Update 4/27/2014

April 27th, 2014 § 140 comments

IMG_8374It’s been a long time since my last update. The weeks have been very tough and I haven’t had the energy to do much of anything, much less update the blog. I have switched chemotherapy agents to Carboplatin and Gemzar. These are given in a bit of an unusual schedule: both drugs the first week, just Gemzar the second week, and then a week off to allow blood counts to rise back to (hopefully) normal levels. I will be starting my third cycle this week.

I’ve had tremendous fatigue and the palliative team is trying some medication to hopefully help with this. There still may be effects from radiation weakening me (fatigue from high doses of radiation like I received to my spine and pelvis can last up to six months they say) and of course when certain blood counts drop it makes you feel just tired and rotten. I fervently hope that the medication will help and I will be gaining some strength and energy soon. It’s been such a long few months. Good news is that radiation did such a great job on the two areas that I’ve been able to completely wean off of pain medication. The pain I have from the current tumors throughout my body does not require medication right now. I know that will change as those tumors grow, but the gradual weaning process I have been doing for the past 3 months has been a huge success and I’m so glad to see the vertigo and other side effects from the pain meds disappear.

On the flip side, while the pain component has been a success, the last few weeks have been fraught with some unexpected problems. For the last month I’ve been seeing specialists and having tests to figure out why my voice has completely deteriorated and I also developed a varying left eye droop and lack of dilation in the left eye.

After a brain MRI to rule out a brain metastasis the doctors have determined that it is actually a malignant lesion in my left chest causing Horner’s Syndrome in my eye. The lesion is also pressing on the nerve cluster that controls my left vocal chord. It’s not totally paralyzed yet, but they say that it is on its way. My voice is almost completely unusable in any situation with noise (ordering in a restaurant is impossible, being heard on the phone is difficult, etc.). I can get out a strong whisper to a quiet raspy voice for about ten to twenty minutes in the morning sometimes but communication outside the quiet house or after twenty minutes is very, very hard.

I already do know there are things like voice magnifiers or computer generated voices. I know they are out there but I am not ready to use them. The damage will almost certainly be permanent they tell me. Swallowing will become more difficult and dangerous as the chord deteriorates. There is an injection they can do to stiffen the chord but at this point they are not ready to do that because I won’t get any additional improvement over where I am now.

The lack of voice limits further the amount of social contact I can have these days and the energy it takes to communicate is magnified because breath control is reduced so much. I will go back in three months and we will re-evaluate. Even my voice isn’t off limits to cancer it seems. I really just feel a period of stability would be so welcomed.

The rest of my family went to Florida for Spring Break two weeks ago while I had my tough week of chemo and some appointments with specialists. I was so glad they could go get some sunshine and  respite from the stress that I know my situation brings. It is so important to me to try to always look at things from their point of view and know what this situation asks from them. I wish I could be a better wife and mother right now, but wishes don’t count for much I know. It was hard to miss yet another family trip, there have been a few this year.

I try to get out once a day but I tire easily and usually am not able to get out on chemo weeks (more than 2/3 of days). Walking and standing are still my challenges. I continue to be very isolated. My daily life of exhaustion, immunosuppression, chemotherapy, and treatment effects keep me chained to cancer, much as I hate to be.  I try to be as independent as I can, not ask for help often, and keep my thoughts to myself about what is happening and what is yet to come.

For now, I keep plugging away, hoping the new chemo is continuing to work and doing the best I can even when things seem stacked against me. My medical team continues to be warm, caring, and helpful and I am so grateful to them and to you.

Things are very hard right now. It takes all of the strength I have to get through each day doing things I otherwise would be giving little thought to. I miss that part, the carefree, energetic part of me I had.

For now, I just keep going, doing my best. It just is going to have to be good enough. Spring has been lagging, the garden isn’t flowering as it usually is. The days have been chilly and nights sometimes still have freeze warnings. Let’s hope by my next update the flowers and I are both blooming a bit more.

§ 140 Responses to Update 4/27/2014"

  • Cecily says:

    Oh, lady. I am thinking about you a lot and sending love and good thoughts. It sounds so fucking hard. I’m so glad you shared this with us.

  • Marisa says:

    Lisa, such hard things for you to be experiencing. I appreciate the effort it took to share this part of your story with us. I wish that very soon some physical comfort will come and stay with you for a long while

  • échappée panonaise says:

    i don’t speak english but i read your blog and i love you
    annick

  • Sue says:

    Nothing I write really expresses what I feel. I’m thinking of you and wishing you some of the normalcy you crave. xox

  • Sandy G says:

    Lisa, I have been thinking of you and wondering how you’ve been. You have faced some challenges since the last post. I’m pleased you are able to share the latest with us as you are in my thoughts often. Sending love and hugs from Oregon to you. The temperatures will warm up and the flowers will bloom just for you!!

  • Champagne Joy says:

    Thinking of you, praying for you, sending you love.

  • Just sending so much love during this very challenging spring. I am holding both eyes and my heart open for all the blooms for you.

  • Yolanda Davidson says:

    After having read this update, I don’t know how you mustered the energy to write it.

    Lisa, no one can imagine the isolation and loneliness you must be feeling. But I am sure your beautiful circle of family and friends want to be there for you and support you in any way that is meaningful to you.

    It hurts to read about you being so brave, stoic and concerned about burdening others. I don’t practice the act of ‘prayer’, however I can tell you that I am going to do my best to send ‘vibes’ your way to return your strength and your beautiful voice. I can imagine your logical response to this:) I know. But it certainly can’t hurt to try. Big hugs from across the oceans, Lisa. Goodnight. Xx

  • Katie Rosman says:

    Your vocal chords may be diminished but your voice most certainty is not. We hear you, we sense your isolation, we ache to find ways to ameliorate it.

