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"I AM NOT MY BREAST CANCER" is out!! - Event Date: Feb 01 2008

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CarynRose View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Calendar Event: "I AM NOT MY BREAST CANCER" is out!!
    Posted: Feb 01 2008 at 1:58pm

All --

I have been participating in a small group online dialogue over the past four years with over 800 breast cancer survivors.  It was called First Person Plural or FPP for short.  The purpose of the discussions was to share breast cancer experiences amongst ourselves -- eg: How we found out; who we told first; family issues; dealing with treatment; what happens after treatment; recurrence, etc. etc. Then, the author organized the book so that women (and men) with breast cancer can use the book for advice and understanding.

The book has just been published and is called "I Am Not My Breast Cancer". It's available at Amazon.com, Barnes and Noble, Overstock.com, among other places.   The author is Ruth Peltason.

Here's a link to the book on Amazon:

http://www.amazon.com/Am-Not-Breast-Cancer-Daughters/dp/0061174106

And here's a review:

(HealthNewsDigest.com) - Breast cancer. It’s the diagnosis all women fear. Ruth Peltason, who has twice undergone treatment for breast cancer, understands this as well as anyone. After experiencing the isolation and loneliness that often comes with a cancer diagnosis, she realized that if women with cancer could engage in an extended, open dialogue sharing their common experiences, they could create a connection that would truly be comforting for themselves as well as for other women, their family, and friends.

With that in mind, Peltason co-founded the “First Person Plural” website project, an online forum in which 800 women with breast cancer from every state and across the world had ongoing, honest dialogues. Peltason has brilliantly woven together these voices to create I AM NOT MY BREAST CANCER—an “oral history” of breast cancer, told by women who share their real-life experiences of breast cancer. Because of their common experience, the women developed intense, caring relationships and openly delved into the concerns and feelings many of them had never spoken about before. Collectively, these women—identified in the book only by their “pen” names and candid perspectives—are the face of breast cancer today.

I AM NOT MY BREAST CANCER takes the reader chronologically through the stages of diagnosis, living with breast cancer, and thinking about the “big picture.” Peltason, who shares her own experiences throughout, has compassionately edited this book, which goes from juggling the day-to-day realities of being a patient and a woman, mother, wife, and coworker to dreaming about the future. The outcome is spirited, genuine, and friendly: every woman who reads this book will feel comforted by the words of those who have fought the same battle.

The only breast cancer book to share advice and wisdom from such an array of real women, I AM NOT MY BREAST CANCER offers the good and the bad, the funny and the tragic. Nothing is edited to make for more “uplifting” content—every word is real and honest, from the optimistic to the realistic.

“I feel like taking off my shirt and showing people my one breast and saying, this is what breast cancer looks like. There’s nothing pretty about it.” –Agent99

“I’m a very proud mother and leaving this world right now is just not an option.” –Jackjoy

“I don’t feel as comfortable discussing my fears about recurrence and the future with my healthy friends as I do my friends with breast cancer. My breast cancer sisters know what I am talking about because they are feeling it too.” –Raesinthesun

“I feel sexy, but I’m afraid to have sex!” –gloami

“Ladies, normal is only a cycle on the washing machine.” –Purplepassion

I AM NOT MY BREAST CANCER is part support system part honest analysis from women who’ve been there. Each entry will remind women with breast cancer, and their loved ones, that although they are facing breast cancer, they are not defined by it. "


Please take the opportunity to read this book. It is a true labor of love.
 
All the best,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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CarynRose View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2008 at 2:00pm
Some how I made this an 'event' and it's not.... don't know how to change it.
 
Sorry.
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2008 at 2:13pm

Thank you Caryn and all the wonderful women who put to words....the thoughts and feelings that sometimes we do not want to acknowledge as our own....because then they becomes too frightening!

Connie cg---

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2008 at 11:51am
I cannot wait to get my hands on a copy, it's in the mail!
 
Yes a big thank you to CarynRose and all of the other women who participated in this forum.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2008 at 6:46am
Wow Caryn,  Good for you!!!   Way to make lemonade!  The neat thing about breast cancer (I can't believe I just wrote that) is the overwhelming sense to reach out to other people.  I think getting out of ourselves and into helping people is the miraculous gift we can receive from this experience.  I just want to tell you "Thank You"  for all you've contributed with your caring, time, knowledge in this forum (the only one I read)  I know you have had a really crappy few years and you taking the time to help so many really really really makes a difference.  You're a gem!
 
