Thursday, January 29, 2015

A Personalized Medicine Conference: From the Patient Perspective


I’ll admit that I was na├»ve last year when I knocked on the virtual door of the Personalized Medicine World Conference (PMWC). At the time, I was just months beyond a breast cancer diagnosis and highly motivated to drive change in the health care paradigm. When I saw the words “Personalized Medicine”, I assumed I’d found the place where patients were finally placed in the center of the circle.

I was quickly informed that “personalized” referred to the science surrounding the genome and that the conference was not patient focused. For a couple of months, I went back and forth with the organizer before suddenly the bent shifted and an entire Patient Track was created.

Ten days after yet another surgery, I attended the two-day PMWC14 conference. And was delighted by the patient-focus in the track led by Cancer Commons. I was asked to share my story and participated actively in providing feedback on products and processes that were shared over the course of the conference. Researchers, physicians and organizations reached out to me post-conference to ask more about how they could improve the patient experience. I felt as if the imperative shift from personalized medicine to PERSONalized medicine was in motion.

A year later I was dismayed to discover there was no patient track for PMWC15. How did patients suddenly fall out of favor? After all, as well all know, without patients, medicine is just a lesson in hypothesis and a purely academic endeavor.

But I attended anyway, determined to ask the right questions to the right people so that the right information can be shared with the right people at the right time in the right way. Right?

And I learned.

FACT: Everybody (and their uncle’s brother’s cousin) sees the correlation between positive clinical outcomes and tailored patient treatment based on genomic indications. BUT: Whole genome sequencing (WGS) and whole exome sequencing (WES) are still not accessible to all. In fact, not even cancer genome sequencing is available to most.

FACT: Technology and the ability to churn through massive amounts of data to find correlations are critical to being able to leverage genomic data (and all clinical data) to the benefit of the patient. BUT: Data itself is not the value. Algorithms that help make sense of the data are vital. And patient-reported-outcomes rarely figure into the mix.

FACT: The healthcare industry sees the value in sharing data across the globe. BUT: Silos still exist. In fact, silos are still the norm.

Brilliant minds and early stage innovations abounded from the patient-facing presentation by Martin Naley of pre-launch CureForward to the backend drug discovery and longevity research by Most Promising Company award winner Alex Zhavoronkov from In SilicoMedicine.

And then there were the luminaries. Hearing from CraigVenter – one of the first to sequence the human genome; chatting with GeorgeChurch – a founder of the Human Genome Project about how to free the data; and listening to Kim Popovits from Genomic Health – a company I am forever indebted to for the creation of the OncotypeDX test that helped me back up my refusal for chemotherapy with science; were absolute highlights.

After three days of presentations, panels and coffee line conversations I am amazed by the scientific progress yet quite frustrated by the lack of clear execution plans that make these innovations accessible to all physicians and ultimately all patients.

Oddly, the best news is these brilliant minds seem to share my frustration. This is the best news not simply because frustration loves company but because they are actively trying to rectify a few things.

Physician Rusty Hofmann shared a very personal story around the criticality of getting right information at the right time especially around non-standard situations and created Grand Rounds Health in order to help connect patients to specialists.

During the Promising New Companies presentations, John Adler CEO of Cureus shared his company’s mission of an open source medical journal that breaks down information silos by removing barriers to publication.

And, in what was one of the more patient-focused presentations, Brent Vaughan CEO of Cognoa, shared his company’s model of putting a diagnostic tool directly in the hands of parents in order to evaluate developmental delay potential and accelerate early intervention.

The environment was one of collaboration and sharing and the challenge will be continuing the collaboration after everyone has returned to their day job, their area of focus and, sadly, their silo.

From a learning standpoint, the conference was fantastic. 

From a patient perspective, I feel that exactly one year later, the biggest innovation is STILL yet to be operationalized: putting PERSON front and center in PERSONALized medicine – not simply in word but in practice.



Monday, January 12, 2015

How Are You? A Simply Complicated Question


Answering the question, “How are you doing?” should be a simple exercise.

"Fine." 
"Great!" 
"Amazing!"

Yet my answer ultimately depends on who is asking the question and how they’re asking the question.

