Julie’s Blog

I never thought a cancer diagnosis could be good news, but that is just what it was, well, relatively speaking.  The Monday before Christmas, my dermatologist told me I have melanoma in situ (Stage 0), the earliest stage possible and the best melanoma diagnosis you can get, if you have to get a diagnosis in the first place!

Earlier that morning, I received a call from her office asking me to come in to speak with her and to bring someone with me.  Well, obviously they weren’t planning to give me good news because 1) it’s a very busy office and they fit me in immediately and 2) you don’t need company to receive good news.  For the two hours after that phone call and before my appointment, I thought the worst.  I hung up the phone and called my mom crying.  ”How could this be?”, I wondered to myself.  ”How could God give me cancer again?  How can he pile my family with sadness upon sadness?”

I called my boss crying.  I cried to my coworker.  I felt nauseous and hungry at the same time.  Then I reasoned with myself.  ”OK, Julie.  You’ve been through similar situations before and there is nothing you can do to change this medical fact.  Deal with it and move forward.”

I am familiar with melanoma through friends and acquaintances.  I have read about it online.  I knew when I walked into my doctor’s office that melanoma was one of the most aggressive forms of cancer there is, so as soon as I heard the words “in situ” and “Stage 0″, I was relieved.  The fact that she told me I had melanoma went out the window at that point because I had prepared myself for the very worst.

In situ literally means “in position”.  The malignant cells  have not metastasized or spread to any other part of the  body. Pathologists determined my diagnosis after analyzing  a suspicious mole on the inside of my right pinky toe (see  photo).

I go in this week for surgery to remove the margins, but that will be it…no chemo, no radiation.  Is it strange that I’m looking forward to the surgery so I can have some down time?  I always said one of the nice things about being a patient was that no one expected anything of me.  Not that I want to be a patient…I would much rather live with the stress of trying to fulfill expectations than face the more critical fear of life and death.  Nevertheless, I know how to milk cancer and recovery pretty darn well at this point!!  :)  I’ve already booked my spot on the couch next week and I’ve also requested a homemade banana milkshake.  I’m trying to think of what else I’d like to be spoiled with…any ideas?  I’m looking forward to cuddling with the pups and watching “Law & Order”, “House Hunters” and Lifetime.

The surgery is pretty straightforward.  The general surgeon will remove the margins (they told me this will take about one hour) and then a plastic surgeon will fix the area with a skin graft (having a little fat taken off of my thigh is kind of like a bonus!).  That part will also take about an hour.  Although they said I’ll feel uncomfortable, I won’t have a prolonged recovery.  I just need to relax a few days and that’s that!

So 2012 begins with a small hurdle, “small” being the key word.  They say melanoma in situ is pretty much 100% curable.  I don’t like using the word “cure” and “100%” together though because I feel like it’s flirting with fate.  It has a very high cure rate and I am so thankful my dermatologist noticed the spot.  Now I’d like to climb up onto my soapbox and tell you to make sure you do a monthly skin check.  Don’t forget to check between your toes and on the bottoms of your feet.  Check your head, your bum, every inch of your skin.  Make a yearly appointment with a dermatologist, always wear sunscreen (even in the winter, even if you plan on being inside most of the day).  Just wear it.  Slather it on your feet when you wear sandals and on the bottoms of your feet if you cannot live your life without sunbathing.   And for my final soapbox request, I ask you to watch this video and pass it on.

They told me my treatment for leukemia made me more susceptible to other cancers such as breast, thyroid, brain and skin.  Somehow that just doesn’t seem fair, does it?  Ironically, the same week I found out I had melanoma in situ, the Huffington Post published this article.  They must have ESP!

I’ll try to pull myself away from tv and milkshakes long enough to keep you apprised of how I’m feeling.  I know I’m a delinquent blogger, but that’s just how I am!  I’ll write when I write and you’ll just have to wait in suspense. 

Lots of love,
Julie

The house is silent except for the gentle clicking of the grandfather clock and the soft hum of the computer.  Photos of Ronnie are strewn around the table and I’m supposed to be working.  I am struggling to focus.

Never have I felt as alone as I did when I sat with my parents in the funeral home, providing information for Ronnie’s death certificate and making plans for his cremation.  It seemed to be such an intimate moment, and I couldn’t help but think of the parallels between Ronnie’s birth and his death…so much formality:  “What is his full name?  Where was he born?  What is the father’s full name?  What is the mother’s maiden name?  What is his social security number?”  Almost 36 years ago, my parents filled out paperwork for his birth, and it was unbelievable to us that we were making plans for his funeral.

