Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 <<ramble here understood>> Boy you said a mouthful. As most of you know my two closest daughters have disappointed me the most. Neither of them have stepped up to the plate to help mom. It is down right disheartening. But I continue... Karima Re: Rambling.... Very well said Larry, I can ramble about my hubbys cancer to others but they just dont get it, if I ramble here I feel like I am understood. Make sense? Its like that old saying , you dont know how hard someone has it , til youve walked a mile in their shoes ( or something like that ) Well on this board we have walked in those shoes , weither it be as the patient , the caregiver or the family member Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin to be added at later date Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Very well said Larry, I can ramble about my hubbys cancer to others but they just dont get it, if I ramble here I feel like I am understood. Make sense? Its like that old saying , you dont know how hard someone has it , til youve walked a mile in their shoes ( or something like that ) Well on this board we have walked in those shoes , weither it be as the patient , the caregiver or the family member Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin to be added at later date Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Hi Larry... Thanks so much for writing this...I have been noticing that only one of my 3 adult son's calls and asks about Glenn (not his bio. father - we've only been together 5 yrs.) My 98 yr. old Mom calls, but mostly concerned about me, altho she does ask about Glenn. Hardly ever does anyone stop over anymore. And I've been feeling very alone lately, esp. when Glenn's been sleeping 18-20 hrs. a day. But this is getting better with time and Ritalin rx. The affects from the chemo (5th treatment) this time has been a little stronger, but he's been eating and awake quite a bit. The Home Nurse just came and removed the IV Pump, so he's a " free " man again...LOL I work 4 days a week at a small law firm and I have my own home-based business, which has kept me sane the last year. I always have something to do, but it's almost like living alone sometimes. Do I pick up the phone and call someone... no!! Don't ask me why. I just get the feeling people really don't want to hear about it. But, I wanted to THANK each and every one of you for all your posts, information, support, and laughs. Hugs to Janet...I think she's caught up to Glenn now, since he's missed 2 treatments b/c of low platelets. Friday platelets were up, but neurophils are very low...960 and they had to get dr. approval to treat below 1000. What the heck are neurophils...our reg. nurse wasn't there on Friday. Thank you for being here and thanks for listening, Larry!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! In a message dated 2/6/2005 12:14:22 PM Eastern Standard Time, lwg_art@... writes: Never have I felt like anyone has ever rambled in this group. How often can you express yourself to anyone and they really understand and know what you are going through. The phone doesn't ring, friends and family don't come over as often and even if you did start talking about it to someone you know at times they just don't want to hear about it. So......I think you all for the patience and the understanding that you all have shown and that if we didn't have each other this journey would be a lot harder to deal with..... Ramble on people... Vent... Take out your frustrations and your pain... I don't mind listening..... Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 In a message dated 2/6/2005 12:25:46 PM Eastern Standard Time, jayishome@... writes: Larry, you are so right... The phone really does not ring like it used to, and family does not come over as much... and friends disappeared. Kinda like moving day! So, I enjoin your comments also, and thank everyone in this group for all the kind words and support! ----- Original Message ----- You sure hit the nail on the head, Jay!!! No one's ever around on Moving day!!! Thanks for making me laugh...I needed that! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 In a message dated 2/6/2005 3:42:14 PM Eastern Standard Time, debbied30@... writes: Very well said Larry, I can ramble about my hubbys cancer to others but they just dont get it, if I ramble here I feel like I am understood. Make sense? Its like that old saying , you dont know how hard someone has it , til youve walked a mile in their shoes ( or something like that ) Well on this board we have walked in those shoes , weither it be as the patient , the caregiver or the family member Deb You know, Deb, that is so very true!!! I always knew Cancer was a dreaded disease...and I've known people who were ill with it, going through chemo, even dying. But until you walk in those shoes, you just DON'T know!!! One does feel understood here!! Thanks for being here, Deb!! How is Joe doing today?? And you?? Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Ron...the rambling man!! One of my favorites!! ROFLMBO...struck me funny! I'm sorry you have felt this as well. I just never realized how prevalent it was. Do you know that Glenn's two young adult children, who live 3.5 hrs. away have not been up in 2 yrs....the whole time he's been going through this!!! I think this is unforgivable...and probably plays a huge part in Glenn's depression; altho, I've heard him tell them not to come...don't get that either!!! Martyr?? They do call quite often, but not necessarily to ask how he's doing, rather they need something or have a question on how to do or handle something. Thanks for being here, Ron...and adding your sense of humor. We all need that!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! In a message dated 2/6/2005 3:48:28 PM Eastern Standard Time, rlmiller1@... writes: Larry, I couldn't agree more. I live in the town where I grew up in, so I have a lot of long time friends near by. But once it was known I had cancer, I found out who my true friends and family really were. Even after a year, I still have family members that have never even called once to find out how things were going. On the other hand, there were others that I had not seen for a long time that now call often as well as visiting me while I was in the hospital from surgery. My guess is that some people just don't know how to deal with things like this. I too thank everyone in this group for the knowledge and support it has provided me. How does that song go, " Lord I was born a Rambling man " (Allman Brothers). Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 In a message dated 2/6/2005 4:00:28 PM Eastern Standard Time, jehret@... writes: I am experiencing that as well. I have one sister, actually two, but one is pretty much my best friend right now. And one cousin who has been really attentive, calling and came to visit when they were down here visiting the daughter. One cousin who as least asks me how I am when she wants me to check out the urban legend stuff for her - why she doesn't do it herself I don't know, but easy enough for me to do it. Have another sister who was upset with me because I didn't tell her about my cancer right away. When I apologized she sent me her usual " to a good friend " very large print post card message -- with a will write more later. They live in their own little world. They can't help themselves. LOL Jolene Geez....I'm just totally shocked that this is such a " syndrome " ...Thank God we have each other!!! Take care Jolene...feeling any better than this morning?? Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Hi Donelle , Joe is feeling pretty good actually , he got out of the house WITHOUT us lol for the first time in forever yesterday , he went and helped his younger brother pick out a new (used) truck, The truck was 4,000 but all he wanted to spend was 3500 because he was going to give US 500 bucks! unbeknown to us ! Finally Ben ( Joe's lil brother) told Joe what his dilema was , almost in tears. Joe told him that was WAYYYY to much money just to be given us , and that he needed a safe vehicle for his wife and kids. We have always helped out Ben , and never once expected him to help us out , cause they honestly just cant afford it, So Joe made him by the truck lol. Ben then wanted to see our doc bills , which I thought was sort of odd , but he then grabbed one and said that he was going to pay it , dont you know I cried. Its soooooooo hard for Joe to accept help, he has alwaaaays been the one to help others. If his family every needed money he would always just give it to them , not loan it. Because he didnt want any hard feelings over holidays about people owing each other money etc. Joe has been approved for Social Security Disability but it wont start til March/April Enough of the woes lol How are you doing ? Glenn? the grandbaby? Take care and thwap Glenn's kids for me Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 found mets to the abdominal wall lining 3 lymph nodes involved open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin to be added at later date Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 That is just way too sweet of Joe's lil brother. Tell Ben I'm sending him a big hug for being such a good brother and a great human being! Yahoo on the Soc. Sec. coming through!!! Is this permanent?? Is there no chance he can go back to work? I can never remember where everyone is in their treatment, disease, etc. Sorry. Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Deb...I forgot to tell you that I'd so dearly loooooooooove to thwap Glenn's kids!