Calling all TNs
Comments
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Suze- you said what I didn't feel I could. I am a firm believer in quality vs. quantity, but since it is not me facing the unknown I thought my words would sound too hollow. May both you and LJ continue to find the strength and courage to face an uncertain future. Carpe Diem0
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Hi Girls! I am happy to see some familiar avatars on here, as well as some new ones.
I don't get on to post as much as I'd like, but I'm still here. A year ago today I was going through my first chemo. It really is amazing the difference a year can make.
I am eternally grateful to all of you ladies and this board for the info, support and love that exists here.Huge hugs to all our TNs currently in the midst of tx.
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Sorry-- I didnt' mean I was "happy" to see new avatars... Gosh, that came out wrong.
I just meant I'm happy that people are taking such support from this board.Sorry if that totally came out wrong...
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CLEAN PET SCAN!!! Going out to celebrate with my family tonight. Ca 27-29 slightly elevated but doc says prob from chemo. WOOT WOOT
LJ and Suze --you are both amazing. Your courage and strength are a shining example of how we all should be. I have followed you both since joining in August. May you feel the love of the entire TN family right now.
Maggie
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Great News Mags!! Yes, go out and celebrate!!
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Mags20487 -yeah!!! Celebrate!!! Such fantastic news!!!0
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Mags - Wow, what a feeling it must be to have such a heavy load off your shoulders!!! Congrats!!! Rejoice! Yes chemo does elevate the tumor markers somewhat.
slcst12 - We knew what you meant. Don't apologize. We would never think for a minute that you would think otherwise, as there is no one in this world who likes to see BC anywhere on this planet. We all can't stand to hear of one single new case.
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Mags - what great news! Congrats!
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Mags- Very happy for you! Have a good time tonight.0
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LJ and Suze:
My heart aches, truly aches, for being so powerless in being able to help either of you to attain what you, and what each of us profoundly wants, and that is health that will bolster decades and decades of more living and loving and sharing. All I can do is to let you both know that I think of you daily, I pray for many, many more years for each of you, and I pray that the promise of hope sustains each of you. While I well know that not one of us on the face of this earth is ever guaranteed of "tomorrow," and that my time will come as well when I will be faced with the very same issues you both have been forced to face, I only pray to God that I have the strength, the dignity, the beauty and the grace that each of you have been so imbued with. I will never stop hoping and praying for you.
With love,
Linda
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Suze and LJ - I admire you both so much, and I feel for you with all of my heart.0
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I am new to this, and although it was orig posted in May 2010, found very helpful. Dx 8/10/11 at age 46, Stage IIA, invasive, no node involivement, L mastectomy, no rads, DD ACx4, Taxol x3 as a blood clot was found in right atrium of heart and required open heart surgery, Still new to all of this.
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Wow..Lynn..you have been through it..open heart surgery?? Was it because of the Adrimycin? oops..sorry for all the ???? b-4 we said hey....
just kinda nosy here.Suze and LJ..ditto what Linda posted... I wish I could express myself more but I just get so pissed off I just can't think or talk...and that doesn't help anyone at all..
And that is what stinks..ok..we all have BC..some of us will go on and be fine..some of us will have to go through more treatments and make decisions that we never ever thought we would have to make at this point in our lifetime.
My question is..how do we continue? I used to be this always happy person..now I stop myself from being truly happy because I never know when the "other shoe will drop"...it's so hard to mentally "move on"...
ok..time to quit whining....
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LJ, I hope you were able to get some relief for the pain today.
Susan, I am thinking of you daily. Linda so eloquently stated what I feel, too - powerless and sad. I admire you and LJ very much. You are both very bright, strong women.
Love,
Christina
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Laurajane and Susan - I don't know what to say except you are both in my thoughts and prayers and I've been thinking about you a lot of the past few days. (((((hugs)))))))
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Susan and Laura I hope and pray that you both have many, many more years ahead of you. I admire both of you lovely woman! You inspire me to stay strong and positive. Praying that you find more strenght, peace and comfort with your decisions. I hope and pray if the day comes that I am faced with the same thing you both are going through that I can be half the inspiration to someone that you both have been to me!
God Bless!!!
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Lori48 - I'm having more blood test, a CBC and metabolic panel. My symptoms were fatigue and shortness of breath - I thought it would be low. I'll keep you posted on what I learn.
Susan - I hope you and the family are enjoying the anticipation of the trip. Do you ever take Ritilan? I had my onco write me a script for days when I had to do something and had zero energy.
Mags - great news.
Hugs everyone!0 -
Laura Jane, darling person, I'm sending you love. I'm so sorry to hear this news. Love and blessings to you and enjoy the root beer floats.
Susan0 -
Laura Jane, darling person, I'm sending you love. I'm so sorry to hear this news. Love and blessings to you and enjoy the root beer floats.
Susan0 -
Thank you all for your love and support.
Suze- I thought and go back and forth on those same thoughts. But then I get this serge of hope that something might work.
