CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Te, he, tomboy, I don't believe you are really a trouble maker. You are a clear thinker!
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DF.......if Tomboy says do it..................do it..............go to the "news help line".........belive me she will get it back.....................in our city they are great at making waves...............
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Vastim.. Welcome to Crazy Town.. Thinking of you.. The waiting for tests and results is the very worst part.. Pull up a chair here, and come and talk as much as you want.
Ducky.. Woot -Woot.. Wonderful news about Sean :-)
Octo..I think.you should do whatever makes you feel happiest about the party.. Hubby will understand whatever you decide.
Hugs to all xx
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ducky, it is too late now. The media op has passed. tomboy, I am just kidding. You are not a trouble maker. You are a clear thinker.
I am on the couch now with no energy. I just got finished reading an interesting magazine article about stress.
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Vastim, welcome, glad you found us but sorry you are here. You have gotten some good advice from the other C-Town members. Hopefully, they will find out you are not stage 4, but if that is so, I know that the treatment you would get is so much more gentle (and effective) than the one you would receive if you were stage 1 through 3c. In those stages, they are going in with curative intent, and will sometimes blast you with everything they have got. They do that, because they want you to have the best quality of life for as long as possible. I know Slow will come soon and give you the warmest welcome you may ever receive in your life! I am going to go and try to find bestbird, because she has compiled and written the most amazing document about all the stages and treatments and info on BCO, quite different, but like a sister document to Dr Love's amazing book. (I think Dr. Love's book should be given by doctors to all their women patients. it's that good.
Oh, little blue flowers! I am kinda repelled and fascinated at the same time by miss marbles! I have spent a huge part of a couple of days, watching her! And laughed till I cried and my face hurt! Weirdly compelling, as is one of my other favorites, Grav3yard girl. Too much fun.
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I have an over the head Bose headphones that a bomb could go off and you would never hear it..........hypnosis shit on my Ipad.......meditation crap on there too.......every stress release tape and CD known to man...............what I need is someone or some thing...or some people to stop giving me the stress in the first place.................I put the headset on and fall the hell to sleep..............one time I actually went to a Dr. for hypnosis.......ever try concentrating with traffic outside his window.....center city Phila........cop cars, ambulances, fire engines............and he had the balls to tell me I wasn't trying..............got a bill for $90.00 back in the early 1990;s..........wanted me to pay when I left..........said "oops forgot my check book"..........."don't use credit cards".....(liar, liar, pants on fire)............never paid the bill...........told them in a letter he should hold office hours in the middle of the street in Phila...........
Maybe I'm just a bad subject............my OB/GYN once told me........"You hypnosis to deliver".......are you goofy.............took from that he didn't think I was a good subject either...........
Tried it all.......stress brings on a heart attack.....had one!!!!!!!!!!! stress can cause cancer.............have that!!!!!!!!!!!......kids can cause stress............have them!!!!!!!!!!!!..................being overweight can cause stress.........about 45lbs.!!!!!!!!!!!!
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Ducky...Thanks... " Diddley -shit " is a wonderful old saying that I'd forgotten about.. 😃
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here is some Jack and Tutti medicine to make you smile. The wind knocked over a garden bench, but Toots using the tortoise to step up to some fresh water:
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Hi all...well, I decided NOT to go to the party, and we stayed home. I know I COULD do it, but when it came down to it, I didn't WANT to do it! I told hubby, apprehensively, and encouraged him to go, but either he is a very good actor or he is fine with staying home. He says he was looking forward to the party for my sake (I introduced him to this group when we got together, but at that point, I'd been involved with them for almost ten years, so he still thinks of it a bit as my club, I guess. Or maybe he just wanted to see me out and dressed up and happy, I don't know...) He says he is happy to stay home and decorate the house and get ready for the visit from my daughter, SIL and grands, and son, next week.
We will see some of the group, including our good friends, at New Year's when we all will be in Monterey to jump in the Pacific Ocean. (It is a dive group). I will wear a hood. Yes, even if I can't dive, I am determined to get wet, weather permitting of course.
