October, 2008

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Day 0…the countdown begins!

Tuesday, October 7th, 2008

Well, hellllooo there everyone!!

You may now call me JuLaura. :) My radiation went well this morning, especially because I was able to bring in my own CD. Remember when I was in isolation and I wrote about my new favorite song by Joshua Radin? Well, when I got out of isolation, Laura and my mom surprised me with his CD, so I took it in today. Despite the mellow tunes, it helped pump me up for the day ahead.

After radiation, my mom and I had some lunch and went up to visit Laura who was getting some fluids. She looks much better today, although I don’t think she’s 100% yet. Her arm is pretty yucky looking where they infiltrated it, but she’s feeling much better in terms of a headache and nausea.

At 2 PM, I went in to my room for the big transplant!! I got some premeds (Tylenol and Benadryl), and pretty soon the cells arrived…it looked just like a bag of blood.

Everything went smoothly. I also got an iv of magnesium because my level was a little bit low. After we finished, I just walked out and we came home! Pretty cool, huh? It was quite an exciting day, and although I know I may have bad days ahead, I have a good feeling about Laura’s healthy cells. It should take about 18-21 days before her cells start to engraft, so keep those prayers up! My next bone marrow aspirate and biopsy is November 4th, so hopefully with lots of visualization, prayers and good cells, it will show some healthy happy Laura cells.

When we got back from the clinic, I had a snack, talked on the phone a bit, ate some spaghetti, and then I went for a walk with Hollie and Kona. Now I’m getting ready to rest and relax, but I wanted to let you all know I’m doing well, and I’m thinking good thoughts!! Thank you for all your thoughts and well wishes. I can feel ‘em!  Check out Laura’s post below for pictures from today!  Thanks for putting them up, Laura!

Lots of love,
Julie/Laura (I’m a mix now)


Tuesday, October 7th, 2008

Greetings from Seattle! Today is day 0, also known as Julie’s new birthday! :) Enjoy the photos, Julie will post something when she’s feeling up to it. She’s doing well, and resting. Love you, Laura

It’s almost Day 0!!

Tuesday, October 7th, 2008

It’s 10:05 over here in Seattle, and back on the east coast it’s already day 0 for me! Finally, transplant day has arrived!!!!!

Unfortunately, Laura is not feeling well today. She threw up three times, and has a bad headache, both of which they think is due to the growth factor. Also, one of the iv’s infiltrated so her arm is all puffy. I felt pretty guilty when I walked in to see her after getting two units of blood this afternoon. She was sleeping, and she looked pale and vulnerable all hooked up to the apheresis machine. I wrote her a note today to thank her for “the gift of life”, but it turns out I have no idea how to express myself on the matter. I’ll try again here, but I’m sure whatever I write won’t come out as well as I want it to. Sometimes it’s so hard to put feelings into words.

Laura, thank you for giving me the opportunity for a cure to this awful disease. Thank you for making me smile, for growing through the pain of donating, for taking time off of work, for being there whenever I need you…there are so many things, big and small, that you have made easier on the whole family, and I appreciate everything. Man, I’m STILL not doing a good job of translating my feelings…you know how much I love you, and I’m sorry you’re sick because of me. I’m sure once you’re feeling better, you’ll be teasing me and telling me how I wasn’t worth the vomiting or the pain! :) I love you, and I’m excited to get those cells!

Speaking of, this was my last day as myself…tomorrow, I will be filled with Laura cells…crazy to think of, don’t you think? I’m gettin’ sleepy, so I better go to bed! I have to wake up at 3:30 AM to give myself an iv of fluids (before the radiation). I start that other creepy pill tomorrow so think good thoughts about the transplant and the medicine!

Sending lots of love from Seattle,

Julie (starting tomorrow I’ll be JuLaura!) hahaha :)

P.S. Thank you to Ronnie and Laura for the hard work on the hula hoop slideshow…I love it!!!!! This blog is definitely a team effort…who knew it was so time consuming?! Thanks for being my blog mastermind, Ronnie, and Laura and Katie, thank you for all your suggestions and hard work to make it fun. :)

Day minus 2…all systems go! :) (I’m totally stealing that from you, Andrew)

Monday, October 6th, 2008

Two days to go!!! Well, actually, since it’s Sunday night, I guess we technically have a day and a half until Day 0, transplant day. After that, they will start counting Day +1, 2, etc…so each day puts me closer ’til day 100 when, hopefully, I’ll be able to come home!

My mom, Laura and I are sitting here watching some episodes of “The Golden Girls”, one of our favorite shows. Laura has a headache, but she’s hanging in there, my mom is doing well and is chatting with Aunt Bitsy, and I’m feeling well…just a little tired. My counts are pretty much 0 at this point, although I got platelets yesterday so they went all the way up to 40,000! Not normal, but I’m happy with that. I will be getting blood tomorrow because my hemoglobin and hematocrit went down…I want to make sure I’m all pumped up for the transplant!!! I’m getting really excited about Tuesday because that will become like my new birthday (although, as I’ve said before, I’m not giving up Dec. 16th…I’ll just have two birthdays…nothing wrong with that!). October 7th will mark the beginning of my new life, cancer-free, and I am feeling just so positive about everything. I know my feelings change day to day, mostly depending on how I’m feeling physically, but I just feel so lucky.

Lucky to have Laura and her “gift of life”, lucky to have a wonderful family, lucky to have a huge support network, lucky to have the doctors I have, both in Fairfax and out here in Seattle. I still miss everyone I know back in Fairfax–all my nurses and Dr. Kales, but I know I’m getting good treatment here as well. The facility continues to impress us every day, and that’s pretty amazing.

As Kathy pointed out, it seems strange to feel lucky in my situation, but I have so many things to look forward to (visits from friends and family, returning home, finding a career and a date :), starting a family, and traveling all over the world), and I’m just trying to concentrate on the fact that going through all of this now will allow me to live a long, happy life. Plus, it’s not like I have a choice to go through this or not, right? :)

Katie had to leave today, and it was hard to see her go, but she’ll be back in about a month, and I’m really looking forward to it. We didn’t get to do lots of fun activities, but we got to spend time together, and that’s obviously what matters.

I guess I don’t have too much to share with you right now. I’m just sitting here, looking out at the beautiful night skyline of Seattle, relaxing on the couch. Things certainly could be a lot worse, and I will always feel lucky and proud to endure what I have within the past 3 and a half years…knock on wood, of course! I don’t want to jinx myself! It’s kind of weird to be proud for just dealing with a life experience, but I do. I will try to keep focusing on the positives through the next 102 days (yup, the countdown begins!), and I will forever carry with me the experiences I’ve had out here.

Enjoy the pictures below. I started my Cyclosporine yesterday (the scary gray drug), so we documented it for you. :)

P.S. Below, Laura published an entry to include a slide show she put together of our hula hooping this afternoon….we’re pretty awesome hoopers!! I know some may be shocked by the language in the song, but just listen to the beat, and you’ll realize it fits the pics perfectly!!

The Giver & The Getter, Gettin’ Our Hoop On! :) :) :)

Monday, October 6th, 2008

This is Laura again, thought I’d share a little slideshow with you all from earlier this afternoon. This is Julie & I gettin’ our “hoop on”. :) Enjoy…and FYI the music is not appropriate for kids, so those of you watching this within earshot of a little one, you may want to hit “mute”…for the rest of you, enjoy a lil Cypress Hill! :)  Also, make sure you wait until the video’s downloaded completely before watching it…otherwise it’ll freeze up while you’re watching.  Enjoy!!

Even MORE Photos! :) :) :)

Saturday, October 4th, 2008

So, here we are, the Friday before my transplant…3 days and counting, or as Andrew wrote (which sounds even cooler), Day minus 3…all systems go!!! That way sounds much more exciting, and excited I am!! The closer I get to the transplant, the more excited I am to let Laura’s cells take over and get this all behind me. She got two shots today, both Neupogen to increase her white cell count. Sometimes patients experience pain from that because eventually, after 2 shots a day for 5 days, there are so many white cells in the bone marrow, they don’t have anywhere to go, and it can cause bone pain or pressure. I’m hoping Laura won’t be affected by this too much, mostly so she doesn’t give me any crap about it. hahahaha No, seriously, she did really well today, so I hope that it’s not an issue for her. She has and continues to do so much for us…it just doesn’t seem fair to add physical pain to it, does it?

I had my consultation with a radiation oncologist today to talk about the single dose (or “zap”) of total body irradiation (TBI) I will be getting Tuesday morning before the transplant. They will take pictures of me while I’m in there, so I’ll be sure to pass those along to you! It’s all part of the process of getting rid of all my cells so Laura’s can take over fully. When it came time to ask questions, I of course asked the one that I’ve asked every doctor: Will this procedure make me sterile? I knew the answer was probably yes, but I thought maybe a “zap” of TBI just meant a little bit, and it might not rule out the possibility of having children. Unfortunately, his answer was indeed “yes, it is most likely that you will be sterile, if you aren’t already from your previous chemos and other procedures (i.e.radioactive iodine)”. OK, so I expected that, but it doesn’t really mean that it hurts any less each time I hear it. I absolutely want to adopt, but I guess I was still hoping that there was some possibility I would be able to experience pregnancy…I say it that way because if I wrote “to have a child” it doesn’t make much sense, because if I adopt, I do have a child. Do you know what I mean? I just always thought I would be pregnant someday, along with my sisters, sister-in-law, and my friends. I know, I know, meet the guy first, Julie. Don’t worry…I’m not that desperate to have a child! I definitely need a date first! And if anyone knows of any hot, single guys around 30, tell them to wait about a year or so until I’m allowed to go out and do stuff, and then we’ll go from there! hahahahaha :) Anyway, whoever he turns out to be, it will be difficult to tell him that I cannot have children. Ok, that’s enough complaining about that. As always, thanks for reading along as I work these issues out in my head.

