September 15, 2017 medical appointments update

This past Friday I had my regular every-six-week oncology appointment followed by my regular every-three-week infusion of Herceptin and Perjeta.  These were to be followed by an initial appointment with a gastroenterologist, but that last appointment didn't happen.  Here's how the day went:

I was seen at the clinic in good time.  We talked about my balance issues, my exhaustion level, the fact that the new med we're trying seems to be working.  I told her about the headaches I've been having.  I showed her the pictures of my family and I with Rick Springfield (she had to sign a form for the organization who provided the tickets; I always like to follow up with her after these things).  It was a very nice visit.  Orders were placed for my every-three-month CT scan, my every-three-month echo, and for a brain MRI; the brain MRI because of the headaches.  I'm to try to schedule these for the last week of September, on the same day, or as close as possible to each other.

I arrived at the infusion center approximately thirty minutes late.  That's not unusual. Sometimes the clinic upstairs is running late, sometimes the infusion center is running late; sometimes everything runs on time.  You just never know.  I arrived at the infusion center around 12:00noon.  The took me back to a cubicle at around 12:30 and took my vitals.  Around 1:00pm the nurse accessed my port (which was a little difficult today) and started Zofran, the only pre-med I receive.  The Zofran takes about ten minutes.  I notice after awhile that it's 2:00pm and the Herceptin and Perjeta aren't here yet.  Apparently the pharmacy is running a little behind.  My appointment with the Gastroenterologist is for 2:00, though (I thought that with an 11:30 infusion appointment, 2:00 would be good).  I clearly will not make it in time.  My infusion nurse called upstairs to let them know I was running more than an hour behind, and to ask if they would still be able to see me.  She spoke with the doctor, who then called me.  She was so incredibly nice!  She asked what my symptoms are, asked a few more questions, then told me that I should call Speech and Pathology and tell them that I need a Modified Barium Swallow.  If that doesn't show anything, we'll do an endoscopy.  We'll reschedule the appointment once she has the results.  As soon as I hung up with her, I was able to get that scheduled, for Tuesday.  The same scheduler was able to schedule my CT and MRI for next Thursday.  I'm still trying to fit in my echo. 

So, Jimmy picked me up, and we ended up getting home around 6:30pm.  Man, was I exhausted.  I think I slept pretty good Friday night.  I did have to set an alarm for Saturday morning, as my wheelchair was delivered at 9:00am.  Now the boys are working on constructing a ramp to get the wheelchair in and out the garage door.  We're also trying to find the most cost efficient/easy for me to use a ramp for the van.  To have the van converted is just out of the question.

I spent Saturday and Sunday sleeping most of the day.  Back to work today, Monday, and it was a great day.  I realized mid way through the day though, that I feel like I did during those months before my diagnosis -- scared a little, or maybe a lot, of what the test results will be.  This seems to be a little more than my regular scanxiety.  I'm worried about what these new, non-routine tests will show.  I'm worried that the swallow test will be inconclusive and an endoscopy will need to be done.  I'm worried that either or both of them will show cancer in my throat.  I'm worried that the MRI will show cancer in my brain (headaches are a symptom).  I'm worried that feeling the same uneasiness waiting for these tests and results as I did while undergoing the original tests and results means they'll result in the same bad news.   I'm worried that the median life span of a Stage IV patient of three years will be accurate in my case (it's been about two and a half years to date).  I'm just worried....


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