Monday, December 21, 2015

I Am Out of Words and My Heart is Broken

You'd think that with upwards of 112 of us dying every. single. day, the blows wouldn't be quite so crushing at this point. That perhaps we'd get used to it. Become numb, maybe. Like the rest of the world sometimes seems to be to our plight.

But every so often, a death (or group of deaths) comes along and it feels like we've collectively been punched in the gut. Our hearts ache. We are angry, and scared, and fucking tired. But we know we've got to carry on this fight -- even as we receive chemotherapy and take care of our children and look into clinical trials and try to enjoy every moment because we know more than most how limited time can be -- because who else will fight for us?

Who?

Forty thousand American women lose their lives every year to breast cancer, and yet researchers at the San Antonio Breast Cancer Symposium -- the LARGEST conference in the country addressing breast cancer research -- had almost nothing to say about metastatic disease this year. I was there. I waited for a breakthrough announcement. I listened to the recaps afterward, hoping I'd missed something significant.

Instead: "The mets research isn't ready for prime-time," is what I heard.

How long do we have to wait? Since my diagnosis, approximately 173,333 women have died of breast cancer in the U.S. alone.

"How can we express our urgency?" we asked.

"We get it, just keep doing what you're doing," we were told.

BUT CLEARLY IT IS NOT "GOTTEN" when nearly 8,000 clinicians can gather and have no news about stopping metastatic cancer, the only breast cancer that kills. Instead, we hear case studies about drugs extending our lives by a few months. 

A few months doesn't get me to see Quinn start kindergarten. A few months is not even close to enough. 

A few months ago, my friend Adrienne was told she had no evidence of disease. She took her little boy to Disney World.


On Saturday morning, she died of metastatic breast cancer that caused her liver to fail. Poof -- gone, just like that. Another little boy to grow up without a mom. A dad left to explain how she would have stayed if she could have. Another young woman dead long before she should be.

I am angry, and I am terrified. And this weekend, I felt like maybe we as advocates aren't doing enough to make our voices heard, like we let Adrienne (and about six others in my direct circle this week) down. But we can only do so much. We are exhausted, and doing our best.

Who else will fight with us?

I am at chemo today, 4 days before Christmas, wondering how I'm going to get everything done that needs to be done this week to create magic for my little boy because that's what my parents did for me, but also feeling so very lucky just to be here another holiday season. How deranged is that, to have to wonder about whether this Christmas might be your last because the average lifespan after a metastatic breast cancer diagnosis is 33 months.

At 52 months and counting, I am on high alert for when that other shoe might drop. Yes, I have hope I'll be here long-term. But I also know the realities of this disease. They've been especially hard to face this past week.

Quinn asked me what was wrong several times on Saturday, as I sank to the kitchen floor in my grief or cried as I heard the lyrics, "Home is wherever I'm with you..." on the radio while we tried to get in some last-minute Christmas shopping. He offered me big, strong, bear hugs, and all I could manage to tell him was that a friend of mommy's got some bad news.

What else is there to say to a four-year-old?

The truth is, I do not know what to say anymore. My heart is broken. Shattered in about 112 pieces today alone.

Please, please help us.

28 comments:

  1. Thank you. Very sad. Very powerful.Praying for all of us. Thank you for spelling it out so clearly.

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  2. Thank You for this post. Very Very Powerful! <3

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  3. Thank you for this very moving post. xx

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  4. Heartbreaking story. But, it isn't the only cancer that kills. It's the only breast cancer that kills. I'm losing my fight with this terrorist, but I know many cancers with no cure alsom

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    1. Pardon me. I meant the only breast cancer that kills, and I have updated the post to reflect that. I'm sorry about what you're facing. I know there are many types of cancer that kill, having personal experience with a couple of them. I would love to see a cure for them all.

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  5. Heartbreaking story. But, it isn't the only cancer that kills. It's the only breast cancer that kills. I'm losing my fight with this terrorist, but I know many cancers with no cure alsom

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  6. I will do my part for now by sharing this story. Thank you for your words and your fight. Keep living!

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  7. I am so praying for you and so sorry for your friends loss, I will share and repost this, many prayer and hugs for you. xx

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  8. My condolences go out to her family. This is heartbreaking. I didn't know her but the news still affects me -- It's personal. I am sorry not much has been done to save more patients. I am sorry you have so much fear. I have fear too.

