Update 8/28/2014

August 28th, 2014 § 71 comments

IMG_8886The last week has been stressful. Unfortunately, my bloodwork shows that the chemotherapy regimen of Carboplatin and Gemzar is losing its effectiveness. It’s time to start looking at options for what to do next.

We watch my tumor markers very closely and check them each chemo cycle (every three weeks). Once there is evidence of an increase in the marker number, my oncologist and I start to construct “if/then” decision trees. I know from earlier this year how fast metastatic breast cancer can spiral out of control. I don’t want to have that happen again if I can avoid it.

There is no guarantee that any given treatment will work. Many chemotherapies won’t work at all. One that works in 50% of cases is considered a great option. If they do work, they won’t keep working. The cancer will mutate, become resistant. We seem to be there again.

There are options to consider: clinical trials, chemotherapy, targeted therapies. Clinical trials are becoming harder for me to qualify for because I have already received too many different chemotherapy drugs. Most of the trials for metastatic breast cancer patients limit the number of chemotherapy agents to two. I’ve already had Xeloda, Taxol, Carbo and Gemzar. I simply can’t be considered for most of these trials.

At this point we are exploring a few options and using the next few weeks to investigate what trials are currently open and enrolling patients (they often take batches of new patients in clusters). The main issue, however, is if they are trials I actually am interested in. I need to look at the science behind each one and try to balance the risk of trying it versus other treatment options. Enrolling in a trial means having a “washout period” with the patient receiving no treatment at all (usually 3-4 weeks) before starting the protocol. This can be a precarious position to put yourself in if you have already been on a treatment that has become ineffective.

So where are things for the immediate future? For now our plan is to go through one more round of this chemo combination but do it at a higher dose and see if we can get either a response or stability at least. That will buy us a few weeks to gather information on what trials are available and what we want to do.

As far as my update for the week, I had chemo on Tuesday and I needed another shot of Neulasta yesterday to boost my white count and thereby restore my infection-fighting capability. The chemo now knocks that down every time and I can’t recover on my own. Once again I will need a transfusion of red blood cells tomorrow because my hemoglobin level is too low. When this happens I don’t have enough oxygen-carrying capability in my blood to allow me to function normally. I get short of breath just walking or standing. This is a predictable part of some types of chemotherapy if you are on them long enough. After enough cycles of constant chemo the body just can’t compensate for what is killed in the collateral damage of treatment. Not all chemos do this, but mine does.

So the news is not what we want. It’s hard to hear. This chemo combination did a great job at shrinking many lesions in a short time. I am functioning in a much better place than I was this Spring, but now I worry that things will progress quickly before we find something new that works. I wonder what will work. I wonder how long it will take to find it, and what kind of shape I will be in when we do. If we do. At this point there are enough options that I do still think it’s when, not if. But this day has come sooner than I’d hoped.

§ 71 Responses to Update 8/28/2014"

  • Tracy Murray says:

    I’m sorry about the stress and the stupid mutating cancer cells. The nice thing about the trials is that it means you still have some options. I hope they find a good one for you quickly and you’re the benchmark patient. The one patient who reacts better than everyone else and becomes the high mark.
    I wish I could send you a little strength and energy to keep you going while your body recovers from this round. Rest well.

  • Hannah says:

    My prayers & healing your way! I’d like to know if your considering any holistic alternative options. I am a breast cancer survivor twice! I hope I can speak with you of my healings naturally!

    • Lisa Bonchek Adams says:

      Nope. Not considering. Period.

      • Lisa Nemchek says:

        Lisa, I know you’re going through a very difficult time however despite this you’ve made me smile w your responses to those who either are praying for you or suggesting healing. This is your journey, continue to do it your way and thanks for reminding people that not everyone believes in God.

  • Linda says:

    Lisa, so sorry to hear of these complications. But do know you are part of the progress, part of a coming solution, making such a difference helping more people develop more understanding of the huge complexities here. Your beautiful strength must see you through.

  • Sionny says:


    • Lisa Bonchek Adams says:

      It’s not FDA approved yet and I don’t qualify for the trials of similar drugs. We are looking into getting it under expanded access though. Thanks!

  • Helen says:

    Dear Lisa,

    I’m so sorry for this difficult news.

    Thank you so much for sharing the details of what you are going through. It helps me to understand better and in some small way, stand with you through it. I pray for wisdom for you and your doctors for the many decisions that need to be made.