So do we get to know your secret name??? or will we figure it out (cuz it's still CarynRose)?
 
All the best
 
Ronda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2008 at 2:31am
Ronda,
 
Thank you for your kind words.  Truly for me, the only way I can make any sense of what I've been through over the past 5 years or so is to use it to make a difference in others' lives.  It makes no sense otherwise.
 
And, yes, my name is CarynRose in the book.  It is my moniker all over online.
 
All the best,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2008 at 2:15am
This is SO awesome. I cant wait to get it and read it. I like real people answers on how they feel, instead of the sugar coated usuals you get from the books and flyers they gave me at the start. I read one book, was 1 womans story about her own, and she talked about some of her groups, think maybe it was called...Leave me alone, I am having a NO HAIR day.......talked about herself and other women in her groups being on just about the same meds and treatment plans, and the few of them rode the storm together...When I wander around this site in all the different topics, and read the 'battle tags' under each womans post, see what they have been thru, I am stunned at how radically different our treatment plans have been and/or are. Even tho alot of the surgeries women have chosen, all the way from no surgery, to radical bi-mast,re-con or no, by choice,or need, and then Chemo and Rad Times, dosage, stage in treatments, which is first, surgery, rad, chemo, how many days a week, or bi-wkly, diff meds, the variations just amaze me. it just....I am not sure if shocked/stunned is the right word, but seems each womans is original. Seems to vary even MORE based on location. Has anyone else noticed this? Or am I just weird, Wacko Each person/case/involvement is different, I realize, but WOW! I can hardly wait to get this book, it sounds fantastic. Thanks s much for sharing this Caryn!!
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2008 at 11:49am
CarynRose,
 
HOW WONDERFUL !!!!!  I can't wait to get this book !!!
 
You must be sooo proud to see the tangible result of your heartfelt empathy with other women who share our plight.  I have so much admiration for your, as someone earlier wrote, making lemonade out of our painful situation.
 
Hugs,
Jessie  
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2008 at 6:46am
I am halfway thru the book and can hardly lay it down.  Finally, real, honest comments from people going thru this horrible disease.

Edited by trip2 - Feb 07 2008 at 6:47am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2008 at 5:07pm
I'm thrilled to hear feedback from women who have not been part of this project.  We think it's great, but we might be too close.  I'm glad to see it resonating with others.
 
Check out YouTube for our promotion (I'm at the end -- the first person after the author, the one with the light blue hat).
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2008 at 5:05am
Oh CarynRose you are soo pretty, just like your name! 
 
I finished my book last night and am going to take it up to Indiana and give to Heidi my daughter who you probably know was also diagnosed last year.  The book is great and I think everyone should have a copy if they want one.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2008 at 5:55am
Hi Caryn,  It's great to put a face to the story! Keep up the good work.
 
Here's the You Tube link for anyone one who wants a peak.
 
 
Ronda
DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2008 at 8:27am
I totally agree with you about the wide variation in treatment, it fascinates me as most of you guys are in the same country (USA) and as I am in Europe (Ireland) I am wondering about the different ways we are all treated. I get the sense though, even in my own hopsital where there are 2 prominent oncologists, that they treat differently ( in terms of chemo regimes).
It seems very extreme to me, to decide not to have chemo if there is ANY possibility that you have cancer cells floating around in your body, and yet clearly people are making that call in the  USA. I know that it is 'blanket bombing' your body and has awful side effects, but surely that is worth it to reduce your chance of recurrence?
 
Good luck to all of us. I love having this special forum for our unusual strand of this disease, we may be in danger of boring our friends and family to death with this topic, but we guys just love talking about i!!!
46yrs: DX 12/07:Lumpectomy:Stage 2a:Grade 3: TNBC
Lymph nodes neg (SNB)
Clear CT and Bone Scan
Taxotere & Cyclophosphamide x 4,
25 Rads, Fin June 08
My Mom ER neg 1988, still here, no recurrence.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2008 at 9:09am

Katie,

I'm fascinated also by the various treatment options even within a country, but I'm also very interested in the options between countries.  There is now a movement in the U.S. for socialized medicine and I'd like to know how well cancer patients fare in countries that already have this.  I really can't trust what is said on TV about it.  Much better to hear from those who experience it.
 
