Can we have a forum for "older" people with bc?
Comments
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Jo-5, Mommarch, Jackie, Jeanette, Panama. I am trying to get the "cast" all straight. Who lives where, who has had what and for how long. We are an odd sorority. I wish I had a stand up paper doll for each of you. I'd write on the back all the answers.
Jo-5 I am sorry for your LE. I understand it is an unkind SE and difficult to adapt to.
Panama, I have written down what you said to pose to my BS tomorrow morning.
I have a question: I imagine that all of you had rad. He is going to suggest that tomorrow plus some hormone therapy.
How many weeks did you have radiation? I have 2 events the end of Oct.
I know he'll tell me tomorrow but I am eager to know.
Is this "newbie" a pest. You've all been wonderful.....does anyone want to yank my hair?
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Hi mommarch, Yay.....for you getting to work and being ok. You will learn what series of ups and downs ( which are yucky days, ok days, good days ) go with your chemo and something I always found rather amazing was ..... the day I would get up and know that it was going to get better and stay that way until my next infusion. I often could not eat much of anything....a spoon or two of something for four or five days......then I would get up that morning with a craving for tuna on toast...and I would fix it and eat it all day.
My thought was....isn't this great.....I took poison chemo and now I'm ingesting mercury...such a winning combination. Your body usually tells you what it needs --- rest, liquids, foods, etc. If your tummy is not doing well go to white foods. Eggs, bananas, mashed potatoes, white toast...it is just easy on the stomach and doesn't cause too many acids to swirl around....digests easily.
I don't know how well I could handle your heat....well, at my age. I was in San Antonio, Tx in my early years and it was not a problem.....I know part though is being acclimatized to what you have going on.
Hang in there....so far, so good.
We are with you and will stay right here.
Hugs, Jackie
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Ah Nancy, your're back....good for you.
Radiation....the amt. you are prescribed is generally figured out from your path report. Don't get distraught but I had 6 weeks or rads ( radiation ) and one week of boosts....for a total of 7 weeks. This was due though to my path report as I had two different tumors....same breast.
Rads are not too bad for most people....naturally there are exceptions, but most say that it is boring. It takes longer to position you almost than it does to get the application --- and it is daily except for the week-ends.....so tiresome to go every day. Some people get tired.....I only did once....the rest of the time....I walked for a few blocks and just kept everything flowing.
You are not a pest....just following your natural inclination to be in the know and somewhat in charge of this event that has foisted itself upon you.
I envision that soon enough you will find someone to comfort and feel good that you can.
Healthy hugs,
Jackie
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When you have a choice between being right and being kind - always choose kindness. ~ Wayne Dyer
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Morning gals! Hi Marcha! Yes, just expect to feel like a truck ran over you....Being tired just means you HAVE to get more rest than usual! It's okay....And if you have to skip your job once in awhile, just don't feel guilty.
Sorry it's been so hot there! The weather is just so extreme in certain areas! It's supposed to be about 104 here today in Denver, but like they say, "Yeah, but it's dry heat....which means it's still too hot for me! A lot of fires popping up here also, around Boulder....again! Give your Daughter an extra hug today.....
Nancy.....Ha! I KNOW! It's hard to keep everyone figured out....Sometimes I write down names, & a couple little things to remember "who" everyone is, & what they are going through.
And no, you will never be a pest! The mice in my garden are pests, but they're still cute, Ha, ha! So are the little foxes & that Coyote that I saw the other morning.... He just looks sneaky....Lordy, keep the kids & cats in the house!
My Rads were like Mommarch's....with the MammoSite device, but Jackie & probably Jo have been through it all....And they can help you through all of that.
And thanks Jo, for making me remember about how to take care of our arm AFTER surgery! I just don't think about it when I'm gardening, but I at least DID wear gloves this morning while I was shoveling to re-plant some tomatoes.... And keep my nails clean...You know I never thought about rubber gloves for kitchen work! That's a great idea....Okay, I'll keep them handy.....
Panama! How are you doing? So interesting hearing about your experience with your surgery! Let us know what else is new.....
Morning little Jackie! So fun reading what you have to say! Stay cool today!
