Taking The Reins

April 22, 2011 at 11:21 AM (after chemo, Energy, Family, friends, Palliative Care) (, , , , , , , , )

First, apologies to those of you who were greatly confused by my last post. I lost a few edits in the internets (can’t even blame it on Microsoft!), including the crucial little addition of “Last…” before “…Monday” in the first paragraph. So all of what you read about happened April 11th, not the 18th. Probably the distance from the event helped me look upon it with such a healthy dose of scorn; if it had been this week, my pride might still be wounded.

“So,” you reason, and correctly, “the meeting ‘Thursday’ happened a week ago and change; tell us what happened already!”

The visit itself went very smoothly (although you can bet that SuperMom and I found a wheelchair with a fresh O2 tank right away, and didn’t mess around with using my own portable liquid). If you’re looking for more slapstick fun, you’ll have to check back later and see if I’ve made a fool of myself again. Thursday was quite calm.

I was joined rather quickly by my oncologist, Dr. A, and the Palliative Care/Pain Management specialist, we’ll call him Dr. Feelgood. I asked about other treatment options beyond the Navelbine, and Dr. A mentioned IV Topotecan, which would bring with it the standard side effects of nausea, constipation, diarrhea, and fatigue. I asked about percentage of efficacy, and she told me that there would be a “5-10% chance of any effect” at all on my existing disease, and that “any effect” would mean maybe 1-2 weeks of additional life.

Wow, I thought, doesn’t sound like the teensy weensy percentage of results outweighs the potential of feeling even worse than I do now. What else you got?

“What else is there?” I asked, in proper English.

She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.

So with firm conviction, I said, “Enough. I don’t want any more treatment. If something miraculous-sounding comes up in the Clinical Trials department in the next few weeks and I’m still well enough to get accepted, I’d love to hear about new options, but these choices are not good for me. I’m declining any more treatment.”

Mostly, what I was thinking was that my tolerance levels are pretty low already; if I can barely handle my kids being around me when they get wild today, how will that go when I’m feeling sick and staying in bed because of chemo? I’ll be a royal bitch, that’s how that will go. I’ll have to ask someone to keep them away from me, and that’s NOT how I’m going out.

The percentage of happy is more important to me now than the number of days. Quality over quantity.

Dr. A cried. (!) Mom cried. I cried. Dr. Feelgood laid his therapist “I hear you taking control of your life and it’s a good decision that’s right for you” vibe all over us. There was lots of hugging. Then the fabulous N.P. came in and she cried, Mom cried, and I cried all over again. More hugging. Everyone told me how strongly they supported my decision, how they thought it was the right thing to do.

But for possibly the first time ever, I didn’t feel like I needed validation on my decision (no, seriously, ask my mom). I knew I had made the right choice. I’m TIRED. Tired of feeling rotten, of being stuck in the house, of not being able to do anything for anyone but myself (and even then just barely). I’m tired of switching horses mid-stream every six weeks. If there had been ANY response worth a damn from my lung mets since they showed up in 8/09, I might be more interested in fighting a longer battle. But there hasn’t been, not one. And I’m done.

I love how willing everyone is to pitch in, but I know it’s hard on everyone (especially the intimate family who sees me all the time) to have to carry this load. I want to go out in charge of my life, with a little dignity left. Blackmailing friends into coming to visit by making them bring offerings of Starbucks Chai Latte. Being able to sit at the dinner table and make my kids laugh.

So I’ll certainly keep posting, but from here it might take a slightly different direction. And I’m happy to answer any questions you might have – ask away! But I’m already feeling better without chemo on board, so unless you have a hotline to some pretty powerful folks, I’m going to let it ride.

And I’d love to give appreciation to those of you who envisioned me as a pit bull, one who would grasp at any straw to milk every second out of my life, for my kids’ sakes. Turns out what’s best for them is to have their mom AROUND and PARTICIPATING, not hiding inside all summer and watching their birthday parties on video at the end of the day. So I’ll fight while the fighting is good. And then I’m going to have a chocolate milkshake and a really killer nap.

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111 Comments

  1. Denise said,

    This post breaks my heart. While I completely get your decision it just makes me HATE this disease so much. That anybody has to make that choice is just wrong. And to be brutally honest, it scares the piss out of me that I will one day be doing the same. I wish you SO much happiness and many pain free enjoyable chemo free days!!! You deserve them after the road you’ve traveled. I look forward to your updates chronciling happy days with your family!!!

  2. Mr. Wonderful said,

    Love you.

  3. Ada said,

    Oh, Honey, I wish we were there to bring you a chai, dinner or rake your leaves. Just know that we are thinking of you and sending our love.
    Ada

  4. kirsty said,

    Ditto. I’m so very sad, but also content that you’ve made the decision that’s right for you and your loved ones. This disease is a bitch. You are so much stronger than you know.
    I hope you find peace, joy, the energy to make every moment of every day count. I hope for sunshine and gentle breezes, cloudless skies, never, ever rain.
    Most of all, I hope for a miracle.

