I never learned how to juggle. I never could master the coordination of having control of one thing while letting go of two.
And yet, in my life, I am asked to do this daily. Three children, a husband, a house, the constant ebbs and flows of life and family and the demands those things take. Add stage IV breast cancer to this mix and it’s a daunting task at best.
“Too painful to think about” is something others can afford to say or think about those like me.
But I cannot. My body does not let me.
Perhaps having hair, looking healthy, betrays me.
Perhaps people forget what my body is enduring.
Perhaps they forget on a daily basis the struggle it is for me to do what I need to do. On some days the hardest task I have is the mental component of trying to deal with this all.
They do not know that while I drink my coffee in the morning and type an email I am prone to worry. I wonder if pain in my side or my back or my neck is cause for concern. I am mentally comparing the location of the pain to the bright flashes on the latest PET scan. I try to remember my body’s details on that scan. I create a split screen in my mind. I contemplate if the spots align, if they don’t. I have memorized the words in the radiology report. When I want to torture myself I recite them.
There is no “moving past cancer” anymore or counting down to the end of chemotherapy. There will be no day of claiming victory and yet my victory is defined by each day. Winning is not possible, its re-definition now just seeing how long I can keep running, outsmarting the cancer that’s here to stay.
I waved a triumphant flag six years ago. I was done with surgery, treatment. My chances of a recurrence or worse, a metastasis: small, small, small. Single digit. The odds were in my favor. “Look where those odds got me!” I scream inside.
I serve as a terrible, disturbing reminder to those just starting treatment: you can’t be sure. You can’t get cocky. You can’t ever be positive that you are done. Perhaps you live your daily life that way, but it can happen. Even years later, it can happen.
That wily son of a bitch can lay in wait, cells silent, dormant for a while. And then, when you least expect it, spring forth to attack, to ravage, to ruin all you know is true. This is why I bristle when people with my particular kind of cancer say they are “cured.”
I hesitate when people ask me how I am.
I know they want to believe I am okay.
Even for today.
They want to believe there will be a happy end to the story.
But there cannot be.
This is not my middle age. I will not be that lucky. While others complain of gray hair or wrinkles or saggy bellies I long for them. I want to earn those badges.
I want to flaunt my age.
But let me flaunt a number that begins with a 5… or 6… or more…
I now know this is why my doctor had that look on his face when he told me the news last October that my cancer had metastasized. This is why, when he gave me the news, he let me cry and swear again and again and again when every word in the English language but “Fuck” left my vocabulary.
This is why a particular doctor I know looks at me with sadness in his eyes when I see him, when he hugs me, when he tells me “you look good.”
That doctor looks at me like that because he has the curse of knowledge: he knows how this will go.
He knows. He knows this story, he sees it daily. He knows what’s coming. He doesn’t want me to see the ending but it will come. All we are doing is pushing the “pause” button as many times as we can. When I hug him I feel it. The regret. The pain. He knows what waits for me. It makes me sad to see him in the hall sometimes, as if that feeling can be transferred between us in a look, a hug, a touch. But that compassion, that pain… well, those are honest moments.
Perhaps I ramble today. Perhaps my weary body and mind make no sense. Perhaps I should hit “delete” and send this down the drain. But this is all part of my story. If I am feeling it, I know somewhere someone else can relate to it too.
Every day is a struggle of one kind or another. I am doing the best that I can.
And oh, how I wish I could forget. How I wish I could forget.
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Lisa, this struck me so deeply. You’ve manage to write so eloquently about the feelings many of us carry around post-cancer. It’s never over. You’re in my heart always.
Recognisable to many of us, stage IV women. Thank you for writing it down and spreading your text.
Please never hit delete, Lisa. Your words are way too powerful and important for those of us who have been diagnosed with breast cancer.
Thank you for sharing them with us.
Please don’t hit delete because to do so would be to obliterate the thoughts of thousands of others with cancer – breast, ovarian, colon – all of them.
The word that strikes me especially hard today is weary. A metastatic diagnosis gives is another kind of knowledge most my age are not concerned about. Weary. Weary. Weary.
Yesterday I sat next to a woman in her late’s 70’s at a shower. She was complaining about her adult children and tears stung my eyes briefly. She thought I was identifying with her – but anyone reading here knows otherwise.
Thank you.
I feel your pain and could not have said it better. I am on my 3rd occurrence of cervical cancer. Have had op in 2009 & radiation 2011. Now have complications caused by that and they want to try chemo but I am not convinced. You are right the mental torture and holding it together daily is the worst especially when we have kids. I wish you strength x
You ARE doing the best that you can. There is NEVER a reason to hit delete. You are facing, with grace, courage, and fear, the day that will come for all of us when you know yours will be coming sooner.
You wake each morning, eyes fluttering to greet a new day, and you know what lies before you. Today, just today. One day at a time. No future, no past, just now. That is all any one of us has. Only you know your nows are absolutely limited by your diagnosis. Yet, you are here, sharing and giving it all to us.
And I thank you.
I know that look from my oncologist too. He wants to be hopeful yet he knows too much to really believe it.
I wish that were possible for you, too. For all of the “yous” who suffer from this evil disease. 🙁
XXOO
Thank you Lisa for your writing. You thoughts are so well stated. I wish the best for you!!
Thank you for the privilege of letting us into your world. Your honesty has enriched every reader’s world.
Oh. Sending you a gentle hug and so much appreciation that you are here, that you are writing.
I have no words. Just a full heart and the hope that the pause button continues to work for many, many full days. Love to you as always.
Having recently been declared “cancer free” after seven months of dealing with Stage Three, triple negative breast cancer, I do not share the joy my family and friends feel now. I know that recurrence is a reality, regardless of the excellent prognosis described by my oncologist. Knowing you, Lisa, has taught me that cancer will never be “over”, I will always be looking over my shoulder. There is really no “beating” cancer…only remission. That’s the brave truth.
stark.eloquent. well written.
like much of the best literature.
not sugar coated or pleasant.
thank you
Hi Lisa,
Each of your posts is fabulous in its own right, but this one may be one of the Top Five. If knowledge is a curse, I think we’ve all just learned why so many “awareness” campaigns are a giant, but different “F” word: FAIL. From sugar-coating breast cancer to painting an unrealistic picture that misleads women until they are sucked down the rabbit hole. Every one of us takes a different path, but every one of us is also at a very real risk of a recurrence, even if like yours, that risk was in the single digits.
Your truth, honesty, and candor (in both of your diagnoses) have helped to take some of the stigma away from MBC and has empowered other women to raise their voices and strengthened their resolve to become catalysts for change and demand more than the status quo. At least that is what you represent to me, Lisa. Not fear, but pure strength in the face of adversity.
xox
It’s a rare gift. Your writing is more felt than merely read. Keep it up my dear. You have a rare gift.
Beautifully written. Never never hit delete. These words are too valuable to lose and has enlightened osomany people unaware.
Yes, some people have the nerve to complain about gray hair or being over weight… yet how dare they when there are people dying of cancer after enduring years of medical treatment to no avail who only want to continue living their life with their beautiful family in their beautiful house. How dare others complain! Whether they are homeless and starving with nobody to call their own, whether they have been paralyzed since birth, or whether they simply live with a degenerative disease… at least they get to LIVE. Nothing compares to cancer; no one else has it so hard.
You are not rambling at all, Lisa. You are saying what I am feeling as a Stage IV MBC patient. My medical oncologist looks at me the same way and hugs me a bit too hard when I leave. She knows.
I don’t know where I would be or what I would do without your thoughtful words. Thank you for validating my world.
I wish you to be well today and all day.
Timely post. I have barely finished treatment for stage 3C BC that had spread to 20 of 20 lymph nodes. Everyone is congratulating me on finishing treatment,thinking its all done and over with. When I try and tell them thats not how BC works, I can tell, they think I am being negative or just arent wanting to hear it. With a double digit chance of recurrance I will be looking over my shoulder as well. My husband and I often joke that the extremely kind treatment we receive makes us suspicious of what my true prognosis is.
Lisa, having been the caregiver I know how easy it is to slip into denial and want to treat your loved one like they have just a serious cold, to want to hold on to the clique “this too shall pass.” It’s hard to look at the reality that someone with cancer lives with, esp. someone you love, care so much about. To know there is no simple “cure” and you have no means to make it go away.
Those of us on the sidelines, your “pit crew”, as it were, that help you with the day to day, making meals, cleaning, helping you throw a birthday party for your child, getting you to dr. appts., really doing anything and everything you ask to help you, to hopefully make life, as you know it, as easy as possible. That love in action is all because you are the person you are and you are valued and loved and your thoughts and feelings matter.
We ask with sensitivity “How are you Today” instead of just “How are you?” We ask for small bite sized pieces of information but share with us what You need to, in what detail and to what extent you need. We WANT to be here for you. What you are going through matters to us. We want you to help us understand where you “are” and what you need from us short term, long term, this moment. Always be honest, rage if you need to. Never delete what is true no matter how raw because we need to know it and more importantly, you need to express it.
Your words “my victory is defined by each day” I appreciate so much. Today, Lisa, rest assured you are heard and I so dearly hope the words you receive in response validate to you how much you give to us by sharing them. Thank you.
Please don’t hit delete. Your posts–and the comments made by the members of your ‘pit crew’–are too important. Sending warm hugs.
Lisa – I have read that those diagnosed with a terminal illness become very honest and that certainly shines true in your hauntingly beautiful writing. However, it seems to me that you’re just an honest, straight forward kinda girl and I am delighted for you that that’s the kind of life you have been and are living, cancer be damned! I am heartbroken for you too, though, because I know that you don’t want to leave those beautiful children of yours and will do so kicking and screaming. My hope for you is that you still have years left with them – to cherish, nurture, love and mold them so you’ll live on not only in their hearts but in the little Lisa-isms that they’ll inevitably pick up along the way. May you be well long enough so that you will feel more ready to leave them in the care of their loving dad and the pit crew.
I am so sorry. Just so sorry.
Lisa, today as with many days after reading your blog, I find myself feeling very small and petty. Thanks for putting your words, your feelings, out there. Please don’t ever consider DELETE… I appreciate your thoughts. I hope you know that you are making a difference. You are making a difference for so many: caregivers, families and most of all your own children. Thank you for including us!
I’m glad you did not hit the delete button and send this post “down the drain” Lisa. Your feelings are an important part of your life. This is your story and every word of it matters.
I too am one of the unlucky ones whose breast cancer (stage 2, nothing in the sentinel nodes, low probability of recurrence determined from the OncotypeDX test, no family history) recurred 3 years later and has spread to my bones, liver, pancreas. Thank you for writing and posting this one. I too have children although mine are a little older. I want to see them take their place in the world. Metastatic breast cancer is a whole different thing–no survivor blather, many fewer meals brought to our home, monthly checkups with my oncologists, CAT scans every 3 months, an accumulating number of treatments when the scans show the tumors have grown which they inevitably do, the cancer is always there lying in wait like some terrible monster.
Lisa, I so totally identify with your feelings. I was diagnosed with metastatic breast cancer 8 years after I thought I was “cured.” Saw 3 doctors every 6 months who told me 5 years cancer-free was great, 7 years cancer-free was great, then it was like out of nowhere, suddenly I had Stage IV breast cancer in my liver and bones. I have had what I guess one would call relatively successful treatment (in the sense that I am still alive, even if it takes me at least an hour to get out of bed each day) for 4-1/2 years. Started a new chemo about a month ago but my tumor markers are going up, so the fear is back. I so understand how you feel when someone asks how I feel, they don’t really want to know. They ask me all the time how long I will have chemotherapy and don’t want to hear that it will be for the rest of my life. I loved how you said you and your doctor keep hitting the “Pause” button. I feel exactly the same. My children are older, but you are never finished “raising” them. Then there are the grandchildren. What if they forget me? What if I don’t get to walk my younger son down the aisle? What if I don’t live long enough to see my oldest grandson become a bar mitzvah in 2017? It is all so painful, every minute of every day. And I love reading your blog, it expresses your and my feelings so beautifully. I am writing a book called “Lucky Considering.” I wish you as long a life as possible and freedom from pain.
Lisa, I am so sorry for what you’re facing. Your vulnerability is so courageous. I hope you are surrounded by compassion and beauty.
I don’t know you, but your words resonate all too well for me. Three years after treatment for early stage breast cancer, I had a recurrence in my lung pleura this spring. I too was told my chance for cure was in the single digits. I too feel betrayed by those digits, and by the word “cure” itself. Just today, I was thinking about how to balance the intense desire to be fully present, fully alive, in every moment, with facing and coming to terms with what’s to come, who knows when. It is impossible to fully explain this balancing act to loved ones, for them to fully understand. You make me feel less alone. You articulate the hope and the fear perfectly. Thank you.
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