NOVEMBER -- SLUMP FOLLOWED BY WONDERFUL

NOVEMBER -- A LONG SLUMP, FOLLOWED BY A LONG WONDERFUL PERIOD

After Nadine's birthday benefit, starting the day afterwards, Nadine was pretty wiped out, and began a long slump period, one of the longest she'd had for a long while.

Transfusions, low counts, missed flute lessons, hard days. Often we were unable to get out even if we desperately wanted to, because of the low counts/immunity. She'd looked pale and things got worse. There were hard times getting to bed; bedtime took a long time once she got there. It took a long time to get her medicines down. She'd take long baths, and sometimes even they didn't help. She'd sometimes forget to dairy-free for an hour or two before taking Mercaptopurine-- she'd have ice cream late, and then have to wait up to take the med. Cups of "yellow paint" were sitting around -- couldn't she just rinse it out? I know I could/should have done it, but I rebelled too sometimes. She was on the couch a lot again -- also she got cranky, more than she used to get. After that nice long happy period, I could understand the disappointment at suddenly feeling awful again. There had been talk about doing college applications; she was understandably having a hard time with the essays, and feeling miserable didn't help. I was busy investigating college options for her, which was time-consuming and frustrating.

Long baths at night helped Nadine, but often we'd just start too late with them, shoving bedtime way too late.

I guess I started feeling pretty miserable too. Being exhausted didn't help, and I'm not known as a "night person". I was tired of being cheerful, tired of housework so I let it go, and then felt worse because of the mess. Okay, it didn't sound like the "medical" definition of depression, but it was the run-of-the-mill feeling depressed, and badly. I felt wildly inefficient to boot -- there was so much to do, and yet when I'd get a "break" (for Nadine's nap or if Barry was here), I'd sometimes feel so blitzed that I'd end up staring at the wall or walking around aimlessly thinking about doing chores and, well, not doing them.

NOVEMBER 6TH: There was a wonderful folk-music concert, a singer-songwriter of the type Nadine would love. We didn't go -- it wasn't worth the risk of her getting sick. Here she really needed a break and it didn't for us to go places. She was feeling awful.

NOVEMBER 7TH : A GIG FOR ME IN SYRACUSE

I really enjoyed this. Hope Greitzer and I had talked about playing together; dulcimerist Curt Osgood booked a gig in Syracuse with Hope and me. I'd been thinking of playing some on my own (without Nadine) and Nadine had been pushing me to do it. And there was my chance. And we sounded GOOD. Barry was here with Nadine. I drove out to Syracuse by myself, much fun in the car on Route 90; we all practiced during the afternoon at our friend Henry's house, and I was so pleased how tight and lively we sounded. We did plenty of "modern" tunes but we also did a bunch of traditional ones, some like Aunt Mary's Canadian Jig that I love and Nadine thinks are just too "corny" or something, but we did them with vigor. The fiddle, dulcimer and piano combo are nice as well. We took a break, went shopping with Henry for dinner food, came back and sang the instrumental tune "Kitchen Girl" in the kitchen as we chopped veggies; enjoyed Henry's amazing cooking, and took off to play. It was a fun success -- Bob Nicholson was calling, the dancers were jumping around, and another friend was tapping his feet as we played. Just plain fun and liberating. Afterwards, I stayed overnight at Harry's house. I have a tradition of taking "in bed" pictures of Nadine to chronicle our travels and the many homestays while performing; this time, I set up the camera, set the self-timer, climbed into bed and took a picture of myself. The next morning I got out before Henry was up, and enjoyed the drive back too. What fun.

NOVEMBER 8th:MUSICAL NEIGHBORS

I arrived home to see three jovial strangers in the driveway. The neighbors had come to introduce themselves and greet us. Bob, the congenial man next door, said he hoped his dog hadn't bothered me when it barked as I raked leaves earlier in the week. He was congenial. The man and his wife (David and Pia) across the street were very pleasant. After some pleasantries, David asked if Nadine was a composer. I said she was. He said he was one of the judges who had awarded Nadine the winning prize of the Howard Hanson Young Composers' Competition she'd entered and won earlier that year. He's also the chair of the Eastman composition department. It was a fun coincidence. A fun conversation ensued, in which he offered to meet with Nadine about places to consider for studying college composition. Pia is a violinist and she's performed with Sophia, who likes her a lot.

Nadine was on the couch, still feeling miserable. She missed the youth orchestra rehearsal -- she just wasn't up to going. This was really sad.

AWFUL TIME NOVEMBER 9th

Arch-Miserable day, jsut miserable. A long day with Nadine feeling bad and needing me right there, on the couch a lot. She was unomfortable and pale; it seemed like it would never end. Dishes were piling up; I felt unable to maintain the house even minimally. I was frequently bringing home "entree-and-sides-for-$6" take-home meals from Wegman's. I was so embarrassed about the mess that I didn't want anyone to come here, and I really needed friends.

I finally got so frustrated that I posted on the Rochester Homeschoolers' list. A lot of people were posting about the late-fall short-dark-days blues, which I get even under better circumstances. I posted about how I was feeling, how I'd have loved some company but was too embarrassed to have anyone over. I got an amazing stream of wonderful responses, including people whom I haven't yet offering to come over and visit, one even talking about doing housework together. I was overwhelmed with joy and yet somehwo couldnt' bring myself to accept the offers then. But I hope I do, and soon.

TUESDAY NOVEMBER 10th LOW BLOOD COUNTS AGAIN

More of same slump. Jessie the /nurse came over and did Nadine's bloodwork. Nadine felt miserable.

Her blood counts showed an ANC (neutrophil immune count) at about 100, super-low, perhaps the lowest since she was in the hospital. She needed a transfusion again. The platelets were low too, around 12, rotten-low, worse than when she was admitted to the hospital in May. I probably missed my piano lesson with Nadine feeling too wrteched for me to leave. I missed theory again -- it's just been too hard to get to it, sometimes because Nadine hasn't been well, and sometimes because I've felt exhausted or over-committed.

Around then, she also was nauseated a lot, and spent much time by a bucket. She only threw up once, but that was a big one; after that she felt considerably better, though.

MIXES AND MOVIES
Jessie and Nadine have been exchanging music "mixes", placing groups of tunes on CDs. It's a nice bonus to their relationship. I've benefited too, as I like Jessie's choices. Nadine has played me other mixes she has received, and treasured, from friends, including from Not-back-to-school-camp.

Nadine has said that watching movies feels nice to her, and if that helps when she feels bad, it's certainly helpful, although I don't want her to stay up too late. When Barry is here, the two watch lots and lots together.

Nadine is excellent at picking movies for me. I'm not usually fond of movies, and sad or violent ones upset me too much. There's so much real-life sadness and violence. Why watch it for fun? Nadine picked three excellent movies that we watched together right on the couch at different times -- "Up", "Pride and Prejudice", and "Ratatouille". I loved the togetherness with her along with the movies themselves.

POSITIVE NEWS ON SPIT

She'd been able to remove her transderm patch around the beginning of November, and this time she went for quite a few weeks without any more spit.

NOVEMBER 11th A WILD CLINIC DAY AND TRANSFUSION

A wild day at clinic -- Veteran's Day, and everyone was trying to get kids in because school was out.

I had called and emailed, pleading to allow Nadine to move her appointment and asparaginase shot earlier than the 1PM appointment that had been assigned to her. A special friend from Syracuse was coming over to visit with Nadine-- Dan Duggan, a wonderful hammer dulcimerist who had recently been declared cancer-free -- and it felt very important to get to see him.

I heard back that we could come at nine but Nadine might have to be on the couch instead of the treatment room for her hour-long post-asparaginase wait unless there was a cancellation. The prospect didn't thrill us, but it was better than nothing.

We lucked out -- a treatment room came available. And excellent news too, because it turned out that she needed a transfusion of two units of blood because her hematocrit was so low. It would take at least 3 hours, and having a "real" place to wait mattered.

The room turned into a party. A TLC friend, also there for a clinic appointment, came over with her mom -- she'd been diagnosed at 18 and we'd met at the hospital on the picnic deck. She was about a month "ahead" of Nadine and was already bald (and looking great) when we met -- I'd considered her a "pro". She had shown me her Broviac line (what the surgeon wanted to give Nadine after her first port failed) and graphically explained why it was awful. This had bolstered my resolve to make sure Nadine got another port and not the Broviac, for which I'm still grateful. She had a different type of leukemia than Nadine had, and had finished having a bone marrow transplant -- she had been lucky because two of her siblings were "perfect matches" as donors. They described some of the process, including the amazingly large amount of marrow had been "harvested", and the fine points of the doctors discussing how quickly to "run" the new marrow in. Yet another world. The very aggressive treatment for this kind of leukemia includes radiation and bone marrow transplant. It was over quicker than Nadine's but iwas nothing to be envied. Now the girl's hair was growing back thick and lovely; she looked energetic and very well.

Another TLC girl arrived in the room, also full of nice hair; her mom was with her. So we all had an animated and somewhat boisterous "party" in there, chattering away, both moms and daughters.

On the way out (on time!), we ran into Eric the social worker, radiant as always -- he said he knew someone to whom he wanted to introduce Nadine, undoubtedly another young person --

A VISIT WITH DAN THE DULCIMERIST WHO IS CANCER-FREE

Dan Duggan is a wonderful dulcimerist/composer and vocalist with a lyrical and forceful style and a beautiful heaert. He was diagnosed with throat cancer a while before Nadine, and was treated near Syracuse. He was hoping to visit Nadine -- he said he was treated at the Clifton Springs center, and liked it. He and Nadine had a both humorous and serious chat about the fine points of dealing with cancer. Interesting and informative vignettes. He said he felt oncologists are usually wonderful to get along with and that he'd had harder dealings with surgeons -- he and Nadine shared stories.

His friend Tom Hodgson came as well. Tom is a gentle, radiant guy, and a crystal-clear wonderful guitarist. We all met about 7 years ago when Nadine and I played at an open mike at the first Heart of the Alleganies Festival, when she still played waltzes on the flute and doubted she'd be able to play reels on it. Tom also played some music for me than. Tom has been supported my and Nadine's musical development, coming out to hear us in Rochester as well. He and Hope Greitzer, whom I love being with and playing with, came to the hospital and did a glorious concert for us in Nadine's room.

The afternoon was wonderful, ending with Dan playing a tune he composed during his illness with Tom accompanying him on the guitar and Nadine happily watching from the couch. What an afternoon.

I'd have loved to have them stay longer, but they left before Dan's performance at the planetarium that night.

Sadly, Nadine couldn't go because of too many people and too low blood counts. I thought of going, but decided to stay home with her instead. I didn't make it to my theory class either. I think that the previous week was the last week I went.

