Julie’s Blog

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.

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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

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

How do people do it?  I realized a few years ago (before the big L ) that balance is the secret to life.  Well, I’m feeling supremely unbalanced right now.  Here is what I would like to get done in a day…please share any advice you may have about executing the following activities:

• shower
• prepare and eat three meals
• play with Jameson and Guinness
• walk Jameson and Guinness
• either swim/lift weights/do work-out video
• drive to and from gym
• work 10-6 Monday through Friday
• drive to and from work
• run random errands
• drive to and from errands
• relax (watch some tv, perhaps a little reading)
• talk to friends and family
• sync my phone
• write in my blog
• sleep

When I write it in list form, it doesn’t seem completely undoable, but let me now detail my current daily routine:

• shower (most days )
• play with pups for 3 to 5 minutes
• leave house with 10,000 bags (”to do” items for my lunch break, my mom’s laptop, my weighty purse, my lunch (usually)) at 10 AM…remember, I’m supposed to be at work by 10 AM.
• eat English Muffin in car while driving
• maybe make a phone call or two on my way to work to catch up with people
• make hot cocoa at office and break out the rest of my breakfast (yogurt)
• work (I usually do not accomplish my lunchtime “to do” list.)
• drive home or run errands
• arrive home between 6:45-8 (or later if I ran errands…this week, it’s pretty much been 9 PM)
• it’s dark outside…no dog walks (we don’t have sidewalks in our neighborhood)…sometimes we have a few minutes of nighttime ball/frisbee throwing, but not often
• eat dinner (whatever my parents made or I bought on the way home OR cereal)
• fall into chair/couch and stare at (not merely watch) the TV, sometimes for three hours
• go to bed

Hmmm…notice how I missed several key activities?  Now you know why my blog posts are few and far between.  I need to sit and stare at my list of daily goals and figure out a routine that functions well for me.  I mean, I’m single and I don’t have any children…my life will be complete chaos when that changes if I don’t get myself under control now.  One important change I can make:  wake up earlier.  Basic, I know, but it’s key to feeling better about myself.  Do you feel like you’re having déja vu?  Yup, I’ve written about the whole routine thing before…probably many times.  It’s a struggle, but it’s a good one to have to deal with.  As Lori wrote to me when I told her about how I created personal finance Excel documents, “it’s a good place to be”.  I feel so normal logging my spending, making my lunch for work every day, sitting in traffic, getting a paycheck.

And speaking of, I haven’t told you yet that I am now working full-time for The Side-Out Foundation!  I even have my own office!  I’m currently in the process of organizing the room so it doesn’t look like I’m working out of a storage closet…it’s a big task, and I’m earning my new space. 

In other news, I had another bone marrow last Friday and my new marrow looks happy and leukemia free!!  Woohooo!!!!  Thaaaaaaank you, Laura!  It was wonderful to catch up with Dr. Kales.  Just seeing him relaxes me.  You know, whenever I have a bone marrow, weeks before it takes place, I constantly ask myself “What if the leukemia is back?”  I worry, but I keep up with everyday tasks.  I remind myself that I can do visualization, I can exercise and eat well, but I cannot change the physical state of my body beyond those things.  Eventually, I feel resigned to the fact that if it comes back, I will do whatever I have to do.  Not having complete control is at once freeing and terrifying, and I guess that’s what you learn when you become a patient.

Unfortunately, my dad is going through this right now.  He was admitted to the hospital today for emergency back surgery (which will take place tomorrow).  He started having back problems last fall, and received CT-directed injections to relieve pain.  He’s had several since then, but the last one a few weeks ago did little to nothing to alleviate the discomfort.  Last weekend, his legs started feeling numb and he was dragging one of his feet.  With the help of a walker he was able to maneuver around the house and various doctors’ offices, but he couldn’t work.  Today he needed a wheelchair to get into the neurosurgeon’s office.  I know he’s scared, but he’s also relieved to be in good hands.  It probably sounds harsh coming from a daughter, but I told him “there’s not much we can change now…you just do what they tell you to do.”  That seemed to bring him comfort.

I am so thankful for my ability to view the world and its trials in such a way.  I would much rather my dad not to have to go through this tough surgery, but when I hung up the phone after saying that, I realized that my cancer experience taught me about the importance of acceptance and will of spirit.  I will never say I’m grateful for cancer, but I can absolutely testify to the fact that it had some positive effects on the way I live my life.

