Searching for Balance.

Written by JKM on March 12th, 2010

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

Written by JKM on February 20th, 2010

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! :)

“When things go wrong as they sometimes will,
When the road you’re trudging seems all up hill,
When the funds are low and the debts are high
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don’t you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;
Don’t give up though the pace seems slow–
You may succeed with another blow,
Success is failure turned inside out–
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you’re hardest hit–
It’s when things seem worst that you must not quit.” - Unknown

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/

http://i.imgur.com/yymWC.jpg

Click to continue »

Written by JKM on January 20th, 2010

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.

Haaaaappy New Year!!

Written by JKM on January 2nd, 2010

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

Happy Almost Christmas!!!!

Written by JKM on December 24th, 2009

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

Written by JKM on December 20th, 2009

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

Written by JKM on December 8th, 2009

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

Written by JKM on November 30th, 2009

To my excitement, the “service” light came on in the VW a few days ago, so here I am at my favorite dealership, enjoying some coffee and catching up on all my to-do’s.  I just hope the oil change lasts at least an hour so I can accomplish something!  I’m a bad, bad blogger, and I apologize for that, but I’ve come to the conclusion that my last post was so comprehensive, that I haven’t felt a pressing need to write.  That said, I’ve missed writing.  You’ll be happy to know (or you better be, at least!) that I’M BAAAAAACK!!

Well, kind of.  I wrote that first paragraph over a week ago, before all the excitement of Thanksgiving.  Unfortunately, they finished the oil change much quicker than I had hoped.  Now here we are and it’s the Monday after Thanksgiving.  Our holiday was wonderful, although we dearly missed our Georgia contingent.  We’re looking forward to a summer visit!!

Since I’ve last written, I received six vaccinations (I’m just missing the swine flu shot which isn’t yet available at my doctor’s office).  All went well save a minor reaction to the polio vaccine (an annoying rash on my hip near the vaccination site).  I took my last Acyclovir, so I’m not on any specifically transplant-related drugs anymore!  Woohoo!!!  That’s a big deal.  Right now, though, I think I need to be pumped up with some meds ’cause I have a very annoying cold.  I had a low-grade fever Friday night when everyone was here for shrimp, er, pasta night (we simply couldn’t have shrimp without you Georgia folks–not only because you bring it, but it just wouldn’t feel right).  Saturday, I laid around with a sore throat and stuffy nose, popping Tylenol every few hours.  Sunday morning, I woke up with a fever of 101.4, and I felt nauseous.  It was tough staying upstairs in bed while everyone else was enjoying their last hours together downstairs.  Ronnie and Kathy commented that I was like the godfather, because everyone kept coming upstairs to visit me.  hahaha  I did have quite a raspy voice… :)  I’m currently on a Z-pack, so cross your fingers that this crappy filled-up nose and sore throat will hit the road!

I made some progress on the job front.  I met with PR Rachel, and she was wonderful.  She thought that, given my background and interests, I might be perfect for PR.  Thoughts of a career constantly flutter through my brain, and I’m wondering if I might enjoy something in immigration, with the United States Citizenship and Immigration Services.  I found a few job descriptions that sound like PR for immigration.  I have three people I plan on contacting who may be able to give me more information about what a position in the immigration field is like.  If anyone has any suggestions, advice or possible contacts for an immigration career, let me know!

I came upon a sentence in “What Color Is Your Parachute” that I keep repeating:  “…a period of unemployment can absolutely change our lives”.  How true this is!  Given time to reflect upon your career choices, you might make some discoveries about yourself that ultimately present a new path to follow, and hopefully it is in a field you truly enjoy.  Once I kick this stupid cold, I plan on getting my butt in gear and making some job progress.  That will be the best Christmas present I can give myself.

I have lots of photos to share with you, but unfortunately many of them are on my camera which has been misplaced.  When I feel better, I’ll search harder, so hopefully you’ll see the Thanksgiving weekend photos soon!  I put some up on facebook before I lost the camera, so you can find some there.

