Calling all TNs
Comments
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LuvRVing - congratulations on getting in on the trial. It sounds promising that it's specifically for TN. Fingers crossed it works and wipes out the nasty beast!!!
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Luv - I'm so thrilled to hear this good news. I know you're "one in a million", but in this case, 1 in 26 is even more special!!!!
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((((Inmate)))) So sorry but I know you'll find the right chemo! Joining in the chorus. F(*&K CANCER!!!!!!!
Glad you found a trial Luv.
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Inmate I was so sad and angry when I read your post. As kind as these doctors are its time they got their finger out and came up with the right treatment for you. You have courageously tried everything so far with so much optimism and hope and it is time this cancer was kicked to the curb. Your strength has helped all of us and I know you can beat this again. I can't even swear at it anymore as it doesn't seem to hear us. I know you will go on a trial and this time the sucker will be put to rest once and for all. Thinking of you with love and tears and sending the biggest hugs you have ever had.
Get a little dog like that one in the picture, your hubby will love it and it will give you something extra to fight for.
As for Mandy she went for a biopsy and the radiologist that did it said it looked like a haematoma that has been there for a while. It kept moving around and she had trouble taking the biopsy. We will get the results in a week. Makes me so mad we have to keep waiting but still keeping my fingers crossed. I have made several bargains with God so I hope he hears me.
I have come home from radiation with a rotten cold and I feel gastly so I'm going to bed. Blessings and heaps of love to you all. Annie xxxx
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my little chap after his ear op. 0 -
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Bernie, hope the poor guy heals up fast, I hate to see them hurt. What was the operation for?
Stupid laptop, I had this whole thing typed out and I hit the wrong button and it all disappeared.
Just wanted to say that I'm thinking of all of you.
Had to call and make an appt to find a new oncologist and get my port flushed yesterday. Damn anxiety, I was freaking out by the time I was done, should have brought my xan ax to work with me.
Hubby and dogs will be here in 2 weeks. Hubby's being an ass at the moment but I know it's because he's so stressed out with the move and our being apart for so long, then he's got to look for a job. So I'm trying to be understanding and instead of using a lot of colorful language and saying what I really want to I just hang up. He's going to find himself sleeping on his sisters couch alot if he doesn't get his sh*t together. Maybe, he'll be sleeping on her couch, my SIL and I have been calling him a drama queen and he's acting just a crazy as his mom. I bet she'll ship his a** up there. Thankfully, we all live within a half mile of each other so he won't have too far to go.
Today, I'm cooking dinner for my Mum (nickname for my second mom), she just had surgery to remove a lump on her tounge, it's out for biopsy now so I'm waiting nervously but first I have to go buy a gift cert for my niece's birthday. She turned 21 yesterday and they are having a little bbq tomorrow. AND, I'm treating myself to a mani/pedi so I an wear nice shoes.
Hope everyone has a good weekend.
Big hugs to everyone!!
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BTW, Bernie, is your picture before or after treatment? It looks fantastic and straight, very envious. I sort of like my hair and if I can pull some of the curl out I really like it but my God, I did not expect to be such a poodle head!
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Luv - woohoo for getting in that clinical! That is pretty exciting and so happy it will work with your Hawaii trip! ALOHA!
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Inmate - tons of prayers and love coming your way for all things positive.
Luv - so happy for you that a trial has been chosen - one step closer to taking this beast down.
Annie - what a horrendous rollercoaster you and Mandy are on. Keeping everything crossed that this will be just a nasty memory real soon. I know only too well how hard this is on both of you.
Mags - congrats - keep on keeping on!
To all: sending positive vibes and hugs to all -
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I have a question. I keep getting mail from Living Beyond Cancer Org. inviting me to register for information teleconferences. Anyone else getting these mailings? And if so, has anyone sat in on one of these teleconferences? Just curious....
Navyson coming home for 5 days....last time for quite a while. He will be deployed in November. CS, I am doing a little bargaining with God, too. Hope he is listening to all of us.
Have a peaceful weekend ladies.
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Navy: I'm on their mailing list - I've sat in on two teleconferences, one of which was TN. Can't say I learned anything new.
Luv: Thrilled that you got in on that trial - you will be followed very closely, which is a benefit all on its own - and then hopefully the drug will be the magic bullet.
Minx: Ditto what Luv said; a local recurrence is not considered stage 4.
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Luv so happy you got in a trial! I hope it kicks cancers butt!
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(((Inmate))) - hope you had a fabulous zoo day. And speaking of clinical trials, have you looked into them? There should be some options near you - you're in Seattle, correct? Gotta be a big cancer center with some promising trials. Like Luah said, the additional testing makes it very worthwhile. And most of the drugs out there being trialed have already been tested with other types of cancer. So it's not a total "shot in the dark."
Navymom - I'm not being contacted by that organization.
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Luv- so happy you got into the trial! I think it is great you will be followed so closely. I hope with all my heart that this is your magic treatment!
