Wednesday, November 6, 2013

Gotham City

Last night I walked past the little {not so little anymore} guy's room and he peeped "mim" which is what he does when he wants me, but knows he's supposed to be staying put, the day officially over. So he peeps "mim" instead of outright calling "mom", and he does it extra cute, so that somehow, it doesn't count and well, he's got my number, I can resist, especially when he gently patted a spot on the bed and said "have a seat, let's have a little chat". He was lamenting that he was having trouble sleeping lately, waking in the middle of the night and knowing he should stay in his room, but winding up in mine. He wanted to stay in his room and didn't know why he couldn't manage to, he was frustrated. After telling him not to worry about it and all that, I shared that I felt all confuddled too, I don't usually share my worries but I'm starting to because I don't want them to be blindsided. Confuddled is one of our words, a hybrid of confused and befuddled, every family should have their own words, I believe. This I believe. I told him I just didn't know how to do all the things in a day that I was supposed to do and I felt badly that every afternoon I was falling asleep on the couch when he came home and then making dinner late and everyone being hungry and gabbity gab, and he said "you're like a rubix cube, but one of the colors is on the wrong side." I agreed, but said it wasn't just one square, the whole thing was jumbled up. And then I stroked his forehead and his hair while he closed his eyes. Whenever I stopped for a second, thinking I was going to leave, he made a frowny face, so I kept going. I was plotting how to escape and then I wondered why would I want to? I'm sitting here in the dark, looking at this angel face, feeling his warm, soft skin and making him feel loved and safe, why would I want to do anything else, and what could possibly be more important.

I went to the lymphedema clinic today at the hospital because of my swollen hand and arm. I thought the goddess Jessica would do her usual massage thing, loosening up my lymph nodes, moving them around, and give me a pep talk about not needing to worry about it. Instead she was kind of alarmed. She measured all up and down both arms and compared them to six months ago and my right arm is 3 cm larger. She wants to wrap my whole arm and hand in tight bandages for 6 to 8 weeks. Say what? 6-8 weeks? And have me come in 3 times a weeks, aghhhh. I asked if I could just wear the compression sleeve like on the plane, but she says that only prevents lymphodema, doesn't help improve it. Not happy, not happy at all, I'll admit to squelching the tears in my eyes, because I don't want to get sucked back into the system, and I'm already freaking out about how to earn money and I'm already without my feet, without my hands, the paradox deepens. I told her I just couldn't leave wrapped up, I had to finish some projects this week and I'd go buy a compression glove tomorrow which I guess, with the sleeve is better than nothing and I'd come back next week. Just, ugh! Jessica told me to not go home and start googling lymphedema, I laughed, and said "I'm going home to google it right now." Jessica doesn't know me very well. I didn't go home, I went into work for a bit, then I picked up J at his dad's because he needed to print something here and now I'm writing this, but at some point... I'll definitely be googling.

In between now and then, I ran into someone I hardly know, but who, well, due to logistics, I run into a lot and who always wants to talk about her close relative with stage IV cancer. Today she shared that the chemo was no longer working and there was nothing else they could do and I told her I was really, really sorry about this, and I was also sorry that I just wasn't the one she could talk with about it, because, I'm just not.

It's unusual for me to speak up like that, and normally I'd have felt terrible, just terrible, filled with guilt for letting someone down, but today I just felt like, you know... I have limits too and I am full up right now. I just don't want to hear about anyone else dying of cancer, just don't. I want a Make a Wish Foundation for adults and I want to go to the Galapagos Islands and see lots of critters. On Nov. 15, San Francisco is going to become Gotham City for a 5-year-old with cancer who wants to be Batman. It's going to be huge, flash mobs, the Police Captain, faux bad guys to capture, City Hall ceremony with a key to the city. Amazing.

This country spends 707 billion dollars per year on defense, $51 billion on weapons alone. $51 billion spent on ways to kill people and only $4.9 billion on curing cancer. We spend 10 times more of our tax dollars on ways to kill people over ways to save their lives. If I were talking about the whole military budget it would be well over 100 times more. We spend less per year now on cancer research than we did a few years ago. We spend $47 billion a  year on homeland security and a hell of a lot more people have died of cancer than by terrorists. And I won't even start on how little we actually spend on the food stamps everyone keeps bitching about, but it's not much, barely a needle in the haystack. You know, those food stamps I'm gonna wind up on despite having supported someone on their road to affluence for decades, thinking it was our road. Heck of a thing to realize that it was never your road at all, you weren't even on the map.

I'm turning my own stomach with all this whining. Today started off really well, brand new day, I chatted with familiar high school students at the café across from their school because I was dropping off son and there was parking so I went in for tea. Shortly after, I stood in a parking lot with my face in the sun, soaking up some vitamin D, having a moment, but then I got off track again. Two lousy days in a row, I resent that universe, I do.


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    1. Sounds like "I" should keep my sleeve on.....can't things ever just go smoothly!!!

    2. who do you go to? i was going for a while and then she said i was done and should self massage for 45 mins. a day at home. really... who's gonna do that. it's very rare to have a problem with only one node loss, but leave it to me. i don't think you need to leave your sleeve on...