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Mets Sisters Memorial Page

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Silicone Implants ?!
Mets Sisters Memorial Page
Mets Sisters Memorial page 2
Page left up in memory of the BCMets Crisis Fund
Lung & Chest area Mets (Symptoms) (3-7-06)
NIH's Explaination of METS
Neck area Mets Symptoms (added 2/20/06)
Diet, trials, exercise, support...( Ann Mc. sent to support group with links 2/7/06
Types of Invasive Breast Cancer (Ductal/Lobular)
Helpful Products List (Updated 4/9/06)
Bone Mets, Bone Marrow Biopsy "Listen!!!" (update 2/18/06)
Skull Mets Symptoms (updated 1/28/06
Brain Mets Symptoms (updated 2/20/06)
Chest Wall & Lung Symptoms (updated 1/28/06)
Eye Mets Symptoms (updated 2/16/06)
My BC Story (Sent to the Tryon NC bullentin)
The Business of Cancer
Inflammatory Breast Cancer
How Someone Discovered they had Paget's Disease
Ozdes Bodur's Story ( from Turkey)
Catherine's Mom, another Victim...
My DX
Tumor Markers

Pam Daley passed away. She developed an infection that was just to much to fight. She was a fighter though, and she tried very hard to win this battle. I know how hard this is for all of you, having watched Pam go through all the pain and suffering. Please know that she did not have any pain in the end - she went very peacefully. I know that Pam has said it was very sad for her to all of a sudden not see someone on anymore - and wonder. I wish you all the best. Pam sister, Marsha"
***Below are Some of Pam's Posts*** From: Pamela Daley Date: Thu May 19 2005 i just found this site, and i am glad to see that there is a lot of hope out there from others dealing with this disease. i had stage 1 bc in 1999, and was told i was cured, but in 2002 i noticed a small raised area on my chest wall, my onc. said it was nothing and not to worry. upon my routine physical in 2003 , my regular doctor drew a cea and it was found to be up. still my onc. said it was nothing to do with the bump on my chest wall. i decided to go to a large cancer center, where i was unfortunetly dx'd with bone mets. i was devastated, as you all well know. i was 45 with my first dx and 50 with the met dx, i was divorced in 2003 and was just beginning a new relationship when this all happened. i was driven by fear and decided not to see the new man, and have since re-opened a relationship with my ex husband, but this too is driven by fear and i'm very unhappy in it, all the same old issues still there. i am afraid i will not be able to work as i am now and will need some sort of financial support, so i am trying to make it work. that is my question, has anyone out there continued to work, either full or part time and went thru chemo. right now i am in a clinical trial for a new way to deliver taxol, so there are none of the severe side effects, i've just finished my second round, and i will get a scan in 2 wks, i'm not noticing any change in the large bump on my chest wall, and i also have liver mets that was just dx'd in april. its all a big mess and i'm having a hard time with all of this. i have four great kids and 2 little grandchildren. any info would be helpful. thanks in advance.
From: Pamela Date: Thu Sep 08 2005 hi all thanks to everyone that has sent me their advice/encouragement re: taste buds gone with taxotere. I love good food and now have no interest, also mouth sores are appearing, so it hurts to eat. i'm going on a much anticipated vacation to the west coast this saturday, first time out west for this east coast girl! i'm so excited!!! just wish all this crap would go away, so i could enjoy it more...the H/F is subsiding, could not walk on this past tuesday, so awful, but off the xeloda for a bit and its starting to clear thank GOD, so i plan to do a little hiking in muir woods, any suggestions for some good takes would be appreciated by all those who live in or near the area, i decided to take advantage of great air fares this past july, made reservations, i was looking in the paper at the fares, and thought, someday i would love to do that....than started thinking, hey! this is someday, so booked a week! also...someday i would love a plasma TV....ran to sears the other day....this is someday...bought a great plasma TV, i guess my attitude has changed :), love to all, pam NH
 
From: Pamela Date: Fri Oct 14 2005 dear julie, just want to say i know how you feel, and i'm sorry that you are going thru this, my cancer has also shown signs of spreading and i found out yesterday after ct scans, bone, brain, but not to my brain, but liver is worse :( i know that awful feeling of despair, i cried all day yesterday, but i just want you to know i'm praying for you and all of us dealing with this awful disease, i don't know why, either that any of us have been dealt this, i don't think God wants any of us to suffer, after my crying spell, and help from my sisters and friends for moral support, i feel i'm still going to put up a big fight, and hopefully get this thing into remission, and i'm hoping you will do the same, hugs and best wishes, pam from NH From Pam: i had to go on the taxotere, my hair is falling out, so i buzzed it, now i look like a 13 yr old boy!! ugh :( , but its only hair, i'm getting over it, i bought the most beautiful wig, and so funny, today while i was filling up on the white gold (gas), i had several men going by one waved at me, and the others were staring at me, so funny, i thought, if i took off the wig, they'd of died!!! From Pam: I am very sad to hear of Alley's passing, she sent to me many messages of encouragement. Hearing that she has died, brings to the surface the cold cruel facts of MBC, and what we are facing, but we can only continue to fight, chin up and continue to live. Bless Alley and all of us, Pam NH **********************

Julie, loving wife, mother and friend, past away January 22nd, 2006 at 2:48 am

From: Julie Dixon Date: Fri Mar 25 2005 March 8th I was diagnosed with breast cancer. After a PET scan the following Wednesday it showed lesions on the spine, rib and pelvis. The doctor now says I have Metastatic Breast Cancer and they can't operate. My first round of treatment that consisted of Herceptin, Taxol and Paraplatin was on Monday the 21st. It has been a long week so far. Monday took 5 hours for the treatment. Tuesday I felt like a bull and could do anything so I worked the whole day. Wednesday was not a good day...felt shakey and tired. Thursday...oh god the heartburn was unbearable and I just wanted to sleep. Today, I finally feel much better and hope to have a great weekend. I have a 4 year old son who has been very patient with me and understands that mommy has been tired. My hubby is wonderful and is with me all the way. I was blessed to speak to a wonderful survivor of mets named Karen who also posts in this room and lives very close to me in Venice, Florida. (Julie and Karen became close friends and visited with each other, Karen is truly a Saint) I started a webpage to help me and share with my friends and family along the way my progress. I would love for you to enjoy it as well and get to know me. I can beat this and live a life filled with passion, faith and courage. Julie Dixon, Venice, Florida (Julie did beat this. It did NOT stop her from living a life of passion. She did not loose her faith. She had the courage to give it her best shot all the way!!! She even told me on the phone to give her a call anytime I needed support. Death doesn't mean she got beat, she's gained so much more now.)

Click To View Julie's Website

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Pamela Rhodes Hogan, age 42, of Huntsville passed away Tuesday, January 10, 2006. Mrs. Hogan was a member of Grace United Methodist Church in Monrovia where she was a member of the choir. She was a teacher, taught in the Learning Resource Center @ North West Shoals Community College for several years and North Alabama Reading Aides (NARA). She helped organize the NARA Corporate Spelling Bee in the Shoals. Husband: Larry G. Hogan was an active member of online BC suport groups for his wife. In lieu of flowers, memorials may be made to The NorthWest Alabama Reading Aides (NARA) P.O. Box 391, Florence, AL 35631 ***********************************************************************************

