MIDDLE-AGED WOMEN 40-60ish
Comments
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Don't forget that the "ish" clause in the forum designation allows for flexibility in membership. Also, extra credit is given for immaturity, sense of humor, and cute grandchildren.
Carolinachick: I'm trying to channel some "Tigger-like" energy your way. Step away from the blue donkey gloom and doom! Think orange and stripey and springy!
Moving for any reason always throws people for a loop. I swear that my poor coping skills during two moves in the last 8 years is a contributing factor in my body allowing breast cancer to grow. I have all kinds of theories about moving - it's easier if you fit into a place (it matches your nature and you're happy to be there), and also if you can find some people with what I like to call "legitimate social space." If you are not careful, you spend the second year getting rid of the friends you picked up the first year. If a woman who has lived in a community for ten years with no significant life changes is available right away to go to lunch every week, that's a red flag for "issues." If she just moved there herself or quit working or changed jobs into your office, that's "legitimate social space" that she has for you.
It can be a rough thing - I think we women need our female bonding. In some communities, it can take 5 to 10 YEARS before you feel like you belong in a new place and have true friends. You can literally be living across the street from your potential best friend ever, but if she is a socially healthy individual it will take forever to get to know her, because she's likely busy living a normal life. Nebraska was rough for me initially because all the people were From There and Still There. So they'd have their best friend from 9th grade that they hung out with, even though they were now 40. I eventually gathered a great group of Not From Here Eithers, and I miss them a lot. Texas is full of Not From Here's, but of course here I've had my Inverse Seasonal Affective Disorder to deal with. (I hide inside on sunny, hot days and wait for October.) Somehow, hanging out with my imaginary friends inside my house for six months of the year has not been a successful community integration strategy... Still, it seems that at about four years (which is where I am now), I can look around and see that I have connections.
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Elimar,
Happy to see your day started so nicely. I hope Tamox is nice to you. Hugs, Mazy
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I will be 60 in February, and I am counting on those extra-credits that Kleenex mentioned to allow me to hang around...............
I THINK I have a sense of humor, and I hope everyone would agree I've got some darn cute Grandkids
So I'm hoping not to get kicked out in 2010
I worked today so I had alot of reading to get caught up here, Now it's time for bed !
Good-night my friends
Blessings all around..............
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Move to Wisconsin....seriously....they are the most welcoming people in the USA! Mainers....um....not so much. You're "fram awaya".
I lived in MN for 6 years and had a very nice life, but the first year was very lonely. Long Island is also a little tough for outsiders.
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I feel like I'm off to a bad start already. I got my script for Tamoxifen this morning and my usual pharmacy (inside my usual grocery store) did not even have it in stock. The pharmcist said, "I haven't had anyone on this in a while." That just seemed so strange to me when you consider how many women get B/C in the first place, and then the ones that get Tamox. are pretty much 5-year customers. Hard to believe I would be the only one in their customer base on Tamox. I felt like an isolated freak for a second. I'm getting spoiled by B/C.org, where we are all in this together.
Guess tomorrow will be my first dose of Tamox.--Friday the 13th--that seems about right.
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I am wondering if anybody on this site with a similar diagnosis to me has decided against hormone therapy.
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Elimar,
not to worry, girlfriend
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I get my Tamoxifen via mailorder - 90 day supply delivered to my door. Seemed like the best way to go, what with the five year plan and all. So perhaps others in your area enjoying estrogen manipulation are also getting theirs via mailorder rather than at the pharmacy. That way, they can avoid his charming bedside manner.
You made me remember our family pharmacist at Revco in Tucson. When I was a teenager, I took an assortment of low-dose antibiotics for acne. I remember at least once that he stood at the front of his elevated pharmacist habitat and yelled to me across the store: "Hey, Coleen! How's the acne?" This is why they hang out in stores and mix chemicals. God gave them science and possibly took away social skills.
We are always here for you - you are not an isolated freak, you are one of a big group of fabulous freaks.
Michele37 - I think there are several threads over on the Hormone forum where women argue about the pros and cons of taking anti-hormonals... While I have days when I'd love to toss out the Tamoxifen and lose the side effects, most of the time I can clearly see that it's been in use a long time and my cancer type is what it's good at thwarting.
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carolinachick -
Please let us know how things go at your onc appt on Friday. I know what you mean about those rackafrackin' onc visits - they're very depressing.
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I quit taking Tamoxifen after about a year or so because I have a damaged liver and it was not liking the Tamoxifen, but they check for that regularly to make sure you're okay. Anyway, it wasn't bad at all for me other than hot flashes.
