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Old 03-20-2008, 10:43 PM   #1
Bill
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Red face Wow, what just happened?????

"The Shape-shifter" This is all true. Twelve years ago, I spent a few years in Arizona, with my first wife, Linda, and my 3 awesome kids, Erica, Daniel, and Zachary. I'm sorry if this story get's a little long-winded, or rambley, but I've never written it down, only told it. Actually, I almost deleted it from the voting competition, but kept it in there. My son, Daniel, around 13 at the time, had signed up for a summer hiking program, where other kids his age and several teachers and whatever parents cared to accompany them would go on various day hikes around the Phoenix area. The last trip of the season was a weekend camping trip to Cottonwood State Park. My wife, Linda, had been on several day trips with the group, but the two teachers arranging the overnighter had trouble rounding up parents that would be willing to go to Cottonwood and spend the weekend. As I had slept once or twice outdoors, my wife volunteered me to be the third chaperone so that the trip could take place. I packed up my gear, and Dan and I got on the bus with 20 or so young teenagers and 2 teachers to drive up to Cottonwood. We got there midafternoon and had a large group campsite. The male teacher, let's call him Mark, a Marine, and I walked the perimeter, and agreed, a triangle shaped group site, only one way in and one way out, very secure. We three adults set up our tents quickly in the late afternoon and then helped the kids set up their tents. The group had dinner and we 3 adults agreed that at any given time, one of us would be awake and patrolling the campsite, and keep the fire going down near the point of triangular campsite. I had 10pm-12:00, Mrs. Blank had 12:00-2am, and Mark had 2am and then just stayed up. At 9pm, we put all the kids into their tents, and things started to quiet down. Mark and Mrs. Blank retired to their own tents and I took first watch. I don't do drugs, and on this trip, no beer. It was a little chilly, so I cooked up a little hot chocolate, and all was quiet as I sipped it, and thought, let me go down to the fire and keep it going for the next shift. As I approached the fire, I stopped dead in my tracks. Opposite the fire from me was a man, in jeans, thin, about 6'2", with long dark hair parted in the middle, in a flannel shirt staring into the fire. My first thoughts were, "how did he get back here", and then"there's no way he's getting anywhere near those kids" . Okay, get ready for the weird part. Just as I opened my mouth to confront him, he calmly lifted his eyes from staring into the fire and looked into my eyes, and at that point, he changed, or transmorphed, don't know any other way to put it, into a flat black buck deer and without a sound turned and bounded with 3 or 4 hops away from me and over a fence. The next day, I checked the perimeter again, and that whole area was fenced in with sheer drops all around. I found no tracks, and the whole event was soundless. When our trip was over, I talked to my Arizona friend Pat, and he told me, "Billy, my people have lived here for over 3 hundred years. What you probably saw was an old Indian from somewhere on a vision-quest and he was attracted by your fire and when you came up, it startled him and he left, that's all." I was stunned, that he believed my story. "Billy, Pat said, that's tame to what we have seen". I told the story to my friend Joel as well, Lived in the South Pacific for 25 years, and said, Bill, I've seen things on these islands you would'nt believe. My best friend, Todd, said, "you saw a shapeshifter" I can still see it like it was yesterday. Please post and tell us all what you have all seen that is outside the norm.
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Old 03-20-2008, 11:38 PM   #2
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Very cool story!!! Since you asked for out of the norm, here goes...One night I was in my bedroom reading. Corner bedroom, second floor overlooking the street. We had no street lights at the time, but we did have a nearly full moon, so the street was pretty bright. Everyone was sleeping except me and my dog. He was outside on the driveway. I know this because he starting barking, then screeching bloody murder. I jumped out of bed and looked out my window to see what was up. There were 2 figures outside at the end of my driveway. One was black and one was white. I don't mean like African American and Caucasian, I mean just black and just white. Both were tall, almost elongated and had long straight hair. They both wore long flowing robes that matched their hair - black or white. I could not see faces, just the long straight hair hanging down. My dog kept barking. He was backing away from these beings. The freakiest thing about them, was that I could not see feet. They floated past my house - close to the ground, but definitely floating. I watched (as did my dog) until they passed the next house, and then just vanished - not in a poof kind of way, but more a fading. I was not drunk or high in anyway. I was not dreaming. There was no space ship. I don't know what these 2 things were, I just know I saw them...
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 03-21-2008, 05:57 PM   #3
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My husband and I moved into a nice rented house. We lived there 2 years. The first yr I was pregnant with our first child and the second was her first yr of life. When she was about a yr old, we bought a house and were moving out.

