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Thank you Everyone

DonMiller's picture
DonMiller
Posts: 92
Joined: Feb 2013

Thank you everyone for all your help over the past several months especially (and I know I will forget people because most of you guys use screen names) Darron, Texas Wedge, Nanosecond, Alice, Mg 1957, Gairim (who for some reason reads the same stuff I do when I should be working), GSRon. I am Alive,  Icemantoo, Toilman & of course Foxhd who has bigger balls then anyone I think I have ever met.

It is hard to believe just a year ago I really didn’t know exactly what a kidney even did or where it was in my body.  I got my scans coming up early next month and while I am nervous I know there are people here who will help me make decisions backed by experience, understanding & knowledge.  I'm pretty lucky to have found you guys.

I do think a move to using real names might not be a bad idea.  My name is Donald Miller.  I am 57 years old.  I have been married to the love of my life for 30 years and we met in law school of all places. We have three great kids who all got very lucky and look like her. I am a pretty good litigator and live just outside New York City.  I am overweight and despite being a fairly smart guy also used to smoke Newport’s (behind my wife’s back of course). My blood pressure has become difficult to control.   Emotionally I have good days and bad days. That’s about it.  Oh yeah I am a diehard Mets and Villanova hoops fan. 

 

Anyway have a great weekend and thanks again!!!

Don

I am alive
Posts: 209
Joined: Jul 2012

A Villanova hoops fan?! I live 5 minutes from the Pavillion! Go Wildcats!

Djinnie's picture
Djinnie
Posts: 751
Joined: Apr 2013

All the best with your up and coming scans Don, what date are they due?

Djinnie x

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Hi Don,

I don't want to welcome you (or anyone else) to the fold, so how 'bout I just say, "Hi?"  As I become more healthy in this kidney cancer walk, my husband inadvertently follows suit.  Each day I juice a nice watermelon/cucumber smoothie for him, twice a day.  It keeps his blood pressure down.  My blood pressure is also elevated as a result of the Votrient, so I take BP Rx and drink the smoothie, as well.  It works for me, too. 

We measure our BP daily and have both noticed elevation if I slack on making the smoothies.  FYI-- If you try it, the watermelon must have seeds, and juice the seeds.

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

...and thank you yourself. We are all here to contribute or learn, or just simply "listen", whatever the flavor or level there is to ones activity in here.

The bottom line is the grim background we all share, which in a surreal way makes us understand eachother in an almost subconscious way. We dont have to explain in tiresome ways what lurks in the shadows created by our disease. In here everyone knows what its like. Im rambling...but just trying to explain the main reason why this site now holds so much value to myself.

/not G but Jacob...

Djinnie's picture
Djinnie
Posts: 751
Joined: Apr 2013

That is so true Galrim, what a great description of the connection between us all.

Djinnie x

foxhd's picture
foxhd
Posts: 1851
Joined: Oct 2011

Don, we all do this together. We share our stories, our victories and our disappointments. I think most of us participate in other forums based on our interest. But none of us here participate for lack of other things to do. So, we open up, listen, and offer suggestions based on our knowledge and experience. We are a unique group. Many members come and go. Some stay way beyond their need to learn new information, and continue to counsel and console. Quite the bond of friends here. There can't be too many forums that no one wants to join (like this one), yet here we are. Arms open. Has anyone not been welcomed? Think not. And thanks for the compliment but undeserved. I only want to project optimism and share some karma.

GSRon's picture
GSRon
Posts: 1122
Joined: Jan 2013

Well, no one yet has told me the secret hand shake...  :).   Yes, a while ago I posted that all are welcome, but none are wanted..  That was meant to say that I wish (as do you all) that there would be a cure for RCC one day (hopefully soon) and this site would no longer be needed.  That is my hope for ALL of us here..

Yes, one day... sigh..

My take is that it is everyone's "job" to hold each other's hand and thus help us all cope and be as normal as possible. Oh wait, I never was normal... heh..

Be Well All.!

Ron

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

As usual, you come straight to the point Fox!

Don, I've found we are a family.  I'm glad to bein yours, or you are in mine, or we are all in one together!  You know what I mean! Smile

Darron's picture
Darron
Posts: 217
Joined: Jun 2013

the support group at my hospital meets during the week, so this is my place to deal with it. A big thanks to all for the ears. Odd, plenty of people give me so much support in my daily life. My wife would trade places with me, my two boys make sure they tell me they love me every night, my coworkers cover for me on infusion days...but somehow this place often gives me ate entry more than anywhere else. I don't feel different, rather I feel like part of a team. Those I mentioned in my daily life, I can't do without them, but this place fills a small void of understanding that they couldn't possibly undeset and, and hopefully they never will.

thanks to all

Darron Gentile

Waxhaw, NC (Charlotte)

garym's picture
garym
Posts: 1651
Joined: Nov 2009

For most of my life I have believed that everything happens for a reason (no luck or coincidence) and that everything works together for good.  When they told me I had cancer I wondered if I had been wrong, then I found this site and the kindred spirits here.  I love the supportive "family" atmosphere that prevails and the variety of people that we are, but if I could change one thing it would be this; Even though my life would be so much less without all of you, I wish I was the last to ever join this club.  CANCER SUCKS!!!

