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Archive for the ‘Amazing women’ Category

My Super Six

My daughter is selling Girl Scout cookies and this year our council changed to a different baker and this changed the selection.They have now, what they call, the Super Six. Right after I was diagnosed I read a book called “Crazy Sexy Cancer” by Kris Carr (Awesome book by the way) and she talks about putting together your own cancer “posse” so you can get the support that you need and that works best for you. I refer to mine as the Super Six.

Darlene, Eleanor, Julie, Tami, and me make up the Fighting Five and you add my friend Diane and you have my Super Six.

I’m asking for prayers for every one of them.

All of us are stage iv survivors and right now several are really struggling. One has brain mets that are not cooperating. One is experiencing a lot of pain, one recently had brain surgery, one is showing improvement in one location and growth in another, one is contemplating discontinuing treatment. Two of them have real difficulty with chemo and other standard drugs, one is running out of chemo options. (Just to keep any friends from panicking, none of those are me, I’m on a chemo break until scans in March) Four of us have children under the age of 13. A couple of them live a long way from me and I don’t get to talk to them or see them nearly often enough.

I cannot imagine my life without any one of them and I would just as soon not have to deal with it. So, please, pray for healing, pray for good decisions to be made, for answers to present themselves and for pain to be gone. Pray for the right treatments to be found, new options to present themselves, and to have the support needed. Pray for the families too while you are at it. There is never a break from this, especially for those who live under the same roof with us, it is always there even when we are acting like it isn’t.

Thank you, thank you for praying for my friends and thank you for praying for me.

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This woman has had more than her share of things to deal with, the loss of a child, the mess her husband made of things and breast cannsir to boot. Sadly, today the news came that she is discontinuing treatment and has been told that further treatment would be “unproductive”. Reports also say it has spread additionally but do not mention specifics. She is at the place that so many of us _______________ (fear, dread, try not to think about, don’t ever want to get to.). Her kids are 28, 12 and 10. They should NOT be losing their mother and they shouldn’t be losing her this way. She has been asking for eight years, she wants to see her kids get out of school. I can completely relate. That is what I pray for every night… to raise my children. Seeing a grandchild would be awesome but just getting my kids to adulthood. That is something I really want, I’m sure she does too. I cannot imagine what she is going through right now and I try not to because I know that someday, it could be me getting this same news and I may have to deal with this exact situation.

I don’t know what treatments she has tried. I don’t know if she has looked at alternative treatments or whether she takes supplements or has changed her diet or any of those things. If she hasn’t I hope she does.

My prayers go out to her and her family. I hope the doctors are wrong.

Edited to add: 12/7/2010 We received the news today that Elizabeth Edwards passed away this afternoon. Another mother taken from her children far too soon. I am surprised still, mostly because of how quickly this all happened. It is tough to be a stage iv warrior when someone with this high a profile loses the fight, it can be disheartening. I have to remember that her story isn’t my story and nothing is written. None of us know what is coming or how long we have but this is a case where longer would have been better.

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particularly inspirational ones in a book written by someone who I am blessed to call my friend. The book is “From Incurable to Incredible: Cancer Survivors Who Beat the Odds” by Tami Boehmer. In February 2008, shortly after celebrating five years cancer free, she had a recurrence and was now a stage iv cancer survivor. This book is filled with the stories of people who have overcome a grim cancer prognosis, some of whom remain cancer free, all of whom have already beaten the odds. Her website is Miracle Survivors: inspiration and information for cancer thrivers

I met Tami almost exactly a year ago, at a picnic being held by The Pink Ribbon Girls, a breast cancer survivors group, and Tami was talking about this book that she was writing. Eventually she was my roommate at two different conferences and she flattered me by asking me to proof read her book.

The book is published, available online and in some stores and she has made appearances on several local television stations. Tonight she had a book signing. My husband and I went over for awhile and I got to meet and talk with one of the survivors featured in the book. Three of the survivors who are in the book were there tonight and Tami asked each of them to say a few words. It is always inspirational, motivational, and just fills my heart with joy to hear from people who have kicked this. I am so proud of Tami and I am so grateful I have met her, despite the circumstances.

Tami – I wish you much success!

If you know someone who needs to hear stories of hope, buy Tami’s book for them.

