Copied email update about my day
We just finished doing my switched from Wednesday to Saturday chemotherapy…. I was typing out an email to some dear friends who buoy me up emotionally through days like this, and meanwhile I was feeling guilty that all this typing ( one finger on the iPad… Not efficient. ). Wasn’t blog typing instead… I have so much to blog about, so many pictures… But when everything doesn’t line up right with my time, my drugs, the computer that I can put pictures on, etc…. Excuses excuses… So I decided to just copy and paste this email onto my blog so that if anybody is SOOOOO BORED that they want to read over a thousand words of whining, at least it’s up there, typos and complaining and all.
This morning, Emily had to go to the train station at 630 to be in raleigh by noon for governors school auditions. ( imagine here a photo of emily walking away from the van, bookbag and viola on her back…. ) Brian and Danny had violin adjudications downtown, (in Charlotte, not Raleigh. Thank God ) and I felt like the world’s lamest mother since, for example, at least fourteen out of fifteen of the littlest Asian girls were in pink dresses with very full skirts, perfect white tights, shoes and immaculate cardigans buttoned at the top. Danny’s two best friends were in perfectly pressed Oxford cloth shirts, khaki pants with no holes or grass stains, their shirts were tucked in and their belts were obviously their own, not borrowed from a brother one size bigger or smaller. I hadn’t read that part of the instructions… Brian wore plaid shorts and an old soccer jersey.
(imagine here a lovely photo of Brian’s big violin right next to danny’s tiny one….)
I left George with Sam. Mistake. Details in a second.
When we were in the warmup room, Danny buried his face in my lap and started to cry. He said he didn’t want to play for the judge because even when he plays the right notes perfectly, his music doesn’t ever sound nice (his way of explaining that due to his cerebral palsy he has a tough time with good tone production…). But the way he said it even made me cry. We got his teacher to come help and she ended up sniffling, too. Danny just usually doesn’t have this sort of troubles… To make a long story short, he got through it… It was a growth experience in a very supportive setting, which is the whole point… But oh my heart was breaking for him as he gets more insights into his disabilities. Brian did great and scored at the highest level. Even though he played a totally randomly wrong last note…. I mean with a bazillion notes in that piece, all played from memory, of course, how can you forget the very last one? Very strange
We got home, Dixon, who had worked all night was in the kitchen with George. Sam had accidentally fallen asleep on the job so George thought he might wake daddy by clobbering him in the head with a big CD player. (no, I did not take a picture of the goose egg on dixon’s temple)
Emily called from the audition. Her solo went perfectly, but the sight-reading…. Uh…. One kid’s quote was “well, there were notes on the page. I played some notes, maybe some might have been on the page somewhere. Then I stopped.”. She was reassured that all the kids felt the same way.
Then Brian had a soccer game, that Dixon, despite working all night and being up wnith George earlier really wanted to go to. No arguments allowed. So they went, and they lost four to zero. Brian scored the other team’s fourth goal. (no photos of very sad soccer player. That’s sort of unfair)
Meanwhile, I took a nap with George and missed a skype call with sweet Katie and her mitten knitting! At least she got to chat with Danny… They are the same age.
We muddled through the rest of the day and evening until just before I was supposed to pick Emily up at the train station, Brian got a migraine and his medicine was still at walgreens. George was having a tantrum and refused to stay with Sam.
Back to making a long story short, we got the drugs, got the migraine fixed, Brian is asleep. We got danny’s dressings changed, his tapes fixed, his tubie juice hung up and everything attached for nighttime. George is asleep. Sam is asleep. But I ABSOLUTELY have to have one of my chemo drugs tonight. And we have the wrong kind of needles. I noticed this AFTER taking my oral premeds, so I couldn’t drive to go get the right ones.
I managed to talk Emily into doing my treatment with unfamiliar incorrect administration supplies. She was not happy, but got over it, and spent the next half hour snuggling her sweet smelling freshly showered damp head into my shoulder and chatting about her audition and her learning today that as a legally visually impaired kid, she is eligible for 100% tuition assistance at any state college, even through grad school.
So now I have had my chemotherapy, at least 80% of my children are asleep, so I need 420 more ml of fluids and I can go to sleep too.
I think I might cut and paste this note to you guys right into my blog… I have been so bad at updating everybody….
Cancer sucks. And when they add the cytoxan, it’s going to be worse.
A friend will bring me communion in the morning. Could actually use some of that extra grace right now.
So here’s the conclusion:
I CAN’T FIGHT CANCER AND ADRENAL INSUFFICIENCY AND EROSIVE ARTHRITIS AND EVERYTHING AND DO MY JOB AS A MOTHER TOO. ITS JUST TOO HARD AND I AM MAKING A BIG MESS OF THE WHOLE THING.
now that I have that off my chest, and now that my vision is going all wonky again (side effect from one of the antiemetic drugs) I’m going to close my eyes and listen to my sung rosary. Maybe tomorrow will be less out of control…