I looked around at the various decorations advertised for coffin enhancements:  a garden shovel and flower with the words “Mom”, a fish and bait set with the words “Dad”…it felt so commercialized…then my dad spoke the words we were all thinking:  “This is unbearable.”  All I could think of was “how does anyone ever get through this pain?  How do we continue with our lives?  How can I possibly live through the death of all those I love?  How will I ever, ever feel happy again?”  I realized that  ultimately, each of us is completely alone and the thought terrified me.

I suppose the terrible pain of death is the price we pay for loving so intensely.  Although you are rewarded in life with moments of incredible joy and unforgettable memories, the death of someone you love rips out a piece of you and somehow you are expected to move on.  I was so angry at the medical personnel in the hospital whose lives were unchanged by Ronnie’s death.  How could they sit at their computer and do their work as though the world hadn’t forever altered?  How could they joke with each other when they were surrounded by illness?  I tried to stop myself from these strong feelings of disgust, but I accept it now as part of my mourning.

I will be jealous of those who laugh easily, and I will be angry with God for dealing my family more than what I believe is our fair share of heartache…not that there is a fair share.  I understand that in my mind, but my heart will never comprehend.  I am incredibly grateful for the many wonderful memories I have, but the tragedy of his loss dulls my appreciation for life’s beauty and happiness.

I found this quote somehow helpful in creating perspective about life and loss:

“Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.” ~Robert Brault

I just keep thinking of Ryan Darby, Boy of the Year, who so wisely stated “Sometimes you have to do things you don’t want to do.  Even if you don’t want to do it, you have to.”  My family and I, along with all those who knew and loved Ronnie, do not want to continue our lives without him, but we do not have an option.  We will live our lives to the fullest in honor of Ronnie, and his memories will always bring comfort.

Ronnie Matthews
September 7, 1975-July 25, 2011

Good morning, everyone!  Happy Friday!!  I’m sitting here at one of my very favorite places.  I’ll give you a couple hints and we’ll see if you can guess:  I’m enjoying a free vanilla coffee, I’m now on my second free donut (and I don’t pick the plain ones…first it was chocolate with cream in the middle and now it’s one with chocolate frosting and sprinkles).  I’m surrounded by wonderful light, a little bit of motivating music and (and here comes the big hint, folks), the building is full of cars…If you don’t guess this one then it’s clear you have not been keeping up with my posts! 

I am indeed at the Volkswagen dealership!!  Good job to all of you who guessed it, especially if you guessed it before I dropped the mother of all hints.  You know me well and you are a loyal Julie’s Blog reader.  Sorry, there’s no prize for guessing, just the satisfaction of knowing that you have a good memory.  :)  I’m a little irritated right now though because there’s a lady cleaning the showroom floor and she keeps shaking out her mop which makes this obnoxious noise…she is ruining my experience.  I won’t let it deter me though…I might just have to throw something on her from the balcony above.  hahahahahahaha I’ll blame the quiet fellow at the table next to me.  He obviously doesn’t know all that VW has to offer…he’s not even eating a free donut or drinking a free coffee.

Come to think of it though, those really aren’t free at all.  I’ve dropped a pretty penny here over the years so really, coffee and a donut is the very least they can do!!!  Speaking of a “pretty penny”, don’t you wonder where that phrase “pretty penny” came from?  I googled it for you, you know, just in case you really wanted to know.  Apparently it was first used in 1768.  The word “pretty” also means “considerable”, thus a pretty penny means a lot of mullah.  By the way, I just went to get some water and I noticed the other guy does indeed have a coffee with him so he’s learned of some of the benefits of being a VW customer.

Geez…I feel like my writing is totally scattered today.  I apologize, but I have lots running through my mind!  I’m thinking about the campaign…pretty much, I think about that morning, noon and night.  It feels as though it’s a second full-time job.  I really am enjoying it, but it is definitely stressful.  I come home after work, pick up the computer and work late into the evening/early morning hours planning, e-mailing, social networking and organizing.  Sometimes I worry that the pressure will cause the leukemia to return.  That probably sounds incredibly dramatic, but it’s…damnit!  I can’t finish my thought because she keeps shaking that stupid mop!!  Doesn’t she know I’m trying to get stuff done up here?…anywayyyyy, as I was saying before I was so rudely interrupted, it sounds dramatic, but I bet it’s a pretty common phenomenon.

