DEC-JAN-- NO BLOOD FROM PORT, DINNERS AND BAKING BREAD, NEW YEARS EVE, JANUARY

NO BLOOD FROM NADINE'S PORT, UH-OH. TESTS DELAYED.

Jessie accessed Nadine's port as usual for her blood test. NOTHING CAME OUT. Absolutely nothing. Nadine got into amazing contortions to try to get it working, but nothing! It could have been a clot, but Jessie assured me it wasn't the serious kind, just something right around the tip of the access point that had to be cleaned out at the hospital, something called a TPA (concentrated heparin-like stuff). Nadine was given a choice -- she could have Jessie do a "regular" blood test through her peripheral vein in the arm, and then go to clinic at her normal 1PM appointment time to have the job done while waiting for usual hour after her asparinase injection (which was always done to make sure she didn't have an allergic reaction to it). OR she could avoid the extra poke and have her blood test the next day, but would have have to come in to clinic three hours early, to get the blood test done before the asparaginase. I thought it was a no-brainer -- just get the blood test over with at home -- but Nadine didn't want any more poking in her veins. So much for any free time on Wednesday -- I'd planned to prepare a nice meal for our friends the Pryntz-Nadwornies and also get the house cleaned.

Selfish thoughts? Absolutely! Was Nadine right to exercise her right of choice about her own body? Absolutely! Did I have a right to gripe? Questionable. Did I gripe anyway? Absolutely.

That night I tried to go to bed early ahead of the early clinic the next morning, and of course "early" turned into much later than I'd wanted it to be.

NADINE ACHING -- AWFUL REACTION TO THE BIG-BIG CHEMO AFTER ALL
Nadine had been getting achy, really achy from the chemo, perhaps worse than in a long, long time. And the spit started to return. I'm wondering if the spit is cyclical -- I should check. So sad that she was hurting, really hurting.

WEDNESDAY DEC 30th -- LOST KEYS, COUNTS DOWN, EARLY NEUTROPENIA, NO PORT PROBLEM.

On Wednesday morning all was going well, pre-cooking dinner, on time for clinic -- and then my car and house keys disappeared. I mean, they just vanished. I felt guilty as I hadn't wanted to take Nadine in to clinic early anyway. I slogged through the snow twice to ransack the car -- no keys. I checked pockets of everything I thought I could have worn -- no keys. I finally had to call clinic and they were pretty nice about it. I was wondering what friend I'd have to call for a ride, but finally looked once more in the pocket of the pants I'd already searched once, and there were the keys.

WEIGHT GAIN -- Confirmed! Four pounds up on the hospital scale!

PORT JUST FINE -- Nadine was installed in the treatment room, the nurse stood ready to de-clot the port with the super-heparin, and she checked Nadine's port once more. The port worked perfectly!!! Oh well. Blood was drawn.

UH-OH, VERY EARLY NEUTROPENIA, ANC OF 100 to 300 AFTER ONE WEEK

This was a surprise! Nadine's counts had plummeted for the cycle. No more mercaptopurine for her, and it was only Day 8. Her hematocrit was still 28, and her platelets were at 80, down but not critical. Margaret said there was no reason to check blood agian Friday although I was concerned -- she thought Nadine probably wouldn't need a trasnfusion, and clinic was closed anyway. AFter that, Nadine got her asparaginase, and after an hour (about 2:30) she was out.

We finally finished watching Mary Poppins, which really was delightful. The fun stuff, the run on the bank, the laughing men on the ceiling, Dick Van Dyke, and so on. Nadine smiled and smiled. I like watching her as much as I like watching the show. Afterwards, I pranced around the house singing "A spoonful of sugar makes the medicine go down" -- what can I say?

VISIT TO OTHER TLC GIRL
Nadine wanted to visit the very sick TLC girl upstairs, even though she would need a mask. Even though the TLC teens weren't encouraged to go up there, because she would be looking really bad. Margaret had a talk with Nadine first at clinic, both about the situation and about the fact that Nadine has a different kind of cancer. Nadine really was up for going, and Margaret supported her in doing just that. She also called to make sure it was okay with the family. We went, and it was, indeed, right to be up there. It seemed like everyone on the floor knew Nadine was coming up -- they were all warm. I decided that Nadine should go in alone, and waited in the rec room; after that, the girl's mother came out into the rec room and I held her. After that, I went in and visited as well. We left after that. Not much to say.

HOME DINNERS, FRIENDS AND TIREDNESS

I had a food shop to do and got back around 5 PM; Brian, Diana and the rest of their family were coming at 6. IThere were dirty dishes in the sink, and there was clutter in the living room that I should have taken downstairs a long time earlier. I looked amess too -- my hair was dirty and I was the opposite of "dressed for success". At least I got dinner into the oven.,

They came, cheery as ever -- wonderful 14-year-old Doriel assured me that he didn't care at all about the mess and just was glad to see me. Diaina marched right into the kitchen; the kids all went off to Nadine's messy room, then established themselves in the living room with a rowdy game of "set". Diana chopped zucchini while I washed dishes.