NUTRITION AND COMPLEMENTARY MED

During the middle of the visit with Dan and Tom, I got a call from the nutritionist from Pluta Cancer Center, whom I had called to find out about nutrition ideas to help Nadine. After she interviewed me, she said that I was doing pretty much what she would have recommended anyway. Yay! It means a lot -- I'm still searching for whatever I can find.

I also wanted to find an expert on herbs and complementary medicine, and she suggested a naturopath at Clifton Springs, whom she thought very highly of.

SURPRISE -- after I hung up and re-joined the conversation with Dan, Dan mentioned, with much praise, the SAME naturopath. He didn't know I'd just been recommended to him only minutes before he said it. Sounds like a winner.

VACCINE ANGST

It was a painful decision to give Nadine the H1N1 vaccine. I don't like them, I don't like or trust the pharmaceutical companies, I don't like the additives. But I also don't like the complications Nadine could get if she caught it. Finally, after much ruminating, I decided to give it to her. But I was determined she'd get it without the mercury-laden preservative Thimerasol that was in the multi-dose vials, which were all that seemed to be available. It took me about 3 agonizing, tiring days of searching, but finally I managed to locate some thimerasol-free vaccine, and she got it.

THURSDAY NOVEMBER 12th

It was a special morning in that Nadine went to her first restorative yoga session. I had been hoping she'd be able to do yoga for help for herself. I finally called yoga studios, and after a few no-answers, I got a "live" person. He was a wonderful yoga teacher, who in fact was recommended by people I'd asked about teachers. After I described Nadine, he said he'd about Nadine in the article written on her, "Flutist Plays in the Key of Life, and offered to work with her as a gift. It turned out he, too, played music. November 12th was the day we went for Nadine's first class. Of course, the getting-there was far from smooth -- we were both cranky and growling at each other; we went to the wrong place and couldn't find the right one for a while; finally we got there -- it was behind the Zen center, and just walking through the garden made us feel wonderful.

The session was perfect. He worked on gentle restorative yoga with Nadine, encouraging me to photograph the postures, but Nadine didn't want the photographing so I drew her instead, complete with the arrangements of pillows and props involved, hard to remember. The pillows and blankets were important, for relaxation in whatever posture she was in. Nadine seemed very much "into it" and I'm glad. It all just looked "right", which it was. Nadine (and I) also got treated to listening to a recording of a flute played in the Taj Mahal.

The yoga was very meaningful for Nadine, and she wants to continue, and in fact she has practiced it.

Afterwards, I shopped for food, a necessary but grumpy process, and we went home.

That evening, Sue Klassen came over for dinner -- it was the first dinner served to a guest at our place, and Sue has always been very special. There have been so many times we've had meals there, and hadn't had any place to invite her to, although I'd often brought food with me. Finally I could "entertain" friends again.

EREK HERE AGAIN

It's been delightful how frequently Erek has visited. He was here Saturday through early Tuesday. Nadine was feeling icky a lot of the week-end, and his presence was perfect. He is excellent at helping her exercise. I love watching him sitting with her. She just loves having him here. I wasn't getting much rest, but didn't let it mar my enjoyment of family time.

SUNDAY NOVEMBER 15th

Nadine missed her Rochesteer Philharmonic Youth Orchestra concert because her counts were low and she could get sick from a fellow orchestra member.

We compromised somewhat by getting her in for the official orchestra phography. Barry and I brought her to the theater (masked); of course we'd forgotten her head scarf (she'd chosen a nice blend-in brown one), so I raced home to get it. The orchestra was practicing and sounding magnificent when we arrived. I watched from the audience area, marveling at the sound and at conductor David Harman's artful conducting, like a combination of ballet dancer, musician, and dedicated caregiver, boyish in face and competetent in music and humor. Nadine watched from the "wings". Finally it was photo time and Nadine joined them with me waching from the balcony. The photographer became a director himself, orchestrating the angle the instruments were held, decreeing where musicians should put (or not put) their hands.

I saw orchestra friends; Nadine saw some of hers as well. I felt wistful, knowing Nadine was missing being in this wonderful concert, and also knowing it was too risky.

That night Barry planned to leave before dinner, but ended up staying for a family meal with me, Nadine, and Erek.

Erek, Nadine and I had a rousing game of Hearts, and eventually went to bed.

NADINE GETS A FISH AND NAMES HIM FREDERICK

Nadine got a fish! Erek and Nadine went to the pet store on Monroe St with me to pick one out. Nadine had been sorely missing Felicity, her beloved cat, and while it wasn't feasible to have a cat here, a fish was do-able. I don't know whose idea the fish was, but it was decided.

As Erek's plane was canceled (yay!), we could get the fish later in the day. Nadine picked out a pretty betta fish with red and blue coloring and a fancy-looking fin. It was harder figuring out the bowl, rocks and (fake) plant, and home we went. The operation actually took quite a while. The fish was installed on the long table in the dining room. He was named Frederick. At first he seemed pretty uninteresting, but after a while, he turned delightful, swimming gracefully. He began building a "bubble nest", known as a sign of a happy fish.

EREK'S LAST NIGHT HERE

Nadine suggested a game of Settlers, and put on some of her lovely music. and all had fun. Later on, Erek was sitting on the couch with Nadine, and he fell asleep right there next to her. They might have been watching a movie.

TUESDAY NOVEMBER 17th

Erek left at 6 in the morning, and since Nadine was up, we all took him to the airport. Sad farewells as usual. At lest he'd be back on Thanksgiving.

She'd had a rough hard-to-sleep night the night before. I could understand her frustration and still I was upset when Nadine got upset at me for trying to get her to get some rest. After she finally went to bed, she slept for a large part of the day. Her patterns were getting reversed -- stay up so late, sleep in so long. I let her sleep, although I had misgivings; later on, after a conference with Margaret, realized I needed to be more pro-active, and succeeded.

Jessie came and did the usual bloodwork. Nadine didn't have her appointment with Kritin the physiucal therapist.

WEDNESDAY NOVEMBER 18th
CHEMO DELAYED; TRANSFUSION INSTEAD; JANE AND BETTY VISIT

Nadine was still having a hard time of it. Theoretically she was having another chemo treatment, and I'd hoped that after her previous right-on-time chemo cycle, with the blood counts up at the right time, she'd "make a habit of it" and have another one. However, instead her ANC neutrophil count was still a dump-level 100 and her APC wasn't much more -- the APC had to be 1000 for her to get chemo.

So Nadine sat for yet another transfusion -- 2 more units of blood. A week after having another 2-unit transfusion. She was scheduled for a biopsy the following week (again) if she wasn't ready for chemo.

This might have been Happy Feet day -- we can watch movies in the treatment room and I love the togetherness we can have, even there, with simple pleasures like very happy films.

Both of us were down in the dumps after we left, again. Having to do a food shop at Wegman's didn't help. I hate doing food shops. I hate shopping, period.

Nadine really wanted to see Jane, our wonderful keyboardist friend, Much as Nadine had been wretched, I called Jane and she came over. Jane is an inspiration as well as a wonderful keyboardist. I remember listening to her CDs before I even started playing dances. I also trusted Jane to take Nadine to her very first out-of-town gig alone; the two of them have performed together quite a few times.

Betty Wayman also came over. Margaret Henry (friend and theory/composition teacher) had planned many times to visit us, and with her mother ill (in Canada), plus Margaret herself getting sick a lot, this hadn't happened. She had told Betty that I was feeling pretty awful. Betty called after the theory class, and wouldn't take "no" from me. It was a good call -- I really did need someone to be with. She arrived -- I left Jane with Nadine, and Betty and I had a nice, satisfying walk, during which I was able to share (actually pour out) my persistantly yucky feelings.

After Betty left, I joined Nadine and Jane and the three of us did some music, me on piano, Jane on accordion, and Nadine on flute. Later I tried the accordion and Jane taught me a little about the it -- I hadn't realized that it is really a wind instrument, and that tones could be sculpted. Nadine said I should continue. I'm not sure if I will. Carrying around a keyboard plus an accordion?

Jane's presence helped to perk up Nadine.

NADINE'S THIRD TRANSFUSION IN TEN DAYS!! (Friday November 20th)

Nadine had an extra visiting-nurse visit for blood-drawing in the morning, and a had a surprise transfusion.

Yep, Her counts were still way down, and her energy level was down. She might have even lost some more weight, even though she seemed to be eating more.

Margaret called with a rush-rush, as the clinic was going to close -- Nadine reeded a tranfusion and if we got right out Nadine wouldn't have to have the transfusion in the emergency room. I dreaded the ER for many reasons, including the risk of her getting sick from other patients. I was in such a rush that I forgot that Kristin the physical therapist was coming over, and had to embarrassingly explain my absence later.

Nadine made jewelry in the treatment room again -- many nurses have come and admired it. Janet, the lovely secretary, admired Nadine's beautiful hand-made mega-thick fluffy scarf, and suggested NAdine make a business of it. Janet saw Nadine's jewelry and promptly ordered a pair of custom earrings; later she ordered more.

I asked Eric (the social worker) about college recommendations for Nadine, and he said he'd be happy to do that for her, indicating he'd enjoy "singing" her praises.

Nadine was feeling so weak that I almost had to put her in a wheelchair when we left.

FRANTICALLY TRYING AND FLEEING TO AVOID CATCHING FLU OR OTHER STUFF

I find myself bounding into empty elevators at the last minute to avoid riding with anyone. I sometimes mask in the elevators or around people -- I feel a need to protect myself because if I get a cold, then Nadine can be vulnerable. I notice myself turning quickly away from people in a crowded supermarket, sanitizing my hands if I touch anything much outside my house or car (or another person), and asking people to sanitize if they will be near Nadine. On Sunday the 22nd, I darted through the mall in search of shoeboxes for Nadine's room-organizing, trying to avoid anyone I could. How strange things have become.

In the hospital pharmacy I had a mask on -- although usually I get the plain yellow ones, this time I had the Mickey Mouse mask. There was a jovial-looking man sitting on a bench in a plain mask. "Mine is cuter than yours is", I quipped, referring to the masks, and a lively conversation ensued. He was recovering from open heart surgery and might have to mask for a year.

We've missed many events trying to keep Nadine (and even me) from extra exposure to disesae. The singer-songwriter on November 6th; the Rochester Philharmonic Youth Orchestra concert (that she was in) because her "counts" were so low.

NOVEMBER 21st-22nd -- FINALLY SHE PERKED UP

That says it. She was finally feeling better again. Finally.

Around that week-end, Nadine was going through a time of really really really wanting to get her room organized. For that purpose she was collecting shoeboxes, sorting things out, spending much time at it.


For me, hours and hours of raking leaves in the cold night. It was exhilarating, using my body for the purpose. Community leaf pick-up was that day, and I really wanted to do the job. Even Nadine came out a little and helped, before going back in. The driveway was long, so it was a lot of back-and-forth in the little wheelbarrow in the garage. Good plain work in the cold, and as usual it warmed me up.

