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Old 08-23-2005, 10:35 PM   #1
Lisa
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Just getting a couple of things off my lopsided chest...

It seems that the past couple of weeks I've been inundated everywhere I turn with articles/advice about bc. I feel like I'm not exercising enough, am I taking the "right" supplements, are they helping, would other supplements be better, could my side effects turn into something more, is this new combo going to work for me, etc., etc., etc. Every conversation with everyone I meet turns to cancer. (My bald head is probably to blame.)

Maybe it's just me, but I'm starting to feel overwhelmed. Hard to put a finger on the exact emotion. Anybody else feeling this?

Maybe it's because Mercury (the communicator) is in retrograde whatever that means!

Love and light,

Lisa
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Old 08-24-2005, 04:50 AM   #2
*_IRENE FROM TAMPA_*
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My dear Lisa -

I know exactly how you feel and I have been riding this roller coaster from hell for the last 9 1/2 years now and still go into those modes once in awhile. I have also just had another recurrence and started on chemo again - my hair is gone, again - I am on the search for the perfect little hat,scarf,wig, whatever. I'll get over that ------

If I get one too many cramps in my legs, I start searching the net for diseases to be sure this has not turned into something else. For a while there I thought I might have muscular dystropy since the muscle's in my legs were cramping so much and felt weak. I got over that -----

I have probably tried every supplement my nutritionist has to offer because I am always reading up on something which might just help. Aside from this darn cancer, I am a pretty healthy women of 59 years. So at present I am supplementing with a very good multi-vitamin and Omega 3. Got over that one too ------

When my mind starts going into overdrive - I start redoing things in my home, thinking "I have to get this done before I run out of time" -- Well I have gotten quite a few things "done" in the last few years and still planning on doing many more things. I don't know if I will get over this one since I love doing new things to the house/yard. Good therapy for my mind.

One thing about this cancer, It sure puts us in touch with alot of emotions we probably did not even know we had. But if you dig down deep enough you will find that one that we all have, and that is the one to SURVIVE and be STRONG.

It's a heck of a ride Lisa, but know that you are not alone on the ups and downs. Anytime you want to "just talk" - I am a great listener.

Take care

Irene
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Old 08-24-2005, 05:07 AM   #3
sassy
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Lisa,

Sometimes my lopsided chest feels a little heavy too and I have to do what you always share--look for the love and light. You've been on this ride much longer than I, so you know the ups and downs even better than I do. At times I have to quit living the cancer and live my life. Look for the joy, have Faith and I hope you have a great day.

Sassy
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Old 08-24-2005, 05:34 AM   #4
Cindy H.
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Yes, I get overwhemed....I started this adventure almost 3 years ago as stage IV, have never been NED, am lopsided, been bald 4 times (counting now), have had just about all of the chemo there is, had a craniotomy in June, been on steroids since June (tapering SLOWLY, next week is my last week), had gammaknife in July, am currently on Abraxane and keeping my fingers crossed. I have to wait until November to get my MRI to see whats going on in my head and scans to see if the Abraxane is working.

In the meantime, My husband and I took a trip to Paris in April and plan to go back next April. I've gone to Disneyworld 3 times with my son, took my son to college last week, had bunches of visits with my family, have continued to work, exercise, eat right, take my supplements, and just enjoy life. Attitude is everything...it sure helps the immune system.

Cancer does not own me. I will never give in and never give up! Keep the faith and hang in there.

Cindy
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Old 08-24-2005, 06:32 AM   #5
eric
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Definitely! There's a lot at stake and I worry most about supplements. We rely on our doctors to know everything, yet we recognize that there's still many questions regarding this disease. Add that to the fact that unless the doc specializes just in bc then it's virtually impossible for him/her to keep up with all of the information. As a result, we (I) delve into areas that we are not really trained for. I know this brings up a good deal of doubt and anxiety for me and I wonder if it has the same effect on you and others as well. We SOOO badly want to make the right decisions, yet much of it is based on trust and hunches.

I'm nervous that Caryn isn't on any special supplements (for fear of negative implications) but I do feel good that she's on the UW vaccine in addition to the herceptin. I forward info that I like to her doctor than trust him to make the right decision. It didn't appear to payoff during her adjuvant treatment but I try not to look back. I tell myself that we all made the best decision we could based on the info that we had, and that it wasn't for a lack of effort or concern. Unfortunately, this is not yet an exact science!