  5. Jennie said,

    Well, sh*t. I know you’re over validation but I just have to say, that even though I wasn’t there to hear (or see) it all firsthand, I think you’re make the right call, too. And I just watched my grandfather make the same decision in February after a 13-year battle with prostate cancer. And no one disagreed with him for making it either. And I don’t think he regrets it (on whatever pain-free planet he now inhabits).

    I just want to say that I think you’re the bravest, funniest, baddest Mama around and I’m so glad you’ve blogged during this craptastic journey — not only to remind me everyday just how lucky I am to have beaten the bitch back (forever? or, for awhile?) but also for your boys so that someday they will really fully understand what you did in order to have more QUALITY time with them. All I can say is that I promise to spend the rest of my time here on Earth fighting this disease, which has chated us both out of so much. Hang tough, sister! XOXOXOXO

  6. Maggie said,

    Goddamit. I have so enjoyed ‘meeting’ you through your blog and your sense of humor and wonderful writing have given me a lot of smiles and giggles. Thanks for that. I hate this disease and think I would follow the same path. I know I would, and will want the same thing when my time comes. Here’s to making good memories in the next weeks and months, and for many hugs and kisses with you and all your boys. You have been a blessing to all of us who are on the same journey…..

  7. Margaret said,

    Sarah, I cried too. I hope you have many, many wonderful memory making days with your family ahead of you. I always enjoy reading your blog and I look forward to your next post. I will be keeping you in my thoughts and prayers.

  8. tori said,

    Sometimes you just know. Whether it’s the right guy, the right home, the right pair of shoes. I totally get it, that when it came time for this decision you would know and feel at peace with it. I hoped that for you with all my heart. Of course that doesn’t stop me from sitting here with tears streaming down my face and I will still be praying for a miracle. Save me a seat on the couch woman.

  9. Alli said,

    I too faced the decision to stop treatment and choose quality of life over quantity of days. It is a very tough choice and I think it shows how strong you are and what type of person you want to model to your children. I am glad that you have people supporting you of your decision. I had many people feel I was giving up. I have actually lived longer without treatment than many believed I would with treatment. I believe the chemo was killing me and without it my spirit was able to take over and give me the time with family that I craved so much. I am sending you good thoughts everyday that you have the energy to enjoy your family.

    PS. I too blackmail people to bring me a soy chai from Starbucks.

  10. Annette said,

    Can’t find the words to express my admiration. I’ll say ‘yes’ to every day of life right along with you. Sending love and light as we receive yours through your words. Annette (30-something breast and ovarian cancer vixen)

  11. Dawna said,

    Sweet Sarah,

    Once again you’ve shown your humor, grace, determination, optimism and acceptance. These are things that your boys (and all of us) know and admire, and will miss, remember and draw upon – always.

    Sending you love and light always, but especially each time I take my little black Maho Bay wishing stone in my hand, close my eyes, rub it and remember the view…

    xoxoxo
    dawna

  12. Nancyspoint said,

    Sarah, Add me to the crier list. You don’t even know me, but I feel like I know you a little from your great blog. I’m glad you made the decision. I’m glad your family is supporting you in it. I’m glad you are so open and honest. I’m glad you are already feeling better. I hate that this has happened to you. My words seem pretty inadequate, but they are all I have… with love and supportive wishes.

  13. Melissa said,

    Sarah,

    Thanks for sharing your story so far. I hope you have many good days with your family ahead of you.

    Peace,
    Melissa

  14. Cathy said,

    My mother died of ovarian cancer when I was 12. She was only 44 years old and for many years, I didn’t fully grasp how young that was. I hated seeing her suffer but selfishly, I really just wanted her well and to live for my sake. As I grew up, my perspective completely changed from thinking about how rough it was to lose my mom at such a young age, to realizing how incredibly difficult it must’ve been for her. If I could’ve given her and myself one gift, it would’ve been to know that she made the types of decisions that you have and for the very same reasons. My thoughts and prayers are with you and your family. (((HUGS)))

  15. mizgreenjeans said,

    Honor and respect for your decision. Blessings sent your way. Did want to suggest (if you have not done so, forgive me for coming late to your blog) is there a Reiki practitioner near you who can help manage pain? Let me know if you need help finding someone in your area.

  16. David said,

    thank you Sarah…as I near my 2 year anniversary I often think of how it might end…your post (as well as many others) gives me hope and strength that I can’t properly express. I am with you!

  17. Stephanie said,

    Sarah -

    I cried, too. But I continue to marvel at your strength, humor, and grace. I hope you are enjoying the family vacation and getting some quality time in with the boys.

    Stephanie

  18. Laura said,

    Sarah,
    You don’t know me either, but I too have enjoyed your blog.
    I just want you to know that you are loved so much by someone you don’t even
    know. I can only hope that when it is my time I can be as strong as you are. You are
    such an inspiration and you have all of my respect.
    I hope you enjoy your time with your family, you so deserve it.
    Much, much, love, peace, light, and health.
    Laura

  19. katherinembc said,

    No advice, just wanted to let you know I am reading and thinking about you. Take care.

