all things wonderful

After a pretty epic weekend, I’m not really in the mood to talk about cancer crap. So, today you get a post about all things wonderful, and about a bajillion photos of things that have made me very, very happy as of late. Real quick though – the nerve block didn’t do a whole lot to reduce my headaches, so I’m pretty sure I’ve decided that it’s not worth going through the procedure weekly. I do have a full spinal MRI this Thurs, and a brain MRI this Mon. I’m super nervous, because my symptoms have amped up like crazy over the last week. I am now back to sleeping completely upright on the couch, because if I lie down I am just wrecked by the headaches/nausea. This feels like it does not bode well for my scan results. But we shall see, and I’ll update when I can/feel ready.

For now, I’m going to sit here with my Americano, take a Percocet if needed (these headaches, man, I’m telling you. They suck.), and write about all things joyful.

  • becky and lauren santa cruz panel for blogThe bare screening this weekend went SO well! Evan said he counted 58 people in the audience, which is well above what we were hoping for and felt like a full house. I was stoked. To everyone who came out to support us, and to everyone who donated to METAvivor – I cannot say thank you enough. It meant so much to me to share this film with my home community. And we raised almost $1k!!!! All of which is going straight to METAvivor, which will go straight to stage 4 metastatic breast cancer research. Thank you, thank you, thank you. And while I’m gushing with thank you’s – to April, who organized and moderated the event – I could have never done this without you. You are amazing. To our panelists – good god, I am so impressed by each and every one of you. I mean, I had a suspicion that you’d all be amazing (that’s why we asked you to be a panelist!), but you blew me away. You were each so articulate, each offered such a unique and valuable perspective – you truly did fantastic. I have received SO MUCH positive feedback about each of you. You are all kind of celebrities in Santa Cruz now, be ready :).

 

bare santa cruz panel for blog

 

  • becky ksco for blogSpeaking of bare related awesomeness, my radio interviews were so much fun and went so well. Turns out I really enjoy public speaking. Who knew? Everyone at KSCO has been so kind and helpful and has just made the whole process so enjoyable for me. You can listen to the first interview here (which is the longer one on Walk the Talk, about an hour long) and the second interview here (which is shorter, on Good Morning Monterey Bay – just under 15 minutes).
  • sophie zoe metal crafts for blogIn between all the bare and advocacy work, I seem to have found a better daily rhythm that has really helped me emerge from my emotional funk. Mostly this involves spending as much time with Evan and my family as I can, while paying close attention to when I need to rest and have some quiet/down time. It’s also helped that I’ve found things to keep me occupied when I’m by myself that I really enjoy and that I find calming. Turns out, I’m super into sewing. It’s so meditative! And I can make little gifts for people, which I love. Sophie loves sewing too, which of course makes me happy because we can quietly sit on the couch together and sew heart pillows. It’s so much fun. (I say “quietly” loosely, because she has not yet mastered the art of having a thought and not saying it out loud. But thankfully, I love hearing all of her thoughts, so we have some nice little chats while we sew). Also Anna and I made soap last weekend, which was really fun and another good activity for me. Look at me, getting all Martha Stewart.
  • The freedom that my trike and Uber has afforded me has been game changing. I LOVE MY TRIKE SO MUCH. So does everyone else in Capitola, apparently, because every time I ride it I get at least 5 compliments. People, I’m telling you, put a third wheel on that bike of yours. It’s amazing. And Uber? Not only is it easy and freedom-giving, but I have the most amazing conversations with my drivers. I feel like I’m getting to know my community in such a special way every time I get in the car with someone. I love it.
  • Speaking of the girls, Zoe and Sophie each had a sleep over at our house and it was so much freakin fun. I can’t remember if I already wrote about Zoe’s sleep over, and I’m too lazy to go back through old posts right now to find out, so I apologize if this is repeat. But we went for a bike ride and made fairy gardens and did bedtime yoga and colored and it was just delightful. When she first walked in when Anna dropped her off, she casually strolls in pulling her suitcase behind her and goes “Guess who’s here!!”. It made me guffaw in laughter.
  • A couple weekends later, it was Sophie’s turn. We walked to the park and colored and Sophie taught me how to sew a lavender heart pillow, and I listened to her tell me about everything going on in her life, and I just thought, how lucky am I that this beautiful child wants to tell me about her thoughts and feelings and friendships. It’s such a privilege. She wanted to sleep on the floor next to my bed so that she could sleep in her sleeping bag and it would feel like a “real sleep over,” so throughout the night I kept waking up and peaking over the edge of the bed, because the sight of that lovely little girl all tucked in and dreaming away is a memory that will sustain me throughout any amount of shit that might come my way.
  • zoe kenzie yoga1 for blogOnce a month I teach a free yoga class for women with cancer through a local non-profit (WomenCARE – if you are in Santa Cruz, are a woman who has/has had cancer or are a loved one, I highly recommend them). The last couple months, my class has been canceled (due to Thanksgiving, and then I had a scan on the day of the class the next month), so this month no one showed up for class, which I totally get because I think there was confusion over if it was happening or not. Anyway, so my mom waited with me at the studio for a while to see if anyone showed so that she could give me ride home if the class was a no go. She happened to have Zoe and Kenzie with her, so they sat in the waiting area of the studio. After a few minutes, it became clear that no one was going to show up, so as I packed up Zoe asked if I could teach them some yoga. I, of course, said hell yes. Well minus the “hell,” but that was my sentiment. So I set each of them up with a mat and did a little kid’s class, and oh. my. god. It was so much fun. They both loved it!!!!! They were so engaged and followed along the entire time – a 1 and a 4 year old! And they tried so hard in each pose and remembered the sequences – it was so impressive. I turned each pose into an animal, so we made lots of silly animal noises and pretended to be actual warriors shooting arrows for the standing warrior poses, and they just loved it. kenzie tree pose for blogI wasn’t paying a ton of attention to Kenzie, because she is 1 and I figured she’s just too young to really do it, but then I was teaching Zoe tree pose and I look over and Kenzie is quietly standing there in the most perfect tree pose!! It blew me away. Totally made me want to start teaching a kid’s class. Zoe then announced that she wants to be a yoga teacher when she grows up and that she wants to teach at that gym with me (be still my heart). When we left, Zoe walked out the door holding my rolled up mat, which was the size of her entire little body, and she turns around and peaks her head back in the doorway and goes, “Auntie Becky, that was a beautiful class,” and walks out. I said “Zoe, I love you, you are wonderful,” and she turned around again and says, “we are both wonderful people,” and walks out.
  • kenzie with head bandana for blogKenzie is really starting to grow up and it is so much fun to watch her develop. She now calls Evan “eleven” and talks up a storm. She is such a hilarious little affectionate love bug, and I just can’t wait to keep watching her grow and learn.
  • Yesterday, Evan and I took Cali and Hudson out for the day. We went for a hike along the beach bluffs at Wilder and then wandered down to the beach where there’s a small cave. The kids thought it was so cool. Hudson asked for the flashlight on my phone so that he could inspect the “symbols” on the rocks – ie graffiti. I didn’t see the point in correcting him, so instead let his imagination believe that they were ancient symbols. evan cali hudson in cave for blogCali just sat quietly in Evan’s lap and enjoyed the moment. I stood back a bit and watched my lovely niece snuggled in my husband’s lap, each taking in the mystery and beauty of the cave, while my hilarious nephew inspected gang tags and “symbols” that looked remarkably like penises. When we were finished with the cave, Evan and Cali went to look for sea glass, and Hudson and I played in the sand. He put me in a circle of hot lava/lightening/fire balls and told me that I could only get out if I guessed the password, which started with an H and/or an M and was 5 words long. Needless to say, I was in that circle for quite some time. But no matter, I loved every second of it.

