March 2009 Rads Group?

Hi Kristi!  My skin where the radiation was hasn't looked this good in forever.  lol  I never would have imagined that it would going thru what it did with the rads. 

Yes, I need to work on my diet.  I am a junk food junkie and know that it isn't good for me, but, I doubt I can totally quit.  I need to incorporate more fruits and vegetables for sure into my diet.  And yes, grapefruit juice is a no no with tamoxifen. 

Take care! 

 Jeanne

krist- I find that Susan Love's page has a lot of great answers on the food issues.  I just put "food" into their search engine and got a bunch of stuff like

A new study suggests that eating grapefruit, which increases blood levels of estrogen, could increase breast cancer risk. 

Which... concerns me because I ate grapefruit every morning for years until 2006 when I got reflux disease and had to cut out all citrus for the acid.

Without copying the whole article from Susan Love- including parts where there is a recommendation that all hormone drugs for Breast Cancer patient  be labeled with a warning regarding grapefrut... here's her conclusion:

Given the media attention this study has received, it makes sense that women would be asking questions such as these. But as Dr. Monroe noted, this is the first study done on this topic and, until the findings are replicated, I don’t think that postmenopausal women should foreswear grapefruit forever. That said, if you do eat a lot of grapefruit, especially if you are taking hormone therapy to treat menopausal symptoms or are at increased risk for breast cancer, you might want to replace some of that grapefruit with oranges or other citrus fruit. 

HTH  

Oh and I drank a ton of soy milk in early 2008 and gave myself a cyst.  6 months later they detected my breast cancer.

This stuff is really truly annoying... if they had any idea that these "healthy" foods would raise the risk of breast cancer... I am about to say I wish I had known but I think I did read some about this, then I read the opposing viewpoints and figured it was hype.  :::sigh:::

I just last month had a really revolting exchange with a diet cookbook author (The Engine 2 diet).  I asked if there was soy in the recipes and he wrote back that yes, there was but that soy wasn't bad for breast cancer patients and he went on and on.  I said thank you for the information about the soy in your recipes, but you are really out of line forcing his opinon about soy being safe to  person with breast cancer, and if he really wanted to help breast cancer patients he should write another book with recipes that don't use soy.  Then I blocked his email because he really upset me.  He's really nuts, he wrote me from another address with an attachment from the "Wellness Institute", I guess to prove his point, but I didn't read it, as I told him I would not.  I wrote him back again and said he had to be a really sick person to continue to push his ideas on me, knowing I had breast cancer, after I had told him specifically not to write to me again, and i attached the information I had found from several legitimate sources (NIH, ACS, Susan Love etc) that says basically, we don't know if soy is good or bad for breast cancer patients, they are currently doing real studies to find out.  Until then, my view is that this whole breast cancer treatment is about gambling and percentages, I don't need to add any possible risk.

My point is that people get nuts on the soy issue.  He was all about these "2 factions" that were fighting about it... and i am sure there are, maybe the people who produce soy against some competing product.  They are like soy zealots, its nuts.  I'm sticking to hard data, and since there is none yet, I'll pass on the soy.

I have to pass on the grapefruit anyway from the acid reflux. 

I've stopped using the lotions. My skin feels normal. It may help that I never burned much - just a bit of 1st degree burn around my SNB scar.

Rachel, I have read that about 10% of MS have paranoid psychosis, though it seems to be rather controversial whether MS causes it. It seems logical to me that the neurological damage of it could sometimes do that. My mom had MS too and for several years before her first physcial symptom, she had paranoid episodes. I think she was on some drug to prevent that but sometimes would stop taking it. Fortunately, she was never physcially abusive but it still was embarassing sometimes and occasionally frightening.

Once my little sister and I were out shopping with her and she decided that we couldn't go back home. She stopped at the bank to get money and at AAA to get maps and a triptik. Then we left town on a road trip for all summer. I remember stopping at a JC Penny in Las Vegas to buy suitcases, some clothes and some enamaled metal plates, bowls and mugs so we could have cereal for breakfast and peanut butter and jelly sandwiches for lunch. It's odd but it was a great trip that I would never have gone on if she was totally sane because my father hated to travel. It was also odd that she could be paranoid worrying about whether we were being followed, making lists of "them", etc. but still could enjoy talking to people we met along the way or would talk about how nice the person was who gave us directions. She may have been on a paranoid trip to escape, but we stopped at any cultural place along the way for the educational experience. We went all the way from LA to Boston. Education and books were very important to her.

