“You go in. Magic beams come out.”
So sorry I haven’t blogged.
That’s not cool of me. I know some of you look forward to what I write on a semi-daily basis, but between the beach and new medical situations and school going back and that whole mess, I just think I needed some time off from writing.
And I know that lots of you try and read between the lines of what I write to suss out how I’m actually doing, I know this because some of you email me telling me you're doing that. It makes me laugh. And feel incredibly loved. It’s so much easier the longer this thing goes to obsessively look for the bright side. To not burden people with the challenges. To get a therapist and put all of ones energy there. But that’s not why I started this blog years ago. I wanted to make sense of what was happening to me, and in turn, maybe have that make sense for others. I’m not sure I’ve been doing that recently.
I got an email from one of my mom’s cousins last night asking me where she can find my blog. She’s starting chemo today. I gave her the link and told her I was praying for her. That made me think it was time to get honest again. To open back up as to what cancer treatment is not just the first year when everything is new, but three and a half years in, when doctors are really trying to figure out how to stop it. When we’re maxing out science and using more of our brains. When options change.
Because it hasn’t been what I thought. Turns out—radiation has become a huge part of my story. Almost as big as chemotherapy. I think I write about it less because it’s shorter and seems slightly less ominous.
And they keep giving it to me because I respond to it well. Like the pain I was in a month ago is basically gone. Yes I’m on some medicine, but the radiation zapped that out. How is that nothing less than a miracle. Within a week the receptionists at the cancer center were like, “Holy moly, look at you!” All of them. To a person. That didn’t happen 50, 60, 70 years ago. Radiation was giving people cancer. Now after ten treatments I walk out pain free.
Now we’re seeing if radiation will fix this spot in my lung that is causing the worst shortness of breath I’ve ever had in my life. This shortness of breath is exacerbated by the fact that I live on the third floor. Every time I leave my house I have to come up three flights of 42 stairs. Not that I’m counting, oh wait, I am. Yesterday I had to go up them twice and the second time took me two hours to recover. And by two hours, it really took me all night. I wheezed as I made the laziest excuse for burritos ever perpetrated by a gringo. It might have been a hate crime. Obviously the third floor can’t continue, even if the radiation is as successful as it has been in the past. So Jaimie and I are moving. So in addition to all the other things going on, we’re in the middle of trying to buy a house.
Because, why not?
That’s one of the really frustrating thing about cancer—it doesn’t give a shit about life’s details. In fact, it gives you more of them. It anoints you with them. It lays them at your feet. It’s almost as if it’s throwing down a gauntlet—like what are you going to do about this? Because it’s either stay on top of all this mail and all these phone calls and all these appointments or you risk financial ruin and possibly death. This is not me being dramatic. Radiation doesn’t care that syllabi need to be written. Shortness of breath doesn’t care that classes need to be prepped. Or payment plans need to be set up and adhered to. I deferred my taxes this year. I don’t get another extension because I had to spend time and energy researching the three treatment plans my doctors have suggested to Jaimie and I.
And then things happen. Like someone tried to steal my credit card so I had to re-do all my automatic payments and whatever and what not. That’s not the end of the world obviously, but it can feel like one of the many straws falling on the proverbial camel's back.
This doesn’t even take into account the fact I’m still arguing with insurance companies, that I still don’t have prescription medication insurance because Medicare and Social Social Security screwed up so epically.
And this isn’t me looking for sympathy. Please. I don't need it or want it. I could look at it like a badge of honor. The longer I fight this thing, the more life seeps backs in, and staying alive requires details and paperwork.
The funniest and most frustrating thing about this summer’s step into the breech is the one part of the body that they treated and completely got all the cancer out, this part of my eye called Meckel’s Cave, the area behind the eye, that is the part of my body that’s hurting the most! I’ve got the phantom pain! Like when someone has their leg cut off and it still hurts. Except this is from nerves in my eye that make it difficult to chew and feel like someone someone is stepping on my face all day. This is such a lesson. A lesson in what it means to fight this thing. To really go after it in order to live a life with family and loved ones. Sometimes you’re going to do something and it’s going to hurt and not feel better. And the pain will in fact be a sign of success. A sign that I need to carry into the world. To let people know that if I can handle it, me, in all my weakness, then you can handle it too.
That’s the most effective treatment there is. The knowledge of the ones who have come before. I’ve been blessed this week to be reminded of my community of survivors and how it’s growing every minute. I got an email from one of my mom’s cousins last night. She is starting chemotherapy today and wanted to start reading my blog before she started. What a gift she gave me. Hopefully my small words will give her some sort of comfort.
I saw another dear friend just celebrated a year from her last treatment. There was a video on Facebook of her beautiful face getting strapped into a mask that would make it impossible to move her head and neck. I know those masks well. I’ve used them twice and have got to go in on Monday for a 35 minute session in another one. She reminded me that some days we’ve just got to live. “We gotta keep smiling and being grateful,” she said. Truer words were never spoken.
And then I got the most wonderful message of all. It was out of the blue. A person I’ve met along the way asked if Jaimie and I wanted a quick vacation to their mountain house in Flat Rock, NC last weekend. We would have taken it, but we were already at the beach in another friend’s house for the week. She asked me how I was, and I told her I was nervous because I was doing another round of radiation. She said that she was a big fan of radiation. That you go in
and magic beams come out. Her husband died about six months ago. The kindest man one could ever meet, and I only knew him for about forty-five minutes.
What would that woman have given to have her husband be going in for radiation treatment in a couple of days. What would she give to have him be alive on the couch at the beach. Some days we’ve just got to live. Somedays we’ve just got to deal with the bills and the details. Because that means we’re still here. And while we breathe, we hope. And we can be with the ones we love. Even if it does require a little extra paper work.