Nadine's neutrophil count has been stubborn -- on Tuesday they had crept up to 500, still not enough to re-start a chemo cycle, and today they'd gone down to 400. The red blood cells, etc., were up, as were the other counts. They'll be tested again Friday morning, but already it's been 2 weeks late starting the chemo. Makes me nervous. Am I worried? Yes. Although, amazingly, she's been feeling well. Today we were in the clinic a long time -- bloodwork, physical exam, asparinase injection, wait period afterwards.
Yesterday,in spite of all of this, she had an excellent flute lesson, regaining her magnificent tone. Sophia Gibbs Kim, her flute teacher, came to the house, and they played some duets together with wonderfully sweet harmony, and Nadine also went over solo stuff -- just gorgeous. I'm so glad this happened.
She's been feeling relatively well too.
She went to a photo-shoot for TLAC (Teens Living with Cancer) that night, and it was mega-fun -- a fun photographer came and did outdoor pictures of the 4 or 5 girls, and after that they stayed and watched a movie together. All of the girls were "dressed" in fun ways, and there was much merriment. I enjoyed some talks with the parents.
Nadine and I went back to the Southern Tier over the week-end, the very first time we'd gone since she was diagnosed. Our own house, Nadine's own cat, the trees. Nadine spent much time doing stuff with Barry and cuddling the cat, reading and watching movies. I was hoping to get the place "decluttered". Nadine wanted to clean up her room and went through piles of stuff. I did about 15 loads of laundry.
I admittedly got extra sentimental about her "little girl things" with all that's been going on. Okay okay, I would have been sentimental in any case.
I wasn't going to ask for help sorting the basement, but my friend Kim Driscoll, who has a wide smile and a passion for art, contacted me right before I arrived and asked if there was anything she could do to help out. I told her she might regret having made that offer -- she came, and it was actually fun, and easier, doing it with a friend. More than a car-load of stuff got designated for Freecyle and similar stuff.
I had to change Nadine's wound dressing down there, only I'd forgotten to bring the anti=dressing stuff including the Aquacel anti-microbial silver-laden absorbent dressing, the Allyvan pads, the sterile saline syringes, etc. To my relief, there was suitable stuff at the Olean General Hospital pharmacy, only about 8 miles away, although I had to traipse to Rite-Aid to look for sterile gauze sponges. I went back to the house, got Nadine ready, removed the Allyvan pad, and the old dressing wouldn't come out -- the first time that happened. The nurse suggested rolling it out with a gauze sponge, but it started to bleed and I gave up, put back a pad, and let Jessie the nurse handle it the next day. At least it got aired out.
We were going to go back to Rochester and a birthday party, but Nadine didn't feel up to the party, so we stayed in the Southern Tier through Tuesday morning, before happily driving back up to Rochester.
Tonight, Nadine went off to Sylvia's house for a sleep-over. Although this sounds dumb, an ingrown toenail was cause for concern about infection -- it actually is a little infected, so I had to make sure the foot got soaked. Leukemia seems to make lots of ordinarily little things concerns for complications.
I'm glad she's getting a fun visit. She deserves it. As for me -- time for bed.
Wednesday, August 26, 2009
Friday, August 21, 2009
A Friend and a Hug
A quick little note -- a few weeks ago my friend Diana showed up at our door to give me a hug. She was on her way somewhere, and just stopped in, saying how nice it is that we're now neighbors. I love the spontaneity -- we're so appointment-ed and planner-ed and efficiency-ed that the joy of just meeting and sharing has become compartmentalized. It was a 5 minute stop that brightened my day.
Today I was planning to stop in at Diana's house for a quick hug too. Just as I was leaving, she appeared at my door again --- for another hug.
A day or three after Nadine was diagnosed in May, Diana came to me in the hospital and told me that I wouldn't have to go through this again. She hugged me and I cried on her shoulder. And I knew she spoke the truth -- I haven't had to go through this alone. She also admonished me to be careful to be honest and tell people when I need space by myself.
Several friends from out of town have called lately with greetings, and also lamenting they can't do more than thinking kindly of us. Thinking kindly of us -- now that's an enormous gift. People are doing what they can, what they are moved to, and all the gifts we've gotten have added up to one gorgeous feeling of being-loved-in-the-universe that permeates our experience.
Meals are still appearing from spontaneous places, hugs, calls, music. Lauren Spiker from TLC called and invited us to visit the beautiful garden at her house.
Nadine and I are in this for the long haul. I was concerned that we'd be deserted after the first "push", but that hasn't been true. The long-term companionship has been such a gift.
Updated 7 seconds ago · Comment · Like
Today I was planning to stop in at Diana's house for a quick hug too. Just as I was leaving, she appeared at my door again --- for another hug.
A day or three after Nadine was diagnosed in May, Diana came to me in the hospital and told me that I wouldn't have to go through this again. She hugged me and I cried on her shoulder. And I knew she spoke the truth -- I haven't had to go through this alone. She also admonished me to be careful to be honest and tell people when I need space by myself.
Several friends from out of town have called lately with greetings, and also lamenting they can't do more than thinking kindly of us. Thinking kindly of us -- now that's an enormous gift. People are doing what they can, what they are moved to, and all the gifts we've gotten have added up to one gorgeous feeling of being-loved-in-the-universe that permeates our experience.
Meals are still appearing from spontaneous places, hugs, calls, music. Lauren Spiker from TLC called and invited us to visit the beautiful garden at her house.
Nadine and I are in this for the long haul. I was concerned that we'd be deserted after the first "push", but that hasn't been true. The long-term companionship has been such a gift.
Updated 7 seconds ago · Comment · Like
Visits , Low Blood Counts and Chemo Delays, and More Music
On Tuesday, I had a big shopping “mission” from Nadine. Pickles, healthy lollipops or hard candy, baked tofu, cantaloupe, cheese, carrots, and (surprise) a cucumber, among other things.
Nurse Jessie came over at about 11:30 to draw Nadine’s blood. Although Nadine was still pale, I figured they were fine by now as Nadine had energy. Jessie left Nadine’s port “accessed” so no one would have to poke her on Wednesday at clinic. It’s so nice that with the port she didn’t have to have the veins in her arms assaulted like before.
Nadine wanted a nice quiet day with me. I was originally going to go swimming with Betty, but instead suggested that we meet for ice cream at Bruster’s, which is near Wegmans where I could get the food Nadine requested. That was a luscious delight. Black raspberry ice cream is both of our favorite -- a nice thing for friends to share. The shop took a while -- an unfamiliar store.
I left the store in the middle to watch a huge, glorious thunderstorm, with drenchint rain that rivaled my beloved Midwest storms. The line of rain was visible in the parking lot, the thunder cracks were satisfyingly loud, and the wind was blustery. The sun suddenly came out afterwards, promising a rainbow that I never found.
_____________
Later in the afternoon we got an unpleasant surprise -- Margaret called to say Nadine’s “counts” were still not up -- platelets were fine, but the hematocrit was still at 23,000 (appropriate for a transfusion) and her ANC (absolute neutrophil count) was only 100, actually DOWN from the week before. This was nasty, and it meant Nadine’s chemo would have to be put off ANOTHER week unless it went up fast the next day. Her face had also been pale, and she had been lethargic and uncomfortable at times. Other times, she was still lethargic but cheerful.
We still spent a pleasant evening -- we relaxed in the upper room with the air conditioner, and played my “birthday” request for a game of settlers togethe. Nadine had music hooked up on the computer, and we could listen. just the two of us. It was fun.
Denise, a woman who took the fiddlers’ camp (that was mostly kids) didn’t even know me, but she had offered to bring me supper, and that night she brought a bunch of it -- enough for a Mexican meal plus a chicken dinner -- she and her husband visited some too. Nadine stayed upstairs resting. Later I visited with Nadine, and read to her again -- she really likes that.
Afterwards, Alice’s daughter Daphne and her brother plus Diane’s kids were playing in the performance room. Nadine first joined Daphne in a game of scrabble (they both play well) and then all four kids (including Nadine) sprawled out on the floor and played a multi-decked card game and other stuff I didn’t recognize. I could see Nadine was having a wonderful time at this, and I enjoyed watching her, plus chatting with Alice.
On Wednesday (yesterday) Nadine had her clinic appointment. We got there on time this time -- still there was a wait, but not like last time. Her blood got tested, but predictably her counts weren’t high enough for any chemo except for the asparaginase injection, which she received. At least her hematocrit was up to 27,000, so no transfusion happened. Yay. Margaret had her usual appointment with Nadine, and I consulted with the educational specialist.
Nadine saw Dr. Bruckner (her “official” doctor) for the first time in over a month -- it’s usually every three weeks, but Dr. Bruckner was away last time, and Nadine saw Dr. Mullen instead. Dr. Bruckner did a long, thorough history and exam, and went over the variants and quirks that had happened so far -- the prolonged low counts, the anti-nausea saga, etc. She said that the prolonged low counts could mean the chemo is “really” working on the leukemia cells as well. However, if the counts are still like that next Wednesday Nadine may need more testing. I was told that probably the counts would go back up, however sluggish they were, as the monocytes and platelets were already high and the hematocrit was rising .
I admit I’m getting a bit edgy about it.
This week-end Nadine and I are planning to go back to Hinsdale for the first time since she was diagnosed. I’m excited and so is she. I’ll have a lot of work to do cleaning out the place.
Nadine’s flute teacher Sophia Gibbs Kim came over last night, and she and Nadine had a lively and fun conversation together -- it was nice to see them as “people” and not only as flute teacher-student. Sophia brought Nadine a huge poster of James Galway with a note from him from Nadine, from the National Flute Association conference. It was a fun visit -- I enjoyed getting to know Sophia as a “person” too.
After Sophia left, there was a late surprise. Nadine sat down at the piano and practiced and practiced and practiced the Beethoven sonatina -- and she “got” the entire first movement, including memorizing almost all of it; then she started the lovely second movement and got some of that too. All with a lilting and appropriate style. She worked into the night with me next to her watching and admiring and supporting.
Very early this morning, Nadine came to my bed -- she was itchy, really itchy -- finally I suggested a shower, which she took, and she seemed to feel better after that, and stayed in bed very, very late after that. She deserved it.
After that, she went back to bed.
Nurse Jessie came over at about 11:30 to draw Nadine’s blood. Although Nadine was still pale, I figured they were fine by now as Nadine had energy. Jessie left Nadine’s port “accessed” so no one would have to poke her on Wednesday at clinic. It’s so nice that with the port she didn’t have to have the veins in her arms assaulted like before.
Nadine wanted a nice quiet day with me. I was originally going to go swimming with Betty, but instead suggested that we meet for ice cream at Bruster’s, which is near Wegmans where I could get the food Nadine requested. That was a luscious delight. Black raspberry ice cream is both of our favorite -- a nice thing for friends to share. The shop took a while -- an unfamiliar store.
