Today is October 1st. It is officially Breast Cancer Awareness Month. To me every month is Breast Cancer Awareness Month. I will have breast cancer for every minute of the rest of my life. I need no reminder of what this disease is, what it does, what it can do.
To me, it isn’t about pink products, or a five mile walk, or a bake sale. It’s about life and death. My life and death. It is about having cancer detected early and doing everything possible and still being diagnosed more than five years later with stage IV disease.
October 1, 2012 was the day I found out I had metastatic breast cancer. That was the day my life changed.
The average life expectancy after diagnosis is given as 26 months. Today marks 24 months from my date of diagnosis.
I have a lot to say about October, about research, about education, about how those of us with incurable breast cancer are mostly forgotten. I want to do my part to make the voices of people with metastatic breast cancer heard. I will be posting the link a lot this month to the fund I’ve established at Memorial Sloan-Kettering for research into metastatic breast cancer. This month I will also repost some of my own favorite blogposts and also my most-read pieces. I hope you will find posts you have never seen before and find something new in a post you might have read when I first published it.
Some will be practical advice pieces. Some will be purely poetic. Some will be about me, some will be about our children.
I find that when I re-read a piece I find something different in it because I, the reader, am different. I encourage you to tell me posts that have resonated with you throughout the years that you would like to see again or want others to see.
I’m starting the re-posts today with a piece I wrote only about 6 weeks after my diagnosis of metastatic breast cancer.
……………………………………….
“And Yet the Morning Comes”
Each day is different. Each moment, too.
It still seems surreal, this diagnosis of metastatic breast cancer.
It’s strange how quickly the horrific can become regular: the chemo, the side effects, the new routines.
Oncology appointments, IV infusions, medication refills all start to fill my calendar.
I start making lists of things I need to do. I prioritize them.
It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.
The small moments are the ones that bring tears to my eyes. Tristan’s little voice saying, “I love you, Mama. You’re the best Mama in the whole wide world” is enough to make me misty.
I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.
I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.
I try to be the one to do things with my children as much as I can. Even if there is a babysitter in the house Tristan always reads to me at night for his homework: that is sacred. I still save artwork and photographs and remind them to brush their teeth and clean their rooms.
I try to do the little things: helping Colin with a school project, keeping Paige company while she does homework, watching a sports practice if I can. I go to the grocery store and I work on the holiday card. I still take pleasure in getting the stubborn stain out of Clarke’s dress shirt that the dry cleaner couldn’t.
My motto is that I will do as much as I can for as long as I can.
I don’t ever have a moment that I forget about my cancer. I think that’s the part about it being new. Even when I was diagnosed the first time — even after I finished chemo and surgery and all of it– it still took at least a year for me to be able to push the daily fear down. Of course now the fear has been realized. I am living it. I am living my nightmare, one many people share.
And yet, the morning comes.
I see the light of day and I get out of bed. I see the faces of my children. I kiss my husband goodbye when he leaves for work. Each day I have is a day that matters. Each day is one to make a memory with my family and friends.
Each day is one more than I had the day before.
But let’s be clear: there is no joy in this disease.
My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.
I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.
I still haven’t fully come to terms with what this diagnosis means, but that’s because there’s no real way to know. We don’t know enough yet. It is the uncertainty that is the most difficult part for me. Will this chemo be the one that lasts for a while? Will it fail? When? What next? How long will that one last? My body holds the answers, but it’s not showing its hand yet.
I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.
I walk past people on the street and know they have no idea what is going on inside my body.
People in front of me in line at the gas station don’t know there’s chemo in my purse.
I look like everyone else. I have hair on my head. I ask the checkout person to pack the bags light because I can’t carry anything with my left arm now (the cancer has fractured two ribs on my left side).
Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible.
I’m still processing. Reeling. But while I’m doing that I’m living.
