CLINIC, NATIONAL SHORTAGE OF HER ASPARAGINASE, SHE GETS ANOTHER KIND
There was a national shortage of the E. Coli asparaginase of the type she usually gets, so we were told she'd get another kind. It would have PEG in it, and be time-released to last 2 weeks rather than one week (meaning no need for asparaginase the next week!) However, she'd need multiple injections in her leg at the time it was given, rather than the usual "one". Oh dear. Another change. Of course i wanted to know if there was a downside -- so far, they didn't have one known. She got the new asparaginase -- some people needed 3 shots, but she only needed 2. No one complained.
WEIGHT LOSS-- Nadine lost another pound. Not what was wanted.
MERCAPTOPURINE REDUCTION -- This was announced to happen in the hopes her counts would recover earlier in the next-cyce. However, she had only had 6-mercaptopurine for one week before the problem hit that cycle.
MEDICAL INFO -- I had asked Margaret for more detailed information on the medications -- I wanted to know their "paths", the way they worked, etc., how each one did its job of fighting cancer (including the chemistry), plus getting into learning more of the risks of medicines, and possible outcomes of her situation, and the longterm picture, even if it might feel scary to contemplate.
Margaret arrived with a bunch of info for me to read -- they have a Prescription for Information which can be given out and the lab can send material on whatever I would request. However, most of the descriptions, at first glance, didn't seem to have what I wantd. There was a lot on side effects etc., but I didn't see enough of the biochemistry, etc. I also would like to get the exact doses of the chemo meds.
Eric Iglewski came in and talked about benefits for Nadine, and also delivered the recommendation.
ERIC'S HEART IS LIKE A MOTHER'S LAP
I once told Eric Iglewski that his heart was like a other's lap -- no matter how many peole there were, there was always room for another.
OFF TO GOODWILL
Nadine wanted new pants, that fit, in the worst way -- I hoped she wouldn't need them for too long, and would gain weight, but really she needed something that fit, so we went to Goodwill. I figured 2 hours would be enough, and it was a fun time really -- she found 2 pairs of jeans she likes. Of course, I can't see why she didn't like some of the other pairs, which frankly looked the same to me as the ones she'd bought. But she was adamant, and I wasn't about to fight with her. I suppose I was probably the same way when I was a teen. I meanwhile looked for a sweater, finding a cardigan. She got some really nice shirts as well.
LATE NIGHT AGAIN WORKING I felt a need to prepare a summary of Nadine's medical situation for the much-recommended naturopath, Les Moore, whom Nadine and I had a "Meet the Doctor" session with the next day. It took way too late, but I felt it was important to send this kind of thing ahead of time. It took a while of course, but although I grumbled about going to bed too late again, I had a nice rest this time.
THURSDAY
I washed dishes and cleaned the house while "on hold" trying to order something relatively minor via telephone, and found that Paypal won't accept my perfectly usable credit card that works for everyone else. And I guess that means some mail-order places don't accept it either -- the sales rep, who was struggling with his English, informed me that Paypal wouldn't take that card and neither would he. Stuff like this explains why I sometimes don't get work done. It affects my mood and the quality (at least aesthetically) of Nadine's meals. I also finally fished the paperwork for the Hinsdale district -- this was straightforward enough but I'd procrastinated.
Saturday, February 6, 2010
SEEING FRIENDS; NADINE DELAYS COLLEGE;
WEDNESDAY JANUARY 21ST -- HOMESCHOOL MEETING, SEEING FRIENDS
A wonderful homeschoolers' group meeting -- the topic was college. The meeting was a nice boost friend-wise as well. Nadine seemed to have a nice time there too, happily, sitting there in the discussion circle. Diana came too, although she avoided people as she thought she might be contagious. I was SO pleased to see Amy Mantell, whom I met about 5 years ago -- we had a lovely, satisfying talk and almost went out to eat, but it was close to clinic time. And someone told me she knew of a girl in Florida who was recently diagnosed with leukemia (sounded like ALL, which is what Nadine has) and I offered my contact into and mentioned TLC, which has a website with places for conversations.
I NEED TO SEE FRIENDS TOO
I realize that Nadine isn't the only one not seeing enough people. I realize how important it is for ME to keep up contacts with friends too. So many people have so graciously and genuinely suggested getting together, some whom I know and even some whom I don't. It's time to do it more. I've put it off so long. It's in my court.
COLLEGE
The discussion affirmed Nadine's correctness in deciding to put off college for a year. The importance of visiting was mentioned. There are now 2 college visit "tours" considered, one of the midwest possibly in early March (Wisconsin, Oberlin, Michigan, and possibly U of Illinois), and one in April, maybe to New England.
There was talk of the joys of some of the lesser-known colleges, and preparation for college.
This combined with the advice that a music student meet the teacher at a college or conservatory, made sense.
ON THE SUBJECT OF RECOMMENDATIONS -- Eric Iglewski sent me a copy of the recommendation for he wrote for Nadine. It was STELLAR, and also beautifully and eloquently written. What a gift and affirmation!
FINALLY ANNOUNCING THE COLLEGE DELAY -- RELIEF AND LOSS
I "bit the bullet" and sent emails to Evan Chambers (the composition chair at Michigan) and also the admissions counselor, telling them Nadine had decided to delay applying and detailing some reasons.
It was a sad feeling.
I received very supportive and encouraging emails from both of them, support and encouragement for Nadine to visit as well. It was time to announce Nadine's decision and face, once again, reality.
Some of the sadness was the loss of college plans and the reality of more people leaving; some of it, once again, was the generalized "ARRRRGGGGHHH" at the global, enormous changes brought to Nadine by leukemia.
CLINIC, NATIONAL SHORTAGE OF HER ASPARAGINASE, SHE GETS ANOTHER KIND
There was a national shortage of the E. Coli asparaginase of the type she usually gets, so we were told she'd get another kind. It would have PEG in it, and be time-released to last 2 weeks rather than one week (meaning no need for asparaginase the next week!) However, she'd need multiple injections in her leg at the time it was given, rather than the usual "one". Oh dear. Another change. Of course i wanted to know if there was a downside -- so far, they didn't have one known. She got the new asparaginase -- some people needed 3 shots, but she only needed 2. No one complained.
WEIGHT LOSS-- Nadine lost another pound. Not what was wanted.
MERCAPTOPURINE REDUCTION -- This was announced to happen in the hopes her counts would recover earlier in the next-cyce. However, she had only had 6-mercaptopurine for one week before the problem hit that cycle.
MEDICAL INFO -- I had asked Margaret for more detailed information on the medications -- I wanted to know their "paths", the way they worked, etc., how each one did its job of fighting cancer (including the chemistry), plus getting into learning more of the risks of medicines, and possible outcomes of her situation, and the longterm picture, even if it might feel scary to contemplate.
Margaret arrived with a bunch of info for me to read -- they have a Prescription for Information which can be given out and the lab can send material on whatever I would request. However, most of the descriptions, at first glance, didn't seem to have what I wantd. There was a lot on side effects etc., but I didn't see enough of the biochemistry, etc. I also would like to get the exact doses of the chemo meds.
Eric Iglewski came in and talked about benefits for Nadine, and also delivered the recommendation.
ERIC'S HEART IS LIKE A MOTHER'S LAP
I once told Eric Iglewski that his heart was like a other's lap -- no matter how many peole there were, there was always room for another.
OFF TO GOODWILL
Nadine wanted new pants, that fit, in the worst way -- I hoped she wouldn't need them for too long, and would gain weight, but really she needed something that fit, so we went to Goodwill. I figured 2 hours would be enough, and it was a fun time really -- she found 2 pairs of jeans she likes. Of course, I can't see why she didn't like some of the other pairs, which frankly looked the same to me as the ones she'd bought. But she was adamant, and I wasn't about to fight with her. I suppose I was probably the same way when I was a teen. I meanwhile looked for a sweater, finding a cardigan. She got some really nice shirts as well.
LATE NIGHT AGAIN WORKING I felt a need to prepare a summary of Nadine's medical situation for the much-recommended naturopath, Les Moore, whom Nadine and I had a "Meet the Doctor" session with the next day. It took way too late, but I felt it was important to send this kind of thing ahead of time. It took a while of course, but although I grumbled about going to bed too late again, I had a nice rest this time.
THURSDAY
I washed dishes and cleaned the house while "on hold" trying to order something relatively minor via telephone, and found that Paypal won't accept my perfectly usable credit card that works for everyone else. And I guess that means some mail-order places don't accept it either -- the sales rep, who was struggling with his English, informed me that Paypal wouldn't take that card and neither would he. Stuff like this explains why I sometimes don't get work done. It affects my mood and the quality (at least aesthetically) of Nadine's meals. I also finally fished the paperwork for the Hinsdale district -- this was straightforward enough but I'd procrastinated.
A wonderful homeschoolers' group meeting -- the topic was college. The meeting was a nice boost friend-wise as well. Nadine seemed to have a nice time there too, happily, sitting there in the discussion circle. Diana came too, although she avoided people as she thought she might be contagious. I was SO pleased to see Amy Mantell, whom I met about 5 years ago -- we had a lovely, satisfying talk and almost went out to eat, but it was close to clinic time. And someone told me she knew of a girl in Florida who was recently diagnosed with leukemia (sounded like ALL, which is what Nadine has) and I offered my contact into and mentioned TLC, which has a website with places for conversations.
I NEED TO SEE FRIENDS TOO
I realize that Nadine isn't the only one not seeing enough people. I realize how important it is for ME to keep up contacts with friends too. So many people have so graciously and genuinely suggested getting together, some whom I know and even some whom I don't. It's time to do it more. I've put it off so long. It's in my court.
COLLEGE
The discussion affirmed Nadine's correctness in deciding to put off college for a year. The importance of visiting was mentioned. There are now 2 college visit "tours" considered, one of the midwest possibly in early March (Wisconsin, Oberlin, Michigan, and possibly U of Illinois), and one in April, maybe to New England.
There was talk of the joys of some of the lesser-known colleges, and preparation for college.
This combined with the advice that a music student meet the teacher at a college or conservatory, made sense.
ON THE SUBJECT OF RECOMMENDATIONS -- Eric Iglewski sent me a copy of the recommendation for he wrote for Nadine. It was STELLAR, and also beautifully and eloquently written. What a gift and affirmation!
FINALLY ANNOUNCING THE COLLEGE DELAY -- RELIEF AND LOSS
I "bit the bullet" and sent emails to Evan Chambers (the composition chair at Michigan) and also the admissions counselor, telling them Nadine had decided to delay applying and detailing some reasons.
It was a sad feeling.
I received very supportive and encouraging emails from both of them, support and encouragement for Nadine to visit as well. It was time to announce Nadine's decision and face, once again, reality.
Some of the sadness was the loss of college plans and the reality of more people leaving; some of it, once again, was the generalized "ARRRRGGGGHHH" at the global, enormous changes brought to Nadine by leukemia.
CLINIC, NATIONAL SHORTAGE OF HER ASPARAGINASE, SHE GETS ANOTHER KIND
There was a national shortage of the E. Coli asparaginase of the type she usually gets, so we were told she'd get another kind. It would have PEG in it, and be time-released to last 2 weeks rather than one week (meaning no need for asparaginase the next week!) However, she'd need multiple injections in her leg at the time it was given, rather than the usual "one". Oh dear. Another change. Of course i wanted to know if there was a downside -- so far, they didn't have one known. She got the new asparaginase -- some people needed 3 shots, but she only needed 2. No one complained.
WEIGHT LOSS-- Nadine lost another pound. Not what was wanted.
MERCAPTOPURINE REDUCTION -- This was announced to happen in the hopes her counts would recover earlier in the next-cyce. However, she had only had 6-mercaptopurine for one week before the problem hit that cycle.
MEDICAL INFO -- I had asked Margaret for more detailed information on the medications -- I wanted to know their "paths", the way they worked, etc., how each one did its job of fighting cancer (including the chemistry), plus getting into learning more of the risks of medicines, and possible outcomes of her situation, and the longterm picture, even if it might feel scary to contemplate.
Margaret arrived with a bunch of info for me to read -- they have a Prescription for Information which can be given out and the lab can send material on whatever I would request. However, most of the descriptions, at first glance, didn't seem to have what I wantd. There was a lot on side effects etc., but I didn't see enough of the biochemistry, etc. I also would like to get the exact doses of the chemo meds.
Eric Iglewski came in and talked about benefits for Nadine, and also delivered the recommendation.
ERIC'S HEART IS LIKE A MOTHER'S LAP
I once told Eric Iglewski that his heart was like a other's lap -- no matter how many peole there were, there was always room for another.
OFF TO GOODWILL
Nadine wanted new pants, that fit, in the worst way -- I hoped she wouldn't need them for too long, and would gain weight, but really she needed something that fit, so we went to Goodwill. I figured 2 hours would be enough, and it was a fun time really -- she found 2 pairs of jeans she likes. Of course, I can't see why she didn't like some of the other pairs, which frankly looked the same to me as the ones she'd bought. But she was adamant, and I wasn't about to fight with her. I suppose I was probably the same way when I was a teen. I meanwhile looked for a sweater, finding a cardigan. She got some really nice shirts as well.
LATE NIGHT AGAIN WORKING I felt a need to prepare a summary of Nadine's medical situation for the much-recommended naturopath, Les Moore, whom Nadine and I had a "Meet the Doctor" session with the next day. It took way too late, but I felt it was important to send this kind of thing ahead of time. It took a while of course, but although I grumbled about going to bed too late again, I had a nice rest this time.
THURSDAY
I washed dishes and cleaned the house while "on hold" trying to order something relatively minor via telephone, and found that Paypal won't accept my perfectly usable credit card that works for everyone else. And I guess that means some mail-order places don't accept it either -- the sales rep, who was struggling with his English, informed me that Paypal wouldn't take that card and neither would he. Stuff like this explains why I sometimes don't get work done. It affects my mood and the quality (at least aesthetically) of Nadine's meals. I also finally fished the paperwork for the Hinsdale district -- this was straightforward enough but I'd procrastinated.
TLC Sleep-Over Party, Wuthering Heights, More Chemo Delays, Music
Sunday I felt wistful and tired driving back to Rochester. I gratefully got Nadine back to her orchestra rehearsal on time. Nadine wanted Taco Bell big-time -- we didn't have much time, and I agreed. It was definitely a Taco Bell kind of evening -- 7-layer burritos, here we came. I'd forgotten how much I liked them too.
TEENS LIVING WITH CANCER SLEEP-OVER PARTY
This was at the home of Lauren, founding mother of TLC. About 6 girls went, all looking quite happy as they walked in the door, a flurry of parents and kids arriving and much glee. Lauren invited me in for a little bit; I left, found out Nadine had forgotten her toothbrush, got her one, came back in. It all looked pretty normal, including the forgotten toothbrush. I drove the toothbrush back to Nadine, visited Lauren a bit, and drove home.
I'd wanted a night to do my own stuff, but when I got home I was so tired that I put away the food and went straight up to bed.
Cancer or none, the next morning the 6-or-so girls were an almost-caricature-ish picture of The All-American Teen Girl Sleep-Over -- stumbling blearily and happily around Lauren's kitchen in their jammies, sitting at the table for a breakfast of egg-or-quiche, bacon, bagels, and blueerry-muffin cake. Two or three bald-headed girls, including Nadine, sported henna "tattoo" pictures of eyes on the back of their heads (other girls had beautiful if messy hair). They'd made pizzas, perhaps done other craft stuff, etc. -- much fun. One girl had just won a community service award for working on a book club session introducing teens to two novels whose protagonists were teens with cancer. She's a very exuberant 15-year-old who is into theater, and whom Nadine likes a lot.
At least I'd been smart enough not to schedule any organized activity on Monday. Nadine was pretty tired when we got home, and curled up on the couch. I went up to bed. Nadine did a decent amount of practicing, and I got the kitchen cleaned up and hygienic. The sweet potato pie came out late for dinner, but it was on time for her "second dinner". A bath at night, perhaps for us both (separately) and an all-in-all pleasant evening.
WUTHERING HEIGHTS
Nadine is reading Wuthering Heights. She picked it up from my bookshelf when we were in Hinsdale over the week-end, and didn't put it down. She's finding it really interesting. This interests me because Wuthering Heights is classified as a "Great Book", the kind of classic many people wouldn't go near unless they were assigned it in an English literature class. Karen Sciortino, the admissions couselor at Mc Gill, had asked Erek to make two lists of books he'd read, one for "schooling" and one for pleasure. She said she'd be suspicious if he put Wuthering Heights on his "pleasure" list. But it would be on Nadine's pleasure list. It is an excellent book.
WHY AM I SO TIRED? WHY IS IT SO HARD TO REST?
