Hey there everyone!
I just wanted you to know I'm home! I'm sitting here in my bed (even though it's downstairs in the living room 'cause it's easier to make sure the hardwood floors are clean than the carpet, and well, to be honest, my room's a bit messy! :) ), with my pups sleeping on the couch beside me. Jameson hasn't really let me out of his sight too much since I've been home, and Guinness has been much cuddlier (is that a word?--it seems like I make up a lot!).
I'm having a difficult time adjusting, although I imagine it's that way for anyone who spends a while in the hospital. I'll write more tomorrow, but I just wanted you to know that I'm home. We don't have any more details about the transplant yet, but hopefully we'll figure that out soon. I went to my ENT today, and he put a tube in my left ear to help drain out some fluid (gross, I know!), but hopefully that will help. There's no way I can get on an airplane while I'm unable to equalize (I think that's the right word for it :) ) my ears...I just thought about that last night, and my ENT said today that it would be really painful if I go before this is all fixed, so I guess I have some more visualizing to do.
It's so weird to be out and about, seeing everyone else go about their daily business while all this is happening to me. I've heard people say that before, but I never quite felt it like this. I'll write more tomorrow, but know that I'm OK...a little down, but still OK. Hope everyone is doing well! I have lots of positive things to share with you too, so I'll do that when I have a little bit more energy.
Hope everyone's doing well!
Monday, June 30, 2008
Saturday, June 28, 2008
Hola ;)
Hey there!
Just another Saturday night here in the hospital. :) Well, not just any Saturday night....my last Saturday night (and last night in general)! I enjoyed my visitors today, did 23 laps, went 163' in the Wii Fit ski jump game (yah, that's rated as a "professional!"---much better than constantly being labeled "unbalanced"...like I wrote before, it's a very rude machine). My blood numbers are higher than they've been since I originally got sick in '05, so the Neupogen is working! My ear, however, feels worse, so I need to work on more visualization to get it unclogged or de-infected (disinfected just doesn't sound right when talking about ears). I'm getting Levaquin (in pill-form) and Cipro ear drops, so hopefully they'll work together to fix this really annoying issue. But again, I know it can always be worse....still, the dramatic part of me thinks "How frustrating would it be if I had to go through cancer treatment and lost part of my hearing during it?!" :) Like I said, I'm hoping it works itself out, or maybe my platelets will go up so my ENT can put another little hole in my eardrum like he had to do in '05 (I had sinus pressure issues when I was diagnosed in '05, probably stemming from the time in the airplane from Quito to DC).
Anyhoo, that's what's going on here. I had a little crying-in-my-breakfast-episode again this morning. This time it was Frosted Flakes though, and I think it's because they were "reduced sugar"....why on earth would anyone make Frosted Flakes with reduced sugar? Isn't sugar the whole point of the cereal?!!!!! Anyway, one of my favorite nurses happened to come in when I was crying, along with her extern who is really nice. I just let it all out again!! I told them about how I was scared about the transplant and leaving everyone; how I thought I was 3 1/2 years out so I was safe from leukemia; how I'm 30 and living at home (again, I love you, Mom and Dad, but you know what I mean!!) and single; how I know I have lots of positive things like my support network, my sister as a match, etc, etc., but I still feel sad sometimes...I just let it all hang out again!! Guess you'll never have any problem getting me to express my feelings....you might have a hard time getting me to shut up, but that's it. :)
I don't want you to think I cry every time I'm alone 'cause honestly I don't! I just need to get stuff out sometimes...a lot of times music (or the ocean :) ) will prompt the tears---lately it's been "Fix You" by Coldplay...the first time I was diagnosed it was "Everybody Hurts" by R.E.M. (I know, how original!) (Laurel, I know these are both on the CDs you made for me, but don't feel bad 'cause I love the songs and sometimes they're just what I need to help get the tears to come if I'm feeling overwhelmed...happy or sad, music is a very important therapy for me).
I haven't done too much reading since I've been in here 'cause I've had so many wonderful visits and at night, I typically watch some tv or a movie, but reading is also therapeutic for me. I was reading a new James Patterson book today, and he was describing a little girl who had an imaginary friend and an indifferent mother. He wrote about how she always seemed to be cuddling different objects, commenting that "she had a lot of hugs to give, but not enough people to give them to." Something about that line really touched me. I felt bad because I know there are people like that in the world, and then I felt sad because I haven't hugged anyone in almost a month...those "air hugs" I give just aren't the same. I'm lucky because I do have a lot of people to hug, but I guess you don't realize how much you miss the human contact. Again I sound so dramatic, but it just got me thinking, and I will be happy when I can hug someone again, although at the same time, I feel like the first time I can truly give someone a hug, I'm going to lose it because I'm so emotional this time around...especially because I know my first hug will be my mom or dad. So many emotions and feelings go unmentioned or even acknowledged in this whole process because we're all trying to stay strong, and I know my parents are tired, sad, worried and stressed. I know lots of times I save my orneriness (I thought I made up that word, but I just checked on dictionary.com, and it's actually a word! :)) for you two, and I'm sorry for that, but I guess at least you know I'm not putting on any facade for you! If I'm worried or upset about something, I just lay it out there for you, but I know sometimes I just get quiet when there are no other guests around, and then I worry when you leave that I didn't try hard enough to enjoy each moment with you, 'cause after all, isn't that the main lesson in this crappy situation? Always enjoy each moment with those you love. THEN I realize, well, I don't exactly feel 100% right now, and I know you know how much I love and appreciate you, so I most likely don't offend you. And, actually, this goes for the whole fam: Mom, Dad, Ronnie, Kathy, Laura, Tiso and Katie: I appreciate and notice everything you do even if I don't comment on it. I love you all so much, and I too keep thinking about our trip to Seattle before all this crap happened again. We were so lucky to be able to do that together, and I have a lot of wonderful memories (and photos) of the trip that I know will help me get through the next several months.
The next time I write, I'll be at home! Woohoo!!!!! :) I'll just finish with some of the lyrics from "Fix You"....I know it's meant to be a love song, but it seems like you can apply it to life in general also:
"When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
When the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?
Lights will guide you home"
Sometimes, I'll be listening to it and at the part for "could it be worse", I'll say (out loud) "um, yah...you could have leukemia!" :) Anything to help keep myself entertained. But even with leukemia, things could always be worse...I still consider myself lucky. Now, if I could just fix this damn ear! I like the "Lights will guide you home" part 'cause, well, I'm goin' home tomorrow, and knowing that I have such a wonderful home to return to (even if I am 30 and live with my parents) :) is reassuring. Despite my stress of leaving the hospital and what lies ahead, I look forward to being home with you, Mom and Dad (and all my four-legged buddies also, of course)! Love you lots.
Just another Saturday night here in the hospital. :) Well, not just any Saturday night....my last Saturday night (and last night in general)! I enjoyed my visitors today, did 23 laps, went 163' in the Wii Fit ski jump game (yah, that's rated as a "professional!"---much better than constantly being labeled "unbalanced"...like I wrote before, it's a very rude machine). My blood numbers are higher than they've been since I originally got sick in '05, so the Neupogen is working! My ear, however, feels worse, so I need to work on more visualization to get it unclogged or de-infected (disinfected just doesn't sound right when talking about ears). I'm getting Levaquin (in pill-form) and Cipro ear drops, so hopefully they'll work together to fix this really annoying issue. But again, I know it can always be worse....still, the dramatic part of me thinks "How frustrating would it be if I had to go through cancer treatment and lost part of my hearing during it?!" :) Like I said, I'm hoping it works itself out, or maybe my platelets will go up so my ENT can put another little hole in my eardrum like he had to do in '05 (I had sinus pressure issues when I was diagnosed in '05, probably stemming from the time in the airplane from Quito to DC).
Anyhoo, that's what's going on here. I had a little crying-in-my-breakfast-episode again this morning. This time it was Frosted Flakes though, and I think it's because they were "reduced sugar"....why on earth would anyone make Frosted Flakes with reduced sugar? Isn't sugar the whole point of the cereal?!!!!! Anyway, one of my favorite nurses happened to come in when I was crying, along with her extern who is really nice. I just let it all out again!! I told them about how I was scared about the transplant and leaving everyone; how I thought I was 3 1/2 years out so I was safe from leukemia; how I'm 30 and living at home (again, I love you, Mom and Dad, but you know what I mean!!) and single; how I know I have lots of positive things like my support network, my sister as a match, etc, etc., but I still feel sad sometimes...I just let it all hang out again!! Guess you'll never have any problem getting me to express my feelings....you might have a hard time getting me to shut up, but that's it. :)
I don't want you to think I cry every time I'm alone 'cause honestly I don't! I just need to get stuff out sometimes...a lot of times music (or the ocean :) ) will prompt the tears---lately it's been "Fix You" by Coldplay...the first time I was diagnosed it was "Everybody Hurts" by R.E.M. (I know, how original!) (Laurel, I know these are both on the CDs you made for me, but don't feel bad 'cause I love the songs and sometimes they're just what I need to help get the tears to come if I'm feeling overwhelmed...happy or sad, music is a very important therapy for me).
I haven't done too much reading since I've been in here 'cause I've had so many wonderful visits and at night, I typically watch some tv or a movie, but reading is also therapeutic for me. I was reading a new James Patterson book today, and he was describing a little girl who had an imaginary friend and an indifferent mother. He wrote about how she always seemed to be cuddling different objects, commenting that "she had a lot of hugs to give, but not enough people to give them to." Something about that line really touched me. I felt bad because I know there are people like that in the world, and then I felt sad because I haven't hugged anyone in almost a month...those "air hugs" I give just aren't the same. I'm lucky because I do have a lot of people to hug, but I guess you don't realize how much you miss the human contact. Again I sound so dramatic, but it just got me thinking, and I will be happy when I can hug someone again, although at the same time, I feel like the first time I can truly give someone a hug, I'm going to lose it because I'm so emotional this time around...especially because I know my first hug will be my mom or dad. So many emotions and feelings go unmentioned or even acknowledged in this whole process because we're all trying to stay strong, and I know my parents are tired, sad, worried and stressed. I know lots of times I save my orneriness (I thought I made up that word, but I just checked on dictionary.com, and it's actually a word! :)) for you two, and I'm sorry for that, but I guess at least you know I'm not putting on any facade for you! If I'm worried or upset about something, I just lay it out there for you, but I know sometimes I just get quiet when there are no other guests around, and then I worry when you leave that I didn't try hard enough to enjoy each moment with you, 'cause after all, isn't that the main lesson in this crappy situation? Always enjoy each moment with those you love. THEN I realize, well, I don't exactly feel 100% right now, and I know you know how much I love and appreciate you, so I most likely don't offend you. And, actually, this goes for the whole fam: Mom, Dad, Ronnie, Kathy, Laura, Tiso and Katie: I appreciate and notice everything you do even if I don't comment on it. I love you all so much, and I too keep thinking about our trip to Seattle before all this crap happened again. We were so lucky to be able to do that together, and I have a lot of wonderful memories (and photos) of the trip that I know will help me get through the next several months.
The next time I write, I'll be at home! Woohoo!!!!! :) I'll just finish with some of the lyrics from "Fix You"....I know it's meant to be a love song, but it seems like you can apply it to life in general also:
"When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
When the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?
Lights will guide you home"
Sometimes, I'll be listening to it and at the part for "could it be worse", I'll say (out loud) "um, yah...you could have leukemia!" :) Anything to help keep myself entertained. But even with leukemia, things could always be worse...I still consider myself lucky. Now, if I could just fix this damn ear! I like the "Lights will guide you home" part 'cause, well, I'm goin' home tomorrow, and knowing that I have such a wonderful home to return to (even if I am 30 and live with my parents) :) is reassuring. Despite my stress of leaving the hospital and what lies ahead, I look forward to being home with you, Mom and Dad (and all my four-legged buddies also, of course)! Love you lots.
Friday, June 27, 2008
Happy Friday everyone! I'm sitting here watching "Wedding Crashers" and cracking up....seriously, if you haven't seen this movie, it's hiiiiiiiiiilarious!!
Laura, thanks for posting the photos. As you can all see, we had a great dance party, even if it was only the two of us! We must have listened to that song about 50 times yesterday.
First things first: I'm going home Sunday instead of tomorrow, which is fine by me. Honestly, just thinking about taking apart the room (even if I know I won't be made to do much work...after all, I am a cancer patient :) ) makes me tired. It also makes me tired to think about putting it all away when I get home (even if that means just putting it on the floor of my room). Then I think about driving back and forth to the doctor, taking care of my catheter, little things that I guess add up...not that I don't have tons of help and support, 'cause I do, but it still feels kind of stressful. I also know there are lots of positives that await: my pups, of course!; my shower with the good, warm water and water pressure; my family (sorry to put you after the shower and dogs, but you know how much I love ya! :) ---guess you know what's on my mind though--Jameson, Guinny; a nice warm shower with normal wash cloths and towels; my own bed; good food. So there are lots of good things awaiting me! I guess I'm just pondering the next couple weeks in general...sometimes it's hard to focus on the day-to-day when you have no idea what to expect, although isn't that what life is like in general? Geez...I'm so philosophical lately!! The difficult part for me right now is that I know what's coming will not be pleasant, so even after a wonnnnnderful day spent visiting with friends and family, I think of the next couple weeks and I feel tired, scared, vulnerable, and a bunch of other stuff that I don't know how to articulate. How's that for eloquent?
