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- This topic has 32 replies, 6 voices, and was last updated 13 years, 4 months ago by Bonnie Lea.
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- April 27, 2011 at 3:25 pm
well well well. (said the three holes in the ground) I am announcing most publically about me and my machine. I have found several of my aquaintances have this problem, or know of a dear one in the same sinking boat.
well well well. (said the three holes in the ground) I am announcing most publically about me and my machine. I have found several of my aquaintances have this problem, or know of a dear one in the same sinking boat.
I decided that along with telling everyone everywhere (even to arguing about it on those 'reader comments' on yahoo canada, about melanoma, I also do about life without boobs. Cancer, Breast Cancer, eyelids, and now Severe sleep apnea. I talked about my shunt, but almost no one understood about it, all thought I was born a hydrocephalac (nope) it was Normal Pressure Hydrocephalus which often goes undiagnosed in our elderly (I am not elderly) and they call it dementia behaviour, or early perhaps alzheimers. But prob was most of the group I joined are in their 80's and or are the caregivers of said patients. I was 57.
So now after getting this dx about sleep issues, I began to research and find out loads and loads of things that I always have put to my brain stuff. and to the growing weight gain, and boy what an eye opener.
My husband talks over our 'nana monitor' with voices like Hello….this is Darth Vader checking in with Princess Leia….I have my son saying now finally I am his favourite (loved DV when he was littleer) my dotter calls me snuffleupagus, and I call me dorky. My chiropractor on FB thought perhaps I was one of the characters from the bar scene during Star Wars. hahah
I am out of the closet. hahah I made a story of one of the chest bands that they place on the top of ones 'ahem boobs" kept slipping until the tech fashioned a bra strap affair. I had friends write saying how scared they are of a biopsy report. but now they can always try to find humour. The NPH stuff, well, the dears are rather old, but I kept the caregivers amused. But get this
I got into arguments on Yahoo Canada when someone said those stupid things, about sun screen, and sun and supposdely you can get some sort of skin cancer. Well first time I did this chiming in stated "Obv you do not have melanoma" went on about toomany people die from it, and more research is needed, for a CURE…step one, being smart about the sun….cover up, peak hours, and or sun screen. But no one cares about that do they. But I am mad now. I am a walking disaster if I let it be so…I choose not to be that way. Worries now are around my liver, and some leisons spots, what ever was found on CT scan, which were not there last CT scan in 2008. So still waiting for MRI. Maybe I(hope) it is just my champagne, or last christmas pudding.
But we all should keep on fighting this fight. May is MELANOMA month. I told these dorks on the yahoo news comment site. got many thumbs down, one person said why give thumbs down, she has a really good argument and we should all listen.
my speech is ended.
Signed Snuffy (aka Bonnie Lea) baby packaderm in the making.
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- April 27, 2011 at 9:31 pm
Bonnie you just keep rolling along because you are awesome!
I don't have as much energy to argue about stuff I don't agree with these days. Smokers smoke. Tanners tan. My soapbox is still high enough to climb up on though.
I am always sending good thought right at you and sure hope the good results from your scan come quickly.
Love you!
k.
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- April 28, 2011 at 3:21 pm
Ya Kim I am a ex smoker…. smoked for 25 years and quit cold turkey in 1989 never looked back, but I vowed I would not turn into 'one of those ex smokers' But with tanning, It hurts my stomach when I see people I know, who know me (like neighbours) and they are BLONDE and of GERMAN descent and much more prone than I was. Dark hair, and brown eyes, and never sun bathed.
You need to focus on Beaglez and their rights, of leash-walking with out being pounced on by leashless doggies who's owners should be strung up.
When do you guys move? do tell who knows one day I may just get me a passport I have been to Florida once, in 1983 visited my dad who lived in Lakeland. (died in 1989) it was Christmas and bloody cold. but for us who left a 100 feet of snow, we waltzed around WIN DIX in shorts, like proper Canadians. hahah
Love you back
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- April 28, 2011 at 3:21 pm
Ya Kim I am a ex smoker…. smoked for 25 years and quit cold turkey in 1989 never looked back, but I vowed I would not turn into 'one of those ex smokers' But with tanning, It hurts my stomach when I see people I know, who know me (like neighbours) and they are BLONDE and of GERMAN descent and much more prone than I was. Dark hair, and brown eyes, and never sun bathed.
