Catching Up September-October

A long catch-up for September and October -- more to come.

I'm not sure why I stopped posting. I was worried about boring my friends with the repeating "ups" and "downs", for me as well as Nadine. I know the swings will go on a long time, even the breakthroughs we've had. Also, as this is "me" writing, my own story inevitably gets tangled up in this -- I realize this will just happen, and there are some "ouches" there. This may sound silly, but through all these ups and downs there seems to be some intangible progression that I can't verbalize.

SEPTEMBER and OCTOBER -- Ups-and-downs, music, clinics, people in our lives, music, moving again, what-can-I-say. Here's the first long catch-up.

PAINT
The Yellow Paint is where I left off in September. The ugly-looking anti-biotic wasn't as obnoxious as anticipated, even if it is gooey and paint-like. After the uncleanable yellow-encrusted syringe was ousted, Nadine tried a two-ounce plastic scoop accompanied by "Green Machine" vegetable/micro-nutrient juice or yogurt. Later she devised a system of several spoons and glass jars, sopped up with paper towels afterwards. Finally, she picked the direct route, and started licking the "paint" out of a measuring spoon, much easier. Now she's thinking of taking it with applesauce.

WOUND HEALED FINALLY: (Okay, this is current late December -- the rest of this post is Sept-October). The bandage is off, after 5 months! This was from the removal of Nadine's "port" late last June. The complicated cleaning-maintainance process (done by me) gave way to progressively less complicated stuff, it started to "fill in" (sometimes with me needing to consult the wound-care lady to figure out if I was seeing normal healing or trouble); it shrank, and a few days ago the bandage finally came off. This was the wound caused by the removal of her defective port back in July!

SEPTEMBER: NADINE WEAK A LOT

Just the way it was. Not always, but way too much.

FRIENDS LEAVING FOR COLLEGE
September 4th: Nadine's friend Sylvia was leaving for college. The Night Before, Nadine helped Sylvia pack and organize, which was gratifying. It matters to Nadine, like to me, to be able to help other people out, even though we appreciate that people want to help us too. Even though Nadine felt queasy, she could flop down in the middle of the living room amidst boxes and packages, help decorate shoe boxes for in-room storage; later and provide help and camaradie in last-minute packing. And she could do her Nadine routine of sneaking in sweet notes amidst the clothing and papers into Sylvia's suitcases and boxes. On Leaving Day, we both "saw" Sylvia off on the tandem bicycle, on which she and her brother rode all the way to college in Canada.

For Nadine -- her buddies Sylvia and Claire will always be her buddies, but they won't be a short car-ride away everyday. Friends mean so much, and these girls were so nearby, so easy to "drop in" on and hug and giggle. She still intensely misses both Claire and Sylvia. The girls had had so many fun times, so many escapades, sharings, homegrown biology labs, lunches in French, birthdays. Often Betty and Sue and i would be together as well.

WHERE WE WERE SEPT-OCT

We still hadn't found a suitable place available by Sept. 10th, although we looked hard. Just when I thought we'd go back to the Southern Tier and commute, the wonderful Thurston family, whom we'd met through the youth orchestra, invited us to stay with them while waiting for a place. It was a gift to be there, and to get to know all of them.

A "ROUND" TABLE (MUSIC STYLE) AND FOOD

September ? -- At the dinner table, the Thurstons taught us a humorous round about "Smetana Dvorjak and Janecek's "curious rhythms",, complete with rhythms and hand motions. Nadine picked it up quickly. We've sung it a lot since then. George is an amazing chef, his specialties including lasagna, Indian style curies, quiche, etc. This "kids" made excellent fruit cobbler and cookies.

I got my chance to cook too, and as my recipes are new to them, they went well. I enjoyed making a big potato puff, Asian delight, and sweet potato pies -- it took a while as I didn't know where things were.

FRENCH AND THE COUCH

Often Nadine "held court" on the living room couch. When she was feeling really weak, or even not, she'd be on the couch with me. I did some French lessons with her, mostly conversational, which was fun and productive. She'd knit or do jewelry at the same time. Academics haven't been our bright star over the last few months, but we did work on French review for Nadine, using both the book she used and the book Kate used at Swarthmore (thank you Kate), plus tidbits from my own knowledge. She progressed really, really quickly, remembering what she'd learned and going on. I would have been happy to share it with Margaret and Hassler too. Often Hassler would be doing his own studying in the living room along with us.

A WALK
The place is south of Pittsford, almost-country. I remember puffy white clouds set against luminescent blue sky, and although the place was "developed" I could visualize farmfield where there now were green lawns. I took long walks, especially at night, around the long circular roadway, sometimes not noticing I passed the house and doing a double loop back and forth. The sky colors were gorgeous near sunset, with luminescent tones of blue in the sky. Once it got cold, I'd walk out on a starry night enjoying the clarity.