So I've decided to pick things to look forward to....I do this a lot anyway, even when I wasn't sick. Even if it was an event that was weeks or months away, sometimes it's just what I needed to motivate me to keep on chugging through the everyday humdrum that I miss now. :) Here's what I decided to do: I'm going to buy a guide book for Ireland, and take it with me wherever I go (by this, I don't mean I won't let it out of my sight, I mean I'll take it with me to wherever I get my treatment), so I can read up....hahahahaha sorry, I'm distracted now....Vince Vaughan is talking about his "stage five clinger" in the movie right now...I love this part!!!! OK....back to Ireland: I figured even if I won't be able to go for a couple years, the book will give me something special to look forward to. I have been thinking about visiting Ireland for years now, so just reading up on it will be fun. I figure I'll have to update the guidebook whenever I go, but I'll already know lots about the history and the different parts of the country and where I want to visit.
Speaking of Europe (OK, not the best transition, but I tried), I had a deeeelicious dinner from my favorite German restaurant last night!!! Laura, my parents and Lori surprised me, and it was quite a nice treat! I can never get enough Sauerbrauten and red cabbage....and the potato dumplings and potato pancakes with applesauce....mmmmmm!! And then there was cake.....sorry you missed it, Kathy. I know how you feel about cake. :) I should have weighed myself today to see how much I gained from the one meal! Thanks for planning that, Laura! It was a wonderful surprise! And thanks, Pete for helping her pick it up---for braving the traffic and having to hang out with Laura the whole time. hahahahaha
I visited with another cute dog today, and her owner said she saved me as the last patient because she knew her dog would be spoiled in my room--lots of pats and some yummy treats. I'm glad I'm one of the dogs' favorites. :) I can't wait to see Jameson and Guinness!!
Let's see...not too much else to say today. I got some platelets, had lots of wonderful visitors, and really enjoyed my day. I'm feeling good other than my congestion (are you sick of hearing about that?) and my totally clogged left ear---they switched my ear drops to Cipro because my doctor thinks there's a small outer ear infection....hmmm....do you really want to know all these details? I keep reminding myself that even though it's realllllly annoying that I've had a cold/cough/congestion for about 2 months now, things could be a lot worse. That always makes me feel a little better.
OK, I'm getting sleepy (it's actually 10:08 even though the entry says otherwise :) ) so I'm gonna sign off. Hope all is well with everyone, and as always, thanks for everything!!!!!!
Love ya.
Laura, thanks for posting the photos. As you can all see, we had a great dance party, even if it was only the two of us! We must have listened to that song about 50 times yesterday.
First things first: I'm going home Sunday instead of tomorrow, which is fine by me. Honestly, just thinking about taking apart the room (even if I know I won't be made to do much work...after all, I am a cancer patient :) ) makes me tired. It also makes me tired to think about putting it all away when I get home (even if that means just putting it on the floor of my room). Then I think about driving back and forth to the doctor, taking care of my catheter, little things that I guess add up...not that I don't have tons of help and support, 'cause I do, but it still feels kind of stressful. I also know there are lots of positives that await: my pups, of course!; my shower with the good, warm water and water pressure; my family (sorry to put you after the shower and dogs, but you know how much I love ya! :) ---guess you know what's on my mind though--Jameson, Guinny; a nice warm shower with normal wash cloths and towels; my own bed; good food. So there are lots of good things awaiting me! I guess I'm just pondering the next couple weeks in general...sometimes it's hard to focus on the day-to-day when you have no idea what to expect, although isn't that what life is like in general? Geez...I'm so philosophical lately!! The difficult part for me right now is that I know what's coming will not be pleasant, so even after a wonnnnnderful day spent visiting with friends and family, I think of the next couple weeks and I feel tired, scared, vulnerable, and a bunch of other stuff that I don't know how to articulate. How's that for eloquent?
So I've decided to pick things to look forward to....I do this a lot anyway, even when I wasn't sick. Even if it was an event that was weeks or months away, sometimes it's just what I needed to motivate me to keep on chugging through the everyday humdrum that I miss now. :) Here's what I decided to do: I'm going to buy a guide book for Ireland, and take it with me wherever I go (by this, I don't mean I won't let it out of my sight, I mean I'll take it with me to wherever I get my treatment), so I can read up....hahahahaha sorry, I'm distracted now....Vince Vaughan is talking about his "stage five clinger" in the movie right now...I love this part!!!! OK....back to Ireland: I figured even if I won't be able to go for a couple years, the book will give me something special to look forward to. I have been thinking about visiting Ireland for years now, so just reading up on it will be fun. I figure I'll have to update the guidebook whenever I go, but I'll already know lots about the history and the different parts of the country and where I want to visit.
Speaking of Europe (OK, not the best transition, but I tried), I had a deeeelicious dinner from my favorite German restaurant last night!!! Laura, my parents and Lori surprised me, and it was quite a nice treat! I can never get enough Sauerbrauten and red cabbage....and the potato dumplings and potato pancakes with applesauce....mmmmmm!! And then there was cake.....sorry you missed it, Kathy. I know how you feel about cake. :) I should have weighed myself today to see how much I gained from the one meal! Thanks for planning that, Laura! It was a wonderful surprise! And thanks, Pete for helping her pick it up---for braving the traffic and having to hang out with Laura the whole time. hahahahaha
I visited with another cute dog today, and her owner said she saved me as the last patient because she knew her dog would be spoiled in my room--lots of pats and some yummy treats. I'm glad I'm one of the dogs' favorites. :) I can't wait to see Jameson and Guinness!!
Let's see...not too much else to say today. I got some platelets, had lots of wonderful visitors, and really enjoyed my day. I'm feeling good other than my congestion (are you sick of hearing about that?) and my totally clogged left ear---they switched my ear drops to Cipro because my doctor thinks there's a small outer ear infection....hmmm....do you really want to know all these details? I keep reminding myself that even though it's realllllly annoying that I've had a cold/cough/congestion for about 2 months now, things could be a lot worse. That always makes me feel a little better.
OK, I'm getting sleepy (it's actually 10:08 even though the entry says otherwise :) ) so I'm gonna sign off. Hope all is well with everyone, and as always, thanks for everything!!!!!!
Love ya.
Julie's surprise from last night :)
The surprise we had planned for Julie was dinner from her favorite restaurant, "Old Europe". (It's a German restaurant downtown) She usually asks to go to "Old Europe" for her birthday every year, and since she can't go there yet, we brought "Old Europe" to her! :) Here are a few pics from last night: 1) Julie enjoys her Sauerbraten, 2) My Dad & Mom also enjoy some German eats...notice my Dad's plate seems to be licked completely clean? Hmmm :) 3) Lori enjoys her vegetarian platter (Lori, I went with this one over the one of you with your mouth wide-open) ;) 4) Julie, my Mom, & my Dad...nice bunny ears, Mom! :)
Julie gets a visit from her pups! :)
Hi everyone! :) It's Julie's sister Laura again. Here are some more photos she asked me to put up. 1) Julie with her pups, 2) Julie with Guinness, 3) Julie with Jameson, 4) A double rainbow (look close & you can see there are 2, side by side!) Julie & her friend Susan noticed outside Julie's room one day.
Thursday, June 26, 2008
Gettin jiggy with it! :) :) :)
Hi everyone! :) It's Julie's sister, Laura. Here are some photos from our little in-room dance party from earlier today...enjoy! :) There's quite a mix, from the sprinkler to doin' the butt, to 'how low can you go'...finished off with a little hoola-hoopin'! :) Good times. Julie, I'm not as computer savvy as you and it took forever to upload these. Not sure if it's my computer, or me...probably the latter! ;) Either way, I'm workin' on trying to get the other ones you wanted posted as well (you with the pups, the rainbow, etc.) I'll post them as soon as I can. Love you, putita! -Laurita xoxoxoxox
Dance party in 477
First of all, I just have to tell you how I'm addicted to an 80s song Laurel and Terry put on a CD for me...."Always" by Erasure. For whatever reason, it has me feelin' like I want to dance around, but I'm trying to get stuff done on the computer, so I've relegated the dancing to a little hospital bed shoulder shimmying and head bopping. Laura says I'm a great dancer. She especially likes it when I start to sing along....ok, the truth is that she actually asked me who the artist was, and I didn't know at the time, but apparently her quick response would have been "Let's leave it to them then"....hahahaha Oops the song stopped again, I have to repeat it...no wonder Laura's getting ready to leave. I'll wait 'til after she leaves to do the REAL dancing! I just hope my nurse doesn't walk in while I'm pulling out all my cool moves (and if you've seen me dance, you know I've got some moves! :) Just ask to see Maya and Brant's wedding photos or Lori's wedding video!) I'll offer dance lessons once the transplant is over and I'm healthy and ready to shake it.
Anyway, as you can sense from this entry, today is a good day. :) I've already done twenty laps!! WOOHOO!! Thanks, Pete and Laura! I also met with one of the reverends from my dad's church, and I really enjoyed talking to him. But Laura laughed at me after he left 'cause when he said a prayer, apparently I kept saying "amen" at the wrong times. Oh well, whatever gets us a laugh, even if it's inappropriate! :) Several people from my dad's church have stopped by, reverends as well as members of the church, and I've enjoyed getting the chance to chat with all of them.
If you've seen Laura's e-mail, you already know that I'm probably leaving here on Saturday to go home, and then sometime next week I'll head up to Boston (in my Yankees jersey and hat) to have an appointment with a doctor up there. I don't know if my dad and brother also plan on heading out to Seattle--we're just figuring things out as we go, but it sounds like I'll have a couple weeks at home before heading to wherever I'm heading for the transplant. It'll be nice to be home, and lots of you have said you'll come visit, so I'm looking forward to that! ..............................................................................
Whew! I'm all tuckered out now (Lori, another of your favorite words)!! Laura and I just had a full-blown dance party in Room 477. And yup, we danced to the same song over and over! Thanks, Laurel and Terry!!! We did a photo shoot of the dancin' so Laura will put that on the blog sometime tonight or tomorrow, along with the dog pics, some pics I took of the room and a beautiful double rainbow that Susan noticed outside my window! I know you can't wait to see all of them. :) Unfortunately, no nurses walked in during the dance party--it actually would have made it even more fun!!! :) This is your homework assignment after reading this blog: download "Always" by Erasure and dance around to it! You'll find it's quite addictive!! :)
Music can have such a powerful effect on our mood and emotions.
I was going to tell you all about my day yesterday 'cause I had some annoying things I had to get off my chest, but after dancing, everything seems so trivial! :) I just woke up feeling a little nauseous and blah, I cut my knuckle on the shower door, and it turned into a bloody (literally, not as in the British swear word) little mess...not that it was bleeding everywhere, but it just wouldn't stop bleeding, so that was annoying until I was able to get dressed and ask my nurse for a band-aid, so really it was no big deal at all, but since I felt blah, it felt like a big deal. I wanted to do my hair even though I felt yucky, so I sat down to dry it, and I actually pulled the chair over to the mirror to curl it. You're probably thinking, "Julie! You're in the hospital--no need to look especially nice!", but it makes me feel better. I'm not planning on searching for a date in the hospital :) , but I feel better about myself and I feel like I have more energy when I can fix my hair (plus I have to enjoy it while it lasts, right?!) Although I did joke with a friend that I should go on match.com in between now and my transplant to see if I can have a date before heading off to wherever I'm going! :) I'll just have to put in my info that although he can't get close to me, I can be a lot of fun to hang out with! :) hahahahaha Nah, I'll have to save the dating 'til a long time from now which makes me sad. Again, why am I so concerned about dating? But I worry about it. I mean, I'm 30 so my options already feel limited, but it will take a while for my hair to grow back (I know, I can use wigs :) ), and it will take a long time until I feel like myself again. It feels good to worry about something that is not medical though. :) Somehow I'll find a date once this crap is over! (have you noticed that "crap" and "suck" are my favorite words of late?) :) I'm looking forward to when I can go to "Murphy's" and sing along to some Irish songs while enjoying cider....not that I'll find a date there, but you never know. :)
After getting blood yesterday, I felt much better, and I did my laps (although I didn't start 'til around 5 PM). I walked outside my room in one of my cool outfits--pink knee socks, pink and white capris, and my cool "This is my cancer fighting shirt". The wife of the patient next door smiled and said "You brighten things!". :) So even though fashion gurus may think I'm silly and goofy looking, I can bring some joy to others and it makes me smile. That's all that matters, right? When I was out walking, I ran into onc of the therapy dogs (who happened to be on her way to visit me), so we did a lap and then came back to my room to cuddle. While we did our lap, we ran into the patient (not literally :) )I wrote about the other day, the one who was outside when Jameson and Guinness came. Anyway, it sounds like he's getting pet therapy now so I was very happy to hear that! I also had a visit from a yellow lab earlier in the day. I was napping, but one of the nurses told the owner that I always wanted dog visitors so it was fine to enter. I sat up immediately, of course, and had a wonderful visit with him! Let's see...what else...I was disconnected from my pole buddy for most of my laps yesterday, and I passed one patient who was walking with his wife, and as I passed them (I pass everybody :) ), I said "hi". I heard him say to his wife "Do you think she's a patient or does she work here?" I couldn't help but smile when I heard that...glad I look well enough to be an employee! Guess walking around with a mask and gloves isn't enough to identify me as a patient 'cause the staff has to do that too. Anyway, it cracked me up.
Speaking of cracking up, Rachel brought a DVD of Jim Gaffigan the other day, and it is really funny. I highly recommend it: "Beyond the Pale" (Jim Gaffigan). Check it out and let me know what you think! And speaking of comedians, Katie's friend Jesse got me a cool book (autographed too!!) by Robert Schimmel called "Cancer on $5 a day, *chemo not included"...I haven't had the chance to read it, but I've looked over it and it looks really funny. It takes talent to make recounting your cancer experience as something funny!
OK, well I'm gonna go rest my tired dancin' legs. Laura, Tiso, my mom and dad have some surprise planned for tonight, and I want to be able to enjoy it and not feel exhausted. I'll let you know what the surprise is manana.
Hope everyone is doing well....don't forget to watch "My Boys" tonight on TBS!--9 PM, I love that show, and Jim Gaffigan is actually an actor in it.