    You are the beauty in my life and the lives of so many. I purposeful don’t say you are “a bit of beauty” because the magnitude of your aura and the power of your being are not incidental.

    • Laurie Woo says:

      Katie’s comment perfectly expresses what I feel, too. For me, I think the feeling of isolation I experienced during tough cancer treatment was the worst thing. Hard not to feel depressed all the time!

  • Carol Graham says:

    Lisa,
    Once again, as always, your writing is eloquent and meaningful. At once I empathize with you, and think about my own troubles. Many of mine will resolve. I can’t imagine how hard things are for you, and I would be happy to change things for you, but I can’t. I hope in some small way my best wishes will give you some pleasentness it what right now is certainly not. Just do the best you can, we are all rooting for you.

    Your cousin Carol

  • j says:

    Yes, what Marisa said. I’m (always) so grateful for the time and effort you put into your posts. You are so often in my thoughts. Sending you so much love. xoxo

  • Elizabeth says:

    Oh Lisa, I read you post and can’t find the words to tell you how sorry I am for everything you are experiencing. I just found your blog last weekend and am so inspired by your strength and courage. As a stage III breast cancer patient with an aggressive tumour I live in fear of recurrence. I have a GIST at the esophageal junction and the latest scan shows something around my duodenum that they want to look at. Enough about me, I hope you find strength from family and friends, new meds and your medical team. You are so kind and thoughtful to think of others at this difficult time. It must have taken a lot of strength and time to write this post. I am thinking of you from British Columbia, Canada often.
    Love and hugs to you and your family,
    Elizabeth

  • Lisa says:

    You are dealing with so much. I guess that’s the nature of metastases. I can so imagine the wish for just a period of calm. Thank you very much for taking the time to update us. May the sun shine soon.

  • Caroline says:

    As said above, cancer is so lonely sometimes. You are in a very tough place but you keep going and going.

  • Tami G says:

    Lisa, nothing any of us say can change your life but everything you say changes ours in some way shape or form. Your words transport us to a place that none of us ever hope to be but without a doubt some of us will find ourselves, or those we love. I’m wishing you peace and calm even in the storm.

  • Adriana says:

    I came across your blog by accident a few weeks ago, and have been overwhelmed by your strength and your positive attitude during such difficult, trying times. Your voice continues to be quite strong as I read it on my screen – You writing is so heartfelt, so visceral, so raw, and yet there’s such beauty in your words, and so much hope. I wish you spring blooms during this long winter stretch in your life. You’re an inspiration!

  • Random person says:

    Thank you for writing and telling your experiences to us. Your voice is heard. I hope for more good days for you soon.

  • Lisa Belkin says:

    Oh Lisa, I am so sorry that life threw all of this (ANY of this) at you. Ironic that now cancer is taking your voice. But it can’t take your VOICE. You have changed so many lives, made so many strangers into friends, given so many women the realization that they are not alone. (And made so many of us get those damn mammograms. Mine was Friday. I thought of you.) Sending virtual hugs. If there is anything more I can do (I hope there is) please ask.

  • Pris says:

    Sending positive thoughts and vibes your way.
    Thinking of you.

  • I always wish you love & light; I pray for you, I do.
    Please keep thinking about love & light just for you.
    For 3-5 minutes a day just think about you, not the cancer, the pain or the future, but just you healthy and doing your favorite activity.
    Cancer cannot take your soul, and it’s obvious from your writings you will never let it.
    I do admire your strength.
    My friend, who has stage 4 brain cancer has finally stopped googling the worst cases scenarios of brain cancer. We all know the worst stories of brain cancer are only on the internet, the good ones rarely make it on the web. So this is good, and she’s finally going outside more and even made it to her favorite restaurant “Olive Garden” (I know yuck, but it makes her happy lol). She’s a lot better, mentally and this is the best thing we could hope for now.
    And spring is coming, it’s just that winter over-extended it’s stay aka ‘the houseguest that wouldn’t leave’. ;-)
    Here on the cape we’re still in the 40′s & 50′s. I think it’s the 6-month winter?
    <3

  • Dee says:

    Lisa,
    I am in awe of your honesty and courage because they give a voice and promise to those who feel they have none.
    Sending you love and light

  • christine says:

    One of the reasons I find your posts so compelling is that is shatters what we want to believe about living with advanced cancer. Like if we practice our Lamaze breathing, labor won’t hurt. Or if we are open to our experiences and loving and loved that cancer won’t pull us from our moorings. But your words don’t let us live in that denial. I feel helpless because I know my patients feel what you describe, there is no word for it other than suffering. I can soften it in some way but I can’t prevent it. Thank you for powerful lessons. May you find some moments of peace and beauty in your world today.

  • Jennifer says:

    Dear Lisa,
    Thank you very much for your words. I read them intently and I am wishing you the very best. Keep fighting.

  • Jenny Murphy says:

    Love to you. Thank you for your honesty and grace.

  • Dee2 says:

    Lisa: I continue to be in awe of your strength and courage, and I hope you know that you have a legion of people around the world who are praying for you. It’s amazing to me, that in the face of all you’re dealing with, you can find the positive. I hope the warming Spring light will shine upon you.

  • Kirsty Aversa says:

    Lisa,
    Your words are beautiful and come from your “heart” not just those ill-affected vocal chords. You share wisdom and speak with such grace. As do so many others, I wish you an increase in strength and a chance to blossom just as those spring flowers do. Thank you for sharing your story. There are so many of us who live in the fear of recurrence and it is through your words that our family members’ eyes are opened too and we appreciate the moments we do have. Sending you well wishes for shrinkage and less pain and side effects. Rest and regain your strength.<3

  • Anne Thrall-Nash says:

    Thank you for using the little energy you have to continue to share your story. Your words continue to help cultivate understanding and empathy for those of us who have been blessed enough not to face your challenges. Many blessings of strength and love to you and your family.

