Fay A. Posted March 14, 2004 Share Posted March 14, 2004 NED: No Evidence of Disease / ED: Evidence of Disease After one of my recurrences I wrote to some folks that " ED was back and he brought a few friends...There goes the neighborhood." I've been thinking a lot about ED, because he is well and truly back. But the more I thought about him, I realized that since my diagnosis I've actually spent more time with ED than I ever have with NED. It works out to NED 8 months VS ED 49 months. And though I much prefer the company of NED, I can continue to LIVE with ED as long as I can keep him and his gang under control. It's like dealing with any criminal element...I have to be vigilant and make the environment as inhospitable as possible for the bad guys. Which brings me to personal comfort zones: People are more afraid of unknown dangers than familiar dangers. And we gravitate towards the "level" we find most comfortable. I won't go into too many details, but I had a friend who was very unhappy with treatment. This person kept talking about leaving current medical team and going elsewhere, but never made the move, even after being warned that the facility had erroneously reported scan results on another patient. Even after learning their own scan results were erroneously reported. It took me a while to understand why this person didn't make the move. Had I had more insight I might have been able to influence this person. I honestly believe that had they made a move they would be alive today. Maybe I'm wrong. But it's how I feel. I feel guilty for not having pushed harder. So, I hope that those of us who have the cancer will take a good long look inside ourselves, and ask ourselves if we stay where we are because we're afraid of the unknown, or if we are there because we think it's our best option. If it feels "wrong" it probably IS. At least that's my experience. No one wants to be thought of as a "difficult" patient, but this isn't about being "nice". It's about survival. Anyway.....ED is back, and he's brought some new friends. I may not be able to evict all of them, but I'm going to make it as uncomfortable as possible. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 14, 2004 Share Posted March 14, 2004 Well said, Fay. Thanks. Don Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 14, 2004 Share Posted March 14, 2004 Fay, I regret to learn that ED is back and I hope you kick his butt out soon. Don't ya just hate some uninvited guests? You have fought so hard and your post indicates you will fight some more to put ED on the curb. Lots of us here are willing to help you help him to pack his bags. Maybe you have spent more time recently with ED than with NED, but ED sure is a nicer guy and he was with you from the get go. You posted earlier about wanting to help out. Maybe you could give lessons or write a handbook about how to get HMOs to do what patients need and Want, instead of what is best for the HMO. ( I think I read somewhere that you have an HMO). You always take the time to respond to others and to help us up stand back up when we are slouching. I hope the rewards for this are many. Elaine Quote Link to comment Share on other sites More sharing options...
Debi Posted March 14, 2004 Share Posted March 14, 2004 Fay, You are such a strong woman, and such a power of example on this board for the rest of us... I go to my Oncologist because he is in town, and I would hope that between him and the lab (which is separate from the Cancer Center), they can't frigg up a test result. I don't trust him as far as I could throw him and I have so many red flags and alarms going off that if he happened to find anything, I would be on the 4 hour beaten path back up to Tulsa in a heartbeat. There is NO way that I would let this man decide a course of treatment for me, and put my life in his hands. Gone long ago are the days that I trust someone just because they have a medical license hanging on their wall. I have no doubt Fay, that you and your perfectly formed pumpkin head will be throwing Ed out on his ear once again. You are a goddess , and the sooner that Ed realizes this, the better..... Quote Link to comment Share on other sites More sharing options...
norme Posted March 15, 2004 Share Posted March 15, 2004 Fay, Ed may be back and he may have his whole army with him but they has invaded the wrong brain. This brain has a smart zone in it so they had better think about moving on, - - now...... I know what you mean about changing drs. It is very frightening. I know when Buddy changed it was for the best but it was still frightening.....Changing didn't work in his case though.....nothing worked.... Quote Link to comment Share on other sites More sharing options...
