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(13 replies, posted in General Discussion)

Thanks, everyone, for your kindness and support. I miss Mother each day and know that some good will come of her ICC and death....My brother is donating a portion of his clothing sales to The Michael J Fox Foundation in honor of my Dad....and will donate a portion to this foundation in honor of my Mom....(in honor - not memory! )

I would also like to honor her by helping in some small way with the work of the foundation....ideas welcomed!

Thanks, again.....for your love and for being here.

Deane

SO excited for you all !!!!

Deane

Dear Patti....

What an honor it has been for me to read about your incredible brother! Your love for him is a testament to his bravery and I am sure that same love helped him to maintain joy in his struggle.

Bless you for sharing his life with us here....Prayers for you and all his family as you grieve.

Deane

Dear Beverly,

My sincere condolences for you as you grieve for your Dad. You will be in my prayers.

Deane

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(61 replies, posted in Introductions!)

Dear Sandy....

CONGRATULATIONS....Thanks for starting my day with a huge smile smile

Deane

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(4 replies, posted in Introductions!)

Hi , Laura....greetings from Virginia!

So glad that you found this site...It has been an invaluable source of research and support for me. 

Best of luck as your tumors shrink...very happy that the chemo is working for you!

Deane

7

(13 replies, posted in General Discussion)

My sweet Mother passed away today at 5:00 pm. She died as she had lived...with a quiet and fierce determination....with  grace and dignity....with a wit that was uncompromised by pain and suffering....and wth the utter respect of those who were blessed to be included in her passing.

  Her intrahepatic cc was found on Dec 12th.....just a few days more than a month ago.....it is a shame that she did not have the opportunity to fight it further(as she surely would have) and a grace that she did not have to suffer more (as she may have)....a part of her legacy may be in the dedication that we will now have to share with others about this disease.

She was one of my greatest joys in this life...and I am joyous for her safe passage into heaven, knowing that she isi surrounded by the love of her parents and brother....and is having the 'best ever' time with Daddy.

Thank you, Mom, for it all...Rest well.

Mama is not well.

Thanks, Deane

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(15 replies, posted in Introductions!)

Dear Jen....

I am so sorry to hear the news abvout your dad....shock, confusion....I get all of that...My dad died from a different cancer 6 weeks after diagnosis and I felt much the same way.  Time has a way of healing the disbelief and softenig the shock.

My Mom was diagnosed with intrahepatic about the same time as your dad....and I , too, have been asking myself many of the same questions....what did I miss? Should I have seen something?  The more I research and read on this wonderful board has helped dispell many of my 'woulda, shoulda. coulda's"....This cancer is a creeper.

What it HAS done, for me, is increased my awareness....and made me inteested in increasing awareness...

Hope that you will find some peace and solace in your grief about a good man taken too soon.

Love and prayers.

Deane

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(33 replies, posted in Introductions!)

Dear Suz....what great news about your sister's CT!  The roller coaster is just that, tho it sounds like she is in the lead car!

What a wonderful bllessing you both have to be able to be together right now-prayers for you both as she approache her Feb scan.

Deane

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(33 replies, posted in Introductions!)

Dear Suz....what great news about your sister's CT!  The roller coaster is just that, tho it sounds like she is in the lead car!

What a wonderful bllessing you both have to be able to be together right now-prayers for you both as she approache her Feb scan.

Deane

Hi Ilias...

so sorry to hear about your Mom...mine is in hospital with an infection right now, too...one day at a time...:)

Prayers to you,

Deane

13

(18 replies, posted in General Discussion)

Lainey....she is also vain....and that is OK by me, if it helps!

Found out yesterday that she has a difficult strain of C diff, brought on by antibiotics and excacerbated by the chemo.....two new meds....she is wped out, but managed to sit  in a chair for 30 mins today....

I have left to get my youngest daughter back to school and a ever grateful that my brother from Atlanta is able to be with her....

