I know I haven’t posted here in far too long, and I promise that a full update is on its way. There is so much to catch up on! But, for now, I wanted to at least let everyone know about a really special event coming up in Redwood City, CA, May 13th 7pm. I would absolutely love to see any and all who are in the area and can make it!
A fellow MBC patient, advocate, and filmmaker, Trish Russo, and the bare team are hosting a co-screening of our films. As many already know, bare is a short film co-written by Kerith Lemon and myself, directed by Kerith, and inspired by the true story that I wrote about how my friends helped me cope with my first stage 3 breast cancer diagnosis at age 25 by helping me shave my head. Our goal with bare was to create something empowering for the breast cancer community and to help all those affected by the illness to feel less alone.
Trish’s film, Love Always, Mom, is an award-winning new feature documentary about her experience building a family via surrogacy after her stage 4 breast cancer diagnosis. The film is a rare, honest glimpse into the reality of what it means to have MBC at such a young age, the unique challenges that we face as younger patients, and how we learn to cope and find joy despite it all.
Young men and women with MBC are a largely underserved population that are too often left without adequate resources to help them face the many challenges that living with a terminal illness, during what was supposed to be the prime of our lives, present. Both films address different aspects of a young diagnosis and bring to light important issues that need more attention – peer support, redefining one’s identity, infertility, family planning – the list goes on. Trish and I, along with her surrogate and her surrogate’s husband, will participate in a panel discussion after the films. There will also be a Q and A, during which you’ll have a chance to ask us about anything that the films may have brought up. It should be a wonderful, insightful evening, and I highly encourage all to attend.
Please come show your support and help fill the theater, so that we can clearly demonstrate just how many people do care about MBC. That’s the first step towards correcting the current imbalance in research funding that by and large leaves those of us with MBC feeling, well, forgotten and left to die, to put it frankly.
Funding MBC research is the only way to take death off of the table for ALL breast cancer patients, no matter the stage.
I posted most of this last year, but it’s important enough to reiterate. I know it’s long, but please stick with me. As of tomorrow, Oct 1, it will be breast cancer awareness month. I have a lot of mixed feelings about this. For one, I know some people with other types of cancers who would give anything for a dedicated month during which people made an effort to be aware of what they are going through and learn more about their disease. In that respect, I’m grateful.
Here’s the problem that I see. I understand that it is helpful in a PR/branding kind of way to associate a symbol with a cause so that the general public has something to easily use and hold up to show their support for that cause. In this case, the symbol for the cause is the color pink. It becomes an issue, however, when the symbol itself overshadows the cause, which is what I see happening with breast cancer. The cause – stopping people from dying from breast cancer – is getting forgotten amidst all the pink (the symbol). Many companies, too many, make pink products and organize pink events under the guise of supporting breast cancer, when in reality little – if any – of those profits actually go towards BC research or support services. People then buy these products and go to those events thinking that they are helping the cause, often with the best of intentions, when in reality their good intentions are being taken advantage of.
October shouldn’t be about the symbol – pink – it should be about learning the actual facts about breast cancer, fundraising/supporting breast cancer research, remembering that people are dying from this, and learning more about what those of us with breast cancer actually go through – and all of that should include metastatic stage 4 breast cancer.
If the color pink could effectively be used as a symbol of all of that, I’d be all for it. I actually appreciate that we have a month dedicated to breast cancer, but let’s please make that month more about the disease and patients and less about selling all things pink when the profits don’t support the cause.
Also, a word about “awareness.” There’s quite a bit of backlash in the BC community about this word, because people argue that everyone is already aware of breast cancer, and therefore these awareness campaigns are a waste of time and money. I think that maybe, the words “awareness” and “education” are getting mixed up. Yes, we are aware that breast cancer exists, but most are not truly educated about the disease. They are not aware that an estimated 30% of early stages will metastasize, that breast cancer can present in many, many different ways and at all ages (and in men), that the average lifespan of those with MBC is still just 2-3 years. Or, that after years of campaigns, only 3-5% of the money that we raise for breast cancer in the US actually goes towards researching metastatic breast cancer – the stage that kills.
