How You Live

Hello beautiful people of the Internet!  My name’s Rob Rufus and I work with Sarah and How You Live.  Minor celebrity that I am, she asked me to be a “guest blogger” on her site.  I have never blogged before so if I screwed up, give me a break!

When I really think about it, I became involved with HYL the exact same way I get involved in anything: girls.  You see, I volunteer with patient services at the Vanderbilt-Ingram Cancer Center, and one day after a riveting game of Scrabble with a 70 yr old patient, I spotted an Oncology Infusion room filled with a group of smokin’ hot girls!  I immediately stopped by their room to see if I could get them anything, and received a resounding “nope, thanks!”  Just my luck.  Although, honestly, I am thankful I was spared sinking to the level of attempting to pick up girls at a hospital!  Can you even imagine?  On the list of guys women fantasize about I think “hospital volunteer” is somewhere in between accountants and professional Chess players.  But anyway, back to my blog…

            I am also involved with the Lance Armstrong Foundation—mainly trying to raise awareness and get the government to put more money towards cancer research.  At a LAF conference this past summer, I ran into one of the same girls I saw in the hospital that day, aka Sarah, and we re-introduced ourselves.  Back in Nashville, we met up and she told me a little about How You Live, an organization she was in the early stages of starting.  She explained that HYL would be a way to help young people with cancer, and more so, to help PREVENT young people from getting cancer. I told her I’d be down to help out however I could.

            The issues HYL deals with are close to my heart because I, too, am a young cancer survivor.  When I was 17 yrs old, I left school one day because I had a recurring cold and cough.  My Doctor thought it was pneumonia, but after performing a chest x-ray they realized it was actually a huge germ cell tumor in the middle of my chest!  Needless to say, I didn’t know what to do.  The next few years were filled with chemotherapy, radiation, an entire lung removed, one scary as hell relapse, and lots of hospital rooms.  Hard times came and went, days rolled into days, and here I am now… almost eight years later.  I am 25 yrs old.  I’ve got a missing lung, a weak heart, a wrecked back, and burnt up nerve endings.  But like I said, here I am.  Every year there are 10,000 young cancer patients who can’t say that, can’t say anything.  How heavy is that?  10,000 a year, so I can’t complain about being a little beat up.

            There is no way I can cover everything that happened during that time, or how I got to where I am now.  But what I can tell you is that it wouldn’t have been without help.  I had great Doctors, family, friends, and thank God—great health insurance.  I mean think about it: I grew up in West Virginia.  West-effing-Virgina!   If my mom’s health insurance had not allowed me to go out of state to whatever specialists I needed to see, I have no doubt I would have clocked out a long time ago.  And that is scary to think about, because I know there are MILLIONS of people (especially young people) who have either terrible health insurance or none at all!  Millions of people without help.

            The thought of anyone being deprived a fighting chance of surviving an illness solely because of financial reasons weighs heavy on my heart. I mean this is America right?  Land of hope and dreams! Kick ass cars! Apple pie! Bruce Springsteen! Girls in tight jeans!  How can our government let solely profit-based corporations be the gatekeepers to life or death medical treatment?! Did you know that if you can’t afford private health insurance and you get cancer then you have a 60% higher chance of DYING? So essentially, value of human life is literally determined by a price tag. 

            Now as a disclaimer, I’ll tell you that I am a pretty cynical guy.  And I know it’s easy to say, “that’s just the way things are” or “money talks” but I think its complete BS.  Maybe things are just that way, but they don’t have to be!  Maybe it is a broken system, but until we get it fixed there must be a way to keep people from falling through the cracks.

            Sarah shares that same passion (minus the four letter words), and that is why HYL is so rad.  It can help give people the tools they need to survive not only cancer, but also the heavy financial burden that goes along with it.  It will give people access to information, support, and financial grants that directly impact people in crisis. 

            So hell yeah!  I am really excited about the whole thing!  For one, Sarah put me on the HYL Board of Directors, which may help my hospital room pick-up lines.  For another, I think it can really do a hell of a lot of good in people’s lives, and wish there was a resource like that available when I was sick.  I adamantly encourage you to support the organization, or do something to help out.  Anything!  Because you better believe there is a lot of heavy stuff going down in this Country, my brothers and sisters, and as the great Dr. Seuss said, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”

me & mom - LAF Summit 2008

 

In a previous blog, I referenced an article that profiled young women who had battled breast cancer in their 20s and 30s.   As if chemo and radiation isn’t a beating of its own, several of them also had to deal with issues of infertility as a result of the treatment.  Infertility is one of the devastating long-term side effects for young adults diagnosed with cancer (men and women).  Risk is higher for certain types of diseases and treatments, but nearly every diagnosed young person is at risk.  I realize that this isn’t a tragedy for everyone.  Some of us never planned to have children.  But for others of us, life would be incomplete without babies of our own. 

