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.

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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.

 

Happiness via Osmosis

The past few weeks have been, well, I can’t quite come up with an adjective that really describes how I’ve been feeling, so I’ll just give you a few examples of what’s been going on in the hopes that you can imagine the state I have been in emotionally. I feel really weird posting a complainy list of everything that is wrong, but I had a weird experience lately where I heard through the grapevine that I’ve been doing well. Not so much. It’s my own fault, really, because when people read my blog and the last entry is all about how things are improving, and then I go silent, it’s fair for people to assume that I’m continuing to improve. The thing is that when things start to downturn, I tend to hibernate and don’t have the energy to write. So I end up leaving everyone who reads this blog with the false impression that things are going well. Here’s the reality:

  • My headaches have amped up, like whoa. Unfortunately the only pain killers that work make me sleepy, so it can become difficult to function. Frustrating, to say the least.
  • My fatigue has become insane. I generally sleep about 14 hours a night and still need an afternoon nap.
  • I wake up every morning with double vision and so wobbly that I sometimes have to hold on to a wall to walk to the kitchen. I have to look at my phone with one eye closed just to see the screen until it clears (which is does, after a few minutes of standing upright).
  • The nausea is back, and with a vengeance.
  • I can get confused during the simplest of conversations.
  • My memory has become so impaired that I forget entire conversations minutes after they occur. I have to write everything down to remember anything. The other day, I straight up forgot my own address. This is one of the most unnerving feelings – that I can’t trust myself.
  • I drop things. And I’m not talking like, I’m a little bit clumsy now, and then, I’m talking like, my hands just let go of whatever I’m holding on to with no warning.
  • I often cannot find the right words for things. I either draw a complete blank and can’t communicate what I’m trying to say, or I say something similar to what I mean, but that is clearly the wrong word – like I say “up level” instead of “upstairs.”
  • Some days, typing is difficult. It’s like there is a disconnect between my brain and my hands, and what I mean to type comes out as almost gibberish on the screen.
  • I can’t drive much and am weary of walking too far on my own. This loss of independence is a tough one for me to accept.
  • Just to give you an idea of what it’s really like to be an MBC patient: I typically have at least one doctor’s appointment a day. I take 22 pills a day; get 3 IV infusions, each every 3 weeks; and 2 monthly injections. This is tiring, to say the least.

All of this seriously affects my ability to get anything done, which is beyond frustrating because I finally have work to do that I care a ton about. I have bare promotion to work on, including articles and interviews; I’m working on organizing a bare screening/panel discussion in Santa Cruz with April (which will be a fundraiser for METAvivor – Feb 3, more info to come but put it on your calendar!); and I have been invited to be a MBC patient advocate and advisor for Patients for Affordable Drugs, which is a ridiculously amazing opportunity that I couldn’t be more excited about. I love all of this work and desperately want to be doing it. BUT I NEED ENERGY AND A CLEAR HEAD TO DO ANY OF THIS!!!! I do my best to fight through and get it all done. Some days I can, some days I can’t.

So when I try to sum up how I’m feeling or how things are going in a word or sentence, nothing really seems adequate. No single adjective truly captures how often tears have been filling the bottom rim of my sunglasses, which I’ve taken to wearing every time I leave the house in an effort to hide my sadness from the world. I cry out of fear, for my seemingly deteriorating quality of life, because I feel so overwhelmed, because I am so tired of it all.

I’ve seen doc after doc, done test after test (including my 7th spinal tap to test for lepto mets), but no explanation thus far. It could all be due to the radiation necrosis (radiation last year caused bits of my brain to die and become necrotic. It’s getting better, but could still be causing trouble). I’m taking steroids again, so fingers crossed that helps and I’ll get back to my daily walks and regular writing soon. It’d be the best Christmas present in the world.

I am writing this not because I want sympathy, not because I need to complain, but simply because this is the truth. That’s all I can do – tell the truth. In fact, I’m really nervous about posting this one, because it feels really….raw. Do I really want EVERYONE to know that this is how I’ve been feeling? But here’s the thing – I think the world could use a bit more honesty – even if it’s not pretty -, a bit less false positivity. Some of my posts are joyful. Some are less so. But they are all true.

If I have seen you in the past few weeks, or actually this probably applies to much longer than the past few weeks – you might be confused by this post. I’m guessing that I seemed fine when you saw me. Here’s the thing. 1) I do have better days. You may have seen me on a better day when I had more energy and genuinely felt happier. 2) There is often a large discrepancy between how I feel and how I look. 3) On not so good days, I am really, really good at hiding how crappy and/or sad I feel. If you ask me how I feel, I may say something vague like “fine,” because sometimes I just want to hang out without cancer. 4) I save up all my energy for our hang out, often taking naps beforehand and strategically timing pain pills in preparation. Then I spend days recovering from the hang out. It’s totally worth it, because I really want to see my friends and I love hanging out with everyone, I’m just trying to explain how I can appear one way and then write something that sounds very different.

