It has been ten weeks since I was diagnosed with stage IV breast cancer. After I was diagnosed the first time with cancer in 2006 I began to mark time in a new way.
The parent of a newborn starts with days, then weeks, then months and fractions thereof. “How old is the baby?” a parent is asked. “He’s 5 days old” or “11 and a half weeks old” or “16 months,” the reply will come. But when that child is a teenager no one will mark his age in days and half weeks and months. The importance of those fractions will fade. Once he’s got years under his belt their significance is muted.
Time now gets marked in rounds of chemo, time elapsed since diagnosis, months without disease progression. There’s always a mental countdown, a cognitive calculation going on.
I find myself obsessed with time in a new way, but also rapidly losing track of it. Granted, some may be chemobrain. I wonder now that I am on chemo for the rest of my life what it will mean to my brain. It’s a necessary evil, but concerning. The chemo that kills cancer cells is also killing brain cells. New evidence shows the reality of this condition, no longer a punchline or mere excuse for forgetfulness.
I always encourage people with cancer (and any illness) to keep a calendar of their treatment. There is so much to keep track of that having an easy reference point is good. When did you change doses of medications? when did you see certain side effect symptoms? Jotting them down in a calendar or noting them in a smartphone calendar can be helpful. Sometimes on paper, patterns will emerge.
Grief is such a wily companion. Like smoke it creeps into places when offered only the tiniest access point. Grieving the life we thought we’d have is important. It’s easy to say, “lives don’t always go the way we plan” but that undermines the emotional complexities of dealing with serious illness. Just because things don’t go as planned for many of us (most of us?!) doesn’t mean there isn’t a serious adjustment to make.
“Roll with the punches” and “live in the moment” are deceptively simple phrases of advice that are not only absurdly emotion-free but also easier said than done. More than once in the past few weeks I’ve challenged people whose best words of support have been to live in the moment. While I understand the ideology, and agree with the premise that we must enjoy the time we have, I defy anyone without a stage IV diagnosis to tell me that it’s the quality of your years, not the quantity of them. These are things that healthy people say. Yes, quality matters. None of us want to suffer. I don’t. But years count, too. “Living in the moment” can imply that the grief process should be squelched or has an expiration date. Anyone who has experienced grief knows there is no expiration date.
Of course none of us knows our future. Some people try to tell me they don’t know their future either; they could get hit by a bus tomorrow. I love the response that Jen Smith suggested, “Would you like to trade odds?”
Acceptance of reality must come. Dwelling on the dark side of diagnosis won’t lead anywhere productive if dwelling is the only thing one does. I think that is the real meaning behind the idea of focusing on today. The acceptance of reality does come. Of course, that’s complicated when what the reality of what one’s prognosis is unknown. I have quickly built up tolerance for discussing the most serious and unpleasant ramifications of my condition. I occasionally sleep through the night. But I don’t know how long it will take to wave goodbye to my children in the morning, or tuck them all in at night, or talk about the future without feeling pain with the joy.
I mark the time. I’m back to being someone who counts the months and weeks and days. Counting them, appreciating them, grieving them. All at once.
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Ugh, WORD, SISTER. You nailed this one. I pray for bigger, brighter, longer days ahead. And I’m totally using that “trade the odds” line on my family, who constantly say dumb stuff like that š
Thank you again, for articulating such difficult thoughts and emotions in such a remarkably clear and beautiful way.
As ever, I’m pulling for you from my side of the Big Pond.
xxx
Lisa , Beautifully written and honest post. Thank you….. Beth
Lisa, what you have written gives me understanding, expands my perspective, shifts my thinking — what an amazing gift. Beautiful. Provocative. and Heartfelt.
Thank you.
So well and deeply felt and told! Thank you!
Meg
Oh. And before I forget, I celebrate heroes on Saturdays on my blog, last Saturday, you were one of the people I celebrated.
Louise, thank you so much! I don’t think I’m a hero at all… just doing my job, as I like to say. But I appreciate your compliment and sharing my work with more people immensely.
You are a fabulous writer. Well articulated! Love the comment about “would you like to trade the odds?” Perfect. Most people just don’t get it. Even though I don’t know you personally, I can relate, and think of you often.
Your posts are all beautifully written and important. But this one strikes me as absolutely essential, crucial. People mean well, but so few truly understand. Maybe they (we) will read your words and learn something.
As always, Lisa, thank you.
I don’t know how I can live with Stage IV metastatic breast cancer diagnosis without your words by my side. Just as I think that was the best post I have read…..you write another one that reflects EXACTLY how I am thinking. I don’t have your thoughtful and talented word expression. I am sending this post to my two young adult children so that they can understand how I am feeling about the their constant words of “live in the moment, Mom.” (I mean that in a loving and funny way to them!) We continue to laugh more and try to use realistic humor to deal with this situation.
Thank you, Lisa. Please be well, every day and all day.
You have me in tears, literally. Thank you for saying this. I am sorry that we suffer, but knowing I am helping others is what I want most. I know that expressing these complicated feelings we have is hard, and so if I can help you do that, I feel better. Thank you for telling me. It matters.
Lisa, thank you so much for educating me and so many others. You have certainly shaped my behavior when I interact with family and friends living with cancer. Thank you and blessings.
You. Are. Amazing. The way you have helped and continue to help both those with or without cancer understand the different aspects of this horrible disease is remarkable. Continue counting all the seconds, minutes, hours, days, months, and years ahead knowing how many lives you have touched in such an unbelievable way. Beautiful lady my hope is you are counting for a very long time.
Love you, Lisa.
I have nothing to say and so much to say about this post, in your talented way you’ve made us think and feel – so many things. For not the first and certainly not the last time, you’ve made me think how nice it would be to know you in person. What a gift you are to your friends, small comfort maybe, but they are lucky to know you. xo
Your words are so powerful and you express the truth of what you are experiencing. I see that you are living through the process of grieving knowing that your life will definitely be cut short and having so many questions going through your mind at once. All I can do is hope that through this experience you get to do the things you love doing while the chemo does not have such bad side effects (like the hand and foot syndrome) where the benefits outweigh the alternatives. I thank you for sharing yourself and I appreciate all of your words. XoXoXo-Susan
One of your absolute best, Lisa. xo
Thank you for your insightful posts, Lisa. Mom had her stage IV diagnosis just over 18 months ago. She lives with and is part of our immediate family and so much of what you say resonates with me. You’re in my thoughts.
Though you are suffering from chemo brain, darling Lisa, you’re also exploding from smart-as-shit brain. This is a tiny masterpiece of tact, emotion, truth, advice, love. Brava, lady. We are all rooting for you as we sit here reading you, riveted by every word. xx, D
Smoke….
even the smallest amount permeates and pollutes the air we breathe…
I love you Lisa, Sarah
This posts rings so many loud and true bells! One phrase in particular stood out to me as being so very important: ” ‘Roll with the punches’ and ‘live in the moment’ are deceptively simple phrases of advice that are not only absurdly emotion-free but also easier said than done… These are things that healthy people say.” ABSOLUTELY these are things that healthy people say. You would never find a Stage IV sistah (or brother!) saying that to you.
Thank you, again, for taking your seconds, your minutes, your hours and your days to write such beautiful prose that educates so, so many. We can all learn so much from you. Your blog should be required reading for anyone whose life has been touched by cancer. Which pretty much means everyone.
{{{hugs}}}
I am just blown away by your gifts as a writer. You are answering one of life’s crucial questions, “How to live?” in the most profound fashion possible.
I don’t have cancer and yet your posts matter to me in ways I never thought possible. This was so beautifully written. As a personal aside, my book came out today and I WAS RIGHT! (sorry folks, just something between us!)
Perfectly written, Lisa. Such a fine line between living in the moment and grieving the moment. Your words have such power, thank you for continually sharing them.
Thanks Lisa. Lost Panda this morning and am thinking hard on your words, his life with me, and how to go ahead from here. I Love you.
I just read the Stephen Colbert interview in Playboy…when he talks the grief he experienced when his father and two brothers were killed in a plane crash:
The interesting thing about grief, I think, is that it is its own size. It is not the size of you. It is its own size. And grief comes to you. You know what I mean? Iāve always liked that phrase He was visited by grief, because thatās really what it is. Grief is its own thing. Itās not like itās in me and Iām going to deal with it. Itās a thing, and you have to be okay with its presence. If you try to ignore it, it will be like a wolf at your door.
Beautifully written. Prayers and positive thoughts are sent your way.
When my late husband was diagnosed with a terminal illness, I questioned him, “Do you ever wonder Why me?”