I’m off to rest.  Jameson, Guinness and Indie are wonderful company, and they seem happy to rest inside with me on a rainy day.

Lots of love,

Julie

PS This is too funny…even you Obama-lovers should appreciate it!

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

23 Tubes

Written by JKM on October 13th, 2009

The Northwest coast is a land of contrasts. At time it is wild and wave-battered, at other times quiet and restful. All along its length there is variety: long, sandy beaches, steep headlands, lush pasture, rocky covers, patches of deep forest. This is a place for photographers, hikers, picnickers, campers, and for those who want nothing more than a few relaxing moments in beautiful, unpeopled surroundings.  ~Unknown

I apologize for the delay of this wonderful post, but I had extensive problems with my computer while attempting to upload all the photos.  I hope you’re comfy ’cause this is ‘gonna be a long one!  Be prepared to take your time so you’re not overwhelmed by all the gorgeous photos (if I do say so myself…and I do) and fascinating tales of our adventures in the Pacific Northwest.

You may be wondering about the title of this post…well, we’ll get to that.  It’s my teaser to make sure you keep on reading.  :)  So we’re back from our two week travels and celebrations, and those two weeks were as I imagined they would be: joyful, relaxing, renewing and sentimental.  I cannot have dreamed of a more perfect and meaningful way to celebrate one year of a healthy self.  As you know, I’ve been looking forward to this trip since January when we returned from the Pete Gross house and my “semester abroad”.

We flew into Sea-Tac on a clear Monday morning, and Mount Rainier came out to greet us.  It felt as though we never left.  My mom and I navigated the airport like experts (minus the mess of Hertz…my mom’s new motto is “Hertz hurts”.  Clever, huh?).  At first, I was disappointed to head south on I-5, because I longed to see Seattle, but I knew Olympic National Park was waiting for us, and it would bring adventures we hadn’t yet experienced in the Pacific Northwest.  As I drove, I soaked up the scenery:  the towering evergreens, northwest architecture, Mount Rainier, a crowded interstate 5.  “I’m here”, I thought to myself, “I’m actually here!!”

For Katie and me, it was the first time staying at a bed and breakfast.  We drove through the bamboo gates at Domaine Madeleine (http://www.domainemadeleine.com/), down the gravel drive to the main house.  There were flowers everywhere (as evidenced in all the photos below).  We toured our rooms, unpacked and walked around the grounds.  We walked to the edge of the backyard, and when I say “edge”, I mean “edge”!  I’m not the best distance estimator, but there was probably a several hundred foot drop down to the Strait of Juan de Fuca.  It was absolutely stunning, a setting raw and cultivated at the same time…from naturally carved cliffs to manicured gardens…perfect for photographs!

One of the reasons my parents chose Domaine Madeleine was the cuisine.  Jeri, the owner, is famous for her Pacific Northwestern-influenced breakfasts, although she describes them more as brunches.  Each morning, she served four courses of food!!!!  She always gave us freshly-squeezed juices (from grape to plum), fancy cheeses, homemade croissants and mini-baguettes, fruit, typically some type of seafood (that’s where the northwestern influence comes in!), locally grown vegetables and a dessert such as crepes or bananas flambé.  Oh, and I can’t forget the delicious coffee, another northwestern specialty!  We enjoyed the breakfasts so much that we opted for a later departure to Victoria, BC so as not to miss a morning at Madeleine’s!

One of the very special qualities of this B&B was Jeri’s ability to make each guest feel at home.  The first few days, we partook of the exquisite breakfasts with two other couples.  We fell into easy conversation, sharing stories about our families, lives and daily activities.  One couple, from Minnesota, was visiting the area after dropping their daughter off at college.  The husband, Marcus, was a physiologist from PA and had lots in common with my parents.  We loved hearing their stories.  Larry and Christine, the other couple, were from LA, and they found their way to the Olympic Peninsula after reading the book, “One Square Inch of Silence”.  I looked forward to breakfast with the four of them, wondering where our morning talks would lead.  Isn’t part of the fun of travel learning about others you meet along the way?  It always opens up new worlds, and it makes travel feel more like travel than touring.  I always loved the quote by G.K. Chesterton:  “The traveler sees what he sees, the tourist sees what he has come to see.”

