Can we have a forum for "older" people with bc?
Comments
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has anyone heard of not drinking or eating anythng with soy protein isolate in it, due to estrogen levels
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Hi,
Mom started the new seizure med Sat. Her neuro talked to me in the hall when I picked it up. I didn't realize I needed to memorize what he told me...because the titration med. pack the receptionist gave me included NO NOTE from the dr! I think he said to taper her current med in 5 days which is very contradictory to the mfrs. rec. of the new med.(4 weeks). Luckily, I was able to get a last minute appt. at epilepsy center at Univ. of Penn hospital in Philly Tuesday for a second opinion.
I got back early this afternoon from the picnic in the Poconos and mom doesn't seem to be as tired. Who knows what effect these brain-altering seizure meds have...She seems to have a little appetite, trying more food (bowl of Cheerios), but still not eating much at all.
I am listening to an audio program about relationship (marriage) renewal. The instructor mentioned a quote I heard a couple years ago for the first time: "Slow is fast and fast is slow." At first, I didn't get it but now I see it applies to so much.
Take care and thanks for your support and ideas.
Sharon
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Oh, and the neuro said she could take 8 mg of Zofran. We had it in the house for when Mom almost did chemo (that dose was 8 mg) but the gastro had her on 4 mg. Maybe that is why she is trying a little food. Someone told me it can give bad constipation though....which is already an issue. Hoping the seizure specialist knows alot about alot of different meds! Someone must!
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- The life of the individual has meaning only insofar as it aids in making the life of every living thing nobler and more beautiful... Albert Einstein
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munni....I would have to look that up, but I know that I have heard a lot of negative viewpoints of SOY in general. Because I use so little....I have continued using Silk Soy miik for cereal. Adult per se' don't really need milk at all............so I don't drink it, but just use on cereal. I also think the isolate form might be what is in the protein drinks ( cans of powder to reconstitute ) and that may be a BIG dose at once used that way. I can see some research in my future.
I tend to try and go with the idea of moderation in everything. Somehow.....and roughly since you get that information most of your life anyway, I feel a sense of comfort in it. I do know we should watch anything that would 'fire' up the hormones.....especially as much of the BC is fed by estrogen.
REG/Sharon. As you can see....it never stops. I do hope you can get answers that satisfy you with the second opinion. I think another source of info could be your/Mom's local pharmacy. Pharmacists I think can be good sources of information as well as Web M.D. from the Internet.
As far as constipation....fiber foods if tolerated would be great now. Also there are good laxative stimilants if she can take them...Senecot, Miralax, etc. Glad there is some improvement to the appetite.
Hi to everyone else. Hope you are enjoying your nice weather Carole. We are still much cooler here. Not sure how long it will last, but there is rain coming....just a matter of exactly when...maybe a bit ( brief shower today ) but sounds like it could be an all day affair tomorrow. Well, I just know we are in unseasonable weather ( breaking some records for cool temps this time of yr. ) and hoping if we go back to normal it won't feel awful. My tolerance this yr. has not been bad no matter what.
See you all later.
Peace and love
Jackie
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Jackie, our weather here in northern MN was like winter in July for us! The north wind had all the flags flying straight out. The daytime temp. struggled to get into the low 60's. DH and I spend a couple of days indoors in the camper. I cooked a winter dish, a pot of chicken and sausage gumbo which we ate over brown rice. It really hit the spot.
Today is very nice, mostly sunny and temp. in the 70's. This morning about 9:30 we loaded our fishing poles and gear into the resort canoe and ventured out onto the lake. We fishes for about an hour and didn't catch anything but we floated within 20 ft. of a beautiful mamma loon and her two brown fuzzy babies. It was really nice out on the lake, very quiet with almost no boat traffic.
Now we're at the library in Park Rapids, using our laptops. When we leave here, we'll make a Walmart run to get a few things and order a prescription for me.
I talk to my mother on the phone almost every day, and she seems to be doing well. I'm thankful for that.
Hi to everyone.
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Excuse the typos in my post!
