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SoCalGal
06-19-2007, 10:12 PM
I am addicted to this site. The information is both comforting and overwhelming. You really have to be SMART to survive cancer.

I don't want to think this hard. I don't want to eat a special diet, take special pills and worry about how my cells are working. I don't want to read about coconut and wonder if I ate too much, not enough or if it really matters at all. I am almost 50 years old. I just want to be a normal girl again. I want to wake up tomorrow and not have to worry.

nancy dip
06-20-2007, 03:06 AM
I so agree with you!!!
I think the mental aspects of this disease are totally underestimated or perhaps just not spoken about.

I have been trying to learn about eating better and now I just eat food groups--not meals. Is this how I want to live??

Obviously I want to live, but much of the joy has gone and I cannot shake off the fear of recurrence. It taints everything. I hope that when I finish chemo things might get better.

Kindest regards Nancy

Mary Jo
06-20-2007, 04:11 AM
Dear Flori,

I so understand what you are saying and I agree wholeheartily. The longer I am out from diagnosis though, I do find that my attitude is becoming more and more as what you wish for. Of course, I will never be the "old" Mary Jo. That changed almost 2 years ago when I heard the words "I'm sorry to tell you, but you have breast cancer." BUT, I'm coming to realize that ultimately what will be will be. I've talked with so many people and sadly, there really is no rhyme or reason to this disease.

Please don't misunderstand me though. I do realize the importance of eating right and exercise. Those are key for all areas of good health and life in general. But for me personally, I'm coming into the thinking that this is my life. I will take care of myself the best I can but I realize even that doesn't guarantee a "perfect" life in any sense of the word. I TRY not to put too much thinking into EVERYTHING that comes my way but TRY (and succeed most days) to enjoy each day for what it is. I realize today is all I have and to make the most of it.

Here's to your "new normal." May it become the "normal" that brings you peace.

From your "sister" who understands,

Mary Jo

Esther
06-20-2007, 07:00 PM
Flori, I hear, I've been there many a time. There are times when I am super motivated to do all the right things for myself, and then there are times when I just don't want to think about it and forget the supplements, and alot of other things.

I think we just do the best we can. It's really hard to do all the right things all the time. Cut yourself some slack and allow yourself a break from things at times, then go back to it when you feel up to it and are motivated.

fauxgypsy
06-24-2007, 07:02 PM
Flori, I know just how you feel. I do get tired of wondering if I eat this, will it cause that? I am afraid to gain weight and afraid to lose it. Do I take B6 for the neuropathy or will it make the cancer thrive? How much olive oil should I eat? After the recent news about the interactions of plastic with food to produce dioxins I have added that to my worry list. I look at all the supplements that are recommended and wonder if I would have room left for food. Sometimes it seems that the more I read the less I know. I have always tried to eat healthy but sometimes I just want to eat. To not think about the consequences with every bite. And yes, to feel normal. I feel as if my life is on hold. I am 51. I am taking some supplements, probably not enough. I think the Episcopalians got it right when they said "everything in moderation." I hope so, anyway.

Leslie

SoCalGal
06-25-2007, 09:07 AM
Hi Leslie,
Thanks for saying how you feel. I was reading the posts on the main board - the conversations about starving cancer cells, glucose and fasting...the people posting are so bright and impressively educated on cancer at the dna/cellular level. It overwhelms my brain. I am not educated in biology - anything past the very basics and I don't really want to be. It didn't appeal to me when I was young and it sure is not something I aspire to learn, yet in many ways I am forced to be up to speed as are we all. Are all survivors proactive and dilligent in their own medical care and decision making process? It sure seems it to me. Nothing laid back about this crowd - and nothing fly by night. Everything well thought out, researched, questioned. It's a full time job to manage your own disease. Again, a job we'd all like to quit. I feel lucky to have found this online community. Many days it's the only thing that keeps me anchored. If you all can do "it" then so can I!

Yesterday, two different people in two different phone calls asked me how I'm doing and when will I be done with my chemo treatment. I was somewhat speechless as I again explained that I will never be done with my chemo. STAGE 4 - I don't know why people don't understand my blunt explanations. Maybe everyone is just used to me having cancer occurances here and there and still surviving. After all, it's been 11 years, which to me just makes me feel that the end is nearer than I'd like. I can imagine people thinking, well, she got 11 years that most don't get.

It's so isolating - "chemo until progression". Trying to live "normally" on a day to day basis - to make plans for the future, to hear others speak of their day to day lives that seem so easy by comparison. Trying to feel normal and trying to be like everyone else who gets to pretend they will live forever. What a luxury that I did not cherish:)

PS I meant to say - I LOVE YOUR ART. I am an artist, too. Watercolors & india ink. Am just trying acrylics for the first time - it's HARD but kind of fun, too. For me it's all about the process and not at all about the product.

chrisy
06-25-2007, 06:05 PM
Most days I have moments when I wish it would all go away! One of my "balanced goals" in my business networking group was to keep current on research and treatments without obsessing. Pretty funny, huh! I am grateful for this board because there are so many knowledgable and diligent researchers here (Tom used to call them propellerheads!) that I feel like I can just dip into the well of knowledge. And only obsess a little.