NOVEMBER 22nd

I drove around town, looking for shoeboxes for Nadine to organize her room with, going to store after store -- finally slogging through the Greece mall trying to dodge the huge numbers of shoppers (didn't want to get sick!), darting in and out of flashy shoe shops, finally getting somewhat fewer than I wanted, but enough for then.

MONDAY NOVEMBER 23rd -- A VERY VERY GOOD DAY

Oh, this day was a winner! Finally, finally. Her low-low, awful counts and protracted, scarily miserable state since November 2nd had transitioned into first better and then wonderful.

Mary Joan came and worked on Nadine on the couch with her wonderful massage and talking=through. She hadn't seen Nadine in a while due to her own surgery and then viral stuff She worked on Nadine asking herself what was needed, and "rest" was the answer. I also asked Mary Joan if she'd be willing to check on me and she said there was something going on in my upper back and suggested a chiropractor.

Later that day Nadine wanted to walk with me to Archimage so I could get the journal she said I should have. We walked at a beautiful pace together down the street. It was a beautiful day. Leaves were gorgeous, and we'd stop periodically. I was amazed at her brisk cheery pace and lack of tiring out. Arriving at Archimage, we browsed the racks of beautiful blank books -- she said that the one i picked should feel nice to me. I finally found one, and with a black and luminescent silver-and-gold-colored design, and we left.

To my surprise, I felt an immediate urge to write in it, but couldn't find a suitable pen, so we walked back, with me thinking writing about our feet tapping on the ground. There were some gorgeous leaves on the way. After we got home, I wrote that getting the journal was the right thing to do, and also that with all the frequent dishes, maybe instead of complaining or lamenting, I should think loving thoughts of how much happy eating the large number of dishes represent.

LAUREN SAMPLE TAKES ME TO RESTORATIVE YOGA CLASS

Lauren Sample is a wonderful woman, a member of our homeschoolers' group, who took it on herself to coordinate the amazing "care" network for our family during Nadine's illness. She also is a lovely friend, a cheerful person with a peaceful nature, a hard worker, and fun to talk with. She impressed on me how important it was that I learn to ask for what I need and not pretend to have it "all together". As she too has gone through living with a child with long-term medical needs, there was no way to avoid listening to her advice.

Lauren had invited me to drive with her to Honeoye Falls for a restorative yoga class taught by Audrey, one of our homeschooling moms, who teaches yoga and offered me the class as a gift. I probably wouldn't have gone otherwise, but I also wanted to see Lauren, so she picked me up and we had a nice talk on the way. We were late, and narrowly missed hitting a deer in the misty night. There were lots of people on mats. The class was passive postures in different positions, with props. Long,restful postures, one on belly with the bolster angled up and legs to the side; another on back with legs in "butterly" position, shoulders sort of hanging off the bolster. While I was there, I felt and thought that this wasn't at all for me; I needed something active that would "work" my body. On the way home, I talked to Lauren about it and she said she felt the same.

The next day, surprise, I found that some nagging shoulder pain had gone. I'd been pretty much in constant pain. Lauren told me that she felt a lot better too. And I had the urge to do more restorative yoga, and have done some at home. So much for first impressions and fast judgments.

NADINE'S YOGA CLASS

Tuesday was also Nadine's second day at the yoga studio. This time the work was on more active yoga, a number of hanging postures and other ones. Nadine was obviously energetic and in excellent shape. The two of them also did some music together, flute duets, which was nice. She seems really up for this.

TUESDAY NOVEMBER 24th

I had set Nurse Jessie's visit for later in the afternoon, but I realized it would be better to have her come earlier so we could get Nadine's blood results the same day. Nadine was scheduled for either a bone marrow biopsy or chemo, depending on if her counts were up or down. If she got the biopsy, she couldn't eat breakfast before clinic, and as she'd been eating well, I didn't want to keep her hungry unnecessarily. Her ANC the past Thursday had been 100, and APC 200, so I didn't expect her APC to be up to 1000 (protocol for chemo) just 5 days later. So I expected a biopsy.

However, I forgot to call Jessie to ask her to come earlier, so she did the bloodwork at about 2:30. Sure enough, the results weren't in when the clinic closed, which meant I wouldn't know until the next day. The only consolation was that as her appointment was at 9:30 AM and she gets up late, she wouldn't miss that much eating anyway before we found out. But I still felt like a bad mom because of the mistake.

After Jessie left, I visited with Nadine, practiced the piano, and went to my piano lesson, after having missed two. I finally was "there", having worked SO hard on very technical and slow piano work such as perfecting nice, even fingering on arpeggios, wrists moving smoothly up and down the keyboard. I had finally attack the things I'd let get in the way of technique; I was proud of my painstaking work. The slow arpeggios and the Czerny etude, simplist and childish as they might have sounded, really did help me play Mozart (and probably everything else) a lot better.

Nadine went to the Teens Living with Cancer get-together at their office, having missed the one 2 weeks earlier becasue she had felt so awful. I've hoped to put together a parent/caregiver listserv and/or network, and haven't quite gotten to it.

While Nadine was at the meeting, I tried to get my pre-Thanksgiving groceries at the big super-Wegman's in Pittsford. Ha ha ha. I arrived and realized I'd left my purse at the TLC office, drove all the way back to TLC to get it, drove back to Wegmans, and realized I didn't have enough time to do the shopping.

WEDNESDAY NOVEMBER 24th: COUNTS UP! NO BIOPSY ALTHOUGH NO CHEMO. NADINE FEELING WONDERFUL. Raymi, Kate and Erek Arrive

Margaret called early in the morning. Nadine's counts were impressively up, although not up enough for chemo. The doc decided no bone marrow biopsy was needed, as her counts were obviously rising even though chemo was still delayed.

The delay was excellent news for Nadine's planned events during the next two weeks. Since Nadine already felt really wonderful, she would probably also feel wonderful for our Thanksgiving week-end with the whole family here -- Erek, Kate, me, Barry, and Raymi and of course Nadine. It also meant we'd be out of clinic fast that day.

Also, with chemo expected on Dec 2nd instead of Nov 25th, Nadine had an excellent chance of doing well for the AllState week-end, which was an honor and was being held right in Rochester at the Radisson Riverside Hotel December 3rd through 6th. Kids were coming from all over the state for the event, and Nadine was in the symphony orchestra, considered the highest level there. She'd probably placed in the top 4 flutists in the state. If the chemo had been "on time" it's likely her counts would have been really low by then.

Raymi arrived around 1PM. We went to clinic together, where Nadine got her asparaginase without fanfare or delay and we were out at a decent hour. This was nice. Very nice.

END OF THIS CATCH-UP

So began Thanksgiving Week-End, to be posted separately. Enough for now.

Journeys, Nadine With Teens Living With Cancer Performance Including Nadine's Presentation; Snowglobe.

This was the big gala performance/celebration of the girls, including Nadine, at Teens Living with Cancer, featuring each girl choosing/creating a character and vibrantly representing her personal journey. A celebration of Life, connection, even humor, of and by these wonderful teens who've been hijacked into this danger and facing it. And a beautiful time for these girls to get to know each other, form friendship and connection, learn about themselves, try new stuff and also have fun.

NADINE'S PERFORMANCE --- She appeared on the stage, sitting cross-legged dressed in black, playing “The Icy Drive”, her flute piece. Beside her a snowglobe was projected on a large screen, with “snow” falling piecefully from it. Suddenly the snowglobe shook violently. Pieces of hospital paraphernalia began to infiltrate the falling snow – syringes, gauze, pieces of lab print-outs of blood levels, even a hospital parking permit taking over and crowding over the snow, constant and sinister contamination of pure white snowy beauty with hospital stuff, the stuff of illness and disruption, of cancer crowding out normal cells. Meanwhile, on the stage, sinister creatures (the Push Theater people) crept behind Nadine as she played, and began to dump huge snowlike clumps of hospital gauze onto her. She continued to play the flute until she was overwhelmed by the onslaught and stopped. It was all scary. Then eventually she picked up her flute and began to play again; the shadowy creatures stopped throwing gauze and slunk away. The tune she was playing was a different one from the one she started with. Both tunes had been composed by Nadine – the first one (The Icy Drive) quite a while ago; the second, as yet unnamed, was a slow beautiful minor waltz she had composed in the hospital.

Later, Nadine explained that the imagery was of herself unknowing being inside a snowglobe when all of this happened.

The snowglobe full of contaminants reminded me personally of the broken-up shards and relics of nature and households that float in the ocean after a tsunami.

Two months later, she named her waltz Shadowglobe.
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PREPARING

There were weeks of rehearsing, journaling, brainstorming, creating computer animation and artwork. A skilled, warmth-infused group of professional-quality helpers supported them as they conceived, worked on, practiced, refined, and performed -- photographers,, the Push Theater Company (which performs at GEVA), Carrie Matarese, superb photographer and operator/owner of a wonderful studio; Charles Cote to facilitate writing and thought; a computer animation specialist; videographers. Lauren, the group's founder, there for everything.

The exact contact was kept secret from me (and the other parents) although I noticed little clue-lets (or teasers) -- Nadine asking desperately for a snow-globe -- a SNOW-GLOBE?; collages were being made; Nadine rabidly collected and stockpiled copious amounts of hospital/medical scraps and memorabilia (enlisting Nurse Jessie for more). Biohazard bags, gauze, parking passes, test tubes, old (needle-less) syringes. She studied computer animation. Her skit was so involved she needed an extra rehearsal session; I suspected her flute might appear. Once when I arrived to get Nadine, all the kids were in the front lobby in a big vibrant circle, with video happening. Another time, I picked up Nadine at Penfield High School where she was working on her computer animation. She was complimented for her diligence.
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PHOTO SHOOT

I was invited to see the end of Nadine's photo session. I walked through the darkened lounge into the bright-bright-lit studio with white reflectors and hanging portrait lights; disco-type music on the stereo; Nadine was bald-headed in black leotard and silky black culotte and amazing make-up, her eyes highlighted with dark liner and white eyeshadow; her lips thickly covered with a pattern with alternating sections of deep red and gold lipstick . She was accessorized with an enormous complement of accessories fashioned from the medical paraphernalia, including a bow,made of a long strip of red Biohazard bag, adorning her head. Lights were flashing and strange glittery light-catching streamers moved through the air. Nadine looked high fashioned, ”glam” to the max, even her sultry expression perfect. She was also stunningly gorgeous. Carrie, with her camera, assumed odd postures including lying flat on the floor, busily snappy pix from many angles.

Nadine's flute came out. She sat cross-legged on the floor in her black costume and make-up, playing the flute. More pix. One of the Push Theater people crept out behind her and placed his hands on the flute, making it look like there were four hands playing it; Amazing all around.

