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Old 09-25-2007, 08:51 PM   #21
StillHere
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Hey Pinki
I know sometimes I do not chime in when everyone is doing the you rah rah thing. It seems the mind set on this site is that you must fight to the very end, no matter what. I am much more orientated to the high quality of life vs the long quantity. Of course my children are both grown and on their own. I know if I had young children, I would do everything in my power to hang around to raise them. I just want everyone to know that I support you in whatever way you choose to live your life, be it with numerous treatments, or if you decide enough is enough. I reserve the right to change my mind if and when I happen to develope mets. That being said, I will be forever grateful for all the helpful information and warm responses sent my way. For now, I just want to try to live life to it's fullest (yes, that is why I look like a chipmunk with cheeks full of sunflower seeds - I am going to eat what I enjoy and travel as much as I can possible afford) while I am realatively healthy and have the stamina to do so.
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 09-25-2007, 09:14 PM   #22
hutchibk
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I like both mindsets, personally. I try to integrate them mentally and emotionally. I live the highest quality of life that I can possibly discipline myself to live, and I intend to live as long as possible. I don't know how my decisions to continue to fight might eventually be altered based on how treatments might play out, but that is not my worry today! My only worry each day, for now, is to nourish my body so I can continue to tolerate whatever treatments I need to try, and do whatever I must do to live healthy and feel good for as long as possible. I am aiming for another 50 years...
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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 09-26-2007, 05:54 AM   #23
PinkGirl
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Chrisy, That surprises me that you would feel that way because you are stage 4. It seems to me that the "major" contributors here are the stage4ers.
I like your photo with the glass of wine, which reminds me that Tiptoe the hamster likes wine and beer - she got hammered the first night here and I have the pictures to prove it -- maybe it was the jet lag.

StillHere, You mentioned something that I think about alot. I also don't get into the "rah rah, you go girl" stuff very much. I am very, very happy when someone gets good test results, but I often think about how this board would respond to people who are calling it quits with the treatments. Last year, two very close friends of mine died from cancer, one breast the other ovarian. One stopped treatments and the other did not have any options. I also have a problem with the "positive attitude" thing. I also had a friend who died from BC after a 3 year fight. She had the most positive attitude I have ever seen up close, and the disease took it's course and she died. I think of it as a way to blame the person for not healing themselves. And I think a lot of it is because people cannot handle the randomness of this disease. They are so afraid of having cancer that they find reasons why someone dies from it -- like she smoked, she was stressed out, she didn't eat well, she didn't have a positive attitude. I also don't think we know for sure what is keeping us alive. There are people out there drinking green tea, taking supplements, drinking olive oil, pushing the omega 3's and doing very well. But who knows why they are doing well? I am starting to rant....hope Andi doesn't read this or I'll get a 4 page lecture
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 09-26-2007, 06:21 AM   #24
Mary Jo
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!!

Hi Pink,

I'd like to comment on a few things you said........mainly, the positive attitude thing. I believe STRONGLY in a positive attitude but not for the reasons some may think. I don't believe a positive attitude can alter the length of our days anymore than I believe eating certain foods etc. can add years to our life. I believe that is in the Hands of our Lord and Savior. Afterall, we are all going to die at some point - whether we eat a cookie or not. That being said..........I believe STRONGLY that a positive attitude and how we nourish ourselves can play a HUGE role in the quality of our lives. I believe being a "healthy" person can play a huge role in the the quality of how we live - how we feel etc. I don't believe we can change the "date" our Lord is going to bring us Home to Himself but I do believe that the consequences of some are actions can play a role in how we "feel" as we walk through this life. Not always, I know.............there are always those who seem to do "everything" wrong and nothing SEEMS to touch them..................but for the most part I believe in the "reap what you sew" mentality.

Afterall, the Lord says these bodies of ours are His temple so by golly, we need to care for them to the best of our abilities.

