Tamoxifen, Not a Love Story. Part One.

Here is an excerpt from a recent post on the #BCSM website:

Endocrine Therapy Side Effects – Your Input Requested! By DrAttai On April 13, 2013 · 7 Comments

A bit of crowdsourcing help, please! I’m giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting – the title is: “Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying” (...) Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way – I’m interested in the side effects and remedies only. (...) Thank you all in advance for your help! After the talk, I’ll post the slides.

Here's my input:

I have had three primary Breast Cancers. Each was ER positive.

After my second primary, in 2005, I agreed to go on Tamoxifen, starting about a month after completing radiation. At that time, I still had an active infection in the surgery site (from lumpectomy 6 months prior); I was still healing from the open wound/burn caused by radiation, and I was in very poor shape physically, emotionally and spiritually. Ironically, at diagnosis in March 2005, I was the fittest, leanest, healthiest I had ever been, with an athlete’s resting heart rate, and I have always been a “tough” person with a high tolerance for pain.

So, when I began Tamoxifen, I was very much diminished. Immediately, I got terrible headaches (they went away after a month or so), and yes, I would get “hot” but nothing too extreme. That, I could live with.

Very quickly though, I went from having very little energy to having none whatsoever. My mind became completely and utterly shrouded in clouds of dense fog that every now and again would thin out, but only for a second or two. I began to have recurring nightmares* where I was trying to walk (never mind run!) and could not lift my feet, and when I would try to call for help, if I could find the words, they would come out in extreme slow-motion. I described it as feeling like I was constantly underwater, walking uphill, against a strong current. I have always had a sharp, wicked-fast brain, especially with words and concepts. That all turned to blubber. I would blank out, could not find the words/terms I needed to express myself, and to make matters worse, it constantly felt like I had those words at the tip of my tongue but could not summon them…. So there was an almost constant state of distress, anxiety and dismay. And fear that I would be like this forever. 

Many days, I did not feel safe to drive. Meanwhile, I was busy trying to get my life back together after this second cancer, was searching for work, and living alone with nobody to take care of me. At the time I used to joke that I could certainly carry on like this for 5 years (usual course of treatment with Tamoxifen) if I were independently wealthy and had a staff — a chauffeur, a chef, etc. to take care of everything. But even if I had been living the Downton Abbey lifestyle, it would have been unbearable and I wouldn’t have been able to consider continuing to exist like a zombie.

I toiled along for a year, and finally, after a detailed conversation with my oncologist, she agreed to give me a month off, just to see. Immediately I began to feel (only a tiny bit) better, and we prolonged the drug holiday. As I continued to improve (still only at a snail’s pace) she finally recommended that I stop taking Tamoxifen as it was having such a severe impact on my daily life. 

I was and still am extremely dismayed and angry that Tamoxifen is not viewed by many as a drug whose side effects can be as serious and impactful as those of chemo. I have done chemo, so I know of what I speak. Chemo is brutal, devastating, yes. BUT, for early stage Breast Cancer, adjuvant chemo is not something you have to do for 5 years. I am saying this because when I was done with “treatment” (i.e., radiation) for my second cancer, I had exhausted all my savings and resources and could barely afford my rent and health insurance premium, never mind medical bills. I reached out, for the first time in my life, for financial aid, and was told that Tamoxifen did not qualify as “cancer treatment” by organizations that offered to help cancer patients going through cancer treatment. So, if I had not spent my own money when going through what these organizations termed “treatment” and asked them for help then, maybe I would have had some left over by the time I was dealing with the side effects of Tamoxifen??

If I had been able to continue the prescribed course of Tamoxifen, I wonder if I would have developed a third primary. I will address my third primary in a separate comment.

When Tamoxifen has side effects like these, you don’t look sick, you are not bald, your blood counts are fine…. your suffering is invisible and you are very, very, very easily dismissed. Please shed light on this and help us.

Thank you for reading,

Liza Bernstein

*By the way, the nightmares I described were nightmares, but they also were expressions of what many of my waking hours felt like.

PS: here's the post I wrote about how this #BCSM initiative is a form of collaborative medicine in action.

More Collaborative Medicine In Action, #BCSM Edition, Part Two.

