On Wednesday January 13th, Nadine won the Cattaraugus County Music Teachers' Association scholarship competition after all -- She played the Prokofiev sonata just GORGEOUS, and even my accompaniment went well. The back-roads made their own contribution -- no ice. She'll also be playing a solo piece at the All-County Music Festival in March.
The story -- first, in the morning she had clinic, where she'd get the Chemo Nasty Injections of dox and vincristine if her blood levels were high enough. It was icy out and my boot-soles got slick-- I took a fast fall on the porch, felt like my insides had been whirled in a blender, but was amazingly okay. We arrived at clinic -- plenty of time for it all if it goes right, I thought, although it might be tight. I wanted to be in Cattaraugus, 2 1/2 hours away, before 5PM to warm up. It meant a lot to get out at a suitable time, and it was SO slow. And after the blood test the lab should have sent results in under an hour, but 2 hours later they still weren't in. I was pacing back and forth down the hallways.. People at the clinic knew we needed "out" but we were stuck. We should have left by 2 -- at 1:45 the results came in -- the ANC wasn't high enough. No chemo. If she'd had chemo I don't know when we'd have gotten out. As it was, she had a quick doctor appointment, and out the door. By the way, I think that by then I forgot I'd been feeling sick, in all the hubbub.
Of course I went the wrong way on Route 390, had to stop for gas, then took 490 to Buffalo and south on 219. By then I was enjoying the back roads, being out on the road again. South of Springville, I located the obscure place to turn right with a metal shed for a landmark, looked like nowhere, okay the county road appeared and it was up-and-down narrow twisty roller-coaster unfamiliar roads. The snowy hills were beautiful though, and not one drop of ice on the roads, a gift especially for this ice-wimp! Miles onward, we reached Cattaraugus, turned into the school lot. Getting out, I noticed how cold it was.
5PM!!! Our target time!!!! We'd made it. Arriving, we met a cheery music teacher-coordinator, who actually had played the Prokofiev himself (here, I thought no one knew it around there). We were ushered into the room where the test would be held, so we could "warm up", and did a dry run -- the piano bench was so low the keyboard felt about level with my breastbone. Cushions, okay. We started -- HURRAY, the piece sounded gorgeous. Another contestant arrived, her turn to warm up -- the girl's gorgeous voice emanated from the warm-up room. Ruth Fuller (the band teacher) arrived, and after comfy pleasantries with her and the music teacher, Nadine and I did a dry run. This time we couldn't see each other. It was an amazing experience -- I don't think we'd ever coordinated and meshed our music together like that -- just perfect. And then we went in.
The two judges were cheery men, very informal, and made us both feel like we were at a music festival chatting with neighboring campers, banjo in hand. I've met many judges, and it was wonderful to have people who were so expert at putting us at ease. We started the piece, and I heard gorgeous notes coming from Nadine -- amazingly, it was even relaxing and enjoyable to go ahead and play the piece. She sounded so beautiful. Afterwards, Nadine presented her typed resume, which mentioned her classical background and also her "traditional" music and foot percussion, to the judges. One judge asked about foot percussion and asked if she could show him what it was. So she did a rousing version of Set Americaine. She tired out just at the end.
Finishing up, we left -- comic relief. I couldn't remember how to go on to Hinsdale, and it was dark out. Ruth was going back to Hinsdale and I asked if I could follow her home. Sure, and off we went. She turned, I turned, we kept going -- into a "dead end". Oh well, mistake one. We grinned ruefully at each other, she took off again -- we got lost. Finally, we got it, and it was off down the hills and eventually onto the Southern Tier Expressway and back to Hinsdale.
Nadine said she thought the young singer had won. I had little to say -- the girl had indeed sounded gorgeous, but so had Nadine, and I told Nadine how nice she sounded.
24 HOURS BECOME 24 MINUTES
We'd been told the results would be phoned to us in 24 hours.
We settled into the house for the evening -- there was the cat, and the fireplace, and the nice kitchen.
The phone rang. It was Ruth. I handed the phone to Nadine.
Ruth announced that the judges had decided that instead of calling within 24 hours, they'd call within 24 minutes! And Nadine was the winner!!
Well, this means we'll be back practicing the Prokofiev. She'll be playing it as a solo at the All-County music event on March 20th.
Tuesday, January 26, 2010
JAN 10-12, NADINE SAD THEN FRIENDS & FRENCH FRIES. INTENSE PIANO PRACTICE FOR ME
On January 10th, Nadine felt very wistful and sad about stuff. She'd really wanted to go to the orchestra rehearsal, but her counts were so low that it wasn't safe, even though we'd contacted her section members and none of them were sick.
She cried -- it was the first time I'd seen her cry in a long time. She was missing her old friends who'd gone off to college, and on top of that she couldn't visit the people she knew here. It was a long, hard night.
I did run into Betty, and Claire was in town -- Claire would be over here the next day (Monday), and the timing couldn't have been better.
FRENCH FRIES and FRIEND VISIT FOR NADINE
Claire was in town, and came over on Monday -- she and Nadine sat on the couch and watched videos and it was a treat for Nadine after all the misery.
I'd gotten what I thought was a "brilliant" idea for food to help Nadine gain weight. I made home-made French fries, dumping the potato strips into a deep saucepan of oil (at least the potatoes and oil were organic). Claire and Nadine sat together on the couch with the potatoes. I have to say, Nadine ate a lot of them.
INTENSE PIANO PRACTICE FOR NADINE'S COMPETITION
This was a period of intense piano practice for me for Nadine's flute competition on January 13th, and after about a month of struggling along, I finally started to "get it". I don't think I've practiced anything like I did this one. I was determined that I'd get this one right -- if I didn't, it could look like Nadine had made the blooper. Besides, darn it, I wanted to do something well. The piano part was SO hard -- I was practicing about 2, 3, and maybe more times a day, trying to get the benefit of multiple days of practice. It wasn't even the technique -- the passages just didn't seem to "lie" well on my fingers.. Every now and then, I'd ask Nadine to play it with me at my painfully reduced speed, so I could co-ordinate it with her and understand it more. One day we watched Emmanuel Pahud's version on YouTube, which helped with both coordination and interpretation -- I liked his accompanist's staccato in one part.
Then, after drumming through slow interminable metronomes and repeated passages I eventually got (most of) the passages up to metronome 69 (it needed to be 80). Then, I started to "get it" a few days before The Time. I couldn't do it on the "first try" but if I did a run-through first, I could actually do okay. It got better. It became more fluid. I had energy to listen to what Nadine was playing, and started to "hear" her part in my head when I practiced alone. There were parts with breathtaking pauses, and finally we got them into sync. Never mind the house getting messy and chores not getting done -- I was going to get this. I can say that it did wonders for my technique if not my ego while I worked on it.
I remember calling Ruth Fuller and warning her about how it might or mightn't sound. I still felt sick and the last day or two I had a hard time even sitting at the piano.
But at least I'd had a few nice run-throughs, and the tempo, finally crept up to 80, Nadine's speed. Nadine decided to speed it to 84 -- okay, I got it to 84! We were really sync-ing some of the pauses. It would have been SO nice to have another week to consolidate it all, but at least I hadn't had to play it in public the previous week.
Nadine was in a reasonable mood. We had much packing to do for leaving for the week-end after the competition, To bed, and off for the next day.
She cried -- it was the first time I'd seen her cry in a long time. She was missing her old friends who'd gone off to college, and on top of that she couldn't visit the people she knew here. It was a long, hard night.
I did run into Betty, and Claire was in town -- Claire would be over here the next day (Monday), and the timing couldn't have been better.
FRENCH FRIES and FRIEND VISIT FOR NADINE
Claire was in town, and came over on Monday -- she and Nadine sat on the couch and watched videos and it was a treat for Nadine after all the misery.
I'd gotten what I thought was a "brilliant" idea for food to help Nadine gain weight. I made home-made French fries, dumping the potato strips into a deep saucepan of oil (at least the potatoes and oil were organic). Claire and Nadine sat together on the couch with the potatoes. I have to say, Nadine ate a lot of them.
INTENSE PIANO PRACTICE FOR NADINE'S COMPETITION
This was a period of intense piano practice for me for Nadine's flute competition on January 13th, and after about a month of struggling along, I finally started to "get it". I don't think I've practiced anything like I did this one. I was determined that I'd get this one right -- if I didn't, it could look like Nadine had made the blooper. Besides, darn it, I wanted to do something well. The piano part was SO hard -- I was practicing about 2, 3, and maybe more times a day, trying to get the benefit of multiple days of practice. It wasn't even the technique -- the passages just didn't seem to "lie" well on my fingers.. Every now and then, I'd ask Nadine to play it with me at my painfully reduced speed, so I could co-ordinate it with her and understand it more. One day we watched Emmanuel Pahud's version on YouTube, which helped with both coordination and interpretation -- I liked his accompanist's staccato in one part.
Then, after drumming through slow interminable metronomes and repeated passages I eventually got (most of) the passages up to metronome 69 (it needed to be 80). Then, I started to "get it" a few days before The Time. I couldn't do it on the "first try" but if I did a run-through first, I could actually do okay. It got better. It became more fluid. I had energy to listen to what Nadine was playing, and started to "hear" her part in my head when I practiced alone. There were parts with breathtaking pauses, and finally we got them into sync. Never mind the house getting messy and chores not getting done -- I was going to get this. I can say that it did wonders for my technique if not my ego while I worked on it.
I remember calling Ruth Fuller and warning her about how it might or mightn't sound. I still felt sick and the last day or two I had a hard time even sitting at the piano.
But at least I'd had a few nice run-throughs, and the tempo, finally crept up to 80, Nadine's speed. Nadine decided to speed it to 84 -- okay, I got it to 84! We were really sync-ing some of the pauses. It would have been SO nice to have another week to consolidate it all, but at least I hadn't had to play it in public the previous week.
Nadine was in a reasonable mood. We had much packing to do for leaving for the week-end after the competition, To bed, and off for the next day.
JANUARY!! Braedbaking, clinic woes/transfusions, going to a dance alone, getting sick
Baking, baking...
I felt so grateful for so many things that I went into a happy frenzy of baking miniature gift loaves of bread -- for friends, for the neighbors, for the hospital staff, for TLC people, for various others. It felt so peaceful to do that. I have a feeling I'll be doing some more....Rolling dough, slathering it with thick gooey globs of cinnamon, sugar (organic) mixture, rolling it into a neat package, watching it rise outside and then inside the oven, the odor fragrant-izing the kitchen.
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND MY DISPLEASURE AT CLINIC HOURS
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor who'd just joined the staff. . She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. I mentioned my concern about not wanting to bring Nadine to the ER just for a transfusion, and she actually validated it. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up. What a "breath of fresh air".
To me, some clinic policies seem more time-for-the-medics than patient-and-family-oriented, and the sparse clinic hours, plus having to take them to the ER other times are the worst case in point -- very limited hours, then closing early on Friday each week-end -- and cancer patients have so many time they have to come in. The "kids" have to go to the emergency room if they need any visit after 4:30PM, Friday afternoon, or on the week-end. It's unsafe, and the waits are huge even if they are taken to their "own" room -- it also displaces other "standard" emergency patients who then have to wait longer. Having someone else give voice to this was very helpful t often seems like a clique at the hospital and clinic. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it, especially when it involves the institution itself.
Anyhow, the doc called the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
JANUARY 4th
There was a parents' meeting at TLC. More at another time.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm with Lauren, I have a feeling of peace.
IN PRAISE OF SPONTANEOUS VISITS
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's came in for her transfusion. counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I learned that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh. I hadn't realize this was unusual, although she wasn't the only one.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Dr. Craig Mullen (youth orchestra parent and also head of the pediatric oncology department).
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it. Eucerin or other gooey lotion for the flaking. Mederma for scars.
I CONTRA DANCE WITHOUT NADINE AT HER URGING
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to practice and still get to the dance. I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski.
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Surprise! My friend Betty Wayman was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day -- logistics had taken weeks. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing "Set", cooking, the works. Kara met Nadine at the English Composition class at MCC, and they have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice company for Nadine. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK RIGHT BEFORE SHE HAS TO ACCOMPANY NADINE FOR COMPETITION ON REALLY HARD SONATA
For a while I was exhausted, yet had trouble sleeping at night, trouble feeling okay during the day. Then I ended up with a sore throat, mucous, awful. And it meant I felt it was important to stay away from Nadine, use more sanitizer, sometimes wear in a mask in the car with Nadine, etc. I took a nap on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was t too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine but was stuck in bed. After all this work!
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine even if it was her last lesson before the competition, so she stayed home and did a lot of practicing here, sounding wonderful.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice..
I felt so grateful for so many things that I went into a happy frenzy of baking miniature gift loaves of bread -- for friends, for the neighbors, for the hospital staff, for TLC people, for various others. It felt so peaceful to do that. I have a feeling I'll be doing some more....Rolling dough, slathering it with thick gooey globs of cinnamon, sugar (organic) mixture, rolling it into a neat package, watching it rise outside and then inside the oven, the odor fragrant-izing the kitchen.
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND MY DISPLEASURE AT CLINIC HOURS
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor who'd just joined the staff. . She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. I mentioned my concern about not wanting to bring Nadine to the ER just for a transfusion, and she actually validated it. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up. What a "breath of fresh air".
To me, some clinic policies seem more time-for-the-medics than patient-and-family-oriented, and the sparse clinic hours, plus having to take them to the ER other times are the worst case in point -- very limited hours, then closing early on Friday each week-end -- and cancer patients have so many time they have to come in. The "kids" have to go to the emergency room if they need any visit after 4:30PM, Friday afternoon, or on the week-end. It's unsafe, and the waits are huge even if they are taken to their "own" room -- it also displaces other "standard" emergency patients who then have to wait longer. Having someone else give voice to this was very helpful t often seems like a clique at the hospital and clinic. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it, especially when it involves the institution itself.
Anyhow, the doc called the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
JANUARY 4th
There was a parents' meeting at TLC. More at another time.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm with Lauren, I have a feeling of peace.
IN PRAISE OF SPONTANEOUS VISITS
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's came in for her transfusion. counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I learned that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh. I hadn't realize this was unusual, although she wasn't the only one.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Dr. Craig Mullen (youth orchestra parent and also head of the pediatric oncology department).
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it. Eucerin or other gooey lotion for the flaking. Mederma for scars.
I CONTRA DANCE WITHOUT NADINE AT HER URGING
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to practice and still get to the dance. I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski.
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Surprise! My friend Betty Wayman was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day -- logistics had taken weeks. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing "Set", cooking, the works. Kara met Nadine at the English Composition class at MCC, and they have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice company for Nadine. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK RIGHT BEFORE SHE HAS TO ACCOMPANY NADINE FOR COMPETITION ON REALLY HARD SONATA
For a while I was exhausted, yet had trouble sleeping at night, trouble feeling okay during the day. Then I ended up with a sore throat, mucous, awful. And it meant I felt it was important to stay away from Nadine, use more sanitizer, sometimes wear in a mask in the car with Nadine, etc. I took a nap on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was t too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine but was stuck in bed. After all this work!
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine even if it was her last lesson before the competition, so she stayed home and did a lot of practicing here, sounding wonderful.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice..
DEC-JAN-- NO BLOOD FROM PORT, DINNERS AND BAKING BREAD, NEW YEARS EVE, JANUARY
NO BLOOD FROM NADINE'S PORT, UH-OH. TESTS DELAYED.
Jessie accessed Nadine's port as usual for her blood test. NOTHING CAME OUT. Absolutely nothing. Nadine got into amazing contortions to try to get it working, but nothing! It could have been a clot, but Jessie assured me it wasn't the serious kind, just something right around the tip of the access point that had to be cleaned out at the hospital, something called a TPA (concentrated heparin-like stuff). Nadine was given a choice -- she could have Jessie do a "regular" blood test through her peripheral vein in the arm, and then go to clinic at her normal 1PM appointment time to have the job done while waiting for usual hour after her asparinase injection (which was always done to make sure she didn't have an allergic reaction to it). OR she could avoid the extra poke and have her blood test the next day, but would have have to come in to clinic three hours early, to get the blood test done before the asparaginase. I thought it was a no-brainer -- just get the blood test over with at home -- but Nadine didn't want any more poking in her veins. So much for any free time on Wednesday -- I'd planned to prepare a nice meal for our friends the Pryntz-Nadwornies and also get the house cleaned.