We may not need more “awareness” in the dictionary definition sense of the word, but we are in desperate need of more education regarding breast cancer. If October could be a month during which people learned the real facts and truly worked toward improving/extending the lives of those affected by breast cancer, it’d be my favorite month.
If you are interested in donating to worthy non-profits or purchasing from companies that are truly invested in the cause, here are a few suggestions:
METAvivor – 100% of donations go toward stage 4 MBC research grants
The Cancer Couch Foundation – every donation is matched penny for penny – which means your donation is doubled – and 100% of that goes toward stage 4 MBC research grants
The Pink Agenda – they focus on educating young professionals about breast cancer and have also contributed more than $2million to bc research, including metastatic research
The Magenta Love ToteSavvy – this is a product, not a non-profit, but it is the best purse organizer on the market, whether or not you have kids, and 100% of proceeds of this product go straight to METAvivor
If you don’t have money to spare – participate in Novartis’ #KissThis4MBC campaign, which donates $15 to MBC research for every *public* selfie or boomerang posted on social with the hashtag #KissThis4MBC
I’ll start by saying that this post is going to be a doozy. The past 2 months have been completely hellish, and I’ll explain why below. In the hell that this time has been, I’ve been thinking a lot about the whole “cancer is a gift” thing that seems to permeate our culture, and I have a few things to say about it. Honestly, this feels like one of the most important posts I will ever write. If you read one thing from me, please read this.
So, first, here’s more about the past 2 months so that you know where this post is coming from and what I’ve been dealing with.
In the beginning of June I took a major downswing. The most noticeable, and, for me, worrying symptom has been that all of a sudden, I can NOT stay awake. So when I use the word “fatigue” here, I’m not talking about being tired, or sleepy, or even not being able to do normal activities anymore. I’m talking falling asleep out of nowhere in the middle of conversations out in public. One minute I’m talking, the next Evan is shaking me awake. I tried to walk up a short hill to get home and the fatigue hit me so hard that I tried to literally sleep on my feet halfway up the hill. If he hadn’t been there to usher me along and physically push me from behind, I would have just curled up on the side walk and gone to sleep. I have been awake about 4-9 hours out of every 24 hour period. Let that sink in. I’m sleeping ALL the time. Just, losing my life to sleep. And it’s not for lack of effort or motivation – I am guzzling caffeine like it’s my job, I’m back on steroids, I’m now on Ritalin, and I’m still unable to stay awake. It’s. Awful.
At the same time, all my other symptoms started amping up pretty considerably. The headaches and nausea. It’s now not unusual for me to wake up vomiting. I have to wake up and immediately take anti-nausea meds, wait an hour, then try the rest of my meds/breakfast or else I’ll throw everything up. The headaches are brutal and no longer adequately controlled by pain meds. So the few hours in the day that I am awake, I’m completely miserable.
My back pain is the worst it has ever been. Most mornings, I wake up and can’t physically move. At all. Evan has to scoop his arms underneath me and lift me out of bed while I cry out in pain. Which has been especially challenging lately because he broke his collar bone.
Yep, you read that correctly. Evan has a broken clavicle. Together we are pretty useless. So we’ve been bouncing around living between my parents’ house and my sister’s. We are back home now as an experiment but I’ll be honest, I’m nervous about it. Neither of us can do housework, cook, drive, lift things, anything really. It’s bad.
All my other neuro symptoms have also been getting worse. My memory is gone. I get confused a lot. I flip words and letters around and have a hard time spelling basic words. I am extremely irritable and want to punch everything in sight, but to be honest, who wouldn’t? I fantasize every day about just running out the front door. I just so badly want to run away. But I can’t. So I feel so trapped and miserable and suffocated and I just cry and pick fights and then cry more because these might be my last days and I’m spending them crying, miserable, panicking, and fighting with my loved ones.