It began with a post I caught on Facebook:

Tweets ensued, including:

@itsthebunk - you asked for it! Endocrine Therapy Side Effects - Your Input Requested! bcsmcommunity.org/endocrine-ther… #bcsm
— Dr. Deanna Attai (@DrAttai) April 13, 2013

And now, on the #BCSM website, a second opportunity for patients to contribute to the advancement of medical knowledge (I wrote about the first one here). Yes, that does sound pretty grandiose! What I mean is this: when you are experiencing the type of side effects a drug like Tamoxifen can induce, you can discuss them with your oncologist, you can vent about them at support groups, you can blog and tweet about them ad nauseam. That's all fine and dandy....

But to be able to give that information to a physician who not only cares deeply, but who is planning to use that information in a presentation she is giving at a medical meeting.... well, that does get you thinking pretty big.

I continue to be excited and inspired by what we can accomplish when we harness technology to facilitate change.

Collaborative Medicine in Action

It began with a tweet, that I RT'd after reading the related post on the #BCSM website.

Participatory medicine! #MedX RT @stales: Breast Cancer Community: Unique Opportunity 4 Patients & Advocates! bcsmcommunity.org/unique-opportu… #bcsm
— Liza Bernstein (@itsthebunk) April 11, 2013

Others chimed in, including:

RT @chemobrainfog: Thanks @jrgralow for asking for input BEFORE study is designed. ow.ly/jYIMB ==== "patients as partners" #bcsm
— Alicia C. Staley (@stales) April 11, 2013

And:

Thnx! MT @boobcancerninja: I did it! MT @seattlecca: Pts help design clinical trial answering 5 Qs via #BCSM [SURVEY] ow.ly/jYVnJ
— Julie Gralow (@jrgralow) April 11, 2013

I've excerpted the introduction from that post here:

Unique Opportunity for Patients and Advocates! 

By DrAttai On April 11, 2013 · 13 Comments 

Here is a unique opportunity for patients to have their voices heard, BEFORE a clinical trial gets approved. Many thanks to Dr. Julie Gralow (@jrgralow) from the University of Washington for asking for advice from our community. 

Patient Survey Regarding Follow-up of Early Stage Breast Cancer  

We are seeking patient input through this survey to help in planning a national clinical trial designed to determine how to optimally screen for breast cancer recurrence.

For details about the clinical trial being planned, please read the rest of the post. It's important and fascinating. 

Just as important and fascinating is the ensuing dialogue, much of which was sparked by the last  (and only open-ended) question in the brief and easy Patient Survey. I saved my answer to that question, and am reproducing it here: 

"Last Question: This study would allow us to study many other breast cancer “survivorship” questions during long-term follow-up. What are the main cancer and/or treatment-related problems that you think we should consider including in this study? (for example, this might include difficulty concentrating/”chemobrain”, menopausal symptoms, numbness/tingling, depression/anxiety, pain, weight gain, sexuality/body image, fear of cancer returning)."

"All the items mentioned in the above question should be included.

I would be most interested in seeing how you would approach studying these additional important issues so as to get actionable data.

People who survive early stage BC after receiving adjuvant treatment (I have had three primaries myself, so I know from experience) end up with a host of long term side effects, from chemobrain/cancerbrain to higher instances of anxiety/depression/"ptsd"-symptoms, etc. I know you know this too.

Another aspect of long-term survival is the psychological impact of being watched so carefully by one's medical team (pro = more likely to find a recurrence or relapse sooner; con - heightened anxieties, etc due to fear of recurrence). Being followed every few months with blood tests could both give a sense of reassurance and heighten the anxieties. This also contributes to the isolation many survivors experience. You have to keep going back for follow-up visits, keep wondering if IT has returned, while most everyone else you know continues with their usual routine.... This is what you just have to learn to live with.

Meanwhile, now that I am in the position of basically having to rely on hoping I don't get any symptoms, it is terribly anxiety-producing. My oncology office happens to order tumor markers during long-term follow up, so if mine happen to go up, I will be one of those few women who will have an additional possible clue as to whether I have developed mets. I also understand there isn't always a 1-1 correlation between marker levels and the development of mets. More uncertainty!

This is a great idea for a study. I just hope there will be other more reliable pathways to detecting Early Stage Mets (for example, non-increased-radiation studies: I'm tapped out for PET and CAT scans, per my oncologist, due to the numerous scans/mammos, etc I've already had in my 19 yrs of 3 BC primaries. We will only use those in an emergency at this point.). We need better tools!

I appreciate your thoughtfulness and intelligence in reaching out to us in these preliminary stages of your trial. My name is Liza Bernstein and I can be reached via Twitter at @itsthebunk. I'd be happy to contribute further to your thinking process during this development process and answer any questions you might have, if you were so inclined.

