Monday, October 3, 2016

An Announcement

Last Friday, Quinn's class had pajama day and an ice cream party to celebrate the number of "class compliments" they've received since kindergarten started eight weeks ago. He has grown up so much these past couple of months. He's made new friends and started to find his way at a big, new school with big, new rules. He is learning to read, playing soccer now, and asking for time with his friends more and more. Our dynamic is shifting, and I'm trying to breathe my way through it.

But after school last Friday, he went to the bathroom, then walked around the house in his pajama top and underwear, sending me straight back to his toddler years when he refused to wear pants at home. A glance at his thighs alone had me in tears before I knew what hit me: a nostalgia for what wasn't, for something we'd missed, for a past I can't change.

I spent that evening watching old videos of Quinn: swimming, opening Christmas presents, on our way to adopt our first dog (the one that ended up biting him in the face), telling me I was his best best friend forever. I am a puddle of emotions. How is he five and a half? Again, I borrow from my friend talking about losing her mom: "Two years ago today my sweet mama bear was diagnosed with ALS. Two years. Two years. Two of the longest years of my life. Two of the shortest years of my life. Time bends and twists and deceives the eye and heart and mind. Time, you weirdo contortionist." Time is a weirdo contortionist.


What might it be like to raise a child and not have the fear of cancer looming over you every moment? How might those early years have been different? How might today?

This is one of the hardest posts I've ever written.

***

You guys know I haven't written here much lately, and I haven't posted a health update in months. I know you've noticed. Some of you have asked, and I've been vague.

I haven't known where to start. I've wanted to be certain, as certain as one can be when talking about one's health, anyway.

Chris always tells me to start with my elbow.

A skin biopsy at the beginning of the year led to questions about my cancer staging. My oncologist wanted to take me off chemo based on the results, which came back as something called sarcoidosis. I wasn't ready to let go of my chemo safety net. Not because of a pea-sized thing on my freaking elbow.

Then I had a scan in March that lit up like a Christmas tree: in my chest wall, my abdomen, my left lung, my spine, the list goes on. I walked out of my oncologist's office as he was handing me the radiology report. Fuck this, I thought. How does anyone deal with cancer progression? How does one face their spouse after news like that, without exposing every fear simmering under the surface? You just hope your partner is a little stronger than you in those moments. Because one of you must steer the ship, and after reading "likely for metastatic disease" in about five different places, I was in no position to steer anything. Afterward, you hope that your partner will take you out for a drink even though it's the middle of the day.

He does, bless him.

Over the next couple of weeks I underwent a slew of tests to determine what was happening in my body. A spine MRI and a pelvic ultrasound were both "unremarkable" despite showing activity on my PET scan. A lung biopsy left me with a partially collapsed lung and a twelve hour hospital visit, but the results were benign: a granuloma with characteristics of sarcoidosis.

Not cancer. Not this time, at least.


I went for a second opinion at the Mayo Clinic. What the fuck? was my basic question to the oncologist there. "If this is metastatic breast cancer, it's the strangest case of it I've ever seen," he told me, after reviewing my scans from the last four and a half years. "We don't tend to see recurrence after a pathological complete response like you had, not with Her-2+ disease."

Where had he been the last several years of my life?

***

Sarcoidosis is an autoimmune disease that causes inflammation -- typically seen in the lungs, skin, and lymphatic system. They don't know what causes it. Bernie Mac died from complications of it, but it's usually not fatal. While it sometimes goes into remission on its own, the treatment for sarcoidosis is steroids.

Like the ones I'd received with every single chemo infusion over the past fifty-four months.


Three doctors agreed on a course of action: take a break from treatment and re-scan in three months. Those months were a series of panic, panic, Xanax. Like a bad game of duck-duck-goose.

And then my three month scan came at the start of the summer. It was clear as a bell. Clean as a whistle. The radiology report suggested a "complete response to interim treatment," except there hadn't been any interim treatment.

Metastatic cancer doesn't clear up on its own.

I cried big tears in my oncologist's office, part relief, part are you fucking kidding me, part hope that any one of my doctors knew what they were talking about. "I hope those are happy tears," he said. "It's not every day someone gets a miracle like this. This is better than winning the lottery."

To which I say: yes, mostly. I imagine it's also like being wrongfully imprisoned and then released after nearly five years and told to go be happy. I am happy, but this news has required a lot of processing. Like, a shit ton of therapy. I'm still processing. I'm still a puddle of emotions every time I catch a sunset. Or a glimpse of Quinn's thighs.

