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How do you do it

Kw404's picture
Kw404
Posts: 3
Joined: Mar 2015

Hey folks new to contribution, not to reading the posts. I'm really a bit of an introvert but I'm starting to feel a bit cornered by this crap(ccrcc). I had a radical rt nephrectomy August 1 2012 and chased it with a pazopanib test trial. I got the drug or one heck of a placebo given the white hair and 70lbs of weight loss. As I'm sure everyone here knows the CT scan anxiety experienced every 6 months or as your situation dictates, I had real trouble with it. Until my last scan, I finally said "I'm not gonna worry any more". I've been NED since surgery and finally achieved a usefull level of confidence in my condition. Well, then came my scan in early March, my wife and I went out to breakfast and I got the call from my study coordinator. 3 new nodules in each lung the largest 1cm and 8mm etc and so on. I almost passed out, there went breakfast. The nurse told me the doctor had decided this was to be treated as a reoccurance and sceduled me for a CT assisted biopsy stat. The result, benign. Holy cow. My staging is middle of the road 3TA and I have another scan at the end of the month to check growth. I feel good and I'm gonna go all I can till that changes, it's fishing season after all. I'm a pretty young but beat up 43 after military and a law enforcement carreer. 

I suppose I just really want to know, how on earth is a person to put this to the back? I have two young boys and a lovely wife of 20 years. I feel like I'm in a race with this stuff trying to do what I can before it lays me out. I have a HORRIBLE phobia of needles and doctors and this is starting to feel very heavy. I have the utmost admiration for the warriors on this board and if I can glean any perspective I would be hugely grateful. Thank you all so much for the example you have set and I wish y'all the best. 

Thank you

Kurt

Kw404's picture
Kw404
Posts: 3
Joined: Mar 2015

Sorry bad internet

APny's picture
APny
Posts: 1947
Joined: Mar 2014

I'm so glad to hear the lung nodules were benign. That must be a big relief but unfortunately the anxiety before and after the scans is something that will probably always be with us. Even those of us who were fortunate enough to have low stage cancers. With two young children it's natural to stress over your future and completely understandable. The one positive in all this is that every day they make headways with new treatment methods, new drugs, new approaches, so there's more hope. You have had a high stress career to begin with (first military then law enforcement) so you really didn't need this piled on top of it. Hopefully you'll continue to be NED and maybe with time the anxiety will lessen. Not pushing drugs on anyone but perhaps a low dose of Xanax could help with the anxiety. My doc prescribed it for me and calls it pixie dust; that's how mild it is but does the job.

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Kurt,

     I have been fighting this terrible disease since 2011, and have had three major surgeries.  Right kidney and adrennel gland removed, lower portion of right lung removed, brain tumor, and now waiting on surgery date for another brain tumor that was found on March 27.  Scanxiety is something all of us have and I would like to tell you it gets easier, but it does not.  I do agree with APny, I asked my Doctor for something to help with calming me before my scans and I was given Ativan and it is wonderful to go in for the scans not being so nervous.  I am still nervous but not like before, I would get physically sick and throw up, it was the worst.

     You will learn to live around the scans, someone once told me that to keep living is the best way to fight this disease and that is exactly what my husband and I are doing.  We purchased a house boat last year and have been redoing it and will hopefully have it in the water this summer, I am so excited about it.

   We are all here to help each other, post everyday if you like, this site helped me so much and the people on here become your second family.  We all know what you are going through and we will be right there walking this walk with you!

                                              Prayers for good health,

                                               Brenda

Blueraidermike
Posts: 25
Joined: May 2013

Kurt,

You are in great shape, celebrate!   The fact that your lungs spots were benign should make you feel like you got away with something.   I will say it again CELEBRATE!   I can identify, I have been crusing along and had an enlarged lymph node in early March show up, had VATS to remove the node last Friday and awaiting the pathology.  

But hey, I get it, its still stressful.   Maybe visiting with someone can help you deal with the stress that comes with scans.   Whatever happens, stay diligent with your scans, there is a good chance that should you have a recurrance that it can be treated with surgery or SBRT, etc. 

All the Best!

