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Life-Threatening Illness & Reality Check

Bear Up North

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Update Tuesday, 3-8-05.....

The first batch of prescription cough med and antibiotics did not do the trick, so this Bear returned to the doctor on Monday, 3-7-05. Now I have a twice-a-day inhaler and a different antibiotic.

The doc was worried about pnemonia so he took a chest x-ray. Looked good, thank goodness.

I actually feel better today, just hours into the new meds.

Bear With Mask
 
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If you haven't done it yet, I suggest you change the bedding (or wash all of it) within 24 to 48 hours of starting to do better on the new antibiotics. It makes a difference when you have a compromised immune system.




MZ - defiantly getting well in spite of official pronouncements that "people like you don't get well". :h:
 

JNL

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I'm going for further testing on Monday to see if I have the big 'C' and what needs to be done about it. I don't much like being in limbo... waiting....

Why is it easier to mention this online than to those around me? I guess there's not much to say at this stage until I find out more.

Bear, your upbeat attitude in the face of all you have dealt with is an inspiration :)
 

Tranplanner

maudit anglais
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JNL said:
I'm going for further testing on Monday to see if I have the big 'C' and what needs to be done about it. I don't much like being in limbo... waiting....

Why is it easier to mention this online than to those around me? I guess there's not much to say at this stage until I find out more.

Bear, your upbeat attitude in the face of all you have dealt with is an inspiration :)

OMG - hope the test comes back negative for youJNL. I'm crossing my fingers for you. Take care of yourself!
 

Bear Up North

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JNL said:
I'm going for further testing on Monday to see if I have the big 'C' and what needs to be done about it. I don't much like being in limbo... waiting....

Why is it easier to mention this online than to those around me? I guess there's not much to say at this stage until I find out more.

Bear, your upbeat attitude in the face of all you have dealt with is an inspiration :)

JNL......I wish you the absolute bestest of luck. Hang in there. We all hope it is a false alarm OR everything is caught well in time.

Bear
 

Gedunker

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Bear Up North said:
JNL......I wish you the absolute bestest of luck. Hang in there. We all hope it is a false alarm OR everything is caught well in time.

Bear

Couldn't say it any better myself. :)
 

Rem

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I'll be thinking about you on Monday JNL. As others have said, I hope it is a false alarm.
 

Chet

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I haven't been here for a while cuz of possibly some same stuff. more later. actually hope not.

sory I've been awol. my best to Bear and JNL. :)
 
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I am really bad at the condolences type stuff. This is my lame attempt to lend moral support to both JNL and Chet. Excuse my lack of skills in this department.
 

The One

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Michele Zone said:
If you haven't done it yet, I suggest you change the bedding (or wash all of it) within 24 to 48 hours of starting to do better on the new antibiotics. It makes a difference when you have a compromised immune system.

MZ - defiantly getting well in spite of official pronouncements that "people like you don't get well". :h:

What? The instructions that came with my rubber sheets said nothing of maintenance or washing....... +o( :victory: 8-! ;)
 

Rem

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Chet too? I hope not. Best wishes for good news at your place too Chet.
 

Bear Up North

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Life takes some strange turns. I want to share something with Cyburbia that I have kind of held back on. But you have all been supportive and good listeners, so I will share the following.

My problem with Hodgkins still seems insignificant when compared to other people's problems. It's a pain to go through all the "stuff" but there is a decent chance of making it go into remission.

This time, "other people's problems" involve my older brother. He lives in Painesville Township, OH.....eastern suburb of Cleveland.....with his wife. He is five (5) years older than this Bear.....at sixty-one (61).

And it appears that he has Alzheimer's and it is progressing rapidly.

It started about a year ago, when he got lost a few times coming back from stores that are very close to his house. In late 2004 he was doing things like showing up eight (8) hours early at wrong people's houses for parties that didn't exist.

At a recent Christmas party he was very normal in conversations with me and my wife and my other brother......but didn't seem to know some of the other relatives.

His wife has been an inspiration of strength, having to now deal with all of the household chores herself. She is afraid to let him drive anyplace. Last week he got lost again and she had to get the police involved in finding him.