becky evan cali hudson cave wilder for blog

  • One of my old Stanford professors, clients, my mentor in many ways, and all around a very important person in my life, Hans Steiner, has organized an event at Stanford in July which will honor me. How amazing is that? We will show bare and I will likely read a piece that I’ve written. There will be other readers there too, TBA. These events are always great, the caliber of writing is very high, and I always enjoy attending, so I feel extremely honored to be a part of it in this capacity. I will give more info closer to the time, but please mark your calendars – Thursday July 26 at 6:30pm at Stanford (the Humanities Center – Levinthal Hall). Would love to see you all there!

stanford reading poster july profiles in courage

So there’s my wonderful list for today. Things have been hard and shitty in many respects, but in between that crap, alongside it, despite it, I’ve been living this list, too. And it’s a pretty amazing list, if I do say so myself.

capitola sunset low tide for blog

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Radio Interview #2!

A quick post to let everyone know that I’ll be interviewed on the radio again this THURSDAY Feb 1 at 8:45am.

Please tune in to KSCO Good Morning Monterey Bay with Rosemary Chalmers to hear me talk about bare, our upcoming film screening/panel discussion on cancer in young adults, and my experiences with metastatic breast cancer.

And please please please come to our event this Sat!! All details here. It is going to be great, I promise!

Thank you for all your support!

becky radio for fb and blog

a brand new perspective on life and bare – or “why Oprah only got it half right.” (don’t hate me for having the audacity to correct Oprah.)

So, by now, everyone in the universe has seen Oprah’s speech from the Golden Globes, right? The one about the importance of telling your truth and sharing your story?

“Speaking your truth is the most powerful tool we all have,” she told us, and she’s right. Of course she’s right. She’s Oprah.

But I think that’s only half of our power. The other half comes not from speaking, but from listening to each other’s stories, to each other’s truths. And not just listening – but really hearing, consuming, absorbing, and digesting each other’s stories. Reflecting on them and on what they mean to the person in front of us and what they might mean for us. Learning from each other’s truths. Which is how empathy is born.

Yes, having the courage to speak up about our own lives and experiences is the first step. But then, we must stop talking, and listen. And let the truths of others swirl around within us and integrate into our fibers, because that internal tornado of insights and observations and pain and beauty can lead us to places that we never would have been able to go otherwise. That tornado can tear down whatever barriers we have erected between us and the world, and all of a sudden connection is possible. True, meaningful connection – the type that requires really seeing each other. No judgement, no competition. Just sharing, and listening. And when that happens? Everything changes.