I don't know why I have so much trouble resting. Is it worry? Is my body trying to fend off something? It sometimes happens when I see no reason, and has been persistent and awful. I had thoroughly enjoyed the week-end; now, after the night of restlessness I felt sick again -- or maybe it was exhaustion, yucky and tedious. I gratefully got Nadine back to her orchestra rehearsal on time, and I went back to the house and unpacked,did chores, and got Nadine. It was pouring and we rushed out into it.
NEW SUBSTITUTE NURSE, AND MORE CHEMO DELAY
I was still tired Tuesday January 19th, and wanted to clean before the substitute nurse, Leslie, would come. There was still a load of dishes in the sink. Just about every week, on Jessie's day to see Nadine, I think this time I'll clean up the house and "show" Jessie that I'm really, truly, not a slob, and every week she ends up walking into a messy place. It's been really cleaned up just once, and Jessie's obviously noticing the improvement made my self-consciousness about the later-on mess even worse.
The new nurse was very knowledgeable too, and very nice, although not as much a "specialist" in pediatric oncology as Jessie. Nadine's blood pressure was fine, although she looked somewhat pale.
I'LL BE GETTING READY TO LEARN TO DE-ACCESS NADINE'S PORT, WILL BE GIVING METHATREXATE TOO.
This is for Nadine's "Maintenance" phase of chemo, to last for about a year and half, starting probably in March. To my surprise, Leslie indicated that she thought I should learn to "access" Nadine's port, a surprise.
I knew I was going to be learning to DE-access Nadine's port for the next phase of chemo (maintenance) that will be coming up fairly soon, probably in March. Then she'll be going to clinic every three weeks (or when blood counts are up) for regular appointments. Jessie will usually come in to "access" her and draw blood; if all looks well, I'll give Nadine methatrexate and then de-access the port. It scares me now, but if I learned to give Nadine her daily heparin injections, and to do the complicated wound cleansing I did for for months, this should be just fine too.
Leslie encourage Nadine to try one of the flushes associated with de-accessing, and Nadine pushed the stuff into her own port. Leslie isn't as much into steerile gloves for me to use (although she uses them as she's from outside). I want to use them anyway.
CHEMO DELAYED AGAIN
I got a call from Margaret at the lab -- her APC had gone DOWN, not up -- from 700 to 600. Ick and distress. I figured it would be another week -- this would meant that she'd be about 2 weeks post-chemo for Dance Flurry, which was not what I hoped for -- this will be a hectic week-end with LOTS of performing for her.
REST OF THE DAY --
INadine felt better than I did, I suppose. After my nice bedtime Monday night I had another hard night resting. On Tuesday I didn't take any rests during the day, figuring that maybe my Monday rest-up had caused the tough time that night.
Nadine was going to drive herself to her flute lesson, but Sophia her teacher had a cold, and I insisted she not take a chance on going. She pracriced a lot, though.
We did go out later, she dropped off her library book, and I suggestd a meal out. She'd wanted to go out for Mexican food when her counts were abysmal, and I'd told her that when they went up we could go. She didn't want Mexican food, so we went to Aladdin's, a nice Greek place nearby -- she ate well, the atomosphere was nice, and Nadine and I had a relaxed time. It was well worth it going there -- I loved sitting next to Nadine and enjoying her presence. She relished the beef on her pitta roll with souvlaki and my souvlaki plate, and enjoyed the huge bowl of chili-lentil soup. We just visited with each other.
We also went out to get her passport ofr her RPYO tour to Quebec, but we missed the post office and anyway I didn't have her old passport book number. Paperwork is such a pain. I might have been wrong, but I had insisted she wear a wig for her passport photo -- -It just didn't seem right for her to have a bald photo on her passport for the next 10 years. Nadine had balked at it, but finally acquiesced. I found a passable wig in her original color, in the free box at the hospital specialty shop, and Nadine had gotten the picture taken at a pharmacy. Going to the post office to submit the application, I thought she should wear the wig again "just in case" She balked again but put it on -- she put a nice puffy black wool cap, with a nice brim, over it, and looked really nice and spiffy and healthy. She said it was scratchy. We slogged to the post office, and the man said it was too late and that we were best with an appointment anyway.
CONFLUENCE CALLS, PIANO PRACTICE
I made some Confluence-oriented calls and also some calls about the grouping of me, Curt, and Hope. I still find booking is stressful. :It seems like it should just be straight-forward but no. For Confluence, Nadine has other gigs; Tim has other gigs; even I sometimes have other gigs; mistakes get made in schedules, some dances take a while to book. for Curt and Hoe, Hope won't be at the Syracuse dance, and I tried to get it changed to time she and Curt could both do it (May 7th), only the dance was already booked that day. I still need to line up a caller for the Woodstock dance. I wonder if we can get another venue for May 7th -- the Ithaca dance might be cancelled, and anyhow there's so much more -- it could take pages and pages, but I don't want to write it and I doubt anyone would enjoy reading it anyway. I'm enjoying playing with Nadine and also doing some playing on my own; this means more coordinating though.
After that I tried to practice the piano, did nicely on arpeggios, started a new Czeerny exerics, and practically (or perhaps really!) fell asleep at the piano. I got up, made sure Nadine got her meds, and went to bed.
Oh yes, I asked Margaret (at the clinic) if I could change my appointment the next day so I could get to the homeschool meeting at the Kanack School. I knew that friends were indeed important, and this was the time to visit and also the topic was college.
TEENS LIVING WITH CANCER SLEEP-OVER PARTY
This was at the home of Lauren, founding mother of TLC. About 6 girls went, all looking quite happy as they walked in the door, a flurry of parents and kids arriving and much glee. Lauren invited me in for a little bit; I left, found out Nadine had forgotten her toothbrush, got her one, came back in. It all looked pretty normal, including the forgotten toothbrush. I drove the toothbrush back to Nadine, visited Lauren a bit, and drove home.
I'd wanted a night to do my own stuff, but when I got home I was so tired that I put away the food and went straight up to bed.
Cancer or none, the next morning the 6-or-so girls were an almost-caricature-ish picture of The All-American Teen Girl Sleep-Over -- stumbling blearily and happily around Lauren's kitchen in their jammies, sitting at the table for a breakfast of egg-or-quiche, bacon, bagels, and blueerry-muffin cake. Two or three bald-headed girls, including Nadine, sported henna "tattoo" pictures of eyes on the back of their heads (other girls had beautiful if messy hair). They'd made pizzas, perhaps done other craft stuff, etc. -- much fun. One girl had just won a community service award for working on a book club session introducing teens to two novels whose protagonists were teens with cancer. She's a very exuberant 15-year-old who is into theater, and whom Nadine likes a lot.
At least I'd been smart enough not to schedule any organized activity on Monday. Nadine was pretty tired when we got home, and curled up on the couch. I went up to bed. Nadine did a decent amount of practicing, and I got the kitchen cleaned up and hygienic. The sweet potato pie came out late for dinner, but it was on time for her "second dinner". A bath at night, perhaps for us both (separately) and an all-in-all pleasant evening.
WUTHERING HEIGHTS
Nadine is reading Wuthering Heights. She picked it up from my bookshelf when we were in Hinsdale over the week-end, and didn't put it down. She's finding it really interesting. This interests me because Wuthering Heights is classified as a "Great Book", the kind of classic many people wouldn't go near unless they were assigned it in an English literature class. Karen Sciortino, the admissions couselor at Mc Gill, had asked Erek to make two lists of books he'd read, one for "schooling" and one for pleasure. She said she'd be suspicious if he put Wuthering Heights on his "pleasure" list. But it would be on Nadine's pleasure list. It is an excellent book.
WHY AM I SO TIRED? WHY IS IT SO HARD TO REST?
I don't know why I have so much trouble resting. Is it worry? Is my body trying to fend off something? It sometimes happens when I see no reason, and has been persistent and awful. I had thoroughly enjoyed the week-end; now, after the night of restlessness I felt sick again -- or maybe it was exhaustion, yucky and tedious. I gratefully got Nadine back to her orchestra rehearsal on time, and I went back to the house and unpacked,did chores, and got Nadine. It was pouring and we rushed out into it.
NEW SUBSTITUTE NURSE, AND MORE CHEMO DELAY
I was still tired Tuesday January 19th, and wanted to clean before the substitute nurse, Leslie, would come. There was still a load of dishes in the sink. Just about every week, on Jessie's day to see Nadine, I think this time I'll clean up the house and "show" Jessie that I'm really, truly, not a slob, and every week she ends up walking into a messy place. It's been really cleaned up just once, and Jessie's obviously noticing the improvement made my self-consciousness about the later-on mess even worse.
The new nurse was very knowledgeable too, and very nice, although not as much a "specialist" in pediatric oncology as Jessie. Nadine's blood pressure was fine, although she looked somewhat pale.
I'LL BE GETTING READY TO LEARN TO DE-ACCESS NADINE'S PORT, WILL BE GIVING METHATREXATE TOO.
This is for Nadine's "Maintenance" phase of chemo, to last for about a year and half, starting probably in March. To my surprise, Leslie indicated that she thought I should learn to "access" Nadine's port, a surprise.
I knew I was going to be learning to DE-access Nadine's port for the next phase of chemo (maintenance) that will be coming up fairly soon, probably in March. Then she'll be going to clinic every three weeks (or when blood counts are up) for regular appointments. Jessie will usually come in to "access" her and draw blood; if all looks well, I'll give Nadine methatrexate and then de-access the port. It scares me now, but if I learned to give Nadine her daily heparin injections, and to do the complicated wound cleansing I did for for months, this should be just fine too.
Leslie encourage Nadine to try one of the flushes associated with de-accessing, and Nadine pushed the stuff into her own port. Leslie isn't as much into steerile gloves for me to use (although she uses them as she's from outside). I want to use them anyway.
CHEMO DELAYED AGAIN
I got a call from Margaret at the lab -- her APC had gone DOWN, not up -- from 700 to 600. Ick and distress. I figured it would be another week -- this would meant that she'd be about 2 weeks post-chemo for Dance Flurry, which was not what I hoped for -- this will be a hectic week-end with LOTS of performing for her.
REST OF THE DAY --
INadine felt better than I did, I suppose. After my nice bedtime Monday night I had another hard night resting. On Tuesday I didn't take any rests during the day, figuring that maybe my Monday rest-up had caused the tough time that night.
Nadine was going to drive herself to her flute lesson, but Sophia her teacher had a cold, and I insisted she not take a chance on going. She pracriced a lot, though.
We did go out later, she dropped off her library book, and I suggestd a meal out. She'd wanted to go out for Mexican food when her counts were abysmal, and I'd told her that when they went up we could go. She didn't want Mexican food, so we went to Aladdin's, a nice Greek place nearby -- she ate well, the atomosphere was nice, and Nadine and I had a relaxed time. It was well worth it going there -- I loved sitting next to Nadine and enjoying her presence. She relished the beef on her pitta roll with souvlaki and my souvlaki plate, and enjoyed the huge bowl of chili-lentil soup. We just visited with each other.
We also went out to get her passport ofr her RPYO tour to Quebec, but we missed the post office and anyway I didn't have her old passport book number. Paperwork is such a pain. I might have been wrong, but I had insisted she wear a wig for her passport photo -- -It just didn't seem right for her to have a bald photo on her passport for the next 10 years. Nadine had balked at it, but finally acquiesced. I found a passable wig in her original color, in the free box at the hospital specialty shop, and Nadine had gotten the picture taken at a pharmacy. Going to the post office to submit the application, I thought she should wear the wig again "just in case" She balked again but put it on -- she put a nice puffy black wool cap, with a nice brim, over it, and looked really nice and spiffy and healthy. She said it was scratchy. We slogged to the post office, and the man said it was too late and that we were best with an appointment anyway.
CONFLUENCE CALLS, PIANO PRACTICE
I made some Confluence-oriented calls and also some calls about the grouping of me, Curt, and Hope. I still find booking is stressful. :It seems like it should just be straight-forward but no. For Confluence, Nadine has other gigs; Tim has other gigs; even I sometimes have other gigs; mistakes get made in schedules, some dances take a while to book. for Curt and Hoe, Hope won't be at the Syracuse dance, and I tried to get it changed to time she and Curt could both do it (May 7th), only the dance was already booked that day. I still need to line up a caller for the Woodstock dance. I wonder if we can get another venue for May 7th -- the Ithaca dance might be cancelled, and anyhow there's so much more -- it could take pages and pages, but I don't want to write it and I doubt anyone would enjoy reading it anyway. I'm enjoying playing with Nadine and also doing some playing on my own; this means more coordinating though.
After that I tried to practice the piano, did nicely on arpeggios, started a new Czeerny exerics, and practically (or perhaps really!) fell asleep at the piano. I got up, made sure Nadine got her meds, and went to bed.
Oh yes, I asked Margaret (at the clinic) if I could change my appointment the next day so I could get to the homeschool meeting at the Kanack School. I knew that friends were indeed important, and this was the time to visit and also the topic was college.
Friday, February 5, 2010
A LONG WEEK-END IN HINSDALE, RELAXATION AND PARTY
Stars that we could see, a warm recliner and fireplace, meals, the cat, and hostessing a fun, big open-house party for our friends. Plenty of resting up. And Nadine feeling nice -- after all, it was about 3 weeks post-chemo, generally a nice-feeling time for her.
We arrived after the music competition, and there was a wonderful fire on the wood stove. I collapsed into the recliner and had an ecstatic feeling of not wanting to move, and almost feel asleep there. A simple, wonderful meal; later on, prepared by Barry; later it would be my turn to cook. Barry and Nadine set up for the night, each of them on one wing of the couch. Felicity the cat, no longer skinny, sat with Nadine. Later, Nadine was thrilled to play with her by dragging and long piece of blue fabric down the floor, and watch her act like a kitten. Nadine went through some of her things in her room.
Thursday was a peaceful day at home for the day. I knew I needed lots of rest, and I finally got it. I enjoyed practicing on my own piano, exploring the deep escapement of the keys and all the nuances that came with it. The heat from the wood stove was comforting.
Nadine wanted to cook a nice big squash soup -- Nadine loved Sue Klassen's recipe so we asked Sue to email it to us. I cut the squash while Nadine did other work on the soup, and it came out creamy and nice. At night, we took a wonderful walk outside in the night -- it was nice to bundle up and walk a distance. Nadine wanted hash brown potatoes, but grated them a bit fine -- they turned into mush, so I added flour and made them into potato pancakes.
On Friday Nadine drove herself the approximately 2 miles to Hinsdale school band practice. I went into town and had my hair cut short (yay!).
HOUSE PARTY FUN AND FRIENDS
I had proposed an "open house" house party so we could see our friends, and also because I LOVE having people over. I want to try to do this in Rochester too. I was on my hands and knees cleaning when the first guests arrived early (there might have been confusion about the time), including a woman, Jan, who I didn't know, and whom I really liked . So I had company while I cleaned. I'd planned on a pre-party walk, and we went together, k a nice walk down MacDuffie Drive, and then up the hill, with interesting conversations. I had plenty of food out, and as it was a potluck, more and more food arrived. Corinne and Sadie Jay and Sadie's daughter Willa came, and Steph and 2-year-old Sylvan -- the two kids raced around and played. NAdine played with Willa under the piano. Barry introduced me to his friend Stan, who plays the fiddle and also likes to talk politics, and Barney and Kathy and Angela were there, and Rick and Brenda Snyder -- Rick was Nadine's beloved flute teacher; Brenda is also a friend. Linda and her daughter Kaitlyn, another homeschooling and farming family. Bob Brachmann the "Honey Man" (he keeps bees). I missed the Pryntz-Nadwornies, who used to come when they lived down here, and also missed Lois and her daughters April and Holy-- Nadine missed the two girls. I'm sure I left someone out.
Stan pulled out the fiddle and we did a bunch of swing tunes -- it had been so long since I'd done those -- "All of Me" and "Don't Get Around Much" and that stuff. It was a blast. Nadine and I did a few tunes as well. There were lots of pictures taken.
One nice party -- the last people left around 9PM -- the party ended typical-Southern-Tier, with one or two cars getting stuck in the driveway and having to be yanked out by the Suburban.
SUNDAY
In the morning we got ready to go, and go we did. Although I'd been having a nice time, I still was having trouble resting up enough. My body just does that. I was feeling sick again, after having rested some and feeling better over the week-end. Or the "sick" might have been exhaustion again this time.
i stayed in bed until about 9:30 AM, then we packed up and went out, as Nadine had the Rochester Philharmonic Youth Orchestra rehearsal at 2, and it was time to go. We'd brought up lots of stuff -- we had to bring our bedding, among other things.
The end of a nice week-end, and back up to another nice place up here.
We arrived after the music competition, and there was a wonderful fire on the wood stove. I collapsed into the recliner and had an ecstatic feeling of not wanting to move, and almost feel asleep there. A simple, wonderful meal; later on, prepared by Barry; later it would be my turn to cook. Barry and Nadine set up for the night, each of them on one wing of the couch. Felicity the cat, no longer skinny, sat with Nadine. Later, Nadine was thrilled to play with her by dragging and long piece of blue fabric down the floor, and watch her act like a kitten. Nadine went through some of her things in her room.
Thursday was a peaceful day at home for the day. I knew I needed lots of rest, and I finally got it. I enjoyed practicing on my own piano, exploring the deep escapement of the keys and all the nuances that came with it. The heat from the wood stove was comforting.
Nadine wanted to cook a nice big squash soup -- Nadine loved Sue Klassen's recipe so we asked Sue to email it to us. I cut the squash while Nadine did other work on the soup, and it came out creamy and nice. At night, we took a wonderful walk outside in the night -- it was nice to bundle up and walk a distance. Nadine wanted hash brown potatoes, but grated them a bit fine -- they turned into mush, so I added flour and made them into potato pancakes.
On Friday Nadine drove herself the approximately 2 miles to Hinsdale school band practice. I went into town and had my hair cut short (yay!).
HOUSE PARTY FUN AND FRIENDS
I had proposed an "open house" house party so we could see our friends, and also because I LOVE having people over. I want to try to do this in Rochester too. I was on my hands and knees cleaning when the first guests arrived early (there might have been confusion about the time), including a woman, Jan, who I didn't know, and whom I really liked . So I had company while I cleaned. I'd planned on a pre-party walk, and we went together, k a nice walk down MacDuffie Drive, and then up the hill, with interesting conversations. I had plenty of food out, and as it was a potluck, more and more food arrived. Corinne and Sadie Jay and Sadie's daughter Willa came, and Steph and 2-year-old Sylvan -- the two kids raced around and played. NAdine played with Willa under the piano. Barry introduced me to his friend Stan, who plays the fiddle and also likes to talk politics, and Barney and Kathy and Angela were there, and Rick and Brenda Snyder -- Rick was Nadine's beloved flute teacher; Brenda is also a friend. Linda and her daughter Kaitlyn, another homeschooling and farming family. Bob Brachmann the "Honey Man" (he keeps bees). I missed the Pryntz-Nadwornies, who used to come when they lived down here, and also missed Lois and her daughters April and Holy-- Nadine missed the two girls. I'm sure I left someone out.
Stan pulled out the fiddle and we did a bunch of swing tunes -- it had been so long since I'd done those -- "All of Me" and "Don't Get Around Much" and that stuff. It was a blast. Nadine and I did a few tunes as well. There were lots of pictures taken.
One nice party -- the last people left around 9PM -- the party ended typical-Southern-Tier, with one or two cars getting stuck in the driveway and having to be yanked out by the Suburban.
SUNDAY
In the morning we got ready to go, and go we did. Although I'd been having a nice time, I still was having trouble resting up enough. My body just does that. I was feeling sick again, after having rested some and feeling better over the week-end. Or the "sick" might have been exhaustion again this time.
i stayed in bed until about 9:30 AM, then we packed up and went out, as Nadine had the Rochester Philharmonic Youth Orchestra rehearsal at 2, and it was time to go. We'd brought up lots of stuff -- we had to bring our bedding, among other things.
The end of a nice week-end, and back up to another nice place up here.
Tuesday, January 26, 2010
Nadine Wins Cattaraugus Scholarship, A Journey
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.
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.
JAN 10-12, NADINE SAD THEN FRIENDS & FRENCH FRIES. INTENSE PIANO PRACTICE FOR ME
On January 10th, Nadine felt very wistful and sad about stuff. She'd really wanted to go to the orchestra rehearsal, but her counts were so low that it wasn't safe, even though we'd contacted her section members and none of them were sick.
She cried -- it was the first time I'd seen her cry in a long time. She was missing her old friends who'd gone off to college, and on top of that she couldn't visit the people she knew here. It was a long, hard night.
I did run into Betty, and Claire was in town -- Claire would be over here the next day (Monday), and the timing couldn't have been better.
FRENCH FRIES and FRIEND VISIT FOR NADINE
Claire was in town, and came over on Monday -- she and Nadine sat on the couch and watched videos and it was a treat for Nadine after all the misery.
I'd gotten what I thought was a "brilliant" idea for food to help Nadine gain weight. I made home-made French fries, dumping the potato strips into a deep saucepan of oil (at least the potatoes and oil were organic). Claire and Nadine sat together on the couch with the potatoes. I have to say, Nadine ate a lot of them.
INTENSE PIANO PRACTICE FOR NADINE'S COMPETITION
This was a period of intense piano practice for me for Nadine's flute competition on January 13th, and after about a month of struggling along, I finally started to "get it". I don't think I've practiced anything like I did this one. I was determined that I'd get this one right -- if I didn't, it could look like Nadine had made the blooper. Besides, darn it, I wanted to do something well. The piano part was SO hard -- I was practicing about 2, 3, and maybe more times a day, trying to get the benefit of multiple days of practice. It wasn't even the technique -- the passages just didn't seem to "lie" well on my fingers.. Every now and then, I'd ask Nadine to play it with me at my painfully reduced speed, so I could co-ordinate it with her and understand it more. One day we watched Emmanuel Pahud's version on YouTube, which helped with both coordination and interpretation -- I liked his accompanist's staccato in one part.
Then, after drumming through slow interminable metronomes and repeated passages I eventually got (most of) the passages up to metronome 69 (it needed to be 80). Then, I started to "get it" a few days before The Time. I couldn't do it on the "first try" but if I did a run-through first, I could actually do okay. It got better. It became more fluid. I had energy to listen to what Nadine was playing, and started to "hear" her part in my head when I practiced alone. There were parts with breathtaking pauses, and finally we got them into sync. Never mind the house getting messy and chores not getting done -- I was going to get this. I can say that it did wonders for my technique if not my ego while I worked on it.
I remember calling Ruth Fuller and warning her about how it might or mightn't sound. I still felt sick and the last day or two I had a hard time even sitting at the piano.
But at least I'd had a few nice run-throughs, and the tempo, finally crept up to 80, Nadine's speed. Nadine decided to speed it to 84 -- okay, I got it to 84! We were really sync-ing some of the pauses. It would have been SO nice to have another week to consolidate it all, but at least I hadn't had to play it in public the previous week.
Nadine was in a reasonable mood. We had much packing to do for leaving for the week-end after the competition, To bed, and off for the next day.
She cried -- it was the first time I'd seen her cry in a long time. She was missing her old friends who'd gone off to college, and on top of that she couldn't visit the people she knew here. It was a long, hard night.
I did run into Betty, and Claire was in town -- Claire would be over here the next day (Monday), and the timing couldn't have been better.
FRENCH FRIES and FRIEND VISIT FOR NADINE
Claire was in town, and came over on Monday -- she and Nadine sat on the couch and watched videos and it was a treat for Nadine after all the misery.
I'd gotten what I thought was a "brilliant" idea for food to help Nadine gain weight. I made home-made French fries, dumping the potato strips into a deep saucepan of oil (at least the potatoes and oil were organic). Claire and Nadine sat together on the couch with the potatoes. I have to say, Nadine ate a lot of them.
INTENSE PIANO PRACTICE FOR NADINE'S COMPETITION
This was a period of intense piano practice for me for Nadine's flute competition on January 13th, and after about a month of struggling along, I finally started to "get it". I don't think I've practiced anything like I did this one. I was determined that I'd get this one right -- if I didn't, it could look like Nadine had made the blooper. Besides, darn it, I wanted to do something well. The piano part was SO hard -- I was practicing about 2, 3, and maybe more times a day, trying to get the benefit of multiple days of practice. It wasn't even the technique -- the passages just didn't seem to "lie" well on my fingers.. Every now and then, I'd ask Nadine to play it with me at my painfully reduced speed, so I could co-ordinate it with her and understand it more. One day we watched Emmanuel Pahud's version on YouTube, which helped with both coordination and interpretation -- I liked his accompanist's staccato in one part.
Then, after drumming through slow interminable metronomes and repeated passages I eventually got (most of) the passages up to metronome 69 (it needed to be 80). Then, I started to "get it" a few days before The Time. I couldn't do it on the "first try" but if I did a run-through first, I could actually do okay. It got better. It became more fluid. I had energy to listen to what Nadine was playing, and started to "hear" her part in my head when I practiced alone. There were parts with breathtaking pauses, and finally we got them into sync. Never mind the house getting messy and chores not getting done -- I was going to get this. I can say that it did wonders for my technique if not my ego while I worked on it.
I remember calling Ruth Fuller and warning her about how it might or mightn't sound. I still felt sick and the last day or two I had a hard time even sitting at the piano.
But at least I'd had a few nice run-throughs, and the tempo, finally crept up to 80, Nadine's speed. Nadine decided to speed it to 84 -- okay, I got it to 84! We were really sync-ing some of the pauses. It would have been SO nice to have another week to consolidate it all, but at least I hadn't had to play it in public the previous week.
Nadine was in a reasonable mood. We had much packing to do for leaving for the week-end after the competition, To bed, and off for the next day.
JANUARY!! Braedbaking, clinic woes/transfusions, going to a dance alone, getting sick
Baking, baking...
I felt so grateful for so many things that I went into a happy frenzy of baking miniature gift loaves of bread -- for friends, for the neighbors, for the hospital staff, for TLC people, for various others. It felt so peaceful to do that. I have a feeling I'll be doing some more....Rolling dough, slathering it with thick gooey globs of cinnamon, sugar (organic) mixture, rolling it into a neat package, watching it rise outside and then inside the oven, the odor fragrant-izing the kitchen.
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND MY DISPLEASURE AT CLINIC HOURS
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor who'd just joined the staff. . She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. I mentioned my concern about not wanting to bring Nadine to the ER just for a transfusion, and she actually validated it. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up. What a "breath of fresh air".
To me, some clinic policies seem more time-for-the-medics than patient-and-family-oriented, and the sparse clinic hours, plus having to take them to the ER other times are the worst case in point -- very limited hours, then closing early on Friday each week-end -- and cancer patients have so many time they have to come in. The "kids" have to go to the emergency room if they need any visit after 4:30PM, Friday afternoon, or on the week-end. It's unsafe, and the waits are huge even if they are taken to their "own" room -- it also displaces other "standard" emergency patients who then have to wait longer. Having someone else give voice to this was very helpful t often seems like a clique at the hospital and clinic. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it, especially when it involves the institution itself.
Anyhow, the doc called the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
JANUARY 4th
There was a parents' meeting at TLC. More at another time.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm with Lauren, I have a feeling of peace.
IN PRAISE OF SPONTANEOUS VISITS
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's came in for her transfusion. counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I learned that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh. I hadn't realize this was unusual, although she wasn't the only one.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Dr. Craig Mullen (youth orchestra parent and also head of the pediatric oncology department).
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it. Eucerin or other gooey lotion for the flaking. Mederma for scars.
I CONTRA DANCE WITHOUT NADINE AT HER URGING
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to practice and still get to the dance. I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski.
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Surprise! My friend Betty Wayman was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day -- logistics had taken weeks. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing "Set", cooking, the works. Kara met Nadine at the English Composition class at MCC, and they have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice company for Nadine. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK RIGHT BEFORE SHE HAS TO ACCOMPANY NADINE FOR COMPETITION ON REALLY HARD SONATA
For a while I was exhausted, yet had trouble sleeping at night, trouble feeling okay during the day. Then I ended up with a sore throat, mucous, awful. And it meant I felt it was important to stay away from Nadine, use more sanitizer, sometimes wear in a mask in the car with Nadine, etc. I took a nap on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was t too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine but was stuck in bed. After all this work!
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine even if it was her last lesson before the competition, so she stayed home and did a lot of practicing here, sounding wonderful.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice..
I felt so grateful for so many things that I went into a happy frenzy of baking miniature gift loaves of bread -- for friends, for the neighbors, for the hospital staff, for TLC people, for various others. It felt so peaceful to do that. I have a feeling I'll be doing some more....Rolling dough, slathering it with thick gooey globs of cinnamon, sugar (organic) mixture, rolling it into a neat package, watching it rise outside and then inside the oven, the odor fragrant-izing the kitchen.
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND MY DISPLEASURE AT CLINIC HOURS
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor who'd just joined the staff. . She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. I mentioned my concern about not wanting to bring Nadine to the ER just for a transfusion, and she actually validated it. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up. What a "breath of fresh air".
To me, some clinic policies seem more time-for-the-medics than patient-and-family-oriented, and the sparse clinic hours, plus having to take them to the ER other times are the worst case in point -- very limited hours, then closing early on Friday each week-end -- and cancer patients have so many time they have to come in. The "kids" have to go to the emergency room if they need any visit after 4:30PM, Friday afternoon, or on the week-end. It's unsafe, and the waits are huge even if they are taken to their "own" room -- it also displaces other "standard" emergency patients who then have to wait longer. Having someone else give voice to this was very helpful t often seems like a clique at the hospital and clinic. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it, especially when it involves the institution itself.
Anyhow, the doc called the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
JANUARY 4th
There was a parents' meeting at TLC. More at another time.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm with Lauren, I have a feeling of peace.
IN PRAISE OF SPONTANEOUS VISITS
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's came in for her transfusion. counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I learned that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh. I hadn't realize this was unusual, although she wasn't the only one.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Dr. Craig Mullen (youth orchestra parent and also head of the pediatric oncology department).
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it. Eucerin or other gooey lotion for the flaking. Mederma for scars.
I CONTRA DANCE WITHOUT NADINE AT HER URGING
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to practice and still get to the dance. I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski.
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Surprise! My friend Betty Wayman was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day -- logistics had taken weeks. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing "Set", cooking, the works. Kara met Nadine at the English Composition class at MCC, and they have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice company for Nadine. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK RIGHT BEFORE SHE HAS TO ACCOMPANY NADINE FOR COMPETITION ON REALLY HARD SONATA
For a while I was exhausted, yet had trouble sleeping at night, trouble feeling okay during the day. Then I ended up with a sore throat, mucous, awful. And it meant I felt it was important to stay away from Nadine, use more sanitizer, sometimes wear in a mask in the car with Nadine, etc. I took a nap on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was t too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine but was stuck in bed. After all this work!
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine even if it was her last lesson before the competition, so she stayed home and did a lot of practicing here, sounding wonderful.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice..
DEC-JAN-- NO BLOOD FROM PORT, DINNERS AND BAKING BREAD, NEW YEARS EVE, JANUARY
NO BLOOD FROM NADINE'S PORT, UH-OH. TESTS DELAYED.
Jessie accessed Nadine's port as usual for her blood test. NOTHING CAME OUT. Absolutely nothing. Nadine got into amazing contortions to try to get it working, but nothing! It could have been a clot, but Jessie assured me it wasn't the serious kind, just something right around the tip of the access point that had to be cleaned out at the hospital, something called a TPA (concentrated heparin-like stuff). Nadine was given a choice -- she could have Jessie do a "regular" blood test through her peripheral vein in the arm, and then go to clinic at her normal 1PM appointment time to have the job done while waiting for usual hour after her asparinase injection (which was always done to make sure she didn't have an allergic reaction to it). OR she could avoid the extra poke and have her blood test the next day, but would have have to come in to clinic three hours early, to get the blood test done before the asparaginase. I thought it was a no-brainer -- just get the blood test over with at home -- but Nadine didn't want any more poking in her veins. So much for any free time on Wednesday -- I'd planned to prepare a nice meal for our friends the Pryntz-Nadwornies and also get the house cleaned.
Selfish thoughts? Absolutely! Was Nadine right to exercise her right of choice about her own body? Absolutely! Did I have a right to gripe? Questionable. Did I gripe anyway? Absolutely.
That night I tried to go to bed early ahead of the early clinic the next morning, and of course "early" turned into much later than I'd wanted it to be.
NADINE ACHING -- AWFUL REACTION TO THE BIG-BIG CHEMO AFTER ALL
Nadine had been getting achy, really achy from the chemo, perhaps worse than in a long, long time. And the spit started to return. I'm wondering if the spit is cyclical -- I should check. So sad that she was hurting, really hurting.
WEDNESDAY DEC 30th -- LOST KEYS, COUNTS DOWN, EARLY NEUTROPENIA, NO PORT PROBLEM.
On Wednesday morning all was going well, pre-cooking dinner, on time for clinic -- and then my car and house keys disappeared. I mean, they just vanished. I felt guilty as I hadn't wanted to take Nadine in to clinic early anyway. I slogged through the snow twice to ransack the car -- no keys. I checked pockets of everything I thought I could have worn -- no keys. I finally had to call clinic and they were pretty nice about it. I was wondering what friend I'd have to call for a ride, but finally looked once more in the pocket of the pants I'd already searched once, and there were the keys.
WEIGHT GAIN -- Confirmed! Four pounds up on the hospital scale!
PORT JUST FINE -- Nadine was installed in the treatment room, the nurse stood ready to de-clot the port with the super-heparin, and she checked Nadine's port once more. The port worked perfectly!!! Oh well. Blood was drawn.
