Update 12/27/2014

December 27th, 2014 § 72 comments

IMG_9257Hi all, a short update.

I’ve finished two weeks of whole brain radiation (those two weeks had simultaneous radiation to my C2 vertebrae), and two weeks of liver radiation (one overlapping with brain, so all of this was 3 weeks of treatment). I have been overwhelmingly plagued with intense fatigue and other side effects (fatigue is the worst thing at the moment though).

I need to use a wheelchair when I go to Sloan-Kettering now. I’ve needed platelets and red cells once each in the last few weeks and have needed to be at Sloan for one half-day every weekday for the last month or so because my magnesium (despite daily infusions) remains critically low, which is a dangerous situation. My potassium has similarly started to be an issue as well. I get magnesium and potassium in addition to 1.5 to 2 liters of fluids as well each day because I have been having trouble staying hydrated with the radiation effects. Not enough energy here to go into why the magnesium is still an issue now.

Four days ago on Tuesday the 23rd, I began chemotherapy (4 days after finishing all of my radiation). We are starting a new drug called epirubicin which is an anthracycline just like the well-known adriamycin (it is also red like adriamycin).

So basically I’m spending a half day at MSK every weekday and resting (I’m basically bedridden right now) at home the rest of the time. I don’t leave the house except to go to MSK. I expect at least a few more weeks of this.

I’m thrilled that my family has gone away on vacation starting today and they will have a week to ski and be with cousins and grandparents and get a fun break while I recover here. I insisted that they go; it is so important for me to know that our kids and my husband can have some vacation time and get a break. It is not easy to be a family member/caretaker under these conditions so it gives me a lot of joy that they can have a change of scenery. I have a family member staying with me since I can’t be alone and so that will work out just fine in terms of appointments and help with my needs.

I get foggy quickly so I hope this post made sense!

Many thanks as always to those who support me daily with tweets, emails, rides to appointments, donations to my research fund, meals, etc. And to any MSKCC staff who are reading this: you know how much I adore you.

I am grateful that you all continue to join me here. Wishing you a happy and healthy new year if possible and we’ll keep on going into 2015 the best we can…

xo,

Lisa

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§ 72 Responses to Update 12/27/2014"

  • Taran says:

    It is impossible for you to truly realize the impact your posts have on others. You give a voice to all patients and families. Thank you and bleasings in 2015.

  • Lisa says:

    You make big, absolute, perfect sense.

  • meri says:

    THANK YOU SO VERY MUCH for the update, Lisa. You are one wonderful and fabulous human being. We’ll keep on going with you! XO

  • Sandy G says:

    I have been thinking about you Lisa. You have a large group of us surrounding you with strength, love, and hugs.

  • joanne firth says:

    Hi Lisa. Thank you for the update and for the good wishes. Happy New Year to you too. I have so many questions I want to ask, but I understand how limited your time is. I hold every word you write to us so dear and am truly grateful for the time you take to keep us posted. I also wish some relief for the severe fatigue you are living with as well as the other side effects from the radiation and renewed chemo. I feel hopeful that all of this treatment has had a strong impact on the cancer. Thanks again for your words.

  • Joanne Brennan says:

    My heart is with you Lisa!

  • deborah broide says:

    Dear Lisa,
    Your unflinching accounts of what you must endure (because endure seems like the appropriate word) is remarkable. You are not on an excellent writer, but your post are informative, education and personal (without being maudlin). Suffice to say that I admire you, but I also respect you greatly. Your children are very lucky to have you as their mother. Although we’ve never met, I keep you in my thoughts. Deborah Broide

  • Donna O. says:

    Hi Lisa, Thank you for sharing your life and treatment. I can’t believe what you are having to go thru to stay in front of this crap cancer. I admire your strength and courage. I’m with you in spirit and prayer. Prayers that your current regime will beat the bad stuff. Prayers for your strength to return. Prayers for hope, joy, and peace.

  • rose McLean says:

    Lisa, I remain in awe of your perseverance and steadfastness. Thank you for sharing your story. I wish for you positive results from your treatments, relief from fatigue, and the gift of time.

  • Mary Paulin says:

    My best wishes to a remarkable woman. I hope you know how your courage spills over to those who have far fewer challenges than you do.

