Yay!!  It’s a very simply word, but when expressed appropriately, it conveys just the right emotion.  I was talking to my 8-year old cousin, Christopher, the other day, and he asked me when I was going to be able to go back to Virginia.  When I told him this Thursday, he shouted “YAYYYYYYYYYYYYY!”  Just thinking about it makes me smile.  His enthusiasm was contagious, and it reminded me how important it is to learn from children:  sometimes the simplest phrase will do, especially if you yell it out!!  :)  Christopher is very special to me, and talking on the phone is always so much fun!  We don’t get to do it often enough, but, Christopher, I love you, buddy!!!  Aunt Carol and I will talk to you when we’re back in Virginia—only 2 days left!!!!!!!!

My mom and I are doing well.  We had a busy packing day today, and I had two appointments at SCCA: social work and my departure meeting with my doctor and nurse.  The packing is going smoothly…we’ve already set home about 15-20 boxes…can you believe it?  How did we accumulate so much?  Well, we mailed stuff out here on the way out, but I don’t think it was anywhere near 15 boxes.  Prettttty crazy.

My appointments went well.  I was excited to receive a check from Social Security, which also gave me Medicaid as another insurance.  My social worker, Cathy, suggested that we take my Medicaid card down to the pharmacy and see if there was anything they could cover that we paid between November 1st and today.  Wouldn’t that be wonderful?!!  I will miss Cathy and our talks, but I’m looking forward to coming back to Life with Cancer to meet up with Shara.

My appointment with the team doctor and nurse went really smoothly.  The doctor said that everything looks great–my white count went down a little bit, but she is not concerned because sometimes Prednisone can cause that.  On the bright side, I’ve had all clear bone marrow biopsies/aspirates; a minor case of GVHD in the form of the rash I told you about previously (which they treated with Prednisone); and all the cytogenetics are normal. Regarding chronic GVHD, the likelihood of me getting it is 50/50, so be thinking gooood thoughts so I can skip all that crapola!!!

I would say that I worry about cytogenetics the most, because my translocation was so rare (translocation 7;21).  No one really knows what that means.  I worry, does it mean that it’s a type of leukemia that is easy to get into remission and stay into remission for a while, but it always comes back?  And then I remind myself that I have Laura’s cells now so it’s totally different than the first time-around with leukemia.  This time they’ve laid out all new grass (to steal Andrew’s comparison), and it will be slow-growing, but it will grow, and eventually, I will be a regular person, and not an immuno-compromised bubble girl.  OK, it’s not that bad, as you can see from my blog….I’m no bubble girl, but note that I do have to go to the off-times for dinner/lunch/movies (I want to see the “Bride Wars” whenever it comes out–doesn’t it look good?!–I know all you men out there are dying to see it!!!).

The doctor handed me a piece of paper which got me pretty excited….a cyclosporin taper!!!!!!!!  That’s right…we’re gonna get rid of the big grey pills that look a little bit like big fat ticks (thanks for pointing that out to me, Laurel!) and smell like a skunk.  It’s a long taper, but I should be finished with it in April or May, I can’t remember which.  PS This is the point where you yell “YAYYYYYYYY!!!” 

Everyone is impressed I haven’t had to return to the hospital as an in-patient during these last few months (knock on wood!–I don’t want to jinx myself!)…I guess I’m the all-star patient.  :)  Oh, one more thing!  I think they will probably remove my Hickman on Wednesday because I did well this weekend without the iv magnesium.  They upped my pill dosage to 12 pills a day, and that seems to manage it well.  It would be wonderful to remove the Hickman because the line is an easy source of infection.  I’ll keep you posted on it, and let you know whether they pull it or not.

Tonight my mom and I went to dinner with David and Hollie at….”Joey’s”!!  I loooooove that place.  You know one of the coolest things, when you order fish tacos, they bring them out in a taco holder.  This isn’t the exact one (Joey’s is steel or something and looks more modern), but check it out:  http://www.wdrake.com/WalterDrake/Shopping/ProductDetail.aspx?CID=Kitchen&SCID=Table+Top&ProductID=0000104365&SourceCode=20508000001&Affid=1 .  Cool, huh?!  I’d never seen one before…have you?

