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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Sun Jan 30, 2011, 06:11 PM
cheri cheri is offline
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The NEED for Laughter

I recently read a post by Ryan Jay (AA forum) with the title
"We all scream when we eat ice cream"........( or close to it) and it made me laugh out loud. Then I posted a wisecrack reply and someone pm'd me that they thought it was funny. Humor is a HUGE part of my "real" life.

It then occured to me that I never laugh when I'm on this site. I feel educated, supported, hopeful, empowered, and inspired...I also feel ignorant, confused, defeated and overwhelmed and just plain sad. Sometimes I just want to feel a little bit "lighter"( in more ways than one...) I check this site daily and some days would like a little emotional lift...or provide some positive reinforcement as a way of giving back to those who have taken the time to help or bolster me....

I think there are a bunch of smart, amazing people on here who are all going thru the worst time in their life, myself included. Who see the irony in what has happened to us, and some of the random, funny experiences along the way...like how I went to a Leukemia fundraiser for someone else and was really excited about a nite out, dressed up...first one in a LONG time. As it turned out, could have bled to death because my platelets were ultra low and some drunk bimbo fell backward in her huge teak barstool and landed on my shin & ankle, that swelled and turned purple immediately....what are the odds? Why couldn't have I just won the 50-50?
Funny in an ironic sort of way... See, it's not all bad! lol....

Wonder how, in a tasteful way, we could incorporate a little levity? Not in a joke telling way, but some of the little things that make us chuckle or smile during this crazy experience. Laughter and inspiration. I have some other anecdotes that have happened as well....I think there are miracles all around us and I have experienced a few, through amazing coincidences. And some "angels" I have met too...I would like to hear those stories from others as well.

Perhaps we could lighten our day, either by establishing a new forum, or whatever....maybe no one else agrees, but if you do, please let me know! If not, I just wasted 5 minutes of your time...my apoligies....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #2  
Old Sun Jan 30, 2011, 08:35 PM
Neil Cuadra Neil Cuadra is offline
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Cheri,

You are absolutely right. I can appreciate your sad-funny story about the fundraiser and I invite you to tell us others.

My wife and I have always relied heavily on a sense of humor to get us through difficult times (and to enjoy good times that much more). Sometimes it's hard to avoid making a wisecrack when it comes to mind despite the risk that someone else will think we're making light of a serious situation. But, at least for us, humor is one of the best coping tools.

For some reason we still laugh when we think back on some of the mini-disasters during my wife's treatment. I guess they're some of the most memorable events.

One was when we were staying in a little residence unit on the hospital campus during my wife's pre-transplant radiation treatments:
The radiation left her nauseous and she'd get sick to her stomach at the slightest smell of food. It got so that just talking about food made her feel icky. The trouble was that we'd brought food supplies so that I could feed myself while taking care of her that first week.

The unit was like a tiny one-bedroom apartment, with a kitchenette area near the door. I'd stay in the kitchenette area and try to prepare myself food without letting any smells get over to the other side of the room. I made it a habit to go outside to eat my meals on a patio. Even though she had no appetite herself she wanted to know that I wasn't starving, but without discussing food. She solved the problem by saying "Tell me IF you ate, not WHAT you ate." I'd say yes.

One evening I microwaved myself a frozen dinner. While it was cooking I opened the patio door and put my tableware out there. Then, when the microwave beeped, I grabbed potholders, opened the microwave door, and as quickly as I could whisked the cooked dinner out of the room to the patio so I could eat it out of "nose range." But in the less than 2 seconds it was in the room, she got sick again. It was comically awful for her.
Now we laugh that she could be so sensitive that 2 seconds was too long to be in the room with food, and we still say "Tell me IF you ate, not WHAT you ate" to each other as a joke.
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  #3  
Old Sun Jan 30, 2011, 09:01 PM
cheri cheri is offline
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Thumbs up Wahoo!

See, I knew it! So good to hear from someone, especially you Neil! I was hoping for your approval, without putting you on the spot! Where should we put our humorous stories/inspirational messages?

Ah, there is good stuff in them there hills..........