Because if we only do the first part – if we only share our own truths and shut ourselves down to hearing the truths of others – it can be just as isolating as if we hadn’t spoken up at all. You may get your voice heard, but will there be anyone there to hear it?

By now, I’m pretty comfortable sharing my story, but that hasn’t always been the case. Yes, now I kind of put everything out there – I write a blog about some pretty personal details of my cancer experience for god’s sake. But I used to struggle to even tell the people I was closest with what was really going on with me. I said “I’m fine” way too often. (In fact, if you ask Evan or anyone else in my family, I still say that way too often, but I’m working on it).

Then I got cancer, and then I got terminal cancer, and all of a sudden I was filled with so much that it became impossible not to talk. If I hadn’t started speaking up, I think I would have exploded. So I did, but at first mostly out of necessity. I needed the people in my life to know that I was not ok, because I don’t think I could have survived all the pain and trauma and fear and disappointment on my own. When I Skyped with Anna and Sophie for the first time, just days after Sophie was born and after I was first diagnosed, and I had to step out of view of the Skype camera because it was not fair for my sister, this beaming new mom who deserved to beam, to see me dissolve in tears – when that happened, I had to let my mom hold me for the first time since getting diagnosed, because I could no longer hold myself up. When Evan came home from work a few days after the mets diagnosis and found me huddled on the floor of our living room, my face soaked from hours of crying over a baby that would never be, I could not pretend that I was ok.

honest quote for blog
(April sent me this quote when I needed to hear it <3)

So I started admitting my truth. That I was not ok, that I was terrified, that I was intensely hurting more often than not, that I needed help. Slowly, and I mean SLOWLY, I began to expand the circle of people that I trusted with this information, until I eventually (like, years after my first diagnosis) put something up on Facebook about it. When I did, I was flooded with messages of support and love. I was floored. I had no idea that simply being honest about my life and my pain would elicit such a response, that I would be held so tenderly by so many people, many of whom I hadn’t spoken to in years.

I also discovered that sharing my truth didn’t always have to mean sharing with another person, that sometimes it could stay between me and my journal, so I began writing more and more, and man did that feel good. Just to get it all out. But then at some point, I did need to be witnessed, so up it went on Facebook again. Not without nerves or fear, but motivated by the understanding that I needed to be seen. And then everything really changed.

becky kerith and actressesThat’s when the bare short film process started, and Kerith and I (ok, mostly if not almost entirely, Kerith) made this beautiful film inspired by my truth. How amazing is that? Even the filmmaking process itself centered around sharing stories and truths, because it required sharing some pretty intimate details of what I had been through with our (amazing) actresses, in order to help them best understand the project. And holy moly, when I got over my nerves and spoke up and shared those details with them? The level of performance that they were able to achieve was unreal. Again – the power of sharing.

AND the film is helping people! Some of the messages that I have received from women who have been through cancer and watched the film have brought me to tears, because they express a level of connection that I am So. Proud. To have helped create. People watched the film and realized that they weren’t alone in their fears and struggles. And that is everything.

When we no longer feel alone, there’s space to feel connected and empowered. Because who can feel brave standing in the darkness all alone? Very few of us. I certainly don’t. But with our friends, with our families, with our people, with resources like bare playing in the backgrounds of our minds – we can stand in that darkness together, and all of a sudden it’s not quite so scary.

All of which motivated me to share my story in even wider contexts, which somehow spiraled into MBC advocacy work – which has turned into a discovery of the power of my voice in an entirely new way, and a desire to use it. What better way to live?

But all of this is only the first half – the first half of how I want to live. The second half requires listening. It requires witnessing, rather than being witnessed.

This hit home for me a few days ago when I was listening to a Terrible, Thanks for Asking podcast episode (which is an incredible podcast that everyone should check out, in my humble opinion). This episode was about a women with a traumatic brain injury (TBI), which I obviously don’t have, but I have had my brain messed with pretty intensely, so at first I skipped the episode, thinking nope, that’s too close to home. I’m gonna cry way too much listening to that.

Up until now, even since getting cancer, I have avoided certain topics like the plague. When a friend recommends a movie, my first question is, but is there any cancer in it? And I typically won’t watch it if the answer is yes. Because it was all too much, too much of a reminder.

So I skipped that TBI podcast episode for a good 2 days. But I kept staring at it in my phone. It was bugging me.

Then I listened. 

And good lord, am I glad that I did. There were so many times listening to this woman describe her life with a TBI when I wanted to yell YES. That’s what it’s like now. Ever since brain surgery. There was a surprising amount that I could relate to, that I think people who haven’t had their brain messed with just don’t get a lot of the time. She talked about the memory loss, and not like, “where did I put my keys” kind of memory loss, but like, “wait what, we just had WHAT conversation a few minutes ago?” type memory loss. She talked about needing to write EVERYTHING down in the hopes of remembering anything. She talked about emotions that get away from her. She talked about the impact all this has had on her family, and feeling like a different person since her accident, and how none of it is her fault, but it still just f-ing sucks.

evan manresa for blogAnd I got it, and I felt understood, and I didn’t feel alone. It didn’t scare me listening to all this, because I’ve already been through it. I’ve already lived it. It just left me feeling…connected.