As our departure date nears, both my mom and I are reflective on our trip out here, what we accomplished medically (with your support and the help of the SCCA), and how the transition will be when we go home.  In some ways, the past few months feel surreal.  My mom and I both focused on getting me well, and had a lot of fun while we were at it.  We spent almost all our time together which was something very special for both of us.  We saw each day as a separate entity, and we did whatever we needed to do to get to the end of that day and enjoy some “Frasier” or just relax.

Now we’re ready to see our dogs, family, and friends, yes, in that order!  :)  We’re both excited to see how the dogs react after us being gone since late August.  We’ll find out soon!

I think my Ativan is kicking in because I’m gettin’ pretty tired.  Although it is also 12:36 AM on Tuesday, so that’s pretty late!!  I don’t have any plans for tomorrow though so I can sleep in a little. 

Anything exciting in VA?  I know everyone is going crazy over the inauguration…..it sounds like a big mess!

OK, seriously, my eyes are shutting and I can’t stop yawning.  Speaking of, David read in one of my magazines today that yawning is contagious, even with dogs!  I’m totally going to try it out on Jameson and Guinness to see if they do it too.

Ok, hasta luego!
Love from Seattle,

Julie

Hi all!  It’s 1 AM on Sunday morning, and I’m just getting ready for bed.  We don’t have any appointments this weekend so we plan on taking tomorrow to finalize a lot of the moving stuff.  We’ve already mailed ourselves 15 or more boxes, and there will be plenty more coming your way, Dad!  My mom’s right—you don’t realize how much you’ve accumulated until it’s time to move!

Today was pretty relaxing though.  We watched some Lifetime and then Cold Case stories in the AM (I love the Cold Case Stories…not the tv series, but the tv show that follows real-life cases.  I can’t explain why the cop shows and the legel dramas always fascinate me, but they do!

David, my cousin, came over in the early afternoon, and we drove him around town just a little to get a sense for the city.  He just moved to this area today, so we will be able to see him today and tomorrow which will be nice ’cause we haven’t seen him for a while.  We took him to “Buca di Beppo’s” for dinner, and you know how I feel about that place!  I can’t wait to get a group together sometime and eat in the kitchen!  Who’s up for it?!

Nothing medical to report except my joints are pretty annoying right now, especially my ankles and my knees.  I don’t know if it’s all from tapering off the steroids or if it’s a mix of things, but they’re sore…it kind of feels like what I would imagine arthritis to feel.  Hopefully it will go away soon!!

Anyway, my eyelids are feeling heavier each time I type, so I guess it’s bedtime for me!!!  This is a boring old post, huh?!  Nothing magical or exciting to report, no photos, just me telling you a little bit about my days and how they’ve gone.  I think my mind is still trying to get used to the fact that we will be leaving here Thursday…we can’t wait!!!!!

OK, I’m off to bed…seriously, my eyes are almost shut….I wish I didn’t have to get all the way up and put the laptop back in the other room….don’t you hate having to get up when you’re so ready to give in to the sleep?  OH well, I better stop whining and just do it, huh?!!

You’re probably asleep already from this blog, so I guess it doesn’t matter. 

I hope everyone is having a good weekend, and a great start to the New Year.

Lotsa love,

Julie

It’s Thursday! I only have a week left!!!

Angel Flight West called and confirmed that we have a flight on the 15th (originally they thought it would be the 16th, but there was nothing available that day, and we’re fine leaving a day earlier!). Isn’t that exciting news? Exciting, scary and wonderful. I’ve already explained my mixed feelings to you, so I don’t need to drone on and on, but suffice it to say that I’ve been very contemplative lately….about Seattle, about my transplant, my home, my family and friends, and just life in general. As I wrote yesterday, I just keep reminding myself to take things one day at a time.

I feel bad because my mom and I have been snappy with each other, but I know it’s the stress of packing everything up and “cutting the cord”, as I’ve heard many people say about the SCCA. It’s also the stress of preparing to get back into everyday life, especially for my mom because she goes back to work after this. I don’t have that to worry about right now. It’s hard for me to articulate my feelings; I’ve been grumpy (only with my mom though—I guess because I feel most comfortable with her, and I know she loves me, no matter what), but I can’t explain why. I think it has to do with various factors: leaving Seattle, the city life and the adventures we’ve had here; leaving the clinic where I know everyone is an expert on bone marrow transplants, and knowing the clinic is only a 15 minute walk from our house; packing (is anyone especially cheerful when filling up boxes and using that annoying tape that folds back onto itself and then you can never find the end of it again? )…really, the list could go on. On the other hand, I am soooo excited to come home, and I can’t believe it’s been so long.

