November, 2008

...now browsing by month

 

I Just Can’t Get Enough Writing Done!!!

Sunday, November 30th, 2008

Hi. It’s Julie. I’m listening. hahahahaha I think we’re watching too much “Frasier” out here!!!!

I’m sorry it’s over your holiday weekend, but I guess when I feel like “talking”, I feel like “talking”!! :) Anyway, my day started off a little difficult, but it turned into a wonderful one.

I woke up this morning from a nightmare. I’ve had lots of nightmares since the Prednisone, but most of the time I don’t remember much about them. This morning around 7, I woke up crying. It was the strangest feeling. I dreamt that the leukemia came back. Of course, this thought lingers in my mind often, but it never struck me like this before. In the nightmare, I was half in home/half in Seattle (you know how that dream stuff works!), my nurse and some docs in Seattle were there, my dogs were there and my family, and I looked at all of them and asked “Well, what’s wrong? Why do you all look so down? What is it? I thought I was in remission and doing well?!” The doctors finally answered, “it’s back” and they gazed down at their shoes. It was just so real, this nightmare, not that I think there is anything real in it!! In fact, as I’ve said, I feel quite clearly the other way that Laura’s cells were what I needed for a cure.

But I wanted to share the dream with you. I’ve never woken up crying before, and it was certainly off-putting, but of course my mom was awake at 7 AM and we talked a little bit, and I went back to sleep. I know now the only way to look at life is you either live it or you don’t. No matter how much I have left, I plan on enjoying it. I was just a little shocked to have these feelings during the holidays when I was feeling so good!

And the rest of the day made up for the strange morning. Laura and my mom woke me with Starbucks hot chocolate, a package, some cards, and smiles. I spent the early afternoon catching up with friends and family. Whenever I feel sad, I’ve found that reaching out makes me feel stronger and happier, whether those I contact are home or not…knowing you all are there makes it all better!!

Afterwards, I got ready and spritzed myself with my favorite perfume (you’re not allowed to wear any at the clinic, so I enjoy feeling myself on my days off), and off we went to a cool shop my mom and I found in Belleview. We got some Christmas stuff, everyone!!!!!!!!! The best of all (at least Laura and Mom’s favorite) is “the kissing ball”….I’ll take a pic of it later, but it’s basically a ball of Christmas ornaments with some ribbon and garland twirled in. The lady at Pier 1 saw me looking at it, and for whatever reason she said “It’s called a kissing ball, but don’t worry….no one really has to even know that’s what it is”. I was like, “Um, OK. Thanks.” What’s that supposed to mean? I think maybe “No one’s gonna want to be kissing you, so it might not work in the typical way!” haha Cracked me up….then, as I left the store, she yelled “And why don’t you shave while you’re at it!” hahahahahaha No she didn’t say that. hahahaha It would have been funny though. :)

Although Mom’s Christmas shopping attitude could have been slightly improved :), we had a great time!!! I’m teasing, Mom….you did very well!!

On the way home, Laura noticed one of the many cranes all decorated in Christmas lights with a tree on the end!! Remember, Seattle is the city of cranes!!!

Enjoy the pics…some are from last weekend, some from today. Lori and Tim come in tomorrow, so we’re looking forward to hanging out with them! Maybe before they leave, we’ll have this place all decorated for Christmas!

Lots of love from Seattle,

Julie (and Laura and Mom)

How’s it goin’?!!

Saturday, November 29th, 2008

A little rainy, but a beautiful Friday or “shrimp night” as we refer to the Friday after Thanksgiving in the Matthews/Porter/Snow/Mergl/Flack/Tiso families!

The celebration has grown over the years (since 1978, I believe….that was the first year of Thanksgiving at our house anyway). Everyone came up to our house because my dad had fallen off a ladder in August of ‘78, he had just gotten out of a back brace, had a pin put in his arm after removing the head of the radius…given the situation, everyone wanted to come to cheer him up. Either that first or second year, Aunt Ellie and Uncle Jim took it upon themselves to bring some fresh shrimp from the coast of Georgia to share with everyone the Friday after Thanksgiving. We started inviting our friends, eventually boyfriends/girlfriends, fiances, husbands/wives, children….boy did that list grow!!! Everyone talked about shrimp night…all year long! I’m talking the stuff of legends. There was lots of eating, dancing, drinking, laughing, singing, fireworks….and there will be more!!!

