Do the Kindreds have any idea AT ALL as to how much I love you?????
I have had a bit of not so good news lately, but I will try and be brief with the recap! Many of you know that I have been part of a UCLA clinical trial since October~ and that the chemo has been doing a number on my poor body! It also has been keeping the beast at bay~ always a good thing! Well, until now, that is! I had excrutiating abdominal pains and cutting right to the chase, a PET scan showed mets to my abdominal lymphnodes~ and every nerve ending was yelling at me! I know I have always been pretty good to my body...why my belly decided to yell at me with such ugly words is beyond me! Downright rude! :-)
So, I could only stay on the study as long as the drgs worked! (really??) Oh well...I am now going to start a different chemo on Tuesday AM~ Abraxane to be precise. I LOVE my oncologist and the entire staff at the cancer/chemo center, and I feel confidant and strong. As we know, I also want to "Be Stronger Than, Not Angry At". Which isn't to say I wasn't scared, I absolutely was. I also know that "We do what we have to do, so we can do what we want to do", right?
I had a port put in yesterday~ my brave one and only usable vein has been so faithful in taking the chemo and giving blood for labs and scans since October, believe you me. But it is time for a rest.
Today I came home from the oncologist and found...the MOST BEAUTIFUL bouquet of delicious red roses and a card from The Kindreds. I wish the words Thank You were not so overused...I wish new words could be invented to convey how my heart was touched and how my battered spirit soared while tears rolled down my face. You are the absolute epitome of grace, compassion, and true fellow-feeling. It is a honor to be connected to you with heartstrings.
I love you all...and send hope, courage and blessings to the new ones I have not met~ and special cyber-hugs and love to those long-time friends who I have met in a place we wish we had never heard of. You make the journey so much easier...
Hugs,
Chen♥
Comments
-
Bear Hugs to You.
We love you tons, Chenheart, and are happy to hear the red roses arrived to brighten your day! You, your Reggie, and your loved ones are in my prayers. You have given so much of yourself to others in the form of support, education, and inspiration. Countless of Survivors and Caregivers here on CSN have been uplifted by your cyber presence and sage advice. Please know you are very dear to us.
Keep that Fighting Spirit inside of you Strong.
Hugs,
Ines0 -
Flowerssbmly53 said:Right back atcha!
It is an honor to be connected to YOU by heartstrings. I cannot begin to tell you how much you are in my thoughts and prayers and well wishes.
Sue
are a small way to give back the tons and tons you have given to us.
So glad they made you smile! Wish we could send a miracle along with the bouquet:).
xo
Victoria0 -
I think that many of us haveaisling8 said:Flowers
are a small way to give back the tons and tons you have given to us.
So glad they made you smile! Wish we could send a miracle along with the bouquet:).
xo
Victoria
I think that many of us have been having difficulty getting on here and posting. I hope this post. My heart and prayers are with you as you go into this next treatment.
We know that you have had computer problems and also many issues to deal with fighting the beast. Know while we all miss you wise advice and your presence here that we do understand. You were one of my very first friends here and you have always acted with grace, kindness and humor. You are so often the voice of reason when discussions go astray and I, for one, think that you are one incredibly wonderful woman.
I often light a candle for my friends here and right now it is lite for you.
Stef0 -
THANK YOU....fauxma said:I think that many of us have
I think that many of us have been having difficulty getting on here and posting. I hope this post. My heart and prayers are with you as you go into this next treatment.
We know that you have had computer problems and also many issues to deal with fighting the beast. Know while we all miss you wise advice and your presence here that we do understand. You were one of my very first friends here and you have always acted with grace, kindness and humor. You are so often the voice of reason when discussions go astray and I, for one, think that you are one incredibly wonderful woman.
I often light a candle for my friends here and right now it is lite for you.
Stef
thank you Claudia, for being YOU! I hate that the beast has reared it's ugly head, again....I had a port implanted 7 weeks ago...it freaked me out at first but is a blessing now...just put your numbing cream on, and really glop it on, about 1-2 hours prior to chemo and cover it with " press and seal"....it really numbs it so the poke is painless....
Is there any way your oncologist could get you on Avastin? The FDA pulled it in Jan. For stage IV bc....my oncologist went straight to the manufacturer and they agreed to replace, to my cancer center, what the use for me at no cost to us...our insurance company denied it, which we knew it would...For my first two infusions I had Avastin, Zemcar and Carboplatin....I had a horrible reaction...half way home I literally was gasping for breath! This last infusion they omitted the Zemcar and no problem....I'm sick of the no taste buds...and I have lost a lot of weight and I was pretty thin to begin with....I have to make myself eat....