  • Doreen Hand says:

    Lisa- you are being an amazing wife and amazing mother! You are fighting! Staying positive and providing all the love you have for your family. A close friend of mine here in Hershey,PA just lost her husband to a quick 9 month battle with cancer. She has three young kids-12,9 and 6 and every minute that their dad fought his battle was a positive one. He might not have been at every game, event or trip- but he was there to cuddle and listen when they returned. Know that you are doing everything you can! You are an amazing person! None of this makes any sense—it is not fair! Always remember you have all the love, strength, prayers and support near and far! Nothing is to big or small an ask.

  • Varun says:

    thanks for the update, it just touches the heart. God Bless. Grateful to u for making an ignorant like me to understand a bit, what a cancer patient has to go through. just praying for the strength

  • sallybr says:

    Lisa Belkin said it beautifully – nothing will take away your VOICE

    I’ve been thinking of you a lot – anxiously waiting for updates. I don’t comment much, in fact hardly ever, but for whatever is worth, you are always on my mind and I wish you did not have to go through so much suffering.

  • Amanda says:

    I know (or kinda know) that wishes don’t count for much – but I still cling to your daily mantra/quote.
    Amanda

  • Lisa – I’ve been checking for your updates every week and worrying about you. Thank you for the latest – your writing voice is strong and thoughtful, and much appreciated by those of us following your medical sojourn. We are with you!

  • Melissa says:

    Lisa, thank you for the update. I’m so sorry things are so tough for you right now. I am praying that you will get some relief from all this shit that cancer keeps throwing at you (is it wrong to mention praying and a curse word in the same sentence? I’m not religious so sorry if I’ve offended anyone!) Praying and sending positive vibes and whatever else I can send your way. I am sure it probably doesn’t change your isolation, but please know that I and many others, think of you so very often, that when you are feeling lonely, you are on our minds.

  • Laurie says:

    As always, thanks for writing.

  • Pam says:

    Oh, Lisa–

    I am sorry you’re having these challenges. Thank you for mustering the energy to write an update for us. It means so much.

    I think of you every day. xoxoxoxo

  • David Davidson says:

    Your updates are difficult and painful to read. I so wish there was something we could do to change the course of this dammed disease. I hope it is helpful to you to know that I am one of your thousands of loyal followers who think of you every day, hoping your days are as free of pain and as cheerful as possible.
    We all love you Lisa!
    David

  • your dedication to your blog – a source of comfort, inspiration, information, hope, education for so many – is amazing & wonderful! sending healing vibes, hope, & wishing you peace & strength. Rock on, baby!

  • Diane says:

    I am thousands of miles away and have never met you, but I think of you daily and am so grateful for your wisdom, insights, thoughts and willingness to share all this so honestly and generously.

  • Becky says:

    I love you so much, Lisa.

  • Holding you up in my prayers.

  • Janice Soll says:

    Sending love.

  • Dan Porterfield says:

    Lisa–All of us at F&M send our love and care. Thank you for each and every post. Your voice creates great good in the world….

  • John O'Neil says:

    You may be lonely, but you make us feel less alone. And your honesty is a gift to all who believe that hope is best served by realism.

  • Lisa, Keep fighting girl! Sounds like you have some pretty good doctors around you. Hopefully you do but don’t ever be afraid to ask questions. Let them know what’s going on in your mind and in your body. Nobody knows but you.
    My wife, Donna Marino, wasn’t so lucky. She had 3 terrible doctors that basically didn’t know what they were doing but their ego’s and their greed kept her from getting the right treatments. Although she was an amazing wife and incredible mother of our 3 children and the most courageous, fearless and strongest person I have ever known, she lost her battle on June 17, 2013.
    I wish you the best of luck and hope that somehow you get past this and are able to live a full life.

    Tom Marino

  • Kim C says:

    I hear your voice as strong, clear and resolute as ever. Your voice of truth is an offering of light and wisdom in an otherwise vast and dark abyss of ignorance.
    Thank you for every single word, Lisa.

  • Sarah says:

    Lisa, I haven’t commented before but I wanted to say that I think you are truly wonderful, in terms of both how you cope and how you share with us your feelings and experiences. I volunteer at a local cancer support centre here in the UK, and I have learned so much from your writing about cancer, suffering and how to support people in difficult situations – through your openness and honesty, you are giving a generous gift to the world. I really wish I could magically make everything well for you. I know I can’t, but I think of you often, and send you and your family love, continued strength and every good wish, Sarah XXX

  • kath says:

