August 8, 2017
Sunday night- recap. I'm going to have to start writing things down more, as my brain is slowly sliding towards the consistency of jello, me thinks it would be green if I had to picture it visually, and possibly John Belushi would be standing by to slurp it down, wearing that crusty gray sweatshirt all the while shifting his eyes left and right to make sure no one is looking. "Hey John, that's my brain you got there"...oops, I'm a bit too late. Starting to think maybe some of Abby's Ativan squirted into my mouth while I was preparing her drug cocktail, which always ends up looking like a cosmo., btw.
We get the weekend off in terms of appointments, and radiation. Other than that, not sure I'd know it was the weekend, except that other people seem to have more time and I hear a lot more lawn mowers. Our prelude to the weekend began last Thursday, when the visiting nurse said Abby's lungs sounded wheezy- she probably used a more technical doctor-like term, but remember your talking to Mr. Jello Head here. But what did stick was that she said we'd end up in the emergency room by day's end if we didn't get a nebulizer pronto. Um, do they have those at CVS my jello brain wondered? No- prescription needed along with a scrip for albuteral. After several hours of wrangling between docs, insurance, and medical supplier, we got our Neb machine delivered, complete with instructions from a nurse who clearly A) had had a very bad day, B) needed to be someplace else quickly, or C) was just getting off her broom. She left to the theme of "Miss. Gulch" (look it up and give it a familiar listen folks) and was on her way.
About an hour later I called CVS ready to send Aliza for the scrip, and they politely said "We're out of stock until after tomorrow, I'm sorry". So I said, Well it's not like it's urgent, or my wife will end up in the ER. No biggie". Ok, I only thought of that in my jello mind...But I did say, "Would they happen to have it either in Marblehead or Salem"? "Oh, would you like me to check for you and I'll call you back?" "Yes, that would be great, thanks". I just love it when someone goes above and beyond the call of duty; sarcasm intended. An hour later Aliza was off to Marblehead to secure the goods and we were nebulizing the night away.
As our medical machinery and supply collection continued to grow, I was increasingly being tortured by the fact that most of the sh*t we'd had delivered was still boxed up and strewn around our bedroom in the same places the delivery people saw fit to dump them. I just physically hadn't had the time or energy to unbox them, organize them, and stow them someplace handy but not obtrusive. Abby's summer goal had been to try and clean up Ben's departed bedroom and make it livable again, hopefully part bedroom when he came home, and part guest room for, you know, guests. Since it did not happen, I was now staring directly into the mouth of carnage and ruin, wondering how to find the time to clean up his room and deal with all the medical supplies.
I have repressed last Friday- want to forget, but kudos to Marlene Conroy for having the time and desire to take my car and hang out with mechanics- needed 2 tires- one had a bubble, one a screw). And me, I just felt screwed.
Come Saturday, Abby had developed a fever (always on the weekend, right you parents out there?) necessitating a call to the doc, and an antibiotic to add to the medical stew. Luckily, he felt it was viral, not bacterial, so was much less serious. Also, Aliza went down for the count with fever as mentioned in my quickie message this morning. Later in the day, another shout to Ken Soltz, one of my oldest and bestest friends since junior high. He came up from Newton to help clean, dust sweep, throw sh*t away, box store, have a beer or two, and get Ben Grant's room somewhat habitable so I could put most of the medical stuff on the shelving system we have in there, and the hell out of our bedroom. Finishing touch was he picked up some take Thai food, and I actually ate a meal at a table with another human being. Love the dogs and cats, but we know why they hang around at dinner time, and they are certainly not being altruistic. That night Abby slept well, which means I have a fighting chance at sleeping well myself. I've noticed my sleep usually consists of starts and stops, with spurts of occasional deep sleep- just not enough. And by my side can be one or two cats, a dog (or two or three), so I'm really not alone- I'd call these are my creature comforts.
I felt recharged Sunday due to some sleep and the accomplishments on Saturday. So I cleaned our room of all the supplies and organized into Ben's room, etc. Abby was pretty uncomfortable most of the day due to her fever, and because of "not-having-a-great-day-syndrome". Maybe they can develop some meds for that- oh wait yes, it's called alcohol.
Sunday night I was up pretty much every 1.5-2 hours during the night, either suctioning, giving meds, changing feeding bags, seeing pink elephants hiding in the corners. Pretty sure they were talking too- they gossip a lot you know.
On Monday, it picked up where Sunday night left off, continuing as a "We are going to wreck your spirit, Craig Grant, kind-of-day". Had a bad headache (migraine sufferer here) but no time to think about it- Abby was wiped and was trying to get her out the door- we have a standing 11:15am radiation date at MGH Danvers everyday- and I usually need an hour to do so, but today was....sloooow. Finally got in the car, and headed out only to find out they are doing major work in Swampy, right in our radiation pathway. Now I know a lot of ways to get out of town, as it's only 3 square miles, but I'd say about 2.95 of those square miles were filled with cars, like when the bumper car ride gets all clogged in the middle and the worker bee is jumping on the bumpers and pushing the cars around trying separate them. To add to the challenging road conditions, I was getting a bit of an aural spectrum in my eyes- due to Mr. Migraine's arrival at my front car door. This was probably only about the fifth or sixth time I'd had these weird visuals, but I'm sure stress played a part. So I'm trying to drive around traffic, aural light circles dancing across my field of vision, and looking at the clock knowing we'd be late to the dance. And all-the-while trying to play it cool, as I'm sure if Abby knew I was driving under the influence of fidget-like spinners in my eyeballs, she'd be rather unhappy. But we arrived safe and sound, got the radiation, and made it back unscathed.
Meanwhile, back at the Grant rehab center, Aliza was still ailing and needed to go to he doctor. Along came another savior friend, Julie Rainer Cummings, wearing her best superhero cape, and took her to the doc for me. Luckily, the mono test came back negative, but she may need a recheck tomorrow- stay tuned.
Tuesday? Yes, today would be Tuesday on most calendars I believe. Long day, these Tuesdays are around these parts. Lab work, radiation then chemo, sprinkled with a nurse meeting, oncologist meeting, dietician meeting, social worker meeting, guy in the really weird shorts and hat meeting. Left home at 10:30; it's after 4pm- hope to be done w/chemo by 5. Now you know why I've been so prolific in my posting- Time, with a capital "T". It's that elusive element in our lives. Seems like we either never have enough of it, or we have too much of it on our hands. I'm trying to be better about appreciating time with a capital "T". I've thought about meditating on and off for years- have tried on my own a bit with a lille success, but my own fault for not sticking with it. I know it would help me, and that was before my world got shaken and stirred. And I believe in mindfulness, and really liked John Kabat-Zinn's book "Wherever You Go, There You Are". Read it twice. I used to think that it came from the movie Buckaroo Bonzai, which had its own weird wisdom regardless. So maybe I will read it a third time (the charm?) and try try again. Chemo's almost done; time to pack up the pack mule (me) with Abby's bag, my backpack, the portable suction machine I now take with us, her clipboard and notebook (remember, can't speak), and anything else not nailed down- I figured we're paying for it all anyway.
That's all folks, I've bored you long enough, now go get a life; go grab your life, maybe a family member's or friend's too, and spend some time together. No fighting now children, play nice, get along and be happy. Talk soon- probably end of week, but you've got time.
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