Monday, July 27, 2009

Radical Life Changes

There's less than a month before school starts, and I won't be home-schooling. That leaves me feeling confused about what life will be like for me come fall. I have some definite goals, to exercise and continue w/ PT, to provide more variety and nutrition in meals, to spend extra time w/ Dave, to attend a Bible Study, and to be involved in the kids' schools. I may do some extra writing if I get inspired - I've always wanted to write articles and such based on my personal Bible study at home.

One word I would use to describe myself is methodical. I guess that could conjure up different ideas for different people, but for me what it means is I like to pace myself, I'm not a super-energized get it done quick type of person. Rather I like to take my time and pay attention to detail w/ whatever I'm doing. You would laugh at me if you saw my process even in writing, I read and re-read and make sure my thoughts are expressed to my satisfaction. I do a lot of editing as I'm writing. Anyway, life the past six years (and even before to a lesser degree), has demanded of me that I fly by the seat of my pants and not take my time the way I'd prefer. With the changes that are coming, I think I'll have a little more freedom to be that way, hopefully I won't get lazy. I want to be intentional and focus on what glorifies the Lord and builds up my family, church, and community.

Not only myself, but the rest of the family is going through some radical changes. Ethan starting college, Bryan branching out w/ his music and exploring where God is leading for college, Katrina starting "classroom" life, Samantha doing a full day at school, and Dave trying to manage life with us all in our various stages. He's full of wisdom and does a good job keeping us all on track.

Well I'm actually very exhausted, I've been struggling w/ major tiredness most of the day and so it's been hard to write. But I need to be sitting to rest my leg so I thought I'd give it a go.

Friday, July 17, 2009

Brief Health Update

I'm walking and standing great 90 percent of the time. Sitting can be a challenge if I'm not in the right position. My leg still stings a little bit off and on when I'm on my feet, but no more major stiffness, unless I'm very active physically (i.e. breaking my PT rules). When it starts to act up, I ask Dave to do a leg pull before it gets bad.

Medication wise, I visited my neurologist a couple weeks ago and she changed the medication I've been on since the ER; it's not intended for long term. She switched it out to a low dose antidepressant that's supposed to help w/ twitching as well. The transition was rough at first w/ extra tiredness but I think part of it was withdrawal from the old medication now that I'm feeling more normal. Since I had trouble she put me on a half dose and today I'm doing the full amount. I expect I'll be a little extra tired the next day or so and then adjust. I counteract w/ caffeine - not too much :).

The other thing that happened w/ this new med was it didn't interact well w/ one of my others, I started feeling more spaced out. I was relying on that med for nerve pain, and since this new one was supposed to help w/ that as well, I cut down how much I take since the amount was up to me. That did the trick.

Bottom line, I'm feeling mostly normal most of the time. Yay! But I still have major activity limits. Boo. But I'm doing a 15 minute workout on equipment at the club 3x a week which seems to be helping overall. Yay. But I'm still pretty dependent on meds. Boo. I take 4 meds and 4 supplements.

Ok, this was supposed to be very brief so BYE!

Thursday, July 9, 2009

Sister's Keeper

I heard that a cancer support organization recommends family of cancer patients not attend this movie because it gives such an accurate portrayal of the world of cancer. I've also heard that the book is better, or at least is very different. I don't expect I'll pursue either for now. I'm not sure how other people who have read or seen it will perceive our own experience, but one thing I know is there are just parts that can't be portrayed or described, the only way you can truly know it by living it.

Something else that got me thinking on this topic was watching an episode of "America's Got Talent" last night. The woman at the end was amazing - she performed opera style which isn't something I'm necessarily drawn to but it came across very well. When she finished, the judges praised her, and then she shared she was in remission from cancer. I found it interesting that the judges then became instantly enthralled with her and said she not only had amazing talent but was an amazing person. Maybe what they meant was that she still pursued her dream, didn't let the potential threat of the illness keep her down.

People have treated Ethan that way as well. You become an instant superhero when you've had cancer. And it's true - being a cancer patient is an incredible challenge, and I commend Ethan for persevering so well. At the same time, he had no control over what happened to him and HAD to deal with it.

That being said, family members are faced with a lot as well and are treated with increased respect, but I'm pretty sure any family member you talk to would say the respect and attention isn't worth what you go through. That's not to say that good things don't come out of it, they most certainly do. But the way others view you isn't one of those things. Whenever I hear of someone who potentially might have cancer, I pray with all my might that they test negative. I don't want them to have to go through it. I cried when I found out Samantha's classmate's mom had lymphoma, someone I barely know.

So what's the hardest part? What a tricky question. Getting the news, being in shock, processing all the treatment info and meeting all kinds of personnel, watching your loved one suffer, fearing the outcome of treatment, living in a strange house in a strange city, sharing a kitchen w/ others....

For me, the best way I can describe it is loss. Loss of innocence, security, routine. And being that in our case it was a teenager, watching him lose so much at a point in his life when independence was w/in his grasp. That really hurt. Not only was I worried about whether he'd be okay physically, but in all of life as well. One thing that really helped was having Caringbridge and having lots of visitors in Memphis. It helped us keep connected to his "real life" - we had to remind ourselves that there was hope and that the cancer wasn't his identity.