Dear all, It is with deep regret I have to tell you that my wife Cecilia Eriksson 
passed away on December 6. Cecilia learned that she had liver mets in early November. Apparently, 
the cancer was spreading very rapidly at this point and she also had 
also had developed several small brain tumours, which we weren't aware 
about. These tumours, exacerbated by the blood thinner (warfarin) that 
she was taking (for reasons unrelated to her cancer) caused a subdural 
haematoma that she eventually died from. This happened quite quickly, 
and thankfully the process was short and relatively painless. Cecilia had a stubborn headache on the morning of the December 5 and we 
checked into the oncology day-clinic here in Malmo. Towards the 
evening, Cecilia was getting very tired and she eventually drowsed off 
into unconsciousness, never to wake up again. Even though we couldn't 
talk I was at least with her during her last few hours, for which I'm 
very grateful. Her parents who live a one-hour car ride away arrived 
just after Cecilia had passed away. After all these years knowing this day would eventually come, this was 
of course not the way we had expected it to end. None of us really had 
a chance to reflect and say goodbye in a proper way. On Sunday Cecilia 
had spent time with her family, playing with her two nephews. And in 
fact she had that week lined up with lots of activities and friends to 
meet. Although this quick turn of events was a terrible shock for me and 
Cecilia's family, every way we think of it now, we can't really imagine 
a better outcome given the way things were. And this gives us comfort 
and a sense of relief. Cecilia just fell asleep, unaware of what was 
going on. I was with her during all of her last day and she was feeling 
safe and in good care at the hospital. With the mets having spread so 
rapidly and to so many places, it could have become a much more 
difficult and painful process for Cecilia in the end. Cecilia's parents and I are going to meet with her oncologist to 
discuss the final phase of her illness. Cecilia was supposed to start 
Xeloda in February 2005, but had to stop. Ad the alternatives seem not 
to have worked at all... From the very start, Cecilia tried to learn everything she could on her 
disease. The incredible support, comfort, and strength through 
knowledge that she was able to find in your community was very 
important for Cecilia. I have quoted part of her last mail to the list 
below, where she describes her appreciation of this list and its people 
with her own words. Sincerely, 
Benjamin bweaver@malmo2.net 
http://home.malmo2.net/cecilia/en/ 
--------- From: Cecilia Eriksson Weaver 
Date: 8 november 2005 19.00.14 MET I have been a lurker for a couple of months, there has been so much 
going on healthwise and I haven't had that much energy to write. [...] 
things are not going very well for me I am afraid. I have had 
stereo-tactic radiotherapy (IMRT) to the bone mets in my neck. This 
seems to have worked quite well, and much of the pain is actually gone! 
We are going to check the whole spine with an MRI within the next 
weeks. I have got more and more pain in my hip area, and was radiated 
last week to calm these spots down. The pain has only gotten worse 
though, I am waiting for the benefits to kick in... I have had a lot of nausea the last 3 months. I have tried all kinds of 
drugs, but nothing seems to help, at least it can't help me all the 
hours of day and night. I am sick at all times, in the morning as I get 
up, or in the evening when I think, foolishly, that I am about to 
sleep. We first thought that it was because of my new chemo, the 
low-dose cyclophosphamide and methrotrexate, and I tried to see a 
pattern in it, but it's totally unpredictable. Now I saw the onc today, and she told me what we all have feared (and 
what I instinctively had understood) that I have liver mets. They are 
"multiple" and about 1-3 cms each, left and right lobe. The doctors had 
not discussed me in the terapeutical meeting yesterday, so "I am on the 
agenda" for Thursday's meeting. We will probably try Xeloda a 2nd time. 
I had a go at it last February, at a 75% dose, but I did not tolerate 
it well. I got terrible GI problems. But I don't want to give up on 
Xeloda yet, maybe we could start at 50% this time. We'll see. I am sorry for this long e-mail, I am going to stop nagging about 
myself, and go and get some dinner instead. I want all of you to know 
that I read your messages as much as I can, and feel very strongly for 
you. I get so much inspiration and knowledge from the women on this 
list, you are worth a million! Cyber hugs from 
Cecilia Eriksson Dx in 2000, 30 years old, mets in cervical spine (C2). ER+, PR+, Her2 
Neg 
2000-2001: Tamoxifen + Zoladex + Aredia 
2001: 4 treatments of EC (epirubicine + cyclophosphamide) 
2002: Femara 
2003: clinical trial Ibandronate for bone mets 
2003: Zometa 
June 2004: progression, new mets in cervical spine, weekly Taxol 
Sept 2004: Taxol failure, progression in C1-C2, new mets in lumbar 
area, Aromasin 
Febr 2005: Aromasin failure, progression all bone mets, start Xeloda 
and Navelbine 
Febr 2005: Stop Xeloda (due to side effects), Navelbine weekly 
August 2005: Navelbine failure, start oral cyclophosphamide + 
methotrexate 
November 2005: Liver mets, increase of bone mets

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Stacy made it into the kingdom of God on Tuesday December 21,2005 after a valient battle with cancer. For all of you who knew her well, she loved life, her family and would go above and beyond for anyone whom she came in contact. Stac became pro-active in the fight against cancer. She joined the Breast Cancer Cooalition Program for Androscoggin County 
and generated a program for breast cancer patients to recieve medical assistance. She advocated for the program so strongly that we ask that in lieu of flowers, donations be made to the National Breast Cancer Foundation at: http://www.nationalbreastcancer.org/contribution/cs-index.html Thankyou for all your prayers and support In His name, Roland and Branden Dumont Life is not measured by the number of breaths we take, but the moments 
that take our breath away..

Joan J
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I'm very sad to announce that Joan Jones Passed Away Nov. 3rd. She posted so many Daily Motivational Pieces that I'm sure many found as a way to pull themselves together and carry on. Thank You, Joan, for being there for us and finding a way to let us know of your passing.

From: Joan Jones
Date: Fri Apr 01 2005
I just came across this...have had it since the 80's and thought it might make some of you smile...
ABOUT A MAMMOGRAM
For years 'n years they told me, Be careful of your breasts Don't ever squeeze or bruise them And give them monthly tests.
So I heeded all their warnings And protected them by law ;Guarded them very carefully ;And always wore a bra.
After 30 years of careful care;The doctor found a lump ;He ordered up a mammogram ;To look inside that clump.
"Stand up very close", she said ;As she put my tit in line ;"And tell me when it hurts," she said ;"Ah, yes! There! That's fine".
She stepped upon a pedal ;I could not believe my eyes ;A plastic plate was pressing down... ;My boob was in a vise!
My skin was stretched 'n stretched ;>From way up by my chin ;And my poor tit was being squashed ;To Swedish pancake thin!
Excruciating pain I felt, ;Within its vise-like grip ;A prisoner in this vicious thing ,My poor defenseless tit!
"Take a deep breath," she said to me ;Who does she think she's kidding? ;My chest is smashed in her machine ;I can't breathe any, woozy I am getting.
"There that was good," I heard her say ;As the room was slowing swaying, ;"Now let's get the other one,";"Lord, have mercy," I was praying.
If I had no problem when I came in, ;I surely had one now...;If there had been a cyst in there, ;It would have popped her...POW!
This machine was made by man, ;Of this I have no doubt... ;I'd like to see his balls in there ;For a month he'd do without!

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Lisa died August 25, one month and 6 days after being diagnosed with stage IV BC, with mets in liver. This is all her onc in B'ham told us, I called and was given 
little info, even though Lisa had signed for me to be included in the 
info. They told me that she had "three spots on her liver" and no other 
organs involved. He gave her 1st and only chem on 7/25. By this time 
Lisa had such ascites that she was SOB...there was no help and no info 
from the onc. We went to Tulsa on 8/15, where she was told the liver was 
fully involved, her ovaries were tumor filled and the SOB was 
exacerbated by pulmonary effusions..all had to have been there 2 weeks 
earlier. At this point, there was nothing to do but comfort as she was 
in liver failure. She died on 8/26....maybe the month before she went to Tulsa would have not made a difference, but it was not until 7/25, after the chemo, that she became 
very ill. I know hindsight is 20/20, but trusting an MD when your gut is telling you different is not good, but when money is the prime focus of an onc..care is not the best. I only wish our 2nd opinion had not been so long. (sister) Pam My oldest son, and his wife have been trying to get pregnant for 9 years. She found out today that she is pregnant with due date May 18th (Lisa's birthday) and her Gyn counted back and told her conception was most likely 8/26/05 (the night Lisa died). "She is not dead, she is just away." This will be a very special grandchild for me, niece/nephew for Lisa and cousin for Lisa's son. My prayers are with all of you in 
your daily fight. Love Pam

Marilyn Moore Herring McClane, 43, died Thursday Nov. 10th 2005. The Children recieved Christmas Money from The BCMETS Crisis Fund and she was aware of this before passing. So I, Susan A. Thank you all for pulling together to make her final days a little better in knowing her children would be looked after for Christmas. Being a mom, I know this would make my passing a lot easier too. Why does this Breast Cancer have to take away all the good moms?