You need to focus on Beaglez and their rights, of leash-walking with out being pounced on by leashless doggies who's owners should be strung up.
When do you guys move? do tell who knows one day I may just get me a passport I have been to Florida once, in 1983 visited my dad who lived in Lakeland. (died in 1989) it was Christmas and bloody cold. but for us who left a 100 feet of snow, we waltzed around WIN DIX in shorts, like proper Canadians. hahah
Love you back
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- April 27, 2011 at 9:31 pm
Bonnie you just keep rolling along because you are awesome!
I don't have as much energy to argue about stuff I don't agree with these days. Smokers smoke. Tanners tan. My soapbox is still high enough to climb up on though.
I am always sending good thought right at you and sure hope the good results from your scan come quickly.
Love you!
k.
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- April 27, 2011 at 11:50 pm
That's so funny (your desciption of yourself), even tho I bet it's greatly exaggerated I think your husband adores you.
May is melanoma month?? I did not know that!! What should we do to celebrate? Wear black?
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- April 28, 2011 at 2:58 pm
Hi Janis…
Yes, May is Melanoma Month. Don't know if it all over the world, but the majority of members here live in the USA and I go by that. And no exaggerations. I had a primary on my back (neck) 4.00 mm did not have a sentinel node (wasnt available in my community hospital) but the rest of pathology going on that is stage 11 that was 2004.
Then in 2007, a second sort of primary popped up called a LMM (lentigo maligna melanoma) on my lower right eyelid (I thought it was mascara though dumb me, forgot I do not wear makeup) and it would not come off. Had several biopsies on it, then it was deemed to be completely excised. So had a full thickness skin graft and a new ear-lid was made. (minus lashes of course) Then that same year they discovered I was NOT SENILE or DEMENTED (well not medically) haha and through MRI and finally a spinal tap, they deemed me a N.P.H. patient, and I had to have a 'Ventricular Periteneal Shunt installed.
In 2009 I had a boob reduction, or so I thought…hmmmm due to my hx of melanoma and I think the law here, maybe the pathology from the reduction showed nasty old Breast Cancer in two breasts. (there went my lovely……..) so bi lateral mastectomy. this time our hobbithall had the means of doing a sentinel node thingy, and (boy did that hurt) but the tissue was so messed up I ended up with 3 nodes from one side and 8 from the other side being removed, and voila no cancer, so I am here.
I just roll with the punches, along with love and freiendship from folks here. (oh ya and family too) I have two kids aged 35 and 31 and been married to dear hubby for 42 years now. And my mom who is 93 lives here and I sort of take care of her.
SOOOO I also go camping and tell the terror tales here after the fact.
Welcome to the crazy world of OTBB.
Bonnie
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- May 2, 2011 at 3:38 pm
Oh Janis you are sooooo sweet.
I will have to ask my DH if what you say is true! I hope that you can continue to post here, and enjoy the tales that oft happen. Soon I shall be camping in the WILDS of the northern woods here, and well…. perhaps there will be some stretching of the truth, but perhaps not.
This year our adult kids are joining us ON THEIR OWN SITES usually they muck in with us, makes for crowded Bonnie and Bob spot. wall to wall tents or some sort of homeless shelter perhaps. But now, each with their respective significant others, they are around us, but paid for their own wheeeeee! I shall mooch lunch off them.
For two weeks, I try to forget everything, but as you know from yourself that is hard to do. But we all need a break from ailments. I think melanoma patients and caregivers need it mostest!
It is raining today, but this Sunday is Mothers Day. Daughter and I head to Church, then her treat is we go to purchase plants from a local nursery. Her finance, and our Sonny boy, will be here helping DH continue on with these never ending renovations.
