The Growth Factor’s Kickin’ it Off!!!

Written by JKM on March 31st, 2011

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.

My Hilltop Hour

Written by JKM on March 13th, 2011

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)!

Ryan Darby
Ryan Darby

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

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!!!

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


Giving Blood

Written by JKM on February 15th, 2011

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.

Written by JKM on January 21st, 2011

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.

For me, the symptoms are shortness of breath and a quickened pulse.  I reach over and feel my wrist while watching TV after dinner, trying to be sly so my family doesn’t see me.  At night, I lie in bed, feeling the pulsing in my head.  Sometimes it feels like the pillow gives it an echoing effect.  I roll over and pet my dog, always remembering that stroking an animal has been shown to create a calming effect and thus a slower pulse.  Although my pets are certainly much more than a calming effect…they are my best friends, my sidekicks.

I worry when walking up two flights of stairs leaves me slightly winded.  This is what upsets me the most.  I am 33, I recently finished a marathon, and I also happen to be a two-time leukemia survivor.  If you have read my previous posts, you are already familiar with my story.  January 20th marks six years since my original diagnosis of acute myelogenous leukemia and it’s been just over two years since my stem cell transplant.

I just e-mailed my oncologist to request a bone marrow biopsy.  I am one of the few patients who actually requests them!  If I could go in and get one this afternoon, I would.  There is nothing more reassuring than a phone call from him to tell me the slides look good.  Even being in his presence during the procedure is reassuring.  I guess it is because I know I am taking the necessary measures to monitor my health, and I have complete and total faith in my physician.

Throughout the past six years, I have probably received fifteen of those reassuring phone calls only hours after the biopsy.  Of course, there was that one call when he said it looked like there were some leukemic cells, and that is the call that makes my heart race even faster.  I believe every cancer patient must deal with the fear of relapse, but once you have actually relapsed, the certainty of life becomes all the more elusive.

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


I Did It!!!!

Written by JKM on November 7th, 2010

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!!!

http://www.youtube.com/watch?v=btPJPFnesV4

http://www.youtube.com/watch?v=A0H3bJHWGl4&feature=related

http://www.youtube.com/watch?v=YTdCzIduUb4

http://www.youtube.com/watch?v=6ab1l2TwFp8

http://www.youtube.com/watch?v=cr3YCNy6HUM

http://www.youtube.com/watch?v=59qR4kRdhLE

http://www.youtube.com/watch?v=foNWLp5Nzow

http://www.youtube.com/watch?v=uY3LAFJbKyY&feature=related

http://www.youtube.com/watch?v=AsEjsIbWq88

http://www.youtube.com/watch?v=BgSyB5xSo2U

http://www.youtube.com/watch?v=mAsqZTwp1lQ

The Finish Line and the Healthy Bone Marrow

Written by JKM on September 13th, 2010

That sounds kind of like a children’s book or something, doesn’t it?  hahaha well, sort of. :)

Three hours, eight minutes, fifty seconds.  That was how long it took me to walk the Virginia Beach Rock ‘n’ Roll Half Marathon!  If you’re a person of details and you’d like to know my pace for each mile, refer to my walkmeter report:  http://maps.google.com/?q=http://share.abvio.com/4433/2b7b/4c54/3257/Walkmeter-Walk-20100905-0740.kml…looks like mile number seven was the best one, huh?!  Right smack in the middle!  It was an absolutely beautiful day for a race.  I think Earl came just close enough to bring a cold front and stayed just far enough away to leave VA Beach out of harm’s way.  Two different bands were playing the Dixie Chicks “Earl” song when I went by…it seemed quite fitting!  If you haven’t heard that song, it’s a classic:  http://www.youtube.com/watch?v=Gw7gNf_9njs!

As you’ll see from the many photos below, Katie and I are total champions.  :)  I already signed up for next year’s half, and I plan on using it as training for another full marathon.  I would like to make this a Labor Day tradition!  Anyone else want to join me?  It was so nice to have Katie there doing the race with me for Team in Training.  I was especially honored that she put my name on the back of her shirt.  Two years ago at this time, I was just arriving in Seattle and getting acquainted with the Hutch, impatiently awaiting my “gift of life”.  Now here I am, appreciating life for the gift that it is and logging mile after mile out on the trails.  Sure, I dreamed that I would feel this good one day, but I couldn’t physically imagine it at the time.