When we first rented the house, we were so excited because it was a house and we could buy a clothes dryer and washing machine as there was a basement. Prior, we had to go to laundermats. Both of us always felt sick and weird going in the basement - much more that I usually did when I was a child. We felt we saw a young man down there but never really spoke of it to anyone else but ourselves. If you knew my husband, you would know that he wouldn't believe me if I told him of this but it happened to him too.

The day before we moved out of the house the man who delivered heating oil came to do a reading on the tank so that our landlord could reimburse us for the unused oil we had purchased. The oil man was quite elderly and had been servicing the house and the neighborhood for a long, long time. We had never really spoken to him because the tank could be filled from the outside and both my husband and I worked. Even when I had the baby and was home a couple of months, it was summer so he never came. He told us that the original owners of the house had a son who hung himself in the basement - right where the washer and dryer were.

Boy, we were so glad to move to our new house the next day!!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-21-2008, 06:40 PM   #4
ita
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I don't have any stories but I gotta tell ya, you are freaking me out!! I can't even watch scary movies at night because I start seeing things and thinking things will happen to me.

I feel like we should be around a camp fire telling stories. I, for one, would not be going to sleep.

ita
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Old 03-21-2008, 08:00 PM   #5
Bill
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Wow, Madam Dubois, and Becky, you're freakin' me out, too. My skin is all prickly. With my story, people that know me believe me, but others don't quite know how to take it.
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Old 03-21-2008, 09:57 PM   #6
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I love 'em all! Good stories! My only story that might fit is the one about my mother-in-law about 4 months after she passed away... We were visiting my father-in-law in Florida for a week, and one morning M. and his dad awoke before dawn to take a 1/2 day trip that I wasn't going on with them. So, I slept in his sister's old bedroom so I could sleep in undisturbed. When they were leaving that morning, I awoke in a half-awake fog when I heard the garage door go up. I remember noting that dawn was just breaking as I saw a mild light on the wall that my head was turned toward, and I was sleeping on my stomach. I started to doze off again when suddenly I felt a weight sit down on the end of the bed... I tried to open my eyes and shift and turn to see who it was, figuring that M. was stopping in to kiss me goodbye as they left. Then I heard the garage door go down and the car drive away... but the weight was still sitting on the end of the bed. I tried and tried to wake up and turn over, but I was paralyzed in my position, and then I felt the most gentle and comforting sensation on my back, like some sort of energy was rubbing my back, but without really touching me. It was so loving and gentle that it lulled me to a half-doze again, and I stopped worrying about opening my eyes or trying to turn over. I totally relaxed. It was amazing. And after about 15 seconds, I suddenly knew that it was a visit from M.'s deceased mom. It felt exactly like one of her famous back-rubs. A few seconds later, I suddenly felt the energy that had been rubbing my back and the weight at the end of the bed just evaporate, kind of like it was been suctioned away, but not in a jarring way. At that moment, I was no longer paralyzed and was able to open my eyes, turn over and sit up (like a bolt of lightening!) and I smelled a faint smell of cigarettes (she was a lifelong smoker who died of lung cancer) and her perfume. It was so freaky and so awesome at the same time. I will never ever forget that experience and the feeling of her energy sitting on the bed. It was totally cool.
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-21-2008, 11:03 PM   #7
Bill
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Wow, that's an awesome story, too. What's strange is that Nikki had the same thing happen to her in our bed, a definite feeling that someone had sat down on the edge of the bed, and more than once, and when her sister, Debbie, came to visit, and slept in the spare bedroom, the same thing happened to her, and I have an open mind, but also the analytical mind of a scientist (ok, I hear it now, hahahaha, "Bill, the scientist, yeah, right"), I asked all of the right questions,"were you asleep and then awoken?" " no, I hadn't gone to sleep yet", etc. Well, then one day, I laid down in bed, turned the light off and within 2 seconds, felt my side of the bed go down just like someone had sat down on the edge of the bed, and I knew exactly what Nikki and Debbie were describing. I just laid there, not moving, and after 10 or 15 seconds, the mattress creaked and rose up again and the presence was gone. But it was weird.
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Old 03-22-2008, 06:15 AM   #8
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I love this thread!!! I am sure many others have stories too, but just feel funny telling. I'll tell another so that maybe they'll get the nerve to post...This is not an actual visit (I have had a few of those), but I do believe I have a guardian angel that has protected me from time to time.

