That is the affirmation I keep repeating.  I always use visualization as part of my healing, but I constantly forget about the power of affirmations.  I know, it sounds creepy and new-agey, but it seems to be fairly common in the cancer community. So, when I’m taking a shower, laying in bed, playing with the dogs, driving around town (you get the idea!), I repeat these three phrases to myself.  It’s the answer I prefer when I ask myself what lies ahead…Like one of my favorite songs, I’m always wondering what will I be, who will I love, what awaits me in coming years?  The answer of course is “que será, será”! If you haven’t heard the song, you need to listen to it…it’s a classic!  http://www.youtube.com/watch?v=xZbKHDPPrrc.  “Whatever will be, will be”; this phrase couples perfectly with my basic motto of going with the flow.  However, I thought I better specify a little bit more clearly how I perceive the years ahead:  I will recover fully, I will stay in remission, and I will live a normal life.  There is absolutely something to be said about the power of positive thinking.  It’s certainly more fun than worrying all the time (but don’t think you’re getting off easy—I’m sure there will be future posts where the worrying comes back to pay me a visit, and I pass it right on to you to relieve myself of its burden)!

But no worrying on this post.  First, here’s a little youtube video to entertain you.  This is what Jameson is capable of…herding is in his blood.  Unfortunately for him, there are no sheep around these parts, so he settles for herding his humans which certainly proves difficult because they are so stubborn.  Although he has yet to have the chance to implement his skills, I have no doubt he would take to the fields as Guinness takes to water….guess that doesn’t make much sense if you don’t know that Guinness absolutely loves water!!  Anyway, check this out.  I think you’ll really enjoy it: http://www.youtube.com/watch?v=D2FX9rviEhw…amazing, isn’t it?  Now, with a little work, Jameson would be excellent at that!  We actually have a gift certificate to take him and Guinny out to a farm here in VA so they can practice herding.  We were going to redeem it last year, but then I went and ruined everything, so hopefully we can arrange it for this year instead!

OK, before I tell you more about my appointment with the nurse practitioner last week, you have to hear my new favorite song…I drove around all week last week putting it on repeat…I love the beat, and it’s lotsa fun to sing along to.  Let me know what you think:  TgeWbhttp://www.youtube.com/watch?v=5v7Z3w.  Catchy little tune, don’t you agree?  Thanks for making me a copy, Katie!  The whole CD is really good, but this one is by far my fave.  Now you can feel like you were practically in the car with me as I drove around this week, because I played it over and over and over.  :)  Needless to say, I’ve been humming it too–it was like my soundtrack for this week.  And now for things I found out at my appointment:  I can have a glass of sangría at your wedding, Paloma!!!!!  When she told me that, I pushed a little further and said, “So, I can have a glass of wine with dinner now?”  At least I tried.  The answer was no.  Well, poop on her for ruining my fun!  hahahaha  just teasin’…I know it’s for my own good.  I have to stay on Acyclovir (an anti-viral medication) until October, so maybe after i’m off of it, I will be more free to enjoy some wine and cider.  Not that I drank a lot of it before, but you know how it is when you’re not allowed to have something…you want it all the more!

OK, continuing with the appointment, she said my white count still seems “putzy” (her words, not mine), but she’s not worried about it.  It could be the Dapsone (an antibiotic) is suppressing them (and I will be off of the Dapsone on April 7th), it could be that I have a slower engraftment (here again I was confused because I thought I was already fully engrafted!)…I plan on asking my doc more about it in two weeks when I go back.  When I asked her about secondary cancers, she said they usually don’t happen until many years later, the result of high-dose chemo and radiation…I don’t think too much is known about the iodine 131 treatment I had.  In any case, it doesn’t happen until later and it typically happens in the form of a blood cancer.  I was under the impression it could be any type of cancer…skin, breast, etc…again, I will mention it to my doctor to get more details.  Hearing more about the possibility of a secondary cancer fifteen, twenty years down the road scared the crap out of me.  I know once you’re a transplant patient, you must always be hyperaware of your body and how you feel, and you must deal with this for the entirety of your life, but I guess I didn’t realize the severity of the possible problems.  When she told me that, I thought “Well, great!  Because if I get another blood disorder, that’s it…I’m a goner!  I already had a transplant…the only possible thing they could try on me is a research study, something about Laura’s T cells”…I don’t remember the details.  Thinking about it now though, research constantly leads to new discoveries and treatments, and who knows where we’ll be in fifteen to twenty years?

To be honest, I hope I never need to reap the benefits of future research, because I would like to be carrying on with my normal life, you know, the one I envision in my affirmation.  I forgot to add one phrase to the affirmation:  ….and I will live a normal, facial hair-free life.  :)  Guess what?  I shaved my eyebrows the other day with my nose-hair clipper.  I’d been thinking about it, but I thought, well, there will be some stubble and it won’t look good, but actually there’s a big difference!!  Ultimately, I will remove it with waxing/threading/sugaring, but that won’t be for a while.  The nose hair clipper doesn’t leave marks or irritate my skin, and I look much better, thank goodness!!

