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Thread: Life-Threatening Illness & Reality Check

  1. #351
    Cyburbian Michele Zone's avatar
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    My father is 82 and half the time doesn't know who I am. When I lived with my parents earlier this year, it was not unusual for him to ask me if I had seen Michele as he had mail for her or the phone was for her. Because my oldest son has executive function difficulties and I know a reasonable amount about the different kinds of memory we all have, I was never disturbed by such things. I realized that in some way he knew and trusted ME, he just couldn't match up my face with my name and seemed to think I and this Michele person were two different people. (Certain supplements helped him some and I think more could be done if my mother believed some of the things I said. <shrug>)

    Quote Originally posted by Bear Up North View post
    Update on Katie's condition.....it is NOT cancer, although she is filled with ovarian cysts, etc. She has to decide on the type of surgery to have, probably in the early part of 2007. Full hysterectomy or partial.

    Bear
    Not that it is any of my business and not that you asked, but I highly recommend she get a book called "How to avoid a hysterectomy" to help her with this important decision.

  2. #352
    Cyburbian Emeritus Bear Up North's avatar
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    Happy Anniversary To Me !!!

    Two years ago this week this Bear trudged into the Bone Marrow Transplant Unit of the University of Michigan's Cancer Center. I guess I can consider this a happy and healthy (somewhat) anniversary. It sure looks (and feels) like everything worked like it was supposed to.



    My hair (what little there is) is back. My weight is back. I don't smell like tomatoes anymore. (Bone Marrow Stem Cell Transplant function leaves the patient smelling like tomatoes.)

    Obvious that the tranny did not affect keyboard finger functionality.

    Obvious that you all still have this Bear to kick around.

    Our long national nightmare is not over.



    Bear
    Occupy Cyburbia!

  3. #353
    Cyburbian SGB's avatar
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    I suspect I speak for many when I say this: BUN, you are an inspiration! Congratulations on this important anniversary.

    Quote Originally posted by Bear Up North View post
    Two years ago this week this Bear trudged into the Bone Marrow Transplant Unit of the University of Michigan's Cancer Center. I guess I can consider this a happy and healthy (somewhat) anniversary. It sure looks (and feels) like everything worked like it was supposed to.



    My hair (what little there is) is back. My weight is back. I don't smell like tomatoes anymore. (Bone Marrow Stem Cell Transplant function leaves the patient smelling like tomatoes.)

    Obvious that the tranny did not affect keyboard finger functionality.

    Obvious that you all still have this Bear to kick around.

    Our long national nightmare is not over.



    Bear
    All these years the people said he’s actin’ like a kid.
    He did not know he could not fly, so he did.
    - - Guy Clark, "The Cape"

  4. #354
    Cyburbian Emeritus Bear Up North's avatar
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    Another Sad Event With My Brother

    On Thursday evening the family all met at a restaurant for a "send-off party" for my son and his family (moving to Portland, OR). My older brother was there. His Alzheimer's Disease has worsened.

    This is a 63-year old man, a former college professor, a well-known actor and director in regional theater (Cleveland area), an excellent "punster".

    Now he is a "shell". He sat at the end of the 13-person table, doesn't talk. His grandson stood up so my brother stood up.....together they walked to the men's room. It was a smaller restaurant and he became confused (lost) on the way back from the rest room.

    We tried to engage him in conversation.....silently hoping that a sentence we utter will be the "breakthrough" and all will be normal again. Not to be.

    It is so tough on his wife and the grandson.....care for 24/7.....watching, making sure he doesn't wander.

    I am having a tough time with this. For all practical purposes....and this could sound cruel.....it is worse than death. With death comes the eventual "closure". With Alzheimer's "closure" is nowhere in sight.

    Sorry about crying on the collective shoulder of Cyburbia......

    Bear
    Occupy Cyburbia!

  5. #355
    Cyburbian
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    Bear, I'm sorry that your family is going through this. I bet this is more than frustrating for you all, and I know what you mean about this being worse than death.

    Maybe a consolation could be that your brother doesn't realize what he is experiencing. Well, at least is doesn't seem like it. It sounds like you are still treating him with dignity.

    Continue to be a support to your sister in law. She is lucky to have you all.

