Can we have a forum for "older" people with bc?
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Having snow flurries outside which at 38 degrees will probably turn into rain but even if not could not stick to the ground.
Spar.....I am definitely in love with Chee Chee. Of course my problem is -- if it looks like a dog -- I love it....and if it looks like a cat -- I love that one too. I jokingly tell one of my friends here....I'm 64 and have spent my whole life so far looking for an ugly cat and have not been able to do it.
Just checked and there is more snow coming down but there is some sleet in it too --- some of those big flakes had a bit of a bounce when they hit the ground. If it cools fast --- well some of this could stick but I don't think we would still get that much for accumulation --- which is about the time we'll get 8 inches --- hope not till daytime if that happens.
Life is not being too exciting right now and I have to try and get some work done and a shower to go to my chocolate meeting tonight. Hope you are having a fantastic day. Love to all.
Hugs, Jackie
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Jackie,
You have a CHOCOLATE meeting? An actual official gathering to eat chocolate? Or to discuss its fine qualities? Or share recipes? Count me in! I guess this is the antithesis of weight watchers. I would go out in the snow for such a meeting.
Noted the nail polish, Spar. Nice touch. Who painted them? It's hard for me to get to some of the little curled toes. They get a swipe.
Good news for Ritajean... sunny and bright. Cool breeze but not enough to discourage being outside, even in north Florida.
More whale tales... a beaked whale, very rare, never seen near shore, beached itself and died south of here. Quite an event because they are just not seen even by expert whale people. So odd that these ocean mammals beach themselves to die,,, like they don't want to drown or something. Very sad. Porpoises do it too.
A 50year ago friend of DH's is here so better go be social. They are busy walking down memory lane and I am supposed to be lookiing up a recipe for french onion soup. So better go make it!
pam
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Spar...please put Chee Chee on the first plane for UK !! she's lovely, but then she's a Daxie, so she will be, although ANY dog does it for me !
Melissa SV, so sorry you're losing your hair. It must be terrible. I didn't do chemo, so can't comment, but know I would have been mortified if my hair all went.
Connie, hope your situation resolves soon, what we will do for our children ! I know if mine, or any of my grandchildren call me, I will be there in a flash.....well, as fast as I can flash these days.
I had my 17 yr old g/son and g/f call on me today, just as I was going to get cleaned up and go off out food shopping for a couple of hours, so was caught looking a wreck ! These young girls keep me on my toes, and this one is doing a course in dance and beauty at college, and must be a size 0 !!! Its the first time g/son has actually brought her to see me, I've met her at family gatherings, but she hasn't been here. G/son took her on a tour of the animals, while I made them some tea, she was thrilled to bits to see the animals close up, and be able to touch them, and was really in seventh heaven to see all my dogs dashing about the kitchen. Difficult to know whether to try and get to know her better, or will she be old news soon !!?? They have been together 5 months now, but you never know ! G/son is really smitten by her, its his 1st g/f . 21 yr old g/son only had the one g/f, and they're living together, and going on 5 years now. I do love the youngsters, especially when they feel easy enough to just call in when they want. I have 4 g/sons, always wished they'd been g/daughters ( I get on better with girls, we can always go shopping ) but now I seem to be getting a whole crop of 'g/daughters'.....so don't complain about the boys !
I had a day away from our pneumonia problems yesterday, as it seems to have started to clear up without anymore deaths . Just got a bit overwhelmed with illness, DHs siatica, my slipped discs, and then the cows being ill, I also noticed another problem in the cows, a disease called New Forrest disease, caused by a bacteria, which can blind them. The eyes start to go white, and look as if cows (and sheep) have cataracts. Luckily I had the right ointment to put in their eyes, but the catching of them and treating of them is bl**dy hard work when you're knocking on ! so I just took off for an outlet shopping centre. Still have half of what I bought stuffed in my car , haven't had the opportunity to sneak the bags in yet ! DH out for the day tomorrow, so will unload, and hide away in wardrobe then !! DH is still spitting feathers about my Christmas spending, so don't want to upset him ! Among other things I got 5 pairs of trousers, one expensive pair, should have been £175 ($283) from Jaeger, one of our better shops, they were on sale at £75 ($121) I would have bought 2 prs, had they had them in black (I got French navy) but no black left. I usually buy 2 or 3 pairs a year of these. Always have to be taken to pieces, and slimmed a bit in the leg, and taken up about 5". Being short I don't look good in wide leg trousers. I also got 4 pairs of cord jeans for $48 for all four, just to knock around the house in. Also got 3 prs of slippers, and 4 prs jim jams !! (They'll last me all year.)
