I'm back...
apache4
Member Posts: 272 Member
Hi everyone,
It has been quite awhile since I last posted, but things are much better now. I am Stage IV dx 6/06 with no treatment options left. I won't go into all that now...too lengthy.
I had horrible pain in my right hip and back which made it impossible to sit, walk for more then 10 steps, etc. My onc at Moffitt would not even address the pain issue and told me to find an ortho. No referals or anything...
I found a great guy not far away who sent me for all tests...bone scan for possible mets to bone, MRI of area. All showed basically the same as five years ago when I was put on SSDI for fractures in my scarum bone and all sorts of arthritis. (I am 64) When I told him my onc doc experiences he insisted I change oncs and recommeded someone locally. Well, this new onc is so wonderful! Oh...the ortho guy also prescribed pain meds so that I could survive the dreadful pain and renewed them until I got settled with the new onc.
BAck to new onc...He said that I could try Xeolada, but since the pain was coming from the bone issues, I should think about it. It was that or Hospice. He was not a downer at all and I choose to deal with this realistically and my "hope" is enjoying each moment of each day.
So, I am now hooked up with hospice...wonderful care...just started last week. My daughter also hired someone to come in once a week to do laundry, shop and keep up kitchen and bathroom. Hospice nurse comes once a week. My son and family come at least 5 days a week...so now that I have thing under control, I am very happy with my decisions.
One of the most agonizing ones was to give over my two wonderful Newfoundland Dogs to their rescue organization. They got picked up a week ago and are doing well until they find their new homes. This was one of those things I dreaded from Day One of diagnosis. Since I moved here in February, one of the first things I did was submit an application to join the Newfie club, tell them my situation. Since I have been mentally preparing for 2 1/2 years it was a little easier then I anticipated and I do still have my little mini-poo and five cats for company. I was able to make the "call" to rescue when I realized that their quality of life was very poor compared to what once was. They need love that I could no longer express to them.
All for now. I will try to catch up with all the posts!
Love to all.
Linda
It has been quite awhile since I last posted, but things are much better now. I am Stage IV dx 6/06 with no treatment options left. I won't go into all that now...too lengthy.
I had horrible pain in my right hip and back which made it impossible to sit, walk for more then 10 steps, etc. My onc at Moffitt would not even address the pain issue and told me to find an ortho. No referals or anything...
I found a great guy not far away who sent me for all tests...bone scan for possible mets to bone, MRI of area. All showed basically the same as five years ago when I was put on SSDI for fractures in my scarum bone and all sorts of arthritis. (I am 64) When I told him my onc doc experiences he insisted I change oncs and recommeded someone locally. Well, this new onc is so wonderful! Oh...the ortho guy also prescribed pain meds so that I could survive the dreadful pain and renewed them until I got settled with the new onc.
BAck to new onc...He said that I could try Xeolada, but since the pain was coming from the bone issues, I should think about it. It was that or Hospice. He was not a downer at all and I choose to deal with this realistically and my "hope" is enjoying each moment of each day.
So, I am now hooked up with hospice...wonderful care...just started last week. My daughter also hired someone to come in once a week to do laundry, shop and keep up kitchen and bathroom. Hospice nurse comes once a week. My son and family come at least 5 days a week...so now that I have thing under control, I am very happy with my decisions.
One of the most agonizing ones was to give over my two wonderful Newfoundland Dogs to their rescue organization. They got picked up a week ago and are doing well until they find their new homes. This was one of those things I dreaded from Day One of diagnosis. Since I moved here in February, one of the first things I did was submit an application to join the Newfie club, tell them my situation. Since I have been mentally preparing for 2 1/2 years it was a little easier then I anticipated and I do still have my little mini-poo and five cats for company. I was able to make the "call" to rescue when I realized that their quality of life was very poor compared to what once was. They need love that I could no longer express to them.
All for now. I will try to catch up with all the posts!
Love to all.
Linda
0
Comments
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What love!
You took my breath away! I KNOW your Newfies will be adopted into a loving, caring home...I can just feel it!!!!!
You have been on my mind recently. I hadn't heard much, and this can be not good in some situations. I am so glad that you are in comfort now...and with a team that is caring and supportive.
I will use your story (anonymously, of course) with my patient partners. You are doing what I tell them to do....taking care of yourself! And make the choices that will make their lives easier. Let other things slip away.
A tear is sliding down my cheek.
Warm Hugs, Kathi0 -
Your story
Your story is a beautiful testimony to making your own decisions and handling your situation in the way that makes sense to you and brings you comfort. How lovely! I'm glad you have such a good team working with you now, and I hope you have many good days to come.
With love,
Gail0 -
You Are an Inspiration
Linda,
I start to reply to this post, and I keep starting over. You are so awesome, it seems there is nothing anyone could add to help you with this battle. I have always enjoyed hearing from you and reading your posts; this is quite bittersweet. I pray that you can enjoy each moment in each day ahead. God Bless you!
Faith0 -
I don't think we have every e-mailed directly, but
you were on my mind the other day, when I was driving home from my CT scan. Your posts have always made an impression on me, and your post about stopping treatment that made you feel sick really made me think. I hope that with you new oncologist and pain relief with the ortho problems you do well and are happy.
I totally understand about the dogs, I had a cocker spaniel. He died a month after I finished treatment - about a year ago. I have chosen not get another dog.
I am currently waiting on CT results after a weird CEA.
I send you hopes and prayers. I think you have been an inspriation to many.
Pam0 -
I was relieved to see you post...
Linda,
I have thought of you often (even though I don't know you and have been mostly a lurker on this site). Your courage has been such an inspiration. My mom, 65, and diagnosed stage4 back in Aug '07, is at the same point as you. She had started erbitux as her 3rd line, but 4 weeks into it, her Kras test proved her to have the mutation. We had kinda figured as she had almost no rash, etc... She is trying Xeloda, but her onc. doesn't seem too optimistic. We are all trying to keep hope, yet realistically enjoying each precious moment. I pray that my mom is able to enjoy the holidays, as that is my wish for you. I pray for good pain management, strength and peace. Again, I am so happy to see you post. God bless you and your family.
Laura0 -
So glad to hear from you
Linda, we have all been missing you here! It was so good to finally see a post from you, although it brings tears to realize how much pain you have been in. This sucks all around, but it sounds like you are doing an awesome job of dealing with life and doing what needs to be done; probably the HARDEST part of all of this. We have to do what nobody else wants to do. I pray that your doctors are able to walk with you, bringing you and your family peace and the months go by!
mary0 -
Thinking of You!
Dear Linda,
How selfless of you to think of your dogs right now.
I am so thankful you found an oncologist who offered you options and let you make the decisions that were best for you.
I wish you lived closer so I could offer you more than just cyber hugs and support. I pray for your comfort and hope that each day you will be surrounded by the things you love.
Love,
Kay0 -
Heart warming
Hi Linda,
Your post is so heartwarming to me. I do hope that I will be making decisions as gracefully as you have when treatment is no longer working for me. You are a very caring person and I am happy that you are in control of things in your life. I hope and pray that you will enjoy each moment of everyday. Warm hugs to you, Audrey.0 -
Wondering
Hi Linda,
I have been wondering about you, and I'm so glad to hear from you again. You are a true inspiration to the rest of us. Your poise through everything stands as an example of true grace. May God give you all the grace, peace and comfort you need. We all love you.
Kirsten0 -
sending hugs!!
I am sending hugs and as always prayers. My heart goes out to you as you have to make some difficult choices. May you find peace with your choices and I am glad that you found a doc that will help you and will get your pain under control. Noone should be in pain.
Maureen0
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