Update 11/24/2014

November 24th, 2014 § 104 comments

IMG_3314The brain MRI on Friday unfortunately showed that the metastases are to my brain, not just my skull. There are many tiny malignant lesions in the brain (imagine salt sprinkled onto a bowl of popcorn) so I am not able to do focused gamma knife radiation to shrink them individually. I will need whole brain radiation to try to shrink them all before they cause me to have symptoms.

Whole brain radiation will radiate all of my brain tissue, healthy and malignant. It is usually given in a series of 10-15 sessions, every weekday. It has side effects both short term and long term. In addition there is a claustrophobia-inducing session of mask-fitting where a mold of the face and head must be made for the patient to wear  during radiation treatments to immobilize them. Here are some photos that one woman made of her WBR process.

I am meeting with the radiation team on Tuesday to get all of the details and do the scheduling. I haven’t met with them yet. I believe the goal is to start next week. I do not yet know what this means for the radiation procedures I had scheduled for my liver. I will also be continuing with chemo as much as is possible during this time. The most serious side effect will be fatigue. As in: sleep 20 or more hours a day fatigue. Can’t get out of bed fatigue. So I will need to make arrangements to get more help here at home to help with the kids and with driving.

For now that’s all I’m going to report because I want to see what the team says about my particular case and let everyone know the plan for me. It’s obviously not the news I was hoping for. But as always I will do what needs to be done to try to manage it.

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§ 104 Responses to Update 11/24/2014"

  • Vicki Anderson says:

    Every single one of us is blessed to share in Lisa’s extraordinary journey.
    Grace.

  • Pam says:

    Oh, Lisa. Damn.

    Sending you love. xo

  • Helen says:

    As always your grace and courage is admired. As someone looking from the outside you have given me tremendous insight on how to support the person in my life who is facing the same journey you are.

  • Jennifer says:

    I’m really, really sorry to read this.

  • Tracy says:

    Scary stuff Lisa. I remember seeing stacks of those masks when I was going through radiation. Thank goodness radiation treatments are usually fast.
    Keeping you in my thoughts.

  • Christine says:

    you are so brave, for enduring and sharing your journey so honestly with us, my heart goes out to yours, peace

  • Diane says:

    I’m so sorry to hear this. Ask for some anti anxiety meds before doing the mask mold. I know my twin sister needed them before hers and she wasn’t claustrophobic. Sending many prayers!

  • Erica says:

    I’m so sorry, Lisa. Thinking of you every day.

  • Jacky says:

    Sh%$%$t, not the news I was hoping for. My prayers are with you.

  • MLB says:

    Thinking of you and sending love

  • David Davidson says:

    My thoughts are with you Lisa. I was hoping for an update with better news. I’m sure you were too. I join all of your many Facebook and Twitter friends to share with you are collective love and strength.
    David

  • Marisa Birns says:

    Oh, Lisa. So sorry you must go through this.

  • I am so sad to read this. Here for anything. And everything.

  • Tammy Nichols says:

    Lisa you have made us part of you’re life. Remember you’re part of us now you hurt we hurt. We Love You Lisa Keep fighting do not stop. Keep the Hope the Faith and the Fight in you. You can do this Lisa you can People have. Please know you have become important to many and we are all here for you every last one of us.

  • sue laybourn says:

    Oh bugger, I didn’t want to see this. 🙁

    You are always in my thoughts. Sending you hugs and good vibes, as always.

    xxx

  • jacinta lithgow says:

    wishing you peace and calmness as you approach this challenging task. Your grace shines through. may that grace and the love around you wrap as you take each step towards managing this new challenge. thank you for sharing with us.

  • Francoise says:

    Hello, Lisa,

    I was diagnosed with breast cancer last November. I first heard about your blog from the NYT piece, and have been reading you ever since.

    I so admire your courage and grace. Your kids have an amazing mother. You inspire me to find beauty every day in this world. Thank you for your beautiful words.

    My heart breaks with the latest update. I send you light and love.

    From a perfect stranger in NH,

    Francoise

  • Gail says:

    Lisa, I’m so sorry to read this. If there’s anything I can do for you……I’m here. xoxoxo

  • Marylee Sauder says:

    Blessings to you, Lisa. You are in my thoughts and prayers.

  • Jody Schoger says:

    Dear Lisa,

    Stupid, horrible cancer. I wish your news were better, too.
    As always — sending love and light. We are all here for you.