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Anne Silver, you will be missed !!!!
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Click on Photo to see the Memorial Page

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I'm Anne, which includes many things: poet, document examiner, friend, hiker, political activist, jokester. It doesn't include survivor, endurer, etc. Maybe that's denial, but I refuse to make it the centerpiece of a marvelous life where I've gotten my way most of the time. I think "survivor" was termed so the foundations can raise money by labeling us. The publicists have a lot of power in this, and we are subjected to what the public thinks about the labels they use. We could make a joke of it and say that we have breast cancer that flew the coop and roosted in other parts of our bodies, and we unroost them as they pop up. If someone asks more than you want to answer, take the microphone from their hand and tell them your life is not the Oprah Winfrey showbut thanks for caring enough to ask. From: Anne Silver Date: Sat Jul 16 2005 I've been going through changes and trying to orient myself. I keep seeing rats inside of me and that's not a good image. I am using the image of the rat to write the bad thoughts out of me. Soon I will turn it around and create a more wholesome ending. the funny thing is that 6 years ago I went to my mountain house and found a dead rat in teh kitchen. It completely ruined my week and I was hysterical over it. I thought that it was an omen of bad things to come. Three months later, I was Dx'd with b.c. and had the lumpectomy of an egg-sized grown plus 2 nodes. RODENTIAL PALACE All the rats inside me tunnel and collect stuff to pack. Bits of my liver for a pate, lung tissue to dab the corners of their b.b. eyes, and for curing what ails them - cartilage from my hip. Do they tire? No, these rats are frisky, having feasted on my pep. I’m the one too weak to bait a trap with strychnine-laced Velveeta. Sometimes I hear the rats bed down needle-nosing through the debris stashed in my stomach cavity. Trash where there once were hanging gardens of wisteria. Each female rat gives birth, and so litters of rodents are trained by their folks to tunnel, and I fear I’m turning from Kabul into the country of Afghanistan. YOU LOOK GOOD Nobody says you look good to Estelle or Babette - those goddesses of West L.A. whose auras salsa as they walk. Nor Miriam, whose cheeks glow in her sleep or Blanche who flips her scarf over a sassy shoulder or Ricky and Lois - round faces in a Valentine. But friends say you look good to me as if I don’t know I look like I’ve been shoving a steamer trunk up an ocean liner’s ramp and my complexion is sub-white from the skimmed soup of my blood and I’m thinner than a runway model. They tilt their heads and say you look good emphasizing each cylinder syllable as if saying you look good will flex my spirit’s biceps, as if saying you look good will keep my brain snapping as if saying it lassos me to them as if saying it keeps whatever I have inside the borders of me and away from them as if they don’t know what else to say when we all know I look and feel like hell and saying you look good will make it so. Anne Silver www.annesilver.com Dx 2004 mets to liver, lung, dem bones, Anne Silver passed away at 3am Oct 20th. She was overwhelmed by metastatic breast cancer, and succumbed after a valiant fight, although not without unexpected suddenness. you all know the beauty of her soul, the light of her smile, the boundless depth of her imagery and imagination, her scintillating wit. She revealed her poetic nature strictly on the written page, which is why all who read her poetry after first knowing her for awhile, were stunned by the images that played in her head. She was absolutely real, and down to earth, and her personality, while loving and kind, was in no way artsy, ethereal, in short, what might be thought of as the negative sense of the word "poetic" (no offense to the poets addressed in this e-mail, but, since you knew her, you know what I'm talking about.), I must add, on a personal note, that she was the love of my life, and we were planning to be married in December or shortly thereafter. Anne was 54, I am 62, and we had only been together since January, but I wouldn't trade one second of loving her, and her loving me, for all the tea in China (I did say I'm no poet, didn't I?) A special thanks to all those of you with whom Anne communicated in bcmets. Your togetherness sustained her, as did her ability to share her positive spirit with those of you who needed it. God bless you all in your struggles with this horrible disease. I close with a poem by Anne, which she described at a reading she gave in July as her favorite poem she had ever written. Nothing could more express her beauty than her own words, which, as always, dwarf any meager expressions of my own. Joel Warren Limitless Could I love the starlit sky if I did not also love the sun the reflection of the meadow in a horse's eye the curve of my nose even the sound of my own voice though I have spoken with the spite of Esau and wept because I had asked for too much? How can I not love and thank the Host of this entire universe? I can't imagine not begging to stay no matter when it's my time, but when I must, I want to leave blowing kisses off my fingertips and using my last breath to say I have loved it all. Anne Silver ####################################################################

Menya Wolfe
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After a heroic, almost-five-year struggle with a rare breast cancer that spread to the brain and involved numerous surgeries, chemotherapies and other treatments, Menya Ruth Wolfe died in the Palliative Care Unit at St. Michael's Hospital on February 13, 2001 at the age of 36, surrounded by love. Pete Bevin shared the emotional roller coaster ride of her last years. Menya began to tell her own story on her web site www.menyawolfe.com. As well, she and her husband established a help page for other women living with inflammatory breast cancer: www.ibcsupport.org. "Pete also established BCMets.org" There are many women and men grateful to him, including myself, Susan A.

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Alley's Spirit has gone on to meet with the others we have lost... It's just like her to make sure she wouldn't be here for the Pink Month of Oct. She would have ended up on TV mooning some ignorant news reporter. I know that she probably cursed up a storm when the grim reaper arrived. I hear he had to have backup. He came by many times to get her but she wouldn't budge. She dared him. She even flicked a cigarette butt in his face. So he came back with help and I still can't believe she went, but I really can't blame her one damn bit. The Grim Reaper tricked her  when he pulled up in an ice cream truck.... Susan Andrews

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If you want to Donate in Alley's name, as requested by her husband, please click here. The money collected in Alley's name will be donated to those who need help with utilities or misc bills.
***If you happen to be one of those people in need. Please Fax or Mail a copy of your unpaid, overdue bill. Fax 828-859-9519. Mailing info listed on BC Crisis Fund Donation Page. Also, if we are not familiar with you on the list, we'll need copy of BC DX also.

From Karen L.

Michael told me to tell everyone that she went out fighting, kicking and trying to talk. He said she never wanted anyone to say "she lost her battle", because Alley believed that any battle has a chance of victory and with mets, it is a battle that cannot be won" Michael also said that all of us endure this disease until we cannot endure anymore. He said that if anyone would like to make any donation in Alley's name to donate to the BC Mets Crisi Fund. Michael is especially concerned for those on our list that need the basics of utilities, food and medicine. He said that Alley was blessed with not worrying about any of those things, but wants others to not have to do without.

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...a dream Alley had:
<<I had the most wonderful dream. I was cured. I was running and realized I was running and turned to Michael and asked him if he noticed and he said he was waiting for me to notice. (Told you it was a dream. That's why it's stupid.)

Then, I had a cig! yes! I realized I couldn't smoke if I wanted to stay healthy so I told Michael I'd only smoke today and then I'd have to quit the next day. Michael just about fell on the floor laughing. He said I sure did want a cig bad to dream that one!>>

Alley is cured and running now and when she stops to rest she'll light up without worry. We'll be having that face-to-face we talked about, sharing a cup and a smoke......

pattyzzzzzzzzzzzzzzzzzzz (for you, {{{{{Alley Patricia}}}}}

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from Alley about Karen L.:

There are so many bad things happening in this area. Today, a beautiful woman walked into my life and made the day so special and I forgot about the bad things while talking with her.

Karen thinks I write funny things and I mentioned to her that I
sometimes go overboard and hope I haven't hurt anyone's feelings with my writings. It isn't my intention to ever hurt someone. I am on steroids daily and I type just as I talk so please, if I hurt you, forgive me, but do let me know in private so I can tell you I'm sorry. We get to know one another through emails. Meeting an online friend, LIVE, in person, is just wonderful. Real hugs are fantastic. It all began right here. It's so great to have this list.

******Misc Things Alley Posted to the List********

***** I'm Alley and cancer doesn't define me.

******I'm more of a gardenia shrub...short and fat, but smelling good after a soak in the tub.

***I thank all of you who gave me support. Strangers wrote to me. There are people lurking on this list who jump right in with support when it is needed in addition to those we all recognize immediately when they write. There is no better support than this list and we don't have to get dressed or brush our teeth.

Love to all of you, Alley

***I saw it about to come on. Grabbed my oxygen and cigs and went outside. First time outside in 11 days. Forget the guilt trip. It's also said that being overweight contributes to BC....never mind mets. Well, I was told this BC actually had been in me for 10 years. I subtracted 10 years and found that was when I was a size 6, dancing all the time, swimming, very healthy...and I still got BC. I'm just going to ignore all of these latest discoveries. The one about less fat has been on TV several times.

WE ALREADY have mets. Eat and enjoy your ice cream and don't feel guilty or think you brought mets on yourself.  My onc told me to do what I want and not to worry about what will happen 20 years down the road. Yeah, he said 20 years and I could have kissed and hugged him for that but I knew he didn't really mean 20 years. He was just trying to tell me to enjoy life.

