Orphan

UNITED STATES - **Warning: This post is about neither cancer nor hockey. History and Law from this point forward, just to issue a spoiler alert.**

You've heard of all the biggies - cancer, diabetes, heart disease. I bet you haven't heard about glioma or myasthenia gravis. They're what's known as "orphan diseases", and in the United States, there is a called the "Orphan Drug Act" that I find absolutely fascinating.

Orphan drugs were created to treat these very rare medical conditions. The economics of the world drug market makes it almost inconceivable that a manufacturer would create medicine for anything that would have a small market; perfectly logical in an capitalist society. And make no mistake, those large drug companies are able to offer incredible discounts to people who can’t afford their products, so there is a tangible philanthropic effort tied to type of economy.

This Act, passed in January of 1983, encourages drug companies to develop drugs specifically for conditions with a low number of affected people (less than 200,000 in the United States). It is actually a financial burden for companies to do that, were you aware? They simply are unable to make a profit unless the numbers are bigger; a staggering realization. How amazing that we, as a nation (in the form of the FDA) were able to step up and say, "Hey, we know this wouldn’t make sense for you to create. Let us help you assume some of the cost so that we can save as many lives as we can." Ok, those are my words and not those of the FDA. I extrapolated, I am sure they won’t mind. I always extrapolate as I read congressional acts, I mean come ON I know you do it, too.

Every week, new rare diseases are discovered and they are without treatment. To date, there have been 350 orphan drugs approved for sale in the United States. These small but important discoveries have helped ALS, MD, Huntington's, to name a few. Since the beginning of the new year, 25 drugs have been designated by the FDA as treatments. (You can search this cool database to see all the treatments being developed on the FDA's website.)

I tell you this as encouragement, my friends. It may seem like everything is only made for the big crowds, the popular kids. Every once in awhile, the hearts of the people speak out and allow absolute generosity. Thank you, my United States Congress, for reaching out your hands and helping to lift up a handful for the betterment of all.

Wisdom

INDIANAPOLIS - Some of us try really hard to learn all we can during the time we are given, and sometimes absorbing all of that data makes our brains hurt. I have, for the past five years, read about cancer on a daily basis. No exaggeration; I’ve read about everything from cancer fundraisers in every little town across America to landmark research being conducted at the highest levels of scientific study. Yet, every time I finish reading that day’s updates, I realize that my scope of knowledge just got smaller, not larger.

Most articles are inflammatory – created, it seems to be less informative and more to create panic about a drug or procedure. It so happens that there is new research about the potential of threat for women who opt for reconstructive surgery following a mastectomy. This news hit, as a fabulous irony, as I was on the phone scheduling my own mastectomy and reconstruction. Niiiiicceeee.

And yes, of course there are studies out there that people should read. I have the FDA website bookmarked, that place is a veritable font of really cool information. But, I don’t let it scare me, I just use it for ongoing attempts to find wisdom.

Which brings us to knowledge, and the lack thereof. Are there risks with this surgery? Absolutely, and everyone I’ve spoken to has indicated that they were all well aware of them before they went in themselves. But, the people that have talked to me about this – many, many from around the WORLD – say that they were comfortable with their wisdom. Not that they knew everything about the procedure, or the technical design of their prosthetics, etc. But, that they knew enough about their doctors. About the research they have been funding for years. About their own self-awareness. About the myriad of clinical trials and tests in which we have all participated. About how they wanted to live their lives. About the fact that we, as a "cancer nation," have come so far that we aren’t about to start walking backwards.

Mostly, it’s in our hearts. Which is where knowledge becomes wisdom, in my opinon. We will do what we can with whatever we have so little peanuts like this one can say "I remember when my mama used to talk about cancer. I’m so glad we don’t have to worry about that any more."

