New Want To Play A Word Game
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@2TA, thank you for your kind words, but right now, I am ugly. I never was a ravishing beauty to start off with and taxol took away much of what looks I had. IMO only a very few women look even halfway normal without hair, and I'm not one of them. I hate when I go to the main BCO site and see the "CureDiva" photo of the bald woman with the feather headband. Personally, I wouldn't be caught dead out in public with my baldness exposed. I always wear something to cover my head when I go out. Mark Twain said something along the lines of "faith is believing what you know ai'n't so", and for me to think I'm not ugly right now would be "Mark Twain faith". I don't say that to fish for comfort—it's my way of rejecting the "keep a positive attitude" idea that is so often pushed on cancer patients. I told my family and other people when I was first diagnosed that I don't believe in "positive thinking" and I wasn't going to sugar-coat anything. I feel that trying to convince myself of something that is proven to be false by one glance in a mirror is just a waste of effort, and I have more important things to use my mental energy on.
I hope my baldness is only temporary, but I don't know that. At stage IV and with 3 failed treatments behind me, I suspect my oncs are going to want me to stay on Doxil as long as it works, and I don't know that I'm going to argue with them a whole lot about it. When I started the taxol they said I could possibly go to a less toxic treatment if it worked, but having had another one fail since then, I'd almost be afraid to try it, unless the Doxil shrinks my mets so much that I feel like I have a little maneuvering room, or the side effects become unbearable. The upshot of all that is maybe my baldness is temporary and maybe it isn't. I had my first infusion of Doxil yesterday and so far, so good. The only new SE I notice is some minor body aches. Took some ibuprofen about half an hour ago and it seems to be kicking in, so time to sign off and make breakfast.
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Curve, I love your total honesty, and I was lucky that no one pushed the "keep a positive attitude' on me. My DD1 already had that said to her, and she rejected that idea! I feel sometimes a positive attitude makes me feel better, but not sure whether or not it does much for healing. IT sucks how affected we are by those two things on our chest. I feel lucky as I only had to have them taken off, did not need any other tx. And I love the freedom of not wearing a bra, and that my "recon" boobs do not sag. OH, my DD1 received that head wrap from the place I posted the link on, earlier. It is BEAUTIFUL and they send it free, and they are made with love. I would love for you to have one, but I would need your info.....so maybe a close friend or relative could request it for you? Might even be able to request it yourself! Hope you feel better today! I took a hydrocodone for my back today but it is making me a bit woozy....this script is a bit higher dose than my old one. Think if I take another later, it will have to be half of one.
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So far people haven't pushed "positive attitude" at me, either. The topic of attitude & cancer came up on another forum I sometimes hang out on, but not aimed at me directly. My response in a nutshell was that I don't believe attitude makes any difference at all to the outcome of treatment. If a treatment is going to work, it'll work, and if it isn't going to work, it won't, regardless of what attitude I have about it. I try to stay out of the emotional black hole of despondency because it's a miserable place to be, not because I think a negative attitude will stop my treatment from working. I don't believe a positive attitude will make my life longer, but it can make it better. It is weird how different things about treatment bother different people. I had one breast off and intended to do a flap reconstruction. That plan went out the window with my mets dx, and I don't bother with a prosthesis. I have been asked by more than one health care worker whether I had surgery! I can laugh about my boobs being so small that nobody notices one of them is gone, but somehow hair is different. I don't think I will ever see a funny side to being bald.
About the scarf, I think I can ask for it for myself but I am not sure how to tie it or what styles would look good on me,so I haven't sent a request yet. There is an American Cancer Society hat & wig store in between here and Seattle. I had planned to make an appointment to stop there and get some style suggestions the day I picked up my mom from the airport, but I was so wiped out that I never scheduled a time. I'm still kind of scared to plan anything until after the second Zometa infusion because I don't know how much it will affect me. I hope what I had was a bug, not SE, and that the next treatment goes without a hitch.
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Curve, isn't there a online sight for head scarf tying styles? I did the Look Better, Feel Great program thru ACS, it was a new experience being gently pampered. I remember I would ditch the form to be a uni-boob as often as possible, always left like a weight on my chest. Hoping you just had abug too.