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michele37, I am almost your Dx twin. My tumor was 7mm. Believe me, I wanted to skip the Tamox. portion of the program (and still do) but here's why I won't. With a small tumor and clear nodes, it looks very favorable that the cancer was "caught in time" in other words, before metastasis has occurred. But there is no doctor on the planet that is going to give you a 100% guarantee that you don't have any cancer cells roaming free. When the metastsis is small, a cluster of just a few cells or even just one, it is going to escape detection. So, I want SOMETHING to be taking care of those cells. Our bodies are supposed to have a mechanism to fight those crazy, mutant cancer cells. Well, my body managed to grow that 7mm tumor without putting up much of a fight. Maybe I need the help of Tamox. on this one? In my path. report, my ER/PR were both at 90%, I know I am a good candidate for the Tamox.
The individual cells in the blood is an emerging theory, and controversial, as there are many theories about the metastasis of cancer. I am going to use Tamox. as my "insurance policy" just in case my small tumor was capable of metastsizing. The Tamox. side effects seem terrible, but effect a very small percent of users. Lots of women on here seem to be taking it with little to no effect. So, I'll try it and watch closely for adverse effects. I can always quit.
You'll make a good decision for YOU. Most of the women on here did tons of reading and info. gathering, and you'll probably want to spend time doing that also. I've come across a few on here who did not take the Tamox., but they seemed to have special medical circumstances that did not apply to me.
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Oh, and michele37, you have asked elsewhere about chance of distant metastasis. Have you had the OncotypeDx test? It will give you an individual percentage of possibility for that over a 10 year period, but that percentage is even WITH the use of Tamox. Mine was 12%. Without, it must be somewhat higher.
The OncotypeDx is for ER/PR+ women, with no node involvement. It's also now a standard at predicting whether chemo would have any advantage for you. Ask your Doctor about it, if you haven't yet.
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Hey Middies!
Just want to wish you well on taking the T, elimar. I've been on it now for two years and about four months.... I'm one of the vast majority who can live their life with the s.e.
I, too, started with the rational that I could always stop.
"So far, so good."
BTW: that's my four word response to near-total strangers who ask me how I'm "doing".....
Someone here taught me that & it's been a good piece to have at my disposal. True enough. Doesn't invite a whole dialogue, but gives the slight head's up -- that there's always more to the story, if the listener has any skills what-so-ever.
Hope that everyone has a Thankfilled-Thursday, or what's left of it.
xx00xx00xx00xx00xx
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michelle--I started on Tamoxifen a couple years ago, and had no side effects at all that I could tell. I got so scared that I was a non-metabolizer that I begged my onc to put me on lupron (ovarian suppression) and arimidex. Now I have hot flashes and mood swings, and actually feel more secure for having the side effects. Of course, I declined chemo, so the hormonal therapy is my primary preventative therapy. There is a lot of discussion about hormonal therapy in that forum--you might want to take a look there, or in the Complementary and Alternative therapies forum. There are some different points of view there.
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I really need a boost tonight. I am getting desperate
Almost a month since my surgery and my pain is so bad I can't walk down the street without holding my breasts. It's actually worse than last week when I did take a short trip out of town for a seminar.
Surgeon says they have no idea why my pain is so much worse than typical patient and said I should see a pain specialist.
My incisions and all are healing well, but it almost feels like they are still open.
I was planning on going to Florida for choca's party but it seems like there is no way I can fly out tomorrow. It was going to be the first big thing I did once I recovered.
Maybe I can fly standby Saturday.
I had so many things planned for this week, and had to cancel them all. (on the bright side PS does say there is no harm in going, since there is no real medical reason for the pain.)
I am really scared there is something seriously wrong with my nerves and this is going to become chronic.
The surgeon seems completely stumped and says she's never had anybody with this procedure in so much pain.
I should be happy....my overall medical prognosis is quite good, there is a good chance I will not need chemo, but right now a month of being disabled by this pain is beginning to really wear on my spirits.
Anyhow, keep your fingers crossed for me, that somehow I will wake up tomorrow and feel better.
This sucks
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Suz NY--please take your surgeon's offer of a referral to a pain specialist! There are a whole list of reasons for pain that occurs longer or more intensly than expected, ranging from nerve damage to emotional and psychological issues. Pain specialists are experts in getting to the bottom of and managing "unexplainable" pain. Medical research has even come to recognize that pain sometimes is a problem of it's own--not caused by or related to anything else--and needing specialized treatment. Over time, pain physically changes the nervous system all the way from skin to the brain. You need to start treating this pain now, before those changes can start, and before the pain can take over your whole life and sap all your energy.
