September, 2008 browsing by month


I’m Home!

Tuesday, September 30th, 2008

Hi all, it’s me AGAIN! Just wanted to say that I’m home (we got here around 6 PM or so). Hope you like the pics! One is from the first day of isolation and the others are obviously from today!

Hope you’re having a wonderful week. I meet with my team tomorrow, so I’ll let you know how that goes when I get the chance. My chemo starts at the end of the week….let’s just get through this and MOVE ON to the next part!! I’m ready!

Tuesday, September 30th, 2008

5.9 is the magic number!!!!!!!  I’M OUTTA HERE!!!!!!!!!!  Can’t wait to get back outside.  Although it’s too bad I’m not as hot as I used to be.  :)  hahahah get it?  as in pretty?  Wow, I’m a dork…oh well.  Alright, I’m off to get ready to ship out of this joint.



A New Favorite Song! :)

Tuesday, September 30th, 2008

Mornin’! Actually, it’s 12:10, so I guess technically it’s afternoon. Anyway, I was relaxing, flipping through “Southern Living”, missing Virginia and listening to “Ellen” in the background when this singer came on. Sometimes I’m the last one to hear about a singer, but this guy’s awesome!! Have you heard of Joshua Radin? Go to this website, and the first song that plays automatically is my new fave…it’s so pretty!!

Whatdoyathink? Actually, all of the songs I listened to sound awesome, so I think I’ll be burning myself a little CD as soon as I break outta this hospital. I’m still waiting for them to come and measure my “hotness”, but hopefully I’m goin’ home today!! My nurse thinks maybe they’re waiting until afternoon to take the measurements to insure that I’ll be low enough to leave.

The computer’s about to die so I better go plug it in…I can’t wait ’til I can type on it without plastic on the keys and gloves on my hands!! :) Hope everyone’s doing well. Oh, and one more thing, if you haven’t seen this yet, take a look…pretty lucky dog, I’d say!!

Love ya.

Tuesday, September 30th, 2008

Happy Monday, folks!

It’s almost 5:30 PM, and I just thought I’d write a little somethin’ in the ol’ blog before getting my dinner (mushroom bisque, oyster crackers, rice and jello….mmm!!) :) and flippin’ on the tv. All is well here. I still have nausea fairly frequently, although sometimes it’s hard for me to tell the difference between nausea and being hungry…anyone ever had that problem? No food looks especially good, except for the Italian ice I had this afternoon…they even sent me two!! :) I’ve pretty much kept up with some sort of anti-nausea medication, but last night I did get sick…well, technically this morning. I called my nurse at 2:30 AM and told her I felt nauseous. I walked over to the door so she could put the Ativan into my iv tubing, and literally, as she put it in, I had to grab my little basin that I left out next to my bed (just in case), crouched down on the floor and threw up. Yuuuuummy!! It takes me a while to get going in the morning, because the blah feeling lasts a long time, but eventually I feel well enough to get in the shower and ride the bike a bit.

Now it’s 7:25 and I’m watching my show, “Wheel of Fortune”…no, it didn’t take me two hours to write that last bit…I’m a busy girl, you know! I may be in isolation, but I have to tend to phone calls and e-mail, and well, you know how popular I am, so it takes a while! hahahahahaha :) I didn’t get the answer to the bonus round ’cause they put up a ridiculous clue…it was “place” and the answer was “museum wing”….museum wing? Seriously?!!! They need some new clue maker-uppers, don’t you think?

OK, now it’s 9:40…wow, it’s taking me a long time to write this, huh? I flipped through a couple magazines while listening to the Steelers-Rams game in the background (I find that listening to sports games…except for basketball and soccer…sorry, but I find them boring…always cheers me up. I guess it’s the noise and excitement of the crowd, the comments of the sportscasters…the only thing that would be better would be if 1)I could actually be at the game or 2)I were watching it at home sitting by a nice warm fire).

Anyway, so here we are again, and I don’t have too much to say. I’m just watching some tv, and thinking good thoughts so I can go home tomorrow! I have to be a 7 (I can’t remember what the measurement is called) to leave, and today I was an 11.5 (in terms of radioactivity). Hopefully next time I will be writing you from the comforts of my own “home” at Pete Gross.

Oh, and one last funny comment I forgot to share with you…when Ronnie saw the pictures of Mary and I looking out our “stalls”, he told Laura to remember to “keep her fingers together and her hands flat while feeding me a carrot”….hahahahaha Verrrry funny!