Link to Twitter
I remember when you first posted this, and you’re right. It does read differently now. There was shock two years ago that your cancer could be back when you had done everything you were supposed to do, everything so right. Many of us don’t actually know you outside of posts and blogs; yet we were numbed and confused. Those feelings must have been a zillion times magnified for you and your family.
And here you are now, two years later. This is huge, Lisa. Knowing all of those treatments and side effects… how hard some days were for you to walk a few steps or write a few words…
When Tristan says something that brightens our day or Colin is on the mound and you are there with him, we are there with all of you. Those moments are bigger now than they ever were before, even for people like me who have been through it… been through this beast called cancer that changes everything we ever knew before. You give a voice to something that so many people feel but cannot say.
Even now I’m having a really hard time trying to put my thoughts into words; but mostly I just want to celebrate you (although I guess it’s a strange kind of milestone)… knowing how hard these two years have been and how happy I am (like so many others) to be here with you and have the privilege of reading your posts and experiencing the love that you give so freely. Thank you.
Dear Lisa,
I celebrate in a small way every time I read another tweet or post that you share with readers. You are writing so much in such a beautiful way, and that helps many of us (as we work through our own adventures) more than you might imagine.
Thank you again. I am always hoping that you make many more memories, and I cherish each day that I am allowed to begin a lovely morning with your words.
Merva
Lisa, EXACTLY what I am experiencing. I am so glad you reposted this. I look forward to more… When my son asked me the other day, if I was going to die, I felt more prepared to answer after reading one of your earlier posts. Thank you, thank you!! Sending you hugs!
Lisa, I would like you to know I read your posts all the time. I’ve had metastatic breast cancer for almost 3 years now and this diagnosis came 9 years after my original breast cancer treatment. The main thing I want to say is that you help me so much because of how realistic you are. I feel like you put a lot of my thoughts and feelings into words and it is very comforting.
Lisa, I am so grateful for your very frank and sincere tone. I deeply admire your unwavering “youness.” I don’t think that’s a word, but it’ll have to do.
Wishing you moments of peace, however they may come.
Today, these words resonate with me more than ever. Words so simple, but speak for me, speak for the situation we find ourselves in, again and again. We hop from one treatment to the next. One crisis to the next. One side effect to the next. And we still never know everything. Every time we think we know enough, a new surprise comes to light. A new lesion, a new side effect, a new bump in the road.
I try to accept that we can’t control what happens. I try to practice my Zen, my mindfulness, my gratitute. Yet the uncertainty can be so threatening some days.
Look forward to more re-posts. As I said on twitter, I am always re-reading and honing in on something new.
I remember Patrick Swayze talking about having a ‘zero bullshit’ tolerance level when he got told he had six months to live. He didn’t expand but I get the impression he was referring to some extent about the banal platitudes that spew forth in these situations. Cancer being a ‘gift’ is one of those lazy perspective platitudes that still persists, and probably always will.
Funny how what we learn, when all is said and done, runs so contrary to how we’re ‘told’ to act or feel in day to day life towards different situations and scenarios. There’s just so much bullshit flying about, yet people live in fear of pointing it out or even acknowledging it because of how it reflects of them and their view on life. It”s sad that you have to have a terminal disease or be in a precarious predicament to be able to point out the stupidity of these things without judgement. It’s almost like it’s okay to tell as it is, because ‘you’re dying’.
Anyway, great blog, and I hope you still have many more years of enlightening us with your observations on the banalities that we take part in (unknowingly most of the time) when we’re healthy; but plague us when we’re ill.
An incredible lady you are..on board with you”cancer is a gift”…..it’s an insidious disease that destroys lives..x x ashley
Thank you, Lisa, for today’s post. And so sorry today is such a sucky “anniversary” for you.
I woke this morning to all pink all the time network shows, suggesting to me that having breast cancer was a joyful celebration. It made me almost wish I could trade my recurrent advanced lung cancer diagnosis for a breast cancer one.