I have been having trouble with this because we have always been close and have always enjoyed each other's company. Our interests were very similar, we both love orock and roll and fishing and camping and movies and politics. And we are both EXPERTS at bad puns.....much to the chagrin of others gathered with us.

He seems way too young for this to happen to him. It is sad....and especially hard on his wife.

Thanks for letting me vent.

Bear
 

zman

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After all you have been through, this must be tough for you. Bear, keep at it and try to spend as much time as you can with your brother.
To keep the attitude and outlook you have on life after enduring (and still enduring) these things is an inspiration to myself and many others I suspect on Cyburbia.
My thoughts are with you and yours during these times and I wish you the best! :)

ZMan
 

Rem

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This is a terrible disease BUN and you are right, 61 seems very young. Alzheimers is made so difficult because on the surface it is the people around the victim, especially those close, that seem to have the greatest emotional burden. Yet the Alzheimers sufferers I have had contact with do seem to have an understanding of what is happeing to them, which of course must be frightening.

An older man in my street had the disease and his wife was constantly distressed dealing with it. I had to help her guide her husband home a couple of times when he was trying to get away from some imagined horror in the house or was feeling compelled to keep some non-existent appointment. She couldn't emotionally or physically deal with bringing him home. Also I had to make peace on her behalf with other neighbours or delivery drivers or whoever she was venting on (driving on her lawn or making too much noise were the big issues). They had been married for over 40 years so nursing him must have been a terrible for her.

I can empathise BUN but can't think of any encouraging words. I hope you are focussing on your own health though, you won't be in a position to help your brother, sister-in-law or the rest of the family if you aren't in the best shape you can be.
 

JNL

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Bear I have just finished reading a book about a woman struggling to come to terms with her mother's Alzheimers (and her relationship with her mother) and the decision to put her into a home when it got to the stage that she needed full-time residential care. Wow, I got a real insight into what a difficult disease it is... sometimes the person will seem completely normal, but other times they don't recognise those around them and may even fear them. And they can display some quite bizarre behaviour that would be funny if it wasn't sad... My thoughts are with you.

An update on my situation: had the biopsy done today, results will be back in 7-10 days. Most likely scenario is that it's an early catch and one minor operation will take care of it. Thanks so much to those who posted their kind thoughts of support :)
 

Cardinal

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I had a grandfather go through this. I know how painful it can be to watch someone you love grow to a point where they do not recognize the people closest to them. This is especially hard because it lasts so long. Physically, they may be fine while their memories slip away. The best advice I can give to you and your family is to not try to soldier the burden of care all by yourself. You all may want to keep him at home and take care of him, but I saw what it did to my grandmother. Recognize the point at which he would be better off in a treatment center, and don't think you are letting him down by putting him there. I keep hoping for some new breakthrough that can at least arrest the disease, if not prevent or cure it.
 

nuovorecord

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Chet, JNL, BUN...

It's saddening to hear about other's struggles with cancer and other life-threatening diseases and injuries. Even though I don't know any of you, I have been touched, amused, and inspired by the things you have written on Cyburbia. My thoughts are with you all as you deal with the hand life has dealt you. All I can offer you besides that is the encouragement that two of my friends have fought and won battles with cancer over the past couple of years. Medical science can do wonderful things these days. Combine that with a will to live and a group of people that care about you and support you, and you have a recipe for amazing things to happen.

Be well, LiveStrong. We're all pulling for you.
 

Bear Up North

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nuovorecord said:
It's saddening to hear about other's struggles with cancer and other life-threatening diseases and injuries. Even though I don't know any of you, I have been touched, amused, and inspired by the things you have written on Cyburbia. My thoughts are with you all as you deal with the hand life has dealt you. All I can offer you besides that is the encouragement that two of my friends have fought and won battles with cancer over the past couple of years. Medical science can do wonderful things these days. Combine that with a will to live and a group of people that care about you and support you, and you have a recipe for amazing things to happen.

Be well, LiveStrong. We're all pulling for you.

Thank you for your kind words. Appreciate it!

Slightly-off-topic: My son and his family are planning on a summertime move to the Portland area. They have friends from both NE Ohio and NW Ohio who have made the move to Portland and Eugene, in the past few years.