So again today was a relatively quiet day, but I wanted to share some more pics with you. You’re gonna have lots of work to catch up on before actually working on Monday morning!!! hahahaha We enjoyed a nice brisk walk, some yummy pumpkin bread from a delicious bakery, Starbucks, lots of leftovers, and I hit the jackpot when I noticed all the Christmas activities and lightings were listed in the paper today! I rarely read the paper….glad I looked today!

We also went to the clinic this morning to have my blood drawn, and I met with some pharmacy specialists to help contact prescription companies that may help with the cost of certain high co-pays. I’m also pretty proud of myself because I finished my application for Social Security Disability……talk about overwhelming!!!!! Everyone I spoke with was very helpful, and they told me I did a wonderful job filling out the on-line portion, so that feels like a big weight off my shoulders. It’s so hard to go through all the financial assistance available out there, but this week I really found some helpful advisers who made the process much easier….plus those steroids are helping me out too!!!

We also watched some great Christmas stories today—have I told you how much I love the holidays?!

In other news, the shaving is going well (I knew you wanted to know). I’m trying to be all spa-like about it, and make sure I pamper my face with warm, soothing washcloths, lots of lotion, and breaks in between pluckings (as in a day or two). I shaved my legs (first go-round!) for the first time in a while, and I just feel so good! I still have to give some of the stubborn face hairs time to grow in before I can pluck ‘em, but I have faith I will again have my eyebrows, lips and cheeks back. :) Wow, that was a whole paragraph on shaving–now you know all the secrets, or what I think to be the secrets to successful shaving post-transplant. :)

Yah, stupid stuff, I know, but it’s good to occupy my mind in many ways, don’t you agree?!!

I hope you enjoy the photos…we were especially excited to see the Christmas tree atop the Space Needle!!!!

Love from Seattle,

Julie

More pictures!!!!!!! :) I’m outta control here!

Thursday, November 27th, 2008

Thought I’d share some more photos with you all. You sick of ‘em yet?

I’ve written enough in the past few days to keep you occupied…you’ll be backlogged by the end of your holiday! :) I just wanted to let everyone know that we had a special Thanksgiving out here, and we gave thanks for you, health and the beauty each day offers.

Enjoy the photos!

Love from Seattle,

Julie

HAPPY THANKSGIVING!!!!!

Thursday, November 27th, 2008

Looking forward to turkey with all the dressings?

It’s almost time!! Also, before I forget, today (for me anyway…I still have a couple hours) is DAY 50 post-transplant!!!  So I guess that can make tomorrow the “over-the-hump” day for my hundred day schedule.  A very special day indeed, but I don’t think I’ll wax thankful (does that even make sense?! It should…you know, people ‘wax nostalgic’ or whatever it is). Anyway, I know you all know what you mean to me and to my family, so be assured that all over the country tomorrow…in VA, PA, and WA, we Matthews will be quite thankful. I wrote previously about how Thanksgiving is our biggest holiday, so obviously this year will be very different than years past, but we are thankful to have the opportunity to know and love all of you. No matter what circumstances you face, it’s those you have behind you who give color to each experience, and you all sure know how to brighten up any situation!!!

So instead of dragging myself to bed after a night of welcomes, laughs, hugs, kisses, and yummy barbeque back in Virginia, I’m sitting in Seattle, typing by candlelight, and looking out over the skyline. You know what? I’m perfectly happy with that, because it’s what I need to be doing right now. I’m looking forward to some of my favorite dishes tomorrow, a nice walk, Laura coming home from the hotel, and maybe some football on the TV in the background or maybe some cheesy Lifetime.

We miss Mary and Yo, but we’ve met a few more couples this week, some newcomers. This morning, my mom happened to be leaving early, before the shuttles ran, and took a young couple up to the clinic to have a procedure done. Later this evening, we ran into someone in the hall who was trying to get a premade turkey dinner to some of his friends who were delayed at the center. We offered to keep the food for them until later. Well, that turned into a bit of an adventure. Before running an errand (ie taking Laura food :) ), I tried to find their room to put a note on it so they knew we would be back)…well, we couldn’t find the room!! Finally, after dinner, when we still hadn’t heard anything from them, we took the elevator downstairs (me in my pink fuzzy pajamas, dog slippers and fluids backpack, and my mom dressed much more appropriately). We walked around a little and STILL couldn’t find it, so we decided to go back up to the room and wait. Well, a couple walked off the elevator and somehow, between a mess of words spoken at once, we discovered they were awaiting the delicious dinner we had upstairs in our room. It turns out the only way you can access their place is actually from outside the building….They were very nice also, so I’m hoping the dinner their friend sent will help make Thanksgiving special. And I’m glad they were able to get it!!!!!