Pam, you are lucky whale watching, didn't know they came off Florida to breed. Knew they went somewhere, just not where ! We very very rarely sight a whale off UK, dolphins now and then in the south, and west are about as exotic as we get ! I know I was VERY taken with the manatees in Florida, would have spent the whole holiday looking for them if I'd been alone.
Isabella.
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THANKS FOR ALL THE LOVE.
I think I have started to realize that this is her problem and she is strong and will deal with it. It was really funny when several of her friends made reference to what a "BAD A** MOM" she has!!!!! Because when she hollered she was "SCARED". I went, in the middle of the night to be there, calm her and cause it to be fixed. At least for that night.
We really are very close, DD and I. We look alike, talk alike, but there are 30 years between us. I'm glad that we're close, that she shares with me the good and the bad and the baby. I know she's got an unpredictable and bumpy road ahead, but she's finishing her 1st degree and is shooting for her Master's and I'm confident that she won't let this stop her. He, on the other hand, is gonna be hurtin when this comes back on him. When he realizes that he could have taken the higher road and risen above the facts of his upbringing. Many men have. Obviously, this isn't one of those men. We thought he was. It's losing the trust, you know? When it's gone it's gone.
I will be seeing a new Doc tomorrow. His speciality is Pain Management. for my back. I'd like to think he can offer something new. But I'm not counting on it. I've read and researched and I know that this too, is something that I have been and will continue to 'manage'.
BRIGHT SPOT; An old friend, who works hard and has her own issues volunteereed to come over and help me get my house cleaned!! Liz came over today and cleaned up, for me, for free! That Rocks.
It was a beautiful winter day today, without the wind.
~Connie
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StillVerticle - OK the hair is gone, however we still love you. You are still who YOU are whether you have hair or not. You're grateful for what you do have.....a beautiful day, helping the homeless and a warm bed and pups. That's why YOU are special. Just take one day at a time. Tomorrow is supposed to be a beautiful day in the Ol' Tarheel State. Enjoy b/c it's beautiful where you live. Sleep tight. Chris0
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Chevyboy - The Black Bra - FUNNY!0
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Love your shopping stories, Isabella. Who doesn't love a bargain! But having to alter $121.00 pants is no bargain :-( I went shopping with a "petite" size friend... I did not know how hard it is to find clothes to fit. Pants are so long now. I am 5'7" and sometimes have to hem them up myself! But I guess the designers think we are going to be wearing high heels with our jeans. :-(
To be factual... the whales do not "breed" (actually copulate) here. I think that happens in the north Atlantic. The pregnant females come south to have their babies and get them off to a good start. I don't know where the males are while all this is going on. Typical males.
There is a spring here called Blue Springs. The spring water is a constant temp of high 60s. When our weather gets really cold, like it has been lately, the manatees move through waterways and end up cuddled up in springs where the water is warmer. So Blue Springs right now is FULL of manatees. You could practically walk across the water on their backs. It is a state park and people flock to see them. They will stay there til the weather warms up, then they'll spread out all over again.
Manatees love to drink fresh water and will come to a water hose... although you are not supposed to interact with them since they are endangered. They also like lettuce to eat.
OOOhhh, I am too sleepy. Gotta go to bed.
hugs all,
pam
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Connie....how fantastic. Not only the good news of your DD who will probably get it together in short order, but what a wonderful friend. I would have come over and done your house for you had I been closer. Southern Illinois is just a little too far away from Georgia. Don't know if I mentioned...but I cleaned houses for 9 years in Santa Barbara, Ca. So many of my jobs seem to last for 9 years --- there is something magical about that cycle I think. Three is a lucky number and 9 has 3 segments of three. Hmmmm, I'm at my present job for about 8 years now....thinking, thinking, thinking....but I have some time. Anyway, I did enjoy what I did though only meant to do it for 3 months or so while I decided what I really wanted to do. Then went to McDonalds after that and worked there for 9 years as well ---- another case of I'll do it for 3 months while I figure out just what it is that I want to do. I think I'm to the point that I don't know what I'll do -- ever --- but whatever it is I will more than likely do it for 9 years.
