Message for the long time surviviors...

Chelee · 11-23-2007, 01:55 AM

Thanksgiving had me thinking of the many things I'm thankful for. One thing I would like to share here is how very thankful I am for the women like "Christine, Audrey, Patty Z, Michele U, Tricia K, Shelia, Kim in CA, StephN, Irene, MaryAnn" and the list goes on. (There's many more!)

I personally appreciate you long time survivors sticking around and posting. I think its so important for the newly DX and the women like myself that aren't that far out to see that life can, & does go on. You all play such an important part in our lives rather you know it or not.

There are so many women that go through their trt & they disappear from the boards and I *do* understand that, and can totally respect it. But thanks to all of you that choose to stay...it means alot to me...& I'm sure the other women feel the same way. I know I appreciate it more then you could possible know. I seriously was without hope when I was DX...my cancer center was so negative. They made me feel like since I was her2/neu I didn't stand a chance. Thank God I found this board & all the wonderful women on here. But I felt the need to give the long time her2 survivors a very special thank you. Thanks for sticking around...I really appreciate it.

Chelee

Sheila · 11-23-2007, 06:44 AM

Chelee
It's nice to be referred to as a long timer...thank you! Everyday when I log in to this site, I learn something from someone....this board has been a lifeline to me for several years. my only hope is that along the way, I have been able to help others as they have helped me on this journey. The sad part is, the longer we are on the board, the more angels we have, in the sisters we lose...each time I see a new person post, I notice how the treatment has changed since I was diagnosed! It gives me hope that there will be a time when this board is no longer needed!

dhealey · 11-23-2007, 06:50 AM

I agree with Chelee, I am ever so grateful for the long time survivors that still post as you are an inspriation to us newcomers. Please continue to give us your knowledge and push to keep on living each and every day. You give us hope and without hope there can be no life.

SoCalGal · 11-23-2007, 10:07 AM

I am curious - how many of us are living with mets?

It seems there are many miracle stories on this board and it is indeed comforting and hope-filled to see that "chronic" cancer does exist and while extremely UNPLEASANT (that's an understatement) it IS possible to live with METS. That is the hope I get every time I log on. Everyone here has a nightmare list of treatments, surgeries, procedures, chemos, consultations, idiot doctors and fantastic doctors. That is the norm, hard as it is to believe.

When I was going through my worse cancer times, in 2002, the question I asked most of my doctors was "is it possible to have what I have and actually pull through?". "Can I make it with this...infection, low blood count, cancer spread, radiation poisoning, etc.?" I really did not know if the human body could go through what they were doing to me and actually survive. I wasn't even thinking about the cancer at that point - just trying to survive the treatments and feeling terrified that I would die from them.

When I first came to this board, in reading everyone's signature and history, for the first time I felt that I wasn't alone - this laundry list of things is "normal" in cancer-world. SUCH HOPE IS HERE. The website should be renamed Her2HOPE. I was just wondering how many of us are living with mets?

Hope you are all out bargain shopping today - Lots of love and appreciation for this website. Especially to Joe and Christine for making their vision such a vital reality that so impacts my life. ~Flori

Jean · 11-23-2007, 10:08 AM

wonderful post. The sisters who are "long time surviors" (love that title) are so generous with sharing their treatments, trials and knowledge, even while they are not feeling their best, offering options to others while they are fighting so hard. It is a gift of pure love and courage. Yes many come and go on the board, or only touch base when they have a question to follow up. It reminds me of a strong tree with powerful roots. Those who touch base or come and go are like the seasonal leaves that grow on a tree. Then there are the branches that grow from the strong tree.
Our long time surviors are our strong tree. God Bless each and everyone of you.

With Gratitude,
Jean

hutchibk · 11-23-2007, 11:41 AM

I would like to add two ladies to the list: FLORI - 11 years of kicking butt... and Andi BB - 12 years thriving and surviving. Thanks to all the ladies listed for teaching me that we can live long and strong. BC be damned.

caya · 11-23-2007, 11:50 AM

Add my thanks to all the long term survivors out there who continue to post, update us with information and offer words of encouragement. As a one year survivor, I can only echo the words of the others - I appreciate your commitment to this site.

all the best
caya

Audrey · 11-23-2007, 05:11 PM

Hey Chelee, it was so great to see you mention your gratitude toward long-time survivors posting...I was seriously thinking just today that I would try to close this chapter of my life and stop hanging around this website. After all, it has been six years since my diagnosis already...but then I remember what a lifeline this place was for me and how I've come to care about everyone, and I need to check in and see how everyone is doing. It's a hard habit to break!
Anyway, just to give you all a quick update, I went to see my onc. last week for a six-month check-up and everything looked okay. She told me "you know I think you're all done with this cancer..." Which is so significant coming from her, since she never had a positive word for me at the beginning (before Herceptin was proven to be such a good drug). Now I will only go every year (unless I have symptoms, of course). The thought that I might be c-u-r-e-d (I feel like I will jinx myself if I even say the word) is so unbelievable to me since I had a 15-cm tumor (!) 11 positive nodes (!) and every other possible indicator for a poor prognosis. I'm proof that these treatments can really work (I even had a bad attitude most of the time and was certain that a recurrence was inevitable). Never give up hope! I know it seems like we read often here about those who lose the battle with this disease, so I will continue to check in here and send out my prayers and support for all my bc sisters.

