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Life-Threatening Illness & Reality Check

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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>)

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.
 

Bear Up North

Cyburbian Emeritus
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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. :-c (Bone Marrow Stem Cell Transplant function leaves the patient smelling like tomatoes.)

Obvious that the tranny did not affect keyboard finger functionality. :-D

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

Our long national nightmare is not over.

;)

Bear
 

SGB

Cyburbian
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I suspect I speak for many when I say this: BUN, you are an inspiration! Congratulations on this important anniversary.

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. :-c (Bone Marrow Stem Cell Transplant function leaves the patient smelling like tomatoes.)

Obvious that the tranny did not affect keyboard finger functionality. :-D

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

Our long national nightmare is not over.

;)

Bear
 

Bear Up North

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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
 

kms

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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
 

Bear Up North

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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
 

Bear Up North

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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
 

DrumLineKid

Cyburbian
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149
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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
 

PlannerGirl

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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.:-{
 

Journeymouse

Cyburbian
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440
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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.
 

Planit

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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.:-{

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.
 

Bear Up North

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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
 

KSharpe

Cyburbian
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744
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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.
 

cch

Cyburbian
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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.

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%.
 

KSharpe

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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!
 

Bear Up North

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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
 

JNA

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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 ?
 

Zoning Goddess

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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 ?

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....
 

kjel

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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 ?

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?
 

cch

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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.
 

Bear Up North

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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
 

KSharpe

Cyburbian
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God, that makes me cry. What a wonderful person that nurse must be. Will pray for your mom and you.
 

JNA

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Talked with Doctor yesterday about being on Avandia (Diabetic) -

He was not worried about me being on it - blood chem work up was good except my A1c. :(

If there was a serious concern/issue he would have contacted me. He is also part of a large practice and collectively they had not raised any group alarm about it either.

He said there many pieces to the total story - rush to judgement over a 1&#37; ?statistical difference between studies in the MI/Heart disease occurance. But NO further background on the people that experienced this, so really not sure if it affects everybody or a very small population.
 

Bear Up North

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Updates

As of July 21, here are some updates:

Katie's brother is dying of lung cancer. He is comfortable with that thought, very willing to allow us to arrange for daily visits from hospice. He likes those that arrive and help him with some basic needs. (His doctor is giving him about a half-year.)

He has requested that Katie and this Bear hold a family reunion. We have cancelled some other plans and will be doing that for him in mid-August. We will have the reunion at this Bear's place.....BBQ chicken, brats, my special burgers. :p
_____

Right now any surgery for Katie is on HOLD, pending some more tests in about a month. The original plan was for a hysterectomy, but some good original test results will probably scrap (sounds like "scrape" :-o) that plan.
_____

This Bear's brother's situation, with very severe dementia, is difficult to grasp. Less than 3 years ago he was a retiring teacher, a published author, physically active, loved to fish, well-known and respected in the area he lives (Painesville, OH) and in the place he taught for years (the high school in Fairport Harbor, OH).

His dementia is so bad that his wife has to shower him three times a day, he cannot be left alone (at all), he remembers nothing, he doesn't talk. His wife is in the process of "attempting" to make arrangements for his care in a facility.

My brother is just 63 years of age.
_____

And this Bear? Doing great. It has been two and half years since the bone marrow transplant. My weight is a bit higher than it should be, I do get tired at the end of a long work day (but I am going to be 59 soon, I get a pass ;)).....but I have encountered none of the signs that Hodgkin's Lymphoma has returned. Those signs would be excessive itching, extreme exhaustion, night sweats.
_____

Even with all these bumps in the road, this Bear's wander through the forest of life has been fun. Gotta love those fresh blue-berries! :)

Bear
 

Zoning Goddess

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Bear Up North said:
This Bear's brother's situation, with very severe dementia, is difficult to grasp. Less than 3 years ago he was a retiring teacher, a published author, physically active, loved to fish, well-known and respected in the area he lives (Painesville, OH) and in the place he taught for years (the high school in Fairport Harbor, OH).

My mom's is not that far along, but it is disheartening to see how she has declined mentally in just 2 months. Can't remember who took her to a party just hours ago, can't remember family members' names consistently, can't figure out the t.v. listings, has become very demanding and defensive, etc. Right now she is in the health center at the retirement complex she moved to in May, after a couple falls the week before last. But the admins there want to move her back to her apartment on Monday. We simply cannot afford round the clock care and will likely just have to take our chances. In the meantime, my brother is trying to find an opening at a place somewhere between a nursing home and independent living.
 

kjel

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My mom's is not that far along, but it is disheartening to see how she has declined mentally in just 2 months. Can't remember who took her to a party just hours ago, can't remember family members' names consistently, can't figure out the t.v. listings, has become very demanding and defensive, etc. Right now she is in the health center at the retirement complex she moved to in May, after a couple falls the week before last. But the admins there want to move her back to her apartment on Monday. We simply cannot afford round the clock care and will likely just have to take our chances. In the meantime, my brother is trying to find an opening at a place somewhere between a nursing home and independent living.