Pam -- so interesting about the whale. It sounds something akin to cats. Most of our cats -- the ones that have been confined to the house for years try and get outside when they know their time is near.....read somewhere...or maybe someone told me --- they do not want to die where they lived. Or maybe it is something more instinctual -- that they do not want to die around their litter mates and upset them. Animals that have lived together do grieve for the other when it passes. Sigh !!! So much we are not sure about. Perhaps that is why the mammals come to shore --- dignity of a private leave-taking so as not to upset others. Some of the animal kingdom are so civilized. .
Well, need to get some things ready for work tomorrow. See you all later.
Hugs, Jackie
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LATE NIGHT DEAREST PODS-LONG DAY AND TOO TIRED TO GET TO EVERYONE'S POSTS. Love you all and want a clear mind to read thru all POD events!!!
WONDERFUL DAY! I dropped in on Betsy, the SW for the ACS here on the Outer Banks. I was floored because she pulled out shelves of "Rachel Welch" designer wigs (never wore a wig in my life unless drunk!) This kind woman spent the whole day fitting me with wigs and head covers. She gave me two gorgeous wigs for free along with several headcovers. WOW! How cool is that?!!!!! And they look like real hair! I could use the RW body-ohh big bonus on being bald. This A.M I discovered it is the only patch of land on my body that is NOT wrinkled and hanging around my ankles!
VERY DEPRESSED 2 NIGHT. I meet with ONC on Thursday (today?), for the 1st time since my first chemo went so horribly bad. I do not know what to say to him. Chemo damn near killed me. But, I know he will simply discount me and likely patient dump me to cover his ass. Docs here dump patients who do not have a good treatment exp., especially if the doc did treatment plan! I do not trust him-especially since he, nor anyone returned urgent calls from my Dad and me for 4 to 5 days while I was so sick. GET THIS!!!!!
I have made the decision that I will not do chemo again (three more treatments). I don't trust ONC to put me thru that again, nor do I trust the treatment given my reaction to it. I know this in a monumental decision as no chemo for me is not good. Might go ahead with the 35 RADS but pretty useless w/o chemo. Need to put it in God's hands. I am still suffering terrible SE's. No energy or will to look for another ONC and try to start whole process again. I am just so "over" all of it and I feel serene with my decision right now.
So, for this first meeting, I am taking suggestions from the mighty PODS and will print out all of my comments from BC board, staple the pages together and dump them in his lap-then head out for ice cream!
Isabella, my Lord, I hope you know that you are an incredibly strong, witty and beautiful woman!! Good grief, I would have Bar-B-Q'd cows, chickens and DH by now just to get some peace!
And Spar, OMG a photo of the "bone stimulator." Looks like you need to hook it up to DH!! Is it working? Photos of DH and Chee are priceless.
Jeanette, E. Clapton is on the Television singing the "57 Chevy Song" (no coincedences)...."I've (WE) got a ROCK AND ROLL HEART!" Melissa, get on the Board soon!! And Connie and Jackie, I hope the family dramas pass quickly. Pam, OMG, the manatees. I WISH YOU HAD PIX of them. Chris, I just love ya' gal! Katheen, stay out of the catnip! Jackie, A CHOCOLATE MEETING???? WHAT THE HECK IS THAT AND I WANT SOME! Big smooch,JO.
OHHH, this is one tired POD. We need to post a "TREE POD" to keep track of all!! If I missed anyone, I will catch up on posts tomorrow
! No POD left behind! SV0 -
StillVehicle ... what a terrible experience. I hope you find another oncologist who is more involved in your treatment and more compassionate. Great news about the wigs!
Jackie ... you and I are kindred spirits! I can't pass a cat or a dog without stopping to pet them. Once, I was driving back from lunch with a friend when I spotted a Basset (my favorite) and did a u-turn and parked just ahead so I could meet him! My friend didn't know what the heck was going on. Another time, on my way home from work, I spotted a woman with 4 Boston Terriers - I pulled over and got out of the car to see them (I grew up with this kind of dog). Of course, I am the same way with human babies!
Spar ... LOVE the pics - what a cutie (dog and DH).
Rita ... I am so jealous - hope you are having a blast!
To all my other dear pods - love ya!
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StillVerticle,
Your chemo experience has been horrific and the staff's lack of communication unconscionable. Before you make a BIG decision why not have a second opinion? Your stats are so good (your signature line) I am kind of surprised you are even doing chemo anyway. My docs were adamant I did not need chemo even though my oncotype score was in the intermediate area. They said Arimidex was the most critical part of my treatment plan.
