jcawork Posted January 6, 2005 Posted January 6, 2005 Met w/ Onco yesterday and he said lets scan again its been 2 months. I am of course dreading the wait for results. I can't imagine it gets easier-the wait. My cough is so bad (they say from radiation) I have myself convinced its back again etc.... I have done 2 of the 6 CPT-11 (the extra boost doses) and I am loosing steam. I told him that I was loosing steam and I just don't want to do this anymore (7 months). He didn't seem to moved by this I guess he hears it a lot. I still have PCi to do. I just want it to be over, I want it to be better, I want it to never have happened. I am tired and I am fed up. I am sick of trying to have a good attitute. The right attitude. I am also so freaked out when I read the board and people are getting worse. Its horrible, it may also be my fate and I am scared. I know there are some people who are getting better, but the ones who are not really jump off the page. Not only does my heart sink for them and their families, but I feel like I am waiting for the inevitable. Sorry to go on and on. In all these months I had few breakdowns, but I have just had enough of all of this. I want my life back, my hair back-long, my body back. I want a tan, to garden, to look healthy. To feel like my old self. I hear that will never happen again. Will post my results w/ I get them. Jen Quote
Cindy RN Posted January 6, 2005 Posted January 6, 2005 Jen- I hate hearing how this is effecting you. I also do not like waiting for results. You would think they could tell you after the test is done! Sometimes I think they make us wait to see the Dr so they get paid for another office visit! I too, want to be able to tan and get out in the yard and work! NOPE! I have had to find new things to occupy my time. Scrapbooking is one thing I have found, I love it. It also is a way of preserving all those memories for my family. You WILL get thru this. You are a strong women and will find a way! I have misplaced your number, call if you want. Love Cindy Quote
daggiesmom Posted January 6, 2005 Posted January 6, 2005 Jen, ((())) Waiting is the pits. I'm just trying to think of something you can do to occupy your mind between now and Monday. Maybe, if you feel well enough, have a few friends over for a movie night, make popcorn and make it mandatory that the movie should be funny! You could make a promise to yourself to watch one funny movie every day between now and then. Personally, I think laughter can help lift your mood. Maybe take some time and draw out your garden plans for the spring, since you like gardening, that would be gardening on paper. If you feel well enough spend some time going out to eat, or shopping for a new outfit. There are some good board games also that would distract you - Othello or Taboo are two that make you think. My hope is that your NED will continue and your scan will show improvement. I'm praying for you. This battle can be won, and I don't see any reason why YOU can't be a winner. Joanie Quote
DebsSky Posted January 6, 2005 Posted January 6, 2005 Jen: I hear ya!! Myself, I cannot empathize, but my mother was feeling the same way that you are. She was really depressed and I was getting worried. What we did was drive her out to the coast to visit my grandparents for about a week. She got back yesterday and it did her a world of good. I guess it made her feel her life was somewhat back to normal being able to visit and putter around with the family. She came back re-energized and ready to get on with the next phase of her treatment. She also came back planning for the future and looking forward to everything. I know this rambling doesn't help you, but maybe it might be something to think about. If you have the opportunity to take a cancer break, it just might be the ticket. If you need a shoulder, please feel free to use mine. I don't mind at all!! Your in my prayers, Deb Quote
Addie Posted January 6, 2005 Posted January 6, 2005 Ah, Jen..... The first thing I'm going to say, is having to wait 10 days for results is ludicrous! I just had my scan on Monday and I called in to my onc's office yesterday. He returned the call when he could to give me the results. Didn't even have to make an appointment this time...as I go see him again in two months, and will be rescanned in three. (And BTW, the scan looked - in the onc's own word - "gorgeous"! Whew!) I cannot imagine having to wait ten days....because I know this time, the angst ate at me more. The further out from tx....the easier it is to worry that it's gonna return....at least for the first two years, I think. After that, I hope test time becomes easier. You've had a long haul...longer than most. And I know this cough has been really tough on you. This IS your body. You've already gotten two doses of chemo beyond the standard treatment. You still need PCI. I'd sit down with your onc again and MAKE him listen. If you've really had enough of the chemo...SAY IT LOUD until he hears you. It IS your choice. Then get on with the PCI. I have to tell you, I don't feel as good these days as I did during the last couple cycles of chemo and just afterwards. I dunno if it's just the cumulative result of all the tx...some residual effect.....or if maybe the add'l steroids I got during tx kept me more energized....I really dunno. I just know I wear out quicker these days and it's harder to stay upbeat...but I keep working at it. I went thru a time of two of the weepies, bemoaning MY lost life too...and my lost headwarmer.....ie: my hair! But this is my new reality...and I try not to get too bogged down in what I don't have or cannot enjoy in the same way as I could, pre-cancer! I'm always mindful that it could be worse....but I keep aiming for and hoping for better than that and try to enjoy whatever good news I get! I have some female surgery coming up soon...and a nasty infection I can't kick (probably again, thanks to residual effects of tx) and they'll cancel my surgery unless I do. We've decided NOT to move to Arizona after all because I'm not secure enough yet to have all new doctors....so we're a bit strapped until we can finish and sell the house out there! Christmas this year was sort of a bust...and my family seems to feel that since I'm NED....everything is back to normal. Or should be! They don't seem to want to acknowledge, let alone talk about the fact that I still have a little fear in me. This ain't easy stuff, Jen. None of it. It is and always has been hard to come here when there seems to be many setbacks...or losses. It's still the rare week that passes that I don't think of Mo Sugar....who was one of the first around here to respond to me and who was such a lovely person. Her loss hit me hard...and it reverberates and has been repeated by others here who were also lovely people and are now gone. Cancer sucks. But we go with the hand we're dealt. Find someone to spout to if this is getting too burdensome...and tell your onc you're all done with chemo, if that's how you sincerely feel! You have that right...and he'll have to honor your decision. I'm sorry, hon. Wish I could make it better for you...but it's a good thing to tell it like you feel it sometimes. Cripes, I changed the course of our lives here by speaking my truth and saying I wasn't ready to leave my medical team. My poor hubby had already sold the dang snowblower! He had to go back out and buy another one!~ We got 5" last night and we're stuck here in the snow belt for at least another winter after this, if not more! Take charge...in whatever way you can....and hang in. Get PCI on the schedule...as that is something beneficial and it wasn't that bad. I still know who I am when I look in the mirror....even if it's some chubby, bald lady with no eyebrows looking back at me. Hassle your onc for getting the results sooner. It can't possibly take 10 days for him to get the report or see the films. Call after a couple of days and bug them till you get the results. That's your right too! Thinking of you...and hoping it helps to get some of this out! Quote
SDianneB Posted January 6, 2005 Posted January 6, 2005 Jen, I go for scans at 8:00 or so in the morning, and then (on the same day) from there to the Oncologist's office where they have the report in my chart before I get there. Now, I tell them when I come in that I want a copy of it on CD, and they have that waiting on me when I leave. I think I've strafed (verbally!) those people enough that they finally get it now!! I hear you too -- I have no idea why I have a good attitude most of the time, other than just to say that I will it to be that way. Why? Because I do NOT like the alternatives. I'm pretty hard headed (probably why my hair hasn't all fallen out -- I think I have a thin layer of concrete under my scalp hanging onto it!) and once I made the commitment to have treatment, I never looked back. Just like you and Addie and many others, it takes some getting used to to realize I won't ever be *the same*. Not ever. I want this to be one of those "well, we've treated and cured your nasty little disease, and you don't have to worry about it any more" things, but it isn't. It isn't going to be that way no matter how much I want it to be. Consider something else too. I have a sister who had a heart attack a little over 2 years ago. She was very fortunate to have been where she could get immediate treatment, and only had to have stent placement rather than open heart surgery. She had minimal heart damage, but still has heart disease that she will have the rest of her life. I worry that my cancer will come back and that I'll have to go through months of chemo/radiation again, and feel worse the next time around, and what if, and what if, and ... But she has the same thing -- what if she has another heart attack, and isn't so fortunate the next time? She has fears just like we do, for a different disease, but just as real. I watched a friend die over a 2 year period in the 80s from ALS, at age 45. It was horrifying. But as long as she could be, she was still my friend Bobbie, and her personality shone through. I will never forget her, and she's been my inspiration more than once through my own ordeal. You'll find your own inspiration somewhere, sometime. It won't be the same as mine or anyone else's -- it will be your own. Hang in there. Di Quote
Don Wood Posted January 6, 2005 Posted January 6, 2005 Unfortunately, we can't go back to that life we had before. But we can make a new life that is good for us. That is what Lucie and I have had to do. We no longer dwell on the nostalgia life, but work at the one we're dealt. I think we are better persons for it. Good luck. Don Quote
jcawork Posted January 7, 2005 Author Posted January 7, 2005 I dont have to wait 10 days for my results. Sorry if it sounded like that. I get scanned Monday and get the results Wed-next week. Thanks for the encouragement as it helped a lot. Yes, I am just sick of coughing and feeling so darn yucky. I am anemic again (been a while since my counts were down) and I think it has me down if thats possible. Thanks again, will post next wed w/ I hav results. Jen Quote
Addie Posted January 7, 2005 Posted January 7, 2005 Thanks for clearing up the scan issue. I read it wrong I guess...but couldn't believe a 10 day wait! There must be something to the notion of anemia causing one to feel down emotionally. Mouse was commenting on the same thing. It's not the only reason for being sorta depressed....that's for damn sure....but I know I've not had as much energy lately and it DOES sorta make me feel "uh" emotionally too! Not weepy.....just....."uh". Blah. Poopy. Yucky. Leave me alone. You know what I'm saying, right? Cuz you FEEL that way!! I'd say it's back to the drawing board on what you might do for that cough. There has to be SOMETHING that helps, Jen. I can't imagine trying to sleep with a nagging cough. Bad enough I get night sweats and flashes. Worse, my female dog sneaks up on the bed in the middle of the night and while there is PLENTY of room for her in the middle....she has to sleep RIGHT ON MY HIP....snuggled up to me like a log cabin built right against the foothills.....ya know? If I was coughing too, I'd NEVER get a decent night's sleep! Will look forward to a good report from you next Wednesday. In the meantime, if nothing else works to sort of boost your mood...might I recommend you up your daily "dosage" of chardonnay a half glass or so? Quote
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