Which brings me to the real doozy. I have spent the last couple weeks legitimately wondering if this is the end, in a way that I have never done before. It has certainly felt like the end. If I can’t stay awake, how can I live much longer? It seems logical. And I’ve been panicking. Panicking so hard core. I have not handled this with grace and humor and all those things we hope for at the end of our lives. I have wailed and sobbed and felt gut wrenching heartache at the thought of saying goodbye to my family and the girls growing up without me. I asked my doctors if this was the end. I admitted to my family that I think it might be.
It’s been so bad, you guys. So bad.
At first my docs thought that all this was due to adrenal insufficiency – that basically I’ve been on and off of steroids for so long due to my brain Mets that my adrenal glands have shut down and stopped producing their own normal steroids/hormones, making me feel like crap. But, now we’ve experimented with double the dose of dex (steroids) that should have fixed that problem, and I’m still struggling, so that is seeming less and less likely. I should see an endocrinologist soon to get their take.
I spent all last week going through all the cancer tests, because it seemed very likely that it was back in my brain. But, I had a stable brain MRI and PET/CT. We are holding off on another spinal tap for now.
So now we have zero answers, and I still feel like shit, and I’m still miserable and have a quality of life that is deteriorating by the day.
I am also bored out of my mind. I can’t watch TV, because headaches. I can’t write. Or work on the computer. Or read. I can’t go for walks or do anything active. Being around people is even difficult when I am this fatigued. It gets in the way of absolutely everything. And this is no kind of life.
I’ve been crafting and sewing a lot, but there’s only so much I can do, and even that takes energy that I don’t have.
Harriet + Ginger has been really helpful – for those who don’t know I started a new project making and donating lavender eye pillows to cancer patients, loved ones, care-takers, and providers. I am also selling them (you can contact me to purchase or purchase on Etsy) and profits go towards the materials for the free ones that I dontate. I also very gratefully accept donations to help me fund the free ones, as I can’t fund them myself. So far it’s going really well and gives me something to do and a sense of purpose, and it takes my focus off of my own hell hole which is good for me. Please contact me if you’d like to place an order, or fund an order to be donated to an infusion center/non-profit. I will organize all the donation logistics if that’s something you are interested in. Since the beginning of May I’ve donated about 500 of them, and people seem to respond really well to them, so that’s something.
Which is a nice lead in to what I really want to say right now. Sure, I might not have discovered my love of sewing or started Harriet + Ginger had it not been for cancer (I also might have, who knows) – that DOES NOT make cancer a gift. It means that I took a really shitty circumstance and found a way to do something meaningful anyway. I’ve noticed that there seems to be a resurgence of this “cancer is a gift” attitude in some cancer circles (and yes, there are cancer circles, which is ridiculous in and of itself), and I just can’t keep my mouth shut, especially after the truly horrendous couple of months that I’ve had.
I understand the temptation to make cancer seem not so scary, not so formidable. But it’s lies, and it doesn’t do anyone any good. Cancer is scary. It is formidable. It causes the patient and everyone who loves them indescribable pain. And that must be acknowledged.
I feel particularly strongly that we cannot give the disease the credit for the betterment of our lives after diagnosis. Often, people get a serious disease like cancer, and they go on to make all kinds of big life changes as a result (changing careers to what they’ve always dreamed of, or the like), but WE MAKE THE CHANGES THAT BETTER OUR LIVES, not cancer. Had the patient not gotten cancer, likely another stressor or life event would have precipitated those very changes – because it is the patient who has the courage to change their lives. We need to stop with this “cancer is a blessing” or “there is magic in cancer” bull shit. It is lies. The truth is that there is pain and death and frustration and gut wrenching fear for the patient and everyone who loves them. People are dying and suffering, all the time. I am suffering.
