Julie’s Blog

First of all, GO STEELERS!!!!  I have to say that ’cause my mom is from a small town near Pittsburgh, as is much of my family.  To all my extended family in Charleroi/Pittsburgh/Belle Vernon, check out the pics below to see the Steelers gear you sent me.  I wore the hat today for good luck, and I have the cozy blanket (although it’s actually pretty warm today–crazy, springlike weather!).  Thank you so much for those and for the cozy pjs (which I’ve worn a lot)!  So here’s looking forward to a Pittsburgh win!!  Although, the orangutan at the Oregon Zoo picked the Cardinals t-shirt and he’s been choosing the winners accurately for the last four years!  Check it out:  http://www.katu.com/news/local/38731057.html. How cute is that?!  They’re always one of my favorite animals to watch at the zoo because they’re hilarious!  They love to entertain…wish I could jump the fence and hang out with them for a while. 

OK, now it’s 11:30 and Pittsburgh won!!  WOOHOO!!  That was a great game.  My mom, dad, aunt and uncle were upset when James Harrison (Pittsburgh, #92) started beating on one of the Cardinals players (I don’t remember who it was).  I didn’t know him at all, mind you, but I decided to defend him just ’cause you never know, so I said “Maybe the other guy said something completely inappropriate and Harrison just couldn’t help himself from getting his anger out!”.  No one believed me and they kept talking about how they hated him throughout the game.  I kept defending him just ’cause I felt like it, saying “He just made a bad decision…blah, blah, blah”.  My mom, a true Pittsburgher at heart said, “What you do is, you wait ’til the game is over and then you beat the crap out of the guy!”  Hmmm, now, that makes sense!  Anywayyyy, the whole point of this is that I just looked him up, and apparently he doesn’t have the best of records.  He beat up his girlfriend, he shot off a BB gun in the locker room during his last year of high school, and bodyslammed an inebriated fan (this was a good thing though–apparently the guy needed to be restrained and Harrison was there to take on the job!)  So, perhaps I was wrong.  Although it did say he wants to become a veterinarian after his football career ends, so he must have a sensitive side if he loves animals, right?  Or maybe I’m a bit gullible.  In any case, it made me laugh to read the article after I defended him so strongly. 

One more thing about the game…they already have this in Wikipedia:  “During Super Bowl XLIII, Harrison was involved in a dramatic record setting play. Harrison intercepted a pass from Cardinals quarterback Kurt Warner at the goal line and ran back the length of the field for a 100-yard touchdown at the end of the first half. The play was reviewed because he was tackled at the goal line. The review determined Harrison fell onto Cardinals‘ wide-reciever Larry Fitzgerald’s leg and then proceeded to fall into the end-zone, thus scoring a touchdown and giving the Steelers a 17-7 lead going into halftime. It’s the longest play in Super Bowl history and helped the Steelers win Super Bowl XLIII 27-23.”  Wow…Wikipedia is super speedy with their info!!

Hold on…I gotta take my meds…be right back…

OK, I’m back (lucky you!).  My appointment went well on Friday.  My counts were about the same as Monday, and my magnesium levels looked good, so I’m down to 10 mg pills a day instead of 12!  It always feels good to get rid of some pills.  :)  He told me I only have to come in for visits (and my blood counts) once a week which is nice.  I’m going to make an appointment with my ENT (my ear tube is still in!!!–remember, he put it in last summer before I left for Seattle?!), and a dermatologist, so he/she can give me a full check-up (I believe so they can do a more thorough check for skin GVHD).  So all is well…I have a bit of a headache right now, and I get those every so often, but I don’t think it’s anything to worry about.  Besides, I mention everything to my doctors.  Anytime I have some symptom or ache, I write it down to mention to my doctor at my next appointment.  As I’ve written previously, just the act of writing it down seems to help me feel better.

You know what ALSO makes me feel better…dancing!!  (as if you didn’t know that already )…so while I was trying to clean up my room yesterday (it was becoming difficult to navigate it what with all the boxes and clothing strewn all over the place), I danced and sang to the craziest mix of music you’ve ever heard (e.g.Shakira, Alan Jackson, Andrea Bocelli (admittedly very hard to dance to, but a good sing-a-long), Fonseca, Maná, Aerosmith, Elvis, John Denver, Julieta Venegas, Dolly Parton, and Ben E. King, to name but a few). It felt really good, and I actually accomplished a good amount, although my entire body was aching by the end of the day (just like last weekend when I unpacked some stuff with Lori)…I think perhaps I need to learn to take more breaks instead of forcing my body to do more than it feels like doing right now.

Katie came into town yesterday afternoon, and we had a relaxing afternoon/evening (which was nice—my body was thanking me for sitting down and resting).  She, my mom and my dad were all reading their books, so I picked up a puzzle I’ve been trying to figure out for days now.  Do they always have “Second Glance” in the “Washington Post Magazine”?  It’s right at the beginning of the magazine, and they show you two pictures, with the instructions that although they look exactly alike, there are 12 differences between the photos.  Well, let me tell you, I looked at that thing for thirty minutes before I was convinced that somehow they printed up two of the same photos, and there were no differences!  I was getting pissed, but I finally discovered there were indeed differences, so I was pretty darn proud of myself.  I love puzzles like that! (PS I didn’t get anywhere near finishing the puzzle.)

Everyone went to bed before I did because I’m still having trouble going to sleep at a decent hour. I hate the feeling of waking up late, and this is something I need to work on right now. Anyway, I was getting ready for bed and organizing things a bit and I started crying. Sometimes worries, disappointments and fears seem to jump very suddenly into my brain and the tears will start. Usually it feels good to get them out, so I just sat there petting Jameson and crying. It did feel good, but I knew I didn’t want to go to bed in such a down mood, so I grabbed my “Self” magazine, hoping for a little distraction. Before I knew it, I was creating a new healthy grocery list to give my mom, and I was making lists of possible physical activities I can handle right now (like yoga–by DVD–can’t go to any class yet given my immune system), walking, hiking, dancing, zumba which looks awesome (I figure they have a DVD for that too). I read stories about some of the other readers, I checked out some good recipes, and the crying quickly subsided. I got excited about what I’m able to do, and it made me feel proud to have the power to distract myself and pour my negative energy into something more helpful.