I love you guys,

Gary

NewDay's picture
NewDay
Posts: 166
Joined: May 2012

Gary,

While I hate that any of us have a reason to convene here, this place is a blessing.  Among your contributions is your never waning sense of humor.  If ever I'm having a bad day, I have only to search for funny bonz.  

Thanks to you and everyone for being here,

Kathy

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Don,

I’m a little late in responding to your post but I haven’t been around much and now find myself playing catch-up.

I –like so many others who have spoken—wish you  never needed to find this place. But—now that you’re here—you’ve quickly become a valuable contributor as well as a member of this elite club. Know that we’ll all be pulling for good scans as your one year anniversary rolls around.

Do you know how they say that you always remember your first kiss, your first love, etc.? Well, for me, joining this Board was one of my firsts and one that will always be close to my heart.  When John (one putt) was diagnosed, and I was rambling from one google link to the next, the only common denominator of all those links was doom and gloom. I didn’t realize at the time how dated most of the information was. Thank God—John—who was /is not a computer enthusiast wasn’t seeing the same grim figures I was or I think he may have just given up without a fight. At the very least, he  would have been devastated.  But THEN I found this site—shared it with John--, and, in no time at all, it provided the hope we were so desperate to receive.

This was the place that told me in various versions to take a deep breath and  stop googling. Members then (many of whom you name), took John’s diagnosis piece by piece and helped me make sense of what was going on and shared with me the hope they themselves have. That united bond is the strongest I’ve ever experienced in an online forum, and I’ll forever hold this place sacred.

I guess that’s a very long-winded way of saying I’m with you.  The support, the hand squeezes, and the hugs we receive through this board are very real for us and make us firm believers in long distance relationships. Bless you and everyone  on this board.

DonMiller's picture
DonMiller
Posts: 92
Joined: Feb 2013

I am back from the UK and ready for scans on the 10th. I am not sure why, but I  wasn't anxious about the surgery last year.  When I received the pathlogy report a week  later the Urologist was really upbeat with a basicially 'we got it all approach' . On the way home my wife was all excited and calling friends and family with the good news. but as a read the report in the car I got a sinking feeling my gut.  I started  reading on the internet for the next few days falling into a  pretty deep depression.  Stage 3  Grade 3 . Sinus invasion.  Invasion of muscular branch of renal vein.  11 freaken centermeters.  How could I not have felt this?  All these "prediction tools"  Sloan  Clevland Clinic  UCLA.  "Intependent prognosis indictors.  Kept looking for some good news but found nothing.  I am really grateful I found you guys because as Alice posted you start googling on your own and it's entering a downward spiral. You guys have been great.

Don

GSRon's picture
GSRon
Posts: 1122
Joined: Jan 2013

Hey Don... it does no good to sit and fret..  all them silly statistics are well.. they are NOT absolute..!  Some of us end up on the plus side and some don't.  Even if the odds were worse, you could be that lucky one..!  So, be dilligent, do your follow ups.. and see what happens when and if it happens.  Plus if you have been paying attention, there are a BUNCH of new drugs on the horizon..  So go out and live your life.. every day is now a bonus..! 

Ron - "I don't want a pickle.. jus wanna ride my motor sickle...."

DonMiller's picture
DonMiller
Posts: 92
Joined: Feb 2013
And I don't want to die
Just want to ride on my motorcy ...cle."

I knew that, it wasn't the best song l ever wrote, but I didn't
have time to change it. I was comin' down mighty fast.

But as you all know, and as fate would have it, I didn't die. I
landed on the top of a police car. And he died. I drove away
on the road that he was on. I came into town at a screamin'
175 miles an hour, playin' the motorcycle song.

I came into town, I jumped off my bike, the bike went around
the corner by itself, went up on the stand by itself, turned
itself off.

I walked over to my friend. He was standin' there eatin'
pickles. I said "Hi, what's happenin'?" He looked at me in the
eye and said "Nothin'".

You gotta sing it with that kind of enthusiasm. Like you just
squashed a cop...

 

GSRon's picture
GSRon
Posts: 1122
Joined: Jan 2013

Yes You got it.! Have a great 4th Ron

DonMiller's picture
DonMiller
Posts: 92
Joined: Feb 2013

But what I did have is the same pathology as you and my 9 month scans are a comin up Wendsday morning. On the other hand I used to play a little guitar and if our singer drank too much he used to launch into Arlo Buffett and  Wainright songs . 

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