I'm sitting here with my pups again, just finished watching a movie on Lifetime with my mom about Munchausen by proxy syndrome (where the parent/caretaker keeps a child sick to get attention for themselves)...she assured me she didn't cause my illness. :) Yah, I'm pretty sure you can't do that with leukemia! Remember in "The Sixth Sense"? That was one of the creepiest scenes, although there were lots of creepy scenes in that movie...great movie if you haven't seen it, despite the creepiness. Ronnie would see the actress who played the mother in that segment fairly frequently in one of the restaurants in NY, and he says everytime he saw her, he couldn't help but think "You made your child sick...I don't want to be near you". hahahaha
Anyway, I digress. I went to my oncologist's office today, and got several questions answered regarding little details with my care: how can I get Heparin to flush out my Hickman every day?; is it normal to still have some bone pain from the growth factor (yes, it is)?; can I take a steroid dose pack to help my ear?; can I drive?; will they do a bone marrow biopsy on Thursday to make sure I'm in remission (most likely); etc. I felt tired just having to ask all the questions, especially after just getting out of the hospital Sunday. Although I did my laps every day, I wasn't out and about like I was yesterday and today. I didn't climb stairs, I didn't play frisbee in the yard with my pups, I didn't do any laundry. Even though these seem like small things, after being in the hospital for 3 1/2 weeks, I noticed that my legs felt a little weaker, I felt overwhelmed, and standing for any length of time made me feel a little nauseous. This could be for any number of reasons: the combination of my different meds, the chemo, the fact that I'm moving around more. So I'm discouraged right now, and I truly wonder when and if I will ever feel like myself again. I asked myself that lots of times back in '05 and '06, but last year I did a half marathon, and I did it pretty quickly! So, I know in my heart that at some point in the future, I will feel myself. I think the many uncertainties are worrying me right now too...when will I get my transplant?; where will I get my transplant?; will my pups and kitty be ok without me?; will this make my family too tired? I lay in bed last night, and I said a prayer, to God, and to my family and friends who I know are looking out for me from above. I told them, that although I missed them, frankly I had no desire to see them anytime soon, no offense. :)
Then I tried to pinpoint my fears and figure out the best way to deal with them. There's not much I can do about the where and when of the transplant (we have to iron out the details of visiting, and I have to get rid of my ear issues), so I just have to wait and imagine that the best possible care is awaiting me somewhere, either in Boston or Seattle. Then I thought about the chemo. Not much to do there except try to keep up with my laps, visualize the chemo taking out any remaining bad cells (via Mariano Rivera), and take each day as it comes. My next fear was radiation. I have no idea what to expect with that, and I elected not to do any research about it, so I will visualize the radiation helping to prep my body for the transplant...I haven't figured out a visualization technique for that yet, but I'll keep you posted. Finally I thought about the transplant itself. What can I do to help reduce my fear? Not too much except visualize. So I thought, "what should I visualize for the transplant? I could visualize filling up a gas tank, you know, giving me energy to get out and hit the road", but then I thought "gas runs out, and I plan on using Laura's marrow for a very, very long time." So then I wondered "well, maybe I could be a flower and Laura's cells can be like the water"...you know how flowers gradually suck up the water to keep themselves alive and beautiful, but I thought that might be too abstract. So, I'm going to stick with the little circle guys with top hats and canes, jumping into my blood and making themselves at home, and I'm going to imagine my body as a very welcoming home...it'll set out the red carpet for all of Laura's cells. So I may still be afraid, but I'm figuring out ways to deal with it. Now I'm watching "Will and Grace" and that always makes me laugh, which ALWAYS feels good.
I want to make it clear that it IS good to be home, it's just different right now. It's pretty quiet here...in the hospital, you get used to nurses, assistants, and visitors coming in all the time, and even at nighttime, there's a comforting buzz, so you know if you have any concerns or problems, someone will be there to help you right away.
OK....enough with the worries and concerns. One very positive story I wanted to share with you is about my friend's dad who did a golf decathlon in my honor yesterday. Yup, you read right, a decathlon which means ten rounds of eighteen holes of golf (in one day!) The event is sponsored by GolfStyles magazine, and the participants raise money for Children's Hospital. Here is a link to a website he had set up for me so I could check his progress on the course yesterday: http://www.golfstylescompetition.com/DecathlonJulie.html Thank you so much, Mr. Morgan!! I looked at the website a couple times during the day, and again just before I went to sleep last night. As I wrote before, I was feeling worried about the future, but looking at the website reminded me about the importance of being strong. The pictures of you out on the course made me smile, and I was really surprised and touched by the personalized website. Congratulations on another successful year out on the course (is that the correct lingo?! :) )! I feel really honored to have been a part of it, and I feel lucky to have friends (well, actually, you and Mrs. Morgan are more like extended family) like you. I'll think of the decathlon when I need to be inspired to push through even when I'm tired.
So I'm still pretty bad at e-mailing, but I'll work on it. Give me a little more time to get used to my new schedule, and I'll get better!! :) Hope everyone's doing well.