On a related subject, the option for chemo was ruled out for me because of a MRSA infection, then heart issues.  By the time both these conditions were resolved (taking about 8 months) I was told my "window of opportunity" had passed for the chemo to be effective.  My onc can't really explain why the chemo isn't effective after 3-6 months from diagnosis.  Seems to me it would be just as effective later.  Anyone else heard of this time restriction on chemo treatments ?  Confused
 
Good luck on your chemo starting next week !
Hugs from North Carolina,
Jessie  
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2008 at 10:56am
I have never heard of that Jessie, I have cancer deaths multiple on my paternal side. How about people who didnt know they had cancer for a while, yur diagnosis time has no bearing on when you ge chemo. I think I would be highly questioning that, and get another opinion right away.
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2008 at 9:36am
I totally agree - that sounds like BS! Perhaps your heart condition is an issue, but to say you "missed a window" makes absolutely no sense.
 
I am only starting chemo next week, 8 weeks after the lumpectomy, there doesnt seem to be any burning urgency to start the chemo and a few weeks here or there doesnt seem to matter. Definitely worth getting a second opinion if you can!
46yrs: DX 12/07:Lumpectomy:Stage 2a:Grade 3: TNBC
Lymph nodes neg (SNB)
Clear CT and Bone Scan
Taxotere & Cyclophosphamide x 4,
25 Rads, Fin June 08
My Mom ER neg 1988, still here, no recurrence.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Galina2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2008 at 5:49pm
Yes, Jessie, I have the same experience.  After 4.5 months waiting for chemo, I have pushed and pushed and finally got an ONC. He told me I should not be worry, I still have 1 month window to get chemo!! I could not believe they left me to wait so it was almost too late! I was supposed to wait just for the ONC first appointment for another month!
Just push girls, push!!!!
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2008 at 7:39pm
 Window for Chemo, never heard of such a thing.Cancer is a lifelong battle, there are no windows.You go from one to another until one works.
It is exspensive so maybe thats an issue if your from another country.
I had one that was 150.00 pill per day.I may be going on a new one just out that is 7000.00 a treatment.
 Breast cancer is a slow growing disease, but the sooner the treatment the better life quality.
You desearve the best out there as quickly as possible.Dont let them play the waiting game.In some areas your just a number and a name.Dont let it happen.
jill
I work in the medical profession and if you need to see a dr, just show up and tell them you had a call confirming your appt.They will see you.
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Netterz Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2008 at 7:57pm
Wow, I have never heard of this. I have heard about the wait time in Canada being long, since switching to a national health care plan for other things, but have never once heard anything about a window. My new Onc is sending me back for more chemo after I finish Rad, because she feels my old Onc did not attack it agressively enough to help me avoid afast reoccurence. I dont understand how they can place a'window' on it, since many ppl dont even know they have cancer, until it shows up as a problem with something else they have been sick with. Some have cancer for a few yrs before they are actually diagnosed. I guess this is something over my head, but I intend to ask about it when I go in. I also wonder why they radiate to the lifetime amount, when they seem to know there is a good chance of re-occurance. I keep forgetting to ask, why because we usually end up talking about the reasons for it, how its working, and what my blood work is showing, etc. I usually have a list ready, but I end up leaving it at home, just like I do with my grocery list and coupons. LOL

Edited by Netterz - Feb 10 2008 at 7:58pm
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2008 at 6:08am
CarynRose,
 
I devoted my weekend to reading "I Am Not My Breast Cancer" --- it was such a wonderful experience for me !!!!!
 
I had the weekend to myself.  I put on a pot of pinto beans and settled down in my favorite recliner with my favorite blanket and cup of coffee.  In no time I was right in the midst of a wonderful support group.
 
I hope you know what a contribution you've made to all of us in developing this book.  It is a MUST READ for all breast cancer patients and all those who treat and care for us !
 
Thank you so much for the book,
Hug
Jessie   
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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