Just Starting The Fight

AprilandChuck

DMike said:

Thanks

Thanks Alice & Fox! April's gonna be a challenge but I'm ready for it.

As you can see nyisles, there are wonderful people here ready to help you keep fighting.

--David

Mike

Have you been doing pre hdIl2 stuff. Lotioning hydrating so on and so forth. It really does help with the side affects and dont forget the bottoms of your feet and personal areas. My husband ended up liking the aveno more than the eucerine . You may have read he had a mixed result from it. If they would have allowed it we would have continued. Get the rest during the treatment you can but most of all stay as positive as you can that really seems to help. Remember the Santa Clause look will disappear pretty quick when the dosing stops. You got this we are pulling for you Its not going to be easy but from what I have observed you kidney cancer patients are a pretty tough bunch! Sending lots of hugs and positive thoughts your way

garym

Scared...

nyisles,

What you are going through is completely normal, we have all been there.  I'll share a little of my story because I think it may help.  My father-in-law was diagnosed with RCC 13 years ago, at that time he was told that short of keeping him comfortable, there was nothing they could do for him.  When I was diagnosed 3 1/2 years ago, seven people close to me (including my FIL) had been diagnosed with RCC, none survived, I know scared!  Now, I'm an oldtimer here where I am amazed every day by the courage, determination, and spirit of the souls on this board, you have come to the right place.  You've heard from fox, did you know he was full of RCC ("too many mets to count"), given a few months to live, and refused to accept it.  He recently passed the one year anniversary of his predicted expiration date and is now nearly cancer free.  The best advice I can give you is read everything there is about him here, it will change you.  His story is only one of an increasing number of long term survivors taking advantage of therapies that did not exist a short time ago.  I have watched kidney cancer go from a death sentence to a nearly chronic disease in a span of a few years and there is hope that it will be far more curable in the near future.  You will get through this and there is every reason to believe that you will tell your grandkids about someday.  Stick around and we'll help you along the way.

Welcome to the club,

Gary

garym

DMike said:

KMA Cancer

nyisles,

It's okay to grieve for awhile. I've been there twice, now with my recurrence. But you have to move on and fight, that will come shortly.

I work on my attitude by staying active. I'm starting HD-IL2 treatment in a week. I had a lot of tests, along with a lung resection, in the last 2 months to get ready for this. During the echocardiogram stress test, the doctor kept telling me over and over I could stop at any time, but I kept on going and I told him during the test, "This is the only way I have to tell cancer to kiss my ****." Maybe not an elegant statement, but that has become my philosphy. By being active and living life, every day I tell cancer I'm not giving up.

That's what keeps me going. You can get through this.

--David

 

 

KMA!!!

David,

If there is such a thing as a perfect candidate for IL2, you're it.  You have the grit, determination and attitude to carry it through, I'm pulling for you buddy.  Let's all shout it together CANCER, YOU CAN KISS MY ****!!! 

Good luck and Godspeed,

Gary

DonMiller

Just starting the fight

I know everyone says to maintain a postive atitutude but it rough and I think I exhausted myself in the beginning with false bravado especially at work.  I am not sure it is a great idea to spend hours reading on the internet and anything written at all before 2007 is basicially meaningless. Don't worry about the surgery.  It really isn't that bad.  If you have to have a nodule out there the best place to have it is in the lung. Anyway I am on my way to Opening Day at Citifield with my boys and I am looking forward to it more then then any other game in my life  ( well except for Game 7 of the 86 Mets Sox World Series).  There really are some good things about this ....for one I can't tell you how little I care about money.

DMike

AprilandChuck said:

Mike

Have you been doing pre hdIl2 stuff. Lotioning hydrating so on and so forth. It really does help with the side affects and dont forget the bottoms of your feet and personal areas. My husband ended up liking the aveno more than the eucerine . You may have read he had a mixed result from it. If they would have allowed it we would have continued. Get the rest during the treatment you can but most of all stay as positive as you can that really seems to help. Remember the Santa Clause look will disappear pretty quick when the dosing stops. You got this we are pulling for you Its not going to be easy but from what I have observed you kidney cancer patients are a pretty tough bunch! Sending lots of hugs and positive thoughts your way

Thanks

Thanks April! Yes, I am doing the pre hdil2 stuff. I'm trying to be sure I'm not the reason there are any problems. Thanks for the good thoughts!

DMike

garym said:

KMA!!!

David,

If there is such a thing as a perfect candidate for IL2, you're it.  You have the grit, determination and attitude to carry it through, I'm pulling for you buddy.  Let's all shout it together CANCER, YOU CAN KISS MY ****!!! 

Good luck and Godspeed,

Gary

Shout it Out

Thank Gary! I'm gonna do this right. Sometimes the kiss my **** cancer line is all I've got, so I use it!

--David

donna_lee

DonMiller said:

Just starting the fight

I know everyone says to maintain a postive atitutude but it rough and I think I exhausted myself in the beginning with false bravado especially at work.  I am not sure it is a great idea to spend hours reading on the internet and anything written at all before 2007 is basicially meaningless. Don't worry about the surgery.  It really isn't that bad.  If you have to have a nodule out there the best place to have it is in the lung. Anyway I am on my way to Opening Day at Citifield with my boys and I am looking forward to it more then then any other game in my life  ( well except for Game 7 of the 86 Mets Sox World Series).  There really are some good things about this ....for one I can't tell you how little I care about money.

