I Choose Hope

Totally Baldacious

Just when we couldn't love the LLS any more than we already do... they put together a campaign called Totally Baldacious for those patients that are about to, or have recently lost their hair due to cancer treatments.  I'm honored to be their honored patient, once again.

LLS Totally Baldacious

Spread the work to anyone you might know that could use a little lift or inspiration from a tough ride on the cancer road.

Smooth Sailing

After follow up tests over the last week ... I'm OFFICIALLY in the clear but have to keep an eye on things closely. Thanks for all positive thoughts and good energy. So much appreciated. xx

"Breathe in through nose. Out through mouth."

Those are the words of the very wise Mr. Miyagi of the Karate Kid.  That movie was on this past weekend, and those words were in my mind this morning as I went for the (dreaded) 6 month PET/CT scan. 

Are needles getting smaller?  Or was the tech just especially skilled at inserting them?  She says "Take a deep breath, you will feel a poke" and I then I felt nothing.  This is not a complaint.

If this scan is clear, which it should be (touch wood), I am beginning to debate how often to continue getting them.  Nice to know that monster cancer is not inside of me, but hate the idea of powerful scans/xrays zapping me every six months.  Long vs. short term benefits -- I'm just about to the point of the scientific coin-toss method to decide.  Doctors advice is kind of ambiguous.

Will update once I get the word from the doc. 

Hi?

Testing.  Testing.  One.  Two.  Three.  Is this thing still on?  Since my last post - seven months ago, really? - nothing terribly exciting to report.  Oh, well, one great thing -- I had a clear PET back in July.  I think I started reporting that stuff more on Facebook than here.  I have since "quit" the Facebook.  Too much info.  

A PET scan six months ago can only mean one thing.  That the next one is coming up.  I have to schedule it for January I guess.  I'm actually not obsessing over it.  Yet.  I hope it stays at a nice non-obsessed level.

I had a great social visit with Dr. Priya over Thanksgiving.   The chemo lounge has had a complete facelift since I was last there.  It was nice before, and now it is super nice.  Priya and I had a great time catching up and looking back to nearly three years ago when we first met.  I still can't believe I thought she was "only the nurse" when she first walked in.  Shame on me!

Wishing everyone a holiday season that is peaceful, festive, and filled with everything that is your favorite.

Sawadee from Bangkok, Thailand

Sawadee!  (Thai equivalent of "aloha" meaning hello or goodbye.)

 

I took this photo a few mornings ago at sunrise.  After a long, busy week in Bangkok, we flew south to Koh Samui, a resort island south of Bangkok.  We spend a few days relaxing and eating more Thai delights than I'd like to remember.  If I have one more bowl of coconut lemongrass soup...OK, one more.  It is so delicious.

While my family and friends are convinced I am here on vacation and not really working, I assure you I am.  The real purpose of the trip was to visit a girls orphanage northwest of Bangkok.  We visited about 300 girls at the orhpanage - ages 2-17.  These girls have been abandoned by their parents/families and some have been rescued from the sex trade and prostitution.  To see the empty faces of young girls that only know a life of heartbreak and pain was sobering.  We wanted to make them smile.  Let them know someone cares for them.  That they didn't do anything wrong.

The little girls were easier.  They haven't lived years of pain as they are quite young still.  Seeing their eyes sparkle and their bodies jump up and down at the sight of their new bicycles was a thrill.  They've never had a toy in their life.  To see them put on sneakers 3 sizes too big and say "it's perfect" was humbling.  They were grateful for anything.

This will be a long term project as a dormitory is built for the girls. It is so over crowded at the moment some of them sleep in their classrooms.  I'm proud to work for an employer like Nike that is focused on giving to others and innovating for a better world.  At the moment, I cannot post any photos of the girls and the orphanage, but they will be forthcoming.

Selfishly, one of the best things for me the day at the orhpanage was something I realized the day after we met the girls.  I realized I finally experienced something that other cancer survivors told me about.  Something Dr. Priya promised would eventually happen.  The day that I wouldn't think about cancer one single time.  For an entire 24 hours the world of cancer was not a part of my life, and it felt wonderful.  I think the lesson for me there is crystal clear.