Alley

" Children see things simply. They know of cancer but they don't understand cancer. When she asked me if I'm going to die, I told her - not now. That was all she needed to know.

We never know if a treatment will halt the progression of cancer but we keep trying another treatment and hoping that will work. Some get a bit more time and others get a lot more time. Having a treatment work for six months is not bad. You might get lots more time with your next treatment.

What do you call it when you're told you will die but you're already terminal? The end of terminal? Terminal terminal? Terminal to the ninth degree?


I don't like living with this and don't consider this quality of life. I was okay w/the w/c and sitting all day at the desk but I'm not okay w/waking up with these choking moments. It's very scary and hurts a lot. I find myself bubbling w/snot. I am really enough to gag a maggot. I gasp for air and grab the face mask for more oxygen. I can't seem to get enough air in when these choking, coughing spasms occur.

I so appreciate the many private messages I've received in addition to the public messages. So many have made suggestions to me to prolong my life. I don't want to do that. My onc said anymore chemo will kill me. I believe him. Dr Vogel's nurse told my husband that I am too far gone to be helped. Vogel looked at my onc's notes and my tests and films. There's nothing left for me. I'm either going to die from a major heart problem or cancer. I hope it's the one that hurts the less. I'm not afraid to die. I used to be. Not now.

 Everyone is so shocked I'm not dead. It's so unreal
hearing people talk about me and how I was expected to die. Nice to still be here. Not nice to deal with CHF. Nice to know there's no one in my life that is pissed at me.

I dismissed one nurse from my care. She wore a skirt two sizes too small that came up to her crotch when she sat and she sat w/her legs open while here. She asked if I needed my b/p checked and I replied that I guessed not. I mean, if she's going to ask if I want it, do I need it? Then, she turned to face my husband and asked what she could do for him. I closed my
eyes and pretended I was asleep while she talked to Michael and I knew she was a vulture waiting for the carcass to fully croak so she could attack the widower. She said she should go but she stayed. Later, she again mentioned she really should go but continued to stay. Michael said she had a pig face. The ho is no longer on the team and shant be returning to my address.  wait 'til I'm gone before picking through with
what's left.

I don't know when I'll feel like answering every email I've received. I do appreciate all of you that have written and feel so fortunate to have so many friends. Love you all, Alley

 I really like being with hospice. I only have the nurse coming once each week because we just don't need her right now. I associated hospice with death because so many on the list have gone to hospice and died so quickly. It isn't hospice. It's just that some went to hospice at the very end. That could have happened with me, too, and then all of you would have thought I waited too long. What happened with me is that I just took a
totally unexpected turn for worse. It wasn't a gradual thing. If I was that near death, I certainly didn't know.

We have no idea of how much time I have before my departure but at this moment, we don't think it is anytime soon. I could have a heart attack and go at any time but so could any of you that aren't with hospice. Everyone says the cancer will not kill me. It will be a pulmonary event, most likely. I am no longer having the coughing spasms and gasping for air as long as I take my oxydose. That's very good. That scared the pee out of me and I didn't want to be here but I don't feel that way now. I'm quite content. I do have a DNR because I don't want my ribs cracked while someone tries to save me and end up on a respirator for the rest of my life.

Thanks to you who have prayed for me. I think I've gotten a miracle just because I'm still here, out of bed, bathing myself, using the real toilet, eating, walking and a lot of things I was told wouldn't happen.

Love to all of you,
Alley

I had never been able to paint a mental picture of cancer until recently. I was in the chemo room and the lady said she had Pac Man gobble up the cells.

 I mostly thank God for what I've been given in my lifetime. This Sat., I'm going to beg for a cure and if we can't have that, then NED for many, many, many years - long enough for me to see
gr-gr-grandbabies. I had always planned to live to be 100 years and I'm not going to change my plans. I'll leave the change of plans in His hands. Heaven is to be wonderful but I don't see any of us in a hurry to get there. I'm willing to wait.

 

 

(The Following is some edited posts, written beautifully by a woman who thought she had lost the gift of words. She just lost her gift of living a long healthy life like everyone deserves)

I was diagnosed with breast cancer in 2001--at 25 years old. Went through 6 months of adjuvant chemo and was clear for a year after that before they found metastatic breast cancer in my liver. Diagnosed with liver mets October 2003
***************************************************
I have slowly fallen into the trap of allowing myself to be defined by the cancer and treatment thereof. It didn't happen right away. I'm 29 years old and have been going in for weekly chemo for almost 2 years (as of this September--I pray I make it past 30).

I began to think of all the activities that have dropped from my life as a result of the cancer. I rarely get out. I am easily winded and very weak. I don't visit with friends. I try to make it in to work, but miss several days most weeks. When I do make it in, I usually feel pretty bad. I've even stopped writing for the most part--and I've always written. My biggest dream was one day to be able to make a living off of my writing, either fiction or travel essays (I also dreamed of traveling to out of the way places like the Namib desert in Africa). I've read that chemo brain affects the portion of the mind that controls spatial perception and verbal abilities. Words. Those things I used to thrive on, those things I thought ran through my veins--I've lost a lot of them. I often can't recall a word, a word I should know, and it is sheer frustration.

When I sit down to write an essay, cancer/chemo is all that flows out of me--because my life is defined/controlled by the treatments, the cancer, the way it makes me feel and what I try to do to alleviate the pain, feel better, make it to the next day. And I got tired of that, so I stopped writing essays.

I think education is important, and so many people are absolutely ignorant about metastatic cancer, stage 4, and what it entails. I was--before it hit me. People still think the chemo will get it and life will go on--they do not understand the concept of an illness that you must combat for the rest of your life--which is usually greatly shortened. A chronic, incurable disease.
We don't know the future and anything can happen at any time, but living with metastatic cancer poses such unique difficulties--piles an insane amount of stress on one's body, spirit, emotions--how do people who have lived longer-term with this disease manage it?

After two years I am beat! My body feels wrecked, my emotions are a mess--the cancer continues to grow in spite of the treatments that I cycle through way too quickly.

Some days I wonder if I'll make it to September. When things go downhill--I know it will happen quickly.


And so, like many of you, I live with death peering in at me. At night I can almost see him there, sitting on the other side of a thin pane of glass--separated by time, but how much?

*******************************************************************

My cancer is so aggressive I am very frightened
that I may only have a few months left to live.

Each new chemo I do lasts about two months (as far as being effective) before the liver mets progresses again. I just wonder how long do I have left if that proves to be the rule for me and my cancer?

I think that's the worst part of starting a new chemo...the unknown quality. After a month or so on one chemo you get lulled into this sense of familiarity--which breeds a weird sort of comfort rather than contempt.

I'm just really tired. When does it stop?

Kristi in Little Rock

**************************************************************************

Kristi Michelle Buss
5/16/1976 - 9/1/2005


Kristi Michelle Buss, 29, of Little Rock, Arkansas went home to be with the Lord in the early moments of September 1. She battled cancer with matchless grace and purpose, always mindful of others’ needs and embracing every opportunity to witness for her Lord and Savior. Disease took its toll on her physical body in this life, but the blessings yielded during her many years of struggle touched countless lives for time and eternity.

Heaven changed for the better on September 1, 2005.

Kristi often cited the following quote from D. L. Moody:

“Soon you will read in the newspaper that I am dead. Don’t believe it for a moment. I will be more alive than ever before.”

***************************************************

anne.jpg

It is extremely irritating to be "blamed" for causing your own cancer by friends and the media. Friends have an excuse -- it makes them feel less vulnerable if they think there is a magic formula for keeping cancer away. The media has no such excuse. The continual stories on how curable breast cancer is, the emphasis on risk factors, etc., run the risk of making people like me less aware of the danger rather than more aware. In my case, I rarely read past the risk factors because I thought I was pretty safe. I was (emphasis on WAS!) slender, ate a low fat diet by choice, didn't smoke or drink, started having kids young and breastfed them for two years each, had absolutely no family history of any cancers -- yet here I am. As one of my docs said, "Birds fly overhead all the time, and sometimes the poop falls on you."

Anne

*****From: Anne Henderson Date: Sun Mar 20 2005

 the rainbow bridge poem. It's not really a poem, and there are several versions out there, but this is the most common one:

Just this side of heaven is a place called Rainbow Bridge.

When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable. All the animals who had been ill and old are restored to health and vigor. Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind. They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster. You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together....

