MIDDLE-AGED WOMEN 40-60ish
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Hey Everyone! Happy 2013!
Not wanting to butt into a thread unanounced, but was reading through this and came up with a question. Sherry, when did you start taking the biotin? During chemo while your hair was gone? Or did you wait till you finished chemo?
I guess I should introduce myself since age wise I def fit into this group. My name is Deborah and I am a 45 year old SAHM of two wonderful amazing teenaged boys, and a wife of almost 20 years to a very supportive and loving husband. 17 1/2 years ago I went through Chemo and Rad for Hodgkins lymphoma. 9 months of treatment and hair loss and voila! I appeared to be cancer free. Fast forward to this August, my oncologist gave me my 17ish year cancer free clean bill of health. Then a month later my OB found a lump. After all of the testing, MRI's, CT's, Biopsys, etc etc I was diagnosed with BC (triple Neg). 2 1/2 weeks ago I had a double mast and am now gearing up to get my port put back in about a week and then start 6 treatments of chemo right after that. I've done this before and to tell you quite honestly I never in a million years thought I'd have to do this again. ARGH.
I guess it's a good thing my hair grows really fast, but after trolling around this thread, I came across the biotin. Would definitely love to hear when y'all started taking this. Any and all info wuold be awesome! Anyway, happy happy New Year to y'all! Deb
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That is so wild about the Bar of Soap Cure for leg cramps. Wish I knew of it some years ago. My mom used to get them so bad that her leg would look like a cramped deformity. I only recently learned of the pain associated with that and if I ever get another, I'll have the bar of Ivory ready.
Eph, Although I didn't write it, I had just been thinking yesterday that you were overdue to check in, and we are waiting to hear about all those ports of call. That was very smart to have planned all that contracted work while you were away, and to have had it finished by the time you returned. Are you sure the cat is stuck? Try waiting until feeding time and set some food out...if there is a way out, your cat will find it. Not that closet cleaning isn't a good thing.
fmakj, Always good to see you come out of hiding (and this time with a new avatar, no?)
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I don't have great expectations for 2013, but I would just be grateful if I could relax and have a certain degree of comfort with my healthcare team. Is that too much to ask for?
I've been known to embellish a story from time to time, but I will just briefly mention things that were SO MESSED UP yesterday at my MO visit...you probably will not believe that this could all be happening on the same day, but maybe the New Year's Eve party had started early and everyone had mentally checked out by noon that day. Laundry list:
1) I had given a urine sample to my MO's lab, but on my way out they wanted another because the first had gotten "lost." Only, while I was in the exam room, I heard a tech tell my NP they were sending it out to the hosp. I mentioned this to the new tech and she said that they didn't usually send samples to the hosp. but she checked into it. Sure enough, that's where it had gone to. Chalk one up for my eavesdropping ablilities.
2) When the nurse went to change my chemo bag, it seemed like she was just going to attach a new bag to the line already in my port. I said, "Won't you be changing the needle?" "Oh, do they usually do that?" she asked. "The other two times they did," I told her. So she went to check and came back with a new needle set, as she had been told to change it.
3) Remember that I was on a lowered dosage for one week as the mouth sores continued to heal? But last week, I was back up to the "normal" dosage. Well, a couple hours after returning home, I checked the pump display and saw that even tho' I had discussed staying at the "normal" level with the NP, my dosage is mistakenly set at the lower dosage. This I cannot correct until tomorrow.
4) I'm not even going into about half a dozen inaccuracies I found in my copy of the patient reports over the past few weeks (e.g. like where it states that I am still on Tamox., when in fact I have been off it for 6 weeks.) I just made a copy and highlighted areas that needed corrections (but only in the interests of accuracy and I am not convinced that interest exists.)
In the recent past, I brashly stated that I SHOULD BE PAYING MYSELF because I seem to be doing their work. Yesterday was disturbing and I believe I will document it and submit it to quality assurance when my treatment is finished. I really don't have suitable options for switching teams, so my hope is that improvements can be made that will not only benefit me but all those paying to be cared for.
Ever since I had my rude awakening about the competency of medical professionals when my mom spent a month in the ICU, I have seen my theory borne out continuously. That theory being that, much like every other factor in the workforce at large, the medical field is composed of 1/5 who excell in their jobs going above and beyond what is called for, 3/5 of personnel that do adequate jobs, and 1/5 that turn in substandard work. This equation is one thing if referencing how a Taco Bell employee left your chicken fajita out of the bag, but it's another in the realm of healthcare and medicine delivery. Call me a firebrand, but I find it scary as hell that the bottom 1/5 even exists in healthcare. There is just NO PLACE FOR IT. Period.