Hope everyone’s doing well. As always, thanks for all that you do to keep me smiling. Love from Seattle

Photos! :) :) :)

Sunday, September 28th, 2008

Greetings from Seattle!  This is Julie’s little sister, Laura.  I took some photos of Julie & her new digs yesterday and thought you’d all enjoy them.  :)  

Saturday, September 27th, 2008

Mornin’, everyone! How r ya? I’m OK…I’m feeling pretty blah right now, although I did get some sleep last night which is a good thing. Still, it’s difficult to really sleep well when you have to wake up every hour or two to have the nurse change your fluids/blood bag, or to stop the beeping from the iv machine. Plus I had nausea last night and this morning. Basically, I’m just hanging out in bed, listening to a CD, and writin’ on my blog….although I just had to take a break from that to draw my blood and eat some breakfast before taking 9 pills…nine pills! I know it’s not a lot for some people, but it’s certainly not something I’m accustomed to! And those meds aren’t including the anti-nausea I had through my iv. So I figure there are lots of reasons for me to feel a bit blah, between all the meds, the blood I got last night, and the i131 treatment. I’m feeling a little stronger after eating my oatmeal, so hopefully the rest of the day will go well.

I got on the bike in my room for about 5 minutes yesterday…then the phone rang, and I figured talking to Lori was much more important! :) I’ll get back on there later today to get my legs moving…I miss being able to do my laps! I heard someone outside walking his laps the other day, and he asked the nurse if it was safe for him to walk by my room and the woman’s next to me. Kinda weird to hear someone ask that, but hey!–I would be wondering the same thing if I were him! It’s just so crazy that nothing can go out of my room, except the blood I draw, and that goes into a lead tube that the nurses take. My trash cans are pretty full already, so I have to be careful not to let them overflow! :) I guess basically what I’m getting at is that I have a lot more responsibility as a patient while in isolation! I can’t be lazy and just say I don’t feel well while they cater to me. :) This is hard work!! But it’s good because then I don’t just lay around succumbing to the blah feeling…I’m forced to move around and kick myself in the butt when I’m dragging.

Anywayyyyyy, when going to bed at night, I listen to a guided imagery CD given to me by a friend. Margaret, I am really enjoying it, but I do have to admit that the first night I turned it on, when I was probably a little high what with the mix of the steroids, the bronchodilator and the Ativan, I was cracking up and talking to myself throughout. I wasn’t tired yet, and I was hoping the CD would do the trick, but instead it energized me a little. When the person speaking said you shouldn’t drive while listening to the CD because it put you into a dreamlike state, I couldn’t stop laughing. I was actually talking out loud, saying “Um, yah, proooobably not a good idea! hahahahaha” (and this is at 1 am in the morning…hope I didn’t wake my neighbors!) In another part, she said thank you to the cancer cells for helping to make us more aware of and thankful for what we have in life, I was like “Um, yah, but I didn’t need a second reminder!”…after thanking the cancer cells, she told them it was time for them to go, and I’m lying in bed cracking up and saying “Yah, get the hell outta here cells! You were never welcome anyway!” and laughing. Seriously, if anyone had seen me they would have thought I was a crazy person. Then there was another part that had me crying. She asked that we think of a place that means a lot to us, someplace safe and happy. I thought and thought, and decided on my front yard, playing with the dogs…then I started crying because I miss home and my pups….I told myself, “well, that’s not too happy if it’s making me cry!”, so I switched over to the Outer Banks, where my family went every year for many years until I ruined it in ‘05. :) Of course, what should happen next?! You got it! I cried again, because I miss the beach, and the last time we were there we had an extra special wonderful time because Ronnie and Kathy got married. Soon I start laughing at the fact that every happy place makes me cry. I mean, I was a crazy mess!!! :) On another part of the CD, she mentions something about cells saluting other cells…I’m not sure if she meant the cancer cells, but I started laughing again because I thought, there’s no way my good cells are saluting the cancer cells!–in fact, I’m pretty sure they’re flicking them off as the iodine comes to suck ‘em up. Good riddance, right?!!

Don’t get me wrong, I really enjoyed the CD! I found it very soothing, once I got over my craziness, but I was having a grand ol’ time the first night, laughing then crying then laughing again. I played it four or five times, but I never slept much, due to the crazy steroids, I assume. Last night, it worked perfectly!

Uh-oh—-here we go! I’m beeping again…this damn machine……..OK, now it’s almost 6:30 PM. I’m feeling much better than I felt this morning. I showered (woohoo!), I biked for about 20 minutes, I caught up with some friends and my fam on the phone, I visited with Laura and my mom, and now I’m watching “The Cosby Show” again. If I look outside my window, I can see Mount Rainier, which always looks extra beautiful when the sun is going down. Every time I look at it, I have to remind myself that it’s real…it looks like it’s painted into the sky. Looking through the hall out the window, I can see fans gathering for the UW game against Stanford…I have a pretty darn good setup, don’t you think?

