We didn't do a heck of a lot this holiday weekend. We planned to take it easy and we did. Tracy and the girls did go on a hike today to with our friends the Michaels to Castle Rock in the Santa Cruz Mountains. They had a great time and the weather out here has been fantastic for about a week now. I hate to think of the major drought we are going to have this summer, but I have to admit 73 degrees in January is kind of nice.
Emily is doing really well. About a week ago she broke out with some pretty heavy acne, and we need to check tomorrow to make sure it's an acceptable side effect of the chemo, we feel like it probably is ok since she feels great and the acne seems to be just that. I also remember acne being a side effect of several of the drugs she would be on. Emily is also scheduled to have labs on Wednesday and we are expecting to return to %100 dosage on her chemo, it's been 6 weeks since she was neutropenic and we had to take a break and just now working back up to full dose. The worst of the cold season seems to have passed, especially since everyone is outside with this great weather.
While Emily is doing great, and we are so thankful for it, I want to try to explain what it's like to be a parent at this stage of chemo. It's a mix of feeling and emotions, some justified and some maybe not. We feel happy and excited that Emily is doing really well, but we feel worried and scared that things could change, any day. It's the constant worry that we need to learn to live with, it's something that isn't going to go away March 10th 2010 the day she ends treatment. It's probably a worry that will never go away. I am personally conflicted with how to feel about things, do I get excited she is in remission, knowing full well in the back of my mind that this disease is known to relapse, and just getting into remission isn't the challenge it's if you can stay there. At work, I want to tell my boss and team that everything is getting back to normal, but I worry that if I do, then expectations will raise on my performance, and to be honest I don't have much energy to step it up at work any more than I have done already. I get angry when people at work say "we understand what you are going through" when they really have no clue, and I don't want them to have a clue. So even in good times, I want you all to know that we still need all the support, help, comments to the blog etc to get through this. It's just not as dire as it was last spring, but there is still a major battle ahead of us.
We are super excited that tomorrow our country is going to get a fresh start with a real leader. I am hopeful for so much, but here in the blog I will say that it's almost guarenteed that President Obama will do more for health care that bush, let's hope for increased stem cell research, advancements in technology to help not to kill people, and a way for everyone to have medical care on par with what we are so fortunate to be able to give our daughter. I am looking at 2009 as a year of healing, for the Emily and the Peppers, our enconomy, and counrty. I am full of hope for that. I also believe it can happen.
Monday, January 19, 2009
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5 comments:
Here's to a hopeful 2009 with Obama!
I agree with you Chris...tommorrow is the beginning of a new page in America's history. We all need to be looking ahead to 2009 with the same optimism and positive attitude you have displayed throughout this past year. Emily and your family remain in my prayers everyday, and while the need to do daily updates on Emily may have changed, I continue to look forward to hearing how things are going and will contine to provide support via the blog.
Cathy Breit
We think of you guys all the time and are so happy that Emily is doing so well, we can only imagine the roller coaster you go through everyday. You are such a strong family and we appreciate all the updates and you sharing such personal information regarding your daily struggles and joy. We are so excited for today and the hope of change that comes with it! Definitely a day to celebrate!
I'll be here watching and keeping track of Emily forever and ever. I pray that the worst is behind her, but sometimes I worry about getting too comfortable with her progress. Then I have to say we're taking it one day at a time and I am grateful for every second we have with this beautiful girl.
Love, Grannie
Managing worry is a definite challenge of survivorship. The thought that comes to mind, which I have not mastered myself, is don't approach it as a constant state of mind: worrying or worry-free. In my experience, it ebbs and flows and that is the only constant thing about it. Remission brings its own set of worries that are different from the initial scare and turmoil. You guys are doing a great job of living life to the fullest even IN BATTLE because although Em is in remission, she is still on chemo. So I think you are wise not to expect too much of yourself at work or anywhere.
It's sad but true that things can change at any time. I wish I could say otherwise, you have some idea how much I mean that. So keep processing, keep enjoying the good days and get through one day at a time. It's all we really have anyway. And today? Today was a great day, truly!
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