Linda661
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Posts posted by Linda661
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I can't really add anymore than what the others have said so far. I too don't know how I would have gone through this journey without this site -- I was at my wits end trying to find information, when I found this place "by accident." This site literally became my main source of information to cover with the doctors, immediate feedback with help (when every minute counts sometimes), and lots of valuable links to research information. I couldn't have advocated so well without it.
Hats off to you, Katie and Rick.
Linda
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Rob:
Welcome. Hang on to the positive every moment you can -- waiting on tests is hard, no doubt, but worrying isn't gonna' change anything....just will run you down.
Keep us posted. Everything's crossed for good scan results.
Linda
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Welcome. We're here anytime you need support.
Best wishes to you and your mom,
Linda
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Darn it (ok, I have to be politically correct in public 'ya know....)
. I agree, take a breather over the holidays and regroup for a new game plan. ((hugs)) Linda -
Traditional dinner at my house. One planned guest and few more who might show up for a bit (close neighbor who just lost her mom last Friday and another close neighbor friend, maybe).
All I can say is we are gonna' be cooking enough for an army (lots of leftovers to go around then too for everyone
): I'm doing the Turkey (stuffed), Virginia ham, cranberry sauce (the real deal there), some really neat snacks (I can't spell the "h" word right now for the life of me), and the condiments; my friend is doing the yams, green beans, mashed potatoes, gravy, bread, dessert. I have no idea how we are going to begin to consume all that food, but it's gonna' be fun to see how we put this all together -- of course, we are both avid red wine lovers so that's in the picture too. (already got the guest room ready there, just in case!)
A day of abundance, thanks, and great spirits shared with great friends. Even got the generator ready to go if another one of those flippin' storms tries to knock my power out again around here....NOTHING is going to spoil this day!
Linda
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I'm so sorry for your loss. Please accept my sincere condolences. Linda
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Shauna:
I'm sorry you're having a difficult time right now. That alone feeling is one of the most uncomfortable places to be inside.....
.Your husband can never give to you what you don't first know you need for him to do, no one can (that goes for friends, coworkers, other family members too).
When we know we have needs, but we don't know how to tell others how to support us, it just seems to end in frustration and aloneness. I would encourage you to try and talk with someone else as well....someone who might help you put into words what your needs are so you can break the cycle of things ending in arguement all the time.
Linda
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I'm so sorry for your loss, Chris. Please accept my sincere condolences for the loss of your dear grandmother.
Linda
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Happy Thanksgiving to you Maryanne, as well as the rest of my cyber family here. Linda
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Very exciting, Chanwit! I'm so happy to hear this and, yes, the mind set is a crucial part of this process as well (I personally believe it's the most important myself -- otherwise how do you explain all those drug companies needing to show effects which are significant beyond the "placebo effect" to get approval for use?).....when multiple treatments are going on at the same time it's, of course, difficult to tell what is actually responsible for improvement.
I'm so very pleased for your efforts and successes so far, I can't even begin to tell you.
Please keep us informed of such alternative therapy effects. This is of great substance, I assure you.
Linda
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Karen:
I am rather mute and helpless to respond to your post. All I can do is offer my prayers that this is temporary and things will turn around before you know it. I don't really ever say such things to folks here, even bother to post mostly when I don't have anything to offer....all I can offer is my silent support, once again, to another member....just this time, it's in print.
Linda
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Kim:
My sentiments are echoed by the others who have already posted. Hospice philosophy does not preclude measures that add comfort and quality of life....WBRT fits into that picture from what I know. It really sounds like your docs. are jiving with the radiation being a good thing/hospice referral combo., given the situation you have posted here.
I'm praying for relief for you and your family and to get some meaningful answers in this situation --
Linda
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Well, I was at my doctor's (again) yesterday...trying to deal with all the physical repercussions I've had due to dealing with so much stress and loss over the last 2 years. She Rx'd for me to follow the Mediteranean diet of all things -- what's that?, I said. Go get the book for $5 at your local bookstore, she said. So I hit the internet as soon as I got home out of immense curiousity since it won't be until Friday before I can get to a local bookstore. Basically, it's all about natural eating (forget low-fat, forget low-carb....balance, balance, balance)....but much, much more. A much more relaxed and healing lifestyle -- all about enjoyment of everyday in so many ways (not just food; your very environment)....and boy, does this idea just soooooo fit what I've been trying to do, big time. She also wanted me to exercise accordingly and lose weight....well, she doesn't know me that well on diet and exercise I already do (my life actually involves doing more than she Rx'd
): I think she thinks I must sit on my rear all day, eat eggs and bacon every day, and visit fast food joints often from my weight gain since all this stress hit and that's just not true at all. Oh well, I'll do what I have to on my own there.....Nonetheless, I think she has recommended something with really great potential. And get this, things that count as exercise on that program is simple walking, housecleaning, and lots of lovemaking of all things --....looking like a real enticing way of life to me that I haven't done in awhile
. Anyway, I know this is an early post from what I know so far, but for all of us that are hurting so bad now and just need a new way of life so we can heal......might be worth checking out.
Linda
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Chanwit:
I've bumped this one up as I'm curious whether you pursued this one any more after this post. The technology is quite intriguing, but I've never known anyone who actually tried it....did you and Lisa pursue it? Any comments on it, if you did?