Anyway, I am wishing you sunshine on these dark days...post when you can...we care deeply
Hugs, Nancy0 -
Claudia I am glad to hearMAJW said:THANK YOU....
thank you Claudia, for being YOU! I hate that the beast has reared it's ugly head, again....I had a port implanted 7 weeks ago...it freaked me out at first but is a blessing now...just put your numbing cream on, and really glop it on, about 1-2 hours prior to chemo and cover it with " press and seal"....it really numbs it so the poke is painless....
Is there any way your oncologist could get you on Avastin? The FDA pulled it in Jan. For stage IV bc....my oncologist went straight to the manufacturer and they agreed to replace, to my cancer center, what the use for me at no cost to us...our insurance company denied it, which we knew it would...For my first two infusions I had Avastin, Zemcar and Carboplatin....I had a horrible reaction...half way home I literally was gasping for breath! This last infusion they omitted the Zemcar and no problem....I'm sick of the no taste buds...and I have lost a lot of weight and I was pretty thin to begin with....I have to make myself eat....
Anyway, I am wishing you sunshine on these dark days...post when you can...we care deeply
Hugs, Nancy
that the flowers have brighten your day. Thank you for posting and making me smile.
Nancy,
Good job with your doctors good to know that last infusion undergone without breathing problems.
Hugs0 -
Nancy,MAJW said:THANK YOU....
thank you Claudia, for being YOU! I hate that the beast has reared it's ugly head, again....I had a port implanted 7 weeks ago...it freaked me out at first but is a blessing now...just put your numbing cream on, and really glop it on, about 1-2 hours prior to chemo and cover it with " press and seal"....it really numbs it so the poke is painless....
Is there any way your oncologist could get you on Avastin? The FDA pulled it in Jan. For stage IV bc....my oncologist went straight to the manufacturer and they agreed to replace, to my cancer center, what the use for me at no cost to us...our insurance company denied it, which we knew it would...For my first two infusions I had Avastin, Zemcar and Carboplatin....I had a horrible reaction...half way home I literally was gasping for breath! This last infusion they omitted the Zemcar and no problem....I'm sick of the no taste buds...and I have lost a lot of weight and I was pretty thin to begin with....I have to make myself eat....
Anyway, I am wishing you sunshine on these dark days...post when you can...we care deeply
Hugs, Nancy
Thank you for the
Nancy,
Thank you for the well wishes...my
is with you as you do battle as well. The clinical trial I was on the drug was a "1st cousin to Avastin", and being as it stopped working for me, Abraxane it is! My insurance wants to deny coverage as well...it isn't as if we haven't paid a fortune over the years to even have insurance. It really sticks in my craw, so I can't dwell on it!!!
We will keep fighting !!!
Hugs,
Chen♥0 -
How wonderful
to wrap yourself around such love! Good to see your post Chen...we missed you and I miss your writing! I'm so sorry that you were experiencing such pain
As always, keeping you and the sisters in prayer. How is the family? The grandbaby?
Sending my prayers, hopes and hugs,
Sylvia0 -
Sister
Here is to your new chemo destroying that ugly beast...cheers. Hope it works for you! I sometimes feel like if I didn't have these boards I wouldn't have a place to "feel" what I am feeling. It's so refreshing to talk to people who understand. I get the kindred spirit thing. I'm happy the flowers make you feel better. Bless You.
Terry0 -
Our dearest Chenheart, 50-ft. Woman...
I'm not quite sure you realize how very much YOU are cherished & dearly loved by so many of us here. Beyond this Board and breast cancer, and into the chat room including survivors of all types. Over 5,000 posts since 2003... You've freely given of your own uber generous heart & soul, with precious time & effort. You are AMAZING.
The evil Beast be damned!!! OUT WITH IT!!! My battle cry for you, which will be shouted on Tuesday. Knowing lotsa Kindreds will join in... And, of course, you know I'll be maniacally waving my magic wand - pointing westward in your direction.
TPIAP
Love, 12/25 xo0 -
Claudia:
So glad the flowers arrived and did their job....giving you a bit of beauty for your day. You are the epitome of a very special kindred spirit and loved in bunches by ALL!
I hope the Abraxane is kind to you. I was on it from August 2011 until April 2012. The side effects were very tolerable for me and I'm hoping for you, as well.
Good luck sweet sister as you continue to kick the a$$ of the beast. Special (((hugs))) and love sent to you!
Debbie0 -
Kindreds Love Chen
Dear Chen, I was very pleased to see you posting again,too. I'm so sorry that I did not get around to friending you,or many others,sience I joined in 2008. Sometimes, men take awhile to open up to others and that was me.