    I sure wish that I could give you a hug.

    Love and cyberhugs,

    • Helen says:

      Hi Lisa,

      I sincerely hope that I didn’t offend you in any way with saying that I would be praying for you and your doctors. Definitely not my intention!!

      I came across your blog months ago, and so appreciate your writing and honesty. Having been diagnosed with breast cancer at the end of 2012, I can relate to so much of what you say.


  • Sandy G says:

    Thanks for sharing the update with us. All of your friends here are sending you strength and as you go through the next decision. I am hopeful as I know you are – sending hugs from Oregon!!

  • Dana Metheney says:

    Dear Lisa, Stay strong no matter how tired you get going through this living hell. Your a fighter and while you share your plight you have helped so many understand how fragile life is. My husband is going through chemo for B cell lymphoma now and is already having complications after 5 cycles. I am a breast cancer survivor 3 years out I just get up every morning and put it in God’s hands I block out all of the what if’s and and as long as I am breathing I keep going. Nobody is going to do it for me. Continue to pray for a healing don’t let the devil steal your mind with anguish you know how to enjoy even the smallest event of the day. God Bless you and keep you strong. Sincerely, Dana

    • Lisa Bonchek Adams says:

      Thank you for your words. Just a reminder that not everyone is religious so “putting it in God’s hands” may not be appropriate advice for those like me who do not believe. We all have our own ways of coping, religion is not a part of everyone’s repertoire. I am glad it helps you and wish your family the best in dealing with his cancer.

  • Lisa,
    I am so sorry to hear this news. My heart is with you. I am in awe of your capacity to clearly and honestly communicate the intricacies of your treatment as well as the challenges (both personal and medical) that arise. Thank you for being such a blazing example of courage in the face of this terrible disease.

  • Vicki says:

    Lisa, I am at the same stage of my liver/bone mets…Just completed 6 rounds of AC, and feel I am running out of options. My Onc told me that although we have tried every chemo cocktail available, I may consider trying the first combo I had 7 years ago, Taxotere/Cytoxan, it may not be as affective this time, but may give me some time and that is what I hope for, more quality time. Thank you for writing so openly about this disease and sharing your personal experience. You have been an inspiration to me and no doubt to many many others. Sending healing vibes from California. Peace, Vicki

  • Elaine says:

    As always Lisa, Sending you lots of love from across the water in England. Just wanted to let you know you are forever in my prayers.
    Keep the faith girl ! xxxxxxxxxxxxxxxxxx

  • Caroline says:

    This is crappy news – I am sorry to hear it. But it irritates me that you are clearly someone who is willing to try anything new to see if you have a treatment that works but because clinical trials are so selective (I have never qualified for one ever) that you have so few options to choose from. I find it crazy.

    but big hugs to you. Caroline

    • Lisa Bonchek Adams says:

      Hi, just to clarify, I’m definitely not willing to try anything. I am making decisions based on what seems a reasonable scientific risk to take considering that most trial drugs do not work. I have been on one that failed last year and have already turned down one trial this week. I have many chemo options left to try so I have to balance risk of available trials against those. Thanks for reading. I’m sorry you couldn’t get access to what you wanted.

  • Elaine says:

    Just wanted you to know that keep the faith is in relation to Northern Soul, not anything religious !!!

  • SDS says:

    Halaven? in combo?

  • Joanne Firth says:

    Thank you so much for these words.

  • Karen says:

    Lisa, this is sad news and I sincerely hope that one of the many chemo options you mention helps you. You so deserve that.

    Also, just want to say to the people who write about the God stuff, this is not the place. Lisa has clearly stated many times that she is not a believer, so please give it a rest.

    I read your blog and Twitter feed (daily). You are such a gifted writer. Thank you for sharing your difficult journey. We are all hoping for a treatment that works without diminishing your quality of life.

  • Beth Gainer says:


    I’m so very sorry to hear about this news. I’m sending you warm hugs.

  • Rebeca says:

    Sorry you are getting crappy news. I know you and your team will make the best informed decision you can make. I’m glad you have some options that will give you some time to figure out the next step. I’m thinking of you and your family. Grateful you found the strength to give us an update.