CHAIN MAILLE AND KNITTING AT CLINIC AND ON COUCH

Nadine did a lot of jewelry-making and knitting on that couch including chain maille and seed beads. She also knits beautifully patterned textured scarves. I don't know how she manages to choose color combinations that might look awful to me at first, until she makes them look gorgeous, like the long pink and charcoal scarf, where my "Uggh" turned into "Ahhh". I grimaced at her electric blue chenille until she paired it with black. She took a long tour of Michael's Crafts for yarn with me, carefully selecting black, electric-blue chenille on close-out, brown-ish textured stuff, pink, charcoal, greenish-textured, plus pretty wooden knitting needles.

Nadine invited me to knit with her, which I happily accepted. She had to refresh my memory of how to get the yarn started on the needles. Wasn't I the one who originally taught her to knit?

Nadine often takes craft-making supplies to the clinic, and knits or chain-mailles at during the long chemo or transfusion waits. Nurses and others have wandered in, and people have asked about getting some stuff and placed custom orders with her -- at least one of the staff people said she should add her beautiful knitted scarves to her "line". Janet, the gracious and well-dressed secretary who "womans" the entrance to the clinic, has already ordered and received two pairs of earrings from Nadine.

SEPTEMBER 13th 2009

Nadine played at the Irish Festival (September 13th) at Eastman Park in the north part of Rochester. I didn't think she was going to do it -- she had been feeling pretty bad pretty consistently over the week. But amazingly she perked up and said she was into it -- she came to the "dress rehearsal". I had loved doing it too -- accompanying and enhancing kids (and older musicians too) was and is a blast. It's what I want to keep doing, and doing, and doing. Nadine did a solo piece, as did other soloists. There were about 20 young musicians. I was SO pleased that she was up for it.

In the car, Nadine announced that she suddenly felt happy for no reason at all. This seemed like a nice way to be.

The festival was huge, and we went indoors and "set up" on the stage. All went very well.. Afterwards, Nadine wanted to hang out at the festival -- we sat together in the dirt and watched some spectacular young Irish solo dancers with fancy footwork, curl-curly bouncy-curled hair (or wigs), and elaborate themed costumes. Nadine mentioned that she hadn't been to a festival all summer (we usually go to lots), and she prowled the clothing and crafts section, looking at and trying on skirts. Nadine got a little hand-made silver ring at one booth; I admired one but didn't get it. We sampled the Irish food, with Nadine relishing Irish style potatoes and meat. AFter we left, she encouraged me to go back and get the ring I'd liked, and I did, so we not each have a silver ring to mark a lovely festival day.

SEPTEMBER 14th:

We moved out of the Kanack School -- we'd tried to make it by September 10th but it didn't happen. I was determined to do it all by myself, even though I'd been offered help, but the stuff... the stuff....the stuff...... I was appalled at how much had accumulated over a month. Although I intended to do it all alone and valiantly refused assistance, Alice and Sally ended up helping-out. I was embarrassed, but they were so gracious about it all. They treated my predicament as completely and utterly normal.

Our first night with the Thurstons, we arrived late at night. I confidently pulled into the wrong driveway - someone was outside, and I asked if he was George, which of course he wasn't. Well, at least he didn't call the cops. Then we got to the right house and were soundly welcomed, as late as we were.

WERE WE WERE

Nadine and I shared a room, with side-by-side beds; there was lots of space in the house, including the basement, to do things separately. I think it worked out nicely.

We knew Sally from when she used to visit us in the hospital; she works there as a biostatistician; she also contradances; her husband George is a physicist; both "kids", Hassler (16) and Margaret (13) are delightful. I liked the from-intellectual-to-fanciful conversations at the table, peppered with lots of humor. It's nice exercising the math-logic part of my brain for a change. Hassler is homeschooled and is doing an impressive amount of coursework. Nadine has had excellent times with Hassler and Margaret, musical and otherwise. Since Hassler and Margaret also "fiddle", we all had fun with that


TUESDAY SEPTEMBER 15th

Nadine was very animated, talkative and lively. Her energy level seemed unusually high. Jessie the nurse came and took her blood levels; she said she thought Nadine's counts must be high because she was the opposite of tired. Surprise -- Nadine's counts were very, very low! They were so low that she had to get a transfusion the next day. This didn't make much sense.

After Nadine lost much sleep, It started to look like she was having a reaction to some of her medication. Although she was doing nice stuff like flute practice and writing, she wasn't resting and she wasn't sleeping. She was staying up way too late, even for her normal night-owlishness. What had at first looked like a welcome perking-up was getting unsustainable, even though she was delightful. On Tuesday night she stayed up all night -- I'd get up at night and she'd be up facing me.