Not much else to say. I’m ‘gonna try to head to bed soon, but my mind’s not quite ready for sleep…that’s when the Prednisone gets annoying! I’ll try and read or something.

Enjoy your day tomorrow, eat lots, and remember that I am thankful for every one of you. Also, I’ll be home in 50 days so start gettin’ excited!!!!!!!!

Love from Seattle,

Julie

PS I added a little more to my tab/page “SCCA Schedule” if you want to check it out.
Enjoy the pics!!!

Some more holiday images! :)

Wednesday, November 26th, 2008

Hi there! Here I am with my Prednisone being all kinds of efficient over here in Seattle. :) Although they did tell me today that they are starting to wean me off the Prednisone…I had no idea it took so long! I’m on 60 mg now, and it will take until mid-January to taper the medicine. But think good thoughts….no more GVHD, no more steroids, no more nothin’! :) Just boring days…that hopefully I’ll be able to fill with fun once my counts really come up!!

I’ve gotten a little further in the shaving area—little by little! I no longer have a unibrow, and I’m just taking it day by day…gradually my face looks a little more familiar to me. :) Next week I plan on asking whether I can start using my eye creams and makeup!! WOOHOO!!!! Isn’t that exciting? The thought of makeup makes me feel great! Just a little pick-me-up to help my self-esteem, you know.

In verrrry good and much more interesting news, I got the cytogenetics results from my last bone marrow, and there are no abnormalities!!!!!! Well, actually, the nurse explained to my mom that when I read the paper, I would see something about a gene abnormality, specifically: “One cell contained a translocation between the long arm of chromosome X and 2. Fifteen additional cells were screened for this abnormality but it was not observed again. A single-cell abnormality is not considered clonal in nature and may represent either a cultural artifact or a covert clone. It will be followed in future studies.” My nurse knows how I notice all the details, and she and the doctors wanted me to know that it basically meant nothing. The results are good and my health looks great!!!! In another part of that same paper, it referred to my translocation of 7;21 (chromosomes 7 and 21), the translocation I had with both diagnoses, a very rare one, as I’ve written previously on the blog. Regarding that, it said “THE ABNORMALITIES REPORTED PREVIOUSLY (SEE RELATED CYTOGENETICS) WERE NOT OBSERVED”. Well, woohoo for that! It also said something about the cells wearing little pink hula hoops around them?! Weird…who knew? :) Oh, and it’s always a relief to read the whole “normal female karyotype”…..hahahahaha I mean, I guess you had to be wondering, what with the hair growth and all!!!! hahahaha

Now, let’s review my blood numbers (what the heck, just for some holiday fun!!!). My counts are very high for me right now (but not for the average person), but they are most likely raised at this moment because of the Prednisone. As I wrote earlier, even though the counts are higher, my risk for infection is actually increased. OK, now you’re all set to read about my counts! Here we go!

White Blood Count: 5.16

Hemoglobin: 10.5

Hematocrit: 31%

Platelets: 103,000

Neutrophils: 4.18

And there you have it!! So I will continue to try and stay away from sickos (like Laura :) ) hahaha Laura seems to be feeling a little better, and we’re hoping she can come home (back here to the Pete Gross House) tomorrow or Thursday…be thinking good thoughts!

And one more thought for the road. Today, my nurse said she wished she could clone me ’cause I am THAT cool! hahaha OK, she just meant as a patient because I come with a list of questions and I’m very thorough, and I want to understand what’s going on. I guess, basically, I want to be involved and since ‘05, I learned the importance of being your own advocate. To be honest, I’ve had such wonderful care, it does not seem like I’ve had an incredible amount to advocate for, but nonethelesss I was flattered that she thought I’d be a good person to clone!!!! :) (I mean, of course, I knew that already, but it’s always nice to hear!). :)

Enjoy the Christmas pictures below, and Happy Thanksgiving!!!! Only one and a half days left!

Love from Seattle,

Julie

It’s almost turkey time!!

Monday, November 24th, 2008

Here I am again! :)

I’m just finishing up some delicious beef brisket leftovers, listening to “The Most Relaxing Classical CD Ever” and sending a hello out to everyone from the Pete Gross House. My mom’s talking to Katie and relaxing. We just opened up lots of lovely Thanksgiving cards—it’s so nice to come home to a box-full of mail! Thank you everyone.