A casual “How are you?” by someone who has not been intimately involved in the health drama of the past eighteen months, receives an unrestrained and unapologetic, “I’m fantastic.” Because, when I get right down to it, I am feeling relatively fantastic:

  • I am cancer free and I have resumed most of the activities that were put on hold or restricted while I recovered from a multitude of surgeries.
  • I am relatively breast symmetrical in clothing and, despite the scars, no longer feel as if I’m walking around sans body parts.
  • I no longer assume every ache and/or pain is a recurrence of the cancer that caused an upheaval of my life in the first place.
  • I resigned from my comfortable corporate job, parlayed my professional skills and personal passion toward transforming the healthcare experience and began empowering patients and caregivers through collaborative education and engagement.   

Did I mention I was CANCER FREE?!?

So, when I say, “FANTASTIC” I really, really mean it.

But when a dear friend and I catch up for hours and I am then asked the infamous, “How are you?” question, I pause. They really want to know.
And when a fellow cancer survivor asks the“How are you?” question, I pause again. They really want to know AND [insert my best Jack Nicholson impression here] they can handle the truth.

So how am I?

On a physical level, I am doing well.
Very well according to my surgeons and physicians but I am still plagued by pain and lack of muscular ability that can only be rectified by another surgery – one that I am absolutely not willing to schedule right now. I am allergic to Tamoxifen (the anti-hormonal drug that is supposed to keep cancer from returning) but the allergic reaction is preferable to cancer recurrence and any alternative treatments, so I take antihistamines regularly to stop erratic hives and swelling.

On an emotional level, I am doing well.
Very well according to anyone who hasn’t had cancer. I’ve returned to all the regular activities of a normal life. From the outside I resemble a no-name-taking, cancer-ass-kicking breast cancer survivor and thriver. But on the inside, I’m just me and there are a multitude of convoluted layers to the comfort and security I portray.

In other words, it’s complicated.

Artwork courtesy of my daughter

While I no longer assume EVERY ache and/or pain is a recurrence of the cancer that caused an upheaval of my life in the first place – the thought still crosses my mind more than 50% of the time.
While I’ve gotten the majority of anti-hormonal treatment side effects under control, I struggle wildly with others.

While I’m comfortable with my decision to undergo breast reconstruction, the realities have been startlingly different than the one-and-done type surgery I expected:  I rub on temporary nipple tattoos every few days and continue to try and regain the ability to do a full push-up.

While I no longer fear the abstract concept of death. I am still absolutely terrified every time I start doing the 5-year, 10-year survival rate math.

It’s complicated.

Perhaps a better answer to the “How are you?” question is: Grateful.

I am extremely grateful. For my husband. For my children. For my family and friends. For a wonderfully supportive and energizing community. For successful treatment. For the amazing people I’ve met along this journey. For opportunities to give back and opportunities to support others.

I am grateful for my life and all that it contains - including the complexity.


Monday, December 15, 2014

Health Literate and Patient-Empowered Youth: How do we support the next generation?


When I received the “Your Test Results are Now Available” email, my piqued curiosity soon turned to unbridled frustration. Complying with the email’s simple instructions, I clicked on the link to view my 13-year old daughter’s recent lab results but was met with the following message, “You do not have access to view this information.”

As is it turns out, while I am still able to schedule appointments and pay copays for my young teen, my daughter must actually provide her explicit permission for me to view her health records and test results.

In a crisis situation, this brick wall of confidentiality would have been mind-numbingly irritating. However, in this case, after an initial frustration subsided, the roadblock gave me pause.

Since her toddler years we’ve been discussing healthy habits.
Whether it was a visit for a well-child check-up or for an injury or illness, I have always encouraged both of my children to answer physicians’ questions directly (rather than my answering for them).  
And, at the end of every visit, I always prompt, “Do YOU have any more questions for the doctor?”

But I’d always heard those questions and I’d always heard those answers.

Now my daughter was of an age where she could and should be able to question medical professionals on her own. 

And I understand that, while my husband and I have raised our children with open communication on tough issues, there will no doubt be conversations she would rather have with her physician and not her mother. Realizing that she would one day need to navigate the healthcare system solo, I began to question whether or not I had raised her to be a health-literate and empowered patient?

As parents and as educators, we can obviously lead by example on the health responsibility front but some honest to goodness conversation never hurts.
Please join me on Twitter on December 18, 2014 at 9 a.m. PST for #KareoChat where we will discuss the nuances of how to raise our next generation to be knowledgeable and empowered healthcare consumers and generally health literate.

  •  At what age/situation(s) should children be involved in conversations regarding their care? Checkups? Flu shots? Immunizations?
  •  How can we involve children in decisions regarding their health and medical care at an age appropriate level?
  • Does technology play a part in educating today’s youth to be empowered patients & healthcare consumers? How?
  • What else can parents do to raise educated and empowered healthcare consumers and patients?