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 STOIC...what a great word!!! Yep, that's probably a lot of us...and yet I cry at the least little thing on TV...like the beginning ceremonies of the Super Bowl!!! I was overwhelmed with those old guys marching on that field like they were still in the military and still serving their country...it was awesome!! And, Larry...you're allowed to ramble. Remember?? Glenn seems to do well the first 2 days and then gets more ill for a few days, but it's really a little different each time. Surely can't plan anything!!!! Lots of hugs and prayers, Donelle Caregiver to Glenn In a message dated 2/6/2005 6:54:59 PM Eastern Standard Time, lwg_art@... writes: Donelle, As you know and everybody else there are those good days and those bad ones. I find myself a lot more stoic trying to deal with stuff than ever before. Can't get upset, can't get drunk, and hard to think too much. Just have to try and get into a routine that gets us by. Janet a little better. She sleeps a lot and we still battle the dehydration. Still has diarrhea and nausea Hopefully she'll be somewhat okay before we start all over again Tuesday.Janet being ill longer after treatments make it seems like the chemotherapy doesn't have a break between cycles.....ah sorry, rambling again......... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 What a great brother! Good for Ben. I can't complain I have 7 brothers and sisters and they have all been super supportive. The only relative that is distant is Phil's brother but his family has never been what you'd call close since his Mom died of Pancreatic Cancer when Phil was 13 and was 8. Phil's mother's sister calls often (Phil is the 3rd generation with cancer, his Grandma Mom and now him), as does Phil's Dad but has barely acknowledged Phil is sick. Arrrrgh! I guess in some way I can understand but it aggravates me. But you can't change people can you? Well there's my Rambling LOL Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 " trying to make a living and doing the best I can...and when it's time to leave I hope you'll understand....that I was born a ramblin man " . love that song! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 In a message dated 2/6/2005 7:50:12 PM Eastern Standard Time, msheila7@... writes: " trying to make a living and doing the best I can...and when it's time to leave I hope you'll understand....that I was born a ramblin man " . love that song! Go Sheila!!! We must be the only ones not watching Super Bowl...LOL I watch the opening ceremonies (cried) and half time....and commercials if I can catch them. Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Just got back from walk....could tell who was watching the game by the shouts coming from the apartments! hehe...must be good game! Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 In a message dated 2/6/2005 8:00:43 PM Eastern Standard Time, jasonsmom285@... writes: Donelle, I'm here reading emails and messing around, the game is on right behind me, husband asleep on the couch. I'm just enjoying listening to you guys singing and keeping your spirits up and rambling on, lol. ~~Dianna Hi Dianna!!! Hope you are having a great day!!! If not, start " rambling " with us. LOL Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 In a message dated 2/6/2005 8:16:56 PM Eastern Standard Time, jasonsmom285@... writes: Donelle, I'm here reading emails and messing around, the game is on right behind me, husband asleep on the couch. I'm just enjoying listening to you guys singing and keeping your spirits up and rambling on, lol. ~~Dianna Isn't it funny how they can " watch " the game and sleep at the same time!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Yes Well can't forget my oldest daughter as well who is right there when I need her. My rock!!! I agree if not for you all would be really wandering in the dark. Yes I am feeling better, got out of the house for a bit picked up some stuff we needed. I really needed to get out of the store, everyone still shopping for super bowl munchies, though was emptying out about time I left.... I could have waited until they were all at home and shopped in leisure. LOL Jolene Grandmommyandme@... wrote: > > > In a message dated 2/6/2005 4:00:28 PM Eastern Standard Time, > jehret@... writes: > > I am experiencing that as well. I have one sister, actually two, but one > is pretty much my best friend right now. And one cousin who has been > really attentive, calling and came to visit when they were down here > visiting the daughter. One cousin who as least asks me how I am when she > wants me to check out the urban legend stuff for her - why she doesn't > do it herself I don't know, but easy enough for me to do it. Have > another sister who was upset with me because I didn't tell her about my > cancer right away. When I apologized she sent me her usual " to a good > friend " very large print post card message -- with a will write more > later. They live in their own little world. They can't help themselves. > LOL Jolene > > > > Geez....I'm just totally shocked that this is such a > " syndrome " ...Thank God > we have each other!!! Take care Jolene...feeling any better than this > morning?? > > Lots of hugs and prayers, Donelle > Caregiver to Glenn > > > Colon resection 6/03, open wound for 2 months, chemo for 8 months > Mets to Liver found 4/04, inoperable; one tumor too close to artery > and vein > Chemo infiltration to chest 8/04 with severe side effects including > severe > pain and muscle damage (permanent??), unable to eat, colon shut down, > hospitalization w/morphine 8 days > Fluid build-up and draining on a regular weekly basis > 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions > TRYING TO KICK BUTT with this darn disease!