…look at me…going on and on about myself again when I need to be focusing on my dad!!  Please send good thoughts and wishes his way (and to my mom too because, although she certainly has the caregiver role down pat, she can always use the good vibes ).

Well, I guess that’s about all for tonight.  I don’t even know if anyone is reading this blog anymore because I’m such a slacker blogger…well, I’ll let you in on a little secret.  I write this blog for myself as much as I do for all of you.  There I go again…being selfish!! 

I hope you have a wonderful weekend!  I’m quite excited about the rain in our area–my windows are open and I’m ready to sleep to that heavenly sound of rain on the windows.  Also, have you noticed that the frogs are out?  I’ve heard them the past few nights.  Spring’s a comin’!!  Don’t forget to turn your clocks ahead this weekend!

Love,

Julie

PS Below are some links I wanted to share with you…they’re recent articles written about a new research trial Side-Out funded, and I thought you might be interested in checking them out:

http://www.washingtonpost.com/wp-dyn/content/article/2010/02/20/AR2010022000066.html

http://www.genomeweb.com/proteomics/clinical-trial-using-proteomics-technologies-personalized-medicine-approach-brea

This link is one I heard about on NPR…I think everyone should fill it out…just think how much easier it will be when you fill out paperwork at your doc’s office!!  No more calling your relatives from the waiting room to see what relative had what disease…check it out:

https://familyhistory.hhs.gov/fhh-web/home.action

And finally, some inspiring quotes I happened upon while looking for quotes for Side-Out:

“A good example has twice the value of good advice.” - Unknown

“I’ve learned that you shouldn’t go through life with a catchers mitt on both hands.  You need to be able to throw something back.” - Maya Angelou

“You must be the change you wish to see in the world.” - Mahatma Ghandi

HAPPY WINTER EVERYONE!!!  For those of you who are not snow lovers, well, you wouldn’t want to be in the DC area right about now!  :)  I, on the other hand, say bring.  it.  on.  We’re due for another storm Monday, but it sounds like a baby storm…only 8 inches or so.  Yah, that’s right…after almost three feet, a few inches seems like nada.  Be prepared for snow pictures!  If you have Facebook, you will recognize many of them.

All is going well here.  My appointment with Dr. Orloff was uneventful.  My counts are excellent.  I got my final polio vaccine, and I requested a bone marrow biopsy.  March will be six months since my last biopsy, plus I’m traveling with Paulina to the Grenadines, and you remember what happened the last time I traveled with her…hahahaha…wow, I have a sick sense of humor.  In case you don’t remember, I was with Paulina when I got sick in Quito, and no, I’m not really getting a biopsy because I’ll be traveling with her soon, but rather because it makes me feel healthy and puts my mind at ease, mostly because of the latter.  :)  I’ve had this strange sensation the past week, and the only way I can think to describe it is that I feel my heart.  Occasionally the beats are irregular.  I’ve had this feeling before, and I know it doesn’t mean the leukemia is back, but it still makes me nervous.  A friend I met through the Leukemia and Lymphoma Society relapsed recently after having a transplant from her sister several years ago.  It’s hard to read that and not worry about myself.

When I asked Dr. O for a biopsy, he asked me to remind him when my last one was, and when I replied “October”, he replied “Well, let’s do another one in October, so it’s a year”….to which I replied “I prefer six months”.  He shook his head and said “Jesus”, a small smile forming on his face.  And guess what?  He asked if I would like for Dr. Kales to do it, so I get to see Dr. Kales again!  You all know how special he is to me, and you also probably remember that I prefer him to perform all my biopsies.  Let everyone talk about how I’m the weird patient that requests biopsies!  When I get that “all clear”, it’s a green light to continue dreaming about the future.

And speaking of the future, I am counting the months until Team in Training begins its fall training season.  In the meantime, I am going to be an honored teammate!  They asked if I would assume this role for the summer walk team, and I am so excited!  An honored teammate is meant to inspire participants who may not have a personal link with leukemia or lymphoma.  I submitted a story about and a photo of myself, and they will receive these in packets at the season kick-off tomorrow morning.  My responsibility is simply to encourage them during trainings (when I can), and to remind them of the reason for their fund-raising.  I thought I’d share with you the story I sent them, even though you should be pretty familiar with it by now!