This glorification really pisses me off – and minimizes the reality of what having a life altering/limiting/threatening illness is really about.
Yes, of course it’s great there are so many breast cancer survivors – but that only tells part of the story. By the way, here’s an interesting statistic: twice as many women die of lung cancer than breast cancer. November is Lung Cancef Awareness Month. Our color is transparent.
Thank you for always so thoughtfully and clearly articulating how I feel. I share your blogs with others. I particularly appreciated your blog about what to say and not to say to someone with cancer.
Best hopes to all of us.
Stacy
I just stumbled across your blog while looking for “stupid things people say to cancer patients”, because as of today, I have heard enough! Thank you so much for your words that resonate with so many of us with cancer. You represent us so well.
Tracy
October 20 2005 was my original cancer diagnosis and October 20, 2007 is my wedding anniversary. My metastatic date was June 2009. I’m well beyond the 26 months, and have never been given a timeline by my oncologist. I enjoyed reading your “And yet the morning comes”. Good luck with your treatment
#JustSayinItLikeItIs
Keep going. Love ya, Lisa.
Metastatic date and original diagnosis date 12/2005. Almost 9 years now of living with this
constant uncertainty, and chemo after chemo, which has beat back the mets in one organ, only to have it return in another. And still I persevere in a kind of half life. Your words have helped me handle those who say I don’t have a “positive attitude” and those who want me to take miraculous herbal cures. What chemo has given me in time, it has taken in vitality, at 59 years old I look and feel 80. The small time periods of feeling “normal” during chemo breaks are what keep me going. This is an awful disease.
To the women who have gone the “average 26 month mark” – thank you for posting your comments to Lisa.
And to S. Kaufman- thoughts to you too.
And Lisa, I think of you often. I thought of you yesterday morning when I had my mammo at 7:15am in the morning. Yes the machine pinches but better to have that pinch than to skip it and not find out until later. We are fortunate now to have the advancements that those with the disease 30 years ago didn’t have, but there is still more to be done.
I always enjoy your posts. I look forward to many more. It’s amazing how you can put into words almost exactly what I feel. I’m not too happy with all of the pink that I’m going to see this month. Hopefully, sometime during the month those of use with MBC will be acknowledged.
Lisa,
I discovered your Twitter account and blog after you wrote this most moving piece. I believe I’ve been reading your tweets, blogs, etc for about a year. Now that you are two years into life with metastatic breast cancer, I want you to be assured that I will never, ever forget YOU, or the thousands of women in the world with INCURABLE breast cancer. You WILL BE HEARD if I have anything to say. I can’t stand the pinkness of October. I know people mean well, but pink coffee mugs, T-shirts, pink cupcakes…ugh! You have shown me a world living with terminal breast cancer that doesn’t have room or time for pink. You can go pink, do everything right, and still end up with metastatic cancer down the line. Thank you for re-posting blogs I missed. Your courage, your determination to do as much as you can, for as long as you can, inspires me, someone with severe chronic pain – to get out of bed and keep going. You are, and will always be, one of my most cherished heroes. Your extraordinary nature comes from the simple, beautiful, ordinary way you continue to live your life. I wish you more time, more good times than bad, more stories to read with Tristan, more sports events to watch, more time simply looking at and loving your three beautiful children. I know that you have suffered terribly, and will suffer – the cure causing dreadful pains to keep the disease at bay. You don’t sugarcoat it so neither will I. I just wish you more, better, the best that can possibly be had.