Laura and my mom got some pics today, so Laura might post them on the blog later. Then you can see the little “bubble” I’m living in for a couple days. :)

I’m watching boats cruise by on the lake…wish I were out there ’cause it looks like an absolutely gorgeous night! The tops of all the beautiful evergreens are brightened by the last rays of the day…you know, that cool time in the evening when the light filters through the trees at just the right angle…the water is rippling, the boaters are out there cruising, and I’m sure every Seattleite, or whatever they’re called, is out there enjoying the evening.  I watch everything going on outside and it makes me look forward to being myself again, when I can go out and enjoy a football game or a boat ride, or simply a drive around town without having this nagging feeling at the back of my mind. I’m sure I’ll have the thought of cancer on my mind for a while, and it will always be there in some form, but I will have a normal life again when this is over, and I’m getting excited just thinking about it. I’m nervous about so many things, mostly about finding a career that will be truly fulfilling, but now I have more time to think about it. Despite the nervousness surrounding the search for the perfect job, I feel like I can do anything because of my experience with leukemia. So I’ll keep strong and look forward to all the good things that await me. In the meantime, I’m going to keep watching this “Cosby Show” marathon which was also scheduled at a perfect time during my isolation…isn’t that thoughtful of TVLand? :)

Hope you’re having a great weekend!!

Lots of love.

Hellloooo from Room 7218!!

Friday, September 26th, 2008

I’m here (in the University of Washington Hospital Center)! I had my i131 dose from 2-6, although I was here in my room since 11:30 or so to do my premeds and everything. It was pretty creepy because when the dose was ready, they wheeled in this big container on wheels…inside you could see about 700 pounds of lead bricks, and in the middle was a lead container which held the dose…apparently the iodine dose is hanging in the middle of the container. Now there’s a stationary bike where the creepy container was so I can get a little exercise between now and Tuesday! (well, hopefully Tuesday…they say it’s usually anywhere between 5 to seven days before I’m allowed to be out with all you normal people :) ).

There are gloves scattered all over my room (not on the floor, mind you, but on top of different objects that I will contaminate if I touch (e.g. my CDs, my laptop, my hairdryer and curling iron (yup! I brought them so I can feel extra good about myself…..I’m still really missing my makeup though!) ). They told me that if I touch any part of my laptop other than the keyboard (which is covered in plastic), they will have to keep it for 3 months! Well, that scared me, so I piled gloves on top of it, and my nurse put a note at the top which reads “Don’t forget your gloves!! Nurse Wendy :)”…..then she said “glove it if you love it”. hahahahahahahaha which is why I scattered the gloves. I’m just so afraid I”ll forget and just grab something with my hot little hands (hahah get the pun? “hot”…as in “radioactive”?!)

It’s pretty interesting though…I’ll have Laura put up some pics sometime this weekend…obviously I wasn’t going to bring my camera in here!!!! AND, I don’t have my phone! Many of you know that I’m an iphone addict, so I’m in a little bit of withdrawal, but I’ll be OK, so no worries. My phone number here is (206)598-7613. That is also covered in plastic, so if you hear a little rustling while talking to me, don’t be alarmed! If I don’t answer my phone, it’s because I can see the caller ID, and I don’t want to talk to you. hahahaha Just kiddin’ folks. It’s because I’m resting or talking to someone else. You can leave a message though! Unfortunately I couldn’t record a personal greeting. Lori and I thought it would be funny to say “Hey, you’ve reached Julie…I’m radioactive and can’t come to the phone right now, but leave a message!!” :)…Oh, man…I’m having a hot flash, but I don’t dare take my covers off because if the bottom of the computer touches the skin on my legs, it’s a goner for three months! By the way, the hot flashes aren’t from the dose, but rather from Zoladex, a monthly shot that’s supposed to help protect my ovaries.

What especially sucks about hot flashes and sweating is the fact that I can’t shower for 48 hours! Good thing I’m in isolation, right? –that way no one has to smell me. :) And the reason for that is pretty crazy…apparently iodine can be washed from my skin and my “hotness” (my made-up word, remember?) is not good for the sewage system. NOT GOOD FOR THE SEWAGE SYSTEM?!!!!!!! AND IT’S GOING THROUGH ME AS WE SPEAK?! In fact, I notice a green reflection of myself in my laptop….hahahahaha Pretty crazy stuff. The room is lined in lead (but I can’t see it, or that would be really creepy), the floor is covered in paper, my tray, drawers, door and faucet handles, and pretty much the whole room is covered in either plastic or paper or both. The weird thing is that the lead barrier at my door is not very big. It’s maybe 4 feet long and 1 1/2 feet wide, hooked in to a little cart on wheels which has a tray on top where the nurse stands and changes my iv’s and where they leave my meds and my food. I take my own vitals (blood pressure and temperature), my own blood (it’s pretty easy…I stop the flow of my iv fluids, lock that side of my catheter, clean the other side, screw on this plastic thing that has a needle, and slide the tube so the top goes into the needle. It’s like a vacuum so once I unlock my catheter, it automatically fills the tube with blood and stops when it’s full…pretty interesting, huh)?

So, while watching “Gray’s Anatomy” tonight, I discovered that next week is “National Stay at Home Week” for ABC! :) How’d they know I’d be stuck? :) Well, hopefully I’ll only be here ’til Tuesday, but the timing’s pretty good, don’t you think? Apparently they have a lot of season premiers coming up. But I also have a lot of wonderful books and some great DVDs!!