Nadine was obviously having such a BLAST! A whole new world for her.
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When I took Nadine to the dress rehearsal, I saw girls squiggling around, then sitting together on the stage, legs dangling; tech people getting things right or not, the stage lighting, the huge fancy hall with dinner tables; a display for the donated silent auction items, which would include Nadine's chain maille necklace.

As the girls did their informal antics, their body language showed that their deep closenss was not a staged act.

There was a huge poster of each girl from the photoshoots. Most were "portrait" pictures, gorgeous or humorous. Nadine's was brave and different; even chilling although still beautiful. Her face was stark with much make-up; she was held by many people, and there were medical stuff all around -- supplies, someone was pointing a syringe at her arm.
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THE EVENING

The evening included a gala dinner, and honored the teens and their families. The honoring included teens who died of cancer too young (but not before they'd had some living), honored those who are long-term survivors, honored the rest of them, honored the families and support networks, honored all the teens touched by cancer, celebrated with all of them. Candles were lit.

Families, and many of the hospital staffers we knew attended. Although tickets were expensive, families of the teens, and the nurses and tech people, were invited free. Many doctors came. It was a treat to see folks whom I had only known wearing lab uniforms and wielding syringes, notepads and blood-pressure cuffs, looking dressed up and gorgeous. Nurses from Hospital Wing 414 and the Hem-Onc Clinic were there; Emily was glamorous; Renee the tech who welcomes teens to the clinic wore a softly lavender-flowered dress;; Jessie the visiting nurse came with her dapper-looking husband; Dr. Milner was there; Dr. Bruckner with her daughter; Eric Iglewski looking radiant as always; many others. I got Nadine's beautiful chain maille necklace there right on time for the silent auction; a card was set up and I got to place them carefully with the other jewelry.

We were assigned a table close to the stage and found a spot perfect for video. There were nice conversations. I spoke with Bethany's mom -- Bethany is a bit older than Nadine and also has battled ALL, which is what Nadine is battling. We talked about maintaining contact, and I hope that happens.

Lauren introduced the evening, and spoke of her own experiences. Someone spoke honoring those teens who had died of cancer. Candles were lit. It was a solemn time for me, and I'm sure for others as well. There was other talk as well.

And then the show -- lights on, the girls came out. Each did a wonderful performance based on her experience with cancer. They were all amazing, each a literal, symbolic and completely unique presentation of her "journey" fighting cancer. Imagery included soccer shoes; red high-heel shoes; a long platinum blonde wig; striped socks; a rose handed to a mom. Nadine appeared in one skit in a black top hat. The evening ended with a girl beautifully singing Over the Rainbow with others around her; I felt so "moved".

VIGNETTES OF PREPARATION

Once I picked up Nadine at Pennfield High School and she was working on computer animation. She was complimented by the animation specialist on how diligently she worked to make her complicated idea a reality.

Nadine rabidly collected hospital and medical “stuff” and scraps. Pieces of Biohazard bags, gauze, packages from disinfectant wipes, the wipes themselves, masks, the works. Once she asked Jessie the nurse for help; we were at Ronald MacDonald House at the time. Jessie took Nadine out to her car, parked outside. The two of them looked like dumpster-divers, diving headfirst into the back of Jessie's SUV from which Nadine “scored” blood-drawing tubes, (needle-less) syringes, and other medical paraphernalia that Jessie cheerily contributed to the “cause”.

Before the photo shoot I got an interesting peek when I picked Nadine up from Carrie's photo studio, located in a artful-looking wonderful complex of lofts on Railroad Avenue (there is a front gate where one has to press a keypad to ask for access). It was about 3:30 in the afternoon, and I was waiting outside; they were running late. One or two moms were waiting outside. One girl came out of the studio, threw up, and went back to what she was doing. There was much discussion; dressed-up girls paraded in and out; it looked lively.
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MY MUSINGS (grandiose but real thoughts)

It was celebration of life, of connection/community, of joy, and the archetype of the Righteous Fight, the battle to slay the ultimate enemy which I believe, whatever the rhetoric or rationalization, is never a human being. I believe that enemy is disease, untimely death, injustice, poverty, suffering.

Here are these beautiful teens, in the beauty of their wild emerging youth, tossed into this life-threatening battle, and doing a noble and wild job. All their resources are there-- their gentle sweetness, their humor, their verve, their outrageousness, and their "internal warriors". They are heroes of heroes, thrust into the this all too young.

Fairness would say they should be doing very different teen things, both serious and frivolous, as they transition to adulthood. Instead, they've been hijacked onto a very different, and very scary, journey, and they're taking it on.




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Nadine's 18th Birthday and Wonderful BIrthday Benefit

18 years old! November 1st! Nadine sat on the living room couch and opened a box of beads from Erek and Kate -- a variegated cascade of assorted beauties, including some utilitarian, some silvery, some whimsical, some completely outrageous. It looked like Kate had gone gloriously and ecstatically wild in the bead store, exuberantly expressing love for beads, beauty, and Nadine all at once. None of this was lost on a very happy Nadine.

Nadine responded with glee when I presented her with a miniature Canon camera, the same type as she'd coveted when seeing Erek's and later when Erek surprised me with one of my own for my birthday. This surprise had involved more work and angst than I'd anticipated -- the "convenient" online order process had been full of time-draining snafus. But it was all worth it.

I lost count of the times I sang Happy Birthday at random moments.

Big brother Raymi was going to be coming up from Pittsburgh, but he was sick and didn't make it. He was very much missed and Raymi sounded very sad on the phone; However, he would visit later in the month, so at least we'd see him.

THEATER EXPEDITION WITH TLC

Nadine had a big day. She was going with her friends from TLC (Teens Living with Cancer) to see Push Theater Company's production of Dracula plus other dance-acrobatic-theater pieces at Geva. They are truly amazing. They had worked with the TLC "kids" on the Journeys production, and were going to meet the "kids" in the lobby.

To mask or not to mask was an inevitable question the theater. I was for masking; Nadine didn't want to mask, insisting that she'd be sitting with careful people whom she knew. Finally I gave in. She happily joined Leah from TLC and went inside. They all had fun.

Afterwards we drove off to Webster for Nadine's big birthday benefit.

NADINE'S BIRTHDAY BENEFIT

The benefit was amazing!! In addition to being fabulous music from people we love, It brought together people from many of our "worlds", classical music, traditional music, homeschooling, contra dancing, hospital, close friends, new people I hadn't met.

It was conceived by the members of Crowfoot, the wonderful band that Nicholas Williams is in. Nicholas is a wonderful traditional flutist from Quebec and was one of Nadine's first flute teachers; we have heard him and his band since, and Nadine has sat in with them.

Ralph and Judy Hunt, organizers of the Heartland folk concert serious, graciously organized the entire benefit -- they found the venue (Harmony House), made posters, baked food, publicized it, the whole thing. When I went to pick up the gorgeous glossy full-color posters including pictures of Crowfoot and Nadine, Ralph invited me for dinner and when I didn't stay, he sent me home with a wonderful loaf of his home-baked bread. Posters got put up around town by them and by me.

On the way there, I enjoyed a beautiful sunset over Route 104.

There were many people, glorious music, getting to see the Crowfoot people, Nadine visiting with Nicholas Williams, the wonderful flutist from Crowfoot who had done so much teaching her and now was doing this benefit.

The benefit brought together people from so many of our "worlds" -- classical music, folk/traditional music, hospital/medical; homeschooling; contra dancing; and others.

Sophia, Nadine's classical flute teacher, quipped that she wondered why Nadine did classical music when it was so much easier for her to do traditional music and she already was accomplished.

In the intermission I introduced Nicholas and Sophia, two influential, wonderful teachers of the two different genres, and got a photo of Nadine with them.

The room was full. Many other friends came as well -- the -- all the Thurstons; Brian, Rafi and Doriel Pryntz-Nadworny; Jessie the visiting nurse; Lauren Sample from RAHA; Susan Basu, the manager of the RPYO; people from RAHA, the Rochester Flute Association, Sue Klassen, Betty Wayman, the man who sang Autumn Leaves at the Golden Links songswap; Bob and Ron from the Rochester Contra Dance; John Wobus from Ithaca;

When we arrived, Ralph and Judy were setting up; Ralph had baked gorgeous pastries, teeshirts with a hand drawing of the band and a photo of Nadine were there; Ralph gave me some delicious soup, which I ate so eagerly that I burned my mouth.

We were given a beautiful glass vase with a ribbon on it and some hearts in the bottom, with some gifts from the Ithaca contra dance.

I was asked to introduce the band -- getting up there, I talked of gratefulness, to everyone, the wonderful band, the beautiful friends, and Ralph and Judy of Heartland, that the name Heartland certainly suited them.

And the music!!! From the moment Crowfoot was setting up and checking the sound, I was awed by the beauty, the interweavings of the flute, accordion, violin and guitar, the way they blended yet each instrument sounded individual and beautiful; the warmth and expertise and flow of the sound. The concert itself was amazing -- I didn't want it to end. Jaige, the violinist, sways like a willow when she plays; Adam crafts each guitar sound with care and energy; Nicholas is so glorious at his flute with his warm, rich and rhythmic pulse that has always been a huge inspiration.

Afterwards, we stayed and visited with people, and Nadine and Adam had a nice relaxed visit. After that, back home and to bed.

The benefit was so wonderful -- it did raise needed money, but even if it hadn't raised a cent, the gift of the music, the friends, the warmth, the love, made it an outstanding and enriching and moving event. What a gift!!!!!

And afterwards, it was back to the house, and to much-needed rest.

TO OCTOBER 30th

Nadine entered a flute competition; we moved; and Nadine actually got a NON-DELAYED chemo cycle. Among other things.

FLUTE COMPETITION

Nadine did much practicing for a flute competition on October 30th, although she made a somewhat late decision to enter it. I could see she really wanted to win this one. She was going to play the Dutilleux Sonatine, a long, difficult French piece that was fluttery at times and flashy at times. It took a while to find an accompanist -- it was more than I was up to in that time-frame, Irina was way too busy; Joe Werner, the wonderful RPO pianist, had an RPO rehearsal; two others had had babies; others were unknowns. Finally Irina agreed to accompany Nadine. Nadine had made marked improvements, and sounding really nice.

BEAUTIFUL DRESS

Thursday October 29th: Nadine got a beautiful dress -- actually, two beautiful dresses. Her flute competition was coming up the very next day. We went to Burlington Coat Factory (recommended by her teacher Sophia). originally for something neat and less dressy. But there was nothing appropriate, so she and I each picked out a "fancier" dress for her, and both looked gorgeous! Both were sleeveless -- I picked a warm silky brown with a smooth line and twinkly clear mesh over it; she chose one more dressy, was silky deep-plum-purple with a very sparkly belt and a lower neckline.

