Linda661
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Posts posted by Linda661
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I'm up and dressed right away.
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I'll bring the crockpot with the finished makin's for french dip sandwiches.
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Peachy:
First off, welcome to the boards (even if all of us would prefer not to need them
).As others have said, this really comes down to your personal choice -- there is no right or wrong answer to your question except for what your heart and soul wants to do -- it's your life.
Maybe I misunderstood what I read, but I noticed how you said that you hesitate to put your FAMILY through this ordeal. Others have mentioned how many go through treatment with relatively few side effects....
As someone who has been on the caregiver side of this experience: yes, it was hard in our particular situation, but I wouldn't have wanted to do it any other way than to support my mom through it. Even at the point when my mom decided not to pursue further treatment, I had researched options available for her that the docs agreed were worth a try if she ever changed her mind back....it was a priveledge to let her make her decisions and support her journey.
Linda
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Gilligan's Isle
"It's a beautiful day in the neighborhood....a beautiful day for a neighbor....would you be mine, could you be mine...."
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Wow, didn't expect to see this bumped....
Anyway, little update: it was a craving that left after about 2-3 months. No idea why.
Had that craving thing happen once with avocadoes during the whole process of losing my dad -- never bought an avocado in my life and all of a sudden I couldn't get enough of them for about 4 months (and I mean consuming 2-3 of them at a meal); interesting that I lost over 25 pounds during that time as well (and needed to lose weight) and felt great mentally. Then the craving suddenly stopped and to this day I'm not attracted to them either.
The body knows what it wants from what I can tell if we just listen to it rather than everyone else's opinion of what we should or should not consume.
Linda
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Teri:
I am deeply saddened to read this news -- Bill earned a special place in my heart from his posts here; a truly delightful and insightful being. Please accept my sincere condolences for your loss of this most wonderful guy in your life.
Linda
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Here's one question that I asked my hospice organization and it appears to be undefined as of yet by the hospice philosophy as a whole:
Will you allow continuance of oral "treatments" such as Tarceva while in hospice care? If so, will you cover the cost of this medication?
My hospice didn't have a clear answer to that one at the time -- because meds such as Tarceva are not generally considered "curative" treatment, it's worth the ask.
Another great question is: What support do you have available for family members/family caregivers? Hospice philosophy is geared to address the needs of the patient AND the family.
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I wish I had an answer to that one; and I read responses to recent posts on the topic recommending counseling and admonishing both parties for their actions in "the heat of the moment." This is serious business, this potential effect of this dx...not just LC, but cancer in general. I went through it myself, and it's not easy...what is so devastating is that to just roll over accept actions from our loved one as if it's OK isn't gonna' work worth a hill of beans and counseling doesn't solve a d*mn thing with it either (been there, done that, several times over in the process). What saved my behind was that a medical professional listened in hidden around a corner when neither my mom nor I knew anyone was around (several times over); otherwise I had no leg to stand on in the world at large on what I was telling anyone: That included our onc. telling my mom that perhaps I was making it up when I brought it to their attention at an appointment really early on in its manifestation -- not the best for inspiring confidence that the caregiver gets any sort of real support happening for things.
I agree that violence in response to violence isn't the answer -- try just leaving the scene and being pursued in that anger by your loved one...threats called after you too to the point you are afraid to be around them at all, yet their future well-being depends on you and you want all the best for them too, so you spend 110%+ of your time seeing that they have everything they need, including future medical options that the docs won't even offer up as hope.
If not taken seriously, this anger/mean thing can have dire consequences for the survivor caregiver -- it bankrupted a friend of mine. Nasty, cruel behavior in private for her...but get anyone else in there (professionals and other friends alike), and things appeared just peachy. My friend was urinated on, beaten on, had things thrown at her, had her entire life savings blown on nonsense purchases that no one would dare question at the time from her ill loved one -- that's sheer and utter nonsense. My friend had NO TIME to do anything about it either (to stand up for herself and bring it to the forefront of someone's attention) -- everything had to go to working or caregiving. I wish I had had a deeper friendship with this person when she went through this -- I could have helped her better then get out of the mess she is in today.
While this probably is a personal vent of mine full of personal hurt at the moment, I wish others would take it more seriously if/when it emerges. I doesn't necessarily happen to everyone, but when it does, it needs serious attention by the medical/friend community at large -- the caregiver's personal well-being, medical status, and future just may depend on it.
Linda
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Grace:
I'm so sorry to read of your loss. It sucks quite frankly. But I'm glad we were here to support you and Carlton as much as we could, moment by moment.
You take good care and keep us posted on your needs -- we're still here, always.