UH-OH, VERY EARLY NEUTROPENIA, ANC OF 100 to 300 AFTER ONE WEEK
This was a surprise! Nadine's counts had plummeted for the cycle. No more mercaptopurine for her, and it was only Day 8. Her hematocrit was still 28, and her platelets were at 80, down but not critical. Margaret said there was no reason to check blood agian Friday although I was concerned -- she thought Nadine probably wouldn't need a trasnfusion, and clinic was closed anyway. AFter that, Nadine got her asparaginase, and after an hour (about 2:30) she was out.
We finally finished watching Mary Poppins, which really was delightful. The fun stuff, the run on the bank, the laughing men on the ceiling, Dick Van Dyke, and so on. Nadine smiled and smiled. I like watching her as much as I like watching the show. Afterwards, I pranced around the house singing "A spoonful of sugar makes the medicine go down" -- what can I say?
VISIT TO OTHER TLC GIRL
Nadine wanted to visit the very sick TLC girl upstairs, even though she would need a mask. Even though the TLC teens weren't encouraged to go up there, because she would be looking really bad. Margaret had a talk with Nadine first at clinic, both about the situation and about the fact that Nadine has a different kind of cancer. Nadine really was up for going, and Margaret supported her in doing just that. She also called to make sure it was okay with the family. We went, and it was, indeed, right to be up there. It seemed like everyone on the floor knew Nadine was coming up -- they were all warm. I decided that Nadine should go in alone, and waited in the rec room; after that, the girl's mother came out into the rec room and I held her. After that, I went in and visited as well. We left after that. Not much to say.
HOME DINNERS, FRIENDS AND TIREDNESS
I had a food shop to do and got back around 5 PM; Brian, Diana and the rest of their family were coming at 6. IThere were dirty dishes in the sink, and there was clutter in the living room that I should have taken downstairs a long time earlier. I looked amess too -- my hair was dirty and I was the opposite of "dressed for success". At least I got dinner into the oven.,
They came, cheery as ever -- wonderful 14-year-old Doriel assured me that he didn't care at all about the mess and just was glad to see me. Diaina marched right into the kitchen; the kids all went off to Nadine's messy room, then established themselves in the living room with a rowdy game of "set". Diana chopped zucchini while I washed dishes.
I felt close to falling asleep even at the merry dinner table. I realized how tired and depressed I was, and it was hard to be cheery even with loving friends there. I've felt like a "sad sack", with so much going wrong, and again I didn't want to burden my friends with my issues, although I was truthful at least with Diana. At the table, Diana and Brian caught me up on their lives and I was happy to hear what was going on with them -- other people's stories matter a lot to me. Diana was ready to leave early, and they all went. Later, Diana said she'd been feeling drained that night and didn't feel like much of a guest. I didn't feel like much of a hostess either. So I guess we were in parallel places.
It still was worthwhile to have them -- I LOVE having people over!!
NEW YEAR'S EVE
Even at an APC of 100 to 300, Nadine insisted on playing the New Year's Eve dance at Rochester, and I realized I'd just have to deal with it. She could take precautions, and avoid dancing with people and stay on the stage, but she was going to play for that dance.
As for me, I went to the New Years's Eve party at Alice's parents' house -- I was SO glad she'd invited me. It was an icy road, and I lamented not having on my snow tires yet, sigh. Still I braved it, avoiding the freeway. It was a wonderful family-atmosphere, with old-fashioned decorations, and gobs of people, and nice food, and a nice talk with Diane and Alice and others. I got treated to teens fiddling and to an informal and very lively reading of a Bach Brandenburg concerto, and watching older people and teeny kids bustling around, and a comfy house. Even I sat down and did some music in my own style at the piano. I thought of leaving for the dance and surprising Nadine before midnight, but got talked into staying (happily). I was chatting with Alice when suddenly the New Years countdown started, and we rushed into the party room, where the Times Square event was being shown, and at New Years there was celebration and fun. I left and the driveway was so icy that we walked on the snowy lawn to avoid falling. I had missed seeing Nadine, but she had fun and so did I. Later she told me the dance was "ordinary" .
In the morning, there was Sylvia on the couch. I had to get her up on time to get her to her parents' place.
JANUARY!!!!
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND SUPPORT FOR MY ISSUES IN CLINIC
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor, Dr. Casey, from Sloan Kettering. She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up and I got the sense she was outspoken. What a "breath of fresh air". I looked forward to meeting her.
I have to admit, that some of the clinic policies seem more time-for-the-medics friendly than patient-and-family-friendly, and the clinic hours are a case in point -- closing early on Friday each week-end. The Emergency Room is so unsafe to be in, and so cumbersome, even when they get someone right in like they do with her, that I'm reluctant to bring her. It just isn't right, and having someone else give voice to this has been VERY helpful!!!! It often seems like a clique over there. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it in practice, especially when it involves the institution itself.
Anyhow, Dr. Casey made the call to the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
CONTROVERSY OVER BEDTIME --
Okay, I felt it was important for Nadine to get to bed at a reasonable hour -- which was maybe 1AM but I didn't want it to be 2 or 3AM, with the way she was feeling. From how late NAdine staye din bed Sunday, it was probably the right thing to do, even though I got a bit of resistance.
CREATING BREADS FOR GIFTS
I baked a lot of bread in mini-loaf pans that I got at Cooks' World, and was creating many breads for gifts for people -- for parents, for the neighbors, etc. -- I would take them around. It was lovely to do this. I feel so much gratefulness for people around me.
JANUARY 4th
There was a parents' meeting at TLC.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm at Lauren's house, I have a feeling of peace.
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I found out that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Craig Mullen (youth orchestra parent and also head of the pediatric oncology department). This time he talked about having been convinced to join the medical center orchestra.
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it.
I CONTRA DANCED WITHOUT NADINE
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to pracice and still get to the dance. I also called Bob Fabinski, and let him know teens were coming -- there had been a sour man at the door the last time they'd come. He said he'd make a call.
I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski. That was a great way to handle the problem -- non-confrontational, and just delightful!
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Betty was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing, cooking, the works. Kara met Nadine at the English Composition class at MCC, and have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice food and the company for her. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK
I felt sick, and I was tired, exhausted really, trouble getting rest at night, trouble feeling okay during the day, then ended up with a sore throat, mucous, oh my, awful. And it meant I felt it was important to stay away from Nadine, use even more sanitizing, and so on and on. Oh well, it can happen too.
I took a rest in the middle of the day on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, miserable, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was too weak to pick up in the house, too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine, and was stuck in bed a lot.
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine to take the risk, so she stayed home and did a lot of practicing here, which was very, very nice.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice....
Jessie accessed Nadine's port as usual for her blood test. NOTHING CAME OUT. Absolutely nothing. Nadine got into amazing contortions to try to get it working, but nothing! It could have been a clot, but Jessie assured me it wasn't the serious kind, just something right around the tip of the access point that had to be cleaned out at the hospital, something called a TPA (concentrated heparin-like stuff). Nadine was given a choice -- she could have Jessie do a "regular" blood test through her peripheral vein in the arm, and then go to clinic at her normal 1PM appointment time to have the job done while waiting for usual hour after her asparinase injection (which was always done to make sure she didn't have an allergic reaction to it). OR she could avoid the extra poke and have her blood test the next day, but would have have to come in to clinic three hours early, to get the blood test done before the asparaginase. I thought it was a no-brainer -- just get the blood test over with at home -- but Nadine didn't want any more poking in her veins. So much for any free time on Wednesday -- I'd planned to prepare a nice meal for our friends the Pryntz-Nadwornies and also get the house cleaned.
Selfish thoughts? Absolutely! Was Nadine right to exercise her right of choice about her own body? Absolutely! Did I have a right to gripe? Questionable. Did I gripe anyway? Absolutely.
That night I tried to go to bed early ahead of the early clinic the next morning, and of course "early" turned into much later than I'd wanted it to be.
NADINE ACHING -- AWFUL REACTION TO THE BIG-BIG CHEMO AFTER ALL
Nadine had been getting achy, really achy from the chemo, perhaps worse than in a long, long time. And the spit started to return. I'm wondering if the spit is cyclical -- I should check. So sad that she was hurting, really hurting.
WEDNESDAY DEC 30th -- LOST KEYS, COUNTS DOWN, EARLY NEUTROPENIA, NO PORT PROBLEM.
On Wednesday morning all was going well, pre-cooking dinner, on time for clinic -- and then my car and house keys disappeared. I mean, they just vanished. I felt guilty as I hadn't wanted to take Nadine in to clinic early anyway. I slogged through the snow twice to ransack the car -- no keys. I checked pockets of everything I thought I could have worn -- no keys. I finally had to call clinic and they were pretty nice about it. I was wondering what friend I'd have to call for a ride, but finally looked once more in the pocket of the pants I'd already searched once, and there were the keys.
WEIGHT GAIN -- Confirmed! Four pounds up on the hospital scale!
PORT JUST FINE -- Nadine was installed in the treatment room, the nurse stood ready to de-clot the port with the super-heparin, and she checked Nadine's port once more. The port worked perfectly!!! Oh well. Blood was drawn.
UH-OH, VERY EARLY NEUTROPENIA, ANC OF 100 to 300 AFTER ONE WEEK
This was a surprise! Nadine's counts had plummeted for the cycle. No more mercaptopurine for her, and it was only Day 8. Her hematocrit was still 28, and her platelets were at 80, down but not critical. Margaret said there was no reason to check blood agian Friday although I was concerned -- she thought Nadine probably wouldn't need a trasnfusion, and clinic was closed anyway. AFter that, Nadine got her asparaginase, and after an hour (about 2:30) she was out.
We finally finished watching Mary Poppins, which really was delightful. The fun stuff, the run on the bank, the laughing men on the ceiling, Dick Van Dyke, and so on. Nadine smiled and smiled. I like watching her as much as I like watching the show. Afterwards, I pranced around the house singing "A spoonful of sugar makes the medicine go down" -- what can I say?
VISIT TO OTHER TLC GIRL
Nadine wanted to visit the very sick TLC girl upstairs, even though she would need a mask. Even though the TLC teens weren't encouraged to go up there, because she would be looking really bad. Margaret had a talk with Nadine first at clinic, both about the situation and about the fact that Nadine has a different kind of cancer. Nadine really was up for going, and Margaret supported her in doing just that. She also called to make sure it was okay with the family. We went, and it was, indeed, right to be up there. It seemed like everyone on the floor knew Nadine was coming up -- they were all warm. I decided that Nadine should go in alone, and waited in the rec room; after that, the girl's mother came out into the rec room and I held her. After that, I went in and visited as well. We left after that. Not much to say.
HOME DINNERS, FRIENDS AND TIREDNESS
I had a food shop to do and got back around 5 PM; Brian, Diana and the rest of their family were coming at 6. IThere were dirty dishes in the sink, and there was clutter in the living room that I should have taken downstairs a long time earlier. I looked amess too -- my hair was dirty and I was the opposite of "dressed for success". At least I got dinner into the oven.,
They came, cheery as ever -- wonderful 14-year-old Doriel assured me that he didn't care at all about the mess and just was glad to see me. Diaina marched right into the kitchen; the kids all went off to Nadine's messy room, then established themselves in the living room with a rowdy game of "set". Diana chopped zucchini while I washed dishes.
I felt close to falling asleep even at the merry dinner table. I realized how tired and depressed I was, and it was hard to be cheery even with loving friends there. I've felt like a "sad sack", with so much going wrong, and again I didn't want to burden my friends with my issues, although I was truthful at least with Diana. At the table, Diana and Brian caught me up on their lives and I was happy to hear what was going on with them -- other people's stories matter a lot to me. Diana was ready to leave early, and they all went. Later, Diana said she'd been feeling drained that night and didn't feel like much of a guest. I didn't feel like much of a hostess either. So I guess we were in parallel places.
It still was worthwhile to have them -- I LOVE having people over!!
NEW YEAR'S EVE
Even at an APC of 100 to 300, Nadine insisted on playing the New Year's Eve dance at Rochester, and I realized I'd just have to deal with it. She could take precautions, and avoid dancing with people and stay on the stage, but she was going to play for that dance.
As for me, I went to the New Years's Eve party at Alice's parents' house -- I was SO glad she'd invited me. It was an icy road, and I lamented not having on my snow tires yet, sigh. Still I braved it, avoiding the freeway. It was a wonderful family-atmosphere, with old-fashioned decorations, and gobs of people, and nice food, and a nice talk with Diane and Alice and others. I got treated to teens fiddling and to an informal and very lively reading of a Bach Brandenburg concerto, and watching older people and teeny kids bustling around, and a comfy house. Even I sat down and did some music in my own style at the piano. I thought of leaving for the dance and surprising Nadine before midnight, but got talked into staying (happily). I was chatting with Alice when suddenly the New Years countdown started, and we rushed into the party room, where the Times Square event was being shown, and at New Years there was celebration and fun. I left and the driveway was so icy that we walked on the snowy lawn to avoid falling. I had missed seeing Nadine, but she had fun and so did I. Later she told me the dance was "ordinary" .
In the morning, there was Sylvia on the couch. I had to get her up on time to get her to her parents' place.
JANUARY!!!!
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND SUPPORT FOR MY ISSUES IN CLINIC
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor, Dr. Casey, from Sloan Kettering. She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up and I got the sense she was outspoken. What a "breath of fresh air". I looked forward to meeting her.
I have to admit, that some of the clinic policies seem more time-for-the-medics friendly than patient-and-family-friendly, and the clinic hours are a case in point -- closing early on Friday each week-end. The Emergency Room is so unsafe to be in, and so cumbersome, even when they get someone right in like they do with her, that I'm reluctant to bring her. It just isn't right, and having someone else give voice to this has been VERY helpful!!!! It often seems like a clique over there. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it in practice, especially when it involves the institution itself.
Anyhow, Dr. Casey made the call to the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
CONTROVERSY OVER BEDTIME --
Okay, I felt it was important for Nadine to get to bed at a reasonable hour -- which was maybe 1AM but I didn't want it to be 2 or 3AM, with the way she was feeling. From how late NAdine staye din bed Sunday, it was probably the right thing to do, even though I got a bit of resistance.
CREATING BREADS FOR GIFTS
I baked a lot of bread in mini-loaf pans that I got at Cooks' World, and was creating many breads for gifts for people -- for parents, for the neighbors, etc. -- I would take them around. It was lovely to do this. I feel so much gratefulness for people around me.
JANUARY 4th
There was a parents' meeting at TLC.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm at Lauren's house, I have a feeling of peace.
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I found out that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Craig Mullen (youth orchestra parent and also head of the pediatric oncology department). This time he talked about having been convinced to join the medical center orchestra.
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it.
I CONTRA DANCED WITHOUT NADINE
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to pracice and still get to the dance. I also called Bob Fabinski, and let him know teens were coming -- there had been a sour man at the door the last time they'd come. He said he'd make a call.
I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski. That was a great way to handle the problem -- non-confrontational, and just delightful!
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Betty was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing, cooking, the works. Kara met Nadine at the English Composition class at MCC, and have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice food and the company for her. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK
I felt sick, and I was tired, exhausted really, trouble getting rest at night, trouble feeling okay during the day, then ended up with a sore throat, mucous, oh my, awful. And it meant I felt it was important to stay away from Nadine, use even more sanitizing, and so on and on. Oh well, it can happen too.
I took a rest in the middle of the day on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, miserable, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was too weak to pick up in the house, too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine, and was stuck in bed a lot.
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine to take the risk, so she stayed home and did a lot of practicing here, which was very, very nice.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice....
LATER DECEMBER
Slumps, rises, 7-layer dip, On December 24th, New Year's, visits, music, etc.
DECEMBER 24TH -- Nadine had a brief evening slump again, and lay in the study with her head on Barry's lap while I sat at the piano and improvised peaceful music for her. It was a long time since this had happened. I was glad to be able to help her feel better. I looked at her often as I created the music for her. The slump ended in about an hour or two, a relatively short time as these things go. given the huge slugs of big-big-big cvhemo meds she'd gotten in spinal fluid, veins, and mouth the day before, she was doing amazingly well.
We had a late-ish supper -- a steak from the farm-raised beef, a nice thick gravy, and baked sweet potatos, She'd lost about 38 pounds since May.
DECEMBER 25th
SEVEN-LAYER DIP!!! NADINE MADE IT AND ATE WELL. Nadine lovingly made glass casserole dish of 7-layer dip, nice and creamy with refried beans, guacamole, salsa, sour cream, grated cheese, lettuce, olives, and green onions. I had actually suggested it a while earlier, and as Nadine was into recipes, she looked it up online. I braved Wegman's and bought guacamole, sour cream, scallions, organic cheese, two sizes of tortillas and even olives. It was really delicious, and she ate very, very well. She had it with chips, and she had it rolled into huge burritos.
I felt heartened. Meanwhile I baked up cinnamon bread, making a loaf for Victor's family -- he was coming over to practice, and they always brought wonderful gifts. This time they brought fancy chocolates.
