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Old 07-28-2008, 08:55 AM   #61
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Re: Kidney Cancer Warriors

Thank you to everyone who has written messages to me! I know you all understand exactly what I am going through. The initial shock was like a tidal wave. I felt as though the water was coming from every side, and all I could do was try to keep my head above water. After about 5 days of being a blubbering idiot, I managed to dig deep and gain some composure and now I'm a little stronger but still it is such a nightmare. And the thing that I find so astonishing is that, just as was the case with my Mother (pancreatic cancer), there were no symptoms whatsoever until Dave is so far gone there's not much they can do for him.

Dave is 64 years old and has always been a very hard worker. He's one of those guys who needs to feel productive and useful and enjoys his work. He retired from the US Air Force in 1986 and since then has worked as a broadcast engineer, repairing radio station transmitters and high voltage stuff, working on any problem in the studio or transmitter that a radio station would have. And he loves it. The first "symptom," if you can call it that, was that I noticed about 6 months ago that Dave just looked older. He seemed to be aging right before my eyes. I noticed it rather suddenly and had even commented to one of my friends that Dave was becoming and "old man." I thought that was just normal and dismissed it. Then, in about April, Dave started losing weight. He lost about 30 pounds from April to June. Again, we dismissed it because other than being tired he felt good and was working long hours. We thought it was just stress and working too hard. He would "forget to eat" sometimes when he got wrapped up in work (Why can't I do that? I wish I could forget to eat!). So...we really didn't think much of it because the weight loss and fatigue were just sort of vague and could be explained by the hot weather, Dave working so hard, and stress (Dave's son has been a handful).

Then, in mid-June, Dave got a bad head cold with congestion, sore throat, fever, and a horrible cough. The doctor put him on antibiotics, and the sore throat and fever went away but the cough persisted. So we went back to the doctor and she ordered a chest x-ray. That was on June 25. On June 26 we got a call from the doctor's office. They said Dave was scheduled for a CT scan on June 27. That day, June 27, was the worst day of my life. As we were preparing to leave the radiology department after Dave had his CT scan, the nurse stopped us and told us we needed to go directly to our doctor's office. We knew right then that something was seriously wrong. I figured it was probably lung cancer. But when the doctor sat us down and told us there is a huge tumor (10 cm x 10.5 cm) in his left kidney, a smaller (subcentimeter) tumor in his right kidney, both adrenal glands are cancerous, and there are 30 to 40 nodules in both lungs (some quite large) AND the subcarinal lymph node and other lymph nodes in the chest are large and cancerous, well....I just couldn't believe it. How can a person be that near death and not even know it?? I still can't believe these cancers can get to this point without more symptoms! My mom had pancreatic cancer, and by the time she had symptoms it was all over. They told her she had 2 to 6 months to live, and she lived only 3 weeks. They told Dave that, untreated or if treatment fails, he has less than 6 months to live. But they don't know my Dave. He's a stubborn old fart and a fighter, and he will not go quietly. He's determined to fight this and extend his quality of life as long as possible. When it gets to the point that life is not enjoyable for him any more, then he'll go on Hospice. But for now we're taking one day at a time, fighting this as hard as we can, and trying to enjoy every moment we have together.

Today will be Dave's third Torisel treatment. After 6 treatments he'll have another CT scan. The goal is to shrink the tumor in his "good" kidney enough to remove the bad kidney. At this point, the doctor said Dave is inoperable but if the Torisel works we can get that bad kidney out. It's a longshot, but we have a lot of people praying for us, and I do believe that it helps to think positive. We are prepared for the worst but hoping for the best, and just taking one day at a time.

I thought nothing could ever be worse than losing my mother a little over a year ago. But I was wrong. This is worse. And now, more than ever, I wish my mother was here to comfort me. I feel so alone sometimes. We have lots of friends and people rallying around us, but sometimes when I'm all alone I just feel helpless. I'm a nurse, too, and I know what to expect. I wish I didn't know. That is hard, too. I can't stand the thought of seeing the man I love struggling so hard to live, and every day he's got such hurdles to jump. I just want to cry all the time, but I'm trying to be strong.