I heard something the other day on a radio program I was listening too........................Pain or misery is inevitable............the way we handle it is optional!!!!!! My philosphy is this - live your life to the absolute fullest each day - MAKE each day great (if you can) - carry that positive spirit with you whereever you go and care for youself well as it's the only self you will ever have.

Half full - half empty - I prefer half full!!!!!!!!! :-)

Hugs to all,

Mary Jo
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"Be still and know that I am God." Psalm 46:10

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

<>< Romans 8:28
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Old 09-26-2007, 06:56 AM   #25
PinkGirl
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Marejo
Hi, I agree with you. If you've got your choice between a good or bad attitude, pick good. I am not all doom and gloom - far from it. I actually have a positive attitude and a "strange" sense of humour. I agree with you that it gives us a better quality of life. When I was first diagnosed, I had so many people calling me and telling me to STAY POSITIVE !!! I got to thinking that if I had one "down" day, the cancer cells were going to gobble me up.
I thought I had enough problems to deal with - I didn't want to start worrying about putting a smile on my sad face. I think the positive attitude is one of the many things we can do to help ourselves have a better quality of life.
I'm still waiting for Andi, Andi, Sweet as Candy, to give me a blast of something.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 09-26-2007, 10:09 AM   #26
Believe51
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Posts: 2,999
My two cents.....

If you want to ponder about what people would feel about someone stopping treatment I will give you my opinion. My husband would be no less of a hero in my book if he chose to stop treatment. In fact, I have told him when he chooses to stop that I will accept the choice he makes. When he started this journey he was in the process of already dying and very quickly at that, and I did mention at that time he had the right to refuse treatment. This is a personal disease and we all have our own choices to make concerning the quality of life. I love all my friends here no matter what thier choices for treatment are. It is my nature to do the rah rah thing, which since I know this offends you I will refrain from doing so. Basically in a nutshell, I support my friends no matter what their choice is, just as most of the members here do. Support is unconditional just like the love I provide, it is me and always has been.

As for the rah rah thing I firmly believe in it and it has always been my nature in life long before breast cancer. It is not a blame game if someone loses to this battle whether they had a good or poor attitude. This disease has taken from me some of the most heroic heros, some positve, some negative, some religious, some not. We do not need to smile if we do not feel like it, breast cancer or not for it does not take breast cancer to make a person do that. As for people saying "Stay Positive" or "He will beat this, he is strong & healthy", sometimes people on the outside do not know what to say, just that they want to remain supportive. It is your job as a patient to tell them, "I do not want to smile today", if you do not say what YOU feel, it is all with you.

I am with Brenda, I like both mindsets because it is such a random journey. This is a disease none of us wanted in our lives, what we do to heal or how we go about it is totally up to us and how our bodies accept it. Sometimes that involves a positive attitude, sometimes someone is not religious. All I know is that I shall never know why or what helped my husband to get worse, then better, then worse, now on the up. I shall continue to Believe, I shall pray, I shall do the rah rah thing, I will research, I will shall be the best caregiver that I know how to be, we shall communicate. I know when to push him to eat or to let him sleep, that is from communication of what his needs and wishes are. So PinkGirl, I am sorry if I personally am one of those rah rah persons you mention but it is my means of support and certainly my personality.

If you ask me about this journey I have said before that I view it as a circle. We get diagnosed, we learn, we give, we get the best medical team together, we support, we nuture. We look for the best medicine that suits our needs with this most personal journey. We give back to others who are affected now or maybe in the future to help them on this path. If something in the circle goes amuck, such as the medicine does not work, well, the circle is not complete. The friends I have lost had almost perfect circles, but the chemo stopped or they were weakened because they had no support team. I know this may sound crazy to you PinkGirl, but it is my visualization of this horrific journey. It is a combo of many things that gets us through, sometimes fate plays the part.