We divided our days into a series of destinations, and we modified as seen fit.  The rental car allowed us freedom, and we put hundreds of miles on that silver Camry, traveling to Forks (the home of “Twilight”) on the way to the Hoh Rain Forest, visiting the Pacific at Rialto Beach, driving through the herds of elk and buffalo at the Olympic game farm, checking out the largest sandbar in the world (The Dungeness Spit).  Our  sensible silver sedan never faltered when we climbed the steep mountains that led to Hurricane Ridge, nor did it sputter when we drove up to the northwesternmost point in the contiguous United States at Cape Flattery.  It coasted down Highway 101, to Lake Crescent, onto the Makah and Quileute Indian reservations, throughout the city of Port Angeles, and then back to Seattle (not in that order).  Hertz mistakingly gave us a navigation system, which guided us each step of the way.

The best way to learn more about our experience on the Olympic Peninsula is through my photo essay below.  :)  What was most striking about the park was the variety of activities available.  You have mountains, lakes, the ocean, beaches crowded with driftwood and beautiful, wave-sculpted rocks.  Evergreens abound, but the hints of fall showed in other trees, and flowers bloomed bright in gardens.  There were wineries, pumpkin patches, lavender farms, nurseries, boat tours, a logging museum.  Cape Flattery was one of the most striking places we visited, where waters from the Strait of Juan de Fuca dug caves into the sides of the rocks.  We even saw a sea lion/seal frolic down below!  The Dungeness Spit was unique not only in its sheer length, but in the fact that the beach was framed by mountains.  The two together make for a breathtaking sight.  Hurricane Ridge was gorgeous and refreshing, even at its high altitude.  It also had the best gift shop.  :)  hahaha  I know, gifts shops are so….touristy!  Hey, I’m a traveler who enjoys gift shops, what can I say?

We drove home each evening tired out, and often we were so full from breakfast, we only had snacks in the afternoon/evening.  Cheese, crackers, olives, bread, wine…of course, there was the one day my mom stopped in the bakery on the Makah Indian Reservation.  Katie, my dad and I decided we wanted to stroll around the Reservation museum, and my mom checked out the bakery while we did so.  Little did we know, she was out there experiencing the native life while we merely read about it in the various exhibitions.  Here’s what happened:  my mom went to the bakery to get a snack for us, however the young woman behind the counter didn’t have anything prepared.  She suggested breadsticks and homemade marinara sauce, something she could prepare in minutes in her superhot oven.  My mom talked to her as she prepared the breadsticks, and was surprised when the woman mentioned how she was superhungry for elk spaghetti.  “You mean, you put elk in the sauce?”, Carol asked innocently.  “Yah…I have a hunting license, but I haven’t had the chance to get out there yet”, replied the 20-year old.  “But so-and-so caught a bear a couple days ago”.  She gestured to a client in the store, and suggested my mom go check out the claw he had with him.  Well, my mom obliged and mozied over to see this claw…unfortunately, it seems she misheard the girl.  The hunter removed an entire bear PAW from the bag in his hand…and I don’t mean the pastry kind of bear paw.  There it was, fur and all, dangling in front of my mom who was completely disgusted.  She expressed her distaste and the man laughed, insisting that the claws made wonderful jewelry, to which my mom replied “I bet it’s nice when it’s jewelry, but I don’t want to see a bear paw, thank you very much!!!”  Man, I wish I were there to see her expression, and to chronicle it for you in the photos below.  I’m sure you can imagine how surprised she was, expecting to see a little claw and instead finding herself gazing at a bloody, furry bear paw.  That story provided us with many laughs on the trip.  Before we left, Katie bought her a beautiful copper piece of art in the shape of a bear paw (at Pike Place)…the story lives on!!!  By the way, the breadsticks and marinara were delicious!!!!  I wonder if there was any elk in that marinara…..