This is the Adorable Anne H.
yorkies.jpg
She Says These Yorkies are Her Angels Watching Over Her

(From a Friend of Anne's)

Anne, passed away last night. Several months ago she asked me to let all her friends and contacts know when this happens. She was a wonderful person and I am honored to have known and loved this wonderful woman and was with her and her family when she passed away. If anyone has anything they would like to share , please email me at BECCASMERE@HOTMAIL.COM

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Name: Anne Henderson  Virginia suburbs of DC

Dx Stage 2B Feb. 2002. My first sign of a problem was redness and swelling of my right breast, but the final dx was not IBC.
Tumor size: 3x1.5x2 cm, multifocal and extensive DCIS, comedo type with lobular extension, multifocal IDC, high grade. Vascular/lymphatic invasion with tumor in dermis of nipple, 14/17 axiallary nodes positive, ER+, PR+, Her2-. Treatment: right mastectomy, CAF, radiation, arimidex

Dx Stage IV: July 2004. My opposite arm became quite swollen. My mammo was clear. No rise in tumor markers. PET and bone scans showed mets to lymph nodes and a gazillion places in bones including spine, hips, ribs and pelvis. Biopsy showed axillary lymph node tumor was ER-, PR-, HER2-.

Treatment: Armidex stopped, weekly carboplatinum/taxol for six months. Now on four week chemo break, to be followed by Xeloda.

How am I doing now?: Excellent results from the carbo/taxol. I'm NED!

I tire easily - my blood counts are still a bit low. Neuropathy in fingers and feet has lessened some but still bothersome. Anxiously awaiting the return of my eyelashes -- I think I see some today! I HATE not having eyelashes. I lost every hair on my head and body during CAF and carbo/taxol, but nothing bothers me like having no eyelashes. My arm swelling came down about 50% with physical therapy and compression
treatments. I now wrap it at night and wear compression sleeve and glove in day. I've never had much pain from the bone mets. What do I think causes cancer?: I suspect a virus is at the base of it, compounded by hormones, heredity, and environmental factors. What do I do to improve my life?: I indulge myself more than I used to. I eat chocolate, buy hard back books, spend lots of time on genealogy research. I try not to waste time on things that really don't matter -- like housework. :-) I spend as much time and energy as I can on my kids and pets. I try to consciously savor every moment.

*************************************************************************

I remember my then sixteen-year-old daughter's reaction back in 2002 when I was first diagnosed with breast cancer. She cried for about an hour, then came into my bedroom with her usual sunny smile breaking through her tears. She said to me: "We're not going to let this knock us down. We're going to
see this as a fashion challenge!" That was the last thing I was thinking of at the time, but it was so Katie that it cheered me up. She went on to assure me she knew how to make a fake boob out of pantyhose and birdseed. (I should mention she's a theatre person.) Anyway, she took over the beauty aspect of my illness, and it made both of us feel a lot better.

Anne
-------
"I'm here for the party
And I ain't leavin' til they throw me out!"

 

On Tuesday, August 30, 2005, ANNE HENDERSON died after a courageous battle with breast cancer. Born in Vancouver, British Columbia, Canada . She was awarded her A.A.S. in Early Childhood Education at Northern Virginia Community College and a B.A. in Early Childhood Education at Antioch University. Anne was the loving wife of David Henderson, mother of Jesse, Abby and Katie Henderson. Anne's love and devotion to her family was always her first priority even during her struggle with her illness. Anne served as the co-coordinator of the Religious Education Committee, Langley Hill Friends Meeting (Quakers). She was also very involved with animal rescue, serving as Virginia State Director, Yorkshire Terrier National Rescue, continuing to rescue Yorkies even as her illness progressed. Shortly before her death, Anne was chosen to receive their "Rescuer of the Year" award. As "Maxi", hundreds of internet friends and forums knew Anne as a kind and wonderful person. Many have e-mailed their condolences to the family and have expressed their love for Anne's kindness, insight, love and humor. She faced her illness with courage and grace.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

bethtamy.jpg

From Beth:  the very last photos I have of Tammy (one with me and one with her middle son, Cory ).  I didn't take pictures when she was in the hospital even though she looked lovely with her pink pjs and polished nails
Tammy blessed my life by sharing herself with me.  I will always be thankful.
 
Susan -
You bless my life too with all the ways you reach out to us and help!  I love the memorial page.  I'd like to see it more to the top of the side bar list.  Just a suggestion so I can find it easier.  Also - perhaps we should all write something so if the time comes, you'll have our personal message to post!  We could pick out our own pictures too. 
 
(If you want to do this, I can store those on my computer and kept Top Secret until time for it to be released) email it to me : BCStage4@yahoo.com
 

"Read John 14:27-29.."

That night I paged through the Bible and found the verses: "I am leaving you with a gift: peace of mind and heart. And the peace I give isn't fragile like the peace the world gives. So don't be troubled or afraid. Remember what I told you: I am going away, but I will come back to you again. If you really love me, you will be very happy for me, for now I can go to the Father, who is greater than I am. I have told you these things before they happen so that when they do, you will believe in me." - Beth

Beth Sullivan, you too are so much a blessing to us all that are lucky enough to know you !!! I'm sure you brought Tammy so much comfort being there with her. Thank you for just being you...- Susan A.

tamycory.jpg

Thu Jan 06 2005 - 00:52:05 EST
(part of a Post from Tammy Young)
 My spirits are where they need to be, which is half the battle, and my family is thriving. It has been some of the roughest months since I began this mets journey coming up to 5 years ago. I was very confused as to my mental/emotional and physical state. I think the doctors really took away my hope by setting up the palliative care team and scared me into thinking I was dying very soon....sooner than I had thought. I didn't know what was physical and what was emotional for awhile there and that black hole was getting deeper and deeper every day. Depression quickly took hold and I think that added to my already fatigued body. Thankfully God is always faithful to his word and has carried me through yet another storm. I am now concentrating on the new windows opening ahead and not worrying about the closed doors I'm leaving behind. I feel like I'm emerging out of a caccoon (sp?)...not into a beautiful monarch butterfly by any means, more like the lovely yellow ones you see in groups at a beach, staying close to the ground. My New Years resolution, as such, is to write in my boys journals more often. I want to fill as many pages as possible with advice, love and memories and also stuff that only I would know and could answer. That being said it means stepping back from the list for the time being, while my awake time is so limited. When you are working with limited hours I'm finding I have to prioritize, although my heart still wants to do it ALL!!! There are so many new members and such encouragement and support that I feel okay stepping back, gosh I'd say half the people don't even know me. Rhonda, and all those who have been thinking and praying for me I thank you from the bottom of my heart. It is knowing that which has pulled me through a very lonely, frightening time. I always said I wasn't afraid of dying, just the process. I was wrong, I don't want to leave this world yet, and everyone I love in it and I'm still frightened of the process....despite not knowing it.   If you made it this far, God Bless you and best wishes for a healthy 2005 for you and your loved ones. Thank you all for always being a cyber call away. I have made so many wonderful friendships over the years on this list and I'm forever grateful to Pete and Menya for starting it and maintaining it still. Good Night!
Keeping the Faith
Tammy in Ajax, Ontario, Canada
xox
_____________________________________________________

*******************************************************************************
 
Lori will make such a Sweet Sweet Angel Now.....

Phil and Lori from Canada
1dde.jpg
Look at all those Sweet Children !!!!

(this is Edited )
 
With her family at her side, Lori Anne Sargeant-Radomski passed away peacefully on August 22, 2005 after a long and courageous battle with cancer. Lori wanted desperately to live and care for her children and she fought hard and endured much pain and discomfort for almost three years.   She had a sweet and easygoing nature and, as the youngest, her parents and older siblings doted on her. She was our"Little Lollipops" and we adored her.   She especially remembered family camping trips and the year her family spent in Australia as happy times.  She married Phil in July 1988 and later moved to Regina. 
 The greatest joy in Lori's life was in her role as a mother. She loved her five beautiful children absolutely and she worked long and hard both at work and at home to provide and care for them. She was extremely proud of each of them and loved to share stories with family and friends of their accomplishments at school, at dance, on the soccer field and in all their many activities. She tried to attend all the school activities, dance recitals and sporting events that she could as she loved watching anything her children were involved in. Even as her illness progressed, she still wanted them close and loved having them with her as she read with them, did their hair or just cuddled. Lori had an amazing support network throughout her illness and her family would like to express their gratitude to the wonderful people of St. Martin's parish, St.Matthew's school, Beta Sigma Phi sorority,colleagues at the Wascana Rehab Centre, DES and RQHR, neighbours and numerous friends for all the meals, housework, child care, driving and especially the visits over these last three years. Lori really loved the visits when people would stay awhile and chat with her. She valued all your friendships very much. As one visitor told us, "Lori was very popular."  Lori had a very deep faith and belief in God. 
 