Funny, but taking the Tykerb makes it harder for me to detach from the Stage IV reality. First thing every morning, I open up that bottle and take those 6 bright orange pills and think, "poo". Maybe I'm just anticipating...
But then most days I somehow just go on doing my life. Yes, in retrospect is was a luxury to not think about your mortality every day! Now the luxury is to enjoy and appreciate, really savor every moment of it. Most "normal" people also don't realize how special each minute is. Not that I wouldn't love to just take things for granted again!

Answering the "when will you be done with chemo" question depends for me on who is asking and what they want/need to know. You're right, they just don't get it. I usually say "until it stops working", or sometimes "another 47 years".

Hey, who needs normal, anyhow...

SoCalGal
06-25-2007, 11:58 PM
Good answer on the 47 years...one question, why are you taking so many tykerb pills? I thought the clinical trial was 5 a day. Just curious - my doc cut me down to 4 a day, which is making me nervous but the 5 a day were making me too sick. Are you handling 6 a day?

I like your photo:)

chrisy
06-26-2007, 12:10 PM
Flori, the clinical trial I am on (Avastin/Tykerb) is 6 Tykerb a day, possibly to get an extra boost as there is no chemo in this regimen. I'm handling it fine, have very few side effects except a very occasional diva thing, which is easily managed with immodium. I think maybe this combo is more easily tolerated then the Xeloda which, after all, IS chemo. Also, one of the possible side effects of Avastin is constipation - so maybe it averages out with the Tykerb to create "NORMAL" digestive processes!

Oh, there goes yet another "normal" we can't take for granted any more!

Andrea Barnett Budin
06-26-2007, 02:13 PM
I too am addicted to this site. What remarkable women! The new normal is so as all you describe. Omega 3s good, 6s bad, eat fish not meat, take your supplements (2 doz in AM, after empty stomach 8 + 2 doz PM +++). + Vit H ev 3 wks, which is great since 4 yrs of ev wk was wearing. I made my mammog appt for June '08, counting out ev 3 wks carefully to get it right. Thursdays are good for Paul and he is my companion on all chemos/monoclonal antibody treatments, every test, mammog, scan, sono, etc. Love that man. Makes me feel less "alone" w/the (whispered, horrifying ca...).

When people ask, You're STILL on chemo??! How long do you have to stay on it? I answer, smiling, after a pause to get their full attention and draw them into my serenity -- FOREVER... Still smiling. They respond, For ever... They turn their heads away and stare blankly at nothing, pondering the enormity. Then they look back at me. You're amazing! I laugh (knowing all my weak moments of fear, doubt, uncertainty). No really you are. Look at you. You've always got a smile on your face. And this is true. I monitor my thoughts. I weed out the funky ones, esperience them, vent them, type them out or write them down if need be and then release them. I consciously choose not to allow negativity to rent space in my brain. I choose not to remain a victim. I choose to see myself as a remarkable exclamation point with a smiley face and peace in my heart. I have finally learned to release all my yesterdays, all my anger, blame, fury, resentment, unforgivingness. I have let it all go. It is useless and not productive. I LIVE IN THE NOW, as Eckhardt Tolle so brilliantly suggests in his book The Power of Now. I look tomorrow with belief that it will be good. I take nothing for granted. I am grateful with each day for the gift of the day. I say THANK YOU to the Universe. I have a little pewter figure on bended knee, hands outstretched, palms down, forehead to the floor. That is how appreciative and aware I am of the joy of living. I also have a pewter thumbs up hand beside it, to remind me that I am doing a good job. I AM DOING THE BEST I CAN WITH EACH DAY, AND I ACKNOWLEDGE THAT EACH DAY MY BEST MAY CHANGE. And that's okay.

None of us signed up for this gig. Who wants to get the cancer? Oh me, me... I didn't raise my hand and volunteer. But I can honestly say tht I've gained so much, come to know some truly incredible people, present company included to be sure, grown and evolved to be so much more than I ever was, and that was pretty good. I feel a sense of Self that I never had before. I am a Soul. I have a body and a mind. And I know my mind can direct and guide my body to respond in accordance w/its' wishes. I am aware of all bodily changes and question it all, trying not to be paranoid but vigilant. I regularly meditate, knowing that nourishes my Spirit, which in turn keeps me strong and brave, determined and full of faith. That's faith in my own EMPOWERMENT! We each have been given such powers as our birthright. It is up to humankind to evolve to the point that we become aware of our innate and unused abilities and employ them for our full benefit, as it was always intended for us to do. I rejoice over this Awakening. I share it with every one I meet!

I pogram my thoughts intentionally with pure loving positivity. I use guided imagery to further feed my "being" with emotions that are blissful, harmonious, humbly grateful and full of awe at the beauty that surrounds us.

