Sunday, June 9, 2013


I forgot my hair appointment today, which is out of character. A bit of stress on the brain, anticipating the upcoming Cancer Center appointments. Not nearly as dramatic as the time I left the keys in the Cadillac, with the engine running and the car unlocked ALL DAY at work. I'm sort of famous at work for this, at least with the medical center security staff. I was once again reminded that I have an angel the day that happened. It wasn't even cancer that evoked that response. It was my health insurance company. Waiting for approval on Melanoma Man's Zemaira which treats his Alpha 1 Anti-Trypsin deficiency. We waited about 9 weeks and then no one could tell us what it would cost us out of pocket. We found out the hard way when a bill for $10,000 came in the mail 6 months after he started treatment. It's a steal compared to the full retail cost, which is about $96,000/year.  Saturdays are usually crazy for me under the surface, trying to inconspicuously wash all the sheets and clothes, sweep, mop, clean bathrooms etc when melanoma man isn't looking. Last night cleaning kitchen counters Melanoma Man walks in with THAT face on. It's a face that makes me want to smack him, but I never do.  "I feel so unworthy," he says and then I feel a little guilty for my thought crime.

"Too late for that. I already love you, you can't give it back. Just accept it." I said

"Look at this," he shows me his swollen elbow. It has a pouch of fluid that feels like a water balloon just under the skin. "What is it?" He says.

"A ruptured bursae I suspect. Does it hurt?"

"It's been hurting for 4 days, but mostly it's scary, not knowing what it is. My shoulders hurt too. I can barely lift my arm."

"Yup, that's probably bursitis too, just not ruptured."

"And I ache all over. My book is in the car, but I was too tired to get it."

It must be terrible to be betrayed by your body. He apologizes for what he perceives as complaining. I don't see it that way. "You are not supposed to carry all the burdens by yourself," I say. I don't say, but I do think " you act like such an asshole when you are pretending to be fine." 

Next week 2 days in Tampa for CT scans, MRI, labs, EKG, physical exam and results. More results. I took the two days off from work so I could stay home with the kids. My plans foiled again. "I'm taking the boys with me. You don't need to take off from work," he said.

"I am coming on this trip," I said. Too bad so sad. He is such a control freak. He changes the plan again, so I change my work schedule again. I'm not going to have it, him taking the kids by himself with a very high likelihood that the tumors will have grown.

Today we have the afternoon, evening, and night to ourselves. Friends A & K have invited the boys for an overnight. They are practicing their grand parenting skills or so they say. I think they are really just practicing extreme kindness and thoughtfulness. They have 5 grown boys between them. It's been years since we went on a date or had any time to ourselves. It was possible to do every week when we lived overseas and our dollars went a long way. Here in the USA it's more of an investment.  He is so in love with the boys that I have often felt like an outsider. 

Back when he was managing energy projects in developing countries he managed a lot of people. When he counseled staff about work performance he always started with a compliment before proceeding into what was supposed to be constructive criticism. Unfortunately he has applied this technique at home as well. Every "I love you," followed with "but..." So much so that I would do almost anything to avoid hearing the first half of the sentence because I knew what was coming. I get on his nerves and he gets on mine. That's where my fantasy of having my own cottage in the backyard came from. I just don't particularly see the point of telling him what his flaws are,  so I have never done it. Most of us already know our own flaws by heart. Whenever I might tell him I love him he would ask why. "Because, that's why, so there, love is a verb, now I have to provide supporting evidence? Are you kidding me?" The evidence is that I see the flaws, all of them. And I'm still here. I'm still here.

So with no kids to manage we had a picnic of carry out from Moe's and watched The Help in our living room. I sat still for the whole movie. If you know me you know that this is a miracle, this sitting still. My To Do list is almost always running in the background. Tonight for the first time since before we married he said " I love you," without the "but." It was worth sitting still for.


  1. I am always praying for you and your family. I wait for these in my inbox. You have the unique ability to make me choke up with tears and laugh at the same time.