The way I’ve been able to deal with the leukemia in general makes me proud because I realized the power that the mind can have over the body. For me, the more the distraction (family, friends, movies, animals, laughter, music), the better I feel, and I discovered this on my own. Nobody had to point out “why don’t you try this” or “why don’t you try that” to lift my spirits (although sometimes they had to remind me). I guess what I’m trying to say is that I know myself really well now, and I am proud that I can redirect my feelings when they become overwhelming. It seems to me that it will be a wonderful skill to have throughout life, not just now through this health crisis, but at various times in the long, beautiful life that awaits me. Do you find it at all ironic that cancer helped me learn how to live an even happier life? Perhaps the following quote best describes how perspective can change our feelings about life:

“There are as many nights as days, and the one is just as long as the other in the year’s course. Even a happy life cannot be without a measure of darkness, and the word ‘happy’ would lose its meaning if it were not balanced by sadness.” - Carl Jung

It’s perfectly written, I think. Not quite as touching as the old favorite, “What doesn’t kill you builds character”, but it’s still nice.

Wow, I’m being deep tonight. I’m also getting tired, so I’m off to brush my teeth and perhaps read a little more “Self” before bed.

I hope everyone enjoyed the weekend!! I think I should end this blog just as I started it:
GO STEELERS!!!!!!!

Love,
Julie

Happy Thursday, everyone!  Aunt Nancy picked me up today, and we went to see “Bride Wars” and then we went to lunch.  It was a beautiful, cold, sunny day, and it was so nice to be out there.  Thank you, Aunt Nancy!  Now I’m sitting by the fire (do you sense a theme with that? ) and watching “Private Practice”.

I go to the doctor tomorrow again, so I’ll let you know how everything goes.  I’m visualizing good numbers tomorrow, those little guys with top hats and cute little dancing sticks (you know, what the tap dancers use).  By the way, they’re totally separate from the marksmen cells.  These cells are happy little guys who I visualize just going down a slide into my blood…more red cells, more white cells, more platelets.  Maybe I should picture them with Laura’s face on them….hahahahahaha  They are, after all, her cells!!!  That would be creepy, no offense Laura.

Now it’s 11:30 and I’m a little sleepy.  I’m still in a weird sleeping slump…going to bed too late and waking up too late, but this is a hard habit to break!  Do you think I can still blame it on the time change? 

So I don’t have anything inspiring to say today, but I was looking through some older pics (older as in last year) that I thought I’d share with you.  Enjoy and have a good Friday!

************Snow!!!!!!!!!!!!!!************  Woohoo!!  I wished for it and here it is.  Weird, huh?  I wished for some of my delicious soup and-wallah!!-it appeared!  I wished for snow, and what do ya know?–here it is!  I was reading an article in “Good Housekeeping” last night about affirmations, and how they can get you what you want.  I think tonight I’ll think over and over: “I will win lots of money, I will win lots of money”, and we’ll see what happens tomorrow!!  While I’m at it, I might as well add, “My chubby cheeks will deflate” and “I’ll find a wonderful job when it’s time”, and “I’ll meet a hot, dog-loving, hiking, snow-loving, funny guy”…do you think that’s too much to ask in one night?  I mean, I’ve got a good track record now with the soup and the snow…I figure I might as well take these wishes as far as I can!!!!

Regarding the title of this blog, I am still of the firm belief that removing a bandaid hurts exponentially more than having a bone marrow aspirate or biopsy.  Why am I thinking this now, you wonder.  Well, because I no longer have my Hickman catheter, so when they check my blood, they have to stick me with a needle each time.  Needle, nooooo problem.  Bandaid post needle prick, I have issues with it.  Or actually, bandaid any tme (following the bone marrow or a cut or whatever it may be), big problems.  Anyhoo, so they stuck me last week and yesterday to check all my blood levels.  I waited until I was in the shower to remove it, letting the water run over it to help remove the stickiness.  Then I started my yoga breathing to help myself deal with the shock of ripping it off my skin (no I’m not kidding about all this!!  I seriously do it!!!).  Then I try to take it off.  The first step in peeling it off is often the most painful, and I can’t help but yell “Ow!!!” and maybe a few expletives.  I tell myself: “You can do bone marrows, skin biopsies, spinal taps..anything without feeling much pain…you can handle a bandaid, you wuss!”  Nonetheless, I close my eyes as I try to peel off the rest.  Is it best to just rip it off all at once so you have redness and radiating pain for only thirty seconds or so?  Or is it better to go slow, and prolong the pain, but perhaps reduce the amount of it?  I don’t know.  Either way, I’m always proud of myself once it’s off.  Does anyone have the same trouble with bandaids (and the medical tape too–just as bad!)?

Remember when I wrote about the show I was watching the other night…”Say Yes to the Dress”?  It was pretty good!  I admit it made me teary a couple times because they were trying to give deserving women their dream wedding dress, and each couple had a difficult story.  The one that got to me the most was the couple who were both in the army, and they had to deploy to Iraq right after the wedding…very touching.  After that show, I COMPLETELY changed gears and tuned into “Extreme Marksmen” on the History channel.  It was fascinating, following army snipers as well as Old West Shooting Exhibitions.  It was truly amazing, but I was cracking up thinking of the contrast between my tv choices..choosing the supergirly dress show, and moving from that to a show about gun-wielding experts.  I certainly didn’t think I’d find myself searching for a link to share with you guys from http://gunsandammomag.com/!  I’ve only used a gun twice before, and I loved it (don’t worry…no one got harmed in the process.  In fact, I was pretty OK at it…just ask Ronnie)!  By the way, I never did find the link I wanted for you guys.  I wanted to share with you one of the shots that Bill Oglesby pulled off, but I couldn’t find it.