I have other exciting news….Katie’s coming next weekend! She’s known for a while, but she waited until I had my dose to tell me, which was a wonderful idea…gives me something to really look forward to! Not that I’m not looking forward to seeing you, Laura, but I didn’t think I’d see Katie until November!!!

So Lori and I were talking about how I should talk to my fellow neighbor in isolation through the wall since we’re in the same situation…she pointed out that prison mates do that. :) Ronnie likened it to McCain talking to his fellow POW. hahahahaha OK, it’s not that bad here! I have a nice view (don’t worry, I took a picture before being radioactive, so I’ll have Laura put it up for me sometime). I believe I’m looking out over Lake Washington…either that or the section where Lake Washington and Lake Union meet…I think they call it “the cut”. If I walk to my door, I can see the stadium for the UW football team. I also have lots of pics in my room…last week I printed out lots of pictures onto plain ol’ printer paper, so I made a collage of those. They keep me smiling!

Oh man…my hands are hot in these gloves!! I’m going to go watch some “Frasier”…it’s all about Seattle TV shows tonight!! Well, I did watch the “Cosby Show” earlier. I will always love that show. Not only does it bring back wonderful memories of watching it with my family when I was little, but it never fails to make me laugh out loud, which always feels good!!!

Hope you’re all doing well. As for me, I’m good! Hanging in there, you know, and plowing ahead. I’m happy and anxious that we got this process going!

Love from room 7218

Thursday, September 25th, 2008

Now, you know this is ‘gonna be a long one since I haven’t written in several days…you think you’re up to reading all of this (and looking at the beautiful pictures, of course)?!

All right, here we go! Tomorrow is the big day…well, one of the big days. I go in for my isolation, and right now I’m actually not too scared. Knowing that my hospital door is like a Dutch door (you know, the top part is open) makes me feel so much better, because I’ll be able to talk to people outside, and to hear what’s going on…I just can’t touch anyone! I’m thinking lots of positive thoughts, and I’m ready to get this process moving.

It was a wonderful weekend and week, and I enjoyed my time in Seattle and its surroundings…had to get it all in before this hospital/medical stuff starts, right?! My dad came this weekend, and the three of us went to Snoqualmie Falls which is just outside the city. Apparently it’s 100 feet higher than Niagara Falls! I’ve never been to Niagara, but I was surprised because I thought it was the biggest! Niagara has a much larger volume of water, but anyhoo…I’m sure this isn’t what you really want to read about! But it’s beautiful. And if you ever get to the area, there’s a really charming lodge that looks out over the edge of the falls…check it out: …my favorite part is that they have wood-burning fireplaces in every room!!

We really enjoyed our afternoon there, and then we headed to “Szmania’s”, a restaurant in the Magnolia neighborhood of Seattle. We found it by googling “sauerbraten”, my favorite German dish (you may remember from a blog post while I was in the hospital in June!–Laura surprised me with German food from my favorite German place in DC). It turns out “Szmania’s” has been among the top five of Seattle’s restaurants…it was even on the cover of “Gourmet” magazine once! There were articles singing its praises all over the wall, so I guess we picked a good place! We went back last night with Hollie, and enjoyed another delicious dinner.

When you go through the photos below, you’ll see we went to another yummy restaurant this weekend, “Ray’s Boathouse”. What a view! And I can say that about so many different places we’ve been to here in the “Emerald City” (I discovered the tourism department chose that name because there are so many beautiful trees and parks in the area—there’s green everywhere you look!). On Saturday night, we went to Il Terrazzo Carmine, a great Italian place recommended by one of my nurses. It’s cool ’cause it’s kind of secretive…we followed another group of people from the parking garage through an alley to the restaurant, and then we knocked three times so we could get in…hahahaha just kidding about the knocking part. The food was amazing also!

So I’m all full of food…my pants are gettin’ a little tight! Good thing I’m not keeping this up! It was a really special weekend though, stressful at times (especially while maneuvering our car around the city and surroundings…Garmin (or Garminita, as you call it, Paulina :)) is not always accurate and it turns out that ours is just a little bit schizophrenic.) because I think we’re all on edge, but it helped give me strength for what lies ahead. My mom and I both got our hair cut on Saturday, my apartment is really lookin’ good, I now have a new and BIGGER hula hoop (and yes, it works better!), and I feel good.

I have a new song I’m addicted to. Laura made a copy for me…I think it’s Portuguese…the group is called “Dulce Pontes” and here’s the song: I think the song is sad because it’s called “Lagrima” which means “tear” in Spanish and those two languages have many similarities, but it sounds so beautiful! Perfect for taking a little nap…I seriously put it on repeat and rested for 45 minutes…yup, that’s right…when I like a song, I like a song! Hopefully I won’t overplay it and get tired of it. :)

I hooked up my Wii over the weekend, so I’m looking forward to perfecting the ski jump, and practicing my bowling skills! I’ll try some of the other ones too, although I prefer the games that I’m good at, of course. Mostly I was impressed with my ability to hook up the Wii without anyone’s assistance, although I admit that it was really easy.