    Love,
    Jody

  • Danielle says:

    Love from a stranger…think of you often.

  • Amy Galloway says:

    Dear Lisa,
    I think of you everyday. Though I have not had the opportunity or privilege to
    meet you in person, I feel connected to you through your writing. What a courageous story you are telling. I read, I take a deep breath, I am in awe of your “foot forward, what do I need to do next” philosophy. Your family is fortunate and I feel fortunate to “know” you through your writing and your song. Somehow, peace.

  • Barbara says:

    I am so sorry to hear this.
    Your strength and perseverance inspires courage; you are a very beautiful person. I can only hope that our messages can return to you a little of comfort and support you selflessly give us.
    Always in my thoughts.
    XO

  • eileen says:

    I’m so very sorry, Lisa.

    Social media is such an amazing thing … so few of us know you personally, yet (probably because you so generously share so much of yourself with us) so many of us consider you a cherished friend. I hope you can sense all of us walking beside you.

    What can we do to help you get through this next intensive stage of treatment? Is there a virtual version of thousands of people showing up on your doorstep with frozen lasagna? (LOL. Hope that mental image made you smile.) Can you set up a fund at a deli or flower shop to which we can contribute, so family meals are taken care of and maybe we can send you a bit of beauty to help you through?

    I know you want the Sloan-Kettering fund to be your legacy, and certainly no one should be dissuaded from giving to that … but, in addition, I know that so many of us who are living through this with you would like to help with your day-to-day challenge in some tangible way. Let us know if you think of something. In the meantime … sending you strength and virtual hugs.

    • Nancy says:

      I second this wonderful idea of letting us know what we can do for you and your family to help you. I am so saddened by your latest news and I too think of you every day and hope you will have some good news to share with us. My husband had to wear that mask for radiation treatments and he got through it. I know he was able to listen to his music in the room, and this he liked, ask the radiation technician if you want to try that. Sending you love. I hope your Thanksgiving brings you some happiness.

    • Gert says:

      So true. Honesty and everything reecgnizod.

  • Alisa says:

    I’m sorry to hear this news Lisa. Your writing has touched so many lives and I hope you get though the radiation process as best possible. Love to you and your family.

  • Kristi says:

    Totally rotten news for you. I’m so sorry that you’ve been given another burden, but I also know that you will do what is needed to get through this. Your strength amazes me.

    I agree totally with Eileen. Is there anything tangible that we can do to help you get through this?

  • Lisa, thinking of you every single day and so impressed by how you handle each new development.

    Sending you live and support–

    Judi

  • Julie says:

    I love you, Lisa. xxxxx

  • James Goetsch says:

    I am so sorry to hear this.

  • Jennifer McFarland says:

    For lack of a better word, that sucks.
    I’m sorry

  • Lisa I don’t know what to say, I’m sorry.
    If I could change things for you I would; this just breaks my heart.
    BUt I do know how strong you are from your past words; I hope this has a silver lining….somewhere.
    Please reach out to me if you need ANYTHING

  • Stacy says:

    Oh, Lisa, I can only echo what everyone else said so articulately. I’m so sorry.
    Just FWIW, the radiation team at MSK were/are really wonderful. Very special people, each and every one. So you will be in the best hands. Hugs.

  • Karen says:

    Always with you, Lisa, holding your hand. XO

  • teresa says:

    Sending positive energy your way! You are in my thoughts and prayers.

  • Jeanine says:

    Lisa, you are in my thoughts and prayers. Wishing you much strength as you begin radiation. Peace, love and light. From one mom to another. ♡

  • Deborah Broide says:

    Lisa,
    What is truly striking about your journey, and your posts, is how — with your words — you are helping others. Few people in your position would do this. You are a remarkable woman. I keep you, and your family, in my thoughts ever day.

    Deb Broide

  • Barbara T. W. says:

    So sorry to hear of further progression, Lisa. You continue to face what must be faced with stamina and determination. I pray the treatment plan works beyond all expectations.

  • Sherry Siegel says:

    Lisa,
    Just another stranger who thinks about you often, sending you love, hope, strength & peace. You are so dear to so many of us.

  • Rebecca Davis says:

    Exactly what Sherry Siegel said above.

  • Larry Roberts says:

    Lisa, this is just not fair! Don’t fear the mask they give you a little room unless they pull your legs down and smack your nose like they did with me. I had 10 of them and time goes very slow.

    • Patsy says:

      I much prefer inmirfatove articles like this to that high brow literature.