Another wonderful show I saw this weekend (yah, so maybe I did sit on the couch a lot….got a problem with that?!) was “Iditarod, the Toughest Race on Earth”.  Remember when I told you way back when that Jackie, my nurse in Seattle, volunteered at it last year, the year the Discovery Channel was there to film the race? It was an amazing film with beautiful shots of Alaska and what the mushers and dogs go through along the 1,112 mile trail…yup, 1,112 miles!!!  I highly recommend that you watch these DVD’s.  Whether you’re a dog lover or not, the story of each of the mushers and the dogs, and the spectacular shots of Alaska will captivate you.  Jackie, I can’t wait to go up there and volunteer!!!  What an experience!!  The Iditarod 2009 will start March 7th.  Check out the race’s website:  http://www.iditarod.com.  Who wants to go to Alaska with me in a couple years?

Let’s see…what else is going on.  I went to see a bone marrow transplant nurse practitioner yesterday (at my practice), and my white count has gone down a little bit.  Platelets and red blood cell count are about the same.  My magnesium count is actually good so all those pills are making a difference!  She wasn’t too worried about the decrease in white count, thinking that they just fluctuate sometimes.  I see the doctor (the head of the bone marrow transplant program here) on Friday, so we’ll see what my counts are then and how he feels about everything.

When I found out they were lower, I reminded myself that I need to start doing my visualizations again.  I think now I’ll visualize little circle guys (like the cute ones on the M&M commercial, without the big M on the front):  yellow for platelets, white for white cells and red for red cells.  There is something they call “graft versus leukemia effect” where the new cells go after any old leukemic cells trying to spread around my body (hopefully I don’t have any!!!).  So I’ve decided to picture the little circle guys as an army against any bad stuff…infection, leukemia, bacteria, etc….I’ll try to picture them all as expert marksmen just like the people in the show I watched the other night.  Some will carry the sniper rifles to pick ‘em off from a distance, and others will use the pistol and other guns Bill Oglesby used to show off his crazy skill.  :)  I will also visualize myself feeling normal, looking normal and going out on the town…looking forward to that!

Better start with those affirmations, huh?  Now that I know I have this crazy power to make things happen (e.g. the soup and the snow), I will start working on my other wishes!

Hope everyone had a wonderful day playing in the snow (if you had snow)!!!  Enjoy the photos below of our jaunt in the snow this afternoon.  Jameson and Guinness are exhausted!

Take care.

Love,

Julie

Seriously, where IS the snow?  It’s cold out there, and I think there should be snow.  I guess that’s not enough though to have it appear…because I wished it.  Oh well, I’ll still keep it up!!  Before I forget (and totally off-topic from the weather), I was trying to copy it and paste the link on the blog, but it won’t work.  On CNN.com the other day, they titled an article “Obamas Juggle Inaugural Balls”…hahahahaha  I couldn’t stop laughing.  Too bad they caught it and took it off!  Sometimes we need the news to give us a good laugh and lighten things up a bit, don’t you agree?!

My parents made me my favorite soup for tonight (Ashley, you’r Aunt Lee’s soup).  It is the best soup ever, perfect with a baguette and some red wine (unfortunately, I cannot yet partake in the wine part of it…maybe in a couple more months!).  You know what’s funny?  Before I fell asleep last night, I thought of that soup, and how good it would taste in this cold weather, in front of the fire (yah, I guess I think about food a lot).  Is it bad to have food be your last thought before you go to sleep?  :)  No, it’s not the steroids talking.  I just love food!  Anyway, it was exciting to wake up this morning and find my parents making it!…also, they were making another one of my favorite dinners for tomorrow…a delicious salad with all the good stuff (which for me means radishes–I think you know how I feel about those—hard-boiled eggs, cucumbers, romaine, cherry tomatoes (they are the best kind!), celery, carrots, onions and sometimes cheddar cheese)….and don’t forget to shake some basil and garlic powder over top!….with some canola oil and Modena Balsamic Vinegar…mmmmmmmmmm…I’m excited for it already!

Hmmm…maybe I need to find things other than food to get excited about, huh?  I have to admit that I had to unbutton my top button on my jeans to sit comfortably on the couch tonight.  Don’t EVER pass that one on, got it?!!  We all do it, so don’t even pretend like you don’t!!  Of course, I only do it in the comforts of my own home.  I’m not eating as much as I did on steroids, so that’s good!  Plus, I hope to be out walking soon.  It’s time to retrain my body, and make it fully healthy again!  Chuck, are you reading this?  That’s where you come in!!–my faithful trainer and friend.  You have to go easy on me though. 

Anyway, it was a nice weekend with the fam.  Katie wasn’t able to come home, but she’s coming next weekend, and this weekend I got to see Ronnie, Kathy and Laura for a little bit.  Lori and I (mostly Lori) got lots done with unpacking…the boxes are now off the porch, which is great.  Now I just have to through all mine and organize them.  Today I visited with Gobind and his family (and their two beautiful dogs!).  Laura and I were going to go to Great Falls with Jamie and Guinnie, but I woke up late (surprise, surprise!!), and by the time we could go, it was around 4 and we knew it would be dark by the time we got there.  So we all ate some soup and watched “The Namesake”, a great movie and even better book if you’ve never seen/read it.  It’s always hard to get everyone to agree on a DVD, and this was the only one they didn’t strike down right away (what’s wrong with a couple episodes of “My Boys”…how can Laura dislike…how can anyone dislike that show? ) Which reminds me…if you haven’t seen the standup of Jim Gaffigan (”Beyond the Pale” is the only one I’ve seen), you should really watch it.  You’ll love it….”hoooot pockets”….that’s a code for those who have already watched it.  For the rest of you, you”ll just have to watch to find out.

