1

(5 replies, posted in Good News / What's Working)

Hi Lisa,

I still read some of the posts and saw your name.  I'm so happy for your good news!  I saw you mentioned Scott Hamilton.  You really were my mom's soul sister- she loved him smile

Best wishes & Happy Holidays,
Kelly (Mary's daughter)

2

(28 replies, posted in Introductions!)

Thank you all so much.  It's been a difficult few days but I'm fortunate to have my husband and family.  My uncle and I keep talking about how selfish it is to want her here with us when she was in so much pain.  I feel a sense of peace knowing she never has to experience any pain or trauma from procedures/surgeries again.  She was braver than anyone should ever have to be.
The service was beautiful and reflective of my mom's spirit and personality- to live every day to its fullest, love freely and be a kind & compassionate person.

Kelly

3

(28 replies, posted in Introductions!)

Thank you all for your kind words of love and support.  My mom passed about 9am this morning.  She seemed peaceful and didn't seem to be in pain.  Her memorial service will be this Wednesday.  Please continue to keep us all in your thoughts & prayers.

Kelly (Mary's daughter)

4

(28 replies, posted in Introductions!)

Hello everyone,

I'm Mary's daughter, Kelly.  I wasn't sure where to post this so I hope starting a new topic will help everyone see my post.
My mom started home hospice this week.  Yesterday, she significantly declined, and hospice had me call my family.  Hospice does not believe she'll make it for more than a week.  My mom is fairly non-responsive but she seems comfortable and not in pain.  My husband and I are surrounded by our family and friends.
My mom spoke so highly of all of you.  I'm sure I'll miss some people, but I know my mom has spoke of her, "soul sister," Lisa Craine.  She has also mentioned Kris, Betsy, Lainey & Gavin.  You've all given her hope and strength to continue on her journey.  It means more than you'll ever know.
I wanted to keep you updated on what's going on and will try to check back here later today.

With love & peace,
Kelly Walsh

5

(39 replies, posted in General Discussion)

Thanks for your words of encouragement Percy.  They mean a lot to me.  I hope we both can enter the "promised land" soon and get at least a bit of a break from this disease.

Mary

6

(39 replies, posted in General Discussion)

Hi Percy,

I, too, can only echo what the others say here.  You are so special to this board and you go above and beyond to help us understand so much.  If I were to name all you do for us, it would fill MANY posts. 

Now is your time to rest and hopefully you will get your motivation back.  Five years is a long time to go through this horrible disease.  I have been three years and it is wearing in me.

Please stay strong for yourself and know that we all love and care for you.

Peace, Love and Many Hugs to you,
Mary

Nancy,

I wish you the best on this journey!!!

Take care of yourself too.

Peace, Love & Hugs,
Mary

8

(30 replies, posted in General Discussion)

You both crack me up!!!   And that's what I need - lots of laughter.  Humor is the best medicine!!! 

Lainy - I wish you could come here too.  It would be great to meet you in person!!!

Love to both of you.  Hoping to talk to you Saturday Kris.

Peace, love & Hugs,
Mary

9

(30 replies, posted in General Discussion)

Lainy,

You always bring a smile to my face. 

10

(30 replies, posted in General Discussion)

Hi Kris,

I tried to call you the other day but you weren't there and I wasn't able to leave a message.  I still do want to talk to you and would love, love, love to see you in person - it's been too long!!!

I'm hoping to not have to be in the hospital again for a long time! 

11

(30 replies, posted in General Discussion)

Thanks Darla and Karen.

Karen, I don't know if you remember but we met at the first luncheon that Kris organized.  It was a pleasure meeting you and your sincere, sweet spirit shone through then and in your post today.  I believe you're way down south jersey and not close to me at all.  I would love to see you but wouldn't want you to make such a trip.  Please continue to keep me in your prayers and hold me in your warm thoughts.

Love,
Mary

12

(13 replies, posted in General Discussion)

Thanks for the update Willow.  I will certainly keep Lisa in my prayers.

Love, Peace & Hugs to all,
Mary

13

(39 replies, posted in General Discussion)

Hi Percy,

I'm sorry you are having such a difficult time.  I hope you can hang in and find some more strength to go on.  I feel I'm in the same position as you at this moment and not sure where to turn.  It seems to be one thing after another and I am feeling so discouraged and want to give up.  I feel I am losing my quality of life and that is scary.

Prayers to you.

Love, Peace & Hugs,
Mary

14

(30 replies, posted in General Discussion)

Thanks Marion.  I know you feel my pain and I thank you for that.  I do intend to have a honest discussion with my oncologist and see where that leads me.

Please keep me in your warm thoughts and prayers.

Love, Peace & Hugs,
Mary

15

(30 replies, posted in General Discussion)

Thanks Marion and Kris,

Well, I was back in the hospital again.  This time with thrush.  It was miserable.  I don't know how much longer I can tolerate the Irinotecan.  I'm thinking of asking the doctor if therein another chemo I can switch to.  Do you think that is a wise decision?  I want to fight this but I'm just so tired of all the setbacks.

Peace & Hugs,
Mary

16

(30 replies, posted in General Discussion)

Marion, thanks for the warm wishes.  I was starting to feel down with all these setbacks but once again you all have encouraged me to push on.  Although I don't really know anyone personally, I do feel like you are all my extended family and I can lean on you when needed.

