Saturday, February 28, 2015

Army of Women

I am a big believer in women's rights.  Heck, I might even go so far as to describe myself as a feminist.  Which is why it pains me a little to write the following statement:  Men and women are not created equal.  At least not where medicine is concerned.  In fact, I believe the treatment of women and men as equals is a dangerous practice and must be stopped.

Ladies, before you speed dial Emma Watson to notify her there is traitor in the camp - hear me out.  Women are not the same as men because - biology.

Now, unless you happen to be a Republican lawmaker in the news these days, I'm betting the average reader has a fairly strong understanding of female anatomy.  But, should a refresher course be in order, please allow me to summarize the finer points: our junk is just - different.

In addition to being unable to accurately portray the SNL classic D*** in the Box, women's bodies are generally smaller and have a higher fat composition than our male counterparts.  And as most men, PMS memes and sitcom episodes will gleefully confirm - women have higher estrogen, progesterone and other hormone levels which fluctuate throughout the month.

Women's bodies function differently than men's because they are.  So it shouldn't take that big of a leap to make the assumption that medications and medical treatments would also affect women differently.

It turns out that's true.  Studies have shown women may have an altered response to treatments ranging from aspirin to anesthesia due to variations in metabolism and absorption rates. Some treatments currently in use today may not be as effective for women.  Others may require dose changes to avoid potentially toxic side effects.

But here's the kicker - we don't really have a lot of information about that.

Until the year 1993, women of childbearing age were actually banned from participating in any clinical trial.  This means there were essentially no studies which involved women of childbearing age for any medication, device or procedure approved prior to not-very-long-ago.

If you are a woman and this statement doesn't concern you - you're not paying attention.
Do your part!

Underrepresentation is scary stuff.  And although the FDA has since lifted the "no baby-makers" regulation and encourages both male and female participants in trials, currently less than one in three clinical research subjects is a woman.

So why the perpetual clinical sausage fest?  As a research coordinator in charge of enrolling patients for trials, I can tell you "enroll more women" is not as simple as it sounds.

Women are often caregivers of children or other dependents and may be unable to schedule appointments around their other obligations.  We are also less likely to have quality insurance benefits or jobs which allow time off for medical appointments.  And there are other enrollment obstacles to contend with such as pregnancy or lack of transportation in rural communities which limit trial participation.

But instead of shrugging shoulders at the obvious gender disparity in research, oncology guru Dr. Susan Love decided to do something about it.  Namely, she found a way to connect women to oncology research trials across the country through a novel program called Army of Women.

Here's how it works:  1.  Determine that you are, in fact, a woman.  2.  Go to and fill out a short questionnaire.  3.  Wait for researchers will contact you about research trials you may be a candidate for.

Boom.  Science - it's that easy.

Some of these trials require a history or family history of cancer.  Others do not.  Most require some sort of tissue or blood sample which can be drawn the next time you are at the doctor's office and shipped to the corresponding research lab to evaluate for genetic markers.  (There is a particularly fascinating trial going on right now which is enrolling pregnant women with no history of cancer that will evaluate potentially protective biomarkers found in breast milk.)

Participation in any of these trials is the most effective way to "donate to research".  In the process, your contribution will also help to end gender disparity in medicine and may even help lead to the scientific breakthroughs of the future.  Not a bad way to spend the morning, if I do say so myself.

So sign up today.  Let me know when you do. Heck, while you are at it, sign up your mother, your sisters, your grandmother and aunts.  Share this with every woman on your Facebook friend list.  Because the only way to secure a seat at the decision-making table - in medicine or otherwise - is to drag it there our damn selves.  

Wednesday, February 18, 2015

The Best Party.

American Gothic - Caro Edition
Though he would never admit it to anyone willingly, my husband can be a bit of a sentimentalist.

Even after more than thirteen years, two kids and a cancer - there are still days when he surprises me.  Today became one of those days when Hunky Hubby sent me a quote by Bill Murray from a Saturday Night Live interview which made me stop in my tracks and instantly brought tears to both of our eyes. 

Now, sentiment tends to be contagious  - and because I won't be able to sleep tonight until I make sense of what this story means to me - It's apparently time to pull on my writing pants (Oh, It's a thing).  So hold tight and thanks in advance for being the world's most affordable therapists.

"Gilda got married and went away. None of us saw her anymore. There was one good thing: Laraine had a party one night, a great party at her house. And I ended up being the disk jockey. She just had forty-fives, and not that many, so you really had to work the music end of it. There was a collection of like the funniest people in the world at this party. Somehow Sam Kinison sticks in my brain. The whole Monty Python group was there, most of us from the show, a lot of other funny people, and Gilda. Gilda showed up and she’d already had cancer and gone into remission and then had it again, I guess. Anyway she was slim. We hadn’t seen her in a long time. And she started doing, “I’ve got to go,” and she was just going to leave, and I was like, “Going to leave?” It felt like she was going to really leave forever.