Thank you,

Liza Bernstein"

Not surprisingly, some of my concerns are echoed in the comments from other survivors, and the great thing is that the researchers are addressing them as they come up. 

Surely this type of dialogue will help researchers design even better and more relevant studies. It certainly empowers survivors to join in the process. The ensuing dialogue gives me hope that our ideas and concerns will be seriously considered.

This is an example of what collaborative medicine, fueled and enabled by social media and technology, could look like.

Farewell, Beautiful Soul

The lengthy excerpt below from today's New Old Age blog in the New York Times speaks to what one of my dearest friends is experiencing right now.

Around three years ago, her dearest friend (I will call her Beautiful Soul for privacy reasons) was diagnosed with Stage IV Breast Cancer, and began Hospice Care at home at the end of 2012. Beautiful Soul left us two nights ago, and my dear friend is in the throes of that loss.

My friend and Beautiful Soul created a very special world in preparation for Beautiful Soul's passing, and I know for sure that as this blogger says below, there was "a sense of ceremony and intimacy, suffused with honor" when it happened.

At La Piedra, by Liza Bernstein

I hope my dear friend, somewhere down the line, after the tsunami of extreme grief has ebbed, flowed, and receded again, will find that sense of peace and acceptance, despite the unbearable pain of loss.

Knowing her, she will. But at what cost?

Again, Advanced Breast Cancer, Metastatic Breast Cancer, Stage IV Breast Cancer -- there is no cure, it is the cancer that kills and takes our loved ones from us. It takes them young, it takes them old. It doesn't discriminate. And yes, we may experience and learn important life lessons and wisdom and growth and so forth when we are there with them side by side.... but I'm feeling selfish. I don't want any more of these life lessons, I am enraged that my dear friend (and all others like her) has to experience this unspeakable suffering of the heart and soul.

I send her and all like her my deepest love and comfort.

May Beautiful Soul rest in peace.


Here's the excerpt:

After Caregiving, Comfort in Having Helped

By JUDITH GRAHAM

On the day of her death, Mom’s grandchildren came in, one by one, to bid her farewell. My brother, sister and I held her hand. I had a sense of ceremony and intimacy, suffused with honor. The honor came from acknowledging Mom’s long, hard journey, and from facing things squarely, encountering what it means to be human, in extremity.

A year later, on the anniversary of her death, I stood on a bridge crossing the Chicago River and had an extraordinary sense of time both collapsing and stretching into infinity all at once. It was a warm, sunny day, the water gleamed bright below and I felt Mom with me, amid all the beauty. 

In the end, I was not left with the loss I had dreaded so much. What I felt was a sense of fullness, uncolored by fear. 

I tell you this because during years of struggle, this may not seem possible, this sense of knowing you stood your ground with love and honor, this deep acceptance of all you did and left undone. But it is, and knowing this is one of the insights that followed my years of caregiving, which informs all the work I do here.

On The Importance Of Being Disruptive

Excellent quote from ePatient Advocate, Regina Holliday, from her post about her petition to Hallmark to create hospice cards. 

She is being noticed. 

Forbes has picked up the story, and the petition is gaining signatures.


Innovation requires this kind of intelligent courage too.

I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard. 

~Regina Holliday

Mademoiselle X and the Pre-Op

Recently, a young woman I've been mentoring through her Breast Cancer journey -- I'll call her Mademoiselle X -- asked me to help her prepare for her post-double mastectomy revision surgery.

Mademoiselle X's initial double mastectomy surgeries did not leave her with a good result. Thankfully, nothing "went wrong" from a health perspective... she healed very well, there were no infections or complications... but for the fact that the implants she received seemed like they had been intended for someone requesting a drastic (and I mean DRASTIC) and intentionally un-natural looking breast augmentation.

After the usual insanity and extreme distress of the diagnosis, the chemo, the fears of infertility due to said chemo, and the ordeals of her first two surgeries, the last thing Mademoiselle X wanted and needed was to have to revisit any and all of this as a once again vulnerable patient, dependent on surgeons to leave her with results she would have to live with for the rest of her life. But, given the situation, a revision was what she desperately needed.

Before her pre-op, we discussed her fears, needs, wants, expectations. We also brainstormed questions and tactics to ensure she would get the information she needed from the surgeon, all the while getting said surgeon to hear and understand exactly what she did and did not want.

