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

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

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

dawnmomofthree
Posts: 39
Joined: Mar 2009

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
Posts: 52
Joined: Apr 2009

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
Posts: 29
Joined: Jan 2009

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
Posts: 14
Joined: Jun 2009

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's picture
donna_lee
Posts: 388
Joined: Feb 2009

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. Dick 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, Dick 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
Posts: 52
Joined: Apr 2009

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
Posts: 52
Joined: Apr 2009

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
Posts: 39
Joined: Mar 2009

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
Posts: 52
Joined: Apr 2009

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
Posts: 39
Joined: Mar 2009

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
Posts: 52
Joined: Apr 2009

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
Posts: 29
Joined: Jan 2009

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
Posts: 52
Joined: Apr 2009

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
Posts: 29
Joined: Jan 2009

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
Posts: 52
Joined: Apr 2009

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
Posts: 7
Joined: Jul 2009

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.

imbkuz
Posts: 52
Joined: Apr 2009

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

Rob FWNJ
Posts: 20
Joined: Dec 2008

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
Posts: 29
Joined: Jan 2009

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
Posts: 7
Joined: Jul 2009

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

Loretta58
Posts: 6
Joined: Jul 2009

Please, please, please do not delay in getting treatment, or finding a doctor to perform the surgery!!!!

By the time my Mom found her tumor (yes, she found it herself) it was the size of an orange and had already spread to her lungs, liver, and base of her spine. By the time the biopsy was scheduled the tumor on the base of her spine had grown and compressed her spinal cord requiring surgery which delayed the cancer treatment. I was told she probably should have seen a urologist first. By the time she saw a uroligist the tumor on her kidney was too large to be surgically removed. By the time she healed enough from back surgery to start chemo the kidney tumor had grown so large that it ruptured her bowel and kidney and killed her. All of this took just over 2 months!

Her cancer was extremely agressive. Please act aggressively with your husband's treatment. We found out too late what we were dealing with.

I will pray for you, and hope all goes well.

abestbarbara's picture
abestbarbara
Posts: 18
Joined: Aug 2005

I started sutent in Jan. Can you tell me about side effects? The diarrhea is almost unbearable.

bangormom
Posts: 59
Joined: Dec 2008

Hi everyone,

I hope I'm in the right spot. As a few of you know I was in the hospital for 10 days.

I am sorry for not being able to keep up with you all, when I feel better and there are no nurses or kids around I want to get caught up. I am off of affinitor it's done it's damage and was not working for me, all my tumors grew, and now they took over my left lung, so I am on I'm oxagine, sorry for the spelling, and alot of respitory meds. The physical therapist will be here soon. They are trying to talk me into hospice, I have to make that decision I don't feel ready for that yet.

I want you all to know esp carrie, dawn that I miss you all, you all have made me feel of value these past few months. I also want to thank you for the cards and letters that you have sent to me they mean so much to me.

I'm a little frightend at this time of my life, I am still sick, trying to stay out of the hospital. Now there's this heart thing going on that they don't know what to do about it, the one med will crash my bp, but my heart rate is way to high even at rest, the bp is too low so that is why I can't take that med.

I will write more on another day I'm pretty tired, and the pt is supposed to be coming soon He's here.

Maryann

imbkuz
Posts: 52
Joined: Apr 2009

I am crying because I'm so happy to see your post. Hope you remember me because boy have I missed you and was really concerned where you were. You were the first person to guide me to sites and always said the right thing. Kidney cancer forum not the same without you. Maryann please know that you're in my prayers and what a wonderful person you are.You have certainly won over my heart. You have two wonderful friends Dawn and Carrie and I hope you consider me one too. God Bless them how they were so worried about you. You had us all going.
Don't want to tire you out so I'll make this short.
Always and Forever
Babs

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Maryann,
Thank you. Thank you for always being here to listen to my rambling, for being such a great source of support and understanding, for giving so many helpful words of kindness these past five months when I needed it the most. You will never quite know just how much that has meant to me. I am truely sad that you have to be taking this "journey". I do not wish it upon anyone. I know you and your kids are going through a lot right now. About the hospice thing...you and only you can make that decision and you will know when the right time comes to make it. Please know that your words will always stick with me and continue to help me in my life to come. I wish I could be there right now to hold your hand and be able to talk with you, while you are going through this hard, scary time, but all I can do right now is pray for you, keep on posting, and sending you my own words of encouragement and support through our continued emails (and some how this doesn't feel like enough).

So, Maryann...if there is one thing I would like to say to you before all else...it would be "Thank you from the bottom of my heart" and please know that you have friends from all over the nation that care so much about you and who are thinking about you at this very moment.
You are truely a close friend to me and I hope that I will get to talk with you soon.
Carrie

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

I am so happy to see your post. I am at the same time very sad that your news isn't better. It seems so unfair that nothing seems to work for you! I wish I could help you more. I am sorry to have been such a pest with my phone calls, emails and letters but we just all miss you so much. I don't think you have any idea how much you mean to so many of us.

Please take care of yourself and rest as much as you can. We are always here for you and constantly praying that your situation will improve.

Your friend,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi everyone,

Thank you so much for all your kind words and prayers. Dawn, your phone calls are a blessing, we did not reconize your cell #, thats why we didn't answer,(bill collectors wont stop calling) you are not a pest, I love hearing from you all in any form.

