jaminkw Posted March 31, 2011 Share Posted March 31, 2011 This looks like as good a place as any the post this since I'm not sure exactly what it's all about. Had a restless night last night. When I was up for the 3rd time around 4 am, I took and Ativan. Still had trouble falling back to sleep but slept til 7. I'm worried about myself and my friends who are in that 3-5 year range in our cancer journeys. Several of us are facing new issues and it is really scary. Ned most of all. He's a permanent fixture here for me. And if I couldn't find him here, I could go over to CancerGrace where he has another huge group of followers who love him. I'm afraid we and his family are going to lose him. I made a decision to not go on taxotere when my scan in mid-March showed my thickening doubled and the fluid increased. I second-guess myself every day. I could pick up the phone and change it but I don't. I'm scheduled to scan again and start taxotere the first week in May. It doesn't help me trust my decision when every day I experience some degrees of intestinal distress. I'm not doubled over in localized pain. I just feel off, or have a sour stomach and/or have moving areas of discomfort and sometimes pain that feels like gas--alll day long! It's a response to every single thing I eat. My stomach is very distended. I can't zipper or button clothes I've worn recently but don't seem to have gained weight. I eat next to nothing but don't lose weight either. I have decided to stop the Tarceva two weeks before going on taxotere. Now I'm asking myself why I am still taking it since it could be what's aggravating my stomach. But then, you know, they say it could be slowing it down. Don't know if I have the guts to go off it sooner. Adenocarcinoma is characterized as slow-growing. My thickenings have been described as slow-growing--but doubling in 3 mos, is that slow? And a measurement of 3.something in a scale of 1-7.5 I saw online, is that bad already? Well, I am just a mess. Thanks for letting me letting it out. Judy in KW Quote Link to comment Share on other sites More sharing options...
Kasey Posted March 31, 2011 Share Posted March 31, 2011 Ah Judy ~ we should have been chatting at 4:00 this morning. I was up 4 times last night. I've been struggling with sleep for quite some time now. Some nights I don't sleep at all. Ativan has stopped working so I just am tired all the time lately. I do not, however, have the intestinal distress you are experiencing, or the worry of second guessing my decisions. I find your strength and attitude quite remarkable, you know. I've no advice to help you with decision-making. I just hope you know that there are manyof us out here who would change things for you by our sheer will if only we could. I believe you are being treated at a wonderful place and guess they know what they are doing. I do understand, however, how weary you must be being on treatment all this time. I hope when May comes it brings some peace of mind that decisions made are the right ones. Wish I could make you feel better. Kasey Quote Link to comment Share on other sites More sharing options...
Annette Posted March 31, 2011 Share Posted March 31, 2011 As always Judy you are in my thoughts. I wish i could come up with some bright idea to help with your stomach issues. Right now I am experiencing "anxiety" issues that make it feel like I have an elephant on my chest and it is upsetting my "tummy" too - (not even scan related). I will offer one suggestion that actually helped me before the major worries started - problem is that I have no idea if you could take it while on chemo so you would have to ask that question. I had stomach issues the last 2 years - like the whole area right below my rib cage - I had an upper gi done and it was not in my stomach - but he said it might be that irritable bowel syndrome. Which makes sense - because of the stress we go thru even when we don't feel "stress" so to speak. He gave me a prescription for DICYCLOMINE (generic for BENTYL) and I can honestly say that when I take it as directed I can go for several days without a lot of pain - considering it hurt almost everyday since my surgery in Aug of 2009 - now it really only hurts when I don't take it or I'm really really stressed. (You never know what will work!) I feel like all of us have been put thru the ringer - it's hard to believe how much you start to care for your virtual friends - everyone here is pretty much family - and I would give anything to help you through this pain - as would everyone here. I know you are rushing around - but take care of that lady in the mirror she's needed here! Annette Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 31, 2011 Author Share Posted March 31, 2011 I feel like all of us have been put thru the ringer - it's hard to believe how much you start to care for your virtual friends - everyone here is pretty much family - and I would give anything to help you through this pain - as would everyone here. Isn't that the truth of how we all feel about each other. Said, it once, will say it again: don't know what I'd do without you guys. And Annette, I keep going hanging on to happy plans--guess what it is now? Yes, meeting you! Casey, how is your health and Fred's. I have to pm you in case you are missing my random posts. I'm going to be in Kutztown soon. Can't think about making the trip to Lancaster. But if I get hold of the car one day (Stan will be working), is there somewhere we could meet halfway. That's what Gail and I did in NJ. Of course, you would be welcome to come see me if you felt up to it. Judy in KW Quote Link to comment Share on other sites More sharing options...
Joppette Posted March 31, 2011 Share Posted March 31, 2011 Hey Judy, I'm with you on the doubts issue. I feel so bad for you because you've had to take treatment after treatment. While I at least got to go three years, almost four, before they "found something". June 7 will be my four year anniversary. My next scan is April 27. If mine is back, I will pray about my treatment options. A large part of consideration for further treatment will be quality of life. I was miserable on chemo. But I tolerated it because I knew it was essential to lowering my chances for recurrence. Who knows at this point? I understand your doubts, and would be as perplexed as you. I just wish I could take it away from you my friend. MI Judy Quote Link to comment Share on other sites More sharing options...