So my day-to-day is kind of crappy right now, and the docs don’t have many solutions. Hence all the tears. But, I am hopeful that the steroids could really improve my quality of life.

I do also still have good days. Days when the beauty of this life slowly chips away at the concrete lump of sadness that I have been dragging around.

One night I watched Zoe do her “fancy dance,” which basically consisted of her jumping around in circles for about 10 minutes, and it made me smile. Then Kenzie yelled, “Watch, auntie” and tried to imitate Zoe’s fancy dance, and I couldn’t help but giggle as she threw her arms up in the air and twirled around in circles, stumbling and lurching, still finding her coordination. On the way home, Sophie gently rested her head on my shoulder, and a piece of my sadness fell to the floor.

butterfly for blogOne weekend I went to a monarch butterfly sanctuary. I stood there while those delicate beings quietly floated around me, and I thought, there it is. This is what I need to make my way through this thing. It doesn’t eliminate the pain, but it helps me endure it.

I still keep my sunglasses on in public, only taking them off at home to let the tears fall. But on a good day, the loveliness of twirling nieces and fluttering butterflies filters in and softens the sadness just a bit.

A sort of happiness via osmosis, type of thing.

 

 

The Cancer Couch & METAvivor

Last week I had a really interesting phone call with a really interesting woman. Her name is Rebecca, and she was diagnosed with stage 3c breast cancer in September of 2015. As of September of 2017, Rebecca became a stage 4 metastatic breast cancer (MBC) patient.

The Cancer Couch Foundation picBut her diagnosis is not what makes her so interesting. It’s her reaction to being diagnosed with breast cancer that blew me away: she started her own non-profit (after her stage 3 diagnosis) to raise funds for stage 4 metastatic breast cancer research. It’s called The Cancer Couch Foundation. I know as well as anyone how much energy and fortitude it takes just to get through a breast cancer diagnosis and all that it entails, and to found a non-profit on top of going through all that? It’s pretty remarkable.

I found myself on the phone with Rebecca because she wrote up a piece about my story and bare. I’ve had a few of these conversations over the past couple of months with various magazines and websites, and typically I chat with the writer/reporter for a maximum of a half hour. Rebecca and I talked for about an hour. She is a delightful person – generous, kind, warm, and driven to make shit happen. She’s not the type of person to come up with a good idea and then sit on it. And honestly? Being diagnosed with breast cancer would have been a pretty understandable reason to sit on a good idea for a while. But not Rebecca. She came up with a good idea and then turned it into a mega, hugely successful non-profit – while going through cancer treatment.

Rebecca decided to focus on MBC with her non-profit because for a short while when she was first diagnosed (long before receiving her actual stage 4 diagnosis), she lived as an MBC patient. It’s kind of confusing. Basically, when she was first diagnosed with breast cancer, her doctors thought that it had spread to her bones, and they told her that she was stage 4. A few weeks later, she found out that this was a mistake, and they changed her staging to stage 3. Can you imagine how much that would mess with your mind? So, for a few weeks, she lived with a terminal diagnosis. Then, the doctors handed her life back to her. But understanding that you are going to die, in a very real way, is not something that you just forget when a clinic staff member erases “stage 4” and instead writes “stage 3” in your chart.

Rebecca’s response to this experience, even after learning that she was actually stage 3, was to found The Cancer Couch to raise awareness and funds for stage 4 metastatic breast cancer. Like I said, she’s a woman who gets shit done. All it took was a few weeks of living with a stage 4 diagnosis, and she decided to do whatever she could to help MBC patients. And what she has done to help is HUGE.

The Cancer Couch is another particularly impressive non-profit, along with METAvivor. Both are volunteer-run, and both dedicate 100% of donations and event proceeds to stage 4 MBC research (thanks to private funding, grants, and/or corporate sponsors).

All Cancer Couch donations are matched – so every penny of every donation is doubled. This model has been amazingly effective. This year, The Cancer Couch Foundation, with contributions from Twisted Pink and Hope Scarves (the three non-profits have joined forces to create the MBC Collective), has put 1.2 million dollars into MBC research. $1.2 MILLION!!!!!!!!!

At this point some of you may be wondering if I’ve switched my support from METAvivor to The Cancer Couch. Simply put – no, I have not. I support both. I believe that both are fantastic organizations that do promising work for MBC, and both are worthy of our support. They do slightly different work, which I think highlights the need to support both non-profits.