THE REST OF THE DAY
I blasted the house to get it clean and neat -- I was so tired of the mess and dirt. It felt excellent to do the job, even scrubbing the ktichen floor.
Victor arrived to practice with Nadine. I heard some surprising cacophony, and wondered what was going on -- I peeked in and found they were working on memorizing the thing. The bread finished just as Victor and his mom left.
Afterwards, a very animated Nadine left with Barry in the rain to go ice skating at an outdoor rink, and returned shortly afterwards, having not skated. Barry wanted to go to an open mike listed in the paper at Spot Coffee, but it was closed. I asked if we could drive around and look at the lights and we did -- it was beautiful seeing the cascade of lights radiating down from the Liberty Pole through the rainy windshiled, and other street scenes -- I loved photographing the images of wonderous lights in the rain. I got to bed about 2AM, way too late.
DECEMBER 26TH
A cold, rainy and wistful morning. But pancakes for the second day in a row were delicious. Maple syrup and berries and nuts. Yay!!
I finally set up the Berkey water filter. I feel I'd been completely irresponsible in allowing us all to drink unfiltered tap water for so long -- about 6 months. Each time I'd poured out water from the tap to drink, I'd have that nagging "I don't want us to drink this" feeling, but still delayed. Maybe it was the temporary moving and maybe it was the overwhelming list of things on my mind, and maybe, most likely really, it was the knowledge that no matter how simple it could seem in theory, the process of researching, choosing, price-checking,ordering, and installing a filter would have to be complicated and time-consuming. And it was. But finally I'd picked the Berkey, and there it was. The first thing that happened was that the taste was metallic, and the receptacle overlowed onto the floor making a huge mess. At least it was a clean mess, since I'd washed the floor.
I practiced again -- it was less than 3 weeks to playing it for her at the Cattaraugus scholarship competition, and it was a "bear" of an accompaniment, and I was going really, really slowly on it. It wasn't always fast (although it had its moments), but it was complex and hard to finger.
Nadine was going to record in Ithaca with her other band on Monday December 28th -- her chemo cycle might make it tricky, but she really wanted to do it, so it might work out -- I'd have to make sure themeds went right htis time. I felt sad that Nadine and I hadn't finished our own CD, which we'd started at the same studio -- I even felt a bit jealous that she was going to record with another group and she and I hadn't worked there since her diagnosis. Oh well, it's not their fault. It means I should call and arrange to take us over to finish our own work.
Nadine spent a long time peacefully knitting -- she has been doing a lot of that, plus chain maille and it was nice to see it happen.
There was a quiet day, and we all went up to Hilton to visit some friends of Barry's, in their 80's, about a half hour away -- the river was behind the house, and we all had excellent talks and fun. It felt like we were out of the city and in a peaceful family situation. The men talked politics and the two "old ladies" (her and me) talked about families, and about when enough talk of politics was enough, at least in our view.
Nadine rested up a lot on the couch, probably with her knitting, and she loved petting the beautiful soft cat -- she said she was getting her "cat fix". She shared some flute with everyone later on.
PREPARING FOR PROKOFIEV As for me, I was doing a lot of practicing on the Prokofiev, a consuming project. I wonder if I'd do this much intense practice if she wasn't needing it. Perhaps I should arrange to do a recital myself. The last few weeks included very intense practice, divided into several sessions per day to get the "equivalent" of more than one day of practice per day; this was ongoing. I felt I HAD to have it right for her competition day, and it was a challenge!!
NADINE OFF TO ITHACA On December 27th, Nadine left with Barry to meet Rachel in Hornell to record in Ithaca, and I had another catch-up day, getting practice and chores done. Nadine had forgotten to bring the hand sanitizer I'd gotten to distribute over there, and they stopped to get some. I don't think much else was eventful. I did fuss to make sure some people there knew she had meds to take, including Will Russell (the engineer, who understood) and Peter Blue, who is an emergency medical technician and whose wife is a nurse. I felt she was in okay hands, but after the last mess of forgotten medicine, I felt compulsive, and sent out an email with her med list. I think Nadine felt I was coddling her way too much. I often tell people that all my checking up is more to make feel better. I think I deserve it.
DECEMBER 28th (Monday) -- Actually a peaceful day by myself. I was still working hard on Prokofiev, and also on catching uo on other chores. I also feel it's important to compile notes on our experiences, and felt seriously behind. Nadine returned on Tuesday morning.
PRACTICE INTERFERES WITH SOME TIME TOGETHER I felt so wrapped up in having to practice the Prokofiev for her competition that I feel that I was neglecting doing things with Nadine that were important too. She wanted me to sit with her and watch a movie together. I felt so driven to practice that I told her I needed to finish my work first. By the time I finished, it was too late to watch the movie together, and I felt VERY sad.
TIME TOGETHER --
I did do some things with Nadine though, and those were glorious. She invited me to knit with her, and that was just stellar to do, sitting down on the couch and creating things.
Another time, she invited me to collage with her. I had generally found collaging not gratifying except for Nadine's company and pleasure in it, but I started to enjoy the collaging as well, and created a nice piece (in my eye) about enjoying nature, and then created a note-card that I'd like to send to Lauren Sample.
She invited me to watch Pride and Prejudice with her and we sat on the couch with it and I enjoyed it so much, as did she, all the frills and deep stuff and misunderstandings and lifestyle things, and dances, and beautiful photography and words. It was wonderful to share that with just us.
NADINE'S WEIGHT UP -- YAY FOR 7-LAYER DIP
Nurse Jessie came on Tuesday December 29th .. NADINE GAINED 6 POUNDS!!! Go, Nadine!
DECEMBER 24TH -- Nadine had a brief evening slump again, and lay in the study with her head on Barry's lap while I sat at the piano and improvised peaceful music for her. It was a long time since this had happened. I was glad to be able to help her feel better. I looked at her often as I created the music for her. The slump ended in about an hour or two, a relatively short time as these things go. given the huge slugs of big-big-big cvhemo meds she'd gotten in spinal fluid, veins, and mouth the day before, she was doing amazingly well.
We had a late-ish supper -- a steak from the farm-raised beef, a nice thick gravy, and baked sweet potatos, She'd lost about 38 pounds since May.
DECEMBER 25th
SEVEN-LAYER DIP!!! NADINE MADE IT AND ATE WELL. Nadine lovingly made glass casserole dish of 7-layer dip, nice and creamy with refried beans, guacamole, salsa, sour cream, grated cheese, lettuce, olives, and green onions. I had actually suggested it a while earlier, and as Nadine was into recipes, she looked it up online. I braved Wegman's and bought guacamole, sour cream, scallions, organic cheese, two sizes of tortillas and even olives. It was really delicious, and she ate very, very well. She had it with chips, and she had it rolled into huge burritos.
I felt heartened. Meanwhile I baked up cinnamon bread, making a loaf for Victor's family -- he was coming over to practice, and they always brought wonderful gifts. This time they brought fancy chocolates.
THE REST OF THE DAY
I blasted the house to get it clean and neat -- I was so tired of the mess and dirt. It felt excellent to do the job, even scrubbing the ktichen floor.
Victor arrived to practice with Nadine. I heard some surprising cacophony, and wondered what was going on -- I peeked in and found they were working on memorizing the thing. The bread finished just as Victor and his mom left.
Afterwards, a very animated Nadine left with Barry in the rain to go ice skating at an outdoor rink, and returned shortly afterwards, having not skated. Barry wanted to go to an open mike listed in the paper at Spot Coffee, but it was closed. I asked if we could drive around and look at the lights and we did -- it was beautiful seeing the cascade of lights radiating down from the Liberty Pole through the rainy windshiled, and other street scenes -- I loved photographing the images of wonderous lights in the rain. I got to bed about 2AM, way too late.
DECEMBER 26TH
A cold, rainy and wistful morning. But pancakes for the second day in a row were delicious. Maple syrup and berries and nuts. Yay!!
I finally set up the Berkey water filter. I feel I'd been completely irresponsible in allowing us all to drink unfiltered tap water for so long -- about 6 months. Each time I'd poured out water from the tap to drink, I'd have that nagging "I don't want us to drink this" feeling, but still delayed. Maybe it was the temporary moving and maybe it was the overwhelming list of things on my mind, and maybe, most likely really, it was the knowledge that no matter how simple it could seem in theory, the process of researching, choosing, price-checking,ordering, and installing a filter would have to be complicated and time-consuming. And it was. But finally I'd picked the Berkey, and there it was. The first thing that happened was that the taste was metallic, and the receptacle overlowed onto the floor making a huge mess. At least it was a clean mess, since I'd washed the floor.
I practiced again -- it was less than 3 weeks to playing it for her at the Cattaraugus scholarship competition, and it was a "bear" of an accompaniment, and I was going really, really slowly on it. It wasn't always fast (although it had its moments), but it was complex and hard to finger.
Nadine was going to record in Ithaca with her other band on Monday December 28th -- her chemo cycle might make it tricky, but she really wanted to do it, so it might work out -- I'd have to make sure themeds went right htis time. I felt sad that Nadine and I hadn't finished our own CD, which we'd started at the same studio -- I even felt a bit jealous that she was going to record with another group and she and I hadn't worked there since her diagnosis. Oh well, it's not their fault. It means I should call and arrange to take us over to finish our own work.
Nadine spent a long time peacefully knitting -- she has been doing a lot of that, plus chain maille and it was nice to see it happen.
There was a quiet day, and we all went up to Hilton to visit some friends of Barry's, in their 80's, about a half hour away -- the river was behind the house, and we all had excellent talks and fun. It felt like we were out of the city and in a peaceful family situation. The men talked politics and the two "old ladies" (her and me) talked about families, and about when enough talk of politics was enough, at least in our view.
Nadine rested up a lot on the couch, probably with her knitting, and she loved petting the beautiful soft cat -- she said she was getting her "cat fix". She shared some flute with everyone later on.
PREPARING FOR PROKOFIEV As for me, I was doing a lot of practicing on the Prokofiev, a consuming project. I wonder if I'd do this much intense practice if she wasn't needing it. Perhaps I should arrange to do a recital myself. The last few weeks included very intense practice, divided into several sessions per day to get the "equivalent" of more than one day of practice per day; this was ongoing. I felt I HAD to have it right for her competition day, and it was a challenge!!
NADINE OFF TO ITHACA On December 27th, Nadine left with Barry to meet Rachel in Hornell to record in Ithaca, and I had another catch-up day, getting practice and chores done. Nadine had forgotten to bring the hand sanitizer I'd gotten to distribute over there, and they stopped to get some. I don't think much else was eventful. I did fuss to make sure some people there knew she had meds to take, including Will Russell (the engineer, who understood) and Peter Blue, who is an emergency medical technician and whose wife is a nurse. I felt she was in okay hands, but after the last mess of forgotten medicine, I felt compulsive, and sent out an email with her med list. I think Nadine felt I was coddling her way too much. I often tell people that all my checking up is more to make feel better. I think I deserve it.
DECEMBER 28th (Monday) -- Actually a peaceful day by myself. I was still working hard on Prokofiev, and also on catching uo on other chores. I also feel it's important to compile notes on our experiences, and felt seriously behind. Nadine returned on Tuesday morning.
PRACTICE INTERFERES WITH SOME TIME TOGETHER I felt so wrapped up in having to practice the Prokofiev for her competition that I feel that I was neglecting doing things with Nadine that were important too. She wanted me to sit with her and watch a movie together. I felt so driven to practice that I told her I needed to finish my work first. By the time I finished, it was too late to watch the movie together, and I felt VERY sad.
TIME TOGETHER --
I did do some things with Nadine though, and those were glorious. She invited me to knit with her, and that was just stellar to do, sitting down on the couch and creating things.
Another time, she invited me to collage with her. I had generally found collaging not gratifying except for Nadine's company and pleasure in it, but I started to enjoy the collaging as well, and created a nice piece (in my eye) about enjoying nature, and then created a note-card that I'd like to send to Lauren Sample.
She invited me to watch Pride and Prejudice with her and we sat on the couch with it and I enjoyed it so much, as did she, all the frills and deep stuff and misunderstandings and lifestyle things, and dances, and beautiful photography and words. It was wonderful to share that with just us.
NADINE'S WEIGHT UP -- YAY FOR 7-LAYER DIP
Nurse Jessie came on Tuesday December 29th .. NADINE GAINED 6 POUNDS!!! Go, Nadine!
Monday, January 25, 2010
END OF AN ERA -- THE LAST SPINAL-PLUS-DOXORUBICIN (BIG-BIG-BIG) CHEMO (Followed by Sushi Party)
The last Spinal-Plus-Doxyrubicin etc. happened on December 23rd! Nadine is also nearing the end of her "Consolidation" phase of chemo and will soon be in the next phase, "maintenance" -- still substantial, but with no more doxorubicin or asparaginase. After this big-big-chemo, only two more doses of doxorubicin were left, and about 6 more asparaginase. Also in the new phase she'll still get intrathecal spinal injections, but every 18 weeks instead of every 9.
THE CYCLE WENT WITHOUT DELAYS!! For this monumental final Big-Big-Chemo her counts went up on time!!!! The APC was even up at 1300, over the required amount of 1000! We found that out Wednesday morning.
Clinic was at 9:30 AM, early as usual since Nadine couldn't eat in the morning. Margaret emailed that Nadine's ANC was 1300, 300 over the required amount. Another freezy, icy morning.
Nadine went off into the procedure room, and there was Dr. Andrea Hinkle, the stately yet cheery doctor who had orchestrated the treatment for Nadine's medical crisis of sepsis in the ICU -- apaprently she takes a stint in the procedure room perioidcally.
DOCTOR SAID NADINE WORKED TO HEAL
I told Dr. Hinkle how much it had meant to me how she'd handled Nadine's crisis, and she replied that Nadine had done most of the work.
The spinal fluid aspiration and injection went as always -- this time Nadine did little oohing and ahhing as she'd done during the last procedure. She lay still, curled up on her side (as positioned by the nurse). Curled up under the cover with her fuzzy bald head, she sometims reminded me of a sweet baby, as I watched her underneath the cover.
Margaret, appropriately garbed, did the usual, oozing competence. She painted Nadine's back with something that looked like Betadine, inserted a scarily long needle or catheter, and attached a tube into which Nadine's crystalline spinal fluid dripped out, slow-slow-slowly, tiny drops in slow succession. This wasn't true of everyone, but Nadine's went slow. Then Margaret injected the straw-yellow methatrexate (which looked like dilute urine to me), the hydrocortisone, and the cytarabine into the spinal fluid, removed the apparatur, and placed a piece of gauze over the point of insertion.
All left except Dr. Hinkle, whom I asked if I could have a photo for our hospital album -- she looked so festive with her smooth dark hair and bright winter-patterned cardigan. We chatted some -- She turned out to enjoy music as well, and had just fallen in love with the sound of an oboe at an RPO concert.
After the procedure, we were escorted to Treatment Room 7, with its comfortable chairs, the super-duper one for Nadine and the "Parent Chair". Nadine got her IV chemo-meds through her port -- dex, dox and vincristine.
While we were there, we watched Mary Poppins together -- it had been my pick this time, hilarious and sweet with plenty of barbs about stuffy, unappreciative parents and greedy bankers. I saw Nadine grinning during some of it.
Another sign that I'm aging -- when I used to watch Julie Andrews on film, she seemed so old to me -- this time she looked awfully young.
Nadine started to feel shaky in the treatment room, and I was concerned even though it was normal.
An era over.
NADINE'S WEIGHT AGAIN
I was really worrying that Nadine's weight had to do with the cancer -- she seemed to be eating more than her weight would indicate. There were suggestions of mashed potatoes, gravy, cream, rich food, evaporated milk, etc. And no more neutropenic diet for the most psrt -- maple syrup, nuts, all of it were okay again.
MED DOSES -- I asked if Nadine's medicine doeses should be raised again, as her chemo was being done on time; I was told, however, that the doses would still stay the same, adjusted for weight as always.
AFTERWARDS, A FINAL UNPACKING
We were thinking of going to 414 to visit Amber, from TLC, who was in the hospital, but Nadine wasn't up to it after the Big Big Chemo and also Nadine was worried about any chance of giving Amber a cold (although I didn't think she had one), and we left.
We stopped at the Kanack School, where I thought we'd left a few things after we'd moved out. I was shocked when I looked into the dresser Nadine had used -- it was stuffed with Nadine's clothing tha tI didn't even realize was there, and when I looked in the closet of the room I'd used, it was stuffed with my clothing that I hadn't remebered was there either. Nadine triumphantly exclaimed that she'd found her missing journal. I decided to clean out all our things, which took about an hour of going up and down stairs, but finally it's all cleaned out. One more chore finished, this particular chore being one I hadn't even known existed.
