Sunday, April 7, 2013

Retreat

My husband said, "Did you know it's been a month since your last blog post?"  Nag nag.  But no, I hadn't realized that - time flies when you are having fun.

I also have a very sweet post started for you but until then, you'll have to take this even sweeter news:

I just had a  CT scan and it showed a 50% reduction in tumor burden.

I know, right?  We all thought I was not long for this world, and here I am, cancer retreating like the French in WWII.

The chemo I began in late January, Gemzar, was just about intolerable.  I didn't think it was working, and worse, it was hurting me with all that blood cell killing and all.  I knew I was not going to make it too long on that drug, and I didn't - after one dose reduction and a few more rounds that I was unable to finish,  we stopped it at the end of March.   My doctor said he'd put me on TDM1, but first, I needed a baseline scan.

I thought it was highly possible, based on all my symptoms, that my time was short and I wasn't going to make my goal - my son's high school graduation.

I do what all women do every morning.  You get up, you brush your teeth and hair, wash your face, you  look in the mirror and check for stray hairs, inspect your skin for new wrinkles, and of course, you check to see if your eyeballs have turned yellow from jaundice.

Surprisingly,  my eyeballs stayed white (okay, sort of white with pink lines) and so I knew I wasn't at end stages, but I was also freaking miserable as I wrote about in my last post.   I couldn't make it on that drug.  I figured that it wasn't working for me; I was declining.

I've been off the Gemzar for about 3 weeks, and I've slowly started to feel better.  So my decline was from the drug, and not the cancer.  My birthday was April 5th, and I had told people in early March not to come visit me because I'd been so sick they would have just been watching me sleep, but as it turns out, they could have come.  (Lesson:  you can't plan with cancer.)  Since I stopped the Gemzar, I have been able to cook a couple of meals, (and even eat a few bites although I'm still down 9 pounds) stand for longer periods of time, stay awake for hours at a time, and just feel more and more whole.  I even woke up at 10:00 a.m one day, without an alarm.  What a luxury!  Now, I still have a lot of pain in the liver and stomach and have a lot of gastro problems and am very tired.  If you'd dropped the Ann from 4 years ago into the body I occupy now, she'd have run screaming, just like the aforementioned French.   But, in comparison to last month -  I have improved a lot, and no longer wonder if I'll be dead within the month.

On my birthday,  I even managed to go to Michael's to get a scrapbook and Macy's to get a sweater. I rarely leave the house so that was impressive.  (And I remembered why I don't leave as it was also energy-zapping).

And, I had the energy to turn fifty-five! (An age that would have normally taken me a lot of mental energy but now I'm just thankful for).   I went out to dinner on my birthday with my family, and even ate a delicious steak and had tastes of sides.  It took two days to recover from those things and I was super nauseous the next day, probably from taking in more calories at one time than my body usually does in a month.  But,  I did it, enjoyed it and was so grateful to be able to do it.  I was very happy that day.

So, in case you hadn't figured it out -  this is good news.  Something is finally working to shrink my tumor.  Even cutting out half my liver didn't do it.

With the good comes the bad:  it was the intolerable Gemzar that is shrinking the tumor, so back on the intolerable Gemzar I go.  I start Wednesday with a 50% dose reduction, and I will refill all my anti-nausea pills, wash my sheets and arrange for my son to get home from school on his own by Thursday.  Despite the horrible side effects, going back on the drug was my idea.  My doctor was willing to put me on TDM1.  But, if something is actually working for me I'd be a fool not to try again.  I want that extra four months or whatever this will technically give me, and so I'll suffer for it.  I still have TDM1 to use down the road.

After seeing my path report, I hadn't realized that the cancer is abutting the portal vein, which is not a good place for a cancer to be, at least in my uneducated opinion.  Right now, the vein shows no "significant displacement."  I'm not sure what happens when there is significant displacement but I'm not sure I want to find out.  Shrinking it down off that vein sounds like a good idea, even if I have to feel bad a little while longer.  Also, apparently, the cancer was on the march and I'd had swollen lymph nodes near my liver, which have now shrunk.

Now, here I go, busting some bubbles like a kid on a summer morning, but facts must be faced:   the thing Stage IV breast cancer patients know is that when you get regression or even NED, it's temporary.  Cancer always wins.   Gemzar could continue to work and shrink the cancer down to nothing (NED) and it could stay that way for months, or a year.  Hell, a miracle could happen and it could be two years.  I could see my kid off to college and then be the woman people whisper about, "wasn't she supposed to be dead by now?"