It certainly is OUR choice on our attitudes, treatment choices, or even the decision to stop that treatment. I Believe in the power of choice, positive thinking, prayer, some degree of nutrition (hubby was the healthiest person I knew BEFORE cancer so nutrition thoughts are quite different now). I think that quality of life is important whatever your choice and communication is key to obtain your desires of that quality. Again, I love everyone here the same, some women I know better than others, but the love remains the same. I remind you that these are MY feelings and I guess whatever gets me through the day. It is all I know. And I will always view my husband as the hero in my life no matter what. Let us face it, this disease WILL COME TO GET HIM SOMEDAY, just not now.

Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 09-26-2007, 10:37 AM   #27
AlaskaAngel
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Mutual support

I am grateful for this discussion, as controversial as it is sometimes. Feelings can get hurt in such discussions but we all are welcome here whatever our position on this issue might be, and we do learn from each other.

As my contribution to it, I would like to point out that although this forum appears to be largely made up of those in the US, anyone worldwide is welcome. I just want to be sure we acknowledge that worldwide, the group of those who have little access to care is significant -- including a fair number even in the developed countries like the USA.

Acceptance of end-of-life circumstances and that philosophy can be based on something as simple as economics.

Again, I thank Joe and Christine for giving us this place to thoughtfully and politely air our concerns.

AlaskaAngel

Last edited by AlaskaAngel; 09-26-2007 at 10:39 AM.. Reason: hopefully, to clarifiy "acceptance"
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Old 09-26-2007, 11:45 AM   #28
Believe51
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Posts: 2,999
Wink No Hard Feelings....

Controversial yes, but I do not think anyone's feelings are hurt ('course I cannot talk for everyone). We all have our views, different as they all may be but they are our feelings. We have the right here to express ourselves as we chose and our feelings are just that, OUR FEELINGS.

I am not hurt and I hope I have not hurt anyone here today or EVER!! I am a bit sensitive today and maybe that is why I appear to be paranoid...LOL!!, but just expressing myself as always.

And just because I may be a rah rah girl, I still get depressed and scared and sick of people saying that it will be alright. I have moments of feeling like 'doom', I get overwhelmed and anxious, with loss of appetite for days. So I am not always rah-rah-ing. There are times that I want to crawl in a ball and die. (How is that for honesty??).

.....but I do still believe!!

Unconditionally I Love You All>>Believe51

PS: Both of my posts are sent with love, no hard or negative feelings, and certainly just so I could get things off my chest.
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 09-26-2007, 11:55 AM   #29
hutchibk
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I used to not be a fan so much of unabashed rah-rah, because I am more logically and pragmatically oriented by nature (and astrology, haha), but I feel a bit differently and am mostly grateful for it since my cancer dx 4 yrs ago. It inspires me to push through the tougher, darker days... to not give up now when physical and emotional b/c grind can feel like it's burning me out. This magnificent site and you lovely people remind me, when I need reminding, that a low day today is not the end of the world, but just a low day. This is an exhausting disease. Enough said. And when my partner is burned out by it and shuts down from time to time, I especially appreciate the rah-rahs from my Herceptin Honeys and Tykerb Tigers.
__________________
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 09-26-2007, 12:05 PM   #30
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Exclamation Did I hear my name mentioned???

AN ESSAY ON *POSITIVITY*. I HAVE GROWN TO HATE THAT WORD! It's like being a *liberal* nowadays. Has come to sound like a dirty word. I am a cheery person by nature. I joke midst most ordeals. Pinkie, you label your sense of humor *strange*. Maybe that's what I love about it. I'm a bit strange myself! I just seem to put a positive spin on life's obstacles. Though I can't find one at the moment re my low HGB count. There's nothing funny about feeling like your life is in the toilet. I just post, and whine. So yesterday, I took the bull by the horns and called my cancer center! I spoke to someone who knows someone about my desperation for energy. Long story, won't bore y'all with right now. Only if you ask... Tehehe.

And no cheery side to losing a long list of loved people to bc, or ca in or anything for that matter. In the last 2 yrs I have lost dozens!!!!!!!!! I have wrestled w/my sorrow, my sense of loss, my consternation w/those who had The very best of attitudes, and a young child who passionately motivated her to stay here... What went wrong???? Surely she did her 6 verys best to hang in! This I KNOW and BELIEVE and feel blown away by, esp. It tampers w/my belief system.