  • Karen sadok says:

    Dear Lisa, I send you all good wishes for the New Year. Although we have never met, I read your blogs and
    Tweets. I am a patient of Dr. Dang and will be seeing her in west Harrison in January best wishes. Karen Sadok

  • Kristi says:

    Thanks for the update. I hope your family has a blast on their trip! And, also, that epirubicin kicks things back for a while with minimal side effects! Sending strength and love for the new year.

  • Oh, Lisa, you probably don’t feel amazing but you are. You are going through hell every single day, yet seem to be able to stay focused on what you have to do. I’m glad you have someone with you for company and caretaking. You obvious lack of selfishness shows in your encouraging your husband and children to go on a fun vacation. They need the break, as do you.

    With every good thought for the New Year. Step by step.

    Love,

    Judi

  • Jennifer says:

    you are always quick to say you aren’t…but you truly are quite remarkable Lisa…you have faced your situation in the most remarkable way…you truly are a stellar humanbeing…thank you for your update and wishing you the strength you need to face these beyond tough days…and a huge gentle hug again from South Africa x

  • Steven A. Sanchez says:

    I’ve been following you on Twitter for a little while now after seeing you retweeted by @mortuaryreport, you are a inspiration the toughness that you show is astounding may God watch over you.

  • michele says:

    love you .. you are so brave and strong and good… i think about you and the news you share and the courage you possess .. it helps me get thru my days.. more than i can say.. thank you..

  • IngeB says:

    You are tough. I admire you greatly.

  • David Dobbs says:

    Perfectly lucid, Lisa — the post, even if you don’t feel so.

    And thanks for this update. I’ve been thinking of you very often these holidays, wondering how you’re doing and hoping the world brings you some bits of beauty. I’m glad to hear your family is off skiing and seeing family — glad for them, and glad because I know that you want it that way.

    Weird busy day today, and I’m pledged, god save me, to an hour of laser tag this afternoon with the 12 and 10-year-olds. But I’ll try to get in at least a little walk, even in the rain, and hunt down a bit of beauty to share with you on Instagram. Always thinking of you on those walks!

    Much love,

    David

  • Robbie says:

    Your grace and positive outlook are inspiring! I am almost three years out from my breast cancer diagnosis. Am sending you strength and hope and wishing you all the best.

  • Oh Lisa, again things must have been so tough for you. Combined radiation therapy, additional infusions and another chemo on top of that. I think it is good your family left for a well-deserved vacation, so you can have rest. Glad to hear you have someone staying with you.

    I guess epirubicin is no longer an option when you have had the maximum dose of antracyclines, or is it?

  • Caroline says:

    It seems you are coping well. I wish you the recovery from this treatment. I agree that it is important that your family gets a vacation and can relax.

  • Kim Thompson says:

    Lisa – Although I don’t know you personally, your blogs and tweets have brought you into my life and my heart. Your thoughtfulness toward your family – sending them off for a skiing vacation, knowing that you are in good hands – is an inspiration. I wish that I lived near you, so that I could offer to do things in person. Since I don’t live that close, I just want to say that if there is every anything I can do virtually, I would be delighted to do so. In the meantime, I’m finding ways to do things for others, with a silent nod and smile to you.

    I have three amaryllis plants in bloom – each time I look at one I think of you. Truly, you touch so many people, in such wonderful ways. Each day, there are thousands like me, thinking of you and “holding you in the light.” Whatever comes this day, we are as with you as we can be. You make such a difference for your family and for folks you don’t know.

    I hope this day is a good one. Much love to you.

    Kim and FoxTheCorgi

  • Sharon says:

    Thank you for the update which I know takes a lot of your stamnia to keep us updated. Hoping soon you will regain strength and admire you more than you know.

  • Miriam Cremer says:

    Dear Lisa,
    You are a treasure. It has incredible to read your posts and admire your bravery. I remember you well from grade school– sitting in the front row, your bright eager face taking it all in. You have grown into a remarkable human being. I hope you know the magnitude of the gifts you give to others by sharing your story. Thank you. Here is wishing you and your family a miraculous 2015. We are all rooting for you.
    All the best,
    Miriam

  • Joan Ivy says:

    Bless you Lisa! Your update could have been written by me….. I’m so sorry you’re having to go through this horrible disease at such an early age!!!!
    I thought I had beat Breast cancer, but it showed up shortly in my Skeletal areas….. I’m REALLY having a hard time coping with this. I never realized what Bone Pain was & how truly painful it could be. The tiredness is overwhelming to me, also. I’m unable to do the things I used to do & that’s been very hard to accept.
    Sometimes I wonder if all these treatments are truly worth the horrible side effects!?!