He said, “Why not me? Why should I be immune to what so many others have to suffer?”
He died thirteen months after his diagnosis, with the utmost dignity.
so eloquent and that last line. and the smoke. haunted, appreciative.
The bus comment? I will throw myself in front of a bus and throw another UNDER the bus because I have a response. You’ve written so eloquently and this is quite blunt. I’m not metastatic. I, too was diagnosed in 2006. My mom’s 2nd dx was in 2007. I’m presently waiting for her bone biopsy to be scheduled at MSK (likely next week). My sister tossed her MRI at me about 12 hours after mom’s news. She is having a surgical biopsy of an area they already biopsied over 3 yrs ago…..
I have some street cred and the bus reply:
“Yes, any ONE of us can be hit by a bus tomorrow but YOU are safely on the sidewalk, I’m (cautiously) jaywalking and the mets patients are jogging into oncoming traffic IN THE BUS lane during rush hour.”
You are spectacular, Lisa. And I will be at MSK more frequently than I would like in the upcoming weeks. Will let you know, would be honored to hold your hand across York Avenue.
HUGS…
AnneMarie
Chemobrain may be the one side effect to having cancer that isn’t so bad. And don’t worry… you’ll remember the important stuff. I love you, Lisa.
Dear Lisa,
After reading your blog about time I sincerely wish there was a way that I could give some of my ātimeā to youā¦that is if I am here on the Earth longer than you (we all know there is no crystal ball) so you can continue to love, teach, inspire and most importantly do what you do best ā be a mom!! If everyone that you have inspired gave up even a day youād be here for a long, long time! We love you!
Lisa – this is beautiful and perfect. Thinking of you. Praying for you.
Lisa, you write beautifully. I too have stage 4 metastatic breast cancer. I was diagnosed 16 years ago with breast cancer while I was pregnant. Then 7 years later I was diagnosed with stage 4. So I have been stage 4 for 8 years now. What you write helps…thank you so much!
I have been living with a metastatic diagnosis for 19 months, with mets to the liver.. Cancer is getting the best of me, pain is increasing and energy is non-existent.. However, I still do advise women to enjoy the quality of their days. You are still in the throes of grief, mourning your lost belief in a long life. That will ease, believe it or not. People can get used to anything. And, those, like me, who suggest you enjoy your days and live in the moment are giving kind advice, not trying to be cruel. And, it is universal advice, because really, today is all we ever have, cancer or not. The rest is, and always has been, dreams. Only cancer makes you realize that in a very personal way.
That is not to say you don’t have a right to your grief and anger and fury and sadness and helplessness and whatever else you will feel in the coming days. But make sure, even through your tears, that you look up at a beautiful sunset. Make sure you appreciate a child’s smile. For those are the moments that have always counted.
People can say trite things, or things that you think minimize your pain and yet are still true. With bone mets, as you have stated, you may be posting ten years from now. You have a shot. You may not. It may be aggressive. You do not know yet that you will not have time but that will become more clear after a few scans. And, truthfully, we both know that 20 years would be a miracle. But there is still hope. Even with liver mets and being heavily pre-treated, I hope for time. Maybe a trial will come along and give me the time I want, or maybe the last chemo I haven’t tried is the one that sends me to NED for years.
Time is very important, without a doubt.
But, you can wish for time and notice quality at the same time.
The two things work together.
I sleep well. I sleep frequently. š But, just so you know, two nights ago was the first time since my mets diagnosis that I went to sleep without thinking “cancer.” I never thought it would happen, and I’ve been so sick of myself. But, if it can happen to me, it can happen to you. I went to bed, thinking of something I was excited about in the future and cancer didn’t cross my mind. I was astonished when I realized that, because as you know, the beast is always with us. Granted, it was the near future I was thinking about. But, I was not thinking about my disease. Someday, I hope for you that it will not be so overwhelming. I hope for you that you get that relief I did.
I am farther down the road from you and now I have found peace that my family will be okay, that life goes on without me. I am not angry that it has to happen but I sure do wish I had that time. I want to see my son marry, have kids. But, I have learned to take comfort in the knowledge that I am merely wanted, not needed, if that makes sense. It is the human existence. We live, we die. We all want it to be when we are old and our children grown, but many of us don’t get that. And, you can come to a sense of peace, even with that. It just will take some time.
Big hugs.