When I was approaching the age that she died, I had a couple of dreams where I would trip on a step because my leg wasn't responding. There was a step from our garage into the house and tripping on that was her first physical symptom of MS.

Wow!!!!!  I had a lot of reading to do to catch up on everyone's posts!  So good to hear that everyone is well.  It's amazing how often I think of this little March group and just pray every night that we will all remain cancer free!!!!!

About the question of eating better foods:  I think about it a lot!  About 20 years ago, I lost about 125 pounds.  I did it all wrong --- used laxatives, starved myself by eating under 600 calories a day, etc., etc.  But I did it.  A few years later life changed and the stress caused me to gradually gain it all back.  The thought of dieting is probably more stressful to me now than the thoughts of dying of cancer.  Don't know why.  Just can't seem to get a grip on the dieting thing.  The most discouraging part is that I probably eat less than half of what I used to eat.  But I'm now 61 years old, went through menopause, so the decrease in my food intake hasn't helped the weight problem a bit.  I feel like I would have to eat birdseed and cardboard to lose a pound!  I know all about good nutrition -- could probably teach classes in it.  Know all about all the diets.  Tried Weight Watchers, Jenny Craig, all the drinks and shakes and bars, etc. 

My breadmaker died last week!  I'm addicted to homemade bread.  Wouldn't you know, my sister bought me a new one!!!!!!  My all time favorite thing is pizza dough, rubbed with olive oil, spinkled with italian seasonings, a little cheese, and baked in the oven!  Forget all other food --- that is the food of Heaven, gals!!!!!

nelia- agreed on the pizza !!!!!!  you got me salivating!!!

I have a question for all of you:   When (or EVER) will I be able to say I HAD cancer instead of I HAVE cancer?????  Am I really DONE????  Is it Gone now?  Am I cancer free?????

Jeanne, it's still cut it out, poison it out, and burn it out!  Yes, we have earlier detection, pinpoint radiation, and like you said, anti nausea stuff.  But it still boils down to find it, cut it, burn it, poison it, and lots of prayers!

Rachel...You make some very good points about the silent killer.  Another good reason to get rid of the ovaries.  The lady I met at the wine bar had asked her Doctor if she could have a PET scan since it had been eight years of BC free.  That's how it was found.  She didn't believe the Drs when they first told her due to the Oophra. 

Tamox in rare cases can cause Ovarian cancer that's what I meant by mutating cells.  Yes I meant AIs.  I thought the same thing about tamox until I meant with the onco and he agreed that I could continue the tamox.  From my understanding, Tamox blocks the uptake of estragine but the AI's prevent you from making it.  (Please correct me if I wrong)  The Tamox has fewer SEs as well.  My SIL did go back to the Tamox and feels great.

Also Rachel....my aunt died for MS and lost it the last year of her life.  My mom still feels horrible about the way she kicked her and her other sister out of her life.  I can't wait to tell them that this maybe a common side effect to the illness.  I might make them feel better.

Jeanne....to answer your question from many posts ago,  we are slowly changing the way we eat.  I'm not going to try to fool myself to think that I can turn the book and change my life over night but we are making great strides at home.  Primarily fruits veggies and high protein.  Wine is going to be very difficult to cut back on.

Nelia....Love pizza.  I also have to catch myself when start to say I have cancer.  Strange feeling isn't it?  I almost forgot to tell you....thank you for mentioning LuLu.com.  When I'm finished with my blog I'm going to have is printed in a book for my family and some friends.  I need to find someone to edit it first and change a few things so it reads more like a diary.   Does anyone know where I would find an editor? It'll cost some money but I think it will be worth it.  It's highly likely that our daughters have the breast cancer gene so I think they'll appreciate it some day.

