Sunday, March 17, 2013

Little House on the Prairie

I read the whole series of books to my oldest son, I, when he was about nine years old. I thought the pace might be too slow or boring, but it wasn't. He was fascinated to hear how kids lived in another era. Some days I wish I could go back in time..

We celebrate this week, tentatively. Word is the tumors are still shrinking. Melanoma Man calls from the road on Wednesday, "I've got PVCs, but it could be nothing. I'm supposed to get a rhythm strip done when I get back home." He tries to joke with me about PVCs being polyvinyl chloride, rather than premature ventricular contractions. But I'm not biting. He's in a toxicity study, pre-clinical trial to see if XL888 should even go to clinical trials.

I know the PVCs are not anxiety or "nothing" as he would have me think because they do an EKG at every visit and this is the first time the PVCs have appeared.

Thursday morning I hear him on the phone with the call center of the university medical center for which I work. He's leaving a message for his primary care doc. He tells the person on the other end: "I had a routine EKG at my other doctor's office yesterday. I'm having PVCs. I need to get a routine rhythm strip done. Is that something Dr. A can do?"

Off the phone I tell him that he needs NOT use words like ROUTINE when he's talking about an appointment with his ONCOLOGIST, an investigational drug, and an abnormal EKG. "Look the call center folks answer the phone, schedule appointments, that's it. They can't triage. So they are going on clues you give them and if you keep using the word ROUTINE, no one is going to call you back!"

Sure enough, no call back Thursday, no call back Friday. I could call on his behalf but I don't. It's not worth the fight. That would just be me, stealing something else from him. First the laundry, now this. I can't even ask him if anyone called back. It makes me too mad. I getting weary of saving his life.

Friday night the youngest, W, is in a full bratty "I don't like the dinner" meltdown, clearly not reading the signs I put up in the kitchen that say "YOU get what you get and Don't throw a fit." He is throwing it, the fit, that is. The words in my head, which would be like gasoline on this fire, are getting dangerously close to flying out of my mouth, so I put on my shoes and head for the car, drive to a nearby playground parking lot and call a friend. I tell her all the horrible words that I want to say to youngest son.

I remember my mother running away when I was a child. Always drunk, spewing her vitriolic words at us on her way out the door, often a special event like Mother's Day, sometimes in a fur coat. Hmm, maybe I am an ok Mom after all? The bar is set kind of low.

Back home later W tries to make it up to me with a cursory "I'm sorry." I'm not sure where it came from when I said "It hurts my heart when you act like that while your Dad struggles to breathe and make dinner at the same time. He's not going to tell you how hard it is for him or how sick he feels from his diseases and his medication," The tears came streaming down, W's and mine.

Sunday morning Melanoma Man says "Do you know Dr. A.'s fax number?" That's how I officially find out he never heard back after leaving his "routine" message with the call center. His oncologist wants him to drive 4.5 hours to the cancer center Monday if he isn't able to get the rhythm strip done locally at Dr. A's office. I'm annoyed because I was right about the call center. I call in a favor from my Department Chair. Ten minutes later Melanoma Man's phone rings. It's Dr. A. He will see him Monday at 11. No 4.5 hour drive! Here I am again, saving his life.

These are the days when I wish we were out working the fields and one day he just got tired and sat in the rocker. And the neighbors noticed that he wasn't working the field with me anymore. They came and helped me with the harvest. And we weren't all so monitored and measured and aware every moment of what we are losing.

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