Which brings us to the second part of the title:  “the healthy bone marrow”.  Today, I had my 21st bone marrow aspirate at the hands of my favorite bone marrow aspirate/biopsy expert (Dr. Kales, of course!).  If you remember, I requested it (as I do with most of them).  I have had some occasional bone aches (mainly in my spine), headaches, a rapid pulse…I wasn’t too worried because I never feel out of breath when speed walking.  That was a major symptom each time I was diagnosed.  Still, I needed to be absolutely-positively-no doubt-in-my-mind sure.  Dr. Kales called tonight around dinnertime and said “your bone marrow looks great!!!!”  I can taste the incredible sweetness of relief (but maybe that’s because I downed a Dairy Queen Reese’s Pieces Blizzard for dessert).  I often take the time to thank my body for its strength, resilience and health (silently of course…otherwise, people might start to wonder. :) ), and tonight is one of those times.  “Thank you for giving me time”, I think.  “No matter how long it may be, I am so grateful.”  Not that I’m a pessimist and worried about dying young, but I certainly understand more than most my age that health is fragile and life is uncertain.  I will always worry about relapse, but I think it can be seen in a positive light to the extent that it engages me in the present.

Warning:  the following material may be disturbing to some people (e.g. Lori). :)  My mom and I were talking about the bone marrow tonight (she’s been there for all 21!), and she mentioned how it made her feel slightly sick.  I was shocked!  Apparently when they dig around in there with that big ol’ needle, it makes a crunching sound when they hit the bone.  Why have I never heard this?  I mean, I’ve never been sedated.  One would think I could hear my own bones crunch!  Good thing I can’t feel it!!  Can you imagine?  Crrrrruuuunch!!!  hahahaha OK, now for the really graphic part.  I found this video:  http://www.youtube.com/watch?v=nwM66oLQEiI…this guy’s such a wuss, all his deep breathing and what not!  :)  I just lie there …I almost feel like I could close my eyes and fall asleep.  Especially at the Hutch where they play classical music!  I’ll have to have my mom videotape it next time I request one.  I know you’re waiting with baited breath!  Except I’ll edit out my butt ’cause no one needs to see that!

In training news, I did fourteen miles this past Saturday (a break from the rest of the group…they were doing 18, but since I had done the Va Beach Half the week before, I only had to do 14!), the longest miles I’ve ever done!!!!  It was an absolutely gorgeous day out on the W&OD trail, a trail I usually do not like for its lack of shade.  The hours went by quickly, and before I knew it, I was back in the parking lot with the run and walk teams, scarfing down some donuts as a treat for doing so well…hmmm…do you think that kind of overrides the whole exercise thing?  Oh well.  C’est la vie.

I hope you enjoy the many photos below.  Thank you all for your support, both financial and emotional.  Now that I know I have a healthy bone marrow, I’ll kick it up a notch and get my butt ready for San Francisco!!!!!  It is NOT too late to donate by the way…several people have asked. If you’ve been thinking about it, but just waiting for the right time, that time is now.  :) All my funds are due October 1st…can you believe fall is here already?!!  Woohoo!!!

Lots of love,

Julie

Happy Almost Labor Day!!

Written by JKM on August 31st, 2010

The countdown begins!!!  The VA Beach Half Marathon is only four days away!  We had a short training this past Saturday (only four miles), and I was the first to finish…granted most other people were doing 10, 14 and 16 miles since the majority are doing full marathons, but that’s neither here nor there. :) I am nervous about the race, but I am looking forward to that feeling you get at the finish line when they place the medal around your neck.  It feels like yet another victory over leukemia.

I’ve been feeling really down because this weekend Pete told me he just wants to be friends.  I’m hurt, angry, and just very sad.  I find it strange that it’s more painful to hear that someone is no longer attracted to you than it is to hear “you have cancer” or “your leukemia is back”.  The only explanation I have is that when they told me I had leukemia, there was nothing I could do but accept the fact that I was sick.  I never once thought, “geez…what could I have done to get this leukemia?  Can I somehow alter my diagnosis so it’s not cancer?”.  I know, this analogy’s a bit of a stretch!  :)  Stay with me here, folks.  Basically what I’m saying is that I never blamed myself.  I reacted to external circumstances:  somehow I got cancer and they would give me medicine and I would either get better or I wouldn’t.  With Pete, I wonder “what did I do wrong?”, “could I have changed things?”, “am I not a datable person?”…hundreds of questions pop in and out of my mind and unfortunately there are no answers.