Love,
Elizabeth
Lisa,
I discovered your Twitter account and blog after you wrote this most moving piece. I believe I’ve been reading your tweets, blogs, etc for about a year. Now that you are two years into life with metastatic breast cancer, I want you to be assured that I will never, ever forget YOU, or the thousands of women in the world with INCURABLE breast cancer. You WILL BE HEARD if I have anything to say. I can’t stand the pinkness of October. I know people mean well, but pink coffee mugs, T-shirts, pink cupcakes…ugh! Cancer is not pink and cheery. It is no gift. It is no lesson to be learned. It is simply a rotten, devastating, hideous thief of time, lives, happiness, health. You have shown me a world living with terminal breast cancer that doesn’t have room or time for pink or placating words, false praise, dumb comments, insensitive words. You can go pink, do everything right, and still end up with metastatic cancer down the line. Thank you for re-posting blogs I missed. Your courage, your determination to do as much as you can, for as long as you can, inspires me, someone with severe chronic pain – to get out of bed and keep going. You are, and will always be, one of my most cherished heroes. Your extraordinary nature comes from the simple, beautiful, ordinary way you continue to live your life. I wish you more time, more good times than bad, more stories to read with Tristan, more sports events to watch, more time simply looking at and loving your three beautiful children. I know that you have suffered terribly, and will suffer – the cure causing dreadful pains to keep the disease at bay. You don’t sugarcoat it so neither will I. I just wish you more, better, the best that can possibly be had.
Love,
Elizabeth
Sent from my iPad
Today while watching GMA, all the ladies dressed in pink. All having been diagnosed with breast cancer at some point, I winced. You should have been sitting right there with them. They only told half the story. As journalists they have a duty and an obligation to tell the rest of it, the whole story. They didn’t meet their obligation. There is no doubt that one or two or more of them will be diagnosed the MBC down the road. They are not cured. There is no cure. For them to say they are disease free is a statement made either in denial or ignorance. They are misleading women everywhere into thinking that just because their scans are clean, or five years has passed, that they have beat the disease. Yes, it’s true more than half will live if it’s caught early, but they need to show and tell your story. When 3 out of 10 women develop MBC AFTER the five year mark, they are being led down the road to a bad surprise, a sick discovery, years later. Your one story is more important than 100 other stories of a cure. Everyone knows some women are cured if it’s caught early, but not everyone knows what else can happen, your story. Thank you for sharing your story with all of us, with the world. No one needs to find out the hard way something that they have a 30% chance of happening to them.
Your words hit home, “I’m still processing. Reeling. But while I’m doing that I’m living.” We share a date. 10/1/2012 was the morning I breezed in for a follow up CT scan after tough surgeries/chemo/radiation/surgeries for colorectal cancer in 2010/11… you know, the drive through appointment before continuing on with the day.. with life… to be told cancer had come back with a vengeance. I respect your candor, perspective, and attitude. Thank you for sharing your journey.
In my mind, all that matters is that a cure is found for those with metastatic cancer. When I think of all the donated money that is squandered, it’s unconscionable. Thank you, Lisa, for posting even when you’re not well. Your words are so beautiful and I know you’ve helped many.
Lisa you have an amazing way of putting my thoughts onto paper…. thank you… I have been going crazy thinking that I was the only one who thought this way….thank you for letting me know that I am not alone…..
Just discovered this blog, and it’s wonderful. Thank you Lisa for your thoughtful writing, and also thank you for the fund you started at Sloan-Kettering.
One thing I’m wondering, if anyone here knows, is whether Sloan-Kettering makes a commitment to only use that fund only for research into metastatic cancer, or if the fund can be used at their discretion? Either way is great; I’m just curious about whether/where there is funding reserved for metastatic research.
Thanks again Lisa for your thoughtful blog.
Hi, if you go to the actual donation page it does talk about this (only saying that so you know that people can see the answer when they visit that page). I have earmarked that money for research on metastatic breast cancer ONLY. In general if you donated to “breast cancer research” at MSK (or anywhere, I am sure), they could use it at their discretion. I spoke with the wonderful people in the giving department and they set it up; I made it a condition of my fundraising efforts that it goes only for that purpose if donated through my personal giving page. Thanks for asking. This is the question that should be asked everywhere, and people can talk to any institution’s giving department before they donate to find out if they can specify metastatic research.
Awesome, thank you.