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.

Tuesday, November 5, 2013

Scruffy the Cat

Someone I didn't know all that well, but whose music I loved... someone I hadn't seen in thirty years but can still see vividly in my mind, someone who was my age and had much to live for and many who loved him, died today of cancer.

The person that broke the news, has had cancer, the person through whom I knew the songwriter and musician, has had cancer. What the fuck is with all this cancer? We're not in our 70s and 80s, we're in our 40s and 50s, is this normal? Was it always this way, or is this a glimpse of the future where some are living longer, but so many of us aren't.

This hasn't been a good week for me and cancer. I'm trying desperately to get back to work, my savings are dwindled, I don't want to uproot my family, I can't even imagine the process of that, so I need more income and I need to stay put but stinky cancer after-effects keep getting in the way. My tumor, and hence lymph node dissection and radiation were on my right side and I'm right handed. I made a display two weeks ago and drilled about 70 holes into wood and then screwed in cup hooks with my thumb and first two fingers, it hurt, I got a blister, that's fine, but two weeks later my fingers are still numb. My hand is swollen and my arm just feels kinda dead. I work with my hands... this is a problem. That shoulder hurts, I bet you didn't realize that you pull your dominant arm backwards to put on a coat. I didn't realize it until it hurt like hell to do it, and now I'm trying to learn how to put on a coat like a lefty, which is harder than it sounds.

I missed a Friday Night game on a beautiful night last week because I'd hit the wall of exhaustion and my neuropathy feet were screaming and my hand was throbbing. Missing things I want to do makes me mad. Before I got sick, I was pondering the paradox I find myself in. I'm supposed to be self supporting or working towards being self supporting while also being a full time, single parent with miniscule assistance from other parent. It was untenable then and now it's even less tenable and I'm just not sure how I'm supposed to be solving this conundrum. What is the secret code that deposits more hours and energy into every day and makes my hand work, my body work, and keeps me healthy instead of burnt out and eating badly because it's quick and easy? I don't like not being able to figure something out no matter how long I obsess over it, I don't like defeat, but I just can't figure out this equation, it does not compute.

I'm complaining, what a waste, someone died today, it wasn't me, someone faced what I'm scared to face cause they had no damned choice, and maybe someday I'll have no choice, so I hate wasting time, but I just can not seem to figure out how to make my circumstances fit into a box that works.

Someone died today. Hearts are broken today. And it's just another day like any other, people die every day, and they're gonna keep doing it. Every day.