SEPTEMBER 16th

Clinic day. Nadine got her two transfusions. I conferred privately with Eric the social worker about how to constructively handle occasional difficulties, differences and disagreements with Nadine's attending doctor or other staff members. With this serious illness, the stakes are very, very high. Often I've felt it necessary to "stand up", and I'm at peace with doing so, uncomfortable as it may be. Eric is a supportive person to talk this over with, including when I'm not sure if an issue is important enough to me to bring it up. I feel totally supported, and he also offers to communicate with the doctors, nurses, or anyone else if I would like him to, which I have happily accepted at times.

I had a difference with our doctor around what issues were "major" enough to get a second medical opinion -- I was very upset. Eventually I was able to talk it over with her; even though we didn't completely agree, I felt empowered to make the decision after the doc explained her view. Talking with Eric helped. Strangely enough, it hasn't come up since, but I don't feel as worried.

MORE AT CLINIC

Dr. Bruckner checked Nadine and told me Nadine's over-energeticness/lack of sleep problem was an issue. A medical issue. Thankfully, no re-hospitalization. And it's improved a lot.

I had my panic away from Nadine. Chemo messes up so much. This whole thing is monstrous, just monstrous. That horrible disease. Those horrible chemicals in my gorgeous girl's body. I'm still appalled.

WEDNESDAY EVENING SEPTEMBER 16th

Nadine wasn't doing well, and we spent time in the basement to avoid disturbing anyone else in the house. I had trouble resting as well. I: went out to the car to get something, and forgot to turn off the security alert -- fortunately someone upstairs heard the whining of the buzzer before the system would automatically dial the police i was pretty embarrassed, and blurted out how upset I was about Nadine. I suppose it was just as well they knew how I felt.

Amazingly, shortly after that one of the Thurstons complimented me for having so much "together" with all the things I had to deal with. Me, well organized?


THURSDAY SEPT 17th

Nadine and I returned to the Southern Tier and got some peace and quiet. On the way down, she admired the beautiful colors in the landscape. Back up on "our" hill, we could walk outside and just admire the surroundings. I also got my first haircut since May, visiting my favorite hairdresser, who works in Olean -- it might sound silly, but I missed having orderly hair, perhaps especially with the disorder and dismay I had experienced over the months. I got it cut nice and short, which was a pleasure, a literal weight off me. I enjoyed running into people I knew in Olean.

Nadine came with me -- she had the camera with her and did much photography, which she loves. I was happy to see her getting back into it. She also got the video camera out, did some composing, and made gifts for some friends.

SEPTEMBER 29th

We returned from the Southern Tier. Nadine was doing really nicely, getting rest, it felt nice.

BACK TO RONALD MacDONALD HOUSE
We were returning from the Southern Tier and the Thurstons informed us that someone in their family was sick and it would be best for us not to return there. SO -- I called Ronald MacDonald House, the wonderful place that had hosted us during Nadine's hospitalization, and they had a place for us. Once a resident, always a member of their commuity, and always welcome back. The parking sticker had never been taken away. They had a room available and it was "home" again! This time the room was on the ground floor and had a guest book where we could write chronicles -- I recognized one of the names from a previous stay there, and enjoyed reading the rest; of course I contributed. There were more wonderful meals, the wonderful kitchen where I could cook and be with the other residents, the piano which I played again. There was the completed, well-nurtured rest for us both. The wonderful people who worked there.

And there was the COOKIE JAR! That fabulous cookie jar that had become my symbol of comfort during the time of Nadine's hospitalization. A cookie in the morning and a cookie at night. The tradition continued.

Nadine had a flute lesson with Sophia Gibbs Kim again that day as well -- she was going to enter the Rochester Flute Association flute competition after all, with the Dutilleux Sonatine.

After that, Jessie the Nurse came to the House around 5PM for Nadine's blood-drawing, dressing change, and check-up. Nadine was hoping for medical paraphernalia for her Journeys performance. The two of them went out to Jessie's small SUV, and looked like a pair of dumpster-divers as they dived head-first into the back of the truck; Nadine "scored" big. Blood-drawing tubes, (needle-less) syringes, gauze, stuff I couldn't identify.

NADINE and the DOUBLE FLUTE CONCERTO for the CONCERTO COMPETITION DEC 17th

Nadine had her first rehearsal with her buddy Victor Wang for the Rochester Philharmonic Youth Orchestra Concerto Competition, right at Ronald MacDonald House!! Victor arrived with his mom, who is a wonderful person too. He is another wonderful flutist who studies in the same "studio" (same teacher) as Nadine. They have competed many times, and this time they decided to enter the Concerto Competition as a pair; they chose the Cimarosa Double Flute Concerto, a classical composition with soaring harmonies and beautiful solos.

With all the health-related delays, it was wonderful that they were able to do this.