My heart goes out to you. It was incredibly difficult dealing with my mom in her last few years not to mention financially draining. My now ex and I moved in with her because she was starting to have some difficulties in managing work and the house. Only after moving in with her did we realize that there were some more serious issues at play which my ex being an MD was able to pick out. Forgetfulness of recent events, inability to remember to pay bills, take medicine properly, overly demanding behavior, sometimes violent defensiveness were not uncommon. Sometimes I was public enemy #1 and sometimes my ex was depending on the way the wind blew. Because she had other health problems which lead to her death, she was mercifully spared what I think would have been a certain descent into Alzheimer's.
 

ofos

Vintage Cyburbian
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Saw two of our friends a couple weeks ago. Casual conversation, everything going well, blah, blah, blah. Thursday night, I come home from walking the dogs and there's a phone message. They'd been in accident. Stopped at light, rear-ended so hard that they slid out into the intersection where they got t-boned by another car on the passenger side. They had to be cut out of the car. She died, he's out of the hospital with broken ribs. Married 43 years, kids, grand-kids. Just good people. Damn, damn, damn.
 

dandy_warhol

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Saw two of our friends a couple weeks ago. Casual conversation, everything going well, blah, blah, blah. Thursday night, I come home from walking the dogs and there's a phone message. They'd been in accident. Stopped at light, rear-ended so hard that they slid out into the intersection where they got t-boned by another car on the passenger side. They had to be cut out of the car. She died, he's out of the hospital with broken ribs. Married 43 years, kids, grand-kids. Just good people. Damn, damn, damn.

sorry to hear about your friends. :-(
 

KSharpe

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As for me, I finally got diagnosed with MS. It's kind of a relief, actually. I have to get trained to give myself injections. Hurray for shooting up!
 

ofos

Vintage Cyburbian
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As for me, I finally got diagnosed with MS. It's kind of a relief, actually. I have to get trained to give myself injections. Hurray for shooting up!

Strange how the unknown but suspected can be so stressful. I've never had a problem with other people sticking needles in me but I'm not looking forward to ever having to do my own injections. I guess I don't trust myself as much as I do others. Anyway, this isn't supposed to be about me. Stay positive and keep us in the loop.
 

tsc

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As of July 21, here are some updates:


This Bear's brother's situation, with very severe dementia, is difficult to grasp. Less than 3 years ago he was a retiring teacher, a published author, physically active, loved to fish, well-known and respected in the area he lives (Painesville, OH) and in the place he taught for years (the high school in Fairport Harbor, OH).

And this Bear? Doing great. It has been two and half years since the bone marrow transplant. My weight is a bit higher than it should be, I do get tired at the end of a long work day (but I am going to be 59 soon, I get a pass ;)).....but I have encountered none of the signs that Hodgkin's Lymphoma has returned. Those signs would be excessive itching, extreme exhaustion, night sweats.
_____

Even with all these bumps in the road, this Bear's wander through the forest of life has been fun. Gotta love those fresh blue-berries! :)

Bear

Glad to hear you are doing well. My best friend, who moved about 3 hours away from was just diagnosed with non-hodgkins lymphoma... marginal cell lymphoma. To say the least...it has been a reality check. Your good news is words of encouragement!
 

cch

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Ofos, I'm so sorry about your friends. That is awful. I hope the throw the book at the person who rear-ended them.

KSharpe, sorry you have MS. I mentioned my MIL before, and how she gives herself injections, and according to her they have made a world of difference. I know it can be a relief to finally get a diagnosis, so they can finally treat it. That is how I felt when I was finally diagnosed with Lupus, after being told I was just anemic for 3 years.

An update about my mom, and the nurse who offered to donate her a kidney. They are a match! Now the nurse needs to have a physical done, to make sure she is in good enough shape for the surgery, and they are aiming to do the transplant in October.
 

kjel

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What's worse, Hodgkins or non-Hodgkins?

Non-Hodgkins is worse. Hodgkins has a very high rate of remission. My assistant manager from my restaurant days had Hodgkins and was in remission fairly quickly and stayed that way for a number of years until we parted ways.
 

kjel

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Bump

My lab work came back this morning and it was all in all pretty good. I was especially proud of my 6.2 A1C reading. For those of you not in the know, that is a 90 day reading of how well you control your blood sugar over time. A non-diabetic result is usually <6.0, a diabetic's goal is <7.0, so the doc was very pleased.
 

JNA

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Congrats kjelsadek on your A1c.
See what behaving yourself will get you. :) ;)
 

KSharpe

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Ofos, I'm so sorry about your friends. That is awful. I hope the throw the book at the person who rear-ended them.

