One, Two, Three, Four, Five, Six…by Mary Beth

April 29, 2012

Those words still ring in my ears… albeit fainter as the years go by… “You have Breast Cancer.” Life forever changed from the day of diagnosis. Today I add another tally mark, another year of survivorship, another year of losing more friends to this disease, another year of remembering and implementing  the lessons that I have learned from cancer, another year of hoping and praying that it does not come back, another year of making memories, but most important … another year of life!

cross-posted at marybethvolpini

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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.


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.


These are the Faces of Metastatic Breast Cancer, 2011 (by Judy)

October 18, 2011

These are the faces of metastatic breast cancer . . . . These are the faces of people waiting and hoping for research that could save their lives.

My face could be among those. Please watch.

For those living with metastatic breast cancer, support from family and friends can motivate them to keep fighting and living for the next available treatment.

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Cross-posted to Just Enjoy Him.


Featured Charity: The IBC Network Foundation (by Judy)

October 10, 2011

It’s vitally important not just to feature breast cancer charities, but for me, particularly, to feature charities that focus on Inflammatory Breast Cancer (which I have) which is a rare and deadly breast cancer.

As I’ve said before, IBC typically presents differently than “regular” breast cancer does. A woman with IBC may not have a lump at all, and it’s often misdiagnosed as a breast infection such as mastitis. Women who have features of IBC that don’t go away need to be vigilant in asking their doctors for tests that will identify breast cancer. Often IBC doesn’t even show up on a mammogram.

Enter Terry Lynn Arnold, an IBC survivor. She is so passionate about educating people about IBC that she founded The IBC Network Foundation. The goals of The IBC Network Foundation are, as its website states:

To fund research regarding Inflammatory Breast Cancer.

To provide an avenue to network proactive education to the general population as well as the medical community regarding Inflammatory Breast Cancer.

To offer college scholarship for students who have been impacted by this diagnosis of this aggressive cancer as a way to show support to our Inflammatory Breast Cancer community.

This is a relatively new organization which could sorely use funds to help their efforts. I fully support The IBC Network Foundation and am impressed with the work that Terry Lynn has already accomplished through this foundation. Instead of buying pink items this October, why not send a few dollars to The IBC Network Foundation? Every little bit helps.

Way to go, Terry Lynn, on establishing this foundation and on working to educate people about IBC. As I said, I’m impressed. 🙂

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Cross-posted to Just Enjoy Him.


It’s National Breast Cancer Awareness Month (by Judy)

October 6, 2011

and right now I’ll say little about how NBCAM has been coopted by oodles of corporations who slap some pink on something, sell it, and tell you that “portions of the proceeds from this product will go to breast cancer organizations” or something similar.

Instead, I’ll quote myself in a Facebook status update. This sums up my feelings about NBCAM. Now, mind you, I don’t think NBCAM is in and of itself a bad thing. I don’t think breast cancer awareness is a bad thing; I just don’t think it’s enough, after all these years. What I said was:

Here’s the thing: we need ACTION not awareness, we need RESEARCH TO SAVE LIVES not profits for companies that pink up their products every October.

Am I so cynical that I think that some companies just make a product pink to make more profit for themselves? Well, yes I am, mainly because THEY DO. However, I went over a lot of that information during last year’s NBCAM, and instead of going over it again, I’m going to do something different this year. This year, instead of griping and groaning about NBCAM, at least once/week I’ll feature a reputable breast cancer/cancer organization that I would personally support and tell you about it. In addition, throughout the year, I’ll send a donation to these organizations. I want to focus on some of the smaller organizations, those who don’t put a lot of money towards marketing and advertising, and some grass roots organizations that are doing research to help save lives or are doing other things to make the lives of breast (and other) cancer survivors better.

I hope to write about one organization tomorrow, and will go from there. If you have any suggestions for organizations that do good work and get little press/money, please let me know in the comments here.

Here’s to October! 🙂

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Cross-posted to Just Enjoy Him.