Selfish thoughts? Absolutely! Was Nadine right to exercise her right of choice about her own body? Absolutely! Did I have a right to gripe? Questionable. Did I gripe anyway? Absolutely.
That night I tried to go to bed early ahead of the early clinic the next morning, and of course "early" turned into much later than I'd wanted it to be.
NADINE ACHING -- AWFUL REACTION TO THE BIG-BIG CHEMO AFTER ALL
Nadine had been getting achy, really achy from the chemo, perhaps worse than in a long, long time. And the spit started to return. I'm wondering if the spit is cyclical -- I should check. So sad that she was hurting, really hurting.
WEDNESDAY DEC 30th -- LOST KEYS, COUNTS DOWN, EARLY NEUTROPENIA, NO PORT PROBLEM.
On Wednesday morning all was going well, pre-cooking dinner, on time for clinic -- and then my car and house keys disappeared. I mean, they just vanished. I felt guilty as I hadn't wanted to take Nadine in to clinic early anyway. I slogged through the snow twice to ransack the car -- no keys. I checked pockets of everything I thought I could have worn -- no keys. I finally had to call clinic and they were pretty nice about it. I was wondering what friend I'd have to call for a ride, but finally looked once more in the pocket of the pants I'd already searched once, and there were the keys.
WEIGHT GAIN -- Confirmed! Four pounds up on the hospital scale!
PORT JUST FINE -- Nadine was installed in the treatment room, the nurse stood ready to de-clot the port with the super-heparin, and she checked Nadine's port once more. The port worked perfectly!!! Oh well. Blood was drawn.
UH-OH, VERY EARLY NEUTROPENIA, ANC OF 100 to 300 AFTER ONE WEEK
This was a surprise! Nadine's counts had plummeted for the cycle. No more mercaptopurine for her, and it was only Day 8. Her hematocrit was still 28, and her platelets were at 80, down but not critical. Margaret said there was no reason to check blood agian Friday although I was concerned -- she thought Nadine probably wouldn't need a trasnfusion, and clinic was closed anyway. AFter that, Nadine got her asparaginase, and after an hour (about 2:30) she was out.
We finally finished watching Mary Poppins, which really was delightful. The fun stuff, the run on the bank, the laughing men on the ceiling, Dick Van Dyke, and so on. Nadine smiled and smiled. I like watching her as much as I like watching the show. Afterwards, I pranced around the house singing "A spoonful of sugar makes the medicine go down" -- what can I say?
VISIT TO OTHER TLC GIRL
Nadine wanted to visit the very sick TLC girl upstairs, even though she would need a mask. Even though the TLC teens weren't encouraged to go up there, because she would be looking really bad. Margaret had a talk with Nadine first at clinic, both about the situation and about the fact that Nadine has a different kind of cancer. Nadine really was up for going, and Margaret supported her in doing just that. She also called to make sure it was okay with the family. We went, and it was, indeed, right to be up there. It seemed like everyone on the floor knew Nadine was coming up -- they were all warm. I decided that Nadine should go in alone, and waited in the rec room; after that, the girl's mother came out into the rec room and I held her. After that, I went in and visited as well. We left after that. Not much to say.
HOME DINNERS, FRIENDS AND TIREDNESS
I had a food shop to do and got back around 5 PM; Brian, Diana and the rest of their family were coming at 6. IThere were dirty dishes in the sink, and there was clutter in the living room that I should have taken downstairs a long time earlier. I looked amess too -- my hair was dirty and I was the opposite of "dressed for success". At least I got dinner into the oven.,
They came, cheery as ever -- wonderful 14-year-old Doriel assured me that he didn't care at all about the mess and just was glad to see me. Diaina marched right into the kitchen; the kids all went off to Nadine's messy room, then established themselves in the living room with a rowdy game of "set". Diana chopped zucchini while I washed dishes.
I felt close to falling asleep even at the merry dinner table. I realized how tired and depressed I was, and it was hard to be cheery even with loving friends there. I've felt like a "sad sack", with so much going wrong, and again I didn't want to burden my friends with my issues, although I was truthful at least with Diana. At the table, Diana and Brian caught me up on their lives and I was happy to hear what was going on with them -- other people's stories matter a lot to me. Diana was ready to leave early, and they all went. Later, Diana said she'd been feeling drained that night and didn't feel like much of a guest. I didn't feel like much of a hostess either. So I guess we were in parallel places.
It still was worthwhile to have them -- I LOVE having people over!!
NEW YEAR'S EVE
Even at an APC of 100 to 300, Nadine insisted on playing the New Year's Eve dance at Rochester, and I realized I'd just have to deal with it. She could take precautions, and avoid dancing with people and stay on the stage, but she was going to play for that dance.
As for me, I went to the New Years's Eve party at Alice's parents' house -- I was SO glad she'd invited me. It was an icy road, and I lamented not having on my snow tires yet, sigh. Still I braved it, avoiding the freeway. It was a wonderful family-atmosphere, with old-fashioned decorations, and gobs of people, and nice food, and a nice talk with Diane and Alice and others. I got treated to teens fiddling and to an informal and very lively reading of a Bach Brandenburg concerto, and watching older people and teeny kids bustling around, and a comfy house. Even I sat down and did some music in my own style at the piano. I thought of leaving for the dance and surprising Nadine before midnight, but got talked into staying (happily). I was chatting with Alice when suddenly the New Years countdown started, and we rushed into the party room, where the Times Square event was being shown, and at New Years there was celebration and fun. I left and the driveway was so icy that we walked on the snowy lawn to avoid falling. I had missed seeing Nadine, but she had fun and so did I. Later she told me the dance was "ordinary" .
In the morning, there was Sylvia on the couch. I had to get her up on time to get her to her parents' place.
JANUARY!!!!
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND SUPPORT FOR MY ISSUES IN CLINIC
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor, Dr. Casey, from Sloan Kettering. She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up and I got the sense she was outspoken. What a "breath of fresh air". I looked forward to meeting her.
I have to admit, that some of the clinic policies seem more time-for-the-medics friendly than patient-and-family-friendly, and the clinic hours are a case in point -- closing early on Friday each week-end. The Emergency Room is so unsafe to be in, and so cumbersome, even when they get someone right in like they do with her, that I'm reluctant to bring her. It just isn't right, and having someone else give voice to this has been VERY helpful!!!! It often seems like a clique over there. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it in practice, especially when it involves the institution itself.
Anyhow, Dr. Casey made the call to the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
CONTROVERSY OVER BEDTIME --
Okay, I felt it was important for Nadine to get to bed at a reasonable hour -- which was maybe 1AM but I didn't want it to be 2 or 3AM, with the way she was feeling. From how late NAdine staye din bed Sunday, it was probably the right thing to do, even though I got a bit of resistance.
CREATING BREADS FOR GIFTS
I baked a lot of bread in mini-loaf pans that I got at Cooks' World, and was creating many breads for gifts for people -- for parents, for the neighbors, etc. -- I would take them around. It was lovely to do this. I feel so much gratefulness for people around me.
JANUARY 4th
There was a parents' meeting at TLC.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm at Lauren's house, I have a feeling of peace.
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I found out that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Craig Mullen (youth orchestra parent and also head of the pediatric oncology department). This time he talked about having been convinced to join the medical center orchestra.
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it.
I CONTRA DANCED WITHOUT NADINE
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to pracice and still get to the dance. I also called Bob Fabinski, and let him know teens were coming -- there had been a sour man at the door the last time they'd come. He said he'd make a call.
I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski. That was a great way to handle the problem -- non-confrontational, and just delightful!
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Betty was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing, cooking, the works. Kara met Nadine at the English Composition class at MCC, and have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice food and the company for her. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK
I felt sick, and I was tired, exhausted really, trouble getting rest at night, trouble feeling okay during the day, then ended up with a sore throat, mucous, oh my, awful. And it meant I felt it was important to stay away from Nadine, use even more sanitizing, and so on and on. Oh well, it can happen too.
I took a rest in the middle of the day on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, miserable, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was too weak to pick up in the house, too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine, and was stuck in bed a lot.
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine to take the risk, so she stayed home and did a lot of practicing here, which was very, very nice.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice....
Jessie accessed Nadine's port as usual for her blood test. NOTHING CAME OUT. Absolutely nothing. Nadine got into amazing contortions to try to get it working, but nothing! It could have been a clot, but Jessie assured me it wasn't the serious kind, just something right around the tip of the access point that had to be cleaned out at the hospital, something called a TPA (concentrated heparin-like stuff). Nadine was given a choice -- she could have Jessie do a "regular" blood test through her peripheral vein in the arm, and then go to clinic at her normal 1PM appointment time to have the job done while waiting for usual hour after her asparinase injection (which was always done to make sure she didn't have an allergic reaction to it). OR she could avoid the extra poke and have her blood test the next day, but would have have to come in to clinic three hours early, to get the blood test done before the asparaginase. I thought it was a no-brainer -- just get the blood test over with at home -- but Nadine didn't want any more poking in her veins. So much for any free time on Wednesday -- I'd planned to prepare a nice meal for our friends the Pryntz-Nadwornies and also get the house cleaned.
Selfish thoughts? Absolutely! Was Nadine right to exercise her right of choice about her own body? Absolutely! Did I have a right to gripe? Questionable. Did I gripe anyway? Absolutely.
That night I tried to go to bed early ahead of the early clinic the next morning, and of course "early" turned into much later than I'd wanted it to be.
NADINE ACHING -- AWFUL REACTION TO THE BIG-BIG CHEMO AFTER ALL
Nadine had been getting achy, really achy from the chemo, perhaps worse than in a long, long time. And the spit started to return. I'm wondering if the spit is cyclical -- I should check. So sad that she was hurting, really hurting.
WEDNESDAY DEC 30th -- LOST KEYS, COUNTS DOWN, EARLY NEUTROPENIA, NO PORT PROBLEM.
On Wednesday morning all was going well, pre-cooking dinner, on time for clinic -- and then my car and house keys disappeared. I mean, they just vanished. I felt guilty as I hadn't wanted to take Nadine in to clinic early anyway. I slogged through the snow twice to ransack the car -- no keys. I checked pockets of everything I thought I could have worn -- no keys. I finally had to call clinic and they were pretty nice about it. I was wondering what friend I'd have to call for a ride, but finally looked once more in the pocket of the pants I'd already searched once, and there were the keys.
WEIGHT GAIN -- Confirmed! Four pounds up on the hospital scale!
PORT JUST FINE -- Nadine was installed in the treatment room, the nurse stood ready to de-clot the port with the super-heparin, and she checked Nadine's port once more. The port worked perfectly!!! Oh well. Blood was drawn.
UH-OH, VERY EARLY NEUTROPENIA, ANC OF 100 to 300 AFTER ONE WEEK
This was a surprise! Nadine's counts had plummeted for the cycle. No more mercaptopurine for her, and it was only Day 8. Her hematocrit was still 28, and her platelets were at 80, down but not critical. Margaret said there was no reason to check blood agian Friday although I was concerned -- she thought Nadine probably wouldn't need a trasnfusion, and clinic was closed anyway. AFter that, Nadine got her asparaginase, and after an hour (about 2:30) she was out.
We finally finished watching Mary Poppins, which really was delightful. The fun stuff, the run on the bank, the laughing men on the ceiling, Dick Van Dyke, and so on. Nadine smiled and smiled. I like watching her as much as I like watching the show. Afterwards, I pranced around the house singing "A spoonful of sugar makes the medicine go down" -- what can I say?
VISIT TO OTHER TLC GIRL
Nadine wanted to visit the very sick TLC girl upstairs, even though she would need a mask. Even though the TLC teens weren't encouraged to go up there, because she would be looking really bad. Margaret had a talk with Nadine first at clinic, both about the situation and about the fact that Nadine has a different kind of cancer. Nadine really was up for going, and Margaret supported her in doing just that. She also called to make sure it was okay with the family. We went, and it was, indeed, right to be up there. It seemed like everyone on the floor knew Nadine was coming up -- they were all warm. I decided that Nadine should go in alone, and waited in the rec room; after that, the girl's mother came out into the rec room and I held her. After that, I went in and visited as well. We left after that. Not much to say.
HOME DINNERS, FRIENDS AND TIREDNESS
I had a food shop to do and got back around 5 PM; Brian, Diana and the rest of their family were coming at 6. IThere were dirty dishes in the sink, and there was clutter in the living room that I should have taken downstairs a long time earlier. I looked amess too -- my hair was dirty and I was the opposite of "dressed for success". At least I got dinner into the oven.,
They came, cheery as ever -- wonderful 14-year-old Doriel assured me that he didn't care at all about the mess and just was glad to see me. Diaina marched right into the kitchen; the kids all went off to Nadine's messy room, then established themselves in the living room with a rowdy game of "set". Diana chopped zucchini while I washed dishes.
I felt close to falling asleep even at the merry dinner table. I realized how tired and depressed I was, and it was hard to be cheery even with loving friends there. I've felt like a "sad sack", with so much going wrong, and again I didn't want to burden my friends with my issues, although I was truthful at least with Diana. At the table, Diana and Brian caught me up on their lives and I was happy to hear what was going on with them -- other people's stories matter a lot to me. Diana was ready to leave early, and they all went. Later, Diana said she'd been feeling drained that night and didn't feel like much of a guest. I didn't feel like much of a hostess either. So I guess we were in parallel places.
It still was worthwhile to have them -- I LOVE having people over!!
NEW YEAR'S EVE
Even at an APC of 100 to 300, Nadine insisted on playing the New Year's Eve dance at Rochester, and I realized I'd just have to deal with it. She could take precautions, and avoid dancing with people and stay on the stage, but she was going to play for that dance.
As for me, I went to the New Years's Eve party at Alice's parents' house -- I was SO glad she'd invited me. It was an icy road, and I lamented not having on my snow tires yet, sigh. Still I braved it, avoiding the freeway. It was a wonderful family-atmosphere, with old-fashioned decorations, and gobs of people, and nice food, and a nice talk with Diane and Alice and others. I got treated to teens fiddling and to an informal and very lively reading of a Bach Brandenburg concerto, and watching older people and teeny kids bustling around, and a comfy house. Even I sat down and did some music in my own style at the piano. I thought of leaving for the dance and surprising Nadine before midnight, but got talked into staying (happily). I was chatting with Alice when suddenly the New Years countdown started, and we rushed into the party room, where the Times Square event was being shown, and at New Years there was celebration and fun. I left and the driveway was so icy that we walked on the snowy lawn to avoid falling. I had missed seeing Nadine, but she had fun and so did I. Later she told me the dance was "ordinary" .
In the morning, there was Sylvia on the couch. I had to get her up on time to get her to her parents' place.
JANUARY!!!!
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND SUPPORT FOR MY ISSUES IN CLINIC
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor, Dr. Casey, from Sloan Kettering. She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up and I got the sense she was outspoken. What a "breath of fresh air". I looked forward to meeting her.
I have to admit, that some of the clinic policies seem more time-for-the-medics friendly than patient-and-family-friendly, and the clinic hours are a case in point -- closing early on Friday each week-end. The Emergency Room is so unsafe to be in, and so cumbersome, even when they get someone right in like they do with her, that I'm reluctant to bring her. It just isn't right, and having someone else give voice to this has been VERY helpful!!!! It often seems like a clique over there. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it in practice, especially when it involves the institution itself.
Anyhow, Dr. Casey made the call to the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
CONTROVERSY OVER BEDTIME --
Okay, I felt it was important for Nadine to get to bed at a reasonable hour -- which was maybe 1AM but I didn't want it to be 2 or 3AM, with the way she was feeling. From how late NAdine staye din bed Sunday, it was probably the right thing to do, even though I got a bit of resistance.