Love you gals! xoxoxoxoxo
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Nancy, I had my lumpectomy on April 6th and then on April 19th I started mamosite radiation which was 5 days twice a day, do not know if you are a candidate for this or not. I would suggest it to anyone if they are. Before they did my lumpectomy I had a PET Scan to be sure nothing else was hanging out there. Praise the Lord it was not. Good Luck
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Thanks Jo! I had honestly never thought of raw chickens causing problems! I have heard of washing with soap, your cutting boards, etc. after working with chicken, but I didn't even know it could cause cellulitis! I looked this up....
http://en.wikipedia.org/wiki/Cellulitis
And pictures show what it looks like..... You know, I wonder if what I had for YEARS was cellulitis, instead of "stasis dermatitis".....?? They look similar, & even on my right lower leg/ankle. After a year on Tamoxifen, it mysteriously went away....Stasis dermatitis is supposed to be a life-long problem, but mine DID go away! Oh well... So I don't know WHAT mine was now! Sorry about your bouts with cellulitis! I'll be more careful!
Marcha.... Yes, same here with the MammoSite device...but only certain woman can have the device...It has a lot to do with WHERE the lump is, how close to bone, the size, etc. But mine was implanted at the same time my surgery was... Then replaced a couple days later, right before I saw the Radiologist for all the pictures, placement, & fillings....But that device sure saved us a lot of time...right?
Did you get a terrible infection with it? Man, I was on 2 antibiotics for 2 weeks, trying to clear that up! Your body trys to fight any foreign object, & mine went nuts! It's a miracle I didn't get Lymphedema just from that...... Oh and the TAPE! When they took that off, it just peeled my skin off, so another infection..... Oh well...glad I can look back on it all now. Okay, back to work.
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Afternoon ladies --- as little Callie Kat waltzes all over my conputer and tries to wrap herself around my arm. Chevy -- you always say things that just wake up all sorts of thoughts in me. I looked at the link you put in here on cellulitis and it looked like something I'd like to skip for sure.
The other thought was ( despite reactions ) the Mammosite device for doing rads. It can be a huge time-saver if you are able to have your radiation applied in that fashion. Not only was mine boring.....but I had to go stay in a motel thru the week so I could go daily --- come home Friday after rads -- wash clothes and catch up work at home, then drive back Monday morning early and check back into the motel before rads that day. I learned to dislike motels, but it did beat making a 145 mile round trip daily for the 10 minute rads session.
The other thing that stands out to me is --- we all get through it and move on and make a life that can be for the most part satisfying. I would have to be honest and admit there were times when it seemed I'd never be done --- but I did my chemo in winter.....so I think the combo often make it feel like it went on far too long. You will find your way and be proud that you made it through and once you are done it starts to lose its punch. What seemed perhaps harsh, lightens up. What might have been painful drifts far enough back that few vestiges remain. One of the biggest tests is would you do it again and in my mind there is no question....but I'm not going to have too.
We get to have a life again -- not quite like it was before --- but appreciation returns and gratitude for life's lessons and the challenges that we over came. Your book of life still has many pages for you to savor and enjoy.
Just a little note....in my book of life I am filled with gratitude and very thankful for all of you.
Hope today has been very good for all of you.
Healing happy hugs,
Jackie
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Hi everyone,
I read your "news bites" and as usual, grateful for all the information and impressed by your courage. You blithely describe the most difficult SEs and pass on your learnings with generosity. Our lives really do run the gamut, don't they. Some of us still working, some digging in the garden, some living in our own Walden Pond feeding animals, and some like me city dwellers. I think we have 3 things that bind us together: love for the community of women; a long life giving us the opportunity to shape and mellow our character; the coincidence of cancer.
I was eager to get home today and report to you re: my appt. with my BS. It was all good news.
My DX was a 16
My positive node is 16mm and he said it has to come out. His plan would be to , on the 15th do the sentinal node test and remove that node and any other that light up blue. Then he'd send me for rads and then I'd have hormone therapy.
I still am going for 2nd opinions. I think he said that I was not a candidate for mamosite rad but I can't remember why. He is like a steam roller. Talks real fast and hardly takes a breath so it is not a conversation and I forget some of my questions....like about Circulating Tumor Cells Assay. Have any of you heard of that? There is also talk of a node transplant. Ever hear of that? I will stay with the DINK surgeon if no one else has a new cutting edge procedure. I am still nervous about my arm. I have a lot of cysts in my arms. That arm can ache with some of them deep.