This Bear hasn't been to The Rose City (is it still called that?) since the Bicentennial Year, 1976, as part of a three-week cross-country trip in a VW camper. :-c

Bear
 

nuovorecord

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Bear Up North said:
Thank you for your kind words. Appreciate it!

Slightly-off-topic: My son and his family are planning on a summertime move to the Portland area. They have friends from both NE Ohio and NW Ohio who have made the move to Portland and Eugene, in the past few years.

This Bear hasn't been to The Rose City (is it still called that?) since the Bicentennial Year, 1976, as part of a three-week cross-country trip in a VW camper. :-c

Bear

(ot)Yep, it's still and forever will be the Rose City. Despite my Tom McCall contrarian tagline, that's great that your son is moving here. I'm sure they will love it!(ot)
 

Bear Up North

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Looks like this Bear will be returning to the doctor on Monday, 3-21-05. I have a swollen ankle. Obviously there is a problem with my body retaining water or a possible cancer or treatment related issue.

I did some web searching last night and there are a couple of possibilities. The excessive chemo can cause this problem. A general lack of activity can cause this problem. (Hey, lay off....I'm working on this. :-{ ;-) :-D )

The swelling was worse Friday and has since gone down. It will still have to be checked. Nothing to mess with when your body has been "messed with" like mine has.

Bear Singing I Don't Need No Doctor
 

Bear Up North

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Now This Is Swell

Oh swell! My left ankle is still swelled. The right ankle is slightly swelled. I saw the doctor today. Here's the deal.....

He gave me a script for pills that will get the fluids out of me. But, he's worried that the excessive chemotherapy might have caused some heart damage. Tomorrow morning (Wednesday) I go in for a mugga-scan, to check my ticker.

I had this scan back in December, before the bone marrow transplant. This latest look-see will give the docs two (2) scans to do some comparing. Hopefully, this is just a minor setback on the long road to recovery.

I was hoping to return to the office on Monday (next week). That may get delayed.

Bear With The Wrong Parts Of His Body Swelling Up
 
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Nah, it is a "phase of the moon" thing: my feet/ankles are swollen from walking all over San Francisco this past weekend. :-D


Good luck with the pics of the ole ticker. :)



MZ, too young for this sh*t but had such problems since birthing a 9 1/2 pounder when I was 24. :-c
 

Bear Up North

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Just read some sad news in the obits column. A friend that I played basketball with for a number of years passed away, "unexpectedly", on Friday. He had been diagnosed with testicular cancer back in the mid 1980's and he had some surgery to remove a testicle. I had not seen him in quite a few years so I'm not sure how his health had been of late.

He was fifty-five (55),

You just never know when your number comes up. Sad.

Bear
 

Bear Up North

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You nice folks are probably getting a bit tired of my updates, but (quite frankly) I feel better when I get this stuff off my chest.

Not so good news follows.

Last night I had a moderate incident of night sweats. Night sweats are an indicator of Hodgkins. The past few nights I had a couple other incidents, much less noticeable, but still noticeable.

My own preliminary diagnosis is that the bone marrow transplant did not work. This is just a prelim but it is scaring me....and really freaking out Katie.

Last Friday I went to my oncology doctor and we discussed how well I responded to the high dose chemo and the transplant. He said, "You are doing very well. No reason to see you anymore, unless you show signs that the cancer is back."

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.................

So, it will again be appointment time at the University of Michigan Cancer Center. They will do a battery of tests and possibly another bone marrow biopsy. Those hurt. I'm a wimp. :-c

This is frustrating. I have been fighting this stoopid "c" since January, 2003. I wanna be normal.

(Face the facts, Mr. Bear....you'll never be "normal"......)

Bear
 

Richmond Jake

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Bear Up North said:
.....Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr................
Bear
No, just forget it. I coming north this summer and showing you a thing or two about west coast b-ball. Remenber John Wooden? Well, I sorta do, but he wouldn't even look at this short white kid from ....No Cal.
 

Bear Up North

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RichmondJake said:
No, just forget it. I coming north this summer and showing you a thing or two about west coast b-ball. Remenber John Wooden? Well, I sorta do, but he wouldn't even look at this short white kid from ....No Cal.

You , my man, are providing a great motivator for me to get healthy and do it now! You're history. Heh heh heh......