I coached her to talk about precise, specific details, and to be explicit about her needs. This, no matter how polished, professional, educated, strong, or valiant you may be, is no easy task, especially when you are going through this for the nth time, and your new surgeon is... well... a Brilliant Surgeon (i.e., super achiever, technical guru, tending towards uber-human). Hence our coaching sessions.

I am sharing here our exchange of texts immediately following her pre-op with the surgeon:

Mademoiselle X: Doc scared the crap out of me, talking about 6-8 percent rate of infection where he'd have to remove implant altogether and I could have flat chest and droopy skin for 3 months before another surgery with loads of scarring... like the worst of the worst Scar Project pics you've seen. I'm so desperate to be smaller, but now I'm scared.

Me: They always have to tell you the scary side effects and scare the crap out of you. 6-8% infection rate also means 94-92% NON infection rate. You don't smoke, drink abusively, or have diabetes... you are healthy and will have to be scrupulous about wound care etc... which you will be anyway. I don't want you to think I am being dismissive... just trying to give you some perspective. Sorry you have to go there.  

This brought me straight back to my initial visit with my oncologist after my first breast cancer diagnosis. She was recommending chemo for me, but had to give me the list of potential side effects. One of them was LEUKEMIA. What? To kill the cancer inside my body, you are prescribing a drug that could possibly cause another, lethal, cancer? How am I supposed to breathe after hearing that, let alone continue with my life?

The toxic levels of anxiety we experience as cancer patients leave our nerves raw and exposed. It takes time and diligence to heal that frazzled mess, and in the case of Mademoiselle X., the last thing she could have understood rationally in the moment was what the risk of that side effect really, truly was, given her particular circumstances.

I know there's a responsibility to disclose these potential side effects, but we patients need to learn to interpret them and gain some perspective on what they really mean. No easy task when you are in the throes of your cancer journey, but a crucial one nonetheless. This would be a useful tip for caregivers and loved ones too.

My Kind of Generalist

A quote from "The Myth of the Generalist," a post by Tomasz Tunguz:

"The only meaningful definition of a “generalist” is a specialist who can relate his own small area to the universe of knowledge." --Peter Drucker

In other words, a generalist is someone has demonstrated learning one field, who has an open mind and who can articulate relationships between known domains and new ideas.

A team built of these types of people would be a great fit for a startup - smart, flexible thinkers who communicate well.

Startups bob and weave. They change architectures and products and markets and tactics. Startups need teams who can change the tires on the bus as it’s traveling at 60 mph; they need a team of MacGyvers, who combine a little bit of knowledge, a wad of gum(ption) from their pocket and some raw smarts to solve a problem. That’s my kind of generalist.

via The Myth of the Generalist | LinkedIn.

What Inspiration Looks Like

This is what should appear when you look up the term "inspiration."

Watch Terri Wingham's short video to Sir Richard Branson, read about her brilliant #Delhi2013 program, and join the Mob For Good with a simple RT, a blog comment, a Facebook share, etc.

Working together we can help the A Fresh Chapter Alliance Foundation send 12 cancer survivors to volunteer in India in February 2013. They are going to Delhi to serve on community projects and get to know local cancer patients.

Once their mission is accomplished, they will have had a tangible positive impact on the lives of others and, almost unwittingly, gained immeasurable personal healing as well.

Beyond that, they will have brought our vastly differing circumstances closer together and shed light on global cancer issues:  How can it be that women in Africa would rather get AIDS than cancer? How can it be that cancer patients in Vietnam must sleep on the street when receiving treatment at hospitals far from their homes?

I am so proud to know Terri and thank her for inspiring me. I hope she will inspire you too.

Here is my note to Sir Richard Branson in support of #Delhi2013. It's one of the many comments to Terri's blog post. I hope you'll add yours!

Thanks for reading.

Liza

* * *

To Sir Richard Branson,

It’s a No-Brainer: Virgin Airlines is the perfect company to sponsor the A Fresh Chapter Foundation’s maiden voyage. Visionary, cutting edge, social, driven, global, daring, walking the talk (in this case, dare I say Flying the talk!)…. these are just a few of the qualities you and Terri, and Virgin and her foundation share.

After a cancer diagnosis obliterated Terri’s life as she knew it, she fought back, not only to regain her health, but to explore the world, and, here’s what’s truly outstanding: to Give Back. She discovered for herself that there is no greater healing power than to care for others. She could have stopped there.

With that, however, she chose to empower fellow cancer survivors to understand this wisdom and put it into practice for themselves and those they will soon be serving on the other side of the world.