Equally possible, the next 3 month scan could show cancer the size of France.  You just don't know in Cancer World.  I have known women who were NED who died six months later.

But, me?    I am living in today.  My cancer has shrunk - today.  Something worked - today.  Something got me closer to my goal of seeing my son off to college - today. Screw the future.  Today is good.  Today is full of hope. Today is beautiful.

I did what every girl does to celebrate  - I bought some new shoes.  I didn't get the kind I'd have bought four years ago, with sky high heels.  I bought some Bobs, the flats that are by Sketcher, but I made sure that they had glitter in them.  Some things never change.  I decided if the cancer was shrinking, if I was approaching something resembling health, I should go out in in real shoes, and not slippers.

Shoes with sparkles, to reflect my optimism.

I take a photo on my birthday every year.  I am proud that I was able to do it this year and so I share it with you.  I am 55, and damn happy to be alive.

Ann:  now with less tumor!!





114 comments:

  1. After your last post, I was very uneasy aboutw what was to come. So glad to read this.

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  2. So glad to hear about Reggie! I'm curious, though. Is what you have still considered an oligometastasis, and if so, is there hope for a complete cure?

    Sending the positive healing vibes your way!

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    1. I don't think so. It is still only in the liver but the way it has been resistant to treatment and grew back immediately after resection surgery seems to indicate that there isn't hope for a cure. I didn't even get months until I came back after the resection in the ablation spot. No doctor has given me that hope since after the resection; now I hear we are managing it rather than I'm "salvageable."

      But, with the new anti-HER drugs coming out, you never know. I haven't met anybody on TDM1 that has gone long-term yet but I have people who have gone a year or more NED and that's impressive. And, they have new ones in the pipleline.

      And, if I can get this off the portal vein, maybe we can do an ablation again that will last longer.

      The thing that freaked me out was that it was spreading from the liver to the lymph nodes - at least I was always able to say, "well, it's only in the liver" and think maybe someday they could do another ablation. But, if it's trying to spread, that's not good. If it does spread, it's over.

      All speculation. Not every doctor (or even most) agrees with the theory of oligometastasis anyway but I sure wanted to! Nobody seems to think I will have a long life anymore but nobody is telling me I'll die quickly either. I think they just aren't speculating with me anymore.

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    2. Good News Ann, I have been waiting with you for your results, this is wonderful. Happy Birthday Too You.....
      When I get good news I like to buy shoes, but I really love to buy purses......
      You should get a new purse, that would really make you feel good.
      MJ

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  3. I think you look pretty darn good! xxx ooo

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  4. I hope you are the woman everyone whispers about for a very, very long time. As I know do you. Congratulations on the great news and the birthday!!!

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  5. You go, Ann!

    But I find myself curious about your preoccupation with France :)

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    1. Well, you add one metaphor, you try to find matching ones.... :)

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  6. I find you absolutely inspirational! God Bless women like you!

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  7. You look absolutely beautiful! Congrats on the tumor shrinkage. I bought some new boots with my happy scan news!

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    1. Thank you! Why do woman buy shoes when they are happy (or sad?). My son was looking for a topic for his IB extended essay and I should have suggested that. Surely he could do 4,000 words on it. :)

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  9. So now when someone says, "You look so thin", your response can be, "Yeah, but it's just tumor weight." BWAHAHAHA!!!!! Another cancer joke for our Dixie Riddle Cancer Series. xoxo

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  10. I think the glittered flats are going to make the cancer ass-kicking much easier than in the stilettos:)

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    1. Not as sharp on the cancer, but easier on my knees. :)

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  11. Such a wonder that the nasty Gemzar is working. Anything is possible. Today I saw a Pelican drifting on a fast tide backwards on Honey Creek in GA - looking where he had been, not where he was going. I only mention this as anything is possible. Enjoy your shoes and Happy belated birthday............

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    1. Lovely visual. But I prefer to look, not backwards, not forwards but straight into this moment. :)

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  12. You ARE 55 and I am damn happy about it too!!! Sending hugs!

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    1. If I was healthy people would be telling me "you look damn good for 55." (Grey hair, blotchy skin, chemo wrinkles - age me and it doesn't show in photos so much). Now if they just tell me "you are 55" I'm over the moon!

