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Jennine
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    04/20/09 at 01:29 PMReply with quote#1

Hi everyone,

I'm Jen and I've (as you've probably guessed) have been diagnosed with IDC TNBC on March 25,2009. Yep, it's true and I can finally say it and believe it.
I had a lumpectomy on April 10th with a SN biopsy (wow that hurt!) Turns out that my tumor was 1.8 cm Negative nodes and clear margins.
The surgeon told me although my cancer is Stage 1, I would still need aggressive treatment because of the grade of tumor and because I am triple negative. Wow!! Of course!! Why would I do anything easy...nope, not me. I've always had it tough, always struggled, my whole life, but most importantly, I have always survived.
Gina, I live on Long Island too. I was born in Flushing, Queens (just like franny the nanny) and my parents moved us here when I was 8. I never really loved the Island partly because it's so crowded and I hate the long winters. My family moved down to Florida over 10 years ago and man..did I want to go with them. But I couldn't, I couldn't because of all of my responsibilites, my family, the life I built.
I am now 44 years old. I've been married for over 20 years to a guy I met when I was 17. He is 6 years older than me, but it didn't matter...we were always so close, like soul mates. We have three children 19, 17 and my baby is 13..my boys, my treasures, my gold. I couldn't move and up root their lives, not yet, not at this time..so I stayed, we stayed ,but I was never really happy being here without my extended family.
I worked, sometimes full time, sometimes part time. I went back to school..but honestly, I tend not to finish what I start when it comes to career or school. I haven't yet found something that makes me truly happy, work wise, career wise. But my family..that has always been my greatest joy, taking care of them, being their mom, I have always felt fulfilled being a mother..everything else just seemed to pale to that, and I mean everything.
So, we stuggled, year after year, but we made it and the result, happy, healthy kids..so it was all worth it.
Now this, this cancer thing...this is a whole new chapter. I have always been healthy, I don't know how not to be healthy. But I know I will and can handle this, even though I am less then thrilled about it.
I read your posts Gina, not all, but some. I am inspired, by you and all the other ladies who have walked this path. Thank you, from the bottom of my heart for sharing your life experiences. I am more then humbled. I think like you do and I simply love your attitude. You are like a ray of sunshine and when I am having a bad day or get confused I will turn to your posts, they have helped me.
My sister found this site. When I told her about my DX she was very upset. More upset when she couldn't find many positive things about TNBC. Then she found your website and called me. I see the light..

Thank you for being you, for all you've done, for all you will continue to do..

Love, Jen

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A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
DoreenF
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    04/20/09 at 02:22 PMReply with quote#2

Jennine - welcome and  I'm so sorry you had to join us here (we really would like to stop adding new members to this club as it would mean no more people being diagnosed with breast cancer) ... but I'm really happy that your sister found Gina's site that is filled with information, support and most of all HOPE! 

It's fabulous news that your nodes were negative !!   I love your attitude and spunk and look forward to getting to know you. Have you seen an oncologist yet ? Do you know what chemo cocktail they are recommending for you ?  Are you seeing someone who specializes in triple negative breast cancer ? 

Gina's posts are wonderful ... I love reading her posts - she can really express herself well and oh so clearly.   She is such an inspiration to all of us here.

Let us know how we can help you!
Love,
Doreen

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"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto.
SapphireSky
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Registered: 04/16/09
Posts: 83

    04/20/09 at 04:17 PMReply with quote#3

Hi Jen ~ I am a newbie here, too.  I just joined a week ago on the day when I received the results of a biopsy and was diagnosed with BC a second time.  I have found everyone here to be friendly and comforting, and that is still unbelievable to me because we are really all strangers but drawn together on the internet by this one thing in common.  That has to say a lot about the women who post here.  

I am inspired by your story and your attitude!  Great news about negative nodes and clear margins!  



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"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
Jennine
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    04/20/09 at 04:19 PMReply with quote#4

Hi Doreen,

I haven't seen an oncologist yet but am scheduled for April 30th. The team of doctors that I have all belong to the same group and I am going to try to stick with them. So far I am happy with most of them. From the very beginning, with the exception of my GYN, they have all been on top of me making sure everything moves quickly. When I visit with the Onc I wil ask him about my triple neg. If he does not specialize in that area I will find an onc that does. I am still healing from my surgery, it's only been a little over a week.
The surgery, even though I had a lumpectomy was tough. The lump was on the side of my breast and he had to do the SN biopsy that same morning (that hurt like hell!!) not to mention the fact that I was suffering from a full blown migraine, so the day was torture.  The tumor was very close to the nodes so he didn't drain my breast or the lymph nodes because it would have deformed my breast. So the doc told me it would take longer to heal. My boob is so bruised, swollen and numb but it will heal.
I am so worried about the chemo treatments. The more I read Doreen, the more terrified I get. I am one of those people who eat organic foods (mostly) , take supplements, exercise (but not lately) and just take care of myself all around. Now I am faced with poisening my precious body. I know you know how I feel and I don't like the thought of anyone taking chemo but seems to be all there is at this point. I almost want to run for the hills. ha ha ha but I won't, I will be brave, like a good little girl. ;-)
I know I'll cry, I know I will need support, and I know I'll need you all to talk to and to guide me.
Some days I'm gung ho to get this done and over with and other days I'm ready to high tail it!! Know what I mean??
Please any advice will be welcome with open arms and an open heart..