Lisa, sorry for rambling but I hope it helps to know that you're not alone.

Warmest regards,
Eric
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Old 08-24-2005, 07:03 AM   #6
*_Cathy_*
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Dear Lisa, I worry too because of the supplements. I only take a multivitamin and B6 for hand foot syndrome. What do you take?
It definetely would attract attention to me if I didn't wear a wig or hat. Maybe you would like to try going out with one of them on.Sometimes we really need a break from talking about it and educating others.Just go out and do something you love to do without having to think and talk about the disease. Maybe we give it too much power anyway. Go to the movies, the mall, the beach, church, etc. I went down the shore for three days and I didn't think of my illness once. It was such a blessing.Another thing that really helped me was to develop my faith and prayer life. I don't think I would have done it to this degree if I didn't have this disease.(If you want any ideas on this, just let me know.) You look like such a fun and cool girl. Remember how beautiful and wonderful you are and that you are a gift to so many people, especially your family and all of us! God Bless You, Cathy
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Old 08-24-2005, 07:47 AM   #7
Vi
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Lisa:

"Every conversation with everyone I meet turns to cancer. "

I know people mean well, but it is hard when the conversation turns to cancer. Remarks like "Wow, you look good, you wouldn't know you have cancer,"are not meant to be hurtful, but they zing sometimes.

I believe in the "gestalt" philosophy -- the sum being more than any one part. Cancer is a part of us and at any given time can consume most of us emotionally and physically. But, each part of who we are hasn't gone anywhere -- we have the same spirt, personality, drive, focus, love, etc., although tempered by this new component called cancer.

These different aspects that make us unique are wholly a part and partly a whole of our total being. And we are so much more than just our cancer.

So I guess what I'm trying to say to you is that people become fixated on just one part when they speak that way. I just tell people I'm doing good, not borrowing trouble, and getting on with my life.

You are such an inspiration to this board and I value your input.

Be Well.
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Old 08-24-2005, 08:11 AM   #8
Pam P
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Lisa -- Your thoughts ring true for me too. Sometimes it seems that wherever I turn I can't get away from the cancer - TV, newspaper, a novel, movie, friends --- and my own mind.

Supplements? I don't know what to do about them since I feel uninformed & my onc. only recommends a good multi vitamin, so that's what I do.

Friends conversations? Sometimes it's worse when they don't acknowledge it, sometimes it's worse when they try to be too optimistic "everything's fine". And other times it's worse when I get "the look" of total concern, gloom & doom.

If this is our "new normal" then I'm glad I have all of you here on this site to help us all cope and understand.
Pam
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Old 08-24-2005, 08:19 AM   #9
Tom
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Dear Lisa,

You have touched on an interesting point, and one that struck me the other day at the moment I woke up from a long and restless night. Less than a minute after I opened my eyes, my mind began to race. It occurred to me that my Mom and I had spent the whole summer doing nothing but racing back and forth between doctors, radiation treatments, MRIs, bone scans, and Herceptin infusions. Our lives had become totally consumed by this disease. Logging onto the computer late at night always turned from shopping for a good book on Amazon.com, to three hours of browsing the latest clinical trials and pure research abstracts from one of my hundreds of favorite university websites. Even a brief getaway trip south to Virginia, turned into a side trip to visit a cousin on his death bed with lung cancer.

Turning on the television is no escape either, as I'm sure you know. It seems that everyone in the world is beiong diagnosed with some form of cancer these days. I sometimes feel surrounded by death and illness.

Part of me wants to get on a cruise ship and leave for two weeks to the middle of nowhere. Of course, that isn't safe either, as passengers seem to be disappearing at ports of call, or find themselves being assaulted and thrown over the rail.

When it all seems to be too much for me, I make myself a glass of cold chocolate milk, sit back in the recliner, and watch the cat hide under the couch, waiting to smack the dog in the behind with a sharp paw on the way by. Try to take little moments like that as a five minute respite from your battle. Some of the simplest things can be so distracting at times.