The truth is, other than work events, I haven't been to any parties since I lost my hair, and I just am not up for it right now, without hair. I do think perhaps it was a mistake not to get a wig, but it sort of feels too late now, assuming the hair does come back.
Which is my real problem. I know I shouldn't obsess about it, but I am: my hair just isn't coming in the same way that others has. I am not talking about timing, I am talking about the fact that hair is growing, but it is only individual hairs, far apart. No fuzz, no five o clock shadow, just a hair here and there like a little kids stick drawing. Today, I looked at pics I took on the 6th of December, and I can't see any difference between those pics and ones from this morning.
So CT residents, I am making myself crazy: crying every time I see a hair pic or myself in the mirror, convinced I am a freak, convinced my hair is never really coming back. That is the real reason I can't go to the party tonight: I am terrified that if someone asked me how I am, or just asks about the scarf or hat, I would start crying. It would have been the fourth or fifth time today. I can't even write this without crying. I am going to have to stop looking at others' pics of their hair coming back, it feels like a punch in the gut.
Everyone says it is too early for it to really come back (it will be six weeks PFC on Monday) but my worry is that it is coming back: I have new hair, but it looks all wrong, and I can't find anyone else who has had that experience.
Thanks for listening and for encouraging me, even if I don't always go for it. Wish I knew how to stop this worry loop and ease these fears.
Should I just buy a really expensive wig on the theory that then I won't need it, and it will have been a waste of money but give me peace of mind that I won't look like cancer girl forever?.
Octogirl
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octogirl, I had a bad scalp infection years ago. It led to a chemical burn probably due to interactions among topical meds I was using. I ended up with a big bald spot on my head. It took a long time for my hair to regrow. I think I wore a beret to cover the bald spot and maybe I grew the hair I start had very long so I could twist it up to cover the bald spot.
The chemical burn happened in the shower and it was one of the most traumatic events of my life.
You have every reason to be upset. Hair is an important feminine asset. However, you may need to find a way to detach from your grief if is destroying your self esteem. I will send you a private email with some thoughts. In the meantime, I think that a beautiful wig that you can learn how to style or take to a stylist is an excellent idea. It may help you feel more normal than you feel now.
You are being very hard on yourself. Your feelings are normal. I would feel the same way you do. It is okay to make time in your life to grieve your losses. I think your hair will come back. In the meantime, what is the worst case scenario, octogirl?If your hair never comes back, you will still have your life, and you can work with a make up artist and a wig stylist to find a unique look that suits you.
I do think your hair will come back. Hair grows in cycles. It doesn't grow fast in the winter months.
Big hug.
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P.S. Most insurance policies will pay for a wig after hair loss from chemo.
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Octo- (((Octo))) several in my March chemo group had the same experience as you and were convinced as well they never would have hair. They do now, and once it really started, it seemed to grow faster and they caught up with the rest of us. Please try to just breathe. I'm guessing the stress isn't conducive to hair growth. It really is VERY early days still. I'm so sorry you're hurting and worried. Big warm hugs coming to you....xoxox
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Look what just came in the FedEx! I had written Christmas off, but this little live tree already tastefully decorated has saved the day. I didn't think I even cared. I did, a little. The most amazing part is it came from a woman who I became friends with when she rescued two of the birds I had to rehome. She lives in the Atlanta area, is a cancer survivor (multiple myeloma, complete with a stem cell transplant) in remission.
I have never met her in person. Just in awe of kindness and generosity sometimes in the world.
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crazies, I am coming to the conclusion that I don't want to take AI drugs due to the side effects and the potential impact on my dental health. RO said she would be okay if I did one adjuvant therapy. I am thinking of going for the rads and she may be able to arrange for 16 to 20.sessions. Unless I want to pull all my back teeth due to bone loss that I already know about, it is too risky for me to do the AIs. I can do some restorative dental work over a period of years as I am able to afford it, but I am not going to run myself into the ground financially by having costly dental work done that I cannot afford right now.
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How wonderful is this tree, katy! It is such a beautiful gift.
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Katy.. I love your tree 😃
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Octogirl, I can "hear" your pain and I just wanted to give you some encouragement. My advice (if you're looking for advice) is to get the wig. Get a good one--it will probably cost a couple hundred dollars, but it will look more like real hair than a cheap synthetic wig will. Wear it when you want to feel pretty. Wear hats when you want to go for comfort.
