I should be recovering from Bendamustine cycle 2 right now, but I am not. Apparently, I am still recovering from Bendmustine cycle 1, but did not find this out until Craig and I traveled all the way into New York City expecting me to get treatment.
After an hour drive south, we stayed with Craig's aunt in Trumbull Wednesday night who then graciously escorted us to the Metro North train station to get us into the city the next morning. We took an early 90-minute train in so that we could make it from Grand Central to Miracle House to drop our suitcase and get back across Manhattan to Sloan-Kettering to make a 9:45 a.m. appointment with the oncologist. Needless to say all of the packing, schlepping, car ride, train ride and taxi rides was exhausting.
I had my finger pricked for a CBC (complete blood count) check per usual then was ushered in to meet with Dr. Craig Moskowitz, as opposed to my usual doc, Alison Moskowitz (no relation) who was rounding last week. His fellow came in and checked me over and I recapped the myriad
symptoms I'd experienced over the three-week recovery period. Then the doctor came in and we did the same. He was obviously wicked smart and incredibly breezy about everything. He didn't feed into the need that Craig and I have to try to control everything about my care: Will we
do another round even though I have chest swelling? Will the transplant team be ready as soon as I have a clear scan? What about trying another drug with a shorter recovery period?
I think he got quite a kick out of us, this young question-firing couple. The doctor looked me straight in the eye, took a deep breath, smiled and said: "You know your body best. Don't worry. We know what we're doing and we're not going to let anything happen to you." It was such a simple reminder to just breathe and to realize that I am in one of the best places in the world to be treated at and that I am working with the best of the best medical staff. He, in particular, has a huge reputation in the lymphoma world and authored the study that I am on. I was a bit humbled.
He ordered the chemo and Craig and I headed to the chemo suite waiting room where we settled in for what we knew would be a long wait after our experience the previous month. We had DVDs, games and books at the ready. But before we could even start up the laptop, one of the
session assistants came over to me and whispered that I was wanted back in suite 1, that I wasn't going to be receiving treatment.
My heart sank and I was in complete shock, immediately filing through what possibly could have happened, a slight terror shuttering through me. I honed in on the fact that the little finger prick I had received early in the morning had elicited enough blood to sufficiently soak through the layered gauze and eek through the Band-Aid that was wrapped around it. I came to the hypothesis that my platelets must be very low. Damn it.
We got back to the suite and were immediately grabbed by an unfamiliar nurse who pulled us into a teeny room full of files and computers and told us to wait for the doctor. I heard her say to someone outside the door who was questioning our presence there: "It's just for a minute. It's a very special circumstance." Craig and I looked at each other with the panicked: what the hell is going on? look.
Dr. Moskowitz popped his head in with the update: "Your platelets are too low."
Ah, I was right. Platelets are the blood cells that help blood stick together and clot. If there are not enough of them present in my bloodstream and I were to cut or badly bruise myself, I could bleed to death. He explained that my count registered at 45 K/mcL (reference range 160-400 K/mcL). On the study, it is written not to treat someone under 75 and he explained that even if I wasn't on the study, he would never give a patient another round of Bendamustine with a platelet count under 50. No chemo for me. I wouldn't be able to get a platelet transfusion either. What I needed was time for my numbers to recover naturally.
"We'll try again next week," he said through a smile and told me to get my blood counts checked locally the day before and have them faxed. As instructed, I had been doing this once per week for the three weeks prior, but my counts had held and apparently none of us imagined that I'd suddenly drop so low four weeks after treatment. This was supposed to be treatment week.
This was frustrating, very frustrating. And even though I wouldn't be receiving chemo, there was still lots of waiting to be had. As a post-autologous stem cell transplant patient I still have to receive monthly Pentamidine breathing treatments to prevent me from contracting PCP pneumonia. We waited. And waited. And waited for my name to be called by the respiratory therapist. Soon I began to go batty. We were both exhausted, disappointed and frustrated, so much so that I just kept laughing for no reason and kept pretending my iPhone was a taser and "zapping" Craig with it, which kept me very entertained. Reading, writing, games were all far too much to concentrate on. Hearing Craig say back: "Don't taze me, bro" a few times over was much funnier.
Two-and-a-half hours later I was brought into a little room and zipped up in a plastic tent just wide enough to envelope me and my chair – similar to E.T. when he's being examined by all of those scary scientist men. I sucked the medicated mist from my plastic peace pipe until the 20 minute treatment was over and I could be unzipped and released out into the world.
We crashed hard after a taxi ride back to Miracle House. We stayed the night and made the most of it. Plus, we were in one of the newly renovated apartments at MH – very hip. After a big nap broken only by the incessant honks of the backed up cars in 43rd street rush hour, we watched Toy Story 3 then meeting up with good friends for dinner at Five Napkin Burger - a super trendy joint in Hell's Kitchen. Laughs, shared stories, and mile high burgers helped alleviate the frustration.
Now it's back to the city in T-2 days for a second attempt at this.