a good learning experience

If you're friends with me on Facebook you might have seen my post yesterday morning that Rion wasn't doing so well and we needed prayers for mental & physical strength...I am very happy and relieved to report today that he is doing much, much better. Praise God!

Yesterday was by far the worst day we've had since starting treatment but it was also a good learning experience for us. It's hard sometimes to remember that Rion has limitations even though he may look and act "normal." We are constantly having to re-adjust and re-think our priorities and how we are going to manage our lives for the next year+ while Rion is on treatment. Unfortunately we made a simple mistake of over doing it which left Rion totally zapped of energy which in turn made him more susceptible to the side effects from starting his new chemotherapy dosage on Saturday night. Last week would have been a bear for anyone- going up to Duke an back in 36 hours (725 miles round trip,) going to a cook out Friday night and staying out later than usual, and then staying busy all day Saturday and once again staying out later than we normally do Saturday night. On top of all of that, it stormed at our house Saturday night and neither or us were able to get any quality sleep throughout the entire night. When my alarm went off Sunday morning (we were heading out of down for the day to visit family) Rion's body pretty much said "no way jose!" He was so weak he could barely get up to walk across the house and all he wanted to eat was a smoothie because it was bland and easy to eat. He slept the majority of the day yesterday waking up only to eat 1/2 a bowl of soup for lunch and the other 1/2 a few hours later. He did get up for about 3 hours yesterday evening and ate a really good dinner but was ready to go back to bed almost immediately. He slept soundly last night and woke up this morning looking and acting much more like his old self!

From the looks of it the fatigue is going to be even worse with this regiment than it was during chemo/radiation. I can't describe exactly how debilitating it is because I can't honestly grasp it 100% myself. But I can say that Rion looks and acts like a totally different person when he's feeling so poorly- he moves & talks slower and it's clear that even thinking takes more out of him than it normally would. This is very hard for me to watch, helplessly, because for the last 7 years I've gotten accustomed to Rion's quick thinking, always on the go personality that often made me feel lazy for my lack of energy in comparison to him. (and if you know me, you know I am NOT a very lazy person LOL) It is just in our nature to stay busy all the time and try to pack the most into each and every day. But that has to stop, he (we) have got to learn how to say "no" more and realize that he (we) are not the same as he (we) were even 6 months ago. To us it feels unnatural, we have always packed our evenings and weekends with as much activity as possible because that's what makes us happiest. Or it was what made us happiest. Yesterday's hang over from all of the fun & activity over the last week was a not-so-subtle reminder of this. With all the extra stress I'm having to deal with right now it's clear to me that I also need to start taking more time to just relax and re-group. I have so many balls in the air as it is, I'm starting to feel like I'm going to have a break down if I don't quit taking on so much. It's just hard, because we're having to say no to things we want to do just so we can manage the things that we HAVE to do. But I guess it's just another component of cancer treatment that no one thought to enlighten us about up front- the constant struggle to return to normal but to be ever mindful that normal isn't what it used to be.

Thank you all for your thoughts and prayers yesterday and thank you for your understanding that when we say no to an invitation that it's nothing personal but we're going to have to start being a little more selfish with our time. After the next year is over we'll have the rest of our lives to go and do and see but for now we need to focus on Rion and getting him through this 12 months with as little pain (physically and mentally) as possible. We would also both ask that you respect our decisions that we make in regards to Rion's treatment and what WE think is best for him. We understand that not everyone would choose to do the things we are doing and we were probably just as judgemental and skeptical as anyone before this happened to us. But it hurts, more than anyone knows, when our friends and family question our decisions and imply that we are not doing what is best for Rion. Please keep these opinions to yourself: it is not going to change our minds and will only place more stress on us. We don't make any decisions lightly but through prayer and the advise of our medical teams we are confident that we are doing everything we need to be doing at this time.


God bless,

Emily