  20. Gayle said,

    I don’t know you either, and I’ve never commented on your blog before now. But I do know your situation…too well, I’m afraid. I honor your decision, and I’m grateful that you have loving and supportive people around you. Thank you for honesty and for continuing to share your life with us. Enjoy every sip of that chocolate milkshake.

  21. Stephanie Holland-Brodney said,

    Sarah,

    Reading this brought tears to my eyes-mostly tears of relief and peace for you and your family. May the beautiful times ahead be full of laughter, love, peace and a kick arse pair of Manolos.

    Stephanie

  22. Liliana said,

    You are showing your readers what being brave really means. I send you hugs and more hugs.

  23. Queen of Team Kp said,

    I stumbled upon this as I follow @chemobabe on twitter, and as the caregiver of a 28 yr old Pancreatic Cancer patient who has decided to decline treatment after one year I just want to tell you how much it means that you say the things out loud that I think he is too internal and private to say, that and he is a man, cancer hasn’t changed that! Taking control of the rest of ur life, however long at is, is a sign of ur strength and power not weakness. Your kids WILL remember this summer, they WILL remember you participating, and they WILL want to remember it because of the way you choose to experience it with them. You are my hero of the day.

  24. Shelli said,

    Sarah, I admire you so much today for your calm, decisive reasoning, for making the decision that I know I will also face on this rocky metastatic road at some point. Thank you for your realism. May your enjoyment and family time be full!

  25. Evan Lipson, MD said,

    I’m an oncologist at Hopkins. Lani Horn’s facebook post took me to your site. I am touched by your remarkable courage. I run a website that celebrates the ways that people living with cancer make the most of each day (seizethedays.org). It’s clear from your blog that you squeeze every drop out of life, even if that means saying “enough is enough” when it comes to more chemo.

    Wishing you strength, peace and many chocolate milkshakes…

    Evan

  26. Donna said,

    Sending love and warmth your way. Thank you, Sarah. You have touched me in ways you could have never imagined.

    “In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.”
    — Elizabeth Gilbert (Eat, Pray, Love: One Woman’s Search for Everything Across Italy, India and Indonesia)

  27. Connie said,

    You have created such an enormous bond with so many people through your blog, including me. I love your spirit and your courage, your sassiness and your humor, your willingnes to take it all on and your decision to do what’s best for you and your family. You are an angel sent here to earth. You have positively impacted so many others. I continue to pray for you and your family. May you have sweetness and love in the days ahead. I am blessed to know you.

  28. Jackie Fox said,

    I admire your strength and your choice, and I wish you much joy with your kids.

  29. Katie said,

    You are truly a warrior. I am in awe and sending you oodles and scads of love.

  30. Sue Mellusi said,

    Wow, some people on earth make a much bigger difference than others. You have made a huge difference to me. You’re a beautiful, strong woman who has handled so much of life’s worst sh*t with such indredible grace. Your words have given me, your readers, and especially Whit and Avery (whenever they read them), a lasting invaluable gift. xoxo

  31. ChemoBabe said,

    you are brave and you are blessed to have the courage to be honest with yourself.

    i wish you days filled with love and grace.

  32. Robin said,

    This is the first time I have seen your blog and I also cried. I hate this disease too! I have a different type of cancer but I have often thought about when I would put on the brakes for my treatment, if things turned for the worse. Your blog took me on an instant trip to my past when I was 12 & my mother was dx with ovarian ca. I believe when your children grow up, they will think they had a very brave and loving mother with good memories for a lifetime. I’m sending you wishes for many quality-filled days of laughter and love!

  33. Kathi said,

    Sarah, not only will I come over with Chai Latte, I’ll bring my own little stove-top espresso maker & make some for anyone who’s there who needs the ‘hi-octane’ stuff. You just send me an email & we’ll figure out the logistics.

    Yes, I’m crying, too, but is cussing allowed here?? ‘Cause I’ve got this string of cuss words rolling around in my head that you have had to made this decision at all.

    I wish you nothing but Quality, dear lady.

  34. Alice said,

    Sarah – I’ve followed your plight through conversations and shared tears with my daughter. You are an amazing young woman who has fought a horrific battle – my heart goes out to you, Mr. Wonderful and your two boys, as well as your mother and your extended family. I know their hearts must be breaking with a feeling of helplessness – but at the same time they must be proud of how unselfishly you have handled the past years as you tirelessly fought your battle with cancer. I remember you and your husband (then boyfriend) dancing and prancing around at my daughter’s wedding almost 11 years ago. You are as beautiful today as you were then. My prayers are with you and your family; don’t give up on that miracle….they do happen. Alice (Tori’s mom)

  35. Cliff Lewis said,

    I am totally crying right now. Life is not fair. You have inspired me to live each and every day as if it is your last. My wife had Stage 3A Ovarian Cancer and she is to date a survivor, Thank God. Your spirit will go on in the Astral Plane, if you believe in life after death. I do.