Everyone worries about the effects of stress.  I think for cancer patients, you always wonder when your cells decided to betray you and why.  Was it a combination of factors?  Were the cancer cells always there, lying dormant until some external factor triggered the uncontrolled multiplication?  I know I am now JuLaura, but what if there’s something in my body just waiting to morph her healthy cells into leukemia?  What if forcing myself to stay up late, to stare at the computer for hours, to put off walks with the pups and swims at the pool is sending a message to my body that now might be a good time for any dormant cancer cells to spring to life?  I know we only have six more weeks and chances are I’ll be just fine, but I think it’s interesting that I deal with stress so differently now.  Instead of simply dealing with it and moving on, I worry about it and what it might be doing to my body.

Sooooooo….last week I was nervous to go camping and whitewater rafting because I knew it would be one full weekend where I would not get anything done for the campaign.  But you know what?  It was actually the very best thing I could have done.  I totally unplugged.  Never before have I been so happy when my phone died.  I spent every waking and sleeping moment outside, I sat my stressed out butt on a raft and paddled through class IV and V rapids (without falling out, thank you very much!), I laughed out loud, I met new people, I soaked up the rain and the sun, enjoying both equally.  I roasted marshmallows and looked at the sky, I ate my meals at a picnic table and I fell asleep to a symphony of bugs.  Honestly, I couldn’t have asked for a better getaway.

I’m just gonna go ahead and be totally cheesy right now…many times on the rafting trip, I thought about Garth Brooks’s song “The River” (I couldn’t find Garth’s version, but I like this one too!).  I’ve always loved the song, but on the trip I just kept thinking “Wow, that song is so true…going down a river is just like living life!”  Each time we came to a big rapid, Joe (our awesome guide) would tell us about what was ahead and where we should swim if we fell in.  When we first got the glimpse of whitewater, my heart started racing, and I concentrated on paddling.  I told myself “there’s no turning back now!  It’s not like I can say, ‘you know what, Joe…I don’t feel like doing this rapid…it’s a little too big for me.’”  Everyone in the raft relied on everyone else to keep the boat rightside up.  Mostly, we looked to Joe who was quite calm with a raft full of first-timers.

There is so much in life that we simply can’t control and facing it head-on is the only way to handle it.  Of course you want to avoid the hydraulics or “holes” when possible (these occur when the “water falls over a ledge, rock, log, or other object. When the water falls off this object, it picks up speed and when it hits the water below, it rolls back on itself, creating what paddlers call a ‘hole’” (from the very handy Answers.com).  I love analogies, I love cheesy quotes and I love sharing them with you.  Below are the lyrics to “The River”.

You know a dream is like a river
Ever changin’ as it flows
And a dreamer’s just a vessel
That must follow where it goes
Trying to learn from what’s behind you
And never knowing what’s in store
Makes each day a constant battle
Just to stay between the shores
And I will sail my vessel
‘Til the river runs dry
Like a bird upon the wind
These waters are my sky
I’ll never reach my destination
If I never try
So I will sail my vessel
‘Til the river runs dry
Too many times we stand aside
And let the waters slip away
‘Til what we put off ’til tomorrow
It has now become today
So don’t you sit upon the shoreline
And say you’re satisfied
Choose to chance the rapids
And dare to dance that tide
And I will sail my vessel
‘Til the river runs dry
Like a bird upon the wind
These waters are my sky
I’ll never reach my destination
If I never try
So I will sail my vessel
‘Til the river runs dry
There’s bound to be rough waters
And I know I’ll tke soome falls
With the good Lord as my captain
I can make it through them all
And I will sail my vessel
‘Til the river runs dry
Like a bird upon the wind
These waters are my sky
I’ll never reach my destination
If I never try
So I will sail my vessel
‘Til the river runs dry
Lord, I will sail my vessel
‘Til the river runs dry
Yea

Kinda makes you want to go whitewater rafting, doesn’t it?  I personally cannot WAIT to go back!  And Class VI was a wonderful company.  We are thinking of heading to WV to do the Gauley River in the fall with an overnight rafting trip…anyone care to join us?  You will after you see the photos below!

“To the lost man, to the pioneer penetrating a new country, to the naturalist who wishes to see the wild land at its wildest,
the advice is always the same: follow a river.
The river is the original forest highway. It is nature’s own Wilderness Road.”
- Edwin Way Teale

I hope everyone is doing well.  Thank you for your support, as always.  As much as I whined about the campaign in this post, I am really enjoying the challenge, and you make my participation possible.  $50,000, here we come!!!  By the way, did you know that once we hit the $50,000 mark, we can name an LLS research grant?  I already have a name picked out, but I can’t share that with you unless we meet our goal so help pass along the word.  Share my blog,  my Facebook campaign, YouTube, Twitter and candidate pages with your coworkers, friends and family and let’s ROCK THIS THING! 

