Once again, it’s been a while since I’ve updated. Somehow most of you know that with me usually no news does not actually equal good news. Before I give an update I want to remind readers that I do update the blog Facebook page (click here to reach it) with short medical updates more often these days if you are interested.
Most of the last three weeks since I last wrote have been dealing still with swelling and blood count issues from radiation and from the extensive disease in my liver that we are working on with the radiation and with chemo. I’ve needed numerous transfusions of red cells for anemia and quite a few for platelets which have really come under attack. We have been taking a break from the Epirubicin and I got a dose of Faslodex (I had it last year as well in a clinical trial with a trial drug, this month I am using it with a daily pill, Letrozole). Rather than being cytotoxic chemos (traditional “cell-killers”) these are anti hormonal agents. We are just trying to let my body recover now for a few weeks.
Last week my abdomen grew and grew with fluid from the liver and overall inflammation. By the end of the week I had an abdomen the size I was when I was ready to give birth. The skin was painfully stretched. We needed to intervene. I went to urgent care for evaluation for a paracentesis (draining/”tap” of fluid). My platelets were too low. They transfused and I just made the cutoff. The process is pretty simple: visualize if the pocket of fluid is drainable (tiny pockets would not be) via ultrasound.
Three needles of increasing gauge are inserted to numb through to the pocket. A catheter is inserted and attached to a drainage bottle that has a bit of vacuum to draw out the fluid. Two and one half liters later we were done. It is a huge amount to see. I did have soreness at the site and discomfort from such a lot of fluid removal after. But this is a very common procedure with metastases to the liver (please, please remember: breast cancer that metastasizes to the liver is not liver cancer. Mets to the brain are not brain cancer. They are breast cancer cells that have moved in the body. There can be/are big differences in terms of prognosis, treatment, chemotherapy agents, etc).
Some patients only need a few of these abdominal taps. Some need them every few weeks depending on how chemo, etc. are working. Sometimes a drain is actually placed to allow a constant ability to remove fluid.
If you were following me last year you know I had a drain placed in my lung while in the hospital that accomplished something similar. I was fortunate to only need that one for a few weeks (I had already had a one-time tap on my left lung called a thoracentesis). For now there are no plans for a drain or other more serious interventions in my abdomen. Now that my potassium levels are holding steady we are using diuretics to manage the issue.
We are working on the plan for next week, it is likely that I will be going back to a chemotherapy called Xeloda (these are pills taken daily) for a bit because it is gentler on blood counts. I’ll update when we have a decision on that.
I’m weak, still unable to drive, or do much more than walk than to the bathroom or a car that is picking me up. I’ve had to adjust some things at home including bathroom rails and so on. Safety is most important and especially with very low platelets falls and any bleeding or injury risk is a serious concern.
I’m sure I’ve forgotten something (or things) but I do want to get this out today. I see snow out the window but I’m still focused on Spring. These hydrangeas in my room this week reminded me March is not far off.
Thank you to those near and far for all different kinds of support given this month with an extra shout-out to my wonderful team at Sloan-Kettering. If any of my doctors, nurses, or support staff there are reading this: you help make these tough days better. I value your care always.
Link to Twitter
As ever awed by your ability to acknowledge the amazing people surrounding you, the smarts you display and graciousness in sharing with all of us. Sending love always. You’re in my thoughts daily. The word gentle in this post and the purple blue flowers, sending those wishes too.
Cancer is revisiting our household for the second time. Tired of talking about it, I’m thinking about capturing the rollercoaster of my emotions on paper. Tell me about it, that six-letter word sure does pack a powerful jolt! The kind that violently knocks you off your feet.
Having stumbled upon your blog, I’m encouraged as a caregiver by the armor of strength that sustains your battle. You are in it to win it!
Grateful for the update, but hate that you’re in such pain and discomfort. Love you so much.
Sending hugs of strength your way.
❤️ you
Oh Lisa, my heart aches for you and all that you have to go through, and for your family as well. I so hope these interventions will soon give you some relief. Cancer is not fair, not fair at all.