Risks

INDIANAPOLIS - There are a few women who, immediately after being diagnosed with breast cancer, have the presence of mind to know that they want reconstructive surgery following the removal of a tumor. Some of us are baffled by the information, overwhelmed by the data and options, and quite frankly, terrified about all the other stuff we have going on at the time. Our thoughts focus on how to get rid of the bad tissue and can’t grasp the importance, if any, of rebuilding what’s left.

I tried in vain to explain to my 9-year-old daughter what was going to happen when I had my partial mastectomy a few years ago. She, being a fan of science fiction, asked if I would consider getting some sort of a laser gun installed instead. That way, I can be a superhero. Let’s face it, she said calmly, you just told me you were going to be wearing a wig. Why not a cape and secret weapons as well? That kid. Always bringing something never previously contemplated into the conversation.

So now we learn that a super-special risk called ‘anaplastic large cell lymphoma’ could be a potential side effect of reconstruction with implants. The American Cancer Society says that the risks are small, but risks nonetheless.

In my personal opinion, any time you go in for a surgical procedure, there are risks. You know that because you are asked to sign forms attesting to that fact. Sometimes myriad forms, but that’s a blog for another time.

Some of us, and I mean US quite literally – I have friends around the world who have written to me - are looking at doing this surgery soon. A few are doing mastectomies to remove questionable bits and pieces (me) and then ‘completing’ with reconstruction. Some of my friends have waited after their mastectomies for years and have decided this is the time to do reconstruction. Some of the gals who are new to the club are getting it all done at once. No matter why, when or where the surgery happens, I am right there with you, my sisters. Because I know that every single thing in life carries a risk. Somehow we try to find the right path and just pray like crazy.

As long as we know we have company along the road, it kind of makes it all worthwhile, doesn’t it?

Carla

GEORGE, SOUTH AFRICA'S WESTERN CAPE - She was made of solid iron, this little gal, but had a heart of solid gold. I met her at a dinner table in California, after she and her bike teammates had a long day of practice (and their practice could make any weekend biker cry, just so you know). They were all so beautiful, so feminine, so full of sprite and sass. Carla was so very young and lovely; long fire-red hair and a gleam in her eye to match. For the record, I have never seen little ladies consume so many carbs in one sitting. I was baffled. Awed. Jealous.

We lost her last month to a terrible bike accident. It wasn’t long after I’d met her that I learned of the hazards of riding a bike in the world today – particularly for pro riders. Since I met her, I have read on a weekly basis of the dangers and pray for my friends who have a passion for cycling. These challenges don’t sway these riders, sometimes it seems to motivate them even more. What a lesson for the rest of us, to just keep going, keep trying, keep persevering no matter the obstacles.

So to you, my dear Carla, bright light that you remain to be: Thank you for riding for Team Vera Bradley Foundation, and for those of us fortunate enough to meet you. For your inspiration and your dreams. Your dad told me in an email that you "were a role model without realizing it" and that you are in the arms of the Lord now. I hope all the little girls who watched you whiz by realize that they, too, can go out and achieve so much, and be a graceful example while doing it.

I’ll leave you with the application line from her green card, which I find to be absolutely perfect as a description: You are an “Alien of Extraordinary Ability." I should say so. RIP, dear one.

Carla
11/26/87 - 1/19/11
"The most decorated collegiate rider in U.S. history"

Read more:
Daily Peloton
Velo News
Cycling News

Photo credit: Velo Images

Time

USA – One frequently cited reason that women don’t get mammograms? They are too busy. There are, of course, other reasons (pain, fear, lack of insurance) but time was a recurrent theme in a recent Journal of Women’s Health article.

It can be scary. It can be costly. It can be painful, all of those things are true. But typically, they don’t take any longer than the average lunch hour. Some women find that the task is far easier if they make a lunch date with friends and go as a group – the support is a great trend and encourages others to try the same idea.

We find ourselves so willing to take a few extra minutes to run and grab that cup of coffee in the morning, or go squeeze in time for reality TV at night. Why not do something that could be a lifesaver for you or your friend?