Topic: Since the doc's don't seem to know, I'll ask the experts!

Hey all! Lee went for chemo last week as planned, port was blocked, so had to use pick line...all went ok....while he was undergoing treatment he had sometime to chat with the doc...Lee said that he had a very "eye" opening experience...the doc actually told him that he had not, HAD NOT expected him to live this long...was not at all sure what to do since there is NO CURE for this cancer....and that now they were simply putting the cancer in "remission" (in other words buying time!) in hopes that one day there would be a miracle.  Well, with hope on the horizon...Lee contacted the Cancer Treatment Centers of America down in Goodyear...you know the one's who say when all else fails we have all the answers....guess what their answer for us was....the same thing as AZ Oncologists!!! Little discouraging don't ya think!!!! But, the great thing is, Lee is doing a whole lot better....even though he sleeps much of the day away. He is READY TO FIGHT, FIGHT FIGHT!  He even got a tatoo!! Sooo cool! What I really need to know from you all, and I know, I know, it is different with everyone, Lee really does look awful....very thin, yellow, walks real slow, but again feeling good...any insight....normal?  getting sicker inside? Do we keep searching for answers for other hospitals across the country...how bout Loma Linda in sunny California....any experience with anything there? Ummm...I'm thinkin'....what about driving...how many of you out there are still driving...I know it sounds silly...but Mr. Jeff Gordon aka Lee Pehl still thinks he can get out there with the best of them...and I don't think so....so with that, I'm gonna get some coffee, and do some praying!

Love,
Heather

Re: Since the doc's don't seem to know, I'll ask the experts!

Heather, I don't have any answers, but I'm glad that you and Lee are not giving up the fight.  Maybe we can all last long enough for a cure to be found!

I'm surprised that the CTCA said the same thing as the AZ oncologists without even taking a look at Lee.

Re: Since the doc's don't seem to know, I'll ask the experts!

Oh my friend Heather, what can I say? OK, I have to talk to you as I would my daughter or if we were sitting having coffee (wait I don't like coffee). If Lee is yellow why are they not doing something for that?  If you are both in a fighting mood, I would pick up my files and go to a totally new Oncologist and see what he says. Yellow means caution, not stop! I wish you could get him in to see James Cashman, who used to be the director of liver transplants at Good Samaratin. Even a courtesy visit to see what he says, we just have to much faith in him and he is not even our doc right now.  What I am trying to say in my uneloquent way is how could his doctor just let him go when he is yellow?  And by the way what does his tattoo say?????

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Since the doc's don't seem to know, I'll ask the experts!

Heather,

Jim also tried to keep driving, but eventually had to admit he could no longer do it. Had a few scary moments tho'!

It is hard for me to say, as Jim showed no symptoms until 2 months before he passed on & it progressed so quickly. He was not yellow until the last week or so, but he did get thinner & thinner every week, walked slower & then not at all. He also slept a lot. He could not eat much & at the end nothing stayed down & he slept most of the time which was somewhat due to the meds he was being given for pain, itching nausea etc.

I am also surprised that CTCA would make that decision without seeing him. 

He is still feeling good & I assume he is still able to eat. I say keep fighting.

As a side note, our youngest son is a tattoo artist. Just before his Dad passed on he had a friend (who he taught & also worked for him for many years) tattoo a picture of his Dad on his back left shoulder. Jim was able to see it & knew what he had done. Scott will always have his Dad looking out for him. He will be his guardian angel.

I will be praying for you & Lee and everyone else here struggling with this unpredictable horrible disease.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Since the doc's don't seem to know, I'll ask the experts!

You guys are sooooo awesome...we are going to go elsewhere...just need to find my glasses...and get some serious internet research done this afternoon...trust me, I know God has a plan...we need his direction...so far...just which road to get on...and where our next stop will be....Lee's tat is a cross turned into a dagger with angel wings surrounding it...in the cross are the names Jesus, Heather and Emilee and at the top and bottom of the cross in an arch are the words...Saved by His Blood....it is in black white and gray...he wanted Em to know that you only put the names of people whom you love more than anything on the face of the earth on a tatoo....and you know that you will be with those people forever!  I about died when I got mine...Lee said he had been poked and prodded so much he didn't even feel his! I will keep everyone posted!

Love,
Heather

Re: Since the doc's don't seem to know, I'll ask the experts!

Heather,

I have to be honest here. My son has been tattooing for over 20 years and I have yet to get my first tat. I know it hurts a lot. I had told him that I would get one when I turned 50. Then I said I need to lose weight first. (not sure that is a valid reason) Now I am 60 and with everything that I have been through these past months have lost a lot of weight. Maybe it is time. I'll have to think on that. Lee's tat & the significance of it are lovely. May I ask what yours is? Just curious. And yes, do keep us posted.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Since the doc's don't seem to know, I'll ask the experts!

I have a beautiful cross over top a heart lots of little flowers and fillagree, I got it for my first year of soberity from alchohol abuse...it's really pretty, lots of color too...yellow, pink, turquoise, purple orange and it is across my lowerback....Darla...what are you waiting for??!!  Go for it girl...ya got nothin to lose! I'll be cheerin ya on!

Love,
Heather

Re: Since the doc's don't seem to know, I'll ask the experts!

It truely amazes me how much we all have in common here. Our older son will be celebrating 19 years of being clean & sober on Jan. 28 which would also have been our 42nd anniversary.

Your tat also sounds like it is beautiful and has such a wonderful meaning for you. Congratulations on your continued sobriety. You have won that battle, now you and Lee are fighting another one. I know you have the strength to keep fighting.  You also need to stay strong for Emilee.

I think I will call my other son tomorrow & see if he can start to work up a design for me. Thanks for the encouragement.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Since the doc's don't seem to know, I'll ask the experts!

You go girl....and thank you!

Love,
Heather

Re: Since the doc's don't seem to know, I'll ask the experts!

Hey Heather!  Yeah, as his sister, I have to say I was scared to ride a/him but I knew you did and was still here. Actually, I think he drives about the same as he always did. He is yellow. But he looks better with his hair grown out.

Re: Since the doc's don't seem to know, I'll ask the experts!

Hey - Darla and Heather,

   All this talk about tatoos is making me nervous - I like the little pictures - especially if they are dainty, but just the thought of getting one scares the bejeebers out of me!

   Heather, I am glad to read you and Lee are going for another opinion - you both sound like you have a lot of FIGHT, FIGHT, FIGHT left in you, I am glad to hear.  I continue to  Pray for you.

Joyce C.

Re: Since the doc's don't seem to know, I'll ask the experts!

Joy! I am so glad you joined!  As Lainy said....Welcome to the best little club you never wanted to join! You will love being here....it's like family...just like you and me! We need to keep fightin' for that stubborn brother of your's...we need him around like we need the air we breathe! If you have any questions...comments or anything...this is the place to do it....

Love ya sis,
Heather