Papillary Renal Cell Carcinoma- Anyone Experiencing This, Is A Survivor? PART 2 - STILL GOING STRONG

AlwaysHaveHope
AlwaysHaveHope Member Posts: 29
edited March 2014 in Kidney Cancer #1
Since my original post entitled Papillary Renal Cell Carcinoma- Anyone Experiencing This or Is A Survivor? has become quite lengthy with over 89 posts on it, with the suggestion of a few of my fellow posting friends, I've decided to start a Part 2 so that we may more easily read our posts.

Today is the 1 month aniversary of having lost my mom. I've watched my mom battle her cancer for the past year and a half and tried to always be there for her, and as I have recently lost my mom, I feel even more of a need to keep on posting. I have corresponded with several people who I now consider to be good friends, who have offered me an incredible amount of support and strength and for who I am so grateful.

So, everyone....Maryann, Dawn, Donna, Babs, and everyone else.....Please keep on posting.

Carrie
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Comments

  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    Love you guys!
    Hello Ladies,

    Carrie, I just had to be the first one to respond to your new thread. I just want to say that I am so proud of you for the way you have handled the loss of your mom and the way you made the most of the time that you had with her. Bravo girl! I know that your mom is smiling down from heaven at you right now. You are my role model and inspiration.

    Just to prepare all of you, I'll probably post a lot this week. My husband is going up to Youngstown OH to spend the week with my fil and on Friday he is having additonal scans to see if his cancer has spread. Prayers and well wishes are greatly appreciated. I'll be staying behind here in KY to take care of our 3 small children.

    Happy 4th of July to all of you. Have a great week everyone.

    Love,
    Dawn
  • imbkuz
    imbkuz Member Posts: 52

    Love you guys!
    Hello Ladies,

    Carrie, I just had to be the first one to respond to your new thread. I just want to say that I am so proud of you for the way you have handled the loss of your mom and the way you made the most of the time that you had with her. Bravo girl! I know that your mom is smiling down from heaven at you right now. You are my role model and inspiration.

    Just to prepare all of you, I'll probably post a lot this week. My husband is going up to Youngstown OH to spend the week with my fil and on Friday he is having additonal scans to see if his cancer has spread. Prayers and well wishes are greatly appreciated. I'll be staying behind here in KY to take care of our 3 small children.

    Happy 4th of July to all of you. Have a great week everyone.

    Love,
    Dawn

    Thanks for Part 2
    Carrie I know Dawn is absolutely right...your mom is definitely smiling down at you. She's surrounding you with angels. I've never had the honor to meet such a fine young lady. I don't know how old you are but you seem wise beyond your years. Your mom must be so proud of you as is the rest of your family. I'm beaming with pride and I've never met you ..just by your posts. I might have said this before that my son is having a difficult time dealing with his dads diagnosis...advanced renal cell carcinoma stage IV etc., etc. They're close. As a matter of fact they just came back from walking. Carrie I wish your spirit would rub off on him. I can't believe it's a month since your mom's passing. I'm so sorry. How was today for you and what have you been up to or not up to? Are you taking time for yourself?
    How are the people at work treating you. I guess my main concern is have people been there for you? Well here's a cyberspace hug!
    Dawn...we'll be watching for your posts. Does your husband realize how lucky he is to have a wife like you. What a wonderful daughter in law. You know how you hear about those nightmare in laws....that's probably what I'll end up with or as:)
    What meds is your fil taking? You did mention it but I'm a little tired to go back 89 posts:) Was it Torisel? Is he still married and how is your mil taking all this? Or is that why your husband is going to Ohio to be with him? How has he been feeling lately? I will definitely be praying for your family extra hard.
    My hubby goes this Thursday for blood work and urine testing. What should normally be a couple of hours ends up a very long day but the doctor is definitely worth the wait. It's just very draining realizing that you're "there." I crash when we come home. Then in two weeks after Thursday the big CT scan to see if tumors got bigger or shrunk. Last time they got bigger but that was before the Sutent so I pray it's doing it's job. I still have days where I can't believe it. It was all a mistake and that he's fine and will go back to work. There are times where I can't hold back and just start crying wherever I am. I know that I'm not supposed to cry in front of him and sometimes that's so hard to do.We have a long story but it would take forever.
    Well enough babbling for tonight.
    All my heart
    Babs
  • AlwaysHaveHope
    AlwaysHaveHope Member Posts: 29
    imbkuz said:

    Thanks for Part 2
    Carrie I know Dawn is absolutely right...your mom is definitely smiling down at you. She's surrounding you with angels. I've never had the honor to meet such a fine young lady. I don't know how old you are but you seem wise beyond your years. Your mom must be so proud of you as is the rest of your family. I'm beaming with pride and I've never met you ..just by your posts. I might have said this before that my son is having a difficult time dealing with his dads diagnosis...advanced renal cell carcinoma stage IV etc., etc. They're close. As a matter of fact they just came back from walking. Carrie I wish your spirit would rub off on him. I can't believe it's a month since your mom's passing. I'm so sorry. How was today for you and what have you been up to or not up to? Are you taking time for yourself?
    How are the people at work treating you. I guess my main concern is have people been there for you? Well here's a cyberspace hug!
    Dawn...we'll be watching for your posts. Does your husband realize how lucky he is to have a wife like you. What a wonderful daughter in law. You know how you hear about those nightmare in laws....that's probably what I'll end up with or as:)
    What meds is your fil taking? You did mention it but I'm a little tired to go back 89 posts:) Was it Torisel? Is he still married and how is your mil taking all this? Or is that why your husband is going to Ohio to be with him? How has he been feeling lately? I will definitely be praying for your family extra hard.
    My hubby goes this Thursday for blood work and urine testing. What should normally be a couple of hours ends up a very long day but the doctor is definitely worth the wait. It's just very draining realizing that you're "there." I crash when we come home. Then in two weeks after Thursday the big CT scan to see if tumors got bigger or shrunk. Last time they got bigger but that was before the Sutent so I pray it's doing it's job. I still have days where I can't believe it. It was all a mistake and that he's fine and will go back to work. There are times where I can't hold back and just start crying wherever I am. I know that I'm not supposed to cry in front of him and sometimes that's so hard to do.We have a long story but it would take forever.
    Well enough babbling for tonight.
    All my heart
    Babs

    Okay, I just had a crying
    Okay, I just had a crying moment talking with my sister on the phone. We talked for over an hour and a half. I think that's the longest I've ever talked with her. We're 6 years apart in age; I'm 24 years old and well we've always been a little different from each other, mostly because of the age difference, I guess, but I find moments like tonight drawing us closer together as sisters. Anyways, I really got upset tonight, over dad and his comments about how much I had spent over groceries tonight (I know, groceries...it's a stupid thing to get worked up about). I guess, it had just been a rough day already, and after getting off work, and then having to go get groceries, it really got me upset when dad had to argue with me over how much I'd spent. I guess he's just worried, lately. It just doesn't help having to think about those things, on top of experiencing the emotions of grief.

    But anyways, I called my sister to have someone to vent to, and we started talking about mom and how much we missed her, and I told her how I've been contimplating on regrets and bad memories from when mom was sick, which I'm having a hard time with this past week. I seem to keep going back in my mind to mom's last night before passing and it kind of haunts me in a way. I guess it's just really hard right now to picture the good memories, because the loss of mom is so recent. But, talking with my sister really helped me tonight. I guess lately I've been trying to stay so strong and not show too many emotions, that all my feelings have been bottled up inside and it's getting to be too much, so I think I'm going to start talking with my sister more often, because it really helps to talk about these things with someone. You'll might get sick of me here soon, because I think I'm going to be posting a lot here lately, because I think what I'm experiencing right now is a delayed reaction to loosing mom and talking with you all, besides talking with my sister, is slowly helping.

    On another note:
    Dawn, thanks for the post. I really am hoping the best news possible for your fil for Friday's scans. I've got my fingers crossed and I'll be praying. It's good that your husband will be there to go with him. You don't know how much having someone with you when you're going through those kinds of things can seem to help calm one's nerves. When I went with my mom when she had scans, treatments, etc., I like to think it really made her more at ease to know someone she loved was there with her. I really hope your fil gets good news. He's lucky to have such good people as you and your husband there for support. Please let us know how it goes Friday when that day comes around. Got anything planned while your hubby's away, it being summer and all and no school and you being all alone with the kids? Thanks for the emails and updates and I hope we get to hear from Maryann soon.

