March 2009 Rads Group?
Comments
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Sorry for the split. I seem to hit the wrong key and delete everything.
I suppose only those that suffer from depression will understand why I'm concerned but I would rather have chemo than go through depression.
I also found out that 10% of people don't tolerate Tamoxifen, meaning your body doesn't respond to it. There is a test I can take but insurance doesn't cover it.
Just venting.
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I have not posted for awhile, but it was nice to read everyones posts. I have been tired and very busy. My husband needed a part for his truck that was on back order form Ford until June, so we had to go to a salvage yard to get a used part. My daughter is making her first communion this Sat, so I have been busy preparing for that. I am so glad that I am finished with Rads. I am very happy that I had a great experience at my treatment center. I feel very bad for you Rachel, I can not believe that people can be so mean. Good that you stood up for yourself.
Renee I have been taking tamoxifen during my rads. I had some se's so my dr prescribed Effexor. You can also take Celexa and Lexapro. Good luck.
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Prozac is a CYP2D6 inhibitor, as is Paxil, Wellbutrin and Cardioquin.
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Renee you make an great point- the people who can dump this toxic (sorry to use that word ) negativity can be well meaning or at least think they are well meaning people. Drat, another tv show analogy, but on Ugly Betty recently this was exactly the story line. The guy gets the girl and then the girl's cancer recurs. She tells him goodbye but he says he's there for whatever. She write poetry for a reading and when he realizes its about their sex life, he tries to discourage her. Finally of course UB prevails upon him with wisdom and he snaps out of it and puts aside his vanity. But that's a TV show. In real life, the people close to you have a vested interest in how much you disclose. In art such as writing, the only way it can be really good is when it exposes something about the writer/author/painter etc soul. So from this I segue neatly into arguing with you about you not being a writer. Of course you are. You created CaringBridge, and every time you write here, clearly you are writing. Is a writer not a writer if they aren't being paid to write? That would put the distinction in the hands of the people who are in the business of art and explains why so much great art is not appreciated until the artist dies; simply more profitable by yards.
On the Tamoxifen thread, I was poking around there around the same time I joined this train, found some interesting threads much like this one. I am good either way but wonder if other people who are starting on Tamox at the same time may not find us here. Anyway, I am still a newbie here, so I will follow you gals if you let me wherever we go.
Meanwhile, I did read a lot about people who had to go off their Prozac or other similar drugs and were really worried. I was reading it carefully at the time because this is my great fear, that i will have a reaction to these hormone drugs like I had to clomid. I want to validate your fear, because losing control of your emotions is a horrible horrible experience. Clomid did that to me and I said at the time and I still say it now, I would rather have breast cancer than lose my mind like that. Why? Because with my mind I can fight breast cancer, but without my mind an ice cream cone could kill me. It was a terrifying experience and 5 days of the drug made me crazy for 3 months before it wore off. And the good news is, everyone seemed to adjust quite nicely from their previous meds to the one that goes with Tamox. Forgot the names of the drugs, and I can look up the thread if you like.
I also asked my therapist for research studies on Tamoxifen, I find it unbelievable that they haven't done studies like on what day of the month you start Taxmoxifen does it make a difference in how well you tolerate it- and after driving everyone up a wall and googling everything and reading the whole Tamox thread what I came up with was... maybe there are so little studies because the problems are very few. I got all scared when I read for instance that a couple gals felt their faces were drying up, and i read reasonable discussions of the relationship between estrogen and collagen... but then I would read later in the thread the same gals saying oh right, it's December and my face always gets dry around now... everything is fine...
And one of the posters pointed out that people only tended to post when there was a problem, and that turned the issue on it's head for me. It wasn't like here where we all travel together on pretty similar path, have to do so for a number of weeks. They seemed to like start together and then people fell off because presumably they had no problems and had moved on. Lovely concept, moving on. Right?
But that's just what i read then, I haven't kept up on that thread (like I haven't kept up with anything anywhere for the last weeks).
So all that blather was meant to say that its understandable why you would be very concerned, and it seems like everything points to it's going to be AOK- and maybe that's why your doc was surprised. My onc is a "he" too, and i think they are still always surprised that women have these consistent fears about taking hormones.
Just like the RAD oncs who just seem to forget that even though the burns and bumps heal REALLY fast and well there's no reason why we have to feel burning pain for some days.
Just my .02.
Ha, while I was writing this you posted pretty much the same line- the one I was most worried about writing, that I would rather have breast cancer than lose my mind again, and you wrote you would rather do chemo than...
So it proves both points... validating your concern and also pointing out the best writing is the one that shares the most... the stuff that's actually a risk to write. And you take that risk. Brava, writer!
oh and I am pushing for that test to see if I metabolize tamoxifen, my onc seems to be against it, I will find out why when I see him.
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Right, what mfgibby wrote- Effexor. And just like she said, people seem to switch with no problem. Hiya mfgibby
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OMG Catherine..your post made me laugh so hard! Thank you for that. I am still in my boosters. I have to have 12 of them out of the total of 37. I will be done May 6th! I can't wait. The itching is driving me nuts. I never really burnt, but, turned a lil pink and tanned. I hope that once I am done that I heal fastttttttttttt!
p.s. is anyone considering NOT taking Tamoxifen? I am afraid of the side effects and not for sure if I want to take it or not.
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Rachel......Very true about the writing thing. My girl friends love it when I share gory details but DH is afraid I'm embarrassing myself. He about died when I wrote a story about a dry vagina until everyone at the office told him it was the funniest thing they had heard in a long time.
You're also right about moving on to a Tamoxifen thread. I just love this group and don't want us all to move on. Let me know which one you're going to.
I feel better already regarding the anidepressants. I'm already taking Effexor.
Jeanne.....My onco said the hormonal treatment is equally as important as chemo. Let us know what you find out about not taking it.