Which reminds me….I think I need to warn you all about what I look like right now. =) I was looking in the mirror after taking my shower tonight, and I thought, “This is ridiculous…I should try and pluck at least the darkest hairs”, so I just plucked a few, but then I bled (a verrrrrry tiny bit), so I stopped. So here’s the thing: I have a mustache–there’s no mistaking it—it’s dark and it’s there!!! I have eyebrow hairs that have grown in between my eyes ’cause I normally pluck/wax and I haven’t been able to lately. I even have a couple little hairs on my nose and chin. AND hair is growing in from my hairline to my cheeks. To me, I look like a monkey….ok, it’s not that bad, but just be prepared because I don’t look like how I did when I left VA, and I don’t look the same as when many of you came out to visit. My cheeks are also puffy as you’ve seen from the photographs, but it might be more shocking in real life. I won’t be like this forever. In fact, tomorrow is my last day of Prednisone, so hopefully the cheeks will go down soon. As far as the hair, I might be on the Cyclosporin until April or May or even longer, depending on how I’m doing. There, I’ve given you fair warning, so you’re not shocked when you see me!!!

On a much more positive note (I should have started the blog with this!), my cytogenetics results are back, and everything from my last bone marrow looks great!! No sign of any abnormalities, and I’m still 100% Laura! Also, the skin biopsy was negative for GVHD. I had my last appointment with Victor and Sam yesterday–they worked with the respiratory study I signed up for, and my mom and I always enjoyed talking to them every week, even if we were there for them to flush out my nose, swab my throat and measure my lung capacity. I will be in contact with them over e-mail though because I continue the study by myself at home.

Today, I met with my team, and Peter (my PA) and Jackie said I’m their favorite patient! I’m going to miss them (not just ’cause they said I’m their favorite), and I know they’re favorites of my mom as well. I guess now I’ll have to start looking forward to October when I come back for my check-up, huh?!

I was just going over some of my meds because my levels of Cyclosporin and Magnesium keep changing. Anyway, I thought I’d share with you the medications I’m on because I don’t think I’ve done that before, and I think it’s important in understanding my life as a transplant patient. Sometimes I think I make it sound too easy, and although I’ve been extremely lucky with my health, I do try very hard to be a good patient, and one of the many challenges that comes along with that is managing my many medications. Here goes:

Cyclosporine (6 pills a day); Prednisone (almost done!!); Valtrex (2 pills a day); Bactrim (2 pills on Monday and Tuesday); Multivitamin without iron (yup, like a senior! :, 1 pill a day) ); Xyzal (sinus stuff, 1 pill a day); Lexapro (1 pill a day); Nasonex (nose spray, once a day); Protonix (1 pill a day); Magnesium Oxide (12 pills a day); Viactiv (1 yummy chocolate chewy a day); Yaz (birth control pills, although not for that reason…my doctor prescribed them as an alternative to hormone therapy so that I get more regular amounts of estrogen in my body…there doesn’t seem to be much hope that I’ll ever regain ovarian function, which is upsetting, but I’ve had lots of time to digest that. It doesn’t make the situation any better, but I’m alive, and that’s what matters. There are certainly many children who need happy homes, and someday I hope to adopt).

Anyway, I got sidetracked…there are a couple more pills: Fosamax (to reverse the osteopenia and osteoporosis)–I will start that this weekend; Vitamin D (1 pill daily); and Ativan (2 pills nightly to sleep). I’ve been doing a magnesium iv as well every day, but this weekend we’re going to see how I do without it…cross your fingers!! And that’s it!! It takes me about an hour every Saturday to put all my pills in the pill chest for the week.

Fun post, huh? hahahaha I guess I better try and get some sleep…it’s 12:45 AM and my mom and I have appointments to get our hair cut tomorrow…I know I desperately need it–I feel like my hair’s turning into a mullet! Wouldn’t that just top off my hairy, puffy look!! Oh, ps, I’ve gained 15 pounds while I’ve been here, so I’ll look a little rounder in general, so you’re prepared.