Two more days and counting....I'll miss the routine I've created here (oddly enough), but I'll just keep creating new routines, and somehow I'll make it through everything. :)
Love ya.
Anyway, as you can sense from this entry, today is a good day. :) I've already done twenty laps!! WOOHOO!! Thanks, Pete and Laura! I also met with one of the reverends from my dad's church, and I really enjoyed talking to him. But Laura laughed at me after he left 'cause when he said a prayer, apparently I kept saying "amen" at the wrong times. Oh well, whatever gets us a laugh, even if it's inappropriate! :) Several people from my dad's church have stopped by, reverends as well as members of the church, and I've enjoyed getting the chance to chat with all of them.
If you've seen Laura's e-mail, you already know that I'm probably leaving here on Saturday to go home, and then sometime next week I'll head up to Boston (in my Yankees jersey and hat) to have an appointment with a doctor up there. I don't know if my dad and brother also plan on heading out to Seattle--we're just figuring things out as we go, but it sounds like I'll have a couple weeks at home before heading to wherever I'm heading for the transplant. It'll be nice to be home, and lots of you have said you'll come visit, so I'm looking forward to that! ..............................................................................
Whew! I'm all tuckered out now (Lori, another of your favorite words)!! Laura and I just had a full-blown dance party in Room 477. And yup, we danced to the same song over and over! Thanks, Laurel and Terry!!! We did a photo shoot of the dancin' so Laura will put that on the blog sometime tonight or tomorrow, along with the dog pics, some pics I took of the room and a beautiful double rainbow that Susan noticed outside my window! I know you can't wait to see all of them. :) Unfortunately, no nurses walked in during the dance party--it actually would have made it even more fun!!! :) This is your homework assignment after reading this blog: download "Always" by Erasure and dance around to it! You'll find it's quite addictive!! :)
Music can have such a powerful effect on our mood and emotions.
I was going to tell you all about my day yesterday 'cause I had some annoying things I had to get off my chest, but after dancing, everything seems so trivial! :) I just woke up feeling a little nauseous and blah, I cut my knuckle on the shower door, and it turned into a bloody (literally, not as in the British swear word) little mess...not that it was bleeding everywhere, but it just wouldn't stop bleeding, so that was annoying until I was able to get dressed and ask my nurse for a band-aid, so really it was no big deal at all, but since I felt blah, it felt like a big deal. I wanted to do my hair even though I felt yucky, so I sat down to dry it, and I actually pulled the chair over to the mirror to curl it. You're probably thinking, "Julie! You're in the hospital--no need to look especially nice!", but it makes me feel better. I'm not planning on searching for a date in the hospital :) , but I feel better about myself and I feel like I have more energy when I can fix my hair (plus I have to enjoy it while it lasts, right?!) Although I did joke with a friend that I should go on match.com in between now and my transplant to see if I can have a date before heading off to wherever I'm going! :) I'll just have to put in my info that although he can't get close to me, I can be a lot of fun to hang out with! :) hahahahaha Nah, I'll have to save the dating 'til a long time from now which makes me sad. Again, why am I so concerned about dating? But I worry about it. I mean, I'm 30 so my options already feel limited, but it will take a while for my hair to grow back (I know, I can use wigs :) ), and it will take a long time until I feel like myself again. It feels good to worry about something that is not medical though. :) Somehow I'll find a date once this crap is over! (have you noticed that "crap" and "suck" are my favorite words of late?) :) I'm looking forward to when I can go to "Murphy's" and sing along to some Irish songs while enjoying cider....not that I'll find a date there, but you never know. :)
After getting blood yesterday, I felt much better, and I did my laps (although I didn't start 'til around 5 PM). I walked outside my room in one of my cool outfits--pink knee socks, pink and white capris, and my cool "This is my cancer fighting shirt". The wife of the patient next door smiled and said "You brighten things!". :) So even though fashion gurus may think I'm silly and goofy looking, I can bring some joy to others and it makes me smile. That's all that matters, right? When I was out walking, I ran into onc of the therapy dogs (who happened to be on her way to visit me), so we did a lap and then came back to my room to cuddle. While we did our lap, we ran into the patient (not literally :) )I wrote about the other day, the one who was outside when Jameson and Guinness came. Anyway, it sounds like he's getting pet therapy now so I was very happy to hear that! I also had a visit from a yellow lab earlier in the day. I was napping, but one of the nurses told the owner that I always wanted dog visitors so it was fine to enter. I sat up immediately, of course, and had a wonderful visit with him! Let's see...what else...I was disconnected from my pole buddy for most of my laps yesterday, and I passed one patient who was walking with his wife, and as I passed them (I pass everybody :) ), I said "hi". I heard him say to his wife "Do you think she's a patient or does she work here?" I couldn't help but smile when I heard that...glad I look well enough to be an employee! Guess walking around with a mask and gloves isn't enough to identify me as a patient 'cause the staff has to do that too. Anyway, it cracked me up.
Speaking of cracking up, Rachel brought a DVD of Jim Gaffigan the other day, and it is really funny. I highly recommend it: "Beyond the Pale" (Jim Gaffigan). Check it out and let me know what you think! And speaking of comedians, Katie's friend Jesse got me a cool book (autographed too!!) by Robert Schimmel called "Cancer on $5 a day, *chemo not included"...I haven't had the chance to read it, but I've looked over it and it looks really funny. It takes talent to make recounting your cancer experience as something funny!
OK, well I'm gonna go rest my tired dancin' legs. Laura, Tiso, my mom and dad have some surprise planned for tonight, and I want to be able to enjoy it and not feel exhausted. I'll let you know what the surprise is manana.
Hope everyone is doing well....don't forget to watch "My Boys" tonight on TBS!--9 PM, I love that show, and Jim Gaffigan is actually an actor in it.
Two more days and counting....I'll miss the routine I've created here (oddly enough), but I'll just keep creating new routines, and somehow I'll make it through everything. :)
Love ya.
Wednesday, June 25, 2008
Going Home Soon
Yup, you read the title right! My doctor just came in and told me they would probably release me (geez...that makes it sound like I'm in a mental hospital or something!) Friday or Saturday. Hearing this kind of made me sad, which I know must sound totally strange to all of you. But here's my line of thinking: Leaving here means leaving all my wonderful visitors. I don't think you can really comprehend how much your visits mean to me. I've been able to see friends and family I haven't seen in a while, and I've met many new and wonderful people. You are such a huge part of the healing process for me, so I'm getting scared about what lies ahead. You know, it's the second time I've ordered oatmeal, and here I am crying over it again....no more oatmeal for me!!! :) Seriously though, I guess the reality is setting in: no more "parties" in my room, no more Wii competitions, no more catching up with everyone while doing my laps. I know it sounds weird, but I've had a lot of fun since being in the hospital, essentially because I've felt so well and never had much time to sit around and worry about the future, because you all made sure to stop by and keep me laughing. So now I'll be headed home (and I can't wait to see my pups! :)), but I will be responsible for all my dressing and Hickman catheter care (not that it's a big deal, but it's always nice to defer to the nurses). I will head to the doctor every day to get my Neupogen shots, and to the hospital infusion clinic for blood and platelets when necessary. I will visit Boston to be evaluated by their doctors. I think my brother and dad are going out to Seattle at some point. Then a decision will be made, and I will leave everything here for at least 3 months. That means leaving all of you, my pups, and everything that has become familiar about this whole medical process. Even if I can have all these wonderful decorations in my room wherever I go, it will not be the same. I'm terrified, and somehow I feel lonely even knowing that I have an incredible support system.
I know there are lots of positives for leaving the hospital too: getting away from other sick patients who may have something contagious; I'll be home with my family (when I say family, my pups and kitty are included!:) ); I get my own bed back; I can walk outside to do my "laps", although I'll still sport my cool mask. :); obviously the doctors think I'm doing well enough to leave which is important...the list could go on. I just want to make sure you know that I know it is a positive move to make, but I just wanted to be honest about my feelings and tell you that I'm really, really scared.
I know that once I get up or over to wherever I end up for the transplant, I'll develop some sort of routine and I'll find a way to fill in the days (I have lots of books and magazines to read! :) ), and I know I'll meet kind nurses and doctors along the way, but anyone who knows me knows I'm not so good with change, and you probably know how much I feed off the energy, humor and laughter of others. I know I'll be OK...I'm being so dramatic here, letting teardrops fall onto the laptop (they won't hurt it, will they? :) ). No worries...I will adjust to whatever is ahead, and I will keep staying positive, but at this juncture and in this moment, I don't know what to expect. I will miss everyone so much (I know it's only 3 months, but like I said, I'm dramatic :) ). All I can say is they better have good Internet access wherever I end up!! That can be my lifeline.
It seems that I need a good quote to lift me out of this minor little depression: "When you come to a fork in the road, take it"...how bout that one? 'Cause it's not like I have any choice here, right? I'm at a metaphorical crossroads, if you will (Lori, look, I got to incorporate our favorite phrase into the blog! :) ---we love "if you will"--kind of snooty sounding, but often appropriate in conversation). I have no option to retreat, and I certainly have no concept of what awaits me. Technically "crossroads" implies some sort of important decision being made, and I guess in this case it would be the decision to leave friends and family behind in order to do my transplant at a well-known and respected transplant center. It's going to suck, we all know that, but I can't do anything to change it; otherwise I would have kindly asked the leukemia not to come back in the first place.
So anyway, there you have it. I'm going to finish my oatmeal now, take a shower, do some laps and regroup. :) I probably have some more tears waiting to come out, but I find those helpful also. My nurse today is one of my favorites. I haven't seen her since 2005, but she remembers me (of course....how could you forget me?!), so it's nice to have such a familiar face, especially when I'm feeling like I am right now. So I'm all good--just a little emotional today. I'm going to get some blood, so who knows how I'll feel later? We like to joke and say that it would be funny if I took on the characteristics of whoever's blood it was. I'll just hope for a really jolly, happy-go-lucky donor today....first I'll get some more tears out, then I'll be ready to look at everything with a better perspective.
I know in my heart that lots of good and happy things await me in the future, and I need to focus on those to get through the transplant. Don't worry--I'll find a way to do it!! :)
And thanks for making an almost month-long stay in the hospital feel so short and be so much fun.
Love ya.
I know there are lots of positives for leaving the hospital too: getting away from other sick patients who may have something contagious; I'll be home with my family (when I say family, my pups and kitty are included!:) ); I get my own bed back; I can walk outside to do my "laps", although I'll still sport my cool mask. :); obviously the doctors think I'm doing well enough to leave which is important...the list could go on. I just want to make sure you know that I know it is a positive move to make, but I just wanted to be honest about my feelings and tell you that I'm really, really scared.
I know that once I get up or over to wherever I end up for the transplant, I'll develop some sort of routine and I'll find a way to fill in the days (I have lots of books and magazines to read! :) ), and I know I'll meet kind nurses and doctors along the way, but anyone who knows me knows I'm not so good with change, and you probably know how much I feed off the energy, humor and laughter of others. I know I'll be OK...I'm being so dramatic here, letting teardrops fall onto the laptop (they won't hurt it, will they? :) ). No worries...I will adjust to whatever is ahead, and I will keep staying positive, but at this juncture and in this moment, I don't know what to expect. I will miss everyone so much (I know it's only 3 months, but like I said, I'm dramatic :) ). All I can say is they better have good Internet access wherever I end up!! That can be my lifeline.
It seems that I need a good quote to lift me out of this minor little depression: "When you come to a fork in the road, take it"...how bout that one? 'Cause it's not like I have any choice here, right? I'm at a metaphorical crossroads, if you will (Lori, look, I got to incorporate our favorite phrase into the blog! :) ---we love "if you will"--kind of snooty sounding, but often appropriate in conversation). I have no option to retreat, and I certainly have no concept of what awaits me. Technically "crossroads" implies some sort of important decision being made, and I guess in this case it would be the decision to leave friends and family behind in order to do my transplant at a well-known and respected transplant center. It's going to suck, we all know that, but I can't do anything to change it; otherwise I would have kindly asked the leukemia not to come back in the first place.
So anyway, there you have it. I'm going to finish my oatmeal now, take a shower, do some laps and regroup. :) I probably have some more tears waiting to come out, but I find those helpful also. My nurse today is one of my favorites. I haven't seen her since 2005, but she remembers me (of course....how could you forget me?!), so it's nice to have such a familiar face, especially when I'm feeling like I am right now. So I'm all good--just a little emotional today. I'm going to get some blood, so who knows how I'll feel later? We like to joke and say that it would be funny if I took on the characteristics of whoever's blood it was. I'll just hope for a really jolly, happy-go-lucky donor today....first I'll get some more tears out, then I'll be ready to look at everything with a better perspective.
I know in my heart that lots of good and happy things await me in the future, and I need to focus on those to get through the transplant. Don't worry--I'll find a way to do it!! :)
And thanks for making an almost month-long stay in the hospital feel so short and be so much fun.
Love ya.
Tuesday, June 24, 2008
Whatup
Well, thanks a lot, Katie!!! :) I'm sitting here crying like a baby reading the book you made Dad for Father's Day. For those who haven't seen it, it's a beautiful album with photos and comments Katie wrote, in which she references traits or qualities my dad possesses, and explains what each has meant to her. Katie, it is wonderful. You are such a talented writer, and the photos and stories you included just fit perfectly!!! Here's my favorite part (you're writing about the importance of family for Dad---where'd you steal this from?!! hahahahaha): "His love and value for his family is what makes us who we are today. I feel strong enough to be curious, trusting enough to love, and happy enough to thrive, all because of my family". How eloquently put and how very true. We are, indeed, lucky to have the family we have, and also the friends we have added to our family.