I was about 20ish and fancied myself a photographer. It was late one night, and I was on my way home from where ever...I passed a church and thought that with the almost full moon behind the steeple, I had an amazing picture. I pulled in to the dark parking lot and positioned my car so that the headlights would shine on the building. I got out of the car and walked a few feet away from the car...my headlights went dead. This was weird because the engine was still on. I walked back to the car and the lights turned back on. Okay, I thought this was a little weird, but I still didn't get it. I walked away from the car again to get my shot, and yup...the lights went out again! I got a little nervous, and my hair was standing on end. I turned towards the car and the lights went back on. I got in the car and drove away...Who knows???
Was my angel telling me to get out of the dark, lonely parking lot because someone was lurking??? I'll never know, but I do believe if I stayed, something would have happened...
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 03-22-2008, 10:01 AM   #9
Becky
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I do have 2 other stories. Both involve my father who passed away 17 years ago.

Here's the first. The second I will write later as I don't have alot of time now and the second one is long.

When I was 11 years old my father had a month long trip to Europe. Although he would go on business trips, they were usually a day here or there, never like this.

When he got home, he brought lots of gifts for all of us kids and my mom. One gift he gave me was a wooden music box that played "Shall We Dance?" from the musical "The King and I". It is carved with a boy and girl dancing and woodland animals all around watching them dance.

The mechanism is winding up with a pin that you pull out and it plays and if you push the pin in it stops playing.

I still have this music box. It is on my bedroom dresser. Anyway - this music box stopped playing. I had it as a decoration in the baby nursery and it just didn't play anymore. My husband even took the thing apart and sprayed WD-40 on it years before as he felt the mechanism corroded over time.

Well, as I said, my dad died and the day after the funeral I was back at my house (the one we bought when we moved from the rented house) and my husband and I were just sitting around. I was crying because my hub's parents had just sent me a beautiful flower arrangement and suddenly we heard this noise. We started to look around and my husband said that one of the kids must have put on the radio. I listened and immediately said that it was my music box and it WAS (my husband had never heard it play as it was always "broken" since I knew him).

That music box plays to this day.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-22-2008, 10:54 AM   #10
Mary Jo
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2 stories to share

...although this story isn't about me, it is about a friend of mine diagnosed with ovarian cancer........ She was diagnosed about 1 year ago. Naturally she was very frightened and told me later that she would often pray to God for a sign that He was with her.........One night her twin sister came over for (as she calls it) sister time and they were in her bedroom, sitting on the bed watching TV. She said all of a sudden she felt this breeze and the "breeze" smelled very beautiful.....like the most beautiful perfume she had ever smelled. She said immediately both sisters looked at each other and asked "do you have perfume on?" To which they both said they didn't. My friend Ruth said she even went as far as to smell her twin's armpits to see if it was her deoderant. Nope. Anyway, they believe, as do I, that this was her guardian angel - letting them know she was with them.

Now the next story from her...................one day Ruth was at their Thrift store working (her and her twin own a thrift store and all monies go to "Second Paws" (an animal rescue) and our local Humane Society. Anyway, Ruth, was in the back room going through "stuff" and her neice came in. Her neice was trying to talk to her but Ruth said she was in one of her "chemo brain farts" and really wasn't paying attention to her or understanding what her neice was saying to her. Her neice went out of the back room to wait on a customer and came back later to the back room. She looked at her aunt Ruth and said "Ruth I saw your guardian angel!" Ruth was shocked......and Ruth said ..... tell me what she looked like..................!! Now mind you......Ruth told me she had NEVER told anyone how she pictured her "angel" only that she had named her Clair and that she had shared that name with her family. Ruth told me that she always pictured Clair as a pretty girl with dark curly hair. So again, Ruth asked her neice, "what did she look like and where was she?" Her neice told her that she was over in that corner and she had pretty dark, curly hair...........................

Very cool and heart warming. Wouldn't you say????? I love these kind of stories. It only confers what I already know - God and His angels are all around us - protecting and loving us - helping us in essence - as we walk through this life.

Ok, now I feel all warm and fuzzy..