He told her he would wheel her down the hall to see the sunlight.....she insisted that he buy her a new robe first!

smile

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(18 replies, posted in General Discussion)

And Lainey......she 'heard' him today when he talked about being 'disconcerted' about the tumore growth.....she said....well, I'm just a big old sack of protoplasm...let's just get through this hump and see what we can do!

She will surprise me...no matter WHAT!

Thanks for you encoragement smile

15

(18 replies, posted in General Discussion)

Mother still in CCU step down and feeling stronger today....2 blood transfusions helped her 'pink up' a little...and a good hairbrush,  nice lotion and some red lipstick helped even more....nothing like looking better to make you feel better:)

Her oncologist came by....he is a lovely man....she adores him...he saw her through stage 4 lung cancer 7 yrs ago and my grandmother with leukemia and started my Dad on his journey with anaplastic thyroid cancer....thye are old buddies and he pulled up a chair and talked politics and joked for a long while this afternoon....she had fun!

Have been looking at diagnosis stats...we ARE a rare bunch, aren't we? I am ready to get on board with increaing awareness!

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(18 replies, posted in General Discussion)

Excuse all the typos.....my keys need a good cleaning!

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(18 replies, posted in General Discussion)

Excuse all the typos.....my keys need a good cleaning!

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(18 replies, posted in General Discussion)

Update on Mom.....

More hydrated and feeling SO much better today! Giver her a transfusion....more plasma expander and an antibiotic for the sepsis....heart rate is still high....and the the thorasic surgeon came by to discuss the reason for the unequal BP.....blocked artey going to her left shoulder...."incidental " find...he will do one more study, but because she is asyptomatic, will probably follow her unless efinds something else......

The CT also showed that her mas which was 8.5 on Dec 12 is now 11.2 cm and the nodule in her right lung is also growing.....no chemo for now since she is so weak....Onc said today that, unless she improves dramatically, chemo will not be an option....

So....For today....she s resting well....and peaceul....and thats a blessing and bonus after yesterday!

Thanks for all of your kindness and encouragement....I feel lucky to have found you.

Deane

19

(18 replies, posted in General Discussion)

Thanks, Gavin! Just told her that you are all right behind her on the computer screen - she grinned smile

They are saying that the extreme diarrhea was a nasty side effect of the Xeloda.....who one earth knows about the weird BP....we shall see!

I wish you could all know her....she is such a dear.....smart and witty....and beautiful smile

20

(18 replies, posted in General Discussion)

Thanks,Lainey! Will update as I know more....and yes....she is a real trooper! A Southern Steel Magnolia!

My mother finished her two week 'on' schedule with Xeloda on Wednesday night....had labs drawn yesterday and was very, very weak and tired.  Started having uncontrollable diarrhea last night....it resolved at about midnight with the help of 4 doses of Immodium, but started again this morning at about 4:30.  Called 911 - when she was admitted to ER, her heart rate was 140 and BP was about 70/40......hydration and plasma has helped....but now she has a 20 point difference in her left and right arm BP's....just did a CT to see if her tumor has grown enough to be pressing on her aortic valve....Has anyone else had this???

Thanks,

Deane

What great pictures - thank you!

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(11 replies, posted in General Discussion)

Hi Annie!

Good luck to your brother this morning!

My Mom also has intrahepatic and couldn't receive her IV chemo last week due to low platelet counts....we made a choice/decision to count it as blessing so that her counts would improve and she could feel stronger for the next go-round!  That one small choice made a great improvement in her outlook this last week smile

We keep saying to each other..."it's all about perspective!"

From a 'newcomer" to you, "oldtimer"...YAY!

You GO, girl smile

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(7 replies, posted in Introductions!)

And....Pam...I love my Mother with my whole heart....and cant imagine what it would feel like to have my daughter battling this....special prayers for you...

GAVIN! Dundee , huh? My family is originally from Collieston in Aberdeenshire...Hi, Scottish cousin! (well, kinda)...

And to my neighbor in Roanoke smile Thanks for the tip about Duke  - will let you know!

Love and prayers to you all....and many thanks.

Deane