Sunday, February 06, 2011

One day I will step out of my body, and burst into bloom...

It has been a really rough couple of weeks. I had the PET scan about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.

However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.

The physical reaction was pretty awful. The bisphosphinate (Zeloda) can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had.

Still, I could handle the physical stuff, I think if it weren't for the emotional baggage. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping it wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself.

But sometimes I am in despair. My daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.

Nobody loves chronic. And now I'm learning the difference between chronic and incurable. Or perhaps ultimately fatal, if you want a harder word. Chronic is something that affects you permanently, but to me incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you.

I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.

Fooey.

Love,
grundoon

p.s. Credit to jessica pierce of spidercamp, for the title, originally from www.everything2.com.

3 comments:

  1. Oh, man. Your post made me hug P. extra hard.

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  2. My dear cousin, I truly wish I could wave a magic wand and make this go away for you and Kevin and Tess. I want you to know how much I appreciate that you DO share with us the hardships and how you are feeling (a novel thing in this family, no?). I don't know if I end up saying any more to you that is in any way helpful than if I weren't reading your posts, but I do want to know.
    love and hugs,
    Adele

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  3. Chris, I look at Noah and realize that I was his age when my mother died, and she was 2 years younger than me, and despite having no looming medical conditions, I feel like I'm living on borrowed time every day, and wonder what I should do to make sure he grows up strong and healthy and emotional whole, even if I'm not here. And I do that every day, and I'm not sick, and I'm not in pain, and I'm not in treatment. The load you carry breaks my heart, sweetheart. I don't know if I could carry it with half the dignity and heart that you do. Much love. -Rebecca

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