I bet you’re looking at this photo and thinking, “wait a sec…this girl had leukemia?  She looks pretty darned healthy to me!”.  Look again.  This is the photo of a two-time leukemia survivor visiting the Skyline Drive for the first time since her relapse…a 31-year old woman ecstatic to be in a world of campfires, tents, hiking boots and wildlife.

Nine months before this photo, I lay in a hospital bed in Seattle receiving a transfusion of stem cells from my sister, Laura, hopeful that her cells would replenish my battered bone marrow and give me the “gift of life”, as she so often refers to it.  When my acute myelogenous leukemia returned after three and a half years of remission, I was shocked.  I was angry.

I was also lucky.  Lucky because I knew researchers made advancements with treatment of the disease.  Because Laura was a perfect match.  Because I knew all of you were out there raising money to benefit patients like myself.  I reset my priorities and once again went into patient mode, focusing all my energy into getting healthy.  One mile around the ward each day?  No problem!  After all, I walked the VA Beach Half only nine months ago in two hours, fifty-seven minutes!

The day I left to meet the TNT bus driving down for the half marathon, my parents gave me a necklace that read “You Never Walk Alone”.  My diagnosis and treatment brought my close-knit family and friends even closer, and I thought of them with each swing of the arm, breaking my form occasionally to reach up and touch the engraved words on the necklace.

When I relapsed, memories of Team in Training brought me great strength, physically and mentally.  I recalled all the purple shirts and neon green hats in VA Beach, and I thought, “indeed…I will never walk alone”.

Thank you for walking and for continuing the efforts for others who cannot join you.  I missed two years, but I plan on coming back for the fall season!  I doubt there will be anyone on race day who will feel more pride when donning the neon green and purple.

GO TEAM!!!!!!!!!!

Fittingly enough, one of their big summer events is the Seattle marathon, a fairly new addition to the TNT races.  I feel pretty special to think they’ll be walking my Seattle streets, raising money for blood cancers, and thinking of me.  :)  I think we’ve come full circle, don’t you agree?

OK…now it’s a week later…how is it that it takes me weeks to do a single blog post?!  Let’s see…what else?  Oh! I bought my “healthy heart pass” so I can start working out again!  Last night, I went swimming for the first time in years.  Well, I got in the ocean and the pool for a little bit in Miami in 2007, but that doesn’t really count as exercise.  :)  I wasn’t allowed to be in a pool for many of the last few years because of my catheters and the dangers of germs.  Although my arms are aching now, it felt wonderful last night, just as I remember it.  It was a bit embarrassing when I crossed over the middle of my lane and right into the guy sharing it with me (on my first lap).  I apologized, and he looked at me like “What the…?!”  I caught up with him at the wall later, and explained I hadn’t been swimming in a long time.  I should have added “I had leukemia twice since I last swam laps”; then he would have felt really bad for giving me such a dirty look.  :)  hahaha  That’s right…still using the “c” card to help me out whenever necessary!  Lori pointed out that running into guys that share lanes with me could be a good way to find a date.  =)

Well, I better be heading to bed soon.  I’m pretty sleepy!

I will leave you with a few quotes I found recently…you know I’m a big quote person! Enjoy the quotes and the many photos.

Love from snowy VA,

Julie

“Never take life seriously. Nobody gets out alive anyway.” - Author unknown

“You must get involved to have an impact.  No one is impressed with the won-lost record of the referee.” – Napoleon Hill

“Some people are like Slinkies - not really good for anything, but you still can’t help but smile when you see one tumble down the stairs.” hahaha I know it’s sick, but I just couldn’t stop laughing!

The following links are just to make you smile.

http://img.photobucket.com/albums/v352/kilj00y/oFGXa.jpg

http://www.neoseeker.com/forums/18/t1477691-police-playing-in-snow/

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So this is what it feels like to work full-time?!  It’s Friday, around 7:45, and I’m in my PJ’s.  :)  Surprisingly, I’m quite content.  I’m watching “Jeopardy” with my padres and pups (including baby Indie).  Sure, part of me longs to be out and about, meeting new people and celebrating youth, but this’ll do for now.  There’s a bowling alley near my office (wow, it feels weird to write that—”my office”!), and every time I drive by, I tell myself, “I have to get a group of people together so we can bowl”, and after I drive a few more miles, the thought is gone.  By the time I’m home, I’m so tired I just relax with dinner, wine and my fam. Remember, it’s been seven years since I’ve worked full-time (yup, seven!! Twinbrook Florist was my last full-time gig.).