Wahine, thanks for the mental picture of your talented toes! Am curious about the head wrap you're talking about, I have a good friend completing chemo but hair growth has been slow, can you provide more info? Way to go on your diet, I can never stick with one, forgetting which one it was.
Don't know why, it's such a b*tch that I keep removing this from My Favs, so
gayseasy to do on the iPad.Edited: BIG oops, I thought I had typed EASY, didn't catch the auto-correct. So embarrassed, hope it didn't offend anyone (especially those lurking)
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LOL @ Maddy.....I think autocorrect or whatever its called got you....I know you didn't mean to write "so gays to do on the iPad"....lol. The head scarf/wrap site is www.http://goodwishesscarves.org/. I did have to provide her chemo drs name, I guess so they don't get bogus requests. But they sent it out so quickly, and with a little note attached. Really sweet. I ordered the blue pattern and its lovely.I really liked the pink/orange one too, but my DD likes blue, and wears that color a lot.
And Curve, you don't have to tie or wrap it, it is made that way, so it looks good just as they send it. You could wear it without a hitch. (Had to get a next word in here somehow!).
This is the one she received....
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OOPS I posted too quick and was just looking at Maddy's word of ditch ....didn't notice you had already used hitch, Curve! OK, from ditch.... well a child could prolly think of a word quicker than I could! (But I did it!)
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oh, no, didn't catch my huge faux-pas! My brain, who know, maybe it's been affected by all the people I've encountered with their colds
Wahine, thanks for the info about the head wrap, need to check it out
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Oh Maddy, Maddy, Maddy.....you must be having a hard day today!!! You are usually so on top of things. But now you changed 2 letters (oops, slapping your hand!!! LOL, just kidding), so I will go with your word anyway. We needed a change-up, so I am glad you did that!!! Sorry, didn't mean to scold you!!! (And yeah, I just changed the order of the letters, but we decided awhile ago that we could do that...so I will let someone else come up with a better word!!!). Have a good evening, girls!
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@2TA, there are tons of online sites and you-tubes that show how to tie a head wrap. I have a long narrow face, and what I want to ask at the ACS store is which styles would look good on me. I talked to someone about the Look Good Feel Better program, and they have classes near here, but I think the classes are mostly about makeup, which I almost never wear and don't plan to start now. That person suggested going to the store to get style advice. Unfortunately, since the beginning of the year I haven't felt well enough to do it. But I'm feeling a little stronger bit by bit. Maybe I just had a very bad bug.
They have wigs at the store too, but I'm not even thinking about getting one of those. The wigs are all straight, wavy or curly fine hair, and look nothing at all like my own coarse & kinky locks. I bet each of my hairs (when I had them) were twice or three times the diameter of the hairs in those wigs. Not to mention they're the wrong color. My hair was getting quite gray in front and on top, but still almost completely dark in back. The wigs are all either uniformly dark or uniformly gray. If I'd remembered this thread before I threw all my hair in the trash instead of after, I'd have kept some of my own to make a halo, but by the time I thought of it, or saw it on Active Threads (I forget which) it was too late, I had thrown away all but one little piece from the front and one from the back. I don't know why I kept those, they are too small to do anything with. Oh well, it's no use crying over spilt milk.
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oh, ditzy me, didn't catch I changed 2 letters! Thanks for the gentle scolding, but at least I was close. My mind hasn't been focused.
Curve, I know the feeling about the wigs, they just didn't look like me either. My hair was very fine, little of it and very straight. The wigs were nothing like me, but it just saw it as a chance to pretend I was someone else. I never had your thick hair. My favorite place to look for head coverings was:
http://www.tlcdirect.org/default.aspx?crcat=brandi...
Plus lots of bandanas.
Wahine, did I do better this time?
Other than Red (we know what she's doing), where are our other ladies? CC?
Have a great evening ladies
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Oh yes Maddy, you did GREAT!!! Hope you knew I was scolding you in fun......if I came across as rude, I would feel like such a loser. Shoot, at least you HAVE a mind, whether or not its focused. I keep feeling like I have lost mine....lol.
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Hello, ladies! I'm baaaaack! We had a lovely time together and although they said my DH could stay the extra days, he chose to come home with me. He flew in Tuesday night and I was so antsy about it, I kept checking the CLOCK and asking at the front desk for info on his flight. Finally, they said okay, his plane has landed, go get him. So I jumped in a taxi and arrived just as he came out the doors of the airport.
