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..
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