Topic: Nearly four years survivorship

I'm sorry that I haven't been around lately. Devoncat's passing and a few others (off the top of my head:  Teddy, Rick, Dave) were devastating and I had to take a break.

This coming August will mark four years of survivorship for me.  I know that is not typical and I thank God every day that I am still around.  I have been in Stage 4 for about 2 1/2 years now with mets to the lungs.  The liver has been ok-ish for a while but I'm seeing some negative signs that all is not well in that area.  But since there is nothing I can do about it, I'm just letting it go.

I've been through about a dozen or so different chemo regimens, until my oncologist ran out of tools in his toolbox.  I am currently under hospice care.  Everyone is different with hospice care.  For me, it means that I don't have chemo anymore, and I have a nurse, a social worker, and a massage therapist who visit me every other week.  All meds go through the nurse.  It's been working out ok. 

One thing that I need to remember is that I am ill.  I feel normal and do things, like weeding my backyard, then I collapse from exhaustion.  I need to learn to conserve my energy and be on a more even keel.

Anyway, I am so very grateful that I have had the opportunity to see my youngest graduate from high school, my middle child get married to a wonderful man, and my oldest graduating from college in August.  I have been given the opportunity to be with, support and love my children and my parents.  I've also grown so much spiritually.  I try to see the best in things, and God's hand in all things - whether we understand or not.

I pray every day for a cure, for those of us struggling as patients and caretakers, and the wonderful people behind the cholangiocarcinoma foundation.  Every one of you are doing the best you can.  Thank you all.  God willing, there will be a cure, and soon.

Re: Nearly four years survivorship

Hi,Lisa,
From the bottom of my heart and as a patient myself ,I admire your courage and endurance.
May the Love and Protection of our Lord,Jesus Christ,be always be with you and your family.
God bless.
PCL1029

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Nearly four years survivorship

Lisa,

So good to hear from you.  I often check your website.  Understand why you "haven't been around lately".  I feel the same way, but I keep checking for news from those such as you.

This month is my 2 year anniversary for inoperable stage 4.  Your faith is an inspiration to me.

Kathy

Re: Nearly four years survivorship

Great to hear from you Lisa! You are a true inspiration with how you attacked this disease and not let it take your spirit! Boy you have been busy with all those wonderful milestones! My husband Doug, like you, pushes himself with projects and activities then collapses from exhaustion too. He feels better about himself when he accomplishes things, though. I too pray for a cure and hope it comes soon enough for all you courageous patients out there. Take care Lisa. Hugs. Nancy

Loving my husband from afar.

Re: Nearly four years survivorship

Kathy,  Another inspiration! Love it! You gals give me a lot of hope for my wonderful husband Doug who is courageously fighting stage 4 with you; and so many others as well. Keep kicking butt! Hugs. Nancy

Loving my husband from afar.

Re: Nearly four years survivorship

Hi Lisa.....I have been reading up on your caring bridge site and can hardly keep up with everything happening in your life.  You are a very busy lady.  The wedding sounded just beautiful and I can't wait for you to post the pictures.
Know that I think of you often.  We have shared much joy within these last four years and we have comforted each other through the losses. 
And we will continue to support each other until a cure is found for this disease.
Hugs and all my best wishes are coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Nearly four years survivorship

Hi Lisa,
Just in the last couple of days I was wondering why I hadn't seen any posts from you. It's good to hear from you though I understand your absence. For now, I'm just down the road a bit in Seattle so we're kind of neighbors. I too try to see the hand of God in my circumstances and am so grateful for His grace and mercy. I pray that He will allow you many more milestones and memories. Grace and peace to you...

bob

Re: Nearly four years survivorship

Hi, Lisa, girl!!!  So good to see you here again as I had been thinking about you lately! You are totally awesome.My goodness we have been together a long time! You have such a  story of hope for everyone and we love that. I am also elated that you got to be part of the milestones in your children's lives. That is terriffic. Keep that faith and your fighting spirit. Please let us hear from you as you can...we love you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Nearly four years survivorship

Hi Just reading your posts and I feel inspired !!! Even though I am i  Australia, I found this web page  and can't stop reading.  My father in law has just been diagnosed with this cancer. His specialist is on holidays at the moment and we have to wait for him to return to find out his treatment, can you believe that.  The specialist has been treating him for the past 2 years for stomach pains and Eddy has just been diagnosed now. We are just starting to ask questions as no one can tell us much. He has to have a stent put in next week and the bag which is draining his bile is on the outside of his body at the moment. They are going to put the bag inside his body. Dr has warned that he could get infections. Is this common? I have so many questions needing answering and probably sound very uninformed about this at the moment. My questions probably sound silly, but I am sure I will get better aswe go along...??? Anyway, I love reading about the terrific fight that many patients are putting up and it is uplifting to hear about people still fighting years after being diagnosed !! Awesome !!