So that sucks.  BUT the marathons are giving me purpose and motivation, and I know finishing them will remind me of my strength.  I also have two pretty little glass stones they handed out at training this past weekend.  There were probably five different colors and our mission mentor, Cat, assigned a meaning to each color.  We were supposed to choose a color (or two), a reminder of why we walk the long miles.  I chose life and health.  I pretty much thought about myself all four miles.  :)  Of course I am doing this to help all patients, but I would be incapable of doing this if it weren’t for the fact that my own health was restored (thanks to Laura!).  I hope this health allows me a long life, and thus my choice of the second stone.

Health and life.  That’s what it boils down to.  No matter how sad I may feel right now, I still have the ability to step back and remember what is most important.  Remembering this will help me to cross the finish line with a smile.  Thank you for all your support and GO TEAM!!!!!!

Love,

Julie

PS I downloaded this cool app for my phone called “Walkmeter”, and it maps out my trainings.  I don’t know why, but comparing the two of these totally cracks me up.  Can you take a guess where we were training for the second map?

http://maps.google.com/?q=http://share.abvio.com/4433/2b7b/4c54/3257/Walkmeter-Walk-20100814-0654.kml

http://maps.google.com/?q=http://share.abvio.com/4433/2b7b/4c54/3257/Walkmeter-Walk-20100807-0655.kml (track)

Enjoy the photos!

Written by JKM on August 11th, 2010

Have you missed me?  Well, I’ve been busy!!  I’m very proud to say that I’m up to 10 miles with Team in Training!!  I’m quite impressed with myself.  It’s funny how when I’m driving around town, 10 miles feels like quite a distance, but when I’m out there on the trails with everyone, those few hours go pretty quickly.

Thank you so much for your donations.  You’ve donated $1,890 so far!!  Only $60 more ’til I reach my minimum for the VA Beach Half Marathon!  Once I hit that mark, I’ll be in full fundraising mode until I raise $2,650 more for San Francisco.  Pass along my page (http://pages.teamintraining.org/nca/rnrh10/jmatthews) to whomever you like, share it on Facebook, ask your company if they would consider doing a matching donation…any help is greatly appreciated!  I plan on organizing a local happy hour too so stay tuned for more details.  And speaking of fundraising, I came upon this article while looking through my google alerts for breast cancer at work: http://www.thedailytell.com/2010/08/brits-ride-rollercoaster-naked-for-breast-cancer-research/…perhaps I’ve been going about my fundraising the wrong way!  Anyone up for a nude coaster ride?! hahahahahaha

As you can see from the photos below, the past couple months have been full of activity…a friend’s wedding, a moonlight kayaking tour, the Gipsy Kings concert, a sunset ceremony at the DC Marine Corps barracks, a trip to Richmond for Katie’s TNT fundraiser, lots of fun dates with “Perfect Pete”.  :)  Two years ago at this time, I was preparing to head out to Seattle and I was dreading it.  Little did I know how much I would come to love the city!  Neither could I have imagined walking ten miles, exposing myself to the dirt and bugs in a kayak trip, sitting in a crowded room to celebrate a wedding, enjoying the Lawn at Wolf Trap, dating a wonderful guy.  I am not surprised I’m able to go out and do all these things now, but I am very grateful.  Thank you, Laura, for the gift of life!

And speaking of, Laura is going to give someone else the gift of life soon!  No, she’s certainly not sharing her marrow with anyone else–I stake claim to that–she is, however, going to have a baby!!!!!!!  That’s right, folks!  Come March, there will be a little Tiso running around!  Well, it probably won’t be running around in March…that would be weird.  It takes a while before they can walk, you know.  Nevertheless, there will be a baby and I will have my first niece/nephew!  Don’t laugh, but I googled “how to be a good aunt”, you know, just to see if anything came up that I might not think of.  It’s pretty self-explanatory though…spend time with them, that’s what builds the strongest bond and it is what they will remember the most.  Of course, I just had to look at my own aunts (and that of course includes you, Aunt Bitsy!!) to know the answer.