Kim in CA · 11-23-2007, 05:13 PM

Dear Chelee,

I agree with Sheila, it's nice to be called a long time survivor. And Jean, I LOVE the strong tree analogy!

I am so thankful for everyday and still have to pinch myself sometimes to realize how far I've come. I don't post as often as I used to, but part of that is because I am busy trying to sqeeze the most living out of everyday that I can! I will never leave this board though because it is truly my life line. I never take for granted (not even for one day) that my good fortune could change at any time.

I am proud to be part of the greatest support group of all time!

Love, Kim

PS: just had my MUGA and Brain MRI today and anxiously waiting for the results. Keep those fingers crossed that those brain mets don't come back! I like having nothing in my brain !!!! :-)

Soccermom · 11-23-2007, 05:15 PM

I'd like to add my appreciation for the "long-timers" who treat newcomers with love, concern and good solid information ! I have seen survivors who become so embittered that they are unable to reach out that helping hand ,graciously, but rarely have I ever felt that here.

Thank you for posting this,Chelee!

Warmly,marcia

TriciaK · 11-23-2007, 06:03 PM

Thank you for posting this thread and for including "TriciaK" among the long time survivors who have been a part of this website. There are two of us called TriciaK, me from Utah and TriciaK from Ireland, and we are both survivors! I don't post as much as I used to but I read the messages at least once or twice a week, and my thoughts and prayers are always with each of you as we continue our battles. In December I will have my 6-months tests, including a CT/PET scan. This is the longest I have been able to go without testing in the three and a half years since my third BC mets showed up in 2004, and I admit to being a little nervous about the scan next month. It's been 22 years since my first BC in 1985, so it's been a long fight for this battle-scarred soon-to-be 78 year old warrior! My spirits and faith are still strong, even though I am now fighting cardiomyopathy, heart failure, fibromyalgia and severe sleep apnea, too! My husband and I spent Thanksgiving with our oldest son's 27-member family, and I can tell you the hugs from those dear little great-grandchildren make it all worthwhile! I will post the results of my tests next month, and I will keep reading your wonderful courageous messages and praying for you. I will also be glad to answer any questions any of you may want to ask me about my treatments, experiences, thoughts and so on. Hugs, TriciaK

Andrea Barnett Budin · 11-23-2007, 06:09 PM

So I guess I'm a long timer, and a bit of an old timer, which is a very good thing I've learned. It's all about having more birthdays. And sucking the marrow out of each glorious day, never to be taken for granted, not even when you get to where I am, 12 yrs after orig dx. (Oh yeah there was that episode in '98-'99 that was as close to death as I could imagine.) Then, after 9 mnths of Taxotere, on my knees, with a pleural effusion and a peri-cardial effusion and a tongue that weighed about 50 lbs, I had a 3rd radiologist read my CT scans and say, I don't think what I'm looking at aren't tumors, but rather the dead remains of tumors. Necrotic tissue. Cyst-like. Filled w/fluid. Dare I believe???, I thought...

And I said to one of my (5) oncs, What does that mean?! Slowly, he smiled and said glowingly, Well, I guess we can say -- YOU'RE IN *CAUTIOUS* REMISSION, his hands out, palms up, like TA DA...

I read every spiritual, uplifting book I could find. I ingested them, highlighted and underlined them. My husband and I kept abreast (no pun intended) of everything remotely related to bc, including the discovery of the HER2 gene and the development of Herceptin, which came in handy while it was still in clinical trials and I metastasized throughout my liver. I knew to ask to be tested for HER2. I knew to apply immediately to get in to a clinical trial. And I knew to hold on to my evolving beliefs in the power of our thoughts and the bodymind connection. I was well armed. While being shaken to my core. My prognosis was dire. One nurse who remained in the examination room after the doc left, threw her arms around me, her chest heaving and whispered in my ear -- I'm going to pray for you! My docs now call me a miracle patient. The nurse at the mammography center looks bug-eyed surprised and delighted to see me return each year... I'm going to stick around just to see that expression on her face again and again! It makes me feel gleeful...

In '05 I joined this site, not so much to look for support as to be supportive to those who are on this difficult journey. I feel compelled to give back, to give God lots of reasons to keep me around, to (I know this sounds really weird but...) to fulfill my contract with the Universe, to share the Lessons I've learned for the benefit of all. I know that is my mission in Life and it gives me the deepest joy to serve that purpose! As it turned out, I fell in love with this incredible lifeline for so many, and with the Sisters I found here. Many have become friends. My admiration and awe at the courage, knowledge and strength of the special women here never seems to stop expanding. You all amaze me. You touch my Soul. And I carry thoughts of you all, along with prayers for each and EVERY ONE OF US (those who are caught on this roller coaster and those who are dubbed long time *survivors*) with each day. Safer to be here in remission, but never home free. Yet fully intending to stick to the 50 year plan. I know others who are *living with mets* and work every day to remain *stable* (yes, Flori). It can be done. And they, and we all, can live with joy and serenity midst it all, if we really really work at it. Oh boy -- it is a full time job! Not easy. But doable. And so worth examining every unimaginable avenue to achieve it. Just stay open. Live with an open heart and an open mind. That's one of my favorite mantras... If one person can do it -- so can YOU! No one appreciates Life more than a cancer survivor. And from the day of diagnosis, we are each on the Survivors List...