It was actually quite the week.  I shaved my giant eyebrow, went to see the nurse practitioner, picked up my bike, RODE my bike (I was breathing quite hard the whole way!), went to a movie (”I Love You Man”….hillllarrrious, by the way!), slept at Laura’s house, went to my young adult cancer group at Life with Cancer, worked on a photo album with Lori, and hung out with Ronnie, Kathy, Katie, Vlad and Klaus!!  It was wonderful!!  I hadn’t been to one of the young adult group meetings since last spring, and it was so nice to reconnect with everyone.  There were many new people there, in fact the meeting was probably the largest one I’ve ever been to.  I wish it weren’t so large only because I hate to learn about cancer striking more people.  Unfortunately, there is nothing I can change about that, but I know that we all learn from each other.  We learn how to cope, what questions to ask, how to move on with life following treatment.  I certainly didn’t want to be in this position, but I feel that because I’ve faced cancer twice, and I’ve lived beneath its shadow for just over four years now, I’m somewhat of an expert.  I think everyone in the room is or is learning to become an expert in their specific disease.  We all have valuable information/advice to share, and having an outlet where we can do so is quite reassuring.

In other news, did anyone notice how everything seemed to turn green overnight on Friday?  I woke up Saturday to a beautiful rainy day, one of very favorite things, and when I drove around, I noticed all lawns were bright green.  More flowers were blooming, especially the cherry trees, bugs were singing, the air smelled different….it appears as though spring has definitely sprung!!  Hallelujah for that!!  Don’t get me wrong, I love the winter (as you should know by now!), but I get so excited for each new season to start…a fresh start and new growth to attract our eyes, new aromas to fill our nose, the spring symphony of bugs and birds (very different from the summer and fall ones).  It’s especially delightful to play outside with the pups and breathe in the smoke from the fireplace carried by the soft breeze blowing leaves across the yard.  The two seasons seem to be mingling for a while, and the days they create together are the best days of the year.

I have my window open so I can enjoy the beautiful evening too.  I’m getting pretty tired now, so I will say goodbye for now.  I hope you all enjoyed your weekends as much as I did mine!  Happy almost April!!

Lots of love,

Julie

I’m feeling pretty itchy right now, and I’m pretty sure it has to do with the fact that I carried a big (about an inch or so) spider outside this morning….not in my bare hand, mind you, but in a paper cup with another paper cup on top so it didn’t try anything sneaky like jumping out.  Isn’t it funny how one interaction with a bug or a story about bugs can cause your ankles to start feeling a little tickle…then you feel the need to run your hand through your hair…and so on and so forth?  You may ask, “why didn’t you squash it?”.  Well, I just prefer not to, since they eat some of the bad bugs, and they aren’t out to get me (that I know of).  Who knows?  Maybe they have spider conventions and they refer to me as “the kidnapper”…I constantly separate them from their families when I gently dump them out of cups into various parts of the yard.  I assured the little guy today though that he should find lots of friends and food outside, and that I hoped I wouldn’t find him back on the kitchen floor.

In other news, I had more pleasant dreams last night!  Oh man, I hope I don’t dream about spiders tonight!  I remember hearing on Howard Stern once that you swallow 7 spiders in your sleep during your lifetime…is that true?  I am not looking up any spider stuff on the Internet tonight because I will most certainly dream about them!

I really enjoyed my day today.  As you can see below, I played with Husky and Max (and Jameson and Guinness, although I figured you were growing tired of all my photos of them ), and I spent several hours painting with Mrs. Dowdy.  I was nervous about painting, because I haven’t done it since middle school, but I told myself, “this is for fun!  No one is grading it!”.  So when I sat down at the table, I felt relaxed and ready to give it a try.  I worked in acrylics and began painting my favorite flower from Seattle (see photo below).  I didn’t feel self-conscious, and Mrs. Dowdy was a wonderful teacher, constantly encouraging me.  I look forward to doing it again!

I just checked http://newyork.yankees.mlb.com/index.jsp?c_id=nyy, and the opening day is 13 days, 18 hours and 40 minutes away!!  I’m looking forward to the comforting sights and sounds of baseball, and also to reacquainting myself with the team because I paid practically no attention to them last year.  I’m baaaack, and I vow to be a better fan this year…but hey, I had a pretty good excuse last year, don’t you agree?

Tomorrow I’ll see the transplant NP at my office, and I have a long list of questions to ask, from, “Can I drink sangría at Paloma’s wedding?” to “What should I expect when I finish my taper of Cyclosporine and stop the Dapsone?”.  I will pass on any information to you!