    Babs, thanks for posting as well. (This gets pretty lengthy, just to warn you, but I feel like I need to say a lot right now to you and hopefully it will be of comfort and help). I know your son has to be feeling really bad right now. I think one thing that helped me was being there and being involved. I may have said this before, I'm not sure, but by being involved it makes you feel like you are needed and like "yes, there is something you can do to help". I think one of the reasons it is so hard is because you're sitting there watching this happen to your loved one and you're feeling helpless; like you can never do enough. Also, I think, talking about it can help. Maybe it might be a little easier for him if he got a chance to just have some father/son time together, where they could talk and he could not be afraid to ask questions about what's going on or about what his fears are. Maybe, even have a chance to have what I call an "almost normal" moment, because whether your the one with the cancer or you're the one watching someone going through it, things become different, there's a lot of changes, besides the fact that you now have this huge weight on you called "worry". Worry of the unknown or of what's going to happen to your loved one, added onto the sudden changes in your normal routines, can just make it all so difficult for one person to take. But like I said, everyone's situation is different and you have to do what's right for you/him. Me and my mom were really close; as close as a mom and daughter can ever be. We used to do everything together. There were things I could sit and talk about with mom that I could never talk about with anyone else. Mom was the personification of love, caring, nuturing, strength, determination, and much more. And I will always miss her. And I got to sit and talk with my mom one day (I remember) about my fears of loosing her and her not being there for those major milestones in my life. I can remember talking about those things with her and crying with her, and maybe it didn't make the situation easier, but I look back and think to myself how I'm thankful to have gotten moments like those to just be there with her. I'm not saying your going to lose anyone or that your son is going to lose his dad, but I'm just saying that having those moments like that can help. Please, reach out to your son and let him know that you understand and that I am here if he needs a person to talk to. Also, Babs I know that you are going through a lot too. When you said in your last post about how hard it is to hold back the tears, I really wished I could just crawl through my computer screen and come give you a hug, as you and others have said to me these past few weeks. Believe it or not, I know what you mean. You feel like by crying in front of him, you will make him upset even more. If there is one piece of advice I can offer, it's this: "just cry". I've held in my tears so many times that now it's all coming out at once in rivers. If you should happen to cry in front of him and he says anything, let him know it's just because you care so much about him. Crying is a normal human emotion and believe it or not it helps to cry. But, I know what you mean, though. I used to hold it to the point I didn't know what to do. So I used to cry in the car, in my pillow at night, on my way to work, at work, on the cell phone, and even while posting with you all on the computer. The thing to remember is, I think, that you can't hold it all in, like you've got this suit of armor on, because it eventually will eat you all up inside.

    You know, that's where I got my username "AlwaysHaveHope" from, because for the first year of mom's cancer, I was filled with so much hope that things would get better, that one day mom and I would get to go shopping together again, or I'd get to see her in the kitchen cooking again; no matter what... I always had hope, even when no one else around me did, and so I refused myself to cry. I can remember kissing my mom goodbye as they wheeled her into surgery on Feb. 1, 2008, no tears or anything, while my dad and sister cried their eyes out. My tears came later and lasted briefly, because I was filled with so much hope things were going to work out; that she'd survive her surgery (which she did), I kind of felt like I had a "suit of armor" on that kept me from being emotional because for some strange reason I felt obligated that I had to be strong for everyone else around me. The only problem with that was that I was really just ignoring the feelings which I am now experiencing so strongly.

    So, please cry when you need to cry. You aren't going to hurt anyone by doing so. Hey, email me and we can cry together, if you want. Just let it out.

    Oh yeah, and Donna...how are you doing. I haven't heard from you in a while. I really hope you are doing okay, too. Please update on how you are doing. I'd like to hear from you.

    Well, now I feel like I've been lecturing people. I hope that nothing I said in this post has offended anyone, because that is not my intentions. I care a lot about the people on here that I post with and just like to offer my own support and kind words, when and if possible. Well, it's late, I'm tired, and well, I'm going to bed. Work again tomorrow, yeah...I sound thrilled don't I....?

    Well, bye for now.
  • floralam88
    floralam88 Member Posts: 14

    Okay, I just had a crying
    Okay, I just had a crying moment talking with my sister on the phone. We talked for over an hour and a half. I think that's the longest I've ever talked with her. We're 6 years apart in age; I'm 24 years old and well we've always been a little different from each other, mostly because of the age difference, I guess, but I find moments like tonight drawing us closer together as sisters. Anyways, I really got upset tonight, over dad and his comments about how much I had spent over groceries tonight (I know, groceries...it's a stupid thing to get worked up about). I guess, it had just been a rough day already, and after getting off work, and then having to go get groceries, it really got me upset when dad had to argue with me over how much I'd spent. I guess he's just worried, lately. It just doesn't help having to think about those things, on top of experiencing the emotions of grief.

    But anyways, I called my sister to have someone to vent to, and we started talking about mom and how much we missed her, and I told her how I've been contimplating on regrets and bad memories from when mom was sick, which I'm having a hard time with this past week. I seem to keep going back in my mind to mom's last night before passing and it kind of haunts me in a way. I guess it's just really hard right now to picture the good memories, because the loss of mom is so recent. But, talking with my sister really helped me tonight. I guess lately I've been trying to stay so strong and not show too many emotions, that all my feelings have been bottled up inside and it's getting to be too much, so I think I'm going to start talking with my sister more often, because it really helps to talk about these things with someone. You'll might get sick of me here soon, because I think I'm going to be posting a lot here lately, because I think what I'm experiencing right now is a delayed reaction to loosing mom and talking with you all, besides talking with my sister, is slowly helping.

    On another note:
    Dawn, thanks for the post. I really am hoping the best news possible for your fil for Friday's scans. I've got my fingers crossed and I'll be praying. It's good that your husband will be there to go with him. You don't know how much having someone with you when you're going through those kinds of things can seem to help calm one's nerves. When I went with my mom when she had scans, treatments, etc., I like to think it really made her more at ease to know someone she loved was there with her. I really hope your fil gets good news. He's lucky to have such good people as you and your husband there for support. Please let us know how it goes Friday when that day comes around. Got anything planned while your hubby's away, it being summer and all and no school and you being all alone with the kids? Thanks for the emails and updates and I hope we get to hear from Maryann soon.

    Babs, thanks for posting as well. (This gets pretty lengthy, just to warn you, but I feel like I need to say a lot right now to you and hopefully it will be of comfort and help). I know your son has to be feeling really bad right now. I think one thing that helped me was being there and being involved. I may have said this before, I'm not sure, but by being involved it makes you feel like you are needed and like "yes, there is something you can do to help". I think one of the reasons it is so hard is because you're sitting there watching this happen to your loved one and you're feeling helpless; like you can never do enough. Also, I think, talking about it can help. Maybe it might be a little easier for him if he got a chance to just have some father/son time together, where they could talk and he could not be afraid to ask questions about what's going on or about what his fears are. Maybe, even have a chance to have what I call an "almost normal" moment, because whether your the one with the cancer or you're the one watching someone going through it, things become different, there's a lot of changes, besides the fact that you now have this huge weight on you called "worry". Worry of the unknown or of what's going to happen to your loved one, added onto the sudden changes in your normal routines, can just make it all so difficult for one person to take. But like I said, everyone's situation is different and you have to do what's right for you/him. Me and my mom were really close; as close as a mom and daughter can ever be. We used to do everything together. There were things I could sit and talk about with mom that I could never talk about with anyone else. Mom was the personification of love, caring, nuturing, strength, determination, and much more. And I will always miss her. And I got to sit and talk with my mom one day (I remember) about my fears of loosing her and her not being there for those major milestones in my life. I can remember talking about those things with her and crying with her, and maybe it didn't make the situation easier, but I look back and think to myself how I'm thankful to have gotten moments like those to just be there with her. I'm not saying your going to lose anyone or that your son is going to lose his dad, but I'm just saying that having those moments like that can help. Please, reach out to your son and let him know that you understand and that I am here if he needs a person to talk to. Also, Babs I know that you are going through a lot too. When you said in your last post about how hard it is to hold back the tears, I really wished I could just crawl through my computer screen and come give you a hug, as you and others have said to me these past few weeks. Believe it or not, I know what you mean. You feel like by crying in front of him, you will make him upset even more. If there is one piece of advice I can offer, it's this: "just cry". I've held in my tears so many times that now it's all coming out at once in rivers. If you should happen to cry in front of him and he says anything, let him know it's just because you care so much about him. Crying is a normal human emotion and believe it or not it helps to cry. But, I know what you mean, though. I used to hold it to the point I didn't know what to do. So I used to cry in the car, in my pillow at night, on my way to work, at work, on the cell phone, and even while posting with you all on the computer. The thing to remember is, I think, that you can't hold it all in, like you've got this suit of armor on, because it eventually will eat you all up inside.

