TLC Sleep-Over Party, Wuthering Heights, More Chemo Delays, Music

Sunday I felt wistful and tired driving back to Rochester. I gratefully got Nadine back to her orchestra rehearsal on time. Nadine wanted Taco Bell big-time -- we didn't have much time, and I agreed. It was definitely a Taco Bell kind of evening -- 7-layer burritos, here we came. I'd forgotten how much I liked them too.

TEENS LIVING WITH CANCER SLEEP-OVER PARTY
This was at the home of Lauren, founding mother of TLC. About 6 girls went, all looking quite happy as they walked in the door, a flurry of parents and kids arriving and much glee. Lauren invited me in for a little bit; I left, found out Nadine had forgotten her toothbrush, got her one, came back in. It all looked pretty normal, including the forgotten toothbrush. I drove the toothbrush back to Nadine, visited Lauren a bit, and drove home.

I'd wanted a night to do my own stuff, but when I got home I was so tired that I put away the food and went straight up to bed.

Cancer or none, the next morning the 6-or-so girls were an almost-caricature-ish picture of The All-American Teen Girl Sleep-Over -- stumbling blearily and happily around Lauren's kitchen in their jammies, sitting at the table for a breakfast of egg-or-quiche, bacon, bagels, and blueerry-muffin cake. Two or three bald-headed girls, including Nadine, sported henna "tattoo" pictures of eyes on the back of their heads (other girls had beautiful if messy hair). They'd made pizzas, perhaps done other craft stuff, etc. -- much fun. One girl had just won a community service award for working on a book club session introducing teens to two novels whose protagonists were teens with cancer. She's a very exuberant 15-year-old who is into theater, and whom Nadine likes a lot.

At least I'd been smart enough not to schedule any organized activity on Monday. Nadine was pretty tired when we got home, and curled up on the couch. I went up to bed. Nadine did a decent amount of practicing, and I got the kitchen cleaned up and hygienic. The sweet potato pie came out late for dinner, but it was on time for her "second dinner". A bath at night, perhaps for us both (separately) and an all-in-all pleasant evening.

WUTHERING HEIGHTS

Nadine is reading Wuthering Heights. She picked it up from my bookshelf when we were in Hinsdale over the week-end, and didn't put it down. She's finding it really interesting. This interests me because Wuthering Heights is classified as a "Great Book", the kind of classic many people wouldn't go near unless they were assigned it in an English literature class. Karen Sciortino, the admissions couselor at Mc Gill, had asked Erek to make two lists of books he'd read, one for "schooling" and one for pleasure. She said she'd be suspicious if he put Wuthering Heights on his "pleasure" list. But it would be on Nadine's pleasure list. It is an excellent book.

WHY AM I SO TIRED? WHY IS IT SO HARD TO REST?

I don't know why I have so much trouble resting. Is it worry? Is my body trying to fend off something? It sometimes happens when I see no reason, and has been persistent and awful. I had thoroughly enjoyed the week-end; now, after the night of restlessness I felt sick again -- or maybe it was exhaustion, yucky and tedious. I gratefully got Nadine back to her orchestra rehearsal on time, and I went back to the house and unpacked,did chores, and got Nadine. It was pouring and we rushed out into it.

NEW SUBSTITUTE NURSE, AND MORE CHEMO DELAY

I was still tired Tuesday January 19th, and wanted to clean before the substitute nurse, Leslie, would come. There was still a load of dishes in the sink. Just about every week, on Jessie's day to see Nadine, I think this time I'll clean up the house and "show" Jessie that I'm really, truly, not a slob, and every week she ends up walking into a messy place. It's been really cleaned up just once, and Jessie's obviously noticing the improvement made my self-consciousness about the later-on mess even worse.

The new nurse was very knowledgeable too, and very nice, although not as much a "specialist" in pediatric oncology as Jessie. Nadine's blood pressure was fine, although she looked somewhat pale.

I'LL BE GETTING READY TO LEARN TO DE-ACCESS NADINE'S PORT, WILL BE GIVING METHATREXATE TOO.