I lost most of my hair after the first chemo. I have ratty looking baby duck fuzz in patches and it's NOT pretty. I'm not even comfortable walking around bald in my own home! I wear beanies 100% of the time at home. I never let my adult children see me without something on my head, and very rarely do I allow my DH to see my bald head.
I bought a really good wig right before I started chemo. At first I tried to match my natural hair color (25% silver/75% brown), but I just couldn't find a good match. For one thing, most of the silver/gray wigs looked like old lady wigs--you know, curly helmet hair. My hair is straight and fine so there is NO WAY I'm putting on an obvious wig.
My DH suggested trying to match my hairSTYLE, rather than the color. Worked like a charm! I found a straight wig that was very near my normal cut, kind of a shoulder length bob. The only one in the shop was strawberry blonde, but for some reason I just kept coming back to that one. Finally, my DH said, "You just look happy when you put on that wig. I really brightens up your look!" So, with some trepidation I got this strawberry blonde wig. It's synthetic, BTW, but it looks and feels like real hair. On the way home I had second thoughts--maybe I would look ridiculous as a blonde; maybe it will look to wiggy. maybe maybe maybe... But I have to say, the wig looks great. I have had many people compliment my hair, and some have asked me where I had it done--I tell them "at the salon", LOL.
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Octo, I feel so empowered when I put my wig on. Yes it did cost $$$$. After 6 months of wearing it daily it needed refurbishing and she shaped it as well. It is synthetic, lace front, heat tolerant, microfiber. I only wash it monthly and will probably be wearing it for a couple years as my hair growth is slow and I'm on Herceptin through mid May. At 14 weeks PFC I have a silver flat top.
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morning crazies
Just wanted you to know surgery is behind me. They did have to go back in twice on one of my breasts. Then it has taken 2+ days to get my pain / headaches under control... So hoping today will be agood day 🙂
I've been too drugged to read or write much here..hope to write more soon.
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Not again........glad that much is behind you..........have a restful day.....hug
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octogirl, please you and everybody read the new guidelines on breast cancer survivorship. They are published on this site.
A wig is considered an adaptive device, octogirl. These guidelines say doctors should screen bc survivors to determine their need for adaptive devices. I bought a wig a few years ago and learned that most wigs now in addition to human hair wigs are actually grown just like real hair through an innovative process.
I am nearly positive your insurance company will pay for a high quality wig, octogirl. The more I think about how you feel with no hair trying to cover your head with hats and scarves, the more I believe that you would benefit from a wig and a one time consult with an expert makeup artist. If you lived near NYC, I would refer you to Danny Koye. He has been designing wig styles and maintaining wigs for Broadway productions. He is also a make up artist and a sweet man too.
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Sunday Wave to my beloved CT
I am not sure why I've continued to be tongue tied, but I read and think of all of you everyday.
Katy it's good to see and hear your wisdom back here. I hope you are feeling some ease now that the first eye surgery is over. The tree is so sweet and healing; as are the pics of Jack & Tutti
Octo- hugs. It is so fine if you decide to shift gears and explore a wig. It's OK not to be OK. I'm glad you listeded to yourself and stayed home. Relax into next week and look forward to your New Year dip.
Vastim welcome. Tomboy offered you some sweet words of wisdom. Once you are in CT someone is always in your pocket to support you through the crazy moments. Keep us posted
Eggroll I too hope you press for more clarity around the 'pink' breast tissue.
Ducky- I always love hearing you weigh in on life. I always loved xmas..... this year definitely a little, well maybe a lot, less
PTS how are you? getting chillier- keep the back warm
Shorfi did you decide on shots? on a side note have you explored magnesium oil as a topical muscle relaxant? It really is soothing; not a cure, but a balm.
Waving at you Rain and Rose and Lucy and Cubbie and DF and QMC. ((((mommy))))-Hi Sula!
Slow what's happening over Christmas in your house?
I'm creating a little meditation /reading corner in our main room so will be working a little on that today. Ordered a rug for the space and researching some low cushion 'poufs'.