Our two cats will continue to walk on freshly laid tiles, and cause Bob to yell and turn purple. (not very fashionable is purple) on him that is.
Take care.
Bonnie
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- May 4, 2011 at 4:44 pm
Oh I love your comments. DH = Dear Husband DD = Dear Daughter. But designated husband is not too shabby either.
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- May 4, 2011 at 4:44 pm
Oh I love your comments. DH = Dear Husband DD = Dear Daughter. But designated husband is not too shabby either.
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- May 2, 2011 at 3:38 pm
Oh Janis you are sooooo sweet.
I will have to ask my DH if what you say is true! I hope that you can continue to post here, and enjoy the tales that oft happen. Soon I shall be camping in the WILDS of the northern woods here, and well…. perhaps there will be some stretching of the truth, but perhaps not.
This year our adult kids are joining us ON THEIR OWN SITES usually they muck in with us, makes for crowded Bonnie and Bob spot. wall to wall tents or some sort of homeless shelter perhaps. But now, each with their respective significant others, they are around us, but paid for their own wheeeeee! I shall mooch lunch off them.
For two weeks, I try to forget everything, but as you know from yourself that is hard to do. But we all need a break from ailments. I think melanoma patients and caregivers need it mostest!
It is raining today, but this Sunday is Mothers Day. Daughter and I head to Church, then her treat is we go to purchase plants from a local nursery. Her finance, and our Sonny boy, will be here helping DH continue on with these never ending renovations.
Our two cats will continue to walk on freshly laid tiles, and cause Bob to yell and turn purple. (not very fashionable is purple) on him that is.
Take care.
Bonnie
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- April 28, 2011 at 2:58 pm
Hi Janis…
Yes, May is Melanoma Month. Don't know if it all over the world, but the majority of members here live in the USA and I go by that. And no exaggerations. I had a primary on my back (neck) 4.00 mm did not have a sentinel node (wasnt available in my community hospital) but the rest of pathology going on that is stage 11 that was 2004.
Then in 2007, a second sort of primary popped up called a LMM (lentigo maligna melanoma) on my lower right eyelid (I thought it was mascara though dumb me, forgot I do not wear makeup) and it would not come off. Had several biopsies on it, then it was deemed to be completely excised. So had a full thickness skin graft and a new ear-lid was made. (minus lashes of course) Then that same year they discovered I was NOT SENILE or DEMENTED (well not medically) haha and through MRI and finally a spinal tap, they deemed me a N.P.H. patient, and I had to have a 'Ventricular Periteneal Shunt installed.
In 2009 I had a boob reduction, or so I thought…hmmmm due to my hx of melanoma and I think the law here, maybe the pathology from the reduction showed nasty old Breast Cancer in two breasts. (there went my lovely……..) so bi lateral mastectomy. this time our hobbithall had the means of doing a sentinel node thingy, and (boy did that hurt) but the tissue was so messed up I ended up with 3 nodes from one side and 8 from the other side being removed, and voila no cancer, so I am here.
I just roll with the punches, along with love and freiendship from folks here. (oh ya and family too) I have two kids aged 35 and 31 and been married to dear hubby for 42 years now. And my mom who is 93 lives here and I sort of take care of her.
SOOOO I also go camping and tell the terror tales here after the fact.
Welcome to the crazy world of OTBB.