I certainly don't mean to undermine your confidence in your doctors or your plan. But just a thought.
pam
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StillVehicle - Pam just said what I was thinking (we are a clever bunch here!) Chemo makes you sick and tired. If you were more so than expected, then it certainly would be decent of the oncology people to communicate with you. Have you had a sit down chat with them yet? If they have a reasonable explanation and you feel OK with them, maybe continuing wouldn't be so bad. Or maybe another oncology crew would be better if there is one nearby. You have already got through the hardest part - losing your hair. After that, for me, there was a whole lot of tired, considerable time with my pillow, my couch and some really cheesy tv shows. The first week after chemo was the worst and then it got better til the next one three weeks later. Now it is just a blur even though most of the time I carried on with what was important to me.
How excellent of your friend to come up with wigs for you! Wearing a wig that was like my own hair was important to me. Now that I ditched it and have a really "edgy" short hair style people who didn't know what was going on are finding out or walking right by me because they don't recognize me. I can choose whether to talk to them or keep on going depending on who it is and how I feel at that moment. I am 5 months from my last chemo and now don't mind talking to them about it. My family and good friends already knew and have been super supportive.
It's a mighty big decision to keep on or not keep on chemo. I like the feeling of knowing that whatever happens next, there is no doubt that I did all that was possible to stay here on the planet. I'm not done yet!
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OK I STOLE A FEW MINUTES OF "COMPANY TIME" AS WE SAID IN THE 60'S "DAMN THE MAN" , FRANKLY I HAVE MISSED ALL MY FRIENDS HERE AND JUST KNOW FROM PAST HISTORY THAT THERE ARE LAUGHS AND COMFORTING NEEDED AND GIVEN HERE. i CAN'T STAY LONG A PERSON GOT FIRED FOR BEING ON THE NET DURING OFFICE HOURS AND I CAN'T SAY DIRECTLY WAY BUT HERE IS A HINT- THINK OF A NOT SO FUNNY BLACK BRA STORY WHICH BY THE WAY WAS A HUGE HOOT- OH A BLACK BRA HOOTER! LOL ANYWAY JUST DROPPED IN TO SAY TO EACH OF YOU....
TO JACKIE HOW HAS MY HEART ( I NEVER SAW A DOG I DIDN'T LIKE)
TO SV WHO NEEDS A WING TO LIFT HER
TO SWEET KATHLEEN WHO WILL WORRY FOR ME AND IS MY MIRROR
TO JO WHO KEEPS THE PRAYERS COMING
TO OUR KIWI SISTERS WHO DO SO MUCH CARE GIVING
TO RITA AND CAROLE WHO REPRESENT US SO WELL IN THE SPORTS ARENA! GO TEAM!
TO ALL THE NEWBIES I HAVE MISSED IN THE LAST FEW DAYS
TO SPAR WHO GETS "AUTO AND REGULAR STIMULATION" FORM DH (LOL), MY HIKING BUDDY
TO PATOO THE SMILER
AND TO ALL MY NURSE SISTERS, DAR, SPAR, GOD KNOWS WE SHOULD BE INCOGNITO
TO ISABELLA- YOU SCREAMER- MY MAKE ME PEE MY PANTS ON OCCASION!
IT WILL BE DAYS BEFORE MY COMPUTER IS SOLVED- IT MAY BE DEAD-REALLY
SO I WILL LEAVE YOU WITH THIS;
" I SAID A PRAYER FOR YOU TODAY
AND KNOW GOD MUST HAVE HEARD
I FELT THE ANSWER IN MY HEART,
ALTHOUGH HE SPOKE NO WORD.
I DIDN'T ASK FOR WEALTH OR FAME,
I KNEW YOU WOULDN'T MIND.
I ASKED HIM TO SEND TREASURES
OF A FAR MORE LASTING KIND
I ASKED THAT HE'D BE NEAR YOU
AT THE START OF EACH NEW DAY.
GRANT YOU HEALTH AND BLESSINGS
AND FRIENDS TO SHARE YOUR WAY.
I ASKED FOR HAPPINESS FOR YOU
IN ALL THINGS GREAT AND SMALL.
BUT IT WAS FOR HIS LOVING CARE
I PRAYED THE MOST OF ALL.
LOVE YOU MIGHTY PODS!