By the way, I think if the baby’s a girl, Julie would be a beautiful name, don’t you think?  I’m just saying.  Laura and Tiso, you will be wonderful parents and I can’t wait to meet the little guy/gal!  To read more about Tiso, check out his blog, which is now up and running:  http://bentiso.com/.  He will be leaving for Iraq very soon (he’s been training up in Wisconsin), so please keep him (and Laura AND little baby Tiso) in your thoughts.

In health news, I’m heading in to see Dr. Kales next week for a bone marrow biopsy.  Yes, I requested it!  I’ve had some headaches, minor random bone pain and some cramping, and the only way I can achieve some peace of mind is to hear the words “Everything looks good”…not just in terms of blood counts, but deep down in my marrow.  I honestly don’t think that the leukemia is back, but of course I worry.  I’m encouraged by the fact that I do not get short of breath when I do my long miles with Team in Training on Saturdays.  When the leukemia came back, I remember feeling out of breath while just playing with the dogs in the front yard.

I discovered today though that I have shingles.  I know, gross.  It’s on the right side of my stomach, and I noticed it a little bit Saturday night, and it’s gotten progressively worse since then.  My mom told me not to post a picture of it online.  I was all ready to show you what it looked like–you know by now that I bare all (remember the shots of my bone marrow biopsy?)!  I saw my dermatologist today, and she is 99% sure that it is shingles.  I was worried about graft versus host disease (GVHD), and I insisted that she biopsy the area just to be sure.  We should get those results in 10 days or so.  In any case, she started me on Valtrex, so hopefully I can kick this and avoid the severe pain that so many people get with shingles.  Right now, it’s just incredibly itchy and slightly uncomfortable.  It’s right where one fat roll folds into another one when I’m sitting which does not feel good.

Anyhoo, I’m hoping upon hope that the shingles disappear and the doctors allow me to continue Team in Training.  I will keep you in the loop!  In the meantime, enjoy the photos below and have a wonderful rest of the summer!

Lots of love,
Julie

Life is good.

Written by JKM on July 5th, 2010

Just as an aside before you begin reading:  as always, this blog is a bit dated, so not all of the information is  entirely accurate…for instance, Tiso left last Monday.  OK, you may read on now. :)

___________________________________________________________

So, do you remember how I whined in so many previous posts about dating and how I couldn’t wait to meet someone special?……well, I have some exciting news for you!!  I met someone!  His name is Pete and he’s perfect.  In fact, let’s just refer to him as “Perfect Pete”.  :)  We’ve been dating about a month and a half, and I find that I’m pretty much smiling 24-7.  OK, that’s a lie because I don’t think I smile in my sleep.  And if I did, that would be really creepy.  My point is I’m very happy.

If you know me well, you’re aware that I’m the queen of lists.  I have 55 lists on my phone alone, and that’s not counting the post-its I keep at work, by my bed and yes, in the bathroom (Lori, I know you’re with me on that one…didn’t we have a conversation about how so many ideas come when you’re in the shower?).  One of those lists on my phone is now called “Pete”, and it’s filled with places we want to go together, activities we want to do, restaurants to try…anything we come up with that we want to experience together.  I was worried Pete would think I was a weirdo when he found out I started a list, but I’m happy to report that he’s embraced it and we’re both constantly making updates.  :)

I knew “Perfect Pete” was special on our first date, but he outdid himself on the second.  I was really nervous to mention leukemia, as you could probably sense from my last post, but I wanted to tell him.  He was so easy to talk to and he seemed genuinely interested in my life, so when he asked me how my family and I grew to be such fans of Seattle (he lived there for several years), I bared all…not literally…I didn’t strip down in P.F. Chang’s.  :) Rather, I told him about the leukemia and my transplant.  “Perfect Pete” raised his wineglass and toasted me.  I could have kissed him right then and there!  I didn’t though…we clinked glasses and I thought to myself, “wow, this guy has class.”  He took what was a fairly awkward situation and made me feel not only comfortable but also special.

I could go on and on about “Perfect Pete”, but you’ll just have to meet him for yourselves.  And actually, I better stop referring to him as “Perfect Pete”, because he’ll probably read this and start getting a big head (again, not literally). :)

Aside from having a new boyfriend….wait, let me just write that again…boyfriend…yah, that feels good.  :)  So aside from that, life is relatively uneventful.  Well, that’s not true.  My report card from the most recent visit to see Dr. Kales revealed the highest blood counts I think I may have ever had!  I also went to my gynecologist, and she informed me that whatever test they did back in December regarding my hormones meant nothing.  She did another blood test and called me the next day to tell me I am NOT post-menopausal!!!!!!!!!!!  This doesn’t mean I will definitely be able to have children, but it does give me hope.