    You know, that's where I got my username "AlwaysHaveHope" from, because for the first year of mom's cancer, I was filled with so much hope that things would get better, that one day mom and I would get to go shopping together again, or I'd get to see her in the kitchen cooking again; no matter what... I always had hope, even when no one else around me did, and so I refused myself to cry. I can remember kissing my mom goodbye as they wheeled her into surgery on Feb. 1, 2008, no tears or anything, while my dad and sister cried their eyes out. My tears came later and lasted briefly, because I was filled with so much hope things were going to work out; that she'd survive her surgery (which she did), I kind of felt like I had a "suit of armor" on that kept me from being emotional because for some strange reason I felt obligated that I had to be strong for everyone else around me. The only problem with that was that I was really just ignoring the feelings which I am now experiencing so strongly.

    So, please cry when you need to cry. You aren't going to hurt anyone by doing so. Hey, email me and we can cry together, if you want. Just let it out.

    Oh yeah, and Donna...how are you doing. I haven't heard from you in a while. I really hope you are doing okay, too. Please update on how you are doing. I'd like to hear from you.

    Well, now I feel like I've been lecturing people. I hope that nothing I said in this post has offended anyone, because that is not my intentions. I care a lot about the people on here that I post with and just like to offer my own support and kind words, when and if possible. Well, it's late, I'm tired, and well, I'm going to bed. Work again tomorrow, yeah...I sound thrilled don't I....?

    Well, bye for now.

    Kidney cancer
    Hi Alwayshavehope,

    I really admired you for being so strong. My Mom passed away a few months, I felt so lost and empty. A couple of weeks after Mom died, I kept feeling if I have choosen for her the wrong doctor or taking her to the wrong hospital. I don't know why Mom died that sudden just a couple of months feeling pain in her lower back. I don't even know if she really have kidney cancer as what the Dr. speculated. I missed her so much. She was a strong, determine and so caring person. I remembered 3 yrs ago, it was a new yr eve, she said to me my new yr wishes is that hope you can get married soon. I regret of not taking that seriously as I always think My mom was such a strong and healthy. I felt so regret that if one day i got married, she will not be there to have the joys with me. I am so closed with Mom. She is the
    person that i am able to share my personal feeling with. I am just so unable to concerntrate to do anything right now. I always thought that I am a very strong person. I don't know why Mom's passed away impacted me so much. I don't know if I have the strength to think of getting married or have children as I always felt Mom won't be around to share the joys with me which is the things I really wanted her to have.

    Thanks for listening.
  • donna_lee
    donna_lee Member Posts: 1,023 Member

    Kidney cancer
    Hi Alwayshavehope,

    I really admired you for being so strong. My Mom passed away a few months, I felt so lost and empty. A couple of weeks after Mom died, I kept feeling if I have choosen for her the wrong doctor or taking her to the wrong hospital. I don't know why Mom died that sudden just a couple of months feeling pain in her lower back. I don't even know if she really have kidney cancer as what the Dr. speculated. I missed her so much. She was a strong, determine and so caring person. I remembered 3 yrs ago, it was a new yr eve, she said to me my new yr wishes is that hope you can get married soon. I regret of not taking that seriously as I always think My mom was such a strong and healthy. I felt so regret that if one day i got married, she will not be there to have the joys with me. I am so closed with Mom. She is the
    person that i am able to share my personal feeling with. I am just so unable to concerntrate to do anything right now. I always thought that I am a very strong person. I don't know why Mom's passed away impacted me so much. I don't know if I have the strength to think of getting married or have children as I always felt Mom won't be around to share the joys with me which is the things I really wanted her to have.

    Thanks for listening.

    Hello y'all
    As if I'm from the south...not! My bro and sister in law have been in Alabama since 1967, so get to hear the phrases when we visit.

    Had a fun weekend. We shut the business for Friday and gave everyone a 3 day weekend. I mentioned our Friday outing in probably the last post of Part I on this saga. If you go back and read it, there is really something funny that happened. When i wrote about us buying salt-water taffy, I hadn't hyphenated the word and when I hit the "post" button, it told me I had written innapropriate language and put asterisks in. So use your imagination for "Sal er" and see what the computer editor kicked out.

    Saturday we went to the mountains to a BBQ with dear friends and many of their other friends. **** is a retired school administrator who was forced to retire because of PTSD. He was an assistant principal when a student brought guns to school and killed 2 students and wounded others. And that was after killing his parents the night before. If you have the stomach, google Kip Kinkle, the student who did this. Anyway, **** has been a real help to the family the past 3 years. He and I can talk about anything, especially when I went thru a realy depressed stage this past winter.

    Sunday, I worked in the yard and now it's back to work here at the office. I had to write myself notes on the desk blotter so I wouldn't overlook about 4 projects that need to be completed in the next few days.

    Last results on blood work showed WBC were the same (below normal range) and Hgb count was a little bit up but still lower than normal range. I see the oncology nurse for a check up in 2 weeks and I'm planning for a good report then. The only thing that is bugging me now is my ankle---I forgot to tell you I broke it in 3 places and dislocated it in Feb. 07 while we were in Charleston, SC. It healed OK after surgery; but I've been working on a side hill in the yard and that has but a strain on the ligaments, so I get sharp pains when I walk sometimes.

    Carrie, I'm glad you are working thru your grief. It does help to talk. I have a new friend in town who's husband died of cancer last fall. We chat on the phone or in person and I just let her go. After the first time, she called in tears to appologize for taking up my time. But I told her that's what friends do.

    Hope everyone had a good weekend.
    Donna
  • imbkuz
    imbkuz Member Posts: 52
    donna_lee said:

    Hello y'all
    As if I'm from the south...not! My bro and sister in law have been in Alabama since 1967, so get to hear the phrases when we visit.

    Had a fun weekend. We shut the business for Friday and gave everyone a 3 day weekend. I mentioned our Friday outing in probably the last post of Part I on this saga. If you go back and read it, there is really something funny that happened. When i wrote about us buying salt-water taffy, I hadn't hyphenated the word and when I hit the "post" button, it told me I had written innapropriate language and put asterisks in. So use your imagination for "Sal er" and see what the computer editor kicked out.

    Saturday we went to the mountains to a BBQ with dear friends and many of their other friends. **** is a retired school administrator who was forced to retire because of PTSD. He was an assistant principal when a student brought guns to school and killed 2 students and wounded others. And that was after killing his parents the night before. If you have the stomach, google Kip Kinkle, the student who did this. Anyway, **** has been a real help to the family the past 3 years. He and I can talk about anything, especially when I went thru a realy depressed stage this past winter.

    Sunday, I worked in the yard and now it's back to work here at the office. I had to write myself notes on the desk blotter so I wouldn't overlook about 4 projects that need to be completed in the next few days.

    Last results on blood work showed WBC were the same (below normal range) and Hgb count was a little bit up but still lower than normal range. I see the oncology nurse for a check up in 2 weeks and I'm planning for a good report then. The only thing that is bugging me now is my ankle---I forgot to tell you I broke it in 3 places and dislocated it in Feb. 07 while we were in Charleston, SC. It healed OK after surgery; but I've been working on a side hill in the yard and that has but a strain on the ligaments, so I get sharp pains when I walk sometimes.