A Few Updates

It has been a while.  No excuses.  I guess in the best sense of the word, life is busy, and not with cancer.  Meaning, it remains in hibernation and I am careful not to wake the beast.  Cancer can stay down (forever) for that long winter's nap and never wake up.

I had a check up last week.  Weeks leading up to it I had the usual nerves, to me everything was cancer, including an ingrown hair that became a "lump".  Everything was cancer to me, until Dr. Hayes Lattin told me it wasn't.  He even managed to deliver a straight-faced "it's totally normal, Amy" as I described all of my unusual things I thought might be cancer.  I said, "Hey, I know I am crazy."  

Next up is the bi-annual PET/CT scan and that will take place this summer.  Not typical summer vacation plans...you know, going to the beach, Lake Tahoe, Disneyland, the nuclear medicine wing at the hospital.  Doesn't have quite the same ring.  I could wear a bikini if I wanted though.

Tomorrow I am going to Thailand.  It is work trip but I think there will be some time to see some sights.  Should be a memorable and life-changing trip.  Will post more on that later.....

After a stiff cocktail of R-ICE (chemo regime for her relapse), DC Jen reach remission - again - and is now waiting for her stem cell transplant.  Her blog is awesome, I highly recommend it!

Francesca lives in the US again - NYC - just in time to get her dad "pappa" started on chemotherapy.  Will cancer ever leave us alone?  She got in to the SF Marathon so she and I will wreak havoc in San Francisco in October.  Fun fun fun.

Hope you're enjoying spring.  I got a new camera lens, and poor Riley is the subject of some new photos.  Isn't she cute? :)

RUN LIKE A GIRL

Hello!

The Nike Women's Marathon will take place in San Francisco on October 18, 2009.  This is an event not to miss.  It is the most beautiful and inspiring marathon course in the world.  You begin in Union Square at the corner of Niketown / Tiffany & Co.  Not too shabby.  From there you snake through the financial district to run along the embarcadero, wave to Alcatraz, marvel at the Golden Gate Bridge...and then you hit a hill as you enter the Presidio.  It is a challenge but nothing you cannot handle, because you are strong and nothing is going to stop you.  Always remember as you climb that hill that you will get to go back down.

After climbing up and up, you finally hit the beautiful Great Ocean Road and you head down the highway, as promised.  A quick loop through Golden Gate Park and you have now completed a HALF MARATHON - 13.1 miles.  

If that doesn't feel like enough and you want a little more, you can exit the park, and head south on the Great Ocean Road to take a lap around Lake Merced, then head on back.  You have now completed a FULL MARATHON - 26.2 miles.

Either distance, running or walking, you will receive a uniquely designed Tiffany necklace handed to you by a handsome San Francisco fire fighter dressed in a tuxedo.  Not convinced yet?

Mile 12 is brought to you by Ghirradelli chocolate.  CHOCOLATE is handed out to all.

Gents, are you man enough to tell your friend's you're running a "women's marathon"?  Well, it is for the boys as much as the girls.  Especially if you like the thought of being one of about 1,000 men surrounded by 20,000 women all weekend. :) 

If I didn't have you at hello, or a handsome fire-fighter, or chocolate, this is my last shot...

All money raised for this amazing event benefits the Leukemia & Lymphoma Society.  As an almost 2 year survivor of a scary stage 3 non-Hodgkins lymphoma diagnosis, I believe in giving back to organizations like LLS that fund life-saving research, patient care, and programs that people like me truly benefit from.

Below is the link to sign up for the lottery.  It closes on March 18th.  If you don't get in via lottery, there will be another option which I will share later...  Thank you for considering this and I hope to see you in San Francisco in October!

Much love, Amy

https://www.signmeup.com/site/reg/register.aspx?fid=SG2V6K7

Can-niversary

Yup, welcome to the day I found out I had cancer two years ago.

"What we see is consistent with lymphoma," Dr. Margie Lim said.  "Amy, you have cancer."

GULP.