We walked a lot, climbed a huge tower and got caught in a brutal rainstorm at the top. I was nervous because the stairs were a smooth tile that was now soaked, but a third of the way down we saw a wee door and tried it. Unlocked!!!! So we waited the storm out in dey comfort.
I took archery lessons while waiting for him, and made friends with everyone under 13 on the resort. One little girl asked her dad if they could take me home with them. Lol
The flight home had terrible cross winds on landing, but was otherwise ok. The drive from the airport sucked cuz of the snow storm. And the fact that I wasn't driving. No control issues in my family, no sirree!
Anyway, we are now home safe and sound and I have a bunch of postings to catch up on.
Lubs to all of you fine ladies!
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Oh well heck, I finally get a post off and get bumped by both Maddy and Kath. I'm gonna post this and CLOSE now.
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Red, yahoo! Home again and with DH! He loves you so much he didn't want to stay without you. You have plenty of time to fill us in, enjoy your post-vacay time with DH!
Wahine, not to worry! This is just a game! It was an easy mistake, brain fart, as long as I didn't write something mean or just plain rude. Sometimes the ways we have to twist sentences or adjust thoughts to play this game!
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So I'm back to work today and boy did they work me like a SLAVE.
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OK thank goodness. I was trapped in some weird bold italics capitals world. So I got out and came back again.
How you doing Maddy? Haven't talked in over a week. Are you feeling any better? Those were good suggestions you made to Curve about the head coverings.
Curve, glad you're feeling a bit better. I don't think the same way as a lot of people, I think. I see myself in the mirror now and I think yes, I've gotten older. Bags under my eyes, silly jowels, deep lines from nose to mouth. But they're kind of like badges of courage and fortitude. On the other hand, sometimes I'm saying, omg who is that? Lol. I got the heads up from my daughter who said, Mom, if you have to have chemo, got to a hairdresser and get her to cut it off first, then get them to make a wig or a hat/wig thing with your own hair. I think I'm going to go that route, especially after reading what you and Maddy said about being uncomfortable with store bought wigs.
CC, girl, where are you honey? Are you okay? Hope you pop in to say hi soon.
Kath, how's Kristen doing today. I know yesterday was tough for her. I'm keeping her in my prayers. And I hope dd2 gets over her cold soon. And I hope your back gets better. Dear lord you have a lot on your plate right now - weren't you gonna get us all small plates so they wouldn't hold as much?
Well, have a nice evening ladies.
Muah
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Yes CC, it was slave, I can't seem to do bold on my cell, so I'm using caps. As for being valued, I guess I am. My boss even hired me a temp so that if I have a bad day, I can just call in and the work will continue. I love the peace of mind that gives me.
While in Cuba, I walked into a glass topped coffee table. And I was dead sober too so it really irks me. I was trying to see if the bank was open and cut my shin open on the table. It was ok though, I poured some rum on it, to disinfect it you know, put a little SALVE on it and a bandaid - voila! Good as new.
Thanks for the welcome back CC.
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Red, glad the table didn't break, so you weren't walking on glass too. You would have needed a glove to pick up the shards.
CC, good to see you back!
Wahine and Curve, how are you both doing today?
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@2TA, getting a little stronger every day, but I haven't yet made up all the ground I lost by any means. I tried to walk to the library today but didn't feel like I'd be able to make it all the way there and back (which is nearly a two mile round trip), so I went back home and drove. By the time I got back, my legs were so wobbly you'd think I had walked
all the way around the globe, not just down to the corner and back. But still, I walked for half a mile, which is the most exercise of any kind that I have done all month.0 -
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everyone, take it easy today. Bad weather, overdoing, not good. Don't want to fall, hurt knee, back or an elbow is just not good
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Hi girls! Seems like I missed so much. Glad you are back at work Red, and there is someone who can fill in for you, when needed. Sounds like a good plan! And, Curve, good for you with that walking...I am still on this diet. If I hadn't started it, I would more resemble a whale, lol.