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  13. Every birthday since my diagnosis is "Another year of not being dead!" And I'm good with that! Double nickels was a pretty good year for me. I hope that it is for you, too.

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    1. Wonderful and I didn't once think "this could be my last." Didn't even slip in. :)

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  14. Ann, it has been with great joy that I have told people about your results! Woo hoo! I do recognize that this regression isn't permanent, but it sure is fun RIGHT NOW! (My daughter asked me if I am anxious about my upcoming scans on April 19. "Anxious" isn't the word I'd use . . . "impatient" is how I feel. I want to know what's happening. I'm only three months into my official Stage IV diagnosis, so this is the first follow up scan. I hope to join you in the regression club!)

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    1. Early on in the diagnosis, you really are eager to hear results. It's something you can't wait for. But once you are into it for a while, you realize it doesn't make much difference. It feels terrible when you get bad news - but you get on with it. It feels great when you get good news - but you get on with it. It's all temporary so I no longer care or even get "scanxiety."

      Except in the waiting room. :)

      I suppose when I hear "there is nothing more we can do" than I will be upset but now, it's another day in the life. You may feel as I do someday or it may always be pressing for you. Seems to go both ways. :)

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  15. This is such good news, a great birthday present! ~Kate

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  16. You look great! And what a wonderful birthday present. I'm hoping that you get this gift many more times to come (and am curious about what books you got...anything good??) Hugs from the librarian Ann.

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    1. Yes, my son picked a theme: pulitzer winners.

      So, I have: The Brief, Wonderous Life of Oscar Wao by Junot Diaz. A Visit from the Good Squad, Jennifer Egan. And The Board, Cormac McCarthy.

      I have a couple of cancer books to review that I must so these will have to be my treat after I do my chore. :)

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  17. hi Ann. Happy Birthday. Shoes are the answer to most things I find. Great news about your scan. Not so great about having to go back on the Gemzar but maybe the lower dose will be a bit easier for you. Make the most of the good days. You look great by the way.

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    1. Thank you! And, i'm hoping along with you that the lower dose of Gemzar helps me. (And, still works!)

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  18. Wonderful, upbeat post......but, then again, you manage a little 'upbeatness' no matter what! So happy about your results, you made a lot of us smile. Enjoy these lovely days.....and many, many, many more.
    Elaine Mercado

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  19. Another great post - thanks for reminding us to enjoy Today. It's easy to lose Today in trying to replace Yesterday and worrying about Tomorrow!
    I also am a purse person - but I have got my eye on a cute pair of sparkly flats - oh how I miss my spikey ankle boots! But as long as I can still keep on with my sparkly apparel then I know in still alive!
    You look wonderful on your birthday pic - thanks for still making me smile and I am so pleased that even though your latest treatment was ghastly to say the least, for once it has thrown up some brilliant news. They do say that the more horrible the medicine tastes, the better it is for you - and that certainly is true here.
    Enjoy this good time - and good luck with your next round of treatment.
    Sue :)

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    1. My doctor said that too - he said every time a patient can't tolerate treatment, it seems to work. Well, I'm freaking stubborn and so if treatment works I'll damn well tolerate it!

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  20. Amazing after all this awfulness - is that even a word. Happy 55th Birthday! Try to eat more, build up your strength for the treatments ahead. Wear those sparkles to treatments so you can remember the good thoughts of today and the happy things that will come. I am so very Happy for you that the recents results were not what you were expecting. YOU ARE BEAUTIFUL!!

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  21. I'm the one who posted the question about oligometastasis. I appreciate your reply. Yes, there's so much that isn't known yet that it's difficult to speculate. I'm an early-stage BC survivor, and my friend is stage IV. It was in her liver and abdominal lymph nodes, and like you she went through many different chemos without much improvement. But she's finally NED now and doing so well she's even playing roller derby!
    I'm hoping the same for you. (Minus the roller derby, but that as well if it's what you want to do!)

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    1. That was a good question and I thought about it all night. I guess by the definition of the term, I am definitely not. It means treatable by local means and since it grew back after local treatment, than I am not. But that doesn't mean we can't try again. My surgical oncologist didn't seem interested but we'll see if I can shrink it off the portal vein.