I believe -- what you think about all day determines how you will feel. If you are wallowing in self-pity (like me midst my total lack of energy despite my supplements) and sorrow (that I can even pretend to be normal at this low level) -- I will feel MISERABLE. I think the quote is something like pain and suffering are a part of Life, but MISERY is a CHOICE! I am soooo aware of that. AND, I believe that what we occupy ourselves all day, what we dwell upon -- predicts outcome. I KNOW I can do this, I will survive, I will be victorious -- that's what every *winner* thinks and believes with all their heart, down to their core. It predominates their dreams and takes over their life in big and the tiniest of ways. And, this in turn, makes you feel in control, joyful and serene, KNOWing that you have the power to call what you want to you!

When I have dark thoughts, and of course I have them, I experience them as quickly as possible and then move forward and upward. I made an appt for next yrs mammog and said a silent prayer that I should live and be well. My granddaughter will graduate from middle school in 20??? and I want to be there, but WILL I BE THERE POUNDS AT ME, intimidating me into submission. Then, I move on to, YES, I WILL BE THERE! I WILL BE STRONG AND HEALTHY. NO MORE CANCER. I say this to myself all day, every day. I remain on guard duty, trolling for the tiniest hint of darkness, I claim them as they are mine. I know they need HEALING. I experience the ugly ideas and the emotions that go along w/them and then I shove them over a cliff w/ev oz of strength I can muster (like lifting a car off your child IF GOD FORBID A HUNDRED GEZILLION TIMES SUCH A THING SHOULD HAPPEN). You could do it if you HAD to. That's how I see gloomy thoughts. They must go. I have no room in my life for them. They are poisonous and I will not allow them to pollute the blessing of my life.

I have gone deep within since childhood (when I lived in fear of the next, regular, uproar emoting from my father). I lived among landmines. I learned to be brave and strong. I would go, or run, to the bathroom, close and lock the door in one motion, and go within. I now know that what I was doing was connecting with my Spirit. It is wise and knowing. It wants what you want. It nourishes you and guides you. It has the power to instruct your mind to command your body to do its bidding. If you tell your body (even in whispers) that you can see the handwriting on the wall, that you know your time here is limited -- your body will accommodate that line of thinking. So we must be very careful what we feel our mind!

I, like Brenda, live each to the fullest, and that changes from day to day. The last few wks, since returning from NY w/a cold/flu, coupled w/low for ME HGB count, I have lived in a nightgown. A few days, I put makeup on. A few days, I pushed really really hard and went to see my grandkids, though I was sad that I couldn't bring myself to hug and kiss them for fear I would make them sick. I LOVE THEIR HUGS AND KISSES! They soothe my Soul and lift my spirits. I had to be content w/gazing upon them... Bummer.

I do believe that we are written in the Book Of Life, but that their are several paths we can take. We have been given the power of choice, and the power of our thoughts to call our desired destiny to us, even against all odds! Our faith must be strong and intense to achieve this, but it can be done. I, like Brenda (and I am a whole lot older than she) am on the 50 yr plan, regardless. I see myself far, far in to the future. My picture on the Schmucker's jam jar w/little old Williard Scott pronouncing me 101 or whatever. At my grandchildren's weddings (including the 1 yr old). A great grandmother (or *Mima*) as my grandbabies call me. I'm sorry but I do not relinquish what I see as my God-given powers to be the captain of my fate, the master of my soul (just as the poem Invictus suggests)! I'm no cutsy little cheerleader, I am an empowered Soul, full of the divine energy of my Creator. I am learning to evolve and grow, gleaning Lessons along the way, as I was always intended to do. Scientists tell us even geniuses use only 95% of their brains. Surely, we are meant to come out of embryonic phase of being and move to expand our awareness and our ability to control our lives with greater impact, to begin to utilize the unused portions of our brains and claim our truest destiny.

