Can we have a forum for "older" people with bc?
Comments
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Thanks - or should I say no thanks - for your comments. I am sure I must be a genetic mutant anyway but perhaps I just have a strong odour detector. All the docs and oncs are men and less than interested in such piffling complaints (as they see them). When a man has periods/hot flushes etc. we will never hear the end of it!
Sandra, so sorry to hear of your husband's state of health - hope he can beat it. Stay positive, it really is the best way to cope - no one wants a moaning minnie about and laughter and smiles are contagious and so good for one's mental health but I do feel for you.
There are so many difficult things in life that people have to face and bc is just one of them. Hope those of you who are lucky enough to have warm sun this time of year enjoy it. I guess you Sheila are in the sun anyway.
The very best wishes to you all for the New Year - 2015 will be a good year - we are still here!
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Snndra, Robin's sister is a news anchor on the New Orleans CBS station. Sally Ann Roberts. She participated in Robin's transplant. I hope your dh gets good treatment and manages his disease so that both of you can enjoy life. Robin is back at work and looks good.
I took arimidex for almost 5 years and didn't notice any odor. I did have warm flushes but these were lessened by taking a low dose of the generic -- senior moment, can't think of the name of the common anti-depressant! It will come to me. Effexor!
It is overcast here today. A gray, rather gloomy world outside. The aroma of corned beef will be filling the kitchen. Our New Year's Day meal is traditional for this part of the country. Black eye peas and cabbage. Not cooked together! The peas will be cooked with some smoked ham and onions and garlic. The cabbage, along with potatoes and carrots, will be boiled in the liquid of the corned beef after the beef is tender.
Having problems with charging my laptop battery. Rosanna Dana was right. It's always SOMETHING!
Happy New Year's Day to all.
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Sandra, you know we are all here for you. Mike is lucky he has you to "pave the way" so to speak. He sounds like a tough, positive guy which will serve you both well during this bump in the road. God bless you both
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*Healthier and Gentler 2015*
*Happy New Year Day*
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Oh Sandra, so sorry to hear Mike's diagnosis but it's good that the doctor is optimistic. You can attack the problem this next week after you know for sure what you are dealing with and we'll just hope and pray that there is a treatment option designed specifically for his situation and stage. Hugs to you as you await his upcoming doctor's appointment.
MomMom...Naples is a very lovely city and the area around it is gorgeous. Housing and winter rentals seem to be a bit more cashy there than in areas that are slightly north of Naples. That's one of the reasons we like the Cape. Bonita Springs and Estero are also a few more "reasonably priced" areas.
We have decided that we are leaving tomorrow night after my appointments. They are predicting a 70% chance of freezing wintry mix for our area on Saturday and we want to get to Paducah, KY tomorrow night in hopes that we avoid the ice. We don't mind driving in rain but sleet and that bad stuff scares us, especially when we're hauling a boat behind us. We will honk as we pass your "turnoff" on the interstate when we go by about 9:00 tomorrow night, Jackie! :-)
Carole, your New Year's day dinner sounds wonderful! Enjoy!
Once again, Happy New Year to all of you!
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Yum, Carole. Wish I were at your house today. I have cabbage in the fridge...maybe I'll make that. It would be nice to have all the rest of the meal but it's rainy and cold outside and I don't have the heart to send my daughter to the grocery store. I'm not driving yet.
Di, you are my "go to" women! I will spend time online today and see if I can get some info sent to me as well. There are so many websites and like breast cancer, you never know if what you are reading online is the latest info or something written by a wacko. Any particular recommendations are welcome. Mike's hematologist told him she'll have some pamphlets for us on Wednesday when we see her but of course I don't want to wait. I wonder if there are any books about myelodysplastic syndrome? Your HCT was 3.2!!! Goodness, that's so low! Mike's hemoglobin was a 6 when he collapsed but after 2 units of blood, he was up to 8.6 when he left the hospital. He had a blood draw on Monday, 10 days later, and hemoglobin was down to 8.2. I wish it hadn't fallen at all, but at least it didn't drop like a rock.