All the good stuff that comes along as well comes along because the patient and their loved ones make it happen. I made advocacy happen. I made Harriet + Ginger happen. Every patient I know who has gone on to do great things after diagnosis, or live a life they are happy with (things don’t need to be done on huge scales), did so because they are amazing people. Patients do not lie there and wait for the magic of cancer to take over and bless their lives with money and love and fortune. It’s just all lies.
Telling the world that cancer is a gift is, to me, akin to telling a soldier who has had their life wrecked by the front lines that war is a gift. Nope. Anything that that soldier comes home to accomplish or do or believe, they deserve the credit for. They went on to build a life that they wanted despite the unimaginable horror that war put them through.
I think it’s actually pretty offensive to those of us who have overcome shitty circumstances thanks to our own will power to be told anything different.
Cancer is not a gift. There is no magic. Patients live meaningful, good lives after diagnosis thanks entirely to their mother fucking resiliency. The end.
So first things first, – my medical update. I am finally starting to feel better from the pnemonia. Thank the good lord. It’s going to take me a while to get my strength back, but I’m happy that I can start building it back.
Medically, things are weird. I got a voicemail from my pulmonologist that something lit up on my lung on my last scan, so of course I completely panicked and figured that meant the cancer has spread to my lungs, which it might have. We have no way of knowing right now. She said that it might be infectious, could be cancerous, or it could have lit up as a result of a part of my lung that has collapsed – this also showed up on the scan. Um…..wtf? This was all in a voicemail and sounded far too casual for my liking. Lung tumor? Collapse? So, I’m trying not to panic, and figure that slowly getting my strength back can only help things to heal. I still get pretty short of breath doing the smallest amount of activity, so I’m trying to take baby steps, which for anyone who knows me knows is reallllyyyyy hard for me. I get excited, and have a hard time taking things slowly. BUT Evan has taken on the role as my personal trainer and he’s keeping me in check :).
My last brain MRI was stable, though Stanford said they wanted their lepto specialist to review it. I’m not sure what this means. I feel like they are always worried about me and lepto. Trying not to panic. Unfortunately my neuro symptoms have amped up again, so I’m getting another brain MRI as soon as they can schedule it.
I am also like 50 emails/texts/vm’s/fb messages behind, and while I have read all of them and appreciate the support SO much, please just be patient with me. Now that I’m getting better from the pneumonia and can handle short bursts of screens again, I will start making my way through them. I feel terrible that I have been ignoring everyone, and I’m terrified that people will stop reaching out due to my silence. Please know that if you sent me something that I never responded to – I got it, I read it, I love you for it, and I will respond soon. Thank you.
Ok, on to the actual meat of this post. I was able to go to the LBBC conference on metastatic breast cancer in Philly in April, where I participated in an advocacy training program called Hear My Voice. This was my first big conference. My friend aptly said at the end of one day, “I’m so exhausted. I’ve felt all the emotions every minute of today.” It’s a pretty accurate description. It was inspiring, educational, and so nice to connect with others in my situation, especially those who I have been communicating with online but never met in person (until now), but it was also exhausting being surrounded by cancer stuff nonstop all weekend, meeting a ton of new people, and having to cognitively focus all day – all while recovering from the flight and trying to manage my neuro symptoms. I have a hard time processing conversations these days as I start to get tired, which, combined with the headaches and nausea, can make a weekend like this challenging. At some point my brain just shuts off, and I kind of power down.
I also went to my first METUP die-in at the conference, which was, well, basically all the emotions. We listened to a few really interesting speeches on the disparities in MBC research/treatment (something that desperately needs correcting), honored those who have passed, and then laid down on the ground while a bell was rung 113 times to symbolize the 113 men and women who die every day in the US from MBC.
113 is 113 too many. I don’t even know what more to say about that anymore, what to say that would make people care, that would inspire action and change. We are tired of being in pain, tired of watching our friends die, tired of dying.
