December 11th, 2008

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Good news, Christmas lights and lots of plans!

Thursday, December 11th, 2008

So, how’s everyone doin’? You getting into the holiday spirit?! We’re right in the middle of it here in our apartment….candles in the windows (fake ones :) ), real (yummy-smelling) candles in the kitchen, a gorgeous tree (by default, her name will be “Daphne” because only 2 voted, so majority wins)! My mom thinks you will all be seriously worried about me ’cause I’m naming a Christmas tree, but it’s got character—I feel that it’s merited!!! So unless we get any “write-ins”, “Daphne” it is!!! My mom surprised me with some more ornaments today—all these cute little animals that are made of brushed wood. Oh, and I can’t forget the kissing ball, nightlights, 2 wreaths (one inside and one outside), our table tree with the fat little snowmen AND the lovely red frame with the Xmasy frog inside.

This morning, we (mostly me) relaxed and got some errands (can you do “errands” around the house?!) done. It was nice, because we were all together in this cozy atmosphere, yet we were doing our own thing and actually getting stuff done!! What a good feeling!!! I enjoyed my pumpkin bread and some coffee (I’m never awake in time for coffee!—and, well, to be technical, I had to make my own pot this morning too once I woke up.) :) While my mom and Aunt Bitsy did important errands, I looked into more fun activities in the Seattle area. Later this afternoon, my team asked me about what I had done this past week, and what I planned on doing this week, so I went through a long list. :) They kept saying “Really? Where’s that? What’s that like?”, and they suggested I put a list together in case other patients might want to try some of the activities…so I did! I e-mailed one to Jackie, my nurse, and left one on the volunteer services desk. Just in case you’re interested, the activities I included are: 1)”Bellevue Botanical Gardens” (you’ve already seen pictures of those gorgeous lights!); 2)”Reindeer Festival” (it’s at a nursery and they have real live reindeer—how cool, huh?!!!; 3)”Snowflake Lane and Celebration Lane” (it’s in Bellevue, and they have fake snow, live toy soldiers, music, lights…you get the idea); 4)”Gingerbread Village” (a “spectacular” gingerbread village at a local hotel—different architectural firms contribute)…I wonder if mine will be there (I call them “mine” now because they built “my” building out here!); 5)”Candy Cane Lane” (this sounds supercool also. Apparently it’s like a wonderland, spurred on by a decorating contest the city hosted in 1949. It sounds like it’s one street in a neighborhood); 6)I also wrote about the fact that there are lots of places where boats show off their lights and gave a website……hopefully one of these suggestions can help someone else have a happy holiday out here despite the circumstances. I DEFINITELY plan on hitting all of these—don’t worry, Mom, we’ll do it little by little. :)

When we went to my team visit today (it’s only been once weekly the last several weeks), I asked about my chimerism results for my peripheral blood draw they did December 3rd. Apparently (I can’t remember if I tried to explain this before), this is to ensure that any blood (whether from my marrow or any other part of my body, thus my arm and extremeties), is 100% Laura, and there is no stray Julie running around. AND……..the results are…………………………………………………………………………………………………………………….

I AM FULLY LAURA!!!!!!!!!!

What do you think about that?!!! They said I look great and they were bragging to my new doctor about me before he met us this afternoon (remember that only my nurse stays the same…my PA and physician alter each month). They notice my increased puffiness and hairiness, but assure it will go away after the steroids. Basically, I ask a lot of questions; in fact they probably think I’m crazy. I’ll ask things like “I feel like I smell…is that because there’s more hair around my face so it filters in? Or could it be my sinus issues?” Nobody thought I smelled….thank god! I say “sometimes my back feels kind of hollow or like slight bone pain—usually when I’m sleeping, but nothing bad….maybe 1 on a scale to 10, 1 being the lowest level of discomfort”…”sometimes my neck feels sore on the side and sometimes in the front, but it’s not too bad, I just notice it sometimes.”…”can I go to a Celtic Holiday Concert inside a church?”….and the list goes on. Also, that’s pretty much how I word things. I’m lucky I feel so comfortable to ask them all these questions, whether silly or major, not that I’ve had many major ones…knock on wood. They listen carefully, ask questions, do a check-up, and I leave! By the next week, I have another list waiting. I wonder if just saying everything makes me feel better because it’s off my chest, and I know I’ve told the experts.

And, the BIG question of the day today (that apparently they’d all been waiting for me to ask!) was “When do you think I can go home?” They said that you can usually take day 80 post-transplant (or maybe it’s 84, ’cause I just checked my schedule and that’s my next bone marrow biopsy) plus 14 days after that, and you can go home! I believe those two weeks are filled with the same pre-transplant work-ups so my days will be busier. So basically, I’m looking at about a month!! If anything changes, we will stay on longer, but I’m thinking good thoughts and I know you are too!! Gosh…can you believe it? Time has truly flown by.

As I walk through Seattle these last few weeks, I wonder if leukemia helped me more than it hurt me. Before you think I REALLY did become crazy, just hear (errr, read) me out. Because of my cancer experience, I have the distinct opportunity (especially for someone my age) to hit a “reset” button when life feels out of control…though that button is in the form of the word “leukemia” lurking in the depths of my mind for each and every day to come, my perspective on life will always be altered in a good way. It has also, I don’t want to say “given me a purpose”, but in many ways it has. I can more deeply understand traumatic situations in other people’s live, and I feel I have a lot to share with those who are struggling to handle it. I feel more well-rounded…..very weird, I know.

I guess you also have to remember that I don’t yet have a career. The past 4 years centered mostly around leukemia. When other people talk about their jobs, their children, their fiancés, their homes, sometimes I struggle to be part of the conversation. I’m not saying I’m a dolt!—I’m just saying our paths were different. I’m jealous in some ways, but I’m grateful in many others. Getting rid of cancer has been and is my job, and I work hard at it (thanks to Laura), and I think it was meant to be. Call me crazy. :)

I also analyze my living situation here, and I think part of the nostalgia I’ll have for Seattle is because I never lived in a city before. I never looked out and saw a skyline, or learned the rhythms of a city neighborhood (and its dogs!) :), I never spent enough time to really get to know a city and its neighborhoods and eccentricities. Sooooooo, I thought to myself, “Well, let’s get prepared to possibly feel a little down when returning to VA–1)because my steroids will be tapered and 2)everyone will return to work, and 3)lives will continue as usual. I will have my pups, and friends and family, but I’ll be in the suburbs, and I’m a little worried about cabin fever.”

This is what I decided: I WILL finish all my projects (photo projects, recipe projects, organizing projects), and I will enlist the help of friends (if you’re willing!) because it makes it a lot more fun. I’m glad I know myself well enough to know that what I need is people and projects (and dogs). :)

Anyhoo, enough nostalgia…I still have a month!! I know what I forgot to tell you. My mom told my team how I wrote a note to the architects of the SCCA clinic building and how responsive they were, and I was surprised that the team was surprised. They asked me what it was about the building that made me feel like that, and it made me realize that this building was a totally different experience for them. They walk into the building every day for work so it’s obviously through different glasses. I told them how all other patients love the building as well. I am so glad I decided to send the note and that the architectural firm circulated it.

On a final note (I know, it’s long today!!), I thought I’d share a text with you that I received from Laura today after telling her I was completely her:

“I figured you must be ‘completely me’ since you have so much more energy and seem happy and more generally just a better person…smarter, more creative, I think you get the picture! :)”

Laura, my gift of life!!!! :)

And there you have it. I hope you enjoy the photos…there’ll be more coming!

Lots of love on a great day out in Seattle.

Julie