    Carrie, I'm glad you are working thru your grief. It does help to talk. I have a new friend in town who's husband died of cancer last fall. We chat on the phone or in person and I just let her go. After the first time, she called in tears to appologize for taking up my time. But I told her that's what friends do.

    Hope everyone had a good weekend.
    Donna

    Just a Quick Check In
    Hi Everyone. Carrie didn't want you to ever think that I forgot you. It's been hectic(what else is new?)You're in my heart and prayers always.I will talk more later but just wanted you to know I'm here. Dawn hope all is well with the three little ones and the rest of your family and of course you too. Donna lee hope your ankle is better because this is the summer of Donna lee! Tomorrow is Sloan. Then in two weeks cat scan. Think hubby will be done with first cycle of Sutent and will be off two weeks. Oh how I pray it's working.
    I'm anxiously waiting to see Maryann back here. Hope she's ok.
    Hope life gives me time later to chat.
    Love you all. You've become family!
    Babs
  • imbkuz
    imbkuz Member Posts: 52
    imbkuz said:

    Just a Quick Check In
    Hi Everyone. Carrie didn't want you to ever think that I forgot you. It's been hectic(what else is new?)You're in my heart and prayers always.I will talk more later but just wanted you to know I'm here. Dawn hope all is well with the three little ones and the rest of your family and of course you too. Donna lee hope your ankle is better because this is the summer of Donna lee! Tomorrow is Sloan. Then in two weeks cat scan. Think hubby will be done with first cycle of Sutent and will be off two weeks. Oh how I pray it's working.
    I'm anxiously waiting to see Maryann back here. Hope she's ok.
    Hope life gives me time later to chat.
    Love you all. You've become family!
    Babs

    Another Day
    Hi Everyone
    Another day at hospital. Blood work and check up for husband. Tomorrow last day of first cycle of Sutent. Then two weeks off and CT scan. Talk about scanxieity! Sometimes it's like everything is ok and this really isn't happening and it's all going to go away. Unfortunately this disease doesn't give you a break from all the other problems in life. I'm really trying very hard to look for some good things (even under rocks:) but what's that saying when it rains it pours. So I have to let go and give everything over. Because his white blood count and some other goodies were low/high I have to watch if he should get a temp of 100.4 or higher....then off to urgent care. Have to take him to NYC since we live in the suburbs.But I keep thinking that he'll be ok because that's what he says. I'm so tired so this probably sounds like jiberish...sorry.But did want to touch base.
    Carrie I'm especially concerned for you and it's normal to cry now. I think when this is all happening we go into numb/shock/survival mode or whatever you want to call it. Yes we cry at this time but it's still not totally real and scary. You have every right to feel what you're feeling now and cry, scream whatever. You've been and still going through one of the greatest losses that you'll ever go through in your life. I wish I could put your head on my shoulder so you can cry. I'm so so sorry Carrie.I'm glad you have your sister.
    That was very sweet for you to offer to talk to my son...he's a little older than you but I don't think that he's ready. He goes from denial.....his dad will be ok....to anger.
    I hope some day he will talk to you because he feels nobody (his friends/family)don't understand how he feels. Please just keep me posted Carrie how you are doing. You're always in my heart and I pray for peace for you.
    Dawn, tomorrow the big day for your fil? Have you heard anything from your hubby how things are going? And how are you managing with the three little ones?
    Hope to hear all is well. I'm praying.
    Like I said I'm tired so I'll sign off now but wanted you to know that I'm thinking of you guys and still hoping to see Maryann on here.
    Always
    Babs
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    imbkuz said:

    Another Day
    Hi Everyone
    Another day at hospital. Blood work and check up for husband. Tomorrow last day of first cycle of Sutent. Then two weeks off and CT scan. Talk about scanxieity! Sometimes it's like everything is ok and this really isn't happening and it's all going to go away. Unfortunately this disease doesn't give you a break from all the other problems in life. I'm really trying very hard to look for some good things (even under rocks:) but what's that saying when it rains it pours. So I have to let go and give everything over. Because his white blood count and some other goodies were low/high I have to watch if he should get a temp of 100.4 or higher....then off to urgent care. Have to take him to NYC since we live in the suburbs.But I keep thinking that he'll be ok because that's what he says. I'm so tired so this probably sounds like jiberish...sorry.But did want to touch base.
    Carrie I'm especially concerned for you and it's normal to cry now. I think when this is all happening we go into numb/shock/survival mode or whatever you want to call it. Yes we cry at this time but it's still not totally real and scary. You have every right to feel what you're feeling now and cry, scream whatever. You've been and still going through one of the greatest losses that you'll ever go through in your life. I wish I could put your head on my shoulder so you can cry. I'm so so sorry Carrie.I'm glad you have your sister.
    That was very sweet for you to offer to talk to my son...he's a little older than you but I don't think that he's ready. He goes from denial.....his dad will be ok....to anger.
    I hope some day he will talk to you because he feels nobody (his friends/family)don't understand how he feels. Please just keep me posted Carrie how you are doing. You're always in my heart and I pray for peace for you.
    Dawn, tomorrow the big day for your fil? Have you heard anything from your hubby how things are going? And how are you managing with the three little ones?
    Hope to hear all is well. I'm praying.
    Like I said I'm tired so I'll sign off now but wanted you to know that I'm thinking of you guys and still hoping to see Maryann on here.
    Always
    Babs

    Fantastic News
    Hello Everyone,

    Wow--you ladies have been busy. I thought I would have to post a lot this week, but I just didn't have time. These little kids have been trying to kill me. I don't think I've been to bed before 11 or midnight any night this week, my house is in shambles and I have had to endure the pool with my 3 kids and usually an extra neighborhood kid 3 times this week. I am not really complaining (all though it would be nice to at least have a chance to pee by yourself--those of you with small children, you know what I mean, those without just think I'm crazy--but your time will come!) it was nice to have the distraction of the kids while my husband was up with my fil.

    And now for the fantastic news--my fil had positive results from his scans today. The tumors in his abdomen have shrunken by 75%. The Sudent (sp?) is apparently working, so he will continue with that. He is having more side effects now, but I think he can deal with that now that he knows that his tumors are shrinking down. The one thing the doctor expressed concern about was his platelet count. Anyone else have problems with low platelets while taking Sudent?? Anyway, I am just so pleasently surprised. I was honestly preparing myself for terrible news, but still hoping for the best.

    Carrie, I think what you are going through is normal. You will have to be very gentle with yourself this year. You just lost your mom and its going to take a while for all of you to grieve and adjust to that. Hang in there and keep enjoying the positive things in life (Remember, the new Harry Potter movie is about to come out!).

    Babs, you hang in there too. It sounds like your husband is taking the same drug my fil is taking so maybe he will have good news too. I'm thinking good thoughts for you and your family. Thanks so much for thinking about mine.

    Maryann--are you out there girl? I have sent a couple of emails, but if you don't post soon or respond to my emails, you may have to suffer from another phone call from me!! Just kidding with respect to the phone call. We are all still hoping and praying that you feel better soon. We miss you.

    Donna--thanks for the information about the CURE magazine. Also, you have your road trip coming up with your grandson this next week don't you? Party on girl!! I can't wait to hear all about it.

    Hope I didn't miss anyone. I'll try to pop back in a little later. Have a good weekend ladies.
    Dawn
  • imbkuz
    imbkuz Member Posts: 52

    Fantastic News
    Hello Everyone,

    Wow--you ladies have been busy. I thought I would have to post a lot this week, but I just didn't have time. These little kids have been trying to kill me. I don't think I've been to bed before 11 or midnight any night this week, my house is in shambles and I have had to endure the pool with my 3 kids and usually an extra neighborhood kid 3 times this week. I am not really complaining (all though it would be nice to at least have a chance to pee by yourself--those of you with small children, you know what I mean, those without just think I'm crazy--but your time will come!) it was nice to have the distraction of the kids while my husband was up with my fil.

    And now for the fantastic news--my fil had positive results from his scans today. The tumors in his abdomen have shrunken by 75%. The Sudent (sp?) is apparently working, so he will continue with that. He is having more side effects now, but I think he can deal with that now that he knows that his tumors are shrinking down. The one thing the doctor expressed concern about was his platelet count. Anyone else have problems with low platelets while taking Sudent?? Anyway, I am just so pleasently surprised. I was honestly preparing myself for terrible news, but still hoping for the best.