CREATING BREADS FOR GIFTS
I baked a lot of bread in mini-loaf pans that I got at Cooks' World, and was creating many breads for gifts for people -- for parents, for the neighbors, etc. -- I would take them around. It was lovely to do this. I feel so much gratefulness for people around me.
JANUARY 4th
There was a parents' meeting at TLC.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm at Lauren's house, I have a feeling of peace.
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I found out that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Craig Mullen (youth orchestra parent and also head of the pediatric oncology department). This time he talked about having been convinced to join the medical center orchestra.
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it.
I CONTRA DANCED WITHOUT NADINE
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to pracice and still get to the dance. I also called Bob Fabinski, and let him know teens were coming -- there had been a sour man at the door the last time they'd come. He said he'd make a call.
I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski. That was a great way to handle the problem -- non-confrontational, and just delightful!
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Betty was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing, cooking, the works. Kara met Nadine at the English Composition class at MCC, and have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice food and the company for her. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK
I felt sick, and I was tired, exhausted really, trouble getting rest at night, trouble feeling okay during the day, then ended up with a sore throat, mucous, oh my, awful. And it meant I felt it was important to stay away from Nadine, use even more sanitizing, and so on and on. Oh well, it can happen too.
I took a rest in the middle of the day on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, miserable, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was too weak to pick up in the house, too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine, and was stuck in bed a lot.
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine to take the risk, so she stayed home and did a lot of practicing here, which was very, very nice.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice....
LATER DECEMBER
Slumps, rises, 7-layer dip, On December 24th, New Year's, visits, music, etc.
DECEMBER 24TH -- Nadine had a brief evening slump again, and lay in the study with her head on Barry's lap while I sat at the piano and improvised peaceful music for her. It was a long time since this had happened. I was glad to be able to help her feel better. I looked at her often as I created the music for her. The slump ended in about an hour or two, a relatively short time as these things go. given the huge slugs of big-big-big cvhemo meds she'd gotten in spinal fluid, veins, and mouth the day before, she was doing amazingly well.
We had a late-ish supper -- a steak from the farm-raised beef, a nice thick gravy, and baked sweet potatos, She'd lost about 38 pounds since May.
DECEMBER 25th
SEVEN-LAYER DIP!!! NADINE MADE IT AND ATE WELL. Nadine lovingly made glass casserole dish of 7-layer dip, nice and creamy with refried beans, guacamole, salsa, sour cream, grated cheese, lettuce, olives, and green onions. I had actually suggested it a while earlier, and as Nadine was into recipes, she looked it up online. I braved Wegman's and bought guacamole, sour cream, scallions, organic cheese, two sizes of tortillas and even olives. It was really delicious, and she ate very, very well. She had it with chips, and she had it rolled into huge burritos.
I felt heartened. Meanwhile I baked up cinnamon bread, making a loaf for Victor's family -- he was coming over to practice, and they always brought wonderful gifts. This time they brought fancy chocolates.
THE REST OF THE DAY
I blasted the house to get it clean and neat -- I was so tired of the mess and dirt. It felt excellent to do the job, even scrubbing the ktichen floor.
Victor arrived to practice with Nadine. I heard some surprising cacophony, and wondered what was going on -- I peeked in and found they were working on memorizing the thing. The bread finished just as Victor and his mom left.
Afterwards, a very animated Nadine left with Barry in the rain to go ice skating at an outdoor rink, and returned shortly afterwards, having not skated. Barry wanted to go to an open mike listed in the paper at Spot Coffee, but it was closed. I asked if we could drive around and look at the lights and we did -- it was beautiful seeing the cascade of lights radiating down from the Liberty Pole through the rainy windshiled, and other street scenes -- I loved photographing the images of wonderous lights in the rain. I got to bed about 2AM, way too late.
DECEMBER 26TH
A cold, rainy and wistful morning. But pancakes for the second day in a row were delicious. Maple syrup and berries and nuts. Yay!!
I finally set up the Berkey water filter. I feel I'd been completely irresponsible in allowing us all to drink unfiltered tap water for so long -- about 6 months. Each time I'd poured out water from the tap to drink, I'd have that nagging "I don't want us to drink this" feeling, but still delayed. Maybe it was the temporary moving and maybe it was the overwhelming list of things on my mind, and maybe, most likely really, it was the knowledge that no matter how simple it could seem in theory, the process of researching, choosing, price-checking,ordering, and installing a filter would have to be complicated and time-consuming. And it was. But finally I'd picked the Berkey, and there it was. The first thing that happened was that the taste was metallic, and the receptacle overlowed onto the floor making a huge mess. At least it was a clean mess, since I'd washed the floor.
I practiced again -- it was less than 3 weeks to playing it for her at the Cattaraugus scholarship competition, and it was a "bear" of an accompaniment, and I was going really, really slowly on it. It wasn't always fast (although it had its moments), but it was complex and hard to finger.
Nadine was going to record in Ithaca with her other band on Monday December 28th -- her chemo cycle might make it tricky, but she really wanted to do it, so it might work out -- I'd have to make sure themeds went right htis time. I felt sad that Nadine and I hadn't finished our own CD, which we'd started at the same studio -- I even felt a bit jealous that she was going to record with another group and she and I hadn't worked there since her diagnosis. Oh well, it's not their fault. It means I should call and arrange to take us over to finish our own work.
Nadine spent a long time peacefully knitting -- she has been doing a lot of that, plus chain maille and it was nice to see it happen.
There was a quiet day, and we all went up to Hilton to visit some friends of Barry's, in their 80's, about a half hour away -- the river was behind the house, and we all had excellent talks and fun. It felt like we were out of the city and in a peaceful family situation. The men talked politics and the two "old ladies" (her and me) talked about families, and about when enough talk of politics was enough, at least in our view.
Nadine rested up a lot on the couch, probably with her knitting, and she loved petting the beautiful soft cat -- she said she was getting her "cat fix". She shared some flute with everyone later on.
PREPARING FOR PROKOFIEV As for me, I was doing a lot of practicing on the Prokofiev, a consuming project. I wonder if I'd do this much intense practice if she wasn't needing it. Perhaps I should arrange to do a recital myself. The last few weeks included very intense practice, divided into several sessions per day to get the "equivalent" of more than one day of practice per day; this was ongoing. I felt I HAD to have it right for her competition day, and it was a challenge!!
NADINE OFF TO ITHACA On December 27th, Nadine left with Barry to meet Rachel in Hornell to record in Ithaca, and I had another catch-up day, getting practice and chores done. Nadine had forgotten to bring the hand sanitizer I'd gotten to distribute over there, and they stopped to get some. I don't think much else was eventful. I did fuss to make sure some people there knew she had meds to take, including Will Russell (the engineer, who understood) and Peter Blue, who is an emergency medical technician and whose wife is a nurse. I felt she was in okay hands, but after the last mess of forgotten medicine, I felt compulsive, and sent out an email with her med list. I think Nadine felt I was coddling her way too much. I often tell people that all my checking up is more to make feel better. I think I deserve it.
DECEMBER 28th (Monday) -- Actually a peaceful day by myself. I was still working hard on Prokofiev, and also on catching uo on other chores. I also feel it's important to compile notes on our experiences, and felt seriously behind. Nadine returned on Tuesday morning.
PRACTICE INTERFERES WITH SOME TIME TOGETHER I felt so wrapped up in having to practice the Prokofiev for her competition that I feel that I was neglecting doing things with Nadine that were important too. She wanted me to sit with her and watch a movie together. I felt so driven to practice that I told her I needed to finish my work first. By the time I finished, it was too late to watch the movie together, and I felt VERY sad.
TIME TOGETHER --
I did do some things with Nadine though, and those were glorious. She invited me to knit with her, and that was just stellar to do, sitting down on the couch and creating things.
Another time, she invited me to collage with her. I had generally found collaging not gratifying except for Nadine's company and pleasure in it, but I started to enjoy the collaging as well, and created a nice piece (in my eye) about enjoying nature, and then created a note-card that I'd like to send to Lauren Sample.
She invited me to watch Pride and Prejudice with her and we sat on the couch with it and I enjoyed it so much, as did she, all the frills and deep stuff and misunderstandings and lifestyle things, and dances, and beautiful photography and words. It was wonderful to share that with just us.
NADINE'S WEIGHT UP -- YAY FOR 7-LAYER DIP
Nurse Jessie came on Tuesday December 29th .. NADINE GAINED 6 POUNDS!!! Go, Nadine!
DECEMBER 24TH -- Nadine had a brief evening slump again, and lay in the study with her head on Barry's lap while I sat at the piano and improvised peaceful music for her. It was a long time since this had happened. I was glad to be able to help her feel better. I looked at her often as I created the music for her. The slump ended in about an hour or two, a relatively short time as these things go. given the huge slugs of big-big-big cvhemo meds she'd gotten in spinal fluid, veins, and mouth the day before, she was doing amazingly well.
We had a late-ish supper -- a steak from the farm-raised beef, a nice thick gravy, and baked sweet potatos, She'd lost about 38 pounds since May.
DECEMBER 25th
SEVEN-LAYER DIP!!! NADINE MADE IT AND ATE WELL. Nadine lovingly made glass casserole dish of 7-layer dip, nice and creamy with refried beans, guacamole, salsa, sour cream, grated cheese, lettuce, olives, and green onions. I had actually suggested it a while earlier, and as Nadine was into recipes, she looked it up online. I braved Wegman's and bought guacamole, sour cream, scallions, organic cheese, two sizes of tortillas and even olives. It was really delicious, and she ate very, very well. She had it with chips, and she had it rolled into huge burritos.
I felt heartened. Meanwhile I baked up cinnamon bread, making a loaf for Victor's family -- he was coming over to practice, and they always brought wonderful gifts. This time they brought fancy chocolates.
THE REST OF THE DAY
I blasted the house to get it clean and neat -- I was so tired of the mess and dirt. It felt excellent to do the job, even scrubbing the ktichen floor.
Victor arrived to practice with Nadine. I heard some surprising cacophony, and wondered what was going on -- I peeked in and found they were working on memorizing the thing. The bread finished just as Victor and his mom left.
Afterwards, a very animated Nadine left with Barry in the rain to go ice skating at an outdoor rink, and returned shortly afterwards, having not skated. Barry wanted to go to an open mike listed in the paper at Spot Coffee, but it was closed. I asked if we could drive around and look at the lights and we did -- it was beautiful seeing the cascade of lights radiating down from the Liberty Pole through the rainy windshiled, and other street scenes -- I loved photographing the images of wonderous lights in the rain. I got to bed about 2AM, way too late.
DECEMBER 26TH
A cold, rainy and wistful morning. But pancakes for the second day in a row were delicious. Maple syrup and berries and nuts. Yay!!
I finally set up the Berkey water filter. I feel I'd been completely irresponsible in allowing us all to drink unfiltered tap water for so long -- about 6 months. Each time I'd poured out water from the tap to drink, I'd have that nagging "I don't want us to drink this" feeling, but still delayed. Maybe it was the temporary moving and maybe it was the overwhelming list of things on my mind, and maybe, most likely really, it was the knowledge that no matter how simple it could seem in theory, the process of researching, choosing, price-checking,ordering, and installing a filter would have to be complicated and time-consuming. And it was. But finally I'd picked the Berkey, and there it was. The first thing that happened was that the taste was metallic, and the receptacle overlowed onto the floor making a huge mess. At least it was a clean mess, since I'd washed the floor.
I practiced again -- it was less than 3 weeks to playing it for her at the Cattaraugus scholarship competition, and it was a "bear" of an accompaniment, and I was going really, really slowly on it. It wasn't always fast (although it had its moments), but it was complex and hard to finger.
Nadine was going to record in Ithaca with her other band on Monday December 28th -- her chemo cycle might make it tricky, but she really wanted to do it, so it might work out -- I'd have to make sure themeds went right htis time. I felt sad that Nadine and I hadn't finished our own CD, which we'd started at the same studio -- I even felt a bit jealous that she was going to record with another group and she and I hadn't worked there since her diagnosis. Oh well, it's not their fault. It means I should call and arrange to take us over to finish our own work.
Nadine spent a long time peacefully knitting -- she has been doing a lot of that, plus chain maille and it was nice to see it happen.
There was a quiet day, and we all went up to Hilton to visit some friends of Barry's, in their 80's, about a half hour away -- the river was behind the house, and we all had excellent talks and fun. It felt like we were out of the city and in a peaceful family situation. The men talked politics and the two "old ladies" (her and me) talked about families, and about when enough talk of politics was enough, at least in our view.
Nadine rested up a lot on the couch, probably with her knitting, and she loved petting the beautiful soft cat -- she said she was getting her "cat fix". She shared some flute with everyone later on.
PREPARING FOR PROKOFIEV As for me, I was doing a lot of practicing on the Prokofiev, a consuming project. I wonder if I'd do this much intense practice if she wasn't needing it. Perhaps I should arrange to do a recital myself. The last few weeks included very intense practice, divided into several sessions per day to get the "equivalent" of more than one day of practice per day; this was ongoing. I felt I HAD to have it right for her competition day, and it was a challenge!!
NADINE OFF TO ITHACA On December 27th, Nadine left with Barry to meet Rachel in Hornell to record in Ithaca, and I had another catch-up day, getting practice and chores done. Nadine had forgotten to bring the hand sanitizer I'd gotten to distribute over there, and they stopped to get some. I don't think much else was eventful. I did fuss to make sure some people there knew she had meds to take, including Will Russell (the engineer, who understood) and Peter Blue, who is an emergency medical technician and whose wife is a nurse. I felt she was in okay hands, but after the last mess of forgotten medicine, I felt compulsive, and sent out an email with her med list. I think Nadine felt I was coddling her way too much. I often tell people that all my checking up is more to make feel better. I think I deserve it.
DECEMBER 28th (Monday) -- Actually a peaceful day by myself. I was still working hard on Prokofiev, and also on catching uo on other chores. I also feel it's important to compile notes on our experiences, and felt seriously behind. Nadine returned on Tuesday morning.
PRACTICE INTERFERES WITH SOME TIME TOGETHER I felt so wrapped up in having to practice the Prokofiev for her competition that I feel that I was neglecting doing things with Nadine that were important too. She wanted me to sit with her and watch a movie together. I felt so driven to practice that I told her I needed to finish my work first. By the time I finished, it was too late to watch the movie together, and I felt VERY sad.
TIME TOGETHER --
I did do some things with Nadine though, and those were glorious. She invited me to knit with her, and that was just stellar to do, sitting down on the couch and creating things.
Another time, she invited me to collage with her. I had generally found collaging not gratifying except for Nadine's company and pleasure in it, but I started to enjoy the collaging as well, and created a nice piece (in my eye) about enjoying nature, and then created a note-card that I'd like to send to Lauren Sample.
She invited me to watch Pride and Prejudice with her and we sat on the couch with it and I enjoyed it so much, as did she, all the frills and deep stuff and misunderstandings and lifestyle things, and dances, and beautiful photography and words. It was wonderful to share that with just us.
NADINE'S WEIGHT UP -- YAY FOR 7-LAYER DIP
Nurse Jessie came on Tuesday December 29th .. NADINE GAINED 6 POUNDS!!! Go, Nadine!
Monday, January 25, 2010
END OF AN ERA -- THE LAST SPINAL-PLUS-DOXORUBICIN (BIG-BIG-BIG) CHEMO (Followed by Sushi Party)
The last Spinal-Plus-Doxyrubicin etc. happened on December 23rd! Nadine is also nearing the end of her "Consolidation" phase of chemo and will soon be in the next phase, "maintenance" -- still substantial, but with no more doxorubicin or asparaginase. After this big-big-chemo, only two more doses of doxorubicin were left, and about 6 more asparaginase. Also in the new phase she'll still get intrathecal spinal injections, but every 18 weeks instead of every 9.
THE CYCLE WENT WITHOUT DELAYS!! For this monumental final Big-Big-Chemo her counts went up on time!!!! The APC was even up at 1300, over the required amount of 1000! We found that out Wednesday morning.