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Still V. I did not get time to post anything this a.m. before work -- this is coming late then. Like Pam, I would not want to undermine anyone or anything....but your oncology team should be ashamed for calling themselves that. No true care or sensitivity is what it sounds like to me. As well, I think cancer/chemo patients should have all calls returned as promptly as possible by someone in the office.
At any rate, I hope you will get a second opinion before a final decision is made for sure. Done correctly -- meaning with care and diligence -- most people should not have too much of a problem with chemo as the se's drugs for same are so good now. I'm not saying you need chemo necessarily -- just that your experience was far from what most people actually go through. Even mine -- where I spent the first four txs losing all stomach contents was still far better than what you describe. Do please think about a second opinion because you have undergone one of the really hard to handle side effects which is the loss of your hair. It is your decision and I know everyone here will respect that. I'll be thinking of you hoping it all goes well for you.
Melissa...even though you are off the computer. How fantastic to hear from you....we all needed our Melissa fix.
Hugs, Jackie
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OHHH LADIES, I JUST LOVE YOU SO. THE CLINICIANS METHODICALLY WENT THRU ALL OF MY CHEMO DOSAGES AND TREATMENT AND ADMITTED THAT MY BODY REACTED IN A WAY THAT SOMEONE FOUR TIMES THE DOSE I GOT WOULD REACT. In other words, they dosed me 4x more than they calculated if I am following their logic. Not a lot of comfort but docs got to see the damage done to me all agreed that my SE's represented a dosing of TC 4x than what it should have been.
I don't want to waste my energy getting angry right now-this is so bittersweet and I do not want to be flip about this/Iknow it to be a critical mistake. And I need to be clear and sure aabout the facts bec this is important. I am more relieved to know what happened and that they admitted to it. Chemo is stopped until March until my system is clear. Doc team is doing the blood work needed to check all bio systems post this chemo episode.
SO, I am trying to be positive and know that it was not me-that big errors WERE made but that they seem to be owning up to them and trying to correct them. Yeah I took an awful hit but appear on the mend. Not going to make any major decisions about getting new ONC right now as I need to get well first. I just was so glad they seemed honest with me. My Dad, bless his heart, went thru the roof in trying to protect his daughter (me) today and blistered them for what they did.
TO ALL PODS, THERE ARE NOT WORDS TO EXPRESS MY GRATITUDE AND LOVE-YOU GALS ROCK
SVUPDATE: I NEED TO REWRITE THIS POST AFTER LISTENING TO TAPE TODAY BEC IT IS IMPORTANT THAT I GET THIS RIGHT. I DON'T EVER WANT ANOTHER WOMAN TO GO THRU WHAT I WENT THRU FOR WEEKS AFTER CHEMO AND NOT KNOW WHAT HAS HAPPENED TO THEM. I WANT TO 'MAKE FUN' OF THE EXPERIENCE ONLY BECAUSE THIS HAS SCARED ME SO BADLY AND BEFORE THE MEETING YESTERDAY, I TRULY THOUGHT I COULD NOT DO CHEMO AGAIN AND HAD 'DEATH SENTENCE' PRONOUNCED. SO I WILL REDO MY POST WITH CLEARER EXPLAINATION (I HOPE) NEED COFFEE SV
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Damnit Melissa! I also sent you a private message, but I see you on here also! And again, I am soooooo sorry you had to go through this! But you know, maybe we will all learn something from you & your treatment! I'm glad you aren't mad at them, because I'm mad enough for all of us! And I understand about you not wanting to change anything...Also glad everything is stopped until at least March....So after your system is "cleared out"...you should ask a lot more questions about what, if any effect, radiation would play in this, or for that matter, any other medications you take! And yes, it WAS a critical mistake! I'm just so sorry you or anyone else I know has to go through this! I'm glad your Dad was with you! Glad he let them know what was on his mind!
You KNOW this must have been serious to them, to have all the other people in there with you! And someone should take the blame, if not a few of them....After all, this is your life that you are fighting for here!!!
Sorry, sweetie, but I know you can handle this too.....going through what you did, has GOT to make you stronger still....I just thank God you are STILL VERTICLE!!!!! Love you! Jeannette
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Wow. I didn't have a chance to check in for a couple of days. Lots of discussion going on! Can't possibly respond to everybody. Rita, hope you have a wonderful FLA trip and bask in sunshine. Will you be able to squeeze in a game of golf? Isabella, your life is truly amazing. You have a gift for description. I could imagine myself walking among those cows and hurried outside the barn! Loved the account of boating with the whales. So neat! DH and I went on a whale watching boat trip up in Port Townshend, WA, in summer of 2008. Saw pods of Orcas whales, which are black and white. Funny thing was there were more humans watching the whales on a big fleet of boats than there were whales watching the humans!