The two of them "set up" by the piano in the main gathering area, with the beautiful vaulted ceiling, wonderful windows/glass doors, etc. -- it was viewable from the second floor lounge which was open to it and accessible by stairs. They socialized and then sight-read the piece. It was an unwritten agreement that they'd start out by sightreading. It was gorgeous! Meanwhile I gave Victor's mom a tour of the wonderful house, and sat in a downstairs lounge and visited. Afterwards we stood on the second floor lounge and peeked over the railing to have a bird-eye "mezzanine" type view of the event. I cautiously stuck a camera over and took photos and a video.

It was so nice to see Nadine making music with a friend.

WEDNESDAY SEPTEMBER 30th -- DELAYED CHEMO and BONE MARROW BIOPSY

Nadine got a bone marrow biopsy to check to see if she was still in remission. If she was out of remission, it would be very, very serious. Everyone told me they didn't expect the biopsy to show anything wrong, but obviously the chance of a disaster wasn't zero or they wouldn't have done the biopsy.

The biopsy was done because her "counts" still weren't high enough for the "big" chemo after a week's delay, following the 3-week delay in her last cycle.

Margaret, who did the job, remarked that Nadine has strong bones. I've seen her digging in there trying to get a specimen. She uses something that looks like it might be a tiny saw. I watched the procedure as usual, standing in the room. I really like one of the anesthesiolists, Elise Vander Haght (a Dutch man), who also has been a flutist.

Dr. Andrea Hinkle, the statuesque and lovely dark-haired doctor who cared for Nadine in her brief stay in the ICU in July, also presided over one of the procedures. I'm grateful for her having successfully handled Nadine's stay in the ICU.

BIOPSY RESULT SHOWS NO PROBLEM (EXCELLENT)

Nadine's biopsy results came back later than I'd hoped, but with the best news -- they showed no evidence that Nadine was out of remission!

POOPY BONE MARROW, DELAYED CHEMO, AND REDUCED CHEMO DOSES

That's Margaret's term for unexplained delays in counts rebounding enough for the next chemo round. It sort of says it -- the bone marrow gets tired from repeatedly pumping out cells after the chemo repeatedly knocks them down. Perha[s it's more prevalent during the later parts of the "consolidation" phase of chemo that Nadine is in, which ideally lasts about 6 months after her remission started, in this case late June.

Delayed chemo means delayed treatment of cancer, and this is awful to think about. I've worried that this could mean she wouldn't get enough, or frequent enough, treatment to eradicate the cancer. The doc has reassured me that delays happen a lot (perhaps even the rule). She is expected to get her FULL dose of doxorubicin etc., only spread out over a longer period of time.

My impulse, of course, was to ask the doc why she didn't just "get on with" the chemo, even if her blood counts are los. The answer is that it's too dangerous.

Even if they're right (which they probably are) it still makes me achingly angry.

MERCAPTOPURINE REDUCTIONS, DOCTOR MIX-UPS AND WOES

Nadine takes 6-mercaptopurine pills orally during the first 14 days of each chemo cycle. She stops them early if her ANC reading is too low to keep it up. If her counts are way-way down too many cycles, or if there are too many delayed cycles, the daily dose of 6-mercaptopurine can be reduced as well. 6-mercaptopurine is not one of the "super-aggressive" cell-killers like doxorubicin and vincristine. It interferes with purine, one of the nucleic acids in DNA, presumably hitting leukemia cell harder than other cells because leukemia cells reproduce more frequently.

I recently read that although doxorubicin is not usually damaging to the liver, the combined use of 6-mercaptopurine with doxorubicin is a threat.

I had an unpleasant mix-up with the doctors in August the first time her mercaptopurine was supposed to be stopped. In the hospital, Dr. Asselin (the senior oncologist on duty), told me that no matter how low Nadine's blood counts went, the dose should not be reduced or dropped. after Nadine left the hospital, her labs showed a very low ANC and Margaret said to stop the mercaptopurine. After I hung up the phone, I thought, Oh no, she must have gotten it wrong, as I remembered Dr. Asselin's emphatic statement. Of course, by the time I called back, the clinic was closed. It took an agonizing evening to attempt to straighten it out, including an honest miscommunication with the on-call doctor that ended with Nadine getting the 6-mercaptopurine in error. A long and uncomfortable discussion with Dr. Bruckner and Margaret ensued the next day -- they were pretty unhappy and so was I. I felt bad; so did the others involved in this mess.

If communication is a key -- the keys were lost.

I hadn't known (and no one had thought to mention to me) that the parameters for stopping mercaptopurine are different during the outpatient (or consolidation) phase than in the hospital (or induction) phase. When Nadine was hospitalized, she was undergoing a more intensive phase than she had as an outpatient -- and more dangerous things were happening there. In other words, Margaret was right, although she didn't realize I knew the hospital protocol and thought it applied as an outpatient. It would also have helped if I'd noticed the discrepancy between Dr. Asselin's and Margaret's statements earlier. A mess.

