On my way to day two of chemo superblitz…. two drugs at two diffferent infusion centers, one round of extra fluids to help me feel better, and the results of my tumor marker CA 27/29 test (a blood test that may give info on the direction we’re moving in terms of total body cancer burden…. it tends to be pretty accurate for me…) Meanwhile, the knitting for today is UNKITCHENERING. I am not kidding. My least favorite part of the whole process, but I just can’t justify tossing a whole finished sock in the trash so late in the game. Of maybe I’ll leave the sock at home and just snooze and chat with Sam,,,, he is a good infusion buddy, I am really glad he’s home.
I will add photos someday, but right now just use your imagination. I am day 3 post chemo, and had an MRI today, so being off the sofa was NOT exactly on my plans. But you see, George’s school, Park Road Montessori, was having their Winter Village this evening, with all sorts of special events. Danny NEEDED to go, to see old friends, and George NEEDED to be there for …. well, I wasn’t quite sure why but he was supposed to go. Of course Sam and Emily are still in finals, not home yet, and Dixon’s in the middle of his work week. Brian was otherwise committed. And of course there were so many people there that cars were parked on OUR street to walk to school…. (we drove… obviously … past people parking in front of our house going to where we were going, felt kind of awkward about that…) I grumbled. Way more than I should have. It was pretty bad.
Now remember that George is the first and so far only kid with DS at his school. He LOVES school, he loves his friends and his teachers Miss Amberand Miss Jennifer and his principal Miss Anna and I KNOW he is thriving in every way possible. But because Dixon walks him to school every day and Brian picks him up, I;m not there all the time to see it for myself and to get to know all his friends and their parents. So this was a special occasion…. (grumble)
The best way to explain how it went was that less than two minutes into our time in the classroom Danny had to remind me to “compose yourself, mom!” It was so beautiful. The children were sitting in two rows, George was at one end of the back row, and his excitement was absolutely contagious. His whole little body was vibrating. He had a young friend next to him to hold his hand and remind him to be a good listener – and he WAS! He stayed in his spot when he was supposed to, and stood up and sat down when everybody else did…. and they SANG! He chimed in with the last word of most of the phrases, sometimes a little late but always with tremendous enthusiasm. When they sang Jingle Bells, he shook his bells at exactly the right time – and even more significant, DIDNT shake them when he wasn’t supposed to. This is huge, I think.
Then the class did two demonstration Montessori works – the fours set out a table and put the candles in a Menorah, and then the fives (and George, who will be seven next week) rolled out a rug and set up a Christmas tree. Each child in turn walked carefully to the front and did their little part of the work, then walked carefully back to their spot on line. George, at the end of the back row, was last. His little friend held his hand to help him wait his turn, and then she very deliberately put his hand into his teacher’s hand while she was doing her turn, and then she came back and got George, who knew EXACTLY what he was supposed to do. He got to kneel down and find the little switch on the battery box and turn the lights on the Christmas Tree. Everybody clapped. George clapped. I sobbed. Danny was rather embarrassed, but held my hand anyway…. I will try to post photos but I’m a little emotional at the moment. Overwhelmed with gratitude…..
At chemo, and my labs are adequate to get my infusion. Starting premeds now. I am happy now but later this week I think this will be the perfect example of a mixed blessing…..
Yesterday morning we all put on our dancing shoes and went to a fancy downtown hotel for THE social event of the Christmas season, with Anna Daughtry Moraglia and Juliane B. Femenella and her George and family too. Way too many of my George’s camp and learning program friends to count… Thanks so much to Kathryn Lariviere and her amazing team for bringing joy to so many people this weekend. My philosophical question of the year – why aren’t MORE of these big deal society events with disco balls and great music and everybody dressed to the nines held in the morning? It’s a FAR more sensible time to party than way late at night when everybody’s tired and cranky.
No chemo. Again. My bone marrow just isn’t participating, my white count didn’t bounce back, and the particular white cells that fight bacterial infections are actually even lower. I guess they’re just tired. I am very, very sad and discouraged.
OK, all, it is 1:34 AM and I am absolutely unable to sleep. The “what if’s” have taken over my brain and I can’t turn them off. Part of the problem was that I was feeling really quite terrible this afternoon and took too long of a nap, but the rest of the problem is that I am supposed to have chemo at 9 AM tomorrow morning. I have all the details worked out as well as possible, with every contingency planned for…. dixon getting stuck at work late, the potential for children getting sick when they are otherwise supposed to go to school, arthritis that prevents me from getting Danny;s shoes on over his braces, etc etc etc.,,, but what if my labs aren’t all better and I’m still not hematologically strong enough to make this infusion safe??? I already KNOW that I am going to be absolutely exhausted, with no sleep till now and then chemo and then after that Danny’s Boy Scout court of Honor and Brian;s symphony rehearsal…. Tomorrow we also get the culture and sensitivity results for an infection on my foot that has failed four separate antibiotics. I can';t think of a single good result that test could show… and we will see how much my transfusion bumped up my red cells…. Thankfully Dixon will be off work to take people to all these things, but somebody still has to hold down the fort around here, despite chemo and profound sleep deprivation….
Sometimes I think this is just all too hard.
In the seven minutes between home and the hospital, I managed to miss Maggie‘s band on TV at the Macy’s Parade in New York. The nurses had been saving me a spot right in front of the TV just in case, but since I missed it anyway, I’m in a quieter chair off to the side. And now they are re-running my type and cross because of some sort of problem. It’s just that kind of day. VERY thankful for neighbors Carolyn Kent Waterbury and Michelle E Troscianiec Braun and the Wileys and the Halls and everybody on Devon Drive who are bringing dinner at 3…. and of course, thankful especially for the O negative people who donated all these red cells for my transfusion today.
Here’s the Pride of the Mountains in the parade:
(Ann O hopes the link works but makes no promises.)