Love ya,

Julie

PS Sorry for the shameless marketing spiel at the end of the post, but hey, you gotta do what you gotta do…this campaign is one of the wave trains that make up my river of life. :)  hahahahaha I’m such a dork!  Enjoy the photos!

PSS Although I wrote “Happy Friday” at the beginning, I didn’t actually get to finish it until Saturday…or technically Sunday morning.

It is week 3 of my Man & Woman of the Year (MWOY) campaign for The Leukemia & Lymphoma Society, (LLS) and team Growth Factor is hard at work planning events, seeking some PR and spreading the word.  It’s quite time consuming, and I’m already looking forward to less computer time when it’s all over!  I can tell you that I will never be in danger of an addiction to technology.  I mean, of course I find it convenient and helpful, but I am so relieved to unplug, to get outside with the pups and to talk to my friends and family (in real life or over the phone ).

Not surprisingly, I’ve been thinking a lot about competition lately.  I wrote the following blog post for work last week, and I thought I’d share it with you:

When I first joined Team in Training in the spring of 2007, I wasn’t worried about training to speed walk in a half marathon (13.1 miles!), but I was terrified to raise funds. Team in Training (TNT) is an endurance training program offered through The Leukemia & Lymphoma Society (LLS). In exchange for raising money for LLS, participants receive top-notch training and incredible support. I went to a fundraising workshop, I asked TNT alumni their secrets, and I sought the advice of my friends and family, but while out walking the trails, I found that my heart raced more thinking about asking others for money than it did from the speed walking! OK, maybe that’s a little bit of an exaggeration, but you know what I mean!

When you set out to fundraise for your Dig Pink event, keep your focus on what you and your team want to achieve. Look to other teams only for guidance if you are looking for ideas. In the end, it is not about the funds that are raised, but rather how the experience has shaped you, your commitment to community and your knowledge about breast cancer. And if you ever want any advice, contact me!! I’m always happy to share what I’ve learned. OK, one more quote and I swear, I won’t give you any more!!

It’s hard to keep the “friendly” in friendly competition because the very definition of competition implies one person will win and many others will lose.  As you can tell from the blog post, I’ve been feeling a tad stressed lately.  The day kick-off began, I woke up early (after going to bed around 2:30 AM doing other preparations for MWOY), went downstairs to the study and pulled up my e-mail.  All in-kind donation requests were due at 9 AM and whoever got the requests in first won the donations.  In-kind donations are donations of services or products that someone donates on my behalf, and LLS would credit me with the estimated cost of those services/products had they purchased them.

We were counting on getting the design donations (which would have been $8,000 toward my campaign!!).  I prepared my e-mails weeks ahead of time and practiced sending them out to Katie and Lori to make sure they came through OK.  Then I wrote the e-mails to send to LLS, and there they sat in my draft folder for weeks.  So getting back to the story, I woke up early and literally stared at the clock on my computer (this is after confirming that the computer goes by Apple time and should thus be synced with any and all timing devices) until it read 9 AM.  I hit the send key and waited to hear back from LLS about how we secured the design donations…I waited and I waited…I hate to say it, folks, but that e-mail never came.

A couple hours later, I learned that someone else won the in-kind donations for design, and I was shocked.  I planned, I did everything as I should have done, and I lost!  I couldn’t help but feel down.  I mean, what a morale buster!  Here it was, kick-off day for my campaign and you know what I did?  I cried.  I know…can you believe it?  And even worse, I cried in front of my boss.  He came in to say good morning and I lost it.  I’m sure it was a combination of fatigue and disappointment, but nonetheless the tears surprised me (and poor Rick ).

“Friendly fundraising competition, my a@#”, I told myself.  Then I settled down, and I thought about  the campaign.  This is not about winning, although of course it would be lovely to have the title “Woman of the Year”.  I can totally picture my mug on a Metrobus!  :)  I thought of Ryan and Molly, the Boy & Girl of the Year, and I thought of my own experience.  In the grand scheme of things, winning this competition is  just not a big deal.  Participating in it is an honor.  It’s that whole perspective thing I talk about all the time.  I am here, I am healthy, I am helping others, and that, in essence, is what truly matters.