What I need is all the prayers you all can give, miricals still happen, tho I'm losing some of my faith. It's hard to hang on to when things just keep going down hill. I try to stay possitive but it does get hard. One thing that is getting on my nerves is everyone telling to eat, I'm down to 89lbs I know I need to eat, and I try. When I'm real sick I tend not to eat I'm sure you all know what thats like. I'm doing the milk shakes made with boost lots of cals there! Small meals, candy, whatever I feel like eating, but I think I'll go off the deep end if I hear "you have to force yourself." I hear that so many times it makes me want pull whats left of my hair out by the roots! I know they all mean well but one has been droping off diners just for me 3x's a day, last night I ate a small serving of mac n cheeze, she insisted I eat the burger and fries while she was here, I had to keep reminding her that I had eaten what I was able to and all I wanted to do was go to sleep, I didn't want to hurt her feelings but if I can't eat then I can't.
It makes me feel like a meanie, but she shudn't waste her money on food I am not able to eat, so I let the kids split it. I just hope she doesn't find out, she'll be angery with me. Oh well that's enough about the eating thing.

Notice I haven't mentioned hospice yet? Well here we go, the hospice nurse comes on monday to talk about the benifits that it offers. I have heard that I will know when it's time, and I am hoping that is true. I feel pretty good right now, it's the when the next bomb will go off that really bothers me. I just know right now I don't want to die, I'm just not ready yet. My oldest daughter has so much on her plate emotionaly that I can't go right now, it turns out my exhusband is in the same room at the hospital I was, it turns out that his luekemia is back at stage 4, so being 22 with 2 parents with a terminal illness, I don't know how she even gets out of bed in the morning. So see, I have 'stuff' to do.

Well time to force feed myself again. I really just want you all to know that I am greatful to all of you keep praying please.

Maryann

ddt
Posts: 10
Joined: Apr 2009

My husband was diagnosed with Stage IV PRCC December 2008. It was found in his lymph nodes. His cancer is now in his abdomen and he now has the ascites (fluid) in his abdoman that they are draining weekly. He was taking Torisel but it didn't work so we have applied to take Nexavar. I was sorry to hear that Maryann wasn't getting any results with the Afinitor. We are in our late 50s. There was a gentleman in his 70s getting Torisel when my husband was. His cancer had spread to his abdomen as well and the Torisel has been working for him now for a year and a half. So fortunately these drugs are working for some. My husband has been very ill the past three days but prior to that was fine other than a cough and some stomach discomfort. This is so scary! His doctor told us he wouldn't have but a few months unless we could find a drug to work. Maryann, I just lost my best friend to breast cancer a couple of months ago. She was ten years younger than me and had had it for 15+ years. Her daughters are 22 and 25 (in that range). I know she was so worried about them like you are. They called her a million times a day and always seemed sooo needy. Low and behold, they are holding up really well. I know they can't even imagine their loss yet but if it can be of any comfort to you, no one, least of all my friend, would have ever thought they would pull it together the way they have. I am praying for you. You are so brave.
Darla

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hey Maryann,

It is great to see you posting two days in a row. What a treat for us. I do wish things were easier for you. We are all praying for you and we don't want to lose you either.

I can't believe how much cancer there is in your family. Your poor daughter. Didn't you lose both of your parents to cancer too? As for the eating thing, just do the best that you can. I am sure it feels like people are trying to force feed you half the time, but I know they are all just worried about you and some may feel like that is the one thing they can do to help. That is why I sent you the cookies--I thought of sending you flowers but your tiny 89 pound body needed the cookies more. ;) I also realized that if you couldn't eat them, well you had a couple of teenagers in the house that might enjoy them. I'm sure your kids are happy to polish off all the food you can't eat. So just do your best to put on weight and be glad that at least you can have whatever you want. If I could, I would happily transfer 20 pounds from my butt to yours. ;0

I can't give you any advice on the hospice thing. I agree with Carrie, you'll know when the time is right. As far as I am concerned, I hope the time is never right. As your friend, I selfishly don't ever want to lose you. I also don't want you to suffer needlessly and if hospice can offer services that can make it easier on you and your family, then I would want that for you too. I'm sure you will have a better sense of things on Monday after you speak with the hospice nurse.

Well I am off to clean my house and have a much needed date with my husband tonight. We have been at each other's throats with the stress of everything so I hope we can just have a peaceful night out.

Carrie, Babs, Donna and all others out there have a great weekend.