    • http://www./ says:

      Lapso de tiempo??? pues que hay lapsos de otra cosa (no cuentan los lapsus).A lo mejor estoy equivocado, pero creo que no es correcto usar la frase “lapso de tiempo”Y no empiecen una campaña para crucificarme sólo por esta crítica ehh, lo digo en buen plan. Y les faltaron las paletas Chipilo, que venían en una bolsita anaranjada con polvo agridulce y la figura de una ardilla.T. A. Z.

    • disse:This article is certainly well-written. This is a rare instance these days. This writer really has the information together in this article and is on the ball. I share the fresh views of this writer.

  • Linda says:

    You remind me of my mother, Lisa. She did everything to fight her cancer. I admire you for your fortitude, just like I admired mom for her stoic acceptance of whatever treatment was necessary. I don’t know that I have that kind of strength. I marvel at your willingness and your grace in the face of such horrid news.

    You’ve been in my thoughts daily. I keep sending positive and healing energy your way. Although I don’t know how much that effort helps you, it helps me to know that I’m trying to add my little bit of strength to yours.

  • Shari Lentz says:

    This one made me cry. Because I love you my friend. ❤️

  • I am so sorry, Lisa. I send a massive hug and so much love.

  • Lita says:

    Lisa, it’s so hard to find the right words. My heart hurts for you but also, I’m blown away by the way you tackle everything head-on, grasping at every fragment of this life we all want to last for as long as we can hang on to it. With every word you manage to teach us how precious every moment is & you share your soul & your courage. I feel as though I know you in ways beyond your blog. From one mother’s heart to yours, I wish you time without pain…

  • Wendi Price says:

    I wish I could be by your side to hold your hand. You’re on my heart. <3 Hugs

  • Tammy says:

    Sending ❤️

  • Mary says:

    You are a shining example of the strength of the human spirit. Thank you for sharing your life with us. You are an inspiration. Bless you and your beautiful family. I will never understand why bad things happen to good people. Peace and love.

  • marcinca says:

    This makes me cuss and wanna throw something. Hugs Lisa. Love is with you.

  • hillarief says:

    Hard news to get. I don’t know what else to say. This stranger to you is heartbroken alongside you. I hope the plan is put in action very soon, though.

  • Rebecca says:

    Damn Lisa! I hope that for this week at least, for a few days, for Thanksgiving you are able to have some energy to spend time with your family. I know cancer doesn’t take holidays but I hope you get some beauty there with your husband, kids, and those who are close to you.

    Then like someone else said- is there a place where those of us too far away to be at your house personally can donate to help your family with the day-to-day activities? Is there a restaurant that delivers or something that we could direct our energies toward?

  • julie says:

    Hi Lisa, Thank you for sharing, thank you for your grace and fortitude in fighting back. Wishing and hoping, thinking of you and your family. Julie

  • Sarah Buttenwieser says:

    Just so terribly sorry about this turn of events. Love love love from here.

  • Pat Wetzel says:

    Sending you positive energy and healthy wishes.

  • Sharon says:

    It’s just one blow after another for you Lisa. I hope you get to spend some quality time with your beloved children and husband this christmas. Keep fighting, thinking of you. xx

  • Ruthie says:

    Sending love and hugs and positive energy, because I can’t think of anything you need more:-)

  • Kerry says:

    Again, I find myself at a loss for words. If I was beside you, I would simply offer you my presence. You are such a brave soul, Lisa. You and your beautiful family remain in my thoughts and prayers.

  • meri says:

    Dear Lisa,

    I am appreciative for your update, as well as hopeful and thankful for your stellar medical team to guide you.

    <3 <3 <3

  • Sue says:

    How are your husband and children holding up?

  • Elizabeth says:

    So sorry to hear this. You are in my thoughts and wishing you much better days ahead. Hopefully, whatever you and your team decide on will do the trick.

  • Baltimore says:

    Thank you for the update. That you spend your precious energy to keep us informed is hugely appreciated and much admired. You have such grace in the face of your dizzying medical strategies. Echoing the chorus of above. Wish we could give you homemade dinners, strength, time, hope, and a cure.
    Persevere.

  • Liz Renzetti says:

    Dear Lisa, I’m another fan from afar. I just want you to know that your eloquence and wonderful writing are deeply affecting and I think of you often, though we’ve never met. Also that I have made a long-delayed doctor’s appointment, following your advice. Thanks for all the updates, and for your generosity in sharing your knowledge.