Don’t get me wrong…I’ll still get stressed when I get a Facebook invite from another candidate or when I read about someone else’s campaign, and my head will start to pound when the e-mails start piling up.  I think it’s only natural to wonder “am I doing enough compared to him/her”?  As long as it doesn’t make me lose focus in my own campaign, I’ll do just fine.  And you know what?  I’m already a winner because “I’m good enough. I’m smart enough. And doggone it, people like me.” hahahahahahaha  Sorry, I had to lighten things up a bit…it was getting entirely too serious.

One more thing before I sign off and hit the hay.  Check out this AWESOME trailer Katie and her friends Joey and Tevarris made:  “Second Chances”.  You will love it!!  And enjoy the many photos.

Love,

Julie

“Motivation is what gets you started.  Habit is what keeps you going.” ~Jim Ryun

Well, the motivation is certainly there!  It’s that gorgeous dress I wore as the maid of honor in Lori’s wedding.  In my mind, I dream of myself, fit and toned, walking across the stage to my at-bat song June 11th at the Man & Woman of the Year gala.  The habit part though…that’s a little more difficult to grasp.

Nevertheless, I’m pretty proud of myself because I have been swimming 3 times now in the past week and a half!  I haven’t made it to the weight room yet, but it’s on my to-do list.  The first time I went to the gym to swim, I felt totally overwhelmed.  Thoughts of the campaign constantly flood my mind, and I’m already tired of technology.  I feel like I see the glow of the screen from my computer and phone even in my sleep, but I forced myself to pack a swim bag and head over to the pool after work last Monday.

When I walked into the locker room, I thought “how will I ever make a habit of this?  I’m tired already!  It smells in here.  I’m bored.  I wish I had someone to work out with.  Will I ever be able to create a routine?”  I changed into my swimsuit, grabbed my cap and goggles and somehow kept moving toward the pool.  I jumped in, adjusted my swim gear and started with my favorite stroke, freestyle.  At first, all I could think was “only one lap…how will I ever be able to swim 10 or 20?  How can I do this several days a week?”.  After a couple laps though, I instinctively started counting my strokes, my rhythm keeper while swimming.  My pulse sped up, yet my mind slowed down.  I thought to myself, “this is doable.”

Right then and there, in the middle of the lap lane, I decided that I wouldn’t judge myself harshly if I didn’t make it to the gym every day.  As much as I would love to have the time and the energy to dedicate myself to alternating swimming and weightlifting every day, I know it doesn’t fit into my life right now.  I think improving your health is as much about realizing what you can’t press your body to do as it is about challenging yourself to do more.  When I changed my thinking, I fell into an easy pattern and I actually began enjoying the swim.  Imagine that!!!!

So here’s to creating habits (good ones, that is ) and finding joy, strength and relaxation in whatever exercise you enjoy!

Love,

Julie

PS There’s quite a mix of photos…enjoy!

PSS Watch this video of the Boy & Girl of the Year for the National Capital Area…keeping Ryan, Molly and their families in my thoughts is always so encouraging.  Remember, the Man & Woman of the Year campaign is all done in their honor, and what an honor it is.

Surprisingly, I’m relatively awake for 1:13 AM, especially for someone working with one unit less of blood!  That’s right…I had my second therapeutic phlebotomy tonight!  Maybe that was bad blood or something…it must have been holding me back because any other night, I would be exhausted by now…I feel like I’ve had a transfusion…that’s how much energy I have at 1:15 AM (yes, it’s taken me 2 minutes to write these last couple of sentences ).

I’m pretty sure though that it doesn’t have anything to do with the blood and it’s just pure adrenalin.  You see, today is kick-off day for my Man & Woman of the Year campaign!!!!!  From now until June 11th, The Growth Factor (my team name) will be working hard to meet our goal of $50,000!  The past few hours, I’ve been busy putting the finishing touches on e-mails, figuring out how to do mail merge on the Mac, printing up address labels, fixing a printer (why do these things always break right when we’re in the thick of things? ) and social networking my little heart out.  And it is all for ONE. IMPORTANT. CAUSE…

“to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families” (the mission of The Leukemia & Lymphoma Society).

From blood transfusions to phelbotomies…from fatigue to energy…from diagnosis to newfound health…these past six years have seen many transformations, and this campaign is my ultimate gesture of gratitude to an organization that makes second…and third chances possible.

Happy kick-off Day to everyone!!  If you find me whining at all over the stress of the campaign the next ten weeks, kindly remind me of this post and how far I’ve come.  It is an honor to be able to help others.  I think Calvin Coolidge put it a little more eloquently:

“No person was ever honored for what he received. Honor has been the reward for what he gave.”