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nosurrender
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    04/21/09 at 03:00 PMReply with quote#5

Hey Jen!
Welcome!!!!
I am sorry you have to be here- but sure glad to meet you! And you are a neighbor to boot! How cool.

I want you to remember one thing- this is the WORST time of the whole journey. Once you get your plan in place and you know what you are going to do to beat the crap out of this cancer, you will feel so much better.
Right now, take things one minute at a time. Don't project too much into the future because you will make yourself crazy. I know- I did it!
We have a very similar diagnosis. My TNBC diagnosis was almost EIGHT years ago. So don't pay any attention to the gloom and doomers who tell you because you are TN you shouldn't buy green bananas anymore!

Who are you going to use? I can give you lots of recommendations for the area.

You are home now. We will take care of you. Don't worry about a thing.
I mean it!

big hugs
g


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Jennine
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    04/21/09 at 03:47 PMReply with quote#6

G,

I am with the Winthrop group, here in Nassau County. Dr. William Reed (head of surgery at Winthrop Hospital) was my surgeon. I love him! They referred me to the oncologists within the group. I haven't seen one yet, that will be next week. I originally wanted Dr. Montelone (do you know him? many do) he is, I hear, the best for breast surgery..but unfortunately he didn't take my insurance. bummer...but Dr. Reed was/is awesome too. It's going to take me a while to heal because he didn't drain the nodes or my breast..so ouch, it still hurts, but getting better.

Let me know of any others in the area (onc) I will look into it.
Hopefully who specialize with TN. Thanks Gina

Love, Jen


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A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
kmobley
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    04/24/09 at 12:58 AMReply with quote#7

Glad to meet you Jen,

I work and get behind reading messages.  Just saw your message.  I too am IDC, Triple Neg., Stage I, Grade III., 1.8 cm. and was diagnosed on Jan. 14, 2009.  Had lumpectomy on Feb. 17, 2009.  Had Mammosite radiation and now taking A/C which will be followed by Taxol.  I had my second treatment today.  Believe me, these ladies you have found here are so helpful.  When I started chemo, I was experiencing some different body effects.  The ladies here can help, believe me.  Just ask. 

Hugs,
Kay 
Jennine
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    04/24/09 at 04:08 PMReply with quote#8

Hi Kay,

I am going to an Oncologist next Fri. the 30th. I already have a second opinion lined up. What is the type of radiation you had? My sister just sent me something on a new type of radiation for women with stage 1 breast cancer. Here's the link:
http://www.yahoo.com/s/1061565
Is this available to all of us? I don't know yet

How are you doing? How was your treatment?
I love this site, mostly because the energy here is so positive, not to mention the wealth of information, and Gina, well, she speaks for herself.  and it was just what I needed. I want to help others too, anyway I can.

Love and faith...always,
Jen

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A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
Limner
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    04/24/09 at 09:25 PMReply with quote#9

Jennine, you seem like a strong, clear-headed woman.  I was under the impression that women like us didn't get cancer, so what a reality check that was.  Well, maybe we aren't immune to cancer, but those attributes help when it comes to the the medicine for it.   It is truly wonderful that you have such a big support team in your family. 

The weirdst thing for me was that this disease showed up when I felt most aliented from my "previous" life.  I had an antique home I loved, a busy life full of friends at grad school; then hard times, sell the house, empty nest, seek employment - and a big move back to FL where I grew up but don't like, kind of how you don't like LI  - I love NE and lived there for 30 years, but I came back here to get a real job.  So I got the real job and the health insurance, and cancer, too.  I do have a dear son here, who is there for me, but he is of the opinion that one "thinks" their way out of "challenges" so I do appreciate his love - I just needed some empathy, too.  My three sisters are all over the country, I had to give away the love of my life, mi corazon Jubal Lee, a big Chesapeake, I could not handle him, and work and two cancers, and chemo - he is with a sea captain, and I am jealous - but my heart broke, what else can be taken?  I was pretty damn desolate - not depressed, but desolate in a very clear-headed kind of way.  And then I found Gina's site NO SURRENDER - and the very real men and women behind the site.  Truly a God-send.   In every real way, I had people to share this experience with me on a day to day level and have been so blessed by their wisdom.   Even now, finally free of 6 months of chemo (also AC+T), preparing for the radiation in a week or two, it is to this site I come to recharge - I worked all day, but I am weak.  