“Once you choose hope, anything’s possible.” ~Christopher Reeve

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I couldn’t even share it on here for awhile, I was just too stunned, and it was someone I never met in person and whose voice I never once heard. There is a discussion board, youngsurvival, that I am on. I don’t participate a ton as I still feel like I’m learning and don’t have much to give back compared to some of the people who have been on much longer and as someone who started her journey at stage iv, gets really emotional easily. So I looked in the ibc section last summer and there was two posts by the same woman, one from March announcing that she had been declared cancer free and another saying that she started a website. I went to take a look.

I actually laughed when I saw it, if you have read anything about ibc you know it really isn’t humorous but across the top of her page was IBC…OMG…WTF – that about sums it up. So I sent her an email telling her that I liked her site and we became ‘friends’. Told each other our stories and friended each other on facebook and I took a lot of hope from her. Her name: Treena. She had been diagnosed with ibc in August of 2007 when she was pregnant with her daughter. She was declared free of it in March 2009.

In early December she emails me and tells me it is back, involving her liver. Turns out it was other places too but the liver was the worst of it. We email back and forth and IM on facebook when we are both on. She sent me some books and two gift cards at Christmas. Generous, beautiful lady. We PM in January and then I get my scans in February and then decided I had something I wanted to send to her so I look at her FB page to find her phone number and discovered she died.

As near as I can tell we were messaging on January 14th. She was admitted to the hospital January 16th and left us on January 22nd. Somehow I missed the post on facebook. I was stunned, the last I had heard she was achy and a little weak and taking chemo. I’m still stunned. I cannot believe she is gone. She was upbeat, spirited, generous, and she had a baby girl, Evie just turned two at Christmas, to fight for.

I joke about it, and my spirits are generally good, but this thing is still a killer and I have to beat it. Her story is not my story, but our paths crossed and for a little while we walked together and became friends and I’m sorry I won’t ever hear her voice but I am sorrier for her daughter who won’t remember it. We NEED a cure, this is not the story I want for my kids.

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I’m feeling frustrated today. A friend let me know that she is helping another young woman and mother get in touch with me. This woman has a 2 1/2 year old and was just diagnosed! What is the deal?! This is just wrong! There are way too many being diagnosed and it seems like there are more and more being diagnosed young.

I’ve met some absolutely amazing, dazzlingly beautiful women and it has nothing to do with their looks. I hope they’ll forgive me when I say that I wish I had never met them. We are connected through a deadly disease and the list just gets longer. Tami, Diane, Treena, Lori, Tracy, Chris, Jocelyn, Pattie, Andrea, Katie, Eleanor, Cousin Tami, Cousin Judy, Kathy, Deb, Julie, Nancy, Connie and several others from chemo whose names I always mess up but whose faces I’ll know anywhere. Then there are all the survivors of other versions and those we have already lost, Charlie, Susan, Susan, Kevin, Nancy, Ken, and Brandy among them.

There are all kinds of organizations devoted to this and a plethora of things to raise money for this disease. I’m a member of the Pink Ribbon Girls and they are sending me to a Conference for Young Survivors of Breast Cancer which will also be heavily attended by members of the YoungSurvival.org website (a site for bc survivors). Who would have ever thought such a thing existed, and I wish it wasn’t needed. I’m excited to go though; I’ll get to meet more amazing warrior women who I will love and who I will wish I didn’t need to meet. I got an email today about stamps at the U.S. Post Office, they are $.55 instead of the regular rate of $.44 and the difference goes to breast cancer research. Avon has a 2 day, 39 mile walk that I heard advertised on the radio last night, Komen has their regular 5K walks and 3 day walks – heck there is an entire MONTH dedicated to it.

I don’t want a month. I want it gone from me and the world. I want Breast Cancer Awareness Month to not be needed and to free October up to be awareness month for something else. I want this to be something that isn’t stealing mothers from their children, and I don’t just mean through death. I can’t tell you how many hours I have spent in one doctors office or another, time in the hospital, time recuperating, time just being too tired to do what I want. My kids adjust and yes, I am thankful to be here for them but it already ‘takes me from my kids’.

I used to have a general practitioner and and ob/gyn – now I also have an oncologist, radiation oncologist, breast surgeon, plastic surgeon, ENT, and therapist. I have a friend who is a Reiki practitioner who helps me out. I need to add at least a nutritionist to that list and should add a holistic practitioner and patient advocate. I’ve also considered an herbalist, acupuncturist and masseuse. Of course most of those aren’t covered by insurance and aren’t currently in our budget. I’m trying to lower my toxic burden and go even more organic – which is expensive – and exercise more consistently, all of which require time too.

This is a full time job and of course I have to do it to keep my other full time job – MOM.

But today I’m frustrated.

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