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I need some prayers for a friend. Her husband has GIST, the same cancer I have. They are alot older, grandparents. He is loosing the fight. They’ve been in and out of the hospital for a while and just this past week she made the hardest decision to stop fighting, no more doctors, no more scans, they just want to spend time together. She called hospice and now she has to give the caregiver roll over to them and go back to taking roll of wife. It definitely reminds me of Abe and Lexi. Ive had my share of hard times during my 10 years with this monster, but I consider myself pretty lucky to be as “healthy” as I am. If I didn’t have the oxygen you wouldn’t know there was anything wrong with me, but there’s also times like this when I feel guilty. I have the same cancer, yet I am not suffering like they are. Anyway,please pray for Larry that he has a comfortable and happy time with his wife and family.
May I ask you something personal? Please don’t answer if it makes you uncomfortable. I am not familiar with GIST. Can you be cured or just go into remission? What kind of problems does GIST cause? Other than the oxygen, are you now on any other therapy?
I have a very good friend who has a rare type of lukemia for the past 12 years and she goes in and out of remission but is never "cured." And each time the cancer returns, it seems to add another spot they have to treat. She is now to the point where there is no therapy that can help her except an experimental drug that costs $1500 a month and Medicare won’t pay it. While she still appears to be okay and she always maintains the sunniest of dispositions, I know she must get despondent with her illness. I fear it won’t be much longer for her. Please add her to your prayers too.
And you should NOT…EVER feel guilty. God has decided when and were you will go home to Him and you have nothing whatsoever to do with that decision. So you enjoy yourself for as long as you can. THAT’S an order!!! :o)
Thanks you guys, you’re the best! I’ll try to answer any questions best I can, I have no problem talking about it, as long as I’ve had this damned cancer you’d think I should know more about it huh? lol. There are people that are cancer free, either from Meds or surgery. We call it dancing with NED (no evidence of disease). I have never really been in remission, after my surgery in 03 wad probably the closest I got, the surgeon got mainly everything she could get and she told my mom all that was left were little rice sized bits all over. I had a football sized one on my stomach and one she removed down in the pelvic region, was the size of two fists put together. Amazes you how I didn’t even know I had a football on my stomach huh? When I found out in 01. All I had was a bit of pain in my stomach for like five days, then my mom made me go to the doc, she thought the mass on my scan was on my liver and she was afraid it would burst. So I was rushed to the hospital. I think you know I’m from small town so my moms doc recommended they take me to Ohio state. If you go to this website, http://www.gist support.org ( there’s no space between gist and support..) there’s all kins of info about it and my story is on there too, under the pediatric GIST and carney triad, you’ll find my story. There are alot more sites out there now that more and more people are being diagnosed with it. I’m considered pediatric GIST, because of some gene mutation. It’s all confusing! LOL.
I’m not on any chemo drug right now, I haven’t been now for about two years when I went into hospice. It quit working anyway, there are
trials popping up but I’m at a point where I’ve accepted it and I don’t want any more trials. I’m on pain Meds, and one for my thyroid and
lasix. When I got sick about a year and a half ago and was rushed to the hospital, when I was released they never weened me off the oxygen, so the night they released me with no oxygen to take home, we were back at the er in a few hours cause I couldn’t breath. I think now I use it more for psychological reasons. Sometimes I don’t realize I don’t have it on or something. I do def need it when I’m out with my mom or friends shopping. I get worn out quick. So did I answer any questions or make you more confused? lol. I hope you go to the site and read about it and my story. But please feel free to ask anything. I don’t have a problem talking about anything. And ok, I promise. I won’t feel guilty anymore!for sharing that with us. I hope that you continue to improve and can soon ween yourself off the oxygen. I think many times psychological habits are much harder to break than physical ones. Good luck!
In a sense, Nora, although you have had this dreadful disease for so long now, God did bless you with one very important quality, and that is your beautiful, sunny attitude. I realize there must be days when it’s difficult to put on a happy face, but I truly want you to know that I have never in my life known anyone who could accept and live with their disease and still maintain the wonderfully warm disposition that you certainly have acquired throughout your fight. You must have a beautiful, strong and loving family, as well, especially your mom, who seems to be right there for you and with you, every step of the way. I wish you a heart full of best wishes and know you will continue to just be our ‘Nora’ — and that you will always know that you, my dear, will always be in our prayers.
Keeping the faith right along with you, I am,
Your friend,
Patti
Well gosh patti, go ahead and make me cry for Petesake, lol. But you are right, if it weren’t for my mom and dad, sister, and entire family, I doubt I could be the way I am. Everyone always tells me that my mom is the nicest lady theyve ever met, and I definetly agree with them. Even though I don’t attend church anymore, I still get that spiritual strength from hers. She’s there every Sunday. Speaking of, our priest came by today for his visit, and anoints me and gives me communion. He’s an awesome priest.
You know what would be so cool if we could all meet someday,I know everyone wouldn’t be able to attend. But wouldn’t that be cool? make it a days of our lives themed party of course! You guys are all really special to me, moved around so much after I got married, but no matter where we moved I knew you guys were just a click away! even when I first started reading the main board when I couldn’t post, man that’s probably 10 years ago too!
thanks for all of your prayers, and kind words. Gotta love my Salemplace family! they’re the best!
There were several of us on another Days newsgroup that decided to go to the Day’s Fan Day in Orlando so we agreed to meet there at the airport and take in Universal Studios (that’s where it was being held) while we were there. Well, then 9/11 happened and the fan day was cancelled but we decided to go anyway. There were five of us who had never met in person before.
We stayed at The Hardrock Cafe Inn which gives you special entrance to the park and rides and we all rented scooters (one lady was rather obese and I had back problems). Needless to say, following 9/11 there weren’t many people there and with our scooters we went right to the front of the lines. Almost felt like VIPs.
Even though we didn’t get to meet any of the cast, we had such a great time that the next year we met in San Francisco (six went that year) and the following year in Las Vegas. It was a blast but then the newsgroup fell apart and we kinda drifted away from each other but we had one heck of a bang-up time while it lasted.
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