Saturday, November 22, 2014

Gratitude is in the Perspective


Although counterintuitive to some, I find expressions of gratitude flow much more easily in the difficult times. When everything else is falling apart, the one or two positive outliers shine like beacons begging me to hold tight in gratitude. My mind gravitates toward focusing on and absorbing this recessive positivity and allows the ugly reality of whatever else is going on, to fade into the background. At a very basic level, I believe this is the epitome of mind over matter and, honestly, how I’ve gotten through many uncomfortable times.

The beacon in a long race is the image of the finish line and the sense of accomplishment I know I will have when I finish the run. The beacon at the bottom of a steep hill is the view at the top I am sure to relish.

If there is no available beacon, I will employ a challenge to act as a beacon. The challenge the day after a mastectomy was a 10K walk one week post-op. The challenge hatched for after my second mastectomy and bilateral reconstruction was a very slow half-marathon.

Indeed there are a variety of tactics I employ to focus my thoughts in times of crisis and most of them involve a mind over matter bent. But earlier this week, I participated in an exercise with my fellow cancer coaches that demonstrated just how uplifting focusing on the good can be even when the baseline is pretty groovy already.

I feel the need to share.

Tools:
  • A timer
  • A buddy

Time: less than 5 minutes

How to: You have exactly two minutes to, in stream of consciousness form, articulate what you are grateful for. Your buddy will stop you (mid-sentence even!) at the end of those two minutes. And you will share the word that best describes your state of emotional being at that time.

And then you switch.

I was fortunate to ‘play’ this game with three other phenomenal people and just listening to their gratitude was uplifting. What each of us takes for granted on a daily basis is somewhat mind-numbing. Hearing their gratitude was a gentle, non-accusatory reminder for me that simple the act of being able to enjoy a meal is a gift. 

A comfortable home. Financial stability. Truly these things are realities we often assume into the fabric of our day to day. I am not ungrateful for them but I am not regularly or overtly appreciative. 

Parents who are living and of sound mind. Good friends and the promise of camping for Thanksgiving. The steady rainfall. Again, my realities that, once spoken seemed to take on a bigger life and space of their own. 

The love and support of a spouse and the laughter and joy of healthy children is a total and utter bonus.

In the weeks before this exercise, my health was good and my personal and professional life enriching. Yet I had fallen somewhat into the doldrums and was seeking the new-new thing. A race? A vacation? A new adventure? 

In two minutes, without changing a thing, I found new perspective.

My word, at the end of the exercise, was Uplifted
If I had used several words one surely would have been “eye-opened” too.

I won’t stay here. I know I’ll get absorbed back into the go-go-go and do-do-do. But I have a tool to leverage any time I need a boost. And now you do too!

If you do try this activity with your friends, spouse, children, co-workers, please let me know how it works for you!





Friday, October 3, 2014

Moving from Breast Cancer Awareness to Action


October is Breast Cancer Awareness Month.

Many of us could not be more aware.

And what we need is research for better treatments, a cure and, someday soon, prevention. Usually this is followed by a request for gobs of money. But I'm not asking for money. I'm not asking you to purchase anything pink. And I am not asking you to bare your breasts or participate in any other pink-power-themed activities.

If you would like to help move an entire society from awareness to action without spending a dime, please consider taking a few minutes to sign up for the Army of Women and consider participating in a study. Most of the AoW studies are completely non-invasive and strive to gather information on both healthy women and women who have been diagnosed with breast cancer. We are looking for patterns, triggers, some way to get ahead of the disease.




Men, while you too are susceptible to breast cancer, the Army of Women is currently only taking females in her ranks at this time. Instead, please continue to support the females in your life and encourage them to join.

Together let's move from breast cancer awareness to breast cancer ACTION!

Thank you in advance.



Friday, September 19, 2014

A Package of Self-Confidence Arrived in the Mail

A package of self-confidence arrived in today’s mail.

The medium sized, non-descript, padded envelope could have contained just about anything.

But it contained these…




One of my more difficult adjustments to reconstruction after mastectomy is my lack of nipples. There are nipple sparing mastectomy techniques but some are not eligible based on the location and nature of their breast cancer. Sure, nipples can be built, tattooed or otherwise added, but not until symmetry has been achieved.

I mentioned in an earlier post that Breast Reconstruction is not for Sissies.

Indeed. Breast reconstruction surgery is rarely one and done. Adjustments are to be expected, complications not as rare as you might think.