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 Ok... this test is actually BLONDE proof! I promise! Be really honest... write down your answers before you scroll to the next question. Test takes about 5 minutes. Nothing to sell, nothing in it for me. Its all about you! I cannot post it here, but you can go to my website: http://jaydebaca.home.comcast.net/index.html Look for the link: TIBETIAN PERSONALITY TEST GO FOR IT! Also there is a link about what my daily cancer journal looks like. GOOD NIGHT Y'ALL! JAY Re: Re: Rambling.... In a message dated 2/6/2005 8:16:56 PM Eastern Standard Time, jasonsmom285@... writes: Donelle, I'm here reading emails and messing around, the game is on right behind me, husband asleep on the couch. I'm just enjoying listening to you guys singing and keeping your spirits up and rambling on, lol. ~~Dianna Isn't it funny how they can " watch " the game and sleep at the same time!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 I would love to be pleasantly surprised by the results of this tests. Jay... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 I loved the test Jay and found the priorities the most interesting as my first is family which is most important. and then, Dog/love and the colors right on the mark. Karima Re: Re: Rambling.... In a message dated 2/6/2005 8:16:56 PM Eastern Standard Time, jasonsmom285@... writes: Donelle, I'm here reading emails and messing around, the game is on right behind me, husband asleep on the couch. I'm just enjoying listening to you guys singing and keeping your spirits up and rambling on, lol. ~~Dianna Isn't it funny how they can " watch " the game and sleep at the same time!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 And when it's time to leave I hope you'll understand.. I just couldn't get that line Sheila and it was driving me crazy LOL Thanks Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 In a message dated 2/7/2005 1:27:06 P.M. Eastern Standard Time, jayishome@... writes: I GOT THE CLEANEST BUTT IN TOWN! Dang that felt good! Love you guys! For those of you just joining this group, So sorry! But this is the best most diverse family on the net! JAY " Saying " that felt good?? Or having the cleanest butt in town felt good?? LOL Thinking about you Jay....and adding prayers shortly as you show the doc your clean butt!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 You know, sometimes circumstances introduce us to new friends who remain friends forever, no matter what changes. That's what's happened to me with people here (even though I don't post often) and it's for sure happened in my support group. If some of you have never looked for or found a support group, I'll tell you it's one of the best things I did for myself after my diagnosis. Ours is a mixed group, not strictly colon cancer, but some are colon, a very young woman with lymphoma, several with breast cancer, brain cancer, you name it. Support groups are for survivors as well as caregivers, and it really does make a difference. Consider finding one convenient for you to attend and then just go. You might just be surprised at how good it can be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 Well guys... Went to the hospital today... nervous as heck. And at the last minute, Dr. Mozia had to rush off to the OR for an emergency. Now, I have to stay on liquids for another 12 hours... First thing in the morning... back to square one! I will let you in on the results... Clear liquids... I wonder if that means white wine??? Thanks for all of the TOASTS! Tonight I have my support group at St. hospital... JAY Re: Rambling.... You know, sometimes circumstances introduce us to new friends who remain friends forever, no matter what changes. That's what's happened to me with people here (even though I don't post often) and it's for sure happened in my support group. If some of you have never looked for or found a support group, I'll tell you it's one of the best things I did for myself after my diagnosis. Ours is a mixed group, not strictly colon cancer, but some are colon, a very young woman with lymphoma, several with breast cancer, brain cancer, you name it. Support groups are for survivors as well as caregivers, and it really does make a difference. Consider finding one convenient for you to attend and then just go. You might just be surprised at how good it can be. Quote Link to comment Share on other sites More sharing options...
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