If I ever feel better

Every 3 weeks, the day before the chemo treatment, a dark cloud settles over my otherwise love-filled, supported, happy life. Describing it is difficult. Now that I’ve finished round 3 and am at the half-way point for chemo treatments, I see it more as a Pavlovian response, more emotional than physical.

Harry Potter fans would know it as a dementor, sneaked away from Askaban, searching me out, sucking away my happiness until it appears I may never feel it again.

A friend lent me Neverwhere by Neil Gaiman. He describes going into a darkness so thick and palatable that you breath it, feel it on your skin, taste it. You walk through it like fog. Some don’t make it out to the other side. That’s how this feels.

I cry. A lot.

I’m dealing with cancer well though. I daresay I’m resilient. But each treatment my optimism and positivity are tested for a few days and, dammit, if chemo isn’t stronger than me. It gets its way.

One reason for this is that cancer has taken away all my nifty coping mechanism. My fitness routines that doubled as meditation are no longer an option for me during treatment (aerial silks, yoga, dancing like a fool in my living room). Alcohol is seriously restricted. Even comfort food like enchiladas and filet mignon are no longer in my arsenal. It is a cruel reality, even for a person I used to consider tough as an ox and multifaceted as a diamond.

I’ve watched all my castles fall and they were, indeed, made of dust after all.

Fortunately, I can lean on my friends and hopefully all this mess will make me laugh someday.  When it’s all over, I’ll let you know.

 

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.

Old Pros

Do you remember the worst day of your life? Prior to this I didn’t. I had a vague recollection of a few really terrible experiences but I couldn’t put my finger on exactly what day it was and the precise itinerary.

The day of the biopsy I told my boyfriend that I was currently experiencing the worst day of my life. But there was a worse day after that and an even worse day still.

I think now that we’ve begun treatment and that most of the shock has faded away I can catalog those earlier days as the worst. The way they described my illness and the way it would be treated was numbing and sharply painful at the same time. Learning about what would happen to me was far worse than what is actually happening to me. To be certain, the mind is far more capable of pain than the body.

I was in the chemotherapy room last week with my friend. We were cheerful, chatting and laughing. It was Friday. In walked a woman with her daughter. She was recently diagnosed and was doing what they call a “chemo teach.” Thinking back to my “chemo teach,” I felt enormous empathy.

She looked pale, mechanical. Her daughter was doing all the talking. Her daughter was carrying the binder full of terror the oncology nurse gives you and was taking notes. Her daughter smiled at us.

My friend and I felt like old pros. We both remember that day well. She had asked all the questions, carried all the stuff, and took careful notes that day. I could barely work a pencil. She had chatted politely with the other women in the chemo room. When I had opened my mouth to speak, tears came out instead. It was the worst day of my life.

It was a relief to know that was behind us. Here we were, in the very room that had scared me so much, giggling about nipple reconstruction and planning champagne for lunch. We had gotten past that terrible day.

I wouldn’t have been able to convince the woman having her worst day that it gets better so I didn’t try. Instead, I told her that I was using Latisse to try to keep my eye lashes during treatments. “I hear it works,” I said, like I know all about it. I saw a quick flash of curiosity in her eyes. I hope I was able to give her something to think about, instead of all the scary stuff, on her drive home. I hope her worst day is behind her.