OK, seriously, I’m off to bed. I hope everyone is doing well, and I’ll put up a more exciting, uplifting post next time!!!

PSS I AM happy and proud of my body because of what it has been able to do…to take the chemo, iodine, radiation, Laura’s cells, the medications and use them to rid my body of leukemia and start a brand new immune system….I try not to forget that when I complain about my hairy face and everything.

Lots of love,

Julie

Hellllloooooo there!

As part of my parting blogs, I wanted to showcase all the dogs of Seattle in one post. These guys all helped my mom and me smile during our time here. This is a city of dogs (and cats), specialty pet stores and happy owners. No wonder I like it here so much!! The pics are in no particular order–I just wanted to flood you with photos. You’ve seen them all before, but I think seeing them all together will truly make you realize what a dog friendly city this is.

All of you pet lovers out there know how important these guys are in our lives. I’ve had several in my life, and I thought I’d just dedicate this post to them. This is for Thunder (our Newfoundland whom we had until I was 9); Sherlock and Agatha (Border Collie littermates who brought us a lot of joy throughout my elementary school, high school, college AND post-college years); Bella (our kitty who came as a stray about 7 years ago exactly and slowly evolved from a feral cat to a loving and very spoiled one); and of course, Jameson and Guinness (our Border Collie and Australian Shepherd mix), who are wonderful company, and with whom I have a very strong bond, I think especially because they were home with me both times I had leukemia (note the word “had!). Well, and also just because they are special pups.

Thank you to all the dogs and owners who helped make our stay out here feel more normal, especially Carlo. I’ll miss my walks to the Irish pub to see him, but maybe I’ll come back and visit him in October when I’m here for my check-up. OK, I’m almost done talking about dogs…I just wanted to include a quote because you know how much I love quoting others!

“Dogs are not our whole life, but they make our lives whole”. - Roger Caras

I’m definitely a believer in that! I know some of you may think I’m a crazy dog lady, but really I’m not!! I just know I’m happier when they are around.

I’ll stop with the dog talk now. So we went to a Long-Term Follow-up class today, in order to have all the information we need once we leave SCCA. It’s kind of weird. I was talking with my nurse, Jackie, the other day, and she said that I’ve been able to see so much, it’s kind of like I just had a transplant on the side! My mom and I keep busy and so many wonderful visitors came out here over the past few months that it was easy (for the most part) for me to take my focus off the leukemia and the treatment. Talking at the long-term follow-up course brought up lots of different issues and possible problems I could have in the future, either related to GVHD, some sort of medicine or a long-term effect of the treatment itself. It’s scary to wonder what the future holds, and I will have lots more time to ponder this once I’m home. Talking about the details sometimes makes me worry more, but I know there’s nothing more I can do to be a better patient. When I get like this (I can’t remember if I told you this before, but I’m sure I probably did…I’ve said almost everything on here!!), I make myself think of the worst-case scenario, which would be death. Well, I have no say as to when I die, and there’s nothing I can do to change what the future holds, so I force myself to think about it, and then I tell myself that it is what it is. Day to day is the only way to do it, so with my health in mind, I will be vigilant of any changes in my body and I will keep walking my path. I’m excited to see where it leads!

Tomorrow I have my doctor’s appointment, so I will probably have more to share with you then. I have quite the list of questions to ask!! Hope everyone is doing well. And when I wrote “parting blog” at the top of this post, I mean “parting from Seattle”. I will probably keep writing once I’m home because I like doing it, but it won’t be as exciting!! I think I need to tour DC, my own city, that I know very little about!

Good night from a very rainy Seattle!

Love,

Julie

Hey there everyone,

I thought I’d give you a couple days to let you catch up. Plus, I’ve been more tired so I haven’t kept up every day. For a while, those steroids were really helpful!! I was complaining the other day about not having energy, but Ronnie pointed out that it’s better to have my chubby cheeks go away and work on building up my energy than have false energy and my steroid moon face. It’s always good to have someone point out the good aspect of a situation!