I saw some more signs of the holidays while out and about today…wreaths, lights, people all snuggled in warm clothing….OK, that last part doesn’t mean it’s the holidays, but it kinda does, in my definition of “the holidays” anyway. :)

Well, I’ve got several things to share with you. Laura, unfortunately, is not feeling well, so she moved into a hotel yesterday. Think good healing thoughts so she can be back by Thanksgiving!!!! I hate having her so close by, knowing she came out here to see me as well as to participate in a study SCCA is doing in case I were ever to relapse (WHICH I’M NOT, DAMNIT!!! LAURA’S CELLS ARE VERY HAPPY IN MY BODY!!!). They pushed the study from today until next week, but I wish Laura didn’t have to be alone right now, and I know my mom feels the same way. But maybe Laura is relieved! hahahaha just kidding I know she’d rather be here. Anyway, send her all those healing thoughts that work so well!!

It’s day 48 post-transplant, I believe, and steroid-influenced energy or not, I’m happy to have energy. I’m still not quite all there mentally though. :) My mom walked around the corner this morning to see me pour three cups of milk into a blueberry muffin mix! I was proud to be making the mix myself, since I’ve pretty much milked the fetching for all it’s worth. Anyhoo, so I’m “cooking” and my mom sees this enormous amount of milk going into one box of mix and she looked at me and was like “Um, Julie….what the he*@ are you doing?” Now, mind you, I knew it didn’t seem right, but somehow I grabbed the largest liquid measuring cup (4 cups) and the 3/4 c of milk on the box turned into 3 cups of milk!!!!!! hahahahaha We were cracking up about that. My mom tried to fix it, but I haven’t tried the finished product yet. I’m sure you’ll be waiting with baited breath. :)

I was sad to say goodbye to Maya and Momma Nakamura, but it was a wonderful visit. I can’t remember if I told you about the watch they gave me?! It’s very pretty and it has two faces on it, one that reads “Here” and the other “There”….Maya said she figured I could keep it on Seattle and VA for now, and once I’m home, I can set the time for Dublin to help motivate me for my next trip. Thank you sooooooo much!!!!!! I have a feeling that watch will get to travel the world a little bit.

Some more interesting things I’ve discovered about Seattle: you can tour some of the “Deadliest Catch Boats” (from the Discovery Channel?)–some of the boats are right here in Seattle, although I’m not quite sure—isn’t the crab-catching season going on now? I’ll have to research that a bit more. You know me, I’m all about the Internet research. Another interesting tidbit (not about Seattle, but I just discovered it here) is a cool show called “Ninja Warrior”—it’s this cool reality competition, probably on one of the guys’ networks, Spike or something. That show is addictive!!! Now that’s something that would be interesting to see in person!! Check out a preview: http://www.youtube.com/watch?v=lJmCem8qbTE

Also, I watched “Roman Holiday” and “Breakfast at Tiffany’s” for the first time the other week. I liked “Roman Holiday” much better, probably because I liked her character so much more. I have many more Audrey Hepburns to watch though!!

In other goings on here in Seattle, I have decided to depilate (my big word for the day!) in stages. :) I shaved my armpits (yah, definitely tmi) ;) and plucked some eyebrows today!!! There’s still a little rash on my leg, so I figured I’d wait on that a little bit. I am going back later tonight to try and get some more plucking done on my eyebrows and lip (it hurts!!!!–worse than waxing–AND a bone marrow aspirate!)….and little by little, I will have a much girlier face. :) Although I did even notice some hairs on my cheek today—my cheek!!!!!!! C’mon now, people…that’s just not fair. Oh well. It feels good to have these little things bug me, but I’m still happy I can look at the big picture and say, “You know what?!! I’m a little hairier right now and people will just have to deal with my wolfman-like appearance”…..hahahahahahaha Now I am cracking myself up because I’m not that bad!!!

The weather out here is a little chillier, not like home, but it’s got a nice nip to it! When we’ve driven around the city, I’ve noticed that the snow peaks much lower on Mount Rainier now—that will always be an awe-inspiring sight, I don’t care how many times I see it. I always try to find it when we’re out driving or walking anywhere we might get a glimpse…it makes me feel like a little kid!