    What you wrote about the symposium sounds discouraging, as well as scary. They are taking too long and we continue to lose so many women (and men). We need more.

    I hope you find a sense of peace during these holidays.

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  9. I am so sorry, I can't even begin to think how you must feel. But I can...I too was diagnosed with Breast cancer 8 years ago, and I'm still feeling the pain that it has caused, and caused for others. Just reading this story did bring tears to my eyes, no one understands until you have received this kind of news. Going thru it is a,whole another story in its self. Yes..yes...yes we need to find a cure and we need to find it now!This story not only made me cry, not just for her but for her little boy. Someday he'll want to know all the answers to his questions, and sometimes I'm not sure if anyone can really answer them. I truly hope you can find peace this Christmas!

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  10. I am so sorry, I can't even begin to think how you must feel. But I can...I too was diagnosed with Breast cancer 8 years ago, and I'm still feeling the pain that it has caused, and caused for others. Just reading this story did bring tears to my eyes, no one understands until you have received this kind of news. Going thru it is a,whole another story in its self. Yes..yes...yes we need to find a cure and we need to find it now!This story not only made me cry, not just for her but for her little boy. Someday he'll want to know all the answers to his questions, and sometimes I'm not sure if anyone can really answer them. I truly hope you can find peace this Christmas!

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  11. Please,please,please all those who have been treated with chemotherapy - go see a natropath and get your body cleared of the heavy metals and othet damage that has been done. I finished chemo end of August and have suffered joint and muscle weakness and extreme exhaustion ever since. My oncologist and doctor say it has nothing to do with treatment and prescribed pain killers. I now am seeing a naturopath and my blood is abnormal and liver and body cells compromised. I am on natural supplements and Vega therapy and am now beginning to recover. He says I was very susceptible for secondary cancer given the poor state of my body and the high oxidative stress i was experiencing. Please give it a go. Merry Christmas to all xxx

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  12. Please,please,please all those who have been treated with chemotherapy - go see a natropath and get your body cleared of the heavy metals and othet damage that has been done. I finished chemo end of August and have suffered joint and muscle weakness and extreme exhaustion ever since. My oncologist and doctor say it has nothing to do with treatment and prescribed pain killers. I now am seeing a naturopath and my blood is abnormal and liver and body cells compromised. I am on natural supplements and Vega therapy and am now beginning to recover. He says I was very susceptible for secondary cancer given the poor state of my body and the high oxidative stress i was experiencing. Please give it a go. Merry Christmas to all xxx

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  13. I'm sorry for your loss .
    It happened to my friend Michelle this year - just like that. One week she was here and stable, then gone the next 47yrs old. Diagnosed with bone mets 11months before that.
    I hope you every to live well as long as you can and we find a CURE sooner.
    I live in fear in every day ,and not just for Breast cancer, sarcoma too - just as deadly and not enough research.

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  14. Adrienne was a mighty woman in her tiny frame. I knew her since she was a preschooler. Our entire community is mourning her loss. We turn to others to share and to be comforted. Thank you for offering us your words. It is comforting to know that Adrienne's life meant so much to so many.

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  15. I have the same fears as yours. Nevertheless, try to enjoy Christmas. I know it is hard but what choices do we have anyway. .

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  16. I can't imagine the overwhelming feelings you have... I won't say I know how you feel because I don't. I can tell you I lost my very best friend with disease after 18 years... but we are getting closer to a an answer ...speak out and make others aware of the need...bless you

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  17. My sister was diagnosed with metastatic breast cancer in August.She started new chemo in Texas that hopefully will work.My heart breaks for her,her kids and myself thinking she may not be here one day. You and your family are in my prayers
    .

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  18. This leaves me with a pain in my chest and heart in my throat ... much love and many prayers for all of us ...

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  19. This leaves me with a pain in my chest and heart in my throat ... much love and many prayers for all of us ...

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  20. Positive thinking send to you...Angels !

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  21. I have had that running through my mind all month. "Is this my last Christmas?" "Crap! Should we have done XYZ because this is my last Christmas?" - the losses have been a gut punch this month as you said. Painful.

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