Didn't have to make the decision....
camul
Member Posts: 2,537
My doctor made it for me. Today I had my appointment with him. I was scheduled for chemo, Herceptin, Decadron and Xgeva. I had my vitals done, was accessed, my nurse started the Herceptin. Then I went in the examining room to wait for the doctor. He came in and asked me how the week went.
I told him I had the low-grade fever, 99.something last Monday when I was there. Told him it started the Friday before, 2 days after stopping the antibiotic, and between Monday and Friday morning, it bounced from 99 - 102, with the highest 102.4. He told me I should have called him or gone to the ER. I told him didn't know where it was coming from, other than the UTI back.
He then said we were not doing the chemo, we would finish the Herceptin, and the Xgeva. He again explained when the positive effects of treatment are outweighed by s/e and toll it is taking on your body, it is time to stop. I made him promise me at the beginning when I reached this point that he would be honest with me. This was one of the conditions I placed on having chemo again.
In 2 weeks, August 20th, I have a Pet Scan and CT, possibly an MRI following. I see him on August 27th. I see my hospice doctor this Thursday to start the Fentanyl. I am done with chemo for good, unless these scans end up being miracle scans.
He gave me the prognosis from here going forward. I sat and cried like a baby, and he cried right with me. Then my nurse (who really has become a good friend over the years) came in to remove the line, looked at me and she just sat with me for a few minutes and cried right with me.
Then the hard part. First my younger son text me from work to find out what I had decided, I was replying, when my older son called. When I heard his voice I couldn't stop crying, and felt so bad for making him so sad. This is not new news here, I knew this was coming, I have felt my body going south fast for the last few months. I have done so much better than was ever expected, yet, it is so hard now that the decision is made.
Honestly though, I am in bed more than out, and when I am active, I am down for the days following. I have had friends (and watched some when I was volunteering with hospice) who insisted on chemo up till the end and were chemo sick til their last breadth. I did not want this. My doctor has always referred to this as chemo junkies. He understands the hope part, but has said it is usually that the patient is getting pressured from family not to quit, so they keep getting it even though they know it is no longer helping enough to make a difference, but they don't want to let their family down.
He said my boys have talked to him about this, and what ever he feels is best, if I agree, they support. I am very blessed that I am doing this with the blessing of my family and my friends. Almost all of my sisters and one of my brothers know my doctor from when he was treating my mom, and they all trust him so this makes it much easier for me.
I thank all of you for being so supportive, and there are never too many prayers.
Love, Carol
I told him I had the low-grade fever, 99.something last Monday when I was there. Told him it started the Friday before, 2 days after stopping the antibiotic, and between Monday and Friday morning, it bounced from 99 - 102, with the highest 102.4. He told me I should have called him or gone to the ER. I told him didn't know where it was coming from, other than the UTI back.
He then said we were not doing the chemo, we would finish the Herceptin, and the Xgeva. He again explained when the positive effects of treatment are outweighed by s/e and toll it is taking on your body, it is time to stop. I made him promise me at the beginning when I reached this point that he would be honest with me. This was one of the conditions I placed on having chemo again.
In 2 weeks, August 20th, I have a Pet Scan and CT, possibly an MRI following. I see him on August 27th. I see my hospice doctor this Thursday to start the Fentanyl. I am done with chemo for good, unless these scans end up being miracle scans.
He gave me the prognosis from here going forward. I sat and cried like a baby, and he cried right with me. Then my nurse (who really has become a good friend over the years) came in to remove the line, looked at me and she just sat with me for a few minutes and cried right with me.
Then the hard part. First my younger son text me from work to find out what I had decided, I was replying, when my older son called. When I heard his voice I couldn't stop crying, and felt so bad for making him so sad. This is not new news here, I knew this was coming, I have felt my body going south fast for the last few months. I have done so much better than was ever expected, yet, it is so hard now that the decision is made.
Honestly though, I am in bed more than out, and when I am active, I am down for the days following. I have had friends (and watched some when I was volunteering with hospice) who insisted on chemo up till the end and were chemo sick til their last breadth. I did not want this. My doctor has always referred to this as chemo junkies. He understands the hope part, but has said it is usually that the patient is getting pressured from family not to quit, so they keep getting it even though they know it is no longer helping enough to make a difference, but they don't want to let their family down.
He said my boys have talked to him about this, and what ever he feels is best, if I agree, they support. I am very blessed that I am doing this with the blessing of my family and my friends. Almost all of my sisters and one of my brothers know my doctor from when he was treating my mom, and they all trust him so this makes it much easier for me.
I thank all of you for being so supportive, and there are never too many prayers.
Love, Carol
0
Comments
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I cried when i read your
I cried when i read your post,applaud your Dr.for being truthful with you.When time comes that enough is enough.Your boys sound very brave for you and glad they are going along with what the Dr.says also.It's time to have quality of life not quantity.Live,Laugh and Love because we never know what tomorrow will bring,i do be leave there is a reason for every thing in life i'm just not sure what they always are.My heart goes out to you and your family prays and hugs.
Hugs Frankie0 -
Carol....
I don't know what to say, other than I will keep praying for you....your oncologist sounds like a truly caring, compassionate doctor...I sense that he knew, for you to have to make the decision, would just be to difficult....especially considering your two precious sons...even grown our "kids" factor into almost every decision we make...and you didn't have to make the most difficult decision of your life....I am crying right along with you...breaks my heart....I care about you so much, even though we've never met face to face....not only are you a precious pink sister, I look at you as a treasured friend...
I don't need to tell you, to make every day count....but you know what? You may just fool us all! No one is guaranteed a tomorrow.....no one! And no one knows our "experation date" except God....
For someone who didn't know what to say, I've certainly run my mouth.....
