Wednesday, February 3, 2016

The Sweetest Words

Top of the roller coaster - again

The sweetest words in the English language include,  "I love you" and "You won the powerball, here is a check for 1.3 billion."

And, of course,  "Pathological Complete Response."

I have been lucky enough to hear two out of three of those phrases.

After being in remission for a year, my PET scan of October showed "moderately extensive metastatic disease."  Cancer was spreading all through my abdomen and spots were appearing in my lungs.  I was resigned, because this is the way cancer goes, but damn.  I just bought a car, I have a teenager who has a couple years left of college and my older son is getting married. My stepdaughter has the most beautiful child on earth and I am not done admiring him.  I didn't think I was about to drop dead, but I was worried I could be on my last year of life.  I pictured 2016 on my headstone.  I had intense pain (which is how it got diagnosed) and couldn't eat.  Living in the world of cancer advocacy,  I know way too many women who heard about a spread and died a few weeks later; this disease can move fast.  I feared the next woman mourned online could be me.


October Scan

After discovering this new spread, my doctor put me on TDM1, aka Kadcyla.

After 4 infusions, we wanted to see how it was doing.  Since my pain had dropped from an 8 to a 4, I was hopeful.  I had a scan yesterday, and today, I heard those sweet, sweet words.

I have a complete response to this chemo.   Nothing that looks like cancer to a scanning machine is left in my body.  Even the tiny spots in the lungs are gone.

I have heard NED twice now.  I am incredibly lucky.  Many women with metastatic cancer do not get this kind of news - ever.  I know a few who had a couple spots of bone mets that were stopped early and never progressed even years later, but most, like me, do chemo after chemo after chemo, cancer growing and retreating, until nothing works and then it's hospice time.  Very few get to hear NED twice, at least, in my (admittedly limited) experience.

I have an amazing medical team - a fantastic doctor.  I can't say enough good things about everybody there.   But so do others, there are many good doctors and caring nurses - for some reason, my body responds well to drugs that act on HER2.

We need more of these drugs, and more for other cancers.

I typically don't ask prognosis questions but I couldn't help squeaking out, "How long do you think it will last?"  My doctor just looked at me quizzically, and I remembered, he doesn't have his crystal ball.  I've been around this block, it could come back in 2 months or stay gone for years.  That's why I normally don't ask.  I smiled and said, "Never mind."  I'll take it as it comes.  That is what we with mets earn to do, and it is not a lesson that can be lost.


Go ahead, knock me down.  I dare you!

In a way, as great as this news is, I feel like one of those punch ball "bop" dolls.  Remember when you were a kid and had one?  At first, you could punch and kick the shit out of them and they kept rising defiantly.  Eventually, you'd punched them so much the air dissipated and they would lie tiredly on the floor for a second before they came up slowly - but they still rose; weaker but with determination.   After some time, wrinkles appeared and half their body would remain flopped over, but the other half?  It still arose.  It was down but not totally out.   Eventually, you'd put them in your toybox and close the lid.

Emotionally, I am realizing - holy crap, I have to spend more years in treatment, still going to doctors, getting chemo, getting scans,  managing pain, not healthy enough to work but wishing to do more, and never knowing the future.  Chemo every three weeks, ad infinitum.  I've heard the best news possible, but cancer isn't gone.  I'm in treatment forever.  My life is about continuing to be beaten and rising again.

And then I think HOLY CRAP!!!  I GET TO SPEND MORE TIME GOING TO TREATMENT!!! HOW LUCKY CAN I BE?

Go ahead cancer, kick me.  I'm still popping up, and it looks like I will be for a while.  So my goal (again) is to pump some more air in, in the form of food and healthy lifestyle so I can pop up with a bit more energy.  I am not hitting that toybox for a while.

I asked my nurse if she'd seen anybody have my response after all the treatment I'd been through, and she said no.  Everybody seemed elated at my news. My nurse took a walk down memory lane, remembering how sick I'd been a couple of years ago on Gemzar.   My doctor laughed, "Now you have a good blog post."

He's right.

Statistics state that 22% of women diagnosed with Stage 4 cancer live five years.  Median life expectancy is 2 years.    It will be 5 years for me in May; the month my oldest son marries.  There are no statistics for how many live 10 years probably because few do.  

I don't know why I am lucky enough to get to hear this news, again, when so many wonderful, lovely people don't get to hear it even once.  But if I give any woman hope:  that it can be them, that metastatic breast cancer is something that some of us live with for a while, maybe a long while, that dreams can still come true and goals reached - than I will keep going and posting and putting myself out there.  I will do what I can to help metastatic women, help our voices be heard.  It is not an easy life; it's a life with unique challenges, but it's a beautiful one.

I know I needed to see people like me back when I was diagnosed, to know it was possible to live past what you see and hear online.  So here I am.

When I told my youngest son, he said, "You are crazy good at fighting cancer."

Yes.  Yes I am.





The Sweetest Words

40 comments:

  1. Great News Ann. It is indeed great to hear that sometimes a new chemo does work, when you thought you were out of good options.

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  2. I have also been blessed with NED twice. I truly hope NED lasts a very long tie for you. In the meantime, keep enjoying tat grandbaby, looking forward to the wedding, and plan to be at your son's graduation.
    Elizabeth J.

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    1. Ah, good to hear I'm not alone in my miracles. Hope you are still in the dance, and yes, all of those things are on my to-do list. A couple even written and in pen. :).

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  3. What a roller coaster, but wow, I am thrilled to hear your news. May you continue to keep rising.

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    1. Roller coaster for sure. But the view when it's up is wonderful, and hopefully I won't have any stomach dropping lows for a while.

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  4. I remember Jeanne, who also had Her 2 cancer and lived many, many years with mets. I think they have made progress with treatments for Her 2 disease. I was treated for Stage IIB almost ten years ago and haven't had a recurrence. I'm glad if I do and it's Her 2 again, I'll have some effective options. Of course, I want cure, but I'm happy you get to get up again. May you get to do what you most want with this time.

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    1. Ah Jeanne, she was amazing. She was in the TDM1 trial, I remember. Her cancer landed in her brain, but she did deal with it for over a decade. I'm sad she's gone.

      Here's hoping you don't relapse. Goid as the treatments are, it's still not a life you want to live. Stay healthy! That's an order! :)

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  5. I'm in my 6th recurrence! Most recent was mets to lungs (lymphangitic carcinomatosis), July 2015. We switched to Kadcyla and have seen improvement! No more NED for me, unfortunately. My stage IV diagnosis came in Aug of 2012 and I'm quite aware of that dreaded 5 year mark and reading it here made it that much more real. My body is getting tired with each infusion. My will and spirit remain strong and unwavering. Am I scared, no. Am I ready for whatever comes next, yes. Blessings to all.

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    1. Hope your improvement continues and you hear NED. It is always good to be prepared for the worst but sounds like you won't need it for a while. Stay strong!

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  6. Amazing news Anne. Long may it continue!

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  7. I hope you keep being crazy good at fighting cancer and that you keep writing this amazing blog.

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  8. Congrats Anne! I got the same good news as you on Wednesday. It's great to know you've got ore time to enjoy life tot he fullest!

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    1. Yay!! Congratulations! It's a good feeling, isn't it? One is wish for every cancer patient.

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  9. Ann, my guy and I had such big smiles on our faces all night, thanks to you. I simply love this news and I shared it with my friend for encouragement. You are living proof that we are NOT an statistic. We are all different and react differently to treatments. I will try to keep that in mind. Congrats to you! May you stay NED longer than you had ever expected. We love you lady! xo

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    1. Back at'cha! No, we are not statistics, and those numbers are old anyway! Every person and every cancer is different. You never know what you'll respond to. Just keep putting one foot in front of the other.

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  10. Such inspiration. My breast cancer was caught in stage one but I have always felt that I will be facing it again at some pt in my life. I am seven years cancer free this month and each month is a blessing. I have been sitting on pins and needles waiting for the results from your scan and there it is , perfect in everyway. Thanks for sharing it so quickly, life is hard but it is good.

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    1. I hope you never do face it again, and I hope you don't worry too much. Most women do not relapse, but of course, it seems common because all of us who tell our stories. It sounds like you have an appreciation for life, having had the disease once. Wishing you a long and healthy life!

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  11. Yes!! Kadcyla is fantastic. I was hoping this would happen for you. You should start feeling stronger with each passing day. What a wonderful drug it is!

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    1. Yeah my first infusion was awful. I had nausea, vomiting, neuropathy, the whole works. Next infusion...nothing! I felt fine. Now it's as easy as Perjeta. And short too. If the terrible pain I had was from the cancer and not a kidney stone, then I guess I'll know for sure when it comes back. I think I'm pretty sensitive to what's going on inside me, lol. Right now, I'm doing ok. On to trying to gain weight.

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  12. I starting following you when I received one of those letters from my mammogram- they have found something abnormal. Well- it turned out to be nothing - but I continue to follow you because of your beautiful writing and the wealth of information you share. If I or anyone around me gets sick I feel much more educated. I am so happy for your news. There is more to do, see and experience. Congratulations!!! You're showing cancer who's boss!!

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    1. Thank you! I hope you never get a letter like that again!

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  13. So happy to hear this!! Amazing!

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  14. Yay! So happy for you (and for us!) that you keep bouncing back up.

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  15. Your news brought me to tears, Ann. I am very happy for you. I've never had a response to any of the many treatments I've had. I still hold on that maybe this will be the time. Thank you for giving me a little shot of hope!

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  16. I have been reading your blog since my mom and sister were diagnosed and haven't commented before, but just wanted to say I am so happy to hear this news for you.

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  17. I am SO happy to hear this news. I love your writing, Ann. It's always such a pleasure to kick off my shoes and read your latest post. May there be many, many more! I go to bed tonight feeling a little glow of happiness at your news. Linda A. in Boston.

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  18. I'm so very happy and relieved. Now, go and spoil that grandbaby and put on your dancing shoes for the wedding!

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  19. This is great news Ann! Glad to hear you responded so well. :)

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  20. Amazing!!! So happy you shared such great news

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  21. I'm still new to your blog, but have been going back and reading through your older posts; it's amazing to hear that you're NED again!! Congrats��

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