    Hi Lisa,
    You are amazing. I rarely comment on someone’s blog but I finally had to put “pen to paper”. I’m sure you get lots of emails and tweets similar to this and it gets a little wearying to be “inspiring” to others when you’re having such a hard time so I’ll see if I can put this in words that don’t make you feel like I’m nominating you for sainthood! I never cease to be moved and impressed by your tenacity, resilience and dogged determination to keep going, keep trying and find beauty and positive moments and even a laugh in the midst of what must be some incredibly dark days and nights. Your blog post reminding your readers to be grateful for the mundane moments in life is one that struck home for me and that I find myself re-reading and reminding myself of regularly. I have struggled with a chronic illness and related depression and have found it so tough to feel isolated and on the outside, like, at times, I don’t even belong in the world “out there among the regular people” but now, when I can go for a walk or meet a friend for coffee or even work a little I think of you and how much you would love to be doing those simple things and I’m reminded to look around and be so grateful that I have this opportunity. I think of people in hospital beds who would like nothing more than the exquisite “boredom” of a normal day at the office or the joyful “frustration” of carpooling kids to soccer and piano and playdates. You have profoundly changed how I look at my situation and I wanted to thank you for that perspective in just that one, insightful post. I also feel that if my time comes to deal with a more serious illness, I have learned valuable lessons from you about everything from the practical side of dealing with specialists and advocating for yourself as a patient to embracing the parts of your life that you can still enjoy and how important that sense of normalcy is in these situations. I know a complete stranger’s opinion is not Earth shatteringly important but I really feel strongly that you have changed me and how I look at life and how I will care for friends and family when the time comes. That, to me is a pretty powerful “legacy” to leave and I wanted to thank you for it. I also, like you, am an atheist, so I can’t say that I pray for you but I can say I think of you every day, like I’m sure so many of your followers do. I check in and see if you’ve only posted your morning reminder, it’s probably a tough day and I wish you peace. If I see you’re posting more, I’m excited to think that maybe you’re getting a well-deserved easier day. I may not believe in God, but I do believe in energy and I am sending positive energy your way with wishes for more, healthier months and years, time to enjoy your beautiful children and maybe even some “stable” times when every day doesn’t have to revolve around how you physically feel. I think so many people hear your voice and your message: appreciate your life and your health and soak it up with gratitude.

    I hope tomorrow is a better day than today was

  • Susan Zager says:

    Lisa I am sure this was difficult to write and you certainly have so much on your plate. I know you are surrounded by family and friends who love you dearly. How incredibly special of you to insist your family go on a vacation while you know how much they care about you. The harsh realities of this disease are extremely disturbing. I am sorry about your voice but I still hear you, and as I wake up every day I repeat your words: “Find a bit of beauty in the world today. Share it. If u can’t find it, create it. Some days this may be hard 2 do. Persevere.” Thank you for sharing. You are beautiful! xoxo-Susan

  • Liz says:

    Dear Lisa, Thank you and thank you and thank you. I came across your blog just before we lost my beloved 49-year-old sister to ovarian cancer last summer. Anne died after a truly hellish two and a half years, leaving a much-loved wife and a daughter not yet three years old. Cancer is so devastating and the treatments for it so barbaric. My sister was a doctor and like you was dedicated to speaking the truth about this disease and the experience of living through it and living into the end. The world needs to hear that it’s not all pink ribbons and “good attitude.” Anne, like you, was “brave” because she had to be. She worked hard to live in every minute left her, to take joy in her daughter and her family and friends and the simplest pleasures–one bite of fresh fruit when that was all her body could take, a rare few hours when she could do something as delightfully normal as walk outside or go to the food coop. But the best doctors in the world (which Anne had, as you do) were still constantly tested by what this disease can do. “Managing” pain and fatigue is so much more complicated than people think. Even with the best care you can lose your voice, suffer terrible fatigue (and the word “fatigue” is far too weak to describe what she and you are going through) or, as Anne did, lose your ability to eat and digest the fruits that she, as a vegetarian, had always loved. My heart aches when I read your blog because I watched my sister suffer and persevere just as you are doing. I am sure you are aware of the effect you are having on thousands of strangers like me, people who have been hungry for honest voices about cancer. But for me reading your blog has also been one more way to feel close to my wonderful sister, to honor what she went through. I don’t know if she read your work, although I think it’s quite likely she did. She would have been grateful as I am. Being with her through her years of struggle, helping my sister-in-law raise Anne’s beloved daughter, have given my life a sense of purpose and value which I think of as gifts she gave me. Cancer itself is never a “gift.” It does not invite us on a “journey.” It is evil without having any intention of being so. It merely is. But you and my sister and all the rest of us who have been besieged by this terrible disease learn because we have to: We are in this together; our lives deepen as we help each other; our hearts are changed forever. You have changed our hearts.

  • Kristin says:

    Your strength and courage are inspiring. Even in this difficult situation, you’ve summoned the energy to update us; we are grateful for your selflessness. I check your blog and twitter every single day, hoping for some relief for you. So many of us read your precious words and we HEAR you. Your voice still carries far and wide.

    Wishing you moments of beauty and the stability that you deserve.

  • Kate says:

    I started following you and your blog soon after my diagnosis … Your strength is amazing and if I end up in the same hideous situation as you I hope I have your strength to carry on .. Good luck xxx

  • Carla says:

    Hey there! You’re one awesome woman and I am sending you lots of love and healing strength. I admire you, and I love that you keep it real. This isn’t easy stuff to write about.

    Hang tough

    Xo

  • Elyse Boria Black says:

    You have been added to every prayer group I know…for through the power of prayer everyday hold the possibilities of a miracle…much love to you and your family

  • Katherine C. James says:

    Each day I think of you, Lisa, and send you wishes for comfort, peace, and beauty in your days and nights. I am in awe of your honest, spare voice, which continues to speak, and will continue to speak, no matter what happens to your vocal cords. I read every post. I admire you. You affect those who know you—your family, friends, community—those who read you, and, in ever-widening circles, those who will be changed by those of us changed by you. What a difference you are making in the world. Sending you admiration and support. xo.

  • I’m sorry that your going through such a tough time, I would like to thankyou for making me relise how lucky I am you see I’m going through a bitter divorce I’ve been living with a drunk for to long, enough was enough 5 weeks back when I finished it. its the hardest thing I’ve ever done in 33 yrs of being with him, but its good for me to relise I’m ok I’m not going through a illness like you my prayers are with you x

  • joAnn says:

    thank you for your writing and I wish my good wishes could actually help you.