Hope everyone gets to take a few moments for some deep breathing today.
Hugs
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Octogirl, so sorry to hear you are going through that. You really put your finger on the hot button when you said you didn't know anyone who had that experience. That is the key, isn't it? If you feel like you're the only one, it's so much scarier. But I'm confident you aren't alone, I hope someone will come along and tell you it happened to them and it worked out fine. I would get the wig, and make it some color you want to try out... red hair is fun! Then you can wear that wig in the future whenever you just want to be a wild one... That's just me. I had a friend that used to wear a different wig to our club meetings every month and I just loved seeing who was going to show up next.
For everyone who knows I was freaking about my pink breast that is also now swollen and the pores are enlarging, I finally did find my one person who has gone through this before. A neighbor of mine went through the same thing, what a relief. Edema can have all the same symptoms of inflammatory breast cancer, even the peau d'orange. So I feel better and have since started radiation. After three days of radiation it was pretty warm on Friday. I googled lymphatic breast massage and tried to do that for myself before more radiation makes it too tender to touch. Not happy to have this condition, it's a battle of trying to accept the new normal.
Here is a post I found that talks about the symptoms you can have with lymphedema in the breast, and it includes my pink skin color change and the orange peel look (that's my newest symptom, gee). Sucky deal for sure, but am grateful it is (almost for sure) not IBC. I have almost all of these symptoms. (Is there someway to make these symptoms a separate thread to give other women who go through this a place to find the reassurance they need?):
http://www.nhs.uk/ipgmedia/national/Lymphoedema%20...
Symptoms of Breast Lymphedema
The area feels heavier, firm or hard (fibrotic) in places
The skin may look inflamed (red or pink) and feel warm to the touch
The skin often feels tighter, tender, full or painful
Indentations on your skin become noticeable from your bra or clothing
The area may look different in shape and size
Feelings of sensitivity or numbness due to the effect of surgery on the nerves maybe apparent
There maybe a 'Peau d'orange' (orange peel) appearance to the skin
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crazies, it is Sunday. I think I have lost my mind. I have a weird question to ask about dental health and AI drugs, but I don't want to gross anybody out. The background is that there is nothing known about the impact of AI drugs on people who already have significant bone loss in specific areas of the mouth. It is quite clear, though, that AI drugs could accelerate bone loss in your mouth if you already have it. I was told years ago that I need bone grafts.
So, do I ask my question or do I keep it to myself?
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Ask questions.......I have some bone loss, but also had some lose of bone in my mouth......I found out when I went for dental implants.....I think I said this before.......they did a bone graft, and it took a while for them to be able to screw the titanium implant into it......but not forever.
The Als did not cause the bone loss in my mouth that was found out long before cancer dx.
But they wanted me to go on one of the drugs to stop bone loss, Fosamax or one of those things.......Prolia......after reading up thoroughly on the SE's of that drug I said "hell no"......it mentioned jaw problems as a SE and it was with bone..........so I thought.......NOPE......will take my chances with the Als in my other body parts......and have since gone off of Als after 4 years..............did not like what I read about any of the "bone saving drugs"..........
It is an individual choice.....I have enough SE's from the shit I already take, not adding more...........0 -
DecisionFreak: Another "go ahead and ask" from me, though I almost certainly won't be able to help with the answer.
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Eggroll, glad you found out about breast lymphedema. All though it is more rare, it is possible. I must apologize to you for scaring you, if I did! I am sorry. And, I will try not to do that again! I know I have a little bit, but it developed late in the game, after rads, and after untreated arm lymphedema. It took my BS BS awhile to believe it may have happened to me. I think her ego got in the way. I had over 30 nodes yanked, and some of them were over 2.5 cm's!! Ick. But, I did develop a huge hematoma in the breast itself (green purple blue and yellow) and a seroma there too, that got drained only once, but I felt it needed it done again. And a seroma in my pit, too. I have significant arm damage/lymphedema, but it has never been pink or had the orange peel look. If you go to the search feature, you can find many wise ladies who have compiled a great deal of info and links about lymphedema. I will see if i can find some links for you.