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I must have gone to bed early last night and missed all the activity here!!!!! Shucks! I think writing is a great idea. In fact, that's why I started my blog. I started it quite a while before the cancer diagnosis, but when that hit, I thought I would at least keep a record of my journey through this just in case I ever wanted to write a detailed book about it all. I know that the whole thing is so long and drawn out and I wanted everything as accurate as it could be. Now, I can just scroll back and read exactly what happened. I think the success of a book depends on what angle you are coming from. For instance, some of you who have all the mommie issues --- is there a book out there about breast cancer written from the mother's standpoint???? How about the marriage standpoint???? Then, there are all the emotional, spiritual issues, etc. Then, I read a blog about how a breast cancer survivor was asked to speak at a medical school where a bunch of future doctors would be present. She was to talk about what made a good dr. and a bad dr. It was amazing how she described her feelings about that.
There is a website called www.lulu.com. You can actually write a book, choose the type of cover and binding you want, etc., etc., the type of paper, add pictures, photos, etc. It is all done digitally. They give you a price for publishing 1 book. Then, it's up to you to promote your book, and people order and pay for it through the lulu website and they are printed and sent out one at a time. You set the price by how much you want to make over and above what this publisher wants. Since I write a lot of poetry, people have been bugging me to publish a book.
I haven't had to take anything for depression or emotions . . . . yet!!!!! I was fine all the way through this, until the last few weeks. I don't know if it is end thing with all its issues, or the tiredness from the radiation, but I seem to be in a funk. I remember 6 weeks ago my oncologist told me with this HUGE smile on his fact that I was ok and to get on with my life! I wanted to say, "What Life????" LIFE seemed so long ago ------ last May. Since then, most of my life either went on without me or changed or is nonexistant anymore. I need to find a whole new life. Since I'm single and don't have a husband or kids, those constants aren't there for me. Friends either moved on, distanced themselves, or are awkward around me and I hate that. So right now, I feel more lost than anything else.
The only thing I'm worrying about most is the ribs. I'm glad I'm seeing the oncologist on Monday. It seems to be getting worse and I'm wondering if I've broken some ribs. It seems a little swollen and a little black and blue. Anyone else having rib problems with radiation?
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I'm all done with rads!!!! Strike up the band and start the parade...yippee!!
eadsla...I thought I was going to pee my pants I was laughing so hard when I read your post about the idiot who made the comment about the screenplay and your thought. Girl...I'd pay big bucks to the see your play about punching him in the nuts!!! Loved your entire post...you are a very good writer...IMHO. I was told three different things about the radiation peak time...7-10 days, 2 weeks and 3 weeks. Now since two of the radiation techs both said 2 weeks, the rad onc nurse said 7-10 days and the rad onc said 3 weeks, I am going with the 2 week deal. Wouldn't it be nice if they would tell you friggin' everything upfront and provide handout material because you know we won't remember everything???
Martha...you are so not whining! I am so totally with you re saving a bunch of time on the hair...no cutting, colouring, styling...it makes getting ready in the morning so much simpler. I hear you about the fatigue!
Rachel...it is amazing how so much of what they do in rads is so different depending on where you reside...or maybe it depends on the cancer?? I was so surprised to hear both you and nelia48 mention that they marked you up for the boosts and that you were not allowed to remove the marks or put cream on the area. For my boosts, all they did was put two small marks at either end of my scar for each treatment. When I would go and get changed I would wipe the marks off and slather on my cream. Now when they were doing the set up for my boosts, I did ask them if they were going to have to mark around the entire scar area and my preference would be for them not to do this. Yippee...they listened and only did the two small marks. I mean gee it's not like you can't see the darn scar from across the friggin' room to begin with, why would you need to draw a huge bulls eye on it???
ReneeS...My take on your writing...it's great. I don't think it is too graphic, I loved it. Sorry but hubby is just wrong. (aren't they normally wrong...LOL)
Probably should actually get back to the job I get paid for...LOL...and I'll check back in later.
Love to all...PurpleMe...aka Carol
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Purple Carol "Wouldn't it be nice if they would tell you friggin' everything upfront and provide handout material because you know we won't remember everything???"
Can I get an "amen" sister?
Purple Carol " Now when they were doing the set up for my boosts, I did ask them if they were going to have to mark around the entire scar area and my preference would be for them not to do this. Yippee...they listened and only did the two small marks. I mean gee it's not like you can't see the darn scar from across the friggin' room to begin with, why would you need to draw a huge bulls eye on it???"
Genius. We're doing all this crazy stuff with purple ink all over my shirts- wearing black every day now... Eh, I got my surgical pen, I give up fighting.
Nelia- you remain the star out in front leading the way. AND you didn't use any mood kind of drugs? Holy Cow. I met and got closer to some people fighting cancer, and that's surely going to take up more of my time in the future. My attitude is that cancer really pissed me off and you know by now how I fight back
What i learned today (and hell yes, why don't they just have a handout and tell you this stuff up front, like even to get some bras you are willing to sacrifice....
the xylocaine has alcohol in it, so it will burn an open wound and it will dry it out so it will take longer to heal
anti inflammatories like ibuprophen should help because they reduce swelling and pain
I have these big vaselined antibiotic patches- they said to use them underboob, leave 'em on for like 12 hours to aid healing. these kinds of burns actually heal better when they dont have air.
they really dislike the silver sulfadine for all the same reasons everyone here listed. bottom line is always this game is about letting the skin under the burned skin mature enough so that when it's revealed it isn't still pink and young and raw and sensitive.
Last night I had an awesome night's sleep. I did take a Xanax to shake off the Da Vinci Code-like mystery of the pain killers from the day, and I did accidentally stay up too late. But I slept until like 1030! And either my kid did too or else I slept through him waking??? I had little problem with blisters last night, I actually put one of my towels underboob with some cream to let it air out. (My towels are organic and are washed in eco skin friendly soap yada yada).
Today was....:::drumroll::: last whole boob! Tomorrow they flip me like a pancake and do all that stuff with the tracing.
renee- got a link to the dry vagina story?
oh and nelia, I like your blog very much. I dont know much about poetry, but I read your blog when I first joined the group and I was blown away.
jeanneD- yes I absolutely considered it, that's what i was doing on that thread. A woman there posted that she had decided not to and she was doing a special diet instead. I PMed her for it and she was kind enough to send but... by the time she had sent it I had finished the thread and decided to try tamox at least because:
doc said I could take one, one day, and see how i felt.