  • Taylor says:

    Love you Lisa

  • Adela says:

    Lisa,
    Thank you for sharing with all your story. I am glad I stumbled onto your blog. I understand what you are going through. I, too, am in the same situation. Everyday can be a challenge. You and your family are in my prayers.

  • Regina Lupo (@ReginaLupo) says:

    You amaze me. All that you are dealing with you do with such grace and selflessness. I know you didn’t apply for the job but you are a great inspiration to so many people.I know prayer is not your thing,but I do pray for you,that your energy and strength return and for the cancer to be eradicated allowing you to get your life back like it was before.

    xo

  • rachel says:

    Lisa, I will continue to pray for you. It took a lot to share this with us and you are a very strong and determined woman and I know that you will keep trucking a long but please know that Prayers for comfort and strength are being sent to you. Thank you for sharing your life with us. Your voice is louder than you may realize.

  • jenn says:

    thank you for the update; thank you for writing despite the pain and fatigue; my thoughts are with you and your family so often. xo

  • Kris Simmons says:

    Thank you for writing this, Lisa; I cannot imagine what it took. How generous you are to us, as always. I was just talking about you earlier today with my husband: in particular, the education you give us about palliative care. So it was nice to read your update out loud to him just now so that we can both think about you and send good vibes your way.

    I wonder if you know how much I think about you and your lessons. I’m a copyeditor for JAMA, and your voice is in my head as I work on specific kinds of articles. I have a friend with a chronic back condition; your lessons have helped me listen to her and talk to her about her isolation. I wish I had any way to give back to you what you have given to me over these past few years.

  • Barbara Shernoff says:

    Lisa,

    You are always in my thoughts. Sending you my very best wishes.

    Barbara

  • Michael says:

    Please believe that your thoughts and actions in your minute by minute pursuit of living are rippling and cascading through your followers to thousands across the world. I believe your actions are giving birth to good deeds & love that will be resonating and benefiting others for years to come – you have achieved immortality.

  • Carol Perez says:

    I am so sorry for the pain and loss that you are experiencing. Wishing for you strength, peace and a cessation of pain and suffering. I truly hope you get a break–you have certainly earned one with your struggle, patience and fortitude.

  • Robyn Greenspan says:

    Every time I see a blog update, I am hopeful that this is the one where you let us know that you’re better; you beat it and are finding your way back to a life where your only worries are muddy paws, weeds in the garden, and kids’ homework assignments.

    I’m visualizing that future for you, but until then, take gentle care.

  • Shelley says:

    Lisa, I’ve been following your blog and twitter feed for the past few months. I am so sorry that you and your family are having to experience this. My mom died from cancer, almost a year ago now. That time with her, the cancer time, was filled with moments of love, humility and gratefulness, intermixed almost with anger, frustration, despair and fear. She was not interested in “battling” or “journeying” and did her best to live each minute as well as she could. Although we talked regularly, I know she kept much of what she was thinking about to herself. I miss her greatly, and reading your blog has helped me better understand some of what she may have been feeling and thinking. I have appreciated these glimpses and realize they would not be possible if you were not willing to reach out and share your thoughts so honestly and openly. Thank you.

  • Michael says:

    Lisa
    I was very happy to see your latest post as they all are. My wife has also recently been switched to Carboplatin and Gemzar. Unfortunately she almost past out during her second dose of the Gemzar. She is going to be re-evaluated to see what cocktail will be used. She also has low blood counts and fatigue. You are very strong and I know it takes a lot out of you post these updates. We all love you are always thinking of you.

  • Jennifer B. says:

    Hard to fathom the courage involved in sharing these posts. Thank you. I hope the flowers bloom very soon where you are.

  • James Mwangi says:

    Hi Lisa,
    Your candid post is a sure testament of the inner strength that you apparently possess. Taking the time to author this article while fighting the negative effects of chemotherapy is something very encouraging and highly motivating. Your diminished vocal cords’ effectiveness has not in any way reduced your zeal for communication. Thank you for sharing this very inspiring personal life story and I sure hope for your quick recovery.

  • GiGi says:

    Lisa: Your voice is strong and heard by so many and I thank you. May you continue to find the strength and comfort you so deserve. I send my prayers for better days.

  • Joanna says:

    It’s so good to get an update from you Lisa. I’m so sorry to hear about your fatigue, voice and eye. From watching my mom go through cancer, I see firsthand how difficult side effects and setbacks can be, especially for someone who is otherwise completely independent. I hope you find some comfort in knowing that while this disease does take over the lives of everyone involved, the people who live you want to listen. Want to be there for you. Want to feel like they can help in at least some small way. This is what family and love are about. My heart aches for you. I hope you find some relief soon.

  • I hope so too, Lisa. I can’t stand that cancer has left you voiceless.

    Wait — not voiceless by a longshot. Just volume-less.

    Hugs, flowers, and always juice art to you, except that we broke the juicer…of course. Will send our next kale-orange-pineapple daisy when we get Omega to pony up. xo

  • Dear Lisa, So far I have been a silent visitor to your blog, always making aspirations for the best of outcomes for you in this path of life, admiring your honesty and bravery and your capacity and generosity to share your most vulnerable moments. Today I decided to send you all my love and best wishes and lots of hugs from Mexico, where I’m from. Here’s thinking about you with a deep heart of gratitude and love, Adela

  • Ken Silverman says:

    God bless you and I pray for you and your family.

    You are one tough lady.

    Keep on fighting.