    Kelly

  6. #356
    Cyburbian Emeritus Bear Up North's avatar
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    This year is not starting well. In addition to dealing with my brother's Alzheimer's Disease we are now dealing with a more-severe reoccurence of Katie's MS. She has had trouble walking, lifting one leg (such as to get in my truck), sleeping. Severe back pain.....we thought an indication that she hurt herself somehow.

    But, in discussing the symptoms with her MS doctor, he said he needs to see her.

    MS is such a strange disease.....some people remain at an early stage and live very-normal lives....some slowly advance to more-severe stages.....some progress rapidly to the very-severe (wheelchair) stages.

    We thought (hoped) that Katie's MS would remain in that lower stage.....her position since she was diagnosed ten years ago.

    She is bummed and I have been trying to cheer her up.

    Bear
    Occupy Cyburbia!

  7. #357
    Cyburbian
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    I'll add her to my prayers.

  8. #358
    Cyburbian Emeritus Bear Up North's avatar
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    Just when Katie's MS symptoms ease off this Bear starts to have periodic episodes of night sweats. Night sweats are a symptom of Hodgkin's. Grrrr....

    Next Monday I have a PET scan scheduled. Just in the nick of time? Grrr.....
    The sweats make me wonder if another bone marrow tranny is in the cards. Yuck.
    _____

    Anybody notice that potential Republican prez candidate Fred Thompson was diagnosed a couple years ago with Non-Hodgkins? That would certainly make any VP running mate for him a critical issue.
    _____

    So it goes.

    Bear
    Occupy Cyburbia!

  9. #359
    Cyburbian DrumLineKid's avatar
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    BUN, I think I can feel some of your feelings, frustrations. I have been through a lot, kidney failure at 24 just after our first wedding anniversary, 18 years on dialysis, three kidney transplants (the last successful in 2000), a car crash in 1/06, loss of the use of an arm, balance, a job....basically hell.

    I keep telling myself and anyone who dares to show pity, "we all have a cross to bare".




    Please don't take this as disrespectful, but I will always think of it from now on as "we all have a cross to Bear" and it will make the moment more of something only I will know.

    Be well,

    DLK
    "There are people in every time and every land who want to stop history in its tracks. They fear the future, mistrust the present and invoke the security of a comfortable past which, in fact, never existed." RFK

  10. #360
    Cyburbian Plus PlannerGirl's avatar
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    We found out last week my dad has colon cancer, jury is of course still out on spreading, stage etc. He talks to the doc today to figure out surgery and a plan. Needless to say Im jumping a flight to Fla as soon as I get some details. The waiting is killing me.

    Come to find out his family is eat up with colon and other lower body cancers, no one has said a thing about it so I stand like a 70% higher chance of having colon cancer now, at 33 but you can bet your bottom Im headed for a test as well as soon as I get back from Fla I dont care if the Ins wont pay for it.
    "They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety." Ben Franklin

    Remember this motto to live by: "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive well preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming 'WOO- HOO what a ride!'"

  11. #361
    There's not much I can say, Bear & PG - what can people say to make it better? ANd I'm way too far away to offer any real help. But if you ever need to talk, I'm happy to listen. Or in this case, read.
    Glorious Technicolor, Breath-Taking CinemaScope and Stereophonic Sound!

  12. #362
    Cyburbian Planit's avatar
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    Quote Originally posted by PlannerGirl View post
    We found out last week my dad has colon cancer, jury is of course still out on spreading, stage etc. He talks to the doc today to figure out surgery and a plan. Needless to say Im jumping a flight to Fla as soon as I get some details. The waiting is killing me.

    Come to find out his family is eat up with colon and other lower body cancers, no one has said a thing about it so I stand like a 70% higher chance of having colon cancer now, at 33 but you can bet your bottom Im headed for a test as well as soon as I get back from Fla I dont care if the Ins wont pay for it.
    Right there with you. My first 'scope' at 35, then 40, now its time for another and they'll be at more frequent intervals. Make sure you tell the Doc there's a family history and he documents it, no problem with insurance.
    "Whatever beer I'm drinking, is better than the one I'm not." DMLW
    "Budweiser sells a product they reflectively insist on calling beer." John Oliver

  13. #363
    Cyburbian Emeritus Bear Up North's avatar
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    Grrrrrrrrrrrrrrrrrrrrrr.......

    This Bear is gonna growl.

