Little Pink Houses of Hope beach retreat week (by Judy)

Instead of once again writing about the Little Pink Houses of Hope beach retreat week — since I already did that at This Post Was Brought to You By the Letter R — I’m going to give you a look into the week via my FaceBook posts. I won’t have the photos posted here, but you can get an idea of our days at Kure Beach by reading the posts.

The only thing I would say is that prior to the week, my only concern was that I had it so hyped up in my mind that there was no way it could have reached my expectations. My concern was needless; it not only reached, but it exceeded, my expectations. What a special week. I miss it, I miss all my LPHOH buddies from that week. A LOT.

May 15, 4:22 p.m.:

‎Live stronger. Laugh harder. Love deeper.
Little Pink Houses of Hope motto

May 16, 5:02 a.m.:

Yes, I’m up, way too early. I think I’m just utterly psyched for this week. I’ll try to go back to sleep, but not before I say: I could get used to this. 🙂

May 16, 8:53 a.m.:

‎I am changing, less and less asleep. Made of different stuff than when I began. ~ Brooke Fraser, “Shadowfeet”

May 16, 11:15 a.m.:

Two words: egg toss. 🙂

May 16, 8:33 p.m.:

Jeanine Patten-Coble and her husband Terry Coble rock. I’m just sayin’. ♥

May 16, 9:13 p.m.

Tonight I will dream of eggs that have names, children (and adults) running and playing, CatchPhrase (?), balconies, amazing volunteers, Melissa’s cool prayers, and beautiful, strong women and their loving, supportive men. It’s been a good day y’all, and we continue to be blessed. God’s grace is abundant here at Kure Beach, NC.

May 17, 7:38 a.m.

Kate’s Pancake House in Carolina Beach is AWESOME! They donated breakfasts for all of the families, YAY!

May 17, 8:03 a.m.

Energy Boy: Mama Mia? Me: Yes, EB? EB: I’m so thankful. Me: For what? EB: For everything. Me: Oh, that’s so nice, EB. *heart melts and bursts with pride*

May 17, 5:49 p.m.

Judy is right now enjoying a boat cruise with the group. Taking pictures now on my camera; those will be uploaded and posted when I get home. Still having a wonderful time, making great new friends, and loving life. 🙂

May 17, 8:55 p.m.

I am tired (but a good tired). I am grateful. I am nourished, body and soul. I am relaxed. I am loved. I am blessed.

May 18, 1:49 p.m.

Energy Boy is a natural at stand-up paddle-boarding. Me? Not so much (to put it mildly). But, I TRIED, and that’s the important thing.

May 18, 8:32 p.m.

I love the brightly colored houses here. EB says it’s like “being in a crayon box.” My favorite is lime green, EB’s is orange, and Absent Minded Professor doesn’t have a favorite.

May 18, 8:36 p.m.

Tonight was Date Night. All the couples got a free dinner at a wonderful seafood restaurant in Carolina Beach (big shout-out to Michael’s Seafood Restaurant) and the amazing volunteers watched the kids. Big Fun.

May 19, 3:08 a.m.

Restless. Steroids? The excitement of the week? My *ouch* dagnab shoulder that I hurt yesterday? Dunno, but will try to get back to sleep after I step outside onto the (unlocked) balcony and look at the sky. There is always time for that here.

May 19, 7:32 a.m.

Today we’re going to Fort Fisher State Park. A professional photographer will be there to take pictures of each family/couple, then we’ll have fun on the beach and then we’ll have a picnic there. More later. 🙂 [big shout-out here to Sara-Anne Photography. Absolutely beautiful photos, kick-butt photographer. Love her!]

May 19, 3:52 p.m.

Energy Boy went jetskiing today with Tim, Bobby, and Rayne. Thanks so much for taking him and taking such good care of him!

May 19, 9:08 p.m.

Another awesome day comes to an end. Tomorrow is the last day of the retreat then we head home on Sat. Boo — can’t I take all my new friends home with me? :). On the bright side, I’ll never forget this week and the kindness of so many people. Also, I will carry each retreat participant and volunteer in my heart forever. Love you all. ♥

May 20, 7:51 a.m.

Back at Kate’s Pancake House before the activities with the group. YUMMY!

May 20, 8:01 a.m.

Yesterday morning Energy Boy made up a song: “I’m a happy little kid . . . because I have a happy little life.” My heart melted. 🙂 & ♥

May 20, 4:03 p.m.

My new hat says, “Not all who wander are lost.” Phew!, that’s a good thing for me. 😉

May 20, 4:29 p.m.

This afternoon, Absent Minded Professor, Energy Boy and I went to the aquarium. Wonderful. Tonight we’ll have a grill-out with retreat friends (that’s participants and volunteers) and some kind of special send-off for those of us who are participants. *sigh* I’ll be sad to leave. It’s been SUCH a fantastic week.