I pray for this new normal to bless your lives, my sweet Soul Sisters. Cancer has never read a book. It follows no true rules it seems. But we can write our own book on our own cancer and become pleasantly surprising miracles in our own right. I believe that with all my heart. I have a 10 pound rock that has the words BELIEVE etched into it. I used to keep it on my center island in my kitchen (one of the busiest rooms of my house) -- in my face, reminding me to BELIEVE. I now have it by my front door as you enter. I am asking each of you to push your snarly thoughts over a cliff and BELIEVE. Please don't go in to the how many more years do I have left. I had such a moment, making my June '08 mammog appt. How dare I dream? What audacity to plan so far in advance! Then, I said, I'm putting it on my calendar, knowing that if it is on my calendar, I will be there no matter what. Just keep shoving those ugly moments away and savor The Now, which happiness dwells... LOVE Y'ALL always, ANDI

Andrea Barnett Budin
06-26-2007, 02:16 PM
I too am addicted to this site. What remarkable women! The new normal is so as all you describe. Omega 3s good, 6s bad, eat fish not meat, take your supplements (2 doz in AM, after empty stomach 8 + 2 doz PM +++). + Vit H ev 3 wks, which is great since 4 yrs of ev wk was wearing. I made my mammog appt for June '08, counting out ev 3 wks carefully to get it right. Thursdays are good for Paul and he is my companion on all chemos/monoclonal antibody treatments, every test, mammog, scan, sono, etc. Love that man. Makes me feel less "alone" w/the (whispered, horrifying ca...).

When people ask, You're STILL on chemo??! How long do you have to stay on it? I answer, smiling, after a pause to get their full attention and draw them into my serenity -- FOREVER... Still smiling. They respond, For ever... They turn their heads away and stare blankly at nothing, pondering the enormity. Then they look back at me. You're amazing! I laugh (knowing all my weak moments of fear, doubt, uncertainty). No really you are. Look at you. You've always got a smile on your face. And this is true. I monitor my thoughts. I weed out the funky ones, esperience them, vent them, type them out or write them down if need be and then release them. I consciously choose not to allow negativity to rent space in my brain. I choose not to remain a victim. I choose to see myself as a remarkable exclamation point with a smiley face and peace in my heart. I have finally learned to release all my yesterdays, all my anger, blame, fury, resentment, unforgivingness. I have let it all go. It is useless and not productive. I LIVE IN THE NOW, as Eckhardt Tolle so brilliantly suggests in his book The Power of Now. I look tomorrow with belief that it will be good. I take nothing for granted. I am grateful with each day for the gift of the day. I say THANK YOU to the Universe. I have a little pewter figure on bended knee, hands outstretched, palms down, forehead to the floor. That is how appreciative and aware I am of the joy of living. I also have a pewter thumbs up hand beside it, to remind me that I am doing a good job. I AM DOING THE BEST I CAN WITH EACH DAY, AND I ACKNOWLEDGE THAT EACH DAY MY BEST MAY CHANGE. And that's okay.

None of us signed up for this gig. Who wants to get the cancer? Oh me, me... I didn't raise my hand and volunteer. But I can honestly say tht I've gained so much, come to know some truly incredible people, present company included to be sure, grown and evolved to be so much more than I ever was, and that was pretty good. I feel a sense of Self that I never had before. I am a Soul. I have a body and a mind. And I know my mind can direct and guide my body to respond in accordance w/its' wishes. I am aware of all bodily changes and question it all, trying not to be paranoid but vigilant. I regularly meditate, knowing that nourishes my Spirit, which in turn keeps me strong and brave, determined and full of faith. That's faith in my own EMPOWERMENT! We each have been given such powers as our birthright. It is up to humankind to evolve to the point that we become aware of our innate and unused abilities and employ them for our full benefit, as it was always intended for us to do. I rejoice over this Awakening. I share it with every one I meet!

I pogram my thoughts intentionally with pure loving positivity. I use guided imagery to further feed my "being" with emotions that are blissful, harmonious, humbly grateful and full of awe at the beauty that surrounds us.

I pray for this new normal to bless your lives, my sweet Soul Sisters. Cancer has never read a book. It follows no true rules it seems. But we can write our own book on our own cancer and become pleasantly surprising miracles in our own right. I believe that with all my heart. I have a 10 pound rock that has the words BELIEVE etched into it. I used to keep it on my center island in my kitchen (one of the busiest rooms of my house) -- in my face, reminding me to BELIEVE. I now have it by my front door as you enter. I am asking each of you to push your snarly thoughts over a cliff and BELIEVE. Please don't go in to the how many more years do I have left. I had such a moment, making my June '08 mammog appt. How dare I dream? What audacity to plan so far in advance! Then, I said, I'm putting it on my calendar, knowing that if it is on my calendar, I will be there no matter what. Just keep shoving those ugly moments away and savor The Now, which happiness dwells... LOVE Y'ALL always, ANDI

SoCalGal
06-27-2007, 09:54 AM
ANDI...
I want to be YOU. That's all I can say after reading your post. I'm going to read your words everyday until I get it right.

I've got to get rid of more negativity and call into my life more of the things I desire and deserve. I know I can make it happen.