***

As the news -- that my so-called metastases have always likely been sarcoidosis -- sinks in and starts to seem more real, I have continued to advocate (albeit a little more quietly) on behalf of the MBC community. But it has come to a point where I feel like in order to amplify my voice and those of my friends living with mets, I needed to be able to do so in a way that upheld my integrity, that allowed me to be my most authentic self.

I haven't been restaged, but if I had to guess based on the size of my original tumor and the number of lymph nodes removed during my surgery, I was probably Stage 3A. I don't know if I'll ever know. As one new friend recently put it, "I will always consider you a Stage 4 survivor." But I am no longer considered a metastatic breast cancer patient.

While I have superb insight on what it feels to be one, I feel it is only fair to withdraw myself from Pfizer's Story Half Told campaign, which aims to shed light on the lives of women living with metastatic breast cancer. Pfizer's team has been more than patient with me on the timing of this announcement. But I know that October will be a big push for the campaign and the stories of the women involved. I could not honorably continue as a face of MBC after learning the news I've learned this summer. In no way do I want to distract from my friends who are facing this disease day in and day out.

I will continue to do whatever I can to bring awareness to the men and women living with MBC, to advocate for more research funding, and to bring hope to people that there is life after a terrible diagnosis. In some cases, the details of that diagnosis may even be a terrible mistake. If my story isn't a plug for second (and third) opinions, I don't know what is.

To the few of you who've shared these past few months with me in silence, thank you for holding space for me to grow into this new reality, and for supporting our family as we learn what it means to start over. To the rest of you who have been such a godsend of strength to us these past five years, thanks for standing by us as we adjust to life after cancer.

I always wanted to be an outlier, I just never imagined it would be in this way. Here's to more sunsets. Here's to the ultimate mulligan. Here's to hope. Here's to first grade...and beyond.

39 comments:

  1. What an incredible emotional ride I just experienced with you! Unbelievable. I can imagine how many wonderful thoughts and plans your family has now. Enjoy your beautiful life!

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    1. Thank you, Lisa! It has been a rollercoaster, for sure. I am looking forward to many years of advocating for better outcomes for us all.

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  2. What wonderful and astounding news, Jennifer! Here's to first grade, 8th grade, high school, college, grandchildren and more! xoxoxoxoxo

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    1. Now you've got me in tears. Thanks for your support, Claudia. xoxoxo

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  3. Jen. Excuse my French, it certainly deserves to be stronger, but Holy.Shit.

    I want to simultaneously throw up and send you 400 bottles of the best champagne. Holy.Shit.

    I am so happy for you but am holding back tears thinking about the past 54 months. Holy.Shit.

    Jen, we haven't met, I'd love to meet you. We appear, on social media, to share a lot of things in common including both of our doctors (I'm presuming). If you aren't busy today, you know reveling in this victory and also mourning the loss of a community you love and have represented with so much class and grace. I'd love to fill my hydroflask with some Veuve and meet you at the train park and introduce our sons. ☺️

    I'm sorry, congratulations?

    Danya (danyanator)

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    1. I'm looking forward to a mini golf date soon! I won't complain if there's bubbly involved. I can't believe we haven't met before now. XO

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  4. Such amazing, welcome news! I hope you will continue to write, and I know the MBC community will continue to benefit from your strong voice.

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  5. Wow. I think the commenter above said it best. Holy. Shit. This is insane.

    I can't even BEGIN to imagine the emotions you guys are experiencing. DAMNNN. But thank you for sharing this news. Oh what happy times you three have ahead of you... once you get over the shock!!!! I'm over the moon about this. Congratulations, Jen.

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  6. As usual, it sounds as though you have handled this news beautifully Jen. I can not even begin to imagine the number of emotions you must have about this news. I am so thrilled for you, but WOW what a serious mind blowing F*&#K!!!! I can't think of a better word to use, sorry. Just WOW!! Here's to your future <3

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  7. Oh, Jen, how can this be? What a whirlwind of confusion, tragedy and hope. May the sun shine on your shoulders today, and a sweet breeze freshen your face as you recover from this news. <3

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    1. A storm of unreal proportion, to be sure. I love the sunshine & breeze imagery. I'll take that with me in my meditations these next few weeks. Thank you for that. <3

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  8. Wow. oh, wow.
    Here's to getting tall, puberty, first dates, high school graduations -- you know, normal life. This is so amazing.
    Enjoy every minute of this, and never lose your wonder and gratitude for life.