Anyway, thank you dear ones. Peace, joy and grace to you. Thank you for caring for me.
NAD/nancy....in Atlanta
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Oh Nancy....it is so good to hear from you. I was starting to feel a little concern. I felt a fair amt. of confidence....but then I tend to want to see the glass not only half full, but at least three quarters. I do feel it is mainly good --- but still miss Dr.'s point of not doing Sentinel when he was right there so as to avoid a second operation.
I have not heard of transplanting nodes before....but after I finishing writing here I'm going to look it up. If I leave now....I'll lose the post. I also think....if they transplant a node....where do they get it ? So many questions but maybe there will be answers later.
I think Dr. is ok.....it is just some of the annoying bedside manners....but who ever gets a Robert Redford look-alike for a Dr. who hangs on every word you say and wants only to answer your questions and soothe your fears. Well, it doesn't hurt to take a peek around now and then....just in case.
Still glad you will have the second opinion for over-all peace of mind. Lots of people have gone for 3rd. and 4th. ones even, but it sounds like nothing here is quite that up in the air thank goodness. Anyway, I will work on an email to you, but until then.....Whew !!! Glad that hurdle has been jumped and left behind.
Dh has the next couple of days off. Just when I have a million things to do --- well if were both busy we won't have time to boss each other around....a bonus in the making.
Joy, Serenity and Healing Hugs to all,
Jackie
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Morning again! I was wondering about you last night Nancy! I thought where IS she? So Mr. Dink is deciding to take out your nodes? GOOD! Maybe now we can relax. But request his royal highness for the Oncotype test! And did you get your final path report? Or I guess make him give it to you after your node procedure......
I'm like Jackie....I have never heard of a node transplant either.....Can you get a second opinion before you go back? I guess we can't help worrying about you, with this "I'm gonna talk so fast you will never understand me" Doctor.......What's his number? I'll call him up & tell him I am your Mother, & he needs some 'splainin to do!
Anyway, he, (Doctor Dare) sounds quite confident in himself....So maybe he knows what he is talking about! ??? If he says he is transplanting a node from your ankle area, call me....
I would worry about your cysts also....that might have something to do with his "No I won't, yes I will" plan of action! I just want to make you laugh Nancy..... So relax, & try & get another opinion before you do anything else, okay? We're here for you kiddo! xoxoxoxoxo
(And so where is YOUR Avatar?
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Okay Nancy, I looked up Node transplants....What they DO, with a patient is remove nodes from the groin area, to replace all the nodes they have taken from other areas. Hoping that Lymphedema will be helped....BUT the problem can THEN happen in the new area from which they were removed.
The first thing you need to do is ask this Doc what he has been smoking. Then get a second or a third opinion. Because you haven't even had one node removed yet! I would want to have a node removal, of any infected nodes....(you can tell with the dye) and then let it go at that. I was told your other nodes will take over for the ones that were removed. Some of us get Lymphedema, but some like me....don't. So I wouldn't want to ask for more trouble, than you already have....... thinking of you.....xoxooxoxxo
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"The most difficult thing is the decision to act, the rest is merely tenacity."
- Amelia Earhart0 -
Chevy....glad you looked that up. I got tired and did not do it. I had the same thought as you though.....unless the pathways are somewhat larger where the groin nodes are, I too would think you would just get LE problems there as well -- and now we get into another area of "operation" where you have to worry about germs and infections and dressings
I guess I would add to the above quote also.....getting enough information together to make a decision to act.
I had the three nodes out and Donna ( my Avon patient navigator -- we also became friends ) said she had never measured anyone with seemingly no change in size at all. About the only thing I notice is in the a.m. my ring is 'snug' on my finger but some time during the day I have to watch as it becomes a bit loose. I do a lot every day and in that sense have never babied my arm much. I'm concerned but feel like I have to do what I do so try not o obsess. As they say for the most part the things we seem to worry most about never happen....hmmm, maybe I should obsess.
Need to start on my day but I'll be checking back in later. See you all then.
