Callaloo celebrates 18 months anniversary
Callaloo
Member Posts: 135
18th months since they found this tumor, and I'm still going strong, clean CT and MRI's to boot. Woo hoo!
Thanks to Barb again for prompting me to post. I want my posts to be little rays of hope for those battling stage IV. But I have to admit the last few weeks have not felt very hopeful to me. I've been plagued for at least a month with pain throughout my abdomen and sometimes radiating all up and down my spine. Well they can find no specific cause of the pain, and with the recent CT and MRI of my spine, we've ruled out metastasis to the spine, so I've really had nothing but good news lately. We started a new pain management regimen last Friday that seems to be working out and, most importantly, getting me some much needed sleep.
It' a combination of Oxcycontin every 12 hours, and Oxcycodone for breakthrough pain, plus Atavan to help with sleep, nausea, and whatever else is bothering me at the moment. So I'm feeling pretty good this weekend. I didn't accompany my husband on his climb of Middle Sister, but I did go canoeing yesterday and had a great time.
So I feel I can shine a bright ray of hope out there today. And sorry I can't do it every day.
The doctors seem pretty confident that the clean scans are a result of the Xeloda. They feel it's working so they want me to keep taking it. I was really hoping to stop once I got a clean scan, but, unfortunately, my docs say they it''s been their experience that the tumors come back once the chemo stops. I'm really getting to resent having to take these pills, but I guess I'll continue for now. Aside from the back and stomach pain, which seem to be under control, I just have to contend with painful feet that feel like I'm walking on hot coals sometimes. No so bad, really.
I can't help but look back on September a year ago. I had recovered completely (or as near as possible) from the radiation and chemo, I felt great, I visited friends and relatives in 4 different states, I returned to work full time, I vacationed in the Caribbean. I want another 6 months like that --- maybe this winter. I WILL take that chemo break, just not yet.
I think about you all, all the time, most of whom are struggling more than I am. I've read several posts that I wanted to reply to -- Lee's struggle with eating, those nagging hiccups, because I have the same problems, I don't have a lot of answers, but I should share what I know--- I just haven't had the energy, but now with the new pain meds, I'll try to do better.
Thanks to Barb again for prompting me to post. I want my posts to be little rays of hope for those battling stage IV. But I have to admit the last few weeks have not felt very hopeful to me. I've been plagued for at least a month with pain throughout my abdomen and sometimes radiating all up and down my spine. Well they can find no specific cause of the pain, and with the recent CT and MRI of my spine, we've ruled out metastasis to the spine, so I've really had nothing but good news lately. We started a new pain management regimen last Friday that seems to be working out and, most importantly, getting me some much needed sleep.
It' a combination of Oxcycontin every 12 hours, and Oxcycodone for breakthrough pain, plus Atavan to help with sleep, nausea, and whatever else is bothering me at the moment. So I'm feeling pretty good this weekend. I didn't accompany my husband on his climb of Middle Sister, but I did go canoeing yesterday and had a great time.
So I feel I can shine a bright ray of hope out there today. And sorry I can't do it every day.
The doctors seem pretty confident that the clean scans are a result of the Xeloda. They feel it's working so they want me to keep taking it. I was really hoping to stop once I got a clean scan, but, unfortunately, my docs say they it''s been their experience that the tumors come back once the chemo stops. I'm really getting to resent having to take these pills, but I guess I'll continue for now. Aside from the back and stomach pain, which seem to be under control, I just have to contend with painful feet that feel like I'm walking on hot coals sometimes. No so bad, really.
I can't help but look back on September a year ago. I had recovered completely (or as near as possible) from the radiation and chemo, I felt great, I visited friends and relatives in 4 different states, I returned to work full time, I vacationed in the Caribbean. I want another 6 months like that --- maybe this winter. I WILL take that chemo break, just not yet.
I think about you all, all the time, most of whom are struggling more than I am. I've read several posts that I wanted to reply to -- Lee's struggle with eating, those nagging hiccups, because I have the same problems, I don't have a lot of answers, but I should share what I know--- I just haven't had the energy, but now with the new pain meds, I'll try to do better.
0
Comments
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Great to hear from youjojoshort said:Way to go
Keep focusing on the positive. So great to hear from you! I hope you get that chemo break and Caribbean trip soon,
Jo-Ann
Have been so worried about you as the last time you posted things were really rough. Been there done that. Glad that you are back on track now and feeling better. I am on my way to the hospital to have the port put back in and next week start on Taxotere for 4-6 cycles lasting over 5 months. If I can tolerate this, it should get me thru the winter. Also, they are doing the protein test on my original tumor tissue to see if I am a candidate for Herceptin. That would run with the Taxotere. Again I am so thankful that you are in a better place. Missed you. I will stay in touch after I meet with the oncologist again next wednesday. Sam0 -
Callaloo,
So good to hear
Callaloo,
So good to hear from you! Glad to hear you are working to get the pain under control. Rickie was having pain across his shoulder blades last night, but I feel pretty sure it was from standing in the yard with his arms up for over an hour yesterday pruning back the mesquite tree! My back would be sore too if I did that! rickie got the same answer when asking the doctor about cutting back on the chemo a little, so for now we continue with it. Hope all continues to go well for you.