Clinic was at 9:30 AM, early as usual since Nadine couldn't eat in the morning. Margaret emailed that Nadine's ANC was 1300, 300 over the required amount. Another freezy, icy morning.
Nadine went off into the procedure room, and there was Dr. Andrea Hinkle, the stately yet cheery doctor who had orchestrated the treatment for Nadine's medical crisis of sepsis in the ICU -- apaprently she takes a stint in the procedure room perioidcally.
DOCTOR SAID NADINE WORKED TO HEAL
I told Dr. Hinkle how much it had meant to me how she'd handled Nadine's crisis, and she replied that Nadine had done most of the work.
The spinal fluid aspiration and injection went as always -- this time Nadine did little oohing and ahhing as she'd done during the last procedure. She lay still, curled up on her side (as positioned by the nurse). Curled up under the cover with her fuzzy bald head, she sometims reminded me of a sweet baby, as I watched her underneath the cover.
Margaret, appropriately garbed, did the usual, oozing competence. She painted Nadine's back with something that looked like Betadine, inserted a scarily long needle or catheter, and attached a tube into which Nadine's crystalline spinal fluid dripped out, slow-slow-slowly, tiny drops in slow succession. This wasn't true of everyone, but Nadine's went slow. Then Margaret injected the straw-yellow methatrexate (which looked like dilute urine to me), the hydrocortisone, and the cytarabine into the spinal fluid, removed the apparatur, and placed a piece of gauze over the point of insertion.
All left except Dr. Hinkle, whom I asked if I could have a photo for our hospital album -- she looked so festive with her smooth dark hair and bright winter-patterned cardigan. We chatted some -- She turned out to enjoy music as well, and had just fallen in love with the sound of an oboe at an RPO concert.
After the procedure, we were escorted to Treatment Room 7, with its comfortable chairs, the super-duper one for Nadine and the "Parent Chair". Nadine got her IV chemo-meds through her port -- dex, dox and vincristine.
While we were there, we watched Mary Poppins together -- it had been my pick this time, hilarious and sweet with plenty of barbs about stuffy, unappreciative parents and greedy bankers. I saw Nadine grinning during some of it.
Another sign that I'm aging -- when I used to watch Julie Andrews on film, she seemed so old to me -- this time she looked awfully young.
Nadine started to feel shaky in the treatment room, and I was concerned even though it was normal.
An era over.
NADINE'S WEIGHT AGAIN
I was really worrying that Nadine's weight had to do with the cancer -- she seemed to be eating more than her weight would indicate. There were suggestions of mashed potatoes, gravy, cream, rich food, evaporated milk, etc. And no more neutropenic diet for the most psrt -- maple syrup, nuts, all of it were okay again.
MED DOSES -- I asked if Nadine's medicine doeses should be raised again, as her chemo was being done on time; I was told, however, that the doses would still stay the same, adjusted for weight as always.
AFTERWARDS, A FINAL UNPACKING
We were thinking of going to 414 to visit Amber, from TLC, who was in the hospital, but Nadine wasn't up to it after the Big Big Chemo and also Nadine was worried about any chance of giving Amber a cold (although I didn't think she had one), and we left.
We stopped at the Kanack School, where I thought we'd left a few things after we'd moved out. I was shocked when I looked into the dresser Nadine had used -- it was stuffed with Nadine's clothing tha tI didn't even realize was there, and when I looked in the closet of the room I'd used, it was stuffed with my clothing that I hadn't remebered was there either. Nadine triumphantly exclaimed that she'd found her missing journal. I decided to clean out all our things, which took about an hour of going up and down stairs, but finally it's all cleaned out. One more chore finished, this particular chore being one I hadn't even known existed.
The tedious emotion of moving from place to place flooded me again, and I was disgusted, disgruntled and dismayed. There were no boxes, but Nadine thought of stuffing clothing into pillowcases. We ended up with about 10 fully stuffed pillowcases in addition to a bunch of papers and a Therm-A-Rest mattress pad.
MORE STUFF TO DO
After we arrived home I was stuck helping Nadine write an answer to the Michigan composition teacher's email to Nadine after receiving her composition portfolio.
He had emailed and said he had liked listening to the portfolio -- he wrote that he'd liked listening to it, and that it was the only applkcation he'd ever received that had traditional Irish tunes in it.
However, he wanted to know what degree she was applying for, and he was wondering why the rest of Nadine's application wasn't in (he didn't realize the dean had told her to get the composition portfolio in first). Nadine was on the couch and not up to drafting a letter, and it had to go in. I didn't want to draft the letter for her, and wanted to relax before we went to the sughi party with the Klassens and the Waymans that night. Nadine kept finding fault with parts of my draft, whihc was her right, but I felt hurried to just get the thing over with. It all took about an hour and there was no time left to rest up. of course, wehn it was finally out, I got an automated reply that Prof. Evans was away from his email until January 4th anyway. By then, I was cranky and angry at myself for not having gotten this over with earlier and for not having simply let the prof. know that I was writing the letter because Nadine wasn't feeling up to wriing it. Nadine was on the couch in tears, and I felt paralyzed.
SUSHI PARTY
I realized it was time for the sushi party at the Klassen household, somethining Nadine had looked forward to a huge amount. However, she said she wasn't looking forward to it, although she didn't know why. If elt "torn" about styaing home with her or insisting she go -- finally I told her it was imortant to go to it, and she went. I felt like a fool an an ass for doing it.
It turned out Betty had had a cold, and she ended up not going to the party, and one reason I'd insisted on going was to have an evening with all the families together. And now I was stuck at a party I didn't think we should have gone to.
Hwoever, Nadine perked up and had a wonderfl time with Sylvia and Claire and the rest of them; preparing the sushi was fun as alwyas; Claire, Sylvia and Nadine did the usual compliment of hugging.
HOME AND MORE FOOD< MORE CAREGIVING
After we came home, I expected to finally get some rest, but Nadine was hungry again when we got back, so I cooked fried sweet potato for her and prepared some Spira-Teen in powdered soymilk (she couldn't have dairy because she couldn't take mercaptopurine with dairy). I felt annoyed that after we'd had "dinner" I still had to cook late in the evening. although I was gratified I could create something nurtrious and high-calorie with the veyr limited food inventory I had.
I was feeling so darn blue and band about myself. Objectively, I know I've done plenty of decent caregiving and I've had a lot to do under pressure. People have beenwonderful assuring me of that. Yet, when I make a mistake, or think I might have made one, I take it hard, especially if it concerns Nadine. This sadly can make me cranky enough to feel I've made even more mistakes. I was still worried that I'd overdone it by urging her to go to that evening party and possibly tiring her out.
Nadine, meanwhile, seemed okay, And in fact she turned out okay -- no ill effects at all. SO -- we ended up with an okay Nadine and an cranky and disgruntled me. Oh well, I guess it happens.
THE CYCLE WENT WITHOUT DELAYS!! For this monumental final Big-Big-Chemo her counts went up on time!!!! The APC was even up at 1300, over the required amount of 1000! We found that out Wednesday morning.
Clinic was at 9:30 AM, early as usual since Nadine couldn't eat in the morning. Margaret emailed that Nadine's ANC was 1300, 300 over the required amount. Another freezy, icy morning.
Nadine went off into the procedure room, and there was Dr. Andrea Hinkle, the stately yet cheery doctor who had orchestrated the treatment for Nadine's medical crisis of sepsis in the ICU -- apaprently she takes a stint in the procedure room perioidcally.
DOCTOR SAID NADINE WORKED TO HEAL
I told Dr. Hinkle how much it had meant to me how she'd handled Nadine's crisis, and she replied that Nadine had done most of the work.
The spinal fluid aspiration and injection went as always -- this time Nadine did little oohing and ahhing as she'd done during the last procedure. She lay still, curled up on her side (as positioned by the nurse). Curled up under the cover with her fuzzy bald head, she sometims reminded me of a sweet baby, as I watched her underneath the cover.
Margaret, appropriately garbed, did the usual, oozing competence. She painted Nadine's back with something that looked like Betadine, inserted a scarily long needle or catheter, and attached a tube into which Nadine's crystalline spinal fluid dripped out, slow-slow-slowly, tiny drops in slow succession. This wasn't true of everyone, but Nadine's went slow. Then Margaret injected the straw-yellow methatrexate (which looked like dilute urine to me), the hydrocortisone, and the cytarabine into the spinal fluid, removed the apparatur, and placed a piece of gauze over the point of insertion.
All left except Dr. Hinkle, whom I asked if I could have a photo for our hospital album -- she looked so festive with her smooth dark hair and bright winter-patterned cardigan. We chatted some -- She turned out to enjoy music as well, and had just fallen in love with the sound of an oboe at an RPO concert.
After the procedure, we were escorted to Treatment Room 7, with its comfortable chairs, the super-duper one for Nadine and the "Parent Chair". Nadine got her IV chemo-meds through her port -- dex, dox and vincristine.
While we were there, we watched Mary Poppins together -- it had been my pick this time, hilarious and sweet with plenty of barbs about stuffy, unappreciative parents and greedy bankers. I saw Nadine grinning during some of it.
Another sign that I'm aging -- when I used to watch Julie Andrews on film, she seemed so old to me -- this time she looked awfully young.
Nadine started to feel shaky in the treatment room, and I was concerned even though it was normal.
An era over.
NADINE'S WEIGHT AGAIN
I was really worrying that Nadine's weight had to do with the cancer -- she seemed to be eating more than her weight would indicate. There were suggestions of mashed potatoes, gravy, cream, rich food, evaporated milk, etc. And no more neutropenic diet for the most psrt -- maple syrup, nuts, all of it were okay again.
MED DOSES -- I asked if Nadine's medicine doeses should be raised again, as her chemo was being done on time; I was told, however, that the doses would still stay the same, adjusted for weight as always.
AFTERWARDS, A FINAL UNPACKING
We were thinking of going to 414 to visit Amber, from TLC, who was in the hospital, but Nadine wasn't up to it after the Big Big Chemo and also Nadine was worried about any chance of giving Amber a cold (although I didn't think she had one), and we left.
We stopped at the Kanack School, where I thought we'd left a few things after we'd moved out. I was shocked when I looked into the dresser Nadine had used -- it was stuffed with Nadine's clothing tha tI didn't even realize was there, and when I looked in the closet of the room I'd used, it was stuffed with my clothing that I hadn't remebered was there either. Nadine triumphantly exclaimed that she'd found her missing journal. I decided to clean out all our things, which took about an hour of going up and down stairs, but finally it's all cleaned out. One more chore finished, this particular chore being one I hadn't even known existed.
The tedious emotion of moving from place to place flooded me again, and I was disgusted, disgruntled and dismayed. There were no boxes, but Nadine thought of stuffing clothing into pillowcases. We ended up with about 10 fully stuffed pillowcases in addition to a bunch of papers and a Therm-A-Rest mattress pad.
MORE STUFF TO DO
After we arrived home I was stuck helping Nadine write an answer to the Michigan composition teacher's email to Nadine after receiving her composition portfolio.
He had emailed and said he had liked listening to the portfolio -- he wrote that he'd liked listening to it, and that it was the only applkcation he'd ever received that had traditional Irish tunes in it.
However, he wanted to know what degree she was applying for, and he was wondering why the rest of Nadine's application wasn't in (he didn't realize the dean had told her to get the composition portfolio in first). Nadine was on the couch and not up to drafting a letter, and it had to go in. I didn't want to draft the letter for her, and wanted to relax before we went to the sughi party with the Klassens and the Waymans that night. Nadine kept finding fault with parts of my draft, whihc was her right, but I felt hurried to just get the thing over with. It all took about an hour and there was no time left to rest up. of course, wehn it was finally out, I got an automated reply that Prof. Evans was away from his email until January 4th anyway. By then, I was cranky and angry at myself for not having gotten this over with earlier and for not having simply let the prof. know that I was writing the letter because Nadine wasn't feeling up to wriing it. Nadine was on the couch in tears, and I felt paralyzed.
SUSHI PARTY
I realized it was time for the sushi party at the Klassen household, somethining Nadine had looked forward to a huge amount. However, she said she wasn't looking forward to it, although she didn't know why. If elt "torn" about styaing home with her or insisting she go -- finally I told her it was imortant to go to it, and she went. I felt like a fool an an ass for doing it.
It turned out Betty had had a cold, and she ended up not going to the party, and one reason I'd insisted on going was to have an evening with all the families together. And now I was stuck at a party I didn't think we should have gone to.
Hwoever, Nadine perked up and had a wonderfl time with Sylvia and Claire and the rest of them; preparing the sushi was fun as alwyas; Claire, Sylvia and Nadine did the usual compliment of hugging.
HOME AND MORE FOOD< MORE CAREGIVING
After we came home, I expected to finally get some rest, but Nadine was hungry again when we got back, so I cooked fried sweet potato for her and prepared some Spira-Teen in powdered soymilk (she couldn't have dairy because she couldn't take mercaptopurine with dairy). I felt annoyed that after we'd had "dinner" I still had to cook late in the evening. although I was gratified I could create something nurtrious and high-calorie with the veyr limited food inventory I had.
I was feeling so darn blue and band about myself. Objectively, I know I've done plenty of decent caregiving and I've had a lot to do under pressure. People have beenwonderful assuring me of that. Yet, when I make a mistake, or think I might have made one, I take it hard, especially if it concerns Nadine. This sadly can make me cranky enough to feel I've made even more mistakes. I was still worried that I'd overdone it by urging her to go to that evening party and possibly tiring her out.
Nadine, meanwhile, seemed okay, And in fact she turned out okay -- no ill effects at all. SO -- we ended up with an okay Nadine and an cranky and disgruntled me. Oh well, I guess it happens.
Late December
On December 18th, Nadine finally got to visit with her friend Sylvia, the first time those two got together since Sylvia went to college.
The day before that, she'd had a quick transfusion. It's very rare that she has a quick transfusion -- usually she's in there a long time. That one, though, just worked. Why don't they all go so smoothly? I'm not going to answer that question.
There was a joyful reunion between the two girls, after which they trotted off and renewed themselves. As for me, I visited with Sue, dried the dishes while she washed them, and helped her peel and chop butternut squash at the table, which is the kind of interaction I just love.
I drove off into the cold night and had a lovely night alone, knowing Nadine was in excellent hands. I had a nice pracice session on the piano, then sat on the couch, realized how exhausted I was, and went to bed early.
The next day (Sunday January 19th), I got up still feeling tired.
Nadine arrived looking happy, and then things deteriorated. She announced she'd forgotten to take one of her important medicines. And then she forgot it again, and didn't get it until after her Rochester Philharmonic Youth Orchestra rehearsal.
To make matters worse, she had gauze rather than the Allevan pad on the wound site -- I was still worried about it getting infected after all these months and months of care, when it was just about to be healed. She in turn was tired of wearing those bandages, and refused change it, insisting it was fine. I said I wasn't taking her to her rehearsal until the bandage was changed. She blew up at me, and finally she very grudgingly let me change the bandage. We were both tense, which is a perfect way to bungle things -- I somehow squirted saline all over the place, drenching the area around Nadine and infuriating her (at least I got it where it belonged, right? }
When I questioned Nadine about the missed medication, she said something about being self-conscious with all those medicines at a friend's house.
WE BOTH NEEDED SPACE -- AND WE HUGGED
Nadine said she was looking forward to spending a night away from me. I said that I was looking forward to it as well. Suddenly the tension dissipated as Nadine looked knowingly and lovingly at me. We hugged.
_______
Nadine told me that being inside the house has felt uncomfortable and confining, and that she misses being "on the move". she said she'd like to open the windows, but sadly we can't have that in the middle of the winter. She said that driving to Sylvia and Claire's place was the longest drive she'd taken in a while, and that she misses traveling like we used to do.
Nadine was late to rehearsal, and I was late to the pleasantly crowded neighborhood "open house" party across the street that I'd been given an invitation to. I went, and felt like I was in a different world of designer furniture and up-and-coming (although congenial) young professionals, although I loved the book on the desk about the joys of handwritten notes. It reminded me that I would like to write some. There was amazing food, and a group came together and sang "Chestnuts Roasting on an Open Fire", and then "Let It Snow", two songs I confess are real favorites. I felt reassured that somehow some relics of what might have been a more peaceful past still thrived.
