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life is a bowl of cherries !

katenorwood
Posts: 1803
Joined: May 2012

Got back from my lung re-check today.  A little more than mind spun.  My lung function has dropped to 27%....10 points in 4 months.  In the left lung the noduals have stayed stable (no growth).  But the right lung, one node is not behaving as well.  Up to 3 cm's.  So they sent me home with predinsone and yet another inhaler.  I am having them send me copies of the CT scan and written report.  We have no specialist in ACC in Minnesota.  So I'll be getting a third opinion by sending this probably to MD Anderson.  I'm waiting for my ACC group to advise me on where would be the best resource for this.  I am weaker, and a little more than scared.  It's hard to explain what my body is doing to my children and my husband.  They have always known me to be the strong rock.  I know that acceptance has to be a big part of what we all endure.  I heard the word NED back in January of this yr.  and yet here I sit with the variable of the unknown.  I said time was on my side with this dx as it is slow growing.  Whew maybe not with the lung function dropping at an alarming rate.  I will stay strong...and continue to fight for the answers I need to fight this thing kicking my ass.  Positives are welcomed, as well as any prayers.  Your friend in the fight,  Katie 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You have my thoughts and my prayers....

 Now for the positive..., your one lung hasn't changed, that is a very good thing... Hang in there I have plans for you to be here for a long time...

John

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Katie,

I am always on the side of good so that puts me next to you.  Stay strong we’ve got a lot of stories still to share.

Hopes and prayers for you.

Matt

Laralyn's picture
Laralyn
Posts: 430
Joined: Apr 2012

...at least it feels that way sometimes!

There are studies showing that a positive outlook helps people heal, so we'll be right beside to help how we can and listen when you want to talk. I'm glad you're getting a third opinion since there's no specialist near you.

Have you considered adding in some supplements? I'm not saying to take them instead of care and you should definitely ask your doctor about each one, but some supplements like curcumin and green tea extract are not harmful and have been shown to fight inflammation, improve immunity, and even fight cancer. I started taking them again after the spot showed up on my last PET scan because even if it's not cancer, it's probably some kind of inflammation or immune-related cyst and I want it GONE.

Here's some info on curcumin, for example: Curcumin. I can recommend some other supplements and places to buy them where you can get more digestible versions if you're interested. A lot of common grocery store herbs and supplements are not in a form your body can digest as completely or process quite as well.

 

jim and i's picture
jim and i
Posts: 1561
Joined: May 2011

Laralynn, do you know of a source that has this in liquid or small non jell capsule? We tried curcumin on recommendation of local health food store but the capsule was large and it stuck in Jim's throat until it burst open. Not a pleasant experience. He has that problem with any jell cap. I have read a lot about curcumin and probiotics but haven't found any small enough or non jell cap. PM me if you have a recommendation.

Debbie

Laralyn's picture
Laralyn
Posts: 430
Joined: Apr 2012

The type I take is in a capsule, but here's a press release about a very absorbable liquid form: liquid curcumin

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Katie,

Just when you think... ya know? Truly sorry to hear you got ambushed :(  

Sending positive thoughts and prayers your way!

"T"

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

Hopes and prayers coming your way. No change to one lung can be seen as optomistic news.

Hugs,

Candi

 

jim and i's picture
jim and i
Posts: 1561
Joined: May 2011

So sorry to hear this Katie. Jim's down turn seemed to come on all of a sudden too. On the positive side: I know a man who 30 years ago was sent home to die in December. He had lung cancer which spread to his colon, they had done a colostomy, and everything else but ran out of options. By Spring he was doing great so the oncologist did test, NED! Went in to take a look and reversed the colostomy because they saw no sign of cancer anywhere. The treatment that cured him, PRAYER from several churches. I do not think of this man as a very nice person. Why did God spare him? I don't know. Maybe as a testimony? It helps me get through this uncertain time with Jim's sudden down turn, maybe it will help you. God be close to you and yours.

Debbie

 

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Katie,

You keep kicking ass and stay strong! I am really sorry to hear the bad news. They are numbers to be but the trend does not sound friendly at all. Especially with a NED a few months ago, this does not seem to be to good path to be on. I am sure you will seek out and receive the best medical opinions and you will make the wisest and best decisions for you and your family. Now go fight!!!! don

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

pocket, Katie.  How do they measure lung function?  

Are they saying anything about putting you on supplementary oxygen?  Just thinking you'd feel stronger.....my mom was adament that she was not going to get hooked up (she said "once you do that you get hooked on it....we laughed, because we're all hooked on oxygen).  It did help with her strength tho, a lot.

You're in my prayers....always have been....you are what we call here in Montana.....a tough cookie Smile.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Katie,

Sending positive thoughts and good mojo your way!