  36. sandhy said,

    this post makes me feel really sick. But also really proud, of you [no, I have NO idea why! After all, you aren't my child ;) ]. I just feel that you are setting me a good example to follow IF this ever happens to me.

    I am chuffed that you have ‘taken the reins’ so to speak, as it allows me to think that one day, on your position, I would be as brave and sensible. And it allows me to think that you are happy and in control at least as much as you can be. I like that for you.

    You are SO brave. I know that bravery is sometimes not a choice – but in this instance, it is. I remember reading one of your earlier posts and getting really upset with you, because I didn’t understand you or what you were going through and how you were dealing with it. Since then I have looked forward to reading you – and I hope to be reading your posts for a long time. And I do that thing now too with the clothes etc ;) thanks!!

    I hope every moment is enjoyable – I hope your hair grows like Mad Mint…I so hope things for you. Now I’m crying too. You are really an inspiration to me, and to all the women I know who have or have had cancer [we have a 'Cancery Group' - oh joy heh heh].

    Just keep on keeping on girl. Sending you and your family lots of love and lots of positive thoughts…
    I am so sad…and so happy I found you :)
    x

  37. Erin said,

    Thank you, Sarah, for sharing your humor and your pain, your love and your sadness. I’m so thankful to have learned of you through a mutual friend, and I want to say thank you for your blog. Your post broke my heart and yet it was so good to read you make a decision with such conviction and knowing. Lots of love and hugs your way… Erin

  38. Jane Horn said,

    Sarah, our family thinks the world of you…you, Edward , and the boys are warriors. We wish we could put our collective arms around you and bathe you with love and comfort. We all have cried with each post you have made, and we feel the greatest grief that these posts will come to an end soon. We love you and send you strength for your journey. We send love for Ed and the boys. How we wish we could have known you close by instead of a world away.
    Love
    Jane

  39. patricia said,

    Laughter….tears….strength.. You’ve always managed to give them all to me at once!! Thank you for sharing your soul with me… Continuing to send powerful prayers, energy and love your way…. xx’s, patricia

  40. Jenny said,

    As someone who is on her 3rd chemo in under 3 years and who has been warned that her next option after this is weekly taxol then…I totally understand your decision and know it is one I will probably have to make at some stage. Wishing you some good quality time with your kids and know that you are making the best choice possible

  41. Marie Curran said,

    Dear Sarah,
    I do not know you but just read your last blog because it was linked to Addie Mae Weiss’ latest Facebook post. I couldn’t help reading it, and it brought tears to my eyes. I don’t know how people who go through what you are going through find the strength and determination, and also the humour to talk about it all. I will pray for you and your family, that you all enjoy the best of each moment together. And I will pray for a miracle, because I do believe they happen.
    Marie

  42. Bill said,

    Dear Sarah, the “C”,

    Just read your “decision” post of 4-22. I just want to tell you that the very brief (in numbers of personal communications) friendship that we have shared (mostly you sharing via your storied posts) has been good and I wish to say good-bye to an obviously most wonderful person. I missed that opportuntiy with a couple of other “Inspire” friends, very dear ones in fact.

    This world is, has been, and will continue to be a better place for your having been in it as, no doubt, will be the next world.

    Following through your decision process from reading your words reminds me very much of the same thing that my late wife, Paulette, did. Like her, you have done so with “goodness and grace”. It’s all about “style” baby, and you got style.

    As the late Barbara (retired UCLA professor that I have mentioned to you before) might have said, your last post was in a less florid literary style but still managed to entertain and enlighten as usual for you. God, how that will be missed. Your words will be read and re-read so often by so many. It is a gift that you have given so freely. For all of us, Thank You, Sarah Feather.

    Enjoy your days, and quoting from Desiderata, “You are a child of the universe, no less than the trees and the stars…………And whether or not it is clear to you, no doubt the universe is unfolding as it should…………..be at peace with God, whatever you conceive Him to be”.

    Paraphrasing from “Gone From My Sight” by Barbara Karnes, like a sailing vessel leaving port embarking upon the sea, from here the image becomes smaller and smaller until on the horizon it disappears. Yet, from another place, it appears on the horizon and grows larger and larger as it approaches another place.

    Now, go make the most of those days with your family and friends and give them some more memories!

  43. Ashley 'Psych' Pasen said,

    Shotgun, You’re amazing. You and your family will be in my warmest thoughts and loving prayers

  44. Shelley Davis said,

    Amen! I applaud your decision. In the end you and GOD are in control.
    Blessings! I will be keeping you close in my thoughts and prayers.
    Love,
    Shelley

  45. Liza said,

    Dear Sarah,
    What courage! I’d love to say something poetic… but. You are inspiring and amazing. Wishing you and your boys some lovely lovely days to laugh and play.
    –fellow pool mom—

  46. Eileen said,

    I don’t really know what I want to say. I am so sad and so inspired in the same moment. These are not the conversations anyone should have to have, but you have shown us all how to face them head-on and be strong in the face of difficult, ugly, sad and scary news.