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It's almost unbelievable- severe UTI. Started mom on antibiotic tonight. The aide that stayed with her this weekend called me right after she left questioning how much money I gave her vs. what I said I would pay her. She apparently misheard me. I explained how I know I didn't say that amount because that is more money than I would have had to pay an agency. Today she sent my brother and me 3 long texts about how we didn't respect her even though she treated mom with respect, cheated her, didn't care about mom, that we would get bad karma from this, that she would never cheapen her family member's care, my mother deserved better because mom treated us better than we treat her now, shame on us, on and on. My brother responded to all restating what I said she would be paid, that we have paid others that amount, that we don't owe her more, etc. And I came back 5 hrs. earlier than I said I would and gave her the same amount of money. Typically, I would want to "correct her". As you know, I have basically given up my life to care for my mom so if karma is true, I won't be getting any bad karma
But, I think I am so sure of that, that her words hardly effect me. I told my brother maybe we should give her at least money for the few hrs. she came for interview/training to appease her and stop me from worrying that she will show up at the house, or yell at me in a local store. Maybe this is why the reference she gave me never called me back...and why when I emailed her for reference phone number she responded that she was confused why I emailed her and didn't call her since we had met by that point.
So, back to square one for finding a weekend aide...Jackie- sure wish you lived close to me, I bet you are an awesome caregiver!
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Howdy,
Went to Lake Sommerivlle in Texas on the 20th and camped in our cabin tent for 8 days,
we were going to FL but changed our minds and went half way and kids came and camped for two days. I don't know how but we spent alot of money. Thats ok this is the first time in 44 years that we have not been tied down to something or someone.
Can't take it with us. We met the kids to take our Grandson home to Los Curces, NM at the end of the week, so his sister Kimber came back to spend a couple of weeks before school. We will go around the 8th or 9th of Aug and go to Miss. and meet them and return her. It has been a busy summer. We have had some wonderful rains, things are turning green.
I am off the ambien and sleeping like a baby, I feel much better. I can get up in the morning and be functional. I had no idea how bad the med was. My NP just thinks it is great. New Dr. said you should not take it for more than 14 days. Still have the body aches etc and hot flashes from the Tamoxifen but just have to deal with it.
Hope all is well with everyone.
Hugs
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Hi everyone--I'm trying to catch up.
Carole for once it sounds like Jackie and i live in the same state. I'm glad u'r busy and having a relaxing time.
Linda question--Did u drive to LI then take a ferry and u were in CT close to wear u'r son will live--that sounds awesome--As u know I know nothing about directions so that sounded easy, but u didn't say how long it took.
Reg u'd better not take anything that lady took seriously, u got a winner so forget her and get someone else. I think I would do the same thing I think Chevy said---I would take her to ER and let them admit her=How much more can she go thru and this is so difficult for u too.
I see my surgeon Wed, and my last 3 tests were sent to him so I hope he has a solution and I don't thing it will be lap for this operation, but who knows they do so many things easier now so I'll find out and let u know.
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We the decent people of the world stand for the kind of life that will be good for all of the people, all of the time, everywhere. We believe that this is a beautiful universe and that it is made for love and not for hate; for peace and not war; for freedom and not slavery; for order and not riot; for compassion and not violence; for happiness and not misery. We believe that the ultimate decency is to help people and never harm people, to lift people and not degrade them, and to respect the dignity of all people as individual human beings.
Wilferd A. Peterson0 -
Oh my, my, my. Sharon....so glad that your Mom's major problem seems to have been tracked down. I am so sorry to hear what your aide did and said. Would be so nice if she would at least OWN up to possibly miss-understanding you. That could open the door to maybe communication which would help everyone get on the right page.