If you've heard the saying that whatever you do on New Year's Day, you will be doing for the rest of the year...then I guess I will be speaking my mind a lot in 2013. Same ol', same ol'.
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hahahaha, I "assumed" the hands were writing something out in sign language!! I didn't reconize a couple of the letters...doi on me!!!!
Hey, don't mock the messenger!! I heard about the soap in the sheets, I didn't invent it.
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Eli: Wow! Your team is definitely unimpressive. I'm so sorry you have to deal with that, but I'm glad you're paying attention to what they're doing. Somebody has to.
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Eph, welcome back...we did miss you and I'll look forward to seeing some pics and hearing stories. Hope the contacting issues work out - having lived through nightmares here in our home last year, I'd never be brave enough to leave a team and trust that the work would be done! Great that you'll have lots of new stuff though, right? And I agree about the cat - put food nearby and when hungry, he'll appear
Eli, when I was having rads, I had to tell a certain tech each time I got her what my dosage was. She had the wrong "plates" (I forget what they were called) several times. I never said anything to higher-ups, don't know why ... not like I'm usually shy. I agree that there is no place for that 1/5 in the medical field. We've learned important lessons about being our own advocates, that's for sure.
Amrd, welcome to the group. Sorry you had to hear that dx more than once in your life. I really think they need to get somebody new "upstairs" to keep the records straight - one crappy dx per person per lifetime.
And if my conduct today signifies the rest of the year, I'm to do a lot of relaxing - I can stand that!!!
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Hi All
I am new here, I had a double mastectomy back in 2010, I did not have any reconstruction and would love to say I am flat, but concave would be a better way to describe my chest. I would love to be able to not wear foobs but I am a bit overweight so if I try to go flat I look like I am 6 months pregnant. I am trying to loose weight but it is very slow progress. I just wondered if there are others out there with the same issues?
Kathy0 -
Boobeenone: unfortunately I also look pregnant, but since I'm 60 it is not such a good deal. It seems to me that my body alignment is off and that I stand differently now with my tummy out further. I have some cleaveage, but it is truncal lymphedema!!! It seems my stomach muscles have changed. Maybe somebody can shed some light on this posture thing. I am remaining flat and no foobs.
I wanted to chime in on the soap. The nephrologist I worked for shared that with one of our dialysis patients and it was a miracle for him! But, it didn't work for me at all. She instructed him to use ivory soap under the sheet at the end of the bed. Maybe it s mind over matter, but who cares if it works.
Hopeful for all to have an uneventful New Year.0 -
Boobeenone, I had a double mast at the end of 2008. I had to wear sweaters or jackets over tanks and short-sleeved tops to hide my belly until I started to stand differently. Also, I guess my posture had been getting "lazy" and I have to remind myself to suck in my gut. I can now wear tight tops (NO foobs, just flat) and get away with it. I actually look slimmer now without breasts!! You will get into a certain posture that will help you with your stance. It didn't come right away for me. Also, you probably have a "fat ridge" right across your chest where the underwire would have sat. That breaks down in time. I massage the area aggressively while I'm reading (when I remember to) to break up the scar tissue built up. That area, too, is improving. You just gotta find your new groove! You'll get there!
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Amrdbit,
I took Biotin before my cancer dx......didn't notice any huge difference. After chemo when I could resume taking 15,000 mgs a day, I did notice a fuller head of hair. Nothing on the nails.....1 year out from chemo and my large toenail has turned black again!!
If you start Biotin, stick with it. It takes a while to make any difference!
Good Luck and Welcome!
Lorraine0 -
Amrdbit,
I took Biotin before my cancer dx......didn't notice any huge difference. After chemo when I could resume taking 15,000 mgs a day, I did notice a fuller head of hair. Nothing on the nails.....1 year out from chemo and my large toenail has turned black again!!
If you start Biotin, stick with it. It takes a while to make any difference!
Good Luck and Welcome!
Lorraine0 -
I don't have my city listed, out of privacy for ME, but I am not going to a cancer center that anyone on here is going to, just F.Y.I.
mar, Please tell me you got 10% off rads treatment for doing your techs work.
BooBeeNone, welcome! Lumpectomy here, but a few should be by that can comment on your situation. Keep at the weight loss. Taking it off slowly is the way to go anyway...more likely to stay off that way. Eat less, move more. Boobeedobeedo!
p.s. Ooops, I didn't see this page, and you got a couple replies already.
