Making Plans

So I’m up here on Whidbey Island with the dogs this week, just relaxing and enjoying the quiet. I’m working on my calendar and trying to make plans for things the next few months. Even if my scans come back in January as poor, I know we’d just be adding the Xeloda (which is an oral chemo). So there’s a pretty good chance that I’ll continue with my infusions-every-three-weeks plan for the next several months. I don’t know how I’ll be feeling, but I do think that I need to be planning things instead of waiting around to see how I feel. It’s too easy to end up staying at home and not doing anything.

I am so lucky to not have to work or take care of anyone but myself. I think all the time about how I’m feeling so great– and I am. But it’s a totally new normal. I feel great as long as I sleep 10+ hours at night and maybe nap during the day. Bringing in the groceries at Whidbey yesterday made me so tired I had to lie down. I walked on the beach with the dogs for 45 minutes and it felt so good, but that’s pretty much all that I will do today. I’m grateful that I don’t have to feel miserable all the time as I try to work or take care of kids. The hours I can be up and doing things, I get to choose fun things. But it’s not like I’m running any marathons over here. And the scary part is this is the easiest treatment I could or will ever have. It’s never getting better than this.

The death of my support group friend and of Elizabeth Edwards has pulled me out of the pocket of denial I’d been hiding in. It’s so easy to think, “Oh, there are new drugs and I’ll do great for a long time.” While that is a lovely thought and would be a welcome miracle, it’s not realistic. I’ve made it for a year. If I make it for another two years, I will have done very well for my diagnosis. I talk about how I’m going to have a big party for my 40th birthday. And maybe I will. But the truth is I don’t really believe I’ll be here that long.

And that’s okay. It really is. I can’t tell you how many people have said “oh don’t think that way!” But really it’s about THEM not wanting to think that way. What people don’t always understand is that I need to recognize the severity of Stage IV cancer. I need to understand that even the new drugs don’t mean there’s a cure. Tykerb+Herceptin together is big news, and those drugs are helping me right now. But the research is exciting because is shows an average of 23 months until death vs. 16 months. This is not a cure.

I need to recognize this because I need to be more deliberate with the choices I make about how to spend my time. I need to not put things off. I need to take trips and see friends. I need to things now, not plan for a year from now. Because things can turn on a dime and in a matter of weeks or months I could be really sick. Elizabeth Edwards looked great in October. In December, she’s dead. And that seems to be the norm with this disease– you do well until you don’t. Which is a blessing in so many ways, but also horribly scary.

7 thoughts on “Making Plans”

  1. If there is any good side of cancer, I’ve come to conclude it is the perspective it gives you on life…my cancer survivor sister savors each day and never passes up an opportunity to engage with her family & friends. The rest of us (that would be me) fret over trivial day to day issues. Thanks Karen for sharing your writings/thoughts with us, appreciate you and your insight so much…

  2. I am the queen of denial and you are so right on all counts. I just want to pretend
    that you are going to go on forever. Part of the denial is because there is nothing
    I can do to help. I have every email that you, or your mom and dad have sent since
    last November. I have shouted out with joy at the good news and cried at the bad. I I hope that you get many more years with us. Thank you for sharing your thoughts
    and allowing us to go on this jouney with you.

    You are greatly loved.

  3. Karen,
    You are coping with cancer in such a brave way. I continue to be amazed with your strength and grace in a terrible situation. Denial is a way of protecting us from reality that is too hard to face every day; but sometimes your logical brain kicks in with the facts….then we have to keep busy to stop the anxiety.
    Let’s plan a trip a month for 2011! I’ll be your backup whenever you can’t line up a friend. How about San Diego? The Port Townsend retreat sounds good. Maybe you could stay in a B&B so you could sleep better and just join the activities during the day.
    I love you,
    Mom

  4. Your wisdom, courage, and strength continue to amaze me. You bravely state what many of us are afraid to believe or say. I have so much respect for your honesty and for the gift you are giving the rest of us by sharing your journey with us. Frequently in life we fail to realize that “now is later”. Enjoy each day, and be good to yourself.

  5. Your logical acceptance of a very unpleasant situation is a constant source of amazement and strength to me.
    If I am ever confronted with a problem of this size and scope, I will reread your postings and be comforted…………..
    You are truly an inspiration.
    Effie

  6. Hello my lovely friend! Its Christmas …. a time that is either so happy or so difficult…. not sure why but it is and this ear I pretend it is not even here! I watched the movie “Little Women” this morning in my PJs (flannel) – way too hot for that but I put the AC on max just to add the cozy factor! I made popcorn…. and as I layed there curled up I thought of you and how you have taught me to love little things like popcorn, flannel and that iced coffee not only exists can be had anytime of day. But also big things, the value of a good road trip, Carlos’s music, reading and cats…. so crazy that Simba cat is still curled up next to me – the one thing I still have from our college life. And also a very very worn out blue shirt from Eddie Bauer that your mom bought me that I just found in a trunk…. I hugged it and cried. I miss you my dear friend and I am now on a MISSION to come see you. I hope you are doing alright and just know that I love you and think of you so often xxx

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