OCTOBER 6th COUNTS STILL LOW

Jessie drew Nadine's blood test -- they STILL weren't high enough after 5 weeks minus 1 day. Oh dear. This was supposed to be the BIG-BIG Chemo, the one with the injections into the spinal fluid as well as the usual "stuff". Two cycles delayed in a row.

Kristin the physical therapist was also coming often -- some of the exercises used stretchy straps. They looked helpful, and Nadine seemed to think they were helpful, but she didn't do them often at home. I guess Nadine walked up stairs, and danced sometimes.

OCTOBER 7th: SURPRISE COUNTS UP -- RETURN of the BIG CHEMO (YAY!)!

Nadine's counts stormed up "at the last minute" -- her blood was re-tested on Wednesday morning and there it was.

So -- She got the Big-Big Chemo. The one that's normally every 9 weeks. An icky procedure for sure, anesthesia, the injection into the spinal fluid, the asparaginase, the doxorubicin and vincristine and dex-(something to protect the heart), the works. And the asparaginase too. Plus possibly some Zophram for nausea "just in case".

During the procedures Nadine looked and sounded like she was having so much fun. Oohs and ahhs. It's fun to watch her.

Afterwards -- hunger, immediate hunger. Enough to send Mom scurrying.

She did feel miserable after the chemo. I think she'd felt fine first, just fine, and then, misery.

I had to miss my theory class, she felt so bad. I felt cranky and upset because I really, really, had been enjoying my theory class with Margaret Henry -- it meant a lot for me to be "caught up" again, and I found it so helpful and useful to me. I even drove over to Eastman, just to see if she'd feel better, but she didn't. But Nadine said she really wanted me to stay with her and just take her home.

Of course Nadine deserved it, and of course I took her home. It was a loss, though.

THURSDAY OCTOBER 8th-- NADINE SICK, STILL PLAYS HALF A DANCE WITH TIM AND JANE;

Erek was arriving that night. Nadine was feeling miserable for most of the day -- really bad. Lying on the couch, just miserable. That night, however, Tim Ball and Jane Knoeck were performing for the Rochester dance, and Nadine was invited. She had performed several times with them -- Tim is an amazing fiddler, a recent Ithaca College graduate and the two have a vast and wonderful musical rapport. Jane is a wonderful keyboardist, accordionist and all-around marvelous person, who also takes a tremendous interest in Nadine.

She was so miserable, and she also was so insistent on going to the dance with her flute. I finally decided that it would be more stressful or her to stress about not being at the event than to bring her there, so off we drove. As she sat, sick, beside me, I was thinking "why am I doing this" as I drove into the night.

We arrived at the dance and there were Tim and Jane on stage, there was lovely Sarah Van Norstrand the caller, and Nadine amazingly perked up and played beautifully with both of them, even though she looked dreadful, pale and drawn. It was a strange discrepancy of looks and sound, made perhaps more eerie by the small pink "spit dish" set right next to her, and judiciously used, on the stage. I in turn loved watching them and dancing to the wonderful music, which I did with relish. I sometimes feel I don't get asked to dance enough -- this time I was getting asked a lot and thoroughly loved it.

After halftime, I still felt Nadine should stop, just to make sure she stayed okay, and she acted appreciative of my doing that, even though I had mixed feelings about my decision.

GETTING EREK; DECISIONS

I had to get Erek at the airport at around 10:30 PM. If Nadine had been in better shape I probably would have left Nadine there as our friend Ron had offered to take her home. I thought I should have told Erek the day before that I might be late; then I could have stayed with her. At any rate, Nadine said she thought she might have been ready to collapse anyway. It turned out the plane was late (I'd called earlier and it was supposed to be on time). So we sat at the cell phone lot for about an hour waiting and trying to rest up. We could have stayed at the dance.

So many decisions I have to make, big and small; so often I don't know if the decision is right, either immediately or later; sometimes it's just hard to think straight. I know I know, hindsight is 20:20, but I'd like to do at least a little better at getting it right "on the fly".

We finally collected Erek, and brought him home. What a treat to have him back!

OCTOBER 9th -- NADINE AND BUDDIES COOK

I had planned on cooking dinner after doing "exciting" (not!) errands at Target and worse.

When I arrived in the kitchen, Erek, Hassler, Margaret, and Nadine were all in there cooking dinner, having a fabulous time. They were so much fun to watch. I was given no indication whatsoever that I was welcome anywhere near there, so I stayed out. The prepared a fablous meal for us all. Sally also commented on seeing all of them in the kitchen together. They looked so gleeful, and Nadine looked so perked up. Camaraderie certainly perks up Nadine, even though she was generally at low energy around then.