Bonnie
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- April 27, 2011 at 11:53 pm
Quick look- thought this said CRAP. I'm glad it wasn't the topic. think that would be a little too much info to share 🙂
Bonnie, I look at any health crusade this way—very difficult and time consuming to change a person- it has to come from within. A lot of damaging sun exposure is habit and desire. Many need a DRUG to break addiction to their bad habit…I can't be a drug for anyone. It's not my right to insist the healthy carry my burden…most likely they will not deal with this disease or any of the other issues I feel are important concerns. People make choices, deal with their feelings and health in ways that were formed long before I came into the picture. When most people ask how you are- they really don't want to know. Same with sharing health stories and cautions with random strangers …unless you are an expert in the field no one is really listening. Individual counsel about health isn't going to accomplish much. It may make you feel better -but watching others roll their eyes, disagree or argue seems a frustrating use of energy and resources. Fellow patients ( or those directly /painfully related to someone with a particular disease)are enthusiastic listeners and will cheer you on. Beyond that-regular ( polite) listeners are nodding and waiting to tell you about the FABULOUS pair of shoes they just purchased. It's also a little denial — how we all cope with the horrific things that go on in the world- you must protect yourself somehow. I can't go to the places in my mind that enrage me- can't really DO anything about any of it– alone. So if you are interested in making the biggest bang for your time and energy…you join ( or donate) respected groups you believe can motivate people to consider your topic. There are many disgusting things going on in this world – people make their own lists of concerns and get to choose the order of importance in their lives.
Now– if you want to argue about non-life threatening, scary shit- THAT is where the real fun is to be found when picking fights with strangers 🙂 Oh, and shoes…not much to worry with shoes.
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- April 28, 2011 at 3:10 pm
Oh ya Rox I agree with all you have said. But this was here in MY CITY not in some other country, and the one person talked about her astethtian (how can I kknow how to spell something) ? said…. the sun doesn't cause skin cancer, sun screen does. and that she (the poster) would simply just take her chances. That angered me, only prob cos so many of uf lose the battle. But I think that like myself, I never really heard of melanoma as a word. I heard of skin cancer yes.
I just want people to be totally aware of the possiblity of the dangers. and be smart.
If I was a shopper prob I would have more fun, but (shhhh) I hate shopping. except for strange things. (in middle of home renovations so haunt the home depot stores.)
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- April 28, 2011 at 3:10 pm
Oh ya Rox I agree with all you have said. But this was here in MY CITY not in some other country, and the one person talked about her astethtian (how can I kknow how to spell something) ? said…. the sun doesn't cause skin cancer, sun screen does. and that she (the poster) would simply just take her chances. That angered me, only prob cos so many of uf lose the battle. But I think that like myself, I never really heard of melanoma as a word. I heard of skin cancer yes.
I just want people to be totally aware of the possiblity of the dangers. and be smart.
If I was a shopper prob I would have more fun, but (shhhh) I hate shopping. except for strange things. (in middle of home renovations so haunt the home depot stores.)
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- April 27, 2011 at 11:53 pm
Quick look- thought this said CRAP. I'm glad it wasn't the topic. think that would be a little too much info to share 🙂
Bonnie, I look at any health crusade this way—very difficult and time consuming to change a person- it has to come from within. A lot of damaging sun exposure is habit and desire. Many need a DRUG to break addiction to their bad habit…I can't be a drug for anyone. It's not my right to insist the healthy carry my burden…most likely they will not deal with this disease or any of the other issues I feel are important concerns. People make choices, deal with their feelings and health in ways that were formed long before I came into the picture. When most people ask how you are- they really don't want to know. Same with sharing health stories and cautions with random strangers …unless you are an expert in the field no one is really listening. Individual counsel about health isn't going to accomplish much. It may make you feel better -but watching others roll their eyes, disagree or argue seems a frustrating use of energy and resources. Fellow patients ( or those directly /painfully related to someone with a particular disease)are enthusiastic listeners and will cheer you on. Beyond that-regular ( polite) listeners are nodding and waiting to tell you about the FABULOUS pair of shoes they just purchased. It's also a little denial — how we all cope with the horrific things that go on in the world- you must protect yourself somehow. I can't go to the places in my mind that enrage me- can't really DO anything about any of it– alone. So if you are interested in making the biggest bang for your time and energy…you join ( or donate) respected groups you believe can motivate people to consider your topic. There are many disgusting things going on in this world – people make their own lists of concerns and get to choose the order of importance in their lives.
Now– if you want to argue about non-life threatening, scary shit- THAT is where the real fun is to be found when picking fights with strangers 🙂 Oh, and shoes…not much to worry with shoes.