We absolutely hate having to welcome you

But since you've joined this extremely selective society, "ya'll just come on in at chat away."  We do not issue hand engraved invites...more like the weird B/W squiggles of ultrasounds and CT's on a computer screen.

My survivors group just said hello to a new guy.  One doc though he had a pulled muscle in his back.  Since he had to leave early to see a different Dr., I don't know the results, yet.  We had some pretty involved discussions this morning with new people attending, one fellow going off today for surgery on the third type of cancer diagnosed within in 2 months, and another young mother being told that her chemo had worked and the tumor had disappeared.  Not too many dry eyes.  There is value in participating in a support group.  Legitimate studies have found that individuals have a 25% better recovery rate and/or survival rate than those who do not have a support group.  And as one guy added..."if I attend four different groups, will I be cured?"

Crying yourself to sleep works for a while, but one day soon you'll awake with a dry mouth from sleeping with your mouth open and realize that you're alive and not dead, so you need to get on with living.  I have been there, not once or twice, but three times.  And sprinkle in the broken ankle/dislocated foot followed by thumb surgery from hyperextenting my wrist and causing a huge nodule on a tendon on my right thumb (using crutches); and then the scare of thyroid nodules (were they cancerous? NO) but had to wait for unltrasound, nuclear scan and a biopsy.  I wan't ready to give up on any of it, but the repeated events can wear you down.

What we are all trying to tell you is that you are learning to be a cancer survivor.  There is no AH HA moment; but you will know you are living your life having had a diagnosis of cacncer.

There aren't any shortcuts to "God grant me patience, and I want it right now."  Laughter is good. Sleep and Rest are required.  Good Nutrition goes without saying. A chocolate donut can do wonders for your morale. Sharing your thoughts with friends and support group makes you articulate what you are experiencing and ultimately help you find your own solution, in time.

On a practical note, get copies of your tests, labs, etc. keep a phone list of contacts, file your paperwork for reference later, take someone to your appointments so you have 2 sets of ears to hear what is said, ask questions.  Don't assume that one doctor has all the answers for you.  Keep looking.  Ask for a referral.  Be your own best advocate.

Now, LIVE!  And that's an order.

We'll touch base another day and keep us posted.

Donna  _Lee

Eliezer2

donna_lee said:

We absolutely hate having to welcome you

But since you've joined this extremely selective society, "ya'll just come on in at chat away."  We do not issue hand engraved invites...more like the weird B/W squiggles of ultrasounds and CT's on a computer screen.

My survivors group just said hello to a new guy.  One doc though he had a pulled muscle in his back.  Since he had to leave early to see a different Dr., I don't know the results, yet.  We had some pretty involved discussions this morning with new people attending, one fellow going off today for surgery on the third type of cancer diagnosed within in 2 months, and another young mother being told that her chemo had worked and the tumor had disappeared.  Not too many dry eyes.  There is value in participating in a support group.  Legitimate studies have found that individuals have a 25% better recovery rate and/or survival rate than those who do not have a support group.  And as one guy added..."if I attend four different groups, will I be cured?"

Crying yourself to sleep works for a while, but one day soon you'll awake with a dry mouth from sleeping with your mouth open and realize that you're alive and not dead, so you need to get on with living.  I have been there, not once or twice, but three times.  And sprinkle in the broken ankle/dislocated foot followed by thumb surgery from hyperextenting my wrist and causing a huge nodule on a tendon on my right thumb (using crutches); and then the scare of thyroid nodules (were they cancerous? NO) but had to wait for unltrasound, nuclear scan and a biopsy.  I wan't ready to give up on any of it, but the repeated events can wear you down.

What we are all trying to tell you is that you are learning to be a cancer survivor.  There is no AH HA moment; but you will know you are living your life having had a diagnosis of cacncer.

There aren't any shortcuts to "God grant me patience, and I want it right now."  Laughter is good. Sleep and Rest are required.  Good Nutrition goes without saying. A chocolate donut can do wonders for your morale. Sharing your thoughts with friends and support group makes you articulate what you are experiencing and ultimately help you find your own solution, in time.

On a practical note, get copies of your tests, labs, etc. keep a phone list of contacts, file your paperwork for reference later, take someone to your appointments so you have 2 sets of ears to hear what is said, ask questions.  Don't assume that one doctor has all the answers for you.  Keep looking.  Ask for a referral.  Be your own best advocate.

Now, LIVE!  And that's an order.

We'll touch base another day and keep us posted.

Donna  _Lee

Survivors club?

We all know the "survivorship statistics" on the web are out of date and reflect largely the situation before the new meds came along.

 

I think we should operate some sort of Survivors Club where all survivors of RCC diagnosis or surgery get sent some sort of coupon on the 5th, 10th, 15th, ... and 50th anniversaries or their initial ordeal!

 

How's about a weekend at the beach in Florida?  ANyone up for organizing this?   ANyone know George Soros or Bill Gates well enough to ask for a donation for it?