And speaking of hope, I’m hoping that my massage on Tuesday will provide some relief to my sore muscles.  I walked 6 1/2 miles yesterday at Team in Training!!  That’s half of a half marathon!  I have yet to set up my fund-raising page, but you will all be hearing from me soon!!  I think “Perfect Pete”…I mean Pete, is distracting me.  Here we are over a month into training, and I haven’t raised a dime!!  Oh well…I like being distracted, and I WILL have my page done this week…it’s a promise I made to myself.

And here’s a promise you can make to me…please keep Tiso and Laura in your thoughts.  He leaves for Iraq very early tomorrow morning (well, technically, he’ll be in the states for another six weeks, but we won’t see him), and he’ll be there for one year.  Tiso, we will miss you, but I look forward to reading your blog and hearing your stories.  What a party we will have one year from now!!!!!!!  I can’t wait.  Here’s a little Irish blessing for your trip:

A sunbeam to warm you,
A moonbeam to charm you,
A sheltering angel, so nothing can harm you.

I leave you with an NPR interview I did a few weeks ago on “Animal House”…they interviewed me, obviously, not the other way around.  :)  Click here and scroll down to the second “Dr. Gary” section…I am on just after the first e-mail they read (about the cat that likes bleach).  Enjoy the many photos below!!

Lots of love,

Julie

The Caribbean, Vegas…LIFE IS GOOD!!!

Written by JKM on May 7th, 2010

Minus that damn throat infection I got when I returned home from my world travels. :)  The important thing is that it’s gone now, it’s 8:36 AM and I’m hanging out at Volkswagen.  I’m enjoying my free French Vanilla coffee and feeling industrious as I sit here at my table, all my to do items set up before me.  I just found out the VW’s rear brakes will fail inspection…I knew I heard a weird sound!

OK, now it’s two weeks later, and I still haven’t finished this post I started at the beginning of April.  Honestly, this is so ridiculous.  I don’t blame you if you just write me off!  But then, if you do, you’ll miss out on all the excitement I’ve been having these past months.  Let’s begin with my trip to the Caribbean, to Canouan (pronounced “Can-oh-Juan”) Island specifically.

I must first thank Paulina for taking me with her on this trip.  She won it because she was the number one rep for her company last year!!!  Isn’t that wonderful?  The kicker to this wonderful adventure is that it was free…well, I did end up paying $450 because I indulged in seven, that’s right, SEVEN spa treatments (a manicure, pedicure, 2 Swedish massages, a head massage, foot massage and a body wrap).  I just told myself, “If anyone deserves this, it’s certainly me!!!!”…$450 isn’t bad for a week in paradise, complete with our own golf cart, yummy dinners, wine and of course, **the spa**.  My massage therapist’s name was Bang, and as you’ll see below, I took a picture with her to remember the many relaxing moments she gave me.  By the way, we got $2,000 between the two of us to spend on drinks and spa treatments, so the $450 I owed came in after that had been figured!

Prepare to be wowed by the piercingly blue waters, the jacked up turtles (they look like they’re on stilts compared to our native canouans–that’s right, “canouan” is the Carib word for “turtle”) and the movie-esque sunsets.  Are you surprised that I took a plethora of photos?  You shouldn’t be by now, that’s for sure.

There are so many stories to share, but being that I’m writing this over a month after leaving paradise, I can’t conjure up the details.  Let me run through the highlights:  our golf cart, yah, definitely the golf cart.  It was electric, so we had to plug it in every night.  Paulina and I both always wanted to drive it, but I tried to hold back my feelings because I knew she earned the trip and I was simply there for the ride, literally…I rode shotgun.  hahaha no, Paulina did share, but there were those times where she left me to fend for myself and I had to call the front desk to pick me up.  Oh well, it was her trip after all.  Still, I decided I’d like my own golf cart for my neighborhood…I never realized just how much fun they could be!!

Another highlight was the sailing trip we took to Tobago Cays to swim with the sea turtles.  They are incredibly graceful.  I struggled to keep up with them as I kicked my way through the waters.  I think the ones that did let me keep up were simply humoring me.  I touched their feet and their shells…the feet felt pretty smooth, but the shells were sandy.  They are absolutely beautiful creatures.  I framed one of Mary Ellen’s turtle photos and took it to work with me so I can recall my adventures with the turtles anytime I want.  You can imagine how calming it is.

