Monday, August 23, 2010

Chemopalooza Day 3 (or Day -4)

You know that feeling when you've had too much to drink? When you turn your head and then a split second later the room follows? When you stagger a bit and slur? When you look like holy hell? Yeah, that was me this morning thanks to my brand new anti-seizure drug, Dilantin. Only, it was way less fun than when I actually get drunk. Just sayin'.

No, I'm not having seizures, nor do I plan to, it's just that the new chemo they added this morning, Busulfan, can cause them so I was given drugs to prevent it. I'll take this feeling over a seizure, for sure.  Check it:
The giant bag in the middle is the Busulfan and the pouches on the side are a few day's worth of Fludarabine. Apparently I took this at 7 am....but don't remember doing so. Talk about a surprise when I looked at my phone around noon!

This morning was one of the rougher mornings I've ever had.  Not the worst by far, but rough.  Allow me to freak you out: The past two days, my chest has been really congested because of all of the fluid they're giving me to flush my system from the chemo, not a bad thing. This morning though, it felt like I was drowning. As in, I was drifting in and out of sleep and dreaming about drowning. I was in a pool and someone jumped on my head and I was stuck underwater drowning. Not gonna lie, it was kind of scary. OK, really scary. Dr. Lee, my transplant doctor for this floor, gave me lasix and a chest x-ray to be safe and, by lunch (read: 3 o'clock), I felt a bit better. The room still isn't quite moving with me, but that's cool because I can breathe, and we all know that's the most important part. It's a little crazy when you can't quite do the thing you rely on, but, modern medicine is amazing and I am thankful that it is working!

One of the best things about being in a hospital of this caliber is that when something isn't right, or you are feeling a side effect, it is taken care of right away. The other hospital experience I had when I was first diagnosed, remind me to tell you that story, was a lot of begging and waiting for drugs, and not even the fun ones.  Here, when I report a side effect or am feeling discomfort, it is addressed within minutes. Man, am I thankful for good insurance. It's a fucking sin that everyone doesn't have access to this kind of health care.

Another great thing about being here is that there are an abundance of research studies and clinical trials to be taken advantage of. Some people aren't cool with these things, too untrustworthy, but I think they're great if they address a need. Today, I was asked to participate in a research study on the effect of exercise on transplant patients. Specifically tracking amount of exercise in a week (20 minutes, three times a week, minimum) on the outcome of transplant. Basically all I have to do is track how much I exercise each week on a chart and have it checked by my doctor or nurse. Mind you, this is not my typical kind of exercise. Walking around the floor a few times counts as exercise, an idea that I scoffed at until today. Man, this shit takes a toll on you!  My plan the last few days has been to order my meals and then go walking until it shows up, 30 to 45 minutes later. Today, I made it twice around my pod (little section of ten rooms) in the morning and twice around the floor with Mom in the afternoon before getting too tired to go on. You know what? I'm alright with that. Just getting up and moving counts. OH!! BTW! A great perk of being in this research study is that they put an exercise bike in the corner of my room so I can pedal and watch TV or read a book if I'm too tired to get out and walk. Seriously people, I feel so damn lucky to have access to this kind of care. Here's my bike:)

So cool, right? Apparently they also have a Wii Fit I can use. If i'm having a good day tomorrow, I'm totally taking advantage of THAT.

For tonight though, I'm sitting my the little window in my room, watching a big Gulf storm roll in. It reminds me of home:) The next few days may or may not be the roughest so if I don't update, you'll know why. Tomorrow is the last day of Chemo (WAHOO!) with something called ATG (uh, it's derived from rabbits. weird.) for the next three. ATG can be tough for some people, please send prayers/intention/juju that it's smooth sailing for me. Of course, the big day is Friday.

Before I sign off, there is one person I would like to thank, besides, uh, ALL OF YOU. Thank you Heather, I wore them today and thought of roses.

Much love!


