How You Live

As I was in the shower yesterday, I had an powerful realization.  (Epiphanies always happen in the shower!)  This exact time, one year ago, my life changed forever. 

My mom is here visiting for the weekend.  She specifically came for the Cindy Morgan, “How You Live” concert on Sunday (see earlier blog for details!).  She flew up here on Thursday.  Last year, on the Thursday before Labor Day, my mom was driving to Nashville from Dallas when she got a phone call from my doctor explaining that she had discovered a large mass in my chest.  I was to have a biopsy the next day.  What was intended to be a holiday weekend visit, turned into a two-week stay as she was with me to navigate all of my doctor visits, procedures, surgery, scans and the exhausting search for a diagnosis. 

Yesterday, we shopped, ate, visited with friends, listened to great music, enjoyed the historic announcement of Sarah Palin as the McCain runningmate, and just celebrated life!  What a difference one year makes. 

I have very vivid memories of that monumental weekend for me last year.  Waiting for important phone calls.  Sitting in waiting rooms.  Laying in a hospital bed, wondering what information was going to be revealed to me.  Asking questions–of my doctor, myself, and God.  Thinking about the next everything…wondering if it was going to be the last.  Deciding that if I have another chance at life, I would make every moment matter. 

Just one year later–the longest and shortest year of my life–My body is whole.  My questions have been answered.  And most importantly, I have my life back.  What a precious gift.   I’m grateful, overjoyed, and blessed beyond measure.  

When the date for this event was chosen, I had no idea that it would be so timely.  How sweet to be able to celebrate with so many friends and supporters, AND have my mom here again, but for a very different reason.

Here’s to another Labor Day weekend…and many, many more to come!  CHEERS!

At BB Kings in Nashville

A friend of mine invited me to go bowling with him and a few other guys.  It was the night before one of my treatments and I knew that I wouldn’t be feeling well for several days, so I should take advantage of an opportunity to hang out when I did feel up to it.

 

Mid-game, my head was itching terribly from the wig.  It even looked natural in a ponytail, so the guys had no idea I was wearing a wig, much less had cancer.  I was really uncomfortable, but I couldn’t decide what would be worse—an itchy head, or a naked head. 

 

After deliberating between my turns, I felt like I had two options: A) Take the wig off when they weren’t looking and totally blow their minds.  That could be really funny, or really disastrous.  B) Casually mention that I had cancer (how do you bring that up casually?) and ask permission to take off my wig. 

 

I went with option B.  Jeff, we’ll call him, noticed that I wasn’t drinking any alcoholic beverages and asked me if I ever drank.  I said, “Well, yeah, sometimes, but I’m kind of on an alcohol sabbatical…because I have cancer.” 

 

“Whoa.  Really?”  He asked all the normal questions…what kind?  Where is it? How long have you had it?  Etc.  So I used that opportunity to mention that I was wearing a wig…it’s very uncomfortable…I might take it off if that’s okay.  He said, “Well, since you told me first, I don’t mind.”

 

I was baffled!  Since I told you first?!  You’re not the one who’s bald!  You’re not the one who has this horrible disease!  I don’t have to ask your permission!  Of course I didn’t say those things.  And I didn’t even take off my wig.  Instead, I just took another sip of my water and regretted that I ever mentioned it. 

 

In retrospect, I totally get it.  I know that he had no intentions of making me feel awkward or misunderstood.  But that’s the thing about cancer.  It has this sneaky way of making normal situations feel bizarre and unnatural.

When I was first diagnosed with cancer, I’m ashamed to say that my primary concern wasn’t whether or not I was going to live, but…ohmygosh…I’m going to lose my hair!  I was completely freaked out by the very thought that I was going to be bald. 

 

My amazing friend and fellow cancer-survivor, Tammy, spent some time with right before I started chemo.  I asked her about losing her hair and what that was like.  She laughed as she remembered when her hair came out.  She was in the shower and it came out in handfuls.  She remembered the frustration of trying on clothes in a dressing room, her wig falling off and constantly re-adjusting it.  I was so encouraged by her light-heart and the smile she was wearing as she shared about that part of her journey.  But at the same time, I was completely horrified as I thought about what this was going to be like for me. I knew it was coming and I was dreading it.  

 

My doctor assured me that there was no way around it.  I would lose my hair.  And not only that, when it did grow back—months later—it would look completely different. 

 

I have to admit, I had pretty great hair.  It was a dark shade of brown, shiny, healthy, and I had been growing it out for some time.  I was not looking forward to watching it all go down the drain.  Literally. 