  • Julie says:

    Thank you for the update, your writing voice sounds strong, wishing that strength for you as you go. I admire you so much. Best wishes always to you and your family. Julie

  • Rebecca says:

    Nice to hear from you Lisa! I’m sorry things are so rough for you. It’s funny how we don’t think about magnesium and potassium much when we are healthy and yet they are so critical. My husband is on other end of the potassium scale. He has to be careful to not get too much of the stuff and has to avoid foods that are high in it.

    I know you’ve had your family go on vacation without you before and I’m sure it isn’t easy. Hope they all enjoy their trip though and you enjoy some quiet in the house for a few days.

  • Theresa Meyer says:

    Thinking of you. Best wishes that this new chemo is the drug that eradicates the cancer cells for you. Hoping you get some energy back soon. So too am happy that your family got away and can have some kind of normal time, at least for a few days. I’m sure you are constantly in their thoughts though, just like they are in yours.
    Hoping the all cancer researchers can work together this coming new year and find a cure once and for all for cancer.

  • Cathy says:

    Dear Lisa,

    I have been following your website. I have a friend with metastatic breast cancer and your blog offers us some very good information. I do hope and pray that the radiation and chemo resolves your health issues. I hope that you will be feeling better in 2015. Stay strong! We are rooting for you hear in Texas!

  • Linda (Bonchek) Kaufman says:

    Lisa, it’s amazing how generously you are able to look at your family’s vacation. I hope they have a wonderful time for them and for you and hope you have good company with you when you’re awake. Best of luck with the chemotherapy and best results all over!
    Love,
    Linda

  • Ana Hays McCracken says:

    Lisa! Thank you for keeping us updated. Big hug to you – for your bravery, and that of your family.

  • Sarah Buttenwieser says:

    Oh, Lisa to more energy and light for 2015. If that comes to you, it’ll have been earned up front. Sending love. And will enjoy photos of the skiers!

  • Elizabeth says:

    Lisa, I am so sorry things are so difficult. I hope things will stabilize soon.

  • marie mccarthy says:

    Thanks for this. Thought of you at Christmas and said a little prayer. Soooo fabulous your family is on vacation. A great gift to them from Mom.
    Did you see the finale of the Colbert Report with the celebrity chorus singing “We’ll Meet Again”? Show was silly, but the singalong was a treat. http://thecolbertreport.cc.com/videos/964kg3/stephen—friends—-we-ll-meet-again-
    Caution, if you listen to this, it will stay in your head for days.
    My very best wishes to you for 2015 and sincere appreciation of your strength, courage and wisdom.
    Marie McCarthy

  • Sharon Martinelli says:

    Dear Lisa,
    I always look forward to your updates and remain in awe of your tremendous spirit and courage – it motivates me to appreciate all the little moments of the day. If there was a way to make this journey smoother for you, I would move heaven and earth, as I am sure hundreds of others like me would do for you. Your gratitude for your caregivers and compassion for your family is a constant. Know that you are so loved Lisa, from your very personal world to the world of us who met you here.
    Sending love.

  • Mandi says:

    One day at a time. *hugs* Best to you!

  • Tracy says:

    I never thought I would!d say this to anyone ever, but I bet you are glad to be back on the chemo since it means a break from the radiation. Ithink it is amazing that you were able to convnce your family to take a trip.I am sure it wasa very difficult decision for them,but probably very necessary.
    I hope for a better 2015 for all of us.

  • Baltimore says:

    Speaking for many, I appreciate your update. Your grit is palpable and admired. I’ll make a donation to your research fund since that is one way this long-distance admirer can turn her feelings into a direct and lasting impact.
    Wishing you many sunny days ahead with your family.
    Baltimore

  • Carole says:

    Your amaryllis is beautiful as is the selfless attitude you have toward your dear family and their need for a vacation. Lisa, I know you haven’t asked for prayer, but ever since I have read of what you are going through, the LORD has you on my mind just about every day and I have been bringing you to Him in prayer. I hope you will be healed, but more than that I pray God will give you eyes of faith to see Him and believe Him for that is the greatest gift one can receive.