    I shared with my two younger boys tonight about you and your boys. My 6 year old said “I wish for a miracle so she can be 94″ and my 9 year old said “I’m sad for her sons. If it were me, I’d rather live shorter and be happy though.” It makes such sense, but it’s a choice I wish you didn’t have to make.

    I’m sending you all my very best (prayers, wishes, vibes, energy) to you and yours.

  47. Elaine said,

    My daughter called me to read your latest post. We have followed your journey through your incredible blogs, and I have laughed and cried so many times. You and your wonderful family will share what really matters every day. Your gifts of courage, humor, love, determination and resolve, so eloquently expressed to many, many followers have and continue to be a true inspiration. May your burden be lifted, and peace and understanding be the pillar of your strengh in the days and weeks ahead. I am traveling the same road, and so I am with you in spirit and sisterhood. You will be in my heart each day.

  48. terri ( momthatprayz) said,

    Sarah, I also am sadden but extremely proud and so impressed by you and your courage. We have emailed back and forth a few times about faith and God… I pray that you have continued to search for the truth in this area… This life is very short for all of us, even if you don’t have cancer… in the relm of eternity it is a vapor in the wind…I haven’t met you on earth in person but I am hoping to someday in heaven. I will continue to pray for you and your family… I pray that you will come to peace with your creator…the simple prayer , Please forgive me , and I want to live with you forever is all it takes to secure a a place for us in heaven. This is Good Friday… Jesus paid the price on the cross, all we have to do is believe in him… he did the rest!!!! If and when you do make a decision for Christ, share it with your family and tell them you want them to also meet you in heaven. What a glorious reunion we can all have. Sarah you are one special lady!!!

  49. Keri said,

    You don’t know me but I have been cheering for you for so long now and am heartbroken to read this. I think you are the bravest person I “know.” I hope that you are able to make the most of the “quality” this decision will allow you. You have already been an inspiration to so many people.

    • Ruthann said,

      Hey Sarah….You are a brave and strong and clearly brilliant woman. You know when enough is enough and you know when you need to go live with quality and I admire that. Be at that dinner table, enjoy the chatter, cherish every moment. I know your family and friends will be happy to have the quality! Be well….With warmest wishes for you and yours. Ruthann

  50. Laura Ervin said,

    One more person who is added to your list of admirers…. Sending you peace, love, and if possible, a miracle…

  51. Danielle said,

    Huge loads of Love to you sweet girl.

  52. Denise said,

    It’s not fair. I can’t imagine the courage, strength and grace within to not only come to this decision, but to share such a personal decision, so sad of a decision with such eloquence. I am truly sorrowful and shocked……………..I want to have a magic word to say, but can’t find one.

    I pray you feel peace inside and that each new moment in your life is filled with utter joy. I never stop praying for miracles. God is with us at all moments. I look up to you in awe, and will keep you close to my heart, and in my prayers.

    God’s Peace, warmth, strength and blessings to you. Big huge HUG too.

  53. Beth L. Gainer said,

    Sarah,

    Your posting made me cry, too. I am so moved; this is about the most poignant posting I have ever read. You are brave and have good judgment about when enough is enough. Life is unfair, and cancer sucks.

    I support your decision to seize the reins of your own destiny.

    – Beth

  54. Ginger Armstrong said,

    I have followed your journey in your blog and your friendship with Dawna. You have made very large footsteps for me or few others to follow in. Thank you for sharing your humor, grace, courage and message to live fully. May you know peace in the quiet hours, laughter to lighten your heart, love to journey forward.

  55. Jennifer said,

    When a decision like this can be made from a place of peace instead of anger, you know you have made the right decision. I love you, and am looking forward to seeing you this week.

  56. Nancy said,

    You are an amazing woman with a wonderful family. I’ve seen you with your boys the past few summers, and it’s always occurred to me that you’ve been filling them up with good memories. I’m guessing Mr. Wonderful and SuperMom will continue to nurture them along the paths they’ve already begun.

  57. bemberley said,

    Now can I have first dibs on your boots?? ;-)

    Totally in awe of your style and beauty, dignity and grace.

  58. Betsy said,

    You are one of the few who live with integrity, brutal honesty, humor, and more courage than anyone I know. I hope you have a sense of peace that will leave your family and friends with an example of a life beautifully lived, a legacy of love, nurture, courage, and generosity. That those who have the privilege of knowing you have been forever changed from knowing you. I know I am. My greatest hope for you is that you know this deeply and profoundly. Your life is continuing to inspire and move us and that will never stop.

  59. Anne Henry said,

    Dear Sarah,
    I can’t help but cry as well – I remember you so well as a spunky, smiling, wonderful student and have admired you as you have gone through this awful disease with such courage and determination. I hate that you have had to come to this day but admire your courage and strength to make this decision. I may be far away but my love and many prayers are winging their way to you! Please share my love and hugs with your family as well and, especially, your parents and Poppit! Special love to you – enjoy every minute with your family and let everyone near you pamper you!
    Anne

  60. Kris said,

    More respect, appreciation, love and best wishes!