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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Old 03-22-2008, 04:29 PM   #11
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Got a few of them to tell. My husband's grandpa lived and died in the house I currently live in. He smoked a cigar standing out on the front porch. We've always been able to see him standing out there, but there were 2 times we saw him here in the house. At the time we had a wood stove for heat, and just after we saw him in the upstairs hall we realized the chimney was on fire. Freaky! I decided if I ever saw him here again I was getting out! Second, this house used to sit across the road and was built in the 1800's. When my kids were little we had a woman in an old fashioned calico dress who would pull the cover up over my youngest son in his baby bed. Scared the crap out of my older son. My youngest son has also said he's seen my father-in-law here in the house too. Which one of these people it is that keeps my granddaughter entertained is beyond me. And the last one, as you know one of my coworkers died last fall from lung cancer. She used to smoke those little cigars the looked like cigarettes. One day we could smell them in the kitchen and in the walk-in-cooler. There's no vents in the cooler so we know it wasn't coming from there.
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st 1, gr 3, er,pr-, her2 +,
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Old 03-22-2008, 08:11 PM   #12
madubois63
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Keep 'em coming!!!! here's a few more...

One morning, my (now ex) boyfriend's niece was playing with a ball of bakery string (remember the old days??). Her mom asked where she got it, as she didn't have any in the house. Little Nicole said the man from her room gave it to her. Well, Rose almost hit the floor. Long before Nicole was born, Rose's dad had been sick and died in what was now Nicole's room. He had always collected the bakery string, made littles balls of it and always carried some with him...Nicole said he would come and visit her at night and tuck her in all the time.

One day while taking to my young son (several years ago), I was trying to explain something to him. He looked at me very seriously and said, "Oh, I remember that from when I was big before..." Freaked me out...

I have had MANY little visits from angels over the last few years. They come to tell me everything will be okay or just to remind me that they are around looking after me. I met Holly on the aol boards a few years back. We had many IM sessions and e-mails back and forth. One day while getting chemo, I overheard another patient talking to someone else about the support group she frequents on line. I asked her which one and she said aol. We exchanged screen names and realized we had "known" each other for some time. We became chemo buddies and would go out together from time to time. Holly got very sick very quickly and passed away before I was diagnosed with leukemia. At my darkest moments, I would find "pennies from heaven" everywhere. We had talked about pennies from heaven before, so I knew it was her. One day, I changed the sheets on my bed, went to sleep and woke up the next morning. I pulled the covers back, went to the bathroom and when I got back, there was a penny right in the middle of my bed. Everyone was sleeping, so I know it wasn't my kids. Okay, this was weird enough, but the same thing happened the very next morning. Same thing, got out of bed, went to the bathroom and came back to find a penny right in the middle of the bed. On the third morning, instead of a penny, Holly's husband called me. He was very upset and missing his wife so much. I told him that Holly had been visiting me and it just made his day. He was so happy to hear that she was saying hello.

I have made a lot of dear friends from the boards and have been lucky enough to meet some in person and create "real" relationships beyond the boards. Stephanie (not Steph from this site) and I met and became really good friends. She lives about 3 hours away, so we didn't get to see each other to often. After meeting me, she met Vicky from the aol boards too. They lived closer and she became really close with her too. Vicky became very ill and passed away. Steph called me to tell me, and I told her I already knew. She asked me how, and I told her that Vicky visited me that morning and left something for her. Same thing as Holly...I woke up, went to the bathroom and came back to crawl back in to bed. This time, there was a tiny little gold cross in my bed. Steph said that Vicky kept a tiny gold cross in her bible as a book mark and that she had it out the last time Steph had seen her in the hospital. I of course gave the cross to Steph...

I am sure I have more, but that's it for now...
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 03-22-2008, 09:56 PM   #13
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Oooo, mine's not that good, but I will tell it anyway. When I was about 20, I was in our upstairs bonus room wrapping a present (for one of my bridesmaids). My friend Melissa came over, and was standing the doorway talking to me. In the back of my mind, I kept thinking that someone was calling me--I couldn't hear anything (audible or otherwise). It was just a "hinky" feeling. I felt a hand grip my shoulder from behind. Not hard, not scary, just like if someone is supporting you by squeezing your shoulder. I flipped around, and there was nothing. I asked Melissa if she had seen anything, although I knew she hadn't!

I have thought about it many times. I tried to write it off as some sort of muscle spasm, but I know it wasn't. Have someone stand behind you, and gently squeeze your shoulder. No muscle spasm has that same feeling!