I remember what I was wearing.  I never wear that shirt anymore, but it still hangs in my closet.  I remember exactly where I was driving in my car.  I was on the 92, heading to work, and I missed my Ralston Street exit because I was, well, distracted.  So I stayed on until the 101 and went south.  I skipped the EA exit because I went right to her office.  The receptionists knew.  When else do you not have to wait in the waiting room an annoyingly long time?  They escorted me right in.  I didn't even get weighed.  Bonus!

Eventually I got around to making some phone calls.  They started something like "Hey, are you busy?  I have some news and it isn't very good."  And then I tailored them to each individual person.  Some were sad, some had "WTF?" laughs, and some scared people.  I was pretty numb.  I attribute that to the shock. 

Two days later I met her.  The woman that saved my life.  We still stay in touch, even though she is not my regular oncologist anymore.  You're not really supposed to go out and be friends with your doctors, but in this case, how can we be prohibited contact?

We emailed today:

From: priya chakravarthi
Date: Thu, Mar 5, 2009 at 2:10 PM
Subject: Re: Hi
To: Amy Bartlett [email protected]

Dear Amy,

 

It is wonderful to hear from you.

 

I think about you a lot too. In fact I share your story with a lot of my patients now. It does seem like a I have so many young patients with stage 3 large cell lymphoma these days. I share your story of strength and how you are now giving back. It has given courage to lot many of the patients.

 

So thank you.

 

Hope to see you soon sometime. 

 

Take good care.

 

Priya

 

On Thu, Mar 5, 2009 at 1:13 PM, Amy Bartlett <[email protected]> wrote:

 

I was diagnosed two years ago today.  I met you on March 7th, 2007.   Thank you for saving my life.  I think about you all the time and am grateful for you every day.

Thank you never seems like enough...  Amy

Today, I'm reminded of my blog friend, Jen.  It is her 35th birthday and she spent it in the chemo lounge.  Not an ideal place, but she sure did it in style.  It gave me ideas if I ever have to go back.  Her new chemo to prep for her stem cell transplant is called ICE so she blinged herself out with a diamond tiara and lots of "ICE".  Bravo, girl.  Jen did tell me that since statistically one of would eventually relapse, she's taken the hit for me and our other blog friend, Francesca.  What a team player.  We have never met in person, but she feels like a friend in every sense of the definition.  Her blog is very real, and always very witty.  She has a young daughter, and after explaining to her that mommy would be at the doctor a lot, etc. she asked her "Do you have any questions about mommy's medical stuff?"  Her daughter deadpans this one:  "Yes.  How do I get some more candy?"

Shin, another blog I discovered at the recommendation of Francesca, recently died.  She is this exraordinary woman that died of breast cancer after beating it once then it came back with a vengeance.  Her story is incredible, and requires a lot of tissue, but well worth the read.  The videos of her eulogies are more than tough, but it sure makes me wish I had known her.

I don't have much else to say that hasn't already been said.  Kiss your loved ones.  Be thankful for every day you have.  And keep fighting against cancer.  In our lifetime, I want us all to be able to ask this question:

"Do you remember when people used to get cancer?"

Hearts

First things first, Happy Hearts Day.  Valentine's is a little too Hallmark for me, and maybe because my Valentines were sent to me by a 5 and almost 3 year old, and some 1 years old twins affectionately known as Cupcakes.  But I like to celebrate hearts on February 14th which allows me to wish happy hearts for everyone.  Feliz corazones a todos!

Now its down to business.

I haven't really been around these parts lately.  Like the movie, I guess I am just not that in to you.  I haven't had anything to say because I think I have entered a phase where I am trying to pretend I never had cancer.  As if cancer were written on my life with a dry erase marker and I was simply clearing off the board.  Goodbye cancer.  I had a clean PET Scan in December and don't really need to think about you until the spring.

But dammit it is impossible to forget.  It just feels like it is everywhere.  Is it because I have a heightened sense of awareness about it, or is it really rearing its ugly head more than it did in the past?

So as the LiveSTRONG manifesto says "Cancer may leave your body but it will never your life" ... cancer has not nor will it ever leave my life.