Anyway, I love “The Namesake” so I had no problem watching it again!  Actually it’s the only movie I have ever seen by myself in a theater.  I had read the book, and I couldn’t find anyone else to go with me to see it, so I went, and I loved it!  I enjoyed my popcorn and m&ms mix, and I found it surprisingly easy to go to the movies by myself.  The one thing I missed was debriefing  with someone about the movie afterwards…sometimes that’s the best part about going to the movies!  By the way, I can’t wait to go to the movie theater again–I’ve missed it!  I can go during the off days, so hopefully I’ll be out, enjoying that popcorn and m&ms and ridiculously large coke soon!!  There are so many movies coming out that look good.

Geez…I’m in quite the talkative mood, aren’t I?  Anyway, again I’ve been lazy with my e-mails and facebook, but I’ll get myself in gear.

OK, I’ll sign off now.  I just found a show I’ve never seen before and it looks quite entertaining…”Say Yes-Dress” on TLC…anyone ever seen it?  I’ll let you know how it is.  Guinness and I are the only ones up now, so we’ll relax and enjoy the show together, although he’s totally passed out in his chair.  :)  Oh well.

Hope you enjoyed your weekend!

Julie

PS I forgot to tell you that I drove for the first time today since the end of August!–only in the neighborhood, but it felt pretty good to be out there, back in the VW!!  This is a BIG day…seriously!  I love driving.  The old Julie is slowly returning!

Happy weekend, everyone!

Although to me, every day is a weekend ’cause I’m not working (as we were talking about earlier, Rachel, the one benefit to not working).  Unfortunately, there’s this thing called money and you don’t get much of that when you’re not working so it’s really not an ideal situation, persay.

Anyway, not too much going on here.  I woke up a little earlier today, at 11:30 AM!!  Yesterday was the worst….4:30 PM…yup, you read it right…4:30 PM! How ridiculous is that?  I always feel guilty and ashamed when I do that.  I keep asking myself:  “Why, Julie?!!  How hard is it to get up and get something accomplished?”  I wonder if the answer is that I don’t have to be up for anything unless I have an appointment (well, and I do have morning and early afternoon meds to take—getting up late screws everything up!!).  Or could it be because no one is home, and I know I won’t be motivated to be efficient if I’m sitting in the house alone, not that far from my comfy bed.

Anyway, I’m disappointed in myself, so I have to turn this whole sleeping thing around.  I am not getting enough done around here!  I’m incredibly behind on e-mails and now facebook responses, and there should be no reason for that!!  How was it that I feel like I accomplished so much more in Seattle?  Again, I harken (I love that word ) back to the apartment, and the fact that it was such a nice, organized space for my mom and me…tiny and manageable, so I guess my tasks seemed more manageable.  Whatever my problemo is, I need to get out of this lazy bum routine and do stuff around the house, finish unpacking, stop lazing on the couch and drying my eyes out staring at the TV.  Could it be a form of depression?  I don’t know…I don’t feel depressed all the time, but I know doctors are constantly playing with the dosage of anti-depressants. My Lexapro dosage hasn’t changed since before I left for Seattle, but maybe it’s something I need to ask my doctor next week.  The whole point of them is to help you get through an obstacle or challenge in your life, right?–maybe my levels are off again so we need to change it…we’ll see.  I’m certainly not one to keep adding meds to try and feel better, but whatever tool I can use to help me feel more like myself, I will use if the doctors believe it necessary.

OK, enough blabbing on about that!!!  I’m sitting here on the couch with my pups, Guinny on my left and Jamie on my right.  Jameson’s snoring, and it’s so cute!  Yah, it’s much cuter when dogs snore…people, not so cute!!  I remember a train ride home from France with Ronnie (not to Virginia, obviously )…when I say home, I mean Spain where I was staying for a semester.  Anywayyyy, it was a sleeper car and it was all squished up, so Ronnie wasn’t too happy about that since he’s so tall, but even more bothersome was the snoring man in the bunk above me.  I lightly pushed his bed with my feet several times, and Ronnie told me to stop, but hey!–I couldn’t sleep–why should he?  I just thought subconsciously he would feel the bed moving and would stop snoring, but no…it was a futile attempt.  We arrived in Spain tired and pissed off, but don’t worry, the trip turned out OK!!  (except for when I got sick and puked all over the cobblestones of Sevilla!  Ronnie tried to shield me from onlookers, but it was a little hard.  I was a pretty good sister though—even though I felt sick, I still took him on a boat ride on the Guadalquivir AND on a horse and buggy ride…no wonder I got sick, huh?  I was a mess…then I cried ’cause I was sick and he was there visiting me and I didn’t want to be sick….honestly, I was a sad sight).

Anyway, I went a little off subject there, but I figure you’re used to that by now.  Let’s see…I’m back to trying to read a little bit each night because it always relaxes me before bed.  RIght now, I’m reading “Teacher Man” by Frank McCourt…it’s good, a little slow-going sometimes, but still very interesting.  It reminds me why I don’t think I could ever teach!  It’s a job that I highly respect, but it scares me.  If you’re not an amazing, fascinating and cool leader, the students will tear you apart!  McCourt sounds like he was kind of a “Mr. Hills” of New York.  Mr. Hills was my very best teacher, even above Julian Bond (he’s the head of the NAACP and an awesome teacher).  Mr. Hills taught history in high school, and he told it like a story.  Everything seemed so real and so, I don’t know, historical!! I think of him often and how many lives he touched in his years of teaching.  I will never, ever forget him, and I’m pretty sure that’s how all his students felt.  By the way, I did love all of my Spanish teachers, as well, but it’s hard to make Spanish class like a story…you have to follow all the rules, learn all the grammar, so by nature it just can’t always be fun!!  (although, Laurel, somehow you do it when you teach Spanish and Aunt Ellie, you do it with English!)  I’m very proud to have two wonderful teachers in my family.

I’m so cozy here between the pups that I’m tempted to just sit on this couch all night and write!!  hahahahaha  don’t worry…I won’t!

All is well here.  Ronnie and Kathy came up tonight, Katie’s coming tomorrow, and I’ll see Laura on Sunday…not bad, huh?  Yup, I have a pretty special family…always making the effort to come over to the house to spend some time.