My reconstruction was supposed to be complete after going under the knife on March 24th.

Dr. H was removing my Temporary Expanders and replacing them with silicone gummi bear implants underneath the pectoral muscle.

This surgery was a mere 2 ½ months after the expanders were placed because my left expander sprung a leak.
In other words, the circumstances of my exchange surgery were not ideal.

As if to help my head resonate some universal balance, it turns out the results of my exchange surgery were not ideal either.

My left side developed a seroma immediately, which has left the implant pocket more spacious that desired. My right side developed capsular contracture, which has left the right implant pocket far less spacious than desired.

In clothing, there is no easy distinction, my breasts look normal, you cannot tell the difference. Yet, if you recall, in clothing, you couldn’t tell I was lopsided when I had a prosthetic breast on my left side either.

But I could tell. And that is why I made the decision I made to have reconstruction in the first place.

“Expectations are pre-meditated disappointments.”

I’m not sure where I first heard that saying but, in this case, the phrase resonates with me. I EXPECTED to be symmetrical. I EXPECTED to be finished with surgeries. My reality does not meet my expectations.

But I am not physically or emotionally ready for another surgery.

The scheduling department has kept me on the list and dutifully promises to call month after month to check my readiness. My body just wants to feel stronger. And my mind just wants to enjoy the heck out of my stronger body.

So. No surgery. Yet. 
Which means nipple reconstruction/tattoos/whatever I choose, also needs to wait.

And thus the mail order self-confidence in the form of temporary nipple tattoos.

I have pooh poohed the idea of temporary tattoos using cost, awkwardness and I-don’t-know-what-color-to-get as excuses but, after a weekend at the SF Zen Center with some incredible people, I finally made a commitment to try them out. And, in a fit of self-love when I ordered them last week, I ordered two variety packs so I can try out areola shades at my leisure.

In the privacy of my own home, I decided to put them on right away!

What I learned:
  • Measure, Measure, Measure: Eyeballing the nipple zone doesn’t lean toward symmetry, especially when the targets aren’t exactly symmetrical. Enough said.
  • What’s Beneath Really Does Matter: For years women have been purchasing lingerie to feel more confident. Turns out temporary nipple tattoos have the same effect.
  • Laughter is the Best Medicine: My breasts still don’t look even or close to normal. They don’t. The left still has a diagonal scar that runs from my lower sternum to under my armpit. The right side scar matches but is slightly smaller. Stepping back and noting that I am putting on temporary nipple tattoos to help make the above look normal made me laugh.
  • Happiness Can’t be Bought: But self-confidence can! I was happy with my health yesterday. This afternoon, I’m feeling a little more secure in my body. I think it has little to do with the actual result of the tattoos and everything to do with the fact that I took action. 

As I type this and prepare to push "PUBLISH", I think back to a phrase from MedX tweets: “The opposite of privacy is vulnerability.” At the time I responded that I agreed but it was the openness that led to building of a supportive and authentic community. And I still believe that.

I cannot be any more vulnerable. I am talking about my nipple tattoos publicly in a forum that doesn't ever go away. But I’m not talking to hear myself talk and I'm not talking to make anyone feel uncomfortable (unfortunately some, no doubt, will). I’m talking to all those women out there who are like me. And I'm talking to all those women who one day will be in a similar situation.  I am reminding them that they too have the power to help make themselves feel whole and self-confident again, even if they don’t look it.

Know you have options and please know you’re not alone.


Thursday, September 11, 2014

Tamoxifen Toe and other Wonky Side Effects


On Sunday evening, while playing a card game with my 11-year old on the floor of our family room, I noticed an odd bulge on the big toe nail of my right foot. In between playing my losing cards, I felt the bulge and then tried to scrape at it with my finger.

Nothing.

My toenail was covered in several layers of polish and, at first, I assumed that perhaps that was the culprit. When I moved my fingernail under the bulge, the toenail lifted up. Completely detached from the left side of my nailbed.

No trauma. No fungus. My toenail just popped off.

I’ve never just touched the bottom of my toenail and had it pop off. Ever.

I run. Sometimes I run long distances and I’ve definitely had toenails turn purple after marathons. I lost a fingernail once after slamming my own hand (accidentally!) in the front door. Again, this involved discoloration and what I would term as big arse trauma.

After announcing to the household that my toenail had just popped off the nailbed and simultaneously losing the card game, I turned to the only Dr. I can call on at 8:30pm on a Sunday: Dr. Google.

A search for “Detached Toenail Tamoxifen” brought me only more questions.