May 20, 9:16 p.m.

God’s hand has been in this Little Pink Houses of Hope beach retreat week from start to finish. What a great week, what amazing friends we’ve made. We said our good-byes, but it’s not good-bye forever. It can’t be with people who have touched your heart and soul in an indescribable way. My heart is full-to-bursting; I thank the good Lord for this week and these wonderful people. ♥ ♥

May 21, 6:31 a.m.

Sad to leave such amazing peeps, but still happy. Happy to have been here for this incredible week, happy to have spent quality time with my family, happy to have meet such amazing, wonderful, life-long friends. Happy to have such beautiful memories and happy to be a part of the Little Pink family. Happy . . . and blessed beyond measure. Thank you, Little Pink.

May 21, 9:46 a.m.
‎

Every day holds the possibility of miracles. ~ church sign

May 21, 10:08 a.m.

Ahh, my stoic Norwegian side was out last night. Now I’m wistful and sad, yet so very uplifted by the week — if that makes any sense at all. *sigh* I miss all the LPHOH Kure Beach folks oodles and oodles.

May 21, 8:31 p.m.

We’re Home!
1. Home again, home again. 2. My church small group is AWESOME! We came home to new flowers in the flower beds, small ditches that AMP’s car had made filled in and covered with gravel, EB’s room cleaned, the living room cleaned . . . and I know I’m forgetting things. 3. And someone — don’t know yet who — has fixed our falling-apart bathtub. That could be my brother-in-law since he was talking about how he could do it if we were gone long enough. I’ll find out soon enough. 4. This is all amazing after an amazing trip. I feel extremely loved.

May 22, 9:18 a.m.

And we discovered that EB’s bed is new. His old one is outside waiting to be put in trash or whatever. I am . . . . OVERWHELMED. As Frank says, the blessings keep coming. Wow, just wow.

May 22, 3:40 p.m.
‎

1. I was so overwhelmed with emotion (in a good way) from this past week at Kure Beach and from what people did for us when we were gone that I got all verklempt during communion at church and tears were streaming down my cheeks. Good tears, tears of gratitude. Life is good, God is great. 2. I had something else, but it’s gone. Heh. Such is the life of a woman with Chemo Brain.

May 22, 6:08 p.m.

Judy needs to blog . . . . but is still processing . . . . .

May 24, 9:03 a.m.

I’m starting to blog about my week with Little Pink Houses of Hope. Words can never fully describe such an amazing week, but I’ll try to at least come close. 🙂

_________________________________________________________________________________________

That brings you a day-by-day (and usually more often) account of our trip. I still can’t completely describe how wonderful it was . . . but that gives you an idea. Lurved it, just LURVED it.

_________________________________________________________________________________________

Cross-posted to Just Enjoy Him.

The kids

I worry about my kids.  I worry a LOT about my kids.  How are they making it through this crazy time?  How do they deal with hearing my name listed among the sick that we pray for at church every Sunday?  How do they feel when they hear me say, “No, honey, Mama can’t” wrestle or swordfight or take them for a walk? 

Are they ok?

Are they going to be ok when they’re teenagers, or all grown up?  Will this time be a defining moment for them, something to point to in future therapy sessions?  Will they be ok?

But yesterday, my oldest brought home a drawing from school that made my heart sing.  They drew pictures of snow globes, and, out of anything in the world, he chose to draw himself playing with two friends.  He drew friends.

He didn’t draw the dark scary place that I was in.  He drew the happy, kid place that he was in.

And he’s going to be ok.

…

Today, he came home with simple homework:  write three words that describe who you are.  We waited to hear what words he’d choose, and, after his bath tonight, he told us:

Happy.  Nice.  and then he asked his Dad what word he’d use to describe him, curious what he would say.  Dad said, “curious.”  Widget smiled, and there the words were, all out in the open.  WhyMommy’s oldest boy had fulfilled her deepest hopes, all at the age of 6.  He is happy.  He is nice to others and his friends.  And he does ask “Why, Mommy?” just like I dreamed, well before he could talk.  They’re still the sweetest words, next to the last ones I hear every night, as I turn off his light and kiss his forehead as he goes to sleep:

“I love you too, Mommy.”

Originally posted at Toddler Planet, February 9, 2011

It Can Happen to You

My dog Sophie sat under the kitchen table for years, with great, unflagging optimism. I would marvel at her evergreen hopefulness, as she would lie belly-down on the hardwood floor, looking up with patient brown eyes at the underside of the table on which that night’s dinner lay. Years of evidence to the contrary, she would wait perfectly still for that magical moment when the pork chops would levitate from the table, hang in the air for a few seconds, then drop to the floor with a juicy thud. Sophie’s eyes said it all: “It could happen.”