I have one more television commercial to comment on:  https://www.getloudandclear.com/ver4/index.asp?refcode=ldnclr4…it looks like a handy device, but again, the commercial just cracks me up, especially the one where the lady is listening in to what her neighbors say…well, that one and the cocktail party one where the women are talking about how handsome the new guy is, and he’s listening in from across the room.  I don’t know how you feel, but I think I would find it annoying to hear every conversation going on around me, especially if someone says something bad about me, like “I can’t believe she’s wearing that shirt!”.  That’s right, they don’t put any of the negative stuff on the commercial…come to think of it, wouldn’t it be funny if they did? 

OK, “Medium” will be on pretty soon, so I’m off, but I hope you all enjoyed your Monday!!  I’ll be picking up my bike tomorrow, so be prepared to hear about my cycling adventures!  Maybe “adventure” isn’t the right word…they’ll be more like “neighborhood jaunts”.

Love ya,

Julie

Hi there!  I was just looking through photos from last year, pre-Seattle through today.  The Seattle ones made me nostalgic, not to be there for any clinical purposes of course, but to be there for the enjoyment of the city itself.  Don’t you think I should write a travel guide for Seattle?  I feel like I’m its biggest fan…if you can say a city has fans.

I was looking through the photos to find some good flower ones because I’m going to Mrs. Dowdy’s house tomorrow to paint!  Now, I took art classes many, many years ago, so I’m not expecting a masterpiece, but it will be fun to learn how to work with the paints again.  And I know the company will be wonderful as well! 

So guess what?  I’m looking forward to sleeping tonight because the past two nights, I had good dreams.  I can’t remember much about them, but I woke up happy and ready to start my days.  What a difference!!!  I wonder if it has to do with the fact that I’m reading more and more each night of my Maeve BInchy book, and like all her books, it’s full of interesting characters and lots of detailed descriptions about the Irish towns where the stories take place.  I guess it doesn’t matter why I’m having good dreams as long as I’m having them, right?

It’s been a relaxing weekend…you know, the kind where you sit down for hours to savor your coffee and devour whatever reading is in front of you—magazines, the newspaper, a book.  It feels as though life is as it should be, dogs resting on your feet, Dad grinding up the coffee, good music on the stereo.   OK, that’s specifically my life, but you know what I mean!  We also enjoyed a deeelicious steak dinner with Rachel and Jason last night, then we played a little bit of “Bananagrams”…if you haven’t played that game, you need to!!  Tiso’s aunt sent it to me in Seattle, and we really enjoyed it.  Speaking of gifts I received while out there, the Thiels also sent me some delicious chocolates made by another neighbor’s son.  Look below for a picture of them!  My mom went out yesterday and surprised us with some…what a treat!  These (http://artisanconfections.com/) are the best chocolates I’ve ever eaten!  Gobind, you know what I’m talking about!!  You had the pleasure of enjoying some out in Seattle!  It’s a good thing I did some exercises for my knee today and spent lots of time playing with the dogs in the yard, because I certainly enjoyed my fair share!

I’m looking forward to the upcoming week:  I’ll get my bike back, I visit with the transplant nurse practitioner Tuesday, tomorrow I paint, I get to play in the yard with my neighbors’ dogs as well as my own, I may go out and see a movie…it’s a full week!  Also, I’ll probably finish one book and start another!  Don’t you love that?  I have many, many books I look forward to reading, and it feels good to have the energy and focus to read them (I took so many to Seattle and barely read anything!!).  I’m also looking forward to the coming months because I get to go to Cape Cod for a wedding in July, and then we head out to Seattle in October.  It’s fun to think about these travels, especially since I’m still relatively isolated here at home.  I don’t think I’ll ever take for granted the luxury of going out into public.

OK, let’s end this with some entertainment.  My mom forwarded this along to me…it’s hilarious; you have to check it out:  http://www.youtube.com/watch?v=bJm4MqhWLcA.  Also, my dad and I are currently watching a show about the world’s deserts, and I wanted to share this clip with you:  http://www.youtube.com/watch?v=e0qDq6DqgoA…It’s very educational, but most importantly, it’s entertaining.  Doesn’t it look like they choreographed a dance?  Note:  you must watch it all the way through in order to see the best part.  Another question:  why is the male always prettier than the female?  Aren’t those colors beautiful?

Hope you all had a wonderful weekend, just as I did!

Lots of love,

Julie

Thought you might appreciate an alternate ending to my previous post today…the nightmare cloud no longer looms quite as dark over my head.  I went out on a wonderful walk with Mrs. Dowdy, we ran into another neighbor, Jason, and we visited with Mr. Dunetz and his beautiful horse, Lily, who is pregnant.

Meet Lily...she will be having her baby verrry soon...I believe the next week or so!! Here she is with Mr. Dunetz, Mrs. Dowdy and Jason

She should be foaling very soon!  Thank you all for brightening my day!!

Enjoy your weekend!

Julie

Looks like another beautiful day out there!  My hands are still thawing out a bit though after throwing the frisbee and hitting the ball for the pups.  I think I have to bundle up a bit more when I take my walk.