So glad you’ve gotten some relief since the fluid was drained. I wish I were within striking distance to help you out with whatever you and your family need, but it’s wonderful you have people to step up. Just do whatever you need to recover your strength. Focus on those beautiful hydrangeas. XO
Best to you and your family. You are in my thoughts.
God is with you
You could have fooled me.
(((hugs)))
Holding good thoughts for you in my heart as we brace for another snowstorm this weekend.
I imagine your children may be on school vacation next week. I don’t know what that means for you, but I hope it’s a good week.
You are amazing in your resilience and strength even through these very difficult treatments. I send you all that another person can send in hopeful and positive thoughts and prayers.
Warmly
Carol
Lisa bonchek, sorry as I am for you and anyone else suffering as you are, I can’t help thinking that you are very abrasive to people who make innocent comments. Not everyone is an expert on cancer as you are, but it’s very boring when you continually pick people up for not knowing some fact or the other. Most people are only trying to be helpful in clouding Emma Keller who really didn’t deserve the bashing she got.
Two thoughts: if you are talking about the HuffPo journalist yesterday who gave scientically incorrect info about what kind of cancer I have and what metastatic breast cancer is, that isn’t nitpicky.
If you are reading anything I say and don’t like it please unsubscribe, unfollow, stay away.
How you think a comment like yours is anything but negative and also think EK deserves defense from what she said last year, I don’t know. I will leave it there.
Lisa: this is your blog. Can’t you please delete posts which are simply inappropriate? Pleeeeeeeeeeeeeease Lisa: don’t waste any energy over people who cannot distinguish between right and wrong. Not one little bit of your energy. Keep it for yourself and your family. They are not worth it.
If you wrote an article about life we’d all reach entnghleiment.
AKAIK you’ve got the answer in one!
i cant take my eyes off …gosh have never seen such beautiful and gorgeous sponge and frosting cake in this blogsophere till date..priti u have really nailed it ..how lucky ur frend is tht u made such lovely cake for her ..im j ;)i loved it and bookmarking ..will try the forsting as im soo bad at it 🙁 ..u have done so neatly and evenly ..hats off to u !
Renewing Promise of ‘Change,’ Obama Tries to Reset Agenda Obama Changes Message, Trips Up By Jillian Bandes The AR Response to the 2010 State of the Union Address by Jeff Schreiber
There are plenty of other blogs to read please go read one of those. This space is reserved for Lisa’s friends like myself, others going through this who need a connection and the kind world who know that Lisa needs this space. I can not believe this comment. I have known Lisa through my entire cancer process and I have gotten nothing but support and kindness. Please try that you would be amazed at how much better you feel.
Lisa, as always love and light to my dear friend xo
Goodis rules! DId you know that BLONDE was really written as another book before this? Disregarded by Warner Brothers, it morphed into BLONDE. Did you happen to see the documentary of DAVID GO8I#S&DO230;To A Pulp?
Totally agree with you Paula and Emma Keller for that matter too.
If you cannot be supportive to Lisa, you need to go away.
If you agreed with Emma Keller, you should have left long ago.
You do not deserve to benefit from Lisa and her wisdom.
ICYMI: The Public Editor of The New York Times and the “Reader’s Editor” of The Guardian were critical of both Kellers after their stories appeared in their publications. Subsequently, both Mr. and Ms Keller were banished from their respective news organizations after their piling-on of Lisa.
More than one year later Lisa continues to live and to educate and support those confronting this wretched disease. The Kellers have not been heard from since.
You use the blog of a woman who at this time is under unimaginable stress and pain to tell her that she is abrasive? If that isn’t an example of massive projection, I don’t know what it is. THAT is abrasiveness and cruelty on a scale one fortunately is rarely forced to confront.
Tom I agree. Remember in kindergarten you were taught “if you don’t have anything nice to say say nothing at all”? This should be pushed even harder here. Do NOT add to my friend’s stress. You do not have to read this is all I keep saying!
Thanks for being a resource as alwaysh
Praying for you! Spring does make me feel better too!
Sorry that the news isn’t better. Hopefully, the next phrase will be easier on you. Your strength amazes me.
Thank you for updating. Thinking of you and your family
Once again, a thorough clinical take on your status. I know you are helping so many others with your honestly. wish it were easier for you.