When Saturday came, we said goodbye to Jeri and her wonderful bed and breakfast, and drove back to Sea-tac to pick up the gift of life.  It felt so good to see the Seattle skyline still there, waiting for us.  We exited at Mercer Street and as we pulled onto Fairview Avenue, I felt as though no time had passed since last seeing my Lake Union neighborhood in January.  It was as we left it, peaceful and energetic at the same time.  “There’s “Joey’s”!”  “Hey, look, a seaplane!”  “Ahhh…the Silver Cloud (hotel)…we missed you!”  “There’s the SCCA!”  “Look, sailboats…kayakers…houseboats!!!!”  It was good to be back.  After soaking it all in, I started worrying about the fact that we only had a week to spend there.  Don’t worry, I didn’t dwell on it ’cause that would be pretty silly, but I think it goes to show just how much I enjoy the city (as if you didn’t already know that).

You know one of the best things about this particular trip?  Well, for one, I was healthy.  But most importantly, I reconnected with two friends from high school whom I hadn’t seen in about fifteen years.  Elvira, who lives in Portland, took a train up Saturday night and stayed through Monday just to see me!  I’m so honored, Elvira!!  :)  She, Katie, Laura and I spent the day together Sunday, visiting my ol’ stomping grounds:  Minor Avenue, Carlo the dog at “Paddy Coyne’s”, “REI”, “Feathered Friends”, Pike Place and “La Spiga” for dinner.  She accompanied me to the clinic Monday morning, lending support while they took 23 tubes of blood.  Although the days passed quickly, it was so wonderful to spend time with her, and to learn about how she’s spent the last fifteen years.  If you’ve ever met up with an old friend, then you know what I mean.

On Monday, my friend Holly met us at the Silver Cloud and accompanied us to REI where Laura and Katie were scheduled to climb the wall.  I had to postpone my climb because I had my bone marrow aspirate and a skin biopsy (regular procedure to check for GVHD) done earlier in the day, and they discourage rigorous activity following bone marrows.  We cheered them on from below, and Laura made it to the tip top of the wall (if you remember last year, she got to about 35 feet before looking down and deciding she was quite high enough).  It was Katie’s first climb ever, and she did wonderfully!!  She chose a different course than Laura, one that didn’t go to the tip top, but it was well over halfway there (I decided on this course too when I climbed a couple days later).  Afterwards, it was off to another delicious dinner!!!  By the way, I have absolutely no desire to weigh myself to see how much I gained on this trip, but I’m pretty positive it was over five pounds because we ate well!!!  By the end of the trip, those jeans that were slightly tighter to begin with fought me just a little harder when I tried to make the button reach the button hole.  Hey, that’s part of the joy of vacationing!  After all, when else do you get to eat food like that?  No more four course breakfasts for me…it’s back to blueberries and cereal!  :)

Sorry…it seems I got a bit sidetracked.  As I was saying, I got to hang out with Holly, who is also a cancer survivor.  She ran a marathon earlier this year with Team in Training and I was very happy to be an honored teammate for her.  It’s just so interesting to get to know someone again, and for that I thank facebook (and Lori and Katie for getting me to join!) for helping me get in touch with both Elvira and Holly.  I guess it seems especially meaningful following a health crisis.  I feel this amazing support from friends whom I hadn’t seen in a long while, and in that way it seemed as though no time had passed since we last met.  Thank you both for taking the time to spend with me.

I received a very special present while out there.  No, not my good results, although that is a true gift, but rather a book.  We were waiting for our dinner at “Szmania’s”, and Katie pulled out what she said was a book they found for me at this famous Seattle bookstore (Elliott Bay Book Company, http://www.elliottbaybook.com/about/index.jsp).  I unwrapped it, expecting to find a book on Seattle, but it was actually authored by yours truly!!  On the top of the cover was the Seattle skyline as drawn in “Frasier”.  At the bottom, Katie had used a photo of myself looking out the window at SCCA, and crafted it so it read “Julie”.  The back of the book was black with a simple quote:  “Fighting cancer with family, friends, humor, good medicine and a hula hoop”…sound familiar?  It was “Julie’s Blog:  The Seattle Months” (first page).  I flipped through the pages to see my blog, every single entry I wrote while in Seattle, every single photo, every experience.  I was extremely emotional, especially after noticing her intro page:  “Hey baby, I hear the blues a-callin’, tossed salad and scambled eggs…” (you “Frasier” lovers should recognize that!!  It’s from the show’s theme song, and that show was such a wonderful escape for all of us during our stay in Seattle.  If you recall, we watched every single episode!!).