Praying for you always,
Dawn

imbkuz
Posts: 52
Joined: Apr 2009

Maryann I am so overwhelmed right now with life and I just happened to check the postings and there you are. My angel.I remember the first time I posted with my problems there you were to give advice and share some of your life 's challenges with me. I wish I could take your pain because no matter what I do here it's never enough and one step forward and thirty back.I can't get into it here. I am praying for you but I am questioning my faith a little like you because I don't understand why some people just have so much on their plate and yes everyone has problems but not too bad. I guess I'm a little angry now because why you and your family, why mine, and why Carrie's mother, Dawn's fil when there are some really nasty people out there. Why this is happening to you and your family I have no answer. I'm so sorry for your daughter. I can't imagine what she is going through. Maryann my heart aches for you. If you're feeling better no one can take that away from you.Has this been the only doctor treating you my mind is in a fog and I don't remember. I love when people tell you that you have to eat. You know you have to eat Duh! You're doing the best that you can.I know people mean well when they give advice but they have no idea. I had another incident today but I won't go into it now. Can the doctor prescribe some kind of nutritional supplement however you have to take it. Maybe you will find Hospice as pallative care right now and see how it goes. I know and feel that you're fighting and not giving up and even though I am a little down on my faith right now I still believe in miracles.Please let me know if there is anything I can do if you need to find treatment elsewhere and what else is available, whatever, you name it. I still am praying for you and your family.
Your Friend
Babs

imbkuz
Posts: 52
Joined: Apr 2009

Maryann hope that you're feeling pretty good today too. I may be getting ahead of myself but I found this on the ACOR site. Some doctors that treat Papillary. If your family can't call maybe your doctor can consult with them. Here's the names that were posted:

Dr. Janice Dutchers in Bronx, NY Her secretary is Kathy Burton 718-304-7201 email is jpd4401@aol.com

NCI/NIH in Washington,DC Dr. Maria Merino 301-496-2441 email mjmerino@box-m.nih.gov

Next is a trial in San Franciscoat Mt Zion Hospital at Diller Family Cancer Center-Dr. Andrea Harzstark(sp) XXL880 Foretinib trial

Maybe I'm just getting ahead of myself here but maybe there is a reason I just opened this post on ACOR this morning. Please keep me posted. I hope that you get this since you haven't emailed me back. Guess you can only do so much. I'll email Dawn to tell you.
God Bless Maryann
Babs

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I'm back from my road trip, at work, and have too much work to catch up on to give much of a reply or input today. I really had fun with my grandson, even though we travelled many miles in 100 degree weather over the 4 days.
Have my oncologist check up today, with lab work. I hope all is well then. Meanwhile, I feel great and actually got rested while on the trip.
More another time. And Maryann, glad to see you back on the post.
Donna

corey50
Posts: 73
Joined: Feb 2009

hi donna,
just wanted to say good luck with your oncologist appt. and hope all your labs come back good.

imbkuz
Posts: 52
Joined: Apr 2009

Hi Donna
Glad you had a great time with your grandson and you're home safe. Bet it went too
quick.
Hope all goes well with your lab work and doctor appt. Keep us posted. Main thing is that you feel great!
My hubby goes for CT scan and bloodwork after his first cycle of Sutent this Thursday. So I'm crossing my fingers and anything else I can cross:) I was ok up until now and now I'm scared.
We are all really concerned about Maryann. Today was her first day with hospice nurse and I am holding my breath to see how things went. I am praying for her.
Take good care
Babs

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

To heck with reading a manual on the laws we have to follow to conform to the Bureau of Alcohol Tobacco Firearms and Explosives. (We use explosives in our business.) It's time to share.
Nurse appt. yesterday went well. My BP is a little high-but that is an almost daily fluctuation. Lab work won't be back till today, so I'll go in to pick up a print out tomorrow. Had my next CT scheduled for mid-September, and I'm planning on a good report again!
I had a great 6 day vacation. First day, I drove 250 miles to my daughter's home in Beaverton, OR; visited with her and the 2 boys; and spent the night. Next day we were up early since younger son has summer school. He's also the baseball nut, so my daughter spends lots of time driving. And this week she starts summer school -1 more class to add to her Special Ed teacher certification.
So off we drove, with Omar a bit teary eyed knowing he'd not see his mom and bro for 4 days. We stopped a Bonneville Dam on the Columbia River and watched salmon go thru the glassed area fish ladders and the yucky lamprey eels sucked onto the glass. and the water crashing out of the spill way turbines that generate electrecity for most of Oregon and even into California.
Then it was on up to Maryhill Museum across the river in Washington. The developer who created the museum also built a mini-Stonehenge as a WWI war memorial. Since Omar has already been to Stonehenge, it was a bit anti-climactic. Then it was back to The Dalles to go thru the Columbia River Discovery Center. They had lots of exhibits about Lewis & Clark and the Journey of Exploration. They had a cool kids exhibit, where we practiced loading a minature keel boat with freight so it didn't tip. We left it perfectly balanced and walked away. The next kids to came up to it, moved one cube 1/4 inch and everything tipped onto the floor. The mom about had a fit until I said we had "booby trapped" it for the next person. That night we had a planned dinner date with one of my college roommates.

The next day we headed thru hot wheat country and hilly/winding roads in the high desert. They were harvesting winter wheat and I ended up with gritty eyes for the rest of the trip. While we were travelling, we talked about local politics in the region, environmental and economic issues, local history. We did one of those "last stop for 67" miles places and refueled on gator aid and Reese's PB cups. (Little Bro is deathly allergic to PB, so there is none eaten in the house.) Of course, storing them even in an ice chest doesn't help much...they still get pretty droopy. The store only needed a pot bellied stove and a couple of more guys in cowboy hads to look like it was straight out of a movie. Except they had an espresso counter.
We drove ...and drove...and drove, and ended up in the town of Fossil. It's all of 10 blocks wide and about 15 blocks long, has the only high school in the county and probably a population of about 250. But hey, there are just that many more ranchers living outside the city limits. The motel looked like it had been built in the 1950's, but it was the only place I could make a reservation. After we arrived, we went to the hill behind the high school where we could did fossils for free or without a permit. We ended up with several fairly good leaf fossils of plants that grew there 37-40 million years ago. The next morning at breakfast, 2-3 tables of locals were talking and one guy asked if the others had seen the dead rattlesnake that had been run over on Adams St. (Now I have bear, deer, bobcat, rac****, possum rabbits, lots of birds, and evidence of cougar and elk going thru my back yard, but no way would I want to live where rattlesnakes live,) The motel had a low ceiling, which Omar found out the hard way. He decided to jump up on my bed, and he bonked his head and fell. As he said, "Mom would call that an Omar moment."