 In lieu of flowers, friends may make a donation to a trust fund for the children’s activities. Send donations to: Noble, Johnston and Associates, 1143 Lakewood Court N.,
Regina, S4X 3S3; Att’n Bill Johnston.

"We love you, we love you, we love you so, we'll never let you go."
Lori, you will always be "our girl Lollipops", mother, wife, daughter,
sister, friend.

phil s-r


 

*************************************************************************
We just wanted to let all the BC mets crew know, mom (Lynn) passed away last night around midnight (we brought hospice in last week) and  she is now at peace and pain free for the first time in many years and will not have to fight any longer. Mom loved corresponding with you all and got so much great information that empowered her to fight her cancer for over 18 years. I also was a subscriber but just always read the helpful posts that everyone would add. Thanks so much for all the love and support you all gave mom over the years and keep up the great information and tremendous fight :)
Much love and hugs, 
Rebecca Lourenco
******************************************************************************

This is a tough one. Survivor? Maybe after enduring the latest ordeal with treatment, pain, I might feel like a survivor. Warrior - while going through the tough fight I suppose I could feel like the warrior. Victim? Don't know about that one - we're all victims of something or another, we all have our battles. All the other stuff, it's tough. I strive most to just feel like "Debbie". That person that my friends, family, coworkers, have defined me as over the years, ever changing even through cancer. I want to be that person that they respond to the same, no matter what. My friends tell me it's my "smile" they define me with most. Always telling me how great it is to see my "smile". So, I just want to be that person who can "smile" and be "Debbie". No matter what gets thrown my way!

Thanks - Debbie Wells (passed away 8-07)

Date: Sat Aug 20 2005 - 22:13:56 EDT

The following is from Tammy Young's family:

"Since Tammy's passing yesterday, we've been reading your posts and would like you to know we find them comforting...weknow your support group was very important to her and she gave and received much encouragment by participating." We'd like to tell you about a memorial fund that has been set up by the Bevy of Hope Breast Cancer Foundation in Tammy's name....imagine that, Tammy has her own fund! Funds received will be used to help those unable
to afford their meds, wigs and other things that are needed to fight this dreaded disease. We know this cause was very close to Tammy's heart and her family pledges to "Keep the Faith"
Donations can be made by cheque to the following:
Bevy of Hope Breast Cancer Foundation In memory of Tammy Young 1891 Appleview Road Pickering, Ontario, Canada L1V 1T7
Because this was just set up today, an account number specifically for the "Tammy Young Fund" is not available yet. We will forward this we have it, but in the meantime if you add "In Memory of Tammy Young" it will be set aside for that account.
PS Private emails to Tammy's family can be sent to haughton@sympatico.ca  although we will still be reading the online posts.
THANKS EVERYONE!

This is a tough one. Survivor? Maybe after enduring the latest ordeal with treatment, pain, I might feel like a survivor. Warrior - while going through the tough fight I suppose I could feel like the warrior. Victim? Don't know about that one - we're all victims of something or another, we all have our battles. All the other stuff, it's tough. I strive most to just feel like "Debbie". That person that my friends, family, coworkers, have defined me as over the years, ever changing even through cancer. I want to be that person that they respond to the same,
no matter what. My friends tell me it's my "smile" they define me with most. Always telling me how great it is to see my "smile". So, I just want to be that person who can "smile" and be "Debbie". No matter what gets thrown my way!

Thanks - Debbie Wells (passed away 8-07)

It saddens me greatly to inform you of the passing of Deborah Marie Wells on August 7, 2005.

Debbie was admitted to the hospital on August 1, ostensibly to regain strength before starting her next round of chemo-therapy. She was in great pain and having difficulties keeping food down. Debbie's health worsened immediately and within just a few days it became clear that the cancer had gotten the better of her and that she would not be coming home. Her family and friends flocked to her side and the hospital nurses were so loving and caring. Debbie was never alone up to the end. They brought a bed in for me and I spent her final 3 days
beside her day and night. Our two sons were also with us when she passed. It was the saddest moment of my life - I lost the love of my
life and my best friend.

A great many of Debbie's friends and family turned out for her wake and funeral, a testament to how many people she had touched in her brief life and how much we all loved her. She will be greatly missed. In June, Debbie captained a team called the Busy Bees in a Relay for Life event in our home town. Deborah means busy bee in Hebrew and the bee became her personal symbol many years ago. On the second day of
the relay Debbie did a video interview with a reporter and I just saw the final cut of the interview yesterday. She was in a wheel chair having just taken her second Taxol treatment the day before. I know that she was exhausted and in pain both from the cancer in her bones and from the neuropathy caused by the Taxol, but you'd never know it from the interview. She seemed happy and so full of life and optimism as she described her 11 year fight with breast cancer. I was so very
proud of her.

Many of you on this support group know Debbie and have exchanged mail with her and you need to know how important you all were to her. She found great comfort in sharing both her and your stories. Debbie's legacy is her family. Her great cause was the cure of cancer and we will continue that fight in her name. Please join us where ever and how ever you can. This disease must not be allowed to continue
ravaging peoples lives.

Date: Wed Dec 31 2003 - 20:31:24 EST

After originally being diagnosed with breast cancer 5/94 (er/pr+ small tumor, 7 out of 19 positive lymph nodes) I thought I was doing pretty good!!!! Had 4 treatments Adriamycin, 3 treatments CMF (was scheduled for 8 but had 2 bad blood clot incidences so doc stopped the CMF), had radiation, and had ovaries removed rather than go on Tamoxifen (because of blood clot risks). Have kept up with all my docs recommendations on testing, etc. But, about 4 years ago my
onco doc moved out of state so my primary doc said she'd keep close watch on me and that I'd be fine. Had a funny mammo in May of this year so went back for a redo in November. Still had a funny spot on the right breast (where
original tumor was) so went in for a breast MRI. In the meantime, about the same week I was scheduled for the mammo in November I started to develop some pain
about where my bra touches me on the right side (front and back). I actually cursed myself thinking I had gained too much weight and that my bra was getting too tight!!! So, with the tight bra causing me to feel a burning sensation as well and also an itchiness I saw a doc for that. This doc thought shingles.
The doc did a spinal x-ray - said I had arthritis but couldn't see anything else and since I showed no rash he recommended I see another doc. Went a few days later to see another doc - he also thought shingles, still saw no rash but put me on an antihistamine for the itchiness (I complained more about the
pain than the itching!!!!!). After seeing the second doc I had to go see my surgeon for a follow-up after my breast MRI. She gave me the all clear on the mammo and breast MRI but I complained to her about my pain just the same and she
quickly ordered a chest x-ray, abdominal and pelvic CT and bone scan. You got it!!!!!!! The bone scan showed large hot spots on the ribs right side and several more hot spots up and down the spine from neck to tailbone. The worst
being at the ribs. Chest x-ray was fine, CT scan seemed ok too. I was rushed in to meet a new onco doc right away (next day). He was a fabulous guy - had not seen any of my tests though just got a phone report from my surgeon but
just the same he immediately put me on vioxx for the pain and femara for the cancer. He also set me up to meet a radiologist too that very same day - also a
great guy. The onco doc drew lots of blood that day and after leaving his office I got a call to have an MRI done too. Yesterday I had a brain, thoracic
and lumbar MRI (ugh - awful test). So, I await my next visit to the onco doc on 1/9. I'm hoping for the best in the bloods and MRI. I'm a bit apprehensive about knowing that I have bone mets that are so plentiful but am optimistic if that's all there is. I guess since the CT scan and chest x-ray seemed ok
that my fear is brain or bone marrow mets. I've talked to a few people that have encouraged me not to get too down about the bone mets - they've tried to encourage me that if it's only in the bones now it's not all gloom and doom. When I was told my cancer had spread my fears were horrible but those people
that I've talked to have encouraged me to believe I still have years ahead of me to fight off this disease. I sure hope that's the case - I have a young 2 year-old grandson that will need his Grandma there to help him with his homework
when he gets to school (I'm a school teacher). Debbie Wells

Roll Call

Date: Mon Apr 04 2005 - 11:39:46 EDT

Hi all,

Debbie Wells here - Diagnosed May 1994 2cm lump right breast - 7 out or 19 nodes positive - did 4 cycles adriamycin, 3 CMF (until I had complications with blood clots so they stopped). Had radiation for the usual course. Had oophrectomy.