Thanks for a great post!
Flori

Andrea Barnett Budin
06-27-2007, 04:02 PM
YES, FLORI! I *KNOW* YOU CAN DO IT. BECAUSE I SENSE YOUR TRUE DESIRE TO OVERCOME YOUR GNARLY, SNARLY NEGATIVITY. You know it is not good for health. It is, in fact, hazardous to your health. So, in accordance w/doing every thing within your power to be well and healthy, to be joyful and in sync with the Universe. That's precisely what I wish for every woman on this board! Much loving energy being sent you way, Flori. Do you *feel* it?! (Wanted to insert a smiley face here. HOW DO YOU DO THAT, ANYWAY?) ANDI

SoCalGal
06-27-2007, 09:38 PM
When you use the colon: combined with the close parenthesis), the site automatically converts it into a smiley face:) This does not happen until you hit reply (magic).

hutchibk
06-27-2007, 09:44 PM
Cool - I didn't know that, Flori, thanks! :)

SoCalGal
06-27-2007, 09:48 PM
Today I painted a small sign, which I hung on my front door. (I was inspired by what Andi BB wrote to us).
It reads:

W E L C O M E
Be Present (I am here)
Be Positive (I have faith)
Be Powerful (I have strength)
Breathe
and
Believe

SoCalGal
06-27-2007, 09:49 PM
Hey Brenda - I also sent emails to Oprah's producers today. I think someone will contact me this summer!

Andrea Barnett Budin
06-28-2007, 05:13 AM
Let me give this a whirl here. Your post made me happy, Flori! :) :) Okay. That did not work. Simple. For morons. Maybe the REPLY (magic) part of the instructions allude me. Oh, Flori. Help a mechanically/technologically challenged gal.

If you look sideways -- the colon and end parenthesis look a little like a smiley face. :) Where the heck is REPLY (magic)?????????????????

Going in for scans now. Drank my drink. It's raining. But my heart is smiling cause of your NEW SIGN! Love... ANDI :)

Andrea Barnett Budin
06-28-2007, 05:15 AM
I'LL BE DARNED! Like magic. :) It appeared! :) :) :) I'm giddy w/joy. Will think of your smiley face tip while WAITING for my scans...

Andrea Barnett Budin
06-28-2007, 04:31 PM
Had my CT scans this AM. NO EVIDENCE OF METASTIC DISEASE. STABLE. Thank you God. Thank you body. Thank you mind. All systems working together... :)

I did NOT use my port for contrast, as you wise women, and my chemo nurses and my onc just told me, in passing. After all these yrs of scanning regularly since '98. Yes, they always used to saline flushes and heplock. No, I never had a problem. But I will never take a chance again with my precious port. So they stabbed me a few times, and dug and dug, to thread it in. Not horrible. I have one good arm, as most of us and one good vein in the middle of my wrist, which ALL wince at approaching, hating to do as I plead. They all start off w/the juicy looking one and become so dismayed when it fails. They pump saline in to be sure it's working and IT'S NOT. I get a big bubble of saline. They call for reinforcements. Next. Please use my wrist. I know you think it hurts the most, but the hand hurts more. I promise you. They gave me a nice bandage cuff to go home with. And, in accordance with my plea for a SAME DAY REPORT, I got the results in 1 1/2 hrs (rather than waiting most of the day). They spoil me. I can't take the waiting. And Paul is worse than I am. He gets so nervous EVERY time. Still. Bless his heart. Wishing you all good reports, health and wellness, joy and harmony. With much love my sweet Soul Sisters... ANDI :)

lilyecuadorian
06-28-2007, 06:57 PM
congratulations i soo happy for you .....mean it

Andrea Barnett Budin
06-28-2007, 07:30 PM
Wishing you all I wish for myself! Really and truly... ANDI

hutchibk
06-28-2007, 07:49 PM
Andi - I too have the 'vein in my wrist or hand' conversation with any new tech who needs to get some blood outta me... many of them spend unnecssary time trying to convince me that it is too painful and that they should go into the traditional elbow bend area. They are terrified that they will hurt me. I have spent many a moment convincing them that on me it is the other way around, I don't really feel it in my hand or wrist, but it hurts like heck in my elbow bend. One tech I argued and argued with because she refused my way (for CT contrast) and then after I agreed to her way to prove the point, she blew the vein and I moaned in pain - so she had to get her supervisor to access my hand which I barely felt. I had the biggest bruise for a couple of weeks... but she promised to never question another patient who wanted it in the hand. I should know, we have been doing this for almost 4 years now!

SoCalGal
06-29-2007, 07:35 AM
Andi,

Thanks for sharing your fantastic news. Made my day and it's only 7:30 in the morning...I have my pet on 3rd of July. My stomache flips just typing the words. You'd think I'd be better at this after 11 years of practice.

Have a wonderful day today - bask in the good news, you certainly deserve it!
Flori

suzan w
06-29-2007, 08:23 AM
This has been a great topic! I just got back from a week vacation and found a "lump" (pimple) right between my mastectomy scars. Because I had been on an airplane from one end of the country to the other and back again I had an " achy node" (stiff neck). Convinced it was the worst...It took a call to my oncologist who told me it was nothing and she will see me in 2 weeks at our regular appointment AND finally a visit to my PCP who told me that it was indeed a pimple, and I had a stiff neck from sitting up all funky on the airplane. Ibuprofin (now, why didn't I think of that??!!) worked on the neck and the pimple was almost gone by the time I got to the doctor's office. That's why I love this topic, because YOU all GET IT!! (:) trying the smiley face insert! NOTHING is NORMAL anymore! I worry about everything! I am a very spiritual person, was before my diagnosis-thank goodness!!! Sometimes, however, the creeping worries can overshadow all my good intentions, no matter how hard I try. Yet, here I am, in my "new normal"...trying not to waste a moment! Every time I log onto this site it is such an upper visiting with everyone! Thanks!!!