You know what? I think this will be the blog where I steal other people's quotes and comment on them. I have never been too proud to steal others' quotes (ok, I give them credit, so it's not stealing). I used to sit in English and Creative Writing classes and hear the teacher talk about the importance of creating your own unique vision of something, and not relying on the words of others to fill in your papers. Well, I'm here to say that I'm NOT too proud to use some good quotes! After all, I think sometimes someone has already said whatever needs to be said at a given moment, and often they have said it better! So, here goes...some of my favorite quotes for you to ponder:
"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can." - Edward Everett Hale
"Sing like no one can hear you. Dance like no one can see you (everyone knows I do this!--that's not part of the quote ;)). Love like you'll never get hurt." - modified Mark Twain quote (I've seen it written several different ways and this way is my favorite)
"True courage is like a kite; a contrary wind raises it higher" - John Petit-Senn
"Courage is being scared to death and saddling up anyway." - John Wayne
"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow." - Orison Swett Marden
"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." - Mark Twain
(My cousin, Laurel, included these last two quotes in a beautiful photo album she made for me when I was diagnosed in '05. I brought it to the hospital, Laurel, and I love looking at it!!! :) The second quote was also included in yet another beautiful album that Catherine made me with messages from friends and family, and some of the following quotes are also from that album. Both albums are here, and I've really enjoyed looking over them, as have visitors. I have looked at them lots since you first gave them to me, and I am always touched by the effort and love you put into them. So I just want to say thank you again--they mean a lot, and they make me smile and laugh when I start feeling tired.)
"No matter where you sit in New York, you feel the vibrations of great times and tall deeds, of cheerful people and events and undertakings." - E.B. White (Just wishing I were sitting in NY at a Yankees game or at a sidewalk cafe people-watching...I will get back up there when this crap is over! And if I end up in Boston for the transplant, I'm really looking forward to being a Yankees fan in Red Sox territory. :) )
"Enjoy together those moments of life that are utterly simple." - Rev. Martin Luther King, Jr. (they are indeed the best! We just don't always realize it 'til later. :) )
"I hope you still feel small when you stand beside the ocean. When one door closes, I hope one more opens. Promise me that you'll give faith a fighting chance and when you get the choice to sit it out or dance, I hope you dance." - Lee Ann Womack (because sometimes song lyrics say it best! ;) )
"Shoot for the moon and if you miss you will still be among the stars." - Les Brown
"The world is before you, and you need not take it or leave it as it was when you came in." - James Baldwin
Sorry if you guys are getting sick of these quotes---I'm really on a roll here!!!!! :) hahahaha OK, just two more things. The first one is one of my very favorite poems, and the second one is actually from my flower shop days. We often got interesting cards, but this one stuck with me, and makes me laugh every time I think about it. I wish I knew more about the story!!
"Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is not." - Henry Van Dyke (I've seen slightly altered versions of this, but again, this one is my favorite.)
"We apologize for your extended elevator entrapment." - unkown flower sender :) (makes you wonder what happened, right?!!! I should have called the recipient and asked for some more details!)
I lied...here are a couple more I just have to add! Classics. :) You know what, if you're sick of reading them, you can just click off the blog now! =) These quotes all make me smile---they either rev me up so I feel like I'm strong and can face anything, or they make me reflective so I better understand the big picture.
"Adopt the pace of nature: her secret is patience." - Ralph Waldo Emerson
"I have learned that to be with those I like is enough." - Walt Whitman
"Keep your face always toward the sunshine - and shadows will fall behind you." - Walt Whitman
"Life is short, and the world is wide." - Simon Raven (and I definitely plan on doing some traveling once this crap is over!!---oh, and once I find a job and make some money to pay for it!!--Ireland is at the top of the list, then Hawaii) And finally, one of my favorites---it can be either superdeep or really silly, depending on how you choose to read it :) : "When you come to a fork in the road, take it." - Yogi Berra
Well, that's it for "Julie's favorite quotes!" Katie, thanks for inspiring me to write this blog! It is a really special album, and I know Dad was very touched.
I know, you're probably thinking "Is she STILL writing?!" :) You want an update on my day, don't you? So here it is: I've done 8 laps so far. I've been disconnected from my pole buddy for half the day because my nurse said I was receiving fluids at a low rate, and I'm able to drink liquids. I feel weird sitting here without anything hooked up to me; kind of feel like I should be at home. I mean, I know my counts are low, but they were this low when I did my consolidation chemos (the chemos you do following your induction, or first, chemo for leukemia) and I was at home. I just went back and forth to the doctor every day. I know they need to keep an eye on me, and that I'll need more platelets and blood, but part of me is thinking "Get me outta here!" The only good thing about being here is that it's a central location, so it's more convenient for my visitors, and I definitely want the visits to keep comin'!!! You guys keep me going. Anyhoo, I'm here and that's how it is, so I'll just be patient a little longer!! Oh! I know the good news! I have .1 neutrophils today!!! Woohoo!!! Things are looking up! I'll do some more visualization and some more Wii ski jumping and I'm sure they will be up in no time.
OK, the superlengthy blog entry is now coming to an end...no tears, please. I'll be back. :) Anyone have any favorite quotes to share?
You know what? I think this will be the blog where I steal other people's quotes and comment on them. I have never been too proud to steal others' quotes (ok, I give them credit, so it's not stealing). I used to sit in English and Creative Writing classes and hear the teacher talk about the importance of creating your own unique vision of something, and not relying on the words of others to fill in your papers. Well, I'm here to say that I'm NOT too proud to use some good quotes! After all, I think sometimes someone has already said whatever needs to be said at a given moment, and often they have said it better! So, here goes...some of my favorite quotes for you to ponder:
"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can." - Edward Everett Hale
"Sing like no one can hear you. Dance like no one can see you (everyone knows I do this!--that's not part of the quote ;)). Love like you'll never get hurt." - modified Mark Twain quote (I've seen it written several different ways and this way is my favorite)
"True courage is like a kite; a contrary wind raises it higher" - John Petit-Senn
"Courage is being scared to death and saddling up anyway." - John Wayne
"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow." - Orison Swett Marden
"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." - Mark Twain
(My cousin, Laurel, included these last two quotes in a beautiful photo album she made for me when I was diagnosed in '05. I brought it to the hospital, Laurel, and I love looking at it!!! :) The second quote was also included in yet another beautiful album that Catherine made me with messages from friends and family, and some of the following quotes are also from that album. Both albums are here, and I've really enjoyed looking over them, as have visitors. I have looked at them lots since you first gave them to me, and I am always touched by the effort and love you put into them. So I just want to say thank you again--they mean a lot, and they make me smile and laugh when I start feeling tired.)
"No matter where you sit in New York, you feel the vibrations of great times and tall deeds, of cheerful people and events and undertakings." - E.B. White (Just wishing I were sitting in NY at a Yankees game or at a sidewalk cafe people-watching...I will get back up there when this crap is over! And if I end up in Boston for the transplant, I'm really looking forward to being a Yankees fan in Red Sox territory. :) )
"Enjoy together those moments of life that are utterly simple." - Rev. Martin Luther King, Jr. (they are indeed the best! We just don't always realize it 'til later. :) )
"I hope you still feel small when you stand beside the ocean. When one door closes, I hope one more opens. Promise me that you'll give faith a fighting chance and when you get the choice to sit it out or dance, I hope you dance." - Lee Ann Womack (because sometimes song lyrics say it best! ;) )
"Shoot for the moon and if you miss you will still be among the stars." - Les Brown
"The world is before you, and you need not take it or leave it as it was when you came in." - James Baldwin
Sorry if you guys are getting sick of these quotes---I'm really on a roll here!!!!! :) hahahaha OK, just two more things. The first one is one of my very favorite poems, and the second one is actually from my flower shop days. We often got interesting cards, but this one stuck with me, and makes me laugh every time I think about it. I wish I knew more about the story!!
"Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is not." - Henry Van Dyke (I've seen slightly altered versions of this, but again, this one is my favorite.)
"We apologize for your extended elevator entrapment." - unkown flower sender :) (makes you wonder what happened, right?!!! I should have called the recipient and asked for some more details!)
I lied...here are a couple more I just have to add! Classics. :) You know what, if you're sick of reading them, you can just click off the blog now! =) These quotes all make me smile---they either rev me up so I feel like I'm strong and can face anything, or they make me reflective so I better understand the big picture.
"Adopt the pace of nature: her secret is patience." - Ralph Waldo Emerson
"I have learned that to be with those I like is enough." - Walt Whitman
"Keep your face always toward the sunshine - and shadows will fall behind you." - Walt Whitman
"Life is short, and the world is wide." - Simon Raven (and I definitely plan on doing some traveling once this crap is over!!---oh, and once I find a job and make some money to pay for it!!--Ireland is at the top of the list, then Hawaii) And finally, one of my favorites---it can be either superdeep or really silly, depending on how you choose to read it :) : "When you come to a fork in the road, take it." - Yogi Berra
Well, that's it for "Julie's favorite quotes!" Katie, thanks for inspiring me to write this blog! It is a really special album, and I know Dad was very touched.
I know, you're probably thinking "Is she STILL writing?!" :) You want an update on my day, don't you? So here it is: I've done 8 laps so far. I've been disconnected from my pole buddy for half the day because my nurse said I was receiving fluids at a low rate, and I'm able to drink liquids. I feel weird sitting here without anything hooked up to me; kind of feel like I should be at home. I mean, I know my counts are low, but they were this low when I did my consolidation chemos (the chemos you do following your induction, or first, chemo for leukemia) and I was at home. I just went back and forth to the doctor every day. I know they need to keep an eye on me, and that I'll need more platelets and blood, but part of me is thinking "Get me outta here!" The only good thing about being here is that it's a central location, so it's more convenient for my visitors, and I definitely want the visits to keep comin'!!! You guys keep me going. Anyhoo, I'm here and that's how it is, so I'll just be patient a little longer!! Oh! I know the good news! I have .1 neutrophils today!!! Woohoo!!! Things are looking up! I'll do some more visualization and some more Wii ski jumping and I'm sure they will be up in no time.
OK, the superlengthy blog entry is now coming to an end...no tears, please. I'll be back. :) Anyone have any favorite quotes to share?
Monday, June 23, 2008
Thanks, Paloma!
Hola, hope everyone's enjoying their Monday. I've been enjoying mine, and I'm just getting ready to go do some laps. First I wanted to thank you, Paloma, for posting those photos! You're so right about that fashion trend spreading...pretty soon everyone will want the look, mask included. :) I did want to clarify though that I didn't design the last shirt (the shirt my young adult cancer support group wore to Relay for Life this year); to get technical, I wrote it, but Lizz from our group designed it, so I want to make sure she gets the credit!!! :) In case you can't read it, it says: "We support each other. We share our concerns, our challenges, our joys. We cry and we laugh together. Cancer is our common bond and together we will relay to "CELEBRATE" health, to "REMEMBER" friends and family we lost and to "FIGHT BACK" against a disease that attacked our bodies but never tarnished our spirit. We are the Young and the Restless." The theme for Relay this year was "Celebrate, Remember and Fight Back", which explains the caps and quotes. I'll write more later...just got my labs...no neutrophils yet, but my doctor told me yesterday that it's physically impossible for them to come up before day 21, and I'm at day 18. I'll have to do some hardcore visualization! But first, I'm off to do some laps. Hope everyone's doing well! And thanks again, Paloma! ¡¡¡Muchísimas gracias!!!
Guest blogger/picture taker!
Hello everyone! This is Julie's friend Paloma (she learned alot of her Spanish from me).
I visited Julie last week in the morning (I really love her so I endured 95 and 495 and scary uncaffeinated people at Starbucks just to wake her up). I thought I would share some of the pictures that I took of her.
Even through cancer Julie still manages to maintain her avant-garde (is that how you spell it?) and cutting edge fashion. Seriouly, soon enough you will see Paris Hilton and Nicole Richie wanting to copy this pink and black socks with duckie slippers look.
See:
She even models!
Below is Julie doing her laps. Sorry the picture is blurry, but that girl is FAST! We only did 3 when I was with her cause I kept making her pose for pictures.
Julie and her favorite Argentinian. (Jules, if you know another Argentinian, please let them know before they read this blog that I am your favorite, otherwise they may be shocked - we have a little bit of an ego, us Argentinians).
Finally I leave you with a close up of Julie's shirt that she herself designed.
I visited Julie last week in the morning (I really love her so I endured 95 and 495 and scary uncaffeinated people at Starbucks just to wake her up). I thought I would share some of the pictures that I took of her.
Even through cancer Julie still manages to maintain her avant-garde (is that how you spell it?) and cutting edge fashion. Seriouly, soon enough you will see Paris Hilton and Nicole Richie wanting to copy this pink and black socks with duckie slippers look.
See:
She even models!
Below is Julie doing her laps. Sorry the picture is blurry, but that girl is FAST! We only did 3 when I was with her cause I kept making her pose for pictures.
Julie and her favorite Argentinian. (Jules, if you know another Argentinian, please let them know before they read this blog that I am your favorite, otherwise they may be shocked - we have a little bit of an ego, us Argentinians).
Finally I leave you with a close up of Julie's shirt that she herself designed.