Road Trip Day 3 took us SE again with the destination of two units of the John Day Fossil Beds and Paleontology Exhibits. It was 100 degrees and a hot wind that sucked the breath away. There is a working paleontology lab where they were working on rock ecrusted bones under microscopes. We decided to forgo the 1-2 mile hikes in the sun to get to where one of the archeology teams was digging. Instead, we stayed inside and worked on a jigsaw puzzle that someone had started in the classroom. After finishing, I told Omar he'd make a good paleontologist since he loves dionsaurs and fossils, has patience, likes computers and can work by himself. Then we headed west to the Painted Hills Unit with strata of different colored rock that are exposed so it looks like stripes. We replicated a picture of his dad that we took when Omar was 2 and we visited as a family. Except we had to turn the white t-shirt wrong side out to not show the cholate smudges and cheesy dorito smears.

This part of Oregon is really a tough place to live. It can be 20 miles between ranches and a town might only have 50 people living inside the city limits. It's cattle and hay country with a little pine timber thrown in for economy. Otherwise the slopes are covered with grass, juniper and sagebrush. Kids can be bussed 50 miles to the nearest school and think nothing of it. Some ranches in wider valleys have their own landing strips to fly in and out. But it is beautiful where it can be irrigated and the green grass is lush.

We finished the day at a resort in Redmond, and Omar again had a hamburger for dinner. Hey, why mess with things...he was on a roll. I gave him a choice of going swimming -by then he needed a sterilization dip in a chlorinate pool, or taking a shower. At 13, things were getting ripe. (Dawn, see what you have to look forward to.) So the next morning, it was shower, eat breakfast and head for home over the Cascade Mountains. At the McDonalds in Salem we ran into a troop of Boy Scouts (one kid from Omar's school) who had been on a week long camp out. What a batch of filthy boys with charcoal smears, food, pitch, oil, and just plain dirt on body and clothes. But they all had on wonderful smiles.

The rest of the day at my daughter's home, we just relaxed and visited. Omar got on the computer to play his ongoing game with buddies, my daughter and I caught up with week long events, little league games, dr. check-ups, fixed dinner and watched a movie. Almost 10 year old Khaled and I snuggled on the couch and took a nap...then shared a box of Jr. Mints. He dropped one between us, which melted to my bottom. The next day, Sunday, I headed home -with a stop at Costco and arrived rested and refreshed, and with a little dirty laundry.

I have no idea what Omar will remember from our road trip, but for me it was a chance to share myself, my thoughts, feelings and my time with just him. I hope he remembers that I loved and cared for him enough to want to spend time with him, that I asked questions about his intersts because I really wanted to learn about them, that grandmas can be indulgent and still have discipline, proper behavior is an expected part of life, that laughting is great but not at someone else's expense.

Enough philosophising. I'm glad to catch up on everyone's lives. Maryann, welcome back; throw your food off the high chair tray if you don't want it like the kids do in cartoons. Carrie, at least you don't have Jr. Mints on you b*** after going to the show. Dawn, I thought of you when my grandaughter opened the door to check on me in the bathroom. Babs, hang in there; make hubby laugh by drawing a happy face around your belly button and do some ab crunches while standing in front of him. And to the rest of you who joined this frightening zoo of a life, make the most of every day that we are living.

Love to all, Donna

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello Ladies,

Well Donna I really enjoyed reading about your adventure with your grandson Omar. The way you talk, you remind me so much of my own grandmother who passed away shortly after the birth of my first child (7 years ago). Your grandson will always treasure that time with you; at 13 years of age, he may not tell you this, but trust me, those memories will always stay with him. I really need to try to get out to your area of the country for a visit. It sounds so different than northern Kentucky where I now live and Ohio where I was raised. How did all of your tests go? Did you check out ok?

Babs, I think your husband is having his scans today. How did that go? I am praying for you and sending positive vibes your way.

Maryann, how did the meeting with the hospice nurse go? I hope you are feeling good this week.

Carrie, how have you been? Probably you are pretty busy with work and living the party life of a girl in her 20's.

My fil is still feeling great, although his blood pressure is still a little high.

I am excited for this weekend. I am traveling 2 hours north to go out with a couple of friends from college on Saturday and then spending the night with my mom. I am actually leaving all 3 kids here at home with their father. It is the first time I have ever left Addison my youngest, but since she is 2, its time. I'm leaving her with her own father so she'll be in good hands.