One thing I found out I won’t be able to see while I’m here (with some newfound energy, I’m doing more research on what to do around Seattle, both for my mom and myself as well as our guests)–I could have gotten some great snapshots for you!—In March they will have the Firefighter Stairclimb at the Columbia Tower here in Seattle…it’s worth it to watch the 2:30 spot about the 2008 climb: http://www.youtube.com/watch?v=79I3iJQi8M0&feature=related. I wish I could witness all the excitement from the outside, and to help cheer them on! Maybe someday I’ll pay a visit to Seattle in March just to watch (obviously). Another spot I watched said that their gear weighs about 40 lbs, so just imagine packing all that on and THEN climbing the stairs!! Actually, if you get a sec, you should check out this other link because it shows them doing a practice (a different group, from somewhere in Oregon, I believe), and they also explain the climb a little bit: http://www.youtube.com/watch?v=I0RgahfuyUM&feature=related. I knew they did this climb because we visited the tower back in May when we came to Seattle for vacation. Apparently firefighters train and come from all over, raising money along the way for The Leukemia and Lymphoma Society…pretty darn cool, don’t you think?!

Let’s end all warm and fuzzy, ’cause you know how I like that. :) We received a beautiful Thanksgiving note from Katie today, and she made a comment on the situation of the holidays this year that I thought was so simple and elegant that I had to share it with you: “Despite the distance, this will be one of my most memorable Thanksgivings because I think it is the first time I’ve understood what it means to be truly thankful”. Now, if you know about our historic Thanksgivings and “shrimp nights”, then you know just how much Katie’s statement means. Of course we’d love to have all the cousins, new spouses, second cousins, dogs, laughs, love, piano playing, singing (especially Irish drinking songs), shopping, and chatting into the wee hours for many more Thanksgivings to come, but being separated makes us reach out more often, and we know there will be future Thanksgivings. When they come, we will be thankful and we will celebrate. I can’t wait!

Finally, given my increased energy and the food-inspired holidays, I’m getting closer to starting my project of creating a good recipe box for myself, with recipes I’ve always wanted to copy from my mom, my aunts, Tracie, Laura, Katie, and many, many more! In the meantime, I’m sure my mom, Laura and I will make many of our own memories discussing the different foods, who originally made them and what tricks we need to use that aren’t noted on the cards (Mom, you’re famous for this!!!! :)—-what?!! sugar in waffles?!!! hahahahaha)

There goes another long one. Hope you’re all doing well, and you’re planning this week’s eating strategy accordingly so you can fit in all the Thanksgiving goodies.

Love from Seattle,
Julie

And here are a few more pics!!

Haaapppy Holidays!!!!

Saturday, November 22nd, 2008

So, the holiday season is upon us, and I’m loving it! I love riding around town, looking at the decorations (yes, even though it’s not Thanksgiving yet, Katie…and yes, I have started listening to Christmas music already!).

OK, it’s now Saturday afternoon, and I just put up some pics for you to enjoy. My mom and I are having a wonderful time with Maya and her mom, and Laura got in last night too! We plan on going to “Joey’s” for an early dinner, and I’m really looking forward to all the company, and of course the good eats. Maybe we’ll get in some more “Blockus” too!! That is an awesome game, if you haven’t yet had the chance to play. I think my mom and I need to work on our trash talk though, because Maya insists it’s a very integral part of playing. We’re just too sweet….we would never do such a thing!! :) hahahaha

My mom and I both agree that my energy is supersized right now, so I feel almost normal. I don’t know if it’s the steroids doing their thing (they are getting rid of the rash too which is good!), or if it’s maybe a combo of the steroids (prednisone) and the fact that I am indeed getting stronger. When I walk, my ankles don’t feel like they wobble as much, and I don’t necessarily want to be sitting on the couch or my bed….imagine that!!! I keep reminding myself that I am still a patient, and prednisone makes my blood levels seem higher than they are, when they really actually put me more prone to infection. I am excited, worried and triumphant in one breath. Excited to be feeling well, excited for the holidays, coming home, my future…worried because the nagging thought “What if it comes back” will forever be there…and triumphant because I feel in my heart that I have won. With Laura’s help and your support, I really and honestly feel that. I feel almost ready to take on all the challenges that come with being healthy again–finding a job, organizing my life, being there for others. At other times, as I wrote the other day, I become overwhelmed by that thought, but in this very moment, I’m looking out at a beautiful church sitting up on Capitol Hill behind the Seattle Cancer Care Alliance, admiring the late rays making it the brightest building in view right now…I’m looking forward to spending time with my mom, Laura, Maya, Momma Nakamura, and I’m happy.

Holidays always help to get me in the right frame of mind too…I know, they can be stressful too, but I’m not one to complain too much when the music and ornaments start appearing in stores just after Halloween…bring on the joyousness, I say!! You would be amazed how many little decorations and quiet touches you notice at the clinic or here in the Pete Gross House, things to make the patients and their families smile. So it really is the little things in life, huh?