Lisa,
I have followed you for 2 years now… I cannot begin to tell you how inspiring you are to me. You and your family are in my thoughts daily!
Thanks for keeping us posted and as always, trying hard to send healthy, positive energy your way.
As always, thanks for update.
Thanks for the update. Sending good thoughts your way.
I hope someday that cancer can be prevented or easily cured . I feel for you and the others who have to go thru all this. I send you and your family good wishes as always and want to thank you for your blog and twitter postings.
Thanks for providing an update
Hugs to you !
You are an inspiration and a source of comfort to a great many people. Your children are blessed to have you as their guiding star.
Hoping the the promise of spring around the corner helps even a little bit during these rough times. Your fortitude is tremendous.
Thinking of you often.
Thank you for your medical description of your treatments. It provides pharmaceutical oncology researchers like myself a patient’s perspective. You put a human aspect and inspiration to our lab work. I hope your body heals some in light of your next treatments.
Lisa,
I’ve been following you for awhile, but this is my first post. I’m constantly amazed at your fortitude, strength, willingness to share all the darker sides of this disease – as well as the brighter moments. I have friends and family (all maternal cousins, younger than me) who have been afflicted. Fortunately for them, it was caught early and/was an “easier” type to treat.
If I’m ever stricken with cancer, and I had a close call with a predecessor to uterine cancer, I hope that I can approach and deal with it as you have done with yours.
Ever hopeful that the right treatment is found so that you may live to see your children do all the things that moms should see them do.
With great admiration,
Dorothea
Thinking of you and hoping you regain some ground in the next few weeks
You teach us all so much! Thank you!
I know I’m repeating myself, but there isn’t a day that doesn’t go by that I don’t think of you. You have educated legions of people about cancer, metastases, medications and just plain navigating the maze of health care. I, like everyone else, wish you weren’t speaking from first hand knowledge.
Your love of nature’s beautiful flowers makes me think of you every time I see a bud. Your love of corgis makes me think of you every time I see a photo or see one waddling along on a walk. I try to find a bit of beauty in every day, no matter what.
Peanut butter cups and pickles always make me think of you.
Love you, Lisa. xoxo
Hi Lisa,
I’m very sorry to hear that your cancer back. I can’t imagine what it must be like to go through this.
My mother is in a similar situation. She had stage 3 breast cancer 3 years ago and they removed her breast and ovaries and kept her on hormone suppressant pills.
2 weeks ago we found out her cancer came back and it’s at her liver. The doctor said it’s for sure stage 4 and we are waiting on results from the biopsy.
Forgive me as I didn’t have time to read your blog but I thought I’d ask you if you have ever heard of immunotherapy. If you did, did you talk to a doctor about it? Did you try it?
From what I understand only 2-3% of cancer patients take part in immunotherapy trials due to the lack of awareness of immunotherapy. I almost know nothing of immunotherapy but I thought it might help you in your situation. I’m going to look into it for my mother’s situation too. These are a few links about it.
http://www.prevention.com/health/health-concerns/how-immunotherapy-cancer-treatment-works
http://www.cancerresearch.org/cancer-immunotherapy/about-clinical-trials
http://www.fightcancerwithimmunotherapy.com/
Sincerely,
Armen
I have looked into it, thanks.
Dear Lisa,
Thank you so much for the update. I think of you every day, and I believe I told you that you re the first person I look up on Twitter each day. I am so sorry for all the pain and massive discomfort and fatigue you are going through. I wish I could do something more for you than just saying you are truly the strongest person I think I’ve ever seen. Your strength, courage, grace, and calm inspire me daily and remind me to be grateful for the health I have, and I think “if Lisa can do this or that, I can do what I need to do with my health.” Truly you have changed my thinking, my attitude, my entire way of relating to life. The impact you have on people is truly magnificent. I am just sorry that I had to get to know you a bit because of metasticized breast cancer. You are, however, a gift to all of us. I wish you much better days ahead…I do hope your body gets some rest and you gain strength and feel even somewhat better.
Love,
Elizabeth
Hydrangeas – OMG – how I love them! I am sure they will give you much pleasure. Fascinating how they turn different colors depending on the minerals in the soil and that you can manipulate….
