Update on Linda
This third time has raised more issues of tolerance and will to tolerate, if you know what I mean. She's asked aloud several times if this is all "worth it." Her health is generally good so she rebounds from those moods pretty quickly, but I'm sure many of you can relate to being sick (no pun intended) of dealing with treatments and giving your life over to these regimens for 6 months. This time we're trying to shrink a tumor near the base of her pelvis, which is a lot different than anything else we've done. So the future is unknown.
I'm just trying to keep her spirits up and get out for walks when we can. One day at a time.
Chris Cudworth
Comments
-
Bless you Chris
You are a good caregiver. I do realize how difficult this is for you husbands out there. You do not get near the support we get!!! I am on cisplatin and gemzar and find it pretty easy to take other that loss of hearing (cisplatin) and I get very sleepy. Saundra0 -
Cisplatin
Hey Chris,
Cisplatin is a really tough chemo. It knocks most people down pretty badly. My Mother could only have 2 rounds of it before her kidneys gave out. I know how hard it is to watch this process and we told my mother that if she couldn't do more, then that was ok. So, she opted out of anymore cisplatin after 2 and they gave her a different chemo. Thanks for the updates, and hang in there. Make sure you take care of yourself as well. This is a marathon.....0 -
Hi Chris
I also get into those "is it all worth it" moods while recuping from a really hard infusion. Those moods usually don't last too long and I can imagine must be hell for the people trying their hardest to help us get through. My husband suggests going for rides when I'm weak and can't do walks. That helps me see that there is an outside world, helps me regain my perspective and has the added advantage that I don't even have to change out of my PJ's! I think you are lucky to have each other.
(((HUGS))) Maria0 -
Cisplatin
was the wors for me so far! I swear it worked on the dark side of my brain. I told my husband, I wanted to give up many times, but was able to hang on because of his patient care. In retrospect, I probably should have been on an ati-d's with cisplatin. They did lift once I finished that chemo.
Your wife is one blessed woman, to have you!
kathleen0 -
YES, ONE DAY AT A TIME, CHRIS
Thank you for the update on Linda. When I read what Linda said (is it all 'worth it') I immediately thought back to my recurrance in 2006, and what I said to my husband. That time around, the treatments really did a job on me. Not that they didn't the first time, but it just seemed that the second time was far worse. And I developed an allergy to Taxol during treatments and had to be switched to Taxotere. But the Carboplatin and Taxol made me feel so badly that I actually said to my husband, 'I will never do this again', that coming from someone who never complains and is always trying to stay positive and hopeful. I truly felt as though I was 'fading away'. My reaction was severe, so my response was understandable.
As time went on I knew what to expect so I was always prepared with some home measures to get through it. Wasn't easy, but now I could understand why some people wouldn't want to explore the chemo option. Guess it all depends on your individual circumstances. This is all just to say to you that I truly understand how Linda feels, but those are the moments when we are at our weakest. And as you said, one does rebound and finds the strength and resolve to do it all over again if need be.
Sending lots of prayers to you and Linda. You're right - one day at a time. We must live in the moment, trust and rely on the Lord and loved ones to get us through. Linda is a fighter. Good idea to choose a health care facility to make things easier. Looking forward to more updates.
(((HUGS))) & PRAYERS
Monika0 -
I understand
exactly what Linda is going through. My post on 9/24/2010 "someone help me" sounds exactly like what she is going through. After that post I ended up in the hospital again with low levels of potassium, magnesium and calcium. The ER doc said he never saw a potassium so low and another doc said she didn't know how I made it. By the time we got to the ER I was having trouble speaking and was petrified I was having a stroke. This was attibuted to low potassium. I also had fainted at home and hit my head and back. I got a cut on my head that bled profusely. My son cleaned me up and had to get me up off the floor. I had no underwear on and I kept telling him not to look. My poor son.
Thanks to the many people who responded to my post with words of encouragement. Many sugggested I was depressed. I beg to differ with that. I have faced my cancer with optimism and hope. I try to take each day at a time and although I admit I have pictured my funeral a couple of times, but I try not to go there or anywhere near death. When I feel sick it is not so easy to be hopeful.
The good news is that my doc has decided I will not have the last infusion. So here I am at the end of my treatment and after my hospital stay I am well. I am still weak, shaky and my legs are rubbery but at least I know my counts are good and I just need to get stronger. Now I am going to start planning some fun stuff. I am having my usual Halloween get together. My son's 30th birthday is November 13th. Everyone wants to take me somewhere. I am a big homebody so that will take some thinking but I would like to do some fun things; maybe some day trips for starters.