  • jandemommy says:

    I am so sorry that this chemo combination has lost its effectiveness, Lisa. I hope you and your doctor find your next step soon & I truly hope it works for a good, long run. Thank you for sharing parts of your life with us. I learn so much from you & I am sure you give a voice to many people who are dealing with cancer but for any number of reasons are unable to share their experiences. I send good thoughts your way daily & will send extra while you work on your treatment plan. xo

  • Heather Brown says:

    I read your blog post with a heavy heart. I am so truly sorry to hear. I have followed your blog and twitter for some time. I read every it every day. You are such an inspiration to everyone who reads and follows. I have learned so much from you! You gave me the tools and guidance I needed when my best friend had mets liver cancer. I was so wrong in my thinking and actions. All well intentioned but so wrong. I read your posts and they made a huge difference to our last week together. I can never thank you enough for that.

    Wishing you all the best. Many fruitful treatment options and many more blog and twitter posts.

    Thinking of you! BTW – I love the puppy!

  • Cynthia Neal says:

    I have noticed that you say we when discussing your medication. Do you actually research these yourself or wait for the doctor to decide? I have followed your blog and the gentle but realistic way you talk to your children is lovely,kind and so intelligent.

    • Lisa Bonchek Adams says:

      Hi, yes I do use “we” because my oncologist and I are a team. I do research the options she presents in depth and read up on every trial offered to me. I know a great deal about the science of treating my cancer. While I of course rely a lot on her guidance, the best options with metastatic cancer are rarely clear. So she teaches me, I do research, we discuss and we decide together.

      Some patients prefer for their doctors to decide the best course and just dictate it. That works for them and I understand why they might want that. I, however, just don’t function that way. It takes work and also means responsibility when things don’t work. But it’s how I operate. Thus far we have always agreed on a plan.

      In the end, some patients might not want any treatment. Others may want to try a lot. Some might be risk-takers while some might be conservative. The patient gets to make those decisions. Always.

      I hope this answers your question.

  • Elizabeth says:

    I am so sorry to hear this news. Hopefully, you and your team of doctors will come up with a protocol that will work for a long time. Thank you for your updates. I have learned a great deal from you.

  • Sarah Buttenwieser says:

    Chiming in with the love sending and gratitude that you are sharing this (eloquently, how do you do that?) with us. Cancer’s not a gift, but Lisa, you give a gift in the telling. I wish you didn’t have to.

  • maria says:

    thank you again for the gracious way in which you’ve let us into your life, and how you teach and inspire all of us every day. you are with all of us that read your blog and tweets in a way that you may possibly never really know 🙂

  • Barbara says:

    Dear Lisa,

    I am very sorry about this difficult time for you, and hope it improves over the next few weeks.

    You are in my thoughts.



  • Katie says:


    I am sad to hear this chemo cocktail is losing ground, I hope you and your doctors find something quickly to keep the cancer at bay. I will be sending positive thoughts your way.

    I know you are atheist and I respect your position however it seems it really upsets you when followers pray, or bring God up. From reading posts and comments and this is in no way disrespect but it seems people are being kind and sending you kind thoughts in a way they feel helpful or in their beliefs without pushing religion on you.

    I’m curious did you always see yourself as atheist or did being diagnosed with cancer change your beliefs?

    I hope you feel better soon.

  • Margita says:

    Hi Lisa,

    Your resilience and lack of self pity shines through in your writing.

    You will be in my thoughts.


  • Eliza says:

    Thank you Lisa for your frank, honest post, as painful as it may be to write it and live it. I so admire your strength, courage, logical mind, and your gift of giving us this intimate look into your life, living with metastatic breast cancer. I hope you find something else that works, very soon. You are truly in my thoughts. ❤️

  • Jared says:

    That blows. So sorry to hear such shitty news.
    You still have today. I hope it is a great one for you.

  • Marisa says:

    Very difficult news for you and your family. So sorry you have to gather your strength and continue to research and find the best possible option for you. As you said, there are many other things that might be available to you, and I hope that you can find the correct one that will give you relief for many years.

  • Kimberly says:

    Sending PRISHOPE – prayers , wishes & HOPE !!! I am fighting Stage 4 BC too ( 6 years now ) and understand the struggles of finding the right treatment or combo of therapies ! I have been on more treatments ( chemos ) than I can remember 🙂 – but still made the cut for the TDM 1 trial ( Kadcyla ) & was on it for 2 years thru FDA approval. It kept the cancer in my lungs stable – but caused pneumonitis 🙁 – so , like you , had to make changes again. Please remember too – that tumor markers are not always reliable – have you had a scan to actually see that your current tx is not working ? Wishing you strength today & everyday !!