You’ll notice pictures of doggies in the photos below (what a surprise!). These pups belong to Vera, my other volunteer. I have two volunteers which makes me special! :) It was a gorgeous fall day…actually, it was the first day of fall!!! So I have two volunteers, Hollie and Vera, and 3 new doggie buddies, Kona, Lucky and Moe. Isn’t that great?

As you can read, I’m doing well, and I’m thinking positively for tomorrow’s infusion of the radioactive iodine. Come on, little mice antibodies and iodine, do your thing! I will not have my cell phone in the hospital, but I’ll have e-mail, and I will have a phone in the hospital. I’ll put that up on my blog tomorrow if I get the chance. I also have calling cards, so maybe I’ll just call you!

It feels kind of strange to be heading in tomorrow, not knowing exactly what to expect, and knowing that all this fun vacation-time will be over for a while, but I’m ready. At Szmania’s the other night, we toasted to a smooth procedure and wonderful family and friends (which we do all the time!). Then, I raised my glass again to thank my parents for everything, and I was getting choked up. I don’t remember exactly what I said, but I’m sure it was something amazing. When I was done, my dad looked up and said “I’m sorry…what did you say?” I didn’t realize he was distracted, but when he said that, my mom and I couldn’t stop laughing. This made it an even better moment because it lightened the tone of the evening…laughter always has a way of doing that! Of course, the tears did fall later that evening when I thanked them again, but that actually felt good too…I’m certainly not keeping much in, as you can tell!

I guess it’s time I start wrapping up this post. If there are no problems with the internet at the hospital, I’ll be on there tomorrow sometime. I will be in isolation for 5-7 days, depending on how long it takes for the radiation to go through my system. I feel like I’ve had a lot of paperwork to do while I’ve been here, and I just gave my Power of Attorney and Living Will to my social worker yesterday. It felt weird to fill those out, although I think everyone over 18 should have one. I tried to just think of them as more paperwork, but I know they obviously have a great deal of significance.

But it’s all positive thoughts right now…about the procedures to come, about my outcome, about my support network. BRING IT ON!!!

And you know what?! I have another travel destination. One of my nurses volunteered at the Iditarod this year (I think it was this year anyway), and she talked to my mom and me about it for a while yesterday. A family in Anchorage offered their home to her, and she said it was awesome. One of the activities she did was help hold the dogs before the race begins….each dog is assigned one person because they’re so excited to get going that it’s hard to control them…apparently some people lose control and have to drop and roll out of the way. She said it was beautiful, and the sport itself sounds fascinating. So, how about it? After Ireland and Greece, anyone up for a trip to Alaska to volunteer at the Iditarod?! Then we could travel in Alaska a bit. I’m sure the travel list will continue to grow, and I welcome any and all suggestions. Oh, by the way, did I mention Hawaii?! That’s up there too. :) I’m getting a little out of hand now, I know. OK, well it’s time for bed, so I’ll sign off. Thanks for reading everyone, thank you for your wonderful comments, your e-mails, calls, notes and gifts. I truly am overwhelmed by your love and thoughtfulness, and as I keep saying, you are my strength!!!!!

Lots of love from the Emerald City (you better know why it’s called the Emerald City now…if not, it means you are merely scanning my blog and not reading every magical word…so read up!! hahahahahaha)

PS Enjoy the photos…that’s it for my tours of Seattle for a bit. Think I should work for the tourism department?! :)

Technical difficulties

Friday, September 19th, 2008

Happy Friday, everyone!

I’m sitting here in “patient resources” in the clinic, writing from one of their computers because the damn internet at home isn’t working!  They won’t have a technician come until Monday…unacceptable, I say!!!  Gosh, what did I ever do without the internet?  By the way, I believe the final answer about having my laptop in the hospital while I’m radioactive is yes!  They will wrap it in plastic so I don’t transfer any of my hotness (I’m not speaking in beauty terms here…I’m referring to the radioactive side of me….even so, is “hotness” really a word? I guess it would be “heat”…whatever!!). 