Our week of pampering and adventure continued when we drove our golf cart up to the 13th hole of the golf course to watch the sunset…how romantic!  hahahaha  Paulina, Janice, Joelle and I had a spectacular vista of other Caribbean islands, and the clouds in the sky added a texture that somehow made it even more breathtaking.

But the beauty doesn’t end there.  The company arranged for dinner on the beach, and it was an experience I think I shall never have again in this life.  We were the only ones there, sitting at a long table, a few yards away from the water.  We drank, we ate, we were most definitely merry.  I enjoyed everyone in the group, and I dare say they want Paulina to bring me back next year!  :)  (Um, by the way, Paulina, how are you quotas?  Nose to the grindstone, my friend.) :)

Then there was the casino…thank you, Mary Ellen and Glenn, for your blackjack tips.  There were times I did well, and times I did not, but I learned that I enjoy blackjack.  I’m sorry I can’t say this helped me out when I arrived in Vegas a few days later.  In fact, I did rather poopy in Vegas, but it was fun nonetheless.

We were there celebrating Tiso…his 30th birthday and his deployment this June.  I think the photos speak for themselves.  It was a busy few days, and it was a lot more fun than the last time I was in Vegas when I was 18 and sat in the food court writing postcards while Ronnie played blackjack.  hahaha  Unfortunately, my parents couldn’t join us because my dad went and ruined everything when he had to have back surgery.  hahahahahahahaha Look who’s talking!  I’ve ruined more events than I can even count!!  My dad, by the way, is now officially……..retired!!!!!!  Many of you already know this, but in case you didn’t, he decided a few weeks ago.  Although it’s not the way he dreamed of doing it, he’s excited nonetheless.  I would like to share with you the letter he sent to his patients.  I think it says a lot about the kind of man and physician he is, and as always, I’m so proud of him:

Dear patients,

It is with great satisfaction and a sense of pride that I announce my retirement effective immediately.  There is nothing that I could have done during my life that could have provided as much personal and professional reward as the practice of cardiology.

While everyone at my age may contemplate retirement, the decision was accelerated recently by unexpected major back surgery.  A rare but large cyst had developed in my low back resulting in weakness in both legs.  Five weeks after surgery I am walking unassisted and working hard at regaining some of the motor strength in my legs.  Retirement is bittersweet.  The sweetness is of course the coming of some personal time well-earned, while the bitter is the loss of patients with whom I have become close and changes in my own personal identity as a cardiologist in our community.

Saying goodbye is very difficult for me.  Over the past thirty-seven years I have developed a sense of friendship with many of you as you asked for my help during difficult and stressful times in your lives.  Medicine cannot be truly successful without the cooperation and participation of the patient, and I feel especially fortunate to have so many patients who embrace the idea of joint participation in their health care.  Over the years I have aggressively focused on the prevention of heart disease, and many of you have followed a comprehensive course of lowering risks for future cardiac events.  I encourage you to continue to do so.

As the world of health care changes, cardiovascular disease presents ongoing challenges for physicians and patients.  I realize that my retirement presents you with a decision regarding finding a new cardiologist.  I am pleased and confident in recommending Rogan and O’Brien Cardiovascular Associates for your continued care.

I am blessed to have enjoyed a career which allowed me to go home each night and know that I have made a difference in someone’s life.  I wish you good health.

With sincere gratitude,

Bob Matthews

So a new era begins for my parents, and I look forward to watching them flourish.  And now, please raise your imaginary (or real, if you happen to be drinking and reading :) ) glasses to Dr. Robert Matthews and Carol Porter, RN!  You touched the lives of many, often without realizing, and your kind and healing ways will be forever remembered by all.  In the words of someone else (anonymous), “May the dreams of your past be the reality of your future”.

Speaking of future, I signed up for two Team in Training events this fall!!!  I will be walking the VA Beach Half Marathon as well as the Nike Women’s FULL marathon in September and October, respectively.  Stay tuned for fund-raising inquiries.  :)  Fall kickoff is next weekend, and I will be happy to be among the many picking up their new TNT jerseys and practicing our signature cheer……..GO TEAM!!!!!!!!!  Boy will it feel good to once again attend kickoff as a participant.