Sharon....right now I wish I was there to help you with your Mom too. I have been a sitter for a long time.......but my rule of thumb always was......if I haven't done the kind of things ( job ) you expected to get....then you don't pay anything. Everyone needs money these days but trying to guilt someone into paying you more is obnoxious ( almost cruel ) behavior......very un-becoming in the worst way. I think the sitter needs to go back and read up on how karma really works. She could be in for a surprise. Glad you are not fooled by such shenanigans. ( Sp )
momarch --- you are so right. It is only money and if you have a wonderful time ( sure sounds like it ) then it was worth it. I am always ambivalent about money....sometimes it hurts as much as it helps. I never have enough, but somehow ( it is about to be put to the test ) it seems to turn out to be enough to get me what I need.
Cami -- I'lll be thinking about you tomorrow and sending lots of love and care and hoping that something new has developed that will easily get you just where you need to be. It is hard to be in pain and distress so I'll be wishing with all my soul that good answers will get you across any hurdle that is in front of you.
Carole....always such great vacations......as we sit in this rather gloomy, rainy day. I really don't mind. So far it has been such an interesting summer. I was so nervous we might have another drought....but we have had more rain this summer than almost anything.
Hope you are all having a fantastic day.
Peace and love
Jackie
p.s. --- first day at his sitting job... excellent. My lady can do pretty much for herself --- 97 and uses a walker most of the time but can dress, and use the bathroom alone. I'm there mainly to make sure she has help IF needed. She does not however, cook for herself.
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Live your life each day as you would climb a mountain. An occasional glance toward the summit keeps the goal in mind, but many beautiful scenes are to be observed from each new vantage point. Climb slowly, steadily, enjoying each passing moment; and the view from the summit will serve as a fitting climax for the journey.
Harold B. Melchart0 -
Hi Ladies,
The epilepsy specialist DISAGREED with local neuro recommendation to taper current med next week when using the new med. he suggested. The specialist suggested a different new med (common side effect- sedating) that would allow the current med to be reduced next week and be gone in 3 weeks. She agreed the first new med would be a good choice otherwise, since typically no drowsiness with it, etc. So, we are keeping all 3 meds right now. In case the "sedating" med is too much, we have a back-up in progress. I'm debating stopping the back up only because she has a bunch of AM pills now and we wait between each one to make sure she doesn't throw up. The schedule is so confusing the dr. made it a table plus when I got home I had to put post-its on the med. pictures I have for the aides indicating the changes so I could look at them to know what I was supposed to give when!
I don't know if it was the 1 1/2 hr. long car ride yesterday but mom had a rough day. Threw up 3 times in car on way back, then more when we got home. Dry heaves to the point of green bile last night which freaked me out since that is sign of serious stuff. But, also sign that there is absolutely nothing left to throw up which I think is what I happened. It was really hard to even get the nighttime meds to stay down. Obviously called dr. this AM. Asked for CT scan of abdomen to check kidneys (due to UTI) and intestines. GI thinks no obstruction but we are supposed to double check with a test in which she has to drink something. She seems to be keeping water and Gatorade and meds. down so far today.I read that once your brain's vomiting center is activated sometimes it stays overactivated- hoping that's what happened yesterday. She is sleepy but could be the new seizure med. 6 days til we taper the old one...won't be soon enough. Praying that solves the problem.
Off to have mom take more sips...
Sharon
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The experienced mountain climber is not intimidated by a mountain -- he is inspired by it. The persistent winner is not discouraged by a problem -- he is challenged by it. Mountains are created to be conquered; adversities are designed to be defeated; problems are sent to be solved. It is better to master one mountain than a thousand foothills.
--William Arthur Ward0 -
Good morning....Sharon -- I have to admit I'm a bit lost with your Mom's meds at this point. Guess I'l want to go with whatever offered the best chance of seizure control if at all possible so it may be the best thing to try to head in that direction. Could that your mom can tolerate the Gatorade as that should keep her hydration ( electrolytes ) on a better level.
Just guessing here but I would say if you regurgitate a couple of times that there could be 'spots' all along the way that produce some irritation leading to keeping the gag reflex active. As well, since she was not eating much anyhow.....you are likely right that she had emptied out anything in her stomach that was available and only bile left. I'll be hoping and praying that you can get her off the old med and onto the new one without much incident.....and by that time hopefully the sleepys will dissipate.