Love and an early Merry Christmas (oops and Happy Thanksgiving!) from Seattle

Enjoy the photos!!!

Julie

Hola!

Thursday, November 20th, 2008

Happy Wednesday, everyone!!

So it’s around 6:15 PM Pacific time, and I’m sitting here on the couch, doin’ a lil bloggin’ and eagerly awaiting my show, “Wheel of Fortune”…unfortunately they have not yet put my wheel watcher’s id up there yet, so I haven’t won anything, but I’m telling ya….if you get my mom and I up there, we would be amaaaaaazing!!!

Remember how I used to do a little dancin’ while getting ready for my day? Well, I would like to announce that the dancing has begun again, and I think it is quite a good sign! I also noticed that my ankles feel a lot stronger when I walk. Don’t get me wrong, I’m not doing miles, and I still have that magnet/couch/bed thing going on, but I’m feeling good. My rash is a lot better, my eyes are less puffy, and was that a flash of my old self I saw in the mirror there? There are a couple annoying things I’ll just go ahead and get off my chest. TMI, perhaps, but annoying nonetheless. So usually, I pluck or wax my eyebrows and my upper lip (even though everyone swears to me there’s nothing there—once you get it in your head that you have hair on your face, you’ve got to have it removed!!) Given my platelets, I was not able to pluck or wax, so I innocently grabbed a nose-hair clipper to shave those areas….word to the wise, DO NOT DO THAT!!! Especially if you’re taking Cyclosporin (the GVHD drug)…according to my nurse, it makes you furry. EWWWWW!!! So now I have little stubbles all over my eyebrows (that I try to hide with my glasses), some on my lip and —-this is the worst—-even some on my chin!!!! She told me the best thing to do is wait because it won’t last forever, and pretty soon I’ll be able to pluck or wax. Now I know this seems like a little bitty problem compared to other things I should be worrying about right now, but I still firmly believe that something good should happen when you get cancer…like instantly your skin is beautifully clear, your hair is thick and gorgeous, and you’re a model or something. Seems fair, right?

Our favorite neighbors, Mary and Yo, left today to go back home to Florida, and we will really miss them! It was always a brighter day if we ran into them either at the clinic, here at the apartments or anywhere in between. We miss you two, but I hope you’re happy and safe and getting some rest in your own place. We will definitely be in touch!!

To be honest, I haven’t gotten the full-blown homesick effect yet, mostly because I hear from everyone so often, and so many have made the trip out here to visit. I just take it day by day and somehow we get to day 43 post-transplant—yup, 43! Can you believe it? In fact, I was thinking today, in some ways, I will be sad to go home. Let me see if I can explain why….when I’m here, I feel like I’m at least a part of the city even though I may be looking out at it from a car/apartment/clinic window lots of the time. Something is always going on, I have lots to watch, and I don’t have to work. :) Hmm…that didn’t come out the way I wanted it to. In January, I will be ecstatic to head back to VA and back to my own home, but then the old routine kind of rears its ugly head again….we have to drive further to get to the hospital or doctor’s office, I will be mostly stuck in the house without much contact with others, unless they come out to see me. I will, of course, see the owls though! They better be waiting to greet me! :) The newness and order of our apartment in Seattle will return to the stresses we have connected to everyday life and our home in VA. It’s all just overwhelming. Let alone my job prospects (and when I will be allowed to look for one!) and my facial hair issues. :) hahaha just had to get that last one in there!!! Does any of that make sense?

I guess what it winds down to is that I like being the center of attention, I love the visits, I want people around me, so leaving this world here (and it is like a different world-the SCCA world) makes me nervous. I will figure out a way to get around this ’cause I know I don’t want to stay out here forever!

Anywayyyy, I’m doing well….just sharing my deep thoughts. It’s now 8:30, and my mom and I are watching “Frasier”…I’m looking forward to “Private Practice” later!

Hope everyone is doing well!!

Love from Seattle,

Julie

PS My mom just read this blog, and I thought I better try and clarify my feelings some more. As I’ve said in earlier posts, I can’t wait to come home to see all of you, my little pups and my kitty! I am excited, I’m just a little nervous and overwhelmed at the same time. My only job is to get well over here, but once I’m home, all the usual stresses come along with day-to-day life. The schedule will be changed, and well, I guess it’s just a transition. It was hard coming out and getting used to the schedule, and it will be hard going back home to readjust. I’ll try to come up with better wording for my next post. :)

Video greeting :)

Wednesday, November 19th, 2008

Hi there everyone!! Katie had the idea to do a little video greeting for everyone to show you my place here in Seattle. Although Katie (and Ronnie, her internet video adviser), did a great job, I still have to laugh because I look and act a bit drugged in it….Don’t worry, I’m all good! They think it’s a combo of the meds, exhaustion in general, and everything I’ve endured. It’s OK if you laugh!!…hey, I did! :) So, here’s the video:  (PS Sorry about my hair situation…I totally flattened it with a hat!!)