EREK'S VISIT

Erek visited us at the Thurston household from Thursday October 8th through Tuesday October 13th. Usually he is here Thursday through Monday, but we got an extra day courtesy of Columbus Day. He fit right in with the family, chatting with Hassler some, and also of course visitng us. I was sorry George was in Europe giving a presentation, as I was sure he and Erek would enjoy each other. I took a long walk with him on the long road-circle. I remember Erek and Nadine visiting together, Erek dragging Nadine out for a walk (he does better than I do), Erek spending much time cuddled with her on the couch (she needed a lot of couch time) -- often Nadine would be leaning on him or next to him for long periods of time. He was so "there" for her. I made sure to give them their space. She'd had that big-big-chemo.

SUNDAY OCTOBER 11TH --
Erek and I had three hours free while Nadine was at her orchestra rehearsal. We drove to the South Wedge with a mutual desire for hamburgers one would think hamburgers on a Rochester Sunday after are easy to come by by so we settled for "subs" -- mine was awful, but we still sat together and had fun.

Then -- off the beach! We drove up to a park-ish area in Seabreeze right against the lake. It was cold and windy, but okay by us --we strode off down the very windy rock jetty right out into the lake, standing in the wind with the choppy water splashing against rock. Then we took a long and satisfying walk along the sandy beach right by the water. Walking back there was a beautiful flock of seagulls soft-reflected against the sky as they walked or stood on the glossy reflective water-coated surface of the sand as the waves brought in water and then pulled it back. I needed this.

MONDAY OCTOBER 12th-- A NIGHT OUT AT THE LITTLE THEATER CAFE

On Oct 23th Nadine, Erek, Rafi, me, and Diana went to the Little Theater Cafe. Nadine was pleasantly animated. We saw a nice rock band, got tomato bisque and chili, and played some nice card games on the table. Erek, Nadine and I got there first and had a nice card game. After Diana and Rafi arrived, Rafi joined Erek and Nadine and Diana and I took a neighboring table. Diana had to leave; I offered to take Rafi home and joined them all for a while. After I took Rafi home, I returned to the cafe in time to play a "friendly game of Hearts" with all its conniving and gleefully dumping the queen of spades on one's hapless comrades. It was so much fun to play it again together. The game was "popularized" with our family by Barry when Erek was maybe 3 years old, and has been popular since.

Nadine decided the cafe might be a nice place to go with just me too. I'd like to do it.

TUESDAY OCTOBER 13th

It was the day Erek left. Erek and I dropped off Nadine at the Teens Living With Cancer meeting that night, which was a rehearsal for the Journeys program, which I plan to write about separately.

I picked up the flyers from Ralph and Judy Hunt for the wonderful benefit that Crowfoot, a special musical group, was doing for Nadine on her birthday at Harmony House. Ralph and Judy had been amazing in offering to do all of the benefit organizing for Nadine. This included getting the venue, publicizing the event, getting the sound stuff, the works. They run the Heartland folk concert series, bringing in amazing folk/traditional/creative artists. They invited me to stay for dinner, but there was something else I was concerned about -- I'm sorry now that I didn't stay. They're wonderful people who always invite someone to dinner. Ralph sent me back with a wonderful loaf of his home-baked bread.

Heartland is HEARTland. in its glory.

I went to my first Golden Links group singing/song swap meeting that night-- Ralph had suggested it that very night. Although at first, after getting lost on the way, I walked in and thought, oh boy, this will be boring, I sat down on a bench near Ralph and just enjoyed the listening. Some of the tunes were so moving, and I was treated to a version of Autumn Leaves, a favorite "standard" and one of my super-favorites, with a wonderful guitar accompaniment, sung and played by a gentle-looking bearded man who also was doing drawing during the evening. The rendition could make me cry (I think I did cry, in fact). And people sang Somos El Barco/We Are The Boat, another gnetle favorite with which I could sing along. I stayed until it was time to get Nadine before I quietly left. It was a little "just-for-me" time that I'm glad to have had.

FOOD FOOD FOOD

Nadine gets suddenly hungry. She wants to eat NOW and if she doesn't eat NOW, then she can lose her appetite and not eat at all! Not eating is dangerous as she is still so thin that it feels like just a little thinner might hospitalize her -- and indeed it might.

She still goes through phases in what she loves. Then, she was going through a desire for Indian food. I took her to the Indian grocery where you can get a two-for-one at their wonderful lunch buffet if you buy $25 worth of food at their grocery store, not hard to do as it contains both staples and exotic products (at least to us). Nadine wanted the mango juice and lots of boxed heat-up meals that could be used either at the hospital or at home if she was seriously, urgently hungry, which happens a lot. She was lively enough scouring the shelves.

We went to the lunch buffet, arranging to arrive right as it opened so Nadine wouldn't have to worry about others having contaminated the food. It isn't very crowded anyway, but we made it first and there was the usual excellent buffet of very healthy out food. I love sitting with her and enjoying her company during meals. Nadine selected some wonderful choices :(I pigged out), and very shortly had eaten enough -- she can just have "so much" at a time. Although usually it's not allowed to take food from the buffet, Adam the waiter encouraged her to choose food and take it home, knowing that she couldn't eat much at a sitting and that it might be very helpful for her later.