I'm not sure if I told you guys about that or not but my husbands sisters have all tested positive for the BRACA 2 gene.  No they won't get it from my side but from his.  We will start genetic testing as soon as we get their life insurance policies in order.

OMG this was almost as long as one of yours Rachel.

Renee, what you say makes me want to ask for an ooph too.  And you bouncing back so fast (your surgery was outpatient on Saturday????) really makes it attractive.  I am going to ask.

As your friend asked for the PET scan- brilliant chick, saved her own life.  We really have to be our own advocates. I asked for one after surgery because I couldn't understand the need for Tamoxifen and was not going to take it. Then I got a clue  But I am happy I got the PET/CT scan anyway.

Now I am beginning to thing there is some link between MS and cancer.

Also like you say, seeing all these women with MS who kicked loved ones out of their lives does start to make some kind of sense of it.  I am so happy it turned out to maybe help your mom and sister

You know more than I do about how Tamox and AIs work

You probably know the usual drill about shopping a book to publishers, and therefore getting an editor, I know that was my plan working my book (not about breast cancer) and will be when I start writing seriously again.  I am probably going to attend a class reunion (oy) on June 27, one of my classmates is an editor.  I will ask her if she will or knows how to find an editor for your book. 

Hey- about the long posts... I don't have a breast cancer blog! This is IT! :P  

This is my youngest daugter and her boyfriend.  We're giving him a college graduation party this weekend. Not the best timing for my surgery.  I can't wait.  I love to entertain.

" mce_src="" alt="" border="" hspace="" vspace="" width="" height="" align="" />

Renee and Nelia, I will definitely buy your books!

Renee- all writers are insecure.  I think you can feel safe that you are accurate, but spelling grammar is another story.  For that maybe you don't need so much an editor as a proofreader? All writers need someone, or more than one person to proofread their writings.

And what you are saying about MS just makes more and more sense.  My mother's family was also dysfunctional.  Her sister became a shrink and diagnostician, she was the only one my mother told about the MS.  It was a secret until she couldn't hide it any more- at age 55.

What a happy, handsome couple!  So they bowl?  

Oh and I have a blog, or more than one, but just not about breast cancer.  I am not ready to go public with my breast cancer yet.   I have 1500 members on email lists I run about cars, my web page about cars has 140K hits, my book will be about the cars... i guess i am compartmentalizing.  You know its so frustrating dealing with non-cancer friends who mean well.  I came here to learn about RADs and just kinda fell in love with everyone.  Then you guys started saying you liked my posts so... you got stuck with me here!

Renee, I think a blog is a great way to get the meat of your book going.  It gives some kind of order to things, you remember your feelings, fears, disappointments better, etc.  Have you noticed as we all come to the end of this journey that we tend to forget all the emotions along the way?  Mine all seem to be homoginized into one big clump of of one feeling --- where they used to be individual feelings of fear, disappointment, anger, sadness, aloneness, etc., etc.  I know if I ever get to the writing of a book, I will have to fill in a lot of that -- more than what is in my blog.  But at least I will be able to find where it all belongs.  Chemo was the worst for me.  I really didn't think I'd make it through that ordeal.  I wanted to quit so badly, but my sister kept me going, thank God. 

I think anyone who knows a good book from a bad book could be an "editor" for you.  And sometimes, it's just the grammar that might need fixing.  I know when I'm writing on my blog, I'm not thinking about sentences, paragraphs, correct tenses, etc.  It would all have to be polished up.

You can do it!   Just don't leave anything out!

I don't want to do this to sell books, I want something for my kids to have that's not in a spiral binder that they'll toss in the garbage when I die. It's all about the package. The are thousands of books about cancer so I know mine would be just like everyone else's.  However, how cool would it be to have a bound book with your name on it.  My mom would think it was the coolest thing that had ever happened to her.  Little does she know that anyone can publish a book on line.  It's pretty cool.

My DH's sister did a photo book this way when his dad died.  It looks like a real book.

I also don't want to write it like a book but as a blog minus the personalized information.  There is one that I know of that was done like this it's Cancergiggles.com.  It's really funny but sad.  I have yet to buy the book.

Nelia...love the poem.  I want to see one you wrote.  Didn't you say you wrote poetry?