Katie, I can only imagine the hard work you put into arranging it for me.  Just so the rest of you know, you can’t simply press “print” somewhere and have the blog come out in book form!  No, no, no…Katie had to retrieve every photo, and copy and paste everything.  To make things worse, my mom’s computer crashed earlier this year, erasing every image I had on it.  Katie had to go into each post, pull up each individual photo and drag it into another folder before putting them into a post.  I was laughing when she explained how each month I had about 300 photos, and then I started steroids…in December, when I was “cracked out on steroids” (as Katie puts it :) ), I uploaded 800 photos!!!!!  hahahaha  I had no idea!  Katie, I’ve spent several hours looking through it (I mean, it’s some good reading!), and I am so touched that you thought to do this for me.  I will always cherish it.  It’s the best gift I’ve ever received…oh yah, other than Laura’s cells.  :)

The tears started coming down even more when I noticed the ending quote:  “They’re callin’ again.  Good night, Seattle, we love you.” (the end of the “Frasier” song and a fitting closure to my time out there).  Following that quote, Katie included comments from many of you, notes about your favorite post or how my blog affected you.  I was proud to read all those compliments, and to know that my blog actually uplifted many of you.  I felt humbled when you thanked me for sharing my feelings.  The thanks goes to you for reading and supporting (especially during my steroids stage when I was quite the chatterbox and picture-taker!!!)!  Susan, all the guest bloggers were very happy to get a shout-out from you!  They were all like, “That’s right!  You can’t forget about our wonderful posts!”.  Andrew, I love your signature:  “Andrew Colletti, Transplant Class of 2002″…we were cracking up!!!

And to Laura (who had two full pages with photos of her at her sickest…throwing up and smiling a weak smile, both taken of her in a wheelchair), it was appropriate that you were separated from the rest by a page reading “Last, but certainly not least…”.  You truly did give me the best present I could ever receive, and I found your words quite touching:  “Julie, you’re only here today because of me…your ‘gift of life’.  Love you, Laura”.  hahahahahaha  I couldn’t have expressed it better myself!  You really do look pitiful in those pics…I’m looking at them as I type.  Next time I don’t feel like loaning you a sweater, I’m sure you’ll refer me to this book, to remind me what you went through to save me.  Seriously though, you are right.  I would most likely not be here if it weren’t for you, and I think about the transplant every day, in a good way.  From here on out, you’re partially responsible for everything I do, good and bad!  I can never repay you in sweaters.  :)  I guess you’ll just have to know in your heart that I will always be grateful, because there are no words.  Love you.

I love you even though you doubted me when we decided to tour Efeste winery in Woodinville, WA.  You all doubted me when we pulled up to an industrial park!  I admit, I was pretty worried when we drove into the parking lot, thinking perhaps it was the navigation system that gave us improper directions.  I had called ahead, not knowing the winery was actually closed, and spoken with Brennon (turns out he is the winemaker! Check him out:  http://efeste.com/about.asp (click on “Brennon”)).  He told us to come on by, and we could taste the wine and check out the winery.  Later, he told Laura that he had been working on bills, and when I called, he thought to himself “Hmm…I could do bills, or I could drink wine and talk to people…I think I’ll choose the latter!”.  We quickly learned why we couldn’t tour the vineyard…it was hundreds of miles away in the eastern part of Washington.