I stared at her with the dresses on -- how magnificent and lovely she looked -- it was a joy to see her. I hope she realized how beautiful she looked, so willowy, graceful, and stunning.

After she tired out, we left -- with both dresses. She deserved them.

COMPETITION DAY

Nadine had dark-dark circles under her eyes -- this happens often. And she was pale. I called Lauren Spiker at TLC, to ask if anyone knew about make-up, and she recommended aa make-up specialist who volunteered to help Nadine (TLC has so many abundant resources), but I couldn't reach the woman. Here it was competition day, and I was running off to CVS to buy a bundle of make-up -- they allow returns on used make-up. I admit that Nadine wasn't the only to try it.

Amazingly, shortly before we left the house to go to the competition, the dark circles under Nadine's eyes spontanteously disappeared so she didn't need the make-up. All right!!!

At the competition site, Nadine put on that gorgeous dress, "warmed up" downstairs with irina, and played beautifully. After that, we went home. The winner would get a phone call.

No phone call. She didn't "win", at least not officially. But she really did win. So much learning, so much growth.

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OTHER STUFF Tuesday October 20th

Nadine had the first post-Journeys get-together with her TLC friends. I went to the Golden Links folksong swap again and actually sang at it. It was the first time I'd sung one of my own songs in public -- I shared a funny one called Tap Tap, about pregnancy. It felt really nice, even though my voice felt shot.

THEORY FOR ME -- YUMM

Wednesday October 21st -- Theory class for me with Margaret Henry. I know how important it is that I stay in touch with the "me-ness" in the face of lovingly caring for Nadine. To me, music is so important, including classical music and theory. I truly want to be a composer and a writer, and to develop this more and more fully over the years. Having had years of music theory "way back when", I've cherished the opportunity to go back and do it again -- there is so much new since I studied it, not to mention what I only "think" is new (having forgotten some). I still feel held back in my own composing by now knowing much about orchestration, and that keeps me from writing for the instruments that :I envision. Sometimes I have a sound "picture" and am not sure what instruments would make that sound,. I's a struggle.

CRAFTS PARTY FOR NADINE

Nadine had a wonderful craft-making session with her friends Louisa, Sarah and Mia from the youth symphony orchestra and theory class. When I got to the place, they were gleefully seated at a table doing yarn stuff -- it was nice to see them get together for things other than music. No sign of chemo wear-and-tear that afternoon. Just friendship and enjoyment. Makes me smile to think of it.

Friday October 23rd:

We were going to move into the new house on Sunday October 25th, but surprise, Hassler announced he was sick -- I made a quick decision to move out early, much as it would have been nice to have a final dinner (as planned) and an orderly packing-up. Instead, :I installed Nadine in our room and slammed our things into the car, and we left. As there were many loads to "slam", it still took a while. We would have been back at MacDonald House, but Diana and Brian invited us to stay, which was a delightful idea -- II'd been looking forward to a nice visit with them and their graciousness facilitated this. We watched movies together -- actually, the "kids" watched an animation flick while and the "grown-ups" watched a romantic comedy. I had a restful visit and evening, and Nadine stayed up late talking with Rafi. I said something like "early bedtime" to her, but it was a lost cause (I knew this in advance) and I knew that the benefit of her fun outweighed any downside of lateness.

Saturday October 24th:

A peaceful day, period.

MOVING AGAIN Sunday October 25th: We moved to the new house. The first one we'd been alone in. I had loved staying with friends. Being alone, I could sing in the kitchen without feeling weird (or feeling someone was watching me being weird). The house, though, felt strange and foreign. I loved the neighborhood, close to everything and yet not like "inner city". I thought of placing some of our things in strategic places; maybe that would help it look familiar. Surprisingly, it took less effort than I'd thought -- I stood a large drawing Rafi did of Nadine, and the oil painting of a dancer that Nadine's friend Erica created for her, on the living room mantle, and neatly stacked games on a low cabinet. I put some our things in the kitchen. Upstairs, Nadine hung some of her jewelry on the bedpost. It didn't take that much doing. I was happy to cook our first dinner. We were between Abundance Co-Op and Wegman's, and that was nice. We each had our own room. I set up the electronic piano in the study -- it fit nicely, and I could practice.

Monday October 26--27th: SETTLING IN; ACOUSTICS PERFECT FOR MUSIC We were at the house settling in. Nadine was feeling really well around then, which was a gift.

Nadine noticed that the acoustics for flute playing in the house were absolutely wonderful -- the night ceilings may have had something to do with it. She loved practicing and hearing her flute. As she had the flute fair competition that Friday, it was a perfect time for it. She sounded excellent and vibrant.

Nadine and I played some "tunes" together at some point, and this was a complete joy.

COUNTS UP, CHEMO ON TIME. YIPPEEEEE! Wednesday October 28th: Nadine's blood counts were WONDERFUL, and she got chemo on time!!! After 2 seriously delayed cycles, she had a NormaThree Week Cycle, and in went the usual meds. This was a gift of gifts, yucky as the side effects would be..

Catching Up September-October

A long catch-up for September and October -- more to come.

I'm not sure why I stopped posting. I was worried about boring my friends with the repeating "ups" and "downs", for me as well as Nadine. I know the swings will go on a long time, even the breakthroughs we've had. Also, as this is "me" writing, my own story inevitably gets tangled up in this -- I realize this will just happen, and there are some "ouches" there. This may sound silly, but through all these ups and downs there seems to be some intangible progression that I can't verbalize.

SEPTEMBER and OCTOBER -- Ups-and-downs, music, clinics, people in our lives, music, moving again, what-can-I-say. Here's the first long catch-up.

PAINT
The Yellow Paint is where I left off in September. The ugly-looking anti-biotic wasn't as obnoxious as anticipated, even if it is gooey and paint-like. After the uncleanable yellow-encrusted syringe was ousted, Nadine tried a two-ounce plastic scoop accompanied by "Green Machine" vegetable/micro-nutrient juice or yogurt. Later she devised a system of several spoons and glass jars, sopped up with paper towels afterwards. Finally, she picked the direct route, and started licking the "paint" out of a measuring spoon, much easier. Now she's thinking of taking it with applesauce.

WOUND HEALED FINALLY: (Okay, this is current late December -- the rest of this post is Sept-October). The bandage is off, after 5 months! This was from the removal of Nadine's "port" late last June. The complicated cleaning-maintainance process (done by me) gave way to progressively less complicated stuff, it started to "fill in" (sometimes with me needing to consult the wound-care lady to figure out if I was seeing normal healing or trouble); it shrank, and a few days ago the bandage finally came off. This was the wound caused by the removal of her defective port back in July!

SEPTEMBER: NADINE WEAK A LOT

Just the way it was. Not always, but way too much.

FRIENDS LEAVING FOR COLLEGE
September 4th: Nadine's friend Sylvia was leaving for college. The Night Before, Nadine helped Sylvia pack and organize, which was gratifying. It matters to Nadine, like to me, to be able to help other people out, even though we appreciate that people want to help us too. Even though Nadine felt queasy, she could flop down in the middle of the living room amidst boxes and packages, help decorate shoe boxes for in-room storage; later and provide help and camaradie in last-minute packing. And she could do her Nadine routine of sneaking in sweet notes amidst the clothing and papers into Sylvia's suitcases and boxes. On Leaving Day, we both "saw" Sylvia off on the tandem bicycle, on which she and her brother rode all the way to college in Canada.

For Nadine -- her buddies Sylvia and Claire will always be her buddies, but they won't be a short car-ride away everyday. Friends mean so much, and these girls were so nearby, so easy to "drop in" on and hug and giggle. She still intensely misses both Claire and Sylvia. The girls had had so many fun times, so many escapades, sharings, homegrown biology labs, lunches in French, birthdays. Often Betty and Sue and i would be together as well.

WHERE WE WERE SEPT-OCT

We still hadn't found a suitable place available by Sept. 10th, although we looked hard. Just when I thought we'd go back to the Southern Tier and commute, the wonderful Thurston family, whom we'd met through the youth orchestra, invited us to stay with them while waiting for a place. It was a gift to be there, and to get to know all of them.

A "ROUND" TABLE (MUSIC STYLE) AND FOOD

September ? -- At the dinner table, the Thurstons taught us a humorous round about "Smetana Dvorjak and Janecek's "curious rhythms",, complete with rhythms and hand motions. Nadine picked it up quickly. We've sung it a lot since then. George is an amazing chef, his specialties including lasagna, Indian style curies, quiche, etc. This "kids" made excellent fruit cobbler and cookies.

I got my chance to cook too, and as my recipes are new to them, they went well. I enjoyed making a big potato puff, Asian delight, and sweet potato pies -- it took a while as I didn't know where things were.

FRENCH AND THE COUCH

Often Nadine "held court" on the living room couch. When she was feeling really weak, or even not, she'd be on the couch with me. I did some French lessons with her, mostly conversational, which was fun and productive. She'd knit or do jewelry at the same time. Academics haven't been our bright star over the last few months, but we did work on French review for Nadine, using both the book she used and the book Kate used at Swarthmore (thank you Kate), plus tidbits from my own knowledge. She progressed really, really quickly, remembering what she'd learned and going on. I would have been happy to share it with Margaret and Hassler too. Often Hassler would be doing his own studying in the living room along with us.

A WALK
The place is south of Pittsford, almost-country. I remember puffy white clouds set against luminescent blue sky, and although the place was "developed" I could visualize farmfield where there now were green lawns. I took long walks, especially at night, around the long circular roadway, sometimes not noticing I passed the house and doing a double loop back and forth. The sky colors were gorgeous near sunset, with luminescent tones of blue in the sky. Once it got cold, I'd walk out on a starry night enjoying the clarity.

CHAIN MAILLE AND KNITTING AT CLINIC AND ON COUCH

Nadine did a lot of jewelry-making and knitting on that couch including chain maille and seed beads. She also knits beautifully patterned textured scarves. I don't know how she manages to choose color combinations that might look awful to me at first, until she makes them look gorgeous, like the long pink and charcoal scarf, where my "Uggh" turned into "Ahhh". I grimaced at her electric blue chenille until she paired it with black. She took a long tour of Michael's Crafts for yarn with me, carefully selecting black, electric-blue chenille on close-out, brown-ish textured stuff, pink, charcoal, greenish-textured, plus pretty wooden knitting needles.

Nadine invited me to knit with her, which I happily accepted. She had to refresh my memory of how to get the yarn started on the needles. Wasn't I the one who originally taught her to knit?

Nadine often takes craft-making supplies to the clinic, and knits or chain-mailles at during the long chemo or transfusion waits. Nurses and others have wandered in, and people have asked about getting some stuff and placed custom orders with her -- at least one of the staff people said she should add her beautiful knitted scarves to her "line". Janet, the gracious and well-dressed secretary who "womans" the entrance to the clinic, has already ordered and received two pairs of earrings from Nadine.