Believe it or not, I’m now yawning….but it is 1:45 AM…I thought I was going to bed early tonight!  Oh well. I’ll try to find some good stuff that warrants pictures for you!  I know you miss those. 

Take care all and enjoy your weekend!!

Love,

Julie

Hey there everyone,

I just had to pass on that my appointment went really well today.  My numbers are higher than they’ve ever been before!!  My white count is 3.41…..3.41!!!!…neutrophils 2.3, hemoglobin 10.9, hematocrit 29.6 and platelets 159,000!!! Can you believe it?  Just to give you an idea of how good those are, last week my white count was 1.89, neutrophils .9, hemoglobin 9.4, hematocrit 28 and platelets 70,000.  Big difference, huh?  I’m very proud of this “report card”.  :)  It was also really good to see everyone at the office too.  I was happy they recognized me, because I was worried about my big cheeks, and I was wearing a hat, but they did!

We got some pizza for dinner…haven’t had that for a while, and it was yummy!!  Then, Rachel and I did a little unpacking of boxes…well, I did the paperwork and Rachel unpacked.  Actually because of my ridiculous chemo-brain, Rachel helped me with the paperwork.  It feels good to get a little bit done…little by little.  Thank you, Rachel!

Anyway, nothing else going on.  I’m getting irritated with Facebook…it just doesn’t seem like it’s organized to be easily navigable.  Give me my blog anyday!!!!  Oh well…a friend sent me a tutorial, so I’ll have to check that out.  After I get everything else organized, right?!!  I’m still feeling overwhelmed, but thanks to my family, friends, and especially Jameson and Guinness (they follow me everywhere), I’ll work through it.

OK, I hope you’re all doing well!!

Love,

Julie

What an amazing day!!!!  I woke up early to watch the Inauguration (11:15 AM—I missed their drive to the Capitol)….hahahaha, like 11:15 is early!  It was inspiring, exciting, and touching.  Katie got to the metro around 4 or so, and it took her about 2 hours (I think that’s right, isn’t it Katie?) to get into DC!  Crazy, isn’t it?  She got some good pictures, and now she can always say she was part of history!  Watching it on TV was nice, but to be there?  Katie can tell her children about this someday, and she will forever be part of history.  We are so lucky to be close to Washington, DC.

I have to say though that I was completely disgusted by those people in the crowd who boo’ed Bush.  I feel like our society is getting ruder and ruder, which is disappointing.  It’s nice that they can express themselves and not get shot, but at the Inauguration?!!  Seriously, what’s wrong with people?  Anytime  politics is involved, I know that people’s feelings and tempers get heated, but there’s a little thing called R-E-S-P-E-C-T (you should sing this when reading, by the way) :).

Phew…feels good to get that out!  Let’s move on!  Rachel, I have to say that I agree with Laura…you would be an absolutely amaaaaaaazing personal assistant.  Now, the question is (as Laura pointed out), how do we meet famous people?!  Anyone out there know of a famous person in need of an excellent personal assistant?  Seriously, how do people get into that field?  Do you have to know someone who knows someone?  I definitely don’t know anyone!  But if I run into one, I’m bringing up your name, if that’s all right with you, Rachel!!!

Let’s see…today was a pretty uneventful day.  I’ve lost some weight which is good since the steroids added some pounds.  I watched the Inauguration, slept for 3 hours (I’ve been feeling that heavy tiredness again, probably because there are no steroids on board anymore ), watched some of the parade and basically rested the rest of the day.  Mrs. Tiso brought dinner by, and it was delicious!  Thank you so much!  My mom was relieved to have dinner waiting for her when she got home (although technically it wasn’t totally made, but my dad and I did turn on the oven)!

I’ve got some good strong yawns coming on, so maybe I’ll fall asleep before 3 AM tonight!  That would be good, because I have an appointment with my doctor tomorrow.  Think good thoughts!  The only complaints I have are my sore ankles and left knee, my increased fatigue, and some minor stomach issues.  I’ll update you tomorrow with my counts and my reunion with my friends at the practice.

Here’s something funny, and I remember this happening last time too.  I keep thinking my catheter is in my chest, and I’ll reach to push it out of the way and it’s not there!!  I got so used to pushing it when it got in my way when I was sleeping or when it was just in my way….it’s like having a “ghost catheter”…isn’t that what they call it when someone loses a limb and then they feel like it’s there?

I guess I don’t have too much else to say today.  My dad reminded me that today marks four years since my first diagnosis.  That’s so hard to believe!!  I’ll always remember each diagnosis day because the first one was Inauguration Day and the second (and last!!!) one was my dad’s birthday.  My dad also pointed out that I’ve come a long way since the first time.  Despite the relapse, I now have Laura’s cells, and they are doing their job as I type.  Plus, if I didn’t have the relapse, I might never have known what an incredible city Seattle is.  I’ll just think of January 20th and June 3rd as days that call for celebration.

Wow…I really am yawning over here!!!  Midnight is a decent hour to go to bed, don’t you think?  OK, over and out.  Talk to you later!  I attached photos of flowers in Seattle, something to brighten your wintery day.

Enjoy!

Love,

Julie

Hi there!

Everyone excited about the Inauguration?  Katie and I watched “We Are One, the Obama Inaugural Celebration” concert on TV and it was wonderful!  Did anyone go?  Talk about filled with celebrities!  Katie and I especially liked Bettye Lavette.  I’d never heard her before, but she had a beautiful voice, and she and Jon Bon Jovi did a wonderful job.  Check it out if you missed it:  http://www.youtube.com/watch?v=7zDTHPY29HY .  On one hand, I’m jealous of everyone who is going downtown to enjoy these historic moments, but on the other hand, I imagine the crowds, the lack of bathrooms, and of course, the germs that come with a huge crowd, and I realize watching it at home will have to do!  But, Katie, I am jealous that you will actually be a part of it…I hope you have a wonderful time!