You have plenty of time to read Edge's generous posts about 3N treatment options, and even more time to learn about the radiation.  Oh, and enjoy your hair!  What a simple pleasure that is -                     
 
Gina, you make this feel like a wilderness adventure - sure there are bears and steep drop-offs, and the danger is real- but we've got each other, a map, lots of supplies and some great campfire stories -

Even on LonGiland -  llllove, Mary 


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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender
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    04/25/09 at 08:54 AMReply with quote#10







You guys are the ones who make this place soar....
Thank you so much for the kind words-
we are family~we stick together forever
Love you
g


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CherylG
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    04/25/09 at 03:07 PMReply with quote#11

Welcome Jennine
I didn't have TNBC but I did do the chemo and rads. I have to tell you that you have found the best group to help you through this. Just ask about even the smallest problem and someone always has an answer. When we don't have the answers Edge steps in and tells us what we need to know. We will get you through this.
Hugs
Cheryl



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Jennine
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    04/26/09 at 10:31 AMReply with quote#12

Thank you Cheryl,

I am so happy I found you all! So many have helped me already! I feel truly blessed that I found this site. I want to help as well, anyway I can. The more I learn, the more I can help others.

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A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
SoCalLisa
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    04/26/09 at 08:43 PMReply with quote#13

Welcome to our group, Jennine

I think taking one day at a time is a good way to approach our journey..maybe even one step at a time..you have found a good place here that Gina has built..and thanks to her we all have a circle of helping friends..I graduated from High School in Chappaqua New York, not far north of NYC..and now we live in San Diego..

I didn't have triple negative either, but did have a mastectomy and chemo...

Gina...here is a map of the new world made by Juan de la Cosa, who was a compatriot of Columbus..it hangs in the Spanish Navy Museum in Madrid and we have a copy framed in our home ( from our living in Spain days)




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ChrissieD
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Registered: 02/02/09
Posts: 148

    04/26/09 at 10:43 PMReply with quote#14

Hi Jennine and Welcome,
I hope your meeting on with the onc on the 30th goes well.  The important thing is to ensure you feel comfortable with him.  I really like my onc even though he is not a TNBC specialist per se BUT...the protocol given to me was from a major cancer center with which I had a 2nd opinion with a "famous" TNBC onc. 

I too was stage I and was beside myself when my onc told me I needed 8 cycles of toxic overload (said to the girl who hates to take even and aspirin!).  I drank a lot of water to flush it on out!!

As Gina said, you are going through what is likely the most difficult part of this crazy ride.  You will be amazed at how much strength you will muster to make it through...and you will. Cling to the blessings that are all around you...and here!!

All the best,
Chrissie
Jennine
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    04/27/09 at 10:51 AMReply with quote#15

Chrissie,

I must admit, I'm getting a little nervous approaching treatment. I don't have a treatment plan yet, but getting closer. Everyday I am enjoying feeling good, healthy and all of the other things I tend to take for granted, including, brushing out my long, thick, dirty blonde hair.

My father has been chronically ill for over two years. After his triple by pass he never recovered. He was diagnosed with MDS (a blood disorder) to sum it up, his bone marrow is not working. It's not cancer, they call it "pre cancer"
My dad has blood transfusions at least once a week. Now he needs platlets and other meds to counter act the excess iron. He had to have chemo, but it didn't help him. He had a port, then developed an infection, then, had the port removed. He told me yesterday he must have been stuck over 200 times since his diagnosis.
When he told me these things it took all the strength I had to hold back the tears. I hate that he has to go through this, I hate it.
I was afraid to tell my parents about my DX. My mom has been through so much with my father, I didn't want to put the extra worry on her. But I knew if I didn't tell her, she would have been very upset with me. So I did, but it broke my heart.
My father has always been like Hercules to me. I am the female version of him, I look like him, have his temperament...and so it goes..
The two us are going through similar experiences, (emotional, physical, fears) not pleasant true, but I wonder why? I spoke to my dad yesterday, he can be a real sage when he wants to be and he really made me feel better. He told me, don't be afraid,  you do what ever you have to to, and God will take care of you. :-) 
 Oh, one more thing, he told me, despite what I went through, Get a port! What happened to me, WON'T happen to you.

