Little Pink Houses of Hope Video (by Judy)

This? Made me cry. I miss my Little Pink family SO MUCH.

Please watch and consider donating. It’s a wonderful organization.
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Cross-posted to Just Enjoy Him.

Ten Breast Cancer Charities I Support (by Judy)

It’s almost the end of October, National Breast Cancer Awareness Month. I hope by now you know that: it’s not enough to buy pink stuff (much of that money goes to the corporations who manufacture it), it’s not enough to be aware (we need action to save lives), and getting a mammogram isn’t always an indicator of whether or not you have breast cancer (for example, Inflammatory Breast Cancer often doesn’t show up on a mammogram).

I hope you also know that, even though I may not be crazy about the pinking of October and corporations making money off of breast cancer, I DO want a cure found. I believe in prevention, of course, but as I’ve said, anyone can get breast cancer. Unfortunately, as I’ve found out first-hand, nobody is immune from life’s difficulties.

However, there is hope. There’s always hope. There is important research being done. There are foundations that have been created to make memories for breast cancer survivors. And there are initiatives in the works to put more funding towards finding a cure for those of us with metastatic breast cancer.

This month, I tried to focus on the good, the positive, the organizations that are doing research and are helping breast cancer survivors. I ended up writing about ten breast cancer charities that I can, and will (as money allows) support. These are charities that are doing work I believe in. In alphabetical order, these are the charities I wrote about this month. I’m sure I’ve omitted many great breast cancer charities, but this is a start. I focused on charities that are grassroots, that are staffed mainly or solely by volunteers, that have a national outreach, and that either fund research efforts or do things for breast cancer survivors that they can’t (often due to being “cancer poor”) do for themselves.

The charities are:

1. Breast Intentions (formerly Breast Friends Forever).
What I wrote about Breast Intentions.

2. The IBC Network Foundation
What I wrote about The IBC Network Foundation.

3. Inflammatory Breast Cancer Research Foundation
What I wrote about the IBC Research Foundation.

4. Little Pink Houses of Hope
What I wrote about Little Pink Houses of Hope.

5. Living Beyond Breast Cancer
What I wrote about Living Beyond Breast Cancer.

6. Making Memories Breast Cancer Foundation
What I wrote about Making Memories Breast Cancer Foundation.

7. Metastatic Breast Cancer Network
What I wrote about the Metastatic Breast Cancer Network.

8. METAvivor Research & Support, Inc.
What I wrote about METAvivor Research & Support, Inc.

9. My Hope Chest
What I wrote about My Hope Chest.

10. Think Before You Pink, a project of Breast Cancer Action.
What I wrote about Think Before You Pink.

I hope you’ll join me in supporting these breast cancer charities as well as other grassroots charities that don’t have money for advertising and marketing, but are doing great work for breast cancer patients/survivors.
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Cross-posted to Just Enjoy Him.

Milestones by imstell

Hey, Everyone!  It’s been a while since I’ve logged on here.  That’s good news because if I was having active cancer issues I’d be on here daily. 

So, I’m here today to share some great news.  Last week I hit my 5 Year Survivor mark!  What a milestone!  I do feel blessed to be here, in this place, standing in the sunlight of cancer-freedom!  The odds were against me being here.  Inflammatory Breast Cancer (IBC) is not a kind and gentle cancer.  The odds moving forward aren’t really much better but I’m confident in my ability to survive again! 

Five years ago I was given a 90% lifetime risk of recurrence.  I don’t think that has really changed after 5 years (but I’ll be sure to asked my Oncologist when I see her next!).  Unlike other breast cancers where recurrence drops dramatically after the 5 year mark (75% of recurrence occurs in those first 5 years), IBC does not.  Depending on which study you read, the overall percentage of women who reach 5 years  survival is somewhere between 52% and 56%.  That is not necessarily Disease Free Survival (DSF) like mine.  These figures include people like our own WhyMommy who are living with metastatic disease (Metavivors), but living nonetheless.  Still, in the not-so-distant past women with IBC survived only an average of 18 months after diagnosis.  We’ve come a long way, Baby! 

Yet there is still so far to go…  Survival rates for Inflammatory Breast Cancer at 5 years is roughly 54% (I’ll split the difference in the studies).  10 year survival rates are 35% and drops to 28% at 15 years.  Staggering!  Only 28 of every 100 Inflammatory Breast Cancer patients will live 15 years beyond their diagnosis.  These are horrible figures for a young woman’s disease! 