And here’s a little motivational photo to get everyone in the fundraising-kick-butt-state-of-mind:

You’re ready to help me kick some butt now, right?!!  Woohoo!!!!!!  Here’s to ten weeks of fantastic,  fascinating fundraising festivities!

Love,

Julie

For more info, visit my Man & Woman of the Year campaign page.

Wow…I just don’t know where to begin!  I think I’ll save the best for last.  Wait…don’t scroll to the bottom just yet because all the news is good!!!  You don’t want to miss out on anything. 

Think on this for a moment or two:  “The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome.  The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.” ~Helen Keller

My hilltop hour has arrived!  Well, I guess that’s not completely true.  The past six years have brought with them several dark valleys, but many more hilltop hours:  remission, marathons, birthdays.  I consider this next adventure the culmination of all things leukemia.  It is indeed a wonderful honor to announce my candidacy for Woman of the Year in The Leukemia & Lymphoma Society’s (LLS) Man & Woman of the Year campaign (MWOY)!

I participate on behalf of a Boy & Girl of the Year for the National Capital Area, Ryan Darby (age 7) and Molly Farrell (age 5).  Ryan is undergoing treatment for precursor B acute lymphoblastic leukemia (ALL) and Molly is receiving treatment for pre-B lymphoblastic lymphoma.  From what I have learned, the treatment for children is typically a much longer process.  Ryan’s official end of treatment will be February, 2013, and he was diagnosed in December, 2009.

I have also learned, however, that the five-year survival rate for children with ALL is now 89%, up from 3% in the 1960s!   Much of this is due to LLS and the incredible amount of research they have supported since its beginnings in 1949.  When Rudolph and Antoinette de Viliers founded the Robert Roesler de Villiers Foundation in New York City, leukemia was considered 100% fatal:  “most leukemia patients, especially children, died within three months” (LLS website, “Hope Rises from Loss”).  Their own son, after whom the foundation was originally named, died at age 16.

The Robert Roesler de Villiers Foundation, now known as LLS, has invested upwards of $750 million in leukemia, lymphoma and myeloma research.  Sometimes I let my mind wander, imagining the “what ifs”:  What if the de Villiers family never took the time to start a fundraising and education organization?  What if no one supported them?  What if doctors and scientists didn’t believe in the possibilities of new research?  What if I lived in a different era?  How would my outcome have differed even ten years ago?

Molly Farrell

I’m not one to dwell on statistics, but it’s impossible not to be impressed by the numerical achievements.  What is important is to remember that they’re not simply numbers.  They represent patients.  This is where I feel my personal story will help others to realize how important LLS is.  I am fortunate that I do not have to explain how wonderful the organization is, how honorably they handle themselves and their financials.  It is very well-respected which makes my hilltop hour all the more enjoyable.

This blog post has some conflicting statements.  I am doing this in honor of Ryan and Molly and so other patients may enjoy the health that I do, but I call it my hilltop hour…kind of selfish, huh?  Well, here’s how I look at it:  as a leukemia survivor, I cannot help but feel great pride simply because I am alive.  And I’m not even responsible for my health!  I owe that to my doctors (especially Dr. Kales! ), nurses, Laura and the many, many scientists who have studied cancer and pathology.  Still, whether or not I had anything to do with it, I’m proud to go out there and say, “I’m still here.”  Maybe on some subconscious level, I feel like it’s my gift to all those who’ve toiled on my behalf or an inspiration for patients who feel like they will never again have the life that they once did.  I know I am lucky because not everyone survives and not everyone thrives.  Pride probably shouldn’t have anything to do with it, but it does.  Thus, I consider this campaign my hilltop hour.

I will go out onto that stage for the final gala June 11th proud and grateful to be part of such an incredible experience.  There’s something about fancy dresses that make any girl feel special.  :)  It’s the best time for me to say “Look at me, leukemia!!  I kicked your a@$ and I’m beautiful and healthy now!”  You know what else is cool?  I get to pick an at-bat song, and I chose something very meaningful…I’m not going to give it away, but if you’ve been reading my blog regularly, you’ll know what I chose!

It is a once-in-a-lifetime opportunity to be nominated, and I am incredibly grateful to Brian for thinking of me.  He is a fellow leukemia survivor and transplant patient (his brother was a perfect match, and he received his transplant the same year I got mine!) and he was a candidate for Man of the Year last year.  Thank you, Brian!!