The tedious emotion of moving from place to place flooded me again, and I was disgusted, disgruntled and dismayed. There were no boxes, but Nadine thought of stuffing clothing into pillowcases. We ended up with about 10 fully stuffed pillowcases in addition to a bunch of papers and a Therm-A-Rest mattress pad.
MORE STUFF TO DO
After we arrived home I was stuck helping Nadine write an answer to the Michigan composition teacher's email to Nadine after receiving her composition portfolio.
He had emailed and said he had liked listening to the portfolio -- he wrote that he'd liked listening to it, and that it was the only applkcation he'd ever received that had traditional Irish tunes in it.
However, he wanted to know what degree she was applying for, and he was wondering why the rest of Nadine's application wasn't in (he didn't realize the dean had told her to get the composition portfolio in first). Nadine was on the couch and not up to drafting a letter, and it had to go in. I didn't want to draft the letter for her, and wanted to relax before we went to the sughi party with the Klassens and the Waymans that night. Nadine kept finding fault with parts of my draft, whihc was her right, but I felt hurried to just get the thing over with. It all took about an hour and there was no time left to rest up. of course, wehn it was finally out, I got an automated reply that Prof. Evans was away from his email until January 4th anyway. By then, I was cranky and angry at myself for not having gotten this over with earlier and for not having simply let the prof. know that I was writing the letter because Nadine wasn't feeling up to wriing it. Nadine was on the couch in tears, and I felt paralyzed.
SUSHI PARTY
I realized it was time for the sushi party at the Klassen household, somethining Nadine had looked forward to a huge amount. However, she said she wasn't looking forward to it, although she didn't know why. If elt "torn" about styaing home with her or insisting she go -- finally I told her it was imortant to go to it, and she went. I felt like a fool an an ass for doing it.
It turned out Betty had had a cold, and she ended up not going to the party, and one reason I'd insisted on going was to have an evening with all the families together. And now I was stuck at a party I didn't think we should have gone to.
Hwoever, Nadine perked up and had a wonderfl time with Sylvia and Claire and the rest of them; preparing the sushi was fun as alwyas; Claire, Sylvia and Nadine did the usual compliment of hugging.
HOME AND MORE FOOD< MORE CAREGIVING
After we came home, I expected to finally get some rest, but Nadine was hungry again when we got back, so I cooked fried sweet potato for her and prepared some Spira-Teen in powdered soymilk (she couldn't have dairy because she couldn't take mercaptopurine with dairy). I felt annoyed that after we'd had "dinner" I still had to cook late in the evening. although I was gratified I could create something nurtrious and high-calorie with the veyr limited food inventory I had.
I was feeling so darn blue and band about myself. Objectively, I know I've done plenty of decent caregiving and I've had a lot to do under pressure. People have beenwonderful assuring me of that. Yet, when I make a mistake, or think I might have made one, I take it hard, especially if it concerns Nadine. This sadly can make me cranky enough to feel I've made even more mistakes. I was still worried that I'd overdone it by urging her to go to that evening party and possibly tiring her out.
Nadine, meanwhile, seemed okay, And in fact she turned out okay -- no ill effects at all. SO -- we ended up with an okay Nadine and an cranky and disgruntled me. Oh well, I guess it happens.
THE CYCLE WENT WITHOUT DELAYS!! For this monumental final Big-Big-Chemo her counts went up on time!!!! The APC was even up at 1300, over the required amount of 1000! We found that out Wednesday morning.
Clinic was at 9:30 AM, early as usual since Nadine couldn't eat in the morning. Margaret emailed that Nadine's ANC was 1300, 300 over the required amount. Another freezy, icy morning.
Nadine went off into the procedure room, and there was Dr. Andrea Hinkle, the stately yet cheery doctor who had orchestrated the treatment for Nadine's medical crisis of sepsis in the ICU -- apaprently she takes a stint in the procedure room perioidcally.
DOCTOR SAID NADINE WORKED TO HEAL
I told Dr. Hinkle how much it had meant to me how she'd handled Nadine's crisis, and she replied that Nadine had done most of the work.
The spinal fluid aspiration and injection went as always -- this time Nadine did little oohing and ahhing as she'd done during the last procedure. She lay still, curled up on her side (as positioned by the nurse). Curled up under the cover with her fuzzy bald head, she sometims reminded me of a sweet baby, as I watched her underneath the cover.
Margaret, appropriately garbed, did the usual, oozing competence. She painted Nadine's back with something that looked like Betadine, inserted a scarily long needle or catheter, and attached a tube into which Nadine's crystalline spinal fluid dripped out, slow-slow-slowly, tiny drops in slow succession. This wasn't true of everyone, but Nadine's went slow. Then Margaret injected the straw-yellow methatrexate (which looked like dilute urine to me), the hydrocortisone, and the cytarabine into the spinal fluid, removed the apparatur, and placed a piece of gauze over the point of insertion.
All left except Dr. Hinkle, whom I asked if I could have a photo for our hospital album -- she looked so festive with her smooth dark hair and bright winter-patterned cardigan. We chatted some -- She turned out to enjoy music as well, and had just fallen in love with the sound of an oboe at an RPO concert.
After the procedure, we were escorted to Treatment Room 7, with its comfortable chairs, the super-duper one for Nadine and the "Parent Chair". Nadine got her IV chemo-meds through her port -- dex, dox and vincristine.
While we were there, we watched Mary Poppins together -- it had been my pick this time, hilarious and sweet with plenty of barbs about stuffy, unappreciative parents and greedy bankers. I saw Nadine grinning during some of it.
Another sign that I'm aging -- when I used to watch Julie Andrews on film, she seemed so old to me -- this time she looked awfully young.
Nadine started to feel shaky in the treatment room, and I was concerned even though it was normal.
An era over.
NADINE'S WEIGHT AGAIN
I was really worrying that Nadine's weight had to do with the cancer -- she seemed to be eating more than her weight would indicate. There were suggestions of mashed potatoes, gravy, cream, rich food, evaporated milk, etc. And no more neutropenic diet for the most psrt -- maple syrup, nuts, all of it were okay again.
MED DOSES -- I asked if Nadine's medicine doeses should be raised again, as her chemo was being done on time; I was told, however, that the doses would still stay the same, adjusted for weight as always.
AFTERWARDS, A FINAL UNPACKING
We were thinking of going to 414 to visit Amber, from TLC, who was in the hospital, but Nadine wasn't up to it after the Big Big Chemo and also Nadine was worried about any chance of giving Amber a cold (although I didn't think she had one), and we left.
We stopped at the Kanack School, where I thought we'd left a few things after we'd moved out. I was shocked when I looked into the dresser Nadine had used -- it was stuffed with Nadine's clothing tha tI didn't even realize was there, and when I looked in the closet of the room I'd used, it was stuffed with my clothing that I hadn't remebered was there either. Nadine triumphantly exclaimed that she'd found her missing journal. I decided to clean out all our things, which took about an hour of going up and down stairs, but finally it's all cleaned out. One more chore finished, this particular chore being one I hadn't even known existed.
The tedious emotion of moving from place to place flooded me again, and I was disgusted, disgruntled and dismayed. There were no boxes, but Nadine thought of stuffing clothing into pillowcases. We ended up with about 10 fully stuffed pillowcases in addition to a bunch of papers and a Therm-A-Rest mattress pad.
MORE STUFF TO DO
After we arrived home I was stuck helping Nadine write an answer to the Michigan composition teacher's email to Nadine after receiving her composition portfolio.
He had emailed and said he had liked listening to the portfolio -- he wrote that he'd liked listening to it, and that it was the only applkcation he'd ever received that had traditional Irish tunes in it.
However, he wanted to know what degree she was applying for, and he was wondering why the rest of Nadine's application wasn't in (he didn't realize the dean had told her to get the composition portfolio in first). Nadine was on the couch and not up to drafting a letter, and it had to go in. I didn't want to draft the letter for her, and wanted to relax before we went to the sughi party with the Klassens and the Waymans that night. Nadine kept finding fault with parts of my draft, whihc was her right, but I felt hurried to just get the thing over with. It all took about an hour and there was no time left to rest up. of course, wehn it was finally out, I got an automated reply that Prof. Evans was away from his email until January 4th anyway. By then, I was cranky and angry at myself for not having gotten this over with earlier and for not having simply let the prof. know that I was writing the letter because Nadine wasn't feeling up to wriing it. Nadine was on the couch in tears, and I felt paralyzed.
SUSHI PARTY
I realized it was time for the sushi party at the Klassen household, somethining Nadine had looked forward to a huge amount. However, she said she wasn't looking forward to it, although she didn't know why. If elt "torn" about styaing home with her or insisting she go -- finally I told her it was imortant to go to it, and she went. I felt like a fool an an ass for doing it.
It turned out Betty had had a cold, and she ended up not going to the party, and one reason I'd insisted on going was to have an evening with all the families together. And now I was stuck at a party I didn't think we should have gone to.
Hwoever, Nadine perked up and had a wonderfl time with Sylvia and Claire and the rest of them; preparing the sushi was fun as alwyas; Claire, Sylvia and Nadine did the usual compliment of hugging.
HOME AND MORE FOOD< MORE CAREGIVING
After we came home, I expected to finally get some rest, but Nadine was hungry again when we got back, so I cooked fried sweet potato for her and prepared some Spira-Teen in powdered soymilk (she couldn't have dairy because she couldn't take mercaptopurine with dairy). I felt annoyed that after we'd had "dinner" I still had to cook late in the evening. although I was gratified I could create something nurtrious and high-calorie with the veyr limited food inventory I had.
I was feeling so darn blue and band about myself. Objectively, I know I've done plenty of decent caregiving and I've had a lot to do under pressure. People have beenwonderful assuring me of that. Yet, when I make a mistake, or think I might have made one, I take it hard, especially if it concerns Nadine. This sadly can make me cranky enough to feel I've made even more mistakes. I was still worried that I'd overdone it by urging her to go to that evening party and possibly tiring her out.
Nadine, meanwhile, seemed okay, And in fact she turned out okay -- no ill effects at all. SO -- we ended up with an okay Nadine and an cranky and disgruntled me. Oh well, I guess it happens.
Late December
On December 18th, Nadine finally got to visit with her friend Sylvia, the first time those two got together since Sylvia went to college.
The day before that, she'd had a quick transfusion. It's very rare that she has a quick transfusion -- usually she's in there a long time. That one, though, just worked. Why don't they all go so smoothly? I'm not going to answer that question.
There was a joyful reunion between the two girls, after which they trotted off and renewed themselves. As for me, I visited with Sue, dried the dishes while she washed them, and helped her peel and chop butternut squash at the table, which is the kind of interaction I just love.
I drove off into the cold night and had a lovely night alone, knowing Nadine was in excellent hands. I had a nice pracice session on the piano, then sat on the couch, realized how exhausted I was, and went to bed early.
The next day (Sunday January 19th), I got up still feeling tired.
Nadine arrived looking happy, and then things deteriorated. She announced she'd forgotten to take one of her important medicines. And then she forgot it again, and didn't get it until after her Rochester Philharmonic Youth Orchestra rehearsal.
To make matters worse, she had gauze rather than the Allevan pad on the wound site -- I was still worried about it getting infected after all these months and months of care, when it was just about to be healed. She in turn was tired of wearing those bandages, and refused change it, insisting it was fine. I said I wasn't taking her to her rehearsal until the bandage was changed. She blew up at me, and finally she very grudgingly let me change the bandage. We were both tense, which is a perfect way to bungle things -- I somehow squirted saline all over the place, drenching the area around Nadine and infuriating her (at least I got it where it belonged, right? }
When I questioned Nadine about the missed medication, she said something about being self-conscious with all those medicines at a friend's house.
WE BOTH NEEDED SPACE -- AND WE HUGGED
Nadine said she was looking forward to spending a night away from me. I said that I was looking forward to it as well. Suddenly the tension dissipated as Nadine looked knowingly and lovingly at me. We hugged.
_______
Nadine told me that being inside the house has felt uncomfortable and confining, and that she misses being "on the move". she said she'd like to open the windows, but sadly we can't have that in the middle of the winter. She said that driving to Sylvia and Claire's place was the longest drive she'd taken in a while, and that she misses traveling like we used to do.
Nadine was late to rehearsal, and I was late to the pleasantly crowded neighborhood "open house" party across the street that I'd been given an invitation to. I went, and felt like I was in a different world of designer furniture and up-and-coming (although congenial) young professionals, although I loved the book on the desk about the joys of handwritten notes. It reminded me that I would like to write some. There was amazing food, and a group came together and sang "Chestnuts Roasting on an Open Fire", and then "Let It Snow", two songs I confess are real favorites. I felt reassured that somehow some relics of what might have been a more peaceful past still thrived.
PARTIES AND PHOTO-SHOOT WITH CARRIE
Nadine, Claire, and Sylvia were going to do a "photo shoot" at Carrie's studio the next day, and prepared some stuff for it. Three friends with their pajamas at a photo-shoot, oh my.
Nadine's youth orchestra also had a party that day, which was much fun for her. and her friend Louisa invited her to be her roommate on the orchestra's April tour to Quebec.
Nadine, Claire and Sylvia had a "photo-shoot" with Carrie and Carrie's studio, with the girls driving in on their own; I had to get Nadine's medicines to the studio to take to Sue's house, as Jessie, the visiting nurse, was going over there to do blood tests. When I met them over there to deliver meds, they were having a fine time, including mixing up socks.
As for me, I did a bunch of work during the day, and also had frustrations -- the first few days alone, and I had so many real and perceived chores. It took over an hour on Mondahy to find the pringer didn't work -- all I was trying to do was communicate with the Hinsdale district about Nadine's paperwork, and it turned into a morning ordeal which led to me emailing the letter to Fedex-Kinko's to print up. I also wanted to cactch up on myh blog" as I had felt so bad about being behind on writing. I did it "with feeling" and was amazed at what I could remember. I also practiced hard at the piano and actually regained some lost technique. A day alone to catch up was nice.
FIRST DAY OF WINTER PASSED FORGOTTEN
I noticed that I'd let the Solstice slip by. So many other things were going on, that my "traditional" points that I notice were almost forgotten. The official beginning of winter. When Nadine was little, I used to mark it by making cut-out "snowflakes" with Nadine and tossing or dropping them so they floated through the air to the floor.
BLOOD CHECKING FOR CHEMO, and the Day
Jessie checked Nadine's blood again, but there was no result there. This was going to be BIG-BIG CHemo, complete with Intrathecal chemo plus dox-dex-vincristine. Because her counts had been 1000 the last week (amazing!), I was pretty sure she'd get it, but it would have been nice to know, as she couldn't eat early in the morning if she got it.
I got a phone call -- Nadine had forgotten her Prilosec for her reflux, and had a tummy ache, so I hotfooted it to Sue and Sylvia's house early, where Nadine was staying, and bought some Prilosec on the way. So no more practicing piano for me. I visited and took Nadine home before the TLC meeting.
Nadine was hungry again -- we went to Panera on the way home and Nadine got her beloved soup -- we sat togehter, with me ordering black bean soup and she ordering cream of chicken soup -- I just wanted her to EAT. She had samplings of each soup but had a total of less than I wanted her to have.
TLC MEETING
On Tuesday December 22nd there was another TLC meeting, which I thought would be introspective, but there were happy hugging girls at it, one coming out to hug me. The mood was jovial, with the usual cookies there. I wanted to connect with the other moms -- I suspect this would be nice for all of us. I've been thinking of putting together a parents'/caregivers/ network and it looks like we're approaching the time for it. There was a person who works with a national talk show, a vivacious black-haired young woman from Fairport.
Lauren told Nadine she should put some "meat on her bones" and said she'd love to give Nadine some of her "meat" (fat); I said I'd like to do the same. We talked of giving Nadine "rich" food and of me trying to avoid eating too much of it.
On a serious note, Nadine was looking thin again, and it was worrying me -- she was in excellent physical shape strength-wise, but the weight loss wasn't abating.
QUOTE FROM NADINE ON A LONG NIGHT WALK
Nadine wanted to take a long walk outside, and it was pleasant walking outside together on the cold-cold night.
QUOTE: Me: Can you tell it's slippery.
She: I don't know. I wasn't trying to slip.
THE NIGHT
Nadine burst into tears for no apparent reason.
BANDAGES
The bandage was entirely off again! I told her it mattered, and she finally let me put it back on. I was so flustered that I dropped the saline syringe, and had to use a second one. Me and that saline. It stays sterile, it stays safe, but I've lost count of the messes I've made.
AND FINALLY THE BANDAGES ARE OVER
Shortly after that, the wound was obviously healed,and the bandages came off for goo. Yay!!!!!!!!!
The day before that, she'd had a quick transfusion. It's very rare that she has a quick transfusion -- usually she's in there a long time. That one, though, just worked. Why don't they all go so smoothly? I'm not going to answer that question.
There was a joyful reunion between the two girls, after which they trotted off and renewed themselves. As for me, I visited with Sue, dried the dishes while she washed them, and helped her peel and chop butternut squash at the table, which is the kind of interaction I just love.