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- April 28, 2011 at 2:39 am
Spots around your liver? I hope you are ok Bonnie. Keep us updated and get those docs to work for you pronto!.
Keep on fighting the fight sweetie. Here's to you, and happy belated Easter.
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- April 28, 2011 at 4:59 am
You are just the sweetest, most solicitous , genuine, Off-Topic poster EVER. BUT–do you like shoes, badminton, gyros, hermit crabs, the color blue? Are you afraid the Hadron Collider particle accelerator will eat the world ( have you ever seen THE LANGOLIERS—oooh, scary), think Yellowstone is ready to explode,aliens are already here or worry Taco Bell beef isn't real? Do you watch Celebrity Apprentice, PBS..or the Housewives franchises? Do you air dry or blow dry your hair? Ride a bike, whistle, dance? Do you play an instrument, eat sushi, drink lemonade?Are you partial to dark or light chocolate, coffee or tea?Do you wear boxers or briefs? Have an accent ( NY?) Do you wear a watch? Left handed or right ? Bath or shower? Lawn service or DIY…rider or push mower or both? Do you fertilize your lawn? Weed and feed? Did you take your wife to the prom? Is she taller than you are? Did you date 250 girls when single or 3. Blondes, Brunettes or Redheads??? Do you go to the movies, buy them or are you a Netflix guy? Do you eat popcorn with fake butter or are you ju ju bead lover? What is your favorite song AND fav movies/books/clothing/Beatle/Flintstone/Brady daughter? Rerun or first run? Do you get any magazine subscriptions? Bookstore or Amazon? Newspaper delivery? Lakes or Ocean, mountains or beaches, hot or cool weather lover? Do you buy your wife flowers, baubles or power tools? Do you dust and do the dishes,can you cook ( on the stove, in the oven, the grill, microwave ) ? Were you a nice little boy or a terror? Did you look up girl's skirts via their patent-leather maryjanes? Play with action figures, build rockets, read comic books? Betty or Veronica?
I know you have Melanoma, despise free speech and that you have mad bad taste in YOU TUBE videos, but I NEVER EVER read anything about the little bits- the real life *stuff*— like your shoes- why is that, John ? Makes me very curious–surely you are not barefoot at the clinic? When I'm not picturing you shaved bald in your JCPenny suit ( you did share THAT with us, right?) I see you in a pair of beat-up New Balance with remnants of pet goo on the sole. True or what?
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- April 28, 2011 at 4:59 am
You are just the sweetest, most solicitous , genuine, Off-Topic poster EVER. BUT–do you like shoes, badminton, gyros, hermit crabs, the color blue? Are you afraid the Hadron Collider particle accelerator will eat the world ( have you ever seen THE LANGOLIERS—oooh, scary), think Yellowstone is ready to explode,aliens are already here or worry Taco Bell beef isn't real? Do you watch Celebrity Apprentice, PBS..or the Housewives franchises? Do you air dry or blow dry your hair? Ride a bike, whistle, dance? Do you play an instrument, eat sushi, drink lemonade?Are you partial to dark or light chocolate, coffee or tea?Do you wear boxers or briefs? Have an accent ( NY?) Do you wear a watch? Left handed or right ? Bath or shower? Lawn service or DIY…rider or push mower or both? Do you fertilize your lawn? Weed and feed? Did you take your wife to the prom? Is she taller than you are? Did you date 250 girls when single or 3. Blondes, Brunettes or Redheads??? Do you go to the movies, buy them or are you a Netflix guy? Do you eat popcorn with fake butter or are you ju ju bead lover? What is your favorite song AND fav movies/books/clothing/Beatle/Flintstone/Brady daughter? Rerun or first run? Do you get any magazine subscriptions? Bookstore or Amazon? Newspaper delivery? Lakes or Ocean, mountains or beaches, hot or cool weather lover? Do you buy your wife flowers, baubles or power tools? Do you dust and do the dishes,can you cook ( on the stove, in the oven, the grill, microwave ) ? Were you a nice little boy or a terror? Did you look up girl's skirts via their patent-leather maryjanes? Play with action figures, build rockets, read comic books? Betty or Veronica?