Linda
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My mom had a severe reaction to taxol the first time as well -- heart rate zoomed way high, O2 sats dropped....her lips and fingertips turned blue, etc. Very frightening to me at the time. They were able to stabilize her at the cancer center and then challenge her as well. She did absolutely fine with the taxol from then on.
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I'm so happy you got your special sign, Martha. It's such a joy to get them so quick when we ask, isn't it? I too believe that our loved ones are always with us.
Linda
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I've been wondering too, Andrea....it's been awhile.
I hope our shellimacs is OK.
Linda
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Crystle:
I'm so happy to hear such great news from your latest post. You're not a brat, it's natural reactions in this journey -- advocating all the side effects and symptoms of things with this can be maddening. Showering always makes you feel better when you feel generally crummy...always bolsters the attitude too....good job!!!
Take good care and keep us posted.
Linda
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Kelly:
Excellent article. I did a bunch of posts in the Path Less Travelled Forum to highlight that there are real life dangers to caregivers, proven by research -- it's critical for caregivers to take care of themselves and, at times, that is really difficult if not impossible in this journey. Our overall healthcare system (and insurance support) is moving in a direction that puts even more burdens on family caregivers by default without anything in place to support the needs of the caregiver. I ran across numerous social service workers who kept warning me that caregivers often predecease the patient because of the stress load on them......they were really concerned about me as a consequence in my journey with this. I'm still here though and kicking really well....it's doable
All that said, know your personal limits and find a way to make adjustments in your life to accomodate -- it can be uncertain and uncomfortable at first, but it can happen. It's doable, just rocky and uncertain when you're in a particulary difficult individual circumstance -- sometimes you have to go "outside the box" in your thinking to do it.
Linda
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I'm so sorry to read this news. My sincere condolences to you and your family -- I cried at the story about the love in your pocket. What a special mom she was and still is.
Linda
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Nick:
I just ache everywhere reading what you've experienced here.......my thoughts and prayers are with those folks (and you, of course) -- I echo Kasey; how many expletives you can think of to give this disease? And here's to any others we all haven't thought of yet.....
Linda
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Crystle:
If it's really C-diff, that alone is gonna' take alot of fighting-spirit attitude out of her at the moment until that gets cleared up. It's nasty and just makes someone feel totally awful -- she's probably got some tummy and abdominal cramping to go along with it and that's probably why she doesn't feel like eating. It's not an infection, per se, it's an overgrowth of bad bacteria (some of which naturally live in our intestines all the time, but our other intestional flora keep it's population in check)
Randy already covered which antibiotics should be used for C-diff -- and those are the only ones that work, by the way (unless something new has emerged in the last 3 months I don't know about). And, unfortunately, antibiotics MUST be used to clear up C-diff. They usually start with Flagyl and if that doesn't clear it up, they go to Vancomycin (sometimes they go directly to Vanco.).
Randy also covered the critical importance of hydration. My mom had hydration therapy rather than constant IV like Randy's wife....all depends on the severity I guess. It's vital, because the "runs" are not treated to try and stop them with C-diff: those bacteria release toxins into the body that you want the body to get rid of, not try to have it stay inside longer by forcing a usual bowel function.
Yogurt is a good food too, as Randy mentioned -- it's got the "good intestinal stuff" in it naturally to help return the intestines to normal flora balance.
Hopefully her onc. is aware of the C-diff. situation. They may choose to reschedule chemo until this is under control -- getting dehydrated is not a good thing with chemo. either.
One last note about C-diff: it is HIGHLY contagious to others around your mom. One case of explosive, uncontrolled "runs" can spew C-diff bacteria for 3 feet in all directions. Very easy to reinfect oneself and those around her (especially those who are run down and may have supressed immune systems from things like stress or health issues of their own). Everything should be being kept really clean (bed sheets, clothing, any surface where food/liquids are being placed for consumption at bedside, floors, toilet, you name it) and hands washed often of anyone around her.
Hope this helps,
Linda
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You're right up there with eppie on the cute kittie pics these days Frank! Love it
Never did tell you that I love the newest pic of you with your great grand son too!
Linda
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Laurey:
I didn't lose a spouse, I lost both my parents within the last 2 years (mom to LC just over 4 months ago) -- common losses, yes. The same pain....no, it doesn't seem to be that way somehow from what I've read from other spouses here. All I can do is stand as a silent witness to "hear" your cries of deep pain in your loss and say that eventually you will come out of this in your own way and in your own time....different as it will be from me and other children who have lost parents to this disease. You will get through this, as much as it seems you won't now. We all will. Those before us did and we will too.
I'm glad you came back to share with us. No one should ever be left with a voice that's not heard and respected by others.
Gentle hugs,
Linda
. I agree, take a breather over the holidays and regroup for a new game plan. ((hugs)) Linda
): I'm doing the Turkey (stuffed), Virginia ham, cranberry sauce (the real deal there), some really neat snacks (I can't spell the "h" word right now for the life of me), and the condiments; my friend is doing the yams, green beans, mashed potatoes, gravy, bread, dessert. 
): I think she thinks I must sit on my rear all day, eat eggs and bacon every day, and visit fast food joints often from my weight gain since all this stress hit and that's just not true at all. Oh well, I'll do what I have to on my own there.....
my aunt passed today
in GRIEF
Posted
Tami, I'm so sorry to read this. Please accept my sincere condolences. Linda