Have a great week everyone. I hope all of you are feeling good and living it up. ;)
Dawn

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I picked up my labs-CBC & CMP today. My white and red cell counts are lower than age/sex range, but a little better than May labs. Creatinine was elevated, and eGFR low, but again they fluctuate close to reference range. And as we know, those last 2 are affected by only having one kidney.

My husband was dx'd with kidney disease last fall, and I finally got thru to his brain about changing eating patterns. Even with 2 kidneys, he had problems. Things are better now, but his work hours have been horrible since the middle of May, and he grabs fast food as he goes thru town. Too much salt. Meanwhile, I fix good meals, and eat my left-over steamed veggies on rice for lunch.

Had my teeth cleaned on Tuesday and had two fillings that had started to wash out around the edges and allow decay to start. They were replaced yesterday and I joked to the new dentist (former one sold the practice to partially retire) that the fillings he replaced were probably older than he was. He took it well. The first visit, he asked about the family name and I mentioned who in his home town was related. My husband's great uncle delivered the dentist's mom.

My husband had wanted to take me out to dinner last night - not with my face still half numb and sore. So tonight its dinner and grocery shopping. I have learned that if I feed him first, he doesn't put as much snack food in the basket while we're at the grocery store.

Thanks for the compliment, Dawn. It's fun being a grandma. I wrote a heartfelt letter to Omar thanking him for going with me.

He's had it rough for the past 3 years...actually the whole family. My daughter taught school in Kuwait for 15 years after the war and is married to a now retired Lt. Col. in the Kuwait Air Force. They are still waiting for his immigration visa to be approved so he can move here with the OK to work if he wants. There are all sorts of support groups for families of US military, but not for their situation. At least he's been able to come here several times on a visitor's visa, and they all met for vacation in England once. US immigration is so fouled up, it's no wonder people come in illegally. The various offices that send out the "next set of forms" don't even have communication with each other, so there is a lot of wheel spinning. My daughter finally contacted a Senator last fall, which helped some, but the process is still going on.

I've mentioned our Relay For Life. I decorated the baton (12x1" dowel) for out team and it won First. We got gift certificates from Dominoes, so the Cancer Support Group will be having a pizza lunch & potluck for our meeting on Aug. 3.

Time to tackle a desk project, the story of my work life.
Love, Donna

imbkuz
Posts: 52
Joined: Apr 2009

Donna lee your grandson is so lucky to have a grandma like you. You sound so feisty now. God Bless you.
Dawn have a fabulous time this weekend and I bet after this your husband will appreciate you even more after seeing what it's like taking care of the kids.
Carrie hope you're doing well and not a day goes by that I don't think of you.
Yesterday my hubby and I got some bad news. I am shaking as I write this but his mets in his lungs grew after one round of Sutent 50mg. And possible metastasized to liver. The doctor said this was unusual.He originally was really hopeful with this drug.I'm so sick of hearing those words because we are always the unusual ones. We now have to wait for a special pathologist to look at the CT scan to see if he could con't. with Sutent but right now on nothing until we find out today or by Monday to see what to do now.(On the way home from hospital I had another crisis to deal with and to be honest I don't know what to do anymore so I have more to deal with) The look on the nurses face said it all. We'll try to keep him around and comfortable as long as we can. And that they will try to be able to get us to go on that weekend away. So now my friends I need Gods intervention and all the prayers we can get for all the crisis' going on in our lives.
I'm really sorry wanted to post good news.
God Bless
Babs

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

Babs-so sorry to hear your news. I know you are feeling devastated. Your husband is probably going thru so many thoughts-anger, frustration, why me, not yet, etc. etc.

It seems Dr.s on the east coast do more with the drug therapies than they do in Oregon. Is there a reason why further surgery is not being offered as an option to remove active sites? Just a thought to put out.

My prayers are sent your way. Try to have a fun weekend as a family while the weather is nice.
Love, Donna

Loretta58
Posts: 6
Joined: Jul 2009

Thank you for your positive attitude. I lost my Mom last month and it has left such a large empty space in me and our entire family. This group seems to be so supportive of each other that I almost feel I'm intruding, but I could use a little bit of an upper right now.
Carrie, my Mom also went through a lot of delays in treatment because of other problems caused by the cancer. In effect the delays are what killed her.

We are all trying to move on, but we have so many unanswered questions. Has anywone out there experienced having to deal with "Hospitalists" because their primary doctor no longer does hospital visits? Was anyone else referred to an oncologist before the biopsy was done? (We later found out that Mom probably should have seen a urologist first.)

I've posted my story on my About Me page if anyone is interested.

My prayers and hopes are with all of you ... Carrie, Dawn, Babs, Donna,Maryann, and sallyvel

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

Loretta58-Sorry about your loss-but welcome to the good ship "Hope." Sometimes the waves get pretty high, and other times things just sail along. I'm sure the others don't mind we saying you are welcome to join in. After all, this does not seem to be a cruise club of exclusivity.
My local hospital has created the position of "Hospitalist." He seems to be very effective and definitely frees more time for an internist to see patients and relieves them of the night and morning rounds. The one we have has a Masters in Theology, so is very compassionate and received the Palaiative Care Physician of the Year award.
In 2006, I went to my internist for a regular check up, had labs and was sent for Ultrasound because maybe there was a gall bladder problem. The bad news came next day from my internist, I was referred to an oncologist, had a CT, then bone scan, and referred to a team of surgeons (urologic/oncology specialist; thoracic/oncology; and medical oncology at a teaching hospital.) A month later, I joined the gutless wonder brigade. There was no biopsy that year; but the following year, with a node recurrence, they were able to confirm with a biopsy, then do surgery. The year after, another node sprouted, but it was not in a position to biopsy, so was confirmed with a PET scan and more surgery.
I don't know that seeing a urologist first makes that much difference. It probably depends upon the diagnostic abilities of the Dr.and his/her experience. I'm glad I went out of town for my BIG surgery because there were a lot more brains working together. I've never been to a urologist, yet. Altho I've accompanied my husband to a nephrologist.