I was given 3 months to live, in Oct 2009....been thru near death and back...
and believe me, I say ...HA HA! I'm still here!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #4  
Old Sun Jan 30, 2011, 09:28 PM
Paula W. Paula W. is offline
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Cheri & Neil,

I loved your stories! Yes I believe that laughter is a great way to heal. Even if it just takes your mind off your illness for a couple of minutes, we all need to laugh.

Tonight my parents were over for dinner, I asked my mom if she would like a glass of wine or something, she asked if I had any blood in the fridge. She caught me so off guard, we laughed so hard. It's great when you can make light of a serious situation. Laughter will never hurt you!

God Bless,

Paula
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  #5  
Old Sun Jan 30, 2011, 09:30 PM
cheri cheri is offline
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LOL!
Could you spare a glass of Pinot Platelets?
Ahhhh...
This is good!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #6  
Old Sun Jan 30, 2011, 10:58 PM
Chirley Chirley is offline
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What about the time the cancer centre nurse told me I had a lovely wig. I've never lost my hair, it's all my own. She was embarrassed but I thought it was very funny.
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  #7  
Old Sun Jan 30, 2011, 11:00 PM
Ryan Jay Ryan Jay is offline
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Good times with my hemo!

My hematologist and I are both total wise asses! Sometimes, when it's quiet in the infusion room and we have just the regulars being treated, we'll play little pranks on the nurses.

She knows the kind of irreverent humor that wins me over.

I'll never forget the time that my counts started to rebound and I asked her if I had any restrictions on coffee or alcohol.

Her reply:

"Do you want to get drunk? Yes Ryan, let me call the pharmacist and see if we can get you drunk! If I had aplastic anemia, I would want to get drunk too. Do you want to do drugs as well?"

You have to imagine it in the voice of a 50-year-old woman with an Indian accent, and then it's WAY funnier.

This is a woman who had identified my symptoms and made the diagnosis almost on the spot, when other doctors were still floundering around guessing. I knew she was a keeper!!

*Haystack Calhoun was a rather large hairy old-school wrestler who wore overalls.
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  #8  
Old Mon Jan 31, 2011, 12:32 AM
ifoundjimmyhoffa ifoundjimmyhoffa is offline
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If any one ever watched Boy Meets World..

My little brother has always been a comedian - he was joking around in the ER the day before I was diagnosed to lighten the mood. He started saying "Paging doctor pudding....doctor chocolate pudding!" over and over again....until a short, indian man came in and introduced himself as my hematologist. To which my brother responded..."Paging doctor pudding..doctor chocolate pudding!"

Luckily, the doc wasn't offended. After he laughed, we all joined in too.

I have a few great stories from the last week of my hospitalization for transplant. (Shenanigans with night nurses when I was allowed into the hallways while the other kids were sleeping..we'll just say window chalk became a very popular thing on the hem/onc floor while I was there!)
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  #9  
Old Mon Jan 31, 2011, 08:10 AM
Paula W. Paula W. is offline
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Cheri,

Look what you started!!!!! AWESOME!!!!

Paula
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  #10  
Old Mon Jan 31, 2011, 09:53 AM
Marlene Marlene is offline
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We used to joke that Johh's Transylvania lineage was in some way connected to his SAA. He was always a night person and prefers shade to sun.

Even at his worst times, he kept his sense of humor and would joke around with the nurses to help lighten the intensity of the day. We also got some good laughs, I guess at his expense in way, when they gave him the pre-meds for the cytoxan. He was so loopy and we were not used to seeing him that way...he was pretty funny.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #11  
Old Mon Jan 31, 2011, 11:31 AM
cheri cheri is offline
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Talking What a great way to start the morning!

Laughing! (I need to wait 1/2 hour between meds and breakfast, so I often come on line) I was thrilled to see more posts!

The wig story cracked me up, and I'm imagining all sorts of funny things with sidewalk chalk on a hospital corridor floor....wish I had thought of that!
The others were great as well and I am so happy that others are willing to share their lighter moments!
Keep 'em coming!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #12  
Old Mon Jan 31, 2011, 01:16 PM
Robi1Knobi Robi1Knobi is offline
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Vampire

My friends all accused me of being a vampire, that was the real reason I needed blood! I was working nights, sleeping all day, pale as a ghost, you get the picture!
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  #13  
Old Mon Jan 31, 2011, 02:04 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by cheri View Post
Where should we put our humorous stories/inspirational messages?
Right in this thread!