  • Linda says:

    Lisa and family, absolutely every good wish to you in the new year.

  • cathy says:

    Hi Lisa. I am a Canadian who stumbled on your blog a number of months ago. I have wanted to email you for a long time, but could not find the words. I feel honoured to have gotten to know you through your blog and tweets. I feel like you are my friend and I feel proud to know you. You inspire me and you make me want to be a better person. Thank you for your wisdom.
    Try and get some much needed rest. And know that there are people like me all over the world whose lives you are changing!

  • Lisa,

    I have written this before and i write it again–you are an Incredible woman. I hope the new year brings you improved health and better days ahead.

    As always, you are in my thoughts,

    Barbara

  • Ellen says:

    Lisa:
    I was so happy to see your post. Been thinking about you and what you’ve been going through. You are an amazing woman. And you make perfect sense to my chemo-addled brain. I hope this latest treatment works and you gain back your strength and a good quality of life soon. Meanwhile, get some rest!!! I will continue to keep you in my thoughts.
    Ellen

  • claudia says:

    Thank you for your honesty and perspective. I think of you often.

  • Sent a comment this evening-but it wasn’t posted-??

    Barbara

  • Right after i sent a message about my comment not being posted, i saw it.
    Sorry about that.

    Barbara

  • frimet roth says:

    LIsa, particularly after reading the egregiously insensitive, ignorant tweets you just received from somebody in Israel I needed to tell you that your message does reach some of us here. I read your tweets and blog post and learn so much from everything you write. Your respect for everybody around you, your acceptance coupled with determination, your grace and dignity, your appreciation of every tiny bit of goodness all inspire me every day. I wish you health and joy together with your family – and supportive comments!.
    Frimet Roth, Jerusalem

  • Kimberly says:

    Wishing you continued strength and peace. My hope is that the worst of your side effects are in the past and you will regain more strength and energy as the days and weeks go by in 2015.

  • Annie says:

    Dear Lisa, you are an inspiration to all of us who are a few steps behind you in our own treatment of mestatic breast cancer. Thank you. Thank you for your posts…even though you are so very tired. You are one amazing lady! Know that someone here in Oregon has you covered in prayer,hope and good wishes!

  • Cathy says:

    Lisa, Your strength and courage continue to inspire. I tried sending you a private message through your contact page, but it didn’t look like it was going through. I therefore tried sending you a message through facebook, and I hope it reaches you. If not, please let me know and I’ll try to resend. Wishing you lot of strength to get through this next phase of treatment. Cathy

  • Kerry says:

    Lisa,

    Every word you write is a gift. You remain in my thoughts and I am hopeful that you will be able to share good news of recovery and stabilization soon.

    Kerry

  • Elizabeth says:

    Thanks once again for the update. Glad that the radiation is behind you. Hope the chemo works wonders and that 2015 will find you doing so much better. Again, sending thoughts and good wishes for only good things for you and your family.

  • Lynn says:

    Thank you for your on-going courage and persistence and for sharing your journey with us all. It is YOUR journey and no one else’s.

    May you have improved health, energy and vitality in the New Year. All my best to you.
    Sending warm and loving healing thoughts your way.
    From another Stage IV survivor.

  • Gailina says:

    I am also from Canada and have been a silent follower for months now, I have never posted before now, for fear I may say the wrong thing and for the deepest of pain I feel, etc… But I also look for your blog and I am going thru alot too but without the support system and love that surrounds you! But I run very strong & have overcome much & I run very deep as a person and I send you with as much compassion & empathy & encouragement & Thanks, just like so many other readers who write you here, who worry daily about you Lisa, and yet all of us keep you so near & dear in our hearts, still sending you written or silent encouragements & positive thoughts your way Lisa! I just like so many here are just truly amazed at your openness & endurance, strengths & complete focus and ongoing education for all who are also going through breast cancer treatments or know of someone, despite your many obstacles and severe fatigue!! Wow!! Is all I can muster!! I am moved by your love & your view of the special things and your posted flowers and the beauty we can all appreciate daily despite any afflictions we may face, that daily something precious is salvageable and still worth the every daily fight to obtain, esp those special moments spent with your precious children!! Your are a permanent fixture in many of our hearts Lisa, so please try to rest & absorb the love, caring & genuine support that comes your way for 2015 & on!!! Be rightfully tired but keep getting back up as you do Lisa, & and we will continue to stand behind you to catch you when a little weak & give you the needed support for you all the way thru this nasty battle!! Much Love and positive energy your way daily!