I flew out and roomed with April (of Wildfire Magazine), who is one of my closest friends, so she took care of me when I was sick, and it was sooooo nice to be able to relax in the evenings with someone who knows me well and understands all of my issues, especially after some of the emotionally draining events. Plus, she’s awesome and fun and I love hanging with her, so good times. I also met an amazing new friend, Emily, who I have quickly come to love. All in all, despite how much I enjoyed the conference, I was also definitely appreciative of getting room service in pjs at the end of the day with two friends who make me laugh.
Unfortunately the flight home was BRUTAL – like, drove home from SFO with a plastic bag in my lap, wondering if we should go to the hospital kind of brutal, so I’m feeling like I should stick to road trips from now on. That is, of course, until someone calls me and tells me that Michelle Obama is going to be at a BC event and that I might have an opportunity to meet her. Then I’ll be on the next flight with all my anti-nause and pain meds in hand. 🙂
Ok, on to my advocacy thoughts inspired by the weekend:
I learned a lot at the conference about the different types of advocacy, and it got me thinking about just how many varying worthwhile approaches there are. There is something for everyone. It doesn’t matter what your strengths or skills are, there is a place for you in the advocacy world; there is a way that you can improve the situation for those of us with MBC. You don’t have to go on the radio or fly to DC to lobby for funding (though both of those are awesome options, of course). You can make a phone call to your elected official, or talk to the people in your life about metastatic disease and help correct all the misinformation out there, or support a friend who is going through it in a more one-on-one way, or put together a couple of care baskets. There are so many options, and all are appreciated.
I think what is also important to remember is that 1) the MBC community needs all the help we can get, so even if someone is misinformed, there’s a way to help correct that misunderstanding kindly and with respect, rather than with frustration, anger, and/or judgement. Far too many people just don’t know about MBC. I didn’t before I got it. 2) Sometimes it’s not a matter of inaccurate information, but rather of differing advocacy styles. There are a hundred different types and styles of advocacy – all of which are worthwhile and needed – and I hope that we can start to be a bit more appreciative of everyone’s efforts, because no one’s efforts are any more legitimate than anyone else’s. Whether you are into story telling, fundraising, political/legislative action, education (one on one, or on a bigger scale, like book projects), supporting patients/loved ones, making care packages, media efforts, public speaking, participating in events like conferences, volunteering for an MBC non-profit, or some other activity that I haven’t thought of – it’s all important and helpful.
There is also an unfortunate divide in the breast cancer community between metastatic and early stage patients, which is often at play here. I understand that early stage patients can feel scared by us metsters, because, let’s be honest here, no one wants to become us. The fear can manifest into some unhelpful at best, unkind at worst, statements. On the other side, metsters sometimes get frustrated by the lack of accurate knowledge about metastatic disease that some early stagers have (we need to work hard to correct this – far too few early stage patients get well-educated by their docs about metastatic disease).
The result is that everyone retreats into their respective community and gets angry with those on the other side. Which does very little to help improve the situation for metastatic patients, or any breast cancer patient for that matter.
Side note: I recognize that this may not be a popular post. I’m prepared for that backlash. But I feel that it’s important to say, so there it is.
The reality is that the metastatic community needs as much help as we can get in advocating for better treatments, services, support, more research, more funding – all of it, so that we can live better and longer lives. We need to help each other, and we need help from those who don’t have metastatic disease. Plus, all this actually benefits those who haven’t metastasized, too, because the better we understand metastatic disease, the more likely we are to be able to prevent metastasis. And, as I’ve said before, finding better treatments for metastatic disease could take death off the table for ALL breast cancer patients, which would be a complete game changer.
Due to the reality of MBC, at some point each of us metsters will likely reach a point when we are too sick to continue with our advocacy efforts. That’s why we so desperately need other people on our side, people who will pick up where we leave off and continue the fight for us. We can’t do this on our own. We need more people in our corner. A bigger crowd to stand with. Let’s welcome them into our community.
Those of us with MBC do EVERYTHING we can to try to save our own lives, but we need help – help buying ourselves more time. Precious, sit in the sun, giggle with our nieces, cuddle our spouses time.