80% of women tolerate it well- why shouldn't I be one of them?
the gals on that thread- who again by their own word only post when they are having a problem- some said if they had a problem, they stopped and then waited 5 weeks and started again and had no problem
at least one of them posted that she not only felt fine, she LOST weight
one woman posted , she is stage IV, she took tamoxifen and all her tumors shrank and went away, she is now considered "NEC". I had to look it up, it means "No Evidence of Cancer". She of course LOVES tamoxifen.
so... why borrow trouble I don't already have? oh and one more thing, my last period was 10 frikin days. TEN. If this stuff works, that shouldn't be a problem. It might also shrink my fibroids- stands to reason although I couldn't find any research on that, only that in post-menopausal women it might grow fibroids. That's the next distinction, pre or post menopausal, which essentially means tamoxifen or aromatase inhibitors. There was some talk of splitting the thread too, because the SEs are not at all consistent between Tamox and AI, although some people would have a reason to change from one side to the other.
There's also shots that shut down your ovaries, and there's also new beneficial evidence about another shot that is usually meant to strengthen your bones, it can greatly reduce the chance of recurrence yet again- plus its good for your bones. All that made me think gee, Tamox may not be so bad after all.
My onc hasn't told me his views on the metabolizing test yet, but his phone-answerer said he'd order the test if I want to get it.
Did I already say my onc gave me a choice, I can see him in a couple weeks or I can see him next week, and then when RADS ends no more doctors for a while. I opted for #2. I see my onc after my last RADS a week from tomorrow. (I feel like Annie singing, Tomorrow, Tomorrow, I'll start my boosts tomorrow).
I am hoping he will say I can wait til after summer to start Tamox, and that aside from the Tamox and 6 month screenings for mammo and uterine (thanks to Tamox), I'm done. I swear, if he says that, i really dont think I am going to feel at all depressed!
One more thing about the Tamox... I thought it was insane that no one had done a study on which day of the cycle a woman begins Tamox. I thought it would be smart to begind Tamox at the part of the cycle where the body already is expecting a reduction of estrogen. Seems a couple gals on that thread had the same idea. The ones who did start it on or near their menses had problems, the typical bad period symptoms which are the side effects i fear, the emotionality, weight gain etc. So I can only guess ... the ones who had the easiest times unfortunately also said they just took it whenever. So my guess is that maybe the ones who took it "any day" were less likely to have taken it on their period, because women have a tendency to remember that timing more. My extrapolation is that by taking it on a day one feels good, it maybe sort of freezes your metabolism at the point where you take it. Feeling good might mean you freeze it at feeling good, the part of my cycle where I feel lightest, have the most energy, like a few days after my period ends. That's all just my weird brain extrapolating from a lack of actual data, just anecdotal as they say. So I will give that a whirl, hopefully in the colder weather b/c everyone says the hot flashes are easier to tolerate in cold weather plus hot weather is a trigger for hot flashes.
And then of course I have been researching how best to handle hot flash symptoms...
OncotypeDX 17, Lumpectomy 36D, Prone, 5 wks plus a week of boosts, BoIron Calendula + Organic Aloe Vera, swelling and redness
Dx 1/26/2009, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Nelia....What you're feeling is normal. I know you don't have kids but I'm sure you've heard of postpartum depression. I think what we're experiencing is very similar to that. We've been through a traumatic train wreck. We did what we needed to do to survive and now it's time to turn around and look back. Can you believe the horror of it all? It's scary and frightening. I always fall apart after a crisis. And I will continue breaking down for a week or two. You need to come with us to Las Vegas in September.
I had rib problems that seem to have gone away. You should have had x-rays done. Ask them if they saw anything.
I agree with you on the writing thing. If you don't have a unique, compelling reason for people to want to pick up your book, you're like everyone else that has cancer and wants to write a book. (I'm generalizing here. I don't mean you.) I can just hear the publishers and agents....... "Here's another one about someone's battle with cancer." Since no one seems to know what to say to people with cancer, they tell me I should write a book. Nice pat on the back but other than my mom, I don't think anyone else would be interested. Would that stop me from trying? Absolutely not. But I can tell you now that the first time I was turned down; I would hide under the bed and never come out. Along with my family and friends, writing has been enormously therapeutic.
I'd like to read your poetry.
I'll look into the web site. My family wants me to print them a copy from my blog.
Purple....YEEPPPPYYYYY!!!!!!!! Congratulations!!!!
Martha.....You and me. One more day.
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Rachel......The Dry Vagina part of the story......
The one thing I know for sure is people with cancer don't want their loved ones to worry about them. So online discussion groups are a great place to learn and vent without overburdening anyone you're close to.
I now get a chuckle when people say to me "My grandma did chemo 3 years ago and she just breezed right through it." Of course she did, she was hairless, boobless and aerodynamic. She wouldn't even notice a 60 mile an hour breeze.
I know different. I chat with Grandmothers online. Do they really think that Grandma is going to burden them with a play by play of the lack of fluids in her body that cause her calluses to crack and bleed every time she walks across the room to manually change the channel or share with them how many little bottles of eye drops she had to use per week just to see through her bifocals. I can just see dear old Grandma telling her grandchildren all about her tear jerking constipation or the "I just couldn't make it to the bathroom" story and last but not least, all about the dry vagina."
I say, get your Granny on the phone I want to know how it really went.
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You said it sister... "online discussion groups are a great place to learn and vent without overburdening anyone you're close to."
..."get your Granny on the phone I want to know how it really went."
HOWL!!
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"I'm here to tell you that there is no other pain like a crispy fried, radiated nipple on a cold day. None."
Renee--LOL and ouch at the same time. Your blog is coming along well, and you demonstrate an innate ability to "set-up" with a surprise punch at the end. That's no small feat comedically.
Rachel--that Presidential flyby...? Man, did someone so screw the pooch on that one. Even after a few days, my mind still reels with the thought of "What were they thinking? A photo op?!?!?" Jon Stewart said it best when he commented: "Hey guys, ever hear of Photoshop?"