Bear
 

Richmond Jake

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Bear Up North said:
You , my man, are providing a great motivator for me to get healthy and do it now! You're history. Heh heh heh......

Bear
What ever I can do, 'cause I'm coming up there and kicking your butt. History, my a$$... You're talking about a west coast kid here....can I make it more clear?
 

Queen B

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Bear I am with you on those night sweats! Are your hormones out of whack like mine??? ;-) ;-)
The Dr. told me a year and a half ago that I needed to come off my hormone replacement because my mother had breast cancer. I can certainly tell you that I haven't been the same since. His best recommendation was to do without them as long as I could stand the hot flashes before I took one. I can almost make it three weeks. Sure has messed with my emotional stability. Not able to handle the crap life dishes out as well as I used to. Boy that makes me mad.

The thing that people don't talk about with the hot flashes, generallly there is a bone chilling cold that hits right before. It is a cold you just can't get warm, teeth rattling at times and about the time you think you can't stand it any more, the blast furnace hits.
 
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Bear Up North said:
Last night I had a moderate incident of night sweats. Night sweats are an indicator of Hodgkins. The past few nights I had a couple other incidents, much less noticeable, but still noticeable.

My own preliminary diagnosis is that the bone marrow transplant did not work. This is just a prelim but it is scaring me....and really freaking out Katie.
Bear, my sister and I have talked about this: night sweats can also be due to the body trying to sweat out all the chemo drugs. She and I both went through something like that: her after chemo for cancer and me when I was getting off so many drugs that had been prescribed for my respiratory problems. I recommend warm salt water baths to help your body rid itself of the lingering chemicals. That helped me.

Yes, check it out to be sure. But I wouldn't fret too much yet. It takes a long time for the body to get back to some semblance of normal after so much medical assault. And my money is on you to whoop up on RJ. ;-)
 

JNA

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I got a form letter from CVS/pharmacy stating that one of the drugs (Avandamet)
I take for managing my diabetes stating that:

"Due to manufacturing issues, distribution...has been currently disrupted...
we do not have a date as to when this product will be available again.
...GlaxoSmithKline (manufacturer) is working with the FDA to resolve the manufacturing issues as quickly as possible."


Well of course I will contact my
"physician (to) determine the best therapy options..." before my current supply runs out.

At the bottom of the letter was this -
"This mailing is provided with finacial support from GlaxoSmithKline
No information about you has been provided to GlaxoSmithKline
"
 

Bear Up North

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For those who are interested, here's an update:

Only had the one major (1) incident of night sweats. Nothing in the last couple of weeks. That's good news.

Still very tired all of the time. (Not tired enuf to stop hitting the keys to Cyburbialand, though.....)

Still get out of breath really quickly.

Doctors appointments at University of Michigan Cancer Center will be sometimes in May, 2005. Not sure what those tests will be.

As indicated in another thread (....."will that idiot ever stop making threads?".....) I have returned to work, in a about-six-hours-a-day mode. Trying not to let the whims of the workplace drive my mental being.

Off To Another Dimension Bear
 
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I am glad to hear you are doing so well -- having returned to work early and so forth. :)

My health has also improved dramatically in recent weeks. Woo-hoo. :)
 

Bear Up North

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100 Days Since Bone Marrow Transplant!!!

Just returned from an all-day visit to the University of Michigan Cancer Center. It was the scheduled 100-days after transplant visit. It went somewhat OK.

Both doctors who talked with me were very suprised that I went back to work as soon as I did. They said that in most cases, patients begin to return to part-time work AFTER the 100-day mark. I returned at about the 75-day mark.

Some concern because the swelling in my feet and ankles hasn't gone away. It has been four (4) weeks now. They are thinking that there might be a problem with the thyroid, because those particular numbers in my lab results were indicating a possible problem. More testing.....naturally.

I also have a slightly-elevated glucose reading. My younger brother has mild diabetes so there is a family history link. Steroids given during the transplant could also have caused the elevated glucose reading. Will be doing some testing (and possible mild medicating) with the local family doctor.

All the other numbers were very good. Doctors said I looked, "Better than the average bear". Of course, it was in their best Yogi Bear voice.