And now for some photos. I don’t have too much to add to this post except for the fact that they did confirm that I have a little bit of GVHD (from the results of the skin biopsy). Luckily the rash is doing much better, and I haven’t swollen up much yet with the prednisone…indeed, my eyes are actually getting back to normal! We had lots of appointments today: blood draw, appointment with my team, another with my nutritionist, one with my social worker and to end the day, I had a chest x-ray, which is part of the protocol once you show any signs of GVHD. Everyone agrees I look wonderful though, and it feels good to have them constantly remind me! Today, by the way, is post-transplant day #42!!!!!!!!!! Can you believe it?! It’s going by very quickly, I must say.

I’m looking forward to seeing Maya and her mom later this week, as well as Laura!! It helps so much to have all your support and to have all these visits to look forward to. Plus it’s nice that I only have to go to the clinic twice a week!! What will I do with all this time?!!

Love from Seattle!

OK, here are those pics I promised:

I’m gradually deflating…

Saturday, November 15th, 2008

…in the eye area, that is. So it’s a good thing. :) I still can’t get over the fact that my brows aren’t as they should be because I have to shave them with a nose-hair clipper instead of pluck them or have them waxed…just another fun side effect of treatment!! (I can’t pluck or wax because I don’t yet have enough platelets, and platelets are what clot your blood). Mmmm…now there’s a really pretty image of me with bleeding eyebrows…gross!!!! :)

Anyhoo, it’s Tuesday evening right now, and we’re all doing well. My mom’s watching one more “Frasier” before bed, Katie’s reading, and I’m just attempting to get some info to you via blog! Everyone is doing well, and we LOVED spending the last week with Aunt Barbie and Aunt Nancy, Kristin (and, of course, Katie, who arrived Saturday). Paulina gets here tomorrow, Laura’s coming back, Maya and her mom will be here, Lori and Tim…I just feel so blessed to have such an amazing network. I say it all the time, but I just want to make sure you ALL understand that even though I’m lazy with e-mails and I haven’t written one “thank you” note, I look around and I marvel at my apartment here, and think about how fast the time has gone. I think this is because you are all flooding me with good wishes…generally, I don’t have much time to sit around and feel sorry for myself (just the perfect, healthy amount)!

We’re still out searching for the cutest dogs in Seattle, and we came upon Abby again!! Remember her? The Border Collie who looks exactly like Jameson? We got pictures too, so you can all compare and see for yourselves how similar they are. Unfortunately, you can’t hear Abby’s little whimpers of happiness through the photos, but that too is what my buddy Jamie does!!! It was actually an interesting experience. My mom, Aunt Nancy, Aunt Barbie, Katie and I went for a walk yesterday, and as we crossed the street not too far from my place, there she was! I pointed her out to my mom and my mom wasted no time in getting the owner’s attention (a young, handsome guy, by the way :) ). I don’t even know what stories she was telling him because I concentrated on petting Jamie…er, Abby. Then, from out of nowhere comes this crazy stranger (probably one of my neighbor’s from across the street) and he’s yelling, “Border Collie! Australian Shepherd!” naming the types of dogs the owner had. He walks up to the outside of our awkward huddle and yells a phrase that is not really appropriate to publish on-line. We all try to ignore him, but Katie and I are already stifling giggles. I don’t think my mom and aunts heard, but the guy with the dogs definitely did. Anyway, to sum things up, it made an awkward situation even more awkward, and needless to say, I wouldn’t be surprised if the man with the dogs avoids us from here on out. Oh well, at least we got a picture, right?!! Speaking of dogs, I discovered a wonderful quote in a calendar Aunt Barbie gave me. It reads: “If a dog will not come to you after having looked you in the face, you should go home and examine your conscience” (Woodrow Wilson). At least I know having Laura’s cells didn’t change my “dog whisperer”esque talents with animals. :) hahahaha One look at Jamie and Guinny and you know they’re not trained but they’re full of love, and one day they will be trained!!! In the meantime, I’ll continue to make my neighborhood rounds and visit Carlo (down by the Irish pub–an Australian Shepherd), Abby (and her buddy, I forget his name ’cause he’s not as interested in humans–he seems to want to walk around and check out flowers, trees, sidewalks, buildings), and many other cute little four-leggers we pass during our walks and visits around the city.