  • Louisa says:

    Lisa, Thank you for taking the time to write the update…I hope you will find the quiet rest over the coming days so helpful and soothing and also that your family will enjoy their skiing adventure to the fullest….and that you will all reunite with good stories and good energy to begin the new year. Louisa

  • Debbie says:

    Dear Lisa,
    Your website is a gift, and a beautiful exercise in mutual strengthening, charity, and support. Thank you for sharing your pain and grief with your readers, and for providing a wonderful model of steadfastness and perseverance. Your grace under adversity is an inspiration; I hope I may never face your trials (I am NED right now), but if that day should come, I know that it will be easier to bear for your having walked and illuminated that path already; you have shone light on the monster in the dark, and although he is ugly, he is less frightening when seen and comprehended.
    I, like so many others writing here who do not have the privilege of knowing you personally, feel a profound connection to and affection for you. It is impossible to read such honest and soul-baring posts without getting to know, at least in part, the person who writes them. You have my heartfelt wishes that you may be blessed with an abundance of healing, time, and joy in the coming year, and that you may yet see other years dawn.
    With sorrow for your sorrow, and salutations,
    Debbie

  • Alyssa says:

    I don’t know you, but I’m praying for God (and modern medicine) to put your cancer in remission. Keep on fighting <3… you are a trooper.

  • Susannah Fox says:

    Your words and your courage inspire me daily.

  • Sharon says:

    Thank you for sharing your insights and your positive approach to what has to be a very challenging life. Hope the next weeks ease up for you. Best in 2015!

  • Giordana says:

    thank you for the update. I was offline for a little bit and the first thing I did once back was to check whether you had written anything new. I am sorry about the fatigue and the other side effects. I keep my fingers and toes crossed for you always cheering. Love.

  • Vicky says:

    I was in search of comfort and found this blog. I thank you for sharing your journey. I take comfort in your message that even in the mist of illness life continues for all. Reading this blog and the numerous comments from so many compassionate people lets me know that the feeling of being alone is not unique nor true. Many are traveling through illness of self or a loved one. May God grant all peace and fortitude to meet each day.
    Thank you.

  • lovingmum says:

    Hi Lisa,
    I never wrote a message before.
    I read your blog since last year. I am a mum of three children like you and im fighting this awful disease too.
    I am with you in all your thougts and feelings. You are truly amazing.
    Thank you sharing with us your blog.
    I send you all the love and peace.

  • Manson says:

    Lisa – you and Clarke and the kids are in my daily thoughts and prayers! Your strength and courage are extraordinary! Manson

  • Alice Bensch says:

    Lisa, please keep on with your blog when you can. It means so much to so many of us. This is a very difficult journey, not one that any of us would consciously choose and so few understand how hard this is. I personally haven’t had a good result from any treatment. Just started Doxil so we’ll see if that can slow this progression.
    Love to you & your family.
    Alice
    California

  • betty wiley says:

    No one says it better. I am so glad I discovered your blog. You have touched my heart and soul with your gift for writing about your experiences. I was just diagnosed with invasive lobular carcinoma, Stage III, which is ER and PR+, her2 neg, and you are an inspiration. You have expressed, so eloquently, many of the thoughts and feelings that I’m having as I begin this difficult journey through the maze of doctors, hospitals, procedures and everything else that goes with having breast cancer. Everyone has an opinion and “knows” someone who did just fine. Well, I’m not fine but I’m trying to be brave as there is so much uncertainty with this disease. I just enrolled in a clinical trial at Dana Farber in Boston and we are hoping that the treatment will shrink the tumor before surgery. Much love to you. Betty, Cape Cod, Massachusetts

  • Vicki Addesso says:

    Just a “hello” and “thank you” – you amaze and inspire me, and for that I am grateful.
    Sharing your story is so very generous. I have learned so much from you, and I am sure your determination and strength have helped so many others. Keep on keeping on, baby, and I look forward to the next update.

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