SEPTEMBER 13th 2009

Nadine played at the Irish Festival (September 13th) at Eastman Park in the north part of Rochester. I didn't think she was going to do it -- she had been feeling pretty bad pretty consistently over the week. But amazingly she perked up and said she was into it -- she came to the "dress rehearsal". I had loved doing it too -- accompanying and enhancing kids (and older musicians too) was and is a blast. It's what I want to keep doing, and doing, and doing. Nadine did a solo piece, as did other soloists. There were about 20 young musicians. I was SO pleased that she was up for it.

In the car, Nadine announced that she suddenly felt happy for no reason at all. This seemed like a nice way to be.

The festival was huge, and we went indoors and "set up" on the stage. All went very well.. Afterwards, Nadine wanted to hang out at the festival -- we sat together in the dirt and watched some spectacular young Irish solo dancers with fancy footwork, curl-curly bouncy-curled hair (or wigs), and elaborate themed costumes. Nadine mentioned that she hadn't been to a festival all summer (we usually go to lots), and she prowled the clothing and crafts section, looking at and trying on skirts. Nadine got a little hand-made silver ring at one booth; I admired one but didn't get it. We sampled the Irish food, with Nadine relishing Irish style potatoes and meat. AFter we left, she encouraged me to go back and get the ring I'd liked, and I did, so we not each have a silver ring to mark a lovely festival day.

SEPTEMBER 14th:

We moved out of the Kanack School -- we'd tried to make it by September 10th but it didn't happen. I was determined to do it all by myself, even though I'd been offered help, but the stuff... the stuff....the stuff...... I was appalled at how much had accumulated over a month. Although I intended to do it all alone and valiantly refused assistance, Alice and Sally ended up helping-out. I was embarrassed, but they were so gracious about it all. They treated my predicament as completely and utterly normal.

Our first night with the Thurstons, we arrived late at night. I confidently pulled into the wrong driveway - someone was outside, and I asked if he was George, which of course he wasn't. Well, at least he didn't call the cops. Then we got to the right house and were soundly welcomed, as late as we were.

WERE WE WERE

Nadine and I shared a room, with side-by-side beds; there was lots of space in the house, including the basement, to do things separately. I think it worked out nicely.

We knew Sally from when she used to visit us in the hospital; she works there as a biostatistician; she also contradances; her husband George is a physicist; both "kids", Hassler (16) and Margaret (13) are delightful. I liked the from-intellectual-to-fanciful conversations at the table, peppered with lots of humor. It's nice exercising the math-logic part of my brain for a change. Hassler is homeschooled and is doing an impressive amount of coursework. Nadine has had excellent times with Hassler and Margaret, musical and otherwise. Since Hassler and Margaret also "fiddle", we all had fun with that


TUESDAY SEPTEMBER 15th

Nadine was very animated, talkative and lively. Her energy level seemed unusually high. Jessie the nurse came and took her blood levels; she said she thought Nadine's counts must be high because she was the opposite of tired. Surprise -- Nadine's counts were very, very low! They were so low that she had to get a transfusion the next day. This didn't make much sense.

After Nadine lost much sleep, It started to look like she was having a reaction to some of her medication. Although she was doing nice stuff like flute practice and writing, she wasn't resting and she wasn't sleeping. She was staying up way too late, even for her normal night-owlishness. What had at first looked like a welcome perking-up was getting unsustainable, even though she was delightful. On Tuesday night she stayed up all night -- I'd get up at night and she'd be up facing me.

SEPTEMBER 16th

Clinic day. Nadine got her two transfusions. I conferred privately with Eric the social worker about how to constructively handle occasional difficulties, differences and disagreements with Nadine's attending doctor or other staff members. With this serious illness, the stakes are very, very high. Often I've felt it necessary to "stand up", and I'm at peace with doing so, uncomfortable as it may be. Eric is a supportive person to talk this over with, including when I'm not sure if an issue is important enough to me to bring it up. I feel totally supported, and he also offers to communicate with the doctors, nurses, or anyone else if I would like him to, which I have happily accepted at times.

I had a difference with our doctor around what issues were "major" enough to get a second medical opinion -- I was very upset. Eventually I was able to talk it over with her; even though we didn't completely agree, I felt empowered to make the decision after the doc explained her view. Talking with Eric helped. Strangely enough, it hasn't come up since, but I don't feel as worried.

MORE AT CLINIC

Dr. Bruckner checked Nadine and told me Nadine's over-energeticness/lack of sleep problem was an issue. A medical issue. Thankfully, no re-hospitalization. And it's improved a lot.

I had my panic away from Nadine. Chemo messes up so much. This whole thing is monstrous, just monstrous. That horrible disease. Those horrible chemicals in my gorgeous girl's body. I'm still appalled.

WEDNESDAY EVENING SEPTEMBER 16th

Nadine wasn't doing well, and we spent time in the basement to avoid disturbing anyone else in the house. I had trouble resting as well. I: went out to the car to get something, and forgot to turn off the security alert -- fortunately someone upstairs heard the whining of the buzzer before the system would automatically dial the police i was pretty embarrassed, and blurted out how upset I was about Nadine. I suppose it was just as well they knew how I felt.

Amazingly, shortly after that one of the Thurstons complimented me for having so much "together" with all the things I had to deal with. Me, well organized?


THURSDAY SEPT 17th

Nadine and I returned to the Southern Tier and got some peace and quiet. On the way down, she admired the beautiful colors in the landscape. Back up on "our" hill, we could walk outside and just admire the surroundings. I also got my first haircut since May, visiting my favorite hairdresser, who works in Olean -- it might sound silly, but I missed having orderly hair, perhaps especially with the disorder and dismay I had experienced over the months. I got it cut nice and short, which was a pleasure, a literal weight off me. I enjoyed running into people I knew in Olean.

Nadine came with me -- she had the camera with her and did much photography, which she loves. I was happy to see her getting back into it. She also got the video camera out, did some composing, and made gifts for some friends.

SEPTEMBER 29th

We returned from the Southern Tier. Nadine was doing really nicely, getting rest, it felt nice.

BACK TO RONALD MacDONALD HOUSE
We were returning from the Southern Tier and the Thurstons informed us that someone in their family was sick and it would be best for us not to return there. SO -- I called Ronald MacDonald House, the wonderful place that had hosted us during Nadine's hospitalization, and they had a place for us. Once a resident, always a member of their commuity, and always welcome back. The parking sticker had never been taken away. They had a room available and it was "home" again! This time the room was on the ground floor and had a guest book where we could write chronicles -- I recognized one of the names from a previous stay there, and enjoyed reading the rest; of course I contributed. There were more wonderful meals, the wonderful kitchen where I could cook and be with the other residents, the piano which I played again. There was the completed, well-nurtured rest for us both. The wonderful people who worked there.

And there was the COOKIE JAR! That fabulous cookie jar that had become my symbol of comfort during the time of Nadine's hospitalization. A cookie in the morning and a cookie at night. The tradition continued.

Nadine had a flute lesson with Sophia Gibbs Kim again that day as well -- she was going to enter the Rochester Flute Association flute competition after all, with the Dutilleux Sonatine.

After that, Jessie the Nurse came to the House around 5PM for Nadine's blood-drawing, dressing change, and check-up. Nadine was hoping for medical paraphernalia for her Journeys performance. The two of them went out to Jessie's small SUV, and looked like a pair of dumpster-divers as they dived head-first into the back of the truck; Nadine "scored" big. Blood-drawing tubes, (needle-less) syringes, gauze, stuff I couldn't identify.

NADINE and the DOUBLE FLUTE CONCERTO for the CONCERTO COMPETITION DEC 17th

Nadine had her first rehearsal with her buddy Victor Wang for the Rochester Philharmonic Youth Orchestra Concerto Competition, right at Ronald MacDonald House!! Victor arrived with his mom, who is a wonderful person too. He is another wonderful flutist who studies in the same "studio" (same teacher) as Nadine. They have competed many times, and this time they decided to enter the Concerto Competition as a pair; they chose the Cimarosa Double Flute Concerto, a classical composition with soaring harmonies and beautiful solos.

With all the health-related delays, it was wonderful that they were able to do this.

The two of them "set up" by the piano in the main gathering area, with the beautiful vaulted ceiling, wonderful windows/glass doors, etc. -- it was viewable from the second floor lounge which was open to it and accessible by stairs. They socialized and then sight-read the piece. It was an unwritten agreement that they'd start out by sightreading. It was gorgeous! Meanwhile I gave Victor's mom a tour of the wonderful house, and sat in a downstairs lounge and visited. Afterwards we stood on the second floor lounge and peeked over the railing to have a bird-eye "mezzanine" type view of the event. I cautiously stuck a camera over and took photos and a video.

It was so nice to see Nadine making music with a friend.

WEDNESDAY SEPTEMBER 30th -- DELAYED CHEMO and BONE MARROW BIOPSY

Nadine got a bone marrow biopsy to check to see if she was still in remission. If she was out of remission, it would be very, very serious. Everyone told me they didn't expect the biopsy to show anything wrong, but obviously the chance of a disaster wasn't zero or they wouldn't have done the biopsy.

The biopsy was done because her "counts" still weren't high enough for the "big" chemo after a week's delay, following the 3-week delay in her last cycle.

Margaret, who did the job, remarked that Nadine has strong bones. I've seen her digging in there trying to get a specimen. She uses something that looks like it might be a tiny saw. I watched the procedure as usual, standing in the room. I really like one of the anesthesiolists, Elise Vander Haght (a Dutch man), who also has been a flutist.

Dr. Andrea Hinkle, the statuesque and lovely dark-haired doctor who cared for Nadine in her brief stay in the ICU in July, also presided over one of the procedures. I'm grateful for her having successfully handled Nadine's stay in the ICU.

BIOPSY RESULT SHOWS NO PROBLEM (EXCELLENT)

Nadine's biopsy results came back later than I'd hoped, but with the best news -- they showed no evidence that Nadine was out of remission!

POOPY BONE MARROW, DELAYED CHEMO, AND REDUCED CHEMO DOSES

That's Margaret's term for unexplained delays in counts rebounding enough for the next chemo round. It sort of says it -- the bone marrow gets tired from repeatedly pumping out cells after the chemo repeatedly knocks them down. Perha[s it's more prevalent during the later parts of the "consolidation" phase of chemo that Nadine is in, which ideally lasts about 6 months after her remission started, in this case late June.

Delayed chemo means delayed treatment of cancer, and this is awful to think about. I've worried that this could mean she wouldn't get enough, or frequent enough, treatment to eradicate the cancer. The doc has reassured me that delays happen a lot (perhaps even the rule). She is expected to get her FULL dose of doxorubicin etc., only spread out over a longer period of time.