I left the store in the middle to watch a huge, glorious thunderstorm, with drenchint rain that rivaled my beloved Midwest storms. The line of rain was visible in the parking lot, the thunder cracks were satisfyingly loud, and the wind was blustery. The sun suddenly came out afterwards, promising a rainbow that I never found.
_____________
Later in the afternoon we got an unpleasant surprise -- Margaret called to say Nadine’s “counts” were still not up -- platelets were fine, but the hematocrit was still at 23,000 (appropriate for a transfusion) and her ANC (absolute neutrophil count) was only 100, actually DOWN from the week before. This was nasty, and it meant Nadine’s chemo would have to be put off ANOTHER week unless it went up fast the next day. Her face had also been pale, and she had been lethargic and uncomfortable at times. Other times, she was still lethargic but cheerful.
We still spent a pleasant evening -- we relaxed in the upper room with the air conditioner, and played my “birthday” request for a game of settlers togethe. Nadine had music hooked up on the computer, and we could listen. just the two of us. It was fun.
Denise, a woman who took the fiddlers’ camp (that was mostly kids) didn’t even know me, but she had offered to bring me supper, and that night she brought a bunch of it -- enough for a Mexican meal plus a chicken dinner -- she and her husband visited some too. Nadine stayed upstairs resting. Later I visited with Nadine, and read to her again -- she really likes that.
Afterwards, Alice’s daughter Daphne and her brother plus Diane’s kids were playing in the performance room. Nadine first joined Daphne in a game of scrabble (they both play well) and then all four kids (including Nadine) sprawled out on the floor and played a multi-decked card game and other stuff I didn’t recognize. I could see Nadine was having a wonderful time at this, and I enjoyed watching her, plus chatting with Alice.
On Wednesday (yesterday) Nadine had her clinic appointment. We got there on time this time -- still there was a wait, but not like last time. Her blood got tested, but predictably her counts weren’t high enough for any chemo except for the asparaginase injection, which she received. At least her hematocrit was up to 27,000, so no transfusion happened. Yay. Margaret had her usual appointment with Nadine, and I consulted with the educational specialist.
Nadine saw Dr. Bruckner (her “official” doctor) for the first time in over a month -- it’s usually every three weeks, but Dr. Bruckner was away last time, and Nadine saw Dr. Mullen instead. Dr. Bruckner did a long, thorough history and exam, and went over the variants and quirks that had happened so far -- the prolonged low counts, the anti-nausea saga, etc. She said that the prolonged low counts could mean the chemo is “really” working on the leukemia cells as well. However, if the counts are still like that next Wednesday Nadine may need more testing. I was told that probably the counts would go back up, however sluggish they were, as the monocytes and platelets were already high and the hematocrit was rising .
I admit I’m getting a bit edgy about it.
This week-end Nadine and I are planning to go back to Hinsdale for the first time since she was diagnosed. I’m excited and so is she. I’ll have a lot of work to do cleaning out the place.
Nadine’s flute teacher Sophia Gibbs Kim came over last night, and she and Nadine had a lively and fun conversation together -- it was nice to see them as “people” and not only as flute teacher-student. Sophia brought Nadine a huge poster of James Galway with a note from him from Nadine, from the National Flute Association conference. It was a fun visit -- I enjoyed getting to know Sophia as a “person” too.
After Sophia left, there was a late surprise. Nadine sat down at the piano and practiced and practiced and practiced the Beethoven sonatina -- and she “got” the entire first movement, including memorizing almost all of it; then she started the lovely second movement and got some of that too. All with a lilting and appropriate style. She worked into the night with me next to her watching and admiring and supporting.
Very early this morning, Nadine came to my bed -- she was itchy, really itchy -- finally I suggested a shower, which she took, and she seemed to feel better after that, and stayed in bed very, very late after that. She deserved it.
After that, she went back to bed.
Continued Catch-Up
Nadine said that on Sunday she’d make up the week's activity and do “nothing” and she did well at it. Barry came up late Saturday night, and it was nice to have him there with me and Nadine for the night. He stayed through most of Sunday too, and we had a game together and it was an enjoyable visit. A quiet day at last.
I changed Nadine’s wound dressing on Sunday. She doesn’t seem to like me to do it, and I in turn feel clumsy. Not dangerous, just clumsy. This was no exception. Barry wanted to see how it was done, and he got to. The wound was definitely getting smaller, which is excellent. Nadine fussed while I did the deed, but thanked me profusely afterwards. Oh well.
I got a treat -- Hope Greitzer, with whom I'd planned to start a band, was in town. I'd called her a few days earlier (a big step), planning to meet her in Corning, but she was right here (accompanying kids at the fiddlers' faire). We practiced together in my bedroom (which has a piano too!) with Nadine and Barry keeping me company. Hope has a warm, smooth and lively fiddle style, and a warm loving and lively nature. We knew quite a few tunes in common and also taught each other a few. Her husband Jim joined us, and shared some wonderful finger-picking guitar, which Nadine loved -- she has been teaching herself guitar. I’m so pleased.
The dressing for the new port insertion still is stuck on one of the sutures -- I plan to call the department that put it in and have them look at it next week, although it is probably just fine.
On Monday Kristin, the physical therapist, arrived -- Nadine felt sheepish that she hadn’t done more of the set exercises, but at least she had gotten dance exercise. Arm-strengthening was nice for Nadine, though. She can use it.
It was nice and hot out , and while Nadine stayed at home, I called Wendy Mancarella and took her up on her offer of swimming in her pool. I have received so many gifts tailored to what I love; this was one of them. Wendy is gracious and lovely, and her twins (about to be 14 years old) are also lovely -- I’ve done theater stuff with them. Their 4-year-old daughter Leah is a lively little love. I invited her to splash me in the pool to get me wet. I remember how much it fun it used to be to splash others -- why not give her the pleasure? It was an ideal and idyllic few moments.
Nadine’s composition teacher Margaret arrived for an afternoon visit-- we visited alone first, then we all visited. Margaret is so giving and caring and lively. She is also a marathon runner. I put on Nadine’s audition CD for the National Flute Association high school flute choir -- I hadn’t remembered how gorgeous it was. Margaret loved listening to it too. Nadine played the starkly lyrical Chante perfectly -- it is gorgeous, with meaningful repetition built into it. It took complete musicality or it could sound trite. The Bach partita was also lovely, and I realized that her stylistic choice of detached notes was completely right, even though I’d disagreed with it at the time. The very modern alto flute selection was also gorgeous -- some like a wild bumble bee and other parts lyrical. I love the richness-plus-range of the alto flute.
Margaret announced she’s planning a concert in which Nadine would be honored, and Nadine’s pieces would be performed. My compositions would also be in it. I persuaded Margaret to include hers as well. That should get us going.
She also worked with Nadine on preparing for her piano proficiency test for her Eastman “preparatory diploma”. Nadine amazingly picked up the scales quickly, plus arpeggios and has a lovely touch. She could have been a pianist if she hadn’t already chosen the flute. I suggested she use the Bach minuet and the Beethoven Sonatina in G for pieces for that, and Margaret said she’d bring them next time. It was nice to see them together. Nadine had indicated she wanted to do piano mostly without me and I had honored it. I loved watching, though.
Later, Nadine and I had another nice quiet night complete with reading. At bedtime, however, Nadine seemed anxious and wanted me to lie down with her. This often happens at night.
______________________________________
I changed Nadine’s wound dressing on Sunday. She doesn’t seem to like me to do it, and I in turn feel clumsy. Not dangerous, just clumsy. This was no exception. Barry wanted to see how it was done, and he got to. The wound was definitely getting smaller, which is excellent. Nadine fussed while I did the deed, but thanked me profusely afterwards. Oh well.
I got a treat -- Hope Greitzer, with whom I'd planned to start a band, was in town. I'd called her a few days earlier (a big step), planning to meet her in Corning, but she was right here (accompanying kids at the fiddlers' faire). We practiced together in my bedroom (which has a piano too!) with Nadine and Barry keeping me company. Hope has a warm, smooth and lively fiddle style, and a warm loving and lively nature. We knew quite a few tunes in common and also taught each other a few. Her husband Jim joined us, and shared some wonderful finger-picking guitar, which Nadine loved -- she has been teaching herself guitar. I’m so pleased.
The dressing for the new port insertion still is stuck on one of the sutures -- I plan to call the department that put it in and have them look at it next week, although it is probably just fine.
On Monday Kristin, the physical therapist, arrived -- Nadine felt sheepish that she hadn’t done more of the set exercises, but at least she had gotten dance exercise. Arm-strengthening was nice for Nadine, though. She can use it.
It was nice and hot out , and while Nadine stayed at home, I called Wendy Mancarella and took her up on her offer of swimming in her pool. I have received so many gifts tailored to what I love; this was one of them. Wendy is gracious and lovely, and her twins (about to be 14 years old) are also lovely -- I’ve done theater stuff with them. Their 4-year-old daughter Leah is a lively little love. I invited her to splash me in the pool to get me wet. I remember how much it fun it used to be to splash others -- why not give her the pleasure? It was an ideal and idyllic few moments.
Nadine’s composition teacher Margaret arrived for an afternoon visit-- we visited alone first, then we all visited. Margaret is so giving and caring and lively. She is also a marathon runner. I put on Nadine’s audition CD for the National Flute Association high school flute choir -- I hadn’t remembered how gorgeous it was. Margaret loved listening to it too. Nadine played the starkly lyrical Chante perfectly -- it is gorgeous, with meaningful repetition built into it. It took complete musicality or it could sound trite. The Bach partita was also lovely, and I realized that her stylistic choice of detached notes was completely right, even though I’d disagreed with it at the time. The very modern alto flute selection was also gorgeous -- some like a wild bumble bee and other parts lyrical. I love the richness-plus-range of the alto flute.
Margaret announced she’s planning a concert in which Nadine would be honored, and Nadine’s pieces would be performed. My compositions would also be in it. I persuaded Margaret to include hers as well. That should get us going.
She also worked with Nadine on preparing for her piano proficiency test for her Eastman “preparatory diploma”. Nadine amazingly picked up the scales quickly, plus arpeggios and has a lovely touch. She could have been a pianist if she hadn’t already chosen the flute. I suggested she use the Bach minuet and the Beethoven Sonatina in G for pieces for that, and Margaret said she’d bring them next time. It was nice to see them together. Nadine had indicated she wanted to do piano mostly without me and I had honored it. I loved watching, though.
Later, Nadine and I had another nice quiet night complete with reading. At bedtime, however, Nadine seemed anxious and wanted me to lie down with her. This often happens at night.
______________________________________
Contra Dance, Jam Session, Sleep-Over, Party, Oh My!
Another long catch-up. Last week there was a flurry of Nadine activity, even if it was interspersed with periods on the couch. Ups and downs and activities.
The fiddle camp continued through the week. Nadine could hear it right from her bed. I was happy to be invited to accompany the kids on their large-group performance, and it was a treat to get to rehearse and play with such enthusiastic young people. The rehearsals were right where we were staying -- the concerts were at the school plus a nursing home and the Genesee Village and Museum Fiddlers' Faire -- all fun.