The Cancer Couch funds scientists studying MBC who are established in the field and work at Memorial Sloan Kettering Cancer Center and Dana-Farber Cancer Institute. The research being funded at Memorial Sloan focuses on reducing drug resistance to cancer therapies. Dana-Farber’s research focuses on improving our understanding of estrogen positive MBC in two ways: 1) studying how different immunotherapy approaches can benefit different patients (like those who are estrogen positive vs estrogen negative) and 2) studying HER2 mutations in estrogen positive breast cancer, with the goal of better identifying effective therapies for estrogen positive patients with HER2 mutations.

If your eyes glazed over with that last paragraph, essentially different breast cancers have different receptors, and that affects prognosis and treatment. When I was first diagnosed, I was “triple positive,” which means that my tumor had all 3 known receptors – my cancer was estrogen positive (fueled by estrogen); progesterone positive (fueled by progesterone); and HER2 positive (fueled by human epidermal growth factor). The research at Dana-Farber is studying breast cancer that is fueled by estrogen.

metavivor ribbonMETAvivor, on the other hand, selects scientists through a peer-review process whose novel MBC research shows promise in improving the quality of life of those with MBC and in changing MBC from a terminal disease to a chronic one (aka, something that a patient might have to live with, but won’t die from). When a scientist is selected by METAvivor, they are awarded a research grant. By getting the funding started on these projects, METAvivor helps these researchers produce initial findings and attract larger grants. These are solid projects (on all MBC sub-types) that have passed a rigorous peer-reviewed process, which includes being reviewed by a group of research investigator peers, patient advocates, plus a second review by career metastasis researchers/oncologists. This is currently the most rigorous MBC grant funding process.

METAvivor funds all different types of MBC research, on different MBC topics, conducted by scientists from different institutions – as long as their research is focused on MBC and passes METAvivor’s thorough peer-review process. Examples of the work done by METAvivor grant recipients include: “A novel treatment for breast cancer liver metastases,” “Sensitizing bone metastasis to chemotherapy and radiotherapy,” and “Disrupting metabolic adaptations in breast-to-brain metastases.”

Both METAvivor and The Cancer Couch focus exclusively on stage 4 metastatic breast cancer research and both dedicate 100% of donations/proceeds to research. However, they fund different types of MBC research and approach funding this research in different ways. Both types of research are worthwhile and badly needed, and both non-profits work towards the same ultimate goal – finding better treatments for MBC patients so that we aren’t just left to die.

Honestly, The Cancer Couch hasn’t been on my radar up until now, but it definitely is now that I’ve learned more about it. Between the work that The Cancer Couch is doing and that of METAvivor, I have real hope that things could improve for MBC patients.

I don’t think that the key to improving the situation for MBC patients is going to come from one approach, or from one type of research funded by one non-profit. We need to attack this disease from multiple angles. We need a lot of smart people putting their heads together. We need both METAvivor and The Cancer Couch (and many other non-profits/organizations that aren’t mentioned here).

I, for one, can’t wait to see what game-changing therapies are produced as a result of the research funded by these two non-profits.

Please consider donating to METAvivor and/or The Cancer Couch. Your donation will help fund crucial research that MBC patients like me depend on.

Thank you!

Not out of the woods, but some good news!

FINALLY!!! I have some good news to share. Evan and I spent the day at Stanford last week on Monday, where we saw my second opinion oncologist and my neurosurgeon. Both are fantastic. We are so lucky to have these world class doctors within a short drive from home.

First up was oncology to discuss my bones. My scans have all been super confusing lately – my sternum (where I’ve had cancer before) is lighting up on nuclear bone scans, but not on PET/CT scans, and no one is really sure what that means. This oncologist said that it’s possible that my sternum is lighting up due to a trauma (I’ve had a sternum fracture before because the cancer weakened the bone), or that it’s residual scar from cancer or that fracture. Basically – we can’t rule out tumor, but it is also entirely possible that it isn’t cancer. So, for now, we are not going to change my systemic treatments, which is really good news. If a scan shows more conclusive evidence for tumor in the future, then we’ll have to switch up therapies. For now, though, I can stick with herceptin and perjeta. Phew.

