Diane and David had a beautiful seder Saturday, with Diane using plates and silver of our mothers to set the table.
On Saturday before I left South Hadley, Diane told me that she had said to David, "Our mothers are smiling down at us."
I had gone for a run and was still lollygagging in my running clothes. "And I can hear Mom saying, 'Ronni, get a move on'," I said. Which she often said at holidays when there was a lot to do but I had gone running first and needed a reminder to get my act together. That said, I did get a move on and got to Newton on time. My three children came, as did Meghan – her first seder. I love seeing them all together.
Katie has the week off, and we slept over Saturday and Sunday night because I had two appoingments at Dana-Farber Monday.
Everything went well. Here are the numbers:
White count, 6 (normal=3.8-9.2)
Hematocrit, 34.5 (normal=34.8-43.6)
Platelet, 88 (normal=155-410)
The platelets are fine for me, but I bruise very easily, sometimes in unexpected circumstances, reminding me that they are low. I have been going to yoga in a carpeted studio, but last week I went to a place with a hard floor. We were up and down, often on our stomachs. That night I looked down and saw a huge black and blue mark under my hip bones. At first I was surprised, but I realized it was from yoga. Next time, two mats.
Ferritin (the storage of iron) is still way high, at 5119 (normal is 10-170). I think the last time it was 8,000. This is from receiving so many blood transfusions. Melissa said not to worry because it's going in the right direction. I continue to take Exjade, the nauseating pill that lowers the level. You put five pills in water, dissolve and chug, then wait 30 minutes before eating. When I even look at the bottle, I start to feel sick.
The next thing I wasn't even going to mention because I found it embarrassing, but I talked to some people who had done it themselves and said it's not uncommon. So...I also had to do a 24-hour urine collection to get a closer reading on how my kidneys are doing. They give you a jug and a kind of bowl to put on the toilet, then you pee and pour. The jug has to stay on ice, so I brought a cooler and Diane provided the ice.
I thought it was going to be worse than it was, especially since I was at someone else's house. But I got a system going, and it wasn't too bad. They wanted you to drink lots of water. I complied but overdid it and thought I was going to float away. I don't know the results yet.
I was finished with Melissa around 11:30. My next appointment, with the "tongue doctor" Laura Goguen, wasn't until 2. I went upstairs to Head and Neck Oncology to ask if she could see me a little earlier. The nurse said maybe, but not any earlier than 1. I had gotten up early and was up half the night going to the bathroom after drinking all that water, so I curled up on a couch, using my coat for a pillow, and fell fast asleep.
I got in at 1:15. My mouth checked out fine.
Then I went out for a salad and toodled around (one of my mother's words.) I spent some time in a cafe on Lincoln Street, near Diane's house in Newton Highlands, and drank good coffee and read my book, "The Marriage Plot" by Jeffrey Eugenides.
Katie had some things to do in Boston, so we didn't leave until after 6.
It was a long weekend, but a good one.