So I am downloading audiobooks weekly that I’ve wanted to listen to for years but have been too afraid to. I’m listening to all the podcast episodes, and with rapt attention. I’m even listening to an entire series about a woman who lost her husband to cancer – a topic which has, up until now, elicited a MAJOR response in me to run and hide and never think about again. Because I am terrified for Evan, for what he may have to go through one day.

But the truth is that listening to all of this doesn’t make my situation any more real, or the pain that Evan may be facing someday any more likely – it just makes me feel more prepared, less alone, less afraid, even – because instead of squeezing my eyes closed all the time, I’ve started opening them up. And I may not always like what I see, but it’s so much less scary to see than to not. The podcast about the widow – yes she has been through unbelievable pain, but she is also surviving. She is ok, in a way. And Evan will be too.

And, for the record, none of this means that I’m no longer scared – I am terrified, trust me -, or that I don’t cry anymore – still cry a lot – , or that I don’t wish things were different – how could I not? But it means that the way in which I live has shifted. When I started writing years ago, I shifted from living inside my own head to sharing my truth, and that was powerful. Now I’m shifting again to sharing and listening, and that’s actually been even more powerful. Plus not being scared to hear the truths of others or face those topics anymore is so damn freeing.

This new sense of….boldness when it comes to consuming scary material that I used to shy away from – material about cancer and death and infertility and brain injuries and all things cry-worthy – it allows me to feel like I can stare it all in the face instead of having to turn away and sprint for my life. Because you know what? Nothing is worse than living it, and hearing other stories helps me learn and feel connected and brave and like – bring it on. I’ll see your podcast about death and raise you a life about death. And I’ll win for having the courage to listen.

So here is my new hope for bare. I hope that it can be something that others consume in the same way that I consumed that podcast episode about the TBI. I hope that bare can be something that might seem dark and scary at first because it is about cancer, but in reality it brings light to others’ lives, because being aware of hard things in life is way less scary than living in the unknown. Cancer is scary. I’ll give you that. But try looking straight at it. Look straight at me – a terminal patient. Listen to our stories. I think you might be surprised by what you might learn, by how brave you are, by how much even the scariest of stories can better your life.

evan and harriet manresa for blog
(this is Harriet staring life in the face like a badass)
Also please come to our Feb 3 screening of bare + panel discussion on cancer in young adults in Santa Cruz, CA. All info here!

Free Bare Screening and Panel Discussion – Please Join Us!

As most of you know, a few years ago I wrote a story about my friends shaving my head the night before my first chemotherapy infusion. I was 25 years old and had just been diagnosed with stage 3 breast cancer. That night was a major turning point for me. It was the first time that I began to process the weight and magnitude of what I was about to face, of what was happening to me – and shaving my head made me feel fierce, when up until that point, I had been too filled with fear to feel much else.

About a year and a half ago, director Kerith Lemon contacted me and suggested that we (well, she) adapt the story into a short film. I thought about it for about a second before enthusiastically agreeing. A film? um…..YES PLEASE!!!!

The short film, bare, is now made and out in the world, and I couldn’t be prouder of it. Kerith did a phenomenal job capturing the scene, the empowering tone of the night, the beauty in the pain. But she also captured the honesty of that night. The film isn’t a documentary, it is inspired by my story, which to me makes what she achieved even more impressive.

Many of you might have already seen the film online, because we chose to put it up for free so that it could reach and help as many people as possible. But, trust me, it is a WAY different experience to see it on a big screen. SO, come see it on the big screen on Feb 3 in Santa Cruz!! The Feb 3 event will be 2:30pm-3:45pm at the Resource Center for Nonviolence (612 Ocean St, Santa Cruz, California 95060). We will start by screening the film (12 min long), followed by a panel discussion on cancer in young adults, and an audience Q and A. Young adults are an underserved community when it comes to oncology, and we have some amazing panelists to discuss the relevant issues. Panelists include:

becky and lauren head shaveLauren Kutting: one of my real life friends who helped shave my head. In Lauren’s own words: “Becky and I are childhood friends who grew up horse-vaulting together. I’m currently a mother of 3 and business owner (Life in Play). More personally, I’m a BRCA1 gene mutation carrier.”

Rosemary pic for bareRosemary Milich, Licensed Clinical Social Worker has been with the Santa Cruz PAMF Cancer Care Center since October 2012 which was her introduction to Oncology. Before that she worked in an urban hospital setting, with vulnerable seniors and adults with disabilities, providing therapy to adults and children and in a non-profit. Working in oncology has been very special with the patients she meets and the relationships built over the years of care and treatment. Starting a support group for young adults as requested by a patient two years ago was an opportunity she’s forever grateful for as she’s witnessed relationship grow, gallons of tears spill but tons of hours of laughter build bonds.

mia panel pic cropped bareMia Thorn, one of my amazing oncology nurses. “I grew up in Santa Cruz. Studied nursing at Cabrillo, graduated in 2011 with knowledge that I wanted to go straight into Oncology. I started working at Central Coast Oncology and Hematology right out of nursing school. As soon as I helped my first patient I knew nursing was my place in this world, as soon as I sat and spoke with someone that was going through something as challenging as cancer I knew it was my niche. I am awe inspired most days of the week. I see people at their best/worst. People with disease have an amazing ability to prioritize life which is so wonderfully infectious. I learn and relearn on a daily basis to not take life for granted. You can see someone in the hardest of hard places in life say that it could always be worse and pray for their friend getting chemo. It’s absolute magic.”

