The past few weeks have been some of the most challenging this year. By the time you read this I will have had my third Navelbine infusion. Unfortunately, we do not have any evidence so far that it is working. Each chemotherapy that I try at this point only has about a 30% chance of working even for a short period of time.
For now, we anxiously wait. But that waiting means that the cancer is progressing. Increased fatigue, pain, nausea, weight loss, shortness of breath and weakness are my companions right now. I do have my team helping me manage these side effects, but there is trial and error involved. Also, at this point an increased cancer load is part of the problem. The only thing that will truly help that is to find a systemic therapy that works, and let it do its thing. For that reason I haven’t been able to post as often as I wanted this week.
I do want to share that the book auction to raise money for my metastatic research fund at Memorial Sloan-Kettering is now live, and it runs through October 24th. This is an exciting event. You can bid by posting a comment including the amount of your bid below the photo of the box you want (you must live in the USA to participate). All proceeds fund research and do NOT go to my personal medical care. Boxes of signed books have been donated by authors and then collected and curated by Erika Robuck. You can click here to go to the Facebook page and then scroll down to see all of the boxes.
Last year the event raised over $4000 and we are on track to blow that out of the water. If you want to donate directly to the research fund but don’t want to participate in the auction, don’t have Facebook, or don’t want to deal with Facebook, please feel free to go here. Donations of any amount are so appreciated.
For today’s October re-post I’ve chosen one of my first pieces, one that readers ask for again and again. I have decided to revise it here, now that my diagnosis has changed. I’m keeping the original post online, though, and you can see that here.
………………………………………….
I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.
I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.
I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.
But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.
My first diagnosis with breast cancer took its toll on me and I was quite sure I would never, ever be the same.
I had no way to know then that “never, ever the same” would mean something worse, something fateful, a juggernaut.
I told myself “they’re only breasts.”
I said, “I don’t need ovaries, I’m done having children.”
But that obscured the truth.
The truth is that it did matter,
They do matter.
They said my uterus was atrophied.
It almost sounded funny when they said it.
“Who cares? What does that matter?”
It did. It does. It will.
At the time, to get rid of all hormones was thought to give me a better chance at avoiding a recurrence, but there was a price to be paid.
No estrogen mattered more than I ever thought it could.
It felt worse than taking injections to suppress my ovaries, worse than taking Tamoxifen.
Those were easy.
I had no clue what was ahead.
I wore the skirt, I put the makeup on, I walked the walk.
But I did not feel like a woman anymore.
I most certainly do not feel like much of one now.
Make no mistake, I am proud of what this body has done for me.
My three children top the list.
But now I must focus on some of its cells,
now malignant,
throughout this body,
growing at a horrific pace.
My body has now become a personal science experiment.
Sometimes, when things are going well, you could look at me and have no earthly clue.
You see,
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.
While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.
These things are not tied with a pink ribbon.
These things last longer than a month.
This is part of awareness.
This is just a part of what breast cancer can do.
This is just a part of what breast cancer has done to me.
This is part of what can happen
Even with early detection and treatment.
This is what can happen even years later.
This is why people should not prematurely claim victory.
This is why you are not necessarily safe.
This is what breast cancer could do to you.
This is how what some think they have “beaten” or “bid goodbye to” can still
kill.
This is what it will do to me.
Link to Twitter
I love you Lisa. You are an inspiration to me every day.
You are a beautiful soul, Lisa. With so much to give, even now. I am deeply sorry that cancer has taken so much from you. From so many of us. Much love. Kerry
I will keep you and your family in my prayers. You are an inspiration. God Bless
As always, your voice is clear and strong and wise. I love hearing it.
Holding you in my heart Lisa.
You continue to be an inspiration to all of us. Your blogs seem to express what we feel but cannot put into words. Thanks.
Sending love your way. I wish I had something more magical.
Although I am in an entirely different set of circumstances with an entirely different type of incurable cancer, your word reflect my feelings exactly. Your writing adds quality to my life; I want you to go on writing for a very long time!
So sorry that things have been so difficult for you. Thank you for continuing to post. Hoping things turn around quickly.
You are an inspiration of strength. As I go through my own battle with BC, you give me insight and a sense that I am not alone. I look forward to your posts. I hope they give you as much as they give to us.
Lisa have followed your blog for about a year , I do not have cancer, but like so many have lost loved ones to this hideous disease. What a moving post this was , and clearly shows the devastation of breast cancer . You have certainly “raised my awareness” breast cancer is not all pink and fluffy , it’s such a shame that October represents breast cancer in this way and negates those that have stage 4, be assured that your story has raised awareness x
It is always a gift to hear from you. thank you.
Thank you for continuing to share your truth and journey.
Dear Lisa,
Your posts are always a message of strength and courage. You are an extraordinary woman.
Barbara
I think of you throughout each and every day and I am inspired by you. Thank you for sharing.