My impulse, of course, was to ask the doc why she didn't just "get on with" the chemo, even if her blood counts are los. The answer is that it's too dangerous.

Even if they're right (which they probably are) it still makes me achingly angry.

MERCAPTOPURINE REDUCTIONS, DOCTOR MIX-UPS AND WOES

Nadine takes 6-mercaptopurine pills orally during the first 14 days of each chemo cycle. She stops them early if her ANC reading is too low to keep it up. If her counts are way-way down too many cycles, or if there are too many delayed cycles, the daily dose of 6-mercaptopurine can be reduced as well. 6-mercaptopurine is not one of the "super-aggressive" cell-killers like doxorubicin and vincristine. It interferes with purine, one of the nucleic acids in DNA, presumably hitting leukemia cell harder than other cells because leukemia cells reproduce more frequently.

I recently read that although doxorubicin is not usually damaging to the liver, the combined use of 6-mercaptopurine with doxorubicin is a threat.

I had an unpleasant mix-up with the doctors in August the first time her mercaptopurine was supposed to be stopped. In the hospital, Dr. Asselin (the senior oncologist on duty), told me that no matter how low Nadine's blood counts went, the dose should not be reduced or dropped. after Nadine left the hospital, her labs showed a very low ANC and Margaret said to stop the mercaptopurine. After I hung up the phone, I thought, Oh no, she must have gotten it wrong, as I remembered Dr. Asselin's emphatic statement. Of course, by the time I called back, the clinic was closed. It took an agonizing evening to attempt to straighten it out, including an honest miscommunication with the on-call doctor that ended with Nadine getting the 6-mercaptopurine in error. A long and uncomfortable discussion with Dr. Bruckner and Margaret ensued the next day -- they were pretty unhappy and so was I. I felt bad; so did the others involved in this mess.

If communication is a key -- the keys were lost.

I hadn't known (and no one had thought to mention to me) that the parameters for stopping mercaptopurine are different during the outpatient (or consolidation) phase than in the hospital (or induction) phase. When Nadine was hospitalized, she was undergoing a more intensive phase than she had as an outpatient -- and more dangerous things were happening there. In other words, Margaret was right, although she didn't realize I knew the hospital protocol and thought it applied as an outpatient. It would also have helped if I'd noticed the discrepancy between Dr. Asselin's and Margaret's statements earlier. A mess.

OCTOBER 6th COUNTS STILL LOW

Jessie drew Nadine's blood test -- they STILL weren't high enough after 5 weeks minus 1 day. Oh dear. This was supposed to be the BIG-BIG Chemo, the one with the injections into the spinal fluid as well as the usual "stuff". Two cycles delayed in a row.

Kristin the physical therapist was also coming often -- some of the exercises used stretchy straps. They looked helpful, and Nadine seemed to think they were helpful, but she didn't do them often at home. I guess Nadine walked up stairs, and danced sometimes.

OCTOBER 7th: SURPRISE COUNTS UP -- RETURN of the BIG CHEMO (YAY!)!

Nadine's counts stormed up "at the last minute" -- her blood was re-tested on Wednesday morning and there it was.

So -- She got the Big-Big Chemo. The one that's normally every 9 weeks. An icky procedure for sure, anesthesia, the injection into the spinal fluid, the asparaginase, the doxorubicin and vincristine and dex-(something to protect the heart), the works. And the asparaginase too. Plus possibly some Zophram for nausea "just in case".

During the procedures Nadine looked and sounded like she was having so much fun. Oohs and ahhs. It's fun to watch her.

Afterwards -- hunger, immediate hunger. Enough to send Mom scurrying.

She did feel miserable after the chemo. I think she'd felt fine first, just fine, and then, misery.

I had to miss my theory class, she felt so bad. I felt cranky and upset because I really, really, had been enjoying my theory class with Margaret Henry -- it meant a lot for me to be "caught up" again, and I found it so helpful and useful to me. I even drove over to Eastman, just to see if she'd feel better, but she didn't. But Nadine said she really wanted me to stay with her and just take her home.

Of course Nadine deserved it, and of course I took her home. It was a loss, though.

THURSDAY OCTOBER 8th-- NADINE SICK, STILL PLAYS HALF A DANCE WITH TIM AND JANE;

Erek was arriving that night. Nadine was feeling miserable for most of the day -- really bad. Lying on the couch, just miserable. That night, however, Tim Ball and Jane Knoeck were performing for the Rochester dance, and Nadine was invited. She had performed several times with them -- Tim is an amazing fiddler, a recent Ithaca College graduate and the two have a vast and wonderful musical rapport. Jane is a wonderful keyboardist, accordionist and all-around marvelous person, who also takes a tremendous interest in Nadine.

She was so miserable, and she also was so insistent on going to the dance with her flute. I finally decided that it would be more stressful or her to stress about not being at the event than to bring her there, so off we drove. As she sat, sick, beside me, I was thinking "why am I doing this" as I drove into the night.

We arrived at the dance and there were Tim and Jane on stage, there was lovely Sarah Van Norstrand the caller, and Nadine amazingly perked up and played beautifully with both of them, even though she looked dreadful, pale and drawn. It was a strange discrepancy of looks and sound, made perhaps more eerie by the small pink "spit dish" set right next to her, and judiciously used, on the stage. I in turn loved watching them and dancing to the wonderful music, which I did with relish. I sometimes feel I don't get asked to dance enough -- this time I was getting asked a lot and thoroughly loved it.

After halftime, I still felt Nadine should stop, just to make sure she stayed okay, and she acted appreciative of my doing that, even though I had mixed feelings about my decision.

GETTING EREK; DECISIONS

I had to get Erek at the airport at around 10:30 PM. If Nadine had been in better shape I probably would have left Nadine there as our friend Ron had offered to take her home. I thought I should have told Erek the day before that I might be late; then I could have stayed with her. At any rate, Nadine said she thought she might have been ready to collapse anyway. It turned out the plane was late (I'd called earlier and it was supposed to be on time). So we sat at the cell phone lot for about an hour waiting and trying to rest up. We could have stayed at the dance.

So many decisions I have to make, big and small; so often I don't know if the decision is right, either immediately or later; sometimes it's just hard to think straight. I know I know, hindsight is 20:20, but I'd like to do at least a little better at getting it right "on the fly".

We finally collected Erek, and brought him home. What a treat to have him back!

OCTOBER 9th -- NADINE AND BUDDIES COOK

I had planned on cooking dinner after doing "exciting" (not!) errands at Target and worse.

When I arrived in the kitchen, Erek, Hassler, Margaret, and Nadine were all in there cooking dinner, having a fabulous time. They were so much fun to watch. I was given no indication whatsoever that I was welcome anywhere near there, so I stayed out. The prepared a fablous meal for us all. Sally also commented on seeing all of them in the kitchen together. They looked so gleeful, and Nadine looked so perked up. Camaraderie certainly perks up Nadine, even though she was generally at low energy around then.

EREK'S VISIT

Erek visited us at the Thurston household from Thursday October 8th through Tuesday October 13th. Usually he is here Thursday through Monday, but we got an extra day courtesy of Columbus Day. He fit right in with the family, chatting with Hassler some, and also of course visitng us. I was sorry George was in Europe giving a presentation, as I was sure he and Erek would enjoy each other. I took a long walk with him on the long road-circle. I remember Erek and Nadine visiting together, Erek dragging Nadine out for a walk (he does better than I do), Erek spending much time cuddled with her on the couch (she needed a lot of couch time) -- often Nadine would be leaning on him or next to him for long periods of time. He was so "there" for her. I made sure to give them their space. She'd had that big-big-chemo.

SUNDAY OCTOBER 11TH --
Erek and I had three hours free while Nadine was at her orchestra rehearsal. We drove to the South Wedge with a mutual desire for hamburgers one would think hamburgers on a Rochester Sunday after are easy to come by by so we settled for "subs" -- mine was awful, but we still sat together and had fun.

Then -- off the beach! We drove up to a park-ish area in Seabreeze right against the lake. It was cold and windy, but okay by us --we strode off down the very windy rock jetty right out into the lake, standing in the wind with the choppy water splashing against rock. Then we took a long and satisfying walk along the sandy beach right by the water. Walking back there was a beautiful flock of seagulls soft-reflected against the sky as they walked or stood on the glossy reflective water-coated surface of the sand as the waves brought in water and then pulled it back. I needed this.

MONDAY OCTOBER 12th-- A NIGHT OUT AT THE LITTLE THEATER CAFE

On Oct 23th Nadine, Erek, Rafi, me, and Diana went to the Little Theater Cafe. Nadine was pleasantly animated. We saw a nice rock band, got tomato bisque and chili, and played some nice card games on the table. Erek, Nadine and I got there first and had a nice card game. After Diana and Rafi arrived, Rafi joined Erek and Nadine and Diana and I took a neighboring table. Diana had to leave; I offered to take Rafi home and joined them all for a while. After I took Rafi home, I returned to the cafe in time to play a "friendly game of Hearts" with all its conniving and gleefully dumping the queen of spades on one's hapless comrades. It was so much fun to play it again together. The game was "popularized" with our family by Barry when Erek was maybe 3 years old, and has been popular since.

Nadine decided the cafe might be a nice place to go with just me too. I'd like to do it.

TUESDAY OCTOBER 13th

It was the day Erek left. Erek and I dropped off Nadine at the Teens Living With Cancer meeting that night, which was a rehearsal for the Journeys program, which I plan to write about separately.

I picked up the flyers from Ralph and Judy Hunt for the wonderful benefit that Crowfoot, a special musical group, was doing for Nadine on her birthday at Harmony House. Ralph and Judy had been amazing in offering to do all of the benefit organizing for Nadine. This included getting the venue, publicizing the event, getting the sound stuff, the works. They run the Heartland folk concert series, bringing in amazing folk/traditional/creative artists. They invited me to stay for dinner, but there was something else I was concerned about -- I'm sorry now that I didn't stay. They're wonderful people who always invite someone to dinner. Ralph sent me back with a wonderful loaf of his home-baked bread.

Heartland is HEARTland. in its glory.

I went to my first Golden Links group singing/song swap meeting that night-- Ralph had suggested it that very night. Although at first, after getting lost on the way, I walked in and thought, oh boy, this will be boring, I sat down on a bench near Ralph and just enjoyed the listening. Some of the tunes were so moving, and I was treated to a version of Autumn Leaves, a favorite "standard" and one of my super-favorites, with a wonderful guitar accompaniment, sung and played by a gentle-looking bearded man who also was doing drawing during the evening. The rendition could make me cry (I think I did cry, in fact). And people sang Somos El Barco/We Are The Boat, another gnetle favorite with which I could sing along. I stayed until it was time to get Nadine before I quietly left. It was a little "just-for-me" time that I'm glad to have had.