I'm 6 mos out from BMX and am enjoying the "new normal." Went for apptments with BS and PS yesterday. PS wants to "tinker" and improve symmetry of the reconstructed breasts, but I'm coming up on birthday no. 67 in March. As my BIL says, we're playing the back nine. Not sure I'll go back into surgery if the PS can't improve the rest of me, too!
Healing vibes to Spar and all those who are in a healing phase. It's so wonderful to be "healed."
Hope everyone has a good evening.
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StillVerticle,
Are you saying they gave you four times the proper dose of chemo... or that your body reacted four times the normal response? If it is the first, that is a terrible, actionable error with possible long term repercussions. An apology is fine but not enough to assuage the potential damage to your body. You need to pin them down about what happened.
I hope it is that your system, even given the proper dosage, reacted with greater sensitivity than normal. Even though you were terribly sick, I would think that would be less dangerous.
Wishing well for you... and good care for you.
pam
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Pam, they said that, given the SEs my body showed, I only needed 25% of what I got in the TC chemo treatment. But in the tape they also felt the dose was miscalculated. Either way, I got way too much. They are offering me Chemo because I cannot get off of Prempro right now and therefore cannot take "Tamoxifan?". Normally, the treatment would be radiation and 5 years of that pill that blocks ER/PR receptors. I hate this crap because I get so confused trying to sort it out let alone write about it. I think that is right, SV
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Melissa I too am so glad that you chose to go ahead to the meeting. At least you have gotten some important answers as well as admissions about the ball being so BADLY dropped by your oncologist and team. Glad too that there seems lots of time to work thru all that happened while you get well. All the results that come should assist you to figure out what you want and need to do -- when you are better.
I think you are right to let your anger go for now. It is hard to be angry anyway when you are breathing a sigh of relief that someone has VALIDATED you and the problems you had to try and solve alone. It really is not always the content -- it is knowing we have been heard finally and understood. I am so glad as well that you were here so we could do some hand-holding, praying and well wishing to try and help you make it through.
Long day at work so I'm going to go hit my recliner. Like Pam I an wishing you well as hard as I can.
Big Giant hugs,
Jackie
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Something for you Melissa:
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~Leo Buscaglia
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Good morning Mellissa, SV!.....You know, I was thinking, that MAYbe they are trying to cover all their bases, thinking that you might bring a law-suit against them. To have the "staff" present at your "meeting" means a lot. Did they think your Dad was your attorney?
And with your recorder, going, they probably dropped their teeth! It would be interesting to "hear" what they say when you are not there! No matter how much they apologized & admitted to wrong doing, it still happened. And it was life threatening!
Are you meeting with them again? Will it still be the same Onco team? I would make sure that if you proceed with treatment, that a complete "staff" is present to plan & execute the treatment! This WAS very serious...xoxoxoxo Jeannette
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Melissa - so good to "see" you even for just a minute! We miss you!
SV-Melissa - did they give you four times the dose you were supposed to have? I agree with Jackie - at the very least you were validated. Its so hard when you are going through something like this and made to feel like either you are a wimp or crazy. They should be on their knees apologizing. And hip hip harrah for your Dad!
Jackie - I just love Leo Buscaglia and the quote is so true.
To everyone who is healing, special vibes to you.
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Good morning Sis Kathleen. Glad you liked the quote. I am such a quote lover. Guess it represents to me the things I so WISH I could say that never quite come out.....so I have to borrow what someone else was able to bestow upon the world at large.
Sounds like we might have lots of snow showers today -- not sure though and don't know if it will cause any real accumulation. Sounds like it will go more south of St. Louis and we are east. It's dry and very cold.
I got up early to get to my computer before work as I am going to a small get together tonight after work. I'll be on here late tonight --- if at all, though I usually can't stand not at least checking and reading....even if I don't post.
Hope you all have a really fine Friday.
