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.