So, to all of you out there already working on behalf of the mets community, whether or not you have MBC:
This post is decidedly less wonderful than my last one. I don’t even know where to begin, other to say than I saw this quote about being an octopus and would love nothing more than to hide in the shade of an octopus’ garden right now. That sounds delightful.
I really don’t have the energy to write a full blown, quality post, and also there’s sooooo much to update on since I haven’t written in so long, so I’m going to do my best to just get the information down. I drafted a post about 2 moths ago that I never published, so I’m going to pull from that and fill in the blanks and hopefully what emerges is somewhat coherent.
I guess I’ll start with the most recent, and also with explaining my complete radio silence. I have been really, really sick, for a LONG time. I came home from DC mid Feb, and by the time I recovered from the flight I came down with the flu, pneumonia, and eye infections. Then after a couple weeks of that I had about one day of feeling ok before I came down with another lung infection that has COMPLETELY kicked my ass. The other day I crawled up the stairs on my hands and feet and had to take a break half way through (one flight). Then my chest CT showed something, but they weren’t sure what, so they said pneumonia, partial collapsed lung, and/or lung tumor. Yesterday I heard that they think it’s an infection, but there is some concern about something that showed up in my bones, so now I have to follow up about that. My bone pain has also been escalating, so hard not to worry about it. Headaches/nausea getting worse too, so likely will have another brain MRI in my near future. In the meantime, I’ve spent the majority of the last month in bed or on the couch feeling like crap.
Before I got sick, I had a full spinal MRI at Stanford, which meant being in the MRI machine for almost 2 hours. That’s a really long time to be in a small claustrophobic tube. Stressful, and just really no fun.
Then a couple days later I went back to Stanford all day for a brain MRI in the morning, followed by an appointment with my neurosurgeon in the afternoon. The MRI results were actually good. My radiation necrosis is stable, which means that the treatment (Avastin) is working, and there were no new tumors, which is always a win. Still, it’s always tiring and stressful spending that much time at Stanford going from scan to appointment and just being at the cancer center all day.
The next day I had my IV treatment (herceptin/perjeta) in the morning, followed by a PET/CT scan in the afternoon at the hospital. I am never, ever agreeing to a scan and treatment on the same day again. It was so freakin brutal. I felt like poop to the point that I couldn’t really function. I was so beyond exhausted that I repeatedly involuntarily passed out (in public), and people had trouble waking me. I think that happened 4 times throughout the day. Results of the scan were good – stable, no new tumors.
But bear in mind that all these scan results are now 2 months old, so essentially obsolete in the the world of MBC. I’ll probably be repeating all these scans soon.
After my infusion I went back to Stanford to see my neuro-oncologist. It was basically a follow up appointment to discuss what to do from here. We are going to try to slowly taper my Avastin down and see what happens – if the necrosis starts growing, we’ll bump it back up. I have to stay on a low dose of steroids because at this point my body has probably stopped producing any of its own like it’s supposed to. And another super discouraging conversation about all my symptoms.
I walked out of that last Neuro-Onc appointment sobbing. I felt trapped in a maze of pain. That might sound dramatic, but it’s honestly how it feels. I feel like I’ve been lost in that maze for over a year, ever since brain surgery, with no way out. I’m tired. And to be honest, I’m jealous. That’s a hard one to admit, because it’s not the most gracious of emotions, but it’s true. I’m jealous of everyone else who just gets to live their lives. Jealous of all the people my age whose definition of a bad day is getting stuck in traffic on the way home from work. I understand that everyone’s problems are relative, and I genuinely don’t judge anyone for being upset about things like traffic. If that’s the biggest issue in your life, you have a right to be upset about it – and I really don’t WANT you to have bigger problems. It’s just that I would give anything to be in that position, and I am so, so jealous, because I’m so so tired of facing these enormous problems every f-ing day. So after yet another appointment where it was explained to me that I likely have all these symptoms simply due to the trauma of brain surgery/radiation, and that the doctors don’t necessarily know how to fix it – which means I just have to continue to live with this pain and with all these symptoms – I walked out of the building with tears streaming down my face as I repeated over and over again to my mom, “I’m so jealous of everyone else. They don’t realize how lucky they are. I’m so tired.” And my mom reached her arm around me and pulled me in towards her and held me up as I crumbled – a gesture that I would have pridefully pushed away a few years ago, but one that I gratefully accepted that day, because without it I don’t think I could have kept walking.