  • Meg says:

    Sending good thoughts your way, Lisa. Your words are so powerful. Hoping for a bit of peace and stability for you.
    Meg

  • Thank you for the update, Lisa.
    I was looking at our bradford pear trees this morning, noticing that they’re beginning to blossom, and I couldn’t help but think of you. In fact, whenever I “find a bit of beauty” in my day, throughout my day, my thoughts always turn to you. I think… “I wish Lisa could see this!”
    Your garden will soon bloom. The sun will soon warm the earth around you. I hope you’ll be able to snap a few photos when those blossoms do arrive! You’ve such a beautiful garden.
    You’re in my thoughts, always.
    xo
    -P

  • Anna says:

    Sending love and light your way. Thank you for sharing and do again when you can.

  • Antonia says:

    Thank you for using your precious energy to provide this update; I am so grateful for your efforts and honesty. Despite all you have experienced these past months, your voice comes across strong and bright through your writing. I am sending love and good wishes from out West (and hopefully some sun, too).

  • Karen Collins says:

    I had been hoping for better news for you. You have my admiration and sympathy. I hope each day is just a little easier!

  • Qurban says:

    Thank you for sharing. Honestly I can barely read each entry these days – I wish life didn’t send us these kind of impossible but here it is anyways deal with it challenges. Your writings share beautifully someone going through this process. Ease to you and your family.

  • susan says:

    Just wanted to say how much your words matter to me. Thank you. And sending love from Brooklyn.
    Susan

  • Lisa, I wish you a period of wellness and stability that will take you far beyond the blooming of the flowers. And, please know that while your physical voice has been quieted to a whisper, your “true voice” is as strong as ever. Many, many people hold you in their thoughts, hearts and prayers.

  • Gail says:

    Katie Rosman & Lisa Belkin said it best: Your VOICE will always be heard.
    I cannot pass a new bloom on any flowering plant w/o thinking of you.
    And, every day I, like countless others, look for a bit of beauty and think of you.

    xoxoxoxo

  • Elizabeth says:

    Thank you for the update. I am so sorry that things are not where you would hope them to be. Hopefully, things will start to get better for you and you will be able to enjoy being outside. As always, I wish you only the best and a much easier road in the future.

  • Tammy Riise says:

    My thoughts and prayers have been with you and your family every day. I had been praying that you would have the strength to blog soon. Thank you so much for your update and sending prayers for you and your flowers to both be blooming soon. ((HUGS))

  • Wendie says:

    I have been following your blog for months now. I am hoping for sunshine, flowers, and peaceful days ahead for you. What a struggle this has been. Thank you for sharing your experience and inner strength.
    I am so sorry that you are dealing with this.
    xo

  • I’m so sorry to hear that you’ve had a discouraging and immensely difficult spring. Sending good thoughts your way.

  • Christine says:

    Dear Lisa even though it’s not the best update just so happy to hear from you. I only wish I could mske it better. I am on my 2nd roundup of chemo also and the fatigue is the worst. I have about 2+ down days one ok day and then it’s time for chemo again. Like you I just want to plant in my garden and move with out pain. I pray your stability is around the corner I know you need it. I hate this disease and what it has done to women like us. Keep fighting. I will be praying for you.

  • Angela says:

    Lisa, I have been reading your blog for a little while. I wanted to say that I love how real you are, and how open. I also wanted you to know that your spirit inspires me. You make a difference, in so many ways, and to so many people. I will think of you in the spring blossoms here where I live, and hope that the flowers bloom in their full and vibrant glory for you very soon. Thank you for sharing your journey with us. And for being the person you are.

  • Nokwanda Mtshali says:

    As I was reading through your post, I couldn’t hold back my tears. Knowing that there is someone out there like you, who is dealing with so much but still has the strength to share their experiences with others is just amazing. I pray that God keeps you and heals every part of your body, that you may live to share your love and inspire others who are in your situation. We all love and pray for you,thank you so much

  • Kelly Westover says:

    Lisa, I have been wondering how you’re doing because things have been quiet on your end lately. I cannot add much to what has already been said in the comments here, but I too am in awe of your strength, love and beauty. All I can say is that I send you my love and in that love also I send energy to you. You are in my heart every day.

  • Gail Speers says:

    Lisa, Thank you for sharing so openly what is happening and the challenges of coping with this dang cancer. I share your journey and take for granted some capabilities I know will seem insurmountable at some point in my future. I’m glad your family has had a small break to come back refreshed to be there for you. It is instinctual to protect them by not letting them know all your thoughts. One family I know wished their Mom had shared more of her thoughts esp about death and what happens after we die. Personally I think we all get to choose what we believe. So I was surprised they felt this way. I share this only to encourage you to ask your family if they have questions you can answer now while you are able. Wishing you less pain and more peace. You have already so modelled great strength and grace. Gail (a bc mets sister)

  • Gerri says:

    So much has already been said…It just seems so cruel to lose your volume on top of the rest. That must add to the isolation.

    I hope that you catch a break soon.

  • Andrea Sutherland says:

    A mutual contact asked me if I was connected to you, JM. Love the bloom photos.

    I liked the “things” not to say. It just reminds me, that people in an attempt to make themselves less uncomfortable about you or me too, say some really unhelpful things. I have an interior laugh when I am asked “do you get get mammograms?” I resist saying, do I look that stupid? And say yes instead.

    I am taking a different tack on this voyage, no more cytotoxic chemo. I tried the anti- estrogen drugs, and so it was easier to enjoy my life than live with the side effects that are not curative.

    I did try rads for pain relief with no benefits but plenty of fatigue – so glad to hear it worked for you and then turning the opiates down. Congrats!

    The Pallative team is great- nice to have more people in your corner.

    I was diagnosed stage 4, in 2010 right out of the box. There is some surprise I am still alive, in light if my stance.

    Take care Andrea

  • Elizabeth J. says:

    Lisa, so sorry cancer is taking your voice now. Hang in there. Prayers for you. God bless.