    Carrie, I think what you are going through is normal. You will have to be very gentle with yourself this year. You just lost your mom and its going to take a while for all of you to grieve and adjust to that. Hang in there and keep enjoying the positive things in life (Remember, the new Harry Potter movie is about to come out!).

    Babs, you hang in there too. It sounds like your husband is taking the same drug my fil is taking so maybe he will have good news too. I'm thinking good thoughts for you and your family. Thanks so much for thinking about mine.

    Maryann--are you out there girl? I have sent a couple of emails, but if you don't post soon or respond to my emails, you may have to suffer from another phone call from me!! Just kidding with respect to the phone call. We are all still hoping and praying that you feel better soon. We miss you.

    Donna--thanks for the information about the CURE magazine. Also, you have your road trip coming up with your grandson this next week don't you? Party on girl!! I can't wait to hear all about it.

    Hope I didn't miss anyone. I'll try to pop back in a little later. Have a good weekend ladies.
    Dawn

    Hi Dawn, I was getting
    Hi Dawn, I was getting worried that the kids tied you up LOL. Yes I remember those days. You know what... they were the best days of my life.
    Woo-hoo that's wonderful news about your fil. When you say platelet counts are off which ones? My hubby had some screwy blood work on Thursday only after first cycle of Sutent. How many rounds has your fil been on? My hubby's CT scan in little less than two weeks. So prayers would be great...really would appreciate it.
    Hopefully, Donna lee is on her roadtrip with her grandson by now and rocking it out. God Bless her.
    And my Maryann, I am praying like a son of a gun for you. Really miss you.
    Carrie, my sweet Carrie...haven't heard from you in awhile so I don't know if that's good or bad. I know sometimes besides my husband life still is happening and I get so overwhelmed and exhausted that I don't write as much as I'd like to. Pray and hope that you're ok. Love to hear from you.

    Gentle Hugs
    Babs
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    imbkuz said:

    Hi Dawn, I was getting
    Hi Dawn, I was getting worried that the kids tied you up LOL. Yes I remember those days. You know what... they were the best days of my life.
    Woo-hoo that's wonderful news about your fil. When you say platelet counts are off which ones? My hubby had some screwy blood work on Thursday only after first cycle of Sutent. How many rounds has your fil been on? My hubby's CT scan in little less than two weeks. So prayers would be great...really would appreciate it.
    Hopefully, Donna lee is on her roadtrip with her grandson by now and rocking it out. God Bless her.
    And my Maryann, I am praying like a son of a gun for you. Really miss you.
    Carrie, my sweet Carrie...haven't heard from you in awhile so I don't know if that's good or bad. I know sometimes besides my husband life still is happening and I get so overwhelmed and exhausted that I don't write as much as I'd like to. Pray and hope that you're ok. Love to hear from you.

    Gentle Hugs
    Babs

    Hello Ladies
    Hello Ladies,

    Well Babs, I'm not sure which platelet counts were off--I thought there was only one platelet count? All I know is that his platelets are a little low so he could bleed more easily. He is now on a 2 week break from the Sutent so the docs are hoping his counts go back up. This is his first round of Sutent and it is a little lower does than most people take, but since the results are so promising, I guess he will just continue with another round at the level he is at. He is having a lot of problems with side effects (sore feet, sore mouth and extreme fatigue) so we are now going to really work hard to manage that.

    Babs, I am absolutely going to pray for good results for your husband's CT scans.

    Maryann, Carrie and Donna I hope all of you are doing well.

    Dawn
  • imbkuz
    imbkuz Member Posts: 52

    Hello Ladies
    Hello Ladies,

    Well Babs, I'm not sure which platelet counts were off--I thought there was only one platelet count? All I know is that his platelets are a little low so he could bleed more easily. He is now on a 2 week break from the Sutent so the docs are hoping his counts go back up. This is his first round of Sutent and it is a little lower does than most people take, but since the results are so promising, I guess he will just continue with another round at the level he is at. He is having a lot of problems with side effects (sore feet, sore mouth and extreme fatigue) so we are now going to really work hard to manage that.

    Babs, I am absolutely going to pray for good results for your husband's CT scans.

    Maryann, Carrie and Donna I hope all of you are doing well.

    Dawn

    Hi There
    Dawn this was my hubby's first round too. Now on 2 week break also. Sore feet-lots of cream especially heavy cream at night and same for hands. Thorlo socks (picked up at Modells..pricey but well worth it. Don't be breaking in any new shoes now. Sore mouth-very soft toothbrush with biotene...my husbands using sensodyne toothpaste. There's also magic mouthwash which I haven't found out actually what it is. Fatigue-did they check his thyroid panel? My husbands fatigue caused by hypothyroidism so they put him on Synthroid or maybe just the Sutent causing it.Hope this helps somewhat.
    Now besides Maryann, I'm getting really concerned about Carrie. Hope she's ok.
    imbkuz
  • AlwaysHaveHope
    AlwaysHaveHope Member Posts: 29
    imbkuz said:

    Hi There
    Dawn this was my hubby's first round too. Now on 2 week break also. Sore feet-lots of cream especially heavy cream at night and same for hands. Thorlo socks (picked up at Modells..pricey but well worth it. Don't be breaking in any new shoes now. Sore mouth-very soft toothbrush with biotene...my husbands using sensodyne toothpaste. There's also magic mouthwash which I haven't found out actually what it is. Fatigue-did they check his thyroid panel? My husbands fatigue caused by hypothyroidism so they put him on Synthroid or maybe just the Sutent causing it.Hope this helps somewhat.
    Now besides Maryann, I'm getting really concerned about Carrie. Hope she's ok.
    imbkuz

    Hi everyone...
    Hey,
    I'm okay. Don't worry....
    Just really didn't have much to say these past few days, but I have been reading all of your posts. Dawn...I am so overjoyed for you and your father-in-law right now. It is so great to hear that someone out there is finally getting some positive results. I am so happy for him. I know about the sore mouth and feet and fatigue. Mom experienced all that when she took Sutent. Like Babs, the only thing you can really do about the sore feet is put lotion/cream on them everyday. When mom experienced the feet soreness and extreme calluses, she was constantly applying cream to her feet. Shoes were a problem, too. I can remember that her feet had gotten so sore at one point that she couldn't wear shoes. I think she was able to wear flip flops and sometimes slippers, when she went through that. But, if the Sutent is doing good for your fil, maybe it's worth it, like you said. I am just so glad the Sutent is working for him. Platlets...well, mom experienced that, too. She went in two or three times to the hospital and had to get platlets through i.v. I can remember one time when she had to do it through outpatient. I sat with her in this room, for a few hours and it made her so cold, she shivered (i think because they keep the stuff cold stored), but other than going through that, it's nothing to be too worried about, because I can remember after mom got it, a day or two later she'd be feeling a lot better. When mom had moments where she felt really bad or extremely tired...I always knew it meant that either she was really dehydrated or her platlet count was low. But, anyways, if your fil is extremely tired be aware of those things and also, don't get extremely worried, because Sutent and Nexavar both are two of the treatments out there, that mom had tried, that can cause fatigue.

    Well, here on the home front, we had a picnic at work Friday...really boring....it was this thing we did to try to boost people's morall at work. I just think it was boring, though. Saturday, I sat at home and my sister came over and we put over 80 wedding favors together. We also went to the tailor down the street and left my bridesmaid dress to be hemmed. Sunday,....I washed clothes, wow!!! At least, I've got my movie Wednesday to look forward to. Oh, and I've started a painting. I don't think I've mentioned it before, but I'm an artist (on the side, when I'm in the mood). I haven't done any of my art in a long time and well, mom's worries about how I hadn't done artwork in a long time, has kind of motivated me to get back to doing some artwork again. We'll see how it goes. Oh, and I'm still working on those picture frames. Got one of them done, now I'm working on another one.

    Well, Maryann...I'm still thinking about you and hope you are getting to feeling better. Hope we all will get to hear from you soon.

    Donna and Babs....I'm thinking about you, too. Hope all is going well. Talk with you all again soon. Have a good night.