Bear
 

Gedunker

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All in all, good news, Bear!Just remember to take it easy and listen to Katie -- she knows what's best. ;)

My FIL had laproscopic surgery Monday for a cancer in his kidney. Post-op has been a little rough, but the major indicators are all good. He'll start radiation treatments soon. Keeping our fingers crossed.
 

urbanchik

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I am deeply touched by your ability to think of others during this extremely difficult time. My 7-year old nephew Jonathan is going through a similar ordeal as you. Last August he was diagnosed with leukemia. After three months of chemo and then an intense week of chemo and radiation, he had a bone marrow transplant on December 17th. The docs said that he was "as healthy as anyone could possibly be" going into the transplant. The whole family (all 25 of us) drove to Gainesville, FL to spend xmas with him (we had to take turns visiting becuase only 3 people could be in a room with him at a time). After we left, he seemed to be doing fine, but then got seven infections and he was fighting for his life. He pulled through, temporarily losing his eyesight in the process, but the infections killed the new bone marrow (it was marrow from a newborn's umbilical cord). By late February, we learned that the transplant had failed. So in March the docs put his old bone marrow back in. Now he is in remission, but most likely his bone marrow will start producing cancer cells again. He is lucky to had been matched with two donors, so he will have another shot at beating leukemia. But I would give anything to switch places with him, because to think of a little kid going through this, TWICE, fighting for his life, just breaks my heart. Even though he is getting better now, he isnt the same. His childhood is gone and he just doesnt relate to kids anymore. Mainly because he has been away for so long, but also with a bald head and scars from infections, kids (even his own cousins) treat him differently.

Regarding your last update, I can tell you that the docs werent helpful in explaining to us how Jonathan was doing and why every day was so differnt. By chance, I happended to meet a doctor at a party on New Year's Eve and we spend the first hour of 2005 talking about leukemia and transplants! He told me that recovery from a BMT is like a rollercoaster ride, one day you feel okay, the next you feel like you are barely staying alive. It is unfortunately part of the transplant and recovery. Your body is trying to adjust, but it also has to fight infections and do its job. We were freaking out too every day. Jonathan had everything happen to him: infections, blindness, and some other unpleasantries I wont mention here. Through all of it, though, he is so strong and rarely feels sorry for himself. It is funny to hear a kid discuss medical terms and blood counts to a doctor (and I am thinking - dudes, speak english!).

Hang in there and keep up the fight. Try not to let the bad days get you down.I know, easier said than done. We worried too.
 

Bear Up North

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Smile A Little Smile For Me

A sincere "thank you" to those who have recently posted on this thread and wished me luck and that sort of thing. I am sometimes slow in responding. Thanx!
_____

My smile is going to be changing. The extensive radiation that I had in 1996, the chemotherapy in 2003, the chemotherapy in 2004, and the bone marrow stem cell transplant in 2005 have.....for all practical purposes.....destroyed a bunch of my teeth.

Gone will be my unique gap, next to the front tooth I chipped while "Indian wrestling" on a school nus in my grade school years. Gone will be the spacing of some of those upper teeth.

Gone will be a bunch of teeth. :( :-c

They cannot save them. I have an infection behind them. I am currently on anti-biotics. In a few works extensive orange barrel cone work will mark the work zone known as "Bear's Former Teeth".

Gotta look on the bright side: I will have a better and brighter smile. Alas, it, like my pencil city, will be fake. :-c

I will probably need extensive medication in the form of tall cold bottles of Rolling Rock. Life IS good.

Bear & His Smile :)
 
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Bear Up North said:
Bear & His Smile :)
I had 5 molars removed in my early thirties. My smile is still mostly intact but getting more lopsided with every passing year, thanks to the tooth imbalance (I have no molars on the left side of my mouth). I counted myself lucky to lose them so young: An uncle died within a few months of having some teeth pulled when he was around 70 or so. They say the poisons released into his system by removing the teeth went to his heart and killed him. My dad is 80 and can't get his smile repaired. He lost a front bridge, he takes heart medication and he would have to go off of it for a week to have dental work. He would need general anesthesia and heart specialist standing by. It would cost thou$and$ and put his life at risk. He just doesn't feel it's worth it.

MZ, counting what few teeth I have left and my blessings. :-D
 

JNA

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Having undergone massive/continual dental work myself I feel your pain.
And besides w/ my chronic disease, I am always at risk.
 