PARTIES AND PHOTO-SHOOT WITH CARRIE
Nadine, Claire, and Sylvia were going to do a "photo shoot" at Carrie's studio the next day, and prepared some stuff for it. Three friends with their pajamas at a photo-shoot, oh my.
Nadine's youth orchestra also had a party that day, which was much fun for her. and her friend Louisa invited her to be her roommate on the orchestra's April tour to Quebec.
Nadine, Claire and Sylvia had a "photo-shoot" with Carrie and Carrie's studio, with the girls driving in on their own; I had to get Nadine's medicines to the studio to take to Sue's house, as Jessie, the visiting nurse, was going over there to do blood tests. When I met them over there to deliver meds, they were having a fine time, including mixing up socks.
As for me, I did a bunch of work during the day, and also had frustrations -- the first few days alone, and I had so many real and perceived chores. It took over an hour on Mondahy to find the pringer didn't work -- all I was trying to do was communicate with the Hinsdale district about Nadine's paperwork, and it turned into a morning ordeal which led to me emailing the letter to Fedex-Kinko's to print up. I also wanted to cactch up on myh blog" as I had felt so bad about being behind on writing. I did it "with feeling" and was amazed at what I could remember. I also practiced hard at the piano and actually regained some lost technique. A day alone to catch up was nice.
FIRST DAY OF WINTER PASSED FORGOTTEN
I noticed that I'd let the Solstice slip by. So many other things were going on, that my "traditional" points that I notice were almost forgotten. The official beginning of winter. When Nadine was little, I used to mark it by making cut-out "snowflakes" with Nadine and tossing or dropping them so they floated through the air to the floor.
BLOOD CHECKING FOR CHEMO, and the Day
Jessie checked Nadine's blood again, but there was no result there. This was going to be BIG-BIG CHemo, complete with Intrathecal chemo plus dox-dex-vincristine. Because her counts had been 1000 the last week (amazing!), I was pretty sure she'd get it, but it would have been nice to know, as she couldn't eat early in the morning if she got it.
I got a phone call -- Nadine had forgotten her Prilosec for her reflux, and had a tummy ache, so I hotfooted it to Sue and Sylvia's house early, where Nadine was staying, and bought some Prilosec on the way. So no more practicing piano for me. I visited and took Nadine home before the TLC meeting.
Nadine was hungry again -- we went to Panera on the way home and Nadine got her beloved soup -- we sat togehter, with me ordering black bean soup and she ordering cream of chicken soup -- I just wanted her to EAT. She had samplings of each soup but had a total of less than I wanted her to have.
TLC MEETING
On Tuesday December 22nd there was another TLC meeting, which I thought would be introspective, but there were happy hugging girls at it, one coming out to hug me. The mood was jovial, with the usual cookies there. I wanted to connect with the other moms -- I suspect this would be nice for all of us. I've been thinking of putting together a parents'/caregivers/ network and it looks like we're approaching the time for it. There was a person who works with a national talk show, a vivacious black-haired young woman from Fairport.
Lauren told Nadine she should put some "meat on her bones" and said she'd love to give Nadine some of her "meat" (fat); I said I'd like to do the same. We talked of giving Nadine "rich" food and of me trying to avoid eating too much of it.
On a serious note, Nadine was looking thin again, and it was worrying me -- she was in excellent physical shape strength-wise, but the weight loss wasn't abating.
QUOTE FROM NADINE ON A LONG NIGHT WALK
Nadine wanted to take a long walk outside, and it was pleasant walking outside together on the cold-cold night.
QUOTE: Me: Can you tell it's slippery.
She: I don't know. I wasn't trying to slip.
THE NIGHT
Nadine burst into tears for no apparent reason.
BANDAGES
The bandage was entirely off again! I told her it mattered, and she finally let me put it back on. I was so flustered that I dropped the saline syringe, and had to use a second one. Me and that saline. It stays sterile, it stays safe, but I've lost count of the messes I've made.
AND FINALLY THE BANDAGES ARE OVER
Shortly after that, the wound was obviously healed,and the bandages came off for goo. Yay!!!!!!!!!
The day before that, she'd had a quick transfusion. It's very rare that she has a quick transfusion -- usually she's in there a long time. That one, though, just worked. Why don't they all go so smoothly? I'm not going to answer that question.
There was a joyful reunion between the two girls, after which they trotted off and renewed themselves. As for me, I visited with Sue, dried the dishes while she washed them, and helped her peel and chop butternut squash at the table, which is the kind of interaction I just love.
I drove off into the cold night and had a lovely night alone, knowing Nadine was in excellent hands. I had a nice pracice session on the piano, then sat on the couch, realized how exhausted I was, and went to bed early.
The next day (Sunday January 19th), I got up still feeling tired.
Nadine arrived looking happy, and then things deteriorated. She announced she'd forgotten to take one of her important medicines. And then she forgot it again, and didn't get it until after her Rochester Philharmonic Youth Orchestra rehearsal.
To make matters worse, she had gauze rather than the Allevan pad on the wound site -- I was still worried about it getting infected after all these months and months of care, when it was just about to be healed. She in turn was tired of wearing those bandages, and refused change it, insisting it was fine. I said I wasn't taking her to her rehearsal until the bandage was changed. She blew up at me, and finally she very grudgingly let me change the bandage. We were both tense, which is a perfect way to bungle things -- I somehow squirted saline all over the place, drenching the area around Nadine and infuriating her (at least I got it where it belonged, right? }
When I questioned Nadine about the missed medication, she said something about being self-conscious with all those medicines at a friend's house.
WE BOTH NEEDED SPACE -- AND WE HUGGED
Nadine said she was looking forward to spending a night away from me. I said that I was looking forward to it as well. Suddenly the tension dissipated as Nadine looked knowingly and lovingly at me. We hugged.
_______
Nadine told me that being inside the house has felt uncomfortable and confining, and that she misses being "on the move". she said she'd like to open the windows, but sadly we can't have that in the middle of the winter. She said that driving to Sylvia and Claire's place was the longest drive she'd taken in a while, and that she misses traveling like we used to do.
Nadine was late to rehearsal, and I was late to the pleasantly crowded neighborhood "open house" party across the street that I'd been given an invitation to. I went, and felt like I was in a different world of designer furniture and up-and-coming (although congenial) young professionals, although I loved the book on the desk about the joys of handwritten notes. It reminded me that I would like to write some. There was amazing food, and a group came together and sang "Chestnuts Roasting on an Open Fire", and then "Let It Snow", two songs I confess are real favorites. I felt reassured that somehow some relics of what might have been a more peaceful past still thrived.
PARTIES AND PHOTO-SHOOT WITH CARRIE
Nadine, Claire, and Sylvia were going to do a "photo shoot" at Carrie's studio the next day, and prepared some stuff for it. Three friends with their pajamas at a photo-shoot, oh my.
Nadine's youth orchestra also had a party that day, which was much fun for her. and her friend Louisa invited her to be her roommate on the orchestra's April tour to Quebec.
Nadine, Claire and Sylvia had a "photo-shoot" with Carrie and Carrie's studio, with the girls driving in on their own; I had to get Nadine's medicines to the studio to take to Sue's house, as Jessie, the visiting nurse, was going over there to do blood tests. When I met them over there to deliver meds, they were having a fine time, including mixing up socks.
As for me, I did a bunch of work during the day, and also had frustrations -- the first few days alone, and I had so many real and perceived chores. It took over an hour on Mondahy to find the pringer didn't work -- all I was trying to do was communicate with the Hinsdale district about Nadine's paperwork, and it turned into a morning ordeal which led to me emailing the letter to Fedex-Kinko's to print up. I also wanted to cactch up on myh blog" as I had felt so bad about being behind on writing. I did it "with feeling" and was amazed at what I could remember. I also practiced hard at the piano and actually regained some lost technique. A day alone to catch up was nice.
FIRST DAY OF WINTER PASSED FORGOTTEN
I noticed that I'd let the Solstice slip by. So many other things were going on, that my "traditional" points that I notice were almost forgotten. The official beginning of winter. When Nadine was little, I used to mark it by making cut-out "snowflakes" with Nadine and tossing or dropping them so they floated through the air to the floor.
BLOOD CHECKING FOR CHEMO, and the Day
Jessie checked Nadine's blood again, but there was no result there. This was going to be BIG-BIG CHemo, complete with Intrathecal chemo plus dox-dex-vincristine. Because her counts had been 1000 the last week (amazing!), I was pretty sure she'd get it, but it would have been nice to know, as she couldn't eat early in the morning if she got it.
I got a phone call -- Nadine had forgotten her Prilosec for her reflux, and had a tummy ache, so I hotfooted it to Sue and Sylvia's house early, where Nadine was staying, and bought some Prilosec on the way. So no more practicing piano for me. I visited and took Nadine home before the TLC meeting.
Nadine was hungry again -- we went to Panera on the way home and Nadine got her beloved soup -- we sat togehter, with me ordering black bean soup and she ordering cream of chicken soup -- I just wanted her to EAT. She had samplings of each soup but had a total of less than I wanted her to have.
TLC MEETING
On Tuesday December 22nd there was another TLC meeting, which I thought would be introspective, but there were happy hugging girls at it, one coming out to hug me. The mood was jovial, with the usual cookies there. I wanted to connect with the other moms -- I suspect this would be nice for all of us. I've been thinking of putting together a parents'/caregivers/ network and it looks like we're approaching the time for it. There was a person who works with a national talk show, a vivacious black-haired young woman from Fairport.
Lauren told Nadine she should put some "meat on her bones" and said she'd love to give Nadine some of her "meat" (fat); I said I'd like to do the same. We talked of giving Nadine "rich" food and of me trying to avoid eating too much of it.
On a serious note, Nadine was looking thin again, and it was worrying me -- she was in excellent physical shape strength-wise, but the weight loss wasn't abating.
QUOTE FROM NADINE ON A LONG NIGHT WALK
Nadine wanted to take a long walk outside, and it was pleasant walking outside together on the cold-cold night.
QUOTE: Me: Can you tell it's slippery.
She: I don't know. I wasn't trying to slip.
THE NIGHT
Nadine burst into tears for no apparent reason.
BANDAGES
The bandage was entirely off again! I told her it mattered, and she finally let me put it back on. I was so flustered that I dropped the saline syringe, and had to use a second one. Me and that saline. It stays sterile, it stays safe, but I've lost count of the messes I've made.
AND FINALLY THE BANDAGES ARE OVER
Shortly after that, the wound was obviously healed,and the bandages came off for goo. Yay!!!!!!!!!
Monday, January 18, 2010
Nadine's Turn to Blow Up, We Reconcile Again.
Nadine had a wonderful visit with her friend Sylvia, who was home for college. After she came home the next day (Sunday Dec 20th), it turned out that she hadn't taken one of her important medicines in the morning. She told me she was self-conscious about taking medicines over there -- this surprised me as everyone there knows her well. Then, Nadine went to the orchestra rehearsal, and forgot again to take the medicine.
She also came home with gauze rather than the Allevan pad on her wound site. Yes it was almost healed, or maybe even all healed, but Beth Schempp, the wound care specialist, had said to leave it on. I told Nadine to please change it, and she went into the bathroom and changed the gauze to more gauze instead of the Allevan.
I asked myself if this worth risking a fight over, decided yes, and told her I wasn't driving the car until she put the Allevan pad on. I just couldn't in good conscience risk the wound getting infected after 5 months of taking care of it.
She blew up at me, big time -- raising her voice, the whole "nine yards".
Finally she allowed me to change the bandage -- the interaction turned into a miserable operation, even though it was a lot easier than it used to be when we had to swab out the mess. I tried to rinse the wound with saline, and it squirted all over the place. Nadine had left the proper tape at Sylvia's house, so we had to use something else.
I guess Nadine and I are "tied" now -- each of us had one "blow up".
She also came home with gauze rather than the Allevan pad on her wound site. Yes it was almost healed, or maybe even all healed, but Beth Schempp, the wound care specialist, had said to leave it on. I told Nadine to please change it, and she went into the bathroom and changed the gauze to more gauze instead of the Allevan.
I asked myself if this worth risking a fight over, decided yes, and told her I wasn't driving the car until she put the Allevan pad on. I just couldn't in good conscience risk the wound getting infected after 5 months of taking care of it.
She blew up at me, big time -- raising her voice, the whole "nine yards".
Finally she allowed me to change the bandage -- the interaction turned into a miserable operation, even though it was a lot easier than it used to be when we had to swab out the mess. I tried to rinse the wound with saline, and it squirted all over the place. Nadine had left the proper tape at Sylvia's house, so we had to use something else.
I guess Nadine and I are "tied" now -- each of us had one "blow up".
Sunday, January 17, 2010
A Cranky Evening -- Mom Blows It And Blows Up -- Later, a Nice Party
A CRANKY EVENING, MOM BLOWS IT AND BLOWS UP!
My Friday evening mess-up started when I decided to squeeze in some errands before going to the Thurstons' potluck and music party, to which I'd been looking forward. I had wanted to get some piano practice in before we went. When I came back, Nadine was using the computer, which I thought I needed. I sulked; I was in a Mood. A succession of other things, probably minor, went wrong; I was tense, and Nadine seemed agitated as well, and perhaps said a few choice words of comment. I finally blew up at her. -- I mean, I even raised my voice. I felt like I hated myself and yet the pent-up tension got the better of me.
I finally got the "lid" back onto myself and stopped. Nadine looked at me with concern and told me she loved me. She obviously felt compassion (although she hadn't at first), as if she knew I didn't want to be reacting the way I did. It was a moving moment as we looked at each other.
I stood there for a while, and then we got ready for the dinner party at the Thurston house -- I took a shower, Nadine got ready, and off we went.
A WONDERFUL PARTY ANYWAY
It was a wonderful party -- the Thurstons plus Alice with Daphne and Alexander, and another family; super company, super dinner at their long table, the first time we'd been at the Thurston house since we had stayed with them. Hassler made super spice cookies; Margaret made cobbler; all the kids made whipped cream, taking turns gleefully using the whisk (including Nadine). There was fun talk. Later on the kids visited and played hide and seek -- the house was excellent for it. And they all did some fiddling together as well.
After we came home, we both were a little "off" again, but we went to bed after I took my vitamins and she took her medicines. She snuggled into bed with me for a while, and after that I couldn't rest.
Soon afterwards, she snuggled with me on the downstairs loveseat, and we all were relaxed again.
My Friday evening mess-up started when I decided to squeeze in some errands before going to the Thurstons' potluck and music party, to which I'd been looking forward. I had wanted to get some piano practice in before we went. When I came back, Nadine was using the computer, which I thought I needed. I sulked; I was in a Mood. A succession of other things, probably minor, went wrong; I was tense, and Nadine seemed agitated as well, and perhaps said a few choice words of comment. I finally blew up at her. -- I mean, I even raised my voice. I felt like I hated myself and yet the pent-up tension got the better of me.
I finally got the "lid" back onto myself and stopped. Nadine looked at me with concern and told me she loved me. She obviously felt compassion (although she hadn't at first), as if she knew I didn't want to be reacting the way I did. It was a moving moment as we looked at each other.
I stood there for a while, and then we got ready for the dinner party at the Thurston house -- I took a shower, Nadine got ready, and off we went.
A WONDERFUL PARTY ANYWAY
It was a wonderful party -- the Thurstons plus Alice with Daphne and Alexander, and another family; super company, super dinner at their long table, the first time we'd been at the Thurston house since we had stayed with them. Hassler made super spice cookies; Margaret made cobbler; all the kids made whipped cream, taking turns gleefully using the whisk (including Nadine). There was fun talk. Later on the kids visited and played hide and seek -- the house was excellent for it. And they all did some fiddling together as well.
After we came home, we both were a little "off" again, but we went to bed after I took my vitamins and she took her medicines. She snuggled into bed with me for a while, and after that I couldn't rest.