Andrea Barnett Budin
06-29-2007, 12:47 PM
No matter who you are, new to bc, or a veteran warrior -- the test that could/might/please God won't looms large. Keep thinking I'd do better, I don't. Except this time, when I was busy being scared for Paul and forgot about being scared myself, for myself. Well, that isn't good. Diversion IS good, but by scrubbing a stained sink, writing, painting, whatever, NOT obsessing about a loved ones' saga of woes. But we do what we must, and surprise ourselves how strong we can be! And that alone is EMPOWERING, which is UPLIFTING...!

Yes, a pimple on my chest/declotte area freaks me out. I think, I never had skin mets. WHAT DO SKIN METS LOOK LIKE/FEEL LIKE? I don't think I want to know. Yet, of course, I do. To be adequately prepared, to be vigilant while seeking not to become crazed. I have a few teeny weeny little things that *normal* people wouldn't think twice about. On my legs for the most part, I think. I have "dermatologist" on a list, to get to once past Paul's orthopedist, cardiologist, urologist, internist and maybe neurologist. We have twin endocrinologist appts 7/18. Derma guy will have to wait. Supposed to go to Calif late July for littlest grandson's 1st Bday. Taking one day at a time, what w/Paul's issues and all. Guess you all know about taking ONE DAY AT A TIME. Too overwhelming to look too far ahead. The One Day Plan works wonderfully. But can't give my daughter any promises, which she totally understands. Pamela was supposed to come back to Boca w/us and 2 little guys, leaving Tom to his conference to join us when done. Now, I can't say just yet. Being a "planner" by nature has to be shelved for the moment.

Flori, good luck 7/3! Will think of you with :) smiley face, which is a trick you taught me. Love it! :) Habit forming! Just drew a blank on your name (w/the pimple and the stiff neck and the great sense of humor and...) Afraid to click elsewhere and lose this post. Can't seem to COPY it, so will have to think of you and your pretty face and blond hair and check after submitting. I apologize. I love all my sweet Soul Sisters who all get it!! Every one of you. This site is like HOME. Sending loving energy to all... ANDI Seeking to be *normal* when nothing else is, is quite the daunting challenge, eh?

Andrea Barnett Budin
06-29-2007, 12:53 PM
I ACTUALLY WAS THINKING "s" AND EVEN SUSAN, but was scared of being wrong. :) ANDI BB

Andrea Barnett Budin
06-29-2007, 12:58 PM
Precisely correct. And as I agreed to allow Joe the tech to hit the bend in the elbow, KNOWING he would soon know what I already know, I had a momentary pang of anger w/myself for causing myself pain to prove I was right. I just was so full of POSITIVE ENERGY, I was too weak to argue, which makes absolutely NO sense. Ann the 30 yr veteran nurse ooohhhhed and ohnoed a lot, but I kept urging her on. MAYBE I taught them something -- for the next person who knows their own body! :) WITH LOVE AND COMPLETE COMMISSERATION in this semi-minor plight of finding a good vein (compared to all the rest, that is...), ANDI

hutchibk
06-29-2007, 08:19 PM
:) :) :) :)

Just having a good day and wanted to share a few smiles!