Brennon poured us tastings of several different Efeste wines, and we all chatted, learning about the wine, Brennon’s viticulture studies, the meaning behind the name (there are three owners, and one’s last name begins with “F” (hence “Ef”), another with “S” (thus “Es”), and the final with “T” (I think you can figure that one out).  So, it’s pronounced F-S-T.)  There, now you’re practically a wine connoisseur!  :)  We shared with him our reason for visiting Seattle and the Northwest, and we learned that one of the owners’ grandsons had acute leukemia.  He was still undergoing treatment, but was doing well.  Brennon created a wine in his honor!  It will come out in 2011 (if I remember correctly), and is called “Tough Guy”.  I love it!!  Brennon led us through the winemaking areas, and mentioned they were harvesting some grapes that weekend, and would we like to help sort?  Well, we’d never done that before, and our brains were slightly tinted with “Final Final”, “Jolie Bouche”, “Ceidleigh” (named after a waitress the owners once met in Australia) and “Big Papa” (so named for the big papa (or head of the family)).  So, yes, our brains were tinted and we were so seduced by the thought of helping in the wine harvesting (or “crushing” in the wine biz), we quickly said we would help!  Katie later changed her mind, deciding that standing for 6 or 7 hours sorting grapes was not her idea of fun on a vacation.  :)

So she missed out on Friday, when Laura, Dad, Mom and I woke up early to drive out to Woodinville.  Mom took the job of photographer and Dad, Laura and I set out to sort some grapes.  Laura convinced us to purchase matching bandanas so we would look like Laverne and Shirley at the assembly line.  Dad wouldn’t wear his, but you can see Laura and I donning ours in the photos below!  Although all of us had sore backs by the end of the day, it was a fascinating process.  The grapes were poured into this machine, and there were eight or so volunteers like ourselves waiting on the other side to grab any raisins that tried to get through.  I felt a bit like Ethel and Lucy in the chocolate factory episode, because those grapes came pretty quickly, and there was no way we could catch all the raisins!  After us, the grapes went into a de-stemming machine where there were other volunteers catching any stubborn stems.  Following that, I’m not quite sure what happened, ’cause I was staring down at my grapes!  One gentleman working with us told Laura that some people actually pay to be part of crush so they can see what it’s like!  He also said that most wineries he’s volunteered at do not sort grapes by hand, but rather machine.  And he should know because he and his wife volunteer so much, they get 12 free cases of wine a year (we each got two free bottles for our skilled sorting efforts)!  I would definitely do it again, but I think rather than trying to be tough and working through, I would be wise to take some breaks so my ol’ back doesn’t complain.

I would have to say the high point of our week in Seattle came Thursday evening, when we went out to dinner with Jackie, my nurse.  I made sure my eyebrows were plucked, my makeup and hair perfect, and I even brought out my new jacket (the one from Falmouth) for the first time.   I was so proud of how healthy I looked, and I couldn’t wait to show her.  I mean, last time she saw me I had a puffy face, swollen eyes and a unibrow!

She gave me the highest compliment possible when she told me I looked as though I never had a transplant!!  At one point, she said I looked like the most ravishing transplant patient!  Yup, that’s the look I was going for!!  If they have a catalog of transplant patients, I’d love to model!  :)  Jackie was so important throughout the transplant process.  My mom and I found her mere presence reassuring.  She’s entering her 23rd year at the Hutch, and I can only imagine how many lives she’s touched in that time.  Jackie, thank you for being so kind, thoughtful, funny, inspiring (after hearing about your experience volunteering at the Iditarod, I’m adding it to my list of things to do, places to see!), understanding and dedicated.  You have a special place in the hearts of the Matthews clan.