Lots of hugs,
Jackie
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Hello Ladies - I just found this thread a couple days ago and have been scanning through the posts. I feel compelled to post to Nan about this node transplant idea. My neighbor had a band-aid hysterectomy during which they did some sort of sentinel lymph node biopsy. Not sure how many lymph nodes they removed, but she ended up with LE in that area. All puffed up tummy. So, there's no free lunch on this.
That said, you all probably read the recent article about the French BS who recently did a demonstration of this procedure. I think the important thing for you Nan is to be sure your surgeon is on the same page with you in protecting your arm as much as possible. Someone once said for any lymph node surgery, you want a surgeon who approaches the procedure as it they're disarming a grenade with the pin pulled.
I'm glad you're getting more opinions. Since you're a city gal, you've got options. You deserve a surgeon who explains things in a way that you can understand them. My first surgeon was a steamroller. Always running late, talking fast, and moving on to the next patient. My current surgeon is the complete opposite and it made a world of difference for me.
All the best.
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My mamosite was implanted correctly from day one, no problems. No infection, had a little rash and some peeling, worst thing was trying to get my arm over my head the first time when they were doing the mapping. I had bad tape burns also, RAD Dr. came in and told them to get all that mess of tape the BS had put on me off and to bandage with paper tape, he also told me to take a pain pill everytime I came in an hour before the rad's, that helped with the arm. After they started using the paper tape I had no further problems. I told the hospital when I had my port put in last week about the tape problem and they used the glue and a teflon bandage, but bandage only had to be on for a day. I also had a problem with the antibiotic Levaquin. They gave me a bag before surgery and then had me on it by mouth for 10 days. I would wake up in the middle of the night with the tendon on my right ankle burning and hurting awful. When I was finished with the med, 48 hours later it went away. No more levaquin for me it can cause tendon ruptures.
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I did not post yesterday as when I got off work I had to go and get my state inspection done on my car, thank God I did not have to wait. By the time I got to my husbands broom shop I was wasted and he closed early and drove me home. Stomach a little icky, mostly GAS. Better today, am at work, will work about 3 or 4 hours and go home and take a nap. Been sleeping about 12 to 14 hours a day. I have decided I will stay home for the 4th of July celebrations, first time in 9 years since we moved here. Don't think it is worth being exposed to something. On that note our McNair students have their research presentations next week and I am going to duck out of that for the same reason. That will be my time for low blood counts. Everyone have a good day. Take Care
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Well THANKS GabbyCal!!!!!!! The node transplant isn't used very often.... And yes I have heard of that same exact thing happening. If only a few nodes are removed, as in breast cancer surgery, there is no need to replace them.... And that is a good analogy...about a surgeon who will approach the procedure as if they are disarming a hand grenade.....Also about taking their time with us!
It just sounds like double-talk when they talk so fast, & won't wait around for us to ask questions. Like THEY are the ones that are right, & how dare us question them!
It is so important Nancy, to take your time, get another opinion or two, & get this taken care of as soon as you can. And don't forget to insist on the Oncotype test....They will test your tissue from the surgery you had.... So tell Dr. Dolittle we insist....
Meaning me! Mommarch.....Hey kiddo! I don't know why they "replaced" my Device a couple days after....But she said it had something to do with the first one was only a couple hundred dollars, & the Prototype was a couple thousand? I didn't know enough to ask any questions! But it worked anyway. Your Anti-biotic sounds awful! Man, we all react differently.....Sorry about your problems! And the TAPE! That stuff should be out-lawed....Ha! My Radiologist ALSO got mad after seeing what the tape can do....My incisions looked better than what the tape did to me...!
Jackie....You and I can't worry about Lymphedema.....
We just have to be very careful like Jo said.... And add that to our prayer list, which for me is quite long how.........Oh well..... Today is going to be a great day...... I have to buy some more bark to lay out front where I took some plants out..... Yes, Jo....with my gloves....Ha! xoxoxoxoxo0 -
mom....hope today has been better for you. We just do not know exactly what may come while doing chemo. This is essentially the same problem with LE. There just is no way to predict any of these things....who gets cancer, who will have mild se's, or crushing ones, who will have LE problems or not. For all the infomation that has been found about detection and treatment, there is so much that is still total mystery.
Don't want to open a can of worms, but you'd think with all the walks, other fundraisers, tests and trials and overall research......we woud have a few more answers than we do. Still, I am grateful for what is known as it has been my saving grace along with so many others.