  1. Ouch, vertigo is not a friend. I'm so sorry you had a rough day, and rough on the way you described! I'm impressed that you walked twice, got speedy help for the scary moments, wrote this blog (!), and are considering being part of the exercise study--and that you're re-framing what you think of as an achievement. Solid and healthy, heartfelt congratulations from me. These are teachable moments for all of us. Remind me to tell you about an NPR conversation I heard today about "sunrises and seamonsters." Love to you and may time fly through tomorrow, Chris

  2. ONE MORE DAY OF pre BMT CHEMO! WAHOOOOO IS RIGHT! ATG ... no problem. Rabbit, horse, whatever ... you will make it through!!!! Take it minute by minute, hour by hour ... sleep, sleep, sleep if you can! Continue to ask for what you need. I TOTALLY agree about the type of hospital you're in, in regards to getting what you need ... and FAST. Sloan Kettering was the same way. Angels ... all of those nurses and doctors are ANGELS. I'm SOOOO glad the eye mask is working for you. 9 years later and I'm still wearing an eye mask to sleep! Haaaa! Such a comfort! I will be thinking of you tomorrow and during your 'days of rest'. Countdown to your new 'birthday' is ON!


  3. Laura....I am sending all the good vibes I can to you for a smooth day tomorrow and of course the whole time. I am thankful that you have such amazing doctors,nurses,assitances and hospital staff to help make this time a little less taxing and more comfortable for you. If that is possible. Know that I am praying for you and wishing you a safe journey to recovery and new beginning!
    I miss and love you dearly:-) Continue to be strong and lean on everyone around you when you need to!Continue to believe in yourself and have HOPE! Tell P and Mom to keep up the great work too:-)thinking of you daily.

  4. Wishes for easy breathing and sweeter dreams to get you through the next round.
    <3 Andrea

  5. I am sending positive energy and hoping that the next few days won't be too unbearable for you. Stay strong and are truly an inspiration to the rest of us!! Love the shirt!

    Love and Roses:)

  6. hi, hon! i am just so impressed and happy you keep writing,... its so comforting to hear from you in words i can picture you saying! sorry about the bad dreams and WAY to be "glass half full" on all of this! (actually, that doesn't even sound right, you're really more like a "yeah, my glass got tipped and i lost a few drops, but so what, peeps!" kinda girl.

    one bit at a time, just like you're taking it. you know you're an AMAZING TEACHER. who ever thought this would be how "teaching" would look, right? you're teaching more than music and more than children. okay, lastly, i love my sleeping mask and have for years. here's to all of us froo froo fancy ladies. all we need now are boa slippers. continued love!!

  7. I've been reading your blog every night before bed - so glad you are able to keep posting.

    So excited for you for the bike! And it sounds like you have the best of the best taking care of you - glad to know you are in such good hands!

    Here's to easier breathing, better dreaming, and continued rocking (love the picture)!

    Sweet dreams,
    Julie <3

  8. Nice Bike, That's pretty awesome to participate in those, I'm really interested in seeing what the outcome of that study says. What do you think? Notice if you have any more spunk days of exercise? =) I like the bright colors in your room, looks like happiness =)Only one more day of Chemo, I'm already praying it's an easy one for you. I'm more than elated to know you are in good care, I've seen bad hospital care and it can infuriate you!

    In case you need some thing to think about besides chemo, transplants and hospitals .... Sieana is freaking 3 months, WTF! I have to return to work this Thursday!!! Needless to say I'm crying like a baby, lol, but 30 days is all, I had to perform a "poopy exorcism" as I like to call it, NOT FUN, remind me to tell you ALL bout that when you return.

    I ate a delicious cupcake today and it made me think of you <3

    All Our Love from JERSEY <3

  9. Laura - LOVE your stories about the scarves - thanks! :-) Don't know if you've heard the saying about "energy flows where attention goes" or "what you focus on, expands" - but that being said, know that we are all focusing on an image of beyond this medical experience as a happy, healthy vibrant woman! Big hugs from California!

  10. Sending my thoughts and prayers to are incredible

    <3 and Roses

  11. You got this girl! Your so strong! We are all praying for you!

  12. Hey Laura! Sending love your way! Loving the blog as always, witnessing your power is an awesome thing.