ANOTHER WALK

October ? - Nadine was resting. I took a wonderful long walk with 13-year-old Margaret Thurston, up and across East Street and into a group of houses, and trees sporting wonderfully colored leaves. I like to stop frequently and admire the view, and take pictures. On the way home, we arrived at a pond (near their house) that I didn't know was there, and I spotted a great blue heron very very still, looking like a big log from the distance. I tried not to slip on the muddy path. We were gone about 2 hours, and weren't missed.

WEDNESDAY OCT 14th

Nadine got her weekly asparaginase injection into her leg at the clinic, and the usual hour wait to make sure the leg didn't react. She had been really cold lately; she found two of three gorgeous hand-knit hats in the hat bin which , unlike many, definitely weren't sized for a 12-year-old. She happily modeled and selected 3 nice ones.

That night she got "mega-spits", the worst I've seen her. It got way out of hand. Dr. Bruckner had discountued the scopalamine patches about 3 weeks earlier, and the spit hadn't returned. However, it came back with a vengeance.

That night she couldn't get to sleep because of the copious spit; she tossed and stayed in bed about two hours, then got up. She tried spitting into a towel in bed, and even holding the towel between her teeth, with no relief. At 3AM I sent off an email to Dr. Bruckner about it urging her to consider reinstating the skin patch to get rid of the spit. After that I tried to rest in bed, I didn't get much; I still don't know if she slept.

THURSDAY OCT 15th: I WORK ON USING GENTLE PERSUASION AND DR. CHANGES MEDICAL DECISION.-- SUCCESS!

Nadine was miserable again on Thurs Oct 15th, tossing and crying on the couch, the spit was so bad she couldnt' play her flute, and she was exhausted and miserable and unable to do her music.

I emailed the doc to ask her to reinstate the transderm patch that had worked so well before; She wrote back that she opposed it because she was worried about extra meds. I wrote back that I was uncomfortable with that decision, as Nadine's misery was impacting her so seriously, and this too could affect not only her quality of life (important enough) but also her physical health I also did some research and shared it, and went over a "timeline" to indicate that when she'd used the med before, there was evidence of no ill effect. The doc changed her mind and wrote the prescription.

Nadine used the patch and, voila, the spit disappeared! And there were no noticeable ill effects. Victory!

Nadine did start a policy that when it's time to change the patch (after 3 days), she leaves it off until or unless the spit returns. She's had substantial periods when she doesn't need to use it, but it's there when she does.

OCT 15th: NADINE MISSES PLAYING A DANCE

The same day, Nadine was feeling so sick that even she said she wasn't going to play the Rochester dance with Tunescape. She must have felt really terrible. Even I tried to persuade her to go, but she was adamant, and she had my respect. She lay curled up and dejected on the couch.

The kids we're staying with (and mom too) could see the sadness and frustration of it all. I may have mentioned to the kids that this is a "homeschooling" lesson in itself, liviong with a sick friend, seeing the awful and the okay and even the humorous, just learning what that world is like. They all were 100% wonderful. One night I shared with Sally how frustrating this all was.

As Nadine wasn't going to the dance, and Bob Fabinski offered to bring the flyers Ralph and Judy had made for Nadine's benefit concert; I went and dropped them off at his house in Brighton. I knew Bob as a bouncy dancer who generally wears tie-dyes and is VERY welcoming to all including newcomers, whom he bounds up to, welcomes, and asks to dance. He and his wife have two small children. When I arrived, I learned that he is just as welcoming to visitors, or at least to my visit. AND that he's an excellent cook. He'd prepared a plate of delicious food including an amazing pumpkin soup and some serious cookery that might have been Indian inspired, and sat me down at the table -- he'd eaten with the kids-- and joined me for nice conversation.

I returned with a pleasantly full tummy and upbeat attitude, which was excellent to bring to the evening of caring for Nadine.

ESCAPE TO A HOMESCHOOLERS MEETING

That week, I escaped to the Kanack School for the RAHA homeschoolers' meeting. The connections mean a huge amount ot me. I need to keep my contact with my "regular" world which includes homeschooling and of music, where topics range to normal things, where I remember that cancer-care isn't the only focus of my life.

I'm aware of a "life swing" of communities after Nadine was diagnosed -- first staying within my "normal communities" and feeling I had so much support there that I didn't need to become close to the "illness" or "teens-with-cancer" communities. Then, after Nadine left the hospital, I realized I needed the illness-support community as well, and being with them plus day=to-day caring for Nadine were taking over so much that I'd backed off from my "home" community. Now the two were becoming more balanced in my life -- I needed both, and wanted to contribute to both, even if realistically there would be some swings in how much I related to one or the other.

ws a get-to-know-each-other session, lots of lovely ladies, a few guys, kids of all ages. I sat next to Diana, and also ran into Marcia Weinert, another mom of older kids, who is a theater director and producer to whom I'd shown my draft of the operetta I was working on. I miss doing that and still want to complete it. We talked about hospital advocacy -- she has a friend who she advocated for. Alice
Kanack was there, looking worn and drawn -- she was coughing and looked sick. I: wanted to sit near her but pulled away as I have to be careful too.