I felt close to falling asleep even at the merry dinner table. I realized how tired and depressed I was, and it was hard to be cheery even with loving friends there. I've felt like a "sad sack", with so much going wrong, and again I didn't want to burden my friends with my issues, although I was truthful at least with Diana. At the table, Diana and Brian caught me up on their lives and I was happy to hear what was going on with them -- other people's stories matter a lot to me. Diana was ready to leave early, and they all went. Later, Diana said she'd been feeling drained that night and didn't feel like much of a guest. I didn't feel like much of a hostess either. So I guess we were in parallel places.

It still was worthwhile to have them -- I LOVE having people over!!

NEW YEAR'S EVE
Even at an APC of 100 to 300, Nadine insisted on playing the New Year's Eve dance at Rochester, and I realized I'd just have to deal with it. She could take precautions, and avoid dancing with people and stay on the stage, but she was going to play for that dance.

As for me, I went to the New Years's Eve party at Alice's parents' house -- I was SO glad she'd invited me. It was an icy road, and I lamented not having on my snow tires yet, sigh. Still I braved it, avoiding the freeway. It was a wonderful family-atmosphere, with old-fashioned decorations, and gobs of people, and nice food, and a nice talk with Diane and Alice and others. I got treated to teens fiddling and to an informal and very lively reading of a Bach Brandenburg concerto, and watching older people and teeny kids bustling around, and a comfy house. Even I sat down and did some music in my own style at the piano. I thought of leaving for the dance and surprising Nadine before midnight, but got talked into staying (happily). I was chatting with Alice when suddenly the New Years countdown started, and we rushed into the party room, where the Times Square event was being shown, and at New Years there was celebration and fun. I left and the driveway was so icy that we walked on the snowy lawn to avoid falling. I had missed seeing Nadine, but she had fun and so did I. Later she told me the dance was "ordinary" .

In the morning, there was Sylvia on the couch. I had to get her up on time to get her to her parents' place.

JANUARY!!!!

Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.

JANUARY 2nd; NADINE FEELING LOUSY, AND SUPPORT FOR MY ISSUES IN CLINIC

Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor, Dr. Casey, from Sloan Kettering. She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up and I got the sense she was outspoken. What a "breath of fresh air". I looked forward to meeting her.

I have to admit, that some of the clinic policies seem more time-for-the-medics friendly than patient-and-family-friendly, and the clinic hours are a case in point -- closing early on Friday each week-end. The Emergency Room is so unsafe to be in, and so cumbersome, even when they get someone right in like they do with her, that I'm reluctant to bring her. It just isn't right, and having someone else give voice to this has been VERY helpful!!!! It often seems like a clique over there. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it in practice, especially when it involves the institution itself.

Anyhow, Dr. Casey made the call to the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.

CONTROVERSY OVER BEDTIME --

Okay, I felt it was important for Nadine to get to bed at a reasonable hour -- which was maybe 1AM but I didn't want it to be 2 or 3AM, with the way she was feeling. From how late NAdine staye din bed Sunday, it was probably the right thing to do, even though I got a bit of resistance.

CREATING BREADS FOR GIFTS

I baked a lot of bread in mini-loaf pans that I got at Cooks' World, and was creating many breads for gifts for people -- for parents, for the neighbors, etc. -- I would take them around. It was lovely to do this. I feel so much gratefulness for people around me.

JANUARY 4th
There was a parents' meeting at TLC.

TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm at Lauren's house, I have a feeling of peace.

In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.

Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.

JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)

On Wednesday January 6th, Nadine's counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.

I found out that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh.

Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Craig Mullen (youth orchestra parent and also head of the pediatric oncology department). This time he talked about having been convinced to join the medical center orchestra.

THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it.

I CONTRA DANCED WITHOUT NADINE

I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to pracice and still get to the dance. I also called Bob Fabinski, and let him know teens were coming -- there had been a sour man at the door the last time they'd come. He said he'd make a call.

I went !!! As soon as I arrived, I knew it was the right thing.

There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski. That was a great way to handle the problem -- non-confrontational, and just delightful!

I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Betty was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.

I stayed for the whole dance, and came home very, very happy. I needed that!

NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR

Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.

JANUARY 9th -- NADINE HAS FRIENDS OVER

Finally, Nadine's friends Rafi and Kara got to visit over here for a day. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing, cooking, the works. Kara met Nadine at the English Composition class at MCC, and have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice food and the company for her. Rafi has been a friend for years, and was fun to have.

JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.

MOM FEELS SICK

I felt sick, and I was tired, exhausted really, trouble getting rest at night, trouble feeling okay during the day, then ended up with a sore throat, mucous, oh my, awful. And it meant I felt it was important to stay away from Nadine, use even more sanitizing, and so on and on. Oh well, it can happen too.

I took a rest in the middle of the day on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, miserable, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was too weak to pick up in the house, too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine, and was stuck in bed a lot.

On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine to take the risk, so she stayed home and did a lot of practicing here, which was very, very nice.

And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice....