to the Champions Barnes & Noble in Spring for a book signing. I'm bringing the copy I have. I hope they don't mind that I bought it somewhere else.
Wednesday, September 15, 2010
Promise Me
Yesterday, I forgot to tell you the title of the book:
Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer
Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer
Tuesday, September 14, 2010
Book (surprise!)
Nancy Brinker is the sister of Susan G. Komen and the founder of the organization that bears her sister's name. Thousands of women (and not a few men) owe their lives to this phenomenal woman, who created a revolution in the world of breast cancer awareness, prevention, and treatment.
Her memoir was released today, September 14, 2010. It is the story of sisterhood, of growing up in more innocent times, of love and marriage, of Susan's cancer, of Nancy's promise to her dying sister, and of the birth and growth of an organization that is synonymous with hope.
In between and separate from the primary story the reader finds vignettes about breast cancer survivors, some who are no longer surviving, breast cancer warriors, breast cancer advocates, breast cancer champions, breast cancer heroes, breast cancer history makers, breast cancer, breast cancer, breast cancer. Of course it's breast cancer...it's Susan G. Komen.
But, miraculously, there is one vignette, just one, that mentions another cancer--sarcoma.
It is a vignette about Maura.
Yes, a slender piece of Maura's story is found in a book authored by the founder of the Susan G. Komen foundation. Yes, sarcoma gets a mention in a book by a breast cancer icon. In the world of rare cancers, anything that promotes awareness is a plus.
Her message is simple, albeit difficult for me to embrace: Underfunding of research for rare cancers is a dreary fact. But a national movement to end all cancer has to begin somewhere, and awareness, funding, research, and innovation in one area ultimately benefit all.
And my dear, sweet, Maura, who lives eternally in Heaven, is made just a little bit more immortal here on earth as well--because I believe in the eternity of the written word.
So here is my shameless plug for the book and for my friend's online bookstore: Kathy is a single mother of three and is currently fighting sarcoma. Please buy the book through her Amazon affiliate: http://www.greatbooksforu.com/
Her memoir was released today, September 14, 2010. It is the story of sisterhood, of growing up in more innocent times, of love and marriage, of Susan's cancer, of Nancy's promise to her dying sister, and of the birth and growth of an organization that is synonymous with hope.
In between and separate from the primary story the reader finds vignettes about breast cancer survivors, some who are no longer surviving, breast cancer warriors, breast cancer advocates, breast cancer champions, breast cancer heroes, breast cancer history makers, breast cancer, breast cancer, breast cancer. Of course it's breast cancer...it's Susan G. Komen.
But, miraculously, there is one vignette, just one, that mentions another cancer--sarcoma.
It is a vignette about Maura.
Yes, a slender piece of Maura's story is found in a book authored by the founder of the Susan G. Komen foundation. Yes, sarcoma gets a mention in a book by a breast cancer icon. In the world of rare cancers, anything that promotes awareness is a plus.
Her message is simple, albeit difficult for me to embrace: Underfunding of research for rare cancers is a dreary fact. But a national movement to end all cancer has to begin somewhere, and awareness, funding, research, and innovation in one area ultimately benefit all.
And my dear, sweet, Maura, who lives eternally in Heaven, is made just a little bit more immortal here on earth as well--because I believe in the eternity of the written word.
So here is my shameless plug for the book and for my friend's online bookstore: Kathy is a single mother of three and is currently fighting sarcoma. Please buy the book through her Amazon affiliate: http://www.greatbooksforu.com/
Saturday, September 11, 2010
Earrings
Someone complimented me for my funky, blue-green, fish earrings.
I blurted out, "Yeah, that's how I know that I'm getting better--because I started to wear my earrings again."
What?
I had not consciously thought that, but as soon as I said it, I knew it was true.
I have a great collection of cheap, gaudy earrings. The bigger and cheaper, the better. I am proud that most items in my collection cost less than $2.00. I hang them on a piece of embroidery plastic that I fixed up and placed on my wall like a piece of art.
My collection is nothing compared to Maura's. She was the Earring Queen. I was merely her Handmaiden. After she died, I'm not quite sure what I did with her earrings. Certain ones she had willed to certain people. I know I gave some away, but I can't really remember doing it. It's amazing how much I still don't remember from the months after her death.
But I know that a few pairs belonging to Maura are now on my earring board.
I don't remember when I stopped wearing them. I think it was during her illness. I lost interest. And afterwards, well, there was no joy in wearing them. Wearing flashy earrings for me is like wearing high heels for Elsa(red ones) and Michelle. They are fun, pretty, and make me feel good.
But I didn't feel good.
Earrings bring me small joys, but I didn't want to be joyful.
Because being joyful means I've forgotten Maura.
Duh, of course I know that is not true. But feelings are feelings. Sometimes it's just better to let them be rather than try to explain or understand them. They seem to work themselves out most of the time.. .
In any case, I've started wearing them again. Golden grass discs from Brazil. Red hot chili peppers from Italy. Dangling dyed fish scales. Beads and bark and seeds. Feathers and wind-catchers. Wires and colored stones and bamboo.
I blurted out, "Yeah, that's how I know that I'm getting better--because I started to wear my earrings again."
What?
I had not consciously thought that, but as soon as I said it, I knew it was true.
I have a great collection of cheap, gaudy earrings. The bigger and cheaper, the better. I am proud that most items in my collection cost less than $2.00. I hang them on a piece of embroidery plastic that I fixed up and placed on my wall like a piece of art.
My collection is nothing compared to Maura's. She was the Earring Queen. I was merely her Handmaiden. After she died, I'm not quite sure what I did with her earrings. Certain ones she had willed to certain people. I know I gave some away, but I can't really remember doing it. It's amazing how much I still don't remember from the months after her death.
But I know that a few pairs belonging to Maura are now on my earring board.
I don't remember when I stopped wearing them. I think it was during her illness. I lost interest. And afterwards, well, there was no joy in wearing them. Wearing flashy earrings for me is like wearing high heels for Elsa(red ones) and Michelle. They are fun, pretty, and make me feel good.
But I didn't feel good.
Earrings bring me small joys, but I didn't want to be joyful.
Because being joyful means I've forgotten Maura.
Duh, of course I know that is not true. But feelings are feelings. Sometimes it's just better to let them be rather than try to explain or understand them. They seem to work themselves out most of the time.. .
In any case, I've started wearing them again. Golden grass discs from Brazil. Red hot chili peppers from Italy. Dangling dyed fish scales. Beads and bark and seeds. Feathers and wind-catchers. Wires and colored stones and bamboo.
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