The good thing is that it’s 11:42 AM and I’ve had my breakfast, I played with the pups, and now I’m working on the blog (obviously).  I think the dogs figured out a way to wake me up.  Guinness starts talking and whining like he wants to go out, so I get up, open the door, stand out on the porch like a dummy saying “OK!  Go potty!  Go hurry up!”, while they stare at me.

Kathy stayed over last night after teaching at Mason, and the dogs were verrrrrrrry excited to see her!! They never sit together like this in someone's lap!! It was good to see you, Kathy!!

They turn around, walk back into the house and into the family room as if to say, “It’s time to start the day!  No more going back to sleep.”  Pretty tricky, don’t you agree?  It’s like they’re leading me outside to greet the day, then ushering me into the family room and kitchen to eat my breakfast.  Ok, Ok, they probably aren’t thinking it all through like that, but you never know! 

One thing is for sure:  I definitely did not want to go back to sleep this morning.  I had the worst nightmare I think I’ve ever had.  You guessed it:  I dreamt the leukemia came back, but I also had strange bumps all over my body which was apparently the sign of a very rare secondary cancer.  They told me I had a couple months to live, and I kept saying over and over, “I’m not ready to go.  I have too much to do!  I don’t want to leave yet.”  I also worried about the dogs, and kept asking “What about the dogs?  They don’t understand that I’m dying…they’ll think I deserted them.  What can I do to help them?”  It felt like the nightmare continued all night, and I kept repeating those comments.  It felt so real.  When I woke up, I was relieved it didn’t happen, but only slightly because the fact is that I don’t know if the cancer will come back or if I will develop a secondary cancer.  I don’t know how long I will live, and if anything did happen, then no, the dogs wouldn’t be able to understand.  I think I’ve read too much long-term follow-up material and I’m sure the medical dramas I watch (”Grey’s Anatomy”, “Private Practice”) are definitely not helpful.  I can limit the reading and perhaps change the time of day when I watch the shows, tivo-ing them and catching up in the morning.

Ronnie and my mom helped me by pointing out that this is not an unusual worry to have, and I know that.  I wish it didn’t have such a strong hold on me.  You probably feel like you’re reading the same post over and over again lately, huh?  I have no routine, I’m worried about relapse.  I guess I figured I’d write about it again because this is how I’m experiencing it.  The same worries haunt me, and I have moments when it seems like no big deal, and then I have a nightmare like last night, and I wonder how I’ll trick my mind into concentrating on something else other than cancer and its dangers.  I am so looking forward to my bone marrow biopsy/aspirate so my mind can rest for a while.

One thing that does help me is to remind myself of all the survivors out there (myself included):  Andrew, you’re on the top of my list!  I’m always thinking of you and your family and how well you’re doing.  By the way, LTFU (long-term follow-up) is looking for photos to put on their walls, and I think you should send one in!  I looked and looked for you when I was out there, but I never found a picture of you!

Katherine and Aunt Barbie, I think of you.  Katherine, I also think of Pat and Margaret.  I think of my friends in the young adult support group at Life with Cancer. Shara, I think about you.  Leslie, I think about you and Rebecca.  Jen, Sue and Rich, I think about you.  Bill, I think about your sister.  Michael, I think about your dad.  There are so many survivors that I know about…there’s no way I can include everyone on here!  Sure, they’re all different cancers, but hearing the word “survivor” is motivation for any patient.

I found this article yesterday, and I just loved the idea of healing through adventure: http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/986.  It made me excited to get out there and ride the open road….and I’ve never been on a motorcycle!!  :)  Those are some cool survivors, and I’ve added them to my list of people to think of when I get bitten by the damn worry bug again.

I also read an interesting article about cancer-related fatigue (CRF), and how it is fundamentally different from fatigue felt by the general population.   According to Dr. Wendy Harpham, “unlike the tiredness that healthy  people feel at the end of a long day, CRF is more profound and difficult to ignore.  It impairs your ability to function and is less predictable than normal fatigue, and one night’s rest does not relieve it”.  So for the meantime, I will blame some (not all!) of my sleeping late on this.  :)  While I’m at it, I might as well use it as an excuse for other issues too, because she goes on to say that CRF “has other symptoms than just tiredness, such as difficulty concentrating, poor memory, irritability, changed mood, weakness, decreased sexual desire, clumsiness, or loss of interest”.  Does it count if I was already clumsy before any of this happened? 

Anyway, I’m working on forgiving my body when it feels tired or weak, rather than constantly pushing myself to try to do more.  I guess I need to acknowledge that the transplant was only about 6 months ago, and I can’t rush normalcy.  It will come in time.  In the meantime, I’ll do my best to distract myself.  It’s all about the everyday joys:  “Joys come from simple and natural things:  mists over meadows, sunlight on leaves, the path of the moon over the water” (Sigurd F. Olson).  The “path of the moon over water” makes me want to visit the ocean or relax by a lake…what a beautiful visual that phrase creates.

