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!!!!!!!!!
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