Linda
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Barb:
First, know that I am probably an oddball in the group when it comes to your question here. Know up front that, while I grew up in and have studied the bible and all things religious (I grew up a strict Catholic), I find them lacking a whole bunch. Nevertheless, I am a HUGE lover of what we term God....HUGE, HUGE in my being.
That said, and this is from my personal experience (not heresay and conjecture or belief with nothing in my being to back it up by)..... you just continue with what you left off with after the passing of your physical body. You are an eternal entity who is loved immensely by God -- Jesus was not the only child of God and he is not necessary to save you or do anything in particular....you are enough -- you are the "apple of God's eye" always. (I'm not going to banter Bible scripture on that one, but Jesus himself said such things at length in the New Testament -- he even said that in his works we could do and do more....on and on it goes there). Jesus is a brother, if you will....a loved being, no different than the rest of us.
Heaven and Hell is relative to our beliefs -- there is no hell as we understand it in a religious construct. Anyone know what the word hell really means? It was a term coined long ago for the dead buried in a shallow grave where the coyotes and other creatures could ravage a passed body....that's it. There is no such thing as eternal damnation as most subscribe to.
Now that I have opened myself up to tremendous vengence in many ways, I will be happy to entertain responses in private....this public board is not the venue for such things.
Barb, all I'll say is that you are always loved by that which created you (and all of us) -- you will go back to that source to review what you have done, contemplate what you could have done different, and continue on with that wonderful thing we call life.
Linda
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Grace:
I'm so sorry to hear this news and I so wish Carlton and your family wasn't going through this. My thoughts and prayers are with all of you.
Linda
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Some of them did sound tricky Larry...there were several I skipped and didn't even attempt my answer until the end...was actually surprised I got 100%, to be honest...I don't recall my own state exam sounding quite so vague, but it has been awhile.....
Linda
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100% here
. Thanks for this Maryanne, it was nice to refresh the mind on the rules of the road. -
I think your mom's got it right on the crystal thing: though I'm not sure whether it's "broken" or not. My dad had bad vertigo (it was called "benign positional vertigo") and it also related to the crystals in the inner ear getting out of whack. I never went in with him for the treatments, but he said it involved a professional holding his head in various positions to correct those crystals. Supposedly just a very few treatments (many times one) cure the problem for most people....my dad needed several over the years; one treatment would work for awhile, then the vertigo would come back so he'd get another one and be fine again.
Keep us posted.
Linda
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Ohhh...I forgot to mention the potted catnip for the kitty! (does that count)? Of course, it looks like a bunch of 1 inch green sticks about now.....
Linda
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Ummmm...I'm with Snowflake on the live thing
Ok, I've got 6 of them in various stages of health:
Peace Lilly -- so on it's way out now (had it for 17 years).
Philodendron -- looking happy after a recent scare of almost losing it. Been around for 16 years or so.
English ivy -- rockin' on with spider mites at the moment. Christmas 2006 gift (already lost it's miniature rose mate that accompanied it in that gift).
Money Tree -- Christmas 2006 gift from a friend: looking happy and I'm not sure what to do with it; never heard of it before!
Jasmine -- oh so really fine and filling my soul with its intoxicating perfume now.
Amaraylis (sp) -- blooming like mad now.
Linda
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Sonia:
To my knowledge, this is a side effect of treatment -- whether it's blood count related or not, I'm not sure. Our chemo center always had a host of heated blankets for patients -- I always had to put several on my mom during treatment and get her extra warm stuff for every day. Not really sure that it's a circulation issue....more a side-effect issue.
When in doubt, ask the onc. so that you are not staying concerned about this. There may be something more medicine can do to help alleviate the cold discomfort.
Linda
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Thanks Becky Snowflake for posting this opportunity to...well, bring out the Frank we all knew and loved, each in our own way, especially since we all didn't know him the same (I'm a much younger member than many of you and have no clue what the chicken cult is!
) I came from Frank's neck of the woods: Valencia was practically in my backyard when I last lived in PA (I was born and raised in PA for well over 25 years of my life).Anyway, I am literally crying doing this, but here's Frank's most impactful post on me -- while he influenced me more than this in many ways, I cherish this post of his and keep it very close to my heart (from Path Less Travelled Forum, 9-6-06):
Playing A Violin With Three Strings
Jack Riemer
On Nov. 18, 1995, Itzhak Perlman, the violinist, came on stage to give a concert at Avery Fisher Hall at Lincoln Center in New York City.
If you have ever been to a Perlman concert, you know that getting on stage is no small achievement for him. He was stricken with polio as a child, and so he has braces on both legs and walks with the aid of two crutches. To see him walk across the stage one step at a time, painfully and slowly, is an awesome sight.