    I have sugar. It's a small number and should be controllable with a better diet, but the last thing I need is more gol daxx health issues. (It does run in my family and I thought I was lucky to not have it. Grrr....)

    Can I blame it on the bone marrow transplant? Probably not.

    Oh well, cancel my Tootsie Roll on the "island thread".
    _____

    Still no PET Scan. Twice we have had scheduling issues. Probably take the scan next week.
    _____

    I need to slug something.

    Bear
    Occupy Cyburbia!

  14. #364
    Cyburbian Plus
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    Quote Originally posted by Bear Up North View post
    I have sugar. It's a small number and should be controllable with a better diet, but the last thing I need is more gol daxx health issues.
    Sorry, but welcome to my life.
    Oddball
    Why don't you knock it off with them negative waves?
    Why don't you dig how beautiful it is out here?
    Why don't you say something righteous and hopeful for a change?
    From Kelly's Heroes (1970)


    Are you sure you're not hurt ?
    No. Just some parts wake up faster than others.
    Broke parts take a little longer, though.
    From Electric Horseman (1979)

  15. #365
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    HEADLINE: Heart Attack Risk Seen in Drug for Diabetes
    http://www.nytimes.com/2007/05/22/bu...ei=5087&#37;0A

    Anybody else taking Avandia ?
    I have been on it for a couple of yrs now.
    Last edited by JNA; 22 May 2007 at 8:47 AM.
    Oddball
    Why don't you knock it off with them negative waves?
    Why don't you dig how beautiful it is out here?
    Why don't you say something righteous and hopeful for a change?
    From Kelly's Heroes (1970)


    Are you sure you're not hurt ?
    No. Just some parts wake up faster than others.
    Broke parts take a little longer, though.
    From Electric Horseman (1979)

  16. #366
    Super Moderator kjel's avatar
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    Quote Originally posted by JNA View post
    HEADLINE: Heart Attack Risk Seen in Drug for Diabetes
    http://www.nytimes.com/2007/05/22/bu...95e&ei=5087%0A

    Anybody else taking Avandia ?
    I have been on it for a couple of yrs now.
    Nope....I just take the Metformin XR. The docs wanted to put me on Avandia but owing to having to take lisinopril it was a no-go. Now I am glad.
    "He defended the cause of the poor and needy, and so all went well. Is that not what it means to know me?" Jeremiah 22:16

  17. #367
    Cyburbian KSharpe's avatar
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    This thread is my reality check! This year I got optical neuritis, which is a common indicator of MS, and I have like 80% chance of developing it within 5 years. But when I hear all the stories of people with MS who really thrive, I can't feel unlucky, especially compared to what some of you have been through. I'm humbled by such strong people.
    Do you want to pet my monkey?

  18. #368
    Cyburbian cch's avatar
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    Quote Originally posted by KSharpe View post
    This thread is my reality check! This year I got optical neuritis, which is a common indicator of MS, and I have like 80% chance of developing it within 5 years. But when I hear all the stories of people with MS who really thrive, I can't feel unlucky, especially compared to what some of you have been through. I'm humbled by such strong people.
    My MIL has MS. I think she was diagnosed about 13 years ago. They are coming out with new treatments and drugs all the time. She's continued to be able to work full time, take lots of trips and live a pretty full life. If anything is slowing her down it is the fact that she is obese and aging, and we're afraid her weight is more detrimental to her than the MS.

    I know everybody is different, but it definitely doesn't have to put a damper on your quality of life, that is, if you even do develop it. Heres hoping you are one of the 20%.

  19. #369
    Cyburbian KSharpe's avatar
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    Quote Originally posted by cch View post
    My MIL has MS. I think she was diagnosed about 13 years ago. They are coming out with new treatments and drugs all the time. She's continued to be able to work full time, take lots of trips and live a pretty full life. If anything is slowing her down it is the fact that she is obese and aging, and we're afraid her weight is more detrimental to her than the MS.

    I know everybody is different, but it definitely doesn't have to put a damper on your quality of life, that is, if you even do develop it. Heres hoping you are one of the 20%.
    You're very kind....my neurologist was kind of a riot. He said "You probably think of someone with MS in a wheelchair, pissing on herself. That's not how its going to be with you." Basically, he said that the new drugs are awesome and I shouldn't be afraid. So I'm not!
    Do you want to pet my monkey?