The campaign kicks off March 31st!!  Lori, Katie and I have been hard at work getting some planning down the past few months.  They too are an important part of my hilltop hour because they are my campaign managers.  We plan on utilizing technology to the utmost, so check in to keep updated on campaign progress:

My Man & Woman of the Year Fundraising page:  http://nca.mwoy.llsevent.org/JulieMatthews

Facebook:  Julie’s Woman of the Year campaign

YouTube:  http://www.youtube.com/user/jkaymatthews

Twitter: http://twitter.com/jkaymatthews

Lucy Jean!!!

And NOW for the best, most wonderful news…drum roll, please!!!  I am now an aunt!!!!!!!!!!!  Lucy Jean Tiso was born Tuesday, March 8th, 8 pounds, 20 inches.  She and Laura are both doing well, and Tiso made it home just in time!  Little Lucy is just perfect.  I am looking forward to spoiling her rotten!  I mean, look at that face!!  Wouldn’t you do the same?

OK, it’s a gettin’ late, so I’m headed to bed.  I hope everyone had a wonderful weekend…spring is almost here!!!

Lots of love,

Aunt Julie

Don’t worry!!!  I’m not actually donating my traitor blood to anyone, but they are going to start me on a phlebotomy program!  Imagine that…I never thought I’d see the inside of the blood donor center again, but I will be donating a unit of blood once a month for a while.  I’m sure it will be promptly discarded as soon as they take it, but it’s still rather exciting, don’t you think?

Perhaps I should explain myself a little more.  Due to the many blood transfusions I had from 2005 through 2008 (119 to be exact), my ferritin (a protein that stores iron) level is very high.  For women, the normal range is anywhere from 12-150 ng/mL (nanograms per millileter)…mine is a whopping 1,598 ng/mL.  High ferritin levels can lead to organ damage, so it’s important to take measures to reduce that number.

Back in 2006, I started a new medication called Exjade that helped to reduce the amount of ferritin because my blood counts weren’t high enough to actually remove a unit of blood.  Exjade also caused some side effects, and it certainly didn’t work as fast as a phlebotomy program will.  So, are you excited for me now?  :)  The whole concept of being healthy enough to have them actually remove some of my blood is wonderful.

So here’s to donating blood…even though they’ll be throwing mine in the nearest garbage bin, it’ll be a thrill to be on the other end of the needle.

Happy Thursday, everyone!  Remember me?  Well, here it is 10:52 PM and I’m exhausted, but I couldn’t let this day go by without writing something.

Today is January 20th.  You’re thinking “Duh, Julie…we know that…so who cares?!”  Well, it happens to mark six years since I was first diagnosed.  While it’s not a day I celebrate necessarily, it is an anniversary of sorts.  When I was checking out in the grocery store tonight, I thought “Wow, it’s so nice to be in a grocery store.”  Simple pleasures, my friends.  I will always be able to appreciate the little things.

So, happy healthy wishes to me on this strangely significant day.  And lots of love to all of you…if you’re still there, that is.  I know it’s been a long time!

Below is something I wrote a few weeks ago, thinking maybe we would post it on the Side-Out blog…I felt so much better after writing it and I already have the bone marrow results:  ALL GOOD!!!  It’s good to know there’s a happy ending before reading it. 

“I hate the fear.  I hate that life can be rolling along, and all of the sudden a physical symptom asserts itself, and my carefree attitude is supplanted with fear. I hate that it forces me to recall my history of physical illness.  If you have felt it, you know what it is.  It is persistent.  It is overwhelming.  It is unabashed.  I wish I could laugh it off and blame it on hypochondriacism.

I told my parents about my worries, and I had a little cry in my office.  I wrote down this post to both let you know what it feels like and to release some stress.  Now I will wait to hear back from my oncologist, and hopefully I will receive another reassuring phone call, giving me the OK to shirk the symptoms and carry on with life as it was.”

January 20th will never be “just another day”, but I’m OK with that.  I may live with fear sometimes, but I am alive, I am healthy and I am thankful.

Lots of love and Happy belated New Year!!!

Julie

Never before has that phrase sounded so sweet.  I did it.  26.2 miles.  I. finished. a. marathon. (those periods are there so you read and pause long enough to contemplate the incredible feat I just accomplished! )   Also, you may want to cue this up in another window before you continue to read: http://www.youtube.com/watch?v=xEF4zH6XHCk.  There, now you can get a real sense of my accomplishment.

I apologize for my extended blog absence, but as you can see from my photo essay below, I’ve been rather busy.  I also think I’m suffering from post-marathon depression.  It’s strange…when I finish a race, I feel incredibly proud.  Afterwards, when I’m in my room putting my stuff away, each time I’ve felt a wave of sadness.  I did a little research on this, and as it turns out, I am not alone.  As with any big life event where you plan many months for something that lasts only minutes or hours, you are disappointed when it ends.  For me, it’s almost a form of loneliness.