I saw my onc on Tuesday and she was shocked at how much my FC had progressed in one week. My Tumor markers went from H382 the day I started the Cisplatin and Cetuximab to H1100 after two treatments. I asked if I could try the Halavan and even though it seemed like my skin mets were starting to come back on it it sure worked miracles for the first 5 weeks. I just want to slow this down. The edema in my belly makes me look like I've gained about 20 lbs, funny it's only on my left side. The edema in my arm which is so painful is blown up like 4 times the size all the way from my
shoulder to my fingers. I have no use I can't even lift it. It's such a strange painful feeling. The
tumors and skin mets look like some one has thrown acid on me and this alien creature is trying to
crawl out of my body from my neck down to my lower ribs wound under my arm pit on around to my back. My pain meds have been increased to 30mg time release every 8 hours and 30mg short acting every 4 hrs. This has really helped. I'm sharing this with you all to try and give you a picture of what I am going through so that I can share something wonderful that has happened to me.
Throughout all of this FC I have been in an on again off again relationship with the most selfish,insensitive, cheating, lying mentally abusive boyfriend. Full of false promises, wealthy someone who spent $250,000 renovating his condo yet doesn't even have the desire to replace my broken fridge, called me ugly since I had cancer which is why he has no sexual desire for me, he constantly talks about other womans beautiful breasts, offered to pay the $24,000 for my Cetuximab when I had broken up with him again for the thousanth time, so I let him come here for Christmas and it was just another lie. You get the picture I've tolerated this abuse because I didn't think anyone else would ever want me because of my FC.
Well a couple of months ago I met this really nice man that a friend introduced me to. I was feeling good then, the Halavan was working and we went out to dinner a couple of times. I didnt tell him about my cancer because I really thought I was beating it. He's very handsome, extremely wealthy, and most important so sincerely nice. He lives in DC. But has one of his businesses here. We have so much in common it truly seemed like a set up. It just felt so wonderful spending time with him and to feel attractive to someone so. He kissed me passionately after each dinner and it felt wonderful. I wasn't sure I'd ever hear from him again but I cherished that feeling of being desired. Well, lo and behold I got an email from him and he said he would be back in town on the 17th and I didn't no
what to do. I decided to be honest with him and tell him about my FC. He told me he felt like someone had kicked him in the gut because he thought I was the woman of his dreams. He is saddened by my cancer but hopes I can beat it. We've gone out every night and had wonderful dinners and superfine wine while he's been here and he has told me how much he wants to make love to me. ( this is with my Cetuximab pimple like rash all over my face. He says he doesn't even see it because my beauty as a person shines through. My mastectomy doesn't matter to him. When i showed him my edema he said it just looks a little swollen. We talk for hours and seem to close each resturant we go to and it is wonderful. He wants to fly me to DC and other places when I am feeling up to it. He makes me feel like I am the most beautiful person in the world. My kids really like him. I feel so happy in my heart to have experienced this kind of feeling before I am gone. I look forward to feeling better and not quite as self conscience to take him up on his offer to make love.
For now it is so exciting to make out like teenagers. My exboyfriend was like a cancer I'm saddened that I've tolerated his mental abuse for the last 5 1/2 years. I truly think there is a correlation between him and my FC. I am going to beat this FC. Love is so healing. Thanks for letting me write this book and sharing.0 -
Laurajane that is absolutely the most wonderful story I've heard in a long time. You truly deserve to have a man love you for you and not what you look like. I am so happy for you and perhaps this is your miracle! Enjoy every moment with him and I hope your onc gets you going on something to relieve your swelling and pain.
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LauraJane, you are such a beautifull person inside and out, I'm so happy you have met someone who treats you as you deserve to be treated. I agree with Tifj, I believe this is your miracle! Enjoy every moment with him.
When will your onc be starting you on Havalen again?
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LauraJane - I have goosebumps and tears of joy after reading your last post! I too believe that this is your miracle . . . with love anything is possible. To finally be treated as you should have been all along, is sooooo awesome. I can't stop smiling now! And I'm praying that the Havalen will begin to slow the train down. I know I don't post much, but I follow everyone's ups and downs regularly. You're always on my mind. Keep on making out like a teenager!
Kathy
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Maybe Laurajane's new man can talk to my husband- I'd like to "make out like a teenager" again!!
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I'm with you Tifj, I can't remember the last time my hubby and I made out! LOL
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Laurajane, I am so happy that you have found someone who recognizes your beautiful spirit! I hope you will find some relief with the Halaven. I am still on it and I think it is easy to tolerate. Did they ever rebiopsy just in case your cancer mutated to HER2? I don't even know if that is a possibility or an option or not but you could ask your MO about it and whether it would be worthwhile to try.
sending you lots of love and support,
Christina
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I am so happy for you Lj! You deserve happiness!
Weather is crazy here.a A tree side swiped our house. Just messed up the gutter thank goodness. Branches every where. Gonna a be alot of cleanup.0 -
Thanks all of you it's so nice to be able to share a bit of happy news. I started back on Halavan yesterday. I will know by next Tuesday if it's helping. Yes I was tested let July to see if my FC had mutated and it had not. My onc said she has never seen a disease like mine where the FC rejects the chemos right away. It is indeed a train. I too hope for miracles for all of us. Wishing all of you great making out sessions too. But I think it's hard to beat a gentle hug from the person that you know loves you and has been there for those of you that have someone like that through the long tough battle you all are facing.
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LJ - Your story brought tears to my eyes, I'm thrilled you are feeling love and happiness during all of this - you deserve it! You're in my thoughts every day and I pray a miracle will come your way.
Stay strong and enjoy the good things!......and the root beer floats LOL
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No, LJ, you have that wrong - we thank YOU for sharing with US that so very private and special part of your life. I am delighted to hear that this man has entered your life and brought happiness and meaning to it. Who says there aren't angels here on earth???????
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