  61. Ally Horn said,

    You and the family will be in my thoughts and prayers!

  62. Jackie Geer Murphy said,

    Sarah – I went to AIS, too – Class of ’86. I don’t think we ever met, but you will forever be in my thoughts now that I have read your posts. Thank you for your humor and strength, your sharp insights make me appreciate the little things. You are something special…

  63. Karen Lilla said,

    Oh Sarah….I’m speechless. I read every post with the hope of a miracle for you, and just want you to know that I pray for you, your boys, and Mr. Wonderful.

  64. Mary said,

    Although I live in Chicago, my daughter lives in NY. If there is anything I can do, please let me know. I respect your decision and know how hard it must have been. I am stage IV but a year behind you, I have a 12 year old – I hope if I have to make this tough decision that I can do it with the panache, strength, and dignity that you have. God Bless. Mary

  65. Mrs. "M" said,

    You and your boys have always been in my thoughts. I admire your honesty and humor. I admire you as a mother. You have taught me many lessons. As I mentioned many years back in my “letter” to you … I am here if you ever need me. Much love to you, your husband the the boys.
    Love,
    Mrs.”M”

  66. feistybluegecko said,

    Thanks for your honesty – I am speechless, and in awe of your strength and dignity. Sending love, respect and hugs, P xx

  67. Cathy said,

    A mutual friend posted a link to your blog and I just felt the desire to say…what? What do you say? Life is unfair? Well of course it is – you know that. How wonderful that people are supportive of your decision? Well what the hell does their opinion matter in that regard?

    There are few things I have learned in life that I absolutely know and believe without any doubt. One of them was learned after watching my brother die as a result of AIDS…and that is that there are far worse things in life than death.

    I wish your days to be happy and as pain free as possible and when the time comes, I wish for you a peaceful passing.

  68. Dee said,

    Sarah,
    Reading your post made me sad to read. You are one heck of a survivor. Willing to do what needs to be done when the time is right. Yet at the same time looking at the whole picture when making such a difficult decision. You are a blessing to all of us. Thank you for allowing us to be on this journey with you.

    Hugs !

  69. Wendy said,

    Sarah – While reading this made me cry, I do understand. You are such a strong woman, friend, wife and mother and the quality of time spent with your loved ones is the most important thing. I have no words of wisdom or encouragement as I’m sure you’ve heard it all. All I want to do is give you a big hug.
    Wendy

  70. KLarson said,

    Dr a cried?! I am a patient of dr a’s and I can’t imagine it. Now her np, she is a softy, so it doesn’t surprise me that she cried. Your description of this dr’s visit was incredible. The scenario is every cancer patient’s worst nightmare but you made it sound calm and beautiful. And you said it was okay to ask questions so i’m going to ask and if it’s too hard I understand. Here goes – after being diagnosed with cancer I can almost make peace with my own mortality. Yes I’ve been dealt an unfair hand but I can play my cards. What about my kids? I guess I’m just not at a place that I can accept what cancer has and may co tinue to do to their lives. And I still visualize you as a pit bull against cancer. You are just making the best decision for you and your family. I love your wisdom, honesty, and tenacity.

  71. George said,

    Sarah,
    Wow and holy shit….Cant even begin to say a proper hello under these circumstances . I should have done it yesterday let alone years ago. Sarah,this is George,Ali,Britt,Austin and Peytons dad…I have been avoiding at least saying hello for way too long and for that I am sorry,but more so pissed that I have missed out on getting to know you and your boys.Ed I knew when he was much younger and a considerable pain in the ass,like his brother Dirk.(they were ok really,but just barely!!)
    I do have stories but have resisted the papparazi and copious amounts of gold bouillion for a “scoop”… lets just leave it there.In short they were both extremely lucky to have found any women to marry them!!! I look forward to someday soon meeting the boys,perhaps at Ali’s wedding if that works out.Iam a sucker for kids,especially real little ones,and am on a list at our new hospital here in Eugene/Springfield to hold babies/ newborns when and if they need an old fart to pitch in.
    I also know I like you because you like milkshakes…..(you had to say that didn’t you)
    I hope this finds you with a little smile on your face,Sarah.
    Keep doing the best you can.Thinking of you often./George…

  72. Caroline said,

    I realize there may be a day in my life where I need to make the decision you just did. But I want to be able to make it myself and not have anyone make it for me. I fully support your decision. Big hugs and enjoy your friends and family.

  73. Laurie said,

    Sarah, although I rarely pop in here, I’ve poured over every post, astounded by your wisdom, humor and strength. Thank you for allowing us to be by your side as you share from your heart. I send you love and waves of comfort, with wishes to you and your family for every day being filled with love.

  74. DC said,

    Put me in the category of those you do not know, but who have followed your blog for some time. I am SO sorry and saddened that there are no other courses of treatment for you…and for your family’s sake. As someone whose Mom passed 10 months ago from this horrible disease, I know how hard it is on those you leave behind… but your statement to ‘fight while the fighting is good’ makes complete sense to me. You have and will continue to fight, as best as you can. Keeping you and your family in my prayers! Fight and LIVE well!