My dad left this morning, so it’s just my mom and I from here on out. It’s very quiet and very dark ’cause we took all the Christmas stuff down tonight. That’s the worst part, don’t you think? My mom did most of it, but she agrees—it’s a little bare in here now. Plus we got lots of boxes today to mail most of our stuff home, so those are sitting in the family room….definitely a weird feeling. We have lots of work to do before next Friday! Little by little, we’ll mail our boxes and give stuff away. In fact, I left my two hula hoops down at the “donation cart” in the lobby of the Pete Gross House. Hopefully someone will enjoy those!! When I left them down there, along with a couple other things, a family was getting into the elevator; it was their first day here. They were smiling at the hula hoops and asked, “You’re done with the hula hoops, huh?!” I can’t forget our first days here and how happy we were to meet other neighbors. By the way, I think the hula hoops do their job even when you’re not hooping…just looking at them can make you smile.

So, let’s see…what do I have to share with you? Yesterday, my mom, dad and I went to the Washington Park Arboretum. It had snowed the night before so there was a little bit on the ground. My dad and I walked through the winter garden where there were still lots of blooming trees/flowers. I hope you enjoy the pictures!!

My appointment with my team was postponed to Thursday, so I’ll have more updates then. Today they did a blood draw and a chest x-ray, just part of my normal schedule. I don’t know if it’s quite hit me that I’m leaving next week. I’m really going to miss the people I’ve met here, the experiences I’ve had, and the city that has come to feel like my own.

I’ll be back, Seattle, you can count on that!!! (not for medical stuff though, unless it’s a check-up—I am 100% Laura, and I can feel her cells working hard).

Hope everyone is doing well!!

Lots of love,

Julie

Hello from some sleepy “Seattleites”! Guess what?! It’s snowing!! It looks beautiful out there, and I know my dad’s enjoying it!! He’s half watching “Frasier”, half staring outside at the snow. Laura leaves tonight, so hopefully there’s no problem with her flight. I’m going to miss her, but again, I know I’ll be home in two weeks. We had a wonderful couple of weeks, and yesterday we were able to go to Wolf Haven, which was my original idea of an activity to do on her birthday (but they were closed due to snow—they had 18 inches up there).

I included a huge number of pictures of the wolves (some taken by yours truly, some by my dad and some by Laura)…don’t be overwhelmed, but there are some great pics in there!!! On our way there, we stopped by “Tully’s” to pick up some coffee (Seattle has taught us that it is better to travel with coffee than without), we passed both Tacoma and Olympia, and we ended up in Tenino, WA.

It was an amazing morning. Apparently the wolves hadn’t seen many people because Wolf Haven was closed to the public for a couple weeks due to the weather, and they came right up to the front of the enclosures to greet us. We even got to hear them howl!!! Pretty cool, huh? We also saw them eat. I even adopted a wolf (well, technically, my mom adopted her for me). Her name is Ladyhawk…here, check her out: http://www.wolfhaven.org/our_wolves/ladyhawk.php — what a cutie, huh? She reminded me of Jameson, wanting to play all the time, and loving the attention of all of us on the tour (when I say “all of us”, there were only two families, including ours, that braved the snow to be there!!).

It was pretty crazy, because when we got home, there was a message on our machine from someone trying to reach a man who breeds wolf mixes. He bought a pup from him years ago, and he’s interested in getting another one….what are the chances he would accidentally call our number and leave that message on a day that we spent watching wolves?!! Weird, huh?

Today was a good day too. I woke up late, ate some breakfast (still enjoying your blueberry muffins, Katie!), and my dad, Laura and I went to Greenlake Park with Hollie and Kona. It started snowing halfway around the lake, and it was definitely cold, but it was good to be out. Halfway around, we got some hot chocolate from a stand…never has hot chocolate tasted so good! It was almost three miles around, so it was good exercise, although I admit, I’m pretty sore now…my whole body feels a bit bruised, and I think it’s probably from the steroids because they can make your joints sore. I also have a headache, and I’m not sure if it’s from having a low blood count or the medications.

Anyhoooo, all in all I’m good. I’m feeling more tired, so I’m worried about going back to that fatigue feeling I had before the steroids…remember, the magnet feeling? I’m not that tired yet, but I’m just worried, I guess. I don’t want to feel that tired again. I took naps both yesterday and today, which I haven’t done in a while.

I’m not too worried about it, just disappointed in having a lower energy level. I meet with my team on Tuesday, and I’ll be able to ask all the questions I want.

OK, I’m off! Laura’s getting ready to leave soon.

Hope everyone is doing well!!