Sorry, if I sound like I'm lecturing. I am just so very passionate about my beliefs. I do feel more energized as I type these words! Thanks for hearing me out, and for the LIFT! Life is awesome...
Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-26-2007, 12:14 PM   #31
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I have never watched Dr. Phil on TV. I didn't even realize that he was the author of a book I bought recently at Goodwill titled "Life Strategies.' It just sounded interesting. I finally picked it up the other night and started reading it. Another time in my life I might not have picked up on this but that night it meant something to me. I quote "The fact that your problems aren't headlining the six o'clock news does not mean that your problems are unimportant, at least not to you. Believe me when I tell you that if you don't step up and fight for you, then no one else will.....Don't feel as if you should minimize your problems, or apologize for them. Our world has for too long conditioned us not to make waves.....If I've broken my ankle, and the guy in the next bed has just has his leg amputated, that's terrible but it doesn't make my leg hurt any worse." There is more to it but what it is saying that no matter how much we try, it is all relative. And if our problems are not important to us then they will not be important to others.
I have been so aware the whole time since I was diagnosed that there are so many people so much sicker than I am (and at this time who knows what stage I am.) I have worried about bothering the nurse or the doctor because everyone else "obviously" needs their attention so much more than I do. Even on this forum, there have been times when I have been almost reluctant to ask questions about what some times seem to be insignificant problems. Because I know that it can be so much worse. I finally told the oncology nurse the other day, when they had forgotten to schedule my herceptin treatment TWO weeks in a row ( and a couple of other things), that this was my life. I know I am not their sickest patient and if I have anything to do with it I am not going to be their sickest patient. But I am not going to feel guilty anymore because this is my life and I have to take care of me. I will not be passive. None of us on this forum who are not (or are? maybe?) stage four know whether or not we will become stage four. The stages are fairly arbitrary anyway, a division that may or may not exist on a microscopic level.

What we do know is that we have all been diagnosed with breast cancer or have loved ones who have and we all have the fear, the courage, and the need to know more about this cancer that has come into our lives and changed so much. I don't think that there is time to worry about whether we are sick enough to be sick. I think that any question you have is valid because it is important to you. Treatment related questions, intimacy questions, research related questions, emotional questions, someone here has been there. There are so many people here who are so wonderful and open about what they have gone through and some of them have gone through so much more than I have. I am thankful that they are willing to share their knowledge and coping skills. I would never have wished this on anyone but I am so glad that this forum is here for us all to connect with each other.

Leslie
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 09-26-2007, 12:23 PM   #32
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Talking more from me...

Hi Believe, I am, in no way, offended by the rah, rah, stuff. And if I was, it wouldn't matter on this board because it is full of rah, rah, people.
When I reached the 2 year mark, I posted about it and enjoyed all of the congratulatory responses. I'd say that's a bit of rah, rah.

You know that question: What do you know for sure? Well, when it comes to this discussion, I have lots of opinions, but I don't know much for sure.
I was just thinking out loud and certainly don't have a problem with any of the posters who pour out their hearts with exuberance and joy. It doesn't bother me one bit.

I debated on starting this thread. I was going to add it into HavahJ's "Goodbye" thread or as a reply to Tousled's "thread lightly" in the thread about keeping in touch if we're too sick to get to the computer. I wasn't trying to stir anything up.

I gotta go now. I promised the hamster I'd take her on a walking tour of the town. Wonder if I need a leash..........
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 09-26-2007, 12:33 PM   #33
Andrea Barnett Budin
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Talking I Hope I Haven't Offended Anyone!