KSharpe, sorry you have MS. I mentioned my MIL before, and how she gives herself injections, and according to her they have made a world of difference. I know it can be a relief to finally get a diagnosis, so they can finally treat it. That is how I felt when I was finally diagnosed with Lupus, after being told I was just anemic for 3 years.

An update about my mom, and the nurse who offered to donate her a kidney. They are a match! Now the nurse needs to have a physical done, to make sure she is in good enough shape for the surgery, and they are aiming to do the transplant in October.

I'm really glad to hear your mom has some hope! That must be such a relief.
You know, we both have auto immune diseases. We should compare notes sometime lol. My injections are okay, but if you screw them up, it really hurts!
 

cch

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Bad news about my mom now. Everything seemed to be on track for her to get the transplant later this month. But then they did a final blood test where they mixed my mom's blood with the nurse's blood. And some new antibodies resulted, which is bad news. So, the transplant is a no-go.

My mom was trying not to get her hopes up, and everyday she is closer to getting a kidney from an unknown donor. But we feel really bad for this nurse. Her husband died a couple of years ago, and she felt helpless as he succombed to heart disease. After thinking about it she realized that she couldn't help him, but she was in an position to help somebody who needs a kidney, so she pursued it.

Since they realized it wouldn't work out with my mom, she's been tested to see if she matches a couple other dialysis patients, and she doesn't. She is bound and determined to donate, but her family is urging her not to obsess about it, and maybe it isn't meant to be. She has trouble accepting that.
 

Bear Up North

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More Bad News

More bad news for my older brother, battling severe dementia at the young age of 64.

Because of his dementia, his wife and grandson have to help him wash in the shower. Last week they noticed that his penis was bleeding, so they rushed him to the hospital.

He was diagnosed with advanced prostate cancer.

My sister-in-law is not afraid to talk about his condition and what the most-likely treatment will be.....no treatment at all. That is where she is leaning, and I would hope that Katie would lean in that same direction if this was happening to me.

They go in this Friday for the discussions about treatment, life expectancy, then relationship to his dementia versus the advanced cancer diagnosis.

Bear
 

TOFB

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So sorry to hear that Bear. Your brother's story is a sad one to follow.

Our lead trumpet was just diagnosed with lymphoma. Not sure the degree yet.

Its everywhere :-(
 

KSharpe

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Bad news about my mom now. Everything seemed to be on track for her to get the transplant later this month. But then they did a final blood test where they mixed my mom's blood with the nurse's blood. And some new antibodies resulted, which is bad news. So, the transplant is a no-go.

My mom was trying not to get her hopes up, and everyday she is closer to getting a kidney from an unknown donor. But we feel really bad for this nurse. Her husband died a couple of years ago, and she felt helpless as he succombed to heart disease. After thinking about it she realized that she couldn't help him, but she was in an position to help somebody who needs a kidney, so she pursued it.

Since they realized it wouldn't work out with my mom, she's been tested to see if she matches a couple other dialysis patients, and she doesn't. She is bound and determined to donate, but her family is urging her not to obsess about it, and maybe it isn't meant to be. She has trouble accepting that.

More bad news for my older brother, battling severe dementia at the young age of 64.

Because of his dementia, his wife and grandson have to help him wash in the shower. Last week they noticed that his penis was bleeding, so they rushed him to the hospital.

He was diagnosed with advanced prostate cancer.

My sister-in-law is not afraid to talk about his condition and what the most-likely treatment will be.....no treatment at all. That is where she is leaning, and I would hope that Katie would lean in that same direction if this was happening to me.

They go in this Friday for the discussions about treatment, life expectancy, then relationship to his dementia versus the advanced cancer diagnosis.

Bear

I'm so sorry that both of you and your loved ones are going through such a hard time. I will send some prayers for you both.
 

Bubba

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My sister is undergoing a biopsy this morning (actually, it's probably over by now) that will probably confirm an initial diagnosis of...lymphoma. She was fairly upbeat when I talked to her last night, but my mother is hysterical. I'm just waiting for word on a firm diagnosis and treatment plan.

38 years young. Damn.
 

Bear Up North

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My sister is undergoing a biopsy this morning (actually, it's probably over by now) that will probably confirm an initial diagnosis of...lymphoma. She was fairly upbeat when I talked to her last night, but my mother is hysterical. I'm just waiting for word on a firm diagnosis and treatment plan.

38 years young. Damn.

As an 11-year survivor of Hodgkins Lymphoma, tell her that you are "web forum familiar" with a dude who has successfully fought this cancer off. Technology, in the form of radiation treatments, chemotherapy, high dose chemotherapy, and a bone marrow transplant has enabled this Bear to continue to push away the disease.

I am sending you and your sister my best wishes for success.

Bear
 
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