So Linda and anyone that feels like "what's the point", don't make decisions when you don't feel good. As difficult as it was, I would have done that last infusion. But sometimes you have to vent and people should let us do that.
Love, Karen0 -
PTLsaundra said:Bless you Chris
You are a good caregiver. I do realize how difficult this is for you husbands out there. You do not get near the support we get!!! I am on cisplatin and gemzar and find it pretty easy to take other that loss of hearing (cisplatin) and I get very sleepy. Saundra
Saundra,
I am glad that Cisplatin/Gemzar is working for you. I became allergic to Cisplatin it do several things to me that the others did not!!
I do have a little ringing at times in my ears and that is from cisplatin.
I am tired a lot too but I think that my body is just tired of being on chemo so much.
It is so good to see and hear from you!!
Love you,
Libby0 -
Hi Chris,
I've never been on
Hi Chris,
I've never been on cisplatin (and I hope I never have to), but I think it is wonderful
that you are looking out for our girl.
Please keep us posted.
Sincerely,
Sharon0 -
Thanks everyonekikz said:I understand
exactly what Linda is going through. My post on 9/24/2010 "someone help me" sounds exactly like what she is going through. After that post I ended up in the hospital again with low levels of potassium, magnesium and calcium. The ER doc said he never saw a potassium so low and another doc said she didn't know how I made it. By the time we got to the ER I was having trouble speaking and was petrified I was having a stroke. This was attibuted to low potassium. I also had fainted at home and hit my head and back. I got a cut on my head that bled profusely. My son cleaned me up and had to get me up off the floor. I had no underwear on and I kept telling him not to look. My poor son.
Thanks to the many people who responded to my post with words of encouragement. Many sugggested I was depressed. I beg to differ with that. I have faced my cancer with optimism and hope. I try to take each day at a time and although I admit I have pictured my funeral a couple of times, but I try not to go there or anywhere near death. When I feel sick it is not so easy to be hopeful.
The good news is that my doc has decided I will not have the last infusion. So here I am at the end of my treatment and after my hospital stay I am well. I am still weak, shaky and my legs are rubbery but at least I know my counts are good and I just need to get stronger. Now I am going to start planning some fun stuff. I am having my usual Halloween get together. My son's 30th birthday is November 13th. Everyone wants to take me somewhere. I am a big homebody so that will take some thinking but I would like to do some fun things; maybe some day trips for starters.
So Linda and anyone that feels like "what's the point", don't make decisions when you don't feel good. As difficult as it was, I would have done that last infusion. But sometimes you have to vent and people should let us do that.
Love, Karen
Sorry I missed a stitch of time here but want to thank you all for your insight. The second chemo with Cisplatin went a little better because Linda said "screw the steroids" once we moved to another hospital (to get treatment closer to home...we'd been driving 40 miles to a good hospital but wanted to reduce stress going into winter.) So this other hospital said, "Well, you don't necessarily need the steroids. We give you a little drip when the chemo goes in...but there are other ways to handle the nausea." And so far that worked.
So that one week is tough. But yesterday Linda felt well enough to allow a local trip. So we bought high-quality burgers and had a picnic at a forest preserve and a walk with our pup Chuck. Then we drove out into the stripped autumn fields to a farm I'd seen on my bike ride Saturday and bought pumpkins in the bright autumn sunshine. God, I tell you, it was the first time we felt normal in quite a while. So we're grateful that the other two rounds are reasonably tolerable.
PLUS!!!! the tumor has reportedly (according to gynecological oncologist) shrunk 50% after just 1.5 rounds of treatment. 4.5 to go!
We realize we may never free her completely of this disease. The patterns indicate otherwise. First diagnosis 2005. Then recurrences in 2007 (a rough one) and now 2010. We just pray we can manage this, although her hands and feet get number, her hair's thinning, etc. God bless the girl. Never dreamed when we married 25 years ago we'd go through anything like this. You can all relate.
And with cancer in my family history, especially skin (but more...) I must be vigilant as well.0 -
Good observationskayandok said:Cisplatin
was the wors for me so far! I swear it worked on the dark side of my brain. I told my husband, I wanted to give up many times, but was able to hang on because of his patient care. In retrospect, I probably should have been on an ati-d's with cisplatin. They did lift once I finished that chemo.