I haven’t actually said much about my SCCA appointments, have I?  Well, it seems that I am back to the old Julie!!  My bone marrow aspirate and skin biopsies were both clear, the doctor took me off of Acyclovir (which pretty much leaves me with vitamins, allergy meds and Lexapro), I am cleared to work, go to a UVA football game, and really do almost anything I desire!  I was surprised when Dr. Flowers advised against walking a marathon.  She explained that many transplant patients encounter GVHD problems after marathons as a result of being so exposed to the sun.  I assured her that I wear sunscreen every day, and I almost always use hats, but she was still hesitant.  Ronnie suggested that maybe she doesn’t realize that I’m such a careful patient, and that I really do apply sunscreen.  I’ll discuss this with Dr. Orloff to get his opinion as well, but if full marathons are out, I still have half marathons (Dr. Flowers OK’d these)!  There will never be any more sunning-myself-on-the-beach days, but that’s OK…I don’t mind sitting under umbrellas.  :)   Although I got rid of the last truly transplant-related drug, they did find that I’m slightly hypothyroid, so I will take Sinthroid every day for life…no biggie though, ’cause I’m not symptomatic of hypothyroidism, and the pills do not have any side effects.

I went through a battery of tests:  bone scan, skin biopsy, bone marrow aspirate, pulmonary function tests, blood draws, an eye exam, gynecological exam, dental exam,  and a nasal wash.  I did not receive any vaccines because they discovered I had the rhinovirus (common cold).  I will, however, receive vaccines for the following in a few weeks:  H1N1, flu, Hepatitis B, pneumococcal disease, polio, tetanus and diptheria, and Hib disease.  They found that the Fosamax has lessened my osteopenia, and I will stay on that for another year, at which point they’ll do another bone scan and re-evaluate.  They will also more closely monitor my thyroid now that I’m taking medication.  Because of the medication, they will also check my liver function more often.  My cholesterol is 182, triglycerides 148, HDL 58, LDL 94…how’s that, Dad?  Do I get an A?  :)

So really, things just couldn’t be any better!!  Our last day in Seattle, I celebrated by climbing the REI wall.  Next time, I’ll go for the higher climb, but I felt pretty darn good doing what I did, especially after almost seven hours of sorting grapes!  Afterwards, we met Vera, her husband Dan, and their beautiful little girl, Stella, for dinner down near Pike Place Market.  How wonderful it was to be able to hold Stella this time!  Vera was a great comfort for my mom and me during the transplant, and we were delighted to be able to meet up.  Vera, I hope sometime you guys come out here to the east coast so we can show you around Virginia!  SCCA is really lucky to have you as a volunteer.  Your upbeat, fun and thoughtful personality always brightened my days, and I know you must do the same with any family you meet.  That also makes you the ideal nurse, so your patients are pretty darn lucky too.  :)

Well, folks, I guess we’re arriving at the end of this post (the written portion anyway!).  Remember those 23 tubes?  Well, as you read previously, the SCCA lab drew 23 tubes of blood to do various tests and studies.  When I said it out loud, it sounded like the perfect title:  “23 Tubes”.  It sounded symbolic of something…but what?  Just for kicks, I typed in “23 tubes” into google, and I happened upon a blog where someone poured 23 tubes of toothpaste into one bowl and proceeded to brush his teeth…hmmm…that doesn’t really have any special meaning…it’s just weird and funny.  I think in my case it makes more sense to list 23 things I’m thankful for, so here goes:

I’m thankful for…

1)my family (this, of course, includes Jameson, Guinness and Bella!)

2)my friends

3)my doctors/PAs/nurses/assistants/counselors

4)good movies

5)music

6)delicious food

7)beautiful fall days

8)yummy coffee

9)enlightening books

10)comedians

11)baseball (especially the Yankees)

12)Efeste wine :)

13)sunshine

14)rain

15)Honey Crisp apples

16)a good-quality camera ;)

17)my favorite perfumes

18)flowers

19)my new black jacket

20)sunscreen

21)23 tubes of healthy blood!!

22)my past

23)my future

Go ahead…make a list!  It’s quite fun.  And remember:  “There is a calmness to a life lived in gratitude, a quiet joy.” - Ralph H. Blum

Again, I want to thank all of you for reading.  Your comments always make me smile.  Being healthy is only enjoyable when you have others to celebrate with, and I look forward to celebrations for many years to come.  I hope the length of this post didn’t overwhelm you, but I had quite a lot to cover!