I have an appointment with Dr. Appelbaum and my team nurse at 3:30 (it’s 1:20 right now), and as always, I’ve prepared a list of questions for them.  First and foremost on my list deals with how I felt Wednesday and Thursday.  As you know, I had my test dose of the i131 on Tuesday, and I had the minor reaction which required a bronchodilator…oh, and I have to make a correction to my previous blog.  The “pipe” itself is actually called a nebulizer, and the stuff I breathe in is a bronchodilator because it opens up my bronchi and bronchioles.  Anyhoo, what was I saying….oh yah, so I had that minor reaction, and I stayed up late Tuesday night to finish my blog.  I went to bed at 1, not feeling tired yet (I’m assuming because they gave me several infusions of steroids).  I didn’t sleep much all night, and I woke up Wednesday exhausted, super-achy (mostly in my skull, legs and hip (the hip soreness was from the bone marrow I had Tuesday afternoon)) and with blood-shot eyes, another possible reaction to the iodine.  I did everything I had to do that day, but I felt pretty crappy.  In the evening, we called the clinic several times while we were monitoring my fever.  I took some Tylenol, but an hour later, my fever went up to 100.8, which, as my mom points out, isn’t so bad if you’re a “normal” person, but you have to be extra careful with me…..that’s right, I’m special!!  And don’t ever forget it!  :) 

We ended up going to the University of Washington Medical Center, and they believed everything was a response to the iodine dose.  It was quite a pleasant experience there too.  We arrived around 10, a nurse took my vitals, blood from my line and my arm to check for any bacteria, I met with a doctor, and they took a chest X-ray.  After that, they sent me home, thank goodness!  My fever had gone down, and I was feeling a little better. 

I still felt pretty crappy yesterday, especially with the achiness, and then later, diarrhea (sorry, but I tell it all on this blog!!  You probably know that by now.  :) )  The skull pain was the weirdest feeling.  It’s not like a typical headache, but it feels like a bruise that’s shaped like a ring going all around the top of my skull…even putting my head on a pillow made me wince slightly. 

Wow, I’m being super long-winded about this story.  To make a long story short (or is it too late for that?!), I felt crappy the last couple of days and now I feel pretty good!  Unfortunately, we’re going to cancel our plans to visit a lodge near Mount Rainier this weekend, because if anything were to happen…if my fever comes back or anything, we would be two hours away from the clinic and the hospital, and I don’t need to take any risk like that right now.  I’m disappointed, but I think my mom, dad and I will find plenty other activities out here to keep us busy.  We’re hoping to go to Snoqualmie Falls, which is supposed to be beautiful.  Check it out: 

In other news, I found a hula hoop!  Finally, huh?  I found it at a kite/toy store near Lake Union.  I firmly believe, however, that I purchased one that is too small for me, because I can’t keep it going as long as before.  This has caused me to realize that one does not ALWAYS smile while hula hooping…sometimes one must cuss a little to encourage it to keep on going round and round…that doesn’t work very well though.  I will keep practicing, and once I’ve mastered it, I’ll send pics–no sense embarrassing myself, right?!  I think I already did that when I shared with you the picture of me as a child with gigantic cheeks.  :)

I have some really interesting news to share with you that I wasn’t aware of before…I am part mouse now.  Yup, you read that right.  The antibodies that carry the iodine to my cells are from mice!  The man who does my scans said lots of mice died for me.  :(  Oh well…at least they died honorably, right?  Now I’ll start visualizing the little mice from “Cinderella” sweeping out the bad cells and cleaning up my marrow so it’s like new…and of course it will be new!  I will become Laura, remember?! 

And speaking of Laura…she, Ronnie, Katie, Kathy and Tiso all came together to have a beautiful silver bracelet made for me.  Each link has one of their names on it, and it fits perfectly!  I’m wearing and admiring it as I type.  I love it, guys!  Thank you so much. 

I have a funny story to share with you, involving, who else?…my mom!  But this time, it’s kind of at her expense…sorry, mom!  It’s still funny.  :)  We were in the waiting room before I had my bone marrow biopsy the other day, and we were seated across from a father, his daughter who was 3 and his little baby.  The girl, Milly, was definitely pissed about the attention her brother was getting, so she had her arms crossed and was looking out the window, her lip sticking out in protest.  My mom commented on her pretty pink hat and dress, and before long she was smiling and talking, and she came over to look at all the pictures on my iphone.  Then she sang a really pretty song called “Never Give Up” (prompted by her dad)…I was a little worried that the song may never end, but nonetheless I enjoyed it.  :)  There sure were a lot of verses though.  Anyway, the guy’s wife comes out and they’re getting ready to leave and he says to Milly, “Say goodbye to your new grandma!”, indicating my mom.  hahahahahahahahaha  I couldn’t laugh in front of them, but believe me, I was laughing inside!  I brought the whole “grandma” thing up later with my mom and she told me to “shut up!”  :) –can you believe it?  She told a cancer patient, her own daughter, to shut up!  She did say it with love though. 