Seems like it's raining bad news lately. My good friend Wendy was diagnosed with liver cancer totally out of the blue and will have surgery next week. (She's not a bc person.) Another friend Marge was diagnosed with aggressive triple negative breast cancer two weeks ago. I don't know what kind. She's getting a PET scan today, a port and starts twice a day chemo next week. I don't know that I've ever read about twice a day chemo. They aren't doing surgery yet so I guess that means it's bad.
My kitty-buddy Jeffrey and I are spending the day just like we did yesterday...in the recliner with a blanket and a cup of tea. I watched the Rose Parade and now have football on tv. Love these lazy days.
I'm from St. Petersburg, Florida which is on the west coast. It's that little peninsula that sticks out into the Gulf of Mexico half way down the state on the left. We have a house there that my mother left me. Our daughter Stephanie lives there and we visit at least once a year. The next trip is planned for late March or early April. We have to be in Tallahassee (north Florida) for a wedding on April 11th but don't know if we'll be "home" before or after. How many of you will be in Florida then? Have car - will travel. Ft. Myers, Estero, Naples are only a couple of hours away. Living in Texas, we're well used to driving what others think are long distances. We can "zip over" to Houston or up to Dallas in a couple of hours, so we can surely drive to meet YOU! I remember asking my mother why she didn't go to the new big Walmart that had just opened in St. Petersburg and she said, "Why Sandra, that's TEN MILES AWAY!" We drive 30 miles to the other side of town to a favorite restaurant routinely or drive 70 miles up to Austin to concerts often, so ten miles is nothing. Guess it depends on what you are used to.
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There comes a time when you have to stand up and shout: This is me, damn it! I look the way I look, think the way I think, feel the way I feel, love the way I love! I am a whole complex package. Take me. . . or leave me. Accept me--or walk away! Do not try to make me feel like less of a person, just because I don't fit your idea of who I should be and don't try to change me to fit your mold. If I need to change, I alone will make that decision. When you are strong enough to love yourself 100%, good and bad--you will be amazed at the opportunities that life presents you.
Stacey Charter -
Ritajean,
Tomorrow, have excellent results from mammo and tests!
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Di, forgot to say - no, Mike has never had rads or chemo. He's never been in the hospital until this time. The Air Force kept those pilots pretty healthy.
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Happy New Year everyone! Lots of new people on the thread and I welcome you all as well as greetings to old friends! Wishing you all strength and happiness in the new year...keep the faith!
I passed my last mammo with flying colors and my eyes are stable so no complaints here. Did a fantastic cruise in November with girlfriends, Thanksgiving in Florida, and Christmas and New Years in South Carolina in our new home. Took a short trip to the beach to enjoy the warmer weather. Will head back to Florida in mid January.
Hope everyone enjoyed the holidays!
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Kaara,
It is so good to see you. You don't come often enough to suit me, but I understand. That is truly good news that you have -- especially with your eyes. Also had forgotten about the new home. You know, that is what happens to me -- out of sight....sometimes out of mind, though I don't mean to forget, and then I forget something really important like a new home. I'm assuming that you still have the same boyfriend as you did say " in our new home ". Anyway, so glad to hear all is well. That is starting this yr. on a really high note....
Jackie
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Happy New Year to all...I just read three pages and am grateful for those good reports; and hoping to hear better news for the challenging ones.
Rita, sending positive thoughts for your tests on Friday. Hey, if I climb in your pocket, maybe I'll get a trip to FL. Wishing you a safe trip and hope you keep in touch!
Sandra, I'm hoping that you and DH get the best possible news about his illness. It is a very difficult time as you have just finished your surgery and now he will be beginning treatment. You and DH have strength to get through this. You both have a lot of life's abundance ahead of you. Hugs & prayers.Just got in from a trip to Dd's in DC - more later.