Soon afterwards, she snuggled with me on the downstairs loveseat, and we all were relaxed again.
Winning the Concerto Competition
Nadine and her buddy Victor won the Rochester Philharmonic Youth Orchestra Concerto Competition on Dec. 10th. This means they'll get to play the Cimerosa Concerto for Two Flutes at Eastman Theater (Kodak Hall) in front of a full orchestra on March 7th. Nadine will also get to wear a full-length gown for the event.
As background, Nadine and her buddy Victor had decided to enter the Rochester Philharmonic Youth Orchestra Concerto Competition with a double flute concerto -- they didn't want to compete with each other. This had been decided well before Nadine was diagnosed with leukemia. The chose the gorgeous classical-era Double Concerto for Two Flutes by Cimerosa, and had begun practicing while Nadine had been staying at Ronald MacDonald House for a few days. His mom and I had gleefully watched from the "mezzanine" balcony at the house.
They had found Joe Werner, the RPO pianist and a wonderful accompanist and person, to accompany them. The very first rehearsal had been jeopardized by Nadine being delayed at clinic during a chemo treatment (sigh), but it had been scheduled later the same evening and sounded stellar.
Victor and Nadine also did numerous fun and busy practices at our house. They even did some shenanigans like playing single-flute pieces with one blowing into the mouthpiece while the other did the fingering, which was very humorous to watch.
TUESDAY DECEMBER 8th -- REHEARSAL FOR CONCERTO COMPETITION
That night Nadine and Victor had their FINAL REHEARSAL with accompanist Joe for the Concerto Competition.
Joe managed to book the bit Hochstein Performance Hall for the rehearsal, and the two of them were magnificent!! I asked to video and also sound-record it, which I was granted, and this was a perfect opportunity. The music was beautiful, and Nadine and Victor were amazingly coordinated together, and obviously were having fun, and Joe was having fun too. Joe the accompanist said that if they didn't win, there was something wrong. They played through it once, then did details, and then did the whole thing again and I did the recording; they were gracious when it took a while for me to get the recording device on.
After Joe left, the two of them did a few details and then sprawled out on the stage to work on their required essay. Happily, I had found out the essay wasn't part of the judging, but it was still due (by email) that night. Victor had done the draft; Nadine had made additions; the two of them looked comfy and I left them to it and went to the lounge, where I ran into Ming-Fong, Victor's mom, with whom I chatted and joked, including about what the two would wear. They wanted "casual"; we thought that Victor should wear a suit and Nadine should wear a dress. The next day, Sophia informed them both that she wanted them to wear suit and dress, and her word was law.
THURSDAY DECEMBER 10TH --CONCERTO COMPETITION DAY AND SNOW SNOW SNOW
It was super-snow, and Nadine was starting to feel yucky -- after all, it was Day 10 of the chemo cycle, so this wasn't unexpected. She warmed up a little and mostly took it easy.
We left the house early -- I had to wipe snow off the car, I wanted to find a nice practice room at Eastman for all of us. Joe was coming around 5; their slot was 6:15. Left later than desired, found a decent parking spot right across the street from Eastman, dashed in with Nadine, and raced upstairs -- and I found a practice room with a grand piano and no lock on the door. Joe the accompanist arrived early and I ushered him and Nadine to the room, then waited downstairs for Victor, whose car had gotten stuck in snowy-road traffic, but he made it a few minutes later and they practiced.
Susan Basu (the manager) and David Harmon (the conductor) were downstairs; there were the usual greetings. Eventually Nadine, Victor and Joe came downstairs, Nadine and Victor got suitably dressed, and they were ready. Nadine had on her wonderful sleek silky brown knee-length dress with the transparent and brown overlay that she'd gotten earlier.
The time arrived. I stationed myself outside the door and listened -- they sounded wonderful! David Harmon was listening from outside too, and said they sounded like a "well-oiled machine". He wasn't judging, and it was still nice to hear his comment.
Unknown to Nadine, Bonita Boyd, the renouned flutist and collegiate professor at Eastman, was one of the judges -- Nadine might have been too nervous to recognize her. Nadine had been slated to study with her over the summer at Aria Institute at Williams College before leukemia ended that -- Dr. Boyd still plans to give her one or two lessons to compensate.
After they left, Nadine said Victor played well and that she was off pitch or something, and we left. It was over. Finished. It felt like a victory, no matter what happened.
FRIDAY DECEMBER 11TH -- WINNING PHONE CALL!!!! THEY WON!!!!
In Friday morning -- it was Susan Basu, the orchestra manager. "CONGRATULATIONS", she said. They had won.
I handed the phone to Nadine, who was in the kitchen, without telling her. Nadine got to hear it. EXCITEMENT!!!
What an event!
As background, Nadine and her buddy Victor had decided to enter the Rochester Philharmonic Youth Orchestra Concerto Competition with a double flute concerto -- they didn't want to compete with each other. This had been decided well before Nadine was diagnosed with leukemia. The chose the gorgeous classical-era Double Concerto for Two Flutes by Cimerosa, and had begun practicing while Nadine had been staying at Ronald MacDonald House for a few days. His mom and I had gleefully watched from the "mezzanine" balcony at the house.
They had found Joe Werner, the RPO pianist and a wonderful accompanist and person, to accompany them. The very first rehearsal had been jeopardized by Nadine being delayed at clinic during a chemo treatment (sigh), but it had been scheduled later the same evening and sounded stellar.
Victor and Nadine also did numerous fun and busy practices at our house. They even did some shenanigans like playing single-flute pieces with one blowing into the mouthpiece while the other did the fingering, which was very humorous to watch.
TUESDAY DECEMBER 8th -- REHEARSAL FOR CONCERTO COMPETITION
That night Nadine and Victor had their FINAL REHEARSAL with accompanist Joe for the Concerto Competition.
Joe managed to book the bit Hochstein Performance Hall for the rehearsal, and the two of them were magnificent!! I asked to video and also sound-record it, which I was granted, and this was a perfect opportunity. The music was beautiful, and Nadine and Victor were amazingly coordinated together, and obviously were having fun, and Joe was having fun too. Joe the accompanist said that if they didn't win, there was something wrong. They played through it once, then did details, and then did the whole thing again and I did the recording; they were gracious when it took a while for me to get the recording device on.
After Joe left, the two of them did a few details and then sprawled out on the stage to work on their required essay. Happily, I had found out the essay wasn't part of the judging, but it was still due (by email) that night. Victor had done the draft; Nadine had made additions; the two of them looked comfy and I left them to it and went to the lounge, where I ran into Ming-Fong, Victor's mom, with whom I chatted and joked, including about what the two would wear. They wanted "casual"; we thought that Victor should wear a suit and Nadine should wear a dress. The next day, Sophia informed them both that she wanted them to wear suit and dress, and her word was law.
THURSDAY DECEMBER 10TH --CONCERTO COMPETITION DAY AND SNOW SNOW SNOW
It was super-snow, and Nadine was starting to feel yucky -- after all, it was Day 10 of the chemo cycle, so this wasn't unexpected. She warmed up a little and mostly took it easy.
We left the house early -- I had to wipe snow off the car, I wanted to find a nice practice room at Eastman for all of us. Joe was coming around 5; their slot was 6:15. Left later than desired, found a decent parking spot right across the street from Eastman, dashed in with Nadine, and raced upstairs -- and I found a practice room with a grand piano and no lock on the door. Joe the accompanist arrived early and I ushered him and Nadine to the room, then waited downstairs for Victor, whose car had gotten stuck in snowy-road traffic, but he made it a few minutes later and they practiced.
Susan Basu (the manager) and David Harmon (the conductor) were downstairs; there were the usual greetings. Eventually Nadine, Victor and Joe came downstairs, Nadine and Victor got suitably dressed, and they were ready. Nadine had on her wonderful sleek silky brown knee-length dress with the transparent and brown overlay that she'd gotten earlier.
The time arrived. I stationed myself outside the door and listened -- they sounded wonderful! David Harmon was listening from outside too, and said they sounded like a "well-oiled machine". He wasn't judging, and it was still nice to hear his comment.
Unknown to Nadine, Bonita Boyd, the renouned flutist and collegiate professor at Eastman, was one of the judges -- Nadine might have been too nervous to recognize her. Nadine had been slated to study with her over the summer at Aria Institute at Williams College before leukemia ended that -- Dr. Boyd still plans to give her one or two lessons to compensate.
After they left, Nadine said Victor played well and that she was off pitch or something, and we left. It was over. Finished. It felt like a victory, no matter what happened.
FRIDAY DECEMBER 11TH -- WINNING PHONE CALL!!!! THEY WON!!!!
In Friday morning -- it was Susan Basu, the orchestra manager. "CONGRATULATIONS", she said. They had won.
I handed the phone to Nadine, who was in the kitchen, without telling her. Nadine got to hear it. EXCITEMENT!!!
What an event!
Saturday, January 9, 2010
All State Orchestra Week-End For Nadine
DECEMBER 3rd -- ALLSTATE MUSIC WEEK-END -- A GO!
Off to All-State for Nadine! I felt better than the day before-- I can say antibiotics rule. All-State was at the Radisson Riverside Hotel in downtown Rochester, and "kids" came from all over the state. It was an honor for Nadine to have been chosen. She had placed into the Symphony Orchestra.
When we got the "forms" to fill out after she was accepted, of course there was a space for "medical" issues. I wrote one word -- "leukemia" -- and under medicines I wrote "assorted". I got a call from the head chaperone and thought Nadine might be disqualified, but instead the very nice man said they wanted her to be able to go and wanted to know how they could help! I said it would help if I could have a room at the hotel so she could rest and so I could take care of her if needed, and they got me one! They also were solicitous about just about everything.
As Nadine's "counts" were excellent that week-end, she had no medical restrictions other than common sense!
When we arrived in the bustling hotel, Nadine wanted to wait on line with everyone; however, the organizers had insisted she go to the front, and she was greeted very warmly. I met the head chaperones, whom I'd spoken with earlier. The judge who had recommended her after her audition was there; he very happy to see her (and me too). Apparently he'd been so impressed with her that a lot of people knew of her.
As for me, I got a wonderful week-end too -- I got to eat with the chaperones, to chat with music teachers and various music folks, to watch rehearsals, and enjoy the ambiance, which I did. The buffet breakfasts were delicious. It was a mini-vacation, and I was making the most of it.
Nadine had pictures taken at the "top of the escalator" near the chandelier with the other Cattaraugus County attendees (about 6 of them).
We got to see Ruth Fuller, the wonderful Hinsdale music teacher, band leader/conductor, and flutist, who has been so warm and supportive to Nadine from when she first met her about 5 years ago. (Okay Ruth, I don't care if you see this -- you know how much I think of you). We got to see other music teachers as well.
I enjoyed watching kids happily bustling back and forth up and down the escalator with the fabulous chandelier over it. :I loved watching the sparkly lights and lighted snowflakes and river and the moving lights of vehicles on Main Street from the glassed-in upper walkway between the hotel and conference center. The unreal glamour of a hotel in the midst of the rest of life felt comforting. There was a beautiful gingerbread house on exhibit, a reproduction of Eastman Theater in the 20's festooned with bright-colored candies. People scooted about the hotel in wonderful moods. Little jam sessions happened, especially around one of the pianos; kids singing; piano in varieties of styles.
I was installed in a room down the hall from Nadine.
The first night, I decided to go to bed early, enjoying the huge king bed with snow-white comforter, adjustable firmness, and zillions of pillows. If I had to get lots of rest, this was the place to do it.
First, I brought supplies to Nadine, as she gets hungry at night -- peanut butter, jelly, bread I'd procured from the desk clerk, more hand sanitizer, etc., and left it in a cooler outside her room door, along with a list of her meds.
The next day I enjoyed rehearsals, including hers. The symphony orchestra rehearsed in the Hyatt Hotel, an impressive walk including walkways first to the Conference Center, then to the Hyatt, then finding the room. About a hundred musicians with every possibly symphony instrument. Crowded room, small bald-ish conductor. Joan Towers, the composer who had created one of the pieces, "For The Uncommon Woman", was talking about her work, inviting comments and suggestions. The piece itself was pretty brassy and clanked a lot-- lots of percussion. The other piece, Respighi's "Pines of Rome", was massive and of course gorgeous. I sat near the big brass and enjoyed watching and photographing contours and reflections in the huge golden "bells" of the trombones and tuba.
Nadine had two excellent room-mates, and loved wandering around with her buddies. She also managed to find time to sneak off and practice the Cimerosa concerto with Victor. Friday, I also had to do a shopping expedition for supplies for Nadine.
Friday night Nadine joined a rock and roll dance,complete with professional DJ, loud music, disco lights flashing in the darkened room, and enormous masses of kids dancing, shouting and waving arms in the large hall -- a perfect event. I had gone in and enjoyed the scene, even danced a little with one of the other chaperones. I noticed Nadine was gyrating amongst the group, and succeeded in staying out of her way and hopefully even off her "radar screen". I was impressed that the organizers honored this side of the kids' lives.
Of meaning to me, I got to chat with a music teacher who told me she'd gotten into music teaching after her kids were grown, and she encouraged me to go ahead and study music myself if that was what I wanted. I needed that. I also enjoyed chatting with other teachers including two from Hinsdale.
On Saturday I visited various rehearsals, especially liking the String Orchestra, which did eclectic stuff including a piece by Perkins that included "slap" bass, and a Mozart divertimento or two. The conductor was amazing -- I liked him a lot better than Nadine's. It turns out he teaches at the University of Michigan, and after a wonderful conversation with him, I was quite impressed about Michigan for Nadine. He said to be sure to visit him with Nadine if we go to visit -- I'm sure we will. Later on, the two orchestras did a "rehearsal exchange" where each got to see a piece of the others' repertoire.
I explored the massive conference room, looking at booths with possible colleges for Nadine although I was dismayed that most were colleges to train teachers (although that's valid too); talked with folks from Ithaca College and Crane School, and hungrily sampled pizza from a vendor of foods for fund-raisers.
That evening Barry arrived, and we both got to her evening rehearsal. And after that, Nadine went upstairs; I stayed down a while, and watched an amazing jazz session by kids on saxophone, trumpet, piano, and probably others -- one of the best I've heard. I also passed a room with kids swing-dancing. I checked out the rock and roll dance again -- it ended with an announcement of curfew time. I left and saw the jazz jam still going on -- the swing dancers had found them and were out dancing to them. Eventually everyone scurried up, including me. Nadine was still independent and happy.
On Sunday was the Big Performance of the Symphony Orchestra in Eastman Theater. Nadine of course went with her group; Barry and I drove over, and I found us excellent seats in the second row center mezzanine. It was a super-AllState, crowded and fun. Nadine came out with her orchestra and they sounded spectacular, all of them!!! What a treat to see her up there in the big theater with all those other excellent musicians.
Afterwards, Nadine came down and wasn't sure if she'd have a bus back to the hotel; I stayed with her until the bus left, savoring the sight of those wonderful kids bustling around again. After that, I couldn't find Barry-- I waited and waited. One of the chaperones introduced me to the director of All-State, who was down there -- I think she'd known about Nadine too, and everyone seemed pleased she (and I) had had such a nice time. Barry was nowhere in sight -- and he had the car. Finally I picked up my stuff and trudged back the quarter to half mile or so to the hotel in the cold -- when almost there, I saw his car, and raced across the street and got in.
We all connected with each other upstairs, Barry took Nadine to the Rochester Philharmonic Youth Orchestra rehearsal (she was still full of energy), and I finished checking out of the hotel, and that was it.
A week-end well done, a Nadine who had been in excellent shape, and some beautiful concerts.
Off to All-State for Nadine! I felt better than the day before-- I can say antibiotics rule. All-State was at the Radisson Riverside Hotel in downtown Rochester, and "kids" came from all over the state. It was an honor for Nadine to have been chosen. She had placed into the Symphony Orchestra.