You still reading?  I just have to get one more thing out.  I went to see my social worker yesterday, as I do every week, and it was the first time I’ve cried while in a session.  I told her about how I worry about death sometimes, but that I think it’s normal…I’m not obsessed.  She asked me what about it worries me (not implying that I would die, but just trying to elicit my feelings!).  I couldn’t help it, and I broke down.  This is basically how it went:  “I’m only 30.  It’s not fair (insert some hiccups and snotty noises into this while reading to make it more realistic :) )…I watch tv and everyone seems so normal, but then again I know they’re all actors and it’s probably not real.  I see people walking down the street and into stores, and they just have no idea.  All these people just have no idea.  And it’s not fair.  I’m much madder this time than I was before.  I have so much I want to accomplish. I’m not saying I think I will die, because in my heart, I think I will live.  But the worry is there.  I have too much to see and do, it’s not fair to be dealing with this now.  If I die, I worry about my family and my friends…and my dogs (of course, they’re part of my family)…I know that might sound silly, but I do.  I don’t want anyone to feel sad.  And I don’t want to die.”  So basically, that was my rather long reply to her question.  It was just one long train of thought that had no organization whatsoever, but she understood me.  And I’m sure you do too.  It’s so much easier to feel down when I don’t feel well physically, so yesterday and the day before had some tough moments.   It’s hard to know that I’m just getting started with all of this, and most likely the worst is yet to come, but I will keep doing what I can do…I’ll go through the annoying routine of covering up my catheter every day to take a shower, of flushing it once I’m out, I’ll eat breakfast, I’ll brush my teeth, I’ll plan my day, I’ll take all my meds, eat lunch and dinner, drink water, take walks when I’m up to it, and I’ll go to every appointment I have….I’ll just keep on keeping on!  :)  It’s not like I have any other choice. :)  But I guess the main gist of my feelings lately is that it’s just not fair.  I know you cannot expect fairness in life, but it is so hard to look around at both strangers and friends and family who carry on with their lives, living them as I dreamed I would.  I realize everyone is different, and each path leads that person to a different place, but it doesn’t make it easier knowing that. 

The highlight of this whole process is spending time with family and friends, hearing from you on the blog and in e-mails (despite the fact that I haven’t written back in like a month!), by phone and through the mail.  I’ve said it before, but damnit, I’ll say it again!  You constantly remind me that I am never alone.  OK, OK, one last story.  Speaking of alone, there’s one older man my mom, Paulina and I noticed in our apartment building recently who hangs out in the common area downstairs by himself.  The first few times I said “hello”, he didn’t answer.  My mom basically forced him to say hi to her when she yelled out “HEY THERE!  HOW YA DOIN’?”.  :)  We’ve taken it upon ourselves to keep talking to him, whether he answers or not.  He seems so lonely, and I cannot imagine what it would be like to go through this alone.  But then again, if he doesn’t answer people when they say hi to him, I guess he wouldn’t have many friends, huh?!  hahaha  Sorry, I couldn’t resist.  I’ll keep you posted on him.  Who knows?  Maybe we’ll be buddies at the end of all this? 

Hope everyone is doing well.  And I hope my internet is fixed Monday! 
Have a wonderful weekend.

Lots of love.

PS My favorite was photo number 2!  Glad you agree!  I also like number 10 because of the beautiful background, but I think Paulina and I look better in number 2.  Thanks for playing along!!

Here I am!!!!

Wednesday, September 17th, 2008

Sorry for the hiatus, folks! I put together a lovely (if I do say so myself) photo essay for you to check out my last several days. Paulina came out on Thursday, so you can blame the lack of posts on her. :) hahahaha Just kidding…my mom and I really enjoyed our time with her, and we were so busy doing fun things (as you’ll see by the photos) that there was no time for updates. See, it’s a good thing! But I know you really missed me…so no worries, here I am!!

One of the coolest things Paulina and I did was to take a ride on a seaplane! It was a gorgeous day with perfect shots of Mount Rainier…all I have to say is, thank God for image stabilization so your photos aren’t blurry!! That little plane is not the smoothest ride, but it was wonderful! Our pilot was really friendly, and it was quite obvious that he loved his job. He kept saying that we really lucked out on the day because it was so nice out.

Friday night, Paulina, my mom and I went out to dinner with Holly, one of the volunteers I wrote about before (SCCA matched her up with me). After she, Paulina and I walked a little bit around Lake Union with her dog, Kona, she took us to “Norm’s”, a cool restaurant that allows you to bring your dog to dinner with you!!…yup, even inside! Surprisingly, the food was good too (I mean, if you think they’re focusing on the dogs, they’re not so much concentrating on the food, right?)! As I wrote in a photo below, Seattle seems like a great place to pick up a guy because they just come up to you when you have a dog (and yes, it works the other way for guys too…at least with me anyway)! :) One guy who was really good looking walked into the restaurant with his 205-lb (my mom and Paulina quizzed him later, trying to hook Holly or myself up with him! hahaha) Mastiff and Holly looked over and said “Hey, gorgeous!” I was teasing her because I didn’t know if she meant the dog or the owner! Turns out, by the way, the dog is a puppy and will probably gain 80 more pounds!! He eats something like 12 cups of dry food a day, 2 pounds of meat and 6 raw eggs!!! Paulina was so up-front, she asked if the dog slept in the bed with the guy! Good thing she didn’t go too far and ask if anyone else did. hahahahahaha