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Morning gals.....Sandra, I have never heard of that before... but DO know what Robin Roberts has gone through....
I looked this up, and seems to be an informative article.... did you see this?
http://www.webmd.com/a-to-z-guides/myelodysplastic-syndrome-causes-symptoms-treatment
I can see why he doesn't want to say anything.... some people who don't understand can say the dumbest things.... like we all know, from our OWN diagnosis.... and it sounds like he has a good team, to give him the best treatments there are!
And they are always coming out with so many different treatments, which really add to our life expectancies....
I know.... isn't it true Wren, that we can say things here that we can't to our family? Sometimes we are better off, not saying what is going on with us..... It worries our family too much.... so some things I just keep quiet about.
And CAMMI posted!!!!!!!!!! But I didn't! Little one, I hope your Brothers are doing alright.... and that you, yourself are doing okay after these busy Holiday's!
But Jackie.... I think if we can stay positive about SOMEthing, that helps us a lot.... Our attitude really can help pull us up.... It seems like the less people involved in my whining, makes ME get stronger. Like when I was so laid-up with a leg that wouldn't work.
Sometimes we have to push ourselves sooooo hard, to get our mind back to "normal" and then we can handle things better.
I LOVE that saying you posted!
"There comes a time when you have to stand up and shout: This is me, damn it! I look the way I look, think the way I think, feel the way I feel, love the way I love! I am a whole complex package. Take me. . . or leave me. Accept me--or walk away! Do not try to make me feel like less of a person, just because I don't fit your idea of who I should be and don't try to change me to fit your mold. If I need to change, I alone will make that decision. When you are strong enough to love yourself 100%, good and bad--you will be amazed at the opportunities that life presents you."
Just SOMEtimes we would like for "people" to accept us as who we are.... and then we can go on pleasing ourselves, and not just some-one else.
Happy New Year to everyone else! -
We’re students every minute. And as a result, we teach. Each journey is unique, and the lessons in every experience are by design and on schedule. God’s plan for us has brought us here. God’s plan for our future will take us wherever we need to be. Our assignment is simply to listen and learn and pass on to others what we’ve been taught.
unattributed -
Well, now, you know I will have to say that while it says unattributed up above on the quote -- Cammie usually says those things. Gray day here and some rain last night. Not too much though but no good weather today. Well, I had sun for two or three days. So, I'll just have to buck up and go with the flow.
I enjoyed reading that link Chevy. I don't really believe in luck -- but the word is used because it is the best one to get the idea across. The reasons why we have anything -- be it cancer or anything else can be simple, but not so easy to explain. Luck or even other words like chance, seem nebulous because there is no more reason for them to fit any of us or all of us, either way it goes. Sometimes we get a little obsessed with wanting to know why -- for others in many cases that we love and care for -- like our children. I do think ( I think it took or takes from 5 to 6 yrs. for the people who had chemo as part of their tx. to fully re-grow -- re-place all the cells that we knocked out with the chemotherapy, so that does mean that there can be on-going cell growth all of the time. That does seem to leave a vast territory open to something in the form of mutation going wrong. Sigh !!!
So, we just have to enjoy our days as much as possible and think positive about the good things we have and go along with whatever our little cells decide they have to do. We are not obviously able to influence them as much as we'd like and the truth is -- no matter how well we may do with one issue ( like cells ) something else always rears up. Like needing to watch our eating -- our cholesterol, or so many other things. So live to the fullest. Be grateful for life and enjoy as much as you can for as long as you can.
See you all later. I'm off to do my cats for now.
Blessings
Jackie
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Sandra - it's a little over 6 miles to an old Walmart and just over 15 to a decent grocery for me. Driving isn't a big deal but I'm thankful to have a Prius that gets 50 mpg. And I've become such a wuss that when the temp is like today (30s) I could drive for hours loving the heated seats. The ophthalmologist better say I am ready for laser to finally get clear vision after four months because I need to see clearly because I will be my first class in over four years,a crochet class, which will really be therapy for me.