      I don't want to play roller derby. But I want to feel good enough to play roller derby and that's what's important. I'm so happy to see that it is possible! I'd love to just have one more period of feeling normal and energetic. And, i want that period to be next year when we start looking at colleges for my son.

      Too much to ask for? I say no!!!

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  22. Well, happy birthday, indeed! I'm so happy to hear there's been some positive news for you. Some trade-offs. Sure. But, after all, we're talking about cancer. The "today" mantra is a good one, I think. May there be many, many, many more todays.

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    1. Thank you! It's important to remember that nothing is forever. I fear my family thinks this regression means cure is starting. I warn them but then I don't want to ruin their joy. Or mine. So we can just life with our life as we have it, and that's a good thing.

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  23. Great news, Ann. You're still giving cancer's ass a good kicking! xx Ann in England.

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  24. Wonderful news Ann, what a great birthday gift.

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  25. This is such wonderful news! Absolutly made my day. I am so happy many prayers are being answered. so when does your son graduate???? are we having a party!>

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    1. He graduates next year! I don't have that long to go - seemed like I wouldn't make it for a while but now I feel like I will. I know the school will help me find a seat early so I don't have to bump into the crowds and be in pain the entire time. So looking forward to seeing his very hard work pay off.

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  26. Tears of joy! Prayers of thanks, and high hopes for those glittered dreams come true. I can't think of a better birthday for you! Hugs and love!

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    1. Koryn, you are a dear. Such a good friend. Thanks for your support..

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  27. Ann, you have amazing strength that you dont even know you are using! Telling your story to others, is allowing you to still fight with that powerful mind you have! Glad to hear you enjoyed your birthday! Thank you for sharing your story.

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    1. Well........you are welcome! I don't see it as strength and honestly, I get so much from my readers that it helps me more than you can imagine.

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  28. So glad to read this post! That is a great birthday picture. You look great! Now where's the picture of those shoes!!!

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    1. I posted them on my "butdoctorihatepink" facebook page. Please "like" it or at least check it out, because I can't post little things here so I do it there. I posted a photo of my shoes. :)

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  29. Doing the happy dance here in Maryland for you. Happy Today!!!!

    Stephanie

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    1. Post that dance on YouTube, I want to see it. :)

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  30. Hi Ann,

    Happy birthday! Looking lovely there in your photo! Great advice for all of us about living - today. Good luck with the new and revised Gemzar regimen. Maybe the lower dose will be a bit more tolerable. I hope so. I'll be thinking of you on Wednesday and beyond.

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  31. Beautiful photo, you look fabulous! So glad to read all the positive things in your blog and, when I've stopped laughing, I'll read it again. Love and belated birthday wishes xx

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    1. Thank you Lizzie! Glad you are enjoying it and you are laughing. :) I was too...still am. :)

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  32. It was such a pleasure to read your post. Not only do I like your writing a lot - so smooth and easy to read, it really draws you in - but its actual content brought great news too! I am so happy that you've seen improvement. I was really sorry to hear that Gemzar made you so sick, but what a result! Here's wishing you the best for Round Two. Linda A. xxx

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    1. Thanks for the compliment on the writing. That makes me feel good. Almost as good as the news. :)

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  33. This is good news, Ann. I'm going to have to share this. And happy, happy birthday.

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    1. Thanks! yes, do share it because the lesson is even if you think something is not working - it may be. I was sure I wasn't getting benefit from my regimen and I was!

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  34. yippee to new shoes and a belated happy birthday ! nicola in calgary

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  35. Congrats on the good news! I love your optimistic spirit. I'm a Stage III patient, and I found your blog through cancerfree2b. Happy birthday, and may happy returns!

    Sandy

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    1. Good luck to you in the future Sandy. I hope your treatment goes well, is easy and more important - successful!

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  36. Ann, I am so very happy to read this post. Yay for Ann with half the tumor, same great sparkle! Yay for turning 55! Yay for sparkly Bobs! Yay for steak! Yay! Just Yay!

    My oncologist said that it seemed, in cancer treatment land, that the worse your side effects were, the more effective the treatment. I thought she was daft, but here you are, proving her right. Yay again!

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    1. My oncologist said exactly the same thing. Strange huh? Well, I'll try again but it's not a way to live so I hope I get it down to nothing and get a break!

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    2. *voice drops to a whisper*

      Do you think maybe it isn't just a line after all?