As always…you inspire. Don’t think I could do what you do. Just had a friend who passed after risky surgery 2 weeks ago and another who told me she was diagnosed with blood cancer. And I, have major surgery (elective for quality of life) planned for the end of the month. I try to keep things in perspective….but not always possible. Thanks for helping this medical phobic person keep somewhat brave….I do send positive thoughts and energy your way.
Sheila
Dear Lisa, I am praying that you will see God as your refuge and strength, an ever-present help in trouble. Ps. 46:1 I am praying that each treatment you undergo brings you a bit closer to getting into remission. You are remarkably strong and brave.
I do not believe in God and have never found any strength or comfort in religion but I am glad if it helps you.
Aaw, Lisa! 🙂 Hi. Julie here with br cx IV / bone mets. I am not a believer either, but the little talismans and reports of prayers that loved ones have brought me bring me great comfort. I hope you can enjoy these gestures of love as well. They do help.
Bone mets do not kill? My cooties were discovered when T12 collapsed. I still have residual pain in my damaged but healing hip sockets. So far, all abdominal organs are functioning. I hope you don’t mind my quibbling on that point. The lesions may not kill, yet the damage caused by bone weakening can be life threatening. And it makes me walk funny. 😀
I am currently on Xeloda as well. I didn’t know therapy could return you to a drug in this way. That’s interesting. My biggest struggle with xeloda is oxygen deprivation and chest pain when exerting myself in any way, such as walking up a slope. I hope these meds are kinder to you.
I need to call my PC tomorrow. After 8 months of Tamoxifen and then 9 months of xeloda, I think my thyroid is finally having some screaming meemies. Found your blog while net surfing at 3am.
Big hugs to you, girlie. The Native American Medicine Man doll on my nightstand dances for you too.
Julianne,
I am very sorry to have to tell you this but Lisa Bonchek Adams died this past March – on the 6th. I just wanted to let you know so you won’t wonder why you’re not receiving a reply from her. All my best to you,
Elizabeth
You’re amazing.
Thinking of you and your family daily.
Lisa dear,
I follow your progress daily; I am in awe of your strength, determination and responsibility in not only participating in your treatment, but reporting on every step for the benefit of all. At times I feel guilty for my good health and wish I could share something substantive with you. I care about you. xx
So glad to hear another blog post from you, I just wanted to say how brave I think you are x x
Hi Lisa,
I am forever grateful for your willingness to write with such clarity about your experience. I have said this before but you give voice to the experience of my very best friend. I wish more people who love her had understood exactly what she was dealing with at the time, myself included… Your words continue to be a great gift to me. I hope you find some great television to watch if you can, and some respite from the harder days.
Love,
Pam
So glad to see an update.
Oh, Lisa. So much to deal with.
I am always sending my best wishes.
It is good to know that you have great care and that you have wonderful assistance from your friends.
Thank you for the update. xo
Dear Lisa,
You are a remarkable woman. My thoughts are always with you.
Barbara
You are an inspiration.
You’re an inspiration to so many.
I do not personally know Lisa or her family . I follow her blog and tweets from Colorado. I am a nurse and am reminded of the need to remain patient focused. I do pray for her lovely children and hope that her days on earth are long and plenty. Thank you for sharing part of your life with strangers like me.
You deserve nothing but the best. You are so strong! It saddens me to see that people (such as above) have to make awful comments. Even allowing those to publish takes a special person. Thank you as ever for all you share.
And, on a very minor note, as long as I’m writing this, I read what you said about Udderly Smooth, then bought some (it’s made practically down the road from where I live) and it has saved my hands this winter! Thank you!
I have been following your blog for quite some without comment. But today, I feel inspired to write to you. Your resilience is awesome, in the truest sense of the word. When I read your blog, I am reminded of human capacity for strength. You are kind, you are warm, you are funny, and you are absolutely true to yourself and your beliefs. I have to admit, I always giggle a little when you write back to people who “pray” for you – basically saying, do what you need to do but not my thing. You are the epitome of MOXIE. Lucky for everyone who knows you. And lucky for me that I can read your blog. Too many people I know have been affected by cancer. I wish things were different for you right now – and I hope those flowers bloom for you very soon. I think of you and yours often – wishing you sunshine, sweet air, and all the hydrangea in the world.