I went up to my "old" bedroom there to look for glamourous stuff like missing income-tax papers, which I didn't find.

I feel like my things and routines have been scattered royally in this new regimen of sick-care and constant moving around from residence to residence and place to place. I would love to be settled in our own long-term place, even while I'm immensely and intensely grateful for all the hospitality we have received. I long for my own room that I can decorate, for Nadine to have her own room that she can decorate and paint the walls a wild color in, for the photographs on the refrigerator to be photos of our own family rather than the people who really live there, even if they're people we truly like.

FRIDAY OCTOBER 16th

Journal -- I haven’t been writing for quite a while -- sometimes because things have been so awful it’s been hard to write, sometimes because things have been better and I’ve done other things; sometimes inertia, sometimes feeling the endless-seeming back-and-forth swinging feels repetitive in writing, even if not at all repetitive in “real life” mode. . At any rate, here I am again, waiting in the transfusion room at the clinic while Nadine receives 2 more units of red blood cells.

That time of the cycle -- she got her chemo on October 7th. Day 9, her counts dropped a bit early.

Ah, transfusions. Again and again.

Nadine had a "dress rehearsal" for "Journeys" some time that week. I took her to the site, and got to see girls squiggling around, tech people getting things right or not, the big and fancy hall, with tables for the dinner, and tables being set up for the donated silent auction items. I remembered about Nadine's chain maille donation, and made a note to get it ready for the night of the event, which was Saturday October 17th. A big, big night.


THE LAKE AND THE BLUE HOUSE

Around late August or early September, Nadine and I took a nice drive along the beach road eastward on the way from west-of-Greece to dinner at the Klassen house. She was bouncing like a happy kid, especially when we arrived in Charlotte, where we gleefully looked at the houses on Beach Street parallel to the lake, saw the lake itself, and stopped at the beach. Nadine announced that she loved the air near there, and were both very happy. We found a rocky area across from the lake by an inlet, and sat down together, enjoying the weather. Nadine needed to cover herself up in the sun.

Nadine announced that she'd love to live there, and that she'd even consider a small place like that when she was a young adult.

A few days later, I saw an ad for a two-bedroom house in Charlotte a block from the beach, and it was affordable -- we made an appointment right away. It was an adorable little picture-postcard two-story brick house, with a surprisingly spacious neat fenced yard. The block was just plain sweet and old-fashioned looking like something out of Dick and Jane. Inside, there was a blue-carpeted little living room (we named the place the Blue House); the rest of the floors were wooden. There was a dining room, a kitchen with a too-small oven and fridge, and upstairs therewere two sweet bedrooms with dormers. Nadine exclaimed that she'd love to paint her bedroom walls a bright color; the agent said he could help her. The agent had just started his job and obviously liked us, even though we were honest that we didn't know how long we'd stay.

About three weeks later, having heard nothing, we drove by the house again and parked. Nadine sat on the front steps, as if she lived there. I talked to the mailman and he said it was a wonderful block. He thought Nadine was a lot younger than she is. Next, we visited Abbott's Ice Cream nearby close to the beach, and took our ice cream cones on a stroll to Ontario Beach Park, where we sat together on the steps facing Lake Ontario. I walked on the sand by the water, able to dip my hands and feet in.

Driving back through Charlotte, we stopped at a yard sale. She fell in love with a butter dish with a large brown and white ceramic cow for the top. I thought it was tacky, but for 3 dollars I got it for her. Afterwards I decided I liked it too. Sadly, it broke as Nadine was carrying it in the door. I miss it....

A PLACE TO STAY DURING THE WINTER

The apartment I'd thought we were getting on October 1st had fallen through. I was again going back to One of our wonderful homeschoolers put me in touch with a woman who was leaving for much of the winter for health reasons and was hoping for someone to watch and be in her house from October 25th through March 7th. Much as I wanted a place of our own, this was a wonderful gift. The centrall location would be a gift too -- betwen Wegman's and Abundance Co-Op near Nadine's beloved store Archimage, 10 minutes from Eastman, 15 minutes from the hospital, a wonderful neighborthood for taking long walks. The place is older and beautiful; coincidentally the bedroom has the same printed comforter that I have.
The people living there are kind, and offered for us to stay there. I figured that I could commute from the Southern Tier if needed, but the Thurstons insisted that we stay with them until we got the place on the 25th. Sally reasoned that she had hardly seen us anyway, as we'd been away so much.

I'm befuddled and overjoyed with all the kindness and love we've received. In so many places, with so many people, in so many ways.