It was scary, yet comforting at the same time. However, I didn't really hang out in there too much after that.

Now, I am off to watch The Village. LOL

Take care,
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Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 03-24-2008, 10:32 PM   #14
hutchibk
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THIS IS A POST BY BILL - I JUST HELPED HIM MOVE IT TO THIS THREAD... men, I tell ya, sometimes they are so high maintenance, LOL!


Nikki and Bill see the "Shape"

In the house we live in, Nikki and I would often "see things". Often it was just a fleeting motion off to one side, sometimes near the floor, sometimes near the ceiling, and one or the other of us would say, "did you see that?" and often the other said, "yeah, I saw it, too" This event took place about 5 years ago. We had a Rottweiler, Wyatt, about 130 pounds, but he was solid muscle, long-legged for a Rottie, and he had the biggest head of any Rottie I've ever seen. The way our house is set up, Nikki and I often sat together on the couch watching movies or TV or whatever, and we could see right into the kitchen. Wyatt's water bowl was in the kitchen off to the right and his food bowl was in the laundry room off to the left (As you know, with big dogs, sometimes it's less mess if you don't have then right next to each other), so it was a common sight to see Wyatt pass through the kitchen from right to left going from his water bowl to his food bowl. So, we were sitting watching TV one night and movement in the kitchen caught my eye, a large black shape about the size of Wyatt (hard to miss him) going from the water bowl to the food dish I thought. Oh, it's just Wyatt, I thought, then I glanced down to my left and Wyatt was laying next to me on the floor by the couch. Sometimes my mind works quick as lightning, and I thought, "oh, I guess that wasn't Wyatt". I said nothing. Ten seconds later, Nikki said, "Did you just see that?" "See what?", I said. "That big black shape move through the kitchen near the floor just now. At first, I just thought it was Wyatt, but then I looked and he's laying on the floor next to you", Nikki said. I said, "yeah I saw the same thing you did, but I thought it was just me" Nikki, "no, it wasn't just you, we saw the same thing, it was that black shape we see moving around the house sometimes." I jumped up off the couch, grabbed my sword and rushed into the kitchen, with Wyatt on my heels and Nikki on my shoulder, and flipped on the lights in the laundry room, but found nothing. From time to time, we would see the black shape in the house, but never quite like that one time.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-25-2008, 07:54 AM   #15
lilyecuadorian
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Location: CHARLOTTE NC USA Home town (ECUADOR) South America
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wow

clueless
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 03-25-2008, 05:59 PM   #16
Becky
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When my father died my middle daughter (who was still the youngest then) and him were 2 peas in a pod. No one would ever dispute this fact. Even after he died, she would talk about him endlessly. One morning she told me that she visited Grandpa and she told me all about where she went to his shining house. She told me that my father then told her it was time for her to go home and that she couldn't stay there with him. She said he got really mad at her and finally he had to hit her to go home.

At the time, I used to go to my girlfriend's house for lunch everyday (brown bag it). She lived with her mother and her mom would make us tea and we would eat and then drive back to work. I told them about Leigh's "dream". Her mother freaked and told me that I needed to tell Leigh that she absolutely, positively was too young to go anywhere without me and she was forbidden to visit my father without me because she was too little to go by herself. She believed that my girl was visiting (and her description of the event sure sounded like it) and that she was there alittle too long and needed to return (or maybe not be able to). Then she gave some stories of her own (more posts for later). She freaked me but I did do what she said. I said it to my daughter nicely - that if she wanted to go visit PopPop, I had to come along.

So, about 2 months pass and she says to me that she went to visit PopPop but I shouldn't be mad because even though she didn't get me to come, Grandma came with her. She said that PopPop came to get her and when she said she couldn't go without me he told her they would go get Grandma and they did. She said they went in Grandma's room and sat on her bed until she woke up, then they left and she came home.

This was a weekend day so alittle later on in the day my mother calls me and says - yep -"I had a dream last night. My bedroom door opened and your father and Leigh were there and they were sitting on my bed." She said, "I swear to God they were really there. It seemed so real". Leigh was there and I told her to tell Grandma about her adventures (because it had to come from Leigh right then) and we all just about freaked. After that, I told Leigh she could never go with my father again - never.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-25-2008, 06:23 PM   #17
Bill
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Aw, man, Becky, you got me all chicken-skinned again. What a story.
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