This is for Nadine's "Maintenance" phase of chemo, to last for about a year and half, starting probably in March. To my surprise, Leslie indicated that she thought I should learn to "access" Nadine's port, a surprise.

I knew I was going to be learning to DE-access Nadine's port for the next phase of chemo (maintenance) that will be coming up fairly soon, probably in March. Then she'll be going to clinic every three weeks (or when blood counts are up) for regular appointments. Jessie will usually come in to "access" her and draw blood; if all looks well, I'll give Nadine methatrexate and then de-access the port. It scares me now, but if I learned to give Nadine her daily heparin injections, and to do the complicated wound cleansing I did for for months, this should be just fine too.

Leslie encourage Nadine to try one of the flushes associated with de-accessing, and Nadine pushed the stuff into her own port. Leslie isn't as much into steerile gloves for me to use (although she uses them as she's from outside). I want to use them anyway.

CHEMO DELAYED AGAIN

I got a call from Margaret at the lab -- her APC had gone DOWN, not up -- from 700 to 600. Ick and distress. I figured it would be another week -- this would meant that she'd be about 2 weeks post-chemo for Dance Flurry, which was not what I hoped for -- this will be a hectic week-end with LOTS of performing for her.

REST OF THE DAY --

INadine felt better than I did, I suppose. After my nice bedtime Monday night I had another hard night resting. On Tuesday I didn't take any rests during the day, figuring that maybe my Monday rest-up had caused the tough time that night.

Nadine was going to drive herself to her flute lesson, but Sophia her teacher had a cold, and I insisted she not take a chance on going. She pracriced a lot, though.

We did go out later, she dropped off her library book, and I suggestd a meal out. She'd wanted to go out for Mexican food when her counts were abysmal, and I'd told her that when they went up we could go. She didn't want Mexican food, so we went to Aladdin's, a nice Greek place nearby -- she ate well, the atomosphere was nice, and Nadine and I had a relaxed time. It was well worth it going there -- I loved sitting next to Nadine and enjoying her presence. She relished the beef on her pitta roll with souvlaki and my souvlaki plate, and enjoyed the huge bowl of chili-lentil soup. We just visited with each other.

We also went out to get her passport ofr her RPYO tour to Quebec, but we missed the post office and anyway I didn't have her old passport book number. Paperwork is such a pain. I might have been wrong, but I had insisted she wear a wig for her passport photo -- -It just didn't seem right for her to have a bald photo on her passport for the next 10 years. Nadine had balked at it, but finally acquiesced. I found a passable wig in her original color, in the free box at the hospital specialty shop, and Nadine had gotten the picture taken at a pharmacy. Going to the post office to submit the application, I thought she should wear the wig again "just in case" She balked again but put it on -- she put a nice puffy black wool cap, with a nice brim, over it, and looked really nice and spiffy and healthy. She said it was scratchy. We slogged to the post office, and the man said it was too late and that we were best with an appointment anyway.

CONFLUENCE CALLS, PIANO PRACTICE
I made some Confluence-oriented calls and also some calls about the grouping of me, Curt, and Hope. I still find booking is stressful. :It seems like it should just be straight-forward but no. For Confluence, Nadine has other gigs; Tim has other gigs; even I sometimes have other gigs; mistakes get made in schedules, some dances take a while to book. for Curt and Hoe, Hope won't be at the Syracuse dance, and I tried to get it changed to time she and Curt could both do it (May 7th), only the dance was already booked that day. I still need to line up a caller for the Woodstock dance. I wonder if we can get another venue for May 7th -- the Ithaca dance might be cancelled, and anyhow there's so much more -- it could take pages and pages, but I don't want to write it and I doubt anyone would enjoy reading it anyway. I'm enjoying playing with Nadine and also doing some playing on my own; this means more coordinating though.

After that I tried to practice the piano, did nicely on arpeggios, started a new Czeerny exerics, and practically (or perhaps really!) fell asleep at the piano. I got up, made sure Nadine got her meds, and went to bed.

Oh yes, I asked Margaret (at the clinic) if I could change my appointment the next day so I could get to the homeschool meeting at the Kanack School. I knew that friends were indeed important, and this was the time to visit and also the topic was college.