Stream of Consciousness (by Judy)

November 4, 2011

I was just looking at my notes from the Metastatic Breast Cancer Network (MBCN) Conference that I attended last weekend in Baltimore, MD. I was hoping to find something that would lend itself to a coherent, theme-specific post, but instead I find little bits of information, some of them like golden nuggets that I can stash away until MBCN has the conference and power point slides online in about a month.

I wil share some of these nuggets, though, these little bits of information that, for whatever reason, struck me at the time as important enough to write down.

So here goes a disjointed, fragmented post . . . even though it’s all about metastatic breast cancer (MBC). That’s the thread that holds it all together.

One of the speakers talked a little bit about how the Network first was formed because two women, both with MBC, felt isolated and alone in support groups of people with early stage breast cancer. Things like going pink all of October or celebrating the end of treatment “is not possible with metastatic disease.” I know what she means, what the founders meant. I chave totally different conversations with those with early stage breast cancer (BC) than I have with those who have MBC. The ones with MBC seem to intuitively know what I’m going through, what I’m feeling and even thinking. They understand the very real fear of dying, of leaving this earth before I’m ready. They understand the worry I have for my child, my husband, my little family. They know that talking about death doesn’t mean that I’m obsessed with death or that I think I’m going to die soon. They understand that it’s a deep need to understand what will eventually happen to me with this metastatic disease. They understand all of these things because they live with these things themselves.

Approximately 30% of people diagnosed with early stage breast cancer will at some time develop metastatic breast cancer, cancer that has spread to organs other than the breast. Breast cancer, if confined to the breast, doesn’t kill. MBC, however, kills. And there’s very little research done on MBC.

One of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We can’t join the throngs of “survivors” if we’re not going to survive this disease. We know we’re different, that we’re what they fear the most. How can we join in when we’re the black sheep of the breast cancer movement, the bad girls of breast cancer?

We can’t. We stand out. People get quiet when we tell them that we have MBC. They don’t, understandably, know what to say, although I think an “I’m sorry” or “I’m sorry to hear that” is always something you can say to people who are struggling not just with breast cancer but with so many other things that happen to people.

We are the 30%. I am part of the 10%, the percentage that was diagnosed with Stage 4 disease from the outset. I guess that makes me one of the REALLY bad girls of breast cancer. And it makes me unpopular with some people, with people who only want to see the happy stuff, with people who are uncomfortable with my diagnosis, with people who just can’t face the fact that I won’t be around someday, that barring a miracle or sudden death from something else, this cancer will take me in a horrible way.

Trust me, it’s not something I like to think about, but I have to. I have to try to prepare my loved ones that someday I won’t be here, I may be in hospice care, they may watch me die. Believe me, I don’t like that image any more than anyone else does, but the difference is that I can’t pretend that it doesn’t exist, I can’t say, “Oh, you’ll beat it,” because MBC is an equal opportunity killer — it takes fighters, optimists, supplement-takers, vegetarians, the religious, etc., just as much as it takes everyone else.

I will die from this. My husband, bless his heart, still says, “I hope not,” even when I try to talk to him about things that are important to me, that I think he’ll need to know about if it gets to the place where he’ll have to raise our son by himself.

*sigh* It’s a hard life. Even so, I love my life and I have an amazing God and I hope and pray for treatments to extend my life for a very long time.

That, and a good medical team, keep me alive for now . . . .
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Cross-posted to Just Enjoy Him.


Saying Goodbye (by Judy)

November 3, 2011

without saying the actual word.

Yes, my friend is dying. She’s a friend I met in May 2011 at Little Pink Houses of Hope first beach retreat week. I don’t know how much of this information her family would want written about publicly, so I won’t name her, but I’ll call her AM.

AM is a wonderful person. A true lover of life and lover of people, she became friends with all of us quickly. Her voice and laughter resonate with me even now. I came to love everyone in my Little Pink family that week; AM was certainly no exception.

So today I wrote her a letter on behalf of her Little Pink family. My heart hurts. It’s hard to write something like that, even when you don’t, or can’t, bring yourself to say the word “Goodbye.” Even when we know . . . or believe, that she has little time left, we still hold out hope for a miracle for our AM, for we can’t imagine our lives without her in them.

I wrote the letter. It’s on behalf of our whole Kure Beach Little Pink family. I was trying to strike the right notes, to tell her how much we love her and miss her without actually saying that dreaded word.

But it’s there, in the subtext, in the ether, so to speak, of the words on the computer screen. It’s there . . . I’m just too scared or too stubborn or too something to say “goodbye.”

Even so, it was a hard letter to write. My heart hurts today for AM. My heart hurts for me. My heart hurts for her husband. My heart hurts for everyone who loves AM.

And now I’m going to be bold and ask for donations for this wonderful organization, Little Pink Houses of Hope, in honor of AM. Even a small amount would help, and I’m sure it would warm her husband’s and her family’s hearts when they see that people have donated in honor of their beloved AM. Little Pink has a donation button on their homepage. I plan to do this myself.

I know AM and her husband loved the retreat week. I know they made lifetime friends. I just wish for a miracle that AM’s lifetime is extended somehow.

I wish for it . . . not just for me, but for her, her family, and her other loved ones.

In the meantime, there’s not much I can do . . . .

but pray.

Saying prayers for you, AM, and hoping for a miracle for you . . .

and for those of us who love you.

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Cross-posted to Just Enjoy Him.


For Those Living with Metastatic Breast Cancer (by Judy)

November 2, 2011

Researchers are surveying people living with metastatic breast cancer about how they make treatment decisions. If this applies to you, please consider taking the survey. Their deadline for the survey is November 11. Thanks so much.

SURVEY
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Cross-posted to Just Enjoy Him.


Little Pink Houses of Hope Video (by Judy)

October 31, 2011

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)

October 28, 2011

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.


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

October 27, 2011

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)

October 25, 2011

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.