Mike

I am alive
Posts: 316
Joined: Jul 2012

Kurt,

  I have found the Buddhist approach helpful. Basically, you recognize and accept that you have no control over things - never have, nobody does, even those in perfect health - and you let go. You dedicate yourself to living in the NOW. It's all any of us have ever had anyway. And there's a peace to it. Doesn't mean being passive about your treatment - be ever vigilant. But I guess it does imply getting comfortable with your own mortality. that comes with time. Easier said than done when you have two young children at home. That's a heartbreaker. But you can only do what you can do. Sometimes I make a tight fist and then slowly open my hand to visualize and feel  the act of "letting go." This must be particularly hard for you because you come from the military and law enforcement where control is essential. But I often think of soldiers going into battle and marvel how they can fight and remain sane in a ferocious battle- how can young men(&women) walk or drive down a street in Iraq knowing there are snipers and hidden bombs waiting for them? How do they do it, day in and day out? They tell us they trust their training. We trust our doctors. Our job is to live every day as best we can- and be grateful & happy for it - and try not to worry about the rest. Fear always lurks, of course. And sometimes it's more intense then others. But we know what we have to do, and we do it.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

You do what you have to do and do what you can. Change what you can change and screw what you cant. As for the family, I think openness is probably the best policy; they are the best support system in the world.

Kw404's picture
Kw404
Posts: 3
Joined: Mar 2015

Smile

For whatever reason hearing another survivor say "screw it" holds so much more weight than it would coming from any one else. I'm sitting in my motorhome in With my micro pig in my lap and my Aussie next to me and your comments just feel right, thank you. 

That being said I've used alprazolam through three "new normal" situations as the counselers call them and it helps. But I think sometimes comradery is very helpfull, and that is only found here I do believe. I will implement each of your suggestions with profound appreciation and continue to submit and read the posts on this sight. God willing perhaps I can do for another what you guys have done for me.

THANK YOU GUYS

Kurt

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

But you CAN do it. You'll find a way.

Do something good. Keep yourself busy. Look around and see what needs to be done. Distract yourself. Tell yourself to stop it. Talk to somebody. Post here. Hug your kids.

Go get a cheeseburger. :)

Todd

jason.2835
Posts: 337
Joined: Nov 2014

Kurt,

I'm just beginning this journey myself; read my story by clicking on my name if you like (cliff's notes version: Stage 1, grade 2 CCRCC, pT1a, 2.8 cm, radical robotic neph in Oct 2014).  I cannot imagine a time when I will not be worried or thinking at least a little bit about cancer.  As the Falcon said in the second Captain America movie (he wasn't talking about cancer, but the quote is appropriate):

"We all have baggage.  But what we need to figure out is how to carry it.  Is it going to be in a giant suitcase... or in a little manpurse?"  

My philosophy is going to be this: before I found out I had cancer, I always knew I COULD get cancer.  We ALL know that... but when I found out I DID have cancer, what did I do?  I fought it and had surgery and beat it.  I was lucky to have it caught extremely early.  And now that I'm getting regular scans, whatever comes down the pipe will ALSO be caught early.  So I like my chances!  

BUT we're still going to have this baggage forever.  Comes with the territory.  As long as you don't let it rule your life, you are WINNING.

- Jay 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My diagnosis couldnt really be worse. But I know one thing for sure. I'm gonna live before I die

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hey Kurt!

Welcome to our forum!

And thank you for sharing your story. Cancer is a needy creature. Just when you start to relax about things going well....it likes to remind you that it is a part of your life. But so glad that this one was a benign reminder for you!

There is a fine balance and a skill to trying to not let this consume you.  I have my good moments and my not so good moments. But mostly good!! That is the key. I had my right kidney removed December 2, 2013 - the day after my 52nd birthday. A 13 cm tumour, Stage 3, grade 2, lymphovascular invasion and renal sinus invasion. Once that was removed, the only subsequent work is scans. And so far so good. But every once in a while, I start to think about the "what ifs". It does change your life. Now I am making sure that I retire the earliest I can (December 2016!) and have changed other plans for my future to consider all the factors...before cancer (B.C.), I figured I would live to my late 80s....now I realize that may not be the case. I have been reviewing my best financial options, keeping my grown children in consideration  (I am in my second marriage - lovely husband - but I have heard horror stories - and I don't want my family to be one of those horror stories - not if I can help it!) So much change from what I have always planned. But change is good, right? Cancer also reminds you to value all the good things in your life...I don't take nearly as much for granted now! I know a lot of people here feel exactly the same way.

Take care and looking forward to future posts.

Hugs

Jojo

 

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