I thought it fitting to end with links to my top fighting-leukemia-and-kicking-butt songs…they make for a good background while looking at the photos…Enjoy!

Love you lots,

Julie

http://www.youtube.com/watch?v=aJmr5CKY73M&feature=related…I like to think I’m as tough as Rocky.  Stay tuned for a blog photo of me on the stairs of the Philadelphia Museum of Art, hoodie and all.  :)   Anyone wanna take a road trip to Philly?  :)

http://www.youtube.com/watch?v=uY3LAFJbKyY&feature=related…This will forever be Mariano Rivera’s song, but as you know I used him for my visualization, and of course I imagined him pitching to the tune of Metallica.

http://www.youtube.com/watch?v=0nBFWzpWXuM&feature=related…I adopted this as my theme song.  It’s all about the beauty of life, and the importance of celebrating it, even the pain and worry.  Sing it, Celia!!!

http://www.youtube.com/watch?v=PmLzr1YSI9Y&feature=related…Remember when my mom wrote new words to this?  How did it go…something like “Inch by inch, row by row, gonna make these stem cells grow…” :)

http://www.youtube.com/watch?v=mcdbGxYX9es…This one is slower, but I liken “The Long Day is Over” to a healthy me sitting by the fire after all the treatment is over.  :)

http://www.youtube.com/watch?v=6ab1l2TwFp8…Because there’s something victorious and joyful about steel drums.  Picture me dancing around with my healthy Laura cells.

And here’s one more song…it has nothing to do with my kicking leukemia’s butt, but I recently discovered it, and I love it!!  Well, technically, that’s not true.  I’m very familiar with a Spanish version sung by Enrique Iglesias, but this is by Joshua Radin…enjoy!  http://www.youtube.com/watch?v=vjd6yIn2zmk

Finally, check out the video below…it’s not at all related to the rest of my post, but it’s funny and heartwarming, and I wanted to pass it on:  http://www.youtube.com/watch?v=QByHat2BJLs.

Written by JKM on September 20th, 2009

Two days to go!!  Well, actually, one and a half days.  We leave Monday around 6 AM to head out to Seattle.  Aside from having to drop my babies off at the kennel tomorrow morning, I’m quite excited.  I did a little photo shoot with them tonight so I can have a good picture to take out to SCCA.  It will grace one of the many transplant survivor boards.  When I was at the clinic, I stopped and looked at each board while walking to and from my appointments.  Each face gave me hope, and I couldn’t wait until they asked me for my own mug.  I spent about an hour looking through photos to find the perfect shot, until I decided to get dressed up, fix my hair and makeup and create some new shots.  And I didn’t even go anywhere tonight!!  I wonder if other patients spend this much time picking that perfect picture-of-health photo to share.  :)

All is well here, aside from a weird jaw issue.  Lately, I’ve been waking up with a swollen left cheek (and sometimes right too).  When I touch my upper jaw, it feels like a bruise.  Ibuprofen and ice bring the swelling down, but it’s obviously not a permanent fix.  Strange, huh?  I visited my primary care this week, and he’s not sure what it is.  He sent me to get an X-ray to make sure I didn’t have osteonecrosis, a rare side effect from Fosamax, one of my pills…I looked up “osteonecrosis” on Wikipedia and found the phrase “dead bone from poor blood flow”.  Thank goodness the X-ray came out clear!!  My next step is to visit a dentist (which I’ll do in Seattle)…it could be that my mouth guard needs to be manipulated.  Yup, I’m a tooth grinder!…unfortunately.  I’m thinking good thoughts for my jaw.  =)

Is it just me or do medical waiting rooms make you sleepy?  I thought I might knock out while waiting for the X-ray.  I blame it on the whisperers sitting next to me.  Seriously, anytime people start whispering, I just want to grab a pillow and fall asleep…is that normal?  :)

Speaking of sleep, this is a short post ’cause I’m tired, and I have to get up early to drive the pups to the kennel.  If I’m not too busy partying, I’ll try and post from Seattle.  I hope everyone is doing well.

Lots of love,
Julie