I know you have Melanoma, despise free speech and that you have mad bad taste in YOU TUBE videos, but I NEVER EVER read anything about the little bits- the real life *stuff*— like your shoes- why is that, John ? Makes me very curious–surely you are not barefoot at the clinic? When I'm not picturing you shaved bald in your JCPenny suit ( you did share THAT with us, right?) I see you in a pair of beat-up New Balance with remnants of pet goo on the sole. True or what?
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- April 28, 2011 at 3:13 pm
Oh thankyou John.
My question is if they see spots, on a CT done with contrast (both sipping and injection) then why would they wish to do a MRI it is beyond me. I am having enuff right now, trying to deal with being a snuffleupagus person, who sounds like Darth Vadar all they while listening to my mother's apartment and hearing weird noises when she is asleep. I swear the house is haunted.
My dear brother when he would visit us from Japan, would bless the house when he left, (he was a Buddhist) and he always said something was dark here. HMMMMM
not even that old of a house!
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- April 28, 2011 at 3:13 pm
Oh thankyou John.
My question is if they see spots, on a CT done with contrast (both sipping and injection) then why would they wish to do a MRI it is beyond me. I am having enuff right now, trying to deal with being a snuffleupagus person, who sounds like Darth Vadar all they while listening to my mother's apartment and hearing weird noises when she is asleep. I swear the house is haunted.
My dear brother when he would visit us from Japan, would bless the house when he left, (he was a Buddhist) and he always said something was dark here. HMMMMM
not even that old of a house!
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- April 28, 2011 at 5:35 am
Bonnie, Bonnie, Bonnie.. have I told you lately that I love you? I love you!! You've been through so much, and still keep an amazing attitude!
Praying hard those 'lesions' on the liver are just hemangiomas. I've known TONS of people who have those benign things in/on their liver, and they're fine. My niece had them on her liver; my daughter had one on her head; John's granddaughter has a small one on her face.
Keep us updated, you dorky, earlid-wearing, boobless snuffy shunted Princess!!! *Hugz*
ps.. I love you!
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- April 28, 2011 at 3:17 pm
Oh Lisa…. I am thinking postive that my liver spots, maybe are hemogiomas (to me I say Heemoegeemas) and are caused by my hoity toity life style, of sipping champagne and eating Lob-i-stirs and of course hunting bllue berries in bear country.
I really chuckle aloud when I think of the upper chest band thing, that kept slipping down over boobless chest and the poor tech just had to fashion bra straps. hahahha I bet when I go back in June for a follow up sleep study with CPAP in hand, he will either turn and head out fast as his legs will go, Or he will say….. Right…. my sleepless in Oshawa patient is BACK no nodding off at the control panel tonight!
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- April 28, 2011 at 3:17 pm
Oh Lisa…. I am thinking postive that my liver spots, maybe are hemogiomas (to me I say Heemoegeemas) and are caused by my hoity toity life style, of sipping champagne and eating Lob-i-stirs and of course hunting bllue berries in bear country.
I really chuckle aloud when I think of the upper chest band thing, that kept slipping down over boobless chest and the poor tech just had to fashion bra straps. hahahha I bet when I go back in June for a follow up sleep study with CPAP in hand, he will either turn and head out fast as his legs will go, Or he will say….. Right…. my sleepless in Oshawa patient is BACK no nodding off at the control panel tonight!
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- April 28, 2011 at 5:35 am
Bonnie, Bonnie, Bonnie.. have I told you lately that I love you? I love you!! You've been through so much, and still keep an amazing attitude!
Praying hard those 'lesions' on the liver are just hemangiomas. I've known TONS of people who have those benign things in/on their liver, and they're fine. My niece had them on her liver; my daughter had one on her head; John's granddaughter has a small one on her face.
Keep us updated, you dorky, earlid-wearing, boobless snuffy shunted Princess!!! *Hugz*
ps.. I love you!
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Tagged: caregiver, cutaneous melanoma
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