  • Rebecca says:

    Yet another huge, huge reason why I hate cancer so much.

  • Tammy Estes says:

    I have been following your blog for a long while now. Even longer than when my mother was diagnosed with small cell lung cancer this past May. That diagnosis would forever change my families life. I took 12 weeks FMLA to care for my mother. I did not leave her side for one ounce of her experiences. I cared for her right along with every nurse just as they did. Her journey ended September 1st, 2014. Cancer is a horrible disease. Not only does an individual suffer but the family does also. Cancer hits families. I notice that you are now finding out that you have mets to the brain. My mother also had mets to the brain, kidney and hilum and the suggestion was for her to have WBRT along with chest radiation therapy. All palliative you see. You may not want my advice but I will give it to you anyway. You state the worst side effect of WBRT is exhaustion. Whomever is giving you this information needs to give you all information. While it may not be your side effect, my mother experienced a stroke just two weeks after her last WBRT treatment. She was on a steroid medication after that WBRT and then it was shortly stopped. Two days after stopping the medication the vessels in her brain couldn’t handle the radiation therapy. I will forever wish that we were far more vigilant of the medications she was on and for which should not have been stopped. After that stroke, it was all downhill for her. I share this info with you not to scare you but to please become fully informed before you move forward. Please remain strong. I find your journey very eye opening and to cast much truth amongst the cancer community. You are educating many. It is a painful journey and yet, your strength will and are giving many others the same. I wish you much luck and I hope you do not experience the same side effects that my mother did. God bless.

    • Lisa Bonchek Adams says:

      I am sorry she had a stroke but you cannot compare different types of cancer at different stages, in different locations, and a response to WBR. Side effects that are most common are fatigue and memory loss. There are always risks of these treatments and I have been given them all. In my case stroke is unspeakably rare and the cancer poses a far bigger threat. That is always the decision that must be weighed. I am sorry for your loss.

    • Christina says:

      Tammy Estes I think your post is offensive and not helpful. I don’t think that you are a regular reader of this blog. If you were a regular reader of this blog you would know that 1. Lisa is extremely and fully informed of her disease, treatments and side effects.. She’s working with an excellent group of doctors who are up to date on the latest advances in cancer management. 2. SHe is fully aware of the effect cancer has on a family – doesn’t need you pointing it out. Your post was insensitive and inappropriate.

  • jennw says:

    Lisa, i am reading the words on my bulletin board, “the meaning of life is that it ends.” We are with you in the fight, pulling for you and listening for you. Live on. With love. Jw

  • Barbara says:

    Lisa, you are a magnificent woman. I admire your courage, love, and clarity, on this journey. I thank you for sharing your experiences, good and bad. I hope you have a truly loving Thanksgiving with your family. I’m sending you a big hug. – Barbara

  • Linda says:

    Lisa, every year at this time, I share with my family and college students the famous Apache wedding blessing b/c of the beautiful line, “. . . enter into the days of your togetherness . . .” which you will do. We so wish you could have had this holiday time without this new bad news. But you are encircled with love and the strength of ties beyond your touchpoints. And I am another mother holding your hand, Linda

  • Lisa, I am sorry to read you had bad news again. ‘Only mets to the skull’ was so much better than what you heard now. Thinking of you ad wishing you strength.

  • kcecelia says:

    Standing with you. Wishing you the best outcomes possible. Admiring your strength and clarity. Sending love and support to you and your family. Katherine.

  • Tessa Martin says:

    you are so inspirational, more so than I think you know. I am truly grateful that you have given me, given us, the privalidge of walking this journey with you.

  • I hope you can get some time to worry about the laundry. The days — or moments — when we worry about little things, get distracted from cancer or other awfulness by humdrum life, those moments are bliss, I think. Most just don’t know it. I hope the holidays offer you some bliss.

  • Ellie says:

    Hi Lisa.
    Just wanted to add to all the lovely comments.
    I’m in England, you,re in the good old US of A so I can’t come round with a home made meat n potato pie to help you out.. or drive the kids to school (not that they,d want to be in a car with me with all those lanes you’ve got over there !….they’d need therapy after, haha) but do you have a favorite shop/supermarket/deli that I could contribute to ? Just maybe to get something/anything to help you all ?
    as always sending you lots of love xxxxxxxxxxxxxxxxxx

  • Pam says:

    “Before you start to judge me, step into my shoes, walk the life I am living & if you get as far as I am, just maybe you will see how strong I really am.” – Anonymous

    Saw this quote and immediately thought of you. You are an inspiration to us all.