THE OPINIONS EXPRESSED IN MY POSTS ARE A REFLECTION OF MY STRANGE MIND. PLEASE DO NOT TAKE THEM AS FACT PROVEN IN A SCIENTIFIC LAB. YET... tehehe


PS My attitude may sound a bit bizarre, but I have known bc survivors who died of something entirely different 30 yrs later. My Aunt Bernice, Saul's mother and a # of others. These stories captivated. They are true. And they are lessons in and of themselves. My cardiologist (I have hi bp and a body that manufactures cholesterol, regardless of diet) told me yrs ago that it was his job to make sure I don't die of heart disease. He pointed to his many files. Every one of my patients has good bp, good #s in every way. I keep on top of them. Every one. And I thought, great. I figure for now Vit H and my oncs and my supplements and my prayers and my family's love have me covered re bc. So, I'm thinking I better watch extra carefully when I cross the street!

I once read that there's a village in Russia where everyone lives to be well over 100. They were formally studying the habits and genetics of this village, for all of us to benefit. One man, 114, died -- because he fell off his roof while repairing it! Isn't that crazy??

My friend Judy (the widow of a ca patient 1,000 yrs ago) is remarried to a widower (of a leukemia patient). They each lived on my block. Together, their families became one -- w/5 kids. She is wise and fun and one of my favorite pp in this world. She has always said that she just hopes when she dies that it isn't a joke, like choking on a chicken sandwich. She says she eats M&Ms all the time, when she's driving, and she often thinks that she doesn't want to die looking down to reach into the bag of candy and be found covered in M&Ms! Pinkie, my *strange* sense of humor calls that really funny!
Andi

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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-26-2007, 12:42 PM   #34
fauxgypsy
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Okay, I read more and I have an opinion not a surpise, huh?) about the rah rah thing. I do believe that it helps to be positive. But it also helps me to be able to express my feelings which are not always positive. For me the idea of positive is to make plans for next year, for adding on to the house, for going back to work and being able to run my business and spend time with my family, for my husband and his wonderful support. For having a life during and after cancer treatment, not dwelling on what may happen and living in the now. But there are some days when I want to strangle the person who pops up and tells me to look on the bright side (and I do have much to be thankful for) when they don't have a clue as to what I am feeling or what a sense of loss I have. Or how much it would hurt to strangle them. Right now I am not so much grieving over the breast I lost, as over what right now seems to be lost opportunities; will I ever be able to do the pottery I was planning on, will I be able to help build the room using the nail gun like I did before?. On my good days I remind myself of everything I still have, on the bad ones I sit in my office and cry and have my tantrums because life is not fair, always knowing that it will pass and I will remember how lucky I am in my treatment and all that I am still able to do and all the people I haven't lost. To me being positive is being able to acknowledge all the bad stuff and then move on. Not to let it paralyze me. I am so happy and blessed by the people here who are positive but I know that they have come through this fire and that they make make a conscious choice daily to put the best face on things that they can. Go Andi Go! Believe51, keep believing. I don't mind cheering for you.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 09-26-2007, 12:43 PM   #35
Andrea Barnett Budin
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Wink Sorry. I Don't Mean To Be A Hog...

Leslie, I am so busy typing, I just took a minute to read your post. It is so poignant and well expressed. Absolutely right -- THIS IS YOUR LIFE! Regardless of your sickness *score*.

One other point, over the yrs friends have expressed their upset about their health re an array of issues. They often say, I feel so stupid telling YOU about MY problems, after all you have been through. I immediately and always tell them, Don't be silly! YOUR problems are important too. Don't compare them. This is about your body and your life. It is no minor matter. I'm listening. I want to help...

I LOVE ALL YOU WONDERFUL LADIES ON THIS SITE. YOU ALL JUST BLOW ME AWAY WITH YOUR WORDS. Thank you Joe and Christine. This site is such a blessing in my life. I will be eternally grateful. I just shiver to think how much positive energy you have stirred up in the Universe! In accordance w/karma, Cosmic Law not yet codified -- *like* positive energy will be returned to you! I pray for that.

Every thought is like a prayer. Every prayer has the potential to be a miracle...
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-26-2007, 12:44 PM   #36
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Smile death

Andi
I don't want to get hit by a car and die in a McDonald's parking lot with a large bag of Big Mac's in my hand.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 09-26-2007, 12:59 PM   #37
Andrea Barnett Budin
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Thumbs up Oh No, It's *me* Again!

