Sunday, November 21, 2010


It is something to say when you just don't know what to say, states Mary Poppins. So I am saying: "Supercalafragalisticexpialadoshus." It at once satisfies the craving for an expletive and for utter nonsense. The situation I'm going through is nonsensical. There are no answers and there are no words, so I'm saying this one loud and don't care if I sound precocious.

Turns out that my mom and I enjoyed another mini vaca rather than a treatment ordeal in New York City. This time: a 45-minute drive to my parent's house; a 40-minute drive to the train station; a two hour-15 minute train ride; a 20-minute taxi ride to drop our suitcases at Miracle House and a 35-minute taxi ride across Manhattan to Sloan-Kettering for my appointment – all the while hopeful that my doctor's visit would be followed by chemo treatment.

However, the timing just still wasn't right. A finger prick blood work report revealed that my platelets still hadn't risen high enough to be able to receive another chemo dose. The number needs to be at 75,000. I was at 56,000. My oncologist kept expressing how badly she felt that I made the trek all the way in, but that she had been optimistic even after receiving the blood work report I had gotten locally the day before. I was at a count of 50,000 then, so at least I am on the upswing. She had wanted to see me anyway and I had wanted to see her as well. It was good to check in and talk some things out even though there was no chemo to be had.

The plan is to try again next week. This will now be week 7 of recovery. I'll have my blood work checked locally on Monday and if my bone marrow has done its job over the weekend, I am scheduled for chemo in New York on Tuesday and Wednesday. If my counts haven't hit the mark by Monday, we'll check again Tuesday and aim for chemo Wednesday and Friday. Sloan-Kettering doesn't administer chemo on just two days a year: Thanksgiving and Christmas, so they'll have to get an exception approved for me to go off of study protocol and have a day between treatments if the latter chemo plan is the case. I don't yet know what this will mean for turkey day with our families.

In talking with Dr. Moskowitz, it turns out that I am not alone in this conundrum, that several people on the clinical trial are experiencing the same challenge of slow platelet recoveries. In fact, she said that if they could rewrite the study with a smaller dose of Bendamustine with the data that they now have, they would. All of the 29 people on this study with me have been through many, many therapies, most also had failed autologous transplants so all of us have pretty wary bone marrow. With this said, the plan is to get a reduced dose for the next infusions ... hopefully this will lessen the recovery time at least a bit.

We left Sloan and decided rather than heading back to CT, we'd make the most of our time in the city and spend the night anyway. We did lots of people and bright lights watching in Times Square as we waited in the TKTS discount ticket line and came out with tickets to Mary Poppins on Broadway. After a nap back at Miracle House and a dinner of decadent savory crepes at a French cafe, we settled into the New Amsterdam Theatre for the production.

Mary Poppins was the absolute perfect choice – a total escape into colors, special effects, dance numbers, and fantastical, whimsical wonderfulness. Call me cheesy but I love that over-the-top showmanship only Disney can produce. We were both so in awe of all of the surprises and the amazing imagination behind the show. Rather than thinking about how the cancer has yet another week to grow before getting a chemo whack, instead, I was able to whilst about jumping into a painting and dancing with statues, about tap dancing chimney sweeps that serve as lucky guardian angels, and about the premise that "anything can happen if you let it." I lost my own worries in the music.

After a brisk walk consisting of lots of humming, we slept hard. We joined a group of others from Miracle House for breakfast, one of which was a man in his late fifties facing the premise of a bone marrow transplant to treat his leukemia. His match is his twin brother in India who just suffered a massive heart attack. We spoke a lot about the transplants I've had and what got me through. He was so grateful and told me that he was so scared before, but that now he had hope after seeing me and how well I looked and how upbeat I was. I told him that attitude is everything and that he will get through it, too ... even the bad days. I was only paying forward what others have done for me by sharing their stories. Those Miracle House breakfasts are about so much more than pancakes and eggs. I look forward to seeing him again this week.

We decided on a later train to give us time to geekily wave behind the set of the Today Show, see the big tree being set up in Rockefeller Center, get suckered by the vendors along the touristy streets, marvel at the beauty of St. Patrick's Cathedral and wander from one beckoning retail window scene to another all the way down Fifth Ave to Grand Central.

Cheeks rosied from the November air and calves weary from all the walking, the train ride home was spent nodding in and out of slumber. The track rumbles lulled us to sleep ... a sleep interrupted intermittently by the garbled, incoherent sound of the conductor's voice over the speakers.

1 comment:

  1. incredible how you always make the most of every situation. a breakfast. a missed chemo op. a last minute show.

    thinking of you.