    AlwaysHaveHope 0:)
  • imbkuz
    imbkuz Member Posts: 52

    Hi everyone...
    Hey,
    I'm okay. Don't worry....
    Just really didn't have much to say these past few days, but I have been reading all of your posts. Dawn...I am so overjoyed for you and your father-in-law right now. It is so great to hear that someone out there is finally getting some positive results. I am so happy for him. I know about the sore mouth and feet and fatigue. Mom experienced all that when she took Sutent. Like Babs, the only thing you can really do about the sore feet is put lotion/cream on them everyday. When mom experienced the feet soreness and extreme calluses, she was constantly applying cream to her feet. Shoes were a problem, too. I can remember that her feet had gotten so sore at one point that she couldn't wear shoes. I think she was able to wear flip flops and sometimes slippers, when she went through that. But, if the Sutent is doing good for your fil, maybe it's worth it, like you said. I am just so glad the Sutent is working for him. Platlets...well, mom experienced that, too. She went in two or three times to the hospital and had to get platlets through i.v. I can remember one time when she had to do it through outpatient. I sat with her in this room, for a few hours and it made her so cold, she shivered (i think because they keep the stuff cold stored), but other than going through that, it's nothing to be too worried about, because I can remember after mom got it, a day or two later she'd be feeling a lot better. When mom had moments where she felt really bad or extremely tired...I always knew it meant that either she was really dehydrated or her platlet count was low. But, anyways, if your fil is extremely tired be aware of those things and also, don't get extremely worried, because Sutent and Nexavar both are two of the treatments out there, that mom had tried, that can cause fatigue.

    Well, here on the home front, we had a picnic at work Friday...really boring....it was this thing we did to try to boost people's morall at work. I just think it was boring, though. Saturday, I sat at home and my sister came over and we put over 80 wedding favors together. We also went to the tailor down the street and left my bridesmaid dress to be hemmed. Sunday,....I washed clothes, wow!!! At least, I've got my movie Wednesday to look forward to. Oh, and I've started a painting. I don't think I've mentioned it before, but I'm an artist (on the side, when I'm in the mood). I haven't done any of my art in a long time and well, mom's worries about how I hadn't done artwork in a long time, has kind of motivated me to get back to doing some artwork again. We'll see how it goes. Oh, and I'm still working on those picture frames. Got one of them done, now I'm working on another one.

    Well, Maryann...I'm still thinking about you and hope you are getting to feeling better. Hope we all will get to hear from you soon.

    Donna and Babs....I'm thinking about you, too. Hope all is going well. Talk with you all again soon. Have a good night.

    AlwaysHaveHope 0:)

    Hi Carrie
    In your post before this one you said I could email you but I don't know how. Would love to talk to you. I'm glad to hear that you are still able to go about with your life.I can't imagine it not being difficult at times. Do you sometimes feel like you're there but not there? Does that make sense? Wow, you paint! I used to paint before my accident. I used to find it very therapeutic when I was going through difficult times. I just got so caught up in it that I would forget everything.I'd stay up all night when I could't sleep. I did try to do it now but to no avail. So what do you paint? When's your sisters wedding? It must be bittersweet. Exciting time but yet mom not there. But I know she will be there in spirit and watching over with her angels surrounding her family.If I can't email you can you just check in so I know that you're ok even if you have nothing to say. I just am really concerned about you. If you can't I understand. You don't need anymore pressure. Just know that you're in my heart and prayers.
    My hubby off first cycle of Sutent now and scan in less than two weeks so scanaxiety setting in besides life throwing me other curves. Just can't seem to get up and dust off.
    I'm so overwhelmed with life. I thought God gives us what we can handle?
    Always
    Babs
  • AlwaysHaveHope
    AlwaysHaveHope Member Posts: 29
    imbkuz said:

    Hi Carrie
    In your post before this one you said I could email you but I don't know how. Would love to talk to you. I'm glad to hear that you are still able to go about with your life.I can't imagine it not being difficult at times. Do you sometimes feel like you're there but not there? Does that make sense? Wow, you paint! I used to paint before my accident. I used to find it very therapeutic when I was going through difficult times. I just got so caught up in it that I would forget everything.I'd stay up all night when I could't sleep. I did try to do it now but to no avail. So what do you paint? When's your sisters wedding? It must be bittersweet. Exciting time but yet mom not there. But I know she will be there in spirit and watching over with her angels surrounding her family.If I can't email you can you just check in so I know that you're ok even if you have nothing to say. I just am really concerned about you. If you can't I understand. You don't need anymore pressure. Just know that you're in my heart and prayers.
    My hubby off first cycle of Sutent now and scan in less than two weeks so scanaxiety setting in besides life throwing me other curves. Just can't seem to get up and dust off.
    I'm so overwhelmed with life. I thought God gives us what we can handle?
    Always
    Babs

    Would love to be able to
    Would love to be able to email with you. I know Dawn and Maryann's emails, but not yours. The only problem is, is I don't really want to post my email address on this very worldwide public posting for anyone and everyone to see (my email has my whole name in it). If you don't mind putting your email address in a posting though, I'll email you right back and then you'll have my email address. Hope you don't think this is weird, it's just I don't like taking the risk. If not, I also understand.

    I can bet you are filled with lots of nervousness and anxiety right now and rightfully so. You sit on the edge of your seat wondering and hoping that scan results are going to be as good as you hope. Yeh, that "God only gives us what we can handle" thing, I really wonder about that. I have lots of questions lately about why he would give us such challenges in the way he's been dishing them out lately. I hope those curves you've been getting lately, aren't bad or too hard to deal with. Feel free to talk about it with me or the rest of us if need be; remember your husband's not the only one going through a difficult time right now. I believe it's just as hard on family as it is for the actual person with the cancer.

    I know what you mean about feeling like you're here, but not really here. I feel a lot lately this feeling like I'm just living a really bad nightmare that I haven't waken from yet. Or like mom's just at the hospital or something, and she's going to come back soon. It's like it's not real; hard to really realize the devastation; hard to look back at all the memories of what we've actually been through the past year and a half; that all that really happened. Then reality sets back in; you get those moments when you used to do something with mom that you're now trying to do alone. Like the movies tomorrow....I keep thinking about how the last time I went there it was with mom, we shared a huge bucket of popcorn and put two straws in a large cup of soda and shared it, while we watched "Ink Heart". Mom always went with me to see a movie. It was one of our together things we did and it's going to be hard to go tomorrow alone (dad can't go with me). I think I try to create things to do here lately, too, to help keep my mind off things,ie...doing a painting, puzzle, pictures, and so on. Does any of this make sense. I don't know...?

    But anyways, I am hoping your hubby's scans turn out with positive results. I'm so happy for Dawn's fil and his good news....I hope his good results can rub off in your hubby's direction. Well, let me know about the email thing. I'll talk with you and everyone else later (let you know how my movie goes).

    AlwaysHaveHope 0:)
  • imbkuz
    imbkuz Member Posts: 52

    Would love to be able to
    Would love to be able to email with you. I know Dawn and Maryann's emails, but not yours. The only problem is, is I don't really want to post my email address on this very worldwide public posting for anyone and everyone to see (my email has my whole name in it). If you don't mind putting your email address in a posting though, I'll email you right back and then you'll have my email address. Hope you don't think this is weird, it's just I don't like taking the risk. If not, I also understand.

    I can bet you are filled with lots of nervousness and anxiety right now and rightfully so. You sit on the edge of your seat wondering and hoping that scan results are going to be as good as you hope. Yeh, that "God only gives us what we can handle" thing, I really wonder about that. I have lots of questions lately about why he would give us such challenges in the way he's been dishing them out lately. I hope those curves you've been getting lately, aren't bad or too hard to deal with. Feel free to talk about it with me or the rest of us if need be; remember your husband's not the only one going through a difficult time right now. I believe it's just as hard on family as it is for the actual person with the cancer.

