The tune by Carole King swims around in my head. “You’ve Got a Friend”
Not just friends–family too. Our middle son, Matt, and our eldest, Cameron, both come to be with us at the farmhouse. I don’t know what I would do without them. My woman friends, Margarita and Carol, come to help too, bringing food and helping me get things organized in our new digs. Rob called from Crested Butte, CO everyday to talk to Greg and me. He and Stacee have a home near us in Baja. They are such good people. Those phone calls meant so much to us.
Mike and Janine visit as well, taking our minds off our troubles. Our longtime buddy, Harold, with whom Greg worked for 25 years, comes to stay with us at one point. He lives in Spokane, and it is a boon for us to have him here. Michael, another of Greg’s co-workers and friend of 25 years, stops by to visit too, and he brings our mail.
Many people send cards of love and support. One of the messages from a card Rachel and Mark send stays with me. It is sweet mail, “Keep Swimming. Refuse to Sink.” My friend, Holly, a professional photographer, gifts us with a framed photo of our beach in Baja. I cry happy tears.
But the insurance company mail is not so sweet.
Later I painted the saying so I could remind myself. “Refuse to Sink!”
We’re experiencing a big problem with our medical insurance and we keep going around and around on the phone and through the mail. If dealing with cancer and treatment isn’t enough I’m getting notices from the Premera insurance company that they no longer will cover Greg. We have to start all over with another health insurance company. Really?? Just perfect.
It’s hard to accept that I can’t do this alone, but as soon as I let go of my ego surrounding this, I am more than happy to lean on all these angels surrounding us. Family and friends! It’s all about love. Right now we’re getting a lot of that.
We are showered with love and help and emotional support. Tons of it. People keep reminding me to take care of myself, not just care for my sweet husband who is suffering so. I am not watching out for myself much during this time. I have a mission and I am not thinking about anything else.
For Greg and I it’s as if there is a veil over our lives. You know how you feel when you’ve got a bad cold or the flu? How nothing is right with you? You don’t think the same, feel or react to things normally. Multiply that by a thousand. It’s as if I have no peripheral vision. My brain is scrambled.
Most times I am one heck of a good multi-tasker. You want five things done at a time and done well? I’m your woman. Not now. I’m working hard to focus on my “nursing” duties. I’m cleaning his port, using his port for medication and for hydration. We have a backpack to put the bags of saline in, with the pump secured in the pack. It has a timer on it. Greg can be more mobile with the pack. However, the nutrition bags are hanging on the pole that has its own pump attached to it. It’s on wheels. That’s not as helpful as it might sound though, as he can barely walk and he asks me to disconnect him from the food instead.
Then he won’t let me start it up again, as it’s making him sick. I’m beside myself with concern for his nutritional needs. But he refuses more often than not. His weight is falling rapidly. With it goes his strength. I’m helpless to help him because he won’t let me. This is consuming me with frustration, anger, and fear. I’m angry with his treatment. I’m angry with cancer. Fuck cancer.
I explain to him that I’m the one whose responsibility it is to see that he gets his nutrients and his fluids. He says he doesn’t want to vomit anymore. What am I supposed to do? He’s malnourished. It’s killing me. It’s killing him. I think my blood pressure must be high. I know his blood pressure is high. Pain does that.
I want to scream. I go downstairs to the bathroom and close (slam) the door. I scream and cry for all I’m worth. Now I have a splitting headache from all this screaming and crying. Go figure.
I have to keep his hydration packs in the refrigerator, but the cases of items needed to deliver it and the cases of Boost for the stomach tube and all those disposable bags to hang on the pole litter the dining room.
Just a few of the things I have to use for hydration and feeding.
I am recording things in my notebook to make sure I have something to which I can refer if I can’t remember my care accomplishments. Which medication? When? How much? How much nutrition has he had? When does the next shipment of hydration packs come? Did I order them? The pharmacy is good about calling when they believe I’m running low on supplies. Where are those syringes? (I have many different ones. Some come already filled. Others I must draw medication into the syringe.) Sanitary practices must be followed. I’m paying a great deal of attention to all of this. I can’t let my emotions join my nursing party. Focus. Focus.
No longer doing any exercise, he lies in the chair trying to sleep, in between trips to the bathroom.
Without my family and friends and the neighbors who are splitting wood and keeping the stove burning, feeding the chickens, and letting them out when I am gone, I’d be unable to function. We had never even met this neighbor before. The care they give us is such a gift. All the people who help, give hugs, their ears that listen. Priceless.
I tell Greg not to try to get up without me or someone to help, but he’s not “with it” enough to remember, or the urgency to get to the bathroom is too much. He’s fallen twice now. His fever is getting too high. I am crazy with fear and worry. I call the nurse and she tells me to take him to emergency.
At this point our sons have gone home to California and Florida with promises to return again soon. So Harold helps me get him in the car and offers to take care of Isabela, so I don’t have to have her stuck in the car for hours. Bless him. (He’s not a dog lover either).
I drive to the ferry and head for the hospital. Good thing I remember to bring a big pan in case he needs it. Which he does. I force myself to concentrate on driving carefully. I’ve got precious cargo to deliver to the hospital.
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