MAB1943
09-20-2007, 02:58 PM
to all in this support group. Thank you all for the important info, I searched so long to find a site that could relate and be informative about herceptin, and Thank God I found it. I just want to tell you about myself then my philosophy on my cancer.
I started in 1995 w/microcalcifications and for 10 years every year I would get the same report, no cancer, benign condition, recommend annual mammo's. Well in 2006, I started to hurt in my right boob and nipple. I was just past menopause, so I wasn't sure that what I was feeling was part of the hormones still kicking around. Some told me to go for an exam early so I made the apt and told the dr. what I felt, he ordered a mamo and after exam told me he felt nothing and go get fitted for larger bra. He felt that I had soft tissue there and the bra was pushing my nipple in. SO I went for the mammo and got fitted for new bras. I still felt the discomfort and then I started to notice my nipple was sinking. I got the result of the mamo which no change from all the other years, but now I noticed a tiny drop of blood inside my bra, I immediately made an apt with a surgeon who told me he was going to do a nipple biopsy right away. The biop was done Aug 30 and he called me that I had DCIS. Stage 0 he told me, I did NOT have cancer. HUH??? Anyway thank God he decided to send me to a cancer hospital for 2nd opinion. They read the same biopsy smears and the same mammogram film and found that I did have a 5cm cluster, I went for a stero tactical biop and it confirmed invasive breast cancer. I was to have a mastectomy in Nov and got it done without any complications and no lymph involvement. The biop from the mastec came back that I had HER2 NEU 3+++ and er and pr negative my stage was 1 and I was class 3 FISH. I went in with a positive attitude and no one could believe how good I was doing. I met my onc dr. and she told me because of
the grade 3 and invasive cancer, DCIS and paget's of the nipple, and being her 3+ and er/pr neg I would have to have 6 months of chemo, started 12/15/06 @ 3 wk intervals ac/dc and taxol then taxol and herceptin every week for 6 weeks, and now I am on only herceptin every 3 weeks until end of dec. Well I skated t hrough with the normal but not excessive side effects the most troubling being the steroids they gave me, I didn't do well on them at all. Bloating/gastric distress/enlarged liver/had to be put on insulin/neuropathy and sinus infections and insomnia. I was one sick pup, but felt not as bad as some people. I continue to have a good attitude, but this is the problem. Now that I am done the chemo and am almost done the herceptin, I feel
anxious/jittery/nervous and have a terrible time sleeping. I eat good, but feel very tired. My sugar is normal with insulin, but I now don't have such a good attitude anymore. This doesn't compute in my mind. Everyone and everything bothers me more than ususal. I don't want to talk to one of my friends who has NOT been supportive in the way I felt she should be, because she just doesn't think I am THAT sick. And she had a serious illness 2 years ago and was gravely ill, but not with cancer and she thinks that her and my illnesses are very simular. It was just as hard on her husband to deal with her illness as it is for mine to deal w/my mastectomy.
I don't like talking to her anymore and then I feel guilty about how I feel because I am sure she doesn't mean it the way I take it. I am grateful that I found this support group because you truly do understand where I am going and where I have been. And nobody else really does. I do have a very supportive husband, and best friend of 50 years and for them I thank God. But do you think it is normal for me to feel this way now that I am getting down to the end of the treatment.
I feel that I don't want to worry about my treatment or anything else because that is what I have a doctor for, and if there was anything to worry about she would tell me. Therefore, I will live my life day by day and I feel that I will not ever be me the way I was prior to bc, I can only be me the way I am now and in the future. Is that wrong?
Thank you for listening.
Mary

dhealey
09-20-2007, 03:35 PM
Mary, There is no back to norm the way you used to be before cancer. You now have to find a new norm. I got very depressed about a month ago because I too will be nearing the end of my treatment in Janurary. I feel nervous about the cancer coming back. People at work act like I am not sick either, I guess because I continued to work and do everything like I did before. This is not always good as I get very tired. The only one who understands is my husband. I can no longer tolerate petty little problems or trivial things at work or home. I have learned though to appreciate everyday and treat it like it may be my last. Live in the moment. It has taken me awhile to do this. I think when you are going through treatment it is easy the sail through it without really thinking about having the cancer because everyone is concerned about getting you better and you are so busy with doctor appointments and treatments. The next phase is the hard one learning to move on. I am still working on that one. One thing I have learned is don't be to hard on your self and learn how to say no to things that aren't pleasing to you. Best of luck!

Sandy in Silicon Valley
09-20-2007, 04:55 PM
Hi, Mary -

I sure do hear you - about your frustration with your misdiagnosis at the beginning, about being fed up with friends who bail or just aren't appropriate in response to your diagnosis and treatment and fears, about being thankful for the supports you do have, and about wanting to be present in where you are & what your health status is day to day.

The major way our responses are different (and every one of us is unique in how we deal with this) is that I'm a control freak of sorts, and I don't want to leave the future of my care in my oncologist's power, whatever my dx/tx status. But that's a minor issue, compared to the rest of our common experiences, I think.

In fact, two out of three of my daughters don't want to make any allowances for me because I have Stage IV cancer and am undergoing a panoply of treatments to maintain as much quality and quantity of life as I can. They're grown, and have their own lives, and if we're playing on different fields/ different teams for a while, oh well. Like you wrote, I've got to do what I've got to do. They can like it or lump it, but at this point, I'm not about to turn myself inside out to be the accomodating, accepting "mommy" they expect/want me to be.

About 6 months after my bcmets diagnosis, and the first round of treatments, I got very depressed, and pretty anti-social as well. It just seemed like nobody - including my husband, who is a good guy, but a geek & not very in touch with his or anybody else's feelings - could understand how I felt or encourage me to talk about what I wanted to discuss. Online support became a lifeline - in the threads that were brought up, many times I could read about someone going through, or feeling, something that I could genuinely relate to, plus I got a huge amount of information that I could actually understand - not medical jargon.

Unfortunately, after about 3 months of hiding out and being p.o.'d with everything and everyone, especially disliking my own NOT NORMAL self, I became very morose, and started imagining commiting suicide as an improvement on how lousy, lacking any enthusiasm, angry at the world, I felt most days. I imagined driving off an expressway overpass I traveled everyday coming home from work. That really scared me! I also wasn't sleeping well, woke up at 2-3am, wide awake and needing to get out of bed and do something - which left me extremely tired when I was at work.

So I searched around for a well-respected psychiatrist, got my anti-depressant meds (I'd been taking since about 7 years after my initial Stage II diagnosis) changed to something that was also anti-anxiety, and settled, very reluctantly, for the "new normal" that my life had become.