I drove off into the cold night and had a lovely night alone, knowing Nadine was in excellent hands. I had a nice pracice session on the piano, then sat on the couch, realized how exhausted I was, and went to bed early.
The next day (Sunday January 19th), I got up still feeling tired.
Nadine arrived looking happy, and then things deteriorated. She announced she'd forgotten to take one of her important medicines. And then she forgot it again, and didn't get it until after her Rochester Philharmonic Youth Orchestra rehearsal.
To make matters worse, she had gauze rather than the Allevan pad on the wound site -- I was still worried about it getting infected after all these months and months of care, when it was just about to be healed. She in turn was tired of wearing those bandages, and refused change it, insisting it was fine. I said I wasn't taking her to her rehearsal until the bandage was changed. She blew up at me, and finally she very grudgingly let me change the bandage. We were both tense, which is a perfect way to bungle things -- I somehow squirted saline all over the place, drenching the area around Nadine and infuriating her (at least I got it where it belonged, right? }
When I questioned Nadine about the missed medication, she said something about being self-conscious with all those medicines at a friend's house.
WE BOTH NEEDED SPACE -- AND WE HUGGED
Nadine said she was looking forward to spending a night away from me. I said that I was looking forward to it as well. Suddenly the tension dissipated as Nadine looked knowingly and lovingly at me. We hugged.
_______
Nadine told me that being inside the house has felt uncomfortable and confining, and that she misses being "on the move". she said she'd like to open the windows, but sadly we can't have that in the middle of the winter. She said that driving to Sylvia and Claire's place was the longest drive she'd taken in a while, and that she misses traveling like we used to do.
Nadine was late to rehearsal, and I was late to the pleasantly crowded neighborhood "open house" party across the street that I'd been given an invitation to. I went, and felt like I was in a different world of designer furniture and up-and-coming (although congenial) young professionals, although I loved the book on the desk about the joys of handwritten notes. It reminded me that I would like to write some. There was amazing food, and a group came together and sang "Chestnuts Roasting on an Open Fire", and then "Let It Snow", two songs I confess are real favorites. I felt reassured that somehow some relics of what might have been a more peaceful past still thrived.
PARTIES AND PHOTO-SHOOT WITH CARRIE
Nadine, Claire, and Sylvia were going to do a "photo shoot" at Carrie's studio the next day, and prepared some stuff for it. Three friends with their pajamas at a photo-shoot, oh my.
Nadine's youth orchestra also had a party that day, which was much fun for her. and her friend Louisa invited her to be her roommate on the orchestra's April tour to Quebec.
Nadine, Claire and Sylvia had a "photo-shoot" with Carrie and Carrie's studio, with the girls driving in on their own; I had to get Nadine's medicines to the studio to take to Sue's house, as Jessie, the visiting nurse, was going over there to do blood tests. When I met them over there to deliver meds, they were having a fine time, including mixing up socks.
As for me, I did a bunch of work during the day, and also had frustrations -- the first few days alone, and I had so many real and perceived chores. It took over an hour on Mondahy to find the pringer didn't work -- all I was trying to do was communicate with the Hinsdale district about Nadine's paperwork, and it turned into a morning ordeal which led to me emailing the letter to Fedex-Kinko's to print up. I also wanted to cactch up on myh blog" as I had felt so bad about being behind on writing. I did it "with feeling" and was amazed at what I could remember. I also practiced hard at the piano and actually regained some lost technique. A day alone to catch up was nice.
FIRST DAY OF WINTER PASSED FORGOTTEN
I noticed that I'd let the Solstice slip by. So many other things were going on, that my "traditional" points that I notice were almost forgotten. The official beginning of winter. When Nadine was little, I used to mark it by making cut-out "snowflakes" with Nadine and tossing or dropping them so they floated through the air to the floor.
BLOOD CHECKING FOR CHEMO, and the Day
Jessie checked Nadine's blood again, but there was no result there. This was going to be BIG-BIG CHemo, complete with Intrathecal chemo plus dox-dex-vincristine. Because her counts had been 1000 the last week (amazing!), I was pretty sure she'd get it, but it would have been nice to know, as she couldn't eat early in the morning if she got it.
I got a phone call -- Nadine had forgotten her Prilosec for her reflux, and had a tummy ache, so I hotfooted it to Sue and Sylvia's house early, where Nadine was staying, and bought some Prilosec on the way. So no more practicing piano for me. I visited and took Nadine home before the TLC meeting.
Nadine was hungry again -- we went to Panera on the way home and Nadine got her beloved soup -- we sat togehter, with me ordering black bean soup and she ordering cream of chicken soup -- I just wanted her to EAT. She had samplings of each soup but had a total of less than I wanted her to have.
TLC MEETING
On Tuesday December 22nd there was another TLC meeting, which I thought would be introspective, but there were happy hugging girls at it, one coming out to hug me. The mood was jovial, with the usual cookies there. I wanted to connect with the other moms -- I suspect this would be nice for all of us. I've been thinking of putting together a parents'/caregivers/ network and it looks like we're approaching the time for it. There was a person who works with a national talk show, a vivacious black-haired young woman from Fairport.
Lauren told Nadine she should put some "meat on her bones" and said she'd love to give Nadine some of her "meat" (fat); I said I'd like to do the same. We talked of giving Nadine "rich" food and of me trying to avoid eating too much of it.
On a serious note, Nadine was looking thin again, and it was worrying me -- she was in excellent physical shape strength-wise, but the weight loss wasn't abating.
QUOTE FROM NADINE ON A LONG NIGHT WALK
Nadine wanted to take a long walk outside, and it was pleasant walking outside together on the cold-cold night.
QUOTE: Me: Can you tell it's slippery.
She: I don't know. I wasn't trying to slip.
THE NIGHT
Nadine burst into tears for no apparent reason.
BANDAGES
The bandage was entirely off again! I told her it mattered, and she finally let me put it back on. I was so flustered that I dropped the saline syringe, and had to use a second one. Me and that saline. It stays sterile, it stays safe, but I've lost count of the messes I've made.
AND FINALLY THE BANDAGES ARE OVER
Shortly after that, the wound was obviously healed,and the bandages came off for goo. Yay!!!!!!!!!
Monday, January 18, 2010
Nadine's Turn to Blow Up, We Reconcile Again.
Nadine had a wonderful visit with her friend Sylvia, who was home for college. After she came home the next day (Sunday Dec 20th), it turned out that she hadn't taken one of her important medicines in the morning. She told me she was self-conscious about taking medicines over there -- this surprised me as everyone there knows her well. Then, Nadine went to the orchestra rehearsal, and forgot again to take the medicine.
She also came home with gauze rather than the Allevan pad on her wound site. Yes it was almost healed, or maybe even all healed, but Beth Schempp, the wound care specialist, had said to leave it on. I told Nadine to please change it, and she went into the bathroom and changed the gauze to more gauze instead of the Allevan.
I asked myself if this worth risking a fight over, decided yes, and told her I wasn't driving the car until she put the Allevan pad on. I just couldn't in good conscience risk the wound getting infected after 5 months of taking care of it.
She blew up at me, big time -- raising her voice, the whole "nine yards".
Finally she allowed me to change the bandage -- the interaction turned into a miserable operation, even though it was a lot easier than it used to be when we had to swab out the mess. I tried to rinse the wound with saline, and it squirted all over the place. Nadine had left the proper tape at Sylvia's house, so we had to use something else.
I guess Nadine and I are "tied" now -- each of us had one "blow up".
She also came home with gauze rather than the Allevan pad on her wound site. Yes it was almost healed, or maybe even all healed, but Beth Schempp, the wound care specialist, had said to leave it on. I told Nadine to please change it, and she went into the bathroom and changed the gauze to more gauze instead of the Allevan.
I asked myself if this worth risking a fight over, decided yes, and told her I wasn't driving the car until she put the Allevan pad on. I just couldn't in good conscience risk the wound getting infected after 5 months of taking care of it.
She blew up at me, big time -- raising her voice, the whole "nine yards".
Finally she allowed me to change the bandage -- the interaction turned into a miserable operation, even though it was a lot easier than it used to be when we had to swab out the mess. I tried to rinse the wound with saline, and it squirted all over the place. Nadine had left the proper tape at Sylvia's house, so we had to use something else.
I guess Nadine and I are "tied" now -- each of us had one "blow up".
Sunday, January 17, 2010
A Cranky Evening -- Mom Blows It And Blows Up -- Later, a Nice Party
A CRANKY EVENING, MOM BLOWS IT AND BLOWS UP!
My Friday evening mess-up started when I decided to squeeze in some errands before going to the Thurstons' potluck and music party, to which I'd been looking forward. I had wanted to get some piano practice in before we went. When I came back, Nadine was using the computer, which I thought I needed. I sulked; I was in a Mood. A succession of other things, probably minor, went wrong; I was tense, and Nadine seemed agitated as well, and perhaps said a few choice words of comment. I finally blew up at her. -- I mean, I even raised my voice. I felt like I hated myself and yet the pent-up tension got the better of me.
I finally got the "lid" back onto myself and stopped. Nadine looked at me with concern and told me she loved me. She obviously felt compassion (although she hadn't at first), as if she knew I didn't want to be reacting the way I did. It was a moving moment as we looked at each other.
I stood there for a while, and then we got ready for the dinner party at the Thurston house -- I took a shower, Nadine got ready, and off we went.
A WONDERFUL PARTY ANYWAY
It was a wonderful party -- the Thurstons plus Alice with Daphne and Alexander, and another family; super company, super dinner at their long table, the first time we'd been at the Thurston house since we had stayed with them. Hassler made super spice cookies; Margaret made cobbler; all the kids made whipped cream, taking turns gleefully using the whisk (including Nadine). There was fun talk. Later on the kids visited and played hide and seek -- the house was excellent for it. And they all did some fiddling together as well.
After we came home, we both were a little "off" again, but we went to bed after I took my vitamins and she took her medicines. She snuggled into bed with me for a while, and after that I couldn't rest.
Soon afterwards, she snuggled with me on the downstairs loveseat, and we all were relaxed again.
My Friday evening mess-up started when I decided to squeeze in some errands before going to the Thurstons' potluck and music party, to which I'd been looking forward. I had wanted to get some piano practice in before we went. When I came back, Nadine was using the computer, which I thought I needed. I sulked; I was in a Mood. A succession of other things, probably minor, went wrong; I was tense, and Nadine seemed agitated as well, and perhaps said a few choice words of comment. I finally blew up at her. -- I mean, I even raised my voice. I felt like I hated myself and yet the pent-up tension got the better of me.
I finally got the "lid" back onto myself and stopped. Nadine looked at me with concern and told me she loved me. She obviously felt compassion (although she hadn't at first), as if she knew I didn't want to be reacting the way I did. It was a moving moment as we looked at each other.
I stood there for a while, and then we got ready for the dinner party at the Thurston house -- I took a shower, Nadine got ready, and off we went.
A WONDERFUL PARTY ANYWAY
It was a wonderful party -- the Thurstons plus Alice with Daphne and Alexander, and another family; super company, super dinner at their long table, the first time we'd been at the Thurston house since we had stayed with them. Hassler made super spice cookies; Margaret made cobbler; all the kids made whipped cream, taking turns gleefully using the whisk (including Nadine). There was fun talk. Later on the kids visited and played hide and seek -- the house was excellent for it. And they all did some fiddling together as well.
After we came home, we both were a little "off" again, but we went to bed after I took my vitamins and she took her medicines. She snuggled into bed with me for a while, and after that I couldn't rest.
Soon afterwards, she snuggled with me on the downstairs loveseat, and we all were relaxed again.
Winning the Concerto Competition
Nadine and her buddy Victor won the Rochester Philharmonic Youth Orchestra Concerto Competition on Dec. 10th. This means they'll get to play the Cimerosa Concerto for Two Flutes at Eastman Theater (Kodak Hall) in front of a full orchestra on March 7th. Nadine will also get to wear a full-length gown for the event.
As background, Nadine and her buddy Victor had decided to enter the Rochester Philharmonic Youth Orchestra Concerto Competition with a double flute concerto -- they didn't want to compete with each other. This had been decided well before Nadine was diagnosed with leukemia. The chose the gorgeous classical-era Double Concerto for Two Flutes by Cimerosa, and had begun practicing while Nadine had been staying at Ronald MacDonald House for a few days. His mom and I had gleefully watched from the "mezzanine" balcony at the house.
They had found Joe Werner, the RPO pianist and a wonderful accompanist and person, to accompany them. The very first rehearsal had been jeopardized by Nadine being delayed at clinic during a chemo treatment (sigh), but it had been scheduled later the same evening and sounded stellar.
Victor and Nadine also did numerous fun and busy practices at our house. They even did some shenanigans like playing single-flute pieces with one blowing into the mouthpiece while the other did the fingering, which was very humorous to watch.
TUESDAY DECEMBER 8th -- REHEARSAL FOR CONCERTO COMPETITION
That night Nadine and Victor had their FINAL REHEARSAL with accompanist Joe for the Concerto Competition.
Joe managed to book the bit Hochstein Performance Hall for the rehearsal, and the two of them were magnificent!! I asked to video and also sound-record it, which I was granted, and this was a perfect opportunity. The music was beautiful, and Nadine and Victor were amazingly coordinated together, and obviously were having fun, and Joe was having fun too. Joe the accompanist said that if they didn't win, there was something wrong. They played through it once, then did details, and then did the whole thing again and I did the recording; they were gracious when it took a while for me to get the recording device on.
After Joe left, the two of them did a few details and then sprawled out on the stage to work on their required essay. Happily, I had found out the essay wasn't part of the judging, but it was still due (by email) that night. Victor had done the draft; Nadine had made additions; the two of them looked comfy and I left them to it and went to the lounge, where I ran into Ming-Fong, Victor's mom, with whom I chatted and joked, including about what the two would wear. They wanted "casual"; we thought that Victor should wear a suit and Nadine should wear a dress. The next day, Sophia informed them both that she wanted them to wear suit and dress, and her word was law.
THURSDAY DECEMBER 10TH --CONCERTO COMPETITION DAY AND SNOW SNOW SNOW
It was super-snow, and Nadine was starting to feel yucky -- after all, it was Day 10 of the chemo cycle, so this wasn't unexpected. She warmed up a little and mostly took it easy.
We left the house early -- I had to wipe snow off the car, I wanted to find a nice practice room at Eastman for all of us. Joe was coming around 5; their slot was 6:15. Left later than desired, found a decent parking spot right across the street from Eastman, dashed in with Nadine, and raced upstairs -- and I found a practice room with a grand piano and no lock on the door. Joe the accompanist arrived early and I ushered him and Nadine to the room, then waited downstairs for Victor, whose car had gotten stuck in snowy-road traffic, but he made it a few minutes later and they practiced.
Susan Basu (the manager) and David Harmon (the conductor) were downstairs; there were the usual greetings. Eventually Nadine, Victor and Joe came downstairs, Nadine and Victor got suitably dressed, and they were ready. Nadine had on her wonderful sleek silky brown knee-length dress with the transparent and brown overlay that she'd gotten earlier.
The time arrived. I stationed myself outside the door and listened -- they sounded wonderful! David Harmon was listening from outside too, and said they sounded like a "well-oiled machine". He wasn't judging, and it was still nice to hear his comment.
Unknown to Nadine, Bonita Boyd, the renouned flutist and collegiate professor at Eastman, was one of the judges -- Nadine might have been too nervous to recognize her. Nadine had been slated to study with her over the summer at Aria Institute at Williams College before leukemia ended that -- Dr. Boyd still plans to give her one or two lessons to compensate.
After they left, Nadine said Victor played well and that she was off pitch or something, and we left. It was over. Finished. It felt like a victory, no matter what happened.
FRIDAY DECEMBER 11TH -- WINNING PHONE CALL!!!! THEY WON!!!!
In Friday morning -- it was Susan Basu, the orchestra manager. "CONGRATULATIONS", she said. They had won.
I handed the phone to Nadine, who was in the kitchen, without telling her. Nadine got to hear it. EXCITEMENT!!!
What an event!
As background, Nadine and her buddy Victor had decided to enter the Rochester Philharmonic Youth Orchestra Concerto Competition with a double flute concerto -- they didn't want to compete with each other. This had been decided well before Nadine was diagnosed with leukemia. The chose the gorgeous classical-era Double Concerto for Two Flutes by Cimerosa, and had begun practicing while Nadine had been staying at Ronald MacDonald House for a few days. His mom and I had gleefully watched from the "mezzanine" balcony at the house.
They had found Joe Werner, the RPO pianist and a wonderful accompanist and person, to accompany them. The very first rehearsal had been jeopardized by Nadine being delayed at clinic during a chemo treatment (sigh), but it had been scheduled later the same evening and sounded stellar.
Victor and Nadine also did numerous fun and busy practices at our house. They even did some shenanigans like playing single-flute pieces with one blowing into the mouthpiece while the other did the fingering, which was very humorous to watch.