Thank you so much for your comments on writing. I feel a bit humbled by them and not nearly up to the task of verbalizing how great I think you and your words are. Your husband? Pardon my french, but QUEL GRAND PENIS! No disrespect in the broader sense but seriously...what a douchebag. Anyone who makes that sort of commentary to anyone about anything has got a lot of self-esteem issues of their own, if you ask me. I've always been my own worst critic...but I've never been that hard on myself. I hope that's no longer an influence around you. It doesn't seem to be which is why I feel so comfortable calling this guy a douchebag.
Your thoughts will stay with me when I feel a bit more mentally engaged to think about writing. I'm not even allowing myself to "go there" right now. BTW, I think it's great that you write about autos. Years ago, I was a "product specialist" for Infinity. Well, that was the corporate euphemisn, but I was actually one of the people on the turntable at the autoshows...inundated with just enough product knowledge to understand the scripted material and know when to hand off questions to the local dealers. I also enjoy Top Gear on BBC. Do I get half of what they're talking about? No. And you certainly don't have to be an expert to make something interesting to others. It's much more of a talent being an interesting person and being able to relate others. And everyone here, especially you, is just that.
Renee--didn't want to follow the first part of my post to you without a bit of a buffer between loving your nipple analogy and wanting to say that I was sad to hear about your not being able to continue with your prozac. Jeez, really...when does this whole thing stop throwing these sucker punches at us? This is what is so hard to convey to friends and family who want us to tell them we're getting better. Yeah, you get through chemo, your body rebounds...then there's radiation, which is physically less demanding and signals that you're beating the cancer...and everyone feels better knowing that on the big parts of cancer treatment, you're doing better. But how do you possibly have someone understand when you hear that something that has been a staple of your life for so long is no longer available to you...and it's somethihg that helps you emotionally. I hope that something else can be found to work as a successful substitute.
I still haven't had the talk with my onc about tamoxifen. Since I'm ER+, I'm assuming that I'll be on the 5 year protocol as well, but I don't know why my onc has never mentioned it to me. So, if you all end up migrating to another board...lemme know.
Also, I signed up for the Vegas TaTa trip, and I'm hoping to be able to make it. Right now I'm in a room with 3 other women that I don't know from any of the boards I've been on...and my sign-in name was really spelled badly, so I know the other women must be thinking "Who in the hell is THAT?" So if anyone here is thinking of going and needs a roomie...? Just putting it out there.
Just another day of rads before the two day rest period this week. Yay (clap clap)!
Catherine
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Thanks Catherine, on both subjects. I have an appointment with my GYN on Monday to go over my options for antidepressants. Just so everyone knows, I'm not a nut job but I need my life back as close to the way it was before and I can't do if I'm crying all day. It's bad enough my long hair and waist line are gone.
I'll stop whining now.
Anyway........Catherine, you're more than welcome to room with me and my 25 year old daughter.
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Renee--I hear ya on wanting to keep things as close to the way they were before all of this. Just as I thought I could wane myself off one thing, then something else had to be addressed...like having two teeth break(then go black) from chemo resulting in having two wisdom teeth pulled last week. The I found out that the house I rent has to be tented for termites. I'm able to put it off until after the rads, but sort of takes the joy of finishing rads when you know that you've got to clear out everything and displace yourself fro a couple of days. Can we just get a break? When the things that keep us grounded get yanked...it's too much to handle. And it makes it all the easier to just tune it all out. We already have that list of "it's bad enough to have to "deal" with hair loss, chemicals flowing through you ALL the SEs, sleep issues chmopause, chemobrain, no energy pain of burned skin, LE, ports. Yeah we all prepare for those "expected "SE...but then you get hit in the stomach with the prozac. There's gotta be something else just as effective. And hell yeah, if you and your daughter want to share a room, I'm all for it. I have a niece who is also 25. I would love to have her come out, but her life is crazy in Baltimore right now. Let's look into it!
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Just wanted to add that I popped an ambien cr before that last post. In rereading it...I sound a bit spacey. Ooohhh time to call it a night. Tomorrow's tx will be 18 of 33. How quickly it goes...
Okay, I am now officially in ambien-land. Nite all!
Catherine
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Goodness Gracious Great Boob of Fire... woke me again, but this time i don't care so much. I know it's nearly over. Took ibuprophen, re-slathered need to update my sig... Ha Catherine- like Pollo Loco... So I come here and start lauging...
Oh and Catherine, that's not MY husband, I haven't one. It was the husband of this couple I was visiting... another story there too... oh LOL I think I did the auto show route once when I was trying to be an actress... The thing and me car writing is more like the Idiots Guide to... I call it the "blonde version" and do installations that are Blonde-Proof and I organized car events, drives charity stuff, but the book was (and I hope still is at some point) about the cars of Frank Lloyd Wright.
The presidential fly-by, well said, it makes me too angry to even speak about. That and that they didn't adopt a shelter dog.
Renee, we already knew you were not a nut job. Well, not more so than the rest of us
On the Las Vegas Trip, I didn't follow the thread, in fact I haven't really found my way aroudn this board and only manage to find my way to this thread by keeping it open in a browser window all the time. My browser finally crashed and I found my way back by recent posts I think... So I haven't kept up with the thread plus I dont know if I can actually go with my then 20 month old kid...
Catherine, did you talk to your RAD onc before you did the dental work?
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I just love you gals!!!!! You are all so animated and full of life here! Just cheers up my morning coffee, for sure!
My teeth rotted during chemo, too! I feel like a rabbit now, chewing with my front teeth. So many of them just rotted and fell apart right down to the gums. I'm afraid I'll be having teeth in a cup on the sink pretty soon!!!!
Hope everyone's boobs settle down for the weekend!!!!
By the way, I did figure out that if I put that silver sulfadiazin. . . . ? stuff on a bandage and spread it around first, and then put the bandage on the burns, it was much less painful, etc. When I tried to spread that spackle on with my fingers, all I did was tear skin off, etc. Horrid!!!!!!
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Renee - that's really good - the aerodynamic grandma.