  75. Amy Daley said,

    Although we have talked about the decisions from this post, I am thankful to know that you put your always-eloquent thoughts on “paper” (computer screen). You are the best writer I know, Sarah. Love you, my coolest friend.

  76. Jane Roper said,

    This feels like an extremely weird thing to say, but I’m really happy for you. Sounds like you are making the right call for yourself and your family and that is awesome. You fought damned hard, girl, and you deserve to rest and enjoy the time you have left.

    JR
    (who you also made cry)

  77. Ann said,

    My blogging soul sister. What can I say? You have always been an amazing woman, who has handled this rotten disease with grace and honesty, and you continue to do so. I think you made the decision I would – you gave it your best, fighting, kick-ass chance, but then you have to face reality and look cancer in the face and say, “okay, you may have won this round but f*uck you, I’m going to enjoy my life in spite of you.” Make memories with your wonderful husband and children and while you are doing that, please know that I will be sending miracle vibes, thoughts, prayers – however you swing – your way, every single day. iIm planning, with mind control, Either a Hail Mary clinical trial or a miraculous recovery. Maybe you should freeze that holy water into ice cubes and make a martini now and get started on that.

    Because, you are just too awesome and nobody who reads your blog wants to lose you, so I can only imagine how your real life friends and family must feel.

    Honey, I’m glad you said you are into questions because I have an idea and am going to email you.

    Big hugs and blogging love,

    Ann

  78. Shannon said,

    Sarah: you don’t know who I am but I want you to know how much I enjoy your blogs. After finding out that my mom has stage3C OVC I’ve done a lot of research – that’s how I found you. You are such a strong women – enjoy every moment with your family and friends * Hugs *

  79. K said,

    I am sad, I am pissed, but I am also so proud to know you ;) You are an inspiration to me and from the looks of it from your FB account and this Blog to MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY people.

    Thank you ! Hugs to you and your family.
    Kristen Luke

  80. Harry Back said,

    I’ve got nothing to write. Just a pause. Your words give me pause. I don’t know you and haven’t much followed this blog but you’ve touched me from half a world away.

  81. Anne B. said,

    Sarah,

    I am better and the world is better because of you. If only we all had 1/10th of your grace and humor. Still sending warm thoughts and prayers for you all.

  82. Whitney Crane said,

    Soborobie! Its whobotobie! I was going to try and write a message in ob but I can even remember how it works so many years later! Haha:) I wanted to send my love to you and let you know you and your family are in my thoughts and prayers. Since reading your post I keep having flashbacks of all the great times we got to share together. The time I visited in boston when we first started talking ob… sitting in my livingroom in wilton laughing… dirks wedding sneaking out back! I have so many memories of fun times! I also wanted to comend you on the strength and perservierence you have shown in the past 5 years. You are an amazing woman! Being like you I completly understand your need to go out stong and have the quality be all it can be! You will always be in my heart. I love you sooooooo much and I miss you :) Love forever and always Whitney Crane

  83. Michele said,

    I’ve just recently discovered your blog but the few posts I’ve read have touched me very deeply. You are one gutsy woman and I wish you joy and serenity during the remainder of your remarkable journey.

  84. Erin said,

    Dear Sarah,
    Very late comer to both the blog and the post, but you bring forth in me so many feelings of admiration, love, despair, joy, and sadness with just a few paragraphs. If I was within 3 hours of you, I’d bring you a chocolate milkshake tomorrow. Wish there was something I could do for you and your family.

  85. BreastCancerSisterhood.com said,

    Dear Sarah,
    I can’t imagine the strength and resolve with which you’ve already fought. What a bright light you’ve brought to everyone facing cancer. This is the decision I would make if I am in your shoes. Four months ago, my husband died unexpectedly, and I begged God to take me then. I have no children, no family other than my mother who has dementia and is well cared for. While I have gotten my feet under me since James died, I will be OK when my time comes. You’ve surrendered your will to God’s. He will love and care for you always.

    Best,
    Brenda Coffee

  86. Kristin said,

    Sarah,
    I have heard of your amazing strength through Sarah and Kim. Thank you for sharing that with me and so many others. Thank you for sharing your voice. I hear you and your desire for quality over quantity. My husband just passed away from brain cancer. We ended treatment as well when we realized that he couldn’t afford to feel any worse and enjoy our children and his days ahead. He was able to have family dinners with us up until the near end, he was able to visit with friends, he was able to go to dinner, father daughter dance, to the store to buy gifts for his children and me. It is not the length of a life. It is the quality of the moments. It was hard for me to believe this when we were in it. But looking back, it was the right decision. I wish you many memorable moments. It sounds to me that you have been a gift to your family and friends.
    Best to you, Kristin

  87. Nancy said,

    Sarah, just listened to your podcast. I can’t believe you can still make me laugh and cry at the same time!
    Last week, you were in one of my many vivid dreams. Although I know nothing about your religious practices, and mine are very lax, you talked about God. You said something like, ‘Knowing God has a room waiting for you in the big Hotel-in-the-Sky takes the fear out of the journey. It’s not knowing where you’re going that’s scary.’ I haven’t done anything about it, but it/you made me think.