On Thursday, although she felt wretched during the early part of the day and her counts were down, Nadine still went with me to have ice cream at Brewster's with Claire and Betty, then I went home and Nadine went to Claire's house for for an (allegedly) quiet dinner. It was one of the last times for her to get together with Claire before Claire left for College last Sunday.
Nadine wanted to go to the contra dance with Claire and Sylvia, assuring me she'd take it easy; Nor'Easter was performing -- they're a refreshingly young (20s?) band from Boston. I'd thoroughly enjoyed seeing Julie Vallimont, their friendly and vivacious keyboardist, whom we'd first met at Ooh La La festival in Ways Mills, Quebec. Nadine had played with Cedar, their fiddler, at Flurry and NEFFA.
I was mixed about Nadine going, but she wanted to see that band, and also Claire and Sylvia were leaving soon for college. I had a choice. I could forbid her to go even though the medical people hadn’t objected; I could have sat stony-faced at the dance and glared at her; or I could just “let it be” and enjoy myself too. I chose to enjoy. It was a treat for me to see my friend (Sylvia's mom) Sue Klassen there, and other friends. The band really was amazing, including sets consisting of hot reels rolling in as great surprises after cool jigs.
Claire, Sylvia and Nadine were all out on the dance floor -- a threesome of close friends. Nadine made it through about 3 dances in her graceful way. She actually sat out in the middle of the third dance, which impressed me -- she really does pay attention to her body. As for me, I danced, danced, danced. We were planning on leaving after the break, but somehow we stayed on and made it through the end of the dance; Nadine really did take it easy; she did dance the last waltz. I got a video of her dancing one of the contra dances.
After the dance, however, both Nadine and I were concerned we'd stayed too late. Then, I couldn't find my car keys; after I found them, my car battery was dead (okay okay, I'd left the keys in the ignition), and the car had to "jumped". It was about midnight or later when we got home.
Nadine had a serious episode of panic terrified that she'd stayed too late and might get sick. I felt bad about having allowed it, and we had a subdued journey to bed. I guess it was inevitable that something like that could happen -- it felt pretty awful..
Friday morning, mercifully, she felt no bad effects, and had pleasant memories of the night before. Truthfully, so did I..
I’d invited the whole band Nor’Easter to visit us that morning -- they came around 11AM . Bouncy, wonderful folks. We gathered in the kitchen and started playing.(hurray for the piano in the kitchen). Nadine came down and brought her flute, and we played together -- Andrew and Noah joined us. Later on Nadine played one of her groove-style percussive originals and Max, the amazing mandolin guy, did the best groove-back-up I’ve ever heard with that piece. The two were AMAZING together. There were mixtures of music and lively conversation. Meanwhile the “kids” at the camp were outside on their lunch break, adding to the party atmosphere.
_______________________________
Friday night Nadine had her first night away from me since this she was diagnosed -- a sleep-over with Sylvia, with Claire visiting too before leaving to get ready for her going-away party. It went without mishap, although I called frequently to check up on her. My trust in Sue kept me somewhat “even”. The next day, Sylvia and Nadine worked on presents for Claire, and went shopping again -- Sue made sure they limited the time spent in Goodwill.
I took a long sunny drove to Genesee Country Museum alone to accompany the kids atr the Fiddlers' Faire, A long sunny drive, a fun place, and lots of fiddling. The concert was fun and reminded me of what I love. fterwards I played “tourist”, first touring the museum. On the way home.I stopped at a small festival in Scottsville, happy to be able to do some solitary wandering in the parched heat before returning.
That afternoon, I joined Nadine at Claire’s going-away party (Claire was leaving for college the very next day) and it was one amazing celebration. People were streaming around the lawn, by the lake, in the house, friendly and happy; much yummy food. The usual gaggle of teens was present, with someone on the swing, people in a circle, a group playing volley-ball. Betty presented the gorgeous quilt she’d made for Claire along with many others; I’d contributed a few stitches. Margaret, who was Claire’s theory teacher as well as being Nadine’s composition teacher, was there and got to meet our homeschooling friends. The party went on into dinner and more socializing. There were pictures of Claire at all ages. I have warm feelings for many of the people there -- there were a few I had wanted to get to know better, and this was able to happen..
Nadine was having a fine time bouncing responsibly in her flowing silk scarf. She even went down to the lake with the other teens, wading a little -- she couldn’t go in even close to all the way. Finally people left, hugging Claire one by one. I got my hug. Nadine and Sylvia were the last teens to leave, with special warm hugging, and finally we left.
The fiddle camp continued through the week. Nadine could hear it right from her bed. I was happy to be invited to accompany the kids on their large-group performance, and it was a treat to get to rehearse and play with such enthusiastic young people. The rehearsals were right where we were staying -- the concerts were at the school plus a nursing home and the Genesee Village and Museum Fiddlers' Faire -- all fun.
On Thursday, although she felt wretched during the early part of the day and her counts were down, Nadine still went with me to have ice cream at Brewster's with Claire and Betty, then I went home and Nadine went to Claire's house for for an (allegedly) quiet dinner. It was one of the last times for her to get together with Claire before Claire left for College last Sunday.
Nadine wanted to go to the contra dance with Claire and Sylvia, assuring me she'd take it easy; Nor'Easter was performing -- they're a refreshingly young (20s?) band from Boston. I'd thoroughly enjoyed seeing Julie Vallimont, their friendly and vivacious keyboardist, whom we'd first met at Ooh La La festival in Ways Mills, Quebec. Nadine had played with Cedar, their fiddler, at Flurry and NEFFA.
I was mixed about Nadine going, but she wanted to see that band, and also Claire and Sylvia were leaving soon for college. I had a choice. I could forbid her to go even though the medical people hadn’t objected; I could have sat stony-faced at the dance and glared at her; or I could just “let it be” and enjoy myself too. I chose to enjoy. It was a treat for me to see my friend (Sylvia's mom) Sue Klassen there, and other friends. The band really was amazing, including sets consisting of hot reels rolling in as great surprises after cool jigs.
Claire, Sylvia and Nadine were all out on the dance floor -- a threesome of close friends. Nadine made it through about 3 dances in her graceful way. She actually sat out in the middle of the third dance, which impressed me -- she really does pay attention to her body. As for me, I danced, danced, danced. We were planning on leaving after the break, but somehow we stayed on and made it through the end of the dance; Nadine really did take it easy; she did dance the last waltz. I got a video of her dancing one of the contra dances.
After the dance, however, both Nadine and I were concerned we'd stayed too late. Then, I couldn't find my car keys; after I found them, my car battery was dead (okay okay, I'd left the keys in the ignition), and the car had to "jumped". It was about midnight or later when we got home.
Nadine had a serious episode of panic terrified that she'd stayed too late and might get sick. I felt bad about having allowed it, and we had a subdued journey to bed. I guess it was inevitable that something like that could happen -- it felt pretty awful..
Friday morning, mercifully, she felt no bad effects, and had pleasant memories of the night before. Truthfully, so did I..
I’d invited the whole band Nor’Easter to visit us that morning -- they came around 11AM . Bouncy, wonderful folks. We gathered in the kitchen and started playing.(hurray for the piano in the kitchen). Nadine came down and brought her flute, and we played together -- Andrew and Noah joined us. Later on Nadine played one of her groove-style percussive originals and Max, the amazing mandolin guy, did the best groove-back-up I’ve ever heard with that piece. The two were AMAZING together. There were mixtures of music and lively conversation. Meanwhile the “kids” at the camp were outside on their lunch break, adding to the party atmosphere.
_______________________________
Friday night Nadine had her first night away from me since this she was diagnosed -- a sleep-over with Sylvia, with Claire visiting too before leaving to get ready for her going-away party. It went without mishap, although I called frequently to check up on her. My trust in Sue kept me somewhat “even”. The next day, Sylvia and Nadine worked on presents for Claire, and went shopping again -- Sue made sure they limited the time spent in Goodwill.
I took a long sunny drove to Genesee Country Museum alone to accompany the kids atr the Fiddlers' Faire, A long sunny drive, a fun place, and lots of fiddling. The concert was fun and reminded me of what I love. fterwards I played “tourist”, first touring the museum. On the way home.I stopped at a small festival in Scottsville, happy to be able to do some solitary wandering in the parched heat before returning.
That afternoon, I joined Nadine at Claire’s going-away party (Claire was leaving for college the very next day) and it was one amazing celebration. People were streaming around the lawn, by the lake, in the house, friendly and happy; much yummy food. The usual gaggle of teens was present, with someone on the swing, people in a circle, a group playing volley-ball. Betty presented the gorgeous quilt she’d made for Claire along with many others; I’d contributed a few stitches. Margaret, who was Claire’s theory teacher as well as being Nadine’s composition teacher, was there and got to meet our homeschooling friends. The party went on into dinner and more socializing. There were pictures of Claire at all ages. I have warm feelings for many of the people there -- there were a few I had wanted to get to know better, and this was able to happen..
Nadine was having a fine time bouncing responsibly in her flowing silk scarf. She even went down to the lake with the other teens, wading a little -- she couldn’t go in even close to all the way. Finally people left, hugging Claire one by one. I got my hug. Nadine and Sylvia were the last teens to leave, with special warm hugging, and finally we left.
Sunday, August 16, 2009
This Week -- Blurry Vision and Delayed Chemo
On Wednesday Nadine's counts weren't back up high enough -- it meant the next chemo round was delayed. It panicked me a bit, but everyone assured me it happens to most people at some point and wouldn't hurt her. Rather than testing her on Friday and giving her the chemo if her counts went back up, they decided she'd best wait a week so her body could more fully recover from the last onslaught. The antibiotic (Bactrum) she takes to protect her from pneumococcal pneumonia (which is relatively common and harmless to most people but scarily dangerous to her) was pronounced the most likely suspect for the delayed counts. It'll be replaced with another antibiotic, nicknamed "The Yellow Paint", looking like yellow paint with an obnoxiously gritty texture. It's supposed to be really gross, which is why they tried the nicer one first.
She still got the weekly injection of asparaginase into her front-leg muscle. This one hurts.
Nadine suddenly needs reading glasses, as her close-up vision got blurry -- her eyes changed to being farsighted-- it's known as a side effect from one or two of the "symptom" medicines (fortunately not the chemo). She grabbed my reading glasses and they worked. Although they'll experiment to see what's doing it, Nadine said she'd gladly put up with needing glasses rather than going back to being super-nauseated and having too much "spit". Weird stuff popping up again. The medical staff is trying to figure out what to do with this one.
It was a long day in clinic as everyone was wildly busy, and it ran late until they found out her blood counts. This was followed by the usual hour-long wait after the aspariginase injection, to make sure there was no reaction. We ran into Melissa and her son Vasilli, who is her age and was admitted to the hospital for leukemia about a year ago. He's back dancing ballet. We shared notes before his meds were ready.