Also, welcome, Beatmon! I like that you can wisecrack about your "cleavage." Laughing ruefully is better than not laughing at all.
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Deb welcome--I did not do chemo but when I started tamoxifen my hair started thinning really badly. It took a few months before I started noticing a difference.
Eli I sure hope that is correct about what we do on New Year's day is what we do the rest of the year. I sleep most of the day!!! I had a bad pancreatitis attach and spent most of the night up. Learned a lesson in not taking my meds especially when I had fatty foods for dinner.
Eph so glad your back and that you had a good time. Too bad all the work on your house is not finished, and kitty getting under the house!
Kathy welcome
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Happy New year everyone!......and welcome to the newbies!
Eli, your ratio of competent health care " professionals" sounds about right. I learned when my brother was in the hospital for 7 months with a pancreatic pseudocyst there are Excellent nurses, mediocre nurses, and a few really bad ones.......problem being you can't always count on getting the good ones all the time and you HAVE TO be your own advocate! I have been pretty lucky with my team.....but it's sometimes the luck of the draw.
Speaking of luck.....I'm hoping 2013 is a better year for all of us!0 -
Had a wonderful time with the Grandkids for Christmas.
They are such joys....
I sure hope the way I have felt the past two days does not predict my future for this new year. I had a horrible headache. I think it was some cookies I made, baking powder/baking soda one needs for baking but I react to them negatively if too much is in what I eat. The headaches can be excruciating.
Welcome to the new sisters.
Best wishes to everyone for 2013!
P.S. A couple of years ago after my yearly mamm, the report I received a copy of stated radiation changes on the left breast. Yes, there were radiation changes but on the right breast, NOT the left. Had to notify the office & made sure an addendum was put through & every time since, I make sure it is correct. I had the feeling when I told them the error, they thought I was wrong! This could have been carried through my entire file for years if I had not caught the error.
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Question, is it just me or does it upset you when you have to wait for the diagnosis and if you call and your report is in a nurse might say, "Your report just came in and the results are troublesome...you can talk to the Doctor tomorrow about a plan." Why do they caudle us? That was what my friend heard today when she called...why not say, yes you have cancer or stage X cancer and we will provide you with all the details tomorrow. I just don't like being treated like I cannot handle it. Any thoughts?
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Kd6blk, Well, you have (maybe) just read that I feel there is a lot of ineptness in healthcare (which somehow seems more tragic than the garden variety that appears in other occupational fields,) so it is hard to tell if that is just one nurse sadistically creating suspense or whether it is some kind of bogus office policy that they handle the calls that way. I think that by throwing out the tantalizing tidbit that something is "troublesome" and then letting it hang, they are unecessarily torturing your friend. Either they should have kept it MORE vague, just saying that the results were in and the doctor would go over everything the following day OR they should have told her whether it definitely was or wasn't cancer.
But then from the clinician's point of view, maybe it is damned if they do and damned if they don't...while I would be fine with hearing yay or nay on having cancer over the phone (and I have been given the news that way once, and once was in person,) some people just don't want the cancer bombshell dropped over the phone. But it's not like it's a guy breaking up with you, now is it?
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I hate my saga. I hate chemo. I hate my life. No wait, I love my life. I want to fight hard for my life. It's too hard tho'. I am a wimp. Or not.
My chemo is stopped. My rads are stopped. Not mouth sores. All troubles are on the other end, troubles that feel like like ground glass and razorblades. Just because I am descriptive does not mean I am exaggerating (this time.) I am HUNGRY, but ick, who can eat? After I lost the first 5 lbs., I was a cancer supermodel; but now after 10 lbs. it's leaning toward the labor camp look. My doctor (not Mengele, the other one) was of the opinion that it would be a far worse setback to allow me to continue and have me be hospitalized before I finished than it would be to go off treatment for a week a second time.
I had such mixed emotions that, although I feel I MUST stop to get some relief (and some FOOD,) I started to get tearful with a nurse when I also felt that this might let cancer get the upper hand over me. The doctor (he of the quotable quotes,) said, "We want to kill cancer, we don't want to kill you."
I hate cancer so much.
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Oh Elimar, I hate it too. See you've changed the topper to reflect that. (((HUGS)))
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♥HUGS♥ and more ♥HUGS♥
♥
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Eli,
Do you ever wonder why a funny, clever, caring person such as yourself has to go through this? Not that there is an acceptable answer, but I agree with many posters that whomever is in charge should limit this BS to one experience in a lifetime, not multiple. One experience causes enough character-building for a lifetime, I think.
Sorry to hear of your latest setback. I cried after I had my cesarean for my first baby and they served me some awful crap for dinner that I didn't order! Hormones were flowing then, and even with those diminishing I don't know what I would be doing in your situation. Crying, screaming, punching...
May tomorrow be a better day. Hugs...
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elimar, cancer SUX. You got that right. Gentle hugs to you, sweetie!! Does a liquid diet help you at the other end? More gentle when it leaves??
kd6blk I don't think a nurse is qualified to give a cancer diagnosis over the phone. What if she did and then someone went and jumped off a bridge? That's why we have follow-up appointments. It was STUPID of her to say troublesome, but my own doctor used that very word when he called me. He said - and I felt like he was reading a quote - that the results were "troublesome for cancer". Interesting use of her word compared to my docs own word, so I think it's a technical useage. Hold your friend tight!! They should also get her an appointment ASAP!!!!!!! She should have said, "The results are in and I know you want the answer quick, can you come in tomorrow?" Wouldn't that have been perfect?? I judge how bad the results are by how fast I get in to see the doc. So a quick apointment isn't good news. So by putting the quick appointment back onto your friends needs, it takes the direness out of it. Am I making sense of ANY of this?????
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Eli, your comment about me getting 10% off my rads was worth a good chuckle and that's about it
As for your latest "I didn't ask for a break" break from chemo, I hate that you have to do that, but I'm glad your doctor (not Mengele...liked that too) is at least paying attention to you and trying to keep you comfortable while killing the cancer. I don't envy the good docs having to make those decisions. I just hope the break doesn't go on too long, and that once you and the fiend bag are reunited, the remaining course of your treatment concludes without incident. Gotta keep crossing those days off the magic calendar till it's time to look at all this in the rear-view mirror.Since I don't know where you live, I couldn't give this guy the address. He was so hoping he could come over and show you his pet. I'll stop now
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elimar - I hope that you feel better soon. Sorry that you are going through this again.
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Here's E's new theme song! Doesn't she have amazing moves?????
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Thanks everyone.
After a few days and a couple good meals, I'll be singing another tune, and it'll be more like an anti-cancer anthem than the emo song I'm singing today.
George is looking good in that pic. (I'm a marginal fan because he sometimes has a hard look, as in dour, not as in HARD you twisted middie minds.)
I am allowed to eat most foods, not high fat or spicy, but basically any small amounts I can shovel in. Liquids or solids don't seem to make that much difference because my lower half won't like ANY of it, so it's kind of about appealing to my taste buds and I like a nice "presentation." I'm serious about that. I had a toasted cheese sandwich and a dill spear tonight. It's churning in there right now but it was yummy. If cream of wheat was any gentler, I'd stick to that, but it churns just the same. I have a lingering taste of metal + mothballs in my mouth. Why is it always mothballs with me?*
staynsane, In an email to friends I said something like, I was tired of "whatever doesn't kill me, makes me stronger" type challenges. I'm perfectly happy to stay at my existing strength level and just have life go EASY on me for a while.
(*) Remember when we were kids and there was a candy that looked like a mothball? It was white and the same size as one. Inside was a hazel nut (before I liked those.) If you knew any psychos, they would take the empty pack of that candy and put some mothballs inside before offering you one. I don't think it happened to me, but maybe a repressed memory is coming out now.
(Looked them up. they are called Creamed Filberts)
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Eli sorry for your newest delima. I hope the food intake or output gets better in the next couple of days
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Ha! Eph! Is that a video from your trip? When do we get to hear about that?
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You are NO wimp Eli! I'm so sorry you are having such a hard time! I hope your doctor can KILL THE BEAST!
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Lorraine,
Thanks so much!! I SO appreciate your info!! I'll ask about the biotin for sure! (I've already written it down so I don't forget.
Tomorrow I am having my first "fill" with my PS for my expanders. I'm 3 weeks post op.
Friday my port is going back in. (sigh) Thought I was done with that dumb device 18 years ago.
Tuesday I've got a teeth cleaning apt. (yay!)
And... wednesday starts chemo. My regiment will be Taxotere and Cytoxan.
I'm looking into te cold caps and am waiting for the dallas area rep to call me back. Any thoughts? Any words of wisdom? Any advice? Hugs and love to y'all! Hope everyone is resting well right now and that the worries of the day are slip sliding away. Hugs!
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http://www.youtube.com/watch?v=Wmc8bQoL-J0
(Looked them up. they are called Creamed Filberts)