OUCH Red, don' t tell me we are twins! Sounds like something I would do, and a glass table IS hard to see. When we were on a trip recently, and omg I can't remember where, but my DH had pointed something out in a store (I think we were in a mall) just as I had passed it. SO I turned around, and started walking into the shoppe to see what he wanted me to see, BUT....I walked right into a glass wall instead! OMG it hurt so much, I can't remember if it was a glass wall next to the glass door or what. But I was so embarrased (the salesgirls inside, saw me), that I just turned and walked away. Tried to cover up how much my head hurt, after that!!! lol
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@ wahine, if you and Red are twins then I must be your lost triplet, because I do something like that every once in a while, too. However, I am not an identical twin because my nemesis is not glass but posts and door frames. I remember once I forgot something in my seat on the bus, turned back to get it and almost knocked myself out on one of the vertical posts for standing passengers to hold onto. And last summer I whacked my head on the frame of the garage door while I was still staying with my mom, and it didn't stop hurting for days. Probably gave myself a mild concussion that time.
So far I haven't hit my head on anything at my own housie. Maybe that is a good sign.
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OMG Curve! ouch! Yeah, I have been known to run into door frames and the like, also. I think in my case I am always doing things in a hurry and don't want to take my time, then *boom*. Well, I heard about my MRI, and now I can add 3 bulging disks to my degenerative disks and deteriorating spine. Sheesh! Will see the spine dr in about a month, and the osteoporosis dr sometime next month too, I hope. They are all so darn busy. And I am sure it wouldn't help it, for me to whine about it. On the plus side, it wasn't cancer. I wonder if that hard fall I had on my back on the treadmill deck, could have caused those disks to bulge? Sure was a hard fall.
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@wahine, it wouldn't surprise me at all if your treadmill tumble caused the bulging disks. Those are no fun! I had one years ago, but got it by picking up something way too heavy for me. That's the old injury I think I tweaked in the car crash last month, but it is a lot better now. You are right, whining doesn't help, but physical therapy might. In the meantime, I hope you can get good pain control. But stay away from wines and spirits if you are taking strong pain meds. It's not safe to mix the two, as I'm sure you know.
How is DD tolerating her tx so far?
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Oh Curve, I wish I COULD have some wine right now! Have only taken half the hydrocodone, but haven't had any today....I think I need to as the pain is worse now. But this new "eating plan" I am on does not allow any wine/beer/alcohol this week. Can't even swipe any from our bar area....it would weigh heavy on my conscience (and the scale, lol).
My DD is not doing well...she was so depressed the past few days, and the pain is getting to her, plus the loss of some function. So hard. Thank you for asking about her. My DH has an emerg EGD in the morning....couldn't be sooner as he was on strong blood thinners. So I will be at the hospital half the day tomorrow with him. He has had Barretts for awhile, so this is scary as he has been having a lot of problems. Will try to get the g'kids later tomorrow so they can spend the night, as I will be at the hospital all day Thurs with my DD for her chemo and rads, and don't want my DH to have to go to their house by 8am. Easier to have the kids here (I think).
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@wahine, can your DD see a palliative care doctor to help her deal with the SE from her treatment? That is what they specialize in, getting control of the side effects and symptoms. Maybe some pain is inevitable, but a palliative care specialist should be able to help minimize it. I hope you & she can find some help to get the pain down to a bearable level. Just being in less pain will probably help relieve depression, but if not that is something I think the palliative care doctor could also help with, including prescribing an anti-depressant if appropriate. I really think sometimes our oncologists are so focused on treating the cancer that they don't recognize how debilitating the side effects of treatment can be, both physically & psychologically. In the meantime I hope your DH's procedure goes well tomorrow. (I had to look up EGD and Barrett's in wikipedia to know what they are.) And that everyone involved in your care for your back injury, your DH's test and your DD's treatment will be totally coordinated, communicate clearly with each other and never get their wires crossed. I get my treatment through Group Health Cooperative, which is sort of like an HMO, and one good thing about it is that all my records are in the same system and all the doctors treating me have access to them. That way the left hand always knows (or at least can find out) what the right hand is doing. I still remember my younger brother calling his various doctors' offices on the phone during his last trip out west, making sure that Doctor #2 got the results from the test ordered by Doctor #1 before his appointment.
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Ok, I can't keep up! Before I get the chance to write something, you are all well beyond me.
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