She was pretty exhausted Tuesday Wednesday and Thursday and spent most of the day upstairs, still enjoying listening to the fiddle camp and enjoying the picnic, but resting a huge amount. She seems to come "out" some later in the day.
She still got the weekly injection of asparaginase into her front-leg muscle. This one hurts.
Nadine suddenly needs reading glasses, as her close-up vision got blurry -- her eyes changed to being farsighted-- it's known as a side effect from one or two of the "symptom" medicines (fortunately not the chemo). She grabbed my reading glasses and they worked. Although they'll experiment to see what's doing it, Nadine said she'd gladly put up with needing glasses rather than going back to being super-nauseated and having too much "spit". Weird stuff popping up again. The medical staff is trying to figure out what to do with this one.
It was a long day in clinic as everyone was wildly busy, and it ran late until they found out her blood counts. This was followed by the usual hour-long wait after the aspariginase injection, to make sure there was no reaction. We ran into Melissa and her son Vasilli, who is her age and was admitted to the hospital for leukemia about a year ago. He's back dancing ballet. We shared notes before his meds were ready.
She was pretty exhausted Tuesday Wednesday and Thursday and spent most of the day upstairs, still enjoying listening to the fiddle camp and enjoying the picnic, but resting a huge amount. She seems to come "out" some later in the day.
Saturday, August 15, 2009
Amazing Grace
I was sitting at the piano feeling wistful when I felt a beautifully gentle touch on my shoulders. I looked up and there was Nadine gently rubbing my shoulders and neck. I can't describe the joyous emotion I felt over those three minutes before she returned to the couch. Her gifts of love are boundless.
TLC -- Teens Living with Cancer
On Wednesday evening the local group Teens Living with Cancer had a picnic. I'd been on the phone with them -- a "group" -- people had urged Nadine and me to go to something (parents get together too). My first thoughts right after this started was "Why do I need an extra group of people? We have plenty of community" and indeed we do. Nadine in turn didn't feel up to going to anything anyway. However, over the last few weeks I've felt the need to be face-to-face with people living day-to-day or year-to-year with all of this, and Nadine was up to going Wednesday, and the picnic was happening....The "kids" would be having a dinner picnic, with parents invited for dessert. Soon families arrived.
It took place at the home of Lauren Spiker, who is courageous and gracious, determined that there be a place for these teens to be together; we met Leah, a young-adult cancer survivor who also works with the group. There was a beautiful garden there. It being my birthday, Nadine had asked what I'd wanted and I'd suggested a short excursion to the park. However, she hadn't been up to it after her (reduced) chemo that day, and we'd gone back home. And there was a garden that could rival any park, resplendent in magnificent colors of flowers cascading.
Families started arriving with glossy-eyed, vivacious teen girls -- they quickly took Nadine into their company, Nadine responded like "one of the pack" and all of them trooped off. Two young men arrived a bit later. I peeked over, and all looked happy to be together. One of the other moms was there, and we ended up spending the time there in another room -- we were offered dinner too, and chatted about music, art, and teens with cancer all at once. Later, other parents arrived, and there was much talk and commonality. I felt we all had something to add. There was a pair of young people who had just gotten married the past Saturday, each survivors. For all of us, living with cancer was a part of our lives, and yet we celebrated the other parts as well (I was afraid that cancer would be the only topic). I realize there are some kinds of help that can only come from other families on this road -- I in turn am happy to share what I've experienced.
After dinner everyone had dessert together; then some kind of contraption game like a three-legged race on boards. Phone numbers were exchanged; there is another activity next Tuesday night.
One of the girls had a "head" of curly hair -- her original hair was straight. We've heard that when hair grows back, it's often different in color and texture than it started. I'm not looking forward to this change if it happens -- I want Nadine's hair just the way it was. But Nadine is excited about the possibility of a change -- right now she's rooting for dark and straight I think. Oh well, it's not like either of us get to choose.
Oh yes, there was also Kim, a glossy-black-haired young adult whom I met briefly at the hospital. She was diagnosed with acute lymphoblastic leukemia at about 21 (about 4 years ago) and was on the same floor (414) that Nadine had been on. Since then, she went to nursing school and just graduated. Happily, she now has a job as a nurse on 414, the same floor she was on as a leukemia patient! Nadine told me one of the nurses said that she, too, would make a good nurse.
People stayed on until it was close to dark, before dispersing in the slow kind of way that people do in nice kinds of gatherings. Lauren accompanied us to the car and waved to us.
It was both a fun and inspiring day -- I'm so happy Nadine and I both can be with these folks.
It took place at the home of Lauren Spiker, who is courageous and gracious, determined that there be a place for these teens to be together; we met Leah, a young-adult cancer survivor who also works with the group. There was a beautiful garden there. It being my birthday, Nadine had asked what I'd wanted and I'd suggested a short excursion to the park. However, she hadn't been up to it after her (reduced) chemo that day, and we'd gone back home. And there was a garden that could rival any park, resplendent in magnificent colors of flowers cascading.
Families started arriving with glossy-eyed, vivacious teen girls -- they quickly took Nadine into their company, Nadine responded like "one of the pack" and all of them trooped off. Two young men arrived a bit later. I peeked over, and all looked happy to be together. One of the other moms was there, and we ended up spending the time there in another room -- we were offered dinner too, and chatted about music, art, and teens with cancer all at once. Later, other parents arrived, and there was much talk and commonality. I felt we all had something to add. There was a pair of young people who had just gotten married the past Saturday, each survivors. For all of us, living with cancer was a part of our lives, and yet we celebrated the other parts as well (I was afraid that cancer would be the only topic). I realize there are some kinds of help that can only come from other families on this road -- I in turn am happy to share what I've experienced.
After dinner everyone had dessert together; then some kind of contraption game like a three-legged race on boards. Phone numbers were exchanged; there is another activity next Tuesday night.
One of the girls had a "head" of curly hair -- her original hair was straight. We've heard that when hair grows back, it's often different in color and texture than it started. I'm not looking forward to this change if it happens -- I want Nadine's hair just the way it was. But Nadine is excited about the possibility of a change -- right now she's rooting for dark and straight I think. Oh well, it's not like either of us get to choose.
Oh yes, there was also Kim, a glossy-black-haired young adult whom I met briefly at the hospital. She was diagnosed with acute lymphoblastic leukemia at about 21 (about 4 years ago) and was on the same floor (414) that Nadine had been on. Since then, she went to nursing school and just graduated. Happily, she now has a job as a nurse on 414, the same floor she was on as a leukemia patient! Nadine told me one of the nurses said that she, too, would make a good nurse.
People stayed on until it was close to dark, before dispersing in the slow kind of way that people do in nice kinds of gatherings. Lauren accompanied us to the car and waved to us.
It was both a fun and inspiring day -- I'm so happy Nadine and I both can be with these folks.
Tuesday, August 11, 2009
Wilted but Occasionally Perky -- , Music Comes to The Door
Over the last few days, although we've had fun, Nadine started to feel awful again-- although she did get cheered up by the fiddle camp that literally came to her door, and seems to "take breaks" from her illness, to join the fun and even play some flute with people, her body language and face animated, before going back upstairs to rest. She can hear the music from her bedroom.
Her blood counts went down (really low but normal) but didn't go back up as expected by now. She started getting tired, circles under the eyes, queasy in the tummy, pale, etc., and once again I cried about it. The person at the clinic said she doesn't expect Nadine's platelets to be high enough to start her next chemo cycle today, although she'll get a blood test to make sure. She may get another transfusion today. It's so hard to see her like this again.
There were some cheery times. She perked up yewterday for about 20 minutes to play flute at a really nice jam session at the music workshop. She got a surprise -- Andrew and Noah Van Norstrand, two lively, wonderful young musicians who she enjoys seeing and knows from Ashokan and other spots, were teaching at the workshop here -- they had no idea she was here, and were enthused to see her. She visited some with them, and came down and played some tunes with the fiddle-camp group. She had fun watching Andrew and Noah's short and lively concert. Later she joked around with them and others.
I was thrilled to be able to do piano for some of the camp -- I'd sure missed that. Sometimes I don't realize how much I've missed something until I go back to it. Accompanying and enhancing a group of about 20 young musicians was a treat. And hearing the music around me all day was a pleasure.
Later, I sat at the piano in the kitchen (what a gift to have it there) and created an improvised waltz, and also found myself playing some old and overplayed but achingly beautiful waltzes (South Wind and Shebag and Sh'More). Sometimes when I put my hands on the piano I have no idea what will come out.
We can't travel far to participate in music -- it's a treat to have the music come to us.
I had a nice morning talk with Alice, who is a very caring person and a wonderfully sensitive and lively musician as well. I had enjoyed her improvising earlier.
I invited Andrew and Noah to have dinner with us last night -- our first dinner guests since we moved here. We had the meal outside at the picnic table, just perfect. Nadine was downstairs for the occasion, and had a nice talk with them. Afterwards they rehearsed in the performance area, Nadine went up to bed, and I did some music and went up here. She could hear the rehearsal from her bedroom and liked it.
I took out the hammock and lay on it for about 10 minutes, watching the trees and leaves rocking gently against the pre-sunset sky. It's already starting to get dark earlier, but not too early yet. The short relaxation was a gift.
Well, enough for today. Back getting ready for clinic. I'm glad for the gifts we've received in the middle of all of this.
Her blood counts went down (really low but normal) but didn't go back up as expected by now. She started getting tired, circles under the eyes, queasy in the tummy, pale, etc., and once again I cried about it. The person at the clinic said she doesn't expect Nadine's platelets to be high enough to start her next chemo cycle today, although she'll get a blood test to make sure. She may get another transfusion today. It's so hard to see her like this again.
There were some cheery times. She perked up yewterday for about 20 minutes to play flute at a really nice jam session at the music workshop. She got a surprise -- Andrew and Noah Van Norstrand, two lively, wonderful young musicians who she enjoys seeing and knows from Ashokan and other spots, were teaching at the workshop here -- they had no idea she was here, and were enthused to see her. She visited some with them, and came down and played some tunes with the fiddle-camp group. She had fun watching Andrew and Noah's short and lively concert. Later she joked around with them and others.
I was thrilled to be able to do piano for some of the camp -- I'd sure missed that. Sometimes I don't realize how much I've missed something until I go back to it. Accompanying and enhancing a group of about 20 young musicians was a treat. And hearing the music around me all day was a pleasure.
Later, I sat at the piano in the kitchen (what a gift to have it there) and created an improvised waltz, and also found myself playing some old and overplayed but achingly beautiful waltzes (South Wind and Shebag and Sh'More). Sometimes when I put my hands on the piano I have no idea what will come out.
We can't travel far to participate in music -- it's a treat to have the music come to us.
I had a nice morning talk with Alice, who is a very caring person and a wonderfully sensitive and lively musician as well. I had enjoyed her improvising earlier.