Starting with nothing, she has built a solid program, forged international alliances, recruited 12 outstanding cancer survivors, and organized all aspects of their mission to volunteer in Delhi, India in February 2013.

Her drive, genius, gigantic heart and brilliant mind led her to accomplish this in a very short time. All that remains for this mission to succeed is for Virgin to become our Official Airline.

I say “our” because amongst other things, I am a 3-time cancer survivor, a member of the weekly #BCSM (Breast Cancer Social Media) Twitter chat, a recipient of an #ePatient Scholarship to #MedX — Stanford University’s Medicine X — and I am looking forward to volunteering with Terri and her foundation on future missions to Africa and South America.

I urge you to partner with us!

Thank you for your attention,

Sincerely,

Liza Bernstein

The Healing Power of Yarn Tangles

I've been unraveling lots of yarn tangles these past three months -- literally, as I've been knitting and crocheting with fervor. It's also fitting because my life right now is behaving just like a huge mess of tangled, randomly and nerve-wrackingly intertwined threads of undisciplinable, knotted yarn. 

If you've ever tried to untangle a mess like this, you know the only way to succeed is to slow down, remove any and all attachment to the result, breathe deeply, relax your fingers and hands, breathe again, deeply, and again... And on and on until you and your hands accept the state of the yarn and gently feel their way through the mess.

You zone out, you become one with the yarn (yes, I know, the saying has become so trite, but its true meaning is profound), and over time, your fingers find their way through the tangles and knots. With gentle persistence, you somehow manage to unravel it all.

I started writing this post earlier this year -- in February, to be precise, the day after Rachel and Susan died. I left it mid-sentence and found it in my drafts box today.

It might do me some good to spend more time unraveling yarn... it's a great way to lick the Emotional Flooding Monster.

My ePatient Bio from Stanford Medicine X

This bio was published in the 

Stanford Medicine X 2012 ePatient eBook which 

details the genesis of the groundbreaking 

#ePatient Program and features the 

inspiring stories of my fellow ePatients.

In early 1994, when I was newly diagnosed with my first breast cancer, I was initiated as an ePatient via a pre-internet social network—people connecting with phones.

My oncologist put me in touch with a former patient and encouraged me to ask her about her story of surviving cancer. I’m certain she knew that this woman would not only inspire me, but share tips and connect me to resources that would help me on my way…which, of course, she did. That’s how I discovered Harold Benjamin’s book “From Victim to Victor,” and the then quasi-revolutionary concept of “Patient Active.” This approach, which my oncologist and her former patient modeled, clicked for me, and thus began my ePatient journey.

In October 2005, when I began the recovery process from my second breast cancer, I joined a support group moderated by my radiation oncologist and an oncology social worker. I discovered the power of sharing stories and information in a safe setting and found solace in my ability to help and inspire people by “just being there” as a 2x survivor.

In December 2010, when I was recovering from 18 months of chemotherapy and surgery for my third breast cancer, I followed my curiosity about new research at the annual San Antonio Breast Cancer Symposium, explored their website, and found the event’s Twitter hashtag: #sabcs.

I read the feed until I saw a statement that intrigued me, at which point I jumped in and asked a question. Next thing I knew, a real person from a real, top-notch cancer center took the time to answer me, and my first (of what has now become many) real Twitter conversation about health care began. Here’s that seminal tweet (I’m @itsthebunk):

@danafarber: @itsthebunk 1) Fear/denial; some women feel they don't want to know. 2) The recent guideline changes make things less clear-cut. #sabcs 12/09/2010

Those three crucial experiences, plus many more, are what led me to become an informal patient advocate. I can’t tell you how many cancer patients I’ve helped since 1994, through an amazingly organic process. Someone refers a friend…someone asks a question in a support group…my oncologist asks if I don’t mind talking to a new patient…

I’ve been through it all. Each of my cancers were primaries, each was caught early and treated aggressively. While utterly disrupting my life, each episode has also been an opportunity for knowledge and growth. I’ve refined my knowledge, learned new things about coping methods and how to really heal, and developed my own tricks of the trade.

I’m deeply passionate about helping others become well-informed, engaged patients because I know one simple thing: getting a serious disease is terrible, but you have choices for dealing with it. If you can become a partner in your own care, your journey will be easier, you will be able to find grace and come to peace with agonizing decisions, you will meet some amazing people on the way, and you will discover how much inner strength you never knew you had.