So we started carrying her around, in a way that we could only do with her. We carried her up and down the stairs, around the house, repeatedly, for a long time, until I was exhausted. Then Danny did it for a while. Then I did it again. We just kept carrying her; we did it in teams. We kept carrying her around, but like upside down, every which way—over your shoulder and under your arm, carrying her like luggage. And that went on for more than an hour—maybe an hour and a half—just carrying her around and saying, “She’s leaving! This could be it! Now come on, this could be the last time we see her. Gilda’s leaving, and remember that she was very sick—hello?”

We worked all aspects of it, but it started with just, “She’s leaving, I don’t know if you’ve said good-bye to her.” And we said good-bye to the same people ten, twenty times, you know. And because these people were really funny, every person we’d drag her up to would just do like five minutes on her, with Gilda upside down in this sort of tortured position, which she absolutely loved. She was laughing so hard we could have lost her right then and there.

It was just one of the best parties I’ve ever been to in my life. I’ll always remember it. It was the last time I saw her.”
Any day Bret wears a tutu is a good day.

This.  If there has been a more perfect expression of pure love and friendship - I've not heard it.  

As I read these words it brings me back to the days of my own precious farewell parties and the people in my life who have refused to allow me to slip quietly into the night.  They have held me as I've said my  goodbye's - to a life I once believed I would lead and a body which unexpectedly betrayed.  And somehow, through the darkest of times, they kept me laughing - sometimes hysterically and while in awkward positions (looking at you here, Ali).  

There is no way to know exactly when we will walk out those doors for the last time -  but we can choose who is invited to the party.  Though we may not see each other as often as we like, I am ever so thankful for the amazing people who keep the party going in sickness and in health.  There is no question, I could not do this without you.

Especially a certain hunky hubby who reminds me every day that life is worth fighting for.  I love you so.

"The goal is to live a full productive life even with all that ambiguity.  No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had - you will have lived."  
~ Gilda Radner


Sunday, February 8, 2015

Talk Science to Me.

For all the fuss about the importance of funding medical research, it has come to my attention that the
I have severe metro envy after visiting DC.
average bear has no idea what "research" really looks like.  But of course, before my own diagnosis with a serious disease, I was one of those average bears too.  Don't get me wrong, I knew research was important. I read and kept myself updated about the latest study results but frankly I had only a vague idea about how the results in those research papers were formulated.

Fast forward a couple of very full years and I am not only a participant in two important research trials but I also work as a cardiology research coordinator as well as dabble in patient and cancer research advocacy.

So - lest you think research is something found exclusively in the pages of medical journals, I'd like to take a moment to blow your mind:

Research is happening all the time, right in your own back yard. And you can help medicine make progress through doing things other than purchasing pink ribbon coffee mugs.  (Need a reminder?  Watch my Tedx pep talk here. )

This summer I had the opportunity to travel to Washington DC to serve as a Consumer Advocate for the Department of Defense Breast Cancer Research Program.  This is a very fancy title which means I was on the board that helped decide which research proposals received DOD funding for FY 2015.

Allow me to geek out a little here - but this was pretty much the coolest thing I have ever taken part in.

This was my first trip to the capitol and I was blown away by
 this amazing city. 
Hundreds of highly-trained, uber qualified people from around the world - both scientists and consumers - took part in this program, which meets whenever DOD research funding is doled out (frankly, not often enough, these days).  We were assigned to various panels and provided with several research proposals many months in advance.  These we were required to review in depth and provide our recommendations based on a set criteria.  Our recommendations were then presented and voted on during a confidential, closed door session.

Now, the BCRP is technically a military operation and the proposals we reviewed were proprietary.  In fact, everything about this experience - from military assigned computers to the security guards positioned at each door was a reminder that we were not in Kansas anymore.  It  also turns out the government tends to take their investments rather seriously.  There were even torrid tales of panel members being arrested and stripped of their credentials for leaking information in the past.  So, it goes without saying I can't share any of the fascinating information I gleaned in my time there (orange may be the new black, but it does not go well with my complexion).

But just between you and me - many of the details about this science were so far over my head that even if I wanted to leak information it would sound something along the lines of:  "So there's this new pathway they found on aggressive tumor cells that may make it so targeted treatments can be developed in the future which will allow my friends to live long lives, raise their children and hopefully not experience brutal side effects in the process."
I must have seen this view a thousand times in photos,
but there is something very powerful about actually
standing where great men (and women) have stood before.