FOOD FOOD FOOD

Nadine gets suddenly hungry. She wants to eat NOW and if she doesn't eat NOW, then she can lose her appetite and not eat at all! Not eating is dangerous as she is still so thin that it feels like just a little thinner might hospitalize her -- and indeed it might.

She still goes through phases in what she loves. Then, she was going through a desire for Indian food. I took her to the Indian grocery where you can get a two-for-one at their wonderful lunch buffet if you buy $25 worth of food at their grocery store, not hard to do as it contains both staples and exotic products (at least to us). Nadine wanted the mango juice and lots of boxed heat-up meals that could be used either at the hospital or at home if she was seriously, urgently hungry, which happens a lot. She was lively enough scouring the shelves.

We went to the lunch buffet, arranging to arrive right as it opened so Nadine wouldn't have to worry about others having contaminated the food. It isn't very crowded anyway, but we made it first and there was the usual excellent buffet of very healthy out food. I love sitting with her and enjoying her company during meals. Nadine selected some wonderful choices :(I pigged out), and very shortly had eaten enough -- she can just have "so much" at a time. Although usually it's not allowed to take food from the buffet, Adam the waiter encouraged her to choose food and take it home, knowing that she couldn't eat much at a sitting and that it might be very helpful for her later.

ANOTHER WALK

October ? - Nadine was resting. I took a wonderful long walk with 13-year-old Margaret Thurston, up and across East Street and into a group of houses, and trees sporting wonderfully colored leaves. I like to stop frequently and admire the view, and take pictures. On the way home, we arrived at a pond (near their house) that I didn't know was there, and I spotted a great blue heron very very still, looking like a big log from the distance. I tried not to slip on the muddy path. We were gone about 2 hours, and weren't missed.

WEDNESDAY OCT 14th

Nadine got her weekly asparaginase injection into her leg at the clinic, and the usual hour wait to make sure the leg didn't react. She had been really cold lately; she found two of three gorgeous hand-knit hats in the hat bin which , unlike many, definitely weren't sized for a 12-year-old. She happily modeled and selected 3 nice ones.

That night she got "mega-spits", the worst I've seen her. It got way out of hand. Dr. Bruckner had discountued the scopalamine patches about 3 weeks earlier, and the spit hadn't returned. However, it came back with a vengeance.

That night she couldn't get to sleep because of the copious spit; she tossed and stayed in bed about two hours, then got up. She tried spitting into a towel in bed, and even holding the towel between her teeth, with no relief. At 3AM I sent off an email to Dr. Bruckner about it urging her to consider reinstating the skin patch to get rid of the spit. After that I tried to rest in bed, I didn't get much; I still don't know if she slept.

THURSDAY OCT 15th: I WORK ON USING GENTLE PERSUASION AND DR. CHANGES MEDICAL DECISION.-- SUCCESS!

Nadine was miserable again on Thurs Oct 15th, tossing and crying on the couch, the spit was so bad she couldnt' play her flute, and she was exhausted and miserable and unable to do her music.

I emailed the doc to ask her to reinstate the transderm patch that had worked so well before; She wrote back that she opposed it because she was worried about extra meds. I wrote back that I was uncomfortable with that decision, as Nadine's misery was impacting her so seriously, and this too could affect not only her quality of life (important enough) but also her physical health I also did some research and shared it, and went over a "timeline" to indicate that when she'd used the med before, there was evidence of no ill effect. The doc changed her mind and wrote the prescription.

Nadine used the patch and, voila, the spit disappeared! And there were no noticeable ill effects. Victory!

Nadine did start a policy that when it's time to change the patch (after 3 days), she leaves it off until or unless the spit returns. She's had substantial periods when she doesn't need to use it, but it's there when she does.

OCT 15th: NADINE MISSES PLAYING A DANCE

The same day, Nadine was feeling so sick that even she said she wasn't going to play the Rochester dance with Tunescape. She must have felt really terrible. Even I tried to persuade her to go, but she was adamant, and she had my respect. She lay curled up and dejected on the couch.

The kids we're staying with (and mom too) could see the sadness and frustration of it all. I may have mentioned to the kids that this is a "homeschooling" lesson in itself, liviong with a sick friend, seeing the awful and the okay and even the humorous, just learning what that world is like. They all were 100% wonderful. One night I shared with Sally how frustrating this all was.

As Nadine wasn't going to the dance, and Bob Fabinski offered to bring the flyers Ralph and Judy had made for Nadine's benefit concert; I went and dropped them off at his house in Brighton. I knew Bob as a bouncy dancer who generally wears tie-dyes and is VERY welcoming to all including newcomers, whom he bounds up to, welcomes, and asks to dance. He and his wife have two small children. When I arrived, I learned that he is just as welcoming to visitors, or at least to my visit. AND that he's an excellent cook. He'd prepared a plate of delicious food including an amazing pumpkin soup and some serious cookery that might have been Indian inspired, and sat me down at the table -- he'd eaten with the kids-- and joined me for nice conversation.

I returned with a pleasantly full tummy and upbeat attitude, which was excellent to bring to the evening of caring for Nadine.

ESCAPE TO A HOMESCHOOLERS MEETING

That week, I escaped to the Kanack School for the RAHA homeschoolers' meeting. The connections mean a huge amount ot me. I need to keep my contact with my "regular" world which includes homeschooling and of music, where topics range to normal things, where I remember that cancer-care isn't the only focus of my life.

I'm aware of a "life swing" of communities after Nadine was diagnosed -- first staying within my "normal communities" and feeling I had so much support there that I didn't need to become close to the "illness" or "teens-with-cancer" communities. Then, after Nadine left the hospital, I realized I needed the illness-support community as well, and being with them plus day=to-day caring for Nadine were taking over so much that I'd backed off from my "home" community. Now the two were becoming more balanced in my life -- I needed both, and wanted to contribute to both, even if realistically there would be some swings in how much I related to one or the other.

ws a get-to-know-each-other session, lots of lovely ladies, a few guys, kids of all ages. I sat next to Diana, and also ran into Marcia Weinert, another mom of older kids, who is a theater director and producer to whom I'd shown my draft of the operetta I was working on. I miss doing that and still want to complete it. We talked about hospital advocacy -- she has a friend who she advocated for. Alice
Kanack was there, looking worn and drawn -- she was coughing and looked sick. I: wanted to sit near her but pulled away as I have to be careful too.

I went up to my "old" bedroom there to look for glamourous stuff like missing income-tax papers, which I didn't find.

I feel like my things and routines have been scattered royally in this new regimen of sick-care and constant moving around from residence to residence and place to place. I would love to be settled in our own long-term place, even while I'm immensely and intensely grateful for all the hospitality we have received. I long for my own room that I can decorate, for Nadine to have her own room that she can decorate and paint the walls a wild color in, for the photographs on the refrigerator to be photos of our own family rather than the people who really live there, even if they're people we truly like.

FRIDAY OCTOBER 16th

Journal -- I haven’t been writing for quite a while -- sometimes because things have been so awful it’s been hard to write, sometimes because things have been better and I’ve done other things; sometimes inertia, sometimes feeling the endless-seeming back-and-forth swinging feels repetitive in writing, even if not at all repetitive in “real life” mode. . At any rate, here I am again, waiting in the transfusion room at the clinic while Nadine receives 2 more units of red blood cells.

That time of the cycle -- she got her chemo on October 7th. Day 9, her counts dropped a bit early.

Ah, transfusions. Again and again.

Nadine had a "dress rehearsal" for "Journeys" some time that week. I took her to the site, and got to see girls squiggling around, tech people getting things right or not, the big and fancy hall, with tables for the dinner, and tables being set up for the donated silent auction items. I remembered about Nadine's chain maille donation, and made a note to get it ready for the night of the event, which was Saturday October 17th. A big, big night.


THE LAKE AND THE BLUE HOUSE

Around late August or early September, Nadine and I took a nice drive along the beach road eastward on the way from west-of-Greece to dinner at the Klassen house. She was bouncing like a happy kid, especially when we arrived in Charlotte, where we gleefully looked at the houses on Beach Street parallel to the lake, saw the lake itself, and stopped at the beach. Nadine announced that she loved the air near there, and were both very happy. We found a rocky area across from the lake by an inlet, and sat down together, enjoying the weather. Nadine needed to cover herself up in the sun.

Nadine announced that she'd love to live there, and that she'd even consider a small place like that when she was a young adult.

A few days later, I saw an ad for a two-bedroom house in Charlotte a block from the beach, and it was affordable -- we made an appointment right away. It was an adorable little picture-postcard two-story brick house, with a surprisingly spacious neat fenced yard. The block was just plain sweet and old-fashioned looking like something out of Dick and Jane. Inside, there was a blue-carpeted little living room (we named the place the Blue House); the rest of the floors were wooden. There was a dining room, a kitchen with a too-small oven and fridge, and upstairs therewere two sweet bedrooms with dormers. Nadine exclaimed that she'd love to paint her bedroom walls a bright color; the agent said he could help her. The agent had just started his job and obviously liked us, even though we were honest that we didn't know how long we'd stay.

About three weeks later, having heard nothing, we drove by the house again and parked. Nadine sat on the front steps, as if she lived there. I talked to the mailman and he said it was a wonderful block. He thought Nadine was a lot younger than she is. Next, we visited Abbott's Ice Cream nearby close to the beach, and took our ice cream cones on a stroll to Ontario Beach Park, where we sat together on the steps facing Lake Ontario. I walked on the sand by the water, able to dip my hands and feet in.

Driving back through Charlotte, we stopped at a yard sale. She fell in love with a butter dish with a large brown and white ceramic cow for the top. I thought it was tacky, but for 3 dollars I got it for her. Afterwards I decided I liked it too. Sadly, it broke as Nadine was carrying it in the door. I miss it....

A PLACE TO STAY DURING THE WINTER

The apartment I'd thought we were getting on October 1st had fallen through. I was again going back to One of our wonderful homeschoolers put me in touch with a woman who was leaving for much of the winter for health reasons and was hoping for someone to watch and be in her house from October 25th through March 7th. Much as I wanted a place of our own, this was a wonderful gift. The centrall location would be a gift too -- betwen Wegman's and Abundance Co-Op near Nadine's beloved store Archimage, 10 minutes from Eastman, 15 minutes from the hospital, a wonderful neighborthood for taking long walks. The place is older and beautiful; coincidentally the bedroom has the same printed comforter that I have.
The people living there are kind, and offered for us to stay there. I figured that I could commute from the Southern Tier if needed, but the Thurstons insisted that we stay with them until we got the place on the 25th. Sally reasoned that she had hardly seen us anyway, as we'd been away so much.

I'm befuddled and overjoyed with all the kindness and love we've received. In so many places, with so many people, in so many ways.