So far the Torisel seems to be helping. Physically, Dave feels better since he started the Torisel. He's tired all the time, and he has such horrible sores in his mouth and all over his tongue that he hasn't been able to eat anything solid for a week...but he's not coughing at all any more. Prior to the Torisel he was awake most of the night with horrible coughing, couldn't lie on his back or right side because of the coughing. Now he's not coughing at all. Dave says he thinks the tumors must be shrinking. But oh, the mouth sores. It hurts me just to look at his mouth. I know it must be agonizing for him. And for me, trying to hard to find things he can eat. He's forcing himself to eat even though it is painful.

I want to thank you all for understanding and helping me through this. Like I said, I have been reading messages on this forum for about a month (since the first day we found out about the cancer). I actually feel as though I know some of you! I have kept you all in my prayers and hope you'll do the same for me and Dave. Thank you so much,

Nancy (aka Twiddles)

 
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Old 07-28-2008, 09:48 AM   #62
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lilsis1071 HB User
Re: Kidney Cancer Warriors

Mary Jean & Ellen and Nancy,

Hi to you all. I am so sorry that all of you are going through these challenges that this disease has to offer.

I have been on an emotional rollar coaster myself. I think things are also starting to change for my father. By the way Nancy his name is Dave also.
We will find out more within the week or so. I feel his med (sutent ) is no longer working. And frankly I dont think he will be able to tolerate any other meds. I know he will try for the sake of not wanting to die. But I only wish for him to have the quaility of life. If things were better finanically I would do something out of this worldd for him. However I do realize no amount of money can or will replace the time I have with my Daddy. He is a strong man also but it is really starting to wear on him. I see it , others may not.

I wish you all the best , we are all true warriors and we will not let anyone take that away. I will be here for as long as you all need. I know its different coming from me as it is not my hubby. But it is my father and he is the first man I have loved. I hope you all can understand me when I say that.
My dad and my mom are the next best thing to my own family and I would flip this world for them.

Prayers and thoughts to all.
A Friend Wendy.

Mary Jean thank you for asking. You are such a sweet heart. What a wonderful woman you are. Stay strong.

 
Old 07-28-2008, 08:29 PM   #63
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Twiddles HB User
Re: Kidney Cancer Warriors

Hi Wendy,

I am so sorry to hear about your father. I know how much you love him just by the grief in your "voice" here on the message board. I know how it feels to lose a parent. I just lost my Mom a little over a year ago from pancreatic cancer. Our parents are so special. They've known us longer than anyone else in our lives. They love us in spite of our faults. I will sure be praying for your dad. I also know how it feels to want so badly to do something "special" for someone but are limited due to finances. Wendy, I'm sure your dad knows how much you love him. Why not just do a little something sweet for him like send him a funny card to let him know you're thinking of him.

You know, I have to say....every guy I've known who's name is "Dave" has always been a good guy. I know there must be some rotten apples out there, but my Dave and your Dave are two of the good ones. God Bless you and your Dad, and hang in there. Just take one day at a time and appreciate each good day that you have with your dad. That's all anyone can do.

Love,
Nancy

 
Old 07-29-2008, 04:12 AM   #64
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Join Date: Sep 2007
Location: New York
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lilsis1071 HB User
Re: Kidney Cancer Warriors

Good Mornin Nancy,

Thank you for your kind words and encouragement. I know that none of us want to be on this journey, but it sure helps that we have each other on the way.

Anytime you have any questions or just need to vent feel free to do so. Thats what we are here for.

Listen girls I think its time we start another thread. So I will start with another. " Kidney Cancer Warriors WL" OK. I hope to see you all there.