If you've been reading my blog, you will know of "DC Jen" - named because she lives in DC and goes by Jen.  I am so creative sometimes it is scary!  Jen hit the significant milestone of remission late last year.  After many ups and downs, a long summer of chemo and radiation, she made it.  Arms up she ran through the finish line and was declared to be cancer free.  Her hair was growing back and she was thinking about going back to work.

Cut to this morning.  Francesca Facebook'd (wow, that's a verb now?) me to ask if I had read my ichoosehope gmail account lately.  Gulp.  My heart dropped and I logged in immediately.  In my ineffective attempt to close my eyes and not see cancer, I had stopped checking this email account regularly because it reminded me of everything related to chemo, radiation, and illness.  My hopeful filter was lost.

DC Jen had written to me & Francesca about a week ago telling us she had a lymph node that was "lit up like a tree" in her recent PET Scan.  I read the email thread between the two of them as F provided support, and J talked about her upcoming surgery, and then it even got to the results.  Where was I?  I felt terrible for not being present to J while she faced this.  Granted, we are only on-line friends, but the 3 of us have a cancer sisterhood that is really strong.  I think I have shared things with them that I haven't with anyone else.  They get it like no one else in my camp.

Jen is preparing for a Stem Cell Transplant now.  SCT.  How can this be?  I don't know how she feels because I have not had a relapse.  Statistically, I will have one, some day. My cancer was discovered in an advanced stage so it really is only a matter of time.  Will it be in 5 months or 5 years?  Longer?  Shorter?

The trouble with cancer never leaving your life is that it is a battle with how paranoid I allow myself to be.  Am I obsessed with it?  Not really.  Do I think about it every day, more than once?  Yes.  Can I joke about it and be light hearted?  Totally.  When my sense of humor is gone, put a fork in me.

But Jen's news reminds me that I am running from something.  Am I running fast enough?  Or is it going to catch me?  I try my best to be healthy and live a better life, but I am by no means perfect.  Living in Portland makes me realize that I took everything about California for granted while I lived there.  Sunshine, crazy people in San Francisco, family, friends, ocean, mountains, wine country....  In the same way that I took for granted a life that didn't have a cancer diagnosis attached to it.

If you've never had it, you're so lucky.  Be good to yourselves and don't take anything for granted.  You never know how long you're going to have to enjoy it.

The Dooze

I am a loyal reader of The Sports Guy's column on ESPN.com.  He always has the perfect way to integrate a pop culture reference to a sports story he is writing.  If you're not a fan, I recommend you check him out, especially if you're a sports fan (Bostonians will especially love him).

This morning, I read his most recent column.  Prepared for a laugh about something likely related to the Super Bowl, I was surprised to read about his dog, Daisy, affectionately known as "The Dooze" in his family.  My usual laughs - actual "LOL" moments, not fake LOL when you don't even audibly laugh but simply type the letters LOL - were replaced with tears.  Real ones.

I'm sharing it because it really touched me...how cancer can touch our lives through people, and in this case, with the furry four legged members of our families. 

http://sports.espn.go.com/espn/page2/story?page=simmons/090122

It reminded me of when I was diagnosed with lymphoma.  Nearly two years ago...wow, how time flies.  My version of The Dooze was 5.5 lbs of pure puppy joy, my sweet 6 month old Maltese, Riley (pictured below, today - age 2 years old).  Just like Sports Guy's other dog, Rufus, my fluffy little bunny, Riley just knew.  She had been needier than usual, always wanting to be close to me.  I thought I had just gotten an especially loving dog.  When I came home from the doctor's office on that fateful day, I finally fell apart, crying.  There was Riley, perfectly content just being cozy with me and licking my hands as they had my salty tears on them.  She wasn't being a frisky puppy that day.  She was calm, sweet, and exactly the friend I needed that day, that moment, and now in that memory.

Mickey Rourke recently thanked his dogs in his Golden Globe acceptance speech for Best Actor.  It's true that sometimes dogs become exactly what you need at the moment you need them the most.

Here's to all of our pups...with us, and those that are on the moon, with The Dooze.