Speaking of awkward situations again….do things like this happen to you? We went to a couple restaurants with my aunts and Katie on the off hours, so I didn’t have to be in crowds. One of these places is an old favorite my mom, dad and I have (can it be old if we’ve only been here 2 1/2 months?). Anyway, the waitress comes over and takes our order, and I’m looking up at her, as one generally does, when giving my order…and I noticed, well, let’s just say it, a booger in her nose. Of course I tried to see if it was actually a nose ring but unfortunately, I believe it was the former. I didn’t want to bring it up at the table, but I was constantly aware of that booger all throughout the meal. I was a little distracted because I kept asking myself throughout the meal if I wanted her to come back and have the booger be gone, or did I want it to stay in there so I would be aware of its location at all times. Lori, I’m glad you feel my pain with this…it really was quite the quandary!!! :) It’s fun to be concentrating on silly things like that instead of centering my existence around the clinic and cancer treatment.

Although all is going well there too. I go in tomorrow for a blood-draw at 9:15 AM, and I go back around 2 PM to get a couple units of blood. My nutritionist and my team (doc, PA, nurse) will all come down and visit me while I’m getting the blood. I don’t think it’s anything to worry about, the fact that my platelets and hemoglobin have gone down. Just keep thinking of Andrew’s analogy of a garden. They may all be Laura cells now, but they are not mature. We need to keep giving them the healthy atmosphere they require to grow, and we definitely want to kick out any darn weeds that try to show their ugly faces! I’ve got my boxing gloves, and I’m always ready for a good fight. :)

Well, it’s about 11:20 here now, and I’m getting a little tired, so I’ll be finishing this either tomorrow or soon thereafter. Unfortunately, our internet service has been extremely slow, so we’re waiting for them to have it fixed. I have a bunch of photos to share with you, so hopefully tomorrow we’ll be up and running!!! Good night. I’ll write more tomorrow. Luv, Julie

I lied. It’s now Friday and I’m writing. This is like the blog to beat all blogs in length and photos—-hey! Don’t run off just because there’s a lot—this is important stuff to read about!!! :)

Let’s see…the docs think I may have a manifestation of GVHD (Graft Versus Host Disease), which means my body is fighting Laura’s cells a little bit. It’s not necessarily a bad thing because they say a little Graft Versus Host is good…it means any possible leukemia cells lurking around are fighting with Laura’s cells, and Laura’s are taking over once and for all!!! It’s showing up in the form of a rash, which is worst by my arms, but it’s also on my neck, chest, arms, back legs and feet….definitely itching and annoying, but they put me on prednisone yesterday. I’m visualizing a quick clearing up of the rash, and no further bumps (no pun intended) along the road! They did a skin biopsy yesterday, so we should find out tomorrow what the results were…whether it’s GVHD or another reaction to some medication…I’ll let you know what they say! They also ordered weekly blood cultures and chest x-rays because steroids (the hydrocortisone) can bring down my immune system and make me prone to colds, bactera, etc…since I’m already compromised immune-wise, I have to be extra careful.

Anyhoo, it is what it is and I’ll deal with it day by day. I know, the pics are gross, but I thought you’d like to have an idea of what it looks like…you know, the honest blog and all. :) By the way, which is worse–my arms or Laura’s arm? And speaking of Laura and her gift of life, I got a card the other day you would all love. On the front it read “What I (the ‘you’ was scratched out) did was amazing, beyond generous and kind. I (yes, the ‘you’ was scratched out again) started a miracle. I (’you’ scratched out) gave the gift of life, with a handwritten smiley attached, as well as a few underlines making sure to acknowledge the ‘gift of life’ part). On the inside it read “How can anyone thank me (’you’ scratched out) enough for that?!!” I couldn’t stop lauging. Inside she wrote a beautiful note, but I knew you would all appreciate the card.

Oh, before I forget, here’s a link to Katie’s book (featured in one of the photos below)…check the website out to preview the first few pages (or you can order your own!): http://www.blurb.com/bookstore/detail/398436 Hope you enjoy it!!!!!

Well, this is quiiite the long one, isn’t it?!! It has been a while since I’ve written, and I’ve been a busy girl, so I had a lot to say, so that’s that!

Mom sends her hello from Seattle too! Now I better get off to bed! It’s 11:30 here!!!

Love from Seattle,

Julie