Lisa Schofield, former METAvivor board member. lisa and becky for bare cropped

Me! Co-writer of and inspiration for bare, writer, and stage 4 breast cancer patient and advocate. I wrote the true story that inspired this film. Together with director Kerith Lemon, I helped adapt my story into this short film in the hopes of creating something empowering for those going through cancer and to help patients feel less alone.

april for bareModerated by April Stearns, founder and editor of WILDFIRE. April has also been helping me organize this event from the get go, and she has been amazing. Can’t thank her enough. This never would have come together without her!

Feb 3, the day of this event, is the day before World Cancer Day – a day dedicated to promoting the awareness, prevention, and treatment of cancer. What better way to honor such a day than to support a metastatic breast cancer fundraiser?

metavivor tasselThe event is free (and please do feel free to come if finances are an issue, we will be more than happy to share the film and event with you regardless), but we will also be asking for donations. All donations will benefit METAvivor, which funds stage 4 metastatic breast cancer research – a severely underfunded subsect of the breast cancer community. Donations can be made by check (to METAvivor), cash, or credit cards at the event.

Please RSVP at SCbarescreening@gmail.com if you know that you plan to be there (or you can just show up – we’ll have space for you!).

We even have beautiful leather tassel keychain giveaways in the METAvivor colors (thanks to Life in Play) for anyone who donates $25 or more.

Santa Cruz bare screening poster FINAL Jan 2018Please join us! It is sure to be a great event and a thought-provoking conversation. Come see the film, have a light beverage, get a cool tassel, and support bare, METAvivor, and all MBC patients.

Please check the FB page (link here) for more information.

Herceptin and Humana

Recently, I had what I consider to be my first real advocacy experience beyond sharing my personal story and experiences with cancer. It’s an important issue that merits sharing, so here’s the scoop.

Over the past few weeks, there has been a serious amount of confusion and concern in the MBC community over the coverage of a drug called Herceptin by the insurance company Humana.

Herceptin has been a miracle drug for many, many people since its FDA approval to treat metastatic breast cancer in 1998. It is listed on the World Health Organization’s list of Essential Medicines. Herceptin is only indicated for those cancers that over-express a protein called human epidermal growth factor receptor 2, or HER2 (ie, cancers that are HER2+).

There is currently no substitute for Herceptin. No generic, no other option. A biosimilar drug, Ogivri, has been developed and received FDA approval in Dec of 2017, but it won’t be available until 2019, so that’s not helpful right now.

According to the Mayo Clinic, about 1 in 5 breast cancers are HER2+. HER2+ cancers tend to be more aggressive, which is scary, BUT being HER2+ now opens up more treatment possibilities, so it’s a double-edged sword. There are a few extremely powerful biotherapies available that target the HER2 receptor – including Herceptin.

OLYMPUS DIGITAL CAMERA
OLYMPUS DIGITAL CAMERA

I am strongly HER2+ (100%, to be exact), and am personally dependent on Herceptin. It has been a somewhat miracle drug for me. I took it for a year in 2011 during my early stage treatment, and I have been on it consistently since Oct of 2014. Every 3 weeks I go in for my IV Herceptin infusion (along with Perjeta), and it keeps me stable. By that I mean that it keeps the cancer at bay, which is HUGE.

I am not alone here. Many, many MBC patients depend on Herceptin in order to survive. In fact, many early stage breast cancer patients depend on Herceptin as well.

Like most other oncology drugs, Herceptin is crazy expensive. On my personal explanation of benefits (I don’t have Humana), each one of my every 3 week infusions costs around $15k. According to Cure Today, in 2016 the annual cost of Herceptin without insurance was $64k.

So. A few weeks ago (I’m not sure exactly when it started), I started seeing floods of borderline panic on social media from the MBC community about Humana potentially no longer covering Herceptin as a preferred drug, which would result in astronomical co-pays. As a non-preferred drug, patients would be responsible for a 20% co-pay of each infusion. That works out to be about $3k, every 3 weeks, if you work from my explanation of benefits. That is nuts, and cost-prohibitive for many people, if not most. It seemed like no one knew exactly what was going on, which only contributed to the panic. People were scared that they would no longer be able to afford their life-saving medication, or be forced into serious financial hardship simply to survive. Neither is acceptable.

The other source of major concern was whether or not this change would set a precedent for other companies and other oncology drugs. That’s a super scary idea.

The story got some press, but it still didn’t seem clear what was happening, and the concern that patients would be left in the lurch without their meds remained.