    I know what you mean about feeling like you're here, but not really here. I feel a lot lately this feeling like I'm just living a really bad nightmare that I haven't waken from yet. Or like mom's just at the hospital or something, and she's going to come back soon. It's like it's not real; hard to really realize the devastation; hard to look back at all the memories of what we've actually been through the past year and a half; that all that really happened. Then reality sets back in; you get those moments when you used to do something with mom that you're now trying to do alone. Like the movies tomorrow....I keep thinking about how the last time I went there it was with mom, we shared a huge bucket of popcorn and put two straws in a large cup of soda and shared it, while we watched "Ink Heart". Mom always went with me to see a movie. It was one of our together things we did and it's going to be hard to go tomorrow alone (dad can't go with me). I think I try to create things to do here lately, too, to help keep my mind off things,ie...doing a painting, puzzle, pictures, and so on. Does any of this make sense. I don't know...?

    But anyways, I am hoping your hubby's scans turn out with positive results. I'm so happy for Dawn's fil and his good news....I hope his good results can rub off in your hubby's direction. Well, let me know about the email thing. I'll talk with you and everyone else later (let you know how my movie goes).

    AlwaysHaveHope 0:)

    Carrie
    Actually Dawn has mine and I think I have hers somewhere in my emails. I got hers to email Maryann but I never heard from her I really hope that she is ok. I absolutely respect the fact that you don't want to put your email on here. Do you see me putting mine on? I have enough problems.So I'm def going to be scrolling down to find her email and I hope you do the same. That would be great to talk without reservations for both.
    Actually my other concerns are consuming me more than my husband if you can believe that one. So I'm really upset but yet trying to stay calm. I read on another site that a caregiver died unexpectedly while the person with RCC is still alive. Very sad. But I wonder how much I can take.
    Anyways I think that it's healthy that your keeping yourself busy...painting, puzzles. pictures,etc. I wish I had the strength and time. My life consists of just looking for doctors, pharmacy, and going to doctors. The doctor and hospital that my husband is going to are great. So at least I feel comfortable with that.I too pray that his tumors are shrinking because I can't imagine going on without him in this mess called life. I don't mean to sound morbid. Sorry. Just very overwhelmed.
    God Bless you for getting back on the saddle(old expression) and going to the movies again. I wish I was there for you. I know no one will ever replace your mom but I hope God sends people your way to be there for you to share the good and bad things in life.
    If you could just say a little pray for my hubby, son and me that would be awesome. If not I understand with all the emotions and feelings that you're going through. I can't imagine going someplace or not seeing my husband sitting at the kitchen stool so Carrie I cry for you. It's got to be more than hard. There are no words. I'm just so sorry.
    Hope to talk really soon.
    Blessings
    Babs
  • sallyvel
    sallyvel Member Posts: 7
    imbkuz said:

    Carrie
    Actually Dawn has mine and I think I have hers somewhere in my emails. I got hers to email Maryann but I never heard from her I really hope that she is ok. I absolutely respect the fact that you don't want to put your email on here. Do you see me putting mine on? I have enough problems.So I'm def going to be scrolling down to find her email and I hope you do the same. That would be great to talk without reservations for both.
    Actually my other concerns are consuming me more than my husband if you can believe that one. So I'm really upset but yet trying to stay calm. I read on another site that a caregiver died unexpectedly while the person with RCC is still alive. Very sad. But I wonder how much I can take.
    Anyways I think that it's healthy that your keeping yourself busy...painting, puzzles. pictures,etc. I wish I had the strength and time. My life consists of just looking for doctors, pharmacy, and going to doctors. The doctor and hospital that my husband is going to are great. So at least I feel comfortable with that.I too pray that his tumors are shrinking because I can't imagine going on without him in this mess called life. I don't mean to sound morbid. Sorry. Just very overwhelmed.
    God Bless you for getting back on the saddle(old expression) and going to the movies again. I wish I was there for you. I know no one will ever replace your mom but I hope God sends people your way to be there for you to share the good and bad things in life.
    If you could just say a little pray for my hubby, son and me that would be awesome. If not I understand with all the emotions and feelings that you're going through. I can't imagine going someplace or not seeing my husband sitting at the kitchen stool so Carrie I cry for you. It's got to be more than hard. There are no words. I'm just so sorry.
    Hope to talk really soon.
    Blessings
    Babs

    Hi, I have been following
    Hi, I have been following your discussion for about a month now since I found this site. My husband found out that he had kidney cancer June 15 this year after a CT scan for an unrelated and minor problem. Needless to say it was a shock to both of us. So far we think that it is stage 2 with a 6.3 cm tumour on the right kidney as of June 10th. We have had problems in Ontario Canada getting a specialist that will remove either the entire kidney or part of it. We have seen two specialists- the first doesn't do larparoscopic (or maybe any surgery) and the second recommended a partial nephrectomy done laparoscopically but told us he didn't have any free OR time before he left the province August 14th. We wonder why we were sent to either of these and with all the vacation time have had problems finding a doctor to do the surgery and are seriously considering having the old fashioned painful open surgery to remove either part or all of the kidney. Anything to get it out without releasing cancer cells into the body. It is a scary time for us even though we think we have caught it relatively early. I won't breathe a sign of relief until I see the pathology report after surgery.
    Anyway, reading the posts makes me feel I am not alone. You are all so courageous. I know we have a hard struggle before us and I am ready to fight for whatever we feel we need medically.
    If either of you want to use my email as a go between to connect with each other I would be happy to post my bogus email so you can both email me and I can foward the emails on to you so you have each others emails. I know you don't know me so that is fine if you don't want to. I set up a "fake" email account for such purposes a long time ago and it is very handy for such useages.
    Take care and I wish you both well. I will keep following you posts to see you are making out. I sincerely wish that your husband does well IMBKUZ, and that you are able to get on with you life and keep you mom in you memories alwayshavehope.
    sallyvel

    Let me know if you want me to post my email for you to connect.
  • Rob FWNJ
    Rob FWNJ Member Posts: 20
    sallyvel said:

    Hi, I have been following
    Hi, I have been following your discussion for about a month now since I found this site. My husband found out that he had kidney cancer June 15 this year after a CT scan for an unrelated and minor problem. Needless to say it was a shock to both of us. So far we think that it is stage 2 with a 6.3 cm tumour on the right kidney as of June 10th. We have had problems in Ontario Canada getting a specialist that will remove either the entire kidney or part of it. We have seen two specialists- the first doesn't do larparoscopic (or maybe any surgery) and the second recommended a partial nephrectomy done laparoscopically but told us he didn't have any free OR time before he left the province August 14th. We wonder why we were sent to either of these and with all the vacation time have had problems finding a doctor to do the surgery and are seriously considering having the old fashioned painful open surgery to remove either part or all of the kidney. Anything to get it out without releasing cancer cells into the body. It is a scary time for us even though we think we have caught it relatively early. I won't breathe a sign of relief until I see the pathology report after surgery.
    Anyway, reading the posts makes me feel I am not alone. You are all so courageous. I know we have a hard struggle before us and I am ready to fight for whatever we feel we need medically.
    If either of you want to use my email as a go between to connect with each other I would be happy to post my bogus email so you can both email me and I can foward the emails on to you so you have each others emails. I know you don't know me so that is fine if you don't want to. I set up a "fake" email account for such purposes a long time ago and it is very handy for such useages.
    Take care and I wish you both well. I will keep following you posts to see you are making out. I sincerely wish that your husband does well IMBKUZ, and that you are able to get on with you life and keep you mom in you memories alwayshavehope.
    sallyvel

    Let me know if you want me to post my email for you to connect.

    Robotic/laparoscopic Nephrectomy
    Hi Sallyvel,
    Before I had my open radical nephrectomy I went and saw several specialists including one that did Robotic and Laparoscopic nephrectomys. What I was told is that they are generally limited to tumors less than a certain size. Since mine was nearly 17 cm I was limited to an open nephrectomy. It has been a little more than a year and it has healed nicely. I’m sure laparoscopic surgery is preferable to the open method but done correctly it certainly is tolerable. I wish your husband well and would be happy to share any of my experience.

    Sincerely,

    Rob
  • AlwaysHaveHope
    AlwaysHaveHope Member Posts: 29
    Rob FWNJ said:

    Robotic/laparoscopic Nephrectomy
    Hi Sallyvel,
    Before I had my open radical nephrectomy I went and saw several specialists including one that did Robotic and Laparoscopic nephrectomys. What I was told is that they are generally limited to tumors less than a certain size. Since mine was nearly 17 cm I was limited to an open nephrectomy. It has been a little more than a year and it has healed nicely. I’m sure laparoscopic surgery is preferable to the open method but done correctly it certainly is tolerable. I wish your husband well and would be happy to share any of my experience.