OK, one last thing for today:  HAPPY BIRTHDAY, LORI!!  (and Jameson too!!!)  Lots of good wishes for a wonderful new trip around the sun (I totally stole that phrase from the song I mentioned on the blog several weeks ago )!

Love,

Julie

I feel like this whole cancer experience is like getting a tune-up….or maybe it’s better described as an “overhaul”.  Anyway, it seems that my bike needs one too.  My dad’s bike was fine, but mine was a little beaten up from previous riding days…poor thing.  I also learned that helmets only last about five years, because the foam on the inside starts breaking down.  So I need a tune-up, new helmet; all-in-all, it’s like a fresh new biking (sorry, cycling) beginning.  Pretty exciting, I think!

I’m sitting here now between my pups, reflecting on my day, and picturing how tomorrow will play out.  I’m happy to report that my doctor will do a bone marrow aspirate/biopsy on April 7th (when I see him next).  I’m going to see the transplant nurse practitioner next week, but when it comes to bone marrows, you stick with who you know!  My doctor does such a wonderful job…he numbs me, waits for it to work, numbs me some more, and then he gets out the big guns (well, technically, it’s a needle).  :)  At that point, it’s just pressure.  What am I saying?  You know all this?  I’ve explained it before, so you’re experts!  You basically saw me get a bone marrow what with the photo shoot we did at SCCA!

I’m getting pretty tired now, and I want to read a little Maeve before bed.  I’m going to do that relaxation CD again too…it knocked me out last night!  Too bad I still had nightmares…slowly but surely, I’ll work on my sleeping issues.

I wish I had something profound to say today–something I learned or something cool I saw.  I just enjoyed playing outside with my neighbors’ dogs and my dogs.  Boy was it gorgeous out there!  I hope you all had the chance to get out and enjoy it (at least, those of you in the VA area–I’m not sure how the weather is in the rest of the country or world)!

I’m off.  Enjoy your Thursday!!

Love,

Julie

Last night, I took the facebook quiz “Where should you live”, and guess what popped up?….Ireland!!!  How perfect is that, considering it’s next on my travel wish list?  Not to mention that it was the night before St. Patty’s Day. 

I hope you all wore your green and enjoyed your day.  I went all out…a green sweater, my very favorite jacket (a bright green with my special orange leukemia awareness pin).  It was a good day.  I woke up at 11 (the latter end of the time period Lori suggested–I figure I’ll work myself up to the earlier hours!), ate breakfast, did some errands around the house, let my friends’ dogs out, met with my social worker, played with the dogs, put air in my bike tires (well, technically, my dad did that!), relaxed, watched some “Law and Order” and here we are–it’s 11:37.

I have to admit to you that I was a little nervous getting on my bike because I haven’t ridden it for, I’d say, at least five years.  Poor bike, stuck in the basement next to the ping pong table.  I plan on getting it some extra loving care though.  Tomorrow I’m taking both my bike and my dad’s to a local store to have them checked out and make sure they’re suitable to ride.  I’m no bike expert, so I want to make sure nothing happened to it while it was sitting there so patiently, waiting for me to come take it out again (and ditto for my dad and his bike).  I very tentatively rode it around my driveway, up the hill, down the hill, checking the brakes.  It’s confirmed.  I’m definitely old now because I am scared to fall off my bike.  I didn’t worry about that when I was younger!!  Fear is good though.  It’s a good motivator because it irks me, so I will push through until I ride over it with my bike.  :)  Plus, it makes me extra careful, and there ain’t nothin’ wrong with that!

My appointment with Shara went really well.  She gave me a daffodil plant (see pictures below)!  That’s not why it went well…because she gave me something…but I told her about how I’m having a difficult time implementing a routine, how I slept ’til 1 PM yesterday, how I had a nightmare about the leukemia coming back last night and how I plan on requesting another bone marrow biopsy/aspirate.  We also talked about living wills because I wasn’t sure if the one I filled out in Washington was applicable here in Virginia.  She told me about a document titled “Five Wishes”.  I need to read more about it, but apparently it’s different from other living wills because it doesn’t only focus on your medical wishes.  It also includes spiritual, emotional and personal needs.

I’m not requesting it because I think I’m going to die soon (but I’m pretty sure it’s unavoidable at some point! ), but rather because it’s so important to have all your wishes planned out.  I’ve talked to my family about some of these wishes, so I’m pretty sure they know what I would want, but putting it in writing on a legal document is my last step.  Then I’ll get all that info out of my head, so I can continue on with my life!

And speaking of continuing on with my life, I told Shara about how I’m looking forward to going to three weddings this year.  Paloma, I mentioned that I was disappointed I wouldn’t be able to drink some sangría at yours, and she advised me to ask my doctor if I can at least have one glass.  :)  I’m wondering if the “no drinking” rule will still be in effect since I’ll be off the Cyclosporin and Dapsone by then?!  I added it to my list of questions for the doctor. 