I have been following your blog for quite some without comment. But today, I feel inspired to write to you. Your resilience is awesome, in the truest sense of the word. When I read your blog, I am reminded of human capacity for strength. You are kind, you are warm, you are funny, and you are absolutely true to yourself and your beliefs. I have to admit, I always giggle a little when you write back to people who “pray” for you – basically saying, do what you need to do but not my thing. You are the epitome of MOXIE. Lucky for everyone who knows you. And lucky for me that I can read your blog. Too many people I know have been affected by cancer. I wish things were different for you right now – and I hope those flowers bloom for you very soon. I think of you and yours often – wishing you sunshine, sweet air, and all the hydrangeas in the world.
You are an inspiration to me and I think about you a lot. I’ve learned so much about cancer through your blog and twitter updates and am in awe of your bravery.
Lisa has NEVER needed anyone to speak for her, or fight her battles. Indeed she is far more restrained, articulate and full of grace than I could ever be under the circumstances. But I feel compelled to voice my opinion. Paula and Susan – if you find Lisa’s matter-of-fact style and superior understanding of the minutiae of her different cancer treatmentments that she carefully explains to us ABRASIVE – then don’t read her blog and have the human decency to not to come on here and pile on her again. Tom said it best – the editors of the respective news organizations that employed those paragons of compassion, the Kellers, made swift decisions about the husband and wife’s tag-team approach to tearing down a woman who is blogging and Tweeting about her terminal cancer. They have disappeared and have not been heard from since on the matter. Lisa is still here, much beloved by more people than you two or the Kellers could ever fathom. You two disgust me. If you don’t like what Lisa is doing, you are full grown adults; why not spend your time making the world a better place doing something else rather than picking apart the manner in which one woman with a terminal disease chooses to express herself? I have lived with severe, chronic pain for 21 years and read several blogs that differ in tone, style and substance. Some I like better than others. Some I do not relate to at all: but I do not waste time writing to the authors and telling them “I don’t like your style of writing about your pain.” Just when I think I have seen the lowest form of human rubber necking – you two bottom feeders come along and remind me that no, people can sink even lower. I find YOU abrasive, compassionless, insensitive, cruel and wasting space on here. Go back into your tiny, pitch-black lives of bitterness and just plain meanness and leave Lisa, and the rest of us without your presence. No one wants you here.
Hi Lisa,
First time poster, long time reader. May I be honest? As a believer of Jesus I have always felt a tinge of sadness when you write about your non belief. But oh how I have learned from you and seen more Christ-like behavior from you than I’ve seen from a thousand christian women. Your kind words, always dignifying, turn away wrath. I want to let you know that you have done much to increase my faith in the goodness of people. Your restraint and carefully chosen words are a legacy that few of our children will have. Know that. Believe that. Because it is true.
Anyway, I spent all yesterday at Sloan (NYC), too. Like yours (right??), my husband is a physician which is terrific 90 % of the time though sometimes I envy people’s benign ignorance.
My sister has stage 4 colon cancer metastasized to liver and will be getting the HAI pump next week (as well a liver resection, etc. ). She is the same age as you are (well, I am too give or take one year). However, as brilliant as she is, she has not even one bit seem to reconcile the life and death nature of her illness. Meaning, she knows that colon cancer is generally treatable (earlier stages) and assumes stage four is also a no-brainer to eradicate. A protective mechanism, I am assuming.
I’ll be in NY with her all next week as they are reversing her illioscopy, resecting left liver with the goal being to remove right lobe in two months….. My sister was doing ok until the hepatic surgeon mentioned offhandedly that if they see her abdomen littered with microscopic cancer, the whole treatment plan will change. Then she nearly fainted.
I apologize if it was presumptuous of me to post my story as this blog is about you, and for you. As a former cancer patient, I think it is a toss up over which is harder – caregiver or patient…. The caveat being stage four cancer in which case that is the MOST challenging.
Yours in suburban NJ (which is quite like suburban Connecticut!)