Hoping you get to a good point soon where you can devote a bit more time ( especailly some week-end time ) to yourself and your life.
Just thinking out loud here.....it has been 6 years now in Oct. that I had my lumpectomy ( diagnosis right after my birthday in Sept. ) and 5 yrs. since the finish of active ( chemo or rads ) txs. since the end of April this yr. I will finish up with Arimidex/anastrole in November. Of course, at that time....I'm sure there will be a discussion on whether or not to continue on with it or do some other AI for awhile. Probably not too soon for me to research options on my own to be prepared.
Hope you all have a wonderful day.
Peace and love
Jackie
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Hi gals!
I don't think that I've been on here since May so I am very far behind in my reading and it will take me time to get caught up.
I have been doing a lot of traveling back and forth from Illinois to Tennessee to be with my father who has been in VERY bad shape all summer. I am home right now but will probably be called back very shortly as the end is rapidly approaching. He has not eaten for two days and they increased his oxygen today. He can no longer talk and has difficulty swallowing. He is 90 years old and completely bedfast. It is so hard to see him this way.
In between trips, I try to get in a little golf and have co-chaired with Dave, my honey, the Golf 4 the Cure at our country club. It takes place on Saturday and I think we have it pretty well organized and ready to go. We're hoping to make at least $6,000. Our club is small so we are limited on the number of participants that we can accommodate.
Carole, I did see where you were in MN in the Brainerd area. We have spent lots of time up there as my son was the manager of the Parker Hannifin plant in Deerwood for nearly 4 years. Our middle grandson was born there. It is pretty country but the winter can be brutal. It snowed heavily one Easter when we were there.
Well, hello to everyone. If I get my life back together I hope to become a regular nuisance again on this thread!
Rita
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Rita it always good to hear from u and I'm sorry about u'r Dad so we certainly inderstand why u'r not on the computer so much--Good Luck
Reg I don't know what to say to help u---U'r poor Mom and no one seems to agree or able to help her in anyway. Her vomoting has to make her so week her organs have to suffer so. U are such a dear daughter if it was love that could make her better she'd be fine.(((prayers))) is all I can do and will do.
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Jackie I have an app'tment with a surgeon Aug 12th--he's on vacation now--so we'll go from there????
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Hi, checking in...it's a bit quiet here...
Rita, so good to see you. Sorry to hear your dad is having such a difficult time. I hope and pray that he is comfortable as can be...and I send you hugs and prayers.
Jackie, thanks for always being here for all of us...
Cami, hugs and prayers for you...hoping for some relief from your pain.
Happy travels, Carole...I just love summer!
I just got back from my outdoor course in Colorado and Utah. It was an adventure.
Good to be home.
Reg, it is hard to find words of comfort for all you have been through with your dear mom. Just know I am thinking of you and hoping she can turn a corner and have some good and carefree days. (you too)
Will catch up more soon....
Joan0 -
Whether you know it or not, one of the most important relationships in your life is with your Soul.
Will you be kind and loving to your Soul, or will you be harsh and difficult?
Many of us unknowingly damage our Souls with our negative attitudes and actions
or by simple neglect. By making the relationship with your Soul an important part of your life,
however, by honoring it in your daily routine, you give your life greater meaning
and substance. Use your experiences--all of them--as opportunities to nourish your Soul!
Elisabeth Kuebler-Ross0 -
Rita, thanks for checking in. I've been worried that something was wrong. I'm sorry to hear about your dad.
Sharon, you're in my thoughts. I keep hoping, as I know you do, too, that your mother's health will start to improve. The sitter doesn't sound like a person you'd trust to take care of your mother in your absence. You're well rid of her.
Camille, I'm thinking about you, too, and hoping that you can get relief from your pain.
Mommarch, you sound good. I'm glad you're having a happy summer and are enjoying your family.
Jackie, you always seem to know what to say to comfort those of us with problems. It must be a gift.
Chevy, I bet you'll be watching the Nascar race at Pocono on Sunday.
