since my PET scan in early January, which was “mixed” in that there was some growth, some stability, and some regressions in the various tumors in my lungs. My oncologist and I had agreed that notwithstanding the growth we would continue with the weekly Erbitux infusion and 5-FU push for the time being, but that we would rescan in six weeks as opposed to the more conventional three months. The February rescans showed essential stability, as compared to the January PET, but what was more alarming to me was that they showed “significant” growth from the October CT and MRI.
The different types of scanning technology offer different pros and cons, which I don’t pretend to fully understand. I generally get PETs every six to nine months because they can detect disease in the bones as well as metabolic cancer activity in nonsolid areas (e.g., the peritoneum) and cover a more expansive area, from neck to midthigh. While there is a CT scan connected with a PET, the image quality is inferior to that of an actual CT and MRI. All this is by way of explaining that comparing a CT/MRI to a prior CT/MRI is more accurate than comparing a PET to a CT/MRI. Therefore, the change from October to February was more relevant (and disturbing) to me. February’s scans showed a couple new tumors and growth of about one to three millimeters in a few others. The MRI also showed an enlarged lymph node in my retroperitoneum that could be cancerous or benign inflammation—radiologists couldn’t seem to agree on which. As I had suspected, the Erbitux and 5-FU were starting to fail, if not already completely failing. My oncologist and I agreed, however, that we would hold off on changing treatment until I returned from an upcoming vacation, after which I would rescan and we would decide on the next treatment. The last things I wanted to deal with on my vacation were unforeseen side effects or complications.
I came home from that appointment dejected and upset (although not as upset as I have been in the past—you get used to bad news after a while). I was lying on the couch when I asked Isabelle to come over and give me a hug. This is the conversation we had:
Me: Isabelle, Mama is getting sicker.
[Silence for a few seconds as she looked at me contemplatively]
Belle: Mommy, how old are you?
Me: I’m forty.
Belle [with no hesitation]: That’s old.
Me: No, not really. There are lots of people who live until they’re eighty or ninety.
[She looked away from me, staring at the TV for a good long time, and then she turned toward me again and looked me in the eye and said]
Belle: Mommy, you’re not gone yet.
I gave Isabelle a big hug then, marveling once again at this child who in other contexts acts like any other four-year-old, but when I need her emotionally, she becomes a sage and speaks as if she has lived before, as if in some part of her bottomless soul she remembers the lessons from a previous life.
33
Insanity
For the first time, I find myself ever closer to a lonely insanity. I endeavor to give voice to the most painful and, some might say, the most humiliating and unflattering aspects of myself as I flounder through the journey that is living with cancer—the rage, jealousy, bitterness, terror, and sorrow. While I write and share the ugliest parts of this journey in a way that I could never verbalize accurately or completely for my own cathartic reasons (among others), I share also because I know that such brute honesty validates the dark emotions of those who feel as I do as they stumble through their own trials, whether they be cancer-related or not. And in that validation, you and I, we, regardless of whether we’ve ever met in person, find a connection, a oneness in our suffering that speaks to the universal human experience, which transcends class, race, culture, time, and space.
I want you all to know that it is to this connection that I cling as the loneliness of this journey threatens to swallow me. And that is even as I found myself posting pictures on Facebook from our glorious Sicilian vacation—wandering around a snowcapped volcano, the children dancing and twirling through piazza after piazza, exploring two-thousand-year-old ruins under the life-giving Mediterranean sun, basking in the fragrance of blooming blood orange trees, gorging on the freshest of gelatos and granitas. Then the weekend after our return, I