Fay A. Posted March 15, 2004 Author Share Posted March 15, 2004 Norme, I know it doesn't always work. Techinically it hasn't "worked" for me, either. The disease has recurred, but at least by making the changes I have I KNOW (early) that it has recurred and can try to treat it, instead of having to wait until April of 2004 to be rescanned, which was the recommendation of one of my medical providers, when it might not be treatable. I am sorry if what I wrote caused you any hurt feelings. But I do feel strongly that had I pushed my friend harder earlier on in her journey, she would still be here. I miss her so much. She passed away 3 years ago, and I still miss her. And I still feel guilty, as if I didn't do enough to help her do what she said she wanted to do. I think of you every day, Norme. Much Affection, Fay A. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted March 15, 2004 Share Posted March 15, 2004 Fay, I just want to say that I have come to learn allot from you and others here on the board who are too many to name. I applaud your fighting efforts and if the time ever comes that your done battling Ed, I will be there to applaud your efforts then as well. I have learned allot about cancer, more than I wanted to or should have. Loosing mom last august and now with dad having LC too I have adopted the additude that their oncologist has towards them a little, I am cancer-numb. I am not sure if this is pro-active or reactive on my part but nontheless thats what I am. I know what will happen to dad probably this year. and I know what the end will be like. I wish he had your spirit though, you fight, down and dirty against this idiot Ed and every day your here is a battle won. Ed will not win today is something I wish my dad would say to himself daily, but his montra now is "I am at a crossroads and one road takes me to your mother and one road keeps me from her" I tell him "its only temporary" "you will eventenuially get there and it will be before you know it anyway so why rush it" your journey is taking another trip but you will go home to her someday. I can only say so much but ultimately like you, the decision to fight or not to fight is his. I am accepting of what he does because he is unhappy here without her but still I will be alone without him since mom is already gone. I am not sure if I have a point or if I will ever get there. so in wrapping up I applaud you fay, your the ROCKY to cancer fighter I need to root for. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 15, 2004 Share Posted March 15, 2004 Fay, I hope everything goes as well as optimism will allow!! I wish you nothing but the best, my friend. You're tough, and you know how to look ED in the eye and spit and keep going. I admire that. Hang in there. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Nushka Posted March 16, 2004 Share Posted March 16, 2004 Dear Fay, I admire you so much and appreciate your posts. I wish you the best. So far I only know NED, but I fear meeting Ed one day too. I don't like my oncologist although I do like my radio/oncologist in the same practice. I am starting tomorrow asking more questions and trying to find a group I prefer. You have inspired me. All of this waiting for the proper scans is crazy....if we are to have a chance to beat Ed we have to know first. I seem to be rambling, but wanted you to know that have you in my thoughts and prayers. Nushka Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted March 16, 2004 Share Posted March 16, 2004 Fay, I suppose we must learn to co-exist with that pesky ED. However, one day-hopefully soon he and his little friends will be eradicated. Stay in the fight my dear friend! Cheryl Quote Link to comment Share on other sites More sharing options...
J.C. Posted March 16, 2004 Share Posted March 16, 2004 Fay, Knowing his enemy is half the battle and you will do the other half, so ED will change to NED. The best to you. J.C. Quote Link to comment Share on other sites More sharing options...
KC Posted March 16, 2004 Share Posted March 16, 2004 I LOVE YOU FAY! NOW GET TO KICKING THE H-E-DOUBLEHOCKEYSTICKS OUT OF ED! I'D LIKE TO GET MY HANDS ON HIM MYSELF, THAT RAT B____D! DIE ED, DIE!! SORRY FOR SOUNDING SO EVIL, BUT I'M VERY ANGRY TODAY. Karen Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 16, 2004 Share Posted March 16, 2004 Fay, I'm sorry you are dealing with uninvited company, especially when you don't know the duration of the stay or the plans that company has in mind for you... However, I have NO DOUBT that you'll push ol' ED and his hozer buddies back out (your body is a TEMPLE, not a CATHOUSE, for crying out loud). DON'T blame yourself for your friend's death. Looking back on ANYTHING through the eyes of experience is something you shouldn't do unless it's to gain understanding of why something happened that hurt you. You MAY have been able to sway your friend, but there's no guarantee that the "new doctor" wouldn't have made any mistakes in his/her care! ...and then, there's always that darn beer truck! It is NOT your fault this person died, even with bad care, some people survive...luck of the draw... Take care of you and stop worrying about things you cannot change! God knows, you CAN'T go back, stop stressing over it - and even if you COULD go back, you have no clue EXACTLY what one thing needed to be changed for the outcome you are seeking... Roll up your sleeves, girl! The fight is ON! (and I'm in YOUR corner, all the way). Hogs & quiches, Becky Quote Link to comment Share on other sites More sharing options...
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