Rachel, the "shot" you heard about that strengthens your bones and may reduce cancer recurrence by about 30% is probably Zometa. It isn't really a shot. It is an IV infusion that they drip in over about 30 minutes. There are three bone strenghtening drugs in the same family - bisposphonates - that are being tested to see if they reduce breast cancer mets. That is the SWOG S0307 study that I'm in. The other two drugs are given in pill form - clodronate and ibandronate (Boniva). All the drugs are given at a higher frequency to prevent recurrence than they would be to just strengthen bones. The pills are taken daily for 3 years. The zometa infusion is once a month for 6 month and then once every 6 months for the rest of the 3 years. I'm in the clodronate arm. Women in the study are also suppose to take supplemental calcium and vitamin D so I'm taking 4 big pills (two Clodronate and two calcium/D) each day.
Clodronate has been shown in previous smaller studies to reduce recurrence so this study is now looking at all three drugs to see how their results in reducing recurrence and their side effects compare. To join the study, one has to be getting chemo or hormone therapy and be within 12 weeks of surgery or within 8 weeks of completing chemo so it is probably too late for most here to join.
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bluedasher, I remember looking it up when you mentioned it before, and I was pretty excited about the pill form you are taking vs. the infusion. How are you doing with side effects- and is there any way you can tell what is a side effect from which?
I changed my picture and added my web site to my profile, but I can't imagine anyone here would be interested in the stuff I write about the cars, its a lot of nebulous minutiae only an "enthusiast" would enjoy mostly. My first published paid article was a big spread in the car club magazine, but the editor did a horrid hatchet job on it, writing in things I did not and would not say. The rest were small bits about my charity events. Then there was some stuff in motorcycle magazines but I don't have them as pdfs, and some in the FDNY union magazine- when there were 2000 motorcycles of 9/11 first responders, survivors and such who rode to all three plane crash sites, and then some more articles of the troops and firefighters. I was working on the Frank Lloyd Wright cars when the fire destroyed my home- but thankfully not my research notes. Then there was and is the problem with the idiots at my building, then I had my son, then I got breast cancer, so that's fairly stopped my writing, except a very few updates to the web site.
Although I thought my spirits were good, I guess somehow the big pain that started last night and into today is really gettin to me. Strange, yesterday all was good. Today I am a real mess. I think it was Renee who said that the bottom line is just that some people are going to have a big bag reaction and some people aren't, it depends on your skin and all, and no creams or potions are going to make the difference. I wanted to believe she was wrong, but she was right. Although maybe maybe that one night I had a couple glasses of wine started the trouble, but other than that, I have been a perfect little camper. Doc said it shouldnt be a problem.
I believe all the explanations that were given to me (finally) about what to use and what not to use, and that this is just the best I can do. Still, I couldn't get myself together today for treatment, arrived late and when I got there I started crying and couldn't stop. Took a Xanax and it seemed to do nothing. I took their entire stock of Xeroform petroleum patches, those things are pretty much heaven, but I have a lot of surface area to cover. Hard to cover all the curves and especially the nuclear cooling tower that is my nipple. I look like a mummy with all the swatches of cotton have stuck on with calendula cream, and basically it's impossible to get them to stay like under my armpit.
All the while i know that I am not all that sick, it's no big deal, and so many people have it so much worse, so I feel pretty stupid complaining. I walk today like the walking wounded, as if its so much worse than it is . I can hardly speak. I am confused. I'd say I really wasn't in that much pain, and alternately I'd say I am a lot of pain- but can't tell. Years and years ago I had terrific pain from a cyst on my coccyx while traveling in Israel, far from good medical help. A Spanish Doctor and French nurse were at the same place (it's hard to explain, it's called an Ulpan) anyway... and they were taking care of me, draining the cyst and using only hot water as a pain killer for the procedure. Once when I tried to go to the toilet, I fell, and the pain was so bad i stopped feeling it. I saw a red sparkly curtain fall across my view, and I remember thinking, "Well at least it's entertaining now." So I am wondering, is that where I am now? Does it hurt so bad that I can't feel it and that's why I am confused?
I discussed pain management more with the nurses, if there was any point to taking some hydrocodone I found in my cabinet, she said why not? I know some kinds of pain are not affected by these sort of painkillers, like if you have an infected tooth root, you can take all the codeine in the world and it aint gonna do poop for ya. Must be anitinflammatory- which I am taking, ibuprophen, but to the point now that my stomach is upset. Easily done, I have reflux problems before Breast Cancer. And hydrocodone is constipating, more fun I don't need. Plus, these kinds of pain killers mess with my mind (they do with anyone) and can easily make one feel depressed when they wear off. But I am just miserable, so I took one. I would rather go for nice meal and wine but since alcohol may be what started it hurting, I can't go there.
So happy today is a day with the sitter, I wouldn't have been able to take care of my son today. I mean, it would have had to have been like one armed-diaper changing, no idea how I would lift him into things, I probably would have fed him on the floor and just given up.
When I read what the chemo survivors on this thread are going through I just marvel and wonder in fear what I would have done if I had had to do chemo as well. I just don't know. I'd like to think I would have done it and found a way, but I just don't know if I could have.
I wish I could just crawl into bed covered in the petroleum bandages, take painkillers and sleep for days until the skin does that miracle healing I keep reading about (especially nelia). Or maybe tomorrow will be like yesterday, much better. Today was first boost, which should mean first day the boob gets to start resting after whole breast.
Oh, it's heavy rain here- that could actually be a part of my problem. Even nothing to do with breast cancer, on a normal day, rain can take me out.
So I think tomorrow's going to be fine. Sat and Sun its just me and the kid. So I will keep the sitter today until the kids in bed for the evening, or close to it because sometimes he goes to bed late...
At least that worked out really well, it was me and the kid Weds and Thursday and I was doing really good then, now I have help and have a tough day, so I feel I got away with something!
So Catherine and everyone left following this train, I am sorry to have to admit, as much as the calendula and aloe do help prevent problems and heal the skin, it's also possible you'll just end up having to deal with the discomfort.
I swear, I am not upset, really. Knowing its all over in a week, that I made it through big part keeps me happy on the inside, and these boosts are supposed to be really superficial, I can even leave the creams on the rest of my boob while they do this spot, so I am still thinking each day now is going to be a big improvement- yes even though there's the 5 day delay, at least there isn't also a big whole breast dose happening at the same time.