Keep your hope afloat and emotions on an even keel if you can. Have a good weekend.
Donna

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi everyone,
Haven't posted in a while, but I've been emailing with Dawn and Babs. I've got a cold again. Last one I had was the week mom died and symptoms are the same, too. I had to take Wednesday off, returned to work yesterday, and had to take today off. Had restless night with sinus headache and congestion with sore throat and coughing, but I've been taking cold medicine, and think I'm doing okay. I hope I'm okay enough to go to my sister's fiance's brother's house tomorrow to watch a movie as we've been planning all week to do.

I finally got some of the picture frames done and dad and I hung them up on the wall in the living room the other night. They look great. That's three down, two to go, though. I'm also trying to get back with the painting I've been starting.

Dawn, I'm glad to hear your fil is doing okay? How's side effects going? And how about you? Are you doing okay? I hope your weekend goes okay. Look forward to hearing from you.

Maryann, it is so good to hear from you. It's like old times in a way. I'm sorry you have to be going through all this. I know what you mean when you talk about people always trying to make you eat and how they don't seem to understand that you simply just can't. Dad was like that with mom for a long time there the last few months. Mom used to sit there at the table, when she still was able to, and piled food on her plate, tried to eat, and either couldn't eat but a fork full or would go throw it up. Dad used to say "I don't understand why you can't just make yourself eat it...just force yourself". She just wasn't able to; had something to do with not just the cancer itself, but things started to taste bitter or like they had a different taste to her. Anyways, don't let someone try to tell you how you feel or how you should be eatting more, etc. I think people just want to help, but don't really realize the extent to what someone suffering cancer really is going through. Anyways, I hope you are doing okay, spending time with your children/family, and so on. Hope to hear more from you.

Babs, I am so sorry about the bad news your husband has just received. I feel so awful. I know it is hard and you probably feel like throwing your arms up to the sky and just screaming out (it's okay to do so, too). Sometimes things just seem like they spiral out of control, one bad thing right after another. We got lots of that with mom. She never seemed to get a "break"; never seemed to get to hear anything good. You had days that seemed almost normal, like things were going okay and you had a bit of hope in you and then bang....someone slaps you in the face with bad news and your world comes crashing down again. I feel for you and your husband right now and I wish you and your hubby did not have to be dealing with such news. I can only imagine how your son is taking it right now? I wish I had some words of advice to offer you, but the only thing I can tell you at this moment is to let you know that good thoughts and prayers are coming your way. I hope that your doctor has some other recommendations for treatment options, though, to offer your hubby,...come Monday, you said? Please keep us updated.

Donna, I am glad to hear your labs turned out okay. Those numbers do tend to flucuate. I can remember that everytime mom went to her cancer institute and got her blood tested, her cumadine levels were always something different. I hope you are otherwise doing good and that your weekend will be enjoyable.

Loretta58, it's nice to meet you and like Donna said, "welcome". I have never heard of an internest or Hospalist before. Not sure what that is, really? But as for the questions about seeing a urologist: If I had to recommend anything to anyone experiencing unexplained lower back pain or what they think may be kidney stones, it would be to recommend they see a urologist. If you read the opening post that I first created under the posting title "Papillary Renal cell Carcinoma: Anyone a survivor or has experienced this?", which is listed under the Kidney Cancer posts, you will get an idea why. My mom started out with back pain, went to the doctor, got scans, etc. and no one could explain what the back pain was from. It wasn't until months later when she thought she'd passed a kidney stone and set herself up with a visit to a urologist, that her kidney cancer was found. So, to answer your question, I don't know if it's the proper thing to do in this situation-to see a urologist first, but in my mom's situation, if she'd seen one first instead of waisting time with regular doctors beforehand, she may still be here today. Afterall, my mom's urologist that she went and saw that day, is the one who diagnosed her, the one who told her she'd have less than 5 years to live, and the one who saved her life through surgery, giving me and the rest of my family an extra year to be with my mom. Now, it's a different situation if you're someone who's been already diagnosed. Because with mom, a urologist diagnosed her and did her surgery, but there was also an oncologist on the surgery team as well as the urologist. Then the oncologist took over mom's care after she survived surgery. So, really it may all depend on what the situation is. But anyways, I'm sorry that you too have lost your mom. It truely is the worst thing to ever have to experience in life. It leaves this great big emptyness behind. It's like you start living a completly different life afterward. Everything changes, nothing's the same anymore and your left here on earth, feeling sometimes alone, sad, and angry and more importantly... left without a mother. I was thinking the other day while I was sitting at work about how it was going to be so different this Christmas...I don't know what made me think about it, but mom always did Christmas and she always made it special. She's not going to be there to go shopping with, wrap presents with, I'm not going to get to see her handwriting on a name tag anymore, not going to get to go do our traditional christmas ornament shopping at the antique store, not going to get to eat her Christams cooking anymore, or help her decorate the tree, and so on. It's a hard thing to adjust to and as so many people have told me this past month, it's just going to take time. But anyways, if you need someone to talk with and share memories with, or need support, I'm here to listen, and I know the others are here, too.