Sunday, June 22, 2008
A Quiet Sunday
¿Cómo están todos? Bien, I hope. :) It's been a pretty quiet Sunday here, except for one verrrrrry exciting event this morning......drum roll, please!! My doctor told me yesterday that I could walk to the other floors in the evening to get some exercise, so I asked him if I could walk outside to see my dogs if someone brought them to the front of the hospital for me. Anyway, yesterday he said he knew I would ask that, but he thought it wasn't a good idea....this morning though he said as an early X-mas present, I was allowed to do just that!!! So around 11 or so, Ronnie and Kathy brought Jamie and Guinny over, I donned my mask and gloves, some real shoes (as opposed to my usual slippers) and walked outside for the first time in just over two weeks! They were excited, as was I, and we hung out in the little gazebo for a long time. I have lots of pictures, but you'll have to wait with baited breath 'til Katie comes home next time so she can upload them. :)
We were sitting out there with another patient from my floor (a young guy, maybe in his 40s) who I didn't know, but he really enjoyed seeing the dogs and talking to us. He is also an oncology patient, and he is all alone in the area. Although it's probably not a good idea for me to be going around visiting people, my mom asked the nurses if they thought it would be OK if she visited him, and they thought it was a great idea. It got me to thinking again how incredibly lucky I am, because I can't imagine going through this alone. I hope I see him out in the hall sometime to say hello again. We mentioned pet therapy to the nurses, and they thought it would be a good idea for him. I was so relieved Jameson didn't bark at him! Usually he barks at any man (why?--I don't know! He's a mama's boy!), but he went right over to the patient and let him pet him. Dogs just have a sense when something's wrong and when someone needs to be comforted, I am totally and completely convinced of this. Thinking of this patient sitting alone in his room really upsets me, and I hope my mom does get the chance to visit him. It might sound strange, but it feels good to shed some tears for someone else, to help take the focus off myself. I hope somehow we can make a difference in this man's life, whether it be saying hi in the hall, a visit from my mom, or referring him to pet therapy. So here's time for some more "deep thoughts with Julie": after my first diagnosis of leukemia, I often thought about what kind of legacy I would want to leave whenever I die, whether I'm young or old. Morbid-sounding, yes, but as I've written before, the thought of death enters your mind much more often after such a serious illness. I of course thought, "well, I hope I'm really old when it happens!; I hope I will have spent many years with a man I was totally in love with; I hope I raised and spent lots of time having fun with my children (at least 3) :); I hope I was able to be there for my friends and family, and that we enjoyed every moment we could; I hope everyone knew how much I loved them; I hope I worked hard at a job that allowed me to help others in some way (I'm still trying to figure out what that job is!)." Then I really thought about it harder, and I realized that although all of these wishes would be ideal, what is most important is that I do my best in life to bring some joy to the lives of others...whatever else I accomplish can be considered a plus. You automatically bring yourself joy by doing that, and I figured out that it was a pretty easy goal to accomplish. God, I sound sooooo totally cheesy and Pollyana-ish, but I'm just baring my soul to you anyway, so I figured I'd put it out there! Anyway, I guess it's this whole line of thinking that has me thinking so much about this other patient.
OK, enough over-the-top preaching. :) I have another cool (and funny!) story from this morning. I was half-awake at 7:30 or so, and I noticed a new blanket was at the foot of my bed covering my feet...."hmmmm", I thought...."Where did that come from? I know I'm taking Ativan, but it doesn't make me crazy or anything! Who put this blanket here?" I asked my nurse when she came in, but she didn't know. I called my mom, and she didn't know either. I figured there was some blanket-giving ghost out there. Then one of my favorite nursing assistants came in and asked if I liked my surprise. She made me a beautiful, cheery blanket! It's fleece, with very summery colors, and she sewed on a red sash (I don't know the technical sewing term for it :) ) at the top. A couple days ago she told me my brown blanket didn't match my happy, colorful room, so she decided to fix that. I was really touched. I'll put pics up so you can see it (again, you'll have to wait for Katie to come home!).
Let's see...what else. my scalp is still itchy and red and annnnnnoying, but I'm doing my best not to scratch it. I have 11 laps left to go today, so I think I might do that before some friends come over to watch a movie.
Hope everyone enjoyed their weekend!
We were sitting out there with another patient from my floor (a young guy, maybe in his 40s) who I didn't know, but he really enjoyed seeing the dogs and talking to us. He is also an oncology patient, and he is all alone in the area. Although it's probably not a good idea for me to be going around visiting people, my mom asked the nurses if they thought it would be OK if she visited him, and they thought it was a great idea. It got me to thinking again how incredibly lucky I am, because I can't imagine going through this alone. I hope I see him out in the hall sometime to say hello again. We mentioned pet therapy to the nurses, and they thought it would be a good idea for him. I was so relieved Jameson didn't bark at him! Usually he barks at any man (why?--I don't know! He's a mama's boy!), but he went right over to the patient and let him pet him. Dogs just have a sense when something's wrong and when someone needs to be comforted, I am totally and completely convinced of this. Thinking of this patient sitting alone in his room really upsets me, and I hope my mom does get the chance to visit him. It might sound strange, but it feels good to shed some tears for someone else, to help take the focus off myself. I hope somehow we can make a difference in this man's life, whether it be saying hi in the hall, a visit from my mom, or referring him to pet therapy. So here's time for some more "deep thoughts with Julie": after my first diagnosis of leukemia, I often thought about what kind of legacy I would want to leave whenever I die, whether I'm young or old. Morbid-sounding, yes, but as I've written before, the thought of death enters your mind much more often after such a serious illness. I of course thought, "well, I hope I'm really old when it happens!; I hope I will have spent many years with a man I was totally in love with; I hope I raised and spent lots of time having fun with my children (at least 3) :); I hope I was able to be there for my friends and family, and that we enjoyed every moment we could; I hope everyone knew how much I loved them; I hope I worked hard at a job that allowed me to help others in some way (I'm still trying to figure out what that job is!)." Then I really thought about it harder, and I realized that although all of these wishes would be ideal, what is most important is that I do my best in life to bring some joy to the lives of others...whatever else I accomplish can be considered a plus. You automatically bring yourself joy by doing that, and I figured out that it was a pretty easy goal to accomplish. God, I sound sooooo totally cheesy and Pollyana-ish, but I'm just baring my soul to you anyway, so I figured I'd put it out there! Anyway, I guess it's this whole line of thinking that has me thinking so much about this other patient.
OK, enough over-the-top preaching. :) I have another cool (and funny!) story from this morning. I was half-awake at 7:30 or so, and I noticed a new blanket was at the foot of my bed covering my feet...."hmmmm", I thought...."Where did that come from? I know I'm taking Ativan, but it doesn't make me crazy or anything! Who put this blanket here?" I asked my nurse when she came in, but she didn't know. I called my mom, and she didn't know either. I figured there was some blanket-giving ghost out there. Then one of my favorite nursing assistants came in and asked if I liked my surprise. She made me a beautiful, cheery blanket! It's fleece, with very summery colors, and she sewed on a red sash (I don't know the technical sewing term for it :) ) at the top. A couple days ago she told me my brown blanket didn't match my happy, colorful room, so she decided to fix that. I was really touched. I'll put pics up so you can see it (again, you'll have to wait for Katie to come home!).
Let's see...what else. my scalp is still itchy and red and annnnnnoying, but I'm doing my best not to scratch it. I have 11 laps left to go today, so I think I might do that before some friends come over to watch a movie.
Hope everyone enjoyed their weekend!
Saturday, June 21, 2008
Photos from Today
Thanks for putting those photos up, Ronnie!! Here are some captions: 1)Dad practices his bowling skills on Wii---he did very well and admitted the Wii would be really fun to play at home too!; 2)Ronnie pulls off an Elvis-looking move while playing tennis :); 3)Tiso and I---he brought me a yummy dinner too so I didn't have to eat the hospital food. :) Thanks, Tiso!!!; 4)Talking to the dogs on ichat--I can see them really well on my screen, but apparently my image at home is garbled because the hospital connection is slow, but they still hear my voice. It's good to be able to see them and tell them I didn't leave them, that I'll be back. :)
Enjoy!!
Enjoy!!
Hey there
Happy Saturday, everyone!
Hope you're enjoying your weekend. I had a great two days--lots of wonderful visitors, I did my 20 laps each day (or about 7,177 steps, according to my new pedometer), hung out with a cute therapy dog yesterday, played lots of Wii...the ski jump on the Wii fit is sooooo addictive! And I've discovered I'm a much more talented bowler on Wii than I am in real life...I'll have to practice once I'm allowed to go out in public again. :) I have decided that the Wii is a very rude machine though...the Wii fit calls you obese and estimates your age when you first register your character...well, it said my weight is normal, but my age is 45!!!!! What's up with that?! There was no extra button to click on that said "receiving chemo" so they could allow for that, or "leukemia patient" or anything. In fact, the Wii can't be that smart in general 'cause it said nothing about me having cancer! :) It was talking about what I could do to be healthier...too late for that!!!! hahahahaha
I'm feeling well...still have a bit of a sore throat and congestion, but the doctors say there's not much to do except wait it out. My neutrophils are 0, but I'm visualizing my white blood cells as cute little circles with top hats and canes jumping into my bloodstream, so hopefully that will help bring the count up soon!! In the meantime, I've developed some mouth sores, but they aren't hurting me (knock on wood!) I thought I had just bitten the inside of my cheek a couple times by accident, but one of my nurses said they were little blood blisters and they were one of the side effects of chemo. I didn't get these last go-round, and I'm very lucky they aren't hurting (toca madera again!) now. To help them, I use this stuff called "Magic Mouthwash"...it sounds like something happy and pleasant, right? WRONG! This stuff is nasty!!!! It's thick and creamy-looking and it just kind of coats your mouth, numbing it a little so you feel like you've been to the dentist. But if it helps, I'll do it!! Still, yuck!
Another annoying thing I have is a superitchy scalp. I think I overdid it with the scratching when my platelets were low because I have irritated red patches now. My doctor said there's not anything to put on it, so I'm just waiting it out. I haven't lost my hair yet, and there's always the possibility that I won't lose it 'cause not everyone does, so Laura, hang back with the shaving equipment!!! Don't worry...if I don't lose it with the high-dose Ara-C, I'll probably lose it with the Cytaxin. :) Honestly, if it's this itchy, I'd rather have it shaved. Everyone always told me I had a nicely-shaped head. :) Thank you to Kathy for bringing me the baby hairbrush and the gloves so I can soothe the itch without making it worse.
I had a nice visit with Tiso today and he made the good point that it must have been meant to be that the first bone marrow aspirate I had didn't have enough cells for my doctor to determine the leukemia was back (I had an aspirate just before we went to Seattle). That way, I was able to enjoy a trip with the whole family before being confined to the hospital and enduring the transplant process. I think he's definitely right because I felt good in Seattle and had a wonderful time--I was a little tired, but that was all. Somebody wanted to make sure I had a nice break before making me go through all this crap again. :)
Thank you, Katie, for all the pictures you brought! My room is even cheerier (if that's possible) now! I have to be honest though---the majority of pictures are of dogs so don't be offended anyone. I got to see my pups through an on-line chat yesterday and today, and they look cute and happy as always. They perked their ears up so I'm pretty sure they recognized my voice.
Let's see...what else? Not too much. I'm happy to report I think I'm the healthiest patient on this floor (knock on wood again!), which is good, but sometimes frustrating. OK, that sounds weird...let me explain: Everyone (nurses, docs, assistants) sees me doing my laps every day, they know I don't have any major complaints, I still have my hair, I shower and use the bathroom without assistance, I have lots of visitors and I'm always laughing and smiling (well, except for when I listen to the ocean and start crying over my oatmeal :) )...anyway, basically, I AM healthy, except for the leukemia that USED to be in my body (I need to remember to talk about it in the past tense because I believe the cancerous cells are gone now, although I won't know until they do a bone marrow). So they see me looking so good (in health terms, not in beauty terms...after all, I'm not allowed to pluck my eyebrows or wear makeup and now my hair will have to suffer too because of my scalp--no more fancy hair products!--not that it's important, but it's nice to fix my hair while I have it)...so as I was saying, they see me looking good, and sometimes I feel like they put me at the bottom of their list. My nurse during the day today told me they were really busy so I would be her "poor, neglected patient" today....I know what she meant by it, but it still got me to thinking: "Hey! I am still a cancer patient here!" I understand the job of a nurse is very difficult (after all, my mom was a nurse!), but I think no matter how sick a patient appears to be, you should at least make each one feel as important as the other. Some of my nurses do this, so it's not really a big deal, but it's something that was on my mind so I figured I'd share it with you. Personally, I'm really glad to be the best one on the block, and I sure hope it stays that way!!
I heard my parents received lots of yummy food today (and they brought me some deeelicious samosas--thank you to the Sethis!!!), and I want to thank my neighbors for that! It amazes me how everyone (not only my neighbors, but everyone I know) pulls together, and I feel like I have this gigantic support network. Knowing that makes my fight against this nasty disease feel a whole lot easier, and I thank all of you. I said (well, technically, I wrote :) ) it before, but thank you for your visits, your calls, your cards, balloons, food, e-mails (I'm still catching up on writing back, but I love reading them!), well wishes. Just know that I'm feeling well, I'm fighting hard, and I'm thinking positively. Thanks for helping me along through this crappy situation again (wow, that's poetic, huh?!) :)
Love ya.
Hope you're enjoying your weekend. I had a great two days--lots of wonderful visitors, I did my 20 laps each day (or about 7,177 steps, according to my new pedometer), hung out with a cute therapy dog yesterday, played lots of Wii...the ski jump on the Wii fit is sooooo addictive! And I've discovered I'm a much more talented bowler on Wii than I am in real life...I'll have to practice once I'm allowed to go out in public again. :) I have decided that the Wii is a very rude machine though...the Wii fit calls you obese and estimates your age when you first register your character...well, it said my weight is normal, but my age is 45!!!!! What's up with that?! There was no extra button to click on that said "receiving chemo" so they could allow for that, or "leukemia patient" or anything. In fact, the Wii can't be that smart in general 'cause it said nothing about me having cancer! :) It was talking about what I could do to be healthier...too late for that!!!! hahahahaha
I'm feeling well...still have a bit of a sore throat and congestion, but the doctors say there's not much to do except wait it out. My neutrophils are 0, but I'm visualizing my white blood cells as cute little circles with top hats and canes jumping into my bloodstream, so hopefully that will help bring the count up soon!! In the meantime, I've developed some mouth sores, but they aren't hurting me (knock on wood!) I thought I had just bitten the inside of my cheek a couple times by accident, but one of my nurses said they were little blood blisters and they were one of the side effects of chemo. I didn't get these last go-round, and I'm very lucky they aren't hurting (toca madera again!) now. To help them, I use this stuff called "Magic Mouthwash"...it sounds like something happy and pleasant, right? WRONG! This stuff is nasty!!!! It's thick and creamy-looking and it just kind of coats your mouth, numbing it a little so you feel like you've been to the dentist. But if it helps, I'll do it!! Still, yuck!