I also called the office today to ask if he will do another bone marrow aspirate/biopsy on me when I go in.  Last night, I dreamt that I had bumps all over my body, and that it was GVHD.  I also dreamt that my nose would not stop bleeding, indicating a significant drop in platelets and likely leukemia relapse.  It was not a good night for sleeping.  When I woke up, I asked myself, “How can I achieve peace of mind?”, and the only answer was to request another look at my marrow.  I truly believe that it is not back, and that my body is trying to work its way back to normal, but I need to know.

I hate that this will be a worry for years to come, but everyone who is labeled as “cured” has walked where I am now.  Day by day…there’s no other way to face it.  As the saying goes, “it starts with a single step”, right?  There’s no skipping ahead to five years from now.  I wouldn’t want to miss these next five years anyway, because I have a feeling they’ll hold a lot of happiness and excitement for me.

OK, now I’m trying to think of something happy for you to read and me to think about before sleeping…did you see the stars tonight?  Beautiful!  And the spring bugs are out, starting their nighttime serenades.  Hey, what ever happened to the whippoorwill (by the way, I know it’s a bird and not a bug — I was just thinking about it)?  When I was little, they would sing at night, and it scared me.  My mom always told me, “Listen!  They’re saying ‘go to sleep…you are sweet!’ “.  Apparently, I’d reply, “They are!!!!” and fall asleep.  I think I’ll imagine my mom’s saying as I drift off tonight so it can bring me sweet dreams.  :)  Check out this site to hear the whippoorwill–it’s not too far down the list:  http://www.mbr-pwrc.usgs.gov/id/songwav.html…hmmm…doesn’t sound like “go to sleep…you are sweet!”  :)  I think I must have been a gullible child. 

OK, I’m off to read a little, and listen to the relaxation track on my ipod.

Even though it’s 18 minutes past St. Patty’s Day, I figured I’d end with an Irish blessing:

“May love and laughter light your days,
and warm your heart and home.
May good and faithful friends be yours,
wherever you may roam.
May peace and plenty bless your world
with joy that long endures.
May all life’s passing seasons
bring the best to you and yours!”

Lots of love,

Julie

I did a bad, bad thing today.  I woke up around 10:30 or so (after snoozing several times), threw some laundry in the washer, let the dogs out, took my pills and gave Jameson his antibiotic, and then I decided to lay down for 20 more minutes.  I woke up at 1.  Now, here’s the thing:  I could have easily stayed awake at 10:30, but because I knew that any activity I chose to do around the house, I would be doing solo (starting a project, emptying the boxes in the room), I was unmotivated.  Of course, when I woke up, I felt guilty, especially after reading what Judy (our awesome dog walker) wrote: Jameson played a lot (as usual ), but Guinness seemed sad and just laid on the steps.

Perhaps I’m giving myself too much credit (this is what my mom thinks!), but I truly believe that Guinness feeds off of my energy.  Although he may seem like a very independent dog, he gets his security from the family.  He acts like a cat, sitting in his own chair and not asking for much attention, but he’s happiest doing it when we’re all with him.  Does that make any sense?  He picks up quickly on change, and this morning’s routine was anything but typical!  He played a lot with me in the afternoon, so that made me feel better.

Regarding tricks for waking up earlier, Lori suggested setting a window of time for my alarm in the morning, say between 9 and 11.  This sounds quite reasonable.  Hopefully I can start with the later time, and gradually set it earlier and earlier.  Hmmm…this is such a boring blog tonight!!!!  But this is my life, so I will share it! 

Of course when I sleep late like today, I worry about leukemia again.  Is it back and making me more sleepy?  What were those minor aches in my back last night?  When I force myself to think about it, I believe I’m being too hard on my body.  It’s still recovering from the transplant, and I’ve been trying to push it a little more lately with more walking, dancing, lots of laundry.  I visualize the minor aches as more white cells growing in the marrow.  But I still worry.  I watch tv and distract myself, but when a commercial comes on, I wonder, “what was it that was irking me just a little while ago?—oh yah, worrying about the leukemia”, and an uneasy feeling fills my stomach and my mind. If I can’t erase “worry” from the dictionary, I would love to just shake it off and put it in a box high up on a bookshelf, so I can forget about it…or better yet, I’ll put it through the shredder…yah, that would be perfect!

So here I go again, passing the worries off to you!  Also, simply putting pen to paper and writing “request another bone marrow biopsy/aspirate” frees me of worry.  Now I’m off to read some Maeve Binchy.  I find that filling my mind with fictional stories is quite helpful also.

I hope you all had a wonderful Monday!  Happy almost St. Paddy’s Day!  Don’t forget your green! 

