Today marks the six year anniversary of the day I was first told I had breast cancer. When the radiologist told me the news, she also said she didn’t know exactly what it was or how bad it was.
This is why you do not schedule mammograms or biopsies right before a holiday. Especially Christmas. You’ll be going on vacation… and if you aren’t going on vacation, the doctors, nurses, and pathologists will.
I was told on December 20, 2006 that I almost certainly had cancer based on the mammogram and ultrasound images. I’d need a biopsy to confirm it. But they couldn’t do the biopsy until after the new year. It’s hard to hear, “We think you have cancer. Now go on your vacation and when you come back we’ll figure it all out.” Weeks later I was told I had extensive DCIS and would need to have my left breast removed. I opted to have a double mastectomy. A few weeks later a second look at the slides revealed I had some breast cancer in one of the lymph nodes that had been removed (I am now a big advocate for a second opinion on pathology). I was reclassified as having stage II breast cancer. I had chemotherapy; later, a salpingo-oophorectomy.
Almost six years later, I have now found out that I have stage IV (metastatic) breast cancer (details here).
Yesterday I went to an appointment with my local oncologist. I go to see him every two weeks right now to review bloodwork and to discuss dosing for the next round of chemotherapy which starts tonight.
The concept of “good news” has been completely redefined since my new diagnosis. There is no cure, so I can’t hope for that. There is never going to be a day I am not aware of running out of time. Now “good news” gets defined as stable disease. If you’re lucky, and the chemo is working, good news can even mean reduced disease. Now I hope for that.
I look at my oncologist’s face when he walks in the room. I scan it for signs of what kind of news day this will be. The day he told me about my metastasis I read his face. When he walked in that day I asked him how he was and he said, “Not good.” I assumed it was something about him, his family. I immediately starting worrying about the bad news he was going to tell me about someone else. But it was my bad news. It was my nightmare.
I never used the word cured. I never said it. And I don’t like when others do with my kind of cancer. I always prefer the technical terms NED (no evidence of disease) which means it may be there, but we can’t detect it with the tests we have done. I don’t even like the term “cancer-free” for my particular cancer… again, there might be cancer there, but just not enough to be detected or can’t be with the tools used.
Five years had come and came and gone. Even nurses in other specialties would say at my checkups, “Oh! Five years! That means you’re cured!” and when I’d explain to them that it actually didn’t mean that at all with my kind of breast cancer they would look at me quizzically.
“SEE?! I told you!” I want to go back to say to all of them. I was vigilant for a reason. It “shouldn’t” have happened based on the statistics, the predictions. But it did. And now the only life I’ve got is spent dealing with it.
……………..
I watched my oncologist’s face yesterday. We’ve had some bloodwork results in the last two months that have been a good first step but he hasn’t been willing to budge much on declaring that this chemo is working. One or two data points are not enough for either of us to feel confident, actually. But yesterday we got our fifth data point.
I still have metastatic cancer. That isn’t going to change.
But I have some news I can finally share: my bloodwork is showing “indisputably” (in the words of my doctor) that my cancer is shrinking. The chemo is working. The pills I’ve been swallowing, seven or eight a day for seven straight days at a time, in alternate weeks, are doing what we’d hoped. The cancer is still there. But it’s smaller. But it’s responding. It’s been consistently trending down since I started on Xeloda. Now, with more than a few data points, we can finally characterize the effect and I can share it publicly.
……………………….
So what does that mean? I know that’s the question most will ask. It simply means this is the chemo I stay on for now. It means that I just keep doing what I am doing. I’m not “cured” or “feeling better” or “cancer-free.”
It means that modern science and pharmaceuticals are giving me some time. For today, the cancer is responding, shrinking. And in the land of stage IV cancer, that’s unmitigated good news. Make no mistake, it’s no Christmas miracle. It’s not happening for any other reason than the fact that I am aggressively taking as strong a dose of this drug as I can tolerate, and it’s doing its thing.
Six years ago I went on Christmas vacation and feared for my life. I was scared and confused and miserable. Now, six years later I’m in a much worse place vis-a-vis cancer but my mindset is different.
I’m coming to terms with accepting the life I have — the one I thought I’d have is gone. I have created a new one. The best one I can.
For today, I celebrate the good news. I will go to my children’s school holiday parties. I will smile. I will make memories. I will not focus on side effects. I will find beauty in something small.
I will savor the things I can do today.
Link to Twitter
Hey Lisa, I’ve wrote to you before about my hubby’s metastatic breast cancer. just to let you know, he starts xeloda next Friday, his oncologist gave him the choice of whether to start tomorrow or next week but he’s just finished radiotherapy which has wiped him out so he opted for after Christmas! Reading your blog helps to know what to expect with this next phase! I’m glad to hear that it’s keeping you stable, I will continue to follow your story/blog xx
“Responding” is the word I was hoping to read. Just took a huge breath. I love you. Thank you for sharing this news. I will air hug you later today. Hopefully that break is healing, too.
I’m clinging to every bit of ‘good’ news you get. I’ve read this and let out a little sigh of relief for you. I am so glad that the treatment is working.
Thank you for sharing your updates. I wish you and your family the best Christmas you can possibly have, and I hope that you see many more.
Sue
xxx
I stumbled across this by accident on Twitter. Your attitude and intelligence are an inspiration. Have a brilliant holiday season with your family.
This makes my day. Finally something good for you instead of more bad news. I wish you a peaceful holiday with your family!
Just thinking about you and hoping you enjoy the kid’s holiday parties. Have an extra treat, you deserve it for all you’re going through. Still wishing for a miracle if that’s ok 🙂
So glad to hear this news. And make no mistake it is good. The chemo is working, that is forward progress. Throwing tons of energy your way that it keeps working for a very, very long time.
Today I will celebrate with you… and I too will smile and find beauty in something small and think of you. Thank you for sharing your news with us. xoxo
I wish for you a lovely day of school holiday partying. You’re the one bringing the paper goods, right? 😉
The very best kind of Christmas gift.
Oh, Lisa. I wish my Mom lived in the 21st century (I mean have a computer!) I would have her read your post. My Stage IV metastatic breast cancer in my spine is “responding” to my treatment (Flasodex and Xgeva) right now. The six lesions are smaller in size on a bone scan. My Mom has told everyone we know that I am in remission and cured! She is 80 and has a “bold” personality. I have tried to educate her but she doesn’t hear it. She desperately wants me to be cancer-free.
Again and always, your blog post is a keeper for me. I will return to this post over and over, especially when I am sharing some “good” news and how to frame it so I am not implying some miracle has happened and the cancer is gone. I honestly don’t think there is “good” news with metastatic breast cancer. There is only hopeful news of more time of feeling well. Thank again, Lisa, for putting into words my dilemma too.
Be Well, every day and all day.
The last sentence is something wonderful that should be practiced by everyone, no matter whether healthy or ill. Glad that the harsh medicine is doing its thing and allowing you a little peace of mind during this holiday season.
I am so happy to hear that the cancer is responding to treatment. That is terrific news. Your acceptance of the life you have, even though it’s not the one you thought you had or wanted, brings tears to my eyes. You inspire me, Lisa. Thank you. xox
Lisa… With my new diagnosis every word you write strikes a cord. Thank you for putting into words what I can’t yet. Enjoy the holidays with your family. You’re in my thoughts a lot! Thank you for reaching out to me on Monday night.
This is such good news. I’m so happy that the cancer is shrinking and you are able to get more enjoyment from your holiday season. May you continue to respond well to treatment with minimal side effects and the strength to enjoy your precious family.
xoxo
Lisa- My thoughts and hopes are with you all the time. That is wonderful news, for any length of time that is. Have a wonderful time with your kids today. XXOO
I am so glad to hear this. Time. It is a gift we never realize until it is running out. I am glad you have more of it. I send love. I will be gone for two weeks. So I hereby send you fifteen days of little remembrances, all wrapped up in a package with silver paper and a turquiose bow. Love to you from me every day until I return. Merry Christmas. This will be the best one ever.
oh boy, I hope this isn’t the best one ever, Molly! 🙂 The days of good health were better, methinks. I will remember your virtual gifts every day until you return. Have a great vacation.
Loved this line, “But I have some news I can finally share: my bloodwork is showing “indisputably” (in the words of my doctor) that my cancer is shrinking. The chemo is working.”
I hope for more good news.
I know too well that life is equivocal. But I loved hearing this. Thank you for sharing it. Sending you all (annoyingly non-substantial) hugs and hoping to see you soon.
So happy to get a little bit of positive news. Enjoy your holiday parties and know we’re all thinking about you. Xoxo
So, so happy to read this today! Does this mean anything regarding your shoulder/rib pain? I hope that’s improving due to the cancer shrinking as well.
Lisa – I find beauty in you and your beautifully written words everytime I read one of your posts. The grace, honesty, informative, and heart wrenching news you give to all of us is a gift from you I know I can never repay. Responding is a beautiful word and my hope is that you hear it many more times. I send a hug from PA and the wish that you and you family have a relaxing and peaceful holiday.
I drive everyone crazy when I say always get a THIRD opinion. Based on doctors and diagnoses I had at 13, I know doctors are fallible and can’t always agree. But a 2nd opinion is better than just one. If you teach people that, you’ve already contributed greatly to the world. Glad the chemo is working.
Lisa, I can’t get over how beautifully, calmly brave these posts are, and how utterly, utterly humbling it is to read you and to know you through these words, and through your insistence, despite distractions, illness, anxiety, and fatigue, to observe cleanly. “I watched my oncologist’s face.” I could weep.
This evokes in me the same awe I felt when I learned of the Sandy Hook principal and school psychologist charging out into that hall to confront, head-on, the worst thing that could ever happen to their school, their lives, their schoolkids, their world. As Obama said (paraphrase): We’re in awe because we’re seeing here people behave the way we’d all like to think we might have the strength to behave in similar circumstances. It could hardly be more humbling to watch.
Something I can do, tell me. And bless you.
David
Love this post and inspired by how eloquently your express yourself. I learn more and more from your incredibly brilliant and honest disclosures. Thanks for sharing with us.
This is truly wonderful news. Something cheering for the new year. All best to you and your dear ones.
Good news! I’m so glad the trend is going in the right direction. *smiling*
Really happy for your indisputably good news. Happy Holidays!!
Meg
That IS good news, Lisa. Thank you for sharing this and all your moving meditations on a condition we all wish you didn’t have.
I just want to echo what others have already written – the beauty and dignity with which you write and give is such an inspiration, I feel I cant put it into words.
I’ve followed, and reread your blog since finding it when you wrote of your cancer returning , and even on days when I dont feel like turning the computer on, I always open Google reader to check for you.
Im almost finished chemo for IDC – last FEC on 18th January (tried one TAX – it hated me, and my hands – am still peeling the last of my layers of skin, there’s SO MUCH of it! At least my feet were spared) Really, I just want to THANK YOU – in a way you speak for so many of us and I feel honoured and humbled that you share your journey with such generosity.
Tracy x
I’m so glad to hear the cancer is shrinking due to the chemo. Mazel tov! May your hands, feet, and all the rest of you have a joyous, sweet, love-filled holiday.
Lisa, I’m so glad to read this post with your positive news! I have such gratitude and admiration for what you do and how well you do it. Thank you for sharing with us your gift of being able to decode and write about the medical, technical and emotional experience of disease. By sharing the personal, you are informing and affecting the universal. I’m so happy knowing that you will be celebrating, smiling, making memories, savoring, and finding beauty. Warmest wishes and virtual hugs to you and your beloved family. Enjoy the holiday festivities — and every day together. xoxo
that’s unequivocally fantastic news! thank you for sharing. you are healing yourself and others with your wisdom.
So incredibly thrilled for you and your family, Lisa!
Enjoy this moment. Savor each small victory because every victory is HUGE. I send you love and as Barb (comment above) said, and I will reiterate, thank you for reaching out to her on Monday night when she was still reeling and trying to process her own diagnosis. THAT is the essence of you…. reaching for another.
I send love and peace for a joyous holiday with your family.
xoxox
AnneMarie
I can so relate to your outlook, thank you for making clear what was already lingering at the edges of my mind. My Father’s leukemia was beaten back by the chemo for quite awhile. “Responding” became such a wonderful term to hear. In looking back “cure” seems like it was a naive hope but of course the nature of hope changes over time and we become so happy to lower the bar of our expectations and take whatever we can get. Very good luck to you and may you have only good surprises.
I’ve run out of word to describe the eloquence of your posts, Lisa. You have framed this beautifully and I’m so happy to hear this update. “Responding” is the new “NED”, perhaps? The word says it all and you know I’ve never been a fan of the C or S words in cancerland. Embrace the holidays with the knowledge you are doing all you can and that your treatment is doing it’s job well. Wishing you and your beautiful family all good things now and in the year ahead. xxo
*its’ <– argh! ; )
Thank you for your beautiful and wise description of the way one must accept the new life after metastasis. Its so precise and true. Its another life, with a new concept for good news, its a more concentrated life in any way. Its hard – but understandable – to hear people talking hopefully about you being ‘cured’ etc. But its still a life, you still have extremely happy days after the new concept – you want to fill it with all the good feelings and people and events from the rest of your former life – and none of the bad – and a lot of it can actually be reached… right? Thats the only way to live from now on. Its a choice – but the only choice you have.
Just read your blog for the first time – will follow you from now on.
Lisa, I’m so glad that your cancer is responding to the chemo. I’m glad that you have this good news and for sharing your perspective.
If you’ve taught me anything — and you’ve taught me a lot — it’s to acknowledge and celebrate every single good thing in life, regardless of size. I celebrate you, and pray for you, and thank you.
Lisa,
Thank you for YOU…..I think about your thoughtful words every day…You give me hope and grace.
Lisa, I’m so happy to hear this small but welcome — and so wonderful — news. My [ouch, ex-]boyfriend’s mother is in her FOURTH year with Stage IV lung cancer, and through Tarceva, green eating, luck and some more luck, she is currently NED…. even though we all know the cancer there. She is now in a small 2 percent population who live two years past Stage IV terminal, and she is really living. Living with side effects, living with the open-ended knowing-but-not-knowing, living and traveling and sailing and loving and doing the best she can. As are you. All of us face death, but those of you who are standing in the eye of the storm, still living, teach us all. I’m sure it’s not a role you wanted, but please know you are doing a bang-up job of educating, inspiring and leading us all.
This is a most useful coutribntion to the debate
Well of course the debut of this dog’s dinner is not worth the destruction of B.I.Shadow (if that is indeed the case)……but no point in losing any sleep over it, as the formation of JE groups has no rhyme or reason other than what tasty morsels float the Old Kaiju’s boat at the time……We can all name at least 10 Jrs off the top of our heads that would be more capable than this lot (Kento and Fuma excepted)….The only mystery is, having gone for the zero-experience tots, how could he possibly have left out Kaoru?!……..
I have been following your blog for sometime now, Of course I came across this as I searched for ways to come to terms with my own challenges. I just want to say, I got to the last sentence of this entry and found the tears just falling. So happy for you and your last sentence just touched me to the core for some reason. Thank you.