I know part of this sadness stems from the fact that TNT is such a social organization.  I will truly miss waking up early on Saturday mornings to meet the team at one of the many beautiful DC trails (except for the W&OD Trail…see the photos below for that story!).  I realize I need to look at the entire experience from a different perspective.  Instead of feeling down, I need to relish the race I just completed.  I must remind myself what it felt like to hear strangers cheering “Go Julie!”…how it felt to walk in the dark before San Francisco woke up…the jolt of energy I got when heading up the hill in the Presidio…the excitement and pride I felt when I saw Katie, my mom and my dad on the sidelines…the laughs Danielle and I had when we saw the girl whose shorts kept drooping to show off her plumber’s crack :)…the strength I felt in my hips and legs while passing mile marker after mile marker…the total body aching that stayed with me from mile twenty onward…yes, even that was a good feeling considering where I might be if it weren’t for Team in Training and the Leukemia and Lymphoma Society (oh, and Laura too!).

I found this quote, and it is so appropriate.  I only wish I wrote it myself:  “Savor the pain, you deserve it. The couch potato lives in a body numb world not knowing the feeling of being totally awake, alive and aware. The non-athlete will never experience the true feelings of taking the body to the limit. As an athlete you will also experience true satisfaction when you are at rest or relaxing.” (from a piece in RunningFit.com about post-marathon depression)  So from here on out, you must always refer to me as an athlete!  Hmmm…I wonder if other “athletes” eat mounds of Halloween candy and have chips and salsa for dinner sometimes.

My photo essay below is the main event for this blog post–hopefully you will feel as though you were right there with me.  I once again carried the names of all my donors in my hip pack, and of course you were all with me in my heart.  You will notice that pride seems to be the theme of this post.  I walked for you because I wanted to make you proud.  I walked for other patients because I want them to feel what it is like to regain strength.  Mostly though, and I’m not ashamed to say it, I walked for myself.  Yes, I needed to prove to myself that I could do it, but more than that, it satisfied an urge to challenge my new self, my JuLaura bone marrow that just recently celebrated its second birthday!

Think on this for a second, folks: “Man cannot remake himself without suffering, for he is both the marble and the sculptor.” (Dr. Alexis Carrel)  I love it!  Life is what you make it (wow…my quote is not nearly as eloquent as his!), and I have a long list of goals.  I do not know how long I will be here (hey, no one does!), and this marathon was one way to remind myself of both the challenges and joys that await.  Just to throw in one more quote (because you know I love them, and I want to see if I can fit as many as I can into one post :)), “Sports is human life in microcosm.” (Howard Cosell)  So, with all that said, who wants to join me in doing the Marine Corps Marathon next year?  That’s right!  A hometown race!  I still plan on going out to San Francisco, but I will do the half marathon instead of the full.  I am hoping they have another “Race for an Entry” 10K in Quantico this spring, so I won’t have to worry about making it into the Marine Corps Marathon lottery.  I plan on fundraising for the Nike Women’s Marathon and doing the Marine Corps on my own. I’m already excited to start training in May!

Before I forget, I wanted to include Laura’s text to me after finishing.  I figured you’d all appreciate what the “gift of life” had to say:  “Congrats!!!  Very proud of you & knew you’d do well…you literally couldn’t have done it without me!” hahahahaha  She’s right though!  Thank you, Laura, for giving me the gift of new experiences!

Now, without further ado, I present the many photos from the past month and a half.  Skim if you must, but you might just be missing an important part of the story.  If “Chariots of Fire” is no longer playing, choose one of the songs below…each one played (no pun intended…hahahaha) a key role in keeping my hips swaying and my feet moving along the course.  I created a “San Francisco” playlist–too bad there’s no easy way to just share it with you because it’s darned good, if I do say so myself.

Lots of love and gratitude for your support.

Enjoy!
Julie

Oh, one more thing!  If you want to see some professional photos, go here and enter bib number 21172…I love that you can hear Mom, Dad and Katie cheering for me throughout the video.

PS I can’t believe I almost forgot to include this!  Are you ready for the final fundraising numbers?  Thanks to all of you, the Leukemia and Lymphoma Society has $5,067 more to put toward patient services and research.  Also, we learned at the pasta party that 3,800 participants at the Nike Women’s Marathon raised $13 million, yes MILLION!!!!!!!!   Congratulations and THANK YOU!!!

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