I’ve never replied before but wanted you to know I think you are a wonderful writer. Your words bring tears to my eyes,but also educate me. I too am a mom of 3 kids (same ages as yours). I think of you often and send good thoughts your way. I have also prayed for you(it can’t hurt right?). Please know your writing and your blog are important and make a difference. Hugs to you!!
this is a powerful account. Thank you from all of us who genetically have this in our future. Helps me appreciate my today. Be well.
Lisa,
Thank you from the bottom of my heart for re-posting that piece; amended now, sadly, with your final diagnosis. Sometimes I think you must be their bravest, strongest woman I’ve ever seen. But I know you’re human and it hurts every cell in my body to read that the CANCER may be progressing; that you are searching for a treatment that will work longer, better, beat the cancer load down. I don’t have words. I can only gain insight and wisdom from your experience in the event this happens to me or a loved one. You are an INCREDIBLE WOMAN, 100% WOMAN, you are the best mother I have ever seen dealing with cancer and trying to keep some level of normalcy for your three precious children. I get ANGRY sometimes. I want to rant and rave and rail at the Universe. Shake my fist at the sky, turn away from the stars. Alas I know the moon and the stars, the tides and the sun above are indifferent to our little human lives. Never fear though Lisa, you will never be forgotten by me, and no doubt thousands of others. You will always be in my heart. Right now, I hope for the best palliative care for your side effects, and I hope for medicine that kicks cancer’s ugly cells back down. You are two years younger than I am but I feel as if you are so wise, so maternal, so brave, so forthright – I feel as if you are my big sister, my second mother even. My courageous friend. I wish you the best. I think about you a lot throughout my days. You have become part of me in a strange way. I wish there was something, anything I could doo for you to make things better. I wish. ❤️
Lisa, you are so loved. I could not get through these days without your friendship and support. I’m holding you in my heart and never letting you go.
I was telling some friends about you yesterday: a stranger I feel like I know because of how much and how bravely she shares, someone who has literally changed the way I think about life. I know I’m among many people who feel this way about you, Lisa. All my wishes for an effective treatment soon to give you more energy, health and time
My uncle just got the news October 20. So I am reading up. Your site tells one of the most beautiful stories I have ever heard. Thank you, thank you. You must feel very loved. I see the photos of your husband and kids. They are very lucky to have you in their lives. So am I. Thank you so much, you have inspired me greatly……John Platt, Framingham, Massachusetts.
Great poem.
Sometimes you look at young people – with ‘spunk’, fearlessness etc – and one becomes somewhat conflicted. It’s obviously impressive, and their drive and zest is admirable an(along with their achievements which come with that), but at the same time you can’t help but think to yourself “they haven’t got a clue”; at least in terms of the unforgiving realities of life and how little control they have over the ailments that can diminish that drive and ambition; usually fatigue/energy related. There’s also a certain arrogance there. How often do you hear these people say “I thought I was invincible” or convey a belief that people are to blame for their illnesses in some way, before they got ill? Quite often, so as I say, I am somewhat conflicted and often irritated by the ignorance that comes with only knowing good health.
It kind of ties in with the belief that positivity and a strong mind can triumph over disease. It’s easy to express these beliefs when sound of mind and body but when one actually experiences tangible symptoms people change their tune very quickly. And yet all this and the above can be pre-empted if people were just little less self-absorbed and more empathetic. Genuine empathy leads to self-knowledge, so one can gain wisdom looking at the misfortune of others while also being physically healthy, rather than being in a situation where you gain all this perspective only to die, which always seems such a waste and unfair, yet it’s a cycle we see repeated year on year out, unfortunately.
I’ve always wondered a how a person would act and live if just before death they pulled from the brink and restored to full health. After experiencing all that, the process leading to death, would they just be in a state of philosophical shock for the rest of their life? Would the knowledge of what it’s like to almost experience death make it impossible to return to a normal existence in and just pick up from where you left off? By the way I’m talking about long-term illness type situations, not heart attack or trauma incidents, which I think are different.
Lisa – I am constantly in awe of the grace and generosity you show while suffering the two most awful side-effects of your disease; nausea and heartbreak. You are in my thoughts and I send sincere love your way today and everyday. (P.S. I was thinking these thoughts and was going to keep them to myself, but became inspired to share them by your nudge to do so).
