Marguerite’s famous cupcakes
First, thank you all for the messages of support; whether is was a comment here, on facebook, or a private message, they are all so very appreciated.
What a week! I’ve not written sooner as there has simply been no time. In anticipation of an upcoming biopsy and perhaps the start of a new clinical trial, I had left my days rather open. Well, nature abhors a vacuum and once we got the good news, my calendar filled up fast. David had a business trip planned to France that had been put on hold, but it too rematerialized, and he has been out of the country for seven days now. There has been a good deal of general scrambling this week; on more than one occasion, I’ve driven Peter to school still dressed in my pajamas.
I may struggle to keep my own house in order, but at my home away from home, The Yawkey Center at MGH, calm prevails.
The level of care I receive is extraordinary. When I walk up to the desk in 7B, I am greeted warmly and by name (as are all the other patients). The trio of phlebotomists are cheerful and exceedingly competent and getting blood drawn is drama free. Generally I recognize a patient or two, and on this past Monday my friend Christian and I had some time to socialize before being called in for our respective appointments.
When first led to my private room, I am weighed, my temperature is taken and my oxygen saturation and blood pressure are measured. On Monday I was just making myself comfortable when Marguerite came in, bearing a dozen red velvet cupcakes. For ME.
I met Marguerite four years ago, on October 1st of 2008. It was the day that I was first dosed with PF-02341066; now known as Xalkori. Marguerite was the phase I Research Nurse and she quickly became my go to person for support. I jokingly called her Mother Superior; she was so obviously in charge and yet also entirely accessible. Recently she transferred from phase I to the thoracic unit, which means I will be seeing her much more frequently. I couldn’t be happier; I adore Marguerite. And the cupcakes? Just the icing on the cake.
When Alice (Dr. Shaw) came in, we went over the scans side by side with the images from six weeks prior. Clearly, the cancer covers exactly the same area as before. No better, no worse. However, to my eye there appeared to be areas of less consolidation in the current image. Alice cautiously concurred, although our observations are not supported by the radiologist’s support. Encouraged, I resolved to shoot for the moon and hope for more resolution on my next scan.
We then discussed the congestion in my lungs, which is again becoming more problematic (it seemed to clear up somewhat after the course of antibiotics for the UTI). It is a relief that my symptoms do not seem to correlate with progression of the cancer, but it is also a bit confusing. I wondered if it were possible that anatomical changes might a contributing factor and Alice said that it is certainly possible; scarring in my lungs could in fact lead to a decrease in function. We decided that daily use of a nebulizer might help.
As Alice listened to my chest, I showed her the middle toe on my left foot, which I had stubbed rather badly the day before. After she left, my scheduler Mike came in and I exchanged my dosing diary and old bottles of drug for new, before grabbing a quick lunch with Christian and then heading north to pick Peter up at school.
By the following morning, the appearance of my stubbed toe had changed dramatically; an angry throbbing red, I felt pretty certain it was becoming infected. Peter had an interview at Exeter that afternoon, and I was unable to get into my GP in the window of time I had before I needed to pick him up at school. So I called Alice. We agreed that I should go to urgent care after Peter’s appointment and that the attending physician would call her before prescribing an antibiotic. “But Alice”, I said, “I won’t be able to get there until at least six and it will be after hours for you.” Her response? “So?”
In short, I was diagnosed with mild cellulitis. Alice was called and an antibiotic prescribed. It was after dark when Peter and I got home and there, sitting on our doorstep, was a box containing a nebulizer. No prescription to fill, no discussions surrounding insurance, no arrangements to make. All the hard work had been done for me, and now all I had to do was plug it in.
Extraordinary.
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life and breath: outliving lung cancer 