  • Dear Lisa -
    Your wise words and strong presence inspire me and so many others to see beauty and love in the world every single day.
    Thank you.
    I’m sending you a huge hug.

  • Every day I hope to see a post from you pop into my reader and yesterday there was one. I read it immediately, re-read it, and popped back today to re-read it again. Words fail me in expressing how sorry I am that things are so hard right now. Cancer is a fucking thief.

    I hope that there are moments of each day that are less painful than others, where you are able to feel the warmth of the sun and the smiles and brightness in the faces of your children.

  • Selma says:

    Recently my 37 y/o sister was diagnosed with DCIS and she is now preparing to have only the affected part ( a node) removed. After reading your story, I will press her to get more information about her case. You did not need to share your knowledge and suffering. A lot of people decide to go through all of this privately and I respect them. But what you are doing is so extremely generous than I have no words to thank you. So I’ll just send all my best energies to you and your family. Warm wishes and all my admiration!

  • Ellcee says:

    Lisa, I came across your website while reading about bc. I am 4 months post bilateral mastectomy with exchange surgery scheduled for June. Your story scares me, but it has also made me reconsider taking a hormone medication that I had decided not to take. You are probably saving lives with your beautiful, honest posts. I am wishing you the very best and praying for a miracle for you.

  • Thinking of you lots and appreciate your letting me in. Thank you for sharing these details. Yours, Christina

  • Jen says:

    So thankful for this update. I miss seeing you online & IRL. Hoping for continued improvement. xoxo

  • Kim L says:

    Sending many prayers for you and your family. I can’t imagine the energy it takes to write your posts. I had two blogs and have ignored them for some time because it was easier to just quit trying to explain things or remember things that happened in order to write it all down.
    I am thankful for your honesty and truly wish cancer did not have the power to take away so much from any one person. Hoping that you can feel the love of many even if we are not there with you.

  • I have been trying to think of a response to this update that would make one damn bit of difference, and I have been failing. This is all so unfair. I hope for brighter, warmer, more energetic days ahead. xoxo

  • Taelor says:

    You are amazing. I wish I was able to put my thoughts together as eloquently as you do, but I cannot. Please know you and your family are in our thoughts and prayers. You are inspirational and I feel honored to be able to read about your journey and learn what a truly incredible woman you are. Sending soooo much love your way!

  • I wish you loving and zealous caregivers who anticipate your wants and needs and who skillfully lift pain and fear while increasing your joy and feelings of being loved and safe at all times.

  • jo says:

    I’ve been following your blog for a while now but have not commented until now. I was worried when you hadn’t posted in a while and was relieved to see this new one but saddened things are so tough for you right now. This is such horrible disease. I’m almost 17 years post diagnosis, had a scare last year but am very lucky all is good now. I cannot even imagine what you are going through. It’s been said many times, please know that you are thought of daily. I wish you better days ahead and thank you so very much for having the courage to put all this into words and sharing. It means so very much. Hugs x

  • […] A long-awaited update from Lisa Adams. […]

  • Beth Gainer says:

    Lisa, I care for you so much, and my heart broke reading this post. I hope things get better for you — you have had your share of suffering.

    You are a great wife and mom, always thinking of your family’s needs. Don’t be hard on yourself.

    xoxox

    Beth

  • Marty Hanna (@MercyWoman) says:

    Lisa, I am so grateful for your posts. I cannot otherwise imagine what you are dealing with. My thoughts and prayers are with you. May you find those times of “normalcy” and physical energy you crave.

  • marli says:

    What an amazing and inspiring woman.
    I admire your strength and intelligence.
    God Bless you always!!!!

  • alexandra says:

    I am grateful you have this place here, to connect and keep you company. Though I am nowhere near your situation, for me, blogging came at a time when the isolation from depression was becoming something I almost couldn’t function from. My blog saved me. I hope it does the same for you… that’s my wish… it sounds like it does keep you company. I read your entries, and whisper that we help you, in some way, by being here for your words. xo

  • Amy says:

    Lisa, you continue to amaze and inspire me every day. I hold you in my thoughts every day, wishing you peace and as much ease and moments of joy with your family as possible.

  • Christie says:

    I think of you so often.

    As the mother of an F & M daughter, a Lancastrian and also another non-theist walking this earth I feel we share many things. I have no prayers but I do have sincere hope for a glorious outcome for you. A chance to tip the scales and show the experts you not only have fought the hard battle but have come out on top.

    My hope is that you will smile when you see this little video. I will leave off the end /corgi and you can add it back on so it doesn’t open fully here. Enjoy.

    http://uproxx.com/gammasquad/2011/06/important-biology-news-ducklings-imprint-on-a-

    Spring is here

  • Susan Buchan says:

    Dear Lisa

    Thankfully, I stumbled upon your blog for the first time today. How I responded to your voice. I googled: “in bed, without energy,” and somehow ended up with you. And what did I find: Hope, energy, courage, honesty, love–and, understanding, so that I will not be so hard on myself. I even went to WordPress, to try to have a blog, too, but the required technological capacity is beyond me at this point.

    I too have been going through a tough patch. My elderly mother died here with me September 13th, and instead of better, I keep getting worse and worse. The only goal I seem to be able to hold onto and reach is to buy on Amazon–365 orders in the past 6 months. My only “friend” these days is the UPS man who comes to pick up the returns.

    As a psychologist, like your Mother, I understand what is happening to me, but have had a hard time feeling compassion for myself. I want to tell you that spending time with you, and your being with yourself and your life, day by day, minute by minute, where ever, what ever it is, gives me hope that I can do the same. And, hopefully, like you, I can find purpose in my and our suffering. I send you love and respect. I honor you.