    • Lisa Bonchek Adams says:

      Tumor markers are not reliable for everyone, that is very true. But mine have been carefully watched and we have correlated them for two years now with scans and symptoms. They have been absolutely valid indicators of what is happening. Of course no decisions get made without using multiple data points. The value of then for me since they are true indicators of trends is that it is an early warning of what is happening to give me time to decide. Scans can’t pick up all changes and you need longer intervals to see if a treatment is working. It’s very helpful that mine are spot on for my cancer’s general activity.

  • Amy says:

    Once again you write with such elegance and clarity. May you find the treatment option that works for you, giving you time with your beautiful family.
    Tonight I will raise my glass to you…and hug my own dog a little tighter.

  • Michael Schubert says:

    Sorry to hear of your troubles. I have been reading your posts for a while and you are wonderful. My wife seems to be on a parallel course. She is on her 9th line of treatment and is just finishing Gemzar. It did not work and it had a bad affect on her liver. She has tried most all the options and we are also down to clinical trials. Our doctor is trying to get her on Neratinib from Puma biotech as this is supposed to be the new Herceptin and will be matched with Perjeta which she has had before. She has been lucky as her overall health has been good. She only has several small lessions in her lungs but they have recently become several more. Looking optimistically, they are still small. We are looking for clinical trials at UCLA medical center. If she gets on the Neratinib I will let you know how it goes. I hope you have success with your new treatments.
    Love you.

  • GiGi says:

    Thank you for sharing what is obviously not good news. I hope that you and your docs are able to find a viable option very soon. You are in my thoughts very often and I gain strength from your courage, passion, and grace.

  • Teresa says:

    All day long I have been thinking about what to write to you in response to this post. I know I am not an elegant writer but I know you know that, and you know that in spite of my inelegance with the written word, my heart is with you. I’m sorry that this is such a stressful time and I wish with every fiber of my being that it was not this way. I admire your unflinching honesty, how you share the details of all the steps you are taking and the decisions you are making. You are making a difference in people’s lives even as you endeavor to sort out what your next steps might be. I love you, my friend.

  • Hi Lisa, None of the oncologists where I am treated rely on tumor markers to make decisions about treatment. Your bloodwork must give very accurate indications about the effectiveness of your treatment because you did not say anything about having any scans to confirm what the bloodwork has shown. Or, are there plans for you to have scans soon? I am hoping the bloodwork is wrong.

    • Lisa Bonchek Adams says:

      Just wrote a reply above to another commenter about the markers. I know many doctors don’t use them and in some people they are not at all reliable. They are for me, every time, based on years of correlating them with scans and symptoms. They are spot on for me and better than scans in some cases since there needs to be critical mass for a lesion to show up in a scan. They definitely aren’t useful for everyone but they have been a vital piece of information for me, giving me early indications when treatments are working or failing. I know that isn’t the case for many people.

  • Kristin Laferty says:

    Hi Lisa- was wondering if the drug Halaven (eribulin) could be an option for you if you choose to not go on a clinical trial for next step? Halaven is a non-taxane microtuble dynamics inhibitor and demonstrated stat sig overall survival in 3rd line metastatic breast cancer. Just a suggestion and thanks for your posts- you are such an inspiration to so many people and sincerely appreciate your willingness to fight and share your journey with the world!
    Kind regards,

    • Lisa Bonchek Adams says:

      Yes, as I mentioned to another commenter it is definitely in the “options” category. The issue is that each chemo I add may further remove me from trial eligibility so I have to time them right. Thanks.

  • Deborah in Montana says:

    Hi Lisa,

    I just read your new post. Thank you for the update. I wish there was something we could do for you.

    I’m concerned for the women who are putting off mammograms (like I did) and believing there’s “A CURE” (should we ever be diagnosed) thanks to the cute little pink ribbons floating around the world along with t-shirts which refer to breasts as “Ta Ta’s.” Breast cancer has been “cutesified.” Is that a word?