And now it’s Saturday.  I couldn’t even finish writing my entry, I was so sleepy!  I’m really enjoying working though.  It’s my first office experience where I don’t check the clock every fifteen minutes, probably because I’m challenged with interesting tasks.  I’m helping with the content of a new website they’re creating, and I assist with various jobs around the office.

Geez…this is ridiculous.  Now it’s Sunday.  I had writer’s block.  :)  It was a wonderful weekend.  You know, I have to take advantage of my weekends now since I’m working!  hahaha Notice how many times I reference the fact that I’m working right now?  I guess I’m pretty proud of myself.  Last night I went to see the US Army Men’s Chorus.  Rachel had read about the concert, so we drove to Vienna to check it out.  My guy (remember how I wrote about hearing the chorus previously and one of the men sang “Precious Lord”, my favorite hymn?) sang a solo, and his voice was just as I remember it.  The song couldn’t compare to “Precious Lord”, but I didn’t think a church was a good venue to yell out what songs you want them to sing.  :)  Thanks to Rachel, I have a recording of him singing it, so I can listen whenever I desire.

Today I met Connor, the newest addition to the Horio family!  He was born about two weeks ago, and boy is he a good-looking baby (see photos below–yah, of course I took photos!  You should know that about me by now. ).  Maya and Brant are going to be such wonderful parents.  Connor already has an impressive wardrobe and a very stylish nursery, complete with a mural of a mountain in Hawaii (painted by his father).  He seems like quite the little cuddle bug, and he’s a lucky boy to have a big, loving family surrounding him.  I can’t wait to hang out with you again, little buddy!! (oh, and you too, Maya and Brant and Grandma. )

Getting back to last night’s concert, the most moving song was one they saved for the encore, “Battle Hymn of the Republic”.  I tend to get emotional with most patriotic music, and their version was simply gorgeous.  Now I think I’m especially emotional because patriotic music makes me think of Tiso.  He found out last week that he will be deployed to Iraq, not Afghanistan.  We’re planning on having a big party for him out in Vegas.  I think I better get him to give me some tips on poker before we head out!! 

Here it is, 10:30 PM Sunday night, and guess what?  It’s about bedtime.  This whole work thing feels surreal in many ways.  Not surprisingly, I’ve been pondering work and jobs, etc.  This is the conclusion I’ve come to:  I do not want to bring work home with me.  I do not want to have incredible responsibilities.  I want to come home and play with my pups, visit my family, hang out with my children (someday ), catch up with friends. I want to make money.  Do I have a lack of ambition?  Am I merely average?  Or am I enlightened?  These last five years were not wasted years.  In fact, they were quite formative.  My priorities are set.  But I still ask myself, should I be doing more?  I always thought I’d be a professional, deeply involved in a career. Right now I am at a loss with regards to my future.  What is it exactly that I was meant to do?

I also feel torn.  I know my mom teases me about it (and frankly, I think she gets a little disgusted by my worrying), but I feel guilty leaving my dogs all day, especially in the winter when there’s no light to shine down so we can play when I get home.  They’re my best friends.  They’ve cuddled with me and helped me through five years of some pretty crappy times.  They’re used to me being home.  I don’t know if I wrote this before, but apparently Jameson had a very difficult time when my mom and I were in Seattle.  He obsessed about reflections and chased streams of light that filtered through the window.  He still does this, although they tell me it’s not as bad as when we were gone.  I could never be as good a friend to them as they’ve been to me, although I’m pretty sure that’s true with any pet and his owner.  :)  Still, I owe them.  I owe them walks and cuddles and playtime.  They still get this, but it’s limited now that I’m at work during the day.  Don’t worry…I’m not becoming crazy or hysterical or anything.  I’m not living my life for my dogs, but I miss them and I feel guilty. Imagine what I’ll be like when I have my own child!  :)  It might be hard to understand how attached I am to Jameson and Guinness.  Just remember that I’ve been home with them for about four years.  When everyone was at work, they kept me company.  Our relationship is indeed symbiotic.  I need to somehow figure out how to balance a job with caring for them.

OK, enough about that.  Considering it’s now Tuesday, I think it’s time I wrap up this blog post!  Tomorrow I go to my dermatologist so she can take out the stitches in my leg (she removed the margins from that irregular spitz nevus last week).  Thursday I go to see Dr. Orloff…I’ll let you know how everything goes!