Love,

Julie

Well, thanks a lot, Laura!!!!  Guess what I dreamt about last night?  That’s right…people smelling poop to get high.  Needless to say, it was pretty disturbing!!  Tonight, I’m definitely going to either watch or read something funny and happy before hitting the hay.  It’s 5:49, and I’ve been sitting in the same chair all day, writing e-mails, doing some internet research, reading the “Washington Post Magazine” (Kristin, you got me hooked!), taking breaks only to dance around and play with the dogs.  I think I need to go play with them outside before we lose daylight, so I’ll be back.  No day is ever complete without playing outside with Jamie and Guinness.

OK, I’m back!  It’s now 10:26 PM (don’t you love how I give you the exact time?–not 10:25 or 10:30, but 10:26).  It was a relaxing, lazy Sunday…oh, by the way, I haven’t been playing with the dogs the past five hours, just in case you’re wondering.  You know, they actually didn’t seem like they wanted to play today–I think maybe they enjoyed their lazy Sunday as well.  I guess I can be lazy any day of the week right now, but there’s just something special about Sundays.  It’s nice that my parents are home, and we can all relax together. 

I’m looking forward to meeting with my social worker again this week, and I will be sure to let you know how that goes.  I actually don’t have any medical appointments this week!  Pretty exciting, don’t you think?  I should get started on one of my many projects…do any of you have any motivational words to help me get up earlier in the morning so I can make my day useful?  I wake up around 11 or so every day now, and I stay up ’til about 11:30 or midnight…it’s not as bad as when I first got back from Seattle, but I’m still not happy with my sleeping schedule.  I know I don’t physically need that much sleep, but it’s way too easy to snooze my alarm and roll back over, considering I don’t have many things that I actually need to be doing.  Also, do you have any advice about how to tackle a big project?  Mentally, I know I just have to get started, but I’m constantly finding other things to do.  Have I told you I still have boxes in my room from when I got home from Seattle?  Well, I do!  I mean, I don’t have many, but I do have a couple, which seems quite silly after being home for two months.

I still think about Seattle every day.  I picture myself walking along its streets, sitting by the fireplace at REI, enjoying the various restaurants, walking along “Julie and Carol’s Way”, looking out at the water.  I so wish it were closer to Virginia!!

Well, I’m getting pretty tired.  I hope you all enjoyed your weekend.  It was a good one for me!

Lots of love,

Julie

Happy Saturday, everyone (well, technically, it’s almost Sunday)!

What a wonderful day it was.  I went to my friend, Paloma’s, bridal shower today, and I haven’t seen her since before I left for Seattle.  I felt like my normal self almost, meeting new people and catching up with some whom I haven’t seen for a long time.  It’s interesting to be among a mixed crowd, where some knew of my illness and others didn’t (the latter were probably wondering, “What’s with the girl who doesn’t wax her eyebrows?  Someone needs to tell her that’s not the style these days!” ). hahahaha  Seriously though, although I enjoy talking about my experience, it’s also fun to be anonymous, and just be the hairy girl at the party.  :)  By the way, that should end relatively soon, I hope!!  My Cyclosporin taper ends April 6th, and I’m looking forward to that day!

Oh, and before I forget, Katie informed me that I spelled “tattoo” wrong about a hundred times in my last post, so I wanted to correct that!  Now I know–two “t’s”, two “o’s”…thanks for the info, Katie.  :)  OK, now back to Cyclosporin and hair.  So, yes, I’m looking forward to going off of it very soon!!!!  I actually plucked a few eyebrow hairs today–they were right in the middle–the connecting part of my unibrow.  :)  I didn’t do anything crazy, I just wanted to test it.  I did OK, but then bled a tiny bit, so I stopped.  My platelets are just so good right now that I thought it would be OK, but I won’t try again.  I was actually thinking of wearing makeup today.  Today was special not only because it was an important day for Paloma, but also because I actually dressed up a bit (OK, I wore a nice top…I admit I still wore jeans)!  Wearing that top made me feel pretty and proud all at the same time, pretty because it’s nicer than t-shirts and sweaters, and proud because it seems like a step closer to recapturing my identity.  I mean, dressing up means I’m A-OK, right?  I didn’t end up wearing any makeup because my eyebrows are so ridiculous, it just seemed silly to try and cover them up at all–no need to highlight the extra hairs, right?!!!  I got excited just thinking about wearing it though.  I know I’m a lot closer to being me again…my cheeks aren’t nearly as swollen, hopefully the hairs will disappear in April/May, and then I can use makeup again!  I’m working on fitting into my “skinny jeans”, and I hope to go back to Seattle in October wowing them with my appearance.  I’ll do a little visualization just for that special occasion.