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  37. You are so beautiful, inside and out, Ann! Very very happy birthday, very very happy that you got some good news. I've been following you since my own BC diagnosis 3 years ago, and you mean a lot to me and your many other fans out here. xoxoxox
    --Carolyn

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  38. Happy Birthday Ann! Sending love and wishes that you are tolerating your next round of Gemzar.

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  39. Happy Birthday Ann! After your last post, I was thrilled to see you looking so well and to hear the good news about the retreat. As you're contemplating various stages of "miracles" - 6 months, a year, 2 years - I thought I'd share this news which I just saw about a week ago: http://www.huffingtonpost.com/2013/03/28/cancer-drug-shrinks-tumors_n_2972708.html. It doesn't seem to have been widely publicized, and of course it's a long shot, but who knows? They may in fact find a way to stop metastatic cancer. Soon. And I thought that prospect might help with the next round of Gemzar. There might be even more life than you imagined on the other side of it! I selfishly hope so. I only found your blog recently, and want to keep reading your writing for a long time!

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    1. I have heard of it and it sounds great. But it will be a long time to get to where I can get it - Stage I trials to market is many, many years. But, it's a promising idea and I sure hope it works in humans they way it has it mice! (Mouses? Meece?)

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  40. ann so happy you updated with this news. I checked in a few times and was getting worried. Shrinkage, Shoes and Shopping! Yeah! hope the reduced dose is just as effective and much more tolerable - praying for continued success with this drug. You look fab in your pic - Happy Birthday! roz from her2support

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    1. Hi Roz! I'm so sorry I didn't update in a timely manner. Please find my facebook page as I almost always post there daily to let folks know I'm alive and well. It takes a lot less work than an entire blog post. http://www.facebook.com/butdoctorihatepink

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  41. My reasonably healthy (but twitter typoing) self should only have looked that good at 55.

    In a decent, manly way, of course.

    Excellent news!

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  42. Hi Ann,

    I am writing from Curetalk, a medical research blog and I would like to interview you for our patient platform. We conduct interviews with the aim of sharing stories and information and I am sure your experience would help our readers. Please drop me a line at priya@trialx.com if you are fine with this. Thanks, Priya

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  43. Dear Ann, I have recently discovered your blogg and it has really helped through several months of chemo. Am now recovering from having willingly inserted a large saline filled brick into my chest so please don't be too funny because it hurts to laugh : ) very best wishes from Stockholm Sweden!

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    1. I know what you mean - sometimes I get liver cramps if I laugh too hard! But do it anyway. :)

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  44. Hi Ann,

    Very interesting discussion glad that I came across such informative post. Keep up the good work friend. Glad to be part of your net community.

    Thank You.

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  45. Happy birthday, I'm SO glad to hear your news. Every day is another day to live, and you are truly inspirational in your determination to do that. I'm sorry you have to go back on the Gemzar -- here's hoping the lesser dose is easier.

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    1. Thank you! I find out tomorrow. Or really, in the coming week. I do hope it is more tolerable.

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  46. I am CRYING with goosebumps right now (truly the best I've felt in days). This is wonderful news! Though I'm sick inside to know you will be feeling that level of misery again ... I think it will make it a bit more "manageable" knowing it's the Gemzar's "working power" creating the misery as opposed to the disease.

    I look forward to seeing your beautiful 60th birthday photo in five years!

    THANK YOU for being an amazing vessel of hope and inspiration.

    Love, Nicole xoxo

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    1. Nicole, thank you for your wonderful words and being so hopeful for me. :)

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  47. Talked to your Dad this morning and he told me to go read the new post cause it was good news. So happy for you and the family. All your followers will take any good news no matter how big or small. The sparkle I see is not only on your shoes but in many peoples hearts as well.

    Judi in Reno

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    1. Oh I'm so glad you spoke, and thank you for contacting me. Love your metaphor. :)

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  48. Gosh, you are beautiful, Ann. So thrilled you got good news. Hoping the Gemzar kicks cancer's butt without kicking yours. We've never met but I check for your updates every single day. You are a wonderful writer.
    Best,
    Karen in NYC

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  49. Happy Birthday, and I'm so glad to hear that you received good news!