The psychiatrist taught me some useful self-hypnosis- type exercises to get more relaxed and sleepy, when I woke up before dawn, and most nights, I was able to fall back to sleep. Over time, I shed some old friends who just couldn't "get it", rediscovered others who'd never abandonned me - and if they seemed insensitive sometimes, I let them know. They may have kept at a safe distance, while I was in major funk mode, but they were willing to meet me half way, once I was feeling somewhat sociable again. I recently joined a live support group as well, and have made new friends who are dealing with metastasized breast cancer and the different issues that pop up when there's not even any hope of a "cure".

It sounds to me like you're making a steady adjustment to your own "new normal". Leaving your bc care in your doc's hands, if you trust her/him, is a great way to not have to think about having bc all the time.

Reading and writing to other women who've experienced one or another aspect of what you're going through (like on this and other support group forums) are also great ways to feel "normal" and validated. Maybe you'd like a "live" support group, if there's one in your locale.

Returning to engage with as many of the people, activities, and goals that you had before your dx can be another way to get on with living. If your treatment has left you with some limitations - even if it's about not having the patience to deal with insensitive people - then finding some new/ replacement friends, activities & goals may infuse more enthusiasm and enjoyment of day-to-day life into how you live.

A combination of strategies has helped me come to some self-awareness of what I need for me to function optimally, when the disease isn't front-and-center in my life. When tests and treatment are necessary, I give my "normal" activities over to dealing with whatever is necessary, knowing that's temporary.

I wish there were a list of all the different ways that different women have found to cope and regain a sense of themselves - then anyone struggling with identifying who she is and what she wants from life could pick and choose among the list, try out different suggestions, and move on. But I think that the list would be as broad and varied as the women represented on this forum, and that number of choices could easily get overwhelming.

Since your post indicates that you've already determined some of what you want and how you're going to get it, I think you're quite well along in finding out who you are, and how interesting and cool life can be, after a bc dx. Wishing you much success and satisfaction carrying on from here on out...

(((hugs)))
Sandy in Silicon Valley

BearMan52
09-20-2007, 06:23 PM
You all have just cracked me up with the smileys! Thank you...needed that...my wife is having a rough time on Xeloda/Tykerb...and not a lot of evidence that it's working. This is after a year of mets diagnosis and txs: Taxotere/Carbo/Herep; Navelbine/Hercep, now Xeloda/Tykerb...with Zometa throughout. Thanks too for the inspiration.
Barry
Care giver husband

tousled1
09-20-2007, 09:17 PM
Mary,

It is quite normal to feel the way you do. While you're going through your treatments you are kept so busy with doctor appointments, tests, etc that you really don't have much time to think about anything except fighting this disease. Now that you are coming to the end of treatment you have more time on your hands to think. Your "normal" after completion of your treatment will not be what your "normal" was before the beginning of your journey. I have found that I don't sweat the small stuff anymore, have little patience for some people, and just enjoy each day for the little things. Don't despair. If you feel you need medication to help you through this, don't hesitate to ask your doctor for either an antidepressant or an anti anxiety drug. I took antidepressants for 4 years after my son passed away from leukemia. I stopped taking them the year before I was diagnosed with breast cancer. I have not gone back to them but I do take an anti anxiety drug - Ativan which really helps. I also have a terrible time with sleeping -- started when I was on Herceptin only. I take Ambien CR for that. You can not live your life worry about cancer each and every day. There is so much in life to appreciate and it's up to you to find just what is going to make you happy now. If it means developing new friends and dropping old ones, or taking up a new hobby. the best advice I can give you is to make sure you do something nice just for yourself at least once a week. Hang in there it does get better!

Joy
09-21-2007, 07:56 AM
I SO KNOW HOW YOU FEEL. I often say to my family in tears that Ijust want to be normal. Whatever that is. Remember as we get older everyone has health issues and that becomes their normal. But Stage IV cancer is a crazy ride, crazier than most. You are inspirational and funny and gorgeous-so maybe you can never be normal becaue you are soo exceptional!

OzzieSue
09-22-2007, 04:19 PM
Having read all these posts it has inspired me to fight on to the next step of my journey. I received the email below today and thought it appropriate for this thread

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably coifed and shaved perfectly, even though he is legally blind, moved to a nursing home today. His wife of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready. As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

"I love it," he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

"Mr. Jones, you haven't seen the room; just wait." "That doesn't have anything to do with it," he replied. "Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged. It's how I arrange my mind. I already decided to love it."
"It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do."

"Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away, just for this time in my life."

Old age is like a bank account. You withdraw from what you've put in."

So, my advice to you would be to deposit a lot of happiness in the bank account of memories! Thank you for your part in filling my memory bank. I am still depositing."
Remember the five simple rules to be happy:

1. Free your heart from hatred.
2. Free your mind from worries.
3. Live! simply .
4. Give more.
5. Expect less.

hutchibk
09-22-2007, 10:20 PM
I LOVE that OzzieSue! Thanks for posting! May I share it with others.