Then one day, it did happen.

My mom had come to San Francisco and wanted to go shopping at Union Square. She put a pot roast in the oven, turned the heat to low, and said it would be fine for a couple hours. Long story short, we spent more time than planned downtown. When we got back to my flat on Cesar Chavez street, I ran up the stairs to try on my new shoes while Mom ran up to check on her pot roast, which by now had been roasting for six hours.

“I think it’ll be ok,” she said, placing her smoking, ruined dinner on the table. Sophie took her position underneath and waited.

As Mom muscled through the hard crust of what now looked like a hockey puck, the entire “roast” flew off the serving platter. Sophie sprang. In what seemed like a slow motion slam dunk, she caught the “roast” in her jaws before it even hit the floor.

Victory comes to dogs who wait. Not often, but it is a possibility.

Which, finally, leads me to a point. And that point is that you can go through a mastectomy, chemotherapy, radiation and reconstruction and still find love. I know because it happened to me.

I had a very supportive boyfriend through it all. He waited for two years for the glorious outcome of my reconstruction. But unlike Sophie’s prize pot roast, the outcome wasn’t so good, so he split. “What a dog,” my friends exclaimed. Not so. I got a lot out of that relationship, and it slowly and painfully led me to my current one.

I won’t detail all the bad Match.com dates that came between the two. That’s for another post. What I will detail is that during that time I waited with great hope and optimism for that one man who would see beyond my physical and emotional scars and see something else. Fear, sometimes. Resilience, maybe. Unflagging optimism, for sure.

That relentless optimism and a wholesome faith in my God, led me to my man. A list of adjectives cannot begin to describe his goodness, but I can’t resist: Bighearted, honest, compassionate, generous, patient, understanding, forgiving, funny, uncomplicated, complicated, deep, basic, true. We got engaged in Kauai on January 12. He just wags my tail.

For all you girls out there wondering how you’re gonna find love after cancer, remember this: It does happen. And it can happen to you.

Need Help Buying Lymphedema Sleeves?

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on.  If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

LympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here. 

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook. 

The colors of October

I’ve been talking a lot about pink this month on Toddler Planet.  After all is said and done, though, I’m still grateful for the pink and the efforts to eradicate breast cancer.  In this post, posted over there yesterday, I talk about learning to appreciate the spectrum of opportunities created by good people who want to help.

 The world seems to come alive in October, as the wind begins to blow, gently at first, teasing the leaves who haven’t heard that it’s time to change. Then, all at once, as if the dogs’ evening howl spreads the message across the miles, the green begins to fade and the trees begin their dance with colors. First the maples tinge with orange, then the pears gather yellow about their branches. Finally the young exotic dons its coat of firey red, and our morning drive to school becomes a chorus of “ooh”s and “aah”s as we compete to find the prettiest, the most breathtaking, tree of the day. My children and I delight in seeing the colors take hold, competing in their brillance, creating a Fall mosaic more beautiful than the finest earthly artists, and one that each tree could never create on its own.

When I was a child, I never knew this cacophany of color. I grew up in Mississippi in the 1970s, a time and a place where just as the trees never changed (except green to brown, while we were sleeping), the people were slow to change as well. I remember — and this is only my memory, I don’t speak for others — I remember things being so concrete then. There were things that were Right. And things that were Wrong. And we were taught to know the difference. Everything was so clear-cut back then. We knew what was expected of us, and we either obeyed or rebelled, as fit with our own black-and-white, right-or-wrong, something-we-do-or-something-we-would-never-do moral code. Even the trees knew their place. They all obeyed the rule of nature and dutifully kept their demure green coats on until the exact day that they were told to turn brown and drop their leaves. Were there shades of brown? Not that I saw. There were no shades of grey in my youth that I remember. The trees were green, and then they were brown, and then they were bare, if they were so careless as to not be born a pine tree, with her evergreen gown around her.

I remember clearly — so clearly — my mother collecting the most vivid leaves she could find each Fall and taping them to the kitchen windows, bringing us a little of the magic she remembered from her youth and teaching us that there was more to see than green and brown in the world. It was something she did every year, and we “ooh”ed and “aah”ed along with her. Although I’m not sure my little brother and I ever could really see the magic that she saw in them, we tried. I remember trying. Daddy would lift us up to the window as very little children, and we gazed and squinted and tried to see the beauty that she did in the tinges of color that peeked out among the brown.