You know what was funny?  On my way to the shower, I was driving down Braddock Road and I noticed a bus next to me.  The side of it read “US Army Band, ‘Pershing’s Own’”—that’s the band that includes SFC Colin Eaton who sings the version of “Precious Lord” that I love so much…I thought to myself, what are the chances of ever seeing that bus?  I think it was a sign to remind me that everything was all right, that someone’s lookin’ out for me.  I pray a lot to relatives who have already died, because it makes me feel secure to think about them looking out for me…I picture their faces, and imagine how they would reassure and encourage me.  I firmly believe one of them put this bus in my path today to remind me they’re listening and they’re still with me (maybe Mary Ann or Uncle Pete?…what do you think?).  Either way, it made me smile.  Don’t worry though…I don’t see dead people for real or anything…and speaking of, is there anyone else out there who thinks the “Sixth Sense” is one of the creepiest (yet best) movies ever?!!  Whenever I see a bike helmet, the first thing I picture is that lady beside the car door….oooooohhh..creepyyyyy!!

If my relatives are watching out for me, they’re probably having a good old laugh too, because I’ve really gotten into dancing around the house when no one else is home.  :)  I keep adding songs to my ipod, and I just can’t help myself when I turn it on!  It drives Jameson crazy…he runs to get a toy to keep himself from barking at me.  Guinness, however, gets super-excited and jumps on me (and if you know Guinness, you know how laid-back he is—this is not his typical behavior!!).  He loves music in general.  You should see him when I play the piano.  He comes and lies on top of my feet.  Jameson, however, runs to find  a toy again.

I was so in to the music today that I made a new CD called “Julie’s Most Random Mix Ever”, sharing copies with Katie and Laura as well (Katie, you inspired me to make it because of the country song we heard this morning).  I can never say enough about the power of music.  Suffice it to say that I sang and car-danced all the way to Falls Church for the shower, and from there to Haymarket to visit Laura, Tiso and Indie.  Haven’t you ever just loved a song so much that you can’t wait to get back in your car and listen to it again?  I love that feeling.  Part of the reason I love driving so much is because of the music…I obviously can’t be doing anything except for driving, so it represents one of the few times I actually sit and listen to the music just for music’s sake.  It makes traffic bearable.

So just a few comments about Paloma’s shower…as you can see from the photos I’ve included, it was a wonderful celebration.  Paloma, your friends and family are so easy to talk to, and today made me superexcited for your wedding.  Not that I wasn’t excited before, of course, but today was a little preview of what’s to come in April, and I can tell it will be a lot of fun!!  I’m looking forward to some salsa dancin’…I bet it will feel just like Spain has come to Virginia.  The hispana wannabe that I am, I know it will be a blast…I’ll have to see if I’m allowed to have sangría by then!  I hope no one tries to talk to me in Spanish though because you know, I only speak a poquito (pronounced poooh-keeee-toe with a country accent).  hahahaha  (sorry, it’s a special inside joke only Paloma and I share)  :)  It’s nothing crazy….one time she introduced me to a relative and told them I spoke a little bit of Spanish.  Well, of course I exclaimed “a little?!” and acted very sensitive about it, and I’ve never let Paloma live it down.  Not as funny without the full context, huh?  Oh well.  Anyway, Paloma, I am so excited for you and Tony!!  You two are good role models for how a relationship should be–you’re both very caring, respectful, and you can find humor in anything….I know you have many, many happy years ahead of you (and lots more trips to Spain too!).  Can’t wait ’til you have a party to try out all the new gifts you got today (except for you don’t have to wear the neglige…actually, I mean, please don’t wear the neglige.  :)  We just want food and alcohol).

As I wrote above, following the shower, I drove (and sang) all the way to Haymarket.  Dinner was yuuuummy (and I loved the jalapeno poppers or whatever they were called–would love to have the recipe, por favor), Indie was adorable, as always, and the conversation was scintillating, especially when Laura told us about the new way people are getting high…by canning their own stool and smelling the gas weeks later.  I think I could have lived without knowing that one!!  You’re all probably wondering why we were talking about getting high in the first place.  Well, Laura made these special brownies…….hahaha just kidding!!!  Katie has a new apartment, and her neighbors told her the former resident sold drugs from the apartment.  Somehow this led to a discussion over the most common ways people get high.  It was pretty disturbing, to say the least!  But that’s the Matthews’/Tiso family!!  There’s no topic we’ll shy away from!!!  But no more poop/gas talk, OK?  That’s just gross, and I’m going to try and forget you ever told me about it.

Well, it’s 1 AM now, Guinness is on his back with his feet up in the air (his late-night sleeping pose), so I’m going to sign off.  I’ll just end with a little shout out to Maria, one of my faithful blog readers.  It was so good to see you today, and if you aren’t able to come to Paloma’s wedding, we’ll have to all arrange another time to meet up.  Congratulations, and I can’t wait to see pictures when you add little Elise (is that how you spell it?) to the family.

Hope everyone is enjoying their weekend!

Love ya lots,

Julie

PS I included some photos of my friends’ dogs I take care of a couple days a week–aren’t they cuties?