My ancestors came over on the Mayflower. I’m sure there were days on that boat when there was no wind, maybe even weeks, and they wondered if they would ever step on land again.
I reach for whatever hope they clung to as my own windless sails sag at this point in the journey.
My last doctor’s appointment went about as I expected it would. My doctor, animated, on one hand telling me the next step is my call and on the other hand, red-faced, imploring me to dive into the dark magic of life on chemo.
Not that he’s offering any magic. Just rearranging the poison bottles on the shelf, basically. The first one is a sort of chemo light, It allows me to keep my hair, although promises some ugly skin rashes, possibly swollen ankles, sore, hard-to-walk-on feet. He tells me it may keep the cancer at bay for a year. Maybe longer. Maybe not. He assures me there are plenty of poisons on that shelf to slow death down. That’s how this next step feels – like I’m going from extending life to slowing death.
To his credit, he spent a long time answering my questions, In the end, though, he was pretty angry with me when I asked not to make any changes until January, when hopefully I’ve gotten word from the two research hospitals I’m pursuing for a second opinion – Dana Farber and Memorial Sloan Kettering. While he encouraged the second opinions, he villified the idea of staying on treatment that isn’t working. When the appointment was over, he didn’t ask to see me again.
I came home and dove into fast-tracking my appointment at Memorial Sloan Kettering, holding out hope that I’ll qualify for at least one of their trials. It turned out, my insurance wouldn’t cover the appointment, let alone the expense of a trial. Is there an emoticon for feeling overwhelmed, helpless and on the verge of hopeless?
That was the day before Thanksgiving. I took a deep breath and decided it was a problem I could solve later, after the holiday. For now, I’m here, I’m healthy and life is still good on many levels.
A few days later, I called my insurance guy and upgraded my plan to include Memorial Sloan Kettering. Now I wait for it to go into effect before I can set up the appointment.
In the meantime, I work on releasing this torrent of emotions I feel – resentment, anger, sadness, overwhelm, victimized. I try to piece together a new plan. A stricter diet, perhaps, more meditation. Alternative therapies. .
I read about people who have miraculously cured themselves of cancer. I try to figure it out.
I try to make peace with myself and the situation. An unruly disease, a doctor who can’t cure it and would be quite happy if I became someone else’s problem. I try to think about what future Liz would want – because that’s really what’s before me. There’s an expiration date stamped on me that no amount of medicine will change – at least in today’s cancer world. My only decision is do I want to forgo treatment and go out writhing in bone pain or do I continue my descent down the rabbit hole of chemos which will degrade my body and ultimately lead to a new cancer to fight and limited means to do it?
I’ve tried to ask future Liz what she wants. She’s upbeat, unrelentlingly so. She doesn’t give me many answers. Just tells me not to worry, that it all works out. I’m not quite sure what planet future Liz is living on, I just wonder if I’ll be able to afford the ticket to get there.

Liz Johnson

Liz Johnson

Writer. Blogger. Advocate. Breast Cancer Conscript.