My love to you...keep us posted when you feel up to it....
Hugs and prayers, Nancy0 -
Sad
Carol,
I'm so sorry for this. I'm crying as I write this. It is wonderful to have such a doctor who is honest. That can be a rare quality in doctors. Your sons are marvelous too.
I will keep all of you in my prayers. A friend of my husband's, his wife, has bone and lung cancer. She still does treatment but she hardly moves, won't drink or eat, etc. This to me is not living but exsisting. I hope to have your courage and grace if this happens to me one day.
Love & Hugs,
Janie0 -
Carol, I wish there was
Carol, I wish there was something I could say or do to help. I feel terrible and want the very best for you and your family. I lost my best friend to breast cancer (when we were 29 years of age). I do know that she too struggled and was one of those chemo junkies who took it right up to the very end. I admire and respect your decision and wished she too would have done the same thing. Now, 14 years later, I too have breast cancer. It makes me wonder what is in the water.....
Again, I wish you the very best and think you are the bigger person to not deal with chemo any longer. The important thing to remember is that you did not let cancer get the best of you. Your personality is still with you and your heart is as big as ever.
Love, Tonia0 -
You are so brave
Carol, you are so brave and you are dealing with this with such poise and strength. I can only hope that whenever the day comes for me whatever the circumstances, I can be half the person you are being right now. I continue to hope for you that the cancer hits a roadblock temorary or otherwise and you get a reprieve. In the meantime, I hope that you can spend quality time with your wonderful loving family.
All the best to you - you are in my thoughts.0 -
Carol, you are so honest and
Carol, you are so honest and brave. I admire you and the way you have included your family and healthcare team in your decision. What an amazing person you are! Please know that I am still praying hard and hoping the new scans do show a miracle. But either way, I am here for you. Please PM me if I can help in any way.0 -
Bear Hugs to You.
Carol... again I have to say, thank you for letting us walk with you, cry with you, and for being so honest with us. Your doctor sound so amazing. He sounds like a compassionate doctor who has also reached out to your sons and other family members.
I will continue to keep you and your family in prayer. You are handling a very difficult situation with such grace. I pray God grant you and your family peace of mind and heart.
God bless, big hugs to you dear one.
Love,
Ines0 -
I cry with you and your family
Because you are family to me. It's not easy to read something like this. BUT....it is a reminder to all that life is so precious.
I believe that miracles happen and I believe that God is with you. My mind thinks about how HootieGirl is doing now. It makes me feel that miracles do happen and it makes me pray that there is at least one more sitting just around the corner for you.
You have always been such a comforting supporter to me. I want to thank you from the bottom of my heart. You are special and a friend. I wish we could've met in person. Who knows? Maybe that can still happen.
I sit in awe of you. Please give your sons a hug from me. They are troopers and so supportive of you.
I love you all. Prayers as always. God Bless!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo!!!!!!!!!
Mary0 -
Oh Carol!
What an extremely difficult time you're having and been having! I feel so sad and the tears are falling for you and your sons. There are no words that will make a difference but to say I feel for you and I'm so sorry for your suffering. You've fought the fight and so honestly - you've blessed us with sharing all of you with us! Your doctor sounds marvelous - we all wish ours were like yours. I will keep you and your boys in my thoughts and prayers!
Love and hugs to all of you!
Karen0 -
Dear Carolksf56 said:Oh Carol!
What an extremely difficult time you're having and been having! I feel so sad and the tears are falling for you and your sons. There are no words that will make a difference but to say I feel for you and I'm so sorry for your suffering. You've fought the fight and so honestly - you've blessed us with sharing all of you with us! Your doctor sounds marvelous - we all wish ours were like yours. I will keep you and your boys in my thoughts and prayers!
Love and hugs to all of you!
Karen
you have become such a good friend to me--especially since I entered the Stage IV world in January. Your advice and encouragement have meant the world to me.
You seem to be truly at peace with this decision and I am glad for that. Your doctor and other medical providers sound like the most caring health team ever.
I am still sending positive energy and prayers to you, your boys and all your family. Lean on them--they seem so wonderfully supportive.
Love and peace, Renee0 -
My heart aches for you. I
My heart aches for you. I wish there was something I could do other than send prayers and thoughts of peace, comfort, and love. Your Doctor sounds like a wonderful person.
xoxo
Heatherbelle0 -
Carol sending you positive energy and hugsHeatherbelle said:My heart aches for you. I
My heart aches for you. I wish there was something I could do other than send prayers and thoughts of peace, comfort, and love. Your Doctor sounds like a wonderful person.
xoxo
Heatherbelle
Carol
Yes we all cry and hope for a miracle for you0 -
True heroes have courageHeatherbelle said:My heart aches for you. I
My heart aches for you. I wish there was something I could do other than send prayers and thoughts of peace, comfort, and love. Your Doctor sounds like a wonderful person.
xoxo
Heatherbelle
And you seem to be a true hero to me.. after reading your posts and encouragement to everyone here over the last couple months! You can tell how good of a job you have done with your boys..texting and calling you immediately while you were still in your appt!..
I've only known you so far by this discussion board--yet I can tell you are a hero by having a tremendous amount of courage and inner strength! You seem to be very selfless and always concerned for your family and for everyone here on this site.....
Thanks for showing me courage and selflessness...I look forward to your posts and replies for a long time!
Joyce0 -
prayers
Crying is good and I' m sure we have all done our share .... you are a remarkable person ... I like the promise you made together with your dr ..... sounds like you have a lot of family support willing to accept your wishes .... hang in there and stay positive! Things don't
always happen the way you think they will ... thanks for the post, that must have been so hard to write, but we are all with you from all over the country and world on this site ....prayers are with you from each of us! Sue D0
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