There’s also been far too many big losses in the MBC community lately. Beautiful, kind, amazing women who had so much life to live and who deserved so much more.
Just please, be grateful. That’s all I ask.
None of this can be fixed, and I know that. I have to just accept it, and accept that this is my situation and my life, and remember that I do have some seriously amazing things in my life that I AM very grateful for. Some days I am closer to that acceptance, but on hard days, it feels like there is nothing to do except cry. So, I cry.
There’s also been A LOT of back and forth between a lot of doctors about what to do about my chronic pain and headaches. Some feel that I should stop all opioids (but with no real explanation as to why), and others think that’s a bananas idea. After many, many conversations and research and thinking, we decided to go with the recommendations of the doctors who know me best and who have been treating me for the longest, who all unanimously agree that if the pain meds help me function and give me a better quality of life (which they do), then there’s no problem staying on them.
On top of all this I am constantly dealing with side effects/symptoms (hard to distinguish between the two) that range from waking up every morning with a bloody nose to a tremor in my hand that means I sometimes can’t work my phone to intermittent double vision that requires that I close one eye to see properly, to the weight gain/puffy face from steroids that means every time I walk past a mirror I am reminded of my situation, to daily debilitating headaches/nausea. I can no longer sleep laying down, so I sleep propped up as if I’m sitting in a chair. It’s just hard, you guys – this MBC life is hard.
Many people praise me for staying “positive,” especially after reading my blog. Everything I write is genuine, but alongside all that appreciation for life is the truth that this life is impossibly hard, even when things are going “well” and scans are stable. I find it difficult to adequately express the magnitude of that difficulty to people who do not live with cancer.
I know that much of what I’m feeling is due to being sick for too long, being in too much pain, living with too many unknowns, and having too many scans and treatments and appointments in too short of a time span on too little sleep. So now I’m running on empty, and the volume on the losses and pain has been turned up to 11. I’m having trouble hearing anything else above all of that.
That said, before all this went down I did go to DC for a breast cancer fundraiser, which was really awesome. I got to meet Dr. Jill Biden – such an honor – and see all my friends in DC. It was overall a fantastic trip. I also got to go to the Pasadena International Film Festival with Bonnie and my family to watch bare screen, which was a really fun trip. I’m always so proud to see bare on the big screen, and I just had a really good time with Bonnie, Matt, Erin, and my parents.
Though the girls still help me get through everything, I haven’t been able to be around them a whole lot because I didn’t want to get them sick. But, there was one day in between all the infections when we felt pretty confident that I wasn’t contagious and I really needed a pick me up, so I called Anna to see if I could borrow Kenzie for an hour. Sometimes, when it’s just me and her, I can kind of pretend that she’s mine. So for an hour we played with stickers and crayons and drew pictures, and her giggle quieted the background noise of cancer that is constantly swirling around my head. For that hour, I could be ok.
Final thought – this week Evan and I went to Monterey with Bonnie, Shane, and Calvin for an afternoon and it was really fun. Have you ever seen a happier little boy? I wish everyone could live life with this level of joy.
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.
The 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 :).
Speaking 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).
In 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.
Once 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. I 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 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. Cali 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.
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!
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.
“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.
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.
That’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.
And 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.
Also please come to our Feb 3 screening of bare + panel discussion on cancer in young adults in Santa Cruz, CA. All info here!
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:
Lauren 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 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 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.
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.
Moderated 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?
The 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!).
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.
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.