On to better news…  I celebrated my AWESOME MILESTONE with a big party and a tattoo to commemorate!

Don't ask me why it says "in" counting...

Survival Tattoo

The pink ribboned butterfly represents my metamorphosis from cancer patient to cancer survivor.  The dandelion holds the wishes for my cancer sisters’ complete recoveries.  The floating dandelion seeds are for each of my years of survival (there are supposed to be 5 but I need it touched up).  The white (pearl) bird is for my Grammy who recently died of lung cancer.  The fuchsia one is for Andrea (Punk Rock Mommy) – my first IBC loss.  And the pink bird is for Sarah of Sprucehill whose passing hit me so very hard.  I hope to add many, many more floating seeds over the years and no more birds.  Ever. 

More news:  I’ve added a link on the HELP page for a Care Calendar.  My gf is using it for meal sign ups.  It’s easy peasy and it’s FREE! 

Cross-posted to I Can’t Complain Any More Than Usual

Featured Charity: Making Memories Breast Cancer Foundation (by Judy)

Making Memories Breast Cancer Foundation is exactly that: an organization that makes memories, wishes for those who have metastatic breast cancer, and, depending on the wish, their families.

Their mission is:

To provide an opportunity for metastatic breast cancer patients’ dream or wish to be fulfilled by providing a special time of ‘Making Memories’ together with their families, a chance that might not have become a reality without the assistance of the Making Memories Breast Cancer Foundation.

To advance the awareness of breast cancer and to educate the public about the vast resources and support available to breast cancer patients and their families.

Recognizing the huge financial strain placed on families wherein a member has metastatic breast cancer, Making Memories provides a way for metastatic breast cancer patients to make wishes come true, whether they’re in the form of a trip with their famly, a way to bring family to their bedside, or grants for publishing memoirs or other endeavors.

Making Memories hosts events and promotions as fundraisers. In addition, their website is a source of information about subjects including breast cancer facts and FAQs. Naking Memories currently has a list of wishes from people who have applied to Making Memories.

I think organizations like Making Memories are vitally important to metastatic breast cancer patients who find their finances depleted from cancer treatment and wish to make memories for themselves and their families. I plan to financially support Making Memories somemtime during the coming year. I hope you’ll join me in doing so as well.

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Cross-posted to .Just Enjoy Him

Featured Charity: METAvivor Research & Support, Inc. (by Judy)

You may be wondering what a METAvivor is. I didn’t know the word until I started writing about breast cancer grassroots organizations and ran across METAvivor. METAVivor provides a definition of the word:

A person living with a metastasis. It combines “vivor” (from “survivor”) with “meta” (from “metastasis”).

From this, I found out that I’m a METAvivor. I have to say, I like that word. Because my cancer has always been stage 4 (it metastasized to the liver) and it’s incurable, the word “survivor” didn’t seem to quite fit, but I don’t like describing myself as a “breast cancer patient” either just because I’m much more than that. And I hate the word “victim” because I am in no way a victim. I live with this disease as well as I can, and if I do say so myself, I think most of the time I live quite well with it.

But enough of that. Let’s talk about METAvivor Research & Support, Inc. This is a grassroots organization that is staffed fully by volunteers. It’s describes itself as:

a 501(c)(3) non-profit organization run entirely by volunteers, mostly with MBC. We created METAvivor because we believe the following:

•Support for MBC patients is greatly lacking
•Awareness of the disease is appalling low
•BC mets research is horrendously under-funded

and its mission is:

•We offer local support
•We help people elsewhere establish support programs
•We seek out speaking engagements, media opportunities, and other venues to make our voices heard
•We award a MBC research grant every year

METAvivor now has an initiative that is called “30% for 30% Campaign.” This campaign’s goal is to get metastatic cancer research funded at the level that metastatic breast cancer occurs.

On October 10th, METAvivor Research and Support launched its 30% for 30% Campaign in a concerted effort to improve longevity and quality of life for persons with metastatic breast cancer (MBC). The concept is simple: Since thirty percent of all breast cancer patients develop MBC — a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC. At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.

Of course, as a METAvivor who is greatly upset at the lack of funding for metastatic breast cancer, I fully support this effort. I hope you will too, and will consider donating money to METAvivor . . . instead of buying more pink stuff.

I’m just sayin’.

Good work, METAvivor!
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Cross-posted to Just Enjoy Him.