V's Version

I am just feeling vulnerable and tired and somewhat defeated. Well - not defeated - but kicked down. I cannot tell you how disappointed I was to get the news yesterday. I have battled cancer and PNP and pneumonia and sinus infections, strange rashes, corneal damage, headaches, pulmonary problems and various other infections. I have been so sick for so long. There are some periods of glorious remission and of laughter and fun and going about business as usual but I am never (in my own thoughts) far from the reality of struggle.

I mourn the ease of taking a nap, the simple joy of smelling the forest, the ability to cry tears. I mourn the taste of chocolate and sweet potatoes and the smell of coffee and oranges. I wish I could forget pain for a day - for an hour - for 15 minutes. I wish I could live a life without a bottle around my neck, without having to carry my medical cards with me everywhere - just in case. I wish I didn't know the first names of each of my eight specialists and surgeons and that they didn't know mine. I wish the Cinderella story had ended in Hawaii in 2006 with "..and they lived happily ever after."

OK - I suppose that last one is mostly true. But any married person knows that the word "happily" must, by definition, include "happy to make it through some of the rough times" right along with the joy and contentment that the fairy tales promised.

I wish my health struggle / saga was tidy. Done. Wrapped up. Easy. People who knew about or find out about the cancer often steer the story with the question, "But it's all in remission, now, right?" You have no idea how often I hear that. Everyone wants a happily ever after. And, yes, technically, that's true. I am very lucky and grateful to have a cancer that responds well to chemo and can easily be detected so that all I have to do is hit it with some chemo and it goes away again. I'm good on that front. If only that was all there was to deal with.

I distract myself with communication and service. That's how I deal. In addition to trying my best to be a good mother and wife, I do my part at church and I am trying also to be a good citizen. I am currently addicted to change.gov where I check for daily updated posts and videos on the transition to an Obama presidency. I am fascinated by the transparency. We really do hold the world in our hands. I'm glad to be able to see it so clearly.

Meanwhile, the interactive live piracy map shows that my father's ship is threading through an area that has seen over 50 pirate attacks in recent weeks - most notably the one yesterday that was worth $100 million in oil. The desperate pirates are getting more bold and are taking on bigger and bigger ships. As the world gets smaller and more transparent, the things to worry about are easier to see.

And speaking of transparency - so many of you have told me how much you appreciate mine. I want to thank you for hanging in there with me. I want to thank you for the well wishes and the prayers and the kind words. I want to thank you who come here for the first time for reaching out. I am not always so good at getting back to people but your efforts do not go unnoticed.



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Labels: cancer, gratitude, hope, immune, lymphoma, optomistic, Paraneoplastic Pemphigus, pirates, PNP, purple, support system, women