Hugs, Jackie
All the statistics in the world can't measure the warmth of a smile. -Chris Hart
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GOOD MORNING WISE PODS! I chose to delete my posts of the meeting with ONCS and Administration yesterday after I reread them on the Board today. THANK YOU JEANETTE AND ALL because I need to understand what happened to me. I need to be able to convey accurate facts in this journey (info on tape of the meeting w/ tx team) so that NOONE else has to go through this!!! In my first review of the tape recording of the yesterday's meeting, I am trying to understand the extent of the errors made BY THE ONC TEAM and why my body reacted so profoundly to the Chemo dosing they did give me. There appear to be a combination of things going on (perfect storm) and in reviewing the tape I am not sure I can sort it out. BUT, I think it critical to try, for hopeful benefit of all and anyone who is having a tough 1st chemo. I am really upset right now and I need to do some chores to get some frustrations out before I write final 'thesis' on this. It just is very important to me to record this to best of my ability (I am still running on two cylinders) and to have questions answered. Important to me as I know all of you (and me) were so very worried about the apparent lack of true response of my ONC team to some life altering/threatening issues from my first chemo. Right now, I cannot get my head around this. I wrote blindly yesterday as I was so excited to finally have answers to what was a "critical effect of chemo" on me. With my brain still limping along (this is like I have a brain trauma), I am having a hard time processing in an objective way w/o scaring the crap out of all and w/o being a drama queen. Love you all very much and will write 'progress notes' 4 the Boad after doing the laundry!!!!!
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SV... I'm so interested in hearing more about your frustrations. You and I have the exact same diagnosis. Nothing about chemo has been mentioned to me as yet. I had a bi-laterial mx on 1/5/10. Unless my OncoType DX comes back in the high range, I'm assuming I will proceed with hormone therapy alone. It unsettles me to see your/my diagnosis the same and chemo was recommended for you and not to me. Which is the correct protocol? I don't want to take chances, but also do not want to do chemo unless it is beneficial. Confusion, confusion. After you have gotten all of your frustrations out, and if you have the time, would you let me know if you have any thoughts as to why chemo is not being considered for me? BTW, I am 61. Perhaps that has something to do with it. ???? Thanks. Karen (ThereIsHope)
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Regarding medical mistakes: if your hospital has a patient advocate, you might give him/her a call. And please do get a second opinion!!! My gyno feels very strongly about that, and I still feel terrible that it never occurred to me to get one for my mother severall years ago. She had a scan for abdominal pain that showed a mass on an ovary. When the surgeon operated, the mass was gone but he removed both ovaries and I think her uterus anyway! Not that she needed them at age 80 something, but she had a really painful recovery since the strong pain meds made her throw up or delirious. All the best to you all!
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Still V -- wondered why you did the delete and glad I was able to read before you did as I would really be confused now. Wish you had a medical/nurse friend who could go over a lot of this material with you. It would probably make a big difference in your understanding.
There Is Hope -- hopefully your oncologist will be able to tell you in an easy to understand way why he is not having you do chemo. There could be many reasons -- and none of these treatments are a one size fits all. I had to have a Muga scan of my heart ( you have to register a certain number ) or they won't do some of the harsh chemo on you. Still it is your body and you should be given all information and be able to "assist" the Dr. in determining best course of action. Please ask as soon as you can.
Hope you have all had a good day. I'm getting ready to finish up work and glad my two day work week is over. I need to work but sometimes those two days are a bit intrusive when I have a lot to do. See you all later.
Hugs, Jackie
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Yes, that is right, DaylilyFan! My Mom drove to the Doctors for a check up for her "heart failure' which she had been taking pills for 2 years....When she GOT there, they said something like "well this doesn't look right"...sent her over to Emergency, THEN told her, "well we think you need a triple by-pass"....She panicked, called my Dad, he went there.... They took her by ambulance to San Francisco, did surgery...(she was 80 damn years old!) And she had a stroke during surgery...never came out of it....I could have killed them all. They took my Mom, & she could have lived her life without any surgery!
So Melissa honey....just don't let them do anything to you....not until you get a lot better, & can think clearly...You SOUND great, and like you know exactly what you are talking about, but you don't have to hurry with anything.
And yes, you are right! It sounds like a "Perfect Storm" for sure! And Daylily is right! If there is a patient advocate ANYWHERE, you should talk to them!
When you THINK of something, write it down....save all of your records, your posts, and anything else you can find about your treatment...Save it for when you can put it all together, & then figure out what you need to do. Just rest for now....no hurry....just get well, & talk to us anytime you want! We love you....Jeannette
Just a note.....I'd sure like to sue their asses off if it was me!
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