After my TBI consultation, I went and started my Fludarabine, the chemo I will receive through Sunday. It’s a relatively mellow chemo, as chemos go, and the infusion itself only takes a half hour! It went well, and afterwards I met with my nurse to talk about any issues. I do have mucositis which she thinks to be in the early stages. My instructions are to rinse at least every 2 hours with salt water, and to keep them updated on any changes. It’s not so bad right now…the most annoying part is that my throat feels tight like it’s closing up a little (but no worries…I can still eat and drink and take all my lovely pills!). My saliva also feels thicker, and they told me to spit out any secretions….disgusting!! Am I supposed to turn into one of those people hawking all over the sidewalk?! I’m walking around the city spitting everywhere, and then I’d have to explain myself, “Oh, don’t worry…it’s only ’cause I’m a cancer patient…that’s all…thick spit, you know”, with a smile so they don’t think I’m just gross. :) hahaha That’d be pretty funny.

Speaking of wanting to hawk something up, I start the Cyclosporine tomorrow…remember, the scary, smelly gray pill I told you about? Think good thoughts as I introduce it to my system! It’s funny…I keep having little conversations with my body like “You’re doing so well…just keep it up! We can do it!”, little pep talks for when the body feels some pangs of weariness. I think it works. And don’t worry, I do it in the privacy of my own bathroom…I don’t walk around the clinic or around Seattle talking to myself! Although no one would think anything of it on the street I live on…the residents of the halfway house across the street are constantly keeping us entertained with their lively conversations, sometimes two-sided, sometimes not!

My Ativan is kicking in so I’m getting sleepy now, but I wanted to let you know about the coolest thing that happened today….Katie came in to visit!!!!! She’s pretty tired because she had a long flight and what with the time difference and all, but it’s so good to see her! And she brought me a book that she wrote just for me! It’s called “Sigep’s Patience” and it’s about my bone marrow and how he’s a nice guy, but a little careless when it comes to caring for himself. Pretty soon Cleo, the cop, shows up to help him do all the things he needs to do to be healthy, and together they help me feel “happier than ever”. It’s wonderfully written and so creative, and I plan on carrying it around with me to all my appointments. I think the doctors and nurses would be very impressed by it. And the detail is wonderful! The book itself is orange (for leukemia), and on the front cover, there’s a cute little circle guy down by Pike’s Place Market, holding an “I love Seattle” poster in one hand and a starbucks cup in the other. Mount Rainier , the Space Needle and evergreens finish off the Seattle scene, but the best part is the clock at Pike’s Place Market is that the little hand is on the 10 and the big hand is on the seven…get it? 10/7, the day of my transplant. Anyway, I can’t do the story justice by trying to describe it to you over the blog so hopefully someday you will get the chance to read it, or you can order yourself a copy from http://www.blurb.com/. I do want to share a pretty Irish prayer she inserted at the beginning: “May God give you…For every storm, a rainbow, For every tear, a smile, For every care, a promise, And a blessing in each trial. For every problem life sends, A faithful friend to share, For every sigh, a sweet song, And an answer for each prayer.” I am fortunate enough that God has given me these things in you, my family and my friends. I can’t wait to get through the storm, and I will fight with all I have to see that damn rainbow again. I feel so strong today…I feel relatively healthy and I ready to move ahead. I know my feelings always waver, depending on how I’m feeling, but I find what I can in each day to bring me joy and peace. And I feel lucky to know how to find that joy and peace, perhaps a lesson I learned from leukemia.

I’m going to update my schedule, if you want to check that out a little…not much is changing, but it gives you the times of when everything is happening, in case you want to check it out.

As I look across the way to the windows of the nice apartments (behind the halfway house), I watch people (not in a creepy “Rear Window” sort of way, but just as in glance–hey, they have their blinds open!) meeting up with friends, getting ready to go out, and I feel jealous and sad, especially after spending half the evening trying to organize my growing number of medicines. I should be doing what they’re doing. I should be going on dates, I should be out there meeting new and interesting people my age, but I’m stuck…for now.