One last thing.  Andrew, I’m sure you received this as well…last week I got a letter from the Hutch giving information on a new study about survival after bone marrow transplants.  One section read “…though you know better than anyone else the toll that your illness and treatment have taken, the comparison of your experience to those who have not gone through transplant may be unsettling for some of you.”  Well, that’s all I needed!  I skipped the rest of the letter and headed right for the study!  How long am I going to live?Here’s some of what the study discovered:

“Before bone marrow and stem cell transplants became standard therapies, hardly anyone survived blood cancers.  Today, a new study shows, 80 percent of patients who have transplants and survive their first five years go on to survive for at least another 15 years….the study also shows that survivors continue to have a lower life expectancy than the general population.  In the general population, people who are now 20 years old would be expected to live to an average of about 77 years, and people who are now 60 years old would be expected to live to an average of about 80 years…a group of five-year survivors who are now 20 years old would be expected to live to an average age of about 60 years, and a group of five-year survivors who are now 60 years old would be expected to live to an average age of about 74 years.”

Hmmmm…I never really thought about how the transplant would change my life expectancy.  I figured if I lived to the magic number of five years post-transplant, I was in the clear!  Of course, all these numbers are relative.  Every individual is different, and your overall health is important to take into account. Here are some positives for me:  I don’t smoke, I exercise (well, not too much right now, but when I get paid, I’m planning on buying a Healthy Heart pass to use at the county rec centers), I eat well, I’m not a big drinker…you get the idea.  Despite that, I’ve been exposed to toxic chemicals, radiation and a transplant, and all of those things can result in complications later in life which might account for a shorter life expectancy.

Nevertheless, I’m not worried!  Honestly…I think the study is interesting, but statistics are statistics.  It’s informative to read and then it’s time to move on. So I’ll continue moving on and building my life.  Go with the flow, forever my motto.

Happy 2010!!  So, what do you think?  What does this decade hold for you?  Any New Year’s resolutions?  I’ll admit I haven’t thought too much about any for myself.  I guess I pretty much know what’s most important:  starting a career, getting in shape, finding a date.

I’m excited to report that I’ll be working with my neighbors this month as they expand their foundation to support breast cancer research and treatment:  https://www.side-out.org/.  The foundation brings awareness to breast cancer though the sport of volleyball, and teams throughout the country raised over one million dollars in October, funds that will go to further research and support for patients.  I’ve learned a great deal about the foundation simply by talking with my neighbors, and I know working with them will be a rewarding experience.  Despite the fact that it’s a one-month trial basis, I’m nervous.  My time is no longer completely my own, and thoughts about new responsibilities weigh on my mind.  Yes, to put it simply, I’m scared to start working.  Certainly, part of me is looking forward to it, but this exact second, as I type, I’m feeling overwhelmed.  Nonetheless, it’s a pretty darn good way to start the year.

For so many years, I felt sad around New Year’s.  I’m not sure why, although I know part of it has to do with the fact that it marks the end of the holiday season.  I’ve also been known to resist change, and what presents more drastic change than a brand new year?  Last year and this year, I felt differently when New Year’s came around.  It’s cliché for health crisis survivors, I know, but I’m just happy to be around for another year!  From a rooftop in Seattle watching fireworks over the Space Needle to the warmth of a friend’s home in Virginia…I think I rang in both years fittingly, and I’m looking forward to making some remarkable memories this year.

I hope everyone is enjoying their first days of 2010!  Do you feel like you’re in need of a little inspiration to jumpstart your year?  I came upon this website the other day, and I wanted to make sure I shared it with you:  http://www.teamwinterblog.org/.  Have you heard of her before?  You have to watch the video; Winter’s story teaches us strength through adversity, an appropriate theme to encourage positive thinking and acting in the new year.  In another post on the website, I read that her father passed away in March, 2009.  Despite the tragedy of the situation, I am so uplifted by Winter’s dedication and courage.

After watching Winter’s video, you can check out the photos below, ones taken by my friend, Elvira.  She posted them on facebook, and they were so gorgeous, I asked if I could post them on my blog to show all of you.  So, bask in the inspiring story of Winter and the incredible beauty of our country (as seen in Elvira’s pics), and smile.  2010 is a clean slate, and you can write whatever you want as you continue to work on the story of your life.

Love,
Julie

Hey there everyone!