My dad had always been his own man, a strong European, a stubborn Greek.  He never took anything, including asprin. I know this has been hard for him, but yet I admire him for enduring it all. He offers words of wisdom to his daughter, even if it hurts him to even "go there" with me..


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nosurrender
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    04/27/09 at 07:33 PMReply with quote#16

What a beautiful tribute to your dad.
He sounds like a wonderful man.
You really CAN get through this... please trust me about this.
The IMAGINING it is far worse than the actual doing.
It is all part of the fear of the unknown.
I am going to post my hair pics in a second.
I just want you to know that we are here for you through every step of the way.
Lean on us.
We have all walked the path you are on... we'll show you the way.
Love
g


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LRM216
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    04/27/09 at 10:41 PMReply with quote#17

Jennine and Sapphire - welcome aboard the trek none of us ever planned on taking.  This is a wonderful site and I am so glad I found it - you both are in the right place.  Loving sisters on this site and they have helped me bunches.  I was diagnosed on 2/23 - had lumpectomy (no pain, no probs), clean nodes then re-excision for clean margin on 4/8 and am still suffering from it.  Had my port put in today all my testing other than a bone scan tomorrow, has been done and I start my chemo on Thursday.  Having AC+T.  I had 1.2 cm IDC in right breast - triple n.  Am a former Long Islander (life long resident of Huntington Bay) that moved to Marietta, GA 22 years ago.  Lost my hubby at age 45, exactly 12 months after moving down here, but life has been good to me and my two daughters (until this sh*tty diagnose).  So I am really not that far ahead of you and have all the same fears and trepidations with being triple n - but there are many out there surviving and living their lives again - just have moved on from the sites we so desperately need at this time.  Good luck, much prayers to all on this and all other breast cancer sites, and may we all continue to thrive.

Warmly,
Linda

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nosurrender
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    04/28/09 at 09:46 AMReply with quote#18

Hi Linda!
Welcome aboard
I am so glad you found us.
You are from Huntington Bay? That is a lovely place.
I am so sorry about your husband. You have been through a lot.
You will make it through this too. We will make sure of it.
hugs to you,
g


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Jennine
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    04/28/09 at 11:09 AMReply with quote#19

Hi Linda,

I'm glad I found this site too. I have learned so much already. I am preparing myself, best I can, for what's ahead. I have been trying and doing a pretty good job, taking this one day at a time. But I need to educate myself too and there is so much info here, it's truly a gift. 

Gina,
Thank you. My dad is wonderful, he always tried to do the right thing, all of his life. I admire his strength, and although he's been through the mill, he holds himself with great dignity. I am so proud of him.

Love,
Jen

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A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
Jennine
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    05/01/09 at 12:47 PMReply with quote#20

Hi all,

I wish I could say I'm having a great day, but not really. I've been going to Dr.'s and they all basically say the same thing. I am having 4X DD AC then 4X T. Honestly I am not thrilled about it, not at all. The oncologist tells me there is a 40 percent chance my periods will return. What a nightmare..on top of dealing with bc, I have to deal with chemically induced menopause, great. I know every woman is different, I know, but I can't help but think of all the side effects, some long term. I actually thought of NOT having chemo and when I brought this up to my docs, well lets just say they don't agree with me, at all.  One of the oncs actually expressed how disappointed he would be if I didn't go ahead with further treatment.
It's the stats, the numbers they were throwing at me. Like, 82 out of 100 women will survive this with NO further treatment. 16 will die of it, 2 will die of other causes. Then with treatment, 9 out of 100 won't make it. So, the numbers are not that great with additional treatment but they ARE better.
I ask myself, do the benefits out weigh the risks, and the risks are many..
When I bring this up with my husband he just gets mad and walks away, he does not want to even hear say maybe I won't do it. My good friend Richard does not want me to do it...my sister, mother, aunt, family, do..
It's up to me..
I guess I will do it because it will increase my odds a bit, I guess better then nothing, but it's still not great.
I hope and pray that I am making the right decision.
But, I will say, I will be going to my first treatment (next week) not smilin...

The docs, nurses and everyone else tells me, "You'll be ok, no big deal, lots of women do it" Oh, and I love the nurse at the oncs office who tells me I am reading WAY too much on the Internet and to stop! ha ha ha funny...so I should just be ignorant and not know about my DX and not have any idea about my treatments or anything else for that matter. I suppose I will leave my life in the hands of everyone else. Yeah, sorry, not me.  I wish one person there would tell me that my feelings are warranted, you have right to be pissed and I don't blame you for feeling this way. Just one person... because to me, this IS a big deal.
Oh, my sister tells me she does not blame me, she understands and she would feel the same exact way, bless her heart, she understands me.

Crabby, but still hopeful, ha ha ha

Jen

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A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
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