Penguins and Blue Lips

Two things I learned very quickly in the first month after diagnosis is that everything sucks and I have no control. We’ll call these lessons 1 and 2, respectively.

One thing I learned slowly over the first month is to avoid internet searches about cancer. If you want to spend the rest of your nights in a wide-awake, panic-stricken nightmare, try Googling HER2+ or mastectomy pictures. Trust me, you don’t want to go there. This is lesson 3.

Now, as I learned these important lessens, I discovered something wonderfully distracting: The Rapunzel Project. It came at a very good time. I needed something to focus on that wasn’t related to terrifying treatment options, facing my own mortality, or confessing my illness to my loved ones and watching their hearts break. Any little thing was bound to work.

The Rapunzel Project led me to Penguin Cold Caps. This is a system of frozen gel helmets that freeze your scalp in the hope that chemotherapy will not damage the hair follicle causing hair loss. The type of chemotherapy I will be doing (TCHP) is notorious for causing total body hair loss. I was intrigued.

After a few more days practicing lessons 1 and 3, I decided to test lesson 2 and take some control. We were going to freeze my head and see what happened.

My dad is a blessing and agreed to fund the project. This is an expensive experiment so I was so grateful for the investment. My mom, also a blessing, agreed to become an expert frozen hat assistant.

20160721_175533They said my lips were blue during that first treatment. I couldn’t speak because it was so painful when they put the first one on. Tears ran down my cheeks and I held my hands in prayer position, something especially unusual for me. But, we did it. We even got better at it the 2nd round. And I still have all my hair…at least for now. I have completed 2 rounds of chemo. I’m 31 days from the first treatment.

Lesson #4: Do what you can, no more, no less. I needed that little bit of control and I took it. You can’t imagine the joy I felt reading the Rapunzel Project and Penguin websites those nights alone at my house before treatment started, out of tears and running low on wine. There was something I could do, something I could try! That kind of freedom is a lesson in itself.

For those reading this about to start this path, everything does suck and you don’t have much control. You already know that. But, don’t feel ashamed to distract yourself, even in vanity. These little things can mean a lot.

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