I've been through the constant pain thing, no one beleiving I was having pain, unable to do anything, finally winding up in the hospital and getting a mastectomy to make the pain stop. That pain robbed me of an entire year of my life. No one took me seriously until I threatened suicide. So I know how you feel, and I know sucky the situation is. See the pain specialist--your surgeon has admitted defeat, and it's clearly time to move on to someone who can help.
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Suz, fingers are crossed and sending healing thoughts your way. Hopefully this hypersensitivity will go completely away very soon.
I have to weigh in on the to take tamoxifen or not, little tumor with little invasive component or not, why not give our bodies every chance of killing cancer, I have some pretty sucky SE from Arimidex and have switched to Aromasin to see if there will be any difference, but I personally wouldn't dream of not taking it even for QOL issues because I feel strongly that I want a life even if I am tired, my bones ache and I am so bitchy
I am actually enjoy being mean sometimes LOL 0 -
Thanks for the advice...I did request an app with a pain doctor at Sloan Kettering where I am having rads, instead of NY Hospital where I had the surgery.
I took 2 hydromorphones three advils and a clonozipan so I am feeling much calmer.
I wonder if it could be from using the computer too much?
Anyhow I am going to lay still tonight, and keep my fingers crossed that I feel better tonight.
Thanks for the encouraging words!
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Suz..... I am so sorry to hear of your pain. I have absolutely no insight, but wanted you to know that I'm sending you courage for the journey.
If there's a specialist with insight -- get thyself to that office!!
In the mean time I'll think happy Door County, cheese-curd & fishboil thoughts and send them your way.
You are not alone.
I sooooooooooo hope that you get to Choca's birthday celebration. Say hello to everyone for me. I got to meet Chocs last winter at a lunch for those in the area.
xx00xx00xx
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Thanks faith
cheese curds are magic....I once had a streak that if I ordered the Packers won!
I just am going to think positively and take lots of pain pills and hope for the best!!!!
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michelle,my dx is almost the same as yours. I am gong to throw everything I can at the cancer to try and be in the bucket that says that I have a 92% chance of no recurrence. Because my tumor was small ( 8mm ) I was just sure that I would not do chemo, I would do rads and then 5 years of an AI. Well my Oncotype DX was 25 and it was strongly suggested that I do chemo, it was not an easy decision for me, but I go have tx #2 tomorrow and I will be half through with chemo. I do not know at this time which AI I will get but I will probably start on Arimidex (sic) and I will just see how I do. I am like most others, especially with a high estrogen, it is my insurance policy the same as chemo. With all the research that has been done on it, I am afraid not to do it. I am more afraid of bc especially somewhere besides my breasts. When you have mets the tx is so much more than trying to prevent the spread of the bc. I don't even what to go down that path. But in the end you have to do what is right for you, because this is all about you and no one else. You do what is best, then don't look back to say you wish you had done it differently.
Suz, sorry you are in so much pain. Get to that specialist and see what he can do for you. I believe in a chemical world these days. I hope you have a good time on your trip, think positive.
elimar,congrats on Friday 13. At least it will be easy to remember when you started. It is an accomplishment to get where you are today. I wish you have mild ses with the Tomax.
2nd TC tomorrow, I will be half way through, woohoo.
Juannelle
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I wish I could fix my "Middle" friends as easy as I can fix Lincoln ! All it takes is an Ice Cream Sandwich........................................
Prayers for healing and relief of pain, Blessings All,
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nebraskagrandma, he is so cute. Aren't grandkids the best things that have ever happened to us. I have two grandchildren, 5 year old Carson and 6 month old Sophia. They are not brother and sister, but Carson loves her like a sister. Carson always has words of wisdom for me. He prays for me each night, that my treatments will make me better. He also told me that at least with my treatments my arms and legs would not fall off, we wouldn't want that to happen, I will just be bolt (bald). He put it in a prospective that even I could understand. When he say me with my little bald head the other night, I wasn't sure what his reaction would be and he just looked and me and said "Well, you don't have to get anymore haircuts, that's a good thing." What would we do without them?
I thought at first that God gave us grandchildren so we could teach them, but I know now that he gave me grandchildren to teach me. I hope I can always learn from them and along the way they will learn from me. They are the best part of having children.