Your wife is one blessed woman, to have you!
kathleen
I re-read your comment and I think this is spot on, Kathleen. Succinct, and spot on. It's not always sudden either. Sometimes her mood seems to darken with a bit of time. So it's hard to predict how her brain is going to respond. I've encouraged her to track her different responses to chemo but she's just not a journaly type! So I might, because the empiric information on how's she's responded is key to me.
We did find out that Linda's tumor apparently shrank 50% after 1 2/3 rounds, and her CA-125 dropped from 60 to 40. So there is progress.
Thanks again for your observations. It sounds like your husband is a good man!
Chris0 -
Thanksmopar said:YES, ONE DAY AT A TIME, CHRIS
Thank you for the update on Linda. When I read what Linda said (is it all 'worth it') I immediately thought back to my recurrance in 2006, and what I said to my husband. That time around, the treatments really did a job on me. Not that they didn't the first time, but it just seemed that the second time was far worse. And I developed an allergy to Taxol during treatments and had to be switched to Taxotere. But the Carboplatin and Taxol made me feel so badly that I actually said to my husband, 'I will never do this again', that coming from someone who never complains and is always trying to stay positive and hopeful. I truly felt as though I was 'fading away'. My reaction was severe, so my response was understandable.
As time went on I knew what to expect so I was always prepared with some home measures to get through it. Wasn't easy, but now I could understand why some people wouldn't want to explore the chemo option. Guess it all depends on your individual circumstances. This is all just to say to you that I truly understand how Linda feels, but those are the moments when we are at our weakest. And as you said, one does rebound and finds the strength and resolve to do it all over again if need be.
Sending lots of prayers to you and Linda. You're right - one day at a time. We must live in the moment, trust and rely on the Lord and loved ones to get us through. Linda is a fighter. Good idea to choose a health care facility to make things easier. Looking forward to more updates.
(((HUGS))) & PRAYERS
Monika
I meant to write back to everyone who responded to our update and haven't gotten around to it. I noticed you joined this group April 2003, so you've been through a lot as you indicate, and you're observations are valuable. Thanks also for your prayers as we've found so much support in that regard.
Good news right now is that the tumor has dropped 50% in size and her CA-125 appears to be dropping. Today's another 7 hour Cisplatin treatment so the next week is a challenge.
Chris0 -
Strength to youkikz said:I understand
exactly what Linda is going through. My post on 9/24/2010 "someone help me" sounds exactly like what she is going through. After that post I ended up in the hospital again with low levels of potassium, magnesium and calcium. The ER doc said he never saw a potassium so low and another doc said she didn't know how I made it. By the time we got to the ER I was having trouble speaking and was petrified I was having a stroke. This was attibuted to low potassium. I also had fainted at home and hit my head and back. I got a cut on my head that bled profusely. My son cleaned me up and had to get me up off the floor. I had no underwear on and I kept telling him not to look. My poor son.
Thanks to the many people who responded to my post with words of encouragement. Many sugggested I was depressed. I beg to differ with that. I have faced my cancer with optimism and hope. I try to take each day at a time and although I admit I have pictured my funeral a couple of times, but I try not to go there or anywhere near death. When I feel sick it is not so easy to be hopeful.
The good news is that my doc has decided I will not have the last infusion. So here I am at the end of my treatment and after my hospital stay I am well. I am still weak, shaky and my legs are rubbery but at least I know my counts are good and I just need to get stronger. Now I am going to start planning some fun stuff. I am having my usual Halloween get together. My son's 30th birthday is November 13th. Everyone wants to take me somewhere. I am a big homebody so that will take some thinking but I would like to do some fun things; maybe some day trips for starters.
So Linda and anyone that feels like "what's the point", don't make decisions when you don't feel good. As difficult as it was, I would have done that last infusion. But sometimes you have to vent and people should let us do that.
Love, Karen
Karen: I hope you're recovering well. I like your advice: Don't make decisions when you don't feel good. I'll share that with her.
Chris0 -
Just checked in Chris to see
Just checked in Chris to see how things were going with Linda and I am estatic
to see that the tumor has begun to shrink!
There are so many ups and downs that one experiences with cancer, so again I reiterate as the others have so truly stated: Take a deep breath and realize you have to fight this one day at a time.
It will get better and this too shall pass and get better for you and Linda.
Hang in there,
Sharon0
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