At this point, I reached out to Patients for Affordable Drugs, which is an amazing non-profit that I have had the great pleasure of being involved with as a Patient Advisor. P4AD works to lower the prices of pharmaceutical drugs (across the board, not just for cancer therapies). As they say, “drugs don’t work if people can’t afford them.” Amazingly, the president and founder of P4AD, David Mitchell, offered to try to help us sort this out.

We started by writing a letter to the CEO of Humana asking for clarification and an explanation as to what specific changes they have made, why, and what they plan to do for patients who simply cannot afford the new 20% co-pay. We sent the letter off, and waited. A few days later, we received a response and an offer for a meeting with Humana to discuss the issue. David went to the meeting in person (it was in DC), and I called in by phone.

The Humana folks listened to my concerns as I described the fears and confusion circulating around the MBC community, and I have to say – I didn’t hold back, and they really did listen and hear me. They then explained the new policy and answered all of our questions. In the end, they actually asked for feedback about how this could have been handled better on their end – which I think we all agree largely comes down to better communication – and they agreed to work on better informing their clients about changes to their policies.

We didn’t come out of the meeting with Herceptin being covered as a preferred drug at $0 co-pay, which of course would have been the ultimate success. But we were heard, we got answers, and I believe we will be seeing some kind of press release soon from Humana to clear up the situation. I don’t believe that advocacy work always happens in big, giant size, mega successful steps. It’s a series of small steps, small changes, emails, meetings, and conversations that often take a lot of effort and energy and don’t look like much at the time, but actually add up to something bigger. This meeting was one step, and it was a good one. It’s a step in the right direction. I’m proud of myself for seeing a problem and taking action. That’s advocacy, right? Well, let’s say that’s my style of advocacy. There are many out there, and many are worthwhile – this is just mine.

I’m also extremely grateful to David and P4AD, as this meeting would never have taken place without him. And, while some will not want to hear this, I am actually grateful that Humana took the time to speak with us, hear us, and have such a candid conversation.

With that said, here is all the technical insurance information that we learned during the meeting, for anyone who is affected by this or interested in learning more.

Herceptin is still covered by Humana under commercial and Medicare plans. Up until 2018, everywhere in the US EXCEPT for south Florida paid a 20% copay for Herceptin (ie, it was a non-preferred drug everywhere except for south Florida up until 2018). South Florida had been paying $0 (it was preferred in that specific market). As of 2018, Humana aligned south Florida with their coverage in the rest of the country, so everyone now has a 20% copay, because it is non-preferred EVERYWHERE now – up until the max out of pocket, which for the vast majority of their clients is $3400 (but could be up to $6700 depending on the plan). No one pays more than $6700 per year. Humana stated that they did provide an annual notice of change/evidence of coverage to their clients that talked about these changes, but readily admitted that those documents are hard to understand for most people and that they can improve their communication. They assured us that this change to Herceptin in South Florida is not predictive of any future changes to any other drugs, in any other markets.

So now we wait to see if Humana comes out with any kind of statement to address the issue.

I know that some won’t be happy with this outcome, and some won’t be happy with me or with this post. I’ve already been told by some that I didn’t do enough or didn’t approach this correctly, in their opinion. I hear that what everyone really wants is for Herceptin to be covered as a preferred drug. I want that too. I don’t blame anyone for wanting more than a conversation. But this is where we are at right now. Small steps, meetings, conversations – it all adds up. We keep on keeping on, we show gratitude for those who help, we keep our larger goal in mind, but prepare ourselves to take on lots of small, hard steps – and at some point, we’ll see the change.

Please tune in for my first radio interview Jan 18th!

I have a local radio interview coming up in Santa Cruz that I couldn’t be more excited about, and I would SO LOVE for any/all of you to tune in! I’ve never been on the radio before! It is of course a little bit intimidating, but I’m super excited. We’ll talk about my experiences with cancer, bare, and the upcoming bare screening/panel. My hope is that by sharing my story, we’ll get more info about MBC out there, which will help patients and maybe, possibly, inspire donations to stage 4 research.

Santa Cruz bare screening poster FINAL Jan 2018

But donations aside, I strongly believe that the more we share our stories, the more empathy and understanding we create, which benefits everyone. Once I realized this, I couldn’t not share my story. You’ve seen bits and pieces of it here, in bare, in other pieces that I’ve written, and on the podcasts – but this interview will be another level. I’m going to do my absolute best to share honestly, deeply – no holding back.

The show, Walk the Talk KSCO, will air live this week on Jan 18th 1-2pm PT. Please tune in! And click here for a sneak peak of my very first radio commercial ever :).

KSCO image

I’ll also have a second radio interview on Feb 1 at 8:45am, KSCO Good Morning Monterey Bay with Rosemary Chalmers, but I’ll post more about that later.

If you can’t tune in, I’ll post the link to the interview after it has aired. And if you can’t listen at all, please donate to METAvivor or Cancer Couch to help me and so many other patients like me. In the end, that’s what this is all about.

Thank you ❤

Some practical tips for the patient like me (plus some cool events!!)

And no, there will be no mention of kale or coffee enemas here. This is more of a practical, day-to-day, what do I do with myself when I’m physically impaired and living with MBC list.