I was sorry to read that your trial drug stoped working for you and you are now back on this new drug,Abraxane. My prayers and positive thoughts are with you through your fight with this "beast". I also loved and missed your posts and your stright forward way of talking about solutions to problems on this board over the last couple of months. It's just so silly that your body would be so rude to you at this time, after all you have done for it over all these years! What was it thinking? BAD ABDOMINAL LYMPHNODES !!! LOL
I,too, misted up when I read about your Flowers. It is so great to have such wonderful friends on this board!
Prayers and (((HUGS))) sent your way, Robert0 -
you are loved
by most (all?) on this board. Any post you make is eagerly read. Please keep in touch and if the computer is giving you fits: call, write, whatever works and any of us would be happy to convey your words.
((Hugs)) and energy sent to you.
Maureen0 -
Dear Chenheart ~ you are aEveningStar2 said:you are loved
by most (all?) on this board. Any post you make is eagerly read. Please keep in touch and if the computer is giving you fits: call, write, whatever works and any of us would be happy to convey your words.
((Hugs)) and energy sent to you.
Maureen
Dear Chenheart ~ you are a legacy on this board and in the hearts of so many others. There will never, ever be another who could fill your shoes. So keep them shuffling sweetie and the punches coming. Love you girl and don't you ever forget it. ♥
Lorrie0 -
Oh, THERE you are!butterflylvr said:Dear Chenheart ~ you are a
Dear Chenheart ~ you are a legacy on this board and in the hearts of so many others. There will never, ever be another who could fill your shoes. So keep them shuffling sweetie and the punches coming. Love you girl and don't you ever forget it. ♥
Lorrie
Dearest Chenheart-
I'm so sorry to hear of your latest developments. I know you're in good hands both medically and personally. Please check in again and enjoy your roses.
Hugs,
Suzanne0 -
Sorry to hear
about the trial drug not working. However, good to know they have a battle plan for you with the Abraxane. Glad you have that one faithful vein. Will keep you in my prayers.0 -
Abdominal Lymph Nodes
Dear Chen,
In 2008 when my cancer returned, the scan showed Celiac Nodes involvement. I did not even no where celiac nodes were. They are near the stomach area more than likely close to where yours are too. My first treatment eradicated them as they were never mentioned again. I hope Abraxane knock yours out dead too.
My own experiment in rebooting Femara failed miserably. My oncologist wanted me on chemotherapy but, I begged for one more try with Faslodex which is now 500 mg (I took it when it was 250 mg). My oncologist doesn't believe it will work. I scan in a few months. I know how devastating it is to read a ct scan that shows much progression. Mine are in the lungs, lining and ribs. The concern are the lungs and which has so many lymph nodes and tumors involvement. Hormonal therapies have kept me here for 17 years, so I have a hard time to part with them. I know that chemo is next... and I will do what I need to do...
I wish you well with the next step. If you don't dance with NED again, the STABLE BOY is one hell of a dancer to have in your arms. I hope to meet up with him again too.
Best wishes,
Doris0 -
Doris! I must say, it isSIROD said:Abdominal Lymph Nodes
Dear Chen,
In 2008 when my cancer returned, the scan showed Celiac Nodes involvement. I did not even no where celiac nodes were. They are near the stomach area more than likely close to where yours are too. My first treatment eradicated them as they were never mentioned again. I hope Abraxane knock yours out dead too.
My own experiment in rebooting Femara failed miserably. My oncologist wanted me on chemotherapy but, I begged for one more try with Faslodex which is now 500 mg (I took it when it was 250 mg). My oncologist doesn't believe it will work. I scan in a few months. I know how devastating it is to read a ct scan that shows much progression. Mine are in the lungs, lining and ribs. The concern are the lungs and which has so many lymph nodes and tumors involvement. Hormonal therapies have kept me here for 17 years, so I have a hard time to part with them. I know that chemo is next... and I will do what I need to do...
I wish you well with the next step. If you don't dance with NED again, the STABLE BOY is one hell of a dancer to have in your arms. I hope to meet up with him again too.
Best wishes,
Doris
Doris! I must say, it is good to laugh in the midst of all of this! I have the best mental picture of a stable boy dancing the night away...perhaps not quite as smooth on his feet as NED, but making sure I don't lose my footing as I am actually wearing high heels for a change! Thank you for introducing him to me!
I do love ALL of the Kindreds here on the boards~ the English language seems so inadequate sometimes! Where are those new words to express how I feel???? I hope the boards are kind and allow me access more often than they have been! I miss communicating with you!
Hugs,
Claudia0
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