Another annoying thing I have is a superitchy scalp. I think I overdid it with the scratching when my platelets were low because I have irritated red patches now. My doctor said there's not anything to put on it, so I'm just waiting it out. I haven't lost my hair yet, and there's always the possibility that I won't lose it 'cause not everyone does, so Laura, hang back with the shaving equipment!!! Don't worry...if I don't lose it with the high-dose Ara-C, I'll probably lose it with the Cytaxin. :) Honestly, if it's this itchy, I'd rather have it shaved. Everyone always told me I had a nicely-shaped head. :) Thank you to Kathy for bringing me the baby hairbrush and the gloves so I can soothe the itch without making it worse.
I had a nice visit with Tiso today and he made the good point that it must have been meant to be that the first bone marrow aspirate I had didn't have enough cells for my doctor to determine the leukemia was back (I had an aspirate just before we went to Seattle). That way, I was able to enjoy a trip with the whole family before being confined to the hospital and enduring the transplant process. I think he's definitely right because I felt good in Seattle and had a wonderful time--I was a little tired, but that was all. Somebody wanted to make sure I had a nice break before making me go through all this crap again. :)
Thank you, Katie, for all the pictures you brought! My room is even cheerier (if that's possible) now! I have to be honest though---the majority of pictures are of dogs so don't be offended anyone. I got to see my pups through an on-line chat yesterday and today, and they look cute and happy as always. They perked their ears up so I'm pretty sure they recognized my voice.
Let's see...what else? Not too much. I'm happy to report I think I'm the healthiest patient on this floor (knock on wood again!), which is good, but sometimes frustrating. OK, that sounds weird...let me explain: Everyone (nurses, docs, assistants) sees me doing my laps every day, they know I don't have any major complaints, I still have my hair, I shower and use the bathroom without assistance, I have lots of visitors and I'm always laughing and smiling (well, except for when I listen to the ocean and start crying over my oatmeal :) )...anyway, basically, I AM healthy, except for the leukemia that USED to be in my body (I need to remember to talk about it in the past tense because I believe the cancerous cells are gone now, although I won't know until they do a bone marrow). So they see me looking so good (in health terms, not in beauty terms...after all, I'm not allowed to pluck my eyebrows or wear makeup and now my hair will have to suffer too because of my scalp--no more fancy hair products!--not that it's important, but it's nice to fix my hair while I have it)...so as I was saying, they see me looking good, and sometimes I feel like they put me at the bottom of their list. My nurse during the day today told me they were really busy so I would be her "poor, neglected patient" today....I know what she meant by it, but it still got me to thinking: "Hey! I am still a cancer patient here!" I understand the job of a nurse is very difficult (after all, my mom was a nurse!), but I think no matter how sick a patient appears to be, you should at least make each one feel as important as the other. Some of my nurses do this, so it's not really a big deal, but it's something that was on my mind so I figured I'd share it with you. Personally, I'm really glad to be the best one on the block, and I sure hope it stays that way!!
I heard my parents received lots of yummy food today (and they brought me some deeelicious samosas--thank you to the Sethis!!!), and I want to thank my neighbors for that! It amazes me how everyone (not only my neighbors, but everyone I know) pulls together, and I feel like I have this gigantic support network. Knowing that makes my fight against this nasty disease feel a whole lot easier, and I thank all of you. I said (well, technically, I wrote :) ) it before, but thank you for your visits, your calls, your cards, balloons, food, e-mails (I'm still catching up on writing back, but I love reading them!), well wishes. Just know that I'm feeling well, I'm fighting hard, and I'm thinking positively. Thanks for helping me along through this crappy situation again (wow, that's poetic, huh?!) :)
Love ya.
Friday, June 20, 2008
Fotos! :o)
Hey there! I know you've all been dying for some captions so here you go! :)
1)Chuck plays with Wii Fit...I think your clients would really like it, Chuck!! And make sure you save room to train me again once all this crap is over!!!; 2)John figured out how to use the timer on my camera so we could get a group shot (John, Paulina, Chuck and me);3)Paulina pretended like she couldn't hula hoop, and then she proceeded to do it for a minute or so--I think she's been secretly practicing :); 4)Katie poses with Ronnie's special gloveman, named "Wilson" after Tom Hanks' volleyball in "Castaway"; 5)Laura puts up the José Luis poster that Kristi brought in because she said the first time she blew up the picture of him when I was diagnosed in '05, it obviously wasn't big enough since the Big C came back. If you don't know the story of José Luis, here it is: Kristi and I were in Cuba and this supercute little frog was hanging out on our balcony with us. Kristi captured this amazing shot of him, and every time I look at the picture, I smile. I carried a wallet-sized one with me for forever. We name him José Luis because every guy we met in Cuba seemed to be named José Luis; 6)John masters the Wii; 7)Paulina attempts the Wii while Larry evaluates her efforts :); 8)My favorite is the ski jump, and I've discovered that to be REALLY good, you need to stick out your butt and your chest. :); 9)Larry and Dad watch me attempt to head butt the soccer balls; 10)Looking at part of my yummy dinner; 11)I believe it was cornbread stuffing, but it basically looked like regurgitated food...grooooooooosssss!!! Do you think the chefs actually looked at it before sending it up and gave it the thumbs up? --"Lookin' good!!! The patients will love it!!"; 12)Kristi shows off her moves with the hula hoop!! Go, Kristi!!!; 13)Laura puts up the pretty banner she made---my room looks gorgeous!!!!; and 14)the poster Laura made of Seattle pics-I love looking at it. OK, there you have it...I'll write more later!
1)Chuck plays with Wii Fit...I think your clients would really like it, Chuck!! And make sure you save room to train me again once all this crap is over!!!; 2)John figured out how to use the timer on my camera so we could get a group shot (John, Paulina, Chuck and me);3)Paulina pretended like she couldn't hula hoop, and then she proceeded to do it for a minute or so--I think she's been secretly practicing :); 4)Katie poses with Ronnie's special gloveman, named "Wilson" after Tom Hanks' volleyball in "Castaway"; 5)Laura puts up the José Luis poster that Kristi brought in because she said the first time she blew up the picture of him when I was diagnosed in '05, it obviously wasn't big enough since the Big C came back. If you don't know the story of José Luis, here it is: Kristi and I were in Cuba and this supercute little frog was hanging out on our balcony with us. Kristi captured this amazing shot of him, and every time I look at the picture, I smile. I carried a wallet-sized one with me for forever. We name him José Luis because every guy we met in Cuba seemed to be named José Luis; 6)John masters the Wii; 7)Paulina attempts the Wii while Larry evaluates her efforts :); 8)My favorite is the ski jump, and I've discovered that to be REALLY good, you need to stick out your butt and your chest. :); 9)Larry and Dad watch me attempt to head butt the soccer balls; 10)Looking at part of my yummy dinner; 11)I believe it was cornbread stuffing, but it basically looked like regurgitated food...grooooooooosssss!!! Do you think the chefs actually looked at it before sending it up and gave it the thumbs up? --"Lookin' good!!! The patients will love it!!"; 12)Kristi shows off her moves with the hula hoop!! Go, Kristi!!!; 13)Laura puts up the pretty banner she made---my room looks gorgeous!!!!; and 14)the poster Laura made of Seattle pics-I love looking at it. OK, there you have it...I'll write more later!
Correction
Hola,
So I figure I better give credit where credit is due, and say that Eleanor Roosevelt did not say that quote...it was Nelson Mandela....Nelson Mandela, Eleanor Roosevelt...same thing! hahahaha Laura wrote this am to correct me. I should have just written that Laura made it up! Anyway, I'll probably write more later, but I wanted to make sure I remembered to give you the right information!!--don't want you thinkin' I just make stuff up!!!
So I figure I better give credit where credit is due, and say that Eleanor Roosevelt did not say that quote...it was Nelson Mandela....Nelson Mandela, Eleanor Roosevelt...same thing! hahahaha Laura wrote this am to correct me. I should have just written that Laura made it up! Anyway, I'll probably write more later, but I wanted to make sure I remembered to give you the right information!!--don't want you thinkin' I just make stuff up!!!
Thursday, June 19, 2008
Hello from the land of foam toothbrushes
You're probably wondering about the title for this entry. Because my platelets are low, I have to use disposable foam toothbrushes to brush my teeth...well, to get technical, I use a soft regular toothbrush on my teeth and a foam toothbrush on my gums. Anyone who knows my obsession with those stimudent picks, floss and electric toothbrushes (I'm very proud of my dental hygiene :) ) knows how this new routine drives me crazy!! I know cavities should be the least of my worries, but I had braces from 5th grade until 10th grade, and I don't want my teeth to turn ugly! I know, I know, I should be supergrateful that I don't have mouth sores from the chemo, but still. :)
I have lots to say today (lucky you!) hahahahaha)....hmmmm...where to start?!! I was very touched to discover that the coach of my Team in Training (TNT) walk team brought hula hoops to training on Saturday in my honor, and apparently everyone had a good time...as I've said before, it is impossible to hula hoop and not smile! Try it at home, and if you find you're not laughing, let me know because you must be doing something wrong! :) My walk coach from last year asked me to be her personal honored teammate for the TNT Nation's Triathlon in September. I felt so honored (you'd think I could come up with a better adjective, but hey!--that's what it's called..."honored" teammate, and that's how I feel!) So I'm rooting for her as she continues her training--I can't imagine doing a tri, but maybe someday when this crap is through....although she did e-mail me about a group of people who hula-hooped, that's right HULA-HOOPED their way through the Nashville half marathon this spring!!!! Think I should train for that next? hahahaha THAT sounds pretty difficult, but I would love to watch someone else do it!!!! Geez...can you imagine....I think it'd take me 8 hours to finish a half marathon if I were hula-hooping. Check out the group's website: http://www.hooprama.com/hoopingforhope (sorry I can't put the link in directly...if you want to see it, you'll have to go through the extra effort of copying and pasting....I know, it's hardly worth all that work! :) )
Let's see...what else...here's a random thought for you. Sometimes I think about my situation and I actually feel lucky to be in the hospital for a month....ok, maybe not exactly...let me rephrase that. Acute leukemia requires immediate hospitalization for an extended period of time, and you have to spend your time concentrating on getting well. The bone marrow transplant process is a lengthy and difficult process, but again, I feel like I am forced to take the time to get well. I guess I'm only speaking from my experience, because maybe other people work from the hospital or have other responsibilities, so maybe I'm lucky in that way...I'm not married, I don't have children (except for my pups!:) ), I don't have a job, I don't have many payments (although I do have to remember to contact my student loan people and tell them I'll be asking for forbearance AGAIN!!---and they better give it to me!!) Anyway, I guess I just think that sometimes it's easier to have to be in the hospital and to relinquish any of my responsibilities. I know it sounds really weird, but I watch other cancer patients have to do treatment and then head to work, and then home to care for their families, and I just think "How can you do that?!" I know each cancer is different though. Sometimes I feel jealous for the freedom of other cancer patients because they are allowed to go out and do things. I'll be relatively isolated for the next several months, and it makes me sad to think I won't be going to dinner, the movies, shopping, or even the grocery store for a long time. I guess there's no way to compare different cancers--no one is "better" than the other, but I just find myself thinking about these things sometimes...."deep thoughts with Julie". :) Does anything I just wrote even make any sense??!! If it doesn't, I'm just 'gonna go ahead and blame chemo brain.
My parents and I had a wonderful meeting with one of my doctors today. He talked with us for almost two hours, explaining the bone marrow transplant process and answering any questions we had. Although there are many scary parts to what awaits me, I felt comforted when he left. He said "look upon this as an opportunity to cure your disease, but it is a lifelong job", meaning basically (as I interpreted it) that I will constantly need to monitor my body and how I'm feeling and that I can show effects from graft-versus-host disease (GVH) at any time: days, months or years following the transplant. Possible complications following the transplant could be anything from pneumonia to liver damage. Although a bone marrow transplant is much easier to perform than other transplants (ie they don't have to open me up, and apparently they harvest Laura's cells through a peripheral blood stem cell transplant which is similar to the process you would go through for donating platelets), it is considered just as risky and serious as the transplant of any organ. Before my transplant, I will be given the chemo drug Cytaxin and full body irradiation. I am choosing not to do any research on the possible side effects of these because no matter what, I have to go through with them, and I feel much better going into the process with a clear head. Whatever happens happens and we will deal with it at that time. I fully believe in the power of the mind and attitude when dealing with illness, and overloading myself with scary side effects will be of no use.
One thing I found kind of funny during the conversation was when my doctor commented on how the hospital he worked in (and the living facilities for patients when they were released from the hospital) when he first worked with bone marrow patients was in a tough part of the city, and how he always thought that was strange....that got me to thinking (of course, since I have a sick sense of humor): how much would it suck if you went through everything for a bone marrow transplant and then you got mugged on the way to a check-up? I know, I know, I'm really sick, but I can't help it.
One thing he did say that made me sad was that I can't hold babies for a while, so I'll miss my little goddaughter, Addison, my buddies Jack and Connor and the babies yet to come (two of my friends are pregnant). I don't know how long it will be, but I look forward to seeing all of them and giving lots of hugs sometime in the fall/winter.