When we got the "forms" to fill out after she was accepted, of course there was a space for "medical" issues. I wrote one word -- "leukemia" -- and under medicines I wrote "assorted". I got a call from the head chaperone and thought Nadine might be disqualified, but instead the very nice man said they wanted her to be able to go and wanted to know how they could help! I said it would help if I could have a room at the hotel so she could rest and so I could take care of her if needed, and they got me one! They also were solicitous about just about everything.
As Nadine's "counts" were excellent that week-end, she had no medical restrictions other than common sense!
When we arrived in the bustling hotel, Nadine wanted to wait on line with everyone; however, the organizers had insisted she go to the front, and she was greeted very warmly. I met the head chaperones, whom I'd spoken with earlier. The judge who had recommended her after her audition was there; he very happy to see her (and me too). Apparently he'd been so impressed with her that a lot of people knew of her.
As for me, I got a wonderful week-end too -- I got to eat with the chaperones, to chat with music teachers and various music folks, to watch rehearsals, and enjoy the ambiance, which I did. The buffet breakfasts were delicious. It was a mini-vacation, and I was making the most of it.
Nadine had pictures taken at the "top of the escalator" near the chandelier with the other Cattaraugus County attendees (about 6 of them).
We got to see Ruth Fuller, the wonderful Hinsdale music teacher, band leader/conductor, and flutist, who has been so warm and supportive to Nadine from when she first met her about 5 years ago. (Okay Ruth, I don't care if you see this -- you know how much I think of you). We got to see other music teachers as well.
I enjoyed watching kids happily bustling back and forth up and down the escalator with the fabulous chandelier over it. :I loved watching the sparkly lights and lighted snowflakes and river and the moving lights of vehicles on Main Street from the glassed-in upper walkway between the hotel and conference center. The unreal glamour of a hotel in the midst of the rest of life felt comforting. There was a beautiful gingerbread house on exhibit, a reproduction of Eastman Theater in the 20's festooned with bright-colored candies. People scooted about the hotel in wonderful moods. Little jam sessions happened, especially around one of the pianos; kids singing; piano in varieties of styles.
I was installed in a room down the hall from Nadine.
The first night, I decided to go to bed early, enjoying the huge king bed with snow-white comforter, adjustable firmness, and zillions of pillows. If I had to get lots of rest, this was the place to do it.
First, I brought supplies to Nadine, as she gets hungry at night -- peanut butter, jelly, bread I'd procured from the desk clerk, more hand sanitizer, etc., and left it in a cooler outside her room door, along with a list of her meds.
The next day I enjoyed rehearsals, including hers. The symphony orchestra rehearsed in the Hyatt Hotel, an impressive walk including walkways first to the Conference Center, then to the Hyatt, then finding the room. About a hundred musicians with every possibly symphony instrument. Crowded room, small bald-ish conductor. Joan Towers, the composer who had created one of the pieces, "For The Uncommon Woman", was talking about her work, inviting comments and suggestions. The piece itself was pretty brassy and clanked a lot-- lots of percussion. The other piece, Respighi's "Pines of Rome", was massive and of course gorgeous. I sat near the big brass and enjoyed watching and photographing contours and reflections in the huge golden "bells" of the trombones and tuba.
Nadine had two excellent room-mates, and loved wandering around with her buddies. She also managed to find time to sneak off and practice the Cimerosa concerto with Victor. Friday, I also had to do a shopping expedition for supplies for Nadine.
Friday night Nadine joined a rock and roll dance,complete with professional DJ, loud music, disco lights flashing in the darkened room, and enormous masses of kids dancing, shouting and waving arms in the large hall -- a perfect event. I had gone in and enjoyed the scene, even danced a little with one of the other chaperones. I noticed Nadine was gyrating amongst the group, and succeeded in staying out of her way and hopefully even off her "radar screen". I was impressed that the organizers honored this side of the kids' lives.
Of meaning to me, I got to chat with a music teacher who told me she'd gotten into music teaching after her kids were grown, and she encouraged me to go ahead and study music myself if that was what I wanted. I needed that. I also enjoyed chatting with other teachers including two from Hinsdale.
On Saturday I visited various rehearsals, especially liking the String Orchestra, which did eclectic stuff including a piece by Perkins that included "slap" bass, and a Mozart divertimento or two. The conductor was amazing -- I liked him a lot better than Nadine's. It turns out he teaches at the University of Michigan, and after a wonderful conversation with him, I was quite impressed about Michigan for Nadine. He said to be sure to visit him with Nadine if we go to visit -- I'm sure we will. Later on, the two orchestras did a "rehearsal exchange" where each got to see a piece of the others' repertoire.
I explored the massive conference room, looking at booths with possible colleges for Nadine although I was dismayed that most were colleges to train teachers (although that's valid too); talked with folks from Ithaca College and Crane School, and hungrily sampled pizza from a vendor of foods for fund-raisers.
That evening Barry arrived, and we both got to her evening rehearsal. And after that, Nadine went upstairs; I stayed down a while, and watched an amazing jazz session by kids on saxophone, trumpet, piano, and probably others -- one of the best I've heard. I also passed a room with kids swing-dancing. I checked out the rock and roll dance again -- it ended with an announcement of curfew time. I left and saw the jazz jam still going on -- the swing dancers had found them and were out dancing to them. Eventually everyone scurried up, including me. Nadine was still independent and happy.
On Sunday was the Big Performance of the Symphony Orchestra in Eastman Theater. Nadine of course went with her group; Barry and I drove over, and I found us excellent seats in the second row center mezzanine. It was a super-AllState, crowded and fun. Nadine came out with her orchestra and they sounded spectacular, all of them!!! What a treat to see her up there in the big theater with all those other excellent musicians.
Afterwards, Nadine came down and wasn't sure if she'd have a bus back to the hotel; I stayed with her until the bus left, savoring the sight of those wonderful kids bustling around again. After that, I couldn't find Barry-- I waited and waited. One of the chaperones introduced me to the director of All-State, who was down there -- I think she'd known about Nadine too, and everyone seemed pleased she (and I) had had such a nice time. Barry was nowhere in sight -- and he had the car. Finally I picked up my stuff and trudged back the quarter to half mile or so to the hotel in the cold -- when almost there, I saw his car, and raced across the street and got in.
We all connected with each other upstairs, Barry took Nadine to the Rochester Philharmonic Youth Orchestra rehearsal (she was still full of energy), and I finished checking out of the hotel, and that was it.
A week-end well done, a Nadine who had been in excellent shape, and some beautiful concerts.
Tuesday, January 5, 2010
Thanksgiving -- A Wonderful Family Week-End
Thanksgiving. Thanks given. Giving thanks.
Thanks given. Nadine was in perfect physical shape in every way, hematocrit of 35; the whole family was here, Erek, Kate, Barry, Nadine, Raymi and me. Happy cooking, happy eating, happy socializing, happy games, happy walks, even happy contra dancing. I was SO glad the boys could be with her when she was feeling so perfectly well, as last time they'd visited she'd been having a hard time.
In my journal I wrote a soppy note about dishes, dirtied and washed and dirtied and washed over and over as a symbol of food enjoyed, and an expression of caring how it is served. I drew a heart underneath the journal entry.
I wonder if I'll have this new attitude of gratefulness when I wash the pile of dishes now in the sink....
WEDNESDAY
On Wednesday Raymi arrived first (around 1PM), tall, dark-haired, exuberant, and tie-dyed-shirted. We all immediately went to clinic together for Nadine's asparaginase, and the visit happily went routinely and fast. Ah, if all clinic visits could be like this. Raymi looked wiped-out in the room, understandable as he'd driven from Pittsburgh. After clinic we were so ravenous that we went straight to Great Harvest for sandwiches before going home.
Raymi has his hair short now, done with a delay after Nadine's diagnosis. I dreaded seeing him without his "trademark" gorgeous long thick dark hair, but he looked absolutely wonderful and there there was no danger of losing his uniquely striking appearance. The thick mass of shorter hair looked very good.
Raymi brought an AMAZING gift for Nadine, in a 5-foot-long box that delightfully puzzled her. It was a "walking-stick" flute, an approximately 5-foot-long narrow brown, slightly curved wood. What a gift! She picked it up and instantly created gorgeous music on it -- it had a sweet, rich sound. Plus she looked adorable, my slender girl on the couch with that huge long flute delicately balanced horizontally in front of her lips. It was obvious that Raymi relished getting this present for her.
Barry arrived at 7PM with the organic free-range turkey I'd ordered from Pierre, the local farmer. I wasn't planning to do do much cooking that night -- I was gearing up for the next day, Thanksgiving, when we were going to have homemade cranberry sauce, sweet potato pies, mashed potatoes, gravy, stuffing, and of course the turkey. I had to get the turkey "brined" and had bought a bag for the purpose.
Getting the turkey plus brine into the bag was a comically clumsy operation that ended amazingly successfully with the squishy bulgy bag of brine and turkey in the fridge with no appreciable puddle.
Nadine's flute partner Victor arrived, and the two practiced the Cimarosa concerto again.
We were all hungry and getting so cranky that I relented on my "no-cook" evening and prepared a stir-fry with noodles, after which we all felt better. I was pretty tired, we all were, and I finally went to bed after I made up a bed and welcome note for Erek and Kate, who were arriving late.
Then I didn't sleep; Kate and Erek walked in while I was puttering around downstairs in my nightgown. I greeted them and teetered back up to bed.
THURSDAY -- FOOD DAY
The next day was Thanksgiving Food Day. -- Barry, Erek, Raymi and Nadine started up a game, but I knew the turkey had to tackled even if I wanted to play. They were fun to watch.
Kate came into the kitchen with me and we "did" the turkey together. I "zested" the lemon rind and Kate chopped the garlic; we massaged the turkey (literally) and Kate and I slid our hands under the skin and placed zested lemon peel, chopped garlic, and lemon slices all the way underneath it. Finally we hoisted it into the oven.
I'd requested a turkey thermometer from Barry, but he'd brought a candy thermometer instead, so I had to face Wegman's on Thanksgiving Day. After I got back, someone left the meat thermometer in the turkey and the plastic top melted. I made cranberry-orange sauce, Nadine worked on the stuffing I think, and Kate prepared mashed potatoes with cream.
Raymi went out for a run, and Barry and Erek joined. I made it for about a block and a half before puff-huffing back.
Dinner was magnificent! It was everything that anyone could have hoped for. Raymi had said he'd never had homecooked turkey that he'd liked -- this one was excellent. A full table with cranberry sauce, mashed potatoes, beautiful turkey, stuffing, gravy. We all held hands -- it was thanks to the max.
That night I raked leaves. It took about 2 hours, but it felt great moving and heaving stuff.
FRIDAY NOVEMBER 27th
Another glorious day. A morning of visiting together, a breakfast of pnacakes, and delicious leftovers for lunch and dinner.
About 10AM Nadiine's flute teacher Sophia arrived to coach Nadine and Victor on the Cimarosa concerto. Sophia was in a vivacious mood, sounding almost giddy; they played SO well. It was a party mood, with conversation as well as music. Sophia did an animated job conducting the soaring music, and the music SOARED.
A CONTRA DANCE -- Nadine Dances AND plays
Nadine, Raymi and I went to the Rochester Thanksgiving Contra Dance, dressed up and happy, Raymi in bright tie-dyed shirt and shorts, me in batik sleeveless long dress. . Barry, Kate and Erek stayed home.
It was a glorious dance night, the room mobbed with happy people, some of whom I knew from a large distance away. Raymi and I danced a complicated, hilarious square, and possibly a contra dance. Nadine and Raymi danced together, including at least one contra and a waltz.
Nadine danced EVERY DANCE!! and stayed fully energetic.
We happily drove back in the cold night -- and found the door locked! I hadn't brought the key -- I figured Kate, Erek and Barry would be home. But they'd gone out. It was cold and icky, and we huddled in Raymi's car. Happily, Nadine had Kate's cell phone number, and happier still, Kate answered the phone -- they came home.
Kate, Barry and Erek were in a very, very festive mood, and I joined the exuberance. Barry and Erek went back out, and Nadine, Kate and I stayed in the kitchen together; Kate and Nadine made it look like a party downstairs, and I went happily up to bed and left them to it.
SATURDAY -- VISITING AND MORE DANCING; NADINE JOINS BAND
Saturday everyone stayed in bed late, after which we had another family breakfast of oatmeal, and I made 5 sweet potato pies. Barry, Kate, Erek and Nadine went off to the Public Market, and came back with a wonderful variety of things including 2 flats of persimmons and wonderful vegetables.
Kate and Erek were going to cook dinner, but Raymi, Nadine and I were going to the dance, so they decided to make it the next day. Nadine fried up extra turkey with onions and spices.
Nadine, Raymi and I went to the dance again, this time Nadine sporting her bald head adorned with Nadine-made dangling earrings. We all danced for the first half.
After the break, Nadine disappeared. It turned out that Nadine wandered up to the English dance, and got taken into the band-- when I arrived while looking for her, there she was, sounding perfect with Tom Hodgson and Tim Ball, who were playing it. I enjoyed watching Nadine play and seeing th eswirling of the dancers. I made it downstairs for a very wild "last dance", and Raymi and I went to check on Nadine.
She played foot percussion again!!! After the official dance, she and her band friends did a wild version of Set Americaine with her long black and white striped socks, feet pumping up and down.
SURPRISE at home -- Erek and Kate had washed every dish, and the kitchen was beautifully cleaned up to a sparkle. What a great surprise. This time I'd brought the keys "just in case" but Kate and Erek were home.
SUNDAY NOVEMBER 29
Erek and I took a nice long walk together, down Canterbury Street to Monroe, then turning right and walking all the way to where Monroe turns to Chestnut Street, across the freeway almost to the Eastman School before turning back and returning. I'd driven that route so often, and it was the first time I'd walked it all the way. I treasure those nice walks with him, the company, conversation, outdoors, and exercise combined into one.
Erek and Kate prepared a wonderful stir-fry -- I'd like to learn his method. Nadine folded paper cranes to make a hanging that can go under a doorway or archway. Kate had brought one for the house, which Nadine happily hung up.
Erek presented me with a wonderful "housewarming" present of three beautiful handmade ceramic bowls. I placed some tof the persimmons in one bowl and set all three of them in a row on the table.
By then I was sitting there blubbering and bubbling about how happy I was.
Erek and Kate finished their packing and we all said our byes. Raymi was staying until Wednesday.
Afterward, it was just me, Raymi and Nadine. I went up to bed.
Downstairs I could hear Raymi and Nadine's happy laughter.
Thanks given. Nadine was in perfect physical shape in every way, hematocrit of 35; the whole family was here, Erek, Kate, Barry, Nadine, Raymi and me. Happy cooking, happy eating, happy socializing, happy games, happy walks, even happy contra dancing. I was SO glad the boys could be with her when she was feeling so perfectly well, as last time they'd visited she'd been having a hard time.
In my journal I wrote a soppy note about dishes, dirtied and washed and dirtied and washed over and over as a symbol of food enjoyed, and an expression of caring how it is served. I drew a heart underneath the journal entry.
I wonder if I'll have this new attitude of gratefulness when I wash the pile of dishes now in the sink....
WEDNESDAY
On Wednesday Raymi arrived first (around 1PM), tall, dark-haired, exuberant, and tie-dyed-shirted. We all immediately went to clinic together for Nadine's asparaginase, and the visit happily went routinely and fast. Ah, if all clinic visits could be like this. Raymi looked wiped-out in the room, understandable as he'd driven from Pittsburgh. After clinic we were so ravenous that we went straight to Great Harvest for sandwiches before going home.
Raymi has his hair short now, done with a delay after Nadine's diagnosis. I dreaded seeing him without his "trademark" gorgeous long thick dark hair, but he looked absolutely wonderful and there there was no danger of losing his uniquely striking appearance. The thick mass of shorter hair looked very good.
Raymi brought an AMAZING gift for Nadine, in a 5-foot-long box that delightfully puzzled her. It was a "walking-stick" flute, an approximately 5-foot-long narrow brown, slightly curved wood. What a gift! She picked it up and instantly created gorgeous music on it -- it had a sweet, rich sound. Plus she looked adorable, my slender girl on the couch with that huge long flute delicately balanced horizontally in front of her lips. It was obvious that Raymi relished getting this present for her.
Barry arrived at 7PM with the organic free-range turkey I'd ordered from Pierre, the local farmer. I wasn't planning to do do much cooking that night -- I was gearing up for the next day, Thanksgiving, when we were going to have homemade cranberry sauce, sweet potato pies, mashed potatoes, gravy, stuffing, and of course the turkey. I had to get the turkey "brined" and had bought a bag for the purpose.
Getting the turkey plus brine into the bag was a comically clumsy operation that ended amazingly successfully with the squishy bulgy bag of brine and turkey in the fridge with no appreciable puddle.
Nadine's flute partner Victor arrived, and the two practiced the Cimarosa concerto again.
We were all hungry and getting so cranky that I relented on my "no-cook" evening and prepared a stir-fry with noodles, after which we all felt better. I was pretty tired, we all were, and I finally went to bed after I made up a bed and welcome note for Erek and Kate, who were arriving late.
Then I didn't sleep; Kate and Erek walked in while I was puttering around downstairs in my nightgown. I greeted them and teetered back up to bed.
THURSDAY -- FOOD DAY
The next day was Thanksgiving Food Day. -- Barry, Erek, Raymi and Nadine started up a game, but I knew the turkey had to tackled even if I wanted to play. They were fun to watch.
Kate came into the kitchen with me and we "did" the turkey together. I "zested" the lemon rind and Kate chopped the garlic; we massaged the turkey (literally) and Kate and I slid our hands under the skin and placed zested lemon peel, chopped garlic, and lemon slices all the way underneath it. Finally we hoisted it into the oven.
I'd requested a turkey thermometer from Barry, but he'd brought a candy thermometer instead, so I had to face Wegman's on Thanksgiving Day. After I got back, someone left the meat thermometer in the turkey and the plastic top melted. I made cranberry-orange sauce, Nadine worked on the stuffing I think, and Kate prepared mashed potatoes with cream.
Raymi went out for a run, and Barry and Erek joined. I made it for about a block and a half before puff-huffing back.
Dinner was magnificent! It was everything that anyone could have hoped for. Raymi had said he'd never had homecooked turkey that he'd liked -- this one was excellent. A full table with cranberry sauce, mashed potatoes, beautiful turkey, stuffing, gravy. We all held hands -- it was thanks to the max.
That night I raked leaves. It took about 2 hours, but it felt great moving and heaving stuff.
FRIDAY NOVEMBER 27th
Another glorious day. A morning of visiting together, a breakfast of pnacakes, and delicious leftovers for lunch and dinner.
About 10AM Nadiine's flute teacher Sophia arrived to coach Nadine and Victor on the Cimarosa concerto. Sophia was in a vivacious mood, sounding almost giddy; they played SO well. It was a party mood, with conversation as well as music. Sophia did an animated job conducting the soaring music, and the music SOARED.
A CONTRA DANCE -- Nadine Dances AND plays
Nadine, Raymi and I went to the Rochester Thanksgiving Contra Dance, dressed up and happy, Raymi in bright tie-dyed shirt and shorts, me in batik sleeveless long dress. . Barry, Kate and Erek stayed home.
It was a glorious dance night, the room mobbed with happy people, some of whom I knew from a large distance away. Raymi and I danced a complicated, hilarious square, and possibly a contra dance. Nadine and Raymi danced together, including at least one contra and a waltz.
Nadine danced EVERY DANCE!! and stayed fully energetic.
We happily drove back in the cold night -- and found the door locked! I hadn't brought the key -- I figured Kate, Erek and Barry would be home. But they'd gone out. It was cold and icky, and we huddled in Raymi's car. Happily, Nadine had Kate's cell phone number, and happier still, Kate answered the phone -- they came home.
Kate, Barry and Erek were in a very, very festive mood, and I joined the exuberance. Barry and Erek went back out, and Nadine, Kate and I stayed in the kitchen together; Kate and Nadine made it look like a party downstairs, and I went happily up to bed and left them to it.
SATURDAY -- VISITING AND MORE DANCING; NADINE JOINS BAND
Saturday everyone stayed in bed late, after which we had another family breakfast of oatmeal, and I made 5 sweet potato pies. Barry, Kate, Erek and Nadine went off to the Public Market, and came back with a wonderful variety of things including 2 flats of persimmons and wonderful vegetables.
Kate and Erek were going to cook dinner, but Raymi, Nadine and I were going to the dance, so they decided to make it the next day. Nadine fried up extra turkey with onions and spices.
Nadine, Raymi and I went to the dance again, this time Nadine sporting her bald head adorned with Nadine-made dangling earrings. We all danced for the first half.
After the break, Nadine disappeared. It turned out that Nadine wandered up to the English dance, and got taken into the band-- when I arrived while looking for her, there she was, sounding perfect with Tom Hodgson and Tim Ball, who were playing it. I enjoyed watching Nadine play and seeing th eswirling of the dancers. I made it downstairs for a very wild "last dance", and Raymi and I went to check on Nadine.
She played foot percussion again!!! After the official dance, she and her band friends did a wild version of Set Americaine with her long black and white striped socks, feet pumping up and down.
SURPRISE at home -- Erek and Kate had washed every dish, and the kitchen was beautifully cleaned up to a sparkle. What a great surprise. This time I'd brought the keys "just in case" but Kate and Erek were home.
SUNDAY NOVEMBER 29
Erek and I took a nice long walk together, down Canterbury Street to Monroe, then turning right and walking all the way to where Monroe turns to Chestnut Street, across the freeway almost to the Eastman School before turning back and returning. I'd driven that route so often, and it was the first time I'd walked it all the way. I treasure those nice walks with him, the company, conversation, outdoors, and exercise combined into one.
Erek and Kate prepared a wonderful stir-fry -- I'd like to learn his method. Nadine folded paper cranes to make a hanging that can go under a doorway or archway. Kate had brought one for the house, which Nadine happily hung up.
Erek presented me with a wonderful "housewarming" present of three beautiful handmade ceramic bowls. I placed some tof the persimmons in one bowl and set all three of them in a row on the table.
By then I was sitting there blubbering and bubbling about how happy I was.
Erek and Kate finished their packing and we all said our byes. Raymi was staying until Wednesday.
Afterward, it was just me, Raymi and Nadine. I went up to bed.
Downstairs I could hear Raymi and Nadine's happy laughter.
Sunday, January 3, 2010
Last of November to Early December
Nadine and Raymi got a super photo-shoot, Nadine finally got her chemo, I got icky-sick and sadly had to avoid Nadine; we had delicious Mexican food, and a late clinic appointment messed up Nadine's rehearsal and almost got me a speeding ticket.
__________________________
Nadine and Raymi's photo-shoot with Carrie the wonderful photographer that Nadine had met through TLC. Carried had asked Nadine if she wanted to collaborate on a special project centered on Nadine's own life, and that would include both "realistic" and "fantasy" style pictures. Carrie also wanted to include family in this project. There are expected to more "shoots" with Erek and even me. The project could end up in an exhibition. Nadine is very excited.
On Sunday night November 29th, Nadine brought out some photos, including one of Raymi in tie-dyes holding Nadine, also in tie-dyes, upside down. She looked about 6 and Raymi looked about 16. It all seems far away,.
The kids wanted to go our for Mexican dinner and we drove off after posting on the homeschool list and getting an early response on it. Of course the place we were looking for (in Webster) was closed, but the kids had found another one (online) in Irondequoit. It was suitably garish, and conducive to rowdy conversation. Nadine ate a huge amount, yay, and I enjoyed it all my enchiladas.. We topped off the dinner with horchatas, one of my favorite things to drink. Raymi hadn't had one before, and judging from his obvious enjoyment I suspect it's not his last.
At home, Nadine brought out the 5-foot-long flute she got from Raymi and we played some music together. -
INSIGHT ON DISHES
I wrote with an insight on dishes, dirtied and washed and dirtied and washed and dirtied and washed over and over and over, as a symbol of food enjoyed and the care with which it is served.
I wonder if I'll have a new attitude of gratefulness when I wash the pile of the dishes in the sink.
I drew a heart underneeath the journal entry, and thanked Nadine for insisting that I get it.
GRAND PHOTO-SHOOT WITH CARRIE MONDAY NOVEMBER 30th
Nadine and Raymi did the photo-shoot with Carrie, and it was an exuberant wonderful one. I actually went with them, and took some pictures of the elaborate set-up, white lights and white reflectors being set up and raised. Raymi and Nadine postured around, and I took some pictures during set-up. Later,during the photo-shoot itself I lay on the couch in the darkened lounge, as I was really tired. I listened to the disco music, and every now and then I saw flashes of light and perhaps heard peals of laughter or exclamations; the lights reminded me of lightning when camping in a tent. It was wonderful to hear (and see) people so animated. Afterwards, everyone left in a wonderful mood.
TUES DECEMBER 1ST --- Nadine's blood test was taken as usual. Raymi was still here visiting, which was a happy tim. I started to feel sick.
WED: CHEMO REDUCED DUE TO DELAYS
I was still feeling wretchedly sick and stayed home and rested while Raymi brought Nadine to clinic, where she finally got her chemo treatment -- 2 weeks late. Her APC was up with a vengeance to 1200, well above the 1000 needed.
Nadine's doxorubicin dose was reduced by a bout a third in the hopes of her chemo cycle going back to normal length. I was ready to squawk, but was told, at least, that the total cumulative dose would be the same, and that she would receive an extra treatment of doxorubicin to make up the deficiency.
I hadn't realized that doxorubicin is measured as "total cumulative dose" over time; there is a limit based on its toxicity. I still was worried about the reduction, but there wasn't wiggle room there, and the fact is that doxorubicin is so, so toxic...
Raymi left for Pittsburgh directly after dropping Nadine off at the hospital.
LATE CLINIC MESSES UP REHEARSAL, BUT GREAT REHEARSAL ANYWAY
Wednesday at 4:30PM Nadine had her first scheduled rehearsal with Joe Werner for the Cimarosa Concerto with Victor --they were meeting at Hochstein Music School at about 4:30 PM. However, clinic IS clinic, and there was a big delay or mix-up at the pharmacy, and Nadine didn't get out until about 4:30 -- I drove over to get her, and to get a prescription for her. Victor was already at Hochstein. I was anxious and furious about the delay, and also completely helpless, driving around the hospital's construction-impeded parking circle. Arrggghhhh!!! The competition was the next week and Nadine would be at AllState from Thurs through Sunday.
Happily, Joe was able to re-schedule the rehearsal, for 6:30 and cell phones proved helpful in communicating with Victor, Joe and Nadine.
The rehearsal was glorious -- Joe was able to secure a performance hall, and Victor and Nadine sounded wonderful on the stage with the piano back-up. I was amazed that Joe was sight-reading the piece. He was extremely supportive of them too -- they really were well co-ordinated. Nadine's teacher Sophia arrived and busily commented and worked with them.
I was on antibiotics by then and feeling somewhat better, but still wanted to somewhat stay away from Nadine..
WISTFUL -- ME TOO SICK TO SAFELY CUDDLE NADINE
Nadine was feeling wistful post-chemo and ruefully expressed that it was ironic that there were so many times she didn't want me near her, but when she really DID want to cuddle me I was too sick to rick it.. She wanted to sleep with me and we couldn't do that either.
SO -- we each took a stuffed animal to bed, and that way each of us could think of the other one.
__________________________
Nadine and Raymi's photo-shoot with Carrie the wonderful photographer that Nadine had met through TLC. Carried had asked Nadine if she wanted to collaborate on a special project centered on Nadine's own life, and that would include both "realistic" and "fantasy" style pictures. Carrie also wanted to include family in this project. There are expected to more "shoots" with Erek and even me. The project could end up in an exhibition. Nadine is very excited.
On Sunday night November 29th, Nadine brought out some photos, including one of Raymi in tie-dyes holding Nadine, also in tie-dyes, upside down. She looked about 6 and Raymi looked about 16. It all seems far away,.
The kids wanted to go our for Mexican dinner and we drove off after posting on the homeschool list and getting an early response on it. Of course the place we were looking for (in Webster) was closed, but the kids had found another one (online) in Irondequoit. It was suitably garish, and conducive to rowdy conversation. Nadine ate a huge amount, yay, and I enjoyed it all my enchiladas.. We topped off the dinner with horchatas, one of my favorite things to drink. Raymi hadn't had one before, and judging from his obvious enjoyment I suspect it's not his last.
At home, Nadine brought out the 5-foot-long flute she got from Raymi and we played some music together. -
INSIGHT ON DISHES
I wrote with an insight on dishes, dirtied and washed and dirtied and washed and dirtied and washed over and over and over, as a symbol of food enjoyed and the care with which it is served.
I wonder if I'll have a new attitude of gratefulness when I wash the pile of the dishes in the sink.
I drew a heart underneeath the journal entry, and thanked Nadine for insisting that I get it.
GRAND PHOTO-SHOOT WITH CARRIE MONDAY NOVEMBER 30th
Nadine and Raymi did the photo-shoot with Carrie, and it was an exuberant wonderful one. I actually went with them, and took some pictures of the elaborate set-up, white lights and white reflectors being set up and raised. Raymi and Nadine postured around, and I took some pictures during set-up. Later,during the photo-shoot itself I lay on the couch in the darkened lounge, as I was really tired. I listened to the disco music, and every now and then I saw flashes of light and perhaps heard peals of laughter or exclamations; the lights reminded me of lightning when camping in a tent. It was wonderful to hear (and see) people so animated. Afterwards, everyone left in a wonderful mood.
TUES DECEMBER 1ST --- Nadine's blood test was taken as usual. Raymi was still here visiting, which was a happy tim. I started to feel sick.
WED: CHEMO REDUCED DUE TO DELAYS
I was still feeling wretchedly sick and stayed home and rested while Raymi brought Nadine to clinic, where she finally got her chemo treatment -- 2 weeks late. Her APC was up with a vengeance to 1200, well above the 1000 needed.
Nadine's doxorubicin dose was reduced by a bout a third in the hopes of her chemo cycle going back to normal length. I was ready to squawk, but was told, at least, that the total cumulative dose would be the same, and that she would receive an extra treatment of doxorubicin to make up the deficiency.
I hadn't realized that doxorubicin is measured as "total cumulative dose" over time; there is a limit based on its toxicity. I still was worried about the reduction, but there wasn't wiggle room there, and the fact is that doxorubicin is so, so toxic...
Raymi left for Pittsburgh directly after dropping Nadine off at the hospital.
LATE CLINIC MESSES UP REHEARSAL, BUT GREAT REHEARSAL ANYWAY
Wednesday at 4:30PM Nadine had her first scheduled rehearsal with Joe Werner for the Cimarosa Concerto with Victor --they were meeting at Hochstein Music School at about 4:30 PM. However, clinic IS clinic, and there was a big delay or mix-up at the pharmacy, and Nadine didn't get out until about 4:30 -- I drove over to get her, and to get a prescription for her. Victor was already at Hochstein. I was anxious and furious about the delay, and also completely helpless, driving around the hospital's construction-impeded parking circle. Arrggghhhh!!! The competition was the next week and Nadine would be at AllState from Thurs through Sunday.
Happily, Joe was able to re-schedule the rehearsal, for 6:30 and cell phones proved helpful in communicating with Victor, Joe and Nadine.
The rehearsal was glorious -- Joe was able to secure a performance hall, and Victor and Nadine sounded wonderful on the stage with the piano back-up. I was amazed that Joe was sight-reading the piece. He was extremely supportive of them too -- they really were well co-ordinated. Nadine's teacher Sophia arrived and busily commented and worked with them.
I was on antibiotics by then and feeling somewhat better, but still wanted to somewhat stay away from Nadine..
WISTFUL -- ME TOO SICK TO SAFELY CUDDLE NADINE
Nadine was feeling wistful post-chemo and ruefully expressed that it was ironic that there were so many times she didn't want me near her, but when she really DID want to cuddle me I was too sick to rick it.. She wanted to sleep with me and we couldn't do that either.
SO -- we each took a stuffed animal to bed, and that way each of us could think of the other one.
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