Late December

On December 18th, Nadine finally got to visit with her friend Sylvia, the first time those two got together since Sylvia went to college.

The day before that, she'd had a quick transfusion. It's very rare that she has a quick transfusion -- usually she's in there a long time. That one, though, just worked. Why don't they all go so smoothly? I'm not going to answer that question.

There was a joyful reunion between the two girls, after which they trotted off and renewed themselves. As for me, I visited with Sue, dried the dishes while she washed them, and helped her peel and chop butternut squash at the table, which is the kind of interaction I just love.

I drove off into the cold night and had a lovely night alone, knowing Nadine was in excellent hands. I had a nice pracice session on the piano, then sat on the couch, realized how exhausted I was, and went to bed early.

The next day (Sunday January 19th), I got up still feeling tired.

Nadine arrived looking happy, and then things deteriorated. She announced she'd forgotten to take one of her important medicines. And then she forgot it again, and didn't get it until after her Rochester Philharmonic Youth Orchestra rehearsal.

To make matters worse, she had gauze rather than the Allevan pad on the wound site -- I was still worried about it getting infected after all these months and months of care, when it was just about to be healed. She in turn was tired of wearing those bandages, and refused change it, insisting it was fine. I said I wasn't taking her to her rehearsal until the bandage was changed. She blew up at me, and finally she very grudgingly let me change the bandage. We were both tense, which is a perfect way to bungle things -- I somehow squirted saline all over the place, drenching the area around Nadine and infuriating her (at least I got it where it belonged, right? }

When I questioned Nadine about the missed medication, she said something about being self-conscious with all those medicines at a friend's house.

WE BOTH NEEDED SPACE -- AND WE HUGGED

Nadine said she was looking forward to spending a night away from me. I said that I was looking forward to it as well. Suddenly the tension dissipated as Nadine looked knowingly and lovingly at me. We hugged.
_______

Nadine told me that being inside the house has felt uncomfortable and confining, and that she misses being "on the move". she said she'd like to open the windows, but sadly we can't have that in the middle of the winter. She said that driving to Sylvia and Claire's place was the longest drive she'd taken in a while, and that she misses traveling like we used to do.

Nadine was late to rehearsal, and I was late to the pleasantly crowded neighborhood "open house" party across the street that I'd been given an invitation to. I went, and felt like I was in a different world of designer furniture and up-and-coming (although congenial) young professionals, although I loved the book on the desk about the joys of handwritten notes. It reminded me that I would like to write some. There was amazing food, and a group came together and sang "Chestnuts Roasting on an Open Fire", and then "Let It Snow", two songs I confess are real favorites. I felt reassured that somehow some relics of what might have been a more peaceful past still thrived.

PARTIES AND PHOTO-SHOOT WITH CARRIE

Nadine, Claire, and Sylvia were going to do a "photo shoot" at Carrie's studio the next day, and prepared some stuff for it. Three friends with their pajamas at a photo-shoot, oh my.

Nadine's youth orchestra also had a party that day, which was much fun for her. and her friend Louisa invited her to be her roommate on the orchestra's April tour to Quebec.

Nadine, Claire and Sylvia had a "photo-shoot" with Carrie and Carrie's studio, with the girls driving in on their own; I had to get Nadine's medicines to the studio to take to Sue's house, as Jessie, the visiting nurse, was going over there to do blood tests. When I met them over there to deliver meds, they were having a fine time, including mixing up socks.

As for me, I did a bunch of work during the day, and also had frustrations -- the first few days alone, and I had so many real and perceived chores. It took over an hour on Mondahy to find the pringer didn't work -- all I was trying to do was communicate with the Hinsdale district about Nadine's paperwork, and it turned into a morning ordeal which led to me emailing the letter to Fedex-Kinko's to print up. I also wanted to cactch up on myh blog" as I had felt so bad about being behind on writing. I did it "with feeling" and was amazed at what I could remember. I also practiced hard at the piano and actually regained some lost technique. A day alone to catch up was nice.


FIRST DAY OF WINTER PASSED FORGOTTEN

I noticed that I'd let the Solstice slip by. So many other things were going on, that my "traditional" points that I notice were almost forgotten. The official beginning of winter. When Nadine was little, I used to mark it by making cut-out "snowflakes" with Nadine and tossing or dropping them so they floated through the air to the floor.

BLOOD CHECKING FOR CHEMO, and the Day

Jessie checked Nadine's blood again, but there was no result there. This was going to be BIG-BIG CHemo, complete with Intrathecal chemo plus dox-dex-vincristine. Because her counts had been 1000 the last week (amazing!), I was pretty sure she'd get it, but it would have been nice to know, as she couldn't eat early in the morning if she got it.

I got a phone call -- Nadine had forgotten her Prilosec for her reflux, and had a tummy ache, so I hotfooted it to Sue and Sylvia's house early, where Nadine was staying, and bought some Prilosec on the way. So no more practicing piano for me. I visited and took Nadine home before the TLC meeting.

Nadine was hungry again -- we went to Panera on the way home and Nadine got her beloved soup -- we sat togehter, with me ordering black bean soup and she ordering cream of chicken soup -- I just wanted her to EAT. She had samplings of each soup but had a total of less than I wanted her to have.

TLC MEETING
On Tuesday December 22nd there was another TLC meeting, which I thought would be introspective, but there were happy hugging girls at it, one coming out to hug me. The mood was jovial, with the usual cookies there. I wanted to connect with the other moms -- I suspect this would be nice for all of us. I've been thinking of putting together a parents'/caregivers/ network and it looks like we're approaching the time for it. There was a person who works with a national talk show, a vivacious black-haired young woman from Fairport.

Lauren told Nadine she should put some "meat on her bones" and said she'd love to give Nadine some of her "meat" (fat); I said I'd like to do the same. We talked of giving Nadine "rich" food and of me trying to avoid eating too much of it.

On a serious note, Nadine was looking thin again, and it was worrying me -- she was in excellent physical shape strength-wise, but the weight loss wasn't abating.

QUOTE FROM NADINE ON A LONG NIGHT WALK

Nadine wanted to take a long walk outside, and it was pleasant walking outside together on the cold-cold night.

QUOTE: Me: Can you tell it's slippery.
She: I don't know. I wasn't trying to slip.

THE NIGHT

Nadine burst into tears for no apparent reason.

BANDAGES
The bandage was entirely off again! I told her it mattered, and she finally let me put it back on. I was so flustered that I dropped the saline syringe, and had to use a second one. Me and that saline. It stays sterile, it stays safe, but I've lost count of the messes I've made.

AND FINALLY THE BANDAGES ARE OVER
Shortly after that, the wound was obviously healed,and the bandages came off for goo. Yay!!!!!!!!!