As to needing more sleep mom.....I think a lot of people went through stages of that. I know I did during the chemo phase --- when at all possible just let your body be your guide and if it says rest and sleep, just do it.
Gabby....thank you so much for helping us out with that info on nodes. It is sharing with each other that helps so much.....I think the thought is safety in numbers. What one person does not uncover, someone else will and no man is an island......the help we can give each other is so valuable and priceless. Dr.'s are wonderful, but the truth is we are the ones in the trenches so we have a very high vested interest in the answers that come in from all parts of the globe....not just from one Dr.'s /Oncologists office.
Saying hi to all......see you later.
Hugs, Jackie
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Well Jacki, I want that in cross stitch. What a wonderful quote.
Re the node transplant. Gabby, my BS is also a steam roller. I mentioned node transplant and he just shook his head. You all agree it would be risky. No one has offered it but I wanted to be ready for the 2nd opinion if they did. My current "Dink" BS just wants to do the sentinal node and remove anything blue. I like the ticking hand grenade analogy. I'll use that next I talk to him.
I had an exhausting day tracking down my records. I spent an afternoon on the phone finding where to go and faxing requests. Then a couple of hours driving to different facilities to pick them up. University hospitals are confusing. I finally got them all. As flawed as they are, every office person and support staff have been angels to me. They couldn't be sweeter and I thank God for every one of them who tries to make this easier. Now I take records to the 2nd opinion Dr.s on the 5th.
Momarch, your levaquin reaction sounds awful. I am sorry you had to endure that. Has everything calmed down?
My son and family arrived tonight. I am happy.
love to all you sisters,
Nancy
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Morning girlfriends! I'm glad that your family is here Nancy! That always helps a lot!!!!! I'm glad you got your records....Whenever you have something done, ask them to mail the results into you... And then if they don't, call & nicely ask "Where the h*** are they"....Ha!
Marcha! I see we posted at the same time.....Yes, little honey, you have to rest whenever you can. Best not while driving...
But your body is taking a beating, although you sound fairly well considering you are going through chemo.... Man, I hate those State Inspecions.... Mine was a CIRCUS last time I went, but I got through it....I even had to get a new windshield because they could not see the "metal plate" with my vin # on it! My windshield is about 8 years old, but it did not have a "clear" spot to see the number! And I went back & told them "Okay, it is on the door frame....SEE?" Then they said, no it has to be the metal plate. I either had to go to the Sheriffs' Dept & apply for a new Vin, or replace the damn windshield! So the next day they came out & took the old one off, & I bought a new one with the little area exposed to let the plate show through! What a joke! I took it back, & the "other" inspector did not even look for it...
She took my registration & went ahead with the tests.... We also have those "Drive-by" where your exhaust is measured, & after 3 times of doing this, you get your "emmissions passed" report in the mail. I suppose a tiny little elf climbs up on the hood of my car, & takes my vin # in a split second? Nope, ain't gonna happen. Those people are not easy to work with!
Now what was I saying? Glad it wasn't something like that for you Marcha....
Jackie....I feel the same way..... I did the "Walk" last year, and it was alright, but soooooo many women & families! It would be nice if instead of doing that, all the money spent to put on that "get-together" would be used for research & treatment.... I know it was a celebration of life, but the whole circus like affair was just one big parade.... And all I wanted to do was cry.... This year, if my friend wants to go, I'll just tell her I'll buy her breakfast, if we can just skip it.
It's getting light out! Have to go lay down some bark..... Talk to you later! xoxoxoxo
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A healthy attitude is contagious but don't wait to catch it from others. Be a carrier.
Tom Stoppard0 -
Good morning everyone....my day to spend out at the no-kill shelter loving up on and cleaning up for some gorgeous animals.
Jeannette....you are too funny but Marcha really shouldn't rest while driving.
I do hope everyone will have a good July 4th. We are going to a friends house. Three birthdays to celebrate at the same time. Of course....we all bring food. I am bringing all salads, pea, potato and grape. Of course the grape salad is a sweet one.
Grape Salad
2 lbs. red seedless grapes
8 ozs. sour cream
3 ozs. cream cheese, softened
1/2 cup sugar
1/2 cup brown sugar
3/4 cup pecans, ground fine
Stir grapes, sour cream, cream cheese, and sugar together. Mix brown sugar, and pecans together.