So, are you filled with holiday cheer?  I’m sitting here by a warm fire with my parents, my pups (including Indie!), my Aunt Barbie and my Uncle Rick.  We were singing some Christmas tunes after savoring yummy soup (famous in our house as “Ashley’s Aunt Lee’s Soup”…Ashley, I am always reminded of the Blizzard of ‘96 and our adventures in New England/New York whenever I make it!).  All the Christmas trees are lit, but presents are not wrapped yet…no worries.  I still have some hours left. :)  All in all, I’m a shining example of holiday cheer.  Except for the fact that I’m a little cranky from varous store outings…not too bad though. 

I called my oncologists’ office early this afternoon to get the results from my hormone tests.  If you recall, the tests were normal several months ago (before I went to Seattle), but the physicians in Seattle informed me that the tests were not accurate because I was still taking birth control pills to supplement my hormones.  After discontinuing usage of these pills for about six weeks, they did some more tests on my blood.  My FSH (follicle-stimulating hormone) level is 21.6, considered post-menopausal.  I found a website that points to 9 as a normal FSH level.  Basically, I will never be able to get pregnant. It’s no longer a probablity, it’s a reality.

Although I mentally prepared myself for this result, it is crushing nonetheless.  These amazing genes will never be passed on.  :)  hahaha Seriously though, I’m sad I won’t experience pregnancy and the joys that accompany it, but I’m hopeful about adoption.  First things first though…to find a husband…hmmm…hey, that’s something to look forward to!  Although I’m disappointed about today’s news, I ask that no one treat me differently.  Please don’t ever feel that you shouldn’t share your pregnancy joys, stories about your children or anything thus related.  I truly enjoy celebrating every special occasion, and my own situation will never affect my attitude toward your experiences.

Well, it’s getting later, and I’m starting to feel sleepy, and those presents won’t wrap themselves!  I feel better after sharing my thoughts with you.  No, this isn’t going to cloud my Christmas.  I’m healthy, I’m home with my family, and I’m looking forward to a year of possibilities.  When you look at it that way, it seems I should be counting my blessings, not worrying about what I don’t have.  So Merry Christmas, everyone!  Don’t forget to count your blessings too.  It makes the holiday season all the more magical.

Lots of love to all my supporters out there. 

Julie

Happy Sunday everyone!!!

It’s a cold, rainy day here in VIrginny, but you know how I love the rain, so it’s beautiful to me.  I wish it were snow though.  :)  We got up our Christmas trees this week (yes, trees, plural…remember “Daphne”, our beautiful tree out in Seattle?  She’s gracing our windowsill in the kitchen, complete with every single White House ornament.).  I even got some evergreen swags for the mantel in the living room…that way, even though we no longer have a real tree, we can enjoy the smell of the needles. 

Although, technically, I still can’t smell much right now.  And I still can’t hear much out of my left ear.  I now feel that I can empathize with anyone who has trouble hearing.  It’s incredibly frustrating!  Except in Costco…I think having dulled senses is a plus when navigating the aisles in the Costco warehouse.  I guess sometimes it’s good to be able to tune things out. 

It was annoying in a restaurant atmostphere though.  Katie, Laura, Mrs. Beha and myself went to lunch for my mom’s birthday yesterday, and it was a delicious lunch, but I think I missed half of what everyone said.  The best story though was when I went to the ENT Tuesday.  My mom came with me, and when they called my name, I didn’t even hear them!  How classic!  :)  Luckily, my mom heard, so she was able to get my attention.  By the way, Dr. O’Halloran said that my eardrum had healed over, but he did suck out a lot of “nasty gunk” (yes, that’s his term!) from my left ear.  He said there is still a lot of fluid behind my eardrum, and that the best thing to do at this point is wait.  He started me on a steroid dose pack, and said it could be six weeks before I hear normally.  I go back to see him Tuesday, so I’ll let you know if anything changed.  The good thing is I’m no longer draining all over my pillowcase, but my new favorite word is “huh?!”.

Getting back to my mom’s belated birthday celebration though, it was wonderful!  Katrina and Marc, thanks for the recommendation of “The Majestic Cafe” in Old Town….mmmmmmmmmm!!  I highly recommend it.  My mom thoroughly enjoyed her fried oysters and chicken livers, but don’t worry…there are other items on the menu!  We had to postpone the celebration since we were both feeling so poopy on the actual day of her birthday.  I didn’t even give her a birthday card until yesterday…talk about a slacker daughter, huh?  I think Carol understood.