Just to correct a piece of info, my husband is not in the medical profession in any capacity.
I wish your sister the best. These are such challenges both as patient and caregiver. Xo
Lisa, it is so good to hear from you. Like you, I am looking forward to spring. I wish you restful healing in the coming days.
Keep spring in your mind and in your heart. *hugs*
Thank you for your incredibly honest insight and sharing your journey. You & your family are amazing.
Abrasive? To those who don’t know the “minutiae” of your disease? Do they mean minutiae like whether it’s curable or not or whether eating citrus peels will fix you right up?
Until the Kellers, who are intelligent people capable of reflection and regret, have the decency to apologize, they get no quarter from me. I honestly keep waiting for it. In their place I would be longing to confess error and atone.
As ever, your cool and thoughtful take teaches and inspires.
AMEN
Thank you SO much for your update. I look forward to reading your blogs. I can’t wait for spring either although these days of snow have been beautiful. The air smelled differently, all was so beautiful. The cold is what I don’t like. Wishing you comfort.
Thanks for this post
Wishing you much easier days ahead. I can’t even imagine all of these complications that then lead to more complications. It will be wonderful for you to smell Spring in the air! 🙂
Dear Lisa,
You have weaved your way into my heart and mind. Oh how I wish you a speedy rebound. You amaze me with your steadfast determination and ability to do what you need to do when you need to do it. Your children are watching a heroine and you will leave a legacy that few children truly have: A model of strength and integrity in the face of adversity. If a wish could make it from my home to yours, I would wish you peace today.
And while I fully believe in modern medicine and its ability to change the course of a life, it is still part Art so I am believing you are an outlier and will recover strength that will astound you. So many people seem to love you and care. You are a kept woman.
Sincerely,
Cassandra
I wish beautiful flowers for you to gaze upon every single day.
hi Lisa – I am so happy when I get to read a new post – thank you for taking the time. If you have a moment to comment on any previous experience you may have had with Xeloda, could you? My mom was on it VERY successfully – but when it stopped working – they tried Affinitor/Exemestane(Aromasin) combo – the Affinitor was way too toxic for her to handle – but she has been off Xeloda for about 7-8 months and I’m wondering if a break from it might help it regain effectiveness. Thank you for your time and your blog. Leslie
Lisa, I think of you often. We actually share the same Onco at Sloan, Dr. Dang. She is great and we are both lucky to have her.
I hope your days get better and you experience no side effects from these treatments. You deserve to get a break and relax.
Please know you’re in my prayers.
Rebecca
My admiration for you grows everytime I read a post. As many others do I wish that I had some way of comforting you and your family but at least know that there is a friend in Maine who cares.
May God be with you and keep you close…
i stumbled upon nthis blog today and i must admit it is very inspiring. may you have the courage to get through all your pain and troubles, take heart and know that many are with you spiritually through your journey.
i stumbled upon this blog today and i must admit it is very inspiring. may you have the courage to get through all your pain and troubles, take heart and know that many are with you spiritually through your journey.
Really, the word “Cancer” is very painful. We can save ourselves by increasing awareness among people all over the world. When any oncologist have prescribed generic medicine for the treatment of cancer then among few percent people that are suffering from cancer cannot take this generic medicine for a certain period time period due to lacking of money. So Cancercurepharmacy.com is offering Generic Anti-Cancer Medicine at Maximum discount rate.
Yes cancer is a painful word hope no one else ever gets it
Yes I must agree
Dear Lisa,
You will surely be ok in the near future. My doctor thinks it has more to do with Carpel Tunnel Syndrome – which I never had before. I am going to be 70 years old soon, am in excellent health and shape as I work with a personal trainer. I am very happy to buy the drugs from Bonhoa Pharmacy. Life is Good!
Sorry for your loss
in the event that you are discussing the Huff Po writer yesterday who gave scientifically off base information about what sort of malignant growth I have and what metastatic bosom disease is, that isn’t nitpick.
I have known Lisa through my whole malignancy process and I have become only help and benevolence. If it’s not too much trouble attempt that you would be stunned at how much better you feel.
Lisa, as dependably love and light to my dear companion Jack (medixocentre.com)