my long-ago ideas about the balance between good and bad. In a world where I have no control, what choice do I have but to talk, scream, rant to, and beg of God? I tell him, “If you’re going to do this shit to me again, if you’re going to give me more shit to deal with in my life, fine. I can handle it. You know I can. But my husband, my children, my parents, my siblings, everyone I love—leave them alone. Dammit! Leave them alone! Do whatever the fuck you want with me, but don’t you dare touch them!”
A woman in a support group told me that my deals with God are my form of prayer. I never thought of them that way, since I’ve always been so adversarial with God. But prayer or deal, he’s answered and kept his end of the bargain once before. I obviously can’t tell God to do anything, and there are obviously certain inevitabilities in life, like illness and death at a ripe old age, but God knows what I’m talking about, and I hope he holds up his part of the bargain this time around, too.
7
CEA, PET, MRI…
As previously noted, my life is numbers now. Probabilities, data points, expectancies. But when you have cancer of the gut, perhaps no number more governs your sense of well-being than the number that reflects the level of disease in your blood. Your CEA, it’s called. That stands for carcinoembryonic antigen, which is a fancy term for a specific protein released by tumors, especially those found in the colon and the rectum.
When your CEA drops, the human impulse to hope makes you feel better. When your CEA rises, it can make you feel even more acutely than usual just how much your path might be starting to diverge from the path of the living.
Four months after diagnosis, my CEA was 19.8. This reflected a less than 1-point drop during the second month of chemo, whereas it had dropped 6 points during the first month. Despite everyone on the colon cancer forums and support groups saying that the CEA is a notoriously unreliable tumor marker and that it can go up during chemo, I was upset. In part, I was upset because I’m an overachiever and I like to get the A+, the perfect 100. When I had gestational diabetes, I was obsessive about getting my glucose levels to the optimal numbers through diet, exercise, and then insulin injections, and I delivered two very healthy and appropriately sized babies into this world.
But mostly, I was upset because I was convinced the CEA level not going down fast enough was suggestive of the “burden of metastatic disease.” I asked to speak to the oncologist after I got these results. He took a few hours to call me back, so I texted my UCLA surgeon (who wasn’t even technically my doctor anymore), and he called me within minutes. He said that obviously, we want to see the CEA lower, and that for my and Josh’s peace of mind, I should have a PET scan. PET scans involve the introduction of glucose into the body combined with a radioactive tracer. Cancer cells consume the glucose, so the radioactive tracer lights up with the metabolic activity produced by the cancer.
I should pause here to mention for the benefit of other cancer patients that a good number of institutions (including Sloan Kettering) do not believe in PET scans (at least for colon cancer), on the theory that CT scans are more effective and that PET scans are more likely to produce false positives. When I went to get my third opinion, at Sloan Kettering, I was told that not only do they do solely CT scans but they do them only after treatment is completed (unless there are symptoms that would prompt earlier scanning).
My oncologist agreed with the UCLA surgeon. He told me to come in the following Monday for another CEA test, and based on those results, we would proceed with the PET scan.
For a week, I mulled over my 19.8 CEA and let it fester. It got me down. I had a few crying episodes, which is unusual for me these days. Josh played our song (Joshua Kadison’s “Beautiful in My Eyes”). He had sung it to me at our wedding reception. I sobbed hysterically, thinking back on that day full of promise and glorious possibilities, when we made vows about staying together through sickness and health