However, a search for “Tamoxifen Nail Issues” brought me here

The following treatments for breast cancer can cause nail changes:
·         chemotherapy:
·         tamoxifen, a hormonal therapy

Tamoxifen causes nail changes? Really?!? This was not in my prescription’s “Black Box Warning.” This was nowhere in the conversations I had with my oncologist when she placed me on the drug and then saw me every three months for check-ups.

Finding the above information brought a sigh of relief just as it brought a bit of despair.
  • Sigh of Relief: At least I knew what was going on.
  • Bit of Despair: Nine more years of Tamoxifen. Nine more years of the side effects I’ve already experienced and nine more years of discovering new ones. On my own.

One husband hug, a big "that sucks" and a tear and a half later, I’d resolved myself to “Well, this is the deal and at least it’s not cancer.” (Yes, everything now gets triaged in this way.)

I thanked Dr. Google and emailed my own new-to-me* oncologist with the latest goings on. Just under 24 hours later I received this response:

Dear Stacey, 

It was very nice meeting you the other day. Totally normal to feel the way you do about changing oncologist. 

Now, the nail problem you are having is not so common with Tamoxifen. I see it all the time with chemotherapy but not so with Tamoxifen. I think the same advise goes for chemotherapy or non-chemotherapy induced nail changes. 
Make sure you keep the cuticles moist and clean. Trim the nail short. Also, of note, tamoxifen in premenopausal may cause osteoporosis instead of helping it, so calcium/and vitamin D supplementation may help. 
I recommend 1500mg of calcium and 2000 units of vitamin D daily. 

Hope this helps. 

{My New Oncologist}

Hearing that my Tamoxifen Toe was “not so common” alarmed me a bit. I don’t necessarily want to be an outlier in the side effect space.

On Wednesday morning, I met a friend for coffee. She  was diagnosed with breast cancer just months before I was. I told her about my ‘new side effect’ and she gasped, “You are NOT serious?!?”

I laughed and said, “Yep. Totally.” I assumed her gasp was of concern and maybe a little grossed-out-ed-ness but when tears welled up in her eyes, I knew something else was afoot.

“I lost one three months ago. And I’m losing another,” she said. After much discussion she announced, “I just thought I was getting old.” This woman is in her 40s and it made me sad to think she had chalked it up to old age and not told anyone.

Wednesday evening I brought my Girl Scouts to a leader meeting to share their hard work over the previous year and met up with another mom who was diagnosed three and a half months after I was. Since she is on Tamoxifen, I told her about Tamoxifen Toe. Again, a gasp.

And again, a gasp because she has lost one too.

In the scheme of things, losing a toenail is party cake compared to losing a breast, losing some lymph nodes and especially to losing your peace of mind. But, in the scheme of things, knowing about possible side effects before they happen is pretty darn important.

I’m not angry with my oncologist. She didn’t put me off and I believe that she gave me sound advice when she heard what was going on. But I am frustrated about the lack of communication on the issue.

Patient advocacy is a two way street. As patients, as the ones experiencing the side effects (or what may be side effects!) we need to share. With our doctors, with our fellow patients, with our caregivers who advocate for us in so many ways.

Speaking of fellow advocates:  I posted last night the fact I had met a third person with Tamoxifen Toe. In my short 140 character tweet, I mentioned, “She lost one too.” Only after Liza (@itsthebunk) and Suzanne (@AskDrSuzanne) immediately responded did I realize that, if you hadn’t followed the saga since Sunday, I appeared to imply we were losing toes. Not so. Toenails. My sincere apologies for the drama and my undying gratitude for the support!**

So here it is: Have you lost a toenail while on Tamoxifen? PLEASE let me know in the comments section***. I’d like to bring this information to my oncologist and others – let’s give them at least some anecdotal data – so they can share. A longer term benefit would be figuring out WHY toenails fall off and what we can do to reduce our risk. A much longer term benefit would be to supply this information back to the field of research and see if we might be able to engineer some changes!

Anger drains my energy. There is absolutely no point in my being angry about the side effects but there is definitely a point in helping other patients know what may happen with their bodies BEFORE it happens.



* Dr. J, my oncologist left earlier this year to have her second child and move her practice closer to her home. I chose my new oncologist based on Dr. J’s recommendation and the recommendation of several women in my support group.
** Also HUGE thanks to @leahleahleah @luluchange14 @bccww who gave me tips and tricks which have also been passed along!
***Please let other Tamoxifen users know. And PLEASE let your doctors know.