As my Mom and I sat on the back deck of my cousin's house on the Eastern Shore of Virginia watching the last throes of a tremendous summer thunderstorm, the clouds and lightning moved out over the water, then disappeared. Much to my surprise, and delight, the sky cleared, and the most spectacular rainbow formed right in front of us. Both ends of the rainbow were visible where they seemed to touch the earth, and it was fat and bright, as if someone had been turned loose with a can of spray paint. It is hard to think of anything negative or stressfull at moments like that. My Mom sat and stared at it for almost twenty minutes, in awe of it's pure beauty.

They always say that one should choose their battles. Well, that applies to choosing when to worry as well. Try and take a moment now and then and do something absolutely mindless. Hang up a hummingbird feeder and watch these tiny creatures hanging in midair, in a blur of swirling wings, trying to get enough to eat to keep them alive for another day. You will not only be distracted for a bit, but be reminded of how amazing this world that God created really is. There is plenty of time to do your research reading and scour your body for signs of trouble. Don't spend every minute of the rest of your life here worrying yourself sick. And don't forget that stress weakens the immune system. Live a little and let your Creator do the worrying for a while. He won't disappoint you. He's in control, and will steer your ship through the shoals that threaten your journey. The bumper sticker from years ago says it all..."Smile-God Loves You".

Take Care,
Tom
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Old 08-24-2005, 08:57 AM   #10
Debs
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Yep totally and utterly - seems like I cant get away from it - somehow it always creeps into the conversation, tv, radio, media etc and I feel like saying here we go again but obviously I dont.

I do look well (though dont always feel it - have mets to my liver but due to treatment had chemo now on hecerptine, arimidex, zoladex) I am doing well. I have a disable badge as sometimes get very tired but hardly use it but one day I did and someone had a go at me saying they hope I never get seriously ill - hmmmm did I turn round and say I am - no just burst into tears how sad am I ah? as feel that I sholdn't really be using it even though my mac nurse gets really annoyed and says I should But such is life - and life is wonderful if I could just move those grey clouds aside!

Love and light to you

Love Debs
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Old 08-24-2005, 09:56 AM   #11
triciak
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What a tremendous outpouring of love and courage you all have expressed here! I am almost overwhelmed by all the feelings you have stirred up, and the admiration I feel for you all. It is almost worth all we go through just to get to know all of you. I am going to print off this whole section, all your posts, and read them over when I feel the need to be inspired. Lisa, you have a way of getting to people's hearts! Joe, what if you make a special permanent file where you can save things like this that are especially valuable to read over and over again. I have read several posts like this in the last few months that I would like to see made available to everyone---they are classics that newcomers ought to be able to read, too, and the posts get lost as new posts come along. To add just a little thought to all the profound things that have been said here: I made it a rule from my very first BCDX 20 years ago never to say to anyone, even if they asked "I have cancer." I've always been careful to say "I am fighting cancer." It's only semantics, but to me it made all the difference. It meant being proactive, not reactive, making me feel I was in charge, not the cancer! Another little thing: I remember back then feeling so useless. I had been working full time in a counseling practice with my husband, feeling very useful and needed. Then suddenly I was totally debilitated, not able to go to work. I complained to my doctor that I was useless, not able to work, really discouraged, and he said something to me I've never forgotten and have told others in the same situation. He said "You aren't useless! You are working harder right now, doing more important work, than you have ever done in your life. You are totally engaged in fighting for your life. Healing from an illness such as yours takes hard physical, mental and spiritual work!" I'll pass that along as my little contribution to the subject of this posting. Lisa, you are not only working hard , fighting hard for yourself, but you are adding immensely to all of us who "know" you on this website. that goes for all of the rest of you who posted here. I am grateful for your example and inspiration, and I know you touch many, many hearts. Hugs, Tricia
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Old 08-24-2005, 11:26 AM   #12
StephN
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Yes, everyone, it is often hard to "think outside the cancer box."
Our whole being get involved in this ongoing fight for our life.
We have to summon up new ways to fight the mental fatigue that research and dealing with all the information brings, the psychic fatigue that comes as we find we have to visit the prospect of our mortality head on, and physical fatigue that comes with the toxic drugs and treatment routine.
All this is BESIDES the normal daily life tasks we have to keep doing for ourselves and our families and friends. It is like we take on an ADDED life to live - and suddenly, so we have no time to get used to it.
No wonder this disease can take over as our energy wanes and the "new normal" takes over.