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Chevy, my husband saw the same thing...that getting cancer is often just bad luck. That's the premise of an excellent book called The Emperor of All Maladies by Siddhartha Mukherjee that many of us have read. Developing cancer may be the result of a thousand separate "mistakes" - each one timed to the millisecond to influence the next one. At any point the whole chain can become unraveled and no cancer develops. Most of the time that is what happens. So it really is just a matter of luck.
The WebMD article has similar info to what I've been reading today. For the most part, I'm sticking with research on the Cleveland Clinic, Mayo Clinic, and National Cancer Institute websites. I read with an open dictionary since I don't speak "hematology." I'm learning fast though so I will be able to understand the doctor a little better when we see her on Wednesday. As soon as we know the staging - low risk, intermediate-1, intermediate-2 or "kiss your ass good-bye", the future will become more obvious. The goal is to slow the inevitable progression to AML, acute myeloid leukemia, which is ultimately fatal. If he has the lowest staging, there are several good therapies and the median survival is 12 years. The only cure is a bone marrow transplant but that is survivable only 50-60% of the time and actually very few people are candidates.
A month ago I thought I'd be celebrating right now because my surgeries are over, not focusing on my husband's survival. Never did I think I would even know how to pronounce some of the words that roll off my tongue so easily today.
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I agree w/Chevy's link that that many cancer's are random - or just a matter of luck - and we didn't do anything to cause them. When the article first came through on Reuters, they listed a bunch of cancers (22 I think) that don't have a direct causal link - like pancreatic; and 9 that do have direct cause - like lung cancer & smoking. All of the articles since that first feed seem to have deleted the lists of the various cancers so I'll have to research again. Prostate & Breast Cancer were not on either list since they couldn't get consistent results.
Sandra - continued hugs & prayers.
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FOR GG
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Yeah, I know! When I first had BC I thought "What did I DO?" And at that time I kept hearing, "Well your Mom had it...! But I didn't know if I had that BRCA gene, and could pass it on to my girls... found out I didn't. When Mom had BC, they just did a radical mastectomy, they called it... And she was in CA, and didn't talk about it much. But she seemed okay with her ... prosthesis.... So maybe it ISN'T hereditary...
But when I asked my Surgeon, SHE said the same as the article... that it's the constant cells changing... and something goes wacky... Didn't have to blame it on the BC pills I took for years.... Or the Hormones I then took... Or heredity. It just was.
Sandra, that's good, that you are familiarizing yourself with all the terms, etc! It's like you guys were hit with a double whammy! You know what? After you hear everything, and know what is in store, you guys should just relax, do EVERYthing you always wanted too!
There is always time to worry, and go for treatments, but make that just a small part of each day.... Go DO things, if even going out for a walk, or getting something special at the store, like Crab-legs, and Pomegranites, and those fried Chicken Tenders! We did that the other day, and I felt like a "gourmet!" Ha!
We just don't treat ourselves right... We should always accept each day, and see how we can make it turn out better...
I remember when some dink Doctor came in to see my Husband, when he was admitted to the hospital, with SEVERE pain in his groin! This Doc peeked his head in, and said, "Well it looks like you have cancer in your prostate".... My heart dropped, my husband just closed his eyes.... And I laid my head on his chest, and cried.
So then this Priest, was walking by the door, and peeked in, and asked if we would like a Prayer with him... So we thought, "why not".... And during his prayer over us, another Doc came in, and said "Good News! None of your tests show any kind of cancer!" It was like Heaven answered! Like that Priest saved our lives!
Found out it was severe Epiditimitus... an infection in the epiditimus tube men have, and somehow it caused ALL that pain.... where he could not walk... barely MOVE! I wanted to hunt that Doc down and give him a "What For!"