  • kathy says:

    Not much to add to the lovely words of all the others but I wonder if you know..you are so loved and appreciated by so many. I would imagine you wouldn’t mind a little time off from being our inspiration but it’s powerful and real.

  • sheila says:

    It is crazy, but I look in on your blog almost every day…really, to make sure you are OK….and I don’t even know you. But I do. You have helped me (without you knowing) in many ways…from helping me support others with serious illnesses, to giving me the strength (cause I’m a medical wuss) to make the decision to go forward with a major surgery that will improve the quality of my life…so that I can live every moment to the fullest. You are the epitome of grace under pressure – no mean feat. And I am glad that you are surrounded by so much love. Thank you for sharing your journey.

  • Joan Markman says:

    Boy, the ups and mostly downs of life with metastatic breast cancer sure stink. It’s hard to communicate to those not living with it just how mentally and emotionally tough it is to live on the knife edge between fear/dismay/frustration and hope, constantly having to choose the least bad of terrible options while life as you knew it recedes into the past. You describe it perfectly — but what else is there to do but just keep moving as best as possible, while appreciating a bit of beauty each day, as you wisely say?

    Best wishes that this latest nasty development can be managed, that you’re still finding that bit of beauty, and that you and your family find peace. Sending all good ju-ju your way.

  • Stephanie says:

    Ah Lisa. Well that truly sucks. I hope, if treatment starts next week, that you are able to have a fabulous Thanksgiving with your family, and the treatments help to quickly eradicate the brain lesions. I’ll be thinking of you.

  • Dear Lisa –

    I am so deeply sorry about your findings and upcoming radiation. I imagine you’ll keep putting one step ahead of the other, as you always do.

    This Thanksgiving I hope you will allow your family and friends to carry you for a bit. I am confident they will bring you laughter and joy and precious memories for each of you. You will be in my thoughts.

    Love, light and healing,
    Lori

  • Cecilia says:

    Thinking of you this Thanksgiving Day, thanking you for sharing with us, helping us reflect on our personal health struggles. Wishing you the best that this day can be and bring. Dealing with stage 4 breast cancer, I will enjoy the relatives and friends that I share the Thanksgiving meal with and am thankful for being.

  • Stacy says:

    Christina.
    Just want to say thank you for addressing Tammy Estes’ inappropriate comment. I had a similar reaction.

  • June Rheingrover says:

    Lisa, I am sorry to read your latest update….I needed a mask when I had radiation to my clavicle… my rad onc was able to cut my face out of the mask and still keep me in proper position which helped with the claustrophobic reactions I had ……I also, know a person who had WBR and at the end of her treatment, she left the next day for Peru… I hope you have the same success!

    • Lisa Bonchek Adams says:

      Hi… maybe because it was for the clavicle they could make that opening wider… for the brain radiation they can’t have any openings because even moving a centimeter could change the area hit. Eyes and mouth are covered, just a nose hole. No exceptions. Side effects shouldn’t hit until a week or two after I finish, but I’ll have liver radiation effects on top of that. How great your friend could go to Peru though!

  • John says:

    I read you last two entries and it broke my heart, Best wishes.
    John

  • JoAnn D Kirk says:

    Well……SHIT!!!

    L,J

  • Feeling gratitude to you this TG weekend for your resilience and strength in your brutal fight against cancer and for sharing and including us in your fight and for staying with us. Your family is so lucky that you are here with them today. We are so lucky too. Happy Thanksgiving. Please find as much joy and peace as possible in your day today.

  • Laurie says:

    Hi Lisa,
    My Dad had the same kind of radiation. Afterwards, his head was super itchy, and what really soothed him more than anything was a cream by Lindi from their radiation line (which is a crazy sentence to write.) I can’t think of anything else to say except I wish this wasn’t happening!

  • Victoria says:

    I’m so horribly sad and shocked. I wish you many, many days of peace and I hope your treatments are not hard on you, but hard on those cells. Like the above poster, I just wish none of this was happening.

  • Deanna says:

    God bless you and your family. Thank you for sharing your story, it is a gift to many.

  • Ramya says:

    You sure are brave.. Came across your blog and couldnt stop going through each and every post. I just lost my dad to cancer a month back and have devoted my time to bloggin abt the pain the family goes through.

    will surely follow your posts.

  • Michelle says:

    Following your journey and thinking of you often. Sending love your way

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