Two good ideas brought out above.
Tom said to get birdfeeders and watch the hummingbirds. I did just that last year, and got another bird bath and put it under a red leaf maple near the kitchen window. We always had a lot of birds, but nothing to draw them nearer to the large back windows where I can watch them more closely. I also put out some stale bread and the crumbs of the cereal boxes near the bird bath. The squirrels enjoy all that as well. But I try not to feed them - the neighbor puts out peanuts in the shells and they come over to eat or bury them in our property.
Mother Nature has a lot to offer us if we take the time and opportunity.

Tricia mentioned telling people that she is "fighting cancer" not "has cancer." This is the same thing I tell people: I have been fighting cancer for the past five years pretty intensely. That it is something chronic with me like my allergies and I have to take measure to keep it under control and monitor it for when it gets out of control. That I always try to work my way back and regain some stamina to go forward with my life. And this IS work. It is a life cycle that I accept as my lot in life now, and try to get in as much good fun and accomplish things between the treatment times.

If, as Lisa has, one has to stay on treatment and never get up past a certain energy level, that is an even more difficult problem. But don't let negative thoughts ruin your day, just acknowledge them and chase them away with some nice music or a walk in a lovely environment. Music can do a lot to lift me out of a "bad" space.
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Old 08-24-2005, 01:08 PM   #13
mts
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Hi Lisa,

I have mentioned this before, but when I look at you, I see me. You resemble me quite a bit. I always look for your posts because you always have something "real" to say...
I really understand feeling overwhelmed... frustrated and everything else. I love this website because it shows me I am not alone. Somedays I think of my cancer everytime I breathe. Its difficult. But you know, I am as proactive as possible and I feel in my heart I am doing everything I can.

When people ask me how I am doing (and I really don't want to get into it) I usually respond "My doc says I need a new kidney -would you be interested in getting tested?" They soon get the point and give me the "I understand you" face. If they don't get it, I feel a little bit of mischevious glee and it makes me laugh inside.

My mom died of parotid cancer. She NEVER wore a hat or wig. Some people could'nt help but stare; little kids wanted to touch her bald, shiny head; others commented on her beautiful skin ridges.

I have learned to accept this disease and I milk it every chance I get. I have become selfish (in a good way) and concentrate on my family. Screw anyone else that doesn't like what /who I am.

I see in everyone a bit of me -as a collective we are one, but individually we are our own universe.

Please hang in there! I value your input more than you think and truly appreciate your brain.

Warmly,
Maria
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Old 08-24-2005, 02:18 PM   #14
Margaret
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Hi Lisa,

Thanks so much for stimulating such inspiring words from so many people. I really appreciate all the wisdom. I just wanted to add my experience. Since being diagnosed four years ago, I learned how to 'stop and smell the roses' so to speak. I remember how I was living my life before cancer without 'really' feeling, seeing, smelling, hearing..... I was just busy 'doing' life the way I thought I was supposed to 'do' it. I was being a 'good' wife, mother, sister, daughter, friend........but I really lost who I was.

I am now grateful that I really can 'see' the flowers and 'hear' the birds! I'm grateful for every new day I'm given and I try to make the most of every breath. I don't know (no one knows) when I won't be given another breath, so I'm now determined to make the absolute most of every breath I'm given. I also know that some people can live for 'a hundred years' and never truly live a day, and other people can live 'a hundred years' in every day! I plan to 'expand' every moment I can with laughter and joy.

Thanks again for this great website!