Cheryl
Wife of Rickie dx stageIV EC Oct.20100 -
just so happy to hear how well you are doing!!unknown said:This comment has been removed by the Moderator
So glad to hear how great you are doing with the clean scans etc. No that the pain is no picnic but hope that pain regimen will work for you and give you more good moments than bad. It is a great sign of hope to hear how a medicine can work at keeping EC at bay. Love to hear the hopeful news, we all have faced enough of sad news here way too often. Prayers and good thoughts continue!! take care,
Donna700 -
So pleased to hear from
So pleased to hear from you,
I think we were all getting a little worried about you, so pleased that your scans have come back clean, hoping that the new pain regime will give you some relief. Glad to see you are still getting out and about.
Ann0 -
Always a ray of hope
So glad to hear your last CT and MRI were clean.
I've got to tell you the Jimmy Buffett and Zac Brown Band song Knee Deep, somehow brings you to mind every time I hear it played. I hope you have many days were your "only worry is if the tide will reach your chair" and that you can "find the keys to paradise"
Take Care and know your post have been little rays of hope.0 -
Happy to see your post.birdiequeen said:Always a ray of hope
So glad to hear your last CT and MRI were clean.
I've got to tell you the Jimmy Buffett and Zac Brown Band song Knee Deep, somehow brings you to mind every time I hear it played. I hope you have many days were your "only worry is if the tide will reach your chair" and that you can "find the keys to paradise"
Take Care and know your post have been little rays of hope.
And thank you for the help and support.
Joel0 -
Great to hear from youJoel C said:Happy to see your post.
And thank you for the help and support.
Joel
Callaloo,
great to hear from you and that you are still positive and able to go canoeing- I couldn't even do that when I was healthy!!
Take it one day at a time and keep focussing on the positives in your life. We just have to take one look at your profile photo to know how positive a person you are.
Take care
Danielle0 -
Just so we know you are
Just so we know you are doing okay. Sometimes its not just the physical fatigue but the emotional fatigue that gets to us as well. From everything going on in our lives and then reading some of the heartbreak here. But then there are days when the news is wonderful and we all thank God that we have had one more day with those we love, one more day to cherish the sunshine or hear laughter. And for those who have lost someone it beings us hope with every victory that someday people with this horrible disease may have an easier journey and one filled with statistics of 80 and 90% cure rates
And there is something to be said for the Caribbean in the winter - what a wonderful boost to our entire being trips like that can be. Take care of yourself and know I am thinking and praying for you.
Hugs and love,
Cindy0 -
glad to hear from you,unclaw2002 said:Just so we know you are
Just so we know you are doing okay. Sometimes its not just the physical fatigue but the emotional fatigue that gets to us as well. From everything going on in our lives and then reading some of the heartbreak here. But then there are days when the news is wonderful and we all thank God that we have had one more day with those we love, one more day to cherish the sunshine or hear laughter. And for those who have lost someone it beings us hope with every victory that someday people with this horrible disease may have an easier journey and one filled with statistics of 80 and 90% cure rates
And there is something to be said for the Caribbean in the winter - what a wonderful boost to our entire being trips like that can be. Take care of yourself and know I am thinking and praying for you.
Hugs and love,
Cindy
I, like many others here have been waiting to hear from you, hoping you are well. Glad to hear that you are still planning that Caribbean trip! I hope you have the time of your life! May you continue to recover and become stronger each day.
Chantal0 -
Thinking of You
Hey! Yee Haw cowgirl...you go! Thank you so much for posting your positive experiences. So great to hear your good news. You keep up the good positive attitude. Stay in touch. Many hugs to you.
Tina in Va0 -
Congratulations
I love seeing posts on small and large victories. Congratulations. I wake up all hours of the night in a panic state about losing my mom (trying to be positive but it's hard sometimes) but when I see posts like yours, I feel very positive. Please continue posting and I hope you have another awesome vacation coming up soon.0 -
congratulations isn't a strong enough word
Wow. Girl, I am so glad you posted. As one of the newbie Stage IVs, it is so refreshing to hear that you're fighting this thing tooth and nail. And winning. Thank you so much for the update. Congratulations. I just hope you can get this pain under control.
All my love,
Alissa
(daughter of Mike, IV)0
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