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  50. sometimes I cry when I'm sad. Sometimes I cry even when I'm happy. I wasn't halfway though your blog today and i was crying buckets of tears.
    I know being so autisticy I wear my heart on my sleeve[versus folding into myself as the majority of those on the spectrum, which sometimes makes me feel blessed and sometimes envious of them] but I want you to know that though we have never met, I truly love you and your family so much. you have NO IDEA what you have done for me and my own family. In my opinion your existence is a gift from the universe, from the god you don't believe in, to an incredibly f333d up world.
    i am so happy for you that I am probably going to cry some more [and do alot of crazy, happy stimming as well.]

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    1. *hugs* to you as you cry. Being autisticy, the virtual ones are probably your favorite kind. :)

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  51. Ann, I find such peace in reading your posts. Even though there's a little "bad" news in there with the good, I find your candor and your wit amazing. I wish I could share it with my mom and she could see how you've approached your diagnosis/prognosis. I think sometimes she feels alone but there are many in the world who are facing it as well and you are SUCH an inspiration. This is fantastic news - I will continue to think about you and pray for you. I was bummed, scared, worried when I hadn't seen a post in a while. Glad you're back.

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  52. Wonderful news! Belated Happy Birthday!

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  53. Ann, you really do look wonderful! Happy, happy birthday! I'm so happy to read your good news. I KNOW you'll be there for your son's graduation....I'm pulling for you! You're such an inspiration to me. I love your *sparkly* outlook on life. It helps me feel better when I'm feeling down....my BC dx came two years ago when I was 33. Thank you for this great blog!!

    Corri

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  54. Hi. My name is Lucia and I was wondering if you could fill out this survey for my High School science project? It would help a lot. Thanks!
    http://www.surveytool.com/s/SA4FC0F46D

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  55. So good to hear that the Gemzar was working after all. So sorry it's such a nasty drug for you to take. Hopefully knowing that it was the drug and not cancer that was making you so sick will give you some peace as you struggle with this drug. I will be thinking of you and checking in from time to time to get an update. Take care Ann. Meredith in Canada

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  56. Hey there Belated happy birthday. Love your blog! It is too cute and very inspiring. Thanks for the great info and the sharing of your insights.
    Check out cancer centers of america

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  57. Happy Belated Birthday Anne. May you have as many more as you can get out of the dreaded treatments. Keep rockin the shrinking tumors. They look lovely on you! xo

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  58. From time to time, I read your posts and before I enter your blog, I say to myself : "Let's check Ann again...maybe she announce the victory". Same thing happened today when I read your last post. I am glad that the you have now less tumor :) Hope you wil have none soon. Don't let anybody tell you it's impossible. Don't allow you to think that cancer always win. I know deep in my heart that it isn't true and that these thing can be cured. Please, Ann, next time when I'll check your blog let me know your triumph over the disease.

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  59. I have never responded to a blog before but just had to let you know how much I appreciate the comic relief I get when I read your entries! I like to think that I have an expressed similar sense of humor in all this cancer crap. I email all my fellow nurses regularly about my newest challenges, have told them I am taking "one for the team" so I can offer some experience and wisdom if one of them ever requires it!

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    1. Carrie, I'm sorry it has to be you that is the team player. Tell them they owe you big time!

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  60. Just read this. Behind on my reading and blogging too. Glad you had a good birthday. You look fantastic!

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  61. Happy belated birthday! (Just discovered your blog after reading the NYT article today that had a brief interview with you....) Your picture is great, you have the best smile. I'm cheering for you and wishing you all the best.

    Anne

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    1. Welcome Anne! You have a fabulous name, by the way. :) I hope you stick around. I don't whine too much. :)

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  62. Good morning Ann! I have to admit that I was very worried to check your blog, fearing the worst and here you are, doing so much better, tumar down and sparkly new shoes! You are such an inspiration to all of us...maybe you should get another pair of shoes, a girl can never have too many! Love you! Angel Sue

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  63. I am curious, do you know your blood levels of vitamin D - 25(OH)D specifically? Are they above 60ng/ml?
    The reason I am asking is that cancer patients very often have correlations with low levels and I was wondering if you ever checked it.
    Thanks.

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    1. I don't know, I have always been a sun lover and was supposed to get skin cancer, so I can't imagine a deficit. But you never know. :) I'll see if he's taken this level or feels he needs to.

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  64. I am a fairly new reader and already love the way you write. The tone and nice images:) I will stick around, just keep it up! :) Happy birthday by the way :)

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