Re: Nearly four years survivorship

Dear Sonia, welcome to our wonderful family but sorry you had to join us. We have several Aussies aboard! You ask anything you want as no question is silly at all, only silly people who won't ask! Yes, infections are common with any stenting. You will want to watch for chills and fever, should they occur. Has this Doctor told you where the CC is located or anything about it at all? Most important, has this doctor had experience with CC. We are big, firm believers in 2nd and 3rd opinions so do not hesitate to try another doctor if you have any bad gut feelings about this one. Interesting that it took 2 years to diagnose! What comes to my mind is, if  no one can tell you anything maybe you are at the wrong place. Just ask away we will answer as much as we can. I am glad you have been reading up on us as knowledge is powerful for CC. At the top of the page is a Search engine, type in a word and posts on that subject will appear. If I may make one suggestion, re post your first one under Introductions as I am afraid it will get lost on this rather long thread. I know you will get many more answers that way. Best of luck to you and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Nearly four years survivorship

Lisa, I wish you the best in your continued fight against CC. I am in about the same position as you although I am not quite as far along. My diagnosis was January 2010 and chemo failed but a direct chemoembolization to my liver tumor did suppress growth. I suspect my liver tumor is growing again and will have a CT today but I feel well and am actively participating in my art gallery and shows. My faith carries me through and wonderful family and friends have provided me support all along. I pray for all on this site......
Charlea

Re: Nearly four years survivorship

Charlea,  Nice to hear from you. You are an inspiration to many on the board here. Would love to see some of your pictures! I am sending positive thoughts and prayers for a good CT.  Hugs. Nancy

Loving my husband from afar.

Re: Nearly four years survivorship

Hi all - well I am still alive and kicking.  I was diagnosed August 15, 2007.  Everyone is stunned that I've been fighting this cancer for four years now.  All I can say is that God isn't done with me yet.  I continue in reasonably good health, although I do get tired easily. 

There is Hope! 

Love to all,
Lisa

Re: Nearly four years survivorship

Nancy246, when I learn how to send pictures I might try to do it. I show in the Garry Oak Gallery in downtown Oak Harbor and we do have a website. I have not looked at it lately to see what pictures are on there. Art has been a lifesaver for me in more ways than one.

Re: Nearly four years survivorship

Lisa you exude hope! Keep kicking butt girl! Hugs. Nancy

Loving my husband from afar.

Re: Nearly four years survivorship

Congratulations!  May I ask - was your cancer operable?  You are showing me great faith and hope in the future!  My dad has been diagnosed with stage 4, inoperable.

Keep up the faith and healthy living!!

Suzanne

Re: Nearly four years survivorship

Ask away!  In March 2008 a surgeon in Seattle attempted a resection of the tumor or partial resection of the liver.  Unfortunately, the tumor was wrapped around the inferior vena cava, so it was considered inoperable. 

I am now in hospice care, and it is a good thing. I get bi-weekly visits from a massage therapist, nurse, and social worker.  They are very helpful to see to my needs.  I'm still living at home with my adult children, so they can help out where needed.  Really, life goes on and I feel the same.  Except tired and swollen.  I just don't like my puffy face from the steriods!  Today I got a hair trim to even up the flyaway strands.  I'm going to try a little mousse to see what happens smile

Re: Nearly four years survivorship

Thank you!  I am sorry that you have to deal w/this, however you have giving me HOPE!! 

My dad was diagnosed with inoperaly CC in July.  He will start his 2nd round of Chemo on Friday - Gemzar and Cisplatinum, 3 weeks on 1 week off.  on his 3rd week of the 1st round his platlets were too low so Chemo was canceled - so he got 2 weeks off.

Reading the statistics really puts fear and very little hope in my thoughs - but you are a new inspiration to me!  To know that you have, and continue to survive this horrible diease with out resecution is wonderful news to me!

Thank you  - continue your fight and my GOD Bless You and your family!

Suzanne

19 (edited by AppreciateHelp Mon, 05 Sep 2011 04:20:18)

Re: Nearly four years survivorship

Hey Lisa... You can be on my team any time!!! 

I am a caregiver:
My husband had Whipple surgery in June 2010 followed by chem/radiation; now we've just learned of cancer recurrence x 3 in the surgical bed area and chemo is being doneonce again.  I pray eyes open, eyes shut, anytime, and anywhere that God heals him.  And I pray that God sprengthens me so I can care for him above and beyond. 

Reading your post I can see the strength in YOU.  So just know how inspiring you are to me and others.  God Bless you, "For with God nothing shall be impossible." Luke 1:37

Re: Nearly four years survivorship

Dear Lisa, If there is an after life and I hope there is, I want to tell you that I would have loved to have corresponded with you.  I have read many of your posts and will continue until all are read.  What an inspirational and brave person you have been throughout this terrible ordeal.  Although you were very sick, you continued to care about others. I am sure you are missed, but please know your spirit is with me and your postings are motivating me to stay strong and brave, just like you. Thank you for all your posts and being a great example of what bravery is all about.  I would have loved to have known you. Sincerely, Patricia

Re: Nearly four years survivorship

Lisa,
You are an inspiration..thank you for sharing your life with all of us.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider