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