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popping in to say hello !

katenorwood
Posts: 1829
Joined: May 2012

Hello everyone !

I'm doing pretty well after that surgery in December.  Still having issues with the lungs, but no more surgeries.  (ever...wouldn't make sense)  I am completely off of the 02, but get weak very easily doing every day activities.  I remember I could shower, dress and be off to work at 4:30 a.m. in 20 mins.  Wow are those days missed !  But it's all good, I'm excepting my limitations and continuing life.  I did send the information out to get that tumor profile done.  Once they receive the tissue it takes 3 weeks to get results back.  I was told that this may or may not help me with future tx's because of the rareness of my disease.  But I guess it's not even why I'm doing it.  As most of you know, our family is one of those that was unlucky in the draw with cancer.  (as other's as I'm reading on site)  I think it's very important to track not only with current prodical, but with any and all other resources available.  We are thinking if possible to get our Mother's tumor profiled also with Father's permission.  Mom passed 2 yrs ago from ovarian.  Her tissue is kept at the same lab as mine.  It may help to see if there is a familiar (family) link to developing a cancer dx.  Maybe, I'm grasping at straws....but if I can link anything for future generations, then I've done my job to stop the beast in it's tracks.  DNA, RNA is still in what I would call it's infancy, but I feel in time may be the building blocks in finding a cure.  God willing.  I will continue to research and share any viable findings with everyone.  I have been reading everyone's post's but kinda staying in the back ground for awhile.  Know I'm here with you and for you always.    Katie 

CivilMatt's picture
CivilMatt
Posts: 2959
Joined: May 2012

Hi Katie,

 

Nice to hear your (what I will call) your cheerful voice.  It is very interesting what you are doing, since I am HPV+ do you have any recommendations for me?  Truly, finding accurate precursors to cancers would be monumental along with easy testing.

 

I guess we are behaving in the threads since you have been watching without incidence.  Well, enjoy the family discussions and keep it under 72 (seems like a safe speed for you).

 

Your Oregon buddy,

 

Matt

katenorwood
Posts: 1829
Joined: May 2012

Hello Matt,

I have been fortunate to have a library of information on my dx.  The foundation I'm with are guiding me through trying to understand just what the h..l I have, and what the ramifications are.  Did not get this information offered to me by my oncs.  As once again there is no funding in their clinics for this particular dx.  But saying this WHY not ?  The cost ranges depending on the lab doing the typing.  Mine without insurance would run $5800.  I was told as more people are offered this as an option before tx's the price will come down.  I asked, and did the paper work....and now my oncs at the Masonic are all stoked about it.  Really ?  Thanks for making me smile, I always love your replies !   Katie

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

Nice hearing from you, and glad to know you are doing ok.  As time goes by, will your lungs get better adapted to the lower oxygen intake?  I remember my mom talking about how she used to get up, get dressed and ready to face the day in less than a hour....and how later, when oxygen intake was lessened, she felt it took forever to get anything done....ticked her off :). 

Sounds like you've been busy doing homework...this is very interesting stuff (my mom had throat cancer too....so it does make a person wonder about this kind of research).

Glad to know also, that you're hear, even if quiet.

p

katenorwood
Posts: 1829
Joined: May 2012

Hello Phrannie !

My lung function is where it will stay until the good lord takes me home.  Before my dx was found I was at 37% function, and they took another 10-12 % of one lung.  If I'm lucky that was part of the rotten stuff they removed.  Boy do I understand where your Mom was at.....sucks.  But I'm still kickin it, and have no intentions of letting the beast have it's way with how I want to live life !  You are always so upbeat, and a wonderful inspiration for a sunny day !  Thanks P !   Katie

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Hello Back at ya...

Keep the fight, my thoughts and prayers are with you to help kick butt.

John

katenorwood
Posts: 1829
Joined: May 2012

Hello John !

I missed out on a fishing tournament on Lake MilleLacs today....darn it !  We went to the casino and was too late by the time we heard about it.  Though it was a beautiful 20 degrees with lots of sun, I didn't miss drilling the hole in the ice !  Had alot of fun, but didn't win big.  You are another ray of sunshine in my world.  Thank you my friend !    Katie

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Hi Katie ...

So glad to see you posted ....miss your posts but I totally understand you enjoying life ...you are truly an inspiration ...tougher than me for sure.

Ice fishing huh?  I have been wanting to try that myself....if Katie likes it, surely I will too Sealed

Best,

Tim

katenorwood
Posts: 1829
Joined: May 2012

Hello Tim,

Ice fishing (any kind of fishing) is in the blood I think of most Minnesotans.  I grew up in a big family of 8, and enjoyed winter so much.  Sledding, ice skating and yes ice fishing.  Back in the day we didn't have the convience of those what I call condo fish houses.  Man they have bunk beds and fridges in them.  To each his/her own I guess.  We'd pop a hole open, drop a line and sit on a bucket...lol !  You really do need to try ice fishing at least once Tim, maybe we'll have another convert.  You are, and have been an inspiration to move past the bad and get on with the good !   Katie

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

So umm..., does tht involve walleye on a stick, LOL...

Hmmm, visions of a nice fat walleye on a skewer, over some sort of coleman open flame... Can't get any fresher than that.... Other than maybe walleye sushi, LOL. Maybe a little kikoman and wasabi...

JG

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey Katie, it's great from you, and to hear that you are recovering from your surgery, and keeping moving forward positively with your life in spite of the new challenge. You are an inspiration to one and all.  Your resesearch sounds promising, you may be turning over stones that do help future generations, I hope so.  I send you my positive energy, best wishes, and prayers for your continued strength and resilience.  Keep living strong!

PATRICK 

katenorwood
Posts: 1829
Joined: May 2012

Patrick,

Thank you for the thoughts, they make me smile !  All any of us can do is keep pushing forward, I loose ground here and there.  But this monster inside of me right now is quiet....so I choose to live.  I don't know if this new research will turn over anything, but if I can cut just a small piece of the beast and make it hurt where it counts, I will always try.  Your words inspire me to continue the fight Patrick, thank you !   Katie

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