Greg

 

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

i am as well as many others here are so bummed with you and your news. 

very surprised that Mayo does not have someone for you! MDA is amazing. will be awaiting news that they can help you. 

prayers being lifted for you and family. 

you will win this fight and we will be here for you if you need to vent

hugs

john 

katenorwood
Posts: 1803
Joined: May 2012

I feel as we have always been very close friends.  There isn't anyone around me that can come close to the understanding I receive here.  My family and friends are very loving, and they truely do care.  But the vibes I receive from fellow fighters brings a tear to my eyes.  I intend on doing my best to continue  the fight. 

To answer a few questions.....Phrannie they test lung function by doing a spirometer test.  And it is read by a computer.  I have had many over the past 14 mo's.  Also on the O2 I'm assumming it will be ordered soon.  I'm with your Mother's opinion, which may be ludicrious to some.  But being tied down to a machine is not on the top of my lists of things I ever dreamed of.  But....I will adapt, and do whatever it takes.  I promise you my friend.

Laralyn....I have read about many things to improve our immune system.  I thank you for this information and promise to explore it !

I think it was John that questioned about the Mayo....they do have improved tx's for lung mets, but again because this rare dx has few people involved, they put their dollars for the multitude.  I agree with this, as if they find a tx or cure for them it may tringle down to the few.

I am still shell shocked but today is a better day.  I giggled at my attitude yesterday morning.  I knew in my heart I was not doing the best, and yet in my soul I went in with a positive attitude determined to blow that darn computer off the charts.  I really thought I had done a good job.  Surprised  And then he pulled up the CT, and first showed me the staples still in my lung from my previous lung surgery.  Wow...15 in a L-shape, with tons of scar tissue.  I'm not quishy usually...but that was a surprise.  Then he showed me the nodual, and I thought well o.k. nothing new.  So I was still hopeful.  Then he lowers the boom.  You lungs are not in a good place, you've lost another 10 % and they were already bad.  I was flabbergasted.  I couldn't even think of the questions I should of asked.  Ever had the feeling you were in a bad dream and couldn't wake from it ?  We walked out and I was numb.  Yes my body is acting up badly....but in my mind I am still in fight mode.  So instead of pondering on this for a few days I'm going in for a hair cut.....and going fishing.  I again want to thank you all for your support, as I transition through this stage in my life.  In my book you are tops !   Katie

 

wolfen's picture
wolfen
Posts: 1169
Joined: Apr 2009

Katie,

Sorry for my late response. Boy, just when you think it's safe to go back in the water, here comes Jaws again. I am saddend by this latest news, but knowing you I know you'll remain in fight mode. If O2 is what it takes, you can do it.

Hope you caught a lot of fish. I enjoyed that a lot when Ron & I had the opportunity to go. Not good with worms though. Just give me a little ol' dead salmon egg.  LOL

Luv,

Wolfen 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

katie,

sweetie if i could i would wave a magic wand and make your ailments and all of ours in our family disappear!  But what i can do is go right to God himself and asked that He bestow on you the gift of healing.  When i was sick i made a pack with God, nothing worse than what i heard that first day, and everytime they came in to talk to me i would repeat our deal and so help me it never did. So somewhere in a quite space where you can be alone with the Lord make a deal "Nothing worse than you already heard" and just keep repeating it and most importantly BELIEVE it!

i will be praying for you and sending positive vibes of healing. 

 

Love ya, Rachel

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

Katie

The one most important attribute we all share as residents of this site is being fighters. We are all your corner as you are in our thoughts and prayers.

I remember fishing. Haven’t done it in many years but boy do I remember how relaxing it was.

Take care and enjoy the day.

      Jeff

     

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

 

Katie

The one most important attribute we all share as residents of this site is being fighters. We are all your corner as you are in our thoughts and prayers.

 

I remember fishing. Haven’t done it in many years but boy do I remember how relaxing it was.

 

Take care and enjoy the day.

      Jeff

 

     

 

Jan Trinks's picture
Jan Trinks
Posts: 447
Joined: Apr 2009

Kate:

 

Sorry to hear about the ambush, but it is positive that one lung has not changed!  So that's good.  Will be praying for you and keep up the positive attitude. Oh, I once heard a story about a man who had a bad diagnosis for some sort of serious illness; so he decided he'd rent/buy old comedy shows and funny movies and spent  great deal of time watching them and laughing a lot.  Low and behold it kept his spirits up and he ended up doing well.  Just a thought, you know laughter is the best medicine.  Good luck and God Bless!

 

Jan Trinks (Basketcase)

debbiejeanne's picture
debbiejeanne
Posts: 2225
Joined: Jan 2010

katie, sorry to hear about the lung.  u r n my thots and prayers.

dj

ILMM13
Posts: 28
Joined: Feb 2013

I'm sorry I didn't see this post before, but wanted to let you know you're in my prayers.  I'm so glad you're such a fighter.  

Regarding the O2, I totally understand you're feelings.  Just want to mention that when my mom was on it 2 years ago, she had a portable O2 tank that fit into a little backpack and went with her everywhere.  She was very against O2 at first, but it was much easier than she had anticipated and she got used to it.  

Prayers and positive thoughts being sent your way.

 

Trish

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