Well, I'm going to crawl in bed now and watch a movie or something. I'm coughing and well, I've pretty much done nothing all day, except that dad and I just got back an hour ago from eating at a local sports themed restaurant (I don't like sports really, but the restaurant is a neat atmosphere to eat in). Well, bye for now. Talk with you all later and my hopes and prayers for a good weekend go out to you all.

Carrie

sallyvel
Posts: 7
Joined: Jul 2009

Hi, just to let you know what has been going on in our lives. I have only posted a couple of times previously but have followed your stories for well over a month and am starting to feel that I know each of you a bit. All you stories inspire me and make me feel that we really have been fortunate in finding my husband's cancer early.
We got a surprise call last Friday afternoon asking if we wanted the partial nephrectomy done on Monday. Of course that was great news and we still have no idea how it came about, but are thankful that we didn't have to wait until Oct./Nov as we had been told.
We are both very glad that my husbands surgery is over and he came home Thursday. The tumour was larger that the cat scan report showed and therefore the partial nephrectomy turned into a total. The adrenal gland was left and most lymph node. The surgeon has assured us that he "got it all" but we really want to see the pathology report for confirmation. The tumour was 9-10 cm with no other involvement so I guess that makes it Stage 2. We have hoping that the grade is also a low number.
The hospital stay was NOT uneventful. He had 4 episodes where his BP and O2 levels dropped and required the Race Team to intervene. However he managed to convince them to let him go home this morning (Thursday). I am sure that he told them some stories because he is still very shakey and lightheaded at time. I am afraid that he does not make a very good patient, but I am glad to have him back home and plan to take very good care of him. He is already walking much better and the peace and quiet is having a definite possitive effect. Hospitals are very noisey and he is having trouble shaking the anaethetic (spelling?)grogginess.
It is a relief to have the tumour gone and to be able to get on with our lives.
Take care everyone and thanks for the support.
I will continue to follow this thread and keep each of you in my thoughts and prayers as you continue your fight against this disease.
sallyvel

Loretta58
Posts: 6
Joined: Jul 2009

Thank you for your welcoming comments.

Carrie, I know what you mean about thinking of the holidays. Mom always did the cooking. She didn't drive so we always did all the shopping and preparation together. It's going to feel all wrong this year. On a different note, we've been cleaning and remodeling Mom's apartment for our single 34 year old daughter (my husband and I own the 2 unit duplex). We've been laughing, crying, and at times cursing Mom and Dad for the things they saved. I understand the "Great Depression" mentality of saving everything, but some of the things they saved border on being psychotic! It's actually been kind of healing. We found an old shoehorn/bottle opener, what one has to do with the other I don't have a clue. There are 8 coffee makers - none of them work! And so on. - Just a note, the "cold" symptoms your having sound like my allergies!

Sallyvel, Thank God your husband came through the surgery ok. I've been thinking about you both and praying you wouldn't have to wait. My experience with my Mom told me delays are not a good thing when dealing with this disease. Tell your husband not to rush the healing process. I will keep praying that all the reports come back clear. Also, take care of yourself while taking care of your husband.

Sorry I have to cut this short. Will continue later. (My boss has a project for me.)
'Bye for now and God bless you all.

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello everyone,

I haven't posted in awhile. I have been crazy busy with my kids and my fil has been doing pretty well on the Sutent for now. The one thing that we can't seem to get under control is his blood pressure. It is too high while he is on the Sutent. He already had high BP even before taking the Sutent so I'm sure that is a factor. Anyway, his doctor has warned us that if we can't get this BP down, then they will have to take him off the Sutent. We don't want that because the Sutent has shrunk his tumors big time. So anyone else have BP problems? Anyone find a medication or other treatment that helped?

Maryann, don't know if you are out there or not, but I hope you are feeling good and taking care of yourself. I miss you more than you can realize. I am praying that you are comfortable and feeling good.

Donna-Lee I hope you are doing good too. What have you been up to lately?

Carrie, how are you doing? I know we have been emailing some, but I always love to hear about what is going on with you too. Have you seen any good movies lately?

Babs--how is your husband doing on the Nexcavar? How is your son feeling?

Others out there--hello to you too. I hope this message finds all of you feeling good.

Have a great weekend everyone.
Dawn

imbkuz
Posts: 52
Joined: Apr 2009

Dawn don't ask me why I just happened to glance at site (it's been awhile)God's intervention?....Anyways Maryann had hooked me up to www.kidneycancer.org. Lots of people on there taking Sutent (among other drugs and issues) and they may have a suggestion. Weekends sometimes are slow on the site but I would give it a shot. There are alot of great people on the site too.
Catch up later going out the door.
regards
Babs

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I've been battling this thing for over a week now. I first thought I'd stirred up allergy problems, since I was pressure washing the green stuff off the decks and patios. Also cleaned out the garden tool shed and came across lots of dust and a couple of mouse and/or squirrel nests. It went bacterial, so I've been antibiotics for 9 days; but the post nasal drip makes me cough really hard, so I've been staying away from family, grands, and others.