 

Once I started chemo, I routinely checked my hair to see if it was coming out yet.  Nonchalantly grabbing at strands to make sure they were still attached to my scalp.  Exactly two weeks after my first treatment, I went to the doctor for a follow-up visit.  Still had all my lovely locks.  I came home and laid down to take a nap and then…it happened.  All of a sudden, I did a routine hair-check and there it was!  In my hand.  I sat up quickly to check my pillow case and it was there, too. 

 

I had already decided that I was going to shave my head before I had to lose my hair in handfuls.  Something about hair is just gross.  I don’t know what it is.  Who wants to see a drain full of hair?  Not me.  Especially under these circumstances.

 

I called my mom.  Then I called my roommate.  They were both anticipating these calls, I’m sure.  I actually surprised myself with my composure and confidence.  I didn’t shed one tear!  Because I had thought about it so much, there was little room for the shock factor. 

 

Pre-hair situation, my friend Grant called to see if I wanted lunch from our favorite Japanese restaurant.  The timing was perfect, as he knocked on the door right as I was pulling hair out of my head!

 

“Thank God you’re here.  My hair is falling out.”

 

I don’t remember now exactly what he said, but I do recall that it was awkward and funny, as I’m sure he had no idea how to respond.

 

“It’s coming out!  See!”  Grant probably could have done without demonstration, but I was quite fascinated. 

I think it was at the end of the third day that I couldn’t take it anymore.  My then-boyfriend came over and courageously shaved my head.  I know it was harder on him than it was for me.  You know…the spanking theory. 

 

September 2007

 

 

 

 

As I write this today, I can’t help but feel a little anxiety because I have a PET scan and follow-up with my doctor in two days.  Every time I approach this marker in my recovery, I feel that way.   In treatment, my focus was on staying healthy and keeping my eye on the finish line.  Now that I’m in remission, I am doing my best to keep it away.

 

At my final appointment, I asked my doctor about the possibility of a relapse and he assured me that it wasn’t going to happen.  He put my mind at ease and I left with the confidence that I was going to be permanently cancer-free.

 

A few months later, I celebrated the Lance Armstrong Foundation’s LiveStrong Day by visiting my cancer center to encourage the patients who were undergoing treatment; The very same place I had been just a few months prior.  After visiting the main infusion area, I stopped by the stem-cell transplant clinic where Leukemia and Lymphoma patients were trying desperately to beat this disease.  I wasn’t expecting to meet so many people who were battling the disease that I had.  All of the lymphoma patients I met during my visit were having a transplant because their disease had relapsed.  But my doctor said it wasn’t going to happen!  It did for Misty.  She’s 25 and was first diagnosed at 22.  Two years later, it’s back again.  Michael’s came back, too.  He’s only 26.  I met him on the first day of his transplant.  They weren’t the only ones.  There were several strong and courageous individuals who were giving this another shot.  I was so glad to be there and cheer these amazing people on in their battle.  I hope it was encouraging for the patients to see someone who understood the disease and had successfully conquered it.  But at the same, it was hard for me.  I left feeling a bit defeated.  I was faced with the reality that I’m not totally out of the woods yet. 

 

When I make plans for the future—like the next few years—where I’m going to live or work or if and when I’m going to go to grad school, I keep considering the cancer factor.  I don’t want to move too far from my cancer center in the next few years…just in case.  I’m not sure that this is the right time to start grad school because I may get interrupted.

 

Every time I have a headache, I wonder if I have a brain tumor.  When I feel unusually tired, I’m sure that the NHL has come back.  If I have a fever or even a sniffle, there’s a good chance it’s a symptom of something worse.  I’m fully aware that this thinking is completely insane and irrational.  I have never, never been such a hypochondriac!  It’s actually quite annoying.

 

Once you’ve had cancer, I wonder if you ever feel completely free.  At this point, I feel as though I’m living from scan to scan, each time feeling a bit more victorious.  And each time ever more grateful for the life that was given back to me. The truth is, everyday is a gift.  Tomorrow was never promised to any of us.  I could get killed in a freak accident and that would have nothing to do with cancer.  Stranger things have happened. 

 

When I feel the onset of anxiety about the future, I have to stop myself and remember that today I don’t have cancer.  Tomorrow is a different story.  But I don’t worry about tomorrow.  A really amazing man once said, “Don’t get worked up about what may or may not happen tomorrow. God will deal with whatever hard things come up when the time comes” (Jesus in Matthew 6:34).  Cancer or no cancer, the wisest thing we can do is live for today. 

Last week, I experienced an amazing program that was truly life-changing.  Dream Street, an organization in the L.A. area, brought 24 young adult cancer survivors (18-25) to Canyon Ranch in Tucson, AZ for seven days.  Our days were packed with activities, classes, FOOD, golf, tennis, spa treatments, and of course….focus groups (aka group therapy).  Oh, and crafts!  My personal fave.   