Love,

Julie

Hi there, everyone! Are you out partying on a Friday night? We’re home after a nice day, my mom and dad just went to bed, and Laura and I are watching “Frasier”, still basking in the glow of the Christmas lights. It’s so clear tonight, and the skyline is beautiful, as always.

I have lots of medical news to share with you tonight. I picked up my schedule for next week, and it felt so good to see “departure” written everywhere, as in “departure” or “discharge” clinic…pretty exciting, huh? Now let’s see…where do I begin? Well, I met with my dietician, and although she didn’t have too much good news for me, she’s not very worried about it. It seems the Prednisone does much more to your body than give you a puffy face! In the bone density scan yesterday, they detected some osteopenia in my spine and some osteoporosis in my hips. I’ve been taking calcium and Vitamin D for several months now, but they are going to recheck my Vit. D level and we’ll go from there. From what I understand, basically, my bones aren’t as dense or strong as they used to be, but there’s no pain with it. I guess bones become less dense with age anyway, which can make you more prone to breaks, but this does not seem to be anything serious for me…still, I’d rather not have it!!!

She also told me my cholesterol was high, also from the steroids. Total cholesterol should be lower than 200 mg/dL (milligrams per deciliter), and mine is 278 right now (it was 132 in September). Triglycerides should be less than 150 mg/dL nd mine are 252 (they were 93 in September). She gave me a list of foods that are lower in cholesterol. i doubt they’ll put me on any medication because things should get back to normal once my steroids are completely tapered. Also, I’ll get into my regular eating routine once I get home. The last piece of bad news (well, I consider it bad news, not that I was surprised by it) she had was that I’m about 15 pounds over the weight I was when I got here. In August, I weighed 126 pounds, which is my normal weight. Today I weighed in at 141.5. I realize the Prednisone results in some weight gain and an increased appetite, but I had promised myself that I wouldn’t eat a lot because I already knew that Prednisone could make you feel hungry. If I know I’ve already eaten, then there’s no need to eat more! Makes sense, right? But then Christmas happened…with lots of delicious food my mom made, yuuuummy cookies, candy, bread, restaurant outings, hot cocoa, Doritoes (Doritoes, I have enjoyed you, but you are not allowed in the house in Virginia!).

Anywayyy, I guess being 15 pounds over my typical weight is NOT a serious problem to have, but it’s all part of the body image, and how it can change during treatment. It’s just frustrating, that’s all. As I wrote last night, I give myself time to feel sorry for myself when I look in the mirror, and then I try to forget about it….and then I blog on and on about it so you can know exactly what I’m thinking! Lucky you.

After leaving my nutritionist, I met my dad for a chowder down at Duke’s (apparently it’s the best chowdah in town—I believe I put pics up of it earlier…it’s just down the hill from the clinic). It was deeeeeeelish! Then we went back to the clinic to have my pulmonary function test done, and my dad sat in the room and watched. He got some pics, as you can see! Everything went well, and I’m within the normal range which is good. I’m not as good as I probably should be for my age, but my blood count is still a little low (my hematocrit is 27), and obviously I haven’t been doing any crazy exercising! It’s a cool test that combines different ways of measuring the volume in your lungs, and “how well they move oxygen into the blood” (stole that from a medical site ).

My mom took Katie to the airport this afternoon, but it was easier to say goodbye knowing that I’d see her in only two weeks!!!! Afterwards, Laura and my mom went and saw “Marley and Me”. They loved it. Maybe I’ll go see it when I go home…the book was great, and I highly recommend it if you haven’t read it yet.

My dad and I couldn’t make it in time, and we wanted to walk to Volunteer Park anyway, so we went our own way. It was a beautiful afternoon/evening, but it was chilly!! We never made it to the park because it started to get dark, but we walked through a beautiful neighborhood on Capitol Hill. Then we decided to call my mom and Laura and have them pick us up while we enjoyed a hot cocoa at Starbucks.

We ate leftover pork and sauerkraut for dinner (mmmmmmmmmmm……..). Tomorrow we’re headed to Wolf Haven International, about an hour and a half away. Check it out: http://www.wolfhaven.org/. I’ll get some photos for you!!

I hope everyone has a wonderful weekend!

Lots of love from Seattle,

Julie

HAPPY NEW YEAR’S DAY, everyone! Hope your evening and day were splendid and happy, and that you too are looking forward to the months ahead.

