The Unwinding of the Miracle - Julie Yip-Williams Page 0,87

frequent fatigue pale in comparison to the skin breaks on my hands, feet, and lips from the extreme dryness and the mouth sores. Despite frequent applications of lotions and creams, I would wake up with dried blood caked on my lips and in the beds of my fingernails. However, the mouth sores win, hands down. They are the worst side effect I have experienced since being in treatment. Worse than any nausea, constipation, diarrhea, neuropathy, anything! And that is what my medical team has been truly concerned about, for mouth sores can reduce appetite and inhibit eating and the all-important intake of critical nutrients. The existing mouthwashes and remedies to address the mouth sores have been generally ineffective. A new sore would appear on my tongue, gums, or the insides of my lips and cheeks just as one was about to go away. One sore at the back of my tongue caused burning pain in my ear canal every time I ate. I was outraged at the absurdity of mouth pain traveling into my ears! I mean, cancer can kill you, but must it also play such games?

At one point I could barely speak because moving my mouth to talk was too painful, and I told the girls I could not read them bedtime stories. Water is barely tolerable. Eating has generally become a tortured and slow process, as there is stinging everywhere in my mouth when food enters (although I have to admit the coolness and creaminess of ice cream really soothes the raging fire). For someone who loves to cook (and eat) as much as I do, the pain in my mouth has truly been excruciating and borderline intolerable. At my doctor’s insistence and with my happy acquiescence, I skipped treatment over Labor Day week to give my mouth and fingers more time to heal.

I have been reminded how pain can sap your spirit and destroy your will. Perhaps, to my shame, I just don’t have a very high pain tolerance. Sadly, that’s not something I can change. Pain makes me miserable, as it does everyone. But this physical pain, the emotional pain I was already in, exacerbated by the deaths of my friends, and the stresses of having to deal with the other side effects, drove me into the darkest of abysses.

On a Sunday night, on the eve of yet another treatment and with my mouth on fire, I couldn’t get Isabelle to go to bed and I lost my shit, as they say. I yelled and screamed at her. Josh told me I had crossed the line. I sat on the couch and cried because of the terrible mother I was becoming, because the pain and misery of everything was turning me into a mother and wife I didn’t want to be. I cried into the wee hours of the night, sitting alone in the dark. Never in my life have I cried with such intensity and despair. Never have I felt so weakened and alone. I seriously considered stopping treatment because I didn’t want my children to remember me this way. Desperate for help, I posted this on the Colon Club forum:

For quite a while now, ever since I last posted about my sense of loneliness and solitude, I haven’t reached out to anyone to talk about what’s going on…I’ve convinced myself that nothing anyone can say can comfort me. I’m filled with so much jealousy, bitterness, and hate, I don’t know what to do to let those feelings go. For months I thought I had found peace, but then the most recent scan results came, and my brief period of stability is over. I don’t feel like my husband can understand, nor my friends. The only people who can understand are those who are in my exact position, but no such person exists.

But tonight, I logged in here after a long absence, looking for some relief. Desperate, I suppose. The Erbitux I’ve been on now for a month is causing my mouth such discomfort. It’s miserable. The rash I can manage, so I won’t even complain about that. I’m also convinced Erbitux has caused this persistent floater in my left eye, which makes me want to rip the eye out of my head. If you know my history of vision issues (blindness at birth, blah, blah, blah), then maybe you’ll understand how this would aggravate me and creates anxiety about whether Erbitux might cause blindness or something. Anyhow, tonight I lost my