Monday, November 29, 2010

Bendamustine Cycle 2

It was last Monday at 6:30pm that the (212) area code came through on my phone. New York. Craig and I were cozied on the couch already beginning evening news watching routine. I conceded to the fact that I wouldn’t be getting Bendamustine treatment the next morning at 8am as scheduled. That day my local bloodwork check revealed a platelet count of 65. It had risen only 8 over the last five days. How could they expect it to jump to the required 75 in just a day?

I was wrong. My nurse, Brynn, called and said that the team still wanted me to come to the Sloan clinic the following morning. She said that I would think she was crazy, but that she was passing on the word exactly from Dr. Moskowitz’s mouth.

“We got your bloodwork today and see that it’s still low, but we’re going to try something,” she said. “I’m being for real. Right before you get your finger pricked we want you to jump up and down for 15 seconds.”

I told her that yes, that was random, but that I’d do it for sure; that’d I’d do handstands, cartwheels, jumping jacks, whatever it took to be able to get the treatment that I needed. She explained that some of the oncologists had discovered that getting the heart rate up immediately before the blood is drawn can have an endorphin effect which can spike the platelet results. The act can shake things up and force the cells to multiply – if only temporarily. It had worked for another woman on my study and we were hopeful that it would for me to.

So, we grabbed our now nearly permanently packed bags and were on the 7:57pm train to New York City. We didn’t want to deal with a 4am wakeup the next day and luckily had not yet canceled our Miracle House reservation.

Tuesday morning I pulled on my jumping boots and we made the trek across Manhattan. While waiting for my name to be called, Craig pulled me into a side hallway. Little did I know, he had queued up the Rocky theme and was very serious in his coaching role. “Gonna Fly Now” played through his iPhone and he encouraged me to start bouncing. I did a combination of awkward jumping jacks and aerobic steps all the while knowing patients, doctors, nurses could turn the corner at any moment to find the Richard Simmons worthy scene we were creating. He had me going until I broke a sweat and had to strip down to a t-shirt. I was pumped.

Then we heard my name. I explained to the lab tech that I needed to do a few more jumping jacks while she laid out the needle, gauze and Band-Aid.

“Oh sure; whatever it takes,” she exclaimed excitedly and began to dance and laugh right along with me.

I upped the 15 second recommendation to 1:30 seconds watching the red second hand tick as I flayed about then plopped into the chair for the finger prick. The tech was ready with the needle and vile.

Craig and I waited anxiously under the blinding white lights of the doctor’s exam room.

The door opened slowly and in popped a red faced and beaming Dr. Moskowitz who proclaimed: “Happy Thansgiving! You’re getting treatment!"

We all cheered like goofballs as she read the lab results with the platelet count of 78. Brynn poked in to give a yelp as well. Dr. Moskowitz then revealed to me that had it taken one more day for my platelets to reach 75 I would have had to been pulled off the study. I don’t even want to think about what that would have meant as this is the drug that I need. There are very, very few – if any – other tricks in the bag. I am glad that I didn’t know this tidbit beforehand. That was a very wise omission of info on her part as I had been uneasy enough about being off treatment for seven weeks.

It was so odd to want something so desperately that I knew would leave me hurting so badly. It was a massive relief for all of us. Besides that nagging desire to live, scientifically, the team at Sloan of course wants me on the study so that they can watch me meet success, so that they can prove that this course of treatment works and so that they can help other patients in the future. It’s strange to think of myself in these terms and of course these are not terms ever spoken by my medical team, but I am a rare scientific specimen. I am in a clinical trial for a reason. They need my data. They need to study me. I need to live and I am putting my life in the hands of this medical science. I am more than willing to do whatever it takes and hope that everything that I am going through will make it that much easier for the next person.

The chemo infusion itself went without a hitch. Dr. Moskowitz ordered a slightly reduced dosage, which the study allows for in the second round. The Benadryl they require made me groggy and woozy but the 40 minutes went quickly.

Riding the usual steroid induced high, Craig and I did some exploring in the city’s design district. We spent hours perusing through the visual wonderland that is ABC Carpet and Home taking in floor after floor of creative, artistic interior d├ęcor. Every single thing in that place is a conversation piece in and of itself. Then we snacked on rock hard NYC pretzels from a cart and stumbled upon a huge open-air holiday market in Union Square. Under every tent was a different artisan with something mind bending, intriguing and unique to explore.


Suddenly the steroids wore off and the Bendamustine in. My legs started to swell and give out and my head became very heavy. It was time for my prince to escort me “home.” Both chilled and flushed from the long day I burrowed into the bed covers in our Miracle House room to indulge in a much needed before-dinner nap.

We then gathered with a group of nearly 20 other patients and caregivers staying at MH that evening for our biggest group dinner yet. We all ducked out from the cold November air and into the reserved tables at Pom Pom diner. We shared a booth with a fascinating woman from Nebraska who is a calligrapher, an educator and an arts and books lover among many things. We had very much in common, and it was comforting to hear about what she’s learned and experienced through taking care of her ailing father – a retired English professor. There were many others there too. Some knew already that they would remain in the city through the holiday. Others were packing up to make the trek home to their families with plans to come back for their next treatments, procedures, and adventures.

On top of the post-chemo symptoms, a cold had set in and my nose was continually running just as much as I was sneezing. Sleep was hard to come by and my nose had become raw from the continual tissue rubbing. But it was up and at ‘em early again on Thanksgiving Eve for infusion number two. My ever- patient husband waited away the hours with me as my chemo was mixed until I was finally “served.”

The train ride home was packed wall to wall with people, baby strollers, suitcases, and shopping bags. Every seat was taken and even the vestibules were full all the way along the New Haven line. We were fortunate to have gotten to Grand Central early enough to get a seat of our own. It was a beautiful thing to watch the human dynamics. Despite how cramped it was, I witnessed so many people helping to hoist others’ bags on the racks above their heads, giving up seats for the elderly, helping women with strollers to navigate between the cars. It made me smile between sneezes and chemo flush waves to think about who and where they were traveling to and what it would be like when they got there. Would their Thanksgiving table be a Turdukin or a Tofurkey table? How long had it been since they’d seen their families last? Were they looking forward to or dreading the reunions?

Despite how awful I felt and how desperately I wanted to be curled with Sammy on my couch, my chest was filled with a palpable fullness of contentment and astounding gratefulness to have my husband’s shoulder to sleep on and so many more loved ones to look forward to sharing the holiday with.

1 comment:

  1. Hip hip hooray for a hip hopping happy day! Jumping, hopping all to elevate those special cells! Great. Just like Rocky prepping for a fight - skipping, hopping, jumping rope - well you are prepping for a fight - a fight for your life.
    ~Nina

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