OK shutting up now, I feel bad but I swear I am doing OK, but it's just the kind of thing that off-forum people don't get. To them I must look truly pathetic and I wish I had a sign saying IT LOOKS WORSE THAN IT IS- and meanwhile still ask them to lay off me on the crowded pushy NYC streets. Eh, I think y'all know where I am coming from, and I am sorry if I sound like i am whining. It's all good, but I am STRANGE today.
Oh and the othehr thing that was really working my nerves was worrying that in my effort to relieve the pain with these vaseline patches and creams, it would wear off the markings they drew on and left with stickers. So they re-stickered me and I'll do my best but... if they have to re-draw it on Monday, so be it. I'm doing all i can.
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Rachel, my rad nurse said that Aleve might be easier on the stomach than Ibuprophen and would still act as an anti-inflamatory.
When I was getting boosts, they told me not to worry about the marks wearing off over the weekend. Try not to let that bother you.
I hear you about feeling bad about complaining when others have it worse. I feel that way too. But it hurts and interferes with sleep - it doesn't hurt as much as some other people's rads burns and I'm greatful for that, but it still hurts enough that I want to make it stop. Its not much of a problem for me during the day - but I want to be able to find a comfortable position to sleep in.
Stomach doesn't work - the radiated breast objects to the pressure.
Left side doesn't work - that puts pressure on the burned area under my arm and a bit on the breast too.
Right side with a pillow between my left arm and body to keep pressure off the burn doesn't work - I've still got some soreness left shoulder from bursitis - the treatment of that was interuppted by discovering the breast cancer. Maybe now I can get back to working on that.
Back almost works but I feel like I'm drowning from the Herceptin drippy nose and I've just never liked sleeping on my back. I think tonight I'll try the wedge pillow I used while recovering from the lumpectomy.
I don't get any symptoms that I can identify as being due to the Clodronate or Calcium. Possibly a bit of a tendency toward diarrhea, though that might be normal fluctionation - my system sometimes runs that direction. My nose is a bit drippy but I haven't seen that on the list of side effects and I'm on Herceptin which can cause that so its probably due to the Herceptin.
I got my blood test because I've got a check-up with my medical onc Monday (because of the bisphosponate study and my Herceptin) and I'm disappointed to see that I'm anemic again - almost as low as my worst readings during chemo. The only lower red blood cell and hemoglobin results I had were the two times during chemo they decided I needed a transfusion. Rads can cause anemia and I was already slightly anemic when I started rads because of chemo.
Anemia is probably part of feeling tired during rads though I haven't been feeling tired. My body is so use to running with low red blood cells during the 4 months of chemo.
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Seven petroleum pads later... plus covering non-stick bandages and some scotch tape... and ahhhhhh relief. I feel like me again. Just as long as I don't move.
Of course I completely understand the inability to get comfortable at night- and there's the delayed reaction pain... like I turn a certain way and think well this is good, I feel no pain and then.... it comes... like oh the boob was pulling on some burned skin but it took a moment to translate to pain, then moving it back to where was may have made some relief but I can't tell for another moment or two when the pain from the previous move subsides. it's like a frikin art form. Before BC I mostly slept on my back but every so often I would FLOOMP over on my stomach for a bit. Well that's out for sure. So when i get aggravated about having to stay on my back I remember this Oprah show with all these older women who had GREAT faces without surgery. One thing they all had in common was sleeping on their backs. So I let my vanity kick in. See, what I am doing will be good for fighting wrinkles...
I wasn't exactly anemic but I did have some low iron recently, so I am taking Iron and Nexium daily.
In my confusion, bluedasher, are you taking Tamox? I am confused b/c I thought they only want you on Tamox if you are ER and or PR +, and I thought that was the zolodex bipphosphonate criteria as well. But right now I seriously would be and am confused about which is my buttocks and which is the hole in the ground so I should probably shut up.
Still talking and still probably should shut up, why did they take so many nodes from you?
On the Herceptin all i can say is that my friend who is a pathologist at Stanford was very excited about Herceptin, she felt it was a wonder drug and so successful at stopping recurrences.
On the Bursitis, I have to check that out myself, my PET/CT scan saw some possible inflammatory joint disease in the same side shoulder as the cancer boob.
Oh I am just so damn happy to be out of misery at the moment. They say only to wear the petroleum patches for half the day, so I am hoping they stay put from 8pm to 8am. And of course hoping when they come off some big improvement happened.
Those who ended up using the Silver Sulfadine, aside from the trouble applying it (which nelia reminds me they figured out a great work-around, put the stuff on the bandages FIRST then apply the bandage, I think eeryone said that they did alleviate the pain, and they did speed healing, but the bummer was trying to get the stuff off because it takes a lot of skin with it. Anyone, does that sound correct? I am just checking because if the petroleum patches stop working, that'd probably be my next idea to try.
And bluedasher, I asked THEM bottom line, if the stickers and markings come off can you manage on monday to find them again, and they only reluctantly said yes, like it would be some big problem but they'd do it somehow. Well hey, I will do my best to preserve the marks but at this point, pain management is coming first.
Oh I am just so relieved to be relieved. I am a human again.
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Rachel, oh hell, Rachel. I am torn reading about what you're going through. Torn becasue I feel for ya and wish you could have avoided all of it, but yet also so entertained and impressed at how effing LITERATE you are about it. And don't you even think to censure or apologize for what you think is "whining." You did that several times, and had I been in the room with you, I would have been tempted to smack you in the head (would have said boob, but that would have just been cruel). Seriously, you're in pain and we have all seen pain. We know where you're coming from and there is no threshold of experience that makes any of us here more or less deserving to vent what particular hell we're going through.
Truly, this is the one place where I almost get offended when one of us feels compelled to apologize for domething that is worth whining about. I'm guilty there as well. But it's also what makes this pace so great...the empathy. In the "real world," it surprises me when I notice how often others bitch about things so inconsequential ad nauseum and yet feel entitled to do so. Never a thought at how they must sound to others. So...no more apologies, ya Great Boob of Fire!
Your writing sounds great...but I'm not surprised by that. You obviously have a great sensibility and POV. The cars of Frank Lloyd Wright is also a great topic, and would already seem to be marketable to several audiences. I could actually this as part of a series of books. I'm glad you didn't lose your research. Did you post a link to some of your articles? Also, glad to hear that douchebag person wasn't your husband...but even more aghast that someone who wasn't even a relation had the gaul to say something like that to you. Not that it's appropos either way, but somehow family usually is the source for such asinine inconsideration. No doubt there's a story behind that couple!