Then we moved on to neurosurgery to discuss my latest brain MRI. As most know, I currently have two spots lighting up on my brain MRIs, and we aren’t sure if they are radiation necrosis or tumors. Radiation necrosis is essentially dead brain tissue that got damaged as a result of the brain radiation that I had back in Dec/Jan. About 5% of people end up with radiation necrosis after brain radiation. It can be dangerous, because even though it’s not tumor, it can grow over time and it’s still something in my brain that shouldn’t be there. So, it causes me symptoms very similar to brain tumors, and if it grows, then I’ll need surgery to remove the necrosis. It’s also possible to have some tumor cells mixed in with necrosis, and there’s really no way to know if that’s the case short of doing surgery and testing the tissue. Ever since these spots starting lighting up, I’ve been on Avastin, which is an IV drug that I get every 3 weeks to treat necrosis.

This MRI was a big deal, because it was the first one I’ve had since I started Avastin. If it showed improvement, that would suggest necrosis vs tumor. If the spots were bigger, we wouldn’t know if they were necrosis or tumor, but either way I would have needed surgery – a big, terrifying, risky brain surgery.

So here’s the really good news. The brain MRI showed IMPROVEMENT!!!!! Which suggests that the two spots are necrosis, and also suggests that the Avastin is working. When they told me this, I burst into tears. That was unexpected for me. I mean, I knew that I was scared, but I did not think I would cry uncontrollably with happy tears. It was just such a relief. ALL I want is to not have brain tumors. That’s it. So to hear that they think that’s probably the case…I just lost it.

It’s not for sure, but we are up to about an 85% chance that this is necrosis vs tumor.

Unfortunately, nothing is ever just straight forward. I am having some side effects from the Avastin which require that we cut my dose in half, which makes me super nervous. Avastin can cause bleeding, so I’m getting lots of nose bleeds and things like that. Nose bleeds themselves aren’t dangerous, but they indicate that the Avastin is changing my body’s bleeding tendencies, and possibly healing capabilities, so we need to take it seriously. I’m nervous that cutting my dose in half will reduce the efficacy of the drug, but there’s not much I can do about it. I just have to hope that it continues to work. If any MRI in the future shows that the spots are growing, I’m still looking at surgery. But for now, I have a reprieve.

Then I had about two days to celebrate before ending up in the ER. Evan and I were hanging out in the evening – I was coloring and listening to a podcast, and then my brain just shut down. Like, it just went bye bye for a while. It’s not the first time this has happened, but this was the worst. I could feel the fog coming on, and when it happens, it feels like I just need to shake it off, but my brain gets so lost in it, and I just can’t find my way out. I couldn’t figure out how to tell Evan that something was wrong, so I just sat there, paralyzed. Eventually he saw that something was off, and then I couldn’t figure out how to answer his questions, couldn’t focus on him, everything was happening in slow motion. It was like my brain was stuck in concrete. Then my head started really hurting, I got nauseous, and I got SO TIRED. Like, just couldn’t stay awake tired, and it came on all of a sudden. Evan could see that something was very wrong so he put me in the car and drove me to the ER. My head CT was fine, no bleeding, blood work was fine, and eventually my mental state cleared up, so they sent me home with instructions to call my neurologist the next day for a full seizure work up. Seizures are also a potential side effect from the brain radiation that I had, so it’s entirely possible that that’s what happened. I see my neurologist next week, so we’ll see what he says. It was all really scary.

More than anything, it was a really upsetting reminder that despite good news, there’s clearly still something very wrong with my brain. That’s hard to deal with.

becky nisene yogaIt’s not that I thought I was out of the woods with that MRI, but I thought I was getting there. And then the trip to the ER was a painful reminder that I am still very much in the middle of the forest. But, as my therapist wisely said, the reality is that I live in the woods, and I always will. I need to just accept this – something that is far easier said than done. Living in the woods means that I live with constant uncertainty, instability, and threat. I can never completely relax. And it can get really dark in there. The fight that I am in will never end, nor will all that accompanies that fight.

But if I can find a place even close to acceptance, if I can stop raging against this truth, I think I’ll be able to find some peace despite all the unknowns and challenges. Plus, the woods can actually be a really beautiful place. I love deeper and stronger because I am sick. I’ve had some amazing opportunities come my way because of my diagnosis.

When the sunlight filters through the trees and hits the branches just right, when it has just rained and the whole forest smells fresh and alive, when you feel the chill in the air on your cheeks – the woods become a place filled with beauty and life.

Cancer will never be a “gift” to me; I will never be someone who says I am grateful that it happened to me. It has caused me and my family far too much pain to say any of that. But it did happen, and here I am living with it. So, now I live in the woods, where some days are dark and scary and others are just beautiful.

If you’d like to help me and all MBC patients, please donate to METAvivor, a non-profit that dedicates 100% of donations to stage 4 breast cancer research.

To view the short film, bare, that I co-wrote and that is based on my story, click here!