I was watching some of the coverage from the mall today, and they mentioned that they were planning a MLK memorial for DC!  This is my first time hearing anything like that, and to tell you the truth, I thought we already had a memorial for him!  I know, it’s embarrassing that I’m so close to DC, and I can’t remember all our memorials.  I definitely have to tour my own city more!  Anyway, it should be finished next year…check out the design:  http://www.washingtonpost.com/wp-dyn/content/article/2008/06/19/AR2008061902235.html. Apparently you can donate on-line if you want to help them raise the necessary amount of money.  I am surprised they don’t have a memorial for him already.

This has nothing to do with MLK or Obama, but that’s how my mind works. (chemo/bone marrow brain, remember?)…Coke tastes good to me again!  I used to treat myself to one a day, so now I can enjoy myself again!  I know, it’s probably not a good thing, but there’s just something about a nice cold Coke, not Pepsi mind you, but Coke.  I’m actually watching “Diners, Drive-ins and Dives” right now (on the Food Network), and I think my cholesterol and triglycerides are going up as I type, just by watching!!!  :)  Some of it looks good, some of this I can’t believe people actually eat!!

I’m still trying to work on understanding Facebook, but it seems like fun!  It seems like a lot of work, but I love looking at everyone’s pictures, and reading about what they’ve been doing, especially if Idon’t get to talk or see them very much. But again, I think I’m more of a blogger at heart. 

I’m sitting here now listening to “Precious Lord, Take My Hand” over and over again.  Remember way back when, I mentioned that the US Army Chorus, “Pershing’s Own”, came to my dad’s church and someone sang that hymn (my very favorite) a capella?  I could never find out who it was and how to get a copy of it, but again, resourceful Rachel (that’s a good nickname for you, Rach!!) surprised me with a CD that had him (Colin Eaton - http://colineaton.com/index.html ) singing it!!  It still makes me cry!  Music can often touch me so deeply, that I’ll get teary, especially if it’s a patriotic or religious song, but I was almost to the point of sobbing when he sang it…in a good way!  It’s hard to explain.)  It just moved me.  I know I had just finished treatment with leukemia the first go-round, and I thought more about death than I ever had before…not in a weird way, but I just told myself that it could happen sooner than I wanted, that it was not  in my control.  The song makes death sound peaceful, and when he sang it, you couldn’t help but be transfixed by the beauty of both the song and his voice.  Thanks, Rachel, for doing the research to find it, and for being so thoughtful.  I was really touched by it.  I admit though, I just listened to it about 15 times while I wrote, but I thought I should switch it up and listen to something that makes me laugh now so I can sleep well…so it’s on to some Irish music, a little Tommy Makem!  Now I’m swaying and I feel like getting up and doin’ some dancing.  Again, I can’t wait to go out to “Murphy’s” in Old Town for some cider and some singing!  Mostly though, I can’t wait to actually go to Ireland!!!!!!!  I pull that guidebook out when I think of it, and I have several things marked in there that I want to see and do.  It always cheers me up if I’m feeling a little down about being relatively isolated for many more months.

I just realized that I forgot to take my Cyclosporin this morning.  I’m not completely unpacked, and I am just generally disorganized.  You know, I think part of it is that in Seattle, my mom and I had our own space, and it was our little world while we were out there.  We were completely focused on my getting well and keeping up with all the paperwork, pills, etc.  Now, I’m adjusting to eastern time (I still go to bed around 2 AM, and lately I’ve been waking up at 2 in the afternoon!!!).  Being in the comforts of home makes it too easy to find something else to do.  Plus, I’ve basically stayed in the house since we got home Thursday, and I’m already feeling some cabin fever.  It’s time I get my butt moving and get out there and walk.  I’ve been lazy, and have eaten a lot of cereal for my meals (although Katie made a delicious fettuccine alfredo tonight, and my dad and mom cooked some yummy dinners too!)….so I guess it’s just for my breakfast and lunch…”Frosted Mini-Wheats”. 

Little by little, I’ll organize myself, and that will make me feel much happier.  Plus, a trek outside will help too.  Being outside always helps.  By the way, the deer come to visit every day, so I figure they’re just welcoming me home!  Plus, Bella has been coming up to me for back rubs, so I think she’s secretly happy we’re home.  I’ve always thought about writing a children’s book based on her.  I would call it “Loving Bella”, to try and teach children that even if you don’t always get a lot of love back from someone or something, it’s better to keep on giving and loving; you can indeed change their lives for the better, and they will enrich yours more than you realize (I wouldn’t just say that…it would be implied, of course).  Hasn’t everyone had someone they just wanted to give up on (and I’m not talking about exes :))—you know, someone in your class when you were younger or someone who just randomly crosses your path?  You know it would be easier to just walk away rather than give of yourself, knowing you wouldn’t get much in return from them.  Anywayyyyyyy, too much description!!  I would write something similar to that, but it would center around Bella and her difficult life as a stray, and how she changed when we provided her with food, water, and shelter…once she realized we wouldn’t hurt her.  She’s still not super-lovey-dovey, but that doesn’t change my love for her!

OK, I’m just blabbing on.  I have a couple more children’s book ideas, but I don’t think I’ll get into them right now!!  Aren’t you relieved?  I’m really just going on and on about nothing tonight, aren’t I?  Sorry folks, but writing helps me, which explains all my long posts on here. 

All right, well, I’m just sitting here with some hot cocoa, listening to Tommy and watching the Food Channel on mute (I am such a multitasker!).   The fire’s died down, but it’s still nice and warm in here.  I think I’m going to pop in a DVD of the “Golden Girls” and get some more laughs before heading to bed.  I can’t sleep in tomorrow—have to watch President-elect Obama at the Inauguration.  Even though I didn’t vote this year, I’m really excited about tomorrow and the years to come.  I know, I should have voted with an absentee ballot.  You know what?  I did go through the trouble of getting one (like it’s really hard ), and when it came, I was exhausted and I hadn’t made my decision, so my mom gave me the go-ahead to just throw the ballot away.  It was just too much at the time.  I didn’t do much research on either candidate, so I figured I wasn’t qualified to make an informed decision.