I’m really looking forward to hanging out with Holly, and also to meeting my other volunteer (she didn’t feel well on Friday…she’s 8 months pregnant!). The SCCA sounds like they made perfect matches because both are my age and have similar interests….speaking of which, maybe I should have the SCCA set me up with a date when this is over! They make good matches so far! :)

Paulina left yesterday, and it was hard to say good-bye, as it has been with everyone. To be honest, the last several weeks have seemed like a vacation because I’ve felt relatively normal, and I’ve been lucky enough to have been surrounded by love, and to have the opportunity to really explore Seattle and its surroundings. Fear is setting in a little bit more now, because the whole process is getting closer and closer. It’s pretty hard to feel like myself now, but to be fully aware of the challenges and difficult days I have starting next week (the 25th is my first day in isolation). I’ve noticed that the worry of dying crosses my mind a little more than it did before, but I’m not obsessive or anything. As I told Lori tonight, I acknowledge the thought, and then I tell myself it is what it is. I will do everything I can to prevent infection and to keep exercising, but whatever happens happens. I talked to my mom about it too after we dropped Paulina off at the airport, and she reminded me of a saying her mom used to say: “You gotta make hay while the sun shines”…very true, and I have been doing just that these past weeks and before I left Virginia. I think the knowledge that my test dose of the radio-labelled iodine was Monday (although it was later rescheduled for today) hit me after Paulina left. Here I am, having all this fun, but wait!—there’s lots of scary stuff ahead. Paulina, don’t be upset about this! It just reinforces the fact that I had a wonnnnnderful weekend, and I have lots of good pictures of us now (if you look at the gallery of photos below, you’ll notice I wrote about how we have no good pics together even though we’ve been friends for 8 years…you guys have to pick your favorite photo!).

Today, my mom and I went to the hospital to meet my clinical research nurse (who will be my nurse through the radio-labelled iodine and isolation). It took about 4 hours or so, but I slept the whole time! They gave me 50 of Benadryl (IV, which makes you more tired and slightly tipsy-feeling very quickly!), a couple infusions of hydrocortisone (steroids–which is probably why I’m still awake at 11:58 PM! I took my Ativan, but it hasn’t kicked in yet), tylenol, and the iodine. I did really well, except for the minor reaction I describe in the photo below (so you’ll have to keep reading!). :) We really liked my nurse, and she wore her dog shirt in my honor because she read on my social history that I love dogs. She also shared a story with us that made me feel good: her mom is an AML (acute myelogenous leukemia) survivor. She had it once, went into remission, and it came back 2 1/2 years later. She then had a transplant and she has been doing well for 15 years!!!!!!!!!!!! I thought the story sounded similar to mine, so I thought it was a good sign.

Now here’s a funny story….enough with all the serious stuff, right? My mom and I went to a yummy diner-like place for dinner (I had breakfast for dinner, always a good choice), and I noticed after being there a couple minutes that the knife was acting like a magnet…I tried to pull my spoon and fork away and it dragged the knife along with it! I asked my mom if hers did the same, and she started cracking up, telling me that it was because I was slightly radioactive…well, of course I believed her, and we spent half of the evening switching our utensils back and forth…at one point, hers seemed magnetic too, and then they both stopped. But seriously, don’t you think it could have been me? How cool would that be?! It would be a plus from this whole procedure, and according to Ronnie, I could make tons of money doing magic tricks for the masses. :) hahahaha

And speaking of radioactive, my nurse told me that I would be allowed to take my laptop to the hospital next week, but not my phone or much else…they have to clean off anything you take in there (if you touch it with your hands without wearing gloves) in this special room. She said they could do the computer right away, but the other things would have to wait…even a bra and underwear! I got to laughing though because I will obviously have a lot of time to fill, and I told my mom I’ll send out “hot” (radioactive) thank you notes, because I haven’t sent any yet! Don’t worry though…I won’t…or will I?! You might want to think about wearing gloves out to your mailbox from now on. hahahaha

Anyway, I’ve gone on and on, as always. I’m going to go read for a while and see if that puts me to sleep…I’m glad the steroids worked for a bit so I could finish this post! :) So all in all, everything is going very well out here. I have scans all this week to see how fast I metabolize the i131, and to make sure it’s going to all the right places in the body. It’s pretty cool, actually. After getting the test dose today, I had a Gamma scan, and you can see where the iodine is because it lights up on the computer screen….my spleen, liver, spine, sternum, pelvis, part of my skull, and parts of my arms and legs (wherever there’s bone marrow) lit right up (kind of like a Lite Brite…remember those?)….the liver is the only organ in that list that does not need iodine, but they monitor it for me to try and make sure it’s not damaged.

Anyhoo, I’m off to go rest so I can be up early for my scan and bone marrow biopsy (this is also related to the i131…from what I understand, the results will help them calculate the proper dosage for next week). I hope everyone is doing well!

Sending lots of love from beautiful Seattle. Enjoy the photos!