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

bangormom · July 2009

i'm here
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 · July 2009

bangormom said:
i'm here
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

Oh Maryann
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

dawnmomofthree · July 2009

bangormom said:
i'm here
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

So good to see your post!
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

AlwaysHaveHope · July 2009

imbkuz said:
Oh Maryann
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

Maryann,
Thank you. Thank
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

bangormom · July 2009

dawnmomofthree said:
So good to see your post!
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

Hi everyone,
Thank you so
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

dawnmomofthree · July 2009

Maryann Keep Taking Care of Yourself
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 · July 2009

dawnmomofthree said:
Maryann Keep Taking Care of Yourself
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

Maryann I am so overwhelmed
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 · July 2009

imbkuz said:
Maryann I am so overwhelmed
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

Maryann hope that you're
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 · July 2009

imbkuz said:
Maryann hope that you're
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

Hi everyone
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 · July 2009

donna_lee said:
Hi everyone
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

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

imbkuz · July 2009

corey50 said:
donna-lee
hi donna,
just wanted to say good luck with your oncologist appt. and hope all your labs come back good.

Donna lee
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 · July 2009

imbkuz said:
Donna lee
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

Hello friends
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, raccoon, 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 · July 2009

Donna What an Adventure!
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 · July 2009

dawnmomofthree said:
Donna What an Adventure!
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

Lab reports "OK"
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 · July 2009

donna_lee said:
Lab reports "OK"
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

Don't Know What To Say
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 · July 2009

imbkuz said:
Don't Know What To Say
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

Wow!
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 · July 2009

AlwaysHaveHope
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

Loretta58 · July 2009

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.

sallyvel
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.

donna_lee · July 2009

Loretta58 said:
AlwaysHaveHope
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

Not an intruder
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 · July 2009

donna_lee said:
Not an intruder
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

Hi everyone,Haven't posted
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

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

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