Jean, I guess you're glad to be back at home after a good trip.
Our cool weather continues. Last night I got up and got a blanket to spread over our comforter. It was in the 50's this morning. Right now it's about 70 degrees outside.
DH and I loaded up the laundry this morning and went to a nice laundromat in Park Rapids. Now the bed is made up with clean sheets and the clothes are put away. I even vacuumed the carpet today!
Tonight we're planning to drive to Monagha, about 30 min, and attend an outdoor concert. The group performing are Irish or at least their music is supposed to be Celtic. It's the sort of event where you bring your own chair.
It's hard to believe that July is already over and we're into August. According to the forecast for the next couple of weeks, our great weather is supposed to continue.
Hi to those not mentioned by name. Hasn't Bonnets been missing for a while? And Kaara, too.
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Thanks Carol, I am feeling better since I got off the ambien, cannot believe that the NP was so hell bent for it. I can get up and fix breakfast for DH and feel pretty good all day. Still have a few monemts of need to stretch out, but nothing like they were.
Tommorow I will drive to Siera Blanca and meet out GS Dad so he can go home. Then on Thurs. we will leave for Bryan, Tx and take our GD to the border of La, and MS to meet her Mom and David so she can get back to school, it has been a busy summer.
You know since Feb. 2011 I feel like I have lost at least a year of of my life if not more. I thank God that things are getting better. I told DH that it has been 44 years and now maybe we won't have to be tied down.
Hugs to all
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"Your present circumstances don't determine where you can go; they merely determine where you start."-- Nido Qubein0
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mommarch, so great to hear how things are going for you. You have an interesting question about the NP feeling strongly about your needing Ambien and pushing for it! Reminded me of being with a lady I sat with --- and listening to her NP say -- if I know ( in other words it was discussed with her by daughter ) about something I have to TREAT it. So.....now thinking maybe some things are pushed with the only reason being that a PROBLEM must be TREATED.
Well, the rest of this conversation is easy....what if the tx doesn't work well????How hard should something be pushed ?? When and under what circumstances will the "cure" be seen as not handling the "disease" or worse.
I also know that drug reps really push hard for their wares since the first ten years of a drug can produce a lot of income for the manufacturer. Just thinking out loud here about anyone pushing the newer things.
Just glad you are starting to experience much of the joy that so many of us do with our after tx. is basically over life. It is a bit of a challenge at first ( finding your new normal ) but after successfully going through cancer tx. you are anxious to be through and feeling well and happy. Something that would be so difficult if you are not sleeping and resting.
Probably said this 50 times at least here, but I do credit my ability to sleep with keeping me healthy and happy. Sleep rejuvenates in so many different ways and helps your body to make do what it has to to try and balance everything.....bodily repairs, extracting and using vitamins and minerals, cell rejuvenation.....a vital part of a well functioning human being. We gave it a major job to do while ridding ourselves of our cancer........so afterward we want our reward for all that hard work -- our life back. Hard to get if your not sleeping and resting correctly. I'm just thrilled for you.
Rita....you are on my mind -- always. Love to you and Dad.
Peace and love
Jackie
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Well, ladies. We went to the ER yesterday. Spent over 8 hrs there and still no answers. Even told us she wasn't technically dehydrated. Did CT scan of abdomen and pelvis, and then of head- just to be sure, and Xray of chest. At first ER dr, told me she couldn't do "every test" when I asked about head but then she ordered it. All fine. Urine infection clearing up. Blood work good. Gave her some potassium since a tiny bit low. Her red-blood cell related items were a little high but dr. didnt mention it. I know on her last report they were near the high end. Mom got some IV fluid there but she kept bending her arm and we didn't realize it but it stopped the flow. So, the 5 hr. bag only emptied 3/4 of the way!