Today was a good day...I got in 25 laps, had my dressing changed (it's looking good!), enjoyed some deeeeeeeelicious rhubarb pie (thanks, Norma! :) ), my favorite dessert of all time, chatted with friends and family and watched "My Boys" (an awesome show on TBS Thursdays at 9:30...you should check it out!). I accidentally petechiaed (I totally made up that verb...."petechiae" are little red/purple dots from broken capillary blood vessels---in my case the result of low platelets) myself this afternoon when I went a little crazy with the tape to cover up my dressing (you're not supposed to get it wet) when I took a shower. So now I have some beautiful red dots right around my clavicle...I'll be a little more careful with the tape tomorrow. :)
One last thing: I owe so many people special thank you's for your support, but I think there's one special one I need to mention tonight.
Laura, thank you for everything you have done for me. It's hard for me to tell you in person how much all these beautiful decorations in my room mean to me, and I feel like I can't find the right written words either. Everywhere I look, there is color, a flower or heart you slaved hard to cut out :), a photograph to remind me of a special time, a kind message. Everyone comments on my pole buddy when I walk through the halls--even if they think the orange is for Halloween. :) You visit every day, you slept in that uncomfy-looking chair (although to be honest, you had no problems falling asleep! :) hahaha)...and I'm not writing all this just cause, as you put it, "you're giving me the gift of life". :) I watch you and I know you must be exhausted from driving, working, worrying, but you never get angry or frustrated, and somehow you always make me laugh. You are very strong, and I'm glad I'm gettin' me some of that bone marrow! :) The quote you found for my wall is perfect: "The greatest glory in living lies not in never falling, but in rising every time we fall" (Eleanor "Ellie" (as you call her) Roosevelt). Thanks for helping to pick me up. I love you!
I have lots to say today (lucky you!) hahahahaha)....hmmmm...where to start?!! I was very touched to discover that the coach of my Team in Training (TNT) walk team brought hula hoops to training on Saturday in my honor, and apparently everyone had a good time...as I've said before, it is impossible to hula hoop and not smile! Try it at home, and if you find you're not laughing, let me know because you must be doing something wrong! :) My walk coach from last year asked me to be her personal honored teammate for the TNT Nation's Triathlon in September. I felt so honored (you'd think I could come up with a better adjective, but hey!--that's what it's called..."honored" teammate, and that's how I feel!) So I'm rooting for her as she continues her training--I can't imagine doing a tri, but maybe someday when this crap is through....although she did e-mail me about a group of people who hula-hooped, that's right HULA-HOOPED their way through the Nashville half marathon this spring!!!! Think I should train for that next? hahahaha THAT sounds pretty difficult, but I would love to watch someone else do it!!!! Geez...can you imagine....I think it'd take me 8 hours to finish a half marathon if I were hula-hooping. Check out the group's website: http://www.hooprama.com/hoopingforhope (sorry I can't put the link in directly...if you want to see it, you'll have to go through the extra effort of copying and pasting....I know, it's hardly worth all that work! :) )
Let's see...what else...here's a random thought for you. Sometimes I think about my situation and I actually feel lucky to be in the hospital for a month....ok, maybe not exactly...let me rephrase that. Acute leukemia requires immediate hospitalization for an extended period of time, and you have to spend your time concentrating on getting well. The bone marrow transplant process is a lengthy and difficult process, but again, I feel like I am forced to take the time to get well. I guess I'm only speaking from my experience, because maybe other people work from the hospital or have other responsibilities, so maybe I'm lucky in that way...I'm not married, I don't have children (except for my pups!:) ), I don't have a job, I don't have many payments (although I do have to remember to contact my student loan people and tell them I'll be asking for forbearance AGAIN!!---and they better give it to me!!) Anyway, I guess I just think that sometimes it's easier to have to be in the hospital and to relinquish any of my responsibilities. I know it sounds really weird, but I watch other cancer patients have to do treatment and then head to work, and then home to care for their families, and I just think "How can you do that?!" I know each cancer is different though. Sometimes I feel jealous for the freedom of other cancer patients because they are allowed to go out and do things. I'll be relatively isolated for the next several months, and it makes me sad to think I won't be going to dinner, the movies, shopping, or even the grocery store for a long time. I guess there's no way to compare different cancers--no one is "better" than the other, but I just find myself thinking about these things sometimes...."deep thoughts with Julie". :) Does anything I just wrote even make any sense??!! If it doesn't, I'm just 'gonna go ahead and blame chemo brain.
My parents and I had a wonderful meeting with one of my doctors today. He talked with us for almost two hours, explaining the bone marrow transplant process and answering any questions we had. Although there are many scary parts to what awaits me, I felt comforted when he left. He said "look upon this as an opportunity to cure your disease, but it is a lifelong job", meaning basically (as I interpreted it) that I will constantly need to monitor my body and how I'm feeling and that I can show effects from graft-versus-host disease (GVH) at any time: days, months or years following the transplant. Possible complications following the transplant could be anything from pneumonia to liver damage. Although a bone marrow transplant is much easier to perform than other transplants (ie they don't have to open me up, and apparently they harvest Laura's cells through a peripheral blood stem cell transplant which is similar to the process you would go through for donating platelets), it is considered just as risky and serious as the transplant of any organ. Before my transplant, I will be given the chemo drug Cytaxin and full body irradiation. I am choosing not to do any research on the possible side effects of these because no matter what, I have to go through with them, and I feel much better going into the process with a clear head. Whatever happens happens and we will deal with it at that time. I fully believe in the power of the mind and attitude when dealing with illness, and overloading myself with scary side effects will be of no use.
One thing I found kind of funny during the conversation was when my doctor commented on how the hospital he worked in (and the living facilities for patients when they were released from the hospital) when he first worked with bone marrow patients was in a tough part of the city, and how he always thought that was strange....that got me to thinking (of course, since I have a sick sense of humor): how much would it suck if you went through everything for a bone marrow transplant and then you got mugged on the way to a check-up? I know, I know, I'm really sick, but I can't help it.
One thing he did say that made me sad was that I can't hold babies for a while, so I'll miss my little goddaughter, Addison, my buddies Jack and Connor and the babies yet to come (two of my friends are pregnant). I don't know how long it will be, but I look forward to seeing all of them and giving lots of hugs sometime in the fall/winter.
Today was a good day...I got in 25 laps, had my dressing changed (it's looking good!), enjoyed some deeeeeeeelicious rhubarb pie (thanks, Norma! :) ), my favorite dessert of all time, chatted with friends and family and watched "My Boys" (an awesome show on TBS Thursdays at 9:30...you should check it out!). I accidentally petechiaed (I totally made up that verb...."petechiae" are little red/purple dots from broken capillary blood vessels---in my case the result of low platelets) myself this afternoon when I went a little crazy with the tape to cover up my dressing (you're not supposed to get it wet) when I took a shower. So now I have some beautiful red dots right around my clavicle...I'll be a little more careful with the tape tomorrow. :)
One last thing: I owe so many people special thank you's for your support, but I think there's one special one I need to mention tonight.
Laura, thank you for everything you have done for me. It's hard for me to tell you in person how much all these beautiful decorations in my room mean to me, and I feel like I can't find the right written words either. Everywhere I look, there is color, a flower or heart you slaved hard to cut out :), a photograph to remind me of a special time, a kind message. Everyone comments on my pole buddy when I walk through the halls--even if they think the orange is for Halloween. :) You visit every day, you slept in that uncomfy-looking chair (although to be honest, you had no problems falling asleep! :) hahaha)...and I'm not writing all this just cause, as you put it, "you're giving me the gift of life". :) I watch you and I know you must be exhausted from driving, working, worrying, but you never get angry or frustrated, and somehow you always make me laugh. You are very strong, and I'm glad I'm gettin' me some of that bone marrow! :) The quote you found for my wall is perfect: "The greatest glory in living lies not in never falling, but in rising every time we fall" (Eleanor "Ellie" (as you call her) Roosevelt). Thanks for helping to pick me up. I love you!
Wednesday, June 18, 2008
Una Cosa Más
You know...I was just thinking while I was brushing my teeth that I made it sound like I was only thankful for my visitors. I just wanted to clarify that I am thankful to ALL of you---for your visits, your phone calls, your e-mails, your prayers, your support and your love. You not only keep me strong, but you help my family stay strong. And a special thank you to Katie's coworkers for the surprise lunch you gave her today. She and our entire family were truly touched by your thoughtful gifts and wishes, and it makes me so happy to know that she has such a special group of people to help her through this whole crappy situation. Muchísimas gracias to everyone! (like the Spanglish?) :)
Wednesday in Room 477 ;)
Whassssssupppppp....
Hi there everyone! I had a great day today...thanks to Rich and Abe, I knocked out 20 laps before 3 PM! Of course, I'm also superfast. :) I think maybe I'll get a bell or horn for my pole buddy to encourage the slower folks to get out of my way...is that inappropriate?! hahahahaha Laura also beautified my room even more with a "Julie-We Love You-Keep Fighting" banner and a poster with pics of the family. Paulina brought adorable pics of little Jack and my buddy Mogo (her dog), and they are sitting on my windowsill so I can see their cute faces whenever I want!
I forgot to write about my Hickman the other day...they do think it's infected, but the clinical specialist (whom I love!!) has changed my dressing every day, and I'm still on the Vancomycin. The redness and swelling has gone down a lot and the tenderness has all but disappeared, so I feel much better about that.
I'm gettin' kinda tired, so I'll sign off, but thanks to all my wonderful visitors today! I had a great time--it feels so weird to say "I had a great time" when I think about the fact that I'm in the hospital--but I really did!!!! I love hanging out with everyone--you make it easy to be strong.
Hi there everyone! I had a great day today...thanks to Rich and Abe, I knocked out 20 laps before 3 PM! Of course, I'm also superfast. :) I think maybe I'll get a bell or horn for my pole buddy to encourage the slower folks to get out of my way...is that inappropriate?! hahahahaha Laura also beautified my room even more with a "Julie-We Love You-Keep Fighting" banner and a poster with pics of the family. Paulina brought adorable pics of little Jack and my buddy Mogo (her dog), and they are sitting on my windowsill so I can see their cute faces whenever I want!
I forgot to write about my Hickman the other day...they do think it's infected, but the clinical specialist (whom I love!!) has changed my dressing every day, and I'm still on the Vancomycin. The redness and swelling has gone down a lot and the tenderness has all but disappeared, so I feel much better about that.
I'm gettin' kinda tired, so I'll sign off, but thanks to all my wonderful visitors today! I had a great time--it feels so weird to say "I had a great time" when I think about the fact that I'm in the hospital--but I really did!!!! I love hanging out with everyone--you make it easy to be strong.
Tuesday, June 17, 2008
Hey there everyone! I'm just sitting here with Laura (well, technically, she's napping :) ). She slept over last night, we watched some "Fresh Prince of Bel Air", and she did my hair for me this morning...except for her narcolepsy, she's a wonderful visitor! :)
All's well in Room 477. Yesterday morning when I woke up, I felt so good! I ate my breakfast, took a shower and did my hair (and even danced around a bit while getting ready to "Do You Love Me?"--one of THE best songs to dance to)...too bad my nurses didn't walk in! :) I visited with a friend, walked ten quick laps...it was a great morning. I don't know if maybe I did too much, but in the afternoon, I got a head/neckache, and it scared me because I had been feeling so good. I know there are any number of reasons for it: my different medicines, the low blood counts, pushing myself to do too much, but I still worried. Between the time I was first diagnosed until now, I really learned to understand my body and to listen to it when something felt wrong, so I asked the nurse to take my temperature, and I took some Tylenol for the headache. After that, I put on some Norah Jones and rested.
I know these details aren't interesting, but I feel like they give a little insight into my emotions and my experience with leukemia.
Anyone who knew me when I was diagnosed with AML three and a half years ago can probably sense through talking to me or via the blog that I am more frightened this time. There is no doubt about it: I am, but I don't want this to upset anyone. I think if I weren't more frightened, it would be strange. I spoke with several people today about why I'm more afraid because they were concerned, so I just wanted to address it...here's a stream of consciousness for you to explain it a little better: The first time I was diagnosed, I was really sick. I came in to the ER with a hemoglobin of 4 one day after I returned from a trip to Ecuador, and I had no idea what leukemia meant or what my treatment would be like. Over the next couple months, I became familiar with a new routine that included chemo, growth factor shots, antibiotics, other various medicines, blood and platelet transfusions, bone marrow aspirates and biopsies, doctor visits...I achieved remission following my first chemo in the hospital, and I felt I would have no problem beating the cancer. I never felt truly scared until August '05 when my Hickman catheter got infected and my fever reached 106.8...it was the one and only time I threw up following treatment. Whenever I heard people talk about bone marrow transplants, I thought "Boy, am I lucky I don't have to have one of those!" because I heard about how hard they were, and I heard a myriad of stories regarding them: some successful, some not, but all terrifying to me. I joined a young adult support group which I love, but which also presented me with the hugely unfair fact that not everyone beats cancer...I mean, I knew that. I lost an uncle and family friends to cancer, but never a peer. As a survivor, I accepted the fact that I would probably think of cancer every day in some way, and I would probably always wonder if it would come back. I'm able to talk about these concerns with other members of my group, and it has helped me tremendously, but I realize that meeting so many other young cancer survivors made me more aware of cancer in general. I guess that is one of the main factors that adds to my fear because I know not everyone is cured. I don't constantly think of the sad stories, but I will certainly never forget the members in my group who lost the battle (for lack of a better phrase). And I don't want to forget them, because each one inspired me with his/her spirit. I guess what I'm trying to say is that ignorance can indeed be bliss, and the first time around with AML was easier in a matter of speaking, because I didn't necessarily know what to worry about.