I invited Andrew and Noah to have dinner with us last night -- our first dinner guests since we moved here. We had the meal outside at the picnic table, just perfect. Nadine was downstairs for the occasion, and had a nice talk with them. Afterwards they rehearsed in the performance area, Nadine went up to bed, and I did some music and went up here. She could hear the rehearsal from her bedroom and liked it.
I took out the hammock and lay on it for about 10 minutes, watching the trees and leaves rocking gently against the pre-sunset sky. It's already starting to get dark earlier, but not too early yet. The short relaxation was a gift.
Well, enough for today. Back getting ready for clinic. I'm glad for the gifts we've received in the middle of all of this.
This week-end was a happy family time with Nadine's brother Erek visiting. One of those times without many events to report, only niceness. We had missed him after he spent a month with us early on. Lots of cooking -- French toast, pancakes, potato puffs, Mexican style food. Board games old and new (Rummy and Dominion) with appropriate conniving. Short walks with Nadine and long walks with just Erek and me. Erek and Nadine went off in the car together on a mission to get house supplies and also to get a well-deserved break from me. And lots of that wonderful pleasant quiet time when we didn't do much of anything except enjoying being together.
Erek is wonderful with Nadine when she isn't feeling well as well as when she is -- he's been a part of the "team" since he spent a month with us.
We enjoyed the thunderstorms, even though the lightning at night coming through the skylight kept me up and I couldn't figure out how to close the curtain over it.
On Monday a fiddle "camp" arrived at the music school-- this has been wonderful, hearing all the music. Music in rooms and music under two outdoor tents. Nadine and I know four of the teachers, which helps too -- two of them, from near Syracuse, were mighty surprised (happily) to see Nadine here, and she was happy to see them too. The physical therapist came by and gave Nadine more advanced exercises to do.
I was invited to do some piano with the camp, and I'm hrilled to be able to do it. What a treat. NAdine was invited to participate in any way she wants, which is nice too. I'm especially loving hearing the cellos on the lively music. The camp is expected to go on for the week.
The day Erek left, I went off by myself to allow Erek and Nadine to have a nice chunk of "alone time" together. Then we drove off to the airport, there was a nice farewell, he went to into the terminal, I cried, and that was that.
Erek is wonderful with Nadine when she isn't feeling well as well as when she is -- he's been a part of the "team" since he spent a month with us.
We enjoyed the thunderstorms, even though the lightning at night coming through the skylight kept me up and I couldn't figure out how to close the curtain over it.
On Monday a fiddle "camp" arrived at the music school-- this has been wonderful, hearing all the music. Music in rooms and music under two outdoor tents. Nadine and I know four of the teachers, which helps too -- two of them, from near Syracuse, were mighty surprised (happily) to see Nadine here, and she was happy to see them too. The physical therapist came by and gave Nadine more advanced exercises to do.
I was invited to do some piano with the camp, and I'm hrilled to be able to do it. What a treat. NAdine was invited to participate in any way she wants, which is nice too. I'm especially loving hearing the cellos on the lively music. The camp is expected to go on for the week.
The day Erek left, I went off by myself to allow Erek and Nadine to have a nice chunk of "alone time" together. Then we drove off to the airport, there was a nice farewell, he went to into the terminal, I cried, and that was that.
Saturday, August 8, 2009
From Yucky to Friends and Contra Dancing, Two
Okay, here's the post including the visit from friends, playing music, a dinner party, and going dancing, among other things.
On Wednesday morning Nadine took it easy. Nadine had her first home visit from a physical therapist -- I'd put it off until Nadine was up to it. She showed Nadine stretches and strengthening work. I was amazed at how strong Nadine was, even though she had been so inactive for so long. Lifts, etc.
Some wonderful friends, the Guertins, came in to visit from Vermont Tuesday evening. Their 3 teen-age "kids" were close friends of Nadine's, and the parents are wonderful too. We know them through music festival and event circles (including Ashokan), and stayed with them after the Champlain Valley Festival last year, with about-knee-deep mud amidst which we'd danced and enjoyed ourselves anyway. We had hosted their daughter Gillian for camping there. When we spent the night at their place afterwards, I'd declined to enter their home until someone could get me a bowl to wash my feet and legs in. Sylvia met them this year when we brought her and Rafi to Dance Flurry, and Sylvia's mom (and my dear friend) Sue had met them when they visited us at MacDonald House, and had extended them an invitation to stay from Tues through Friday.
On Wednesday we had a wonderful visit with them(and the Klassens) at the Klassens' house, much hanging out, cooking, fun, laughter. We arrived just in time for luscious Indian food for lunch, which Nadine ate with gusto. The kids, including Nadine, romped and laughed and hugged and were delightful for the afternoon; I thoroughly enjoyed all of it. They took over the family room. There was a lot of petting of Nadine's fuzzy head. A lot of smiling and joking.
Nadine took a walk in the woods with the other 4 "kids", going over the rickety bridge, up the outdoor stairs, and everything. Nadine had recently tired when walking from one end of the lot to the other.
Dinner was Mexican food, cooked by a slew of people including Nadine, again amidst merriment. Ten of us (the 5 Guertins, the 3 Klassens, Nadine and me) sat at a long table, hands held around the table, then delicious dishes of food passed around. I was happy to contribute the farm-raised ground beef for the meal. There was plenty of talk about math -- all 5 Guertins are into math, Diane teaches it and Gillian just got into MIT, Victor Klassen is a physicist, Sue used to teach math, and Sylvia plans to study math at college.
During our conversation during the day I discovered that the Guertins are avid players of Settlers and similar games (like Puerto Rico, which we have). I lamented that we hadn't brought our game over. It was just fine -- they had brought theirs, including the extension set. So a lively game ensued -- there were 7 of us for 6 spots, so Dave and Diane teamed up, and it was fun to sit next to them and watch them do it. Much conniving, much strategizing and manipulating, the works -- what fun to find a family I already have a lot in common with have more in common. Nadine got into playing of course.
Afterwards, I was ready for bed. The kids weren't. They had still taken over the family room, heads on laps, conversations, etc., at first lively, then winding down but still fun.
I realized that Nadine's health would benefit more from fun than from coddling, so I brought down a blanket, they welcomed it over all of them, and I went up to Nathan's room where I had been "assigned" for the night. Needless to say, Nadine didn't join me -- she wanted to sleep on the family room couch, where her friends were.
The next morning, I was late for breakfast (by a little) in the interest of taking a shower. Nadine was down there -- I was surprised she made it that early. There was lots of conversation and fun again.
Jessie the nurse came, and accessed Nadine's port and drew blood for labwork with an audience of Nadine's interested friends -- no sweat.
Nadine was lobbying to get to go to the Thursday night contra dancethat night -- everyone else was going. She asked Jessie in front everyone -- I expected a "no" but she said it should be fine. There would be an announcement at the dance about hand sanitizer-- this could be done. I was worried about her going, but I'd brought masks just in case she did. Jessie and I thought Nadine's blood counts would be up, judging from how she felt.
After that, Nadine joined a musical jam session with Neil, Stuart, and Gillian. I did piano at first, but felt it was better teens-only, so I bowed out and enjoyed listening and taking pictures. What a treat. Afterward, Nadine decided to lie down on the couch -- I appreciate her sensitivity to what she needs.
Margaret the nurse called -- Nadine's counts were low after all, a surprise given her energy level. The neutrophil count was low, and the platelets were at 14,000, really low, and red cells were borderline. She'd need a platelet transfusion, but Margaret was willing to put it off until the next day.
To my surprise, Margaret felt the dance would STILL be a nice idea for Nadine, as it would be nice for her to have some fun. I was figuratively quaking about it. Oh dear.
Another game of Settlers was played, and off we went to the wonderful dinner party in Rochester in honor of Sylvia's leaving for college. Nadine had a super-fine time there. There were tasteful placements of hand sanitizer, and an announcement was made at "circle". It was a buffet, but Sue thought of having Nadine get her food first -- all was done well. We sat outside and I loved watching Nadine visiting so many friends.
Afterwards, we went off to the dance!! A large number of people from Sylvia's party went, including many newcomers. When we arrived, we were greeted by Nancy Spero, the caller, who was from Ithaca -- she seemed really happy to see Nadine out there again. She made an announcement from the stage that people should use hand sanitizer so Nadine could dance, and about 100 people swarmed to the stage to wash up.
Nadine promptly joined the dancing, and she looked completely energetic. She could barefly climb stairs, but she could dance! Graceful and energetic. A friend who danced with her said she was "zesty". Her friends were there with her, and the friends from the contra dance community. She knew to sit out when needed, and danced about 3 or 4 dances. As for me, I loved being able to dance again. The band was superb, and I felt energetic as well. We stayed until the first half was over; then we chatted with friends. There were many hugs and "byes", with the Guertins (who were leaving the next day), as well as friends from the community. Finally we left around 10:15.
We picked up Nadine's brother Erek at the airport that night, and another phase began, to be "written" about later.
On Wednesday morning Nadine took it easy. Nadine had her first home visit from a physical therapist -- I'd put it off until Nadine was up to it. She showed Nadine stretches and strengthening work. I was amazed at how strong Nadine was, even though she had been so inactive for so long. Lifts, etc.
Some wonderful friends, the Guertins, came in to visit from Vermont Tuesday evening. Their 3 teen-age "kids" were close friends of Nadine's, and the parents are wonderful too. We know them through music festival and event circles (including Ashokan), and stayed with them after the Champlain Valley Festival last year, with about-knee-deep mud amidst which we'd danced and enjoyed ourselves anyway. We had hosted their daughter Gillian for camping there. When we spent the night at their place afterwards, I'd declined to enter their home until someone could get me a bowl to wash my feet and legs in. Sylvia met them this year when we brought her and Rafi to Dance Flurry, and Sylvia's mom (and my dear friend) Sue had met them when they visited us at MacDonald House, and had extended them an invitation to stay from Tues through Friday.
On Wednesday we had a wonderful visit with them(and the Klassens) at the Klassens' house, much hanging out, cooking, fun, laughter. We arrived just in time for luscious Indian food for lunch, which Nadine ate with gusto. The kids, including Nadine, romped and laughed and hugged and were delightful for the afternoon; I thoroughly enjoyed all of it. They took over the family room. There was a lot of petting of Nadine's fuzzy head. A lot of smiling and joking.
Nadine took a walk in the woods with the other 4 "kids", going over the rickety bridge, up the outdoor stairs, and everything. Nadine had recently tired when walking from one end of the lot to the other.
Dinner was Mexican food, cooked by a slew of people including Nadine, again amidst merriment. Ten of us (the 5 Guertins, the 3 Klassens, Nadine and me) sat at a long table, hands held around the table, then delicious dishes of food passed around. I was happy to contribute the farm-raised ground beef for the meal. There was plenty of talk about math -- all 5 Guertins are into math, Diane teaches it and Gillian just got into MIT, Victor Klassen is a physicist, Sue used to teach math, and Sylvia plans to study math at college.