Muriel Posted March 31, 2011 Share Posted March 31, 2011 Hi Judy, Sorry for both your physical and emotional distress. I understand worrying about recurrence, etc. (basically, worrying about the future). In May I will be an 8 year survivor (remember I was staged at Ib) and I worry about when it will return almost every day. I've had several scares over the years, but it certainly seems possible for a return at any time - so I worry. Connie's passing, at year 15 or 16, made things worse for me. Obviously, I have no advice for you here. Also, I don't know what's it is like to be on chemo almost constantly sinced diagnosed, so take what I have to say with a grain of salt. If I were in your situation, I probably would have started chemo immediately - the day of the Onc. appointment if possible. But, that's just me. You need to decide what your priorities are (quality, length of life, or a balance between the two) and then take a course of action that you believe will best achieve that. No one else can make that decision for you. Best of luck, Muriel Quote Link to comment Share on other sites More sharing options...
eric byrne Posted March 31, 2011 Share Posted March 31, 2011 Good Evening Judy, Bowling to-night,7.45pm leaving shortly for the 8.30pm session,thought I would take a few minutes to read the mail.Oh boy,wish I had more time to gather my thoughts to reply to you,you certainly have a greater call on my emotions than a silly game of bowls but its a team game so trying to square a circle.I am with you in your concern for Ned,especially the silence,half expecting him to suddenly reappear here with some upbeat post,alas no?.I am so sorry for you,I know the constant physcological pressure on all of us,sometimes barely noticable other times a bit more strong,that the cancer is present and about to make a comeback? yes being a LC survivor is not for cissies,but we cannot be a tower of strength 24/7,so accept this moment and believe it will soon pass.I do think about you Judy even at times,in mid work or having breakfast,wishing for you things were otherwise. Goodnight Judy. Quote Link to comment Share on other sites More sharing options...
dianew Posted March 31, 2011 Share Posted March 31, 2011 Judy - am so sorry you are going through this now. I imagine we all second guess our decisions some of the time. After my tx was done, and I started this trial, I worried for a long while that I had made a mistake and should be doing some type of second line chemo instead, especially since I could be getting a placebo. I chose the trial because of quality of life issues. I hated the way the chemo made me feel, and while I still worry, deep down I know I did the right thing for me - and I think you have made the right decisions for you. I think I'm going to put what Eric said on my fridge - yes being a LC survivor is not for cissies,but we cannot be a tower of strength 24/7,so accept this moment and believe it will soon pass. Sending lots of positive thoughts and prayers - Diane Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted April 1, 2011 Share Posted April 1, 2011 After facing challenging treatments as long as you have, doubt and worry are understandable, Judy. And I can't pretend to have good decision making advice for you. But I think you've done a great job of facing up to your doubts and worries, and handling every challenge that's come your way up to this point. I expect you'll make the decisions that are best for you now, too. All I can do is offer my support. I wish that was enough to help more. We all lean on you for support. We're here when you need it, too. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 1, 2011 Author Share Posted April 1, 2011 Thank you all dear friends. Now I will give you an example of my somewhat dubious coping style. I said it outloud, got rewarded with empathy and good wishes from friends, then I start the spin. I've said for a long time I would have made a great spin doctor for a politician or other famous person. Fact is, the talent was pretty effective at time when I was doing therapy. This is how it goes. I've been kinda skating on the easier chemos for a couple of years. Yes, it took almost a year to get the Alimta constipation regulated so I didn't have it or diaherra most of the time. And the eye issue that set in about two weeks past every infusion and lasted til the next was due. Sore, burning sticky eyes, extremely light sensitive. Had to wear sunglasses to watch TV or use the computer. Then Tarceva with diaherra that turned into a dx of diverticulitus (no signs of in latest scan). Constant juggling of how much fiber to take, pretty constant intestinal distress after everything I ate. If I didn't lotion and potion regularly, skin like a lizard and painful cracking heels. Still the cancer marches on. Get the picture? So I'll go on taxotere. It's awful. Constipation a major issue, but look at all that experience I had with Alimta. It will be easy. Lose my hair. Can live with it again. Hope to use Vit E oil to help prevent eyebrows and eyelashes loss. I hate that more. Worse comes to worse, I'll go have some little lashes put on. You know you can do that lol? Now for the feeling rotten and miserable part, if I remember correctly from the "big chemos," the worst of that lasts about a week. I have zofran now and when that fails, Publix bread toasted is great for temporary nausea relief. I'll come home lay on the couch, eat whatever and whenever I want and watch TV and read. Then, two good weeks before the next infusion. Do I have it figured out or what? LOL Almost forgot, and the taxotere will kick the cancer's #ss. Again, thanks so much for your support. It means a lot. Judy in KW Quote Link to comment Share on other sites More sharing options...