I thought this was kind of a cute article, especially the part about “Auld Lang Syne”…I’ve always been a mumbler when it comes to singing along to that song….”Should auld/old? acquaintance be forgot and mmm..mmmm..mmmm…..mmmmmm….mmmmmm…Should…” and on and on. It’s one of those songs that makes you a little emotional even though you can’t quite understand it. Perhaps it’s the circumstances of it all: out with the old, in with the new; gathering with friends and family, and the message of the song itself which (according to the article) is about old friends reuiniting. Isn’t that the greatest feeling? Getting in touch with an old friend? Anyway, here’s the article–some sarcasm, some funny stuff, I enjoyed it so I wanted to pass it along: http://www.nationalledger.com/artman/publish/article_272624370.shtml .

We woke up this am and relaxed a bit (I didn’t have any appointments today)–you know, drinking coffee, eating pumpkin bread, sitting around together (which is comforting, even if we’re all focused on something different). Laura fixed my hair and Katie, my dad and I headed out to the Pacific Science Center to see the Lucy exhibition. Ronnie, wasn’t it Lucy we learned about with the skull project in Mr. Hill’s class? Anyway, we were all excited about it, but when we arrived, it was full!! I think every family in Seattle thought New Year’s Day was THE day to educate their child about science so they flooded the place! Needless to say, we decided it wasn’t a place for me to be hanging out. Although it was quite chilly out, we wandered around down by the Space Needle, and walked back home, taking in everything we could along the way. I’ve ridden in the car along those streets so often, but they’re not part of “Julie and Carol’s Way”, so you miss little things here and there. I think all in all, my dad and I (he walked “Julie and Carol’s Way” with me earlier in the day) walked about 4 or 4.5 miles. Not bad, huh? I love getting out there and walking, and it’s a good thing ’cause I’ve gained about 10 pounds or so in the past couple weeks.

Although that worries me, I feel like things (just like you said tonight, Lori) will naturally go back to order once we get home. I won’t be going out to eat as often or eating pumpkin bread every day, a hot chocolate whenever I have the whim, cookies, candies, chocolates that people have sent (although I’ve enjoyed them!). I see my nutritionist tomorrow, and I can’t wait to see her face when she reads my food journal for this week…which reminds me. I forgot to put in the part about “Pudgy Bunny”, although technically you don’t eat those marshmallows. There are LOTS of pictures immortalizing our game. Mom and Dad refused to play–can you believe it?!!! Katie was the big winner with 8!!!!!!!!! I think I had five or six and Laura had six, I think. I looked up some info about the game in case no one has ever played it…it’s pretty funny, but when I read about it, it said 2 children have died from this game! I certainly understand the possibility for blockage of the airways, but I had no idea! Here’s the info if you want to read about it: http://en.wikipedia.org/wiki/Chubby_Bunny. No one was harmed in tonight’s game and we consider ourselves professionals. If you choose to play this game, do so with adults present. OK, that’s my little warning about THAT!

It’s 12:18 AM and I’m getting sleepy, so I guess I’ll sign off. I hope you all have a wonderful weekend. I guess I don’t have too many deep thoughts to share with you tonight. Katie leaves tomorrow, so I’m sad about that, but knowing I’ll see her in two weeks certainly makes me feel a lot better! Also, Laura and my dad are sticking around for a few more days which is great. I’m still discouraged and disappointed when I look in the mirror a lot of the time, but I’m working hard on convincing myself this is not forever. I will be able to pluck and wax and my cheeks won’t always be puffy. Honestly, I feel like I sound so selfish worrying about this, because I am lucky in so many other ways, but what 31-year-old single girl wants extra hair on her face and cheeks that looks like she’s playing “Pudgy bunny” even when she’s not? Plus, my eyes are looking tired again….maybe it’s the steroid taper. I need to adopt the attitude of one of my neighbors’ caretakers…she said, at least you have eyebrows (she said it in a nice way ), and my nurse complimented my eyelashes. Duh, Julie. Look around the clinic at everyone else. Things could be much worse…that’s where the perspective comes in, and I’m glad for it, but for that moment in front of the mirror when I’m studying every little flaw, I admit I’m a little glad I can shed a couple tears too because I’m pretty sure it just means I’m human.