Chet

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But Bear..... Why were you "Indian wrestling" the school nun in the first place?
:-c
 

Bear Up North

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Chet said:
But Bear..... Why were you "Indian wrestling" the school nun in the first place?
:-c

See that bridge? I built that bridge. Do they call me a "great bridge builder"? No.

See that tall building? I built that tall building. Do they call me a "great tall building builder"? No.

But you make one (1) lousy typo......... ;-)
_____

I am sure you figured out it was "bus". Not an abbreviated and funky-sounding "nurse". Not a "nun". (That's a habit I don't want to get in to. :-D )

Bear
 

Bear Up North

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Live For Today

Today I attended an annual event called "Safety & Health Day In Toledo". This event, which I have attended about nine (9) years in a row, is sponsored by some local companies and organizations. It includes a keynote speaker followed by a slew of break-out sessions on different safety and health topics.

The keynote speaker was good. His background included stints with groups that dealt with the effects of cancer on the surviving families and he spent some years with drug rehab centers.

His message was that we really do need to "live for today". One (1) of his comments was something along these lines: "Live for today because you are going to be dead for a long time."

He told some nice stories about people who were dying but still had the fire in their eyes, the excitement about life in their souls. He matched that against people we meet and work with everyday.....those negative people who are physically very healthy but "....they have been dead for a long time."

It was a nice keynote speech.

Bear
 

Bear Up North

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Swanton, OH, is having their annual "Relay For Life" event, coming up in late June. Since this Bear is a cancer survivor I will walk the first lap at the event (with other survivors) holding balloons. We will all release them at the same time at the end of that lap. Photo op stuff, ya know.

Katie has been collecting money $ for the event and she laughed when she hit me up for some mula. She said, "This is funny. I'm collecting in your honor, from you."

I laughed and she finished with, "I'm not kidding. Pay up, big boy."

:-c :)

Bear
 

Bear Up North

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Update

My back hurts today. Probably from the yard work that I was doing yesterday. This yard work involved my hands, my back, a shovel, a hoe, and some dirt. Because I have been slowly getting back to normal my bod is not very used to intense physical labor.

I have been back to work since early April. I now get in about a forty (40) hour week......usually consisting of a couple longer days and three (3) shorter days. My work days usually include considerable time "on the plant floor", so that activity is giving me "walking" time. Usually by Friday each week I am moving a bit slower, so I tend to make Friday a stay-a-lot-in-the-office day.

If you cruise internet cancer sites, or talk to cancer and bone marrow stem-cell transplant specialists, or converse with BMSCT survivors the message you get is that the length of your recovery period varies. Some folks go through it and are still not back at work or active up to two (2) years after the transplant. Others are getting back to normal after a couple hundred days.

This Bear is close to normal, after five (5) months. Still getting winded pretty easy (so whipping RJ on the basketball court is still a ways away). The last time I had night sweats was somewhere about the 100-days-after-transplant mark. As MZ alluded to at that time, the intense chemotherapy drugs still in me at that time may have contributed to the night sweats. FYI.....night sweats are an indicator of Hodgkin's Lymphoma, especially if you are an older male who has already gone through menopause :-c ;-) :-$ :-D .

Still have an infection behind my teeth. A bunch of teeth are scheduled to go bye-bye, later this month. Radiation and chemo tend to be tough on teeth.....they erase the mouth's ability to fight off decay.

Other folks who have Hodgkin's Lymphoma (formerly called Hodgkin's Disease) who are in the news.....

Pennsylvania Republican Senator Arlen Specter.....the little girl in the news last week, with the parents who were initially refusing to allow her to have treatment.....the owner of the Pittsburgh Penguins and one (1) of the greatest hockey players of all time, Mario Lemieux.....and if I remember correctly, a guitarist from the group Garbage died a few years ago from Hodkgins.

There is also a another cancer called Non-Hodgkins. If you get N-H, you might as well start getting your papers in order. Much higher death rate with N-H when measured against Hodgkin's. If I have to let one (1) of those puppies live in my nodes, glad it's "regular unleaded".;-)

My back hurts. This post is over. You have the update. Today there will be no outside yard work. Taking it easy. Thanx for putting up with me.

Bear
 
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