We put it in the "Living with Illness" forum. A good sense of humor is a key to living well, keeping the right perspective, and fostering optimism. And you don't even have to go the pharmacy to get it!
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  #14  
Old Mon Jan 31, 2011, 02:08 PM
kellym kellym is offline
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I couldn't agree more, laughter gets my daughter through in hospital and takes her mind of things, even more so when it's me being silly and she and the nurses can have a good laugh at me, i try to keep her happy and laughing as much as I can it really helps her.
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  #15  
Old Mon Jan 31, 2011, 02:17 PM
Lisa V Lisa V is offline
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Back when Ken was getting ATG and being transfused, I became very familiar with those hang bags of saline solution. Around that time I went into a Sears store and just about lost it when I saw the cashier's name tag: "Saline". I'm sure she pronounced it "Celine", and probably wouldn't have got why I was cracking up, but every AAer I told that to thought it was funny.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #16  
Old Wed Feb 2, 2011, 01:09 AM
Jen B Jen B is offline
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Thanks for the laugh everyone.

I was videotaping my son getting his head shaved at the hospital, as hair on his pillow falling out from chemo/radiation was bugging him.

I just recently was looking back at pictures/videos - you see my cutie son with his grump on, but his emotion is eclipsed by the fact that the woman cutting his hair is wearing a low cut shirt. When she bends over to shave him in the 10 minutes of video - well, it should be rated X I guess...

My husband thinks it is the funniest thing!
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  #17  
Old Wed Feb 2, 2011, 11:58 AM
Snuuze Snuuze is offline
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The Need for Laughter

Great idea. All the ups and downs have opportunities to laugh somewhere if we look for them. Yesterday was my birthday and my daughter asked what I wanted. My reply: blood. I was scheduled for a transfusion. That won't really get your funny bones jiggling, but it's just part of how I look at this whole thing.
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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  #18  
Old Wed Feb 2, 2011, 10:28 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Snuuze View Post
Yesterday was my birthday and my daughter asked what I wanted. My reply: blood. I was scheduled for a transfusion. That won't really get your funny bones jiggling, but it's just part of how I look at this whole thing.
I have a T-shirt that says "Got Blood?" as a spoof of the "Got Milk?" commercial slogan. I think they sell it for Halloween but I wear it anytime.

When I wore this shirt to one of our appointments at the hospital, not a single person commented or laughed. Maybe everyone is too respectful of privacy to say anything. In any case, WE think it's funny.
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Old Thu Feb 3, 2011, 08:42 AM
Marlene Marlene is offline
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How to clear an elevator...

Wearing the mask got us interesting responses from strangers. We found that everyone moved away from us, especially in an elevator. I guess they thought John had something really bad they didn't want to catch.

The funniest was when we were walking behind a mother with her two children. Her son must have been about 3 yrs old and he saw John with his mask on. Must have been pretty scary for him because he started to push his mom and yell hurry up! hurry up! to get away from us. When the mom saw what was causing his distress, she smiled and shook her head and we all laughed.

But the sweetest response was when we walking around the Inner Harbor in Baltimore and a women came up to ask why John wore the mask and ask if we wouldn't mind if she put him on her prayer list.

To this day, the kindness from people we don't even know, is still emotionally overwhelming.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #20  
Old Thu Feb 3, 2011, 11:41 AM
cheri cheri is offline
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Strangers who pray for us

That story reminded me of how I went into a health food store, and I randomly started speaking about tea to a very religious woman, who said that she missed her flight, and believed that she was meant to encounter someone special that day.
After telling her my story, she grabbed both of my hands and on the spot, prayed for my recovery and said that I was the reason and the person! VERY powerful stuff!
I also went to a lawyer I had never met, to draw up my will and get my affairs in order...he HUGGED me on the way out and said he would pray for me....
Then there was the girl selling cosmetic products....and the lady at the jewelry party, and......
Needless to say, I am humbled and so appreciative... What a comforting, generous thing to say "I'll pray for you"
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #21  
Old Thu Feb 3, 2011, 02:24 PM
Lisa V Lisa V is offline
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Has anyone tried drawing features on one of those masks? Seems like it might help break the ice and make people more comfortable if there was a big goofy grin on the front (no toxic markers, of course). Just a thought.