I remember that in the moment of having to make a decision regarding fertility (ie. freeze my eggs) I was most concerned about saving my life…not preparing for child-rearing.  That was furthest from my mind.  However, months later and moving into a much healthier future, I often wonder if my life will include natural-born children.  I wish someone could have talked with me about my options when I had them. 

I wish I had known about Fertile Hope.  “Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.”  The website provides a vast amount of information and resources, including two really cool tools:  Fertility Risk Calculator and Options Calculator.  Two amazing tools to help you better navigate this issue and make an informed decision.  They also offer financial assistance for adoption, sperm banking and egg/embryo freezing.

In the big picture, I am incredibly grateful for my life, as I know you are, too.  I have no regrets about my treatment and who knows…even if I’d had the knowledge and resources about fertility options, I may not have done anything differently.  But knowledge is power, right?  Empower young adult cancer fighters/survivors with Fertile Hope. 

After all, there aren’t nearly enough people on this earth.

As always, if you know of other fertility options or have a story to share, do it here!  We’d love to hear it.

The director of the department I worked for at that time asked each of the team members to write down and submit our “Wins” for 2007–personally and professionally.  I gave it a lot of thought and was proud when I shared my goals for the new year with my boss and colleagues.  In fact, I think I remember most of them:

• Run in my first 1/2 marathon–Music City 1/2 Marathon (Nashville, TN)
• Join Weight Watchers and lose 15 pounds
• Pay off all debt (excluding student loans) by the end of the year

Those are the ones I remember distinctly…because I completed them.  And was proud.  It was the first time I remember writing down my “resolutions”  (yuck…hate that term) and making a commitment to give it my best shot. 

I did, in fact, join Weight Watchers in January and lost almost 20 pounds.  I found a training group and worked hard to finish that 1/2 marathon in April.    I also had a trainer and was at the gym several times a week.  I did a 5K in July.   You must understand….this was huge for me.  I don’t work out.  Over and over, I’ve heard it said that I just need to “find something I enjoy”.  Yeah…impossible.  If I sweat, I don’t enjoy it.  Thus, I don’t like working out.  I digress.  The point is, I was serious about this.  Along the way, I found much joy and pride in seeing gradual progress in my health, energy, and pants size.  Don’t tell anyone, but I even stopped hating the gym. 

Oh…I can’t forget to mention that I paid off all extraneous debt with the help of Dave Ramsey.  It’s true.  I was on a freakin roll! 

And then, it happened.  I got the cancer. Out of nowhere.  How ironic that the year I commit to healthy living, I am diagnosed with a disease that should only affect older, more fragile, less healthy people.  You catch my drift. 

2007 came and went.  In the most brilliant way, I finished chemotherapy on December 31 of that wonderful/horrible year.  January 1, 2008 came…and went.  I didn’t set any goals that year.  Call me crazy, but I was a bit wary of the setting of the resolutions.  Consequently, I found it to be a less memorable year. Could be chemo-brain…I don’t remember much, in general.  OR…Could it be that I wasn’t working toward anything?  Therefore, have less to memorialize?  Unsure.

This is what I do know:  2009 is a new year.  I decided I like New Year’s again.  Number one, I have a major reason to celebrate!  Every NYE, I will celebrate being cancer-free for one more year.  Two, it’s exciting to think about what these 365 days will hold.  I’m not holding my breath or expecting only good things.  Rather, I’m anticipating joys and sorrows.  Successes and failures.  Challenges and rewards.  Love and Loss.  The excitement is really not in expecting mighty victories, but in the promise of a greater awareness of God, myself and the world through life experiences that I can’t even begin to predict.  Nor do I want to (see above).

So, fellow young adults (or whomever may stumble across this blog), here’s to a fabulous year!  CHEERS!

There’s an amazing organization that you should know about.  It’s called First Descents and exists to “provide whitewater kayaking and other outdoor adventure experiences to promote emotional, psychological and physical healing for young adults with cancer.”  Seven-day outdoor adventures through the mountains and rivers of Colorado for young adult cancer survivors 18 and older.  AND…it’s completely free.  How cool is that?! 

Check out www.FirstDescents.org to learn more and to apply for the summer 2009 programs.