I have a chemopause question. My last period was Oct. 2010 (just before my first chemo). I have had horrible hot flashes and night sweats since Dec. 2010. A couple of weeks ago we went to Omaha for the weekend and as we were driving home it occured to me that I hadn't had a "hot on" all weekend. That same weekend I noticed the extreme dryness "down there" was gone and instead was extremely, uhm...moist. That lasted about a week and has since calmed down and the flashes are still gone. I have just felt as if I were going to start my period, but it has not come. Can anyone tell me their experience with chemopause? Should I ask to be tested to see if I am truly in menopause (I will be 47 in Oct.)? I am concerned that if my period comes back, will it significantly affect my estrogen levels. I was 3% ER+. Just wondering if an ooph or Lupron shots would be recommended to keep me in menopause. I would appreciate any advice! Thank ladies!
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Tif I had my gyno test me she told me I was in menopause, my symptoms to had passed. A WEEK later I started!!! I was scared so called her and she made me come in for testing. My Mo told me that I was probably not at my age it was unlikely. So I would just give it some more time to see what happens. Also my periods have been horrible too! Then I skipped 2 months and while on vacation it came again. Perfect timing huh?
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Ks- that's another thing I am afraid of- sporadic and heavy periods.They always show up at the worst time!! After all this cancer crap, the one thing I WAS happy about was not having a period again. I am hoping the flashes just decided to stop and it is nothing more than that. If I still don't get a period by the time I see my MO again (late Sept.), I will assume I am in permanent menopause. I will probably still ask to be tested though!
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TifJ - your story with regard to hot flashes sounds like mine. I haven't had a period since chemo (Feb. 2010). I had hot flashes after radiation but they stopped. Then I started to feel like I was going to get a period off an on and it never materialized. Months later, the hot flashes started again. I'm not 48 and think I'm in menopause but who really knows????
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Sugar- Crap!! You mean the flashes can start again? NOOOO! LOL!
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I havn't had my period yet. I finished chemo two months ago still having radition for another week. I am having lots of hot flushes . It sounds like thats pretty normal. I been feeling very stiff and I seize up a bit if I stay in position to long is that normal? Anyway can't wait for my hair to get longer its bit like watchinh paint try at the moment.
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TifJ - I haven't had any hot flashes in a month or so. I also bought a great fan at Costco that blows on me lightly in the night because for a while the air conditioning just wasn't cutting it for me and my poor family members were getting rather cold in the house.
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Gabbi- yes, that is very normal. I am almost 20 months past my last chemo and still feel about 20 years older physically! I do need to exercise more and I know that would help!
Sugar- I sleep with a small fan on me as well. Last night I woke up with a small, short flash, but I just felt a little tingle and heat- no sweating!
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Hello everyone. My name is Kim Shapiro, and I was a friend of Suze35. I have spent the past six months working on a book about her journey here on these disussion boards. As breastcancer.org owns the rights to everything Susan wrote here, it will not be going into general publication. Instead a few copies will be made and given to her family and friends. As I was reviewing the preface and afterword this morning, I realized that they are both very much about all of you and how important you were to Susan. I feel she would have wanted all of you to get a chance to read them. So please excuse me for intruding on your space here, but I thought I would post them for you all to read.
544 Days: one woman's cancer journey
Preface
We were in Florida the first time I remember Susan mentioning her “family” at breastcancer.org. It was the first weekend in November and she was still feeling pretty good. Tired, but still pretty good. We had wanted to have some time away from the kids and husbands to chat, drink some wine and visit a spiritualist camp in nearby Cassadaga, Florida.
Over dinner one night, we discussed the details of her funeral. Sad, but still many months, if not years, away. We both knew that she would not live to see her children grow up, graduate from college, and get married - but we did at least hope she would have a significant amount of time left with her children and husband, Rob.
She wanted to be cremated, she told me, and was going to have her memorial service at a funeral home in Fort Lauderdale. No religion, she laughingly insisted - after all, she was not going to be some kind of deathbed convert - but it would mean a lot to her if I would write something and speak at the service. I assured her I would as well as her other request that I be there to help Rob and her three children, Aiden, Liam and Keegan, aged 10, 7, and 4 at the time.
We were at dessert by this point, weepy, sipping our glasses of chardonnay, when she made her final request. “I need you to let my “online family” know,” she said.
Online family? I didn’t know what she was talking about.
“The other triple negative breast cancer patients on the discussion board at breastcancer.org. They have been like a family to me through all of this. I don’t want to just disappear from them. I want them to know what happened and how I felt about them so that they won’t be worrying and wondering. It’s terrible when someone on the board just vanishes ....”
I agreed, not really giving it too much thought. It was, after all, a long, long way away.
We returned from our Florida trip to a weather delayed halloween party for the kids. Everyone happy, laughing, eating chocolate and racing around our house. Susan looked pretty healthy. The holiday season was just around the corner. Life seemed good. Plans were made for ski trips that winter with the kids, and a possible snorkeling trip down to the Florida Keys in 2012.