TUESDAY DECEMBER 8th -- REHEARSAL FOR CONCERTO COMPETITION
That night Nadine and Victor had their FINAL REHEARSAL with accompanist Joe for the Concerto Competition.
Joe managed to book the bit Hochstein Performance Hall for the rehearsal, and the two of them were magnificent!! I asked to video and also sound-record it, which I was granted, and this was a perfect opportunity. The music was beautiful, and Nadine and Victor were amazingly coordinated together, and obviously were having fun, and Joe was having fun too. Joe the accompanist said that if they didn't win, there was something wrong. They played through it once, then did details, and then did the whole thing again and I did the recording; they were gracious when it took a while for me to get the recording device on.
After Joe left, the two of them did a few details and then sprawled out on the stage to work on their required essay. Happily, I had found out the essay wasn't part of the judging, but it was still due (by email) that night. Victor had done the draft; Nadine had made additions; the two of them looked comfy and I left them to it and went to the lounge, where I ran into Ming-Fong, Victor's mom, with whom I chatted and joked, including about what the two would wear. They wanted "casual"; we thought that Victor should wear a suit and Nadine should wear a dress. The next day, Sophia informed them both that she wanted them to wear suit and dress, and her word was law.
THURSDAY DECEMBER 10TH --CONCERTO COMPETITION DAY AND SNOW SNOW SNOW
It was super-snow, and Nadine was starting to feel yucky -- after all, it was Day 10 of the chemo cycle, so this wasn't unexpected. She warmed up a little and mostly took it easy.
We left the house early -- I had to wipe snow off the car, I wanted to find a nice practice room at Eastman for all of us. Joe was coming around 5; their slot was 6:15. Left later than desired, found a decent parking spot right across the street from Eastman, dashed in with Nadine, and raced upstairs -- and I found a practice room with a grand piano and no lock on the door. Joe the accompanist arrived early and I ushered him and Nadine to the room, then waited downstairs for Victor, whose car had gotten stuck in snowy-road traffic, but he made it a few minutes later and they practiced.
Susan Basu (the manager) and David Harmon (the conductor) were downstairs; there were the usual greetings. Eventually Nadine, Victor and Joe came downstairs, Nadine and Victor got suitably dressed, and they were ready. Nadine had on her wonderful sleek silky brown knee-length dress with the transparent and brown overlay that she'd gotten earlier.
The time arrived. I stationed myself outside the door and listened -- they sounded wonderful! David Harmon was listening from outside too, and said they sounded like a "well-oiled machine". He wasn't judging, and it was still nice to hear his comment.
Unknown to Nadine, Bonita Boyd, the renouned flutist and collegiate professor at Eastman, was one of the judges -- Nadine might have been too nervous to recognize her. Nadine had been slated to study with her over the summer at Aria Institute at Williams College before leukemia ended that -- Dr. Boyd still plans to give her one or two lessons to compensate.
After they left, Nadine said Victor played well and that she was off pitch or something, and we left. It was over. Finished. It felt like a victory, no matter what happened.
FRIDAY DECEMBER 11TH -- WINNING PHONE CALL!!!! THEY WON!!!!
In Friday morning -- it was Susan Basu, the orchestra manager. "CONGRATULATIONS", she said. They had won.
I handed the phone to Nadine, who was in the kitchen, without telling her. Nadine got to hear it. EXCITEMENT!!!
What an event!
Saturday, January 9, 2010
All State Orchestra Week-End For Nadine
DECEMBER 3rd -- ALLSTATE MUSIC WEEK-END -- A GO!
Off to All-State for Nadine! I felt better than the day before-- I can say antibiotics rule. All-State was at the Radisson Riverside Hotel in downtown Rochester, and "kids" came from all over the state. It was an honor for Nadine to have been chosen. She had placed into the Symphony Orchestra.
When we got the "forms" to fill out after she was accepted, of course there was a space for "medical" issues. I wrote one word -- "leukemia" -- and under medicines I wrote "assorted". I got a call from the head chaperone and thought Nadine might be disqualified, but instead the very nice man said they wanted her to be able to go and wanted to know how they could help! I said it would help if I could have a room at the hotel so she could rest and so I could take care of her if needed, and they got me one! They also were solicitous about just about everything.
As Nadine's "counts" were excellent that week-end, she had no medical restrictions other than common sense!
When we arrived in the bustling hotel, Nadine wanted to wait on line with everyone; however, the organizers had insisted she go to the front, and she was greeted very warmly. I met the head chaperones, whom I'd spoken with earlier. The judge who had recommended her after her audition was there; he very happy to see her (and me too). Apparently he'd been so impressed with her that a lot of people knew of her.
As for me, I got a wonderful week-end too -- I got to eat with the chaperones, to chat with music teachers and various music folks, to watch rehearsals, and enjoy the ambiance, which I did. The buffet breakfasts were delicious. It was a mini-vacation, and I was making the most of it.
Nadine had pictures taken at the "top of the escalator" near the chandelier with the other Cattaraugus County attendees (about 6 of them).
We got to see Ruth Fuller, the wonderful Hinsdale music teacher, band leader/conductor, and flutist, who has been so warm and supportive to Nadine from when she first met her about 5 years ago. (Okay Ruth, I don't care if you see this -- you know how much I think of you). We got to see other music teachers as well.
I enjoyed watching kids happily bustling back and forth up and down the escalator with the fabulous chandelier over it. :I loved watching the sparkly lights and lighted snowflakes and river and the moving lights of vehicles on Main Street from the glassed-in upper walkway between the hotel and conference center. The unreal glamour of a hotel in the midst of the rest of life felt comforting. There was a beautiful gingerbread house on exhibit, a reproduction of Eastman Theater in the 20's festooned with bright-colored candies. People scooted about the hotel in wonderful moods. Little jam sessions happened, especially around one of the pianos; kids singing; piano in varieties of styles.
I was installed in a room down the hall from Nadine.
The first night, I decided to go to bed early, enjoying the huge king bed with snow-white comforter, adjustable firmness, and zillions of pillows. If I had to get lots of rest, this was the place to do it.
First, I brought supplies to Nadine, as she gets hungry at night -- peanut butter, jelly, bread I'd procured from the desk clerk, more hand sanitizer, etc., and left it in a cooler outside her room door, along with a list of her meds.
The next day I enjoyed rehearsals, including hers. The symphony orchestra rehearsed in the Hyatt Hotel, an impressive walk including walkways first to the Conference Center, then to the Hyatt, then finding the room. About a hundred musicians with every possibly symphony instrument. Crowded room, small bald-ish conductor. Joan Towers, the composer who had created one of the pieces, "For The Uncommon Woman", was talking about her work, inviting comments and suggestions. The piece itself was pretty brassy and clanked a lot-- lots of percussion. The other piece, Respighi's "Pines of Rome", was massive and of course gorgeous. I sat near the big brass and enjoyed watching and photographing contours and reflections in the huge golden "bells" of the trombones and tuba.
Nadine had two excellent room-mates, and loved wandering around with her buddies. She also managed to find time to sneak off and practice the Cimerosa concerto with Victor. Friday, I also had to do a shopping expedition for supplies for Nadine.
Friday night Nadine joined a rock and roll dance,complete with professional DJ, loud music, disco lights flashing in the darkened room, and enormous masses of kids dancing, shouting and waving arms in the large hall -- a perfect event. I had gone in and enjoyed the scene, even danced a little with one of the other chaperones. I noticed Nadine was gyrating amongst the group, and succeeded in staying out of her way and hopefully even off her "radar screen". I was impressed that the organizers honored this side of the kids' lives.
Of meaning to me, I got to chat with a music teacher who told me she'd gotten into music teaching after her kids were grown, and she encouraged me to go ahead and study music myself if that was what I wanted. I needed that. I also enjoyed chatting with other teachers including two from Hinsdale.
On Saturday I visited various rehearsals, especially liking the String Orchestra, which did eclectic stuff including a piece by Perkins that included "slap" bass, and a Mozart divertimento or two. The conductor was amazing -- I liked him a lot better than Nadine's. It turns out he teaches at the University of Michigan, and after a wonderful conversation with him, I was quite impressed about Michigan for Nadine. He said to be sure to visit him with Nadine if we go to visit -- I'm sure we will. Later on, the two orchestras did a "rehearsal exchange" where each got to see a piece of the others' repertoire.
I explored the massive conference room, looking at booths with possible colleges for Nadine although I was dismayed that most were colleges to train teachers (although that's valid too); talked with folks from Ithaca College and Crane School, and hungrily sampled pizza from a vendor of foods for fund-raisers.
That evening Barry arrived, and we both got to her evening rehearsal. And after that, Nadine went upstairs; I stayed down a while, and watched an amazing jazz session by kids on saxophone, trumpet, piano, and probably others -- one of the best I've heard. I also passed a room with kids swing-dancing. I checked out the rock and roll dance again -- it ended with an announcement of curfew time. I left and saw the jazz jam still going on -- the swing dancers had found them and were out dancing to them. Eventually everyone scurried up, including me. Nadine was still independent and happy.
On Sunday was the Big Performance of the Symphony Orchestra in Eastman Theater. Nadine of course went with her group; Barry and I drove over, and I found us excellent seats in the second row center mezzanine. It was a super-AllState, crowded and fun. Nadine came out with her orchestra and they sounded spectacular, all of them!!! What a treat to see her up there in the big theater with all those other excellent musicians.
Afterwards, Nadine came down and wasn't sure if she'd have a bus back to the hotel; I stayed with her until the bus left, savoring the sight of those wonderful kids bustling around again. After that, I couldn't find Barry-- I waited and waited. One of the chaperones introduced me to the director of All-State, who was down there -- I think she'd known about Nadine too, and everyone seemed pleased she (and I) had had such a nice time. Barry was nowhere in sight -- and he had the car. Finally I picked up my stuff and trudged back the quarter to half mile or so to the hotel in the cold -- when almost there, I saw his car, and raced across the street and got in.
We all connected with each other upstairs, Barry took Nadine to the Rochester Philharmonic Youth Orchestra rehearsal (she was still full of energy), and I finished checking out of the hotel, and that was it.
A week-end well done, a Nadine who had been in excellent shape, and some beautiful concerts.
Off to All-State for Nadine! I felt better than the day before-- I can say antibiotics rule. All-State was at the Radisson Riverside Hotel in downtown Rochester, and "kids" came from all over the state. It was an honor for Nadine to have been chosen. She had placed into the Symphony Orchestra.
When we got the "forms" to fill out after she was accepted, of course there was a space for "medical" issues. I wrote one word -- "leukemia" -- and under medicines I wrote "assorted". I got a call from the head chaperone and thought Nadine might be disqualified, but instead the very nice man said they wanted her to be able to go and wanted to know how they could help! I said it would help if I could have a room at the hotel so she could rest and so I could take care of her if needed, and they got me one! They also were solicitous about just about everything.
As Nadine's "counts" were excellent that week-end, she had no medical restrictions other than common sense!
When we arrived in the bustling hotel, Nadine wanted to wait on line with everyone; however, the organizers had insisted she go to the front, and she was greeted very warmly. I met the head chaperones, whom I'd spoken with earlier. The judge who had recommended her after her audition was there; he very happy to see her (and me too). Apparently he'd been so impressed with her that a lot of people knew of her.
As for me, I got a wonderful week-end too -- I got to eat with the chaperones, to chat with music teachers and various music folks, to watch rehearsals, and enjoy the ambiance, which I did. The buffet breakfasts were delicious. It was a mini-vacation, and I was making the most of it.
Nadine had pictures taken at the "top of the escalator" near the chandelier with the other Cattaraugus County attendees (about 6 of them).
We got to see Ruth Fuller, the wonderful Hinsdale music teacher, band leader/conductor, and flutist, who has been so warm and supportive to Nadine from when she first met her about 5 years ago. (Okay Ruth, I don't care if you see this -- you know how much I think of you). We got to see other music teachers as well.
I enjoyed watching kids happily bustling back and forth up and down the escalator with the fabulous chandelier over it. :I loved watching the sparkly lights and lighted snowflakes and river and the moving lights of vehicles on Main Street from the glassed-in upper walkway between the hotel and conference center. The unreal glamour of a hotel in the midst of the rest of life felt comforting. There was a beautiful gingerbread house on exhibit, a reproduction of Eastman Theater in the 20's festooned with bright-colored candies. People scooted about the hotel in wonderful moods. Little jam sessions happened, especially around one of the pianos; kids singing; piano in varieties of styles.
I was installed in a room down the hall from Nadine.
The first night, I decided to go to bed early, enjoying the huge king bed with snow-white comforter, adjustable firmness, and zillions of pillows. If I had to get lots of rest, this was the place to do it.
First, I brought supplies to Nadine, as she gets hungry at night -- peanut butter, jelly, bread I'd procured from the desk clerk, more hand sanitizer, etc., and left it in a cooler outside her room door, along with a list of her meds.
The next day I enjoyed rehearsals, including hers. The symphony orchestra rehearsed in the Hyatt Hotel, an impressive walk including walkways first to the Conference Center, then to the Hyatt, then finding the room. About a hundred musicians with every possibly symphony instrument. Crowded room, small bald-ish conductor. Joan Towers, the composer who had created one of the pieces, "For The Uncommon Woman", was talking about her work, inviting comments and suggestions. The piece itself was pretty brassy and clanked a lot-- lots of percussion. The other piece, Respighi's "Pines of Rome", was massive and of course gorgeous. I sat near the big brass and enjoyed watching and photographing contours and reflections in the huge golden "bells" of the trombones and tuba.
Nadine had two excellent room-mates, and loved wandering around with her buddies. She also managed to find time to sneak off and practice the Cimerosa concerto with Victor. Friday, I also had to do a shopping expedition for supplies for Nadine.
Friday night Nadine joined a rock and roll dance,complete with professional DJ, loud music, disco lights flashing in the darkened room, and enormous masses of kids dancing, shouting and waving arms in the large hall -- a perfect event. I had gone in and enjoyed the scene, even danced a little with one of the other chaperones. I noticed Nadine was gyrating amongst the group, and succeeded in staying out of her way and hopefully even off her "radar screen". I was impressed that the organizers honored this side of the kids' lives.
Of meaning to me, I got to chat with a music teacher who told me she'd gotten into music teaching after her kids were grown, and she encouraged me to go ahead and study music myself if that was what I wanted. I needed that. I also enjoyed chatting with other teachers including two from Hinsdale.
On Saturday I visited various rehearsals, especially liking the String Orchestra, which did eclectic stuff including a piece by Perkins that included "slap" bass, and a Mozart divertimento or two. The conductor was amazing -- I liked him a lot better than Nadine's. It turns out he teaches at the University of Michigan, and after a wonderful conversation with him, I was quite impressed about Michigan for Nadine. He said to be sure to visit him with Nadine if we go to visit -- I'm sure we will. Later on, the two orchestras did a "rehearsal exchange" where each got to see a piece of the others' repertoire.
I explored the massive conference room, looking at booths with possible colleges for Nadine although I was dismayed that most were colleges to train teachers (although that's valid too); talked with folks from Ithaca College and Crane School, and hungrily sampled pizza from a vendor of foods for fund-raisers.
That evening Barry arrived, and we both got to her evening rehearsal. And after that, Nadine went upstairs; I stayed down a while, and watched an amazing jazz session by kids on saxophone, trumpet, piano, and probably others -- one of the best I've heard. I also passed a room with kids swing-dancing. I checked out the rock and roll dance again -- it ended with an announcement of curfew time. I left and saw the jazz jam still going on -- the swing dancers had found them and were out dancing to them. Eventually everyone scurried up, including me. Nadine was still independent and happy.
On Sunday was the Big Performance of the Symphony Orchestra in Eastman Theater. Nadine of course went with her group; Barry and I drove over, and I found us excellent seats in the second row center mezzanine. It was a super-AllState, crowded and fun. Nadine came out with her orchestra and they sounded spectacular, all of them!!! What a treat to see her up there in the big theater with all those other excellent musicians.
Afterwards, Nadine came down and wasn't sure if she'd have a bus back to the hotel; I stayed with her until the bus left, savoring the sight of those wonderful kids bustling around again. After that, I couldn't find Barry-- I waited and waited. One of the chaperones introduced me to the director of All-State, who was down there -- I think she'd known about Nadine too, and everyone seemed pleased she (and I) had had such a nice time. Barry was nowhere in sight -- and he had the car. Finally I picked up my stuff and trudged back the quarter to half mile or so to the hotel in the cold -- when almost there, I saw his car, and raced across the street and got in.
We all connected with each other upstairs, Barry took Nadine to the Rochester Philharmonic Youth Orchestra rehearsal (she was still full of energy), and I finished checking out of the hotel, and that was it.
A week-end well done, a Nadine who had been in excellent shape, and some beautiful concerts.
Subscribe to:
Posts (Atom)