Willow, thanks for letting me know about your sister.  I was starting to think no one else had been on irinotecan and it's good to heR your sister is and tolerating it well.  I got reduced dose yesterday so maybe I won't be so bad wit the side effects.

Once again, I can't thank you all enough for kind, caring ways and words.

Peace & Love,
Mary

17

(30 replies, posted in General Discussion)

Hi Everyone,

Thanks for all the advice.  I do take steroids as a pre-med to my treatment and then for two days after my treatment.  The dose for the irinotecan had to be lower because of my liver blood work.  Although the number are coming down nicely they're not .  Emend is also part of my pre-med to treatment.

I'll see how it goes since I had chemo yesterday.  I feel good and was able to get out of bed this monirng. 

Love & Peace to All,
Mary

18

(30 replies, posted in General Discussion)

Hi Everyone,

Thanks for your advice and warm thoughts.  I'm feeling better today.  The doctor gave me a different anti-nausea med and it seems to be helping me.  One day at a time right?   

This is such a terrible disease and can just make you so weak.  It's hard to push on.  I pray for everyone every morning and evening in my prayers.  And of course our caregivers who give up so much to be there for us.  I don't know what I would do without my daughter and son-in-law.  My daughter has given up her job to be with me all the time so my son-in-law has become responsible for supporting them completely.  It's not easy but they never complain.  God Bless them!

Please continue to keep me in your prayers and pray that I can get stronger and fight this horror of a disease. 

I would love to hear from others who are on gemcitabine and irinotecan and what their experiences are with these two drugs.  It seems irinotecan has kicked my butt!!!

Please - all your advice is very much appreciated and needed!

Peace,
Mary

19

(30 replies, posted in General Discussion)

Hi KrisV,

Thanks for your reply.  I'm not depressed at all.  Just scared and worried about the results if I start chemo again.  That fatigue is really scary.   I understand what you mean about fighting the fatigue and loss of appetite with the anti-depressant.  I'll see about that as a boost. 

I want to continue the chemo if it's working but wish there was a better way to deal with the fatigue.  My doctor has mentioned Ritalin to combat the fatigue so I'm willing to try that if I do get this chemo.   

Maybe I'll be feeling stronger on Friday.

Mary

20

(30 replies, posted in General Discussion)

Hi everyone,

I'm at lost as to whether my treatment is doing any good or not.   I am suppose to continue chemo - gemcitabine and irinotecan -  this Friday if my labs are good.  The last time I had any treatment was this same treatment on 2/14.  However, I got so weak and my platelets were so low they had to stop it.  So that's why nothing since 2/14. 

The fatigue is something I have never felt before, to this extreme.  I was not able to get out of bed or shower or eat.   I became jaundiced and that's when they found out my stent in the bile duct in my liver was clogged.   So on Monday, 3/24 I had a procedure that cleaned out the stent.  They left it in because they said it's easier and then put another one inside that one.  Both are opened and working well.  By the next day, after the procedure, my bilirubin went down two points.  I don't seem to be jaundiced anymore. 

My question is should I continue chemo if I have the option on Friday?  I'm still very fatigued but able to get up and do every day tasks.  I want to continue to fight this but the fatigue really scared me.

Please help me with any advice you can give.

Thanks and peace to everyone,
Mary

Thank you everyone for your prayers, kind words and warm wishes.  They mean a lot to me.  I'm getting stronger every day and that is making me happy.  I have chemo - gemcitabine and irinotecan - this Friday and that scares the heck out of me.  My quality of life has changed but it is still worthwhile to try and continue to live.   The irinotecan is what gives me the extreme fatigue.  Doctor gave me Ritalin for that and I'm hoping it will help. 

I always keep everyone here in my prayers and will continue to do so, including our caregivers, who give up so much of their life to be with us.

Thank you moderators.  Without you we wouldn't get the info we need from this web site.   You work tirelessly for us and we all so appreciate it.

Stay well Percy and continue the good fight!

Love, Peace & Hugs,
Mary

Darla & Lainy,

Thank you so much for the kind words.  I'll fight this as long as I can.  I'm not a quitter!!!  I'm hoping to get some strength back.  I'm fortunate that the stents are working and my bilirubin is coming down.

Kris - I kept your phone number.  When I'm feeling stronger I'm going to call you and "steal" some of your strength and hope!!! 

Thanks Kris and Lainy,

I'm very weak and barely eat.  I fear this is the end but I hope not.

Take care,
Mary

24

(26 replies, posted in General Discussion)

Hi Kris,

Sorry work is making this more difficult for you.  Not something you need right now - or at all! 

Also sorry Mark is having so much trouble with his mouth but hopefully his mouth will heal quickly and he can get back on his chemo and radiation.  I think it's good to give him a break before it gets so bad he doesn't eat or drink anything.  You don't need him losing weight now.

Best of luck to both of you.  I hope work can find it somewhere in their hearts to be more understanding, and compassionate, for what you are going through.

Stay strong as you always do.

Peace, Love & Hugs,
Mary

Hi Kris,

I've been out of touch for awhile due to liver problems.  My stent was clogged and caused me to become jaundiced.  They were actually able to put another metal stent inside the old one, and after they cleaned it out, my bilirubin started coming down the next day.  I came home from the hospital yesterday.  If all goes well, I'll start chemo again on 4/4. 

Anyway, I'm glad you seem to be continuing to do well on the trial.  Stay strong!!!  That's all we can do with this horrible disease.

Love, Peace & Hugs,
Mary