December 2003 - Mets diagnosed, spine, ribs. Femara and Aredia.

January 2005 - tumor markers rising - February 2005 - tumor markers double - changed end of February 2005 to Aromasin - CAT Scan showed possible spleen mets? March 2005 - bone scan and MRI - showed extensive spread to bones - skull, thoracic spine, ribs, lumbar spine. Am hoping
for the Aromasin to kick in soon. Also, since last Wednesday have had swollen lymph node in neck - possible mets? Will see onc doc next week. Possible cause of cancer - don't know. No family history so maybe
environmental?

 

karonh.jpg

The Good Bye Party
 
From: Karon Haller
Date: Wed Jan 19 2005 - 21:58:02 EST

Barbara wrote:
> Karon, I want to come to YOUR party.<<<<<<

Okay, Barbara, but be prepared because I plan to have a wake with an open casket. There will be a spring-loaded panel underneath my back in the coffin with a pressure pedal under the rug in front of the casket. So when someone steps up to the casket, I'll sit up and grin. That ought to get the party going.
Karon

 

From: Martin W.Haller Date: Wed Aug 03 2005 

I am not going to interject a humorous note with the sad news of the passing of my wife, Karon. Her battle with breast cancer was a long one with numerous ups and downs. In the end the cancer infiltrated her liver resulting in liver failure.
She gave every clinical trial a shot. Her last chemo was three weeks ago, Doxal. After that treatment she decided no more chemo and opted for quality of life. She knew then that the end was near.
Her death was peaceful and without struggle. I am grateful to have fullfilled the role of care giver and be able to see her out.
Karon asked not to mourned but to be remembered how she lived life. I can assure you she touched everyone who came in contact with her.
In parting I can only say keep up the fight and never lose hope.


Regards, Martin W. Haller

(This is from the Last Encouraging Roll Call on the ClubMets List, I do these roll calls each April and Oct and was really crossing my fingers that she'd make it to Oct with Great News...
 
Date:         Mon, 4 Oct 2004 16:58:14 -0400
From:         Karon Haller
Subject:      Roll Call


Karon with an "o"


(still on the Delaware shore)


Primary Diagnosis: 1997, stage I, negative nodes, ha ha

Mets Diagnosis: 2001, axilla, eight nodes positive
More Mets: 2003, skin, liver, eye
Meds Last Six Months: Taxol (failed at four months), Xeloda since May 2004
How Am I Doing? CT scan on September 9th showed no cancer, but Dr. Grim, true to his nature, won't say remission.
How Has my Life Improved? Since I thought I would be dead by now, I must say life has improved substantially.
Cause of My Cancer: Is this a trick question?



Holding her book, A Taste of Change
asissons.jpg

Dear friends,

 I regret that I must inform you that my lovely, loving Angel is now residing with our Father in one of His many mansions as of August 5, 2005. Angela's heart went out to all on these BC lists in ways only I could see. The Lists became a significant force in her life as well as mine. All of you provided support in ways beyond that which was simply written. You truly are a Sisterhood of many faiths come together to learn about, to cope with, to support each others confrontation with this devilish disease. I, too, have learned and identified with your
struggles as I was permitted to read you forwards. I have been and am affected emotionally, yet strengthened by your resolve to defeat this deadly disease. Many will not see that day, but your legacy, like my Umge's, will live on. I am sure. I must close now, but please know that I shall not give up the fight. And for all of your significant other caregivers...please have them know that I salute them and beg them to carry on.
Love to you all.
Wiley
 
(Angela is the one who came up with the "Dying for a Cure", when she sent me a Copy of her Book, A Taste of Change, there was a special note inside: 12/14/04 Dear Susan ThankYou for all you're doing. Profound gratitude to you for the website and the pink ribbon magnets with black bars. Love Angela)-This is Priceless to  me, Susan
 
The Post I sent to BCMETS.ORG:

 I just got the note in my email, it's 4:50pm here and my heart is heavy  with all the recent losses. Esspecially this one. Angela was a very kind and giving lady who was one to help out the BC Crisis fund too. She sent me a book she had written back in 2001, A Taste of Change. In the very back there is a piece that she requested for her funeral. So, because we won't be there, I've written some of it in here for you to read.
 "We're Dying for a Cure"-Angela Margaret Sissons Ph.D.

But until a cure is found for this disease, we will not be the first
relatives to be separated thus. I have been truly blessed in my life,in my family, friends, and in my work. Because there's been so many years since my illness and death, there has been ample time for me to learn, to grow, to replenish, to atone, and to say what I normally would not. Even in the world after this world, we will be together. Two magical beings of light and air, dancing through Heaven, shaking the stars free from the night sky. Even in the life beyond this life, where a billion souls free-fall through the universe...I will come and I will find you, wherever you are. My love forever. Goodbye (taped in 1998: to be aired at my funeral)
***Her book was made possible by the Making Memories BC Foundation and independent donations. If you would like to make a donation in her honor, Angela Sissons, please contact MakingMemories.org or call 503-252-3955

                           

Judi (1966-2005)

Dear BCMets group:

This group has been instrumental to me since my sister
Judi was diagnosed 4 years ago at Stage IV, and I have
learned so much from you all and have gained strength
from each and every one of you. And so it is with
great sadness that I must tell you that my sister
Judi, 38 with 3 kids (11, 9 and 4) passed away Sunday
night. She had been at home in a hospital bed since
July 1 due to rapidly progressing brain and
leptomeningeal mets, and over the weeks had lost her
sight and much of her hearing, but she never lost her
beautiful personality.

Judi received visitors straight up until Saturday, and
each and every time she welcomed them and thanked them
"so much" for coming, and she apologized that she had
lost her sight and could not see them and that she
would probably not be great company. Over the weeks,
we had also been taking her by ambulance to have fluid
drained through her ommaya resevoir to relieve
pressure on her brain, and she always apologized to
the EMTs who had to carry her for being so heavy,
because she had gained weight from the decadron. That
was the type of person she was, never once thinking of
herself, always, always thinking of others.

She was not ready to go, and we were not ready to let
her go, but it was difficult to watch her suffer over
the last 4 years, and particularly over the last 4
weeks. As she passed, she was surrounded by family who
loved her more than words could ever say.

The world has lost a true ambassador of love and
goodness, and I have lost my only sister and the
sweetest person in my life for 36 years.

I thank you all again for letting me share these last
4 years with you, and I wish for all of you the very
best.

Doug,
Brother to Judi (1966-2005)

Sat Jun 03 2005 We All Lost a Beautiful Friend
juliet.jpg
Juliet Jones

From the BCMETS.org Online Fund, a $500.00 Donation was sent in Juliet's name to:
this was her wish...

(Wed Apr 13 2005, to an online support group friend)

Yes, I am with you with this one...I was diagnosed at 23 weeks pregnant, had chemo, then c-section, then mastectomy and the more chemo and then radiation. I delivered a beautiful, healthy baby girl (with more hair than me) at 36 weeks. She is now a bubbly, vivacious 2 year old. I was initially diagnosed with inflammatory breast cancer (always Stage IIIb at diagnosis) but I now have wide spread mets since last July. I would gladly talk to you over the phone if you would like. Email me privately for contact details. If you prefer something a little less personal, there is an excellent group online called www.pregnantwithcancer.org. There is also a wonderful doctor called Elyce Cardonick who specialzes in the very issue and I am part of her registry. Pregnant with Cancer put me in touch with her when I had questions....ahh...so many questions. I am thinking about you and I am here for you if you need me.

Yours, Juliet

************************************************ 

Re: Barbie reconstruction

From: Juliet Date: Mon Apr 04 2005

I am loving this conversation - makes me giggle everyday. If reconstruction of Barbie's boob is too complicated for everyone to achieve, you could try this approach... Your Barbie has IBC (inflammatory breast cancer) in which case reconstruction is a controversial issue. Most oncs do not recommend it at all. At the very least they ask you to wait for 2 years post end of treatment. So Barbie gets a MRM scar permanently - lucky girl.