These scares and heart-aches are with each one of us.... So just remember to be there for each other, like you guys have been, and you can handle ANYthing! We're WITH you kid! xoxoxo
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Hugs! xoxoxo
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Hi everyone Happy New Year and I slept til 3PM yesterday afternoon. Oh such energy.
Chevy I have to say I agree, random is random totally, luck, timing whatever it just happens.
Sandy my niece has what u'r DH has and she has had it now for about 5 urs and it is under control for her, but she does get blood transfusions every so often--she did have them much more at the beginning, but she has evened out more now with constant attention and it's much less. U'd never know she was sick, but she never complains and honestly sometimes I forget cuz she's as active as anyone else, but she is stable now and I still don't really understand that disease. So I truly hope everything is found in time to really help him.
And yes sweet Jacki, u know I said that somewhere along the line, after all there are many years of talking that I have done.
Rita mst be on her way nw, hoping they missed any goofy weather. No going out for me today-there was a lunch planned but we are all wimps and called it off due to the weather.
I didn't read everyone and I'm sorry so I hope everyone is doing OK
Chevy my typing is actually getting worse, how can that be? I thought it xouldn't get any wose than it was, now it's really going further down hill. This sentence looks like it was done on purose but it wasn't.
Hey Carole hope u'r doing well.
Jackie it's still dark out cuz of the weather I guess, not such a nice weekend--drive carefully. I know how much u dislike this, but winter is here now so just take it easy when u go anywhere.
xoxoxoxoxoxox
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Your sentence was done on a Porpoise? But you DO make sentences! More or less! And you gave us kisses and hugs! You little Dickens! Thanks for posting about your Niece! Sorry about that? And she has had it for 5 "urs"??? You cute thing, I KNOW you mean years... but we don't care... we just want to hear from you.
I don't think any of us understant that disease... but the more we learn, I think it doesn't scare us as much!
Yes honey, it is still dark out, because it is NIGHT.... It usually gets dark this time of night... It's dark here too... Usually happens between maybe 5 and 7 our time.... Maybe it's different where you are? Are you in Alaska? I don't like this weather either! I don't like to get out in the snow... or even at NIGHT for that matter! You can't SEE anything!
I completely re-did this "sweater" I ordered from Amazon... It would fit a small CHILD! And they would only give me a "partial" refund... So I took the seams apart, and made it large enough for an ADULT to wear, and it is even BETTER now! It came from China... so gals.... do not ever order one, unless you can knit or crochet, and add on to it, so you can actually WEAR it!
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Choose Inner Peace.
Nothing is worth losing your inner peace.
Take action as circumstances require,
but never surrender your inner peace.
Stop. Breathe deeply.
Close your eyes and breathe deeply again.
Then, and only then, take action -
from a peaceful heart.
- Jonathan Lockwood Huie -
Good Morning
Can't say there is a lot good about it, but then it is not a surprise -- I knew the rain was coming. I opened the door earlier to let the dog out to 'go'. Boss took one long look and promptly turned around. No thanks, I'll just hold it !!! Oh yuck !!!! Well, it is warm enough not to give us snow or even freezing ice on the roads so all is not lost. I don't know for sure about overnight and tomorrow -- have to wait and see, but we keep going. As I always have said " It's just amazing what you are able to do when you have no choice ".
Well, the quote this morning ( one I have put out before ) seemed so "right" when I saw it this morning and I think it was for Sandra. So difficult at times to feel peace when all around seems to be turmoil -- but it is the inner peace that adds so much to your strength and just puts the "can do " in everything that comes along.
It was still dark out this morning when I got up -- around 6 a.m. Dh was still in bed so I stayed as quiet as I could -- but he must have been awake because he got up and came out to the living room as well. It was nice to have a 'coffee companion' and watch some news together. WE do it everyday -- but maybe due to the rain etc., it just seemed cozier today and easy to appreciate and enjoy.