During our conversation during the day I discovered that the Guertins are avid players of Settlers and similar games (like Puerto Rico, which we have). I lamented that we hadn't brought our game over. It was just fine -- they had brought theirs, including the extension set. So a lively game ensued -- there were 7 of us for 6 spots, so Dave and Diane teamed up, and it was fun to sit next to them and watch them do it. Much conniving, much strategizing and manipulating, the works -- what fun to find a family I already have a lot in common with have more in common. Nadine got into playing of course.
Afterwards, I was ready for bed. The kids weren't. They had still taken over the family room, heads on laps, conversations, etc., at first lively, then winding down but still fun.
I realized that Nadine's health would benefit more from fun than from coddling, so I brought down a blanket, they welcomed it over all of them, and I went up to Nathan's room where I had been "assigned" for the night. Needless to say, Nadine didn't join me -- she wanted to sleep on the family room couch, where her friends were.
The next morning, I was late for breakfast (by a little) in the interest of taking a shower. Nadine was down there -- I was surprised she made it that early. There was lots of conversation and fun again.
Jessie the nurse came, and accessed Nadine's port and drew blood for labwork with an audience of Nadine's interested friends -- no sweat.
Nadine was lobbying to get to go to the Thursday night contra dancethat night -- everyone else was going. She asked Jessie in front everyone -- I expected a "no" but she said it should be fine. There would be an announcement at the dance about hand sanitizer-- this could be done. I was worried about her going, but I'd brought masks just in case she did. Jessie and I thought Nadine's blood counts would be up, judging from how she felt.
After that, Nadine joined a musical jam session with Neil, Stuart, and Gillian. I did piano at first, but felt it was better teens-only, so I bowed out and enjoyed listening and taking pictures. What a treat. Afterward, Nadine decided to lie down on the couch -- I appreciate her sensitivity to what she needs.
Margaret the nurse called -- Nadine's counts were low after all, a surprise given her energy level. The neutrophil count was low, and the platelets were at 14,000, really low, and red cells were borderline. She'd need a platelet transfusion, but Margaret was willing to put it off until the next day.
To my surprise, Margaret felt the dance would STILL be a nice idea for Nadine, as it would be nice for her to have some fun. I was figuratively quaking about it. Oh dear.
Another game of Settlers was played, and off we went to the wonderful dinner party in Rochester in honor of Sylvia's leaving for college. Nadine had a super-fine time there. There were tasteful placements of hand sanitizer, and an announcement was made at "circle". It was a buffet, but Sue thought of having Nadine get her food first -- all was done well. We sat outside and I loved watching Nadine visiting so many friends.
Afterwards, we went off to the dance!! A large number of people from Sylvia's party went, including many newcomers. When we arrived, we were greeted by Nancy Spero, the caller, who was from Ithaca -- she seemed really happy to see Nadine out there again. She made an announcement from the stage that people should use hand sanitizer so Nadine could dance, and about 100 people swarmed to the stage to wash up.
Nadine promptly joined the dancing, and she looked completely energetic. She could barefly climb stairs, but she could dance! Graceful and energetic. A friend who danced with her said she was "zesty". Her friends were there with her, and the friends from the contra dance community. She knew to sit out when needed, and danced about 3 or 4 dances. As for me, I loved being able to dance again. The band was superb, and I felt energetic as well. We stayed until the first half was over; then we chatted with friends. There were many hugs and "byes", with the Guertins (who were leaving the next day), as well as friends from the community. Finally we left around 10:15.
We picked up Nadine's brother Erek at the airport that night, and another phase began, to be "written" about later.
From Yucky To Contra Dancing
The week ends in happiness -- in spite of the vestiges of yuck. Nadine got appetite and energy, and there were visits from dear friends from Vermont, a dinner party, and Nadine going contra dancing!! (This spans two posts).
Tuesday was Nadine's check-up and weekly asparaginase shot (chemo) injection. She was feeling and looking wretched of wretched, having lost dinner the night before and throwing up twice in the treatment room, sending me scurrying down the hall for a bucket. Afterwards Margaret came in for a long troubleshooting session and a "game plan" was devised to hopefully counter these side-effects --- a behind-the-ear patch to try to dry up the spit, and a new anti-nausea medicine to replace the old one. Another med was added to avoid side effects from the new nausea med (sigh). Margaret also decided that a rest at home would be better than a transfusion right then (her levels were borderline).
Soon, it all started to work! The spit dried up, and that was normal. The nausea stopped. Along with it Nadine looked a lot more peaceful. There was talk of a transfusion, but Margaret decided Nadine would do better getting some rest, so I took her home.
At home, she lay on the couch and read me some jokes. I noticed that her voice was clear and strong. She napped after that. She wanted some homemade vegetable soup, which I made for her. When she napped, I went into the other room to write.
She wanted some home-made vegetable soup, which I made for her. I went into the other room to type journal, and returned.
She was walking around! She got her own soup! She might have been even washing dishes! What a gift! What a treat!
Soon bedtime came, and it was a joyful, peaceful event for a change. She looked a bit tired, but there was peace, and I celebrated!!!!
Although our wonderful friends from Vermont had arrived Tuesday night, I think it was wise that Nadine declined to go to see them until the morning. She wanted energy for the rest of the week, and she got it.
Tuesday was Nadine's check-up and weekly asparaginase shot (chemo) injection. She was feeling and looking wretched of wretched, having lost dinner the night before and throwing up twice in the treatment room, sending me scurrying down the hall for a bucket. Afterwards Margaret came in for a long troubleshooting session and a "game plan" was devised to hopefully counter these side-effects --- a behind-the-ear patch to try to dry up the spit, and a new anti-nausea medicine to replace the old one. Another med was added to avoid side effects from the new nausea med (sigh). Margaret also decided that a rest at home would be better than a transfusion right then (her levels were borderline).
Soon, it all started to work! The spit dried up, and that was normal. The nausea stopped. Along with it Nadine looked a lot more peaceful. There was talk of a transfusion, but Margaret decided Nadine would do better getting some rest, so I took her home.
At home, she lay on the couch and read me some jokes. I noticed that her voice was clear and strong. She napped after that. She wanted some homemade vegetable soup, which I made for her. When she napped, I went into the other room to write.
She wanted some home-made vegetable soup, which I made for her. I went into the other room to type journal, and returned.
She was walking around! She got her own soup! She might have been even washing dishes! What a gift! What a treat!
Soon bedtime came, and it was a joyful, peaceful event for a change. She looked a bit tired, but there was peace, and I celebrated!!!!
Although our wonderful friends from Vermont had arrived Tuesday night, I think it was wise that Nadine declined to go to see them until the morning. She wanted energy for the rest of the week, and she got it.
Tuesday, August 4, 2009
A Wonderful, Enormous, Inspiring Surprise
We have received wonderful gifts of love. Recently, Nadine got a wonderful wondeful surprise., She won, and Rachel Bell delivered, the beautiful, huge, worked-on-by-about-a-hundred-people-over-a-year Ashokan "Northern Week" Music and Dance Camp quilt! And an Ashokan teeshirt onto which David Kaynor transcribed the music to a wonderful tune created at Ashokan in her honor, called "March of the Cucumbers", on an Ashokan teeshirt, also signed by lots and lots of people.
It warms me SO MUCH to see my daughter's eyes bright as she feels the love of those around her.
Rachel's arrived on Thursday totally surprised Nadine by delivering them to her (with me in the complicity).
Yay Ashokan! Yay Rachel! What a community!
During Ashokan Week (July 19th through 25th) Nadine was lying on the couch when she smiled wildly and announced she'd gotten an email that she'd won the gorgeous hand-made quilt. She hadn't, of course, bought a raffle ticket -- she wasn't there.. Apparently there was a dedicated "movement" at Ashokan for buying raffle tickets and sticking Nadine's name on them. The email said something like "Remember the gorgeous quilt for raffle>? You won it!!!!"
Shortly afterwards, she had another installment of wild happiness -- someone emailed a video of a group of performers including Jay Ungar, David Kaynor, Rachel, and a bunch of other people, performing a brand new tune called The March of the Cucumbersw at the Ashokan Thursday night concert -- repeated a suitable number of times, it was greeted by a tremendous ruckus from the audience.
Rachel emailed last night that she wanted to come by to deliver the things, and I arranged it as a surprise. At one point I was on the phone in the hospital bathroom to keep Nadine from overhearing me.
Last Thursday afternoon after we came back from the apartment at Alice's music school, we retunred to the house. Nadine had little energy and "set up" on the couch. I kept her company and did some music.
when the doorbell rang, I answered and pretended it was someone else; Rachel arrived with the quilt and teeshirt.
Nadine was just thrilled!!!!! She talked happily, her beautiful face animated.
I'm going to use Rachel's letter to our Ashokan friends, as it says it so well:
"She immediately wrapped up in the quilt and petted it and studied it. Over and over, "I can't believe it. It's so beautiful. I don't know what to say." It's so precious to her, it meant the world to her that so many of you put so much loving work into this work of art. She spent a long time studying the shirt, reading all the signatures and notes. she really was thrilled with it all. laughed at many of the notes people wrote to her on the shirt, especially the fruit references. It was fun to see her smiling as she read each name and talked about so many of her fond memories of Ashokan and of all these people. She loves the tune and greatly admired david kaynor's transcription of it onto the shirt."
Having to miss Ashokan was a hard blow for us, and knowing these people, from different parts of the country, consider her so much a part of their lives is inspiring.
I want to post my pictures of the event, and have to wait until I get the right cord and can use my own computer.
My heartfelt thanks to everyone who has been there for and with us, in every possible way. I am in awe.
___________________________
For those of you who are unfamiliar with Ashokan Fiddle and Dance Camp (Northern Week), it is an amazing week-long music and dance retreat, full of community, music, workshops, classes, jam sessions, food, conversations, beautiful countryside, inspiration, mutual support, and humor. It has been an important part of our lives. It is an important place where Nadine and I found community, inspiration, friendships, and skills.
It warms me SO MUCH to see my daughter's eyes bright as she feels the love of those around her.
Rachel's arrived on Thursday totally surprised Nadine by delivering them to her (with me in the complicity).
Yay Ashokan! Yay Rachel! What a community!
During Ashokan Week (July 19th through 25th) Nadine was lying on the couch when she smiled wildly and announced she'd gotten an email that she'd won the gorgeous hand-made quilt. She hadn't, of course, bought a raffle ticket -- she wasn't there.. Apparently there was a dedicated "movement" at Ashokan for buying raffle tickets and sticking Nadine's name on them. The email said something like "Remember the gorgeous quilt for raffle>? You won it!!!!"
Shortly afterwards, she had another installment of wild happiness -- someone emailed a video of a group of performers including Jay Ungar, David Kaynor, Rachel, and a bunch of other people, performing a brand new tune called The March of the Cucumbersw at the Ashokan Thursday night concert -- repeated a suitable number of times, it was greeted by a tremendous ruckus from the audience.