Life just generally feels like it’s coming together.  I’m working, and I’m really enjoying it.  Our new website is up, and it looks great…there are a few kinks here and there, but I think you’ll like it:  http://www.side-out.org/.  I’ve even posted some blogs!

I’ve also…drum roll, please…joined match.com!!  And as a matter of fact, I have a date tomorrow…what do you think about THAT?  It all feels so normal.  :)  I wondered if I would ever feel that way again.  I am torn about how to introduce my cancer self to dates, but the fact that I am able to date is so…I don’t know…healthy.  I wrote a post for Side-Out this week that’s not published yet, and I figured I’d share it with you because this post isn’t long enough yet (hahahaha), and I know how you like to read the details of my feelings.  :)  Hey, even if you don’t, it’s just too bad!!  You ready?  This might be a tough read (as I was told by my mom):

I recently joined an on-line dating service.  I’m 32, I’m decent looking, I have a job I enjoy and family and friends I love.  My motto is “go with the flow”…well, more specifically, my e-mail tagline is “When you come to a fork in the road, take it” (Yogi Berra).  But I’m wavering a little bit at this fork.  I ended up telling a guy over a text last night that I’m a two-time cancer survivor.


In my defense, he had asked me why I was still single if I’ve lived in this area my entire life.  He asked this in a teasing way, but when I read it, my heart sank.  I told him I used to be shier than I am now, that I haven’t ever worked in an environment conducive to meeting single men, and then I put it all out there, the single most pertinent reason for my absence from the dating scene:  I’m a two-time cancer survivor.  I felt as though I would be lying if I didn’t mention this to him, because, after all, I’ve been dealing with leukemia in some form or another for the past five years.


My secret was out.  I waited to hear back from him, and I did.  Part of me hoped he would write back “Good for you!  Congratulations on your newfound health.  So anyway, about this date…”, but the rational me knew that wouldn’t be a practical answer.  I know that, however laid back I am about my cancer, others perceive it differently, especially when they are just meeting me.  My sister (the marrow donor) once teased me, implying that I went around saying “Hi, I’m Julie.  I had leukemia.”  We laughed as she pointed out how awkward this can make people feel, although obviously that is now how I intend it.


When he wrote back, he mentioned something about how if nothing else comes of this, it’s always nice to meet good people.  I know I was feeling overly sensitive at this moment, but I couldn’t help but think he wrote this because I told him about my cancer.  I sat there a few seconds and I was struck by a sudden sadness at my whole predicament.  Those who know me know I’ve never considered cancer a predicament.  I took each day as it came, and I always found reasons to smile and look toward the future.  Even as I’m writing this, I’m tearing up because I am only now contemplating what cancer took from me.

It took a sense of normalcy, it took prime dating years, it took my ability to have children.  I discovered just before Christmas that treatment put me into early menopause.  This represents another hurdle I will come to in my dating life, but it is something I do not intend to share until I’m in an established relationship (let’s hope they don’t read this blog! ).


So I worry.  I know I will find that great guy who will accept and love me “just as I am” (as Bridget Jones would say ), but how do I best represent myself when I’m meeting new dating prospects?  Do I hit them with the info right off the bat or do I hold off until they see me as someone special with whom they want to spend more time?


I will always be grateful for what I gained from life with cancer, the most important being life in its simplest form.  I am alive, I learned what it is like to face the possibility of death and I can always apply perspective to situations that may otherwise be overwhelming.  I hope someday soon I get to practice applying that perspective when I’m complaining about something my boyfriend did.

And there you have it.  Despite the sadness in that post, I am truly happy right now.  I am living, and I mean that in the deeper sense, not the literal.  Indeed, I do exist, but what matters more is that I appreciate, I am grateful, I am content.

I feel so secure in this contentment that I am in the process of stopping my Lexapro.  For two years, it helped me to focus and to lessen my worries during a difficult period of my life, and I am ready to leave it behind.  So much happiness awaits.  But I will always remember, “the soul would have no rainbow had the eyes no tears” (John Vance Cheney).

Enjoy the photos and the link below…an extraordinary woman on a remarkable journey finds inspiration on the way.

http://www.examiner.com/x-42591-Knoxville-Pug-Examiner~y2010m4d2-Donations-pour-in-after-rare-whale-joins-onewoman-breast-cancer-awareness-marathon-Video-Photo