I think nearly everyone is having not such great weather, maybe even Texas, today. Big storm all along the bottom of the U.S. and seeming to go from Texas clear over to the East Coast. Some of it reaches up to the mid eastern states too which is why we ( including Chicago area ) are not doing so good. Too gray but hey, I'll close my eyes and see sunshine for a while.
Anyway, I'll be back later.
Blessings and hugs
Jackie
ETA: Forgot to say that I really like that sweater. You are so talented Chevy. You would be the one probably that made the best tasting mudpies as a kid, I bet. You just got it going on.
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Chevy, you are a genius! You have a one of a kind, even better sweater now - and it's beautiful! I admire those who can knit and crochet. I remember trying to knit and finding out I just didn't have the talent for it. Never did try to crochet. My mother went to high school at a convent school/home for girls and the nuns made sure she could crochet beautifully. Her handwriting was perfect as well. She would write letters on plain paper and the lines were perfectly straight with no cheat-sheet underneath. My handwriting is shaped similar to hers (again, thanks to the nuns) although I never learned to write in straight lines. None of my children inherited good handwriting from my side of the family, but then again 2 out of 3 are left handed. They were not allowed to write in that lobster-claw over the top way many lefties do and have decent handwriting. Goodness, now they don't even teach handwriting in school anymore. Printing is good enough, then they move on to learning the computer keyboard.
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OMG! HaaaaaaaaHah! Well I've never been called THAT before... but I will revel in that for now.... THANK you! And I bought that little "closure" at Jo-Ann's Fabrics.... Kind of "finishes" the whole thing.
My Mom always had pretty hand-writing.... and I USED to.... but we don't use it anymore, so i think that's why we "lose" that.... Yes.... or set a ruler down to keep the lines straight..... Ha!
Thanks Jackie.... it was either "fix it" or donate it somewhere.... and I just started thinking, "well, I have that color of yarns, so maybe I can just add on to it".... And it worked.
Now I'm working on extending a short afgan, and making it a lot larger, with cream colored "blanket" yarn.... But it's easier than that sweater was....
Supposed to snow.... oh wait.... It already is.... and getting colder again.... so what else is new...
Hope the neighbors get home today from Houston.... with their 2 little girls and little dog! It's is just getting harder to go over them in the ice and snow to feed their Chickens and cat! Especially when the chickens water bucket froze up, and I had to bring them fresh water every day.... They've been gone 10 days now.... and I don't usually mind, even without them paying me, but now I'm getting a little miffed....
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Chevy,
Not that you should be putting out money for anything where your neighbors are concerned, but you can get water buckets, shallow dishes etc. that if plugged in have a heating element in them. Just enough to keep water from freezing, but not enough to heat the water in the container. We have them. We use and old one that Billy tried to chew up ( the underside inside element stayed good ) and we put the galvanized bucket in there ( you have to put some water in the first bucket as that is where all the heat will accumulate ) and then can set anything else inside. Don't know if your neighbors have an electrical outlet available.
Saying it that way since if you did something like that....you could always take the water heater back to your house. Those people sound like they might not know how to take care of the heated appliance. It is just a thought. I too would be mighty irritated. They are so fortunate to have you "care " for the animals they seem in general to have a lack of regard for most of the time. Oh well, hopefully they will be home soon and not go anywhere else this winter. Sure hope they will see that the chickens get the fresh water they should have if the water freezes while they are home. You know, I just sort of wish I hadn't thought of that.
Anyway got my fingers crossed.
Jackie
ETA: You do know Sandra that we are going to have trouble over this genius thing don't you ????
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Sandra,
I realized I told you the wrong info about MDS....if you go to Aplastic Anemia & MDS foundation that is who sent me a "boat load" of info....
https://www.aamds.org/patients/educational-materia...
Also was Mike involved with Agent Orange when in Viet Nam?.....also there is info on that page about it, on the left hand side (in the blue box) of the linked page.....
Thinking about you both.....sending hugs....Di
FOR GG
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