So I will keep doing what I’m doing, stepping out on the town with a few more facial hairs and the classic steroid moonface, as well as some pounds added to my belly, knowing it’s not for forever, but realizing that at this moment, yes, I do look like a cancer patient. But at least I have my hair!! And I have Laura’s cells! And I have an incredible network of friends and family to get me through this! When you look at it that way, it makes me seem like the luckiest gal in the world.

Enjoy the photos…sending my love from Seattle,

Julie

I just opened up my 2009 calendar to put it up, and found this quote of Henry David Thoreau (I love him):

“Pursue some path, however narrow and crooked, in which you can walk with love and reverence.”

Pretty, simple, something encouraging when you’re starting out a brand new year. 2009, I’m coming! I have my dreams and my strength, and I’m ready for what you have to offer me. In fact, I can’t wait to see what it is!!

No worries…I’m not writing another long one, but I wanted to post the pictures we just took up on the roof. It was actually very touching. Though it was a little cold with some sprinkling rain, the roof was crowded with other residents and their families, and it felt good to be among so many people, especially so many people who truly value the coming of a new year. I took up my hot cocoa, some people had champagne, but we oooed and awwwed over the fireworks together, and it felt like a uniting, warm and cozy experience. It will certainly be something I won’t forget, and a lot more fun than a hot crowded party. Also, we all went up in our pjs and it’s on the roof—what a view we have, huh? I took video also, so we’ll try to get that hooked up later.

Enjoy and Happy New Year!

PS Did anyone else happen to see this: http://www.youtube.com/watch?v=BocpiQ7LZ9k

This guy rode his motorbike OVER the Arc de Triomphe in Vegas and then free-fell (or falled or whatever it would be) five stories with the bike….very cool to see….long, but worth the watch.

One more quote, since you know how much I love them!!

“Life is a succession of moments. To live each one is to succeed”. - Corita Kent

Love AGAIN (don’t worry…I won’t write a third blog today!),

Julie —and technically one was written on 12/31 and the second on 1/1/09, so it’s all good.

Happy New Year, all you east-coasters!! It’s only 10:10 right now, so we still have all the excitement to look forward to. We had a good day today. My mom and Katie picked my dad up this morning at the airport, and Laura and I walked up to SCCA for a couple different appointments. It was a full afternoon, but so far, so good. PLUS, I received a call from Angel Flight West today, and they are arranging reservations for us to fly Alaska Airlines January 16th. It’s so wonderful that different organizations provide this service. It’s free for a patient and his/her caretaker. In addition, the clinic sends a note asking the airlines to let us board last and disembark first, and to be upgraded to a better seat if possible, considering the fact that I’m immunosuppressed.

There are other companies I’ve contacted, and if we have to change our flight, we will. Ideally, we’d love to do Corporate Angel Network because they fly private planes which are obviously more comfy and less packed with sneezing, coughing, sticky people and kids. Only problem is Corporate Angel Network will not know whether we have a flight until a couple days before it leaves! It’s all so complicated, huh? So right now it’s the 16th, but that can change according to our flights and also my treatment. We have to make sure everything is A-OK with me before shipping me back home to VA. In the meantime, we have to clean our apartment, pack everything up and let the manager know when we’ll be leaving so she can contact the next person on the waiting list.

Anywayyyyyy, sorry, that’s boring stuff to read, but that’s what’s going on right now. So let’s now get to New Year’s plans….anyone do anything crazy and exciting? All day, we planned on going up to the roof to see the fireworks over the Space Needle, but they’re dropping off like flies! The couch has already been pulled out into a bed and Katie’s sleeping. My dad went to bed a while ago, my mom’s yawning an awful lot, and Laura’s getting a little quieter. Hmmm….well, I don’t care!! I’m making me some hot cocoa and going up to the roof alone!

As far as resolutions, hmmmm…any good ones out there? Obviously mine is to get healthy and back in shape (slowly but surely) and to organize photos that go back to 1995!!! As for hopes for this year, my hope is that we are all healthy and we have a happy year full of memories like those on this blog…and just think! Those pics full of laughter, smiles, hula hoops, friends and family were taken during a very challenging year.

So 2009 is a fresh slate, clean and shiny and ready for new memories and lots of laughs!!

Cheers to you all!

Love,

Julie