Sherryg683
09-24-2007, 05:33 AM
OK, but this may sound bad but I eat what I want. I had a brownie for breakfast this morning, that means I won't have much of a lunch. I do this more for keeping the weight down than worrying about feeding the cancer. In my heart, I really don't think that what you eat or don't causes cancer. There are too many vegeterians, neutrionalists, etc..who have come down with cancer. Many people with almost zero fat content on their body who never ate sugar. I think cancer is genetic, mostly and bad luck the other half. I am not going to worry myself to death over every thing I put into my body. That's just not living. I don't eat a lot of fats but I never had because of the weight thing. I do take tumeric, grape seed and green tea extract consistantly. I have been NED almost 2 years now and am too supersitious to stop what I have been doing, including having that occaisional donut for breakfast and reeses peanut butter cup. Life's too short to do without the good things completely. I'd hate to have my dying wishes be "man I wish I would have had that last piece of cake"...sherryg

Sherryg683
09-24-2007, 05:35 AM
OK, but this may sound bad but I eat what I want. I had a brownie for breakfast this morning, that means I won't have much of a lunch. I do this more for keeping the weight down than worrying about feeding the cancer. In my heart, I really don't think that what you eat or don't causes cancer. There are too many vegeterians, neutrionalists, etc..who have come down with cancer. Many people with almost zero fat content on their body who never ate sugar. I think cancer is genetic, mostly and bad luck the other half. I am not going to worry myself to death over every thing I put into my body. That's just not living. I don't eat a lot of fats but I never had because of the weight thing. I do take tumeric, grape seed and green tea extract consistantly. I have been NED almost 2 years now and am too supersitious to stop what I have been doing, including having that occaisional donut for breakfast and reeses peanut butter cup. Life's too short to do without the good things completely. I'd hate to have my dying wishes be "man I wish I would have had that last piece of cake"...sherryg

tousled1
09-24-2007, 07:27 AM
Sherry,

I coiuldn't agree with you more! I also eat what I want, when I want. I do try and maintain a healthy diet but believe me I'm not fanatical about it. The way I look at it I'm now Stage IV and I can do whatever I want. A few sweets here and there are not going to upset the apple cart.

MAB1943
09-25-2007, 06:10 PM
thank you so much for the wise words. it really does help to know there are others who do understand.
good luck and God Bless you as you battle this malady.
Mary

MAB1943
09-25-2007, 06:36 PM
Sounds like we really have a lot in common in our thinking. Never thought I'd feel that at my age I would be eliminating those I felt were so close to me, but looks like when I made up my mind to fight the battle, it meant colateral damage too. If people don't understand then it is because they don't wish to understand. It is a hard nut to break but oh well. Ah yes, bc is a lesson in itself. I wish all of you who are going through this event, peace. Sometimes you just have to go it on your own. I have great faith in my onc probably because she herself is a bc survivor, and I truly believe she understands what I am going through. Thank God my husband has not disappointed me too but I wouldn't have expected him to be any different. I believe I will be on this site for quite a time yet as I work my way through it all. I was informed by my onc dr on Friday that I will be on herceptin until the end of March. I will stay positive.
Mary

Vanessa
09-26-2007, 08:58 PM
I know many of you try to eat well and so do I, but one problem I have is being very sensitive to the steriods. Even when I try my best to eat well, I have very strong cravings for sweets, Cheetos and other non-nutrious foods. I have gained so much weight since I started chemo and when I was on break from chemo I began to lose it very fast, but gained it all back when I started taking them again. Does anyone else have these tremendous cravings and how do you keep from gaining so much weight. I feel like the steroids have so much control over my life and I feel so weak. Any suggestions?

tousled1
09-26-2007, 09:01 PM
Vanessa,

I get the cravings for the sweets with the Decadron and I just let my body tell me what it wants. I'm fortunate that my weight has remained stable so I'm not going to worry about it. I think we're supposed to be enjoying life and if eating some things that we know we shouldn't is enjoyable then do it. Don't sweat the small stuff. There are bigger battles to fight than gaining a few pounds.

Vanessa
09-26-2007, 09:08 PM
Thank you Kate for the reassurance and I think you are right. I just feel so uncomfortable. I gained 40 lbs during my first chemo, then lost 20. Gained 30 back when I started chemo again. I feel miserable, but my appetite just won't stop. Maybe I worry about my weight in lieu of worrying about my fate, because it does seem like the least of my worries. I hope you are feeling well these days and your treatment is going well.

dhealey
09-27-2007, 04:10 AM
Vanessa, Don't beat youself up about the weight gain. I think the stress of worrying over the weight gain is worse than gaining the weight. Stress can play such havac on our bodies. Eat the best way you can and don't worry about it. Concentrate on enjoying life and laugh alot. That I believe is the best way to defeat this disease.

MAB1943
09-27-2007, 03:32 PM
VANESSA, don't worry about the weight gain. You are going t hrough so much right now and the steroids are horrific. Treat yourself good and indulge yourself. If possible exercise even if it is only 10 minutes 3 times a day of walking. That may help, but I can tell you I was so miserable towards the end of my chemo w/the steroids I actually wound up having to get insulin, my sugars went over 400. My onc kept telling me it was the steroids and chemo and would go back down to normal, but my family dr put me on the insulin anyway. I am still on herceptin and my appetite is too good, but I refuse to worry about something that is out of my control, if I am hungry I eat, and I try to watch what i eat, but nobody knows what it is like unless they are going through it. You will get back to normal but it WILL take time, maybe over a year, but you can do it THEN. Mary