At the beginning of the week, I was very skeptical.   I didn’t really want to claim the title “cancer survivor” because as much as it is a part of my life, I’ve never wanted it to be my identity.  I wasn’t very comfortable embracing the role of survivor.  Kind of ironic since I want to give my life to cancer awareness and advocacy.  When I talk about it in a generic sense, or speak on behalf of young adults, I’m proud.  But when it’s just about me…that’s a different story. 

However, it only took me a day or so to change my thinking and be so humbled and so very proud to be among a group of profoundly amazing individuals.  Their stories were powerful and inspiring.  I was reminded of how truly strong and resilient the human spirit is. 

If you are a young cancer survivor, check out Dream Street and apply for the 2009 Canyon Ranch program.  You will most definitely be challenged, refreshed and inspired!  And will meet people worthy of remembering for the rest of your life. 

All of my Dream Street friends: What was the most memorable/meaningful part of the week for you?  Leave a comment!

Ran (from Israel) and Micael (from Ethiopia)...my brothers from another mother.

Jane, the Journal Lady, and my "Life Arrow." She's the best.

Most of the girls relaxing at the Jacuzzi!

 

The AZ mountains. My camera could never do it justice.

check out SeventyK - the adolescent and young adult cancer bill of rights.  sign (it’s so easy) and spread the word!  why?  because…

“There are approximately 70,000 people aged 15-39 diagnosed with cancer every year. For over two decades there has been little or no improvement in survival for this age group. By signing this bill, you are supporting the Adolescent and Young Adult Cancer Bill of Rights to be established as a standard for care to meet the needs of this underserved population.”

So, the name of this blog is How You Live.  Which also happens to be the name of the organization that I’m launching really soon (support for young adults affected by cancer…duh).  Which also happens to be the name of a song called “How You Live.”  Actually, it’s really not so coincidental. 

In the fall, near the beginning of my diagnosis/treatment, I had breakfast one morning with my dear friend, Andrew.  As usual, he had a song for me to listen to before we parted ways.  I got in the car and he played a song called…..you guessed it:  ”How You Live”.  I couldn’t believe that a song could so beautifully communicate everything that was in my heart.  Everything I didn’t really know how to say.

The song was recorded by a group called Point of Grace and after winning country recorded song of the year at the 2008 Dove awards, “How You Live” has recently been released to country radio and is doing awesome.  The writer is Cindy Morgan, who also won Songwriter of the Year at this year’s Dove’s.  She’s amazing.  This is from her bio:  “A songwriter’s songwriter, Morgan has garnered eighteen number one hits that include ‘Listen’, ‘Praise the King’, ‘Take my life’, and ‘I Know You’; as well as Point of Grace’s recent hit ‘How You Live’.  Morgan has garnered several Dove Awards and Billboard Music Video Award nominations. Her songs have been recorded by luminaries such as Michael W. Smith, Point Of Grace, Avalon, Rachael Lampa, Brit Nicole, Mandisa, The Martins, Michael English, BeBe Winans, Sandi Patty, Jaci Velasquez, Mark Schultz, John Tesh, and Natalie Grant.”

Back to Andrew… being the extremely generous soul that he is, he wanted to do something to help with my medical bills and expenses incurred throughout my illness.  Long story short, CINDY MORGAN, is doing a benefit concert for yours truly on August 31.  I’m beside myself because the writer of the song that has become my life-song is going to be there!  And not only that…she’s going to play the song and I’m going to sing it!  How cool is that?!  Also performing: Andrew Greer (it was his idea, after all) and another precious friend, Sara Beth. 

It’s very odd to be inviting you to something that’s going to ultimately benefit me, but I would love for you to come if you live in town.  Only because all of the artists performing are so amazing and I know it’s going to be such an uplifting evening. 

When: August 31at 6:00 p.m. (5:30 doors)

Where: Oak Valley Baptist Church 1161 Lewisburg Pike, Franklin, TN  37064.  615.794.7403.

Much Love-

 

When I lost my hair, I didn’t have to go it alone.  No, no…I had a dream team of guys (youth staff at Christ Church) that took the plunge and shaved their heads with me.  Check out the video…

Hello to my new friends and old friends.  I’m so pumped about this blog and SO excited that you’re here!  Many thanks to Levi Kennedy (www.levicole.com) for setting up howyoulive.org.  We have big plans for a full-blown site in the near future.  Stay tuned.

The more young people I meet, the more excited and passionate I feel about raising awareness and generating support for young adults with cancer.  I truly hope that howyoulive.org can be a resource in educating the young adult masses (!) about the risk of cancer and what we can do about it.

I’ll be posting links to other blogs and sites as I find them.  Check them out.  They’re worthy of a visit….or two or three. 

All the best-

sarah