Rachel emailed last night that she wanted to come by to deliver the things, and I arranged it as a surprise. At one point I was on the phone in the hospital bathroom to keep Nadine from overhearing me.
Last Thursday afternoon after we came back from the apartment at Alice's music school, we retunred to the house. Nadine had little energy and "set up" on the couch. I kept her company and did some music.
when the doorbell rang, I answered and pretended it was someone else; Rachel arrived with the quilt and teeshirt.
Nadine was just thrilled!!!!! She talked happily, her beautiful face animated.
I'm going to use Rachel's letter to our Ashokan friends, as it says it so well:
"She immediately wrapped up in the quilt and petted it and studied it. Over and over, "I can't believe it. It's so beautiful. I don't know what to say." It's so precious to her, it meant the world to her that so many of you put so much loving work into this work of art. She spent a long time studying the shirt, reading all the signatures and notes. she really was thrilled with it all. laughed at many of the notes people wrote to her on the shirt, especially the fruit references. It was fun to see her smiling as she read each name and talked about so many of her fond memories of Ashokan and of all these people. She loves the tune and greatly admired david kaynor's transcription of it onto the shirt."
Having to miss Ashokan was a hard blow for us, and knowing these people, from different parts of the country, consider her so much a part of their lives is inspiring.
I want to post my pictures of the event, and have to wait until I get the right cord and can use my own computer.
My heartfelt thanks to everyone who has been there for and with us, in every possible way. I am in awe.
___________________________
For those of you who are unfamiliar with Ashokan Fiddle and Dance Camp (Northern Week), it is an amazing week-long music and dance retreat, full of community, music, workshops, classes, jam sessions, food, conversations, beautiful countryside, inspiration, mutual support, and humor. It has been an important part of our lives. It is an important place where Nadine and I found community, inspiration, friendships, and skills.
Days Continued -- Another Long Catch-Up Post
Another long catch-up. Friday was a peaceful morning and a peaceful day. Nadine had a sparkle back in her eyes, even though she wtill was uncomfrotable, not ready to go walking though. It was a gorgeous day outside too.
Nadine had announced on Thursday that she wasn't up to doing the National Flute Association high school flute choir at the NFA Convention in New York City next week. This was a sad loss. We'd both hoped she could do it. Finally, at Nadine's urging, I called the conductor of the flute choir and explained; amazingly, she said that Nadine didn't have to cancel right then, and encouraged her to wait until maybe 2 days before the performance to make a final decision. Wow! What an affirmation.
Nadine had placed Number One out of all the flutists who had auditioned nationwide, and was getting a solo in the performance, a huge honor. She had prepared a beauytiful audition recording on both regular (soprano) and alto flute. The alto had sounded magnificent-- i had previously regarded it as a mediocre instrumenht that was neither high nor rich-low. I was wrong -- the alto seems to wed the timbres of high and low to create an unparalleled richness. The piece had had some lyric parts and some resembling a bumblebee (I didn't know an alto flute was capable of that).
A package arrived at the post office for Nadine from friends from Vancouver Canada, from friends at the Oregon Not Back To School Camp, another of Nadine's treasured summer "fixtures". It's sad that she won't be able to go to it this summer. Planes are off limits (due to the poor air) and the camp is too remote to be safe for her in case something goes wrong. She's a loved member of the community, and I know they won't forget her. Erek went there for years before she started. It's an amazing gathering.
On Friday evening Nadine was invited to Claire's house to watch a movie. Although Nadine was a bit weak, she insisted, and as Claire wasn't free the next night and is leaving soon for college, I trundled Nadine in the car and off we went. The girls promptly started watching and Nadine was happy. Betty suggested I walk down to the lake. I was only going to go outside the door, but of course I climbed down and sat with my feet in the water watching the green and peach pre-sunset ripple lines.
Barry arrived at about 10:30, right before Claire drove a very happy Nadine home. He brought a big bag of fresh vegetables from the local CSA -- they taste so "real".
_________________________________
On Saturday we had a "family morning". Barry made French toast and some kind of sweet syrup of malasses and sugar. Nadine was happy to see Barry. Nadine wanted me to do more music for her, always a pleasure.
Mary Joan arrived and worked with Nadine. She is an amazing person for helping Nadine to work with her body, and also does wonderful massage. She has insisted on continuing to come out work on Nadine week after week, at no charge, an amazing gift. She's also a wonderful person to hug.
I went back to Betty's place for another swim -- we swam laps together. I got in easily this time, maybe because it wasn't my first swim of the summer, and perhaps it was warmer too. This time, the water was wavy and reminded me of the ocean.
Later, Nadine was feeling pretty miserable, and I stayed with her. Barry, Nadine and I took a short walk together, which was gratifying. That night we all watched the movoe Nadine had watched the night before. Nadine said watching movies helps her feel better. She picked a nice one too.
Sunday was "Moving Day" to the new house. It was a very tough day, as Nadine was uncomfortable, and packing up never has come easily to me. Barry wasn't happy with helping either -- I can understand why, as he has enough to deal with taking care of the house in the Southern Tier. It took until close to 4PM before we finally slogged out of there. I'd thought it would be a "snap". Barry was also right -- I need to try to pare down what we have up here.
Diana had offered to help, and in retrospect I should have taken her up on it. Her company would have been welcome, and having another trusted person helping would have made it a lot easier, especially as Nadine was having a hard time as well.
We arrived, and the place looked really welcoming. Barry offered to help me unpack the car, and the stuff was piled in kitchen and bedroom. He left afterwards, after a nice farewell.
Afterwards, Nadine couldn't keep her mercaptopurine "down" and I had to call the doctor late to find out if she should have it again. I was advised to give her anti-nausea medication, wait a half hour, and try once more. It meant a late night, but at least she kept the medicine down this time. Nadine went to bed; I stayed up even later getting the kitchen organized, and collapsed.
______________________________________
On Monday morning, Jessie the nurse came over again to get bloodwork to check Nadine's "counts" and change her dressing. I realize I can change the dressing myself. Nadine had been having a new problem -- she is producing way too much saliva. Will these extra "things" give us a break? It's possible that she is swallowing enough to cause the nausea. Monday, she felt pretty miserable again!
Jessie said she didn't think Nadine's blood counts were too low, as she didn't have pale lips.
Nadine felt miserable for much of Monday, and I spent most of the day supporting her.
The hammock outside was a wonderful gift -- the place is pleasantly breezy and not buggy, and she was comfy out there. I brought a tray of foods she liked, and some books to read, and we had as pleasant a time as possible.
Speaking of gifts -- Janet Moncada from the homeschoolers' group drove by, saw us, and came over. Her 5-year-old daughter Margaret made a wonderful drawing for Nadine, and gave her a seashell and a beautiful heart decoration made out of metal and translucent colored glass. Nadine admired it --it looks wonderful with the sun behind it. Janet asked if I needed anything, and I mentioned a sheet and vegetable peeler, intending to try to borrow one. Janet dropped off a brand new sheet and vegetable peeler. We enjoyed the soft sheet last night, and I thought of Janet, and the gifts we have received in so many ways, after peeling a carrot for soup today.
I got a call from Margaret the nurse-practitioner. Nadine's counts were really LOW after all -- absolute neutrophil count was 300; anything under 1000 was considered neutropenic. Her red-blood count was low, at transfusion level, and her platelets were low. Imnmunologically compromised, albeit not unheard-of as part of the chemo cycle. Perhaps that contributed to her exhaustion.
With Nadine feeling the way she did, I couldn't leave her, and I needed to shop for food and stuff to keep the kitchen hygienic. Happily, Nadine's beloved friend Sylvia had returned from her week-long bicycle excursion and suggested coming by to visit Nadine. Sylvia came, Nadine was instantly happy, and Sylvia took my place cuddling Nadine on the couch while I went to Tops and got food and cleaning supplies. Then I cooked dinner for all of us while the girls shared a book.
After Sylvia left, I gave Nadine her medicine and it was bedtime.
Nadine had announced on Thursday that she wasn't up to doing the National Flute Association high school flute choir at the NFA Convention in New York City next week. This was a sad loss. We'd both hoped she could do it. Finally, at Nadine's urging, I called the conductor of the flute choir and explained; amazingly, she said that Nadine didn't have to cancel right then, and encouraged her to wait until maybe 2 days before the performance to make a final decision. Wow! What an affirmation.
Nadine had placed Number One out of all the flutists who had auditioned nationwide, and was getting a solo in the performance, a huge honor. She had prepared a beauytiful audition recording on both regular (soprano) and alto flute. The alto had sounded magnificent-- i had previously regarded it as a mediocre instrumenht that was neither high nor rich-low. I was wrong -- the alto seems to wed the timbres of high and low to create an unparalleled richness. The piece had had some lyric parts and some resembling a bumblebee (I didn't know an alto flute was capable of that).
A package arrived at the post office for Nadine from friends from Vancouver Canada, from friends at the Oregon Not Back To School Camp, another of Nadine's treasured summer "fixtures". It's sad that she won't be able to go to it this summer. Planes are off limits (due to the poor air) and the camp is too remote to be safe for her in case something goes wrong. She's a loved member of the community, and I know they won't forget her. Erek went there for years before she started. It's an amazing gathering.
On Friday evening Nadine was invited to Claire's house to watch a movie. Although Nadine was a bit weak, she insisted, and as Claire wasn't free the next night and is leaving soon for college, I trundled Nadine in the car and off we went. The girls promptly started watching and Nadine was happy. Betty suggested I walk down to the lake. I was only going to go outside the door, but of course I climbed down and sat with my feet in the water watching the green and peach pre-sunset ripple lines.
Barry arrived at about 10:30, right before Claire drove a very happy Nadine home. He brought a big bag of fresh vegetables from the local CSA -- they taste so "real".
_________________________________
On Saturday we had a "family morning". Barry made French toast and some kind of sweet syrup of malasses and sugar. Nadine was happy to see Barry. Nadine wanted me to do more music for her, always a pleasure.
Mary Joan arrived and worked with Nadine. She is an amazing person for helping Nadine to work with her body, and also does wonderful massage. She has insisted on continuing to come out work on Nadine week after week, at no charge, an amazing gift. She's also a wonderful person to hug.
I went back to Betty's place for another swim -- we swam laps together. I got in easily this time, maybe because it wasn't my first swim of the summer, and perhaps it was warmer too. This time, the water was wavy and reminded me of the ocean.
Later, Nadine was feeling pretty miserable, and I stayed with her. Barry, Nadine and I took a short walk together, which was gratifying. That night we all watched the movoe Nadine had watched the night before. Nadine said watching movies helps her feel better. She picked a nice one too.