Juannelle
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Suzy NY -
With my MS i have a lot of nerve pain. i also have sensory/motor periphial neuropathy. That has caused feet and ankles to be completely paralyzed so i walk with a limp and my right arm and hand don't swing when i walk, just hang there. I don't know why, 'cause i have almost full control, not quite. I was in a wheel chair for a year, but one day, things just connected, grabbed the cane, and was off it in two weeks. Now i will say, i've broken a few things from falling unexpectedly, bad balance, but the fact i'm walking, limp or no, is a freaking miracle. When all this started, the first symptom, was pain so severe, i was balled up in a fetal position for two weeks lying on bed with Moon laying on my legs, and the pressure and warmth helped so MUCH. I'm sure a lot of you have experienced the incredible ice cold/burning hot feet which will drive you almost insane. finally one day the pain was sooooooooooo bad, that for some reason (kinda funny) my legs started flaying around and jumping and twitching and spasming involuntarily! Scared the hell out of me! If it wasn't so scary, it was so funny looking i would have laughed at the site. Somehow i got myself to the hospital emergency room and i was so embarassed in the waiting room. Actually they very kindly came out and got me out of there in absolutely no time. My doctor was at the hospital in nothing flat (he told me later, he was almost positive i had a brain tumor). neuropathy doesn't exactly fit with MS so it was kind of a diagnostic mess.
After so many neurological visits who merely concurred that i had both but couldn't help w/symptoms my dr. and i decided on the pain clinic in KC. Their philosophy is find out the base problem, fix it, whala! no pain! They couldn't do that for me and they have a policy of not prescribing big time pain meds. bless their hearts, they and they only, who are against pain meds, told my dr. what to put me on for pain and spasms, so i now have a relatively acceptable pain level. Basically they told my dr., lets treat the symptoms for quality of life, and someday they'll understand the brain better and be able to do more, but not yet. I am a huge advocate of pain centers. At least mine. They do all the tests theyre going to do, the day you're there, even if it takes all day. A lot of people come from a long way away. The next month you have the results and most of the times diagnosis and a plan. Mine took a bit longer, but they were so open to admitting, that i was one of a few, they couldn't help, but would give me quality of life. That takes a lot, five different neurologists, saying they were stumped. Bless them. So please go. Nerve pain can be so debilitating that it can throw you into a deep depression, wonder if lifes worth living da da da da da........i know i had those thoughts, but it's like a dream now. They are experts in pain. If it can be relieved without medication they will do so. So go, before you're in so deep that all you see is one very dark cloud that never lifts. You'll be so glad.
Nebraska-Linda?, I feel for you. You know you have good friends, but they're back home. And you married a NY cop! Wow! Grandkids in both places. If you have money, you can travel back and forth and get best of both worlds, but i don't know if that's your case. You're a nurse, correct? I bet you made some kick ass friends back there. I have lots of family in Omaha, from one of my sister's family (6 stair step kids she had). She just sold her house in Omaha and they kept their "winter" place in Florida because the economy had shrunk their retirement so they couldn't afford both. She would have chosen Omaha, he chose Florida. Very hard on her, very. she has good friends, both places, but her kids, etc. are back 'home' and she gets really homesick.
Barbe, I think a lot of us on here, have been transplanted or for whatever reason, are a little short on the friends thing.
I've been reading and thinking. I don't think a place will solve any of my problems. We already know we are strong. Since reading here, I've changed my whole approach to living here. I moved home and realized nobody remembered me and because of my moving every two years, i really don't identify with a lot of them.
So what? I didn't identify when i was moving around either, I just thought i had a home-town, and now i realize it's not the town, it's family. We're spread out now. This is the gathering place, because of Mom and Dad living here.
I've started being a little pro-active. I see a lot of the same people every day walking the River Road with the dogs. Everybody stops me to see and touch and adore Moon. Poor Buddy's so shy, he loves the people, just wants them to play w/Moon and let him watch. I'm finding myself being more outgoing and asking people questions. You're here all the time also, are you from here? Where do you work? etc......
When i was following my ex around the midwest, i just wanted to move home. when i moved home, now i want to move away. somewhere in there wouldn't you think i would have figured out the problem isn't a place, it's me. My attitude. My expectations.
I live here, small town, great part time job, a River Road and bluffs that I explore all the time that i missed so badly in my travels. It's here, I'm already living my dream. I finally realized I'm fine here, I just need vacations. Now I know that with my financial circumstances that's an impossibility. But I am the queen at budgeting, finagaling money, creative solutions that have plagued a family of 5 who moved so often, sometimes buying, sometimes renting, depending on what was cheapest and always losing our asses when we sold. By that, I mean we broke even, not that we owed afterwards. In the eighties inflation; that in itself was a minor miracle.
So am i really going to accept that i can't figure out a vacation once a year just b/c of no benefits and no leave pay? Hell no. I just gave up for awhile. I'm ashamed.
So to sum up. I'm in the town of my dreams. In the winter, dogs go to cemetery and run free. All other seasons, River Road. I know this town and it's bluffs, caves, scary houses and really really cool spots like the back of my hand.