It's hard to gauge humor though, or to know what is appropriate unless you know the person or they give you a clue. I'm surprised Neil's "Got Blood?" T-shirt didn't at least get a chuckle from the nurses, although I wouldn't have expected other patients to say anything.

It's the same with shows of concern, particularly where religion is involved. Although we are not religious people, I have always been deeply appreciative if someone offers to include Ken in their prayers, because it means they care. On the other hand, I get very angry if someone tries to tell us everything will be okay if we just have faith. To the person saying it, those may seem like similar sentiments, but the intention behind them feels very different to me.

I was particularly moved when Ken's brother started going to a "remote healing" practitioner. Every week he'll call and find out what's going on and what areas are the most problematic, and then he goes to someone who uses him as a proxy to send healing vibrations across the ocean to Ken. Now, I don't for a minute believe this has any medical efficacy whatsoever, but it has turned what was formerly a distant relationship into a close one, and that's all that matters.
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  #22  
Old Thu Feb 3, 2011, 05:59 PM
cheri cheri is offline
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Therein lies the "good medicine"....not all healing comes from a prescription!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #23  
Old Mon Jun 6, 2011, 10:08 AM
cheri cheri is offline
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Talking A little something "light" to begin the week!

These never fail to crack me up...........

The Evolution of Dance, parts 1 & 2
http://www.youtube.com/watch?v=dMH0bHeiRNg
http://www.youtube.com/watch?v=inLBPVG8oEU&NR=1
Enjoy!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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Old Tue Jun 7, 2011, 07:39 AM
BerryP BerryP is offline
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Quote:
Originally Posted by cheri View Post
I recently read a post by Ryan Jay (AA forum) with the title
"We all scream when we eat ice cream"........( or close to it) and it made me laugh out loud. Then I posted a wisecrack reply and someone pm'd me that they thought it was funny. Humor is a HUGE part of my "real" life.

It then occured to me that I never laugh when I'm on this site. I feel educated, supported, hopeful, empowered, and inspired...I also feel ignorant, confused, defeated and overwhelmed and just plain sad. Sometimes I just want to feel a little bit "lighter"( in more ways than one...) I check this site daily and some days would like a little emotional lift...or provide some positive reinforcement as a way of giving back to those who have taken the time to help or bolster me....

I think there are a bunch of smart, amazing people on here who are all going thru the worst time in their life, myself included. Who see the irony in what has happened to us, and some of the random, funny experiences along the way...like how I went to a Leukemia fundraiser for someone else and was really excited about a nite out, dressed up...first one in a LONG time. As it turned out, could have bled to death because my platelets were ultra low and some drunk bimbo fell backward in her huge teak barstool and landed on my shin & ankle, that swelled and turned purple immediately....what are the odds? Why couldn't have I just won the 50-50?
Funny in an ironic sort of way... See, it's not all bad! lol....

Wonder how, in a tasteful way, we could incorporate a little levity? Not in a joke telling way, but some of the little things that make us chuckle or smile during this crazy experience. Laughter and inspiration. I have some other anecdotes that have happened as well....I think there are miracles all around us and I have experienced a few, through amazing coincidences. And some "angels" I have met too...I would like to hear those stories from others as well.

Perhaps we could lighten our day, either by establishing a new forum, or whatever....maybe no one else agrees, but if you do, please let me know! If not, I just wasted 5 minutes of your time...my apoligies....
I have AA and when I was first diagnosed we did not have a prognosis so it has become a standing joke with us that my husband will find a thai bride. It has become shorthand for when stuff gets grim to call it thai bride time. It is so much easier to wisecrack through this than to sit and be sad. I got some blood the other day which made me feel drunk and my sister in law commented well so what beggars can't be choosers! Someone the other day wanted some support and I said, i'm in your corner, I may be slumped in your corner, but i'm in your corner. I am nicknamed Huff Puff. I'll support a laughter forum.
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  #25  
Old Tue Jun 7, 2011, 10:17 AM
cheri cheri is offline
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Thumbs up Now that's what I'm talkin' about!

Berry P
LOL! "Beggars can't be choosers"....great way to start my day...thanks!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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