It wasn’t until I went away to college, far in the north (and by that, I mean Southern Virginia), that I truly saw what she had been trying to teach us. There was more to the world than the choices of Green or Brown. There were colors I had never imagined, as the oranges and yellows and reds danced with the green and brown, every color in the rainbow (except blue and purple. My children would like to know why not blue.) dancing in the trees, fluttering in the leaves as they pirouetted to earth in ways that crinkly brown Southern leaves never did. I fell in love with the trees, and the “north” where differing opinions could co-exist among good people, and I exulted in it, spreading my wings on Sunday drives in an old red convertible with my yankee friends, until the last rivulets of yellow danced in the Shenendoahs, and we put on jackets against the chill, preparing for snow in the valley.

Perhaps it was my strict Southern upbringing, perhaps it is an inborn cry for justice (I feel it, and I see in my young sons, who protest when classmates don’t follow the rules, for the sake of the rules themselves, and who fall apart when their routine is disrupted by a half-day or an impending field trip), but I rarely see shades of grey in the world. I see Right and Wrong and Injustice and OMG What Has To Be Done NOW. I end up SPEAKING UP rather than coexisting, and I know that doesn’t make me an easy friend. But it’s who I am and what I do. What I want to say here, and I don’t really know how, is that I APPRECIATE the efforts of all the people and organizations in the world bringing attention to a color that has already gotten a lot of attention this month: pink. There are shades of goodness in pink and shades that worry me. I realize now that they can co-exist, and that we can appreciate and enjoy all the shades of pink without declaring them ALL GOOD or all worthless, and that each shade of pink makes a contribution to the Fall mosaic around us that is bringing awareness and action to breast cancers, and is fighting the good fight in the way that feels right to them.

Today, I thank all the people and all the organizations formed across the globe that support the fight against breast cancer, that raise awareness, that raise funds for research, and that raise the spirits of those who struggle with this disease, in their own bodies or in that of the friends and family who they love. NEVER DOUBT that what you do makes a difference. Indeed, it is the only thing that ever has. And without the research and attention paid since the 1970′s War on Cancer, I would not even be alive right now, able to talk about the Fall colors outside my window, and the Fall colors of pink that are blanketing our new world.

Thank you for that. I heartily support the rainbow of efforts being made on my behalf and all of us who suffer from the breast cancers, as well as those pathfinders who have gone before. Here is (I hope) my last October post on pink, with links to my favorite organizations making a difference through their words, their campaigns, their dollars. Thank you, and please talk about your favorites in the comments if you’d like.

The American Cancer Society supports research and awareness on all the cancers – even the rare ones. Donate directly or go check out their newest campaigns: Choose You tips for healthy living, and online e-greetings for someone you know celebrating More Birthdays. Oh, and I did check out their NFL partnership and talked to ACS leadership: all of the pink you see at the games is being auctioned off by the NFL, with 100% of the proceeds going to ACS.

The Inflammatory Breast Cancer Research Foundation conducts research and spreads awareness of the cancer that has attacked me twice. They do no fundraising campaigns and have no pink partnerships (and therefore use 100% of donations for the mission and goals of the foundation, including education and research about this rare and deadly cancer). I have personally confirmed with the executive director, an IBC survivor and advocate — All checks marked “research” will be used DIRECTLY for research grants to find a cause — and a cure — for this terribly fast moving disease trying to kill me and my friends.  (Disclosure: this is where I’m donating this year, as a selfish investment in my own future and in memory of those we’ve lost.)  This group gives me hope.  Real hope that medical researchers will find a real cure, and that I will live to rock on the porch with my husband watching the changing leaves of Fall when we are old together. 

Living Beyond Breast Cancer is an incredible support organization that has monthly teleconferences, annual meetings in Philadelphia, and a wealth of web and printed resources available for breast cancer survivors, family, and friends. They’re good people, and their Charity Navigator rating is four stars, with 82% of their income spent directly on programming. Donate directly or participate in one of their pink promotions if that appeals to you – just choose a product that donates a substantial proportion of the proceeds (“10% of the purchase price,” “50% of the proceeds,” or a dollar figure that works for you – there are partnerships with White House/Black Market, Chico’s, and Rubbermaid).

Other pink shopping: don’t be afraid, just check the label and ask yourself a couple of simple questions like I do:  How much of what I’m spending on this goes to charity?  Is it a charity I recognize? Do the contents of this product contribute to cancer (check out these pages on Eli Lilly and Estee Lauder for examples)? And last – am I buying this product just because it has a pink ribbon on it — and if so, wouldn’t it be better to just send a check directly?  If the answer to the last question is yes, put it down, my friends, and send a check for that amount when you get home to the charity of your choice.  Please.

October is much more than breast cancer awareness month.  While I’ve written a lot about breast cancer this year, I’d also like to give a shout-out to my friends in the babyloss community and the domestic violence awareness community who are also celebrating (if celebrating can even be used in this context) awareness months, as well as those whose cancers get significantly less attention.  Let’s all keep using our words and our dollars to make a difference in the world, and remember Margaret Mead’s quote: ”Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”