Baking, baking...
I felt so grateful for so many things that I went into a happy frenzy of baking miniature gift loaves of bread -- for friends, for the neighbors, for the hospital staff, for TLC people, for various others. It felt so peaceful to do that. I have a feeling I'll be doing some more....Rolling dough, slathering it with thick gooey globs of cinnamon, sugar (organic) mixture, rolling it into a neat package, watching it rise outside and then inside the oven, the odor fragrant-izing the kitchen.
Barry came for the week-end again and stayed through Tuesday or Wednesday. We didn't do too muchn but it was relaxing being here.
JANUARY 2nd; NADINE FEELING LOUSY, AND MY DISPLEASURE AT CLINIC HOURS
Nadine was feeling so miserable that it looked like she'd need a transfusion earlier than usual. I called the on-call doctor on Friday , and got a new doctor who'd just joined the staff. . She seems like a "moer and shaker" and not afraid to talk about hospital or clinic problems. I mentioned my concern about not wanting to bring Nadine to the ER just for a transfusion, and she actually validated it. She said she felt it wasn't right that the clinic was open at such limited hours, and that at least there should be a transfusion clinic on Saturdays so people didn't have to go to the Emergency Room during the week-ends if they need a transfusion or another visit. I felt the same way and we talked a bit -- she felt it was really important for a parent to speak up. What a "breath of fresh air".
To me, some clinic policies seem more time-for-the-medics than patient-and-family-oriented, and the sparse clinic hours, plus having to take them to the ER other times are the worst case in point -- very limited hours, then closing early on Friday each week-end -- and cancer patients have so many time they have to come in. The "kids" have to go to the emergency room if they need any visit after 4:30PM, Friday afternoon, or on the week-end. It's unsafe, and the waits are huge even if they are taken to their "own" room -- it also displaces other "standard" emergency patients who then have to wait longer. Having someone else give voice to this was very helpful t often seems like a clique at the hospital and clinic. In spite of the signs on the walls that people are encouraged to share things that bother them, I don't feel I have much support for it, especially when it involves the institution itself.
Anyhow, the doc called the visiting nurse people, and on Saturday Jessie came to check a wilted-looking Nadine. Of course, the levels were okay -- no transfusion needed yet -- but it had been definitely worth checking.
JANUARY 4th
There was a parents' meeting at TLC. More at another time.
TUESDAY JANUARY 5th -- A VISIT TO A FRIEND, AND NADINE READY FOR TRANSFUSION AGAIN.
Nadine was going to TLC, and I had chores planned, and realized I hadn't been isolating myself. I didn't have my phone, and on an impulse drove to Lauren Sample's house and rang her bell. She was home and seemed very happy to see me -- she invited me in, and said she'd even cooked a bunch of extra soup. We visited in her kitchen and then at the table, just ladies together, moms, and I loved listening to her, the things going on with her, and we had a joyful yet "deep" time together. Nora got up in the middle, 9-year-old Nora who is still an infant and who is so much loved, cuddled on Lauren's lap. Lauren is a gentle, lovely, loving woman whom I am honored to have as a friend. I'm so glad I took the step of going over there. Whenever I'm with Lauren, I have a feeling of peace.
IN PRAISE OF SPONTANEOUS VISITS
In these days of computers and telephones and emails, we appointment ourselves out of spontaneity and miss so much of the essence of friendship, of human interaction.
Oh yes, Jessie came and checked Nadine, and this time Nadine was ready for a transfusion for the next day. No surprise there. I think she's had one EVERY cycle at about the 2-week point.
JANUARY 6th -- NADINE'S COUNTS STILL LOW (Ugh)
On Wednesday January 6th, Nadine's came in for her transfusion. counts were STILL sitting at 100 -- I had hoped they'd rise soon, and that she'd have her chemo on time again, but no, they sat at 100 at the 2-week point. The lowest dip.
I learned that blood counts are targeted to dip to maybe 450 per cycle -- Nadine's did dip unusually low. Ugh. I hadn't realize this was unusual, although she wasn't the only one.
Clinic ran really late, with her transfusion -- we didn't get out until after 5PM. Margaret came and talked with us. Nadine worked on jewelry again. Eric Iglewski came in an visited. So did Dr. Craig Mullen (youth orchestra parent and also head of the pediatric oncology department).
THURSDAY JAN 7th
I stayed home with Nadine for most of the day. Her NAC was low. Nadine's wound, which was finally pretty much healed, was flaking, and I chedked about lotion for it. Eucerin or other gooey lotion for the flaking. Mederma for scars.