    I recently found Angelina Jolie listed as a “Breast Cancer Survivor.” Jolie-Pitt is missing an opportunity to educate and inform women publicly that she was never diagnosed with breast cancer, but chose to remove the tissue which was of great threat to her, due to genetic testing which revealed she has a very high chance of one day…being diagnosed with breast cancer. She could also provide statistics:

    What I’m trying to say is the statistics don’t lie. 80% of women diagnosed, have no family history nor do they carry a mutated gene. The lack of factual information provided to women is shameful.

    I have two daughters. They will be getting mammograms earlier than recommended, because they know their risk is higher as a result of my diagnosis. I never considered breast cancer a risk before my diagnosis and never considered a mammogram important. I was diagnosed after I found a 2 cm tumor. An MRI found a separate DCIS before surgery (mammogram didn’t find). Recently, I had a biopsy in my other breast and I have Atypica (changing cells). This, right after finishing chemotherapy. Obviously, the chemotherapy didn’t wipe out those “changing cells.”

    I doubt you or I will ever know what caused our cancer (undiscovered genetics, pesticides, etc.). That is today’s reality.

    I am glad to see you flat out refusing to have well meaning people interfering in your treatment (request above…). I had a lady buy me a book to read by a women by the name of St John, who claims she had breast cancer (no biopsy needed of course!) and healed herself with diet, coffee enemas and juicing (basically). I read it. It opened my eyes. What a crock of crap. The woman is now counseling people on how to cure themselves without modern medicine. Apparently her counseling shop/store hasn’t been shut down by local, state or federal government. Apparently she was broke until she “cured” herself of cancer and wrote this book.

    I do believe there are foods which are powerful and even believe a cure may come from nature. Sloan Kettering did a study on Turkey Tail Mushrooms. Though more studies need to be done, it got my attention because it was based on science. I’m taking these every day though I don’t believe they will cure my cancer. It’s called reality.

    I do wonder, how many lives will be lost due to this author’s “counseling” and the numerous other individuals making a buck off desperation and despair.

    Thanks for sharing.


  • Sorry for the repeat question. Somehow I missed Kimberly’s comment and your reply.
    Thanks for taking the time to reply to mine as well.

  • ashley says:

    Dear lisa, im.sorry too….one of the options you choose will work until it doesn’t ..then another ..putting one fire out temporarily until the next one lites up..my sister in law stage four on a trial…they switch it up all the time..she is a physician as well…knowing so much as you do!!!! My thoughts are always with you and her!!! X x ash

  • Victoria says:

    I am so sorry to read your latest update. I am so impressed with your attitude though, no anger – just always pressing on towards options. I hope you and your family have a wonderful Labor Day weekend –

  • Natalie says:

    Dear Lisa,
    I have been following your website since I became aware of it in January, and I will continue to do so. It is meaningful, helpful, moving, and interesting. I sincerely wish you all the best that life can give you, and fingers crossed for new combos that work!! Thank you.
    With love, from far away,

  • sheila says:

    Hi Lisa – I really don’t know how I found this blog…perhaps one of my searches after a friend was diagnosed…or another friend had to get a biopsy. I guess I was searching for information so “I” wouldn’t feel so anxious and “I” could be part of a better support system. The information you provided has been invaluable….and, along the way I also got to know you. Thank you for reminding me to live everyday to the fullest. And Yo! Sports analogy – You are the Quarterback on a team and I am in the stadium…cheering you on! And on!

    Best to you Lisa….


  • annamaria says:

    … a big hug …
    Annamaria from Italy

  • Molly says:

    So very sorry to hear you are having to move on to a new course of treatment. But the trust you have in yourself and your ability to navigate around trials that you don’t think are viable for you is inspiring. All anyone can do is do the research about options, weigh the pluses and minuses, and then make a choice. But your strength of will, your clarity in your approach to all of your life choices, your big heart and willingness to share of yourself — I feel so blessed to be able to read your posts and all the responses of those who care. I’m about to find out tomorrow if the Taxol I am on is still working and am so glad to have your thoughts to strengthen my resolve that whatever the news, I will be okay and continue to work my way through this.
    Thank you, dear Lisa, for sharing your journey with us in such a meaningful way. You’re like the beautiful flower you posted, beautiful and shining, with a strong and thriving center to your life. That has carried you through highs and lows, and will continue to nurture you, and inspire us.

  • Diane says:

    I wish cancer had never happened to you and I wish you all the strength you need dealing with this awful disease. Posting must be difficult for you when there is disappointing news but the information you share is helpful to many other women. Thank you! I hope you understand that those of us that rely on our faith in God mean no disrespect to you by praying for you. The well meant prayers and good wishes come from our heart. Of course you are free to believe or not believe. My thought is that if I were in a desperate situation I would rather take the chance that there is a God since it wouldn’t hurt rather than find out in the end how wrong I had been. I and many other people believe because we have experienced so many examples of God’s love even during terrible circumstances. I apologize if this offends you because I do not mean to do that. I hope you find another med that will have really good results for you. Best of luck to you!

  • Olivia says:

    Thinking of you Lisa, With love from Iceland

  • Chris says:

    Hi Lisa, my wife has luminal a stage 4 mBC. She has lung, bone, liver and brain metastasis. Stopped taxol/avastin in May 2013 but continued on Avastin only with letrozol tablets. Markers reduced, lesion on lung not significant and brain necrosis is managed. Avastin only is not a NICE drug body regime but oncologist at The Christies, UK are seeing excellent results from it. Something to consider. Take care, Chris

  • Kelly says:

    I have followed your journey for so long…and now I’m listening to your tweet about commenting to someone or something online. Please know that your beautiful, intelligent words and your heart-wrenching and lovely poetry touches me deeply. A day doesn’t go by that I don’t think of you numerous times during the day. You inspire me to be better.

  • David says:

    Hi! I just started reading your blog and was wondering if you’ve tried natural remedies since 5 different chemo drugs haven provided you with good results? I’d recommend looking up [redacted] and reading his blogs.. And the survivor stories on his site. Keeping body PH at an alkaline level by consuming alkaline forming food and staying away from acidic.. Cutting odd red meat and dairy, etc. Chemo is not the only option for treating cancer.. It shouldn’t even be an option if you ask me. Hope you look into alternative medicine and nutrition 🙂

    • Lisa Bonchek Adams says:

      It’s true, chemo is not the only option but you state that it “Shouldn’t even be an option if [I ask you].” Now that you say that, actually, I didn’t ask you. And that it shouldn’t BE an option is so absurd that any other advice you have is easily ignored.

      Yes, I’m getting tired of people (especially those without metastatic breast cancer of my particular type or lacking any medical degree) giving out advice on what I should risk MY life doing to treat my cancer. This blog just reports the decisions I have and the choices I make. I don’t expect anyone to either read it or agree with me. Take it or leave it. But do so without leaving unsubstantiated recommendations in your wake. If you have cancer and want to treat it that way and/or write about it, good for you. I choose not to read those posts and I don’t make comments on them disparaging those choices. But if you come here and write it, that’s another story.

      Just think how feisty I will get the longer I live… #somethingtolookforwardto

      • Sarah says:

        Is it possible that he meant chemo shouldn’t be an option because there should already be better treatments developed? Chemo saved my life but I agree that harsh chemos shouldn’t be necessary. There should be more successful treatments that don’t come at such a cost.

        • Lisa Bonchek Adams says:

          The rest of the comment does not make me think that, I’m afraid. I have re-read it a few times and I just don’t have that interpretation at all…

          • Barbara King says:

            With you all the way, Lisa. That’s dangerous stuff for someone to dismiss chemo — to dismiss science– in that way and more to the point, to insinuate that you are making wrong choices for your own health. Here’s to more feisty years!

  • txchick57 says:

    Wow, that’s way more diplomatic than I would have been 😉 I love the juicers. They’re really crazy.

  • Molly says:

    Good for you, Lisa! You have shown remarkable restraint but I hate to see you expending ANY energy responding to any judgments. It’s clear from your posts that you do all your homework and make each decision based on what is best for you. I just can’t believe that people go beyond offering unsolicited advice, but tell you what you SHOULD do, let alone spout unfounded “facts.”
    I have had Stage IV breast cancer for 4+ years, currently on Taxol, and have to deal will lots of side effects. Some of the time I let comments like you’ve gotten just slide past me, but when I am feeling exhausted, nauseous or in a lot of pain, it drives me crazy.
    I belong to an online advanced breast cancer group (where I discovered wonderful you and your posts) where two important things were shared. One is called the Spoon Theory (thanks to post by R) which gives a great example of how exhausting doing little things during the day are difficult, with the person starting with a fist full of spoons begins to give them up, one at a time — one for a shower, one for getting dressed, one for fixing a bowl of cereal, etc. I had closed friends thank me profusely for sharing it with them and they said they got it, for the first time, how exhausting EVERYTHING can be even the fun things.
    Forgive this long post, but the other one should apply to all of us responding to you. I think it’s called the Ring Theory. Imagine concentric circles with the person who is ill in the center circle and those closest to her or him in the next circle, the next friends, then acquaintances, co-workers, etc. The principal is comfort in, dump out, and I think anyone can find it by googling How not to say the wrong thing, the ‘Ring Theory’ of kvetching. by Susan Silk and Barry Goldman.
    You don’t need to read this, Lisa — you’re in the center of your set of circles, and you understand it anyway. And because you get it you don’t need to have to have a filter suggested when you are interacting with someone else in the center of another circle. But some of us responding to your posts need to think about this. Wishing you peace as you make YOUR way through YOUR cancer treatment choice. I celebrate you and admire you.

  • LeslieC says:

    Hi Lisa – I stumbled upon your blog when I googled “Affinitor and side effects” – my mom is on the Aromosin / Affinitor cocktail right now. She was diagnosed with Breast Cancer in her bones 5 years ago. To this day no Mammo or MRI has found it in her breasts. I just wanted to say how much I appreciate your detailing your experiences with us and how beautifully you do so. There is a sign up at my mom’s hospital that says something to the extent of “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.” You my dear have certainly done that. You are an inspiration and I am so glad I found your blog. Incidentally – when my mom was first diagnosed 5 years ago at 78, a group of my sisters and friends began saying a novena that Padre Pio said daily in his lifetime. Not sure if this is your thing or not, but in case it is, wanted to share the link. http://www.goperri.com/padrepio.html It worked well for us. God Bless you and your family, {{cyber hugs}} Leslie

  • smarie says:

    so, Im really sad she passed away. But one thing really bothered me reading her blog. Sometimes because you have a certain kind of desease, that doesnt entitle you to be offensive to people who, maybe with a good heart out of compassion, offered her advice on different treatments. She depended so much on science, that killed her. She rejected everything that wasnt science. What about quality of life? Again, I’m very sorry she passed away! But she was harder to certain people who wanted to help her. One person adviced her to try natural remedies, which are proven to heal cancer, at least, live with it until you die but with quality of life, and she said straight “no, not an option.. Hey, maybe if you are humble to see people’s true intentions, that would have given you another chance.
    I dont say she was a bad person, she was a fighter indeed, but some things didnt clicked while reading her blog. I hope her family can find peace, strenght and closure these days.

    • Lisa Nemchek says:

      How dare you be offended by her responses to people with their advise! Just because we have cancer does not mean we have to be prey to everyone with their advice regarding religion, natural remedies, etc. do you have any idea how often people offered her this advice? Her blog was her way to tell her story not to get your advice.

    • Molly says:

      Please – please – keep your judgmental and unfair criticisms to yourself. Your comments are a perfect example of why Lisa wisely chose to steer clear of folks offering unsolicited advice, offering cures and treatments that had no basis in science…a d why she also steered clear of people pushing their own narrow religious beliefs on her. I celebrate what you are criticizing Lisa for.

      • Deborah in Montana says:

        Lisa made her own choices. Her personal life was not an open book.

        I do remember reading several responses she made to posts regarding personal beliefs and alternative treatments, which I did feel were sharp.

        During the past year, I’ve read posts made by well meaning people who wished her a speedy recovery (you don’t recover from metastatic cancer…), asked God to “Bless” her (Lisa did not believe in God or Jesus) and of course, shared alternative treatments (Hey, Sloan Kettering sure wasn’t offering a cure).
        I have breast cancer. The next door neighbor’s college age daughter told me that marijuana has a chemical ingredient in it, that would cure my cancer. LOL’s Marijuana lowers the immune system (think T CELLS) which KILL Cancer Cells). I simply thanked her for the information.
        I can remember Michael Landon as a guest, on the Johnny Carson Show. He shared with everyone watching that carrot juice would cure his cancer. The carrot juice was probably very healthy but it sure didn’t cure his cancer.
        I don’t believe Lisa created this blog/site to provide a place for us to pretend superiority with condescending language.

        I’m grateful to Lisa for all she shared.


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