Sunday was "Moving Day" to the new house. It was a very tough day, as Nadine was uncomfortable, and packing up never has come easily to me. Barry wasn't happy with helping either -- I can understand why, as he has enough to deal with taking care of the house in the Southern Tier. It took until close to 4PM before we finally slogged out of there. I'd thought it would be a "snap". Barry was also right -- I need to try to pare down what we have up here.
Diana had offered to help, and in retrospect I should have taken her up on it. Her company would have been welcome, and having another trusted person helping would have made it a lot easier, especially as Nadine was having a hard time as well.
We arrived, and the place looked really welcoming. Barry offered to help me unpack the car, and the stuff was piled in kitchen and bedroom. He left afterwards, after a nice farewell.
Afterwards, Nadine couldn't keep her mercaptopurine "down" and I had to call the doctor late to find out if she should have it again. I was advised to give her anti-nausea medication, wait a half hour, and try once more. It meant a late night, but at least she kept the medicine down this time. Nadine went to bed; I stayed up even later getting the kitchen organized, and collapsed.
______________________________________
On Monday morning, Jessie the nurse came over again to get bloodwork to check Nadine's "counts" and change her dressing. I realize I can change the dressing myself. Nadine had been having a new problem -- she is producing way too much saliva. Will these extra "things" give us a break? It's possible that she is swallowing enough to cause the nausea. Monday, she felt pretty miserable again!
Jessie said she didn't think Nadine's blood counts were too low, as she didn't have pale lips.
Nadine felt miserable for much of Monday, and I spent most of the day supporting her.
The hammock outside was a wonderful gift -- the place is pleasantly breezy and not buggy, and she was comfy out there. I brought a tray of foods she liked, and some books to read, and we had as pleasant a time as possible.
Speaking of gifts -- Janet Moncada from the homeschoolers' group drove by, saw us, and came over. Her 5-year-old daughter Margaret made a wonderful drawing for Nadine, and gave her a seashell and a beautiful heart decoration made out of metal and translucent colored glass. Nadine admired it --it looks wonderful with the sun behind it. Janet asked if I needed anything, and I mentioned a sheet and vegetable peeler, intending to try to borrow one. Janet dropped off a brand new sheet and vegetable peeler. We enjoyed the soft sheet last night, and I thought of Janet, and the gifts we have received in so many ways, after peeling a carrot for soup today.
I got a call from Margaret the nurse-practitioner. Nadine's counts were really LOW after all -- absolute neutrophil count was 300; anything under 1000 was considered neutropenic. Her red-blood count was low, at transfusion level, and her platelets were low. Imnmunologically compromised, albeit not unheard-of as part of the chemo cycle. Perhaps that contributed to her exhaustion.
With Nadine feeling the way she did, I couldn't leave her, and I needed to shop for food and stuff to keep the kitchen hygienic. Happily, Nadine's beloved friend Sylvia had returned from her week-long bicycle excursion and suggested coming by to visit Nadine. Sylvia came, Nadine was instantly happy, and Sylvia took my place cuddling Nadine on the couch while I went to Tops and got food and cleaning supplies. Then I cooked dinner for all of us while the girls shared a book.
After Sylvia left, I gave Nadine her medicine and it was bedtime.
Bye Bye Big Chemo, Solutions, New Place for August
Last Wednesday night I thought about what helps me feel good at night, and warm baths came to mind. I suggested one to Nadine, poured a nice one, supplied a favorite soap and bath "puff", and lo and behold, she smiled in the tub and was a happy girl. She was able to sleep well. unlike the night before.
Thursday was The Last Bigg Chemo of the spinal injection series. Early-morning was frazzled. No eating in the morning meant a very hungry Nadine; it had been a late night; I got up and had maybe 10 minutes to leave the house; I felt so dirty I had to shower anyway; we left late; we had to stop for gas; I didn't know where to get gas. Amazingly, we arrived only about 5 minutes late -- no problem. Whew.
Dr. Mullen, the head of the pediatric oncology department, examined Nadine. Her blood "counts" had dropped sharply but weren't abnormal; soon she'd probably be "neutropenic" (very low white blood count-- neutrophils in particular), which isn't uncommon during a chemo cycle. The cycle begins with a large chemo dose; blood counts generally drop (red bloood cells, white blood cells, platelets)as the chemo does its job; Nadine has to be extra infection-and bruising-shy and sometimes needs a transfusion, eventually the counts rise again as her body makes new cells, and if the count is high enough the next scheduled big-chemo-dose happens again.
The new prescription medicine helped get rid of the heartburn. Yay!
Dr. Mullen did the final chemo injection in Nadine's spinal cord. I was used to Margaret or Laurie (the nurse practitioners) doing it. I got seated with a better view than usual, and got to see every detail. It took Dr. Mullen two tries to get the needle in but Nadine's spinal fluid (this is not abnormal), and her spinal fluid dripped out agonizingly slowly (I was told this could happen after repeated procedures). The medicine was injected in and it was done.
BYE BYE BIGG CHEMO. All done!
Margaret came in with a timely talk about how Nadine might feel really bad these days, worse than in the hospital. This was strangely reassuring, as it meant that discomfort, awful as it is, doesn't necessarily mean something major is wrong. She described asparaginase iss "not nice". She said that at some time Nadine might want to give up on chemo, and that if this happened, neither her mom nor Margaret would let her. This knowledge, plus the info from Eric that at times she might seem young, helped me feel better about handling this miserable situation.
______________________________
Later that aftenroon, we visited the apartment at the Kanack School of Music that Alice offered us for the month of August . The school is a large and barn-rust-colored house with a white picket fence and gardens. The kitchen has a sliding door to the gardens, and there's a hammock. The performance area is two or three stories high, huge, with a stage. More on this later.
There's a piano in the kitchen, and a piano in my bedroom! And music-motifs all over the place.
Alice gave us The Tour, and apologized for not having more supplies for me. I can bring cookware, etc. She has two beds there, one in each bedroom.
Living at a music school! Waht a treat.
There was a lovely sign up, "Nadine and Barbara's Summer Home". Perfect.
Nadibne, in one of her beautiful scarves that Lauren Sample hand-dyed for her, was set up lying on the couch in the main performance room, looking cozy. She wasn't up to walking and looking around, but was still so sweet!
_____________________
After we returned to Webster, there was a special visit from Rachel Bell with gifts from Ashokan. It was so special that it's getting a special post!
I cooked rice for dinner. I spoke with Yvonne, a mother I'd met at the hospital, who lives in Rochester. Originally, Erek had met her jovial husband Jim in the hospital rec room. Her daughter, about Nadine's age, was in the hospital when Nadine was; each girl had made a bracelet for the other. The girl had made a beautiful drawing of flowers for Nadine, who couldn't have real flowers due to fungus risk. Now both girls are out; Yvonne and I hugged when she got out (shortly before Nadine did). Their family had suggested a visit, to which I look forward.
Nadine rested downstairs, and seemed weary. She wanted me to stay down with her, and I assured her that no matter how long it took to deal with the leukemia, even it was 10 or 20 years, I would be there for her.
We spent a nice evening with a dinner of chicken, rice, zuccini (from Betty's garden) and a light sauce. Nadine wanted to go to bed early, and I welcomed it, even though I had to scramble to get all my work done. Nadine had another bath, and we had the second easy night in a row.
Thursday was The Last Bigg Chemo of the spinal injection series. Early-morning was frazzled. No eating in the morning meant a very hungry Nadine; it had been a late night; I got up and had maybe 10 minutes to leave the house; I felt so dirty I had to shower anyway; we left late; we had to stop for gas; I didn't know where to get gas. Amazingly, we arrived only about 5 minutes late -- no problem. Whew.
Dr. Mullen, the head of the pediatric oncology department, examined Nadine. Her blood "counts" had dropped sharply but weren't abnormal; soon she'd probably be "neutropenic" (very low white blood count-- neutrophils in particular), which isn't uncommon during a chemo cycle. The cycle begins with a large chemo dose; blood counts generally drop (red bloood cells, white blood cells, platelets)as the chemo does its job; Nadine has to be extra infection-and bruising-shy and sometimes needs a transfusion, eventually the counts rise again as her body makes new cells, and if the count is high enough the next scheduled big-chemo-dose happens again.
The new prescription medicine helped get rid of the heartburn. Yay!
Dr. Mullen did the final chemo injection in Nadine's spinal cord. I was used to Margaret or Laurie (the nurse practitioners) doing it. I got seated with a better view than usual, and got to see every detail. It took Dr. Mullen two tries to get the needle in but Nadine's spinal fluid (this is not abnormal), and her spinal fluid dripped out agonizingly slowly (I was told this could happen after repeated procedures). The medicine was injected in and it was done.
BYE BYE BIGG CHEMO. All done!
Margaret came in with a timely talk about how Nadine might feel really bad these days, worse than in the hospital. This was strangely reassuring, as it meant that discomfort, awful as it is, doesn't necessarily mean something major is wrong. She described asparaginase iss "not nice". She said that at some time Nadine might want to give up on chemo, and that if this happened, neither her mom nor Margaret would let her. This knowledge, plus the info from Eric that at times she might seem young, helped me feel better about handling this miserable situation.
______________________________
Later that aftenroon, we visited the apartment at the Kanack School of Music that Alice offered us for the month of August . The school is a large and barn-rust-colored house with a white picket fence and gardens. The kitchen has a sliding door to the gardens, and there's a hammock. The performance area is two or three stories high, huge, with a stage. More on this later.
There's a piano in the kitchen, and a piano in my bedroom! And music-motifs all over the place.
Alice gave us The Tour, and apologized for not having more supplies for me. I can bring cookware, etc. She has two beds there, one in each bedroom.
Living at a music school! Waht a treat.
There was a lovely sign up, "Nadine and Barbara's Summer Home". Perfect.
Nadibne, in one of her beautiful scarves that Lauren Sample hand-dyed for her, was set up lying on the couch in the main performance room, looking cozy. She wasn't up to walking and looking around, but was still so sweet!
_____________________
After we returned to Webster, there was a special visit from Rachel Bell with gifts from Ashokan. It was so special that it's getting a special post!
I cooked rice for dinner. I spoke with Yvonne, a mother I'd met at the hospital, who lives in Rochester. Originally, Erek had met her jovial husband Jim in the hospital rec room. Her daughter, about Nadine's age, was in the hospital when Nadine was; each girl had made a bracelet for the other. The girl had made a beautiful drawing of flowers for Nadine, who couldn't have real flowers due to fungus risk. Now both girls are out; Yvonne and I hugged when she got out (shortly before Nadine did). Their family had suggested a visit, to which I look forward.
Nadine rested downstairs, and seemed weary. She wanted me to stay down with her, and I assured her that no matter how long it took to deal with the leukemia, even it was 10 or 20 years, I would be there for her.
We spent a nice evening with a dinner of chicken, rice, zuccini (from Betty's garden) and a light sauce. Nadine wanted to go to bed early, and I welcomed it, even though I had to scramble to get all my work done. Nadine had another bath, and we had the second easy night in a row.
Subscribe to:
Posts (Atom)