LOL, there's so much I want to respond to that I have to keep scrolling up and down the page. Rachel, have you tried using the "make this topic a favorite" function in the website? I think at the top of each page, there is a box you can click to ame the forum one of "your favorites." The whenve you log onto the message boards from the sites mainpage, at the top you can access the forum and it throws you onto the last page you were on. LOL when I think of you having to leave the browser open. Listen to me, this is coming from the girl who couldn't figure out how to do a signature line or post an avatar on this site for about 5 months!
I'm not so sure I could handle not being able to sleep. I've been on ambien cr for the past three months and it's the only way I can get at least 5 hours of sleep continuously. Just last year, I could sleep for 11 hours and think nothing of...well, not nothing. I love sleeping. The next best thing to me is napping. (sigh) Well, used to be... Damn, I have to train myself to sleep on my back. Right now, the only way I can fall asleep is on my side...yeah, the side being grilled, of course. Usually I'll flip onto my back during the night for a bit, but usually end up back on the side. Great, another fun project courtesy of bc. I'll try to see it from the vanity angle as well: "How do I keep wrinkles at bay...? Why, silly... It's easy. Sleeping on my back becasue the pain is too intense to sleep any other way because of having my breast radiated daily because of breast cancer! (Ask your doctor, your resuts may vary...)"
Renee--I'd be happy to room with you and your daughter...I forgot if I had already posted that or not. There are also some people from January Chemo group that are also just hearing of the trip as well. We'll work something out. My circumstances make the trip relatively easy for me. If I had a child or lived across the country or was unable to get time off, or handle it financially, then this would have been one of those luxuries that I would have had to pass. I'll probably spend most of the time planted in front of a slot machine or buffet. Hmmm...That doesn't seem like the way to do Vegas, does it? I'm sure I'll be more involving once we all get there as a group.
On the dental issues...yeah, I had both my onc and my rad onc clear me before having anything done. My onc also made sure that I had bloodwork done and provided me with the lab results to give to my dentist before the teeth cleaning, and to the specialist who pulled my teeth. Both entists were relieved and grateful to have the lab work since it saved them having to have it done, and also showed that I was good to go for the work itself. I had my follow up with the specialist who looked at me where my wisdom teeth were on one side of my mouth and said that he gave it an "A." Dental work was always the thing that I avoided if possible and feared. Not anymore. Having wisdom teeth pulled was such a walk in the park on every level compared to bc. I sort of felt like Brenda Lee: Is that all there is?
Blue...keep posting about your clinical trial involvement. Once again, this was never mentioned to me by my onc. My lat chemo was on March 6, so I'd be really pushing it to try to get in on the study. Is your insurance covering it? Did you pursue it yourself or was it presented to you by your onc? Since I probably wouldn't make the cut off, timewise, perhaps I shouldn't dwell on why I wasn't doing it...but I am really curious to hear of your experience with it. My onc still hasn't mentioned tamox to me yet. My next follow-up with him is at the end of May which coincides with the last of my rads, so maybe then...?
Okay, it's only about 7:45 and I'm already feeling a bit drowsy. Gonna go grab something to eat and then hit the sack. I'm going to send out some energy for all of us to get some decent rest this weekend.
Catherine
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Wow...just reread my last post...sooooooo many typos. I guess I could have gone and done the edit...but it's so much easier right now to just acknowledge it, laugh and apologize.
C.
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"it surprises me when I notice how often others bitch about things so inconsequential ad nauseum and yet feel entitled to do so"
Amen sister. That's part of the perspective problem, socially separating. As previously said better than me now, here is a place where we can speak about things that are too uncomfy for our family and friends, and not said yet is how much these people need us to acknowledge what they are going through without cancer. But it does gnash my teeth. My gal pal who came over and is sooo impressed by me and all I am going through but she's depressed because business is bad and her 14 year old is having to go to a bad public school and she's having no problem with her husband except I think she was saying she didn't have much sex drive. And you know what I wanted to say, right? But I didn't. I just said "Take it from me, as long as you have your health all things are possible." But I don't mean to be dismissive either. Another friend it was more fun. He messaged me that he was having a really sh*tty day. And I said I can probably beat that. He said, yeah you probably can, and it's not fair because sometimes I [he] should get to "win" in that contest. So we negotiated terms and agreed to take the cancer part of my sh*tty day out of the criteria for the purpose of comparison to even the field for the contest. And OK I have one more real kicker, not sure if I already threw this log on the fire but... my dad and his wife are 80 miles away and have a place also here in the city. They decided to celebrate mother's day there instead of here even when I told them there was no way we could make it that far. It's right after my last RADS and 4 days before my birthday and 5 days before they leave the country, her son and daughter are in from the Phillipines and could easily do the driving... and her daughter lives here as well, and every year I have schlepped in to pay my respects for mothers day... ok, so it's hard to balance sometimes hearing from friends who have already tired of hearing anything cancer -related but have a need to have their problems validated- and also sometimes its really good to get caught up in their problems. It's kind of like training to get back into "normal" life once we get freed from treatments. Or do we get freed from treatments. More frikin mystery. Hey, I know I am posting weird crap and I am using the hydrocodone as an excuse.
"No doubt there's a story behind that couple! "
Yessssss. Well since I already have my excuse... here's the story... on my very first car event, it was a 500 mile drive or maybe longer. 20 cars on the highway and 30 minutes into the drive, guess who's car gets hit. Me, in my brand new (3 months old) sports car. So it was a fender bender and I continued to drive with the group, everyone thought I was a hero. I didn't think I was much of a hero or anything but I was a little shaky, and this man's wife offered to ride with me as a passenger until the next rest stop. I can't remember what I was going on about, but in an effort to create a calming connection she offered up a story of her own about how she caught her husband sleeping wth her best friend. ! ! !
Can you imagine the silence after that in my car? I am trying to act cool like oh yes this is comparative and its not at all weird that in some minutes I am going to pull over and greet your husband as you get back into his car. Suuuure. It's why I can't tell you what I was ranting about, because once she said that believe me I wasn't thinking about my fender bender or anything...