Sprinkle on top of 1st. mixture. Yum, Yum, Yum.
When I first saw this...I thought it would be blase' at best. Was I wrong ! There is always a first time for everything, huh !!!
Just kiddin' about that last statement.....I've been wrong a couple of times.
Nancy....glad you are going on the 5th. for that second. I think one of the hardest things we do once we get this diagnosis is WAIT. It feels scary and backwards when we know it is there and we are not doing anything. Still.....you have to feel comfortable about what you do so you don't have to "wish" you had done something else. Once you are satisfied that you have answers that feel right to you....then full steam ahead.
We had to turn the a/c on again last night. It was great all day, but at nightfall the breeze stopped and mugginess began. So, for probably the next few days....but I'm hoping we can turn it off again. I just don't like the sensation that life is going on outside and I am missing it......the sounds of birds, and insescts, and the little breezes, especially those strong enough to rustle the leaves.
Anyway...onward for my day.....catch you all later.
Healing hugs,
Jackie
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If You Were Busy Being Kind
If you were busy being kind,
Before you knew it you would find
You'd soon forget to think 'twas true
That someone was unkind to you.If you were busy being glad
And cheering people who seem sad,
Although your heart might ache a bit,
You'd soon forget to notice it.If you were busy being good,
And doing just the best you could,
You'd not have time to blame some man
Who's doing just the best he can.If you were busy being true
To what you know you ought to do,
You'd be so busy you'd forget
The blunders of the folks you've met.If you were busy being right,
You'd find yourself too busy quite
To criticize your brother long,
Because he's busy being wrong.-R. Foreman
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Thanks Jackie.... I loved reading that....It's really something to think about.....Except I'm still wondering about Dr. Dink! 0
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Stopping in to say hello today. I rushed through my work at Maggie's, got the feral cats fed, and ran into WalMart's to get some Fancy Feast for my one cat with bad gums....teeth are ok, but she needs wet food ( something we rarely feed ) due to the gums. Vet told me that Friskies or Fancy Feast does not have the sugar content --- just in case there are any other cat households around.
Then back home to leave the car for Denny to take to work. I also have a new foster dog. She came into the Shelter yesterday...my shift of course. She is a little Miniature Pinscher. Very sweet and loving. I decided since I'm the one being foster Mom....I get to name her.....so I'm calling her Minnie. She is about 5 mos. old and is not too hyper....thank goodness. A little cutie pie.
Had to spend a couple hours out of commission while my computer was being worked on my remote control. It was not doing well this morning.....it was due to corrupted files the remote technician said. Makes it sound like I did something underhanded, mean, and dirty when you say my files are corrupted.....like I'm morally deficient or something. Anyway....all is fine now....and hope that doesn't happen again.
Well, time to go check....( its been awfully quiet in the other room ) on my pooches....Baby Boss, Teeny, and Minnie.
See you all later.
Hugs, Jackie
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Well miss Jackie! WHAT have you been doing on that computer? You are corrupting it ....again? Ha, ha! I just HATE when things like that happen.....Of course you do have to keep those porn sites down to a minimum.... If they don't corrupt your computer, they will corrupt us....
I'm going outdoors to water the lawn! xoxoxoxoxo0 -
Computers are really fun.....I just got done ( was it the 3rd. or 4th. time ) calling the technician again. Somehow during one of the previous fixes....my view went to what it used to be which was everything on the right side only and I had to constantly scroll......so the next technician was not sure how to repair this....so put in FireFox --- hope I don't hate it later, and it is working....in fact, the bar is back up top which says compatability views.....which is what you use....so if anyone has everything over on the right only....and not clear across the page.....keep playing with things until you find something somewhere about compatibility views. That should help you change it.
I hope I am not going to have more problems. I have patience, but not always for computers.
Hope your all having a quiet day.
Hugs, Jackie
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Ok...I am just finishing up another session with the techs. Talk about corrupted....I feel like it was almost beyond redemption. Hope this is it for ahile.
Hugs, Jackie
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Could a greater miracle take place than for us to look through each other's eyes for an instant?
- Henry David Thoreau0
