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Jayhawk Dan? Joemetz? Anybody heard from them or others MIA?

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Just have not seen anything by them in a while. I was glad to see that Ray (Doc) posted, and also Jeff (Steve and Nat). I am trying to keep up with things but have such a hard time because this site is so difficult for me to log on to, and if I do get on, so hard to post. It all just takes more time than I usually have. I have walked away from the computer to do other things many times and come back and it is still trying to load. Usually it gives up eventually. SO frustrating. And I have to use magnifying glasses to read posts. Anyway, hoping those MIA are doing okay.

Sandy

Chelsea71
Posts: 1170
Joined: Sep 2012

I think Joe is doing okay. I was concerned so I went to Caring Bridges. Things seem good. Must be taking a break.

I've been wondering about Kathleen and Dick.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thanks for the reassurance re: Joe - and I see he has posted here now, so good to hear he's doing okay. I hope we hear from Kathleen and Dick soon, and others.

Sandy

annalexandria's picture
annalexandria
Posts: 2230
Joined: Oct 2011

also Helen...wasn't she facing surgery with a colostomy?  I can barely keep track of my own life, have a hard time remembering what others are doing.  I wish CSN had made it easier to search for people's posts when they did the upgrade!  AA

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I get frustrated here trying to remember what's going on with everybody and not being able to search for their posts. Still frustrated about losing all my private messages, too. And I just don't have the time to spend reading and posting that I'd like. I hope things are going well for Helen - maybe she'll pop in and give us an update. Hope we hear from Dan soon.

Sandy

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Greetings

after the site rebuild I got a bit frustrated and had to take some time away from studying, learning and talking constantly about cancer.

but, I have been doing some personal research to find another opinion or ideas for my battle.

I'm actually doing very well.

Avastin and Xeloda are doing well for me... I'm feeling great, side effects are minimal, and I've been gaining weight. In week 17 of this line of defense.

I've been in a letter writing contest with my HMO to get an "out of network" meeting with Cleveland Clinic, Sloan-kettering or MD Anderson.

I'm looking for another option rather than "maintenance chemo for life".

the HMO approved Cleveland Clinic and I'm going to meet with a Liver Specialist there on Feb 4th. So, I'm excited for the opportunity.

part of me expects to hear "you're getting the best possible care out there" and part of me wants or expects to hear.... "I have another option for you, but..."

I am also back to work almost full time. doing some business travel as well as personal travel with my wife.

February 2013 becomes month 15 of this battle, and it seems to finally be going better and better, rather than the other direction.

I still pray that no one else gets this horible disease and I pray that I will one day be cured of this... but I also worry so much for the future and think way too much about the cycles of this crap and want to make the most of my time and do the best I can with what I have... and I want to one day leave a legacy behind that will help many others for many years... but I don't want that legacy to begin too soon. (ha,ha,ha)

thanks for looking out for me, and I'll try to set more time aside to pop in here now and again.

my best

 

Joe

 

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

So good to hear from you - glad to hear you are better, instead of heading the other direction. My daughter's battle is going on same length as yours, and she is also getting better and better... so thankful for that. But we are also ready, like you, to "kick it up a notch" and be more aggressive in knocking out those liver tumors. Maybe you should check into that, too - liver targeted therapies - HAI, SIRT, etc. - with the liver specialist. Glad to hear you have an appointment lined up and I hope you can get a good plan in place! Best wishes for you at the Cleveland Clinic!  

Sandy

Chelsea71
Posts: 1170
Joined: Sep 2012

More can be done, Joe. Don't settle for less. Sandy is right. You want targeted therapy. Good luck in Cleveland. I've missed your upbeat posts. Understand why you need a break. It all gets to be a bit much at times. What is the point of being alive if it all be cones solely about the cancer. Wise to know when to step back.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Yep, alive and kicking. I got sidetracked getting through Christmas, sending out Christmas cards, etc., then it seemed the site went to heck, and I've lurked some but just haven't checked in. Pretty much the status quo for me, which is probably a good thing. My CEA had gone up slightly to 2.3, but it's back to 1.5. And I kind of had my first "hiccup" yesterday when I went in for my off week blood work. I'd been feeling like crap, couldn't shake the nausea. My temp was a little high (100) and my WBC was low (1.7), so the put me on an IV for a couple of hours, gave me the old $800 shot of neupagen, and sent me on my way. I feel better today. I'm continuing with the lovely folfiri and vectibix. I'm two days away from the first anniversary of hearing the infamous words "chemo for life" and "terminal." It's my goal in life to make both of those not true. My grandson in my avatar, who's now 6 months old, by the way -- and just the greatest kid in the world! -- gives me a zest for life that is immeasurable.

Sandy -- I'm so glad to hear your daughter is doing so well. What a God send that is and I'm so happy for you!

All of you -- keep fighting the good fight and I'll check in a little more regularly. I'm also working lots of hours as a realtor, which is great, but it sure eats up the time.

Love and Hugs to all ((()))

Dan

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

And I'm glad things are going fairly well for you. Glad you feel better from your "hiccup." Your grandson is adorable. I know you know that! Aren't they the best? My grandson is now 17 months old and into everything! Of course, he is just brilliant and all that... I'm glad you didn't have "the talk" with your daughter way back when the baby was new. You are doing well. And who knows? Maybe this will work so well that you will become operable - stranger things have happened, you know. Many people who were told "inoperable" and "chemo for life" eventually got to where they could have resections. So I think your goal to live is a fine goal! No doctor should ever tell anybody they are "terminal." We are all terminal, from the time we are conceived. Hang in there! Good to hear from you. I have had loads of trouble with the site too - mainly, it is soooooo slow and I just don't have the time it takes to read and post here when everything takes so long to load. It' still very slow for me. Hope you check in again soon! My daughter goes to NYC with YES! Beat Liver Tumors as a colon cancer survivor "model" for a charity event for YES! at the Plitzs New York Fashion Week next week! We are so excited.

Hugs to you too,

Sandy

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