I type. I stop. I read. I am just moved to respond. So, I just have to say -- Leslie, I know what you mean. Those who tell me, You'll be fine! I hope so, I respond on my weak days, as I'm working through the darkness. You've done it before -- you'll do it again. THAT'S when I want to strangle them. Like doing a triathlon every day for a year, or more. You did it before... They have no clue!

BTW, when I have those Will I ever again moments, I indulge for a while, feeling remorseful and miserable, then I wake up! I go right to I WILL do this or that again! With resolve. And passion. And stubborn determination. (I come from a long line of stubbornness...) Suffering comes when we struggle!, I have learned. When we consciously choose not to give in to the possibility of NEVER, we become filled with defiant energy vs defeatist energy. We gain some control over our lives. We breathe some life into hope. We dare ourselves. We set goals. We do not constrict ourselves to limitations. And we do that, one day at a time. One step at a time. Like if you were wearing a long really tight straight skirt that only allowed you to take baby steps. You just keep inching your way forward... I'M CHEERING for (and praying for and applauding) you LESLIE! You will staple gun again! I picture Scarlett O'hara standing before her burned house on the plantation, with a potato in her raised hand -- resolute and strong!
Sending loving energy to all my Sisters and Bros... ALWAYS, you amazing group of extraordinary people...
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-26-2007, 01:08 PM   #38
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Cancer is cancer no matter what stage or type - it all SUCKS!!! I have never felt like I didn't belong here because of anyone. I've got plenty of experience to offer advice, so that's not my problem either. I have felt that there wasn't any information for me here. Even though I had stage IV Inflammatory BC, mets to the liver/lungs and I am Her2+, I had to put all the cancer stuff on the back burner and the leukemia became my main focus. Unfortunately, even the leukemia chat boards don't have much to offer..not many people dealing with my situation and the boards are very slow. Sometimes people don't post for days. So I come here for the love or support, check on everyone else and offer what I can, when I can.

I am not a hero, brave or anyone of the many things people say. I am very selfish and do not want a world without me in it. As many times as I have been "sick," I never let myself actually believe it. I always try to laugh and live - going places I shouldn't be (according to everyone I should be in bed resting). The more I act sick, the sicker I get. The more I live, the better I feel, so I'd rather push myself and live every day as best as I can. Do I do the rah, rah thing - sometimes. But when I meet someone just starting out, I always offer real advice not the courageous/hero crap.

I have been on other bc boards where one or two people feel it is their duty to start fights and question peoples authenticity. That can make people feel that they don't belong. I have never seen that on this board and think that it is wonderful not having to add an Internet troll to my already huge problems (thanks to Joe for keeping these boards clean).

In my opinion, if you've been stage 0, stage IV or any where in between, if your a caregiver or lost a family member or if your just curious you belong here.
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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 09-26-2007, 01:14 PM   #39
Andrea Barnett Budin
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Cool Post, Read, Respond. I Can't Help Myself...

Stopping tx is a very drastic, gravely serious and personal decision. I have had to accept and respect such choices on several occasions, though it deeply pained me. I knew it wasn't *my* call. I gently rah rahed (as I could not stop myself) and then I quickly backed away and prayed for them. That is all you can do. I asked permission to pray for a miraculous outcome and received it each time.

Maryann, What is milk thistle? Thanks for all the things to look out for, as we must each learn from one another's experience. You've been through so much, honey, but there is no messing with YOU, that's for sure. You are one strong, determined, focused lady...
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-26-2007, 01:18 PM   #40
hutchibk
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Maryann Madubois63 - "I always try to laugh and live - going places I shouldn't be (according to everyone I should be in bed resting). The more I act sick, the sicker I get. The more I live, the better I feel, so I'd rather push myself and live every day as best as I can."


Good for you girl and I so totally agree!!! That is how I approach everyday, too!

Rah-rah!
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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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