Strangely though, I would never give up the perspective I’ve gained from all of this. I know in my heart that my future is gleaming with possibility, and I can’t wait to find out what other twists and turns life will take me on. It is indeed an adventure, and I will look at each day as such……even if I’m feeling nauseous, layed out on the couch….hey, it’s all part of my experience, right? :) (Just don’t remind me I said this when I actually am nauseous and layed up on the couch, ’cause I’ll probably have a few choice words to share with you!).

I hope you all enjoy your fall weekends–the colors are actually very pretty here!

Love from rainy Seattle

PS Laura took a few more photos that we thought we’d share with you :) (She also wrote the captions for them) Enjoy! :)

Thursday, October 2nd, 2008

Can you believe it’s already Thursday? Here we are, less than a week away from the transplant. I’m feeling good, a little blah, but pretty good. I feel like I have a few mouth sores right now, and my throat feels swollen, one of the side effects of the i131 (it’s called mucositis, which is the “inflammation and ulceration of the mucous membranes lining the digestive tract” (I stole that from Wikipedia). I don’t have any problems swallowing, so hopefully it will stay that way! If anything were to get worse, they would simply put me into the hospital to give me fluids and nutrition there.

Thank you, Laura for your wonderful post! I love all the pictures, even if you did steal the cute little sunflower right out of that garden. :) I’m so glad you and Tiso are here, and I can’t wait to see you tomorrow, Katie! So we’re all watching the vice presidential debate, and it makes me think of the presidential debate last week. I forgot to write this before, but does anyone out there agree with me that John McCain looks and talks like an elderly John Travolta? Just listen to how he talks, and then compare his picture to Travolta’s. I sat there through the debate thinking, “wow, that’s a good makeup job they did”. hahahaha Anyway, am I alone in this thinking?

I’m sorry to report that I have that metallic feeling in my mouth again…I just noticed it this morning when I took a sip of coke…what a disappointment!!!! You know how I feel about coke. :) I only had two appointments today, one for blood draw and the second for a meeting with my nurse to discuss the medication I am and will be taking. It wasn’t quite as scary as the first time around, when I met my pharmacist and tried to absorb a huge amount of information about a ridiculous number of pills. Still, I start that creepy, smelly gray pill, Cyclosporin, on Saturday….remember, the one I thought dissolved in the air, but was informed that it actually just loses its potency. :) Plus I will be given more fluids for my mom and I to give myself at home to make sure I’m hydrated.

So, there’s not too much more to share today…no exciting adventures or jaunts around town. I’m just enjoying everyone’s company. I do have a funny story for you though. Early this morning, my mom and Laura went grocery shopping, and I stayed home to rest and finish up with my iv hydration. When it seemed like it was about time for them to be getting back, there was a knock at the door. I said “I’m coming!”, and then another knock!–well, I figured that it was my mom and Laura, so in my most exasperated voice, I yelled “I’m cominggggg!”. When I got to the door, I looked through the peephole, but I couldn’t see anything because we have a little Halloween decoration on our door. So, figuring it was my mom and Laura, I said in my sweetest and silliest voice, “Whooooo iiiiiis iiiiit?!!!”, and I heard “package delivery”. hahahahahahahaha So now I think the housekeeper/package deliverer (not for our apartment, but for the house in general) must wonder if I have two personalities!!! I was pretty embarrassed and just took the package. I did say “thank you”, but I closed that door on her pretty quickly. I will have to make an extra effort to be friendly and normal when I see her next time. :)

OK, well that’s all I got right now!

Love from Seattle

Enjoy the pics, everyone!

More Photos! :) :) :)

Thursday, October 2nd, 2008

Hello again, it’s Julie’s sister, Laura.  I have some more photos to share with all of you!  The first few are a few extra I took when Julie was still in Isolation, and the rest are from earlier today.  

Julie is doing well. :)  She is Neutropenic right now, so she isn’t too happy about being confined to the indoors, especially when it comes to eating.  She has really been enjoying the many delicious restaurants Seattle has to offer, but she needs to eat in for now while her numbers are low.  

She spent most of the day at the doctor’s office this afternoon, but she was up for a nice walk around the city this evening (photos included) :).  She begins Chemo Friday, to last through the weekend.  It will all be out-patient, so we’ll try to make her as relaxed & comfortable as possible while she receives it.

Overall, all is well…Julie asked me to let you all know that she will post another blog once she’s feeling up to it…”soon” she says :)  And whenever she’s not up to it, I’ll try my best to learn how to navigate through this damn blogging thing.  I have to say, Julie, I have a MUCH greater respect for your previous blogs, I had no idea how tedious this can be!  Whew!  Anyway…enjoy the photos and know that Julie is doing well, staying strong & continues to find reasons to smile. :) :) :)  Much love from Seattle! -Laura