Anyhoo, I’m off to watch the “Golden Girls”!  Enjoy Inauguration Day!!!!!!  I’m ready to be inspired, aren’t you?

Enjoy the few photos I’ve added.

Lots of love from VA,

Julie

Happy Saturday, everyone!

Katie and I are sitting here watching “Terminator 2″, and she’s trying to explain to me what’s going on….T1000, T2000, etc….very complicated.  I actually saw this movie whenever it came out originally, but I have a horrible memory!  Especially now….I have chemo brain or bone marrow brain or whatever because I can walk two feet to go get something, and then I’ll stand there for a while trying to remember what it was I was going to get.  It shouldn’t last though, but it’s pretty darn bad, as you saw today Lori!!  Hey, did I tell you that story about Salem, MA?!  hahahahaha

Oh, you know what?  Another thing I forgot (surprise, surprise!!!)…I wanted to let everyone know that my friend Rachel is responsible for the cutting of that dangerous tree in Seattle!!  She read about it on the blog and took it upon herself to call the city of Seattle, and had them get their butts in gear and cut it down!!  GOOOOO RACHEL!!  Seattle thanks you, especially all those people who brave the streets of Minor Ave every day. 

It’s good to be back, surreal, but good.  I have a lot of organizing to do and lots of unpacking.  Lori, Ronnie, Kathy, Katie, Tiso, Paulina and Eric all came to visit today which was a lot of fun…you know how I love it when everyone’s together!  I wish I could have a party, but I think I’ll have to wait on that a couple months ’cause of the ol’ immune system…I’m hoping my white count and neutrophils come up this week.  My team in Seattle wasn’t too concerned about the drop since my most recent bone marrow aspirate was clear, but I would feel much better if they came up instead of dropped.  I’m just ‘gonna go ahead and blame it on Laura and her schizophrenic cells.  :)  hahahaha  Only teasing…you are my gift of life (yes, Laura constantly reminds me of this!).

Pressured by Katie and Lori (they actually put me in a headlock—not a very nice thing to do to a cancer patient!!!), I joined Facebook today.  I’m pretty overwhelmed by it, but little by little, I’ll figure it out.  It’s always cool to see what people are doing, people you haven’t talked to in a while.  Still, I love my blog….even if no one’s reading anymore, it makes me feel good.  Oh, by the way, they didn’t actually put me in a headlock.  hahaha They did my profile for me, put my picture up and everything!  I just sat there.  Thanks, Katie and Lori!  Also, Lori, thanks for basically making our dinner (it was delicious, by the way!!).  =)

Lori forwarded me a funny video–you have to check this out:  http://www.youtube.com/watch?v=ngRq82c8Baw (Ronnie, you’ll love this)….too funny, isn’t it?!  And one more my mom sent me (this one is more heartwarming than funny):  http://www.eaglerosepro.com/donistest/MovieClips.html.  I hope you like them!!  I’m very selective in what I’ll recommend for videos, so you can just assume they’re wonderful!!

Not much else going on…I’m enjoying Katie being home.  Ronnie and Kathy couldn’t stay this weekend, they just came up for the night.  It was great to see them (and Vlad and Klaus, obviously!!).  Although I’m happy to be home, I’m starting to feel a little bit down because I feel like my life is in such disorder right now.  Who knows when I’ll be able to work…what will I do when I grow up? :)…will I live with my parents forever? (I love you guys, but society frowns on those over 30 folks livin’ at home)…can you imagine me meeting someone I like, and then telling him I live with my padres, I’m a two-time cancer survivor (although personally, I think that’s cool—I think that would be something scary for him), I don’t have a job…not great advertising!!!  But I won’t be meeting anyone anytime soon anyway ’cause I’m not allowed to go most places!!!!!  Woe is me…just indulging in a little self-pity right now. 

You know what I’m thinking may have brought this on?  Reading the profiles of different people on Lori’s facebook (not your fault though, Lori!!  Guess I’m a little sensitive right now).  Anyway, it seems like most people are at least married, if not married with children.  They have homes of their own, lives of their own, and I didn’t realize it then, but I think it affected me.  I know, I know, everyone has a different path, but personally I’m pretty pissed about my path right now!  :)  Again, I’m very happy to be home, and I’m lucky to have so many people to support me; I’m just feeling down.  Nothin’ I can’t handle though!!

Have I told you how nice it is to be around a nice cozy fireplace again?  Yup, it’s always my favorite part of winter.  I’m missing my Seattle skyline, but Virginia, you’re still the best!!

OK, I’m getting sleepy so I better stop writing before it becomes gibberish.

Love ya,

Julie

Heeeeelllooooo there!!!

My mom and I arrived home safely last night after an uneventful flight.  I slept most of the time…well, you know, an airplane sleep, which is never quite fulfilling or comfortable.  :)  It was wonderful that we were able to find a free flight through Angel Flight West, although it’s too bad Corporate Angel Network wasn’t able to find anything because we wouldn’t have to deal with security and there wouldn’t be as many people on the flight.  It’s funny….once you have any problem with immune suppression, you wouldn’t believe how many people you notice coughing, sneezing and hacking up nastiness, doing so without regard for anyone around them, some of the time without even covering their mouths.  That is NOT OK!!!!  I was constantly using my antibacterial lotion, and I changed my mask about 10 times on the flight (they told us they’re only effective for about 30 minutes–once they’re damp from your breath, they’re no longer useful).  Also, most people doubt the effectiveness of masks in general, but at least people wouldn’t want to be near me, thinking perhaps I was contagious!!

Just a little note to all of you out there (especially during flu season):  wash your hands frequently, don’t rub your eyes or touch your nose or mouth, and when you don’t have soap around, use the antibacterial stuff.  This is my simplification of what they said out in Seattle.  :)  I did the best I could to protect myself on the plane, but that doesn’t mean that one of those people in the airport/on the plane, someone who was in line behind me or hacking a couple rows ahead of me passed on those germs, germs that I can’t really fight right now.  My white count is much lower than it’s been for a while, hopefully due to the Bactrim, as I mentioned before.  Pass it on to all your friends……don’t be a hacker or sneezer without cover-up!!!  It’s gross and it can be very dangerous for anyone who has a compromised immune system.  I consider it my job to get the word out!!!! 