I CONTRA DANCE WITHOUT NADINE AT HER URGING
I wanted so much to go out and dance, and Nadine, whose counts were too low, urged me to go for it. Other homeschooelrs were going too. I said I needed to practice the Prokofiev. Wonderful Nadine cooked dinner for me so I'd have time to practice and still get to the dance. I went !!! As soon as I arrived, I knew it was the right thing.
There was a "Welcoming Committee" downstairs -- I arrived and Rich and Peggy Dempsey bounded out to Welcome. So did Bob Fabinski.
I got in there, and there were Tom Hodgson and Eileen Nicholson playing, with David Smukler doing very happy calling, and there were cheery dancers. Surprise! My friend Betty Wayman was at the dance with Claire, and she'd brought Nathan, Sylvia's tall older brother who was still home from college. What a surprise! And there was a contingent of RAHA teens happily hopping around. I got to dance just about every dance, took pictures of the dancers, and enjoyed everything. Nathan asked me to dance square with him -- he does competition square dancing in college, and was much fun.
I stayed for the whole dance, and came home very, very happy. I needed that!
NADINE'S COLLEGE APPLICATION DECISION -- NO APPLICATION THIS YEAR
Nadine finally decided against applying to college this year. A lot of reasons -- stress, the fact that she hadn't done enough college visiting to figure out what she wants, the reality that she might have a curtailed or interrupted time there as she'd still be on chemo -- she wants a "normal" college experience. I admit I fumed inwardly -- it could have been due to all the work I had done helping her, my mommy's drive to keep all options open for my "child" at all costs, my wondering if she'd regret it. But the rightness has resounded over the last few weeks, although it took a while to sink in. And if she hadn't gone half-way into it, she wouldn't have known for sure that it wasn't the right thing to do. SO -- we're thinking of college visits, and thoughts for next year, and on and on and on.
JANUARY 9th -- NADINE HAS FRIENDS OVER
Finally, Nadine's friends Rafi and Kara got to visit over here for a day -- logistics had taken weeks. It would have been a sleep-over if it weren't for her abysmally low counts. But the three of them managed to have a stellar visit -- drawing, playing "Set", cooking, the works. Kara met Nadine at the English Composition class at MCC, and they have been friends since then. She is tall, vivacious, and an excellent artist and writer. She also was apprenticing with an organic bakery (Small World I think) in Rochester, and prides herself on baking cookies. She brought a batch, and also sent some earlier in the mail including luscious macaroons. It was a pleasure having the nice company for Nadine. Rafi has been a friend for years, and was fun to have.
JANUARY 10th -- NADINE MISSES ORCHESTRA SECTIONALS -- (Sigh) She was too sick to go. She really wanted to go, and I had hoped she could, and she was lobbying to get to the sectionals at least, even if she had to miss the rest of the reherasal. Sectionals are when an instrumental section of the orchestra (in her case, the four flutes) would work together with a mentor -- theirs, as before, was Rebecca Gilbert, the principal flutist of the Rochester Philharmonic Orchestra, who was wonderful and also demanding. The rehearsal afterwards (the same day)( could be spectacular as well, after each section got a coaching. I'd gone through contacting each member of the flute section to see if anyone was sick -- they weren't. Even Rebecca Gilbert had emailed me that she was fine. But Nadine was in bad shape counts-wise and perhaps feelings-wise as well, and it wasn't worth the risk.
MOM FEELS SICK RIGHT BEFORE SHE HAS TO ACCOMPANY NADINE FOR COMPETITION ON REALLY HARD SONATA
For a while I was exhausted, yet had trouble sleeping at night, trouble feeling okay during the day. Then I ended up with a sore throat, mucous, awful. And it meant I felt it was important to stay away from Nadine, use more sanitizer, sometimes wear in a mask in the car with Nadine, etc. I took a nap on Monday and then had a hard night resting up on Monday night; tired perhaps on Tuesday, so I dragged myself through staying up all day Tuesday to avoid a repeat of this. I was t too weak to do much of anything, and I rabidly wanted to be okay for the scholarship competition for Nadine but was stuck in bed. After all this work!
On Tuesday January 12th, Nadine was going to drive herself to her flute lesson (wisely to avoid me), but Sophia had a cold and it wasn't worth it for Nadine even if it was her last lesson before the competition, so she stayed home and did a lot of practicing here, sounding wonderful.
And here was Nadine's scholarship competition coming up, the one I was accompanying Nadine for with the Prokofiev sonata, and I'd been working SO hard on it, and then I lost ground because I was so sick. Oh my. I could barely sit at the piano, let alone practice..
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