You are so bold, so brave. And, my heart is breaking for you as you work your way through your disease. I just wanted to let you know that I invoked my What Would Lisa Do (WWLD) mantra at least a dozen times yesterday. The changing of the season causes my MS symptoms to flare and extreme fatigue has sets in. My cognitive abilities also take a hit and simple conversations leave me exhausted. I argued with my daughter (she is 24 and recently returned after living in Spain for 18 months ) over something insignificant. But, because I had this “brain fog”, I couldn’t articulated my feelings and it turned into an emotional melee. At some point, I thought of you. Maybe one of your tweets came across my phone. I thought of what you would give to be able to see your daughter reach 24. I stopped in my tracks. I went to my daughter’s room. She said “it would be nice if you knocked.” WWLD….WWLD…WWLD I told her “I love you Rose. Let’s just stop. Just let it go” I went to hug her. She let me (barely). WWLD…WWLD…WWLD. It was late and we ended it there. But, today we talked. I was able to listen more closely because I had been quiet all day and was rested. I also told her about you. She was moved. I told her about WWLD. She said “Maybe we need T-Shirts, hats and bracelets with What Would Lisa Do on them”. Not a bad idea if only to remind us of how precious life is. No one knows that more than you. Thanks, again. You have made a difference.
Hi Lisa,
When I think of you in the month of Oct I think of the glorious Oct days in NYC with our beautiful Oct baby girls. I’m glad we met 16 years ago. I read your posts and follow you closely each day though I’m not an official “follower.” I am in awe of your strength, though not surprised by it. I think of you and your family often. Though we live far away now in Texas you are not far away in my thoughts. Love to you and your family,
Alicia
Hi Lisa,
I am new enough to your blog that I hadn’t read your most recent post before. I’m sad to hear you say that you don’t feel like a woman, because of all that’s been done to/taken from your body.
Reading your story, I am awed. You are the most amazing woman that I’ve ever heard of. You bear this incredible, heartbreaking burden, yet you still put your family first, love your kids first, despite how badly you feel inside. You take the time to share your story with the world, even when you feel horrible. Those things take a lot of strength.
You’re a good woman – a strong woman. I admire you.
Ruthie
You have helped me cope with cancer with your insights, honesty, beautiful writing, and practical information . I’m donating $$ today to Sloan-Kettering to help fund research into metastatic breast cancer. Thank you Lisa.
[…] things are not tied w/a pink ribbon (this is what breast cancer has done to me). By Lisa […]
[…] things are not tied w/a pink ribbon (this is what breast cancer has done to me). By Lisa […]
Hello, Lisa. This message was certainly hard and touching to read. Another young woman I became acquainted with (vi the Internet) some time ago also wrote her thoughts about the “pink” month for the Globe & Mail recently. She’s in a different place than you are right now with regard to cancer, but she has had her experience. She lives and writes with a refreshing honesty and I think you’ll like her and appreciate her courage and honesty, as we all do yours. Her name is Bif Naked – you’ll find lots about her via Google.
I have no words…only respect. Wishing you peace and a relief from your pain.
Hi, Lisa. I have been reading your blog and Facebook posts for hours. I do not have breast cancer(that I know of). I was diagnosed with cancer of unknown primary in April of this year. This means that all that could be found was metasticies, and they have no idea what or where my primary cancer is/was. My oncologist said it was Stage IV. It is concentrated right now in the lymph nodes on the left side of my neck and axillary. My scans show nothing else in my body. My oncologist has also referred to my cancer as “Whack-a-Mole”. I have had 2 surgeries on my neck to remove numerous lymph nodes. I have since developed severe lymphedema in my left arm and breast. I finished my first regimen of chemo, Carbo/Taxol, and my cancer has shrunk, but it’s still there. I am only telling you this so you know a bit about my situation.
I am 58 years young with 4 grown children, a loving hubby of 38 years, and I am looking forward to my 14 grandchild in March. I am indeed blessed. Your family is beautiful, and I pray God’s blessings on all of you for courage and miracles.
I could relate to you immediately when I started reading your posts. I know you have been on “the cancer road” much longer than I have, but I want to thank you for your updates and poetry. I am only beginning, and I hope we can travel this scary road together. I also believe in keeping it real. Thanks so much for your insight and honest sharing of your life. This is long enough for now. You’ll be hearing from me often.
Debbie
Lisa,
Have followed you for years, and found the recent re-posts incredibly moving. Your ability to communicate and express ideas and suggest feelings is exceptional. I hope the circle of support you have from your blog community continues to inspire your writing.
Marg
You are one tough old bird. I accidentally bumped in your blog tonight. Best wishes and much love…
Thank you so much for sharing this. My mom died a pretty horrible death from metastatic breast cancer and I am so tired of people trying to make breast cancer out to be some pretty, pink, happy disease. You know what set me over the edge today? Pink effing Christmas trees. If I decorated my Christmas tree pink, my mother would come back from the dead and bitch-slap me into next week. When are people going to stop pinkwashing it and concentrate on damned CURE?
Love your comment. I agree entirely.
You are an incredible woman. You touch everyone’s heart including mine. Your story is amazing. Thank you for sharing it with us, continue to write more about your experiences. May God heal you.
[…] You showed us the Stage IV monster under the bed and how to live with it. Never shying away, never tying it up with a pink ribbon, never excusing the ravaging rogue cells who take away too much, too soon, unfairly and cruelly. […]