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A call for your stars

Delaney asked me not to kiss her tonight.

She explained that my face was too scratchy. Between the dryness and the Vectibix-driven facial hair I can’t seem to take off fast enough, she’s probably right.

But then when I went to give her a hug, she winced.



Can this be over yet?

Last night, I tossed and turned until 4 am. My skin was too itchy, my fingernails and toenails too painful, and my head too filled with thoughts of whether I’ll be on chemo the rest of my life and if so, how long that might be. My hair had been falling out all weekend, leaving a two inch strip at my hairline that looks like I decided to go all bad ass and shave it. Feeling semi-crazy, I seized a handful of it and thought maybe it would be less heart breaking to just take it all off.

I finally woke up Per, to cry and yell and grieve my hair, my skin, my life. He scratched my back and dried my tears and stayed awake with me until I fell back to sleep.

When I woke up late this morning, I wanted to pull the covers over my head and go back to bed. I did for a while, but I had work to do; so I got up and headed to the kitchen, only to have Per shout suddenly for me to stop: I had unknowingly been dripping blood from my cuticles.

The other day when I was walking to the bathroom, I noticed my feet hurt. When I sat down to inspect them, I saw that both of my heels had split wide open.

This is me on “light” chemo.

My biggest fear right now is chemo for life. I have chemo again tomorrow, and then a scan.

My last PET scan looked good—no evidence of active cancer. I’m not sure we ever shared that.

But we are working without much idea of what we are hoping for. I thought the clear PET would mean something—that I would be ready for surgery or maybe even that I could stop chemo. But Dr K’s cryptic email said only, “no surgery yet, maintain chemo.”

My Northwestern oncologist doesn’t even know why anyone thought surgery was a good idea in the first place. “There’s nothing active there—and it’s location would require a big part of your liver to be removed. That is an aggressive surgery when there’s no active cancer and your liver is still in rough shape.”

When I told her I knew there was no cure without surgery, and that I was worried I was on a path toward chemo for life, she just said she thought that chemo was my “best option right now.”

I mean, great news that there is no active cancer, but it’s less exciting a development if the chemo still needs to flow.

Today, my mom—who quarantined for two weeks so she could be with us for one—took the twins aside to explain why I was feeling sad and frustrated. She told them that sometimes crying purges the pent up feelings that come with being sick for so long. I hadn’t realized that’s why Jack was checking in with me all day—am I ok, do I need anything, would I like a piece of his apple, how about a hug?

She pointed out what a good example Jack has in Per and the way he takes care of me, takes care of all of us. And I feel a little better hoping that someday, what Jack and all the kids are getting today will make them better spouses, better parents, more empathetic caretakers of their loved ones than they may otherwise have been.

Still, it’s hard to keep putting one foot in front of another when everything in your body is begging for a break. You’re so brave, they tell me. But it doesn’t feel like much of a choice.

So I’m bracing myself for tomorrow; and hoping against hope that my next scan will come with some good news from a treatment perspective.

I could use some stars tonight, to light my path forward. I know you’ll send them, and I know I’ll wake up feeling better than I did. Thank you.

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