Annette Posted April 1, 2011 Share Posted April 1, 2011 Great great plan - - most important part kicking cancer's butt, second would be lounging on the coach and taking care of you - remember when Judy (MI) was feeling down we did a stupid tv / movie night - well we may have to watch a lot of it to make sure you are alright - such a small sacrifice - I may start practicing tonight - I believe I will through a mushy romantic comedy in the dvd player and do nothing but snack all night - just for you Judy - I won't benefit at all from it cause it's just for you. Annette Quote Link to comment Share on other sites More sharing options...
Geri Posted April 1, 2011 Share Posted April 1, 2011 Oh Judy, I'm so sorry you're being put through the wringer like this. I don't know why the makers of all these "wonder drugs" can't do anything about the side effects. I take 16 different drugs daily, several of them to counteract the side effects of the drugs that I really need. I guess that's the price we have to pay - some days it's too way expensive and I have a pity party, anytime you want to join me feel free to let me know. I wish I had the solution for your physical problems and could stop you second guessing yourself. Rest assured that you're not alone in that department, I think it's something we all do at times, we wonder whether it's worth all the crap that comes our way........would it be different if we had done something else........... it probably wouldn't. I bought myself a new placque which makes me smile when it all seems overwhelming - "Now put on your big girl panties and deal with it" - hard to do at times but know we're all behind you, understanding and feeling your feelings too. Take care Geri Quote Link to comment Share on other sites More sharing options...
Muriel Posted April 1, 2011 Share Posted April 1, 2011 Judy, I think that's a great decision! I'm so glad that was your decision. I'll be there for the stupid tv and DVDs parties. I hope the zofran is really effective - and don't forget about stale gingerale (add a little sugar to "not-stale" ginger ale). Let us know the date for the first party. Muriel Quote Link to comment Share on other sites More sharing options...
Joppette Posted April 1, 2011 Share Posted April 1, 2011 Judy, It's so nice when we can write stuff out, and it gives us clarity. Your decision is great because it is YOUR decision. I do expect to be invited to the stupid TV and DVD parties too! Now my pajama's are not pretty, pretty much sweat pants and sweat shirt, but oh so comfy. HUGS MI Judy Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 1, 2011 Author Share Posted April 1, 2011 Geri, so good to see you! Kind of you to think of me; you've been through a bunch of wringers yourself. Hope you are feeling tolerably well but 16 meds a day, oh my. What do we always say, we do what we gotta do. Annette, you rarely fail to make me smile if not to LOL. I'll start practicing for the stupid tv/movie night tonight but doubt I'll last past 9 pm. It's been a rough day but I figure it's the least I can do since you're going to all that trouble to practice with no benefit to you--wink wink. Hey, tell me we're stll on for late April, early May. I can hardly wait. Muriel, thanks for the good wishes and the reminder of the ginger ale. I have a bunch here but would have left without any if you hadn't mentioned it. Judy, the worst years of my life I kept journals. That was o.k. but I like writing and having people respond a lot better. Don't worry about what to wear. There will be no pj judging. Judy in KW Quote Link to comment Share on other sites More sharing options...
Annette Posted April 1, 2011 Share Posted April 1, 2011 Judy - we are absolutely on for any day / time you are near. I am excited to meet you as well! I was very glad to read the part about not judging the PJs - because I was a little worried about what exactly Geri meant by "big girl panties" and I could only picture them being too big for me and falling off and I was thinking I sure am glad that I have not been exercising maybe all those extra pounds are there to make sure they will stay on. Which makes me think of a scene in "The Ugly Truth".... it didn't beat my favorite all time When Harry Met Sally scene but it was cute - anybody seen it? I'm thinking we could all use a couple of laughs and maybe a cup of cheer too - Eric is out there partying why can't we? Annette Quote Link to comment Share on other sites More sharing options...
Muriel Posted April 1, 2011 Share Posted April 1, 2011 Haven't seen the Ugly Truth. If I don't like it, I'll just have extra "cheer." Count me in for that. Muriel Quote Link to comment Share on other sites More sharing options...
shineladysue Posted April 3, 2011 Share Posted April 3, 2011 (((Judy))), Like so many others here, I wish I could just wave a magic wand and make all your fears go away and the cancer with it.. *sigh*.. I am so glad to see you sharing your current situation, thoughts and concerns with us. Judy, you are in my prayers daily and I will most certainly be praying that the latest plan works out to be the best plan yet. As for second guessing yourself, I think you have to trust your own instinct to tell you what is best for you and let us be here to hold you up as you go through the days ahead. We love you, don't forget that. Take care of "that lady in the mirror", as Annette has said, because we surely want and need you here. Love, Sue Quote Link to comment Share on other sites More sharing options...
chloesmom Posted April 8, 2011 Share Posted April 8, 2011 Hi Judy, I think anxiety and doubt and being put through the wringer numerous times are par for the course with this disease. I hate that you are going through tough times and I certainly understand, as does anybody who has waslked this path as we have. Please know that I am always thinking of you. Cindy Quote Link to comment Share on other sites More sharing options...
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