    Sincerely,

    Rob

    Hey everyone,How's everyone
    Hey everyone,
    How's everyone doing? Good I hope.

    Sallyvel, I am so sorry that your hubby's been recently diagnosed. Those doctor's don't really sound too great. Waiting until August, I think would be the wrong decision. Do you think maybe you'll could try a doctor out here in the States. Just a thought. You opened my eyes, because I didn't even know that they could do laparoscopic surgery for this kind of thing. I always assumed that open surgery was what they did, I guess because that's what mom had to have (she had a huge upside down Y incision left on her after surgery, but her case was very radical; she was already Stage 4 when they caught it and her cancer had caused other things that they had to take care of at the same time, so her case was different). That's the thing you have to be aware of though....that everyone's case is different and procedures, treatments, etc. all depend on the person's individual circumstances. It is so odd, because it seems like talking with others on here, with you, and in mom's own case....people seem to get diagnosed while trying to fix or diagnose some other problem they're having. This is just a suggestion, but I'd work hard to find someone out there who cares enough to take a look at your hubby's case now, not later...do not let some doctor postpone a surgery because it's an inconvience for the doctor's vacation schedule. Please try to find a doctor that can help you and your hubby now. Please stay in contact with me and the others and let us know what you find out. I am concerned.

    Well everyone (on a brighter side),
    I went to my movie today. I surprisingly had a great time. I was alone, but it was nice getting out and doing something. The movie was long, but well worth it. I thought I might have issues being there and maybe it being too much to handle the memories of having been there with mom so many times, but once I got past the consession counter and got into my seat inside the theater, I was okay. I sat there and imagined mom sitting next to me and actually found the memories that were coming to me to be comforting in a way. So, I was able to see the movie and enjoy it. You'll should've seen me though...I bought a large tub of popcorn and dumped a bag of m&m's in it and sat it in the empty seat next to me, while I ate my hotdog....I ended up knocking half the tub of popcorn (m&m's and all) into the floor five minutes later before I caught it and that was before the movie even started. It was kind of funny getting down on the floor and sweeping it into a pile on the floor. I said a few words to myself and then I just had to laugh at myself.

    Well, let me go smush this bug on my computer screen, and go to bed. It is late. I'll be talking with you all soon. Dawn, Maryann, Babs... I'll be emailing you soon (Babs...I'll ask Dawn to give me your email, okay). I'd like to keep up with you all. Night...
  • sallyvel
    sallyvel Member Posts: 7

    Hey everyone,How's everyone
    Hey everyone,
    How's everyone doing? Good I hope.

    Sallyvel, I am so sorry that your hubby's been recently diagnosed. Those doctor's don't really sound too great. Waiting until August, I think would be the wrong decision. Do you think maybe you'll could try a doctor out here in the States. Just a thought. You opened my eyes, because I didn't even know that they could do laparoscopic surgery for this kind of thing. I always assumed that open surgery was what they did, I guess because that's what mom had to have (she had a huge upside down Y incision left on her after surgery, but her case was very radical; she was already Stage 4 when they caught it and her cancer had caused other things that they had to take care of at the same time, so her case was different). That's the thing you have to be aware of though....that everyone's case is different and procedures, treatments, etc. all depend on the person's individual circumstances. It is so odd, because it seems like talking with others on here, with you, and in mom's own case....people seem to get diagnosed while trying to fix or diagnose some other problem they're having. This is just a suggestion, but I'd work hard to find someone out there who cares enough to take a look at your hubby's case now, not later...do not let some doctor postpone a surgery because it's an inconvience for the doctor's vacation schedule. Please try to find a doctor that can help you and your hubby now. Please stay in contact with me and the others and let us know what you find out. I am concerned.

    Well everyone (on a brighter side),
    I went to my movie today. I surprisingly had a great time. I was alone, but it was nice getting out and doing something. The movie was long, but well worth it. I thought I might have issues being there and maybe it being too much to handle the memories of having been there with mom so many times, but once I got past the consession counter and got into my seat inside the theater, I was okay. I sat there and imagined mom sitting next to me and actually found the memories that were coming to me to be comforting in a way. So, I was able to see the movie and enjoy it. You'll should've seen me though...I bought a large tub of popcorn and dumped a bag of m&m's in it and sat it in the empty seat next to me, while I ate my hotdog....I ended up knocking half the tub of popcorn (m&m's and all) into the floor five minutes later before I caught it and that was before the movie even started. It was kind of funny getting down on the floor and sweeping it into a pile on the floor. I said a few words to myself and then I just had to laugh at myself.

    Well, let me go smush this bug on my computer screen, and go to bed. It is late. I'll be talking with you all soon. Dawn, Maryann, Babs... I'll be emailing you soon (Babs...I'll ask Dawn to give me your email, okay). I'd like to keep up with you all. Night...

    Hi "alwayshavehope" I have
    Hi "alwayshavehope" I have learned a lot about this disease in the last few weeks. More than I ever wanted to know! Laparoscopic nephrectomies have been around for a few years, but it seems that they are only used about 20% of the time. This is due to several reasons and often comes down to the individual surgeons preference. It is fairly recent that tumours between 4 & 7cm were done this way which makes us a bit nervous. I am not sure how much data they have to support the fact that there is no more likelyhood of recurrance than using the total nephrectomy.
    Anyway we finally have an appointment with one of the leading surgeons in the Hamilton, ON cancer centre on Monday afternoon, so that is a great relief to us. I am hoping for some good advice but not expecting an early surgery date. I am told there are 30 patients waiting for nephrectomies and they are booking into October. Too stressful to wait that long!!!
    My brother is a doctor (GP) in Toronto and says that if we decide to go with an open nephrectomy he can arrange one in a couple of weeks and we may be forced to go that way. He is the one that helped us get the referral into Hamilton and we did have an appointment very quickly which we are very thankful for. We have already wasted over 1 month being shuffled around and want some resolution.
    I hope that everyone is keeping as well as they can. This is a very good thread and gives one some hope. Take care,
    sallyvel
  • imbkuz
    imbkuz Member Posts: 52
    sallyvel said:

    Hi, I have been following
    Hi, I have been following your discussion for about a month now since I found this site. My husband found out that he had kidney cancer June 15 this year after a CT scan for an unrelated and minor problem. Needless to say it was a shock to both of us. So far we think that it is stage 2 with a 6.3 cm tumour on the right kidney as of June 10th. We have had problems in Ontario Canada getting a specialist that will remove either the entire kidney or part of it. We have seen two specialists- the first doesn't do larparoscopic (or maybe any surgery) and the second recommended a partial nephrectomy done laparoscopically but told us he didn't have any free OR time before he left the province August 14th. We wonder why we were sent to either of these and with all the vacation time have had problems finding a doctor to do the surgery and are seriously considering having the old fashioned painful open surgery to remove either part or all of the kidney. Anything to get it out without releasing cancer cells into the body. It is a scary time for us even though we think we have caught it relatively early. I won't breathe a sign of relief until I see the pathology report after surgery.
    Anyway, reading the posts makes me feel I am not alone. You are all so courageous. I know we have a hard struggle before us and I am ready to fight for whatever we feel we need medically.
    If either of you want to use my email as a go between to connect with each other I would be happy to post my bogus email so you can both email me and I can foward the emails on to you so you have each others emails. I know you don't know me so that is fine if you don't want to. I set up a "fake" email account for such purposes a long time ago and it is very handy for such useages.
    Take care and I wish you both well. I will keep following you posts to see you are making out. I sincerely wish that your husband does well IMBKUZ, and that you are able to get on with you life and keep you mom in you memories alwayshavehope.
    sallyvel

    Let me know if you want me to post my email for you to connect.

    Thanks sallyvel. That's very
    Thanks sallyvel. That's very sweet of you.But we got the emails already. Sorry about your situation and I'll be praying for you and your husband. Hope pathology report comes back with good results and you caught it early.
    God Bless
    imbkuz