I guess I didn't think it was lymphedema because mine did not manifest itself in my breast till much much later after rads. Here is one link:http://www.breastcancer.org/treatment/lymphedema/signs And there is also Binney4, an amazingly knowledgeable woman here on BCO, and I think our own Glennie19, from C-town, has amassed quite a bit of knowledge about truncal (breast) lymphedema, too. All the best to you, and I would so go with you to appointments! Oh, yeah, the other thing I wanted to say is, there is NO reason I believe, to wait until rads are over to start treatment for LE. Your lymphedema therapist will have seen it all. I know that my arm was wrapped several times, or I had a sleeve on, while getting rads. You could at least see her/him to get evaluated, and maybe they might have a neat trick to help you during rads.
Love all towners to bits!
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ducky, very interesting that you turned down the bone drugs. Good for you that you take charge of these decisions.
Some people have reported the AI drugs make dental problems worse than before. We all know that stories from individual people may or may not have relevance to our decisions.
As for me, I have longstanding dental issues. They are not very visible, because I did take great care of my teeth before the fibro. I need some bone grafts and some tissue grafts. It might be okay to have this dental work done over a period of years but I still don't know if I can afford it. After my disability award, I made a large down payment on the most modest housing available, a manufactured home. I love my home. It is comfortable and cosy, and I have lower energy bills than my neighbors even in the heat of the summer due to innovations in insulation. I live in a very nice mobile home park. I have created my own private world inside this home. This is all relevant because if I try to save my teeth with costly dental work, I may eventually lose my house. I may lose it anyway due to cruel annual increases in homeowners insurance but I could use the money I would spend on my teeth to pay down the mortgage with no penalty for early pay off. Warren Buffet owns my home, but then, I would not have it unless his company did not have a special plan for people like me. I am now eligible to refinance my house after two years of in time payments.
I know this is a stupid question but here goes. Would there be any value in having my back teeth pulled or maybe all of my teeth pulled to avoid worrying about dental deterioration on AI drugs? If I had them all pulled, I would not have to pay for outrageous dental restoration. I have heard that dentures on the bottom make it hard to eat. I am only 61 years old. My teeth look good, though I would look better than I do with tissue grafts in the front. The cost for those tissue grafts could run into tens of thousands of dollars!.I brushed my teeth too vigorously when I was young!
This all sounds so stupid. There are no serious studies on AI use and dental problems. The bone drugs used to fight bone loss in AI mainly cause jaw problems for people with dental problems or those who undergo major dental procedures will being treated with bone building drugs.
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Eggroll, I've been going through lymphedema treatment (for arm, not breast) while undergoing rads. They can handle wrapped arms or pretty much anything. I have to say I felt much better once I started the LE treatment, and my hand and arm are responding well. I did stop the wrapping once I got into more challenging SEs from rads, because the wrapping was too painful when it rubbed against the area that was inflamed from the rads. But I'm still wearing a glove and will start wrapping again when I'm able. It's a process. Not happy about the LE, but the treatment does seem to work.
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D'freak, The bone drugs don't cause Osteonecrosis of the jaw unless there IS invasive dental work done right before, during and after treatment with Prolia or or biphosphonates, or bone strengthening drugs. Ask your doctor and your dentist too. I had gotten mugged in my early twenties where I suffered cracked ribs and broken teeth. Yeah. So anyway, at that time I was a starving artist/student and had no money to see a dentist. But a friend who was a dental tech advised, so I didn't lose all my teeth, especially in front. I did a year and a half of bone drugs, because chemo trashed my bone density.. So, over time from that mugging, I did lose several teeth, to the point that I wear an upper plate, and I have severe bone loss in my bottom jaw especially. My endocrinologist at my tx center is the one who advised me to take them. And I talked with her about ONJ (Osteo-Necrosis- of the Jaw), and it can happen, but it can also happen to people with a normal healthy strong jaw, too. I am not a doctor, although I have a doctor's bag! (really. My man got it for me, several years back, it's getting nice and soft now!) See your doctor, see your dentist. Usually ONJ happens when there is a bit of jaw not covered by mouth skin, and they advise not to take bone drugs near invasive dental work.
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