He walks painfully, yet majestically, until he reaches his chair. Then he sits down, slowly, puts his crutches on the floor, undoes the clasps on his legs, tucks one foot back and extends the other foot forward. Then he bends down and picks up the violin, puts it under his chin, nods to the conductor and proceeds to play.
By now, the audience is used to this ritual. They sit quietly while he makes his way across the stage to his chair. They
remain reverently silent while he undoes the clasps on his legs. They wait until he is ready to play.
But this time, something went wrong. Just as he finished the first few bars, one of the strings on his violin broke. You
could hear it snap - it went off like gunfire across the room. There was no mistaking what that sound meant. There was no mistaking what he had to do.
We figured that he would have to get up, put on the clasps again, pick up the crutches and limp his way off stage - to either find another violin or else find another string for this one. But he didn't. Instead, he waited a moment, closed his eyes and then signaled the conductor to begin again.
The orchestra began, and he played from where he had left off. And he played with such passion and such power and such purity as they had never heard before.
Of course, anyone knows that it is impossible to play a symphonic work with just three strings. I know that, and you know that, but that night Itzhak Perlman refused to
know that.
You could see him modulating, changing, re-composing the piece in his head. At one point, it sounded like he was de-tuning the strings to get new sounds from them that they had never made before.
When he finished, there was an awesome silence in the room. And then people rose and cheered. There was an extraordinary outburst of applause from every corner of the auditorium. We were all on our feet, screaming and cheering, doing everything we could to show how much we appreciated what he had done.
He smiled, wiped the sweat from this brow, raised his bow to quiet us, and then he said - not boastfully, but in a quiet, pensive, reverent tone - "You know, sometimes it is the artist's task to find out how much music you can still make with what you have left."
What a powerful line that is. It has stayed in my mind ever since I heard it. And who knows? Perhaps that is the definition of life - not just for artists but for all of us.
Here is a man who has prepared all his life to make music on a violin of four strings, who, all of a sudden, in the middle of a concert, finds himself with only three strings; so he makes music with three strings, and the music he made that night with just three strings was more beautiful, more sacred, more memorable, than any that he had ever made before, when he had four strings.
So, perhaps our task in this shaky, fast-changing, bewildering world in which we live is to make music, at first with all that we have, and then, when that is no longer possible, to make music with what we have left.
Play on Frank....you've got all your strings back now and I just know you're making tremendous music even better than before....chocolate donuts and beer included....what a tune I cherish Linda
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Patti:
I'm so sorry to read this -- thank you so much for letting us know. Frank was (and still is) a very special presence to all of us. I admired so much his humour and lightheartedness in the midst of this dx -- where he found some of the humour he listed here, I'm not sure, but he sure brightened many of my days right up when I came here just wanting to be so down sometimes.
I also admired the depth of his beautiful being -- the poems and such that I've read in his posts...those were awesome to me and moved me in ways I still don't totally understand.
Please accept my sincere condolences to you and your family at your tremendous loss.
Linda
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Betty:
I'm so sorry to read what you are dealing with right now; my thoughts and prayers are with you and your sister.
Linda
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So glad to read that Carlton is home. Keeping the prayers coming.....
Linda
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A lot of it seems to depend on how cold it is outside. Normally, I set for 68 during the day and 65 at night. When it got into the teens and really windy around here this winter, I kicked it up to 70 'round the clock...somehow I didn't feel as warm inside with all that cold and wind outside.
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Amy:
Your phrase "I want to be there" and "it's killing you" not to be there... says it all -- find a way to go, now. If you've read any of KatieB's posts on what to do with dads who just want to be strong and hide info......tell him you need this and you need to know for you, not that he needs you to be there (seems to work from what I've seen).
Do keep us posted. Many hugs,
Linda
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I'm sorry to read of the loss of your husband Jim. Please accept my sincere condolences and prayers of peace and comfort for your family.
Linda
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. Thanks for this Maryanne, it was nice to refresh the mind on the rules of the road.
Do you take a STATIN?
in GENERAL
Posted
My mom had been taking Lipitor for some years before her LC dx.
Interesting that my dad had been put on a statin about 6 months before his brain cancer emerged out of the blue. I had found some research at the time that suggested that statins could actually encourage the growth of the type of cancer he had if someone was already predisposed to its occurance -- scary stuff. Sad thing is, he didn't really need the statin in the first place: his cholesterol was in perfect range for a heart patient (i.e. their ideal numbers are lower than the "average" person), but his cardiologist put him on it just to drive those numbers down even lower.
Linda