Just a thought - : )

Juliet

****************************************************

From: Juliet Jones Date: Wed Apr 20 2005

Hi Everyone,

Yes, to confirm, as some of you have noticed, I have been disagnosed with mets in my meningies (the membranes that line the brain and spinal column) My symptoms were/still are severe headaches, backpain, vomiting, neckache and lately visual disturbances. All my back and head MRI scans were clear but I don't really get headaches so knew something was horribly wrong before the diagnostic lumbar puncture came back. Once diagnosed, the chemo was stopped and whole brain radiation commenced. The team made me aware that this is a serious and difficult to ttreat. Yes, depressing but I would rather they were honest. I am holding up OK. Last week the headaches and vomiting got so bad, I was admitted straight
into the main hospital and discharged 4 days later. They inserted a shunt into my brain to relieve the increased pressure/ease the confusion and vomiting. Seems to be somewhat better now...I am back on WBR. The sooner
that is completed to soon I can get back on chemo (A&C that was working!)
. I anyone has any advice abut this....please let me know. I am fortunate to have a neuro-oncologist who has been very honest with about this condition. He has made me aware that this condidion is "hard to treat" and that from this point onwards I have as best about one year left. Tough to hear but glad he has been so honest with me.

Speak to you all very very soon,

Juliet x

************************************************* 

From: Juliet Jones Date: Fri Apr 22 2005

Yes you are right once the rads are done they have various plans up their
sleeves - methotrexate in high doeses is the main one they have mentioned to
me thus far.

I'll keep you all posted....

Juliet xx

*******************************************************************

Juliet Jones died lat night after fighting IBC for 3 years; she leaves behind Katie our 2 year old daughter and myself, Richard her husband. I know she used these support groups a lot as they were a valuable tool so wanted to let the community know.
Good luck to the rest of you out there fighting this difficult disease but we have lost another soldier.
All the best,
Richard.

**************************************

JONES-Juliet Nicola. 35, died on Friday, June 3, 2005, after a three year bout with cancer. She was born in Amersham, England, in 1969, to Richard
and Dorothy Luke. She is survived by her daughter Katherine Juliet, sister Rebecca, mother Dorothy, father Richard and husband Richard. We will all miss her dearly. The cremation will be held at Ferncliff Crematorium in Hartsdale, on June 8, 2005, at 11 am. In lieu of flowers,
donations may be made in honor of Juliet to IBCResearch
(http://www.ibcresearch.org/donations/).
Published in the New York Times on 6/6/2005.
******************************************************************************

Thanks to everyone who have sent me messages of condolences. Juliet was obviously respected and loved by all. I have put a notice in the New York Times for her (http://www.legacy.com/nytimes/LegacyHome.asp). The note describes the arrangements, any donations in lieu of flowers and a guestbook.

Regards,

Richard.(Juliet’s Husband)

**********************************************************************************************

Juliet, the IBCMETS.ORG brothers and sisters will miss you so very much !!!!!

When the next baby girl is born, there will be a pink ribbon, Hopefully, this will be HER LAST PINK RIBBON ????

-Pink Stinks,

Susan Andrews

(posted with family's permission)

Shelly L. Slick, 37
SEPT. 23, 1967-MARCH 12, 2005
Shelly Lynn Slick, 37, of Hagerstown, succumbed to her battle with breast cancer early Saturday morning, March 12, 2005, at Washington County Hospital, Hagerstown.
Born Sept. 23, 1967, in Hagerstown, Md., she is survived by her father, Edward E. Slick Jr. and Bonnie Hersh, and her mother, Nancy L. (Carr) Hansen and Michael Hansen, all of Hagerstown.
Shelly graduated from South Hagerstown High School Class of 1985, and later graduated from Award Beauty School, Hagerstown.
She lived in Key West, Fla., and Hagerstown, where she was a food and beverage manager for several hotels for more than 15 years, and a hairstylist for many years.
Shelly was a member of St. Paul's Lutheran Church, Funkstown.
In addition to her parents and stepparents, Shelly is also survived by a maternal grandmother, Mary Carr; paternal stepgrandmother, Betty Slick; one son, Alexander E. Slick McAleer; one brother, Michael E. Slick; one stepsister, Tammy Hersh; two stepbrothers, Robbie Hansen, all of Hagerstown, and Mick Hersh of Smithsburg; and several aunts,
uncles and cousins.
The funeral service will be 1 p.m. Wednesday, March 16, 2005, at Gerald N. Minnich Funeral Home, 305 N. Potomac St., Hagerstown. The Rev. Darrell L. Layman will officiate. Burial will be in Rest Haven Cemetery, Hagerstown.
The visitation will be 6 to 8 p.m. Tuesday, March 15, 2005, at the funeral home.
The family suggests memorial contributions may be made to Hospice of Washington County, 1500 Pennsylvania Ave., Hagerstown, MD 21742; Breast Cancer Awareness of Cumberland Valley, 324 E. Antietam St., Suite 307 B,
Hagerstown, MD 21740; Shirley B. Robison Memorial Fund, c/o Jessie Kretzer, 10933 Hartle Drive, Hagerstown, MD 21742; or to Making Memories Breast Cancer Foundation, 232 S. Cole Ave., Molalla, OR 97038.
The Gerald N. Minnich Funeral Home, Bryan K. Kenworthy P.A., 305 N. Potomac St., Hagerstown has been entrusted with the arrangements.

 (This was sent to the online support group from a family member of Shelly's)
 
I regret to inform you that Shelly passed away today March 12 @ 8:00am. She fought hard clear to the end. She was alone with her mother when she passed. It has been a hard time for everyone that knows and loves Shelly. I know that all of her innernet friends were very special to her. I greatly appreciate everything everyone has done for her. If you could please let everyone know that needs to know I would greatly appreciate it. Also if you can let me know what the support group is called that you all belong to so we can mention it in her obit I would greatly appreciate it.
Thank you
again for your support.

 

( Even though I joined the group after she was no longer participating, I discovered that so many members cared for her very much. They would constantly try to find out how she was doing. They were all pulling together money to send her on a trip. It made my heart so heavy when I saw the post to the group that said Shelly was now too sick to go on the trip. I'm sure it sent a shock and pain through out all the group members that believed she'd make it. It really broke my heart to see that she had to leave a son behind and that his mother won't be with him anymore.) Susan Andrews 


Susan Jean Steelman-Bragato

State and nationally known organizer of and advocate for charter public schools
A loving and supportive mother

August 25, 1957 – January 5, 2005 
Age:  47 years
San Carlos, California

She was diagnosed with breast cancer in late 2002
and spent the last two years of her life campaigning
for breast-cancer awareness while undergoing more
than 50 chemotherapy treatments. Shortly before she
died, she created a Web site,
www.TheDarkerSideOfPink.org,, to raise awareness
about the lack   of research dollars allocated for
metastatic breast cancer.

Three years before, prior to her diagnosis, she had participated in the rally as a night chaperon, with her two teenagers participating on the team. In her recent speech,

Susan recalled watching the survivor's lap and the emotions of seeing bravery and courage at its best. Never in her wildest dreams had she considered that she would one day be walking that survivor’s lap, which she did for two years.   

Shortly before her death, and at the urging of a networked group of hundreds of fellow breast cancer survivors around the country, she initiated a website called TheDarkerSideOfPink.org.  The goal is to raise awareness about the lack of significant research dollars allocated to metastatic breast cancer research and treatment and to urge women to take personal responsibility to detect and seek treatment for breast cancer in its early stages. 

I wished I had gotten the chance to be her friend for a lot longer.......

Link to "The Darker Side of Pink"

Just a Few of the Friends We've Lost to Breast Cancer

Mirielle, Switzerland in Dec 2004

Sue Bragato, CA in Dec 2004

Linda from Cost Rica Jan 2005

SherryO, CT on 1-4-05

Cyndi, MN in 2-9-2005 (Ovarian ca)

Ginny Mitchell, Calgary in 2-2-2005

Susan VanRooyen, GA in Feb 2005

Shelly Slick, MD 3-12-05

Dawn Johnson, TX 3-14-05

Janet Krakauer 4-19-05

Indira Menon, CA 4-29-05 

Maria O*Shea, Ireland 4-28-05

Francine Berger, NY May 2005

Juliet Jones, NY 6-3-05 

Margie Leppert 6-10-05

Beth Martin, TX 6-11-05

Patty Brinkmann, GA 6-18-05 

Betsy Sue Bergman, 6-13-05

 
 

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