Margaret
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Old 08-25-2005, 02:05 AM   #15
Lyn
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Overwhelmed, just when I thought I had enough doctors to visit, my heart specialist, which is brilliant after my heart failure 2 years ago and my LV is 57% after continuous Herceptin, I am in Australia and she is American and she is such a wonderful person, we were talking about allllll of my ailments and she is going to refer to me to yet another specialist, so I have my onc, my heart specialist, my orthopaedic specialist for collapsed shoulder, general physician, radiation specialist and now I am getting a specialist in connective tissue disorders, I no longer know what has caused what or what symptoms are from chemo or my worn out body and she would like me to take CQ10 to protect the heart from chemo, I already swallow about 40 pills a day, prescription, herabal and vitamins and washed down with an energy boosting drink. Each time I rearrange my dacron breast that always seems to be in the wrong place, the prothesis is toooo heavy for my shoulder, so I don't think I am ever going to be rid of the thought of BC, and everyone says I look so well so when they say how are you I say wonderful and keep going. My young 17 year old female friend of the family works part time in a super market to subsidise her studies and the customers say why are you so happy all the time, she says just look at me I have all my arms and legs what is there to complain about. But I notice that a lot of people seem to be rubbing me the wrong lately because they whinge about nothing and you think walk a day in my world, they certainly couldn't do a week, and sometimes I feel like I am made of glass and not present when they are supposed to be doing something for me as part of their job, and I don't mean the medical profession. Well I have added my 2 cents. Ihad a bone scan this morning and saw the heart specialist today and tomorrow I have to have my Herceptin because when I went on Tuesday, hooked up to the drip and no one could find the Herceptin, I have been having it for 3 years and no one knew where it came from, turns out the nurse I had a battle with last forgot to order it, lucky the nurses had been given a tune up and were very nice so, yet another week in the life of a BC victim, when shall I retire I am in my 8th year now and on borrowed time since I was supposed to last 2 years and all of my tests are NED, but we know that is not true.

Love & Hugs Lyn
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Old 08-25-2005, 03:09 AM   #16
Rhonda4
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Lyn,

Your statement of "But I notice that a lot of people seem to be rubbing me the wrong lately because they whinge about nothing and you think walk a day in my world, they certainly couldn't do a week, and sometimes I feel like I am made of glass and not present when they are supposed to be doing something for me as part of their job, and I don't mean the medical profession."

Being an underwriter for an insurance company I talk to agents all day...many of who complain. When I ask "Hows your day going" and they say "Lousy" they are caught off guard when I reply "Could it be worse?" many are like "Yea, I could be dead" so I reply "So it's not that bad" THAT usually stops their complaining.
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Old 08-25-2005, 09:19 AM   #17
sarahdalton
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Lisa, just looking at your photo, I see a warm, strong woman. reading your various emails I know you're also honest and pro-active. we all get depressed sometimes.
my cures: chocolate, books, books, books, music, dog walks, meals with friends, swimming.
supplements? yes, we're all confused. multi, 1500mg of calcium with D3, magnesium and co-enzyme 10 (supposedly for the heart) and folic acid because I like a glass of wine. Periodically throw in some others.
Tomorrow you'll feel like a different, happier person - look at all the on-line friends you have out there becasue of who you are.
stay strong
keep on shining brightly
Sarah
PS love the turban! you look great in red - what a good upbeat color.
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Old 08-25-2005, 11:59 AM   #18
Tom
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Dear Lisa,

I couldn't resist the urge to share with you one of our best kept secrets for curing the crazies/blues. Fire up the computer and go to www.seescandies.com. Order yourself an assortment box, or better yet, a box of the Bordeuxs. The dark chocolate is the best, but whatever floats your boat. When they come, put on some of your favorite music (something relaxing), take a glass of cold milk (preferably skim), the box of chocolates, and flop down in your most comfortable chair. Nibbling is fine, but going face down in the box works best for me. Don't come up for air until you're ready to bust. Trust me. This Little Piggie knows what he's talking about. Take care, and be sure to brush after the feast.

Tom
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Old 08-25-2005, 06:15 PM   #19
*_Celina_*
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Lisa,
I'm so happy you had so many wonderful responses. I found them uplifting...to know that you all can have such wonderful moments and days despite the battle you have to continually fight.
P.S. Tom...keep writing...you're good.....it was like a glimpse of Virginia!
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Old 08-26-2005, 01:50 PM   #20
Rach
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Lisa,

Really helps to know you are not alone, huh? I guess I am allowing myself to let other people make me feel like a freak when they stare or look once and then again and again!

Anyway, just wanted to say it does get depressing talking, thinking, dreaming cancer 24/7. So have a blast on your trip and try to put all your focus and energy into that!!! Take care.


In Him,
Rachel



P.S. It also wouldn't be a bad thing to take Tom's advice!! I may.
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