Tuesday, March 27, 2012

Trial time

In my last dispatch I wrote about my decision to join a clinical trial now that Sutent is no longer keeping the 'spots' as my kids call them from growing.  Oh, so much has happened since those lazy days of mid February!

February 20 was spent at Cleveland Clinic going from building to building for various appointments.  I started the day with blood work, taken in the chemo lab so that they could access my chest port rather than try to find a vein.  The port was a bit sluggish in flushing and filling blood tubes; this dismayed me as I've kept the port in my chest just so it can be used for these things.  The nurse got it going, however, and after taking a number of vials, sent me on my way.  I met with the research nurse, then hiked over to another building to have an EKG and get an injection in preparation for a bone scan.  The EKG tech was not the friendliest of people.  I had been given a note to give her that explained that I needed to be at rest for ten minutes prior to the EKG, and that I was to be given the printouts to take back to the cancer center.  As she led me back to the procedure room, the tech read the note and rolled her eyes at the ten-minute wait... apparently this extra ten minutes was going to screw up her day.  She had me lie down on the exam table and left me to rest a few minutes.  I didn't mind because I was very sleepy, not having had any coffee yet due to having to be fasting for some of my blood tests.  When the tech returned she was a bit less gruff but then told me I was too tense so "Try to relax!"  Because it's just that easy when you're being barked at.  Right.  Finally she decided she had good readings and I was released to my next stop.

In contrast to my EKG experience, the tech in the nuclear medicine department who gave me the injection of radioactive dye couldn't have been nicer.  He was patient and friendly and put me at ease.  He sent me back to the cancer center where I had CT scans scheduled, since the actual bone scan wasn't scheduled for a couple of hours later, giving the radioactive agent time to circulate.

While I was waiting during the downtime between drinking oral contrast (no crystal light in it anymore - it was giving patients headaches!) and having the scans, I was able to take advantage of a nice program the cancer center offers its patients.  They have a practitioner there who will do Reiki, visualization and other complementary procedures.  My sister works at the CT scan desk there and so had scheduled for me to have a treatment, which I decided would be Reiki.  They have the nicest 'exam' table in this room; it's puffy like there are pillows under the sheet, and it heats up once you are on it!  The technician performed Reiki on me while I listened to a visualization exercise.  It was so relaxing that I could have napped there for a while. From there I went back to the CT room where they scanned my brain, chest, abdomen and pelvis for baseline readings to start the clinical trial.

At this point I was permitted to eat, but was now running late for my bone scan, so just hiked back over to that building.  I'd never had a bone scan before and didn't know what to expect; it's fairly quick and quite painless.

My last scheduled appointment for the day was a pulmonary function test, in yet another building, farther across campus.  I wore my pedometer that day and logged over 8000 steps going from test to test.  I had a few minutes to spare when I arrived so I stopped to buy a bagel and some water.  While I was in line to buy these items, my mobile phone rang.  It was Laura, the research nurse.  She asked me to return to the cancer center rather than go home after my pulmonary function test.  She said we needed to discuss one of my test results.  At first she didn't want to go over it on the phone, but then told me that my chest CT had already been read.  This was good news except for the fact that on the scans the radiologist found a pulmonary embolism.  She and Shari, my nurse practitioner who works with Dr. Rini, were working on getting more information about what to do.  I promised to return to the cancer center and went to check in for my breathing test.  My mind went to lots of dark places - was I in danger of keeling over at any time? - but I realized that if it were that serious, I would have been sent to the emergency department instead.

When I returned to the cancer center, I met with Laura and Shari.  Dr. Rini was out of town so they consulted with one of his colleagues.  They told me that the PE was small and in a peripheral area, which was good news, but that I would need to start anti-coagulation medication.  There are oral medications available, but they explained that those are hard to regulate dosage in a cancer patient.  Instead I was prescribed Lovenox, which I have to inject into my abdomen twice a day.  The syringe itself is pretty cool; it's pre-loaded and includes a spring-loaded safety shield that I activate after the injection to protect myself from the needle; Lovenox has a nice little video explaining it.  The bad part is, I have to give myself an injection twice a day; for the next six months at least.  I've actually gotten used to doing it; being a veteran of numerous medical procedures has definitely lowered my threshold of squeamishness.  After Caroline was born my OB had me do Lovenox injections for several weeks to prevent any blood clots after my c-section.  I remember that experience as being much more difficult; of course I was also in the throes of post partum depression at that time, which certainly colored my perspective.

A few days later, I learned that just like had happened in 2009, the CT scan of my abdomen was not picking up my liver mets.  Laura got me a quick appointment for an MRI so that they would have an accurate record. After the MRI results were released, I got word that I had passed all hurdles in starting the clinical trial.  The day before my first dose, Laura called to let me know that I had been randomized into the Afinitor arm of the trial.  I had mixed feelings about this news, because part of me was excited to be part of trying something new.  But another part of me felt a bit relieved to be dealing with the more known quantity instead.

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