    Susan

  • Carole says:

    Lisa, I hope this is a good day for you – that you are able to enjoy your children on this special day. They are blessed to have a mother who goes way beyond the extra mile to be there for them in a very difficult situation. May you feel their gentle love for you today in a wonderful way.

  • Frank says:

    Lisa, sorry you are feeling like crap, my heart goes out to you. I was reading your blog to get ideas how to write my own blog about living (and dying) with prostate cancer and I have to say that you write very well. Just know that if you lose your ability to speak, the community and I hear you clearly! Best of luck and the strength to keep fighting.

  • Summar says:

    Lisa, I continue to keep you and your family in my thoughts and prayers. I just completed 3 weeks of radiation to the hip and L4 which wiped me out, and I just can’t imagine chemo on top. I can relate to the difficulty in not even having energy to write, socialize, be with the family, etc. My heart aches to know you and so many others deal with this accumulation of losses in life, due to MBC. And your voice? Really….salt in the wound. Sending encouragement, strength, and holding hope for improvement.

  • Connie taylor says:

    Lisa, my heart aches for you. Aunt connie

  • Friend says:

    I just wanted to thank you for sharing. I often don’t know what to say or what will help and what will hurt, and your postings give me courage to be a better support to my friends diagnosed with cancer.

  • Maya says:

    Dear Lisa,

    You are so brave and honest. This is such a tough situation. I very much hope (some) chemo will start working…I was diagnosed around a year ago ( IIB at 36 with a small chid). I am well aware of how serious this disease is and know every case is different. Still wanted to ask about your experience (Not sure if this is appropriate to ask) do you regret doing the Ovarian Suppression? Is your cancer also strongly progestrone sensitive? Please accept my apologies and ignore my question if you do not feel answering for any reason.
    Wishing you the best,
    Maya

    • Lisa Bonchek Adams says:

      Short answer is that I have a mutation in my cancer evident in genomic sequencing that means even though I’m ER/pR+ even with ovary removal or aromatase inhibitors the pathway is still activated to fuel the cancer. So it’s not the typical situation. I don’t think most surgeons explain the severity of the side effects associated with oophorectomy for young women though.

  • Maya says:

    Thank you very much Lisa! Really appreciate your answer.

  • cm says:

    Sending you love and strength.

    For all of us reading this inspiring blog, I’d like to suggest we each click thru on the link to the Memorial Sloan Kettering Cancer Center-Lisa page and make a DONATION. It could literally buy someone more time…..

    xox

  • Vickie says:

    I am just 5 mths out from chemo and bilateral mast after stage 1 dx. I read your blog bc I recognize you as a valuable, loving human who has been dealt a rough rough hand. And it could be me only God knows. So I look to you for guidance and inspiration. I’m praying for healing and for lack of suffering. Hugs from another pink sister.
    V

  • Marci says:

    You came to my mind today, in a very urgent way . You are often in my thoughts over these past 4 years since finding you online . I just wanted to remind you that strangers deeply care, your sisters in cancer journey care , that those who pray are praying hard and those who’s hearts are connected to yours will never forget you . I will never forget you and hearts everywhere are pulling for you, loving you and ever so grateful for you .

  • Tina says:

    I came across your blog, saw this post and couldn’t leave without leaving a message. I sincerely hope you are feeling just a wee bit better now, some five weeks after you posted. Please do not think that you are not a good enough mother/wife, as it is obvious from your blog that you are both. You go out of your way to make life as ‘normal’ for your children as possible and spend as much time with your family as you can. Big hug from a stranger (((((((((Lisa))))))))).

  • Mimi Brophy says:

    Lisa I just wanted to take a moment to let you know that I am yet another of the many who wishes we could change your world! Love, peace, and hope are among the things I wish for you.
    Mimi

  • I just found your website. I am so sad for all that you are going thru. I am also sad for your family. You all are in my prayers.
    My 36 year old son was recently diagnosed with undifferentiated cell lung cancer. As you know, it is devastating to hear a cancer diagnosis. Our lives are forever changed in every way imaginable. However, I cling to small bright moments. One of those moments was when I found your blog today. I am so fortunate. You and your family are truly an inspiration. Thank you for sharing your journey. Peace be with you.

  • On this glorious day, as one of the innumerable who your writing has so touched, I just wanted to send along good wishes and prayers for comfort and better health.

  • Lisa, I have been agonizing over the fact that you haven’t posted since April. Others mentioned you are on Twitter, but I am not so don’t know what is happening with you. Your last post on your blog was so raw and honest, so painful to read and I’m sure painful both physically and emotionally for you to write.

    Jesus, how I wish for a magic wand to make all this go away. You wrote of your isolation and of gradually losing your voice. I hope (but don’t pray) that since you wrote you have regained some strength and that you have had some periods of respite and joy.

    So many people love you, people who have never met you, never will. But that is the effect you have had on others. You are widely and greatly loved. Count me among their number.

  • Emma Gibson says:

    I am compelled to write to tell you how your blog and twitter posts inspire me. Both myself and my sister were diagnosed with breast cancer last year, within 6 weeks of each other. My step Dad now has prostate cancer. Reading your words has been a powerful, healing force as I try to recover physically and mentally. What you are doing is so important. You are brave and beautiful. Thank you.

  • JoAnn Kirk says:

    I really dislike Twitter so am putting a comment here……

    I do not think it is helpful for cancer patients without access to “big name” medical care to be told that their community doctors probably do not know about trials or the latest information, etc. Don’t they feel badly enough already?

    Not everyone is fortunate enough to be able to zip into Baltimore or NYC to be treated for their cancer and recurrence like you and I did.

    It’s all a crap shot anyway, no matter who you are or where you go.

    J

  • Lisa says:

    I am so very happy to hear this:).

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