CEA results is more stressful than hearing my scan results, probably because my CEA has always told me what to expect in the scans. For those of you who don’t know what it’s like to find out what your CEA is when you have metastatic cancer and the result is not good, it’s like having my heart collapse into my stomach; the walls close in and I feel a primal panic and desperation I imagine an animal pursued by a predator must feel as it realizes it’s caught.
Curled up in a fetal position on my bed was how my children found me after I had clicked on the CEA link. Belle asked me why I was crying. “Mommy is just really sad,” I told her. My sweet and uniquely perceptive girl then gave me a hug and declared, “Don’t worry, Mommy. I’m still going to love you when I grow up.” You see, I do fear that in my absence, my children’s memories of me will fade and they will love me less and less over time. Her words made me weep with a renewed vigor. Josh came home shortly thereafter. I told him about the CEA results and cried into his neck. He acted so calm and strong for me even though I knew he was upset. Even so, sometimes I think the intensity and ferocity of my emotions are too much for him, especially since he has to come to terms with his own. He urged me to call my sister or my best friend, anyone. The only person I wanted to talk to was my therapist, but she was away until September. Usually, as expressive as I am in writing, I have the same compunction to verbally unload my heartaches to those closest to me in life (besides Josh), because I know that for me the process of verbalization is healing. But not now. I didn’t and still don’t even want to talk to people who have my disease, at least not anyone who is in a better position than I am, and I imagine anyone who is in a worse position doesn’t want to talk to me. My self-imposed reclusiveness and isolationism is partly because of the jealousy and the hate.
I cannot imagine anyone saying anything to me that would be remotely helpful or comforting. I don’t want to hear about the promise of immunotherapy. I don’t want words of sympathy. I don’t want sage words of advice about how to live the remainder of my life. I don’t want to talk about it. I don’t want to answer any questions. I don’t want to have to be forced to explain anything to anyone. Whatever explanations I give and whatever information I divulge must be on my terms and at my initiation, not because someone asked or because I was forced into some social interaction.
Perhaps isolation, at least emotionally if not physically, is what happens as you get closer to death, as you understand more powerfully than ever before that this journey to the end is one that must be made absolutely alone. It feels as if whatever comfort there is will be found within, rather than without, from private conversations with my innermost self and, when I can muster belief, the gods.
I heard back from the surgeon in Germany about the laser surgery. I now have too many mets in my lungs, forty in each one, and too many are centrally located. I am inoperable. This laser surgery is supposed to be able to resect up to one hundred mets in each lung. It was sickening to hear that I’m not even a candidate for it, more sickening than hearing about yet another CEA rise. The other surgeon, in the United Kingdom, never got back to me. I see no point in pursuing him further since he’s a student of the German surgeon, and I can’t imagine his opinion will be any different. I suppose that’s 24,000 euros saved and I won’t have to spend weeks away from my children. That’s what I told myself, anyway, to make myself feel better.
I’ve been crying a lot, in bed, at the gym, during acupuncture, in restaurants. It’s not as bad as it was in those dark days of December and January. I’m still engaging the world. I acted relatively normal at Belle’s fourth birthday party. I have even managed to see a couple friends. I still laugh and think a lot about other things besides