So its my own fault that I ended up visiting this couple- actually it was because they recommended their body shop to fix the dent, and i was stopping by when I picked up my car- and should be less of a surprise that this prize of a husband opened his mouth and spoke those disparaging words. But I have learned since. I hope.
"have you tried using the "make this topic a favorite" function in the website? "
Yep, see I was putting the check mark in there but I guess that's not enough because I got no favorite topics
I guess I should "submit" then? but without posting a reply? I will try it now.
"Brenda Lee: Is that all there is? "
HA! Was that Brenda Lee? One of my favorite songs... funny.
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Rachel...my bad. It was Peggy Lee, Not Brenda Lee. Those damned Lees.
Okay, my jaw dropped and I started laughing when I got to the part of the story where the woman told you about her husband's affair. Talk about needing the sound effect of a record needle ripping across vinyl! See, if I had been in that car, after the moment of "crickets" passed, I would have started laughing and turned to her and said: "Lady, what is wrong with you? Why would you...on so many levels, just...why?" During moments of extreme awkwardness, my knee-jerk reaction is to laugh. Not the best tactic, but some things are so awkward, it's hard not to laugh. Yeah, she and the spouse...well, thank God they found each other. No need to subject themselves on anyone else. From a third person perspective, they're a great wtf-type of story. But from a first person perspective, maybe not so much.
You raise a really interesting point about how friends have dealt with us during this. Not so much with the cancer...but more so with us. The psychology of it all is fascinating and really surprising. With some friends, there is so much second-guessing as to what they can handle versus what I end up feeling comfortable sharing. I discovered the futility in trying to tailor my responses to fit what I thought others could handle...and it has been relatively easy to not be judgemental when friends have reacted or responded in ways that frankly, made me raise what little eyebrows I had left. I remember one friend, who is extremely intelligent and I love her regardless, she just went on and on about the crap in her life that she goes on and on about all the time...and all things that could be remedied if she truly believed she was worthy of more and did something about it. Mentally and physically, I couldn't offer her much support as it was during the one of my crap weeks on chemo. Then she began to riddle me with questions about chemo, almost like an afterthought and as if chemo were a class I was in and she wanted all the notes. I was glad to be so tired that all I could tell her was to google it. Seriously, her questions were that basic in nature.
But it's the friends who show you that they "get" you that have made all the difference. One friend of mine in particular just has the ability to do and say things that make me laugh that I had only recently, before bc, come to appreciate, but after bc...wow, on so many levels, he blows me away. But it's also true for me as well that it's a weird balance getting lost in other people's gripes. It helps to be reminded that bc is not the center of everything...and sometimes I leave thinking: "Yeah, I ve got the cancer to deal with...but your priorities are really messed up!" But overall, in retrospect, I find that I get really teary-eyed at some of the kindness I've seen this bc bring out in my friends. I'm still a a bit overwhelmed to try to process all the things I've learned about the people in my world, both good and bad...but mostly great.
I'm sorry to hear about your Mother's Day plans being skewed. Don't take it to heart too much. It's only for this one year, and maybe it'll work out better for you this year. No driving, stay at home and concetrate on just taking care of you rather than having to use a lot of energy just socializing. After all, you're still in a major healing process. You can revisit this issue with your family at a later date, but for now, save your energy for you. Oh and btw, Mother's Day also applies to you! You and your son should do something to that's just for the two of you.
And why am I not surprised you were born in May? Same here!
Wow, I was so drowsy about two hours ago, and then checked the forums. Okay, gonna go...can't wait to not being awakened by the alarm tomorrow morning.
Catherine
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Hello All!
I am finis with rads! The last one was just like all the rest...The staff wished me well and that was that.
About the silver sulfadine--I didn't find it that messy, as Nelia and other did. I didn't put a whole lot on, just enough to "grease it up" so to speak. The blisters or spots or whatever they are on my shoulder and back are about gone--just sort of scaly, like after sunburn. The place under my breast is still open, but starting to heal up--not so sore. I would like to start wearing my bras again, if only so I can wear some different clothes--I'm not going to wear light-coloured tops with no bra...
Had a good celebration last night with friends. I had had a conversation with a couple of them about what I was using on my skin, and they kept saying aloe was the best, I should get an aloe plant. I pointed out that I would decimate the poor thing the first morning, there was so much territory to cover... So they brought me a whole window box of aloe plants!
About friends and talking about it... I thought about that just Thursday. Two women I know, partners, both had breast cancer, and one had uterine cancer (brought on by the hormones, she thinks). Her partner is now dealing with a 4th recurrence of bc. I have drawn a lot of strength from them in previous months, as they talked me through chemo and the beginning of rads. Now I feel a bit whiny if I say anything more than, "yes, I have some burns, but they are healing up well." I cannot even imagine going through this (surgery, chemo, rads) four times. Well, not the rads, she can't do that anymore. But chemo--four times! I have to think that I'd manage somehow. You would have done OK with chemo too, Rachel--you have your son and you are strong! It's like that quote from Eleanor Roosevelt--Women are like tea; you don't know how strong we are until you put us in hot water!
I don't plan on going anywhere until all of us are through this mess...I'm still riding this train!
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Hey, Rachel! I know just how you are feeling!!!!!! I felt like a whining brat through it all!!!! And you are right -- you are not that sick --- it's just that it is so darn uncomfortable and every time you move, you hurt!!! I did the same thing, put on bandages slathered with creams. One thing that helped keep them in place was tight men's undershirts!!!!! Also kept the grease stains off my good shirts.
Martha, so glad you are now done with it! I found the silver stuff worked best as I started to heal more. When I tried to put that thick stuff on that horribly tender burnt skin, it just wouldn't stay in place, slid around when I tried to rub it, and then the skin would just roll up. Later, though, as the new skin was starting, I could rub it in better. My area of scabs is down to about a penny size. The rest is fading more and more each day! So there IS light at the end of this tunnel, gals!!!!!
My ribs are killing me though. Anyone else with rib pain lingering? The stabbing pains are gone. I'm worried about my ribs!!!!
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