Yesterday was Scan Day. For those of you who have ever had worrisome alien things happening in your body or the body of someone you love, you know what Scan Day means. For the rest of you, well, Scan Day is a test. A Life Test. Remember your SATs? Number 2 pencils, a graphing calculator, weeks of nailbiting. At some point you leave the whole thing in someone else’s hands because you have no choice. The test is over. You did how you did. No going back. But when the results envelope comes you rip it open, gnawing at it, tearing it in your haste to find out where you stand. To find out what your future holds.
My envelope came. I’m not going to Princeton. Not UC Berkeley. Not even a state college. I think I might still get into community college if I pull my grades up.
See, in my head I failed Scan Day.[Perspective: my radiation oncologist said that if I were getting chemo, they’d say the chemo is working. Well, la di fricking da.]
There are 3 tumors in my pelvis. One big and two little. The Three Bears. I also have a wee spot in my lower lung. A Bearlet. All of these cancer cluster bears are about the same size now as they were in January, except that Pelvis Bear #3 wasn’t mentioned in January so we don’t know if it’s a new bear since then or if someone missed it. (Doctors shouldn’t make mistakes but they do and they’re awfully cavalier about it. That’s a whole other post. Carry on.)
The two tumor bears in my brain that got Gamma Knifed on All Soul’s Day last fall look great. One is almost gone. One is still mostly there but looks like scar tissue so they’re not worried about it.
There is a new bear in my brain that wasn’t there before. Troublesome little fucker. The plan is to watch Fucker Bear for now. Scan in 6 weeks. Go from there: if it’s bigger it gets zapped. If it’s the same, we scan again in 6 more weeks. And so on. And so on. (Tell two friends!)
I write all this about bears and it looks reasonable. Almost as if I’m not really failing my cancer test. Doctors term my condition “stable.” Stable is a big step up from OHMYGODSHE’SDYING. But I can’t get it out of my head that I failed.
Taking it apart, what I think I’ve failed is perceived expectations — mine and of people around me. You guys are great. You want me to heal. You tell me things like the world needs you, Talyaa and I see you completely healed and Go, Talyaa! and it’s great, it really is. The things you say help keep me going some days. I need you to say them. Keep saying them.
I feel you wanting me to heal. I want to please you. It’s stupid, I know, but I want you to feel good. I don’t want to let you down.
My Kahuna, my soulmate, he wants me to heal too. Desperately. I feel his wanting. I honor his wanting. I have never felt so wanted in my life. I want to keep feeling wanted. We’ve made some plans, my Kahuna and I. We plan to love each other for a very long time. We plan to figure out how to have good lives that are fun and connecting and purposeful. We have a place in the world and we mean to be who we came here to be. Maybe it’s not a very big place and that’s okay. It is a very good thing to love and be loved and feel joy and be in communion with others and serve in some way. I want this very much. I feel my Kahuna wanting it. Wanting ME. Of all the hurts in the world I could possibly cause, hurting his heart by failing Cancer is the one that hurts me most to think about.
I had my own expectations. First-tier and second-tier. I already told you that I expected to have this thing licked in six months. Well, six months came and went and here I am with the Three Bears and Bearlet and Fucker Bear. Second-tier expectations? That was the so-called Voice of Reason in my head. Be reasonable, Talyaa. Six months? Maybe you won’t lick it. Maybe you don’t want to. Whatever. But regardless, YOU ARE GOING TO FEEL GOOD. You’ll have energy. You’ll still have cancer but you’ll feel awesome. Count on it.[Voice of Reason is a fucker, too. Don’t listen to him. I weighed 93 pounds this morning. I’m a walking bag of sticks. Everything hurts, even my hair. This is so not awesome.]
I started believing I was a remarkable cancer patient. That against huge odds, I was healing. Magical! Unheard-of! You should be dead now, but look! I really wanted that. Maybe it’s stupid, but I wanted it. I thought that by embracing the Remarkable Cancer Patient persona and story, I could embrace a life purpose. I could give people hope. I wanted that so much.
Perspective: my radiation oncologist said that if I were getting chemo, they’d say the chemo is working. How about if I apply that perspective to my situation? I am doing treatment. A LOT of treatment. I haven’t died yet, and they thought I would have by now. You should see their faces of surprise. I’m stable.
Time to step things up, then. Stable isn’t good enough. I want awesome.