Now at this point you may be questioning the validity of our American government that someone with such a rudimentary understanding of ridiculously specialized science would be placed in a decision-making role in charge of funding THE FUTURE OF MEDICINE.

You would, of course, be correct.

The scientists submitting proposals, as well as those who served on this board have, in many cases, spent their entire careers studying a single molecular pathway in the hopes of discovering a breakthrough.  These are brilliant minds who accomplished more before the age of 20 than most people (myself included) could even comprehend. And these are also people who dwell almost exclusively beneath the soft neon glow of laboratory hood lamps.

The research we were reviewing was brand-spanking-new-baby-science and the proposals which eventually receive funding will take place in petri dishes and mice models within progressive research institutions around the world.   But while it was exciting to witness "science in action", there was no mistaking, it was not the present generation of cancer survivors I was representing. Best case scenario, the technology discovered within the fine print of these research protocols will be 10-20 years away from being tested on a single human.

 But that's exactly how each and every medication, device and treatment on the market today started out.

Want proof?  Herceptin - the game-changing chemotherapy drug that will hopefully allow me and thousands of others diagnosed each year with aggressive, HER2+ cancers live long enough to raise our children - originated through funding provided by BCRP.
If these walls could talk...

All medical progress starts with an idea.  The idea must be tested and retried until it can be proven.  The idea must be able to be replicated in petri dishes, animal models, tissue samples, in healthy people and finally in those who are affected by the disease.  And then this same idea must prove to be more effective - and be accompanied by less toxic side effects than the current therapy.  And all of this must take place prior to receiving approval by the FDA.

Because of these strict requirements, any medication that actually makes it to market has basically won the research lottery. And if you have ever questioned why new medications come with such a steep price tag - it is often because investors must cover the costs of the myriad failures it took to discover a single success.

 But that's what it takes.   This is exactly why funding research is so important.  Progress is a building block, and it takes time, money and the expertise of people who have spent their whole, damn lives evaluating molecular pathways under microscopes.  Ultimately, even among the most promising proposals, around 99% of them will fail.  They will fail because that is also how medicine evolves - not because the scientists were not doing their job, or being wasteful.  Certainly not because of some "big pharma" conspiracy theory.
Abe-y Baby.

Anyone who believes that a cure for cancer exists but is kept safely behind lock and key has grossly underestimated the foe.  Frankly, I have seen the inner workings of cancer research and I am here to tell you - if there is a fault, it lies not in our stars - but rather our organization.

This is why, programs such as the BCRP are so monumentally important.  It is essential that each precious research dollar goes toward studies that will be effectively carried out by people who are knowledgeable and skilled.  But it is just as essential that at the end of the day, the research approved will help us to inch closer to common goals - decrease cancer related mortality rates, improve quality of life for those who undergo treatment, and ultimately find a way to prevent or eradicate this disease.

Which is where I come in.

Thankfully, my role in this panel was not to determine if the "elegant science" presented in these research proposals was promising or sound.  Rather,  it was to determine the impact this science could potentially have on the breast cancer community should it prove to be true.  By requiring consumer reviewers be part of this process, the scientists gain the perspective of the people they eventually want to benefit.

Seriously - this city is stunning.
If you've never been, find a way.  You won't regret it.
I was far from alone in my role as a consumer reviewer.  In fact, the orientation room was filled to the gills with strong, dedicated men and women intent on representing the tens of thousands diagnosed and living with breast cancer each year.  Some of us had medical experience, many did not.  But all of the reviewers had two things in common - we each had experienced breast cancer first hand and we were all currently active in advocacy.  I was nominated by Young Survival Coalition however there were also representatives from ACS, Komen, Tiger Lily Foundation and many other organizations.

Though I cannot discuss the panel I served on or identify the brilliant minds who served with me, I can tell you it was an amazing experience - and though it is a commitment of time and brain power, I would certainly encourage others to serve as well.  Flying home from our nation's capitol, I left with a renewed sense of optimism about the future of breast cancer research - as well as with a few awkward nerd crushes on the scientists who are helping to make life better for people like me.

And who doesn't need a good nerd-crush now and then?
DC - especially the Smithsonian Museums is
probably my version of Disney Land.
I could spend weeks exploring.
I hope to come back some day soon.

Nerd note:  Amazingly, this same careful review process occurs every time DOD research funding is doled out.  (Interested in participating as a consumer reviewer?  Learn more about the Breast Cancer Research Program here.)   Actually, there are also programs relating to other types of cancers, autism, spinal cord injuries, orthopedics and a multitude of other diseases.  These panels need representation from consumer reviewers in order to effectively point research in the right direction.  Interested?  Here's a link.