  88. Boston Mamas said,

    Big huge hugs my friend. I love you.

  89. Tami Boehmer said,

    I am listening to your interview on the Cancer Warrior show. I am amazed by your serenity, clarity, humor and wisdom as you describe your situation. I am a stage IV breast cancer survivor who writes a blog call http://www.miraclesurvivors.com. I am sorry I didn’t find your blog sooner. You are an inspiration. Prayers and love to you and your family.

  90. Joyce Heckman said,

    I echo Nancy’s above sentiment about laughing and crying at the same time while listening to the podcast, particularly after learning of your passing. You will continue to be an inspiration to all those faced with a cancer diagnosis.

  91. Danielle said,

    Nancy – thank you for sharing that. I had thoughts of Sarah on April 21st while praying and I did reach out to her- as strange as that is for me. I never heard back from her, but for some reason in my heart I think she was ok with going to heaven.
    I miss her so much!

  92. Danielle said,

    I do mis you Sarah- praying for the boys and Mr. Wonderful.

  93. Erin said,

    Much love to your family… so many people affected by this one beautiful woman and not one can say that they aren’t better for having known you…

  94. Katie C said,

    You have been in my thoughts and prayers for 5 years now and will continue to pray for your family.

    We’ll miss you,

    Katie

  95. Kathi said,

    It’s so poignant to re-read this today. Rest in peace, Sarah. Our hearts go out to your family. Thank your for shining your light.

  96. davidGisme said,

    thank you sarah….rest in peace.

  97. Christina said,

    Looking for some more of you Sarah- just wanted to read your words again, hear your voice in my mind, envision your smile, think of our years and friendship. i miss you my beautiful friend. i’m glad you are finally at peace. you have left an incredible legacy, and a legion of friends who will honor your memory each day- i love you.

  98. cancerfree2b said,

    Rest in peace Sarah. You are an inspiration. My thoughts and prayers go out to your family.

  99. Denise Archuleta said,

    O am stunned. No Sarah, you must still be here. If you have gone, may the good Lord be holding you close now and telling you it’s going to be OK.

    This is painful. Will miss you.

  100. S said,

    You go girl. Death is not a failure. Live STRONG. We’re all right behind you.

  101. Adrienne said,

    I am astonished at what a loss I feel at Sarah’s passing. She was a model of courage to all of us. She faced her illness with such humor and grace that she became an icon to so many people.
    When I think of her battle to survive I can’t help but think of Dylan Thomas’s poem
    “Do not go gentle into that good night
    Rage, rage against the dying of the light”
    That was Sarah to me…raging to stay with her beautiful boys and her wonderful husband.
    There is nothing that can be possibly be said that will comfort a family that suffered this kind of loss, just know you are in our hearts and prayers.
    Much love
    Ada

  102. Julie said,

    If you’d like to hear Sarah’s podcast…like her on FBook and scroll down.
    It’s a really terrific interview by a really terrific woman.

  103. Eileen Thompson said,

    So beautiful a soul. I’ll miss your blogs. You were so courageous, my inspiration.

  104. WhiteStone said,

    I join my prayers with others on behalf of Sarah and her family. She was a true heroine to me…another ovca patient. I read her words, blogs, posts over the past year or so and did so admire her strength and courage. God bless you all.

  105. Ellen Cleveland said,

    Just loved Sarah. Prayers to Mr. wonderful, Supermom and the kids. I followe
    d her on Team Inspire Ovarian Cancer website. My sister has OVCA.
    Sarah was such a great writer, humorist, positive influence. I don’t know what she did for a living, but she must have been a writer. I’m not a crier, but I’m crying. Love!

  106. The Accidental Amazon » It’s Not A Hobby said,

    [...] never forget The Carcinista’s profound post, Taking the Reins, when she articulated her decision to stop cancer treatment.   “I want to go out in charge [...]

  107. sea change » Leah Kua said,

    [...] her work and his most recent entries, along with Sarah’s last few challenged me incredibly, especially her post where she decided to stop treatment and spend the last few days with her family, being as present for her husband and children as possible, rather than continue with drugs that [...]

  108. All You Need Is Love « The Carcinista said,

    [...] gave Sarah the strength to do what she had to do. It gave us the strength we needed for our journey [...]

  109. A Run for Sarah « The Carcinista said,

    [...] with all the surgeries, chemotherapy and trials to see if we could find something that would work. She never gave up. And this is a lesson that I take to heart. She’s with me every day. Every time I go running I [...]

  110. cancerfree2b said,

    Just came by to re-read some of your words Sarah. I hope your family is well. Miss your sense of humor and your strength. Peace and love to your family.

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