  20. #370
    Cyburbian Emeritus Bear Up North's avatar
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    KSharpe.....Hang in there. Katie has been able to control her MS with a drug, I believe it is called Rebiff. She has had a few "numb" nights (don't make a joke, RJ ) but generally her problems have not progressed. Yes, there are a ton of drugs that are coming out. Medical technology really makes a difference.
    _____

    This Bear did the PET scan a couple weeks ago. Now, the University of Michigan's Cancer Center wants to see me, to go over the results. Preliminary look is that everything is "stable", but they don't say much over the teleyphoney.

    Bone Marrow Transplant Survivor !!! Woo-hoo !!!



    Bear
    Occupy Cyburbia!

  21. #371
    Cyburbian Plus
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    Can you believe how the Avandia (Diabetes oral drug) story has continued.

    I have a scheduled appointment (before this story broke) with my Dr. in 2 weeks
    and will have a few questions about the reported increased risk to cause heart attacks or other cardiovascular problems.

    If you were me would you be concerned and what question would you ask ?
    Oddball
    Why don't you knock it off with them negative waves?
    Why don't you dig how beautiful it is out here?
    Why don't you say something righteous and hopeful for a change?
    From Kelly's Heroes (1970)


    Are you sure you're not hurt ?
    No. Just some parts wake up faster than others.
    Broke parts take a little longer, though.
    From Electric Horseman (1979)

  22. #372
    Cyburbian Plus Zoning Goddess's avatar
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    Quote Originally posted by JNA View post
    Can you believe how the Avandia (Diabetes oral drug) story has continued.

    I have a scheduled appointment (before this story broke) with my Dr. in 2 weeks
    and will have a few questions about the reported increased risk to cause heart attacks or other cardiovascular problems.

    If you were me would you be concerned and what question would you ask ?
    I don't have diabetes but I'll take a shot. Of course, you want to know your doc's opinion about the pluses vs the minuses. Or would an alternative treatment be just as effective? I guess sometimes one thing works and you have to stick with it despite a known risk. Has he/she gotten any warning circulars with possible side effects that haven't been publicized?

    My major concern with doctors is how well they know me and how much time they spend with me. If they always act like they just met me, and I've been a patient for 10 years, I would think I'm not getting a good analysis from them.

    Of course, you have to find out if there will be any lasting effects on your Cyb typing fingers....

  23. #373
    Super Moderator kjel's avatar
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    Quote Originally posted by JNA View post
    Can you believe how the Avandia (Diabetes oral drug) story has continued.

    I have a scheduled appointment (before this story broke) with my Dr. in 2 weeks
    and will have a few questions about the reported increased risk to cause heart attacks or other cardiovascular problems.

    If you were me would you be concerned and what question would you ask ?
    I don't take Avandia, I elected to just stick with the Glucophage XR since it has worked well to help maintain my blood sugar along with diet. I think the main thing I would ask for is a screening to detect any potential side effects, discuss the benefits/risks of continuing on with the drug, and alternatives to the drug. Did you take another type of drug before Avandia and how did it work for you?
    "He defended the cause of the poor and needy, and so all went well. Is that not what it means to know me?" Jeremiah 22:16

  24. #374
    Cyburbian cch's avatar
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    I mentioned on this thread awhile back how my mom is on dialysis, awaiting a kidney transplant. Well, one of the nurses at the dialysis center told her that she's thought long and hard, and decided she wants to see if she can donate one of her kidneys to my mom. This nurses husband passed away a year ago, and after that she started considering it. There are dozens of people on dialysis at the center, and I'm not real sure why she picked my mom, except most of the other patients have other health problems that prevent them from being eligible for a transplant, and of those eligible, my mom is the youngest one there, and she's been going there the longest. It is a wonderful thing, but it makes me feel kind of strange to have someone I've never met make such a sacrifice for my mom.

    Of course, it may not work out. Later this week they are both submitting blood to be tested, and if that matches up the nurse still needs a physical to determine if she is in shape enough to donate. My whole family is floored by the offer, and my mom is trying hard not to get her hopes up. She's been on dialysis for over 5 years now.

  25. #375
    Cyburbian Emeritus Bear Up North's avatar
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    cch.....I know that I speak for many in this forum.....we wish for the absolute best for your family. It would be great if it works out.

    Bear
    Occupy Cyburbia!

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