Monday, March 28, 2016

Days blur together

It is Easter Monday. No school for the kiddos. Ordinarily I would be at work today. MM's home care nurse case manager will come today and a speech therapist this afternoon. MM and I were up at 5:45. He started having a few sips of coffee by mouth in the morning without choking. It is the rituals we miss. Rituals of preparing food for each other. All the driving gone, no more picking up kids in the van with snacks ready.

I worked on Tuesday. It was good to see everyone, to have a routine to follow. Uncool Wayne arrived around 4. I got home at 6:10. Wayne had taken boys to karate. 

Melanoma Man and I left just after 7 on Wednesday, after Butter had gotten on the bus, leaving uncool Wayne in charge of getting iMac to school. We stopped at a rest stop on I-75, so Melanoma Man could administer a tube feeding(lunch) just about 25 miles from Moffitt. Radiation was running a little late, but we weren't. I had a bag of magazines dropped off by Leila, to while away the time. MM said he felt weird afterwards. We picked up mashed potatos for him and salad for me to eat back at the hotel. During dinner(evening tube feeding), his hands started to shake. His whole upper body now shivering. Feverish, he asked for a blanket, breathing got faster. I had not brought a thermometer. It was a restless night for both of us, wondering if he would end up in an emergency room or hold his own. Morning brought exhaustion, but no more fever and chills. Thursday he slept most of the day, while I read or watched him nap. Friday we returned home, pretty depleted. A weekend at home was nice. Monday came fast and we were back in the car again, this time accompanied by a book on CD to fill the silent space between us on our way back to the cancer center. I brought the oxygen concentrator this time. It is a cumbersome unit that magically converts room air into oxygen which can then be delivered by nasal cannula to Melanoma Man. He uses it at night when we are home. We haven't traveled with it before. Melanoma Man objected. I told him it was to help me get a good night's sleep. Yesterday was his "last" day of radiation. The radiation tech asked him if he would like to ring the bell, a waiting room tradition for patients on their last day of radiation, a graduation of sorts. He said no, explaining to the tech that this is a journey, not a destination.

We were home by 2:15 pm. Melanoma Man hopped into bed for a nap. When the end of day finally came I sat on my side of the bed, feeling as if it was the first moment of rest in a month. I go to work today, which will be great and wonderful and scary. Scary to leave Melanoma Man unattended even though I believe he is ready for it. The weight of his well being is always with me. It is harder to carry when I am not with him.

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