It’s just that, as anyone who read my last post knows, things have been pretty hard lately, so I wanted to jot down some things that have been helping me get through this, in case these ideas can help anyone else as well. I don’t know that anything in here is really profound or ground breaking, but some of these tips have taken me a lot of trial and error to discover, so I figured why go through that yourself if you don’t have to? Plus, these ideas can be applied to all different types of situations involving struggle and hardship. We all need coping strategies.

Before I get into my list, I did go back on the steroids, which have helped improve my quality of life. Now my docs want me back off the steroids. Ugh. It’s actually more reasonable than it sounds, because steroids wreak havoc on your body in all kinds of bad ways, but it’s also really frustrating to finally feel a bit better only to be told that we now need to take away the thing making me feel better. Next week I am getting an occipital nerve block at Stanford, which means that they will numb up one of the nerves in my head in case it got irritated and angry post-surgery/radiation, and that irritation is contributing to my headaches. If that’s part of the problem, and the nerve block works, my headaches should improve. Fingers crossed. We are also messing with a whole bunch of my meds, which makes me super nervous…..

In the meantime, I still don’t feel very well, so here’s a sample of how I’ve been coping/spending my days:

  1. Audiobooks/podcasts. Because I can’t really comfortably read or watch TV anymore (too headachy), I have gotten a little bit obsessed with audiobooks and podcasts. I recently discovered that I can download free audiobooks through the library app (thank you friends for all those tips on FB), and pretty much all podcasts are free. I listen to something, like, all the time – I even fall asleep listening to something most nights. It really helps me with my anxiety to have conversation or soothing reading in my ears, even if it’s just light background to whatever else I’m doing. I am currently working my way through the New York Times Best Seller list of animal memoirs, and they are awesome. Soul of an Octopus, Following Atticus, The Shepherd’s Life, H is for Hawk – spectacular books.
  2. Coloring. Have you ever tried to sit at home and just listen to an audiobook or a podcast without doing anything with your hands? It’s pretty awkward. Solution – color. And then tear the pages out when you are done and mail them to your nieces. They will love you forever for the pretty pictures and the exciting snail mail.
  3. Triking. becky trikeThis little beauty has been one of the best purchases that we have made (and it was surprisingly affordable for anyone interested). It’s allowed me to be able to get out and about without the fear of falling/losing my balance. I still stay local because I don’t have the energy or muscle mass for any kind of distance, but with the basket on the back, it means I can actually do things like grocery shopping on my own again! The freedom, you guys. It’s everything. And I am DETERMINED to train Harriet to sit in that basket.
  4. Connection. This should arguably be number 1 on the list. When things get hard, I tend to bury away inside myself. harriet blanketsI hide in my bed, in my audiobooks, in my head, in myself. I feel a little (/a lot) like Harriet here. I withdraw from everyone, including Evan. And this does no good. Because while hiding can help dull the pain, it also deprives me of connection. Of love. And that love is not only fortifying, but it’s what ultimately makes all of this crap worthwhile. It’s a balance, though, because the reality is that I am not always up for full hang outs – my brain and energy levels just can’t handle it much of the time. That said, there are other ways to connect. I can write cards and letters. I can send little gifts in the mail. I can text. I can lay in bed with Evan instead of by myself. This giving and receiving, even in the smallest ways, has the power to completely turn my days around.
  5. Time with family. I recently had a conversation with my oncologist in which she told me that her hope for me is that, maybe, best case scenario, I live another 5-10 years. Let that sink in for a minute. The ultimate best case scenario here is that I might make it to my 40’s. And there is a very good chance that I won’t, especially after the year of brain mets and neurology issues that I’ve had. So I’m left with a really intense feeling that my time is very, very precious, that I must be oh so deliberate about how I spend it, and that really, all I want to do is be with my husband and family and friends. That’s it. So that’s what I’ve been doing, as much as I can. And I plan to continue that game plan for as long as I’m around.
  6. Crafting for my nieces.

    I am embarrassingly behind on all things technology, so I only just discovered Pinterest. Is everyone aware of how many awesome kids crafts there are on Pinterest?! Cause there are a ton. And when I’m lacking for something to do, silly kids crafts are kind of perfect. Think dream catchers, fairy gardens, designing big letters to spell out the girls’ names, and of course the troll hair. Not only are the crafts surprisingly entertaining to make, but the joy on those little girls’ faces when I show up at their house in my Uber with my latest project for them is priceless. Eventually I’d love to get to the point where I can make stuff that doesn’t actually look like it was made by a small child, but whatever, I’m learning to find peace in my imperfections.