I never got to see that Susan, the healthy looking one, with the short hair and big smile, again. Her health went rapidly downhill in November and she was rushed from experimental trial to emergency chemo treatments, all in the hope of slowing down her rapidly advancing cancer. She struggled to find the strength to make it through a family Christmas in Old Williamsburg and then it was back to the hospital in early 2012. There was no longer any control - she was at the mercy of this terrible disease and we all knew it.
One of the last times I spoke with her, she was lying in a hospital bed at home. She had a piece of paper with a bunch of screen names and passwords written out for me. Underneath them she had written in a somewhat shaky hand: “Write something beautiful for me, Kim. I know you’ll know what to say.”
So I found myself, on the morning of March 12, 2012, staring at my ipad screen, trying to find the words to tell these strangers that Susan had died. I went to the breastcancer.org site, signed in under Susan’s screen name, Suze35, and for the first time actually saw what she had been talking about. There on that screen were written the pain, fears and deepest desires that she had shared with these other women who were also struggling in their own ways to survive.
This is that story.
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Afterword
It was not until several days after Susan had died, while I was reading the many posts of sympathy and condolences on the triple negative discussion board, that I realized that they had not merely suffered one loss, but instead had lost three within that week in March.
LJ or Laurajane, as she was known in her posts, had passed away a day and a half before Susan. MBJ had passed away two days after her. As I read through Susan’s posts, I saw those two screen names pop up again and again. Who were these women, I wondered, who had struggled against the same disease and then all passed away within a few hours of each other?
I had heard Susan mention the name Laura Jane. I knew that she and Susan had met up a few times for visits in NYC. With a little digging, I discovered that she was an artist from Bloomington, Indiana, who had passed away on her 49th birthday. She had left behind three children, one grandchild and a dog named Charlie.
MBJ was more of a mystery. She turned out to be a young woman based in Louisville, Kentucky. After a 2009 diagnosis, she had believed she had beaten triple negative and had relocated to Kentucky from Los Angeles with her husband to start a new life. Five months later on the day that Susan died, her liver shut down. She died in her husband’s arms two days later.
Even now as I write this six months after Susan’s passing, the death of these three still seems to rock the woman of the triple negative discussion board. Perhaps that is at the core of what this book has been about: that in the midst of the most frightening, and sometimes final, battle of their lives, women from all over the world have found solace, laughter, information and, yes, love, through the guise of a simple internet discussion board. This community or “family” is very much self run and self regulated but still manages day after day to provide people with solace.
Yes, I did not immediately understand what Susan meant in that restaurant in Florida when she asked me to make sure her “family” knew.
Now, I do.
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Thank you all for allowing me to post this here. Susan's death was such a huge loss to me as her friend that I found working on this book project both satisfying and deeply emotional. It means a great deal to me that I was able to share some of it with all of you.
Kim
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Oh Dearest Kim,
Words escape me to express my deepest thanks for stopping in here to share this story with us. It is obvious that you loved Suze deeply. Your way of writing is beautiful and Suze would be pleased that you took the time to reach out to all of us here on the TN thread. She was such an inspiration. And her ways are still at work through you. Thank you.
Navymom
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Kim,
A simple thank you seems inadequate. Your words are beautiful and I can vision Suze smiling at your words.
Thank you.
Michelle
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Kim,
Thank you so much for sharing these passages. I was just thinking about Suze yesterday. She had a big impact on my journey throughout treatment and sent me the link to a clinical trial I eventually participated in for additional chemo. She was such an incredible person, so strong and logical in her thinking, one of the most grounded people I've known. I would love to read the entire book as she was such an inspiration to me.
The three women we lost so close together were all such talented and expressive women. I have been privileged to have known them.
Christina
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Luv - glad the stars lined up, for you to be in the trial. How wonderful that it's a pill and you won't be tethered to a bag. I hope it is an easy drug for you, so you can better enjoy your holiday.
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Christina,
Thank you so much for posting this. As I sat here with my husband reading this, he finally understood what I meant by "the sisterhood" or "my support sisters" - that this and another group I am part of IS family in a way no one without this horrid disease can understand...that every loss hurts & every victory causes the smile that he will see on my face as I look at my computer screen.
Thank you for sharing Suze's words & as we grieve the loss of yet three more sisters in recent weeks, there is comfort in knowing that not only did we get strength & support from them, but they got it from us.
Please give my condolences & wishes for bright blessings to her family.0 -
Kim - thank you for including us. I am glad you were given a peek at our little world here. Perhaps only our mates, know how much we love and support one another. It may be hard for some people to understand our bond to each other, when only few will ever " meet" in person. When there is a death, we feel it like a blow.
I am so sorry for the loss of your good friend. How lucky she was to have you.0 -
Kim... I never had the pleasure of 'meeting' Suze, but am honoured to be part of this wonderful group of ladies who Suze called 'family'. Thank you so much for sharing with us, she was lucky to have you as a friend.
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