With loving, healing energy to you all, as always,
Andi

vickie h · 11-23-2007, 06:54 PM

Hi Chelee, So good to hear from you. May you survive ( Live well) for many more years to come. You have always been such a sweet sister. Love, Vickie

Bev · 11-23-2007, 09:40 PM

Good post Chelee. I sometimes wonder why some of the propellor heads hang around but am glad they do. I sometimes think it's time for me to move on, but like others, I want to give back, because I know how hard it is in the beginning. And I'm nosey too. If they found a cure tomorrow, I'd rejoice, but I'd miss you all. Bev

pattyz · 11-24-2007, 07:54 AM

Flori,

When I was 'new' to bc, back in 2000, I was an active member on first two, then four bc support group/sites.

Into my first yr of mets, I found I needed more. More hard information, more first hand life experiences in living with mets. More real understanding and true empathy. Not pats on the back and 'you'll overcome this.' etc. Less 'fluff', more reality.

Though I still visit three of those first groups, I now 'belong' to my bcmets.org group.

Having mets is different. Or has been, for me.

There are issues of 'survivor guilt' after having mets for this long, losing one dear sister after another, month after month, year after year. There are issues of chronic, disabling fatigue. Multiple long term side effects. Issues of 'putting affairs in order'. When to call in Hospice. What to leave as a 'legacy'. Decreasing options of treatment. and on and on. I find what I now need with other metsters.

But, that's just me. I realize many, if not all of these 'issues' are inclusive to all dx'd with bc at some point.

Warm wishes,
pattyz

sarah · 11-24-2007, 08:10 AM

chelee what a great post. I add my thanks to everyone on the post for their support and information and let's not forget those great guys!
sarah

IRENE FROM TAMPA · 11-24-2007, 09:10 AM

for your kind words....

and never forget that we are ALL survivors no matter what.

Have a wonderful day my friend.

tricia keegan · 11-24-2007, 10:27 AM

Here's another very grateful short term survivor who would like to say a huge thank you to all our long term surviving sister's who give us so much hope and made me realize stage iv does'nt have to be a death sentence.
Tricia K from Utah I hope I 'm as couragous fighting this disease should it ever recurr as you have been and still are. Ladies don't ever go pleease

Great idea for a post Chelee, it's nice to have the chance to tell these ladies they are very much appreciated and applauded by us all..

StephN · 11-24-2007, 12:28 PM

Dear Chelee (I have a sister named Shelley) -

Very thoughtful of you to post such a nice note of appreciation for the earlier members of this board who stay and try to lend a hand to the newcomers. And not forgetting newcomers who are survivors who have found us more recently.

As a "metster" I have some of the same thoughts as Pattyz, but prefer not to dwell on end of life issues at this point. My interest is in advances for Her2 and the new research and drugs. So I continue to be concerned how participants here are doing on their various treatments no matter what their stage. Thus I tend to only lurk once in a while at other sites and stay active with this one.

Am glad to put in my 2 cents worth if it helps someone else feel better about what is happening to them or make a decision.

madubois63 · 11-24-2007, 03:27 PM

Chelee - I am choosing to believe the "MaryAnn" you listed is me. I spell my name "Maryann," but answer to Mar, mom, and just about any version of the name. This January, it will be 8 years since my original diagnosis, but I feel like it's been a thousand since those horrible words were first spoken to me. I am sure I do not need to repeat them to anyone. You all know the words I am speaking about. It has been a very hard road for me, but somehow I have managed to have a very good life along the way. And don't think that just because I am facing bc again, that I have stopped living. Wednesday, I spent the day in Manhattan with my daughter and her friends. One of the mom's and I spent the day walking everywhere. She's not sick, and she was more tired than I was. Later in the evening, we went to the concert that my daughter had been waiting in line all day to see. I didn't have a ticket, but worked my way in anyway. The next day, my family and I traveled to Connecticut and had a great day with my 3 year old nephews. I should have been worn out by then. The following day, my daughter and I drove to Massachusetts (from Conn) and spent the day at another concert. We got home at 3 am this morning. I did sleep late today and besides doing laundry, I just sat around watching movies all day. Anyway, after beating bc the first time I went back to sleep in my old life and didn't think about cancer until it kicked me in the teeth again. I wish I had known about this site then. I could have been better prepared. I never expected leukemia, but at least I was aware that it could happen thanks to this site. I was not expecting this bout with bc again, but I am better able to handle it with all that I have learned and all the support that I have been blessed with. I do believe it is only fair that I try and return the favor...