  7. Noise canceling headphones. This is my latest purchase, and I’m going to go ahead and say it’s genius for someone with headaches like mine. It means that I can now sit next to Evan in the evenings while he watches something on TV instead of having to hide in the bedroom by myself, because the headphones allow me to cut out the sound of the TV if my brain has had enough for the day. Just being able to sit next to him in the evenings again is huge. I also have trouble focusing when there is a lot of background noise or competing conversations (ever since brain surgery), so the headphones give me the ability to eliminate any unnecessary noise and just listen to my audiobook/podcast. Plus, it’s pretty much the best idea for a somewhat introverted person who has to spend way too much time in the chemo room, which can get loud.
  8. Finding a purpose. I am a driven person by nature, and it is really hard for me to feel purposeless, which I often do as a professional cancer patient. Goals fuel me. Accomplishments put a pep in my step. But I can no longer work, I can no longer spend much time in front of the computer, I spend most of my time at various doctors’ offices and/or recovering, and I have trouble finding fulfillment in such an existence. I am constantly conflicted by this feeling, because also – if I don’t have all that long to live, why do I care about accomplishments? They don’t matter. I should be focusing on spending time with my family. See #5 above. The thing is, at a day to day level, feeling like my existence matters is important. Which is why I’m so grateful to have become connected with the MBC advocacy world, because that is important, fulfilling work. It gives me an outlet where I can direct this energy. It’s taking some time to find my place in this world, but I’m getting there. I plan to write more. I do whatever I can for METAvivor and other non-profits that support stage 4 breast cancer, like Cancer Couch. I am working with Patients for Affordable Drugs to help make treatment more accessible for patients. And let’s not forget bare and all of the fun/publicity that goes along with that, which is a more creative but equally fulfilling way to work on MBC awareness. I love all of this work. My personal downfall can be ending each day constantly feeling like I haven’t done enough, so I’m working on really, truly, accepting that even if I send a couple of emails, or organize one bare interview – that’s a successful day.
  9. Speaking of finding purpose, I have two local radio interviews coming up in Santa Cruz that I couldn’t be more excited about. I’ve never been on the radio before! I’ll be on Walk the Talk KSCO this week on Jan 18th 1-2pm PT. We’ll talk about my experiences with cancer, bare, and the upcoming bare screening/panel. Please tune in! And click here for a sneak peak of my very first radio commercial ever :). The second interview will be on Jan 31 at 8:45am, KSCO Good Morning Monterey Bay with Rosemary Chalmers.
  10. AND – We have a local bare screening coming up! PLEASE JOIN US! On Feb 3rd (the day before World Cancer Day) 2:30pm-3:45pm we will be having a FREE screening of bare (12 min) at the Resource Center for Nonviolence (612 Ocean St, Santa Cruz, California 95060). We will follow the screening with a panel discussion on cancer in young adults/audience Q & A. All donations will benefit METAvivor (stage 4 breast cancer research). Donations can be made by check (to METAvivor), cash, or credit cards at the event. Please RSVP at SCbarescreening@gmail.com. Please check the FB page (link above) for more information and for information on our wonderful panelists. It will be a great event and a thought-provoking conversation, please join us! Santa Cruz bare screening poster FINAL Jan 2018
  11. Short walks. Once again, thank you steroids. Since going back on Dex I have been able to go back to taking Harriet for little walks around the neighborhood, which is so important for both of us. Even if I only get around the block, it gets me out in the sunshine, reminds me that there is life out there, and it gets my body moving.
  12. My anti-gravity chair. When even going around the block is too much, I can lay on my porch in my anti-gravity chair and close my eyes, listen to an audiobook – just be outside. It’s so much more comfortable than a normal patio chair and was totally worth the money.
  13. YogaGlo.becky yoga bridge A good friend introduced me to an awesome site called YogaGlo, that I now love. You sign up for a monthly subscription and can then take as many online yoga classes as you want, structuring them however you want. This morning I did a 20 minute, gentle Hatha class in my living room, and it was perfect. Going to class is just too much for me most days, but I don’t want to lose yoga completely. YogaGlo has kept it in my life.
  14. Redefining freedom. For me, freedom used to mean driving wherever and whenever I wanted/needed. When I lost that ability, I felt trapped and dependent on everyone around me. I hate that feeling. And to some degree, in some situations, that is still the case. But I can also walk to Capitola Village or to Whole Foods (thank you steroids); I can trike a little farther a field; and I can Uber pretty much anywhere I want to. I still have freedom, it just looks completely different from what I thought freedom as a 32-year-old adult looked like. Once I realized this, I was able to start spending less time mourning the loss of my old definition of freedom and enjoying triking down the road, ringing my new red bike bell, knowing that I could be out of the house for as long as I wanted. Freedom.
  15. becky and evan j treeAccepting that this list is vastly different than it would have been a year or two ago, and it is likely to continue to evolve. Had I made this list before brain mets, it would have inevitably included climbing, hiking, biking, journaling, working, road trips, camping, taking lots of yoga classes, and teaching yoga. Had I made this list before mets, it would have included even more adventure and activity and going big. For a long time, the way this list has changed over time made me really, really sad – and sometimes it still does. There is a life that I have lost that merits mourning. But that does not mean that my life is over, not yet. It has changed, and changed drastically, yes. I also worry about losing common ground with Evan, because he still enjoys all the activities that I can no longer do. But in this situation, happiness has become more about being, and less about doing. The more I can accept this, the better my life will be.

While there are days when the pain simply wins and I must retreat, into myself, into my bedroom – and that’s ok – I am also working on the idea that I refuse to survive this beast of MBC each day only to miss out on the things that make this life worth living. So I do my best to get up, go outside, kiss my girls, lay with Evan and let him read to me.

In short, I do my best to live as best I can – fully, purposefully, with love.