So all that said, I still have a positive attitude!! But I won't deny that I'm afraid. I'm figuring out how to manage it though. I'm spending lots of time with family and friends, I'm laughing constantly, but I still cry sometimes. I distract myself with music, reading, tv, movies, therapy dogs. :) I'm thinking toward the future, and I want to know the basics of what lies ahead, but I do not want to dwell on worries of what might be. I wake up each day, eat my breakfast (the best meal of the day!), take a shower, talk to my nurses, do my laps....I'm taking it one step at a time (no pun intended! :) ) I write down my concerns and I present them to my doctor each morning, and I pay close attention to what my body tells me. I will forge ahead because I have no choice. I would much prefer to be doing anything but this right now, but I can't change it, and somehow some good will come of it. If nothing else, it gives me more time to figure out what I want to be when I grow up! :)
This blog is a perfect way for me to express myself, and I'm so thankful the hospital has improved its technology since the last time I was here!
Remember how I said looking at the stars has always brought me peace? Well, I looked out my window earlier (it's actually 11:19 PM right now, even though my blog says I post whenever I started writing which was this morning...I got a little busy...I'm not that slow of a writer. :) )...anyway, I looked out my window earlier and I have the perfect view of a beautiful, (what appears to be full) moon...funny how things work sometimes, huh? Just when I need a little reassurance. I consider little things like that a sign that someone's lookin' out for me. :)
All's well in Room 477. Yesterday morning when I woke up, I felt so good! I ate my breakfast, took a shower and did my hair (and even danced around a bit while getting ready to "Do You Love Me?"--one of THE best songs to dance to)...too bad my nurses didn't walk in! :) I visited with a friend, walked ten quick laps...it was a great morning. I don't know if maybe I did too much, but in the afternoon, I got a head/neckache, and it scared me because I had been feeling so good. I know there are any number of reasons for it: my different medicines, the low blood counts, pushing myself to do too much, but I still worried. Between the time I was first diagnosed until now, I really learned to understand my body and to listen to it when something felt wrong, so I asked the nurse to take my temperature, and I took some Tylenol for the headache. After that, I put on some Norah Jones and rested.
I know these details aren't interesting, but I feel like they give a little insight into my emotions and my experience with leukemia.
Anyone who knew me when I was diagnosed with AML three and a half years ago can probably sense through talking to me or via the blog that I am more frightened this time. There is no doubt about it: I am, but I don't want this to upset anyone. I think if I weren't more frightened, it would be strange. I spoke with several people today about why I'm more afraid because they were concerned, so I just wanted to address it...here's a stream of consciousness for you to explain it a little better: The first time I was diagnosed, I was really sick. I came in to the ER with a hemoglobin of 4 one day after I returned from a trip to Ecuador, and I had no idea what leukemia meant or what my treatment would be like. Over the next couple months, I became familiar with a new routine that included chemo, growth factor shots, antibiotics, other various medicines, blood and platelet transfusions, bone marrow aspirates and biopsies, doctor visits...I achieved remission following my first chemo in the hospital, and I felt I would have no problem beating the cancer. I never felt truly scared until August '05 when my Hickman catheter got infected and my fever reached 106.8...it was the one and only time I threw up following treatment. Whenever I heard people talk about bone marrow transplants, I thought "Boy, am I lucky I don't have to have one of those!" because I heard about how hard they were, and I heard a myriad of stories regarding them: some successful, some not, but all terrifying to me. I joined a young adult support group which I love, but which also presented me with the hugely unfair fact that not everyone beats cancer...I mean, I knew that. I lost an uncle and family friends to cancer, but never a peer. As a survivor, I accepted the fact that I would probably think of cancer every day in some way, and I would probably always wonder if it would come back. I'm able to talk about these concerns with other members of my group, and it has helped me tremendously, but I realize that meeting so many other young cancer survivors made me more aware of cancer in general. I guess that is one of the main factors that adds to my fear because I know not everyone is cured. I don't constantly think of the sad stories, but I will certainly never forget the members in my group who lost the battle (for lack of a better phrase). And I don't want to forget them, because each one inspired me with his/her spirit. I guess what I'm trying to say is that ignorance can indeed be bliss, and the first time around with AML was easier in a matter of speaking, because I didn't necessarily know what to worry about.
So all that said, I still have a positive attitude!! But I won't deny that I'm afraid. I'm figuring out how to manage it though. I'm spending lots of time with family and friends, I'm laughing constantly, but I still cry sometimes. I distract myself with music, reading, tv, movies, therapy dogs. :) I'm thinking toward the future, and I want to know the basics of what lies ahead, but I do not want to dwell on worries of what might be. I wake up each day, eat my breakfast (the best meal of the day!), take a shower, talk to my nurses, do my laps....I'm taking it one step at a time (no pun intended! :) ) I write down my concerns and I present them to my doctor each morning, and I pay close attention to what my body tells me. I will forge ahead because I have no choice. I would much prefer to be doing anything but this right now, but I can't change it, and somehow some good will come of it. If nothing else, it gives me more time to figure out what I want to be when I grow up! :)
This blog is a perfect way for me to express myself, and I'm so thankful the hospital has improved its technology since the last time I was here!
Remember how I said looking at the stars has always brought me peace? Well, I looked out my window earlier (it's actually 11:19 PM right now, even though my blog says I post whenever I started writing which was this morning...I got a little busy...I'm not that slow of a writer. :) )...anyway, I looked out my window earlier and I have the perfect view of a beautiful, (what appears to be full) moon...funny how things work sometimes, huh? Just when I need a little reassurance. I consider little things like that a sign that someone's lookin' out for me. :)
Sunday, June 15, 2008
Happy Father's Day!
Happy Father's Day, Dad and to all those fathers out there!! I hope you had a nice one. It looked like a pretty day here in VA.
All is well here in the hospital. I had lots of wonderful visitors again today, enjoyed some homemade soup for lunch and a spectacular steak for dinner...I felt almost normal with all that delicious food.
The day didn't start out especially well...I just felt blah and kind of sad, and while eating my oatmeal, I decided to switch my sound machine to the ocean (I always sleep with it on "rain")...well, before I knew it, I was crying and wishing I were sitting beside the ocean, far from the hospital and any talk of transplants, chemo, radiation, white and red blood cell counts, well, you get the idea. Then I started thinking "When will I see the ocean again? Will I ever see it again?" I honestly don't think of the second question often, but as probably anyone in my situation would, I do think about death sometimes and, let's face it, it's inevitable at some point! :) Seriously though, it is not anything I dwell on, but I am keenly aware of the risks of low counts and infection and of course, cancer in general. I think my worries were heightened this morning because yesterday when my nurse changed the dressing for my catheter, it was red and a little swollen, and it's been a little sore. With a neutrophil count of 0, infection is a very serious and possible problem. I told my doctor I was worried this morning, so he put me on Vancomycin, a strong iv antibiotic. A catheter/iv specialist will change my dressing tomorrow, so I feel like I've gotten that worry under control now. But I think that's why I was just especially sensitive this morning. I also had a little bit of bone pain in my sternum and lower back in the early AM so I tossed and turned for a bit. It's a side effect of the growth factor shot they give me to boost my cells...by the way, Neupogen stings a lot more than Leukine, the shots I would get in '05...it's not awful, but it's definitely a little annoying! And because my platelets are so low, I have some really pretty little bruises on my arms now.
Sooooo anyway, not the best beginning to the day, but the rest of the day went well. My mom arrived shortly after the crying-over-the-ocean episode, and she had me laughing soon. We were also cracking up when my dad said not to worry, that I'd see the ocean in either Boston or Seattle....although he meant it to be nice, we joked with him, saying "Yah, Dad...that'll be great...I can just take binoculars to look at the ocean from my room while going through the transplant procedure." It's nice to have family and friends who can make inappropriate jokes and laugh during such a serious illness. :) It really makes all the difference!!
Oh, I also had crazy nightmares last night...strangely enough, there was lots of water involved. Huge waves were threatening buildings, but I still woke up missing the ocean. I interpret the dreams as meaning I'm feeling a bit overwhelmed by everything, and I feel like I don't have control....either that, or it could have been the surfing competition I saw while flipping through channels last night and the rain I listen to when I sleep. :)
But to get back to the rest of my day, it was great! I did my 20 modified laps, relaxed while Kathy did my hair, visited with friends and the fam, ate scrumptious food, and laughed a lot. Now I'm going to see if there's anything good on tv.
I hope everyone had a wonderful weekend and a great Father's Day!!!
All is well here in the hospital. I had lots of wonderful visitors again today, enjoyed some homemade soup for lunch and a spectacular steak for dinner...I felt almost normal with all that delicious food.
The day didn't start out especially well...I just felt blah and kind of sad, and while eating my oatmeal, I decided to switch my sound machine to the ocean (I always sleep with it on "rain")...well, before I knew it, I was crying and wishing I were sitting beside the ocean, far from the hospital and any talk of transplants, chemo, radiation, white and red blood cell counts, well, you get the idea. Then I started thinking "When will I see the ocean again? Will I ever see it again?" I honestly don't think of the second question often, but as probably anyone in my situation would, I do think about death sometimes and, let's face it, it's inevitable at some point! :) Seriously though, it is not anything I dwell on, but I am keenly aware of the risks of low counts and infection and of course, cancer in general. I think my worries were heightened this morning because yesterday when my nurse changed the dressing for my catheter, it was red and a little swollen, and it's been a little sore. With a neutrophil count of 0, infection is a very serious and possible problem. I told my doctor I was worried this morning, so he put me on Vancomycin, a strong iv antibiotic. A catheter/iv specialist will change my dressing tomorrow, so I feel like I've gotten that worry under control now. But I think that's why I was just especially sensitive this morning. I also had a little bit of bone pain in my sternum and lower back in the early AM so I tossed and turned for a bit. It's a side effect of the growth factor shot they give me to boost my cells...by the way, Neupogen stings a lot more than Leukine, the shots I would get in '05...it's not awful, but it's definitely a little annoying! And because my platelets are so low, I have some really pretty little bruises on my arms now.
Sooooo anyway, not the best beginning to the day, but the rest of the day went well. My mom arrived shortly after the crying-over-the-ocean episode, and she had me laughing soon. We were also cracking up when my dad said not to worry, that I'd see the ocean in either Boston or Seattle....although he meant it to be nice, we joked with him, saying "Yah, Dad...that'll be great...I can just take binoculars to look at the ocean from my room while going through the transplant procedure." It's nice to have family and friends who can make inappropriate jokes and laugh during such a serious illness. :) It really makes all the difference!!
Oh, I also had crazy nightmares last night...strangely enough, there was lots of water involved. Huge waves were threatening buildings, but I still woke up missing the ocean. I interpret the dreams as meaning I'm feeling a bit overwhelmed by everything, and I feel like I don't have control....either that, or it could have been the surfing competition I saw while flipping through channels last night and the rain I listen to when I sleep. :)
But to get back to the rest of my day, it was great! I did my 20 modified laps, relaxed while Kathy did my hair, visited with friends and the fam, ate scrumptious food, and laughed a lot. Now I'm going to see if there's anything good on tv.
I hope everyone had a wonderful weekend and a great Father's Day!!!
Photographs!
Thanks for posting these, Katie! Pics from Week 1 in my new home, Room 477. :)
They are as follows: 1)Kathy fixing my hair this morning....it is now 7:30 and it's still curly---good job, Kathy!! :) That never happens with me!; 2)Ronnie, me and my pole buddy (isn't he cute all decorated?!--the pole, not Ronnie); 3)I just gobbled down this yummy smiley cookie from Katie's friend, Marie...deeeeelish!; 4)my pole buddy (people seem to think the orange is for Halloween, but it's actually the color for leukemia...oh well, let them think whatever they want!); 5)a verrry cool light up hat my friend Jennifer gave me...yup, that's a light-up Yankees hat, folks!! Be verrrry jealous! I'm looking forward to when I can wear it to a night game; 6)Pete tries to keep Laura in order with the Hulk gloves; 7)Pete does a little hula hooping; 8)Astro, a lab mix, and me...he was here when I was diagnosed in '05---verrrrry sweet dog who's happy to lay on the bed all day!; 9)Doin' a little yoga with Wii Fit; 10)Tiso is the master of marble sinking with the Fit; 11)my mom and Marc playing Wii; 12)Mom's character--for some reason it cracked us all up; 13)Lori doing some hula hoopin'; 14) and 15)Our spa night---Lori and I with our cool cucumber slices.
Hope you enjoy them!!!
They are as follows: 1)Kathy fixing my hair this morning....it is now 7:30 and it's still curly---good job, Kathy!! :) That never happens with me!; 2)Ronnie, me and my pole buddy (isn't he cute all decorated?!--the pole, not Ronnie); 3)I just gobbled down this yummy smiley cookie from Katie's friend, Marie...deeeeelish!; 4)my pole buddy (people seem to think the orange is for Halloween, but it's actually the color for leukemia...oh well, let them think whatever they want!); 5)a verrry cool light up hat my friend Jennifer gave me...yup, that's a light-up Yankees hat, folks!! Be verrrry jealous! I'm looking forward to when I can wear it to a night game; 6)Pete tries to keep Laura in order with the Hulk gloves; 7)Pete does a little hula hooping; 8)Astro, a lab mix, and me...he was here when I was diagnosed in '05---verrrrry sweet dog who's happy to lay on the bed all day!; 9)Doin' a little yoga with Wii Fit; 10)Tiso is the master of marble sinking with the Fit; 11)my mom and Marc playing Wii; 12)Mom's character--for some reason it cracked us all up; 13)Lori doing some hula hoopin'; 14) and 15)Our spa night---Lori and I with our cool cucumber slices.
Hope you enjoy them!!!
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