My dil had her post pregnancy and c-section muscle tears repaired 2 weeks ago. One layer had a 4" separation. She definitely didn't need this cough. My son brought the girls out to pick ripe blueberries. They each got a coffee cup full, which made them happy.

Last week we got the news that my son-in-law has his Immigration Visa stamp. He'll be arriving in Portland on the 12th, so the rest of the family is happy!!!!

Between this cold and working long days, I haven't been on the i-net much. Best to all.
Donna

imbkuz
Posts: 52
Joined: Apr 2009

Wow Donna. No one would ever believe that you have been through so much cuz look at you now. Powerwashing, etc. I'm sorry about the cold though .Please take good care. Sorry about your dil but glad to hear the good news about your sil. Are you taking any meds for the RCC now. I forgot off hand and am actually too lazy to go through 100+ posts:)Donna lee you're an amazing lady. You give me hope but right now my hubby who was so big and very very strong can't seem to do too much. As the days go by, he seems to get less and less energetic. I'm hoping it's the meds.(Nexavar) He really seems to be pushing to get his walks in.Well you take good care and get rid of that cold:)
Babs

sallyvel
Posts: 7
Joined: Jul 2009

We got the pathology report today over the phone. It seems that the surgeon is leaving in the next couple of days for his new post in Calgary and couldn't do our 2 week follow up appointment which should have been done by now (and may not happen until Sept sometime when the new specialist arrives). The surgeon did return our call with the report. We have found out that my husband's tumour was 7.5cm, stage II, grade 3, papillary RCC and all margins were negative. I am not sure now whether he said that it was papillary type 2 or if he was referring to the stage. He seemed quite happy that this was good news saying that papillary had the best prognosis. However from what I have read today on the internet it seems that type I has the best prognosis and that type 2's is much worse for recurrence and 5 year survival rates. The grade makes me think that it is type 2, but we will have to find out for sure. Any thoughts about this??
I asked him to send a copy to our GP who has been excellent through all this and I can get a copy from him when my husband sees him Aug 21.
I understand that there is only a small % of RCC that is this type which makes it harder to get information and treatment in some cases.
I am hoping that you are all doing reasonably well. I too miss Maryann's input in this thread. You are all so supportive of each other.
Thanks for listening!
sallyvel

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi everyone,
Haven't posted in quite a few days. What have I been up to? This past weekend I spent both Saturday and Sunday dusting the living room, vacuuming, and mopping the kitchen floor, oh..and washing clothes of course. I decided to skip getting groceries so I could have the time to actually do the dusting. That was a bad idea, because I ended up at the Walmart after work on Monday, grocery shopping for two hours. Never again on a week night. I'm taking this Friday off. I was supposed to be going to see a movie with my future-brother-in-law's brother this Friday, but instead we decided it would be better to go Saturday. That's okay, though, because taking Friday off anyway is going to allow me to get some need to do things done around here. I'm excited about Saturday though.

Well, how's everyone doing?

Maryann, I haven't heard back from you and am missing you a lot. I hope you are doing okay. I'm sending you good thoughts and prayers and wishing you well.

Babs, how are you doing? Haven't heard from you in a few days. Hope all is well. Is your son doing okay. How about the hubby? It's amazing with such low energy that he is still able to get up and walk. Yes, meds will do it to you, but I think the cancer has it's role in causing the low energy, too.

Loretta58, How are you? How's that cleaning up the apartment thing going?

Donna, you sound like me...busy. I don't know how you do it. Just remember to take care of yourself, while you're out there powerwashing and whatever else. I'm sorry you've got a cold...I know what it's like...hopefully I didn't send you the cold I had through cyberspace =-). That was a bad one...Do you feel like your heads going to explode or your throat's miserable?

Dawn, I'm glad to hear from you. I just haven't emailed a lot this week. I've been coming home from work, making dinner, washing dishes, and running upstairs afterwards to watch a movie or t.v. This is really the first day since I've last talked to you that I've actually been on this computer to see what's going on. I'm sorry to hear that your fil's blood pressure is so high. I think mom had that problem sometimes, but she mainly had a problem with it getting too low, because they had her on blood pressure meds that she really no longer needed because of the dramatic weight loss/not eating thing, because she had been taking meds for high bp for years, before the cancer. So, I can't really suggest anything about lowering his bp, but what about bp meds. Can they put him on any for the periods of time while he's taking the treatment meds?

Sallyvel, I'm sorry your hubby's cancer is papillary. Unfortunately, it's a harder type of rcc to treat, but as you can read, people are having successes out there with treatment. Don't worry too much about it being stage 2; mom's was stage 4 when they caught it. You're lucky in a way, because they've caught it in one of the beginning stages. I'm sorry that you'll haven't gotten a chance to see someone for followup yet. That must have you'll somewhat anxious/nervous. Is your husband doing okay with pain and everything so far? I hope he is handling it okay. Just remember to take each day as it comes. Please keep us updated on how you and he are doing.

Well, its been a long day. I'll talk with you all again in a few days.

Carrie

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