September 19th, 2008

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Technical difficulties

Friday, September 19th, 2008

Happy Friday, everyone!

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

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

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

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

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

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

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

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

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

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

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

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

Lots of love.

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