If I want friends, then it's up to me to make them. Only person responsible for my happiness is ME. I need to visit NM, AZ, MT, all the places I want to go. I went to Ireland and loved it when i had $. How many people can say that?
So ladies, thanks to you all, and your insights, I've realized my problem isn't money. It's me. i have control over myself. From the bottom of my heart i thank you, really. Your unconditional acceptance as i've stumbled along on this road of self discovery which had me at a dead end, is now a freeway with a million off ramps that lead to country roads.
That's what is so special here, and i guess it comes from all of us being open and honest and risking rejection even if it's just over the computer. From the computer, with real true friends, to in person and whatever i find. I'm going to have to risk in person, what i risk online. All this i learned from you. WOW!
Elimar, for some reason, i keep coming back to wondering - do you have any idea what you created? The relief, help, joy, tears for ourselves and others. For the first time in my life, I know each of you are there for me. And you are real. This I know because of how open you all are. I feel like something guided your heart and your fingers in creating this FORUM
. How does it feel to know that you accidentally helped, well, we're up to almost 1300 posts in no time.? Did you have a clue? I wonder if each of us have unknowingly done the same at one time or another, or maybe in the future, and we might not ever know. Really nice, peaceful, happy thoughts i'm having in the middle of the night.
Vaya con Dios for you who believe, and if not, peace to you within yourself. Thanks all.
Marian
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Michelle, I passed on hormonal meds, had just experienced peri-menopause from hell and was absolutely not going to take a chance of doing it again., and I am blind in right eye and will never take a chance with a medication that can have visual side effects. I must say I have often questioned my decision, but I am a major procrastinator. Is a hard decision, try to be comfortable with yours.
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Marian, That was a wonderful post and I hope you have a wonderful day. I think the key to happiness is within ourselves and it sounds as if you have found it. Dogs are great ways to meet people. I am the one the neighbors always ask when something goes on....why are they moving?, what was going on at the end of the street the other day?, etc. Not because I am a busy-body, but because I know all of my neighbors by name just from back when I used to be walking the dog twice a day. Yes, Elimar did a good deed for all of us. When I have a down day or need to complain, I rush home to my computer because this is where I get understanding and advice and can stroll down memory lane and you know what I am talking about.
I will send you a PM about Ireland. I was fortunate enough to travel there also and loved it.
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Thanks moonbuddy, for your compliment. I began the thread when I was quite new, and just did not see a "peer group" at the time. The IDC thread didn't have much "socializing" in it. I am glad to see after several months, this thread has stayed on track with my initial vision of providing Info., Support & Humor. I've learned a lot so far, but one question remains unanswered ---
Starting the Tamox. today -- Friday the 13th, cause I feel "Lucky."
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Happy Tamox Day to elimar
TODAY IS FRIDAY THE 13TH NOVEMBER 2009
Did you take your Tamox yet?
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The bottle is sitting on the kitchen counter. I'm going on the schedule of 10mg. twice a day, so I just thought I'd stare at the bottle a while and take one after dinner. Like an after dinner mint.
I like my MedOnc., but I am starting to see some failings. He seemed stunned when I ask about the CYP2D6 (Tamox. utilization) test, and said they did not even do it but he would check into it for me. What century is he from? I received no guidelines about drug and food interactions, but just from reading these threads, I know there are quite a few things to be avoided. I know that some doctors get upset, still, if you make statements like, "Well, I was reading online..." Yet some of these doctors are disturbingly short on the info. that they, themselves, give to you, so how can they not think our inquiring minds would seek out other sources?
Seyla888's pic shows a blister pak. Luckily, mine is in a bottle. I'm sure I am not the only one on here who has run across some of those maximum security blister paks, that are near impossible to break a pill out of. I expecially hate when my allergies hit, and I'm trying to claw one of those paks open whilst sneezing my head off. After making no progress, my frustration usually results in me gouging the pak open with some cuticle scissors. It's ridiculous how tough the backing is on some of the paks. Good thing I never have had trouble with the child-proof twist off tops on meds. (They didn't hamper my kids--after age six--much either.)
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Juannelle
Thanks so much for my morning chuckle ! From the mouths of Babe's ! That Carson is a dandy
Lincoln was born one month before my DX he has been my greatest blessing.............Marian,
Wow I had no idea you had been through so much, no wonder you are so attached to those dogs. Isn't it amazing how faithful they are and how they are right there in our space when we need them and sometimes when we don't need them !
How strong you are, and I'll bet you never thought that way about yourself back when you were fighting to walk. look at you, coming such a long way physically and mentally. You go girl !
Elimar
I agree !! Kudos to you
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