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Here we are a week later, and there is lots of snow on the ground, so I guess my wish came true!!  I apologize once again for being a slacker blogger.  Good news though…I’m feeling much, much better.  I went back to my ENT Tuesday, and he put me on Ciprodex, antibiotic steroid ear drops.  I still hear occasional squeaks, crackles and whooshes, but my left ear is pretty much out of the mountains!  Before long, it will be right back at sea level with my right ear. 

Unfortunately, my dad’s sick now.  He started feeling fatigued on Wednesday, and his temperature shot up.  He had several cases of shaking chills, but today he seems to be feeling much better, aside from lingering headaches and a lack of energy.  He’s disappointed that he can’t go out and play in the snow, but as you can see below, I took lots of pictures so he could experience it from the warmth of his chair by the fire.  Let me tell you, there’s no better spot than a seat by the fire…and it’s no gas fire, it’s the real thing!!  You can’t beat it.  Thank you to Ethan, Glenn, Tyler, Steve and Eric for splitting so much wood to keep us warm!

Poor Ethan broke his arm a few weeks ago when he fell off the top of a bunk bed.  He says he has a cool neon green cast, and I’m betting it’s already full of signatures!  Ethan and family have been traveling back and forth to Pittsburgh to visit Noah, Ethan’s older brother, who is in a hospital there.  Noah has severe autism, and they are adjusting his medications, something which must be done as an in-patient.  Please keep Tracie, Steve, Noah, Ethan and Addie in your thoughts.  Noah is doing very well, and hopefully he will be home for Christmas.

I also ask that you keep Tiso and Laura in your thoughts.  Tiso is being deployed to either Afghanistan or Iraq in June.  He will be there for a year.  He was in Kuwait and Iraq several years ago, and the Army Reserves called him up a few weeks ago.  Tiso, thank you for your service to the country.  It’s challenging to come up with some positives for his deployment, but I have a few.  Laura mentioned that our cousin Jeff was the only one to actually respond to the news with a positive statement:  “At least they gave you a lot of time to prepare for deployment.”  I pride myself on thinking of the positives, but I just couldn’t think of any when Laura told me.  I was shocked, worried and scared.  But I’ve been doing some thinking and this is what I have:  Tiso, you’ll have two weeks off, and you and Laura talked about meeting up in Italy or Greece, and that will certainly be a wonnnderful experience!  Also, with technology, you’ll be able to keep in touch with all of us (lucky you!), not to mention being up-to-date on your favorite TV shows.  We’ll send you all the good DVDs too.  What’s that?  You want lots of Lifetime movies?  Sure, no problem!  hahahaha  Jeff’s comment about having more time to prepare this go-round is quite accurate.  I think it’s helpful for both you and Laura to have several months to get ready, not only to get used to the idea of you being away for a year, but also so you can work out all the details of day-to-day responsibilities.  Another good thing:  you know more about what to expect with this deployment since it’s your second time.  I think that must be a good way to help you mentally prepare for the trip.

All that said, I’ll miss you, and I wish you didn’t have to go, but we’ll take good care of Laura and little Indie Bindi while you’re over there.  Indie loves Camp Matthews!  She’s sitting beside me on the couch right now.  I have to say though, she makes it difficult to type when she lays her head on the keyboard.  She’s been having a wonderful time in the snow…she loves diving and searching for tennis balls buried deep in the drifts.

The snowstorm was pretty spectacular, don’t you all agree?  If you’re not in the VA area, we received about two feet of snow this weekend, and I can’t stop thinking of that song “It’s a Marshmallow World”.  The pups crack me up, jumping their way through the snow and diving for balls.  When we come in, they’re totally exhausted.  I’m betting they’re dreaming of running in the snow as soon as they close their eyes.

I know what I forgot to tell you!  I met with Dr. Orloff Thursday.  My counts were good, although my neutrophils were down to 1.1.  He thinks that may be due to the bad flu/cold I had.  I told him I’d been worried about relapse lately, but he assured me that nothing in my blood numbers suggested that.  One of the reasons I’ve been worried is because of my flu/cold.  If you remember, each time I was diagnosed, I had a bad cold along with ear issues.  I’ve also felt my pulse in my head whenever I lay my head down on the pillow…and my pulse has been more rapid than usual.  My hemoglobin and hematocrit levels are normal though, so that calmed my worries a bit.  The worry of relapse certainly isn’t something that fades quickly.  I just keep notes of all my aches/pulse rates/cold symptoms, and pass them along to every doctor I see.  :)  Dr. Orloff didn’t see any need to do a bone marrow aspirate.  I think I’ll request another one in March…that will mark six months since my last biopsy out in Seattle.