WL= with love

Have a great day. Wendy

 
Old 07-29-2008, 08:20 AM   #65
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me1957 HB User
Re: Kidney Cancer Warriors

To all the Warriors
So many of you sound so lucky to have the parents you do or did, I am one of those that did not have the best.
But life does go on and no matter if you are losing a parent , sibling , friend spouse whatever to this horrible cancer it still is so awful.
Stan is now in a hospital bed with full care. His eyes seldom actually see me except when he is mad or agigtative then his eyes are clear. Thank GOD that is very seldom. Yesterday was one of those days where there was way to much stimulation and he got angry.
First off I got him bathed , shaved , oral care , hair washed. Then about lunch time the hospital bed came and we had to get him from his recliner where he had been since Sat.{after Sat. evening he was no longer able to actually walk ,} into the bed which was a major job. As of last week he still weighed 257 pounds. Then about 2 hours later the hospice nurse came to check him and he has not has a bowel movementfor about 5 days so she had
To check him and boy did he go off. So at that point we decided no cathetheer now either , he has not voided for about 10 days. No food or fluid going in per say since Sat.
Then the social workrt from hospice came and after all that I just said no more touching if not needed no more talking to him no more anything for that day. It is ok today but I just gave him some medication and he told me to back up just back up.
Nancy in case you don't know I work for hospice, I am a CNA and I LOVE what I do but I also as of last night decided that I will ask for a CNA to come and do my job so I can be his wife which is what I truely want to be.
I praise hospice and am sooo proud of what we do .
I truely believe your hospice will be great inhospice BUT it will never will take the place of your love.
We found out on the last day of Sept., first day of Oct. of last year and like you all , Stan was already Stage 4. His had already spread to his spine and then to liver , now it is so much more on his liver and it has invaded his abdomen.
So now it is just a wait game which is one of the hardest things we all will have to do.
Love to all Mary Jean

 
Old 07-29-2008, 08:29 AM   #66
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Re: Kidney Cancer Warriors

Mary Jean,

You are constantly in my mind. I am so sorry for you, and me, and for all of us in this thread - Wendy, Nancy, britherday, and maybe more that I forget now.
I think it is wise to do as little as possible to disturb him as little as possible. My husband would tell me that his skin was so sensitive that if I tried to sponge bathe him it would be torture. I could not believe that he smelled so good all the way to the end, even his breath, despite not eating and taking the drugs.
I will keep you in my thoughts, that you have the strenght to endure.
A bug hug to you.
Ellen

 
Old 07-29-2008, 11:01 AM   #67
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Twiddles HB User
Re: Kidney Cancer Warriors

To Wendy, Mary Jean, Ellen, and everyone else....

Wow...you guys are the best. I've only posted a few messages on this forum, and everyone is so nice and so supportive. It's like a family. Dealing with this awful cancer is so difficult, it's wonderful to have friends who understand what we're going through with our loved ones. Thank you so much for accepting me into your "family" here on the forum. You are all special people.

Mary Jean, I applaud your decision to give up trying to do all Stan's care yourself and let another CNA come tend to him. That will ease much of your burden and allow you to just be his wife. I know you are going through so much emotionally right now. And I am a nurse, so I sure do know how difficult it is, physically, to care for a bedridden person. You need to protect yourself, too, and keep yourself strong for the days ahead. Trying to do it all yourself would wear you down to nothing, and then you wouldn't be much good to anyone! (I say that jokingly). I do think it is important to pace yourself and take care of Mary Jean through this, too. The last thing Stan (or you) needs is for you to get sick and worn to a frazzle. And the emotional drain this puts on you is more than enough to wear a person down. Dealing with the sadness, worrying about tomorrow...all that takes so much out of a person. You are doing great, just do what you can do and let the others do the rest. I think the hospice sounds wonderful.

Wendy, please keep us posted on your Dad's condition. I've been thinking of you and him and praying for you all.

Ellen, thanks so much for your kindness and encouragement.

And thank you to everyone on this forum for "being there" for me. It is so nice just to ventilate and also to know that others out there are going through the same thing as I am. I was feeling so alone, lost, just full of despair. I know Dave's situation is pretty bleak. He's doing better for now. The sores in his mouth have abated enough that he has actually been able to eat for three days in a row now. We are on a rollercoaster ride, and i never know what is coming around the corner. But at least I know I'm not alone in this, and that makes a huge difference.

God Bless you all,

Nancy/Twiddles

 
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