Calling all TNs

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!

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!

Sugar- Crap!! You mean the flashes can start again? NOOOO! LOL!

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.

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 

Kim,

A simple thank you seems inadequate.  Your words are beautiful and I can vision Suze smiling at your words. 

Thank you.

 Michelle

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.

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.

Kim thank you so much for sharing even though the tears are flowing.  She was such an inspiration and missed so much!  I don't think anyone can understand the bond us TN sisters have.  They are family!

Kim, I did not know Suze, I think she passed when I first joined the board, but I was moved by all the support and love for her and all the other wonderful ladies here. Thank you so much for sharing.

Oh Kim thank  so much for posting about Suze even though my tears are flowing freely.  We all miss her so much just as you must do.  She was a wonderful,  helpful,  kind lady who only thought of others. I will treasure your words and make sure I am here always for all our friends on here as Suze was for us. Thank you.  Annie    

Kim- Thank you so much for sharing your loving thoughts of Susan with us. We miss Suze, LJ and MBJ more than we can put into words. She was blessed to have you as a friend.

that was so beautiful Kim...thank you. 

Back from a great weekend with friends in Tampa.  So fun to finally have a little weekend away.  All we did was eat..me so fat!

Looking toward my DIEP in November and getting just a little nervous.  i know it is what I want for sure.  Just may wait til Fed depending on my ridiculous insurance.

Luv...glad you got into that trial. 

Inmate...still hugging you darling.

Cocker...let us know when you hear anything about your daughter

TifJ...still waiting for my period to appear too.  Been gone since last October.  Hope it stays away but always wondering if it will.  MO is doing blood work when I go back in Oct for followup.  Hot flashes have diminished quite a bit too but still get some doozies..they are just fewer. Hate worrying about getting pregnant when not sure if it is even possible.

Mags

Kim:

I am attempting to post this through my tears.  What a beautiful post you wrote and all the love and admiration- and then, the loss, that you have felt and still feel for Suze is so evident in every word you typed.  What a very dear and precious friend you are and I know that Suze is smiling down upon you, so proud to have shared her life with you.

Suze, LJ and MBJ were so very dear to all of us - I know we all were terribly shaken by the loss of these three most beautiful young women.  We all started out just about on the same page, and to have to watch three of our most beloved sisters begin to suffer and fall to this beast of a disease is something etched upon each of our hearts forever.  These are three horrendous losses that not a one of us will forever forget - they meant that much to us.  While Suze and LJ began to fell they might be fighting against the odds, they each remained so vivacious, optimistic, and endearing, oftentimes comforting us!  None of us, not even Mary, knew just how far downhill she was going, while not even under active treatment.  She was so busy and excited about planning her new life in Kentucky.  In retrospect, I honestly believe that Mary thought all the pain she was suffering in her shoulder was from the frozen shoulder she had suffered shortly after her surgery.  Obviously, by the time she was seen, it was found to be cancer, spreading like a wild vine and then, within such a short period of time, shutting down her liver.  These were most assuredly three very tragic losses, for their families, friends and for all of us.  Each of them had so much more living and loving to do and give.  I will mourn them always.

Thank you so much for thinking of us and your above post.  May life always be gentle with you,

Linda

TifJ - I had a bit of blood myself last November.  My GP told me to let her know asap if I ever have any blood. So, when I had some traces, she sent me for a pelvic ultrasound and all was fine.  Afterwards, my medical oncologist said it was very common having trace blood. Hang in there!