She had a sedated day Wed. Wouldn't even pick up spoon to eat yogurt. So, we stopped the newest seizure med for one day to be sure it was that. It was. Dr. said since her sleepiness was that extreme after 2 pills it was unlikely she would tolerate it and since we are looking for a fast new medicine, the dr on-call switched the new med again. Started that last night. If all goes well, can taper the one we are trying to get rid of in 1 week. The on-call dr. also said to stop the back-up new med (the one that takes 6 weeks to get therapeutic). Said side effects can be cumulative. Not sure about that decision since it seemed to make her more alert, and because if the other new one doesnt work out, we just lost a week+ on the back-up one with supposedly very low side effects and no drowsiness.
Therapist told us of client with unexplained vomiting that turned out to be clot in artery to stomach. Called gastro and 5 min later had a script. Tried to get that ultrasound and a small bowel study done the next day (Friday) but hospital couldn't schedule in the order that was needed to do both tests in one day. I spent hrs. on phone trying to find place that could, dr. that had influence, etc. Miraculously, the phy. asst called me shortly after (no idea I had called the office already) and said she talked to dr. and instead of doing 2 tests, get CT. It isn't as detailed as the other tests but she said it would find anything major. I told her we were going to ER for fluids, so she called over to tell them were were coming. Finally, some action! Ironically, I asked for a CT scan 3 days ago after the UTI to see if kidney stones but dr. didn't order it since he didn't think she would drink barium. She didn't but they did the test anyway. Time for a gastro consult I think.
ER sent us home. Suggested a swallowing study even though the last few times she has thrown up, it has been after sudden movement. She lost 9 lbs already- down to 103 (she's under 5 foot). I hope she adjusts quickly to new med. I'm hoping how tired she was last night after taking it was just a fluke.
Thanks for all your prayers and positive thoughts.
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Reg I'm glad u went to ER but I don't understand, it sounds like tests came back OK--Could all of this be from some crazy meds that u'r mom has some type of allergies to? It's hard to believe she wasn't dehydrated bad--I don't know but someone has to find something to give u'r mom some relief (and u too)
Joan welcome back--I'm sure it's nice to be home. But everyone is traveling so much this summer I'm so glad for all of u and I think Kaara is too so she's on the go. Jackie and I wish u would put som pics up so we can dream. And Carole it's (I think) better to have cooler weather u can do more, cuz u 2 like to do alot and u'r so right about how jackie can write so soothing to us. She does have a gift.
As u know I see a new surgeon a week from Monday so I hope this all gets taken care of, I have a kidney moving around and a liver pushing into my ribs and a piece of colon moving up my side--there's more action inside of me than outside. Geeze my inners must have gotten board. LOL
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Morning gals.... Reg, sounds like at least you have a LITTLE good news. I think Cammi might be right..... (I don't know how THAT happened) But maybe some of her meds ARE causing problems. Hope you find some more answers soon.
I fooled around for over an hour, taking old tape off of a pipe leading down from the toilet tank, and re-taping it with duck tape, and it SHOULD work! I don't think it was leaking, from the pipe anywhere.... I think DH got over exhuberant with the shower hose, when he takes it over to clean out the toilet.... and he soaked everything! Even took up a tile on the floor, to dry it out.... So hopefully we got it fixed.
But toDAY I can hardly MOVE! MY back, and hips, and everything else are so stiff and sore! I was leaning over the toilet, but being in that position for so long must have DONE it! But I got it fixed..... that's all that matters.
Little Cammi.... I just KNOW they will find some way to fix you! What about Duck tape? Like I used? Just kidding! But we just gotta get you fixed! Next Monday, right? Then we have to go party!
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Chevy they make all kinds of really cute duct tape now and industrial strength, hey if that fixes me fine I don't care they might need to tape my liver back where it belongs, Hmm how do they move a liver just pick it up and move it??? Oh Oh this is starting to sound scary now. LOL
U'd better rest u'r bones today, u did to much yesterday--I hope u have a good day.
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one of my heavy-duty favorites:
Friendship is the joy, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring all right out as they are, chaff and grain together, confident that a faithful, friendly hand will take and sift them, keep what is worth keeping, and with a breath of comfort, blow the rest away.
George Eliot (Mary Ann Evans),0