In the meantime, I’m going to enjoy the snow, have a merry Christmas and happy new year, and plan to make year 32 be the best year yet.  That’s right folks!  I’m now 32!!!  Wow, that sounds old, doesn’t it?  Thanks for all the wonderful birthday wishes!  Birthdays have a much greater significance now, not surprisingly.  Thank you Laura for the greatest gift of all…let’s say it together everyone…the “GIFT OF LIFE”!!!!!

Well, I better get going.  I’m going for a walk in the snow…I’ll be sure to get more pictures (whether you want to see them or not!!). I’ll leave you with this article…I think it’ll make you smile.  http://www.nbcchicago.com/news/local-beat/Neighbors-Ditto-Display-Looks-Like-a-Bright-Idea-78523157.html?yhp=1

Lots of love,

Julie

HAAAPPY DECEMBER, EVERYONE!!!!!

Guess what?  I still have that damn cold.  I know, it’s been over a week!!  A new symptom developed since I last wrote, something to add to all this fun.  :)  I burst my left eardrum.  Yup, can you believe it?  Now it’s full of drainage.  I went to my primary care both Tuesday and Thursday of last week, and they switched me from the Z-pack to Levaquin, which I’m used to taking from all my treatment.  It’s a stronger antibiotic, and it’s fared me well in the past, so I’m hoping for a cleared-up cold any day now!  Yup, any day…….in the meantime, I’m watching every Christmas movie out there on Lifetime and the Hallmark channel.  If you need any advice as to which ones to watch, I’m your girl!

Wednesday through Sunday, my mom’s kept me company because unfortunately she has a bad cold as well.  So we laid here together with the pups (who are thankful when Judy comes to play with them Tuesdays and Thursdays!), consumed lots of Italian ice and drank lots of Coke (never ever forget the power of Coke…I think you should recall that from many previous posts where I attest to its healing abilities).  Despite feeling, well, crappy, I loved watching the snow fall yesterday, and I donned my Dad’s old winter coat to throw a few balls to the pups.  After about five minutes, it was back inside by the fire with all the freshly cut wood courtesy of Dad, Steve, Eric, Ethan, Glenn and Tyler…thanks so much, guys!!!  You did a spectacular job!!!

I canceled my appointment with Dr. O last week because I should know better than anyone else that I do not belong near anyone undergoing a transplant.  I rescheduled it though, and I will meet with him on the 17th.  I also rescheduled the excision of the mole on my knee.  I think it’s more important to get rid of this infection right now.  Tomorrow, I’ll visit with my ENT, and hopefully we can move forward and clear up all this crap.

I’ve been thinking though…remember when I said I wished anal fissures on anyone who crossed myself or a loved one?  Well, I’ve modified that.  Now I wish them an anal fissure and my present cold (including ear drainage) at the same time.  Isn’t that in keeping with the holiday spirit?  :)  Lucky for you I wasn’t blogging back in ‘05 when I had the fissure, but you probably remember me writing about it more recently.  It’s not one of those treatment side effects whose memory fades with time, no siree bob!  Anyway, the moral of this story:  don’t make me mad! 

On a happier note, how’s the holiday decorating coming along for everyone?  Ours is a bit delayed what with all the colds going around.  Hopefully we’ll get stuff up this week!  I’m needing some holiday cheer!!  I have to get out of this house and be among the crowds shopping and eating and feeling jolly.  Please, Dr. O’Halloran, fix my ear tomorrow so I can enjoy my holiday season to the utmost! I’ll keep you posted.

Aside from requesting a cured eardrum, I’d like to add another request.   I have a new friend on facebook and her granddaughter, Jade, will be six on Christmas Day.  Jade’s currently in the hospital being treated for acute lymphocytic leukemia.  From what her grandma tells me, she must be one of their favorite patients!  The nurses taught her how to draw her own blood from her catheter, she opened up her room as a nail salon, and she just generally seems to have a bright and spirited personality.  Please keep her and her family in your thoughts.

I’m sending all of you happy holiday season wishes!!  Don’t forget to check out all the great flicks on Lifetime and Hallmark!

Lots of love,
Julie