OK, no more germs preaching.  Moving on, Thursday morning we were busy finalizing everything and getting ready to go, so I had no time to think about leaving Seattle.  I went to the clinic one final time to take all my Hickman care products (apparently they give them to patients in need or Doctors without Borders–everything is still sealed, but the homecare company won’t accept them if you try to send them back).  When I walked out of the clinic, I had a moment of sadness when I thought about the signicifance of the SCCA in my life, but I didn’t have any time to dwell on it, which I guess was probably good, ’cause we still had errands to run!  It was a go-go-go type of morning.  An SCCA volunteer drove us to the airport, and he was really nice.  We spent the next hour or so checking our luggage and going through security.  We had just enough time to grab some food (yummy chicken teriyaki) and get on the plane!  Too bad for anyone who’s bothered by strong smells.  :)  If they can cough and spread their gross germs everywhere, then I can at least enjoy a good meal.

When we got to Reagan, we discovered they lost my mom’s luggage….great…we’re exhausted as it is, Laura’s waiting for us, and they have no idea where her suitcase is.  The man who helped her was none too friendly, and all they could say was “It will be there no earlier than 5 PM tomorrow”…that was helpful!!!  Anyway, it just got here (it’s 11:30 pm on Friday).  I’m always intrigued to know how they lose luggage and how they find it again.  My two bags and my mom’s were all checked at the same time, and we certainly arrived early enough for the flight!  Do they just grab some and keep them behind just for fun to do a study on passenger stress or something?  It’s ridiculous.  I know accidents happen, but we’ve (as in anyone who came to visit us) had so many airline problems while I’ve been out in Seattle that it seems you never have a trip go without some sort of problem.  Geez….I feel like I’m complaining about nothing considering what happened yesterday.  Cheers to the pilot who did such a wonderful job in turning a possibly horrible situation into an inspiring story with a real-life hero.  I’m so glad everyone was OK.  I have to say though, it’s weird to hear about a plane crash while you’re in the airport getting ready to board a plane.

Anyway, what was I saying before I started complaining?!  So, Laura picked us up and drove us home which was very nice, especially considering it was late and she had to work today.  When we entered our neighborhood, there were fresh ribbons on the pillars at the front of the neighborhood, and yellow ribbons on many mailboxes…several neighbors added notes that said “Welcome home, Julie”.  The Dowdys really made me smile because they had hula hoops along with yellow ribbons and a sign welcoming me home…that was so creative!!!  Thank you to all of you for the ribbons, signs (there was also a big sign by our house).  I think I forgot to write above that ribbons were not only on mailboxes, but also on some fences and trees.

We pulled into the driveway, and I knew the best part of coming home was just ahead, greeting the dogs!!!  They wiggled and wagged, whimpered and kissed, and we got it all on video!!  Katie is going to work her magic and make a video that I’ll put on the blog…I know, you can’t wait!!!  Patience, my friends.  My mom and I entered separately, and Jameson and Guinness were exhausted at the end of all the greetings!  To my surprise, Laura had balloons, cards, champagne and a delicious chocolate cake waiting.  My dad had fixed up one of his famous fires (in the fireplace) , and he was also excited to welcome us home (he didn’t wag his tail or anything, but he was happy!).

I only had a small sip of champagne, by the way…I figured a sip wouldn’t hurt.  I would have loved to finish it because it tasted so good!  In time though.  As you can tell, they gave me a wonderful welcome home!!!  Thank you to Laura, Dad, and all of our wonderful neighbors!!!  Katie is here with me now–she got in just a little while ago, and Ronnie and Kathy will be home tomorrow.  Tiso stopped by to say hi, and it was nice to see him, of course.  It will be wonderful to have the family all together again!

Bella, on the other hand, could have cared less.  I wondered if she would respond in any way, but when I went out there to get her some new water, she didn’t do anything!!!  She even backed away from me when I pet her.  There’s your difference between cats and dogs!!  I guess I do need affirmation that my pets love me because I enjoy all the wags and wiggles, whimpers and kisses…physical evidence that they’re happy to see me!!  And to think that I saved Bella’s life twice and that’s the appreciation I get!!!  :)  I’ll let her off since she’s still feral at heart, but I’m pissed, Bella!!!

Let’s see…what else?  I’m feeling good, and I’m glad to be back in VA!  I slept about 12 hours last night, and it was a good sleep.  Jameson and Guinness stayed with me on the couches next to my bed in the living room.  I was so sound-asleep, I didn’t even hear the dog-walker when she arrived!!  The dogs went out with her, played and came back to sleep in the room with me…my loyal guardians.  They were very happy to see me unpacking my suitcases today!

By the way, “Frasier” is on now, and it’s bringing back good memories of sitting with Mom in our cozy living room at the Pete Gross House, laughing and going from episode to episode.  No Seattle skyline behind the tv tonight, but I am sitting here with Jameson at my feet and Guinness in his chair.  Katie’s sleeping in the chair next to me.  Although I miss the skyline and the city life, this is where I belong.  Home with the family.  It helps to know I will be in Seattle in October, and I can always visit.  When I looked around outside today, I thought, it’s so bare here!  I guess I’m missing those evergreens I thought I would hate.  :)  It’s beautiful though.  I love the look of a cold winter day, although I wish there were some snow with it!

Well, It feels good to be home, and I’m looking forward to seeing everyone.  The healing process for the transplant is far from being over, mostly because of my immunosuppression, but little by little I’ll build it back up with the help of Laura’s strong cells, and the support of all of you.  I can never explain how essential and how touching your support was and is for our family.  We feel lucky to have you.

Goodnight from 7907 Oakshire!!

Love,

Julie