I just want to be normal

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