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  9. Oh my, wow. Just amazing. Mind blowing. How do you even process this? Life is truly amazing and miracles do happen. So very happy for you!

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  10. Hi Jen,
    It's astounding news! I'm sure your emotions are still quite jumbled with all there is to process. I am very happy for you, Jen. Thank you for sharing this news with us. So much has changed and yet so much has not because we are all still in this together. If that makes sense. Love and hugs to you. xo

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  11. Thank you for telling all the parts of this. Thank you for showing the process of the next, and the next opinions. That determination to take care of yourself, and to tell us what all sides of those surprises can do to our heads...those are gifts. We appreciate you.

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    1. Thank you for reading, and supporting me even when my truth is scary, or miraculous, or a messy mix of both. I appreciate you, too.

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  12. Jen, this is so much to process. I am glad you have help as you figure it out. I am so excited that you have the opportunity to be there for Quinn in all of the ways you worried you wouldn't! <3

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    1. And that means the world. Thank you for holding my hand through this.

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  14. Wow! Happy rebirth day! I cannot even imagine how you feel but you shared your story so beautifully I am so happy for you. All the best to you and your life away from cancer

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  16. Holy shit! Seriously! Well, my religiosity waxes and wains but I truly believe things happen for a reason. You were an outstanding MBC advocate while you believed you were a metavivor. Now you'll live the best post-metavivor life possible. Just amazing. Holy shit. Congratulations.

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    1. Holy shit is right! Thanks for reaching out!

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  17. I have goosebumps & tears in my eyes all at the same time! Wow! You & your family deserve nothing but the best Jen!! So happy to read this news!

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  18. I have goosebumps & tears in my eyes all at the same time! Wow! You & your family deserve nothing but the best Jen!! So happy to read this news!

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  19. I have been thinking about this all day. I'm a Stage IIIa survivor and active with a group in Portland called Breast Friends. Among other things, I post uplifting/informative content on their Facebook page. May I share a link to your 10/3 blog? I think your story is a powerful reminder that we don't really, truly know what's next...and to just hold on, keep breathing, and see where life takes us (easier said than done, of course). Though I've never had the opportunity to meet you in person, I am grateful for your honesty and advocacy, and I wish you all the best. - Lisa Peters

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    1. You are more than welcome to share the link. Thank you for asking!

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  20. I always said we would dance at Quinn's wedding together--and we will! You have told your story, and what a challenge it has been. I love you and I am forever proud. I know we will continue to do important work together. And it will be nice to meet up places other than the chemo room! xox

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    1. Yes! We'll have to come up with new stomping grounds!! I do miss our time together, but it's also really nice to not be receiving chemo every three weeks. XO

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  21. This is absolutely incredible! It is what all of us dream about but it never happens ... or so I always thought ... until you ... until your story. It seems so trite to say "congratulations!" I'm absolutely awestruck !!!!!!!!! CJ Corneliussen-James 10 years and still metastatic.

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    1. Thank you, CJ! When we met, I was so in awe of your story and hopeful about "oligometastases," and then my story turned into this rare autoimmune disease that I'd only seen on the show "House." Trust me, I am as awestruck as you!! I appreciate your support so very much as I adjust to this new identity. XO

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  22. I am over the moon happy for you!!! What an amazing gift. Blessings to you and your family. Thank you for being such a strong voice for us. To life!!

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  23. I've been following your blog for a while now, and admire your abilkty to share your story in such an honest and heartfelt way. I was a bit nervous reading your blog having noticed your absence and fearing the worst, but whoa! such fantastic news!!!! I shed tears of joy for you and your family and wish you nothing but the best. Cheers!����
    ~ Melissa, a fellow bc survivor.

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  25. Holy crap. Holy crap. I mean, I really can't think of anything to say. Wow.

    You got a life sentence and have been released from prison.

    Sarcoidosis? Even the writers of House couldn't come up with this.

    I'm so thankful for you, and pleased. And greatly shocked but mostly happy. Wow.

    Was there a mistake made? Did you not have a biopsy on your mets? How could this be?

    I'm just stunned and happy for you. One of our own escaped.

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  26. i've been on the lookout for this post since we last spoke at HeV. i am so happy for you!! wishing you all the best

    - Emily Ravenna

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  27. This is wonderful news. I'm so happy for you and your family!

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