Frustrations continue — a partially wasted trip

So I never was able to get the port accessed today.  I did meet with a great guy who I’m going to call out here (sorta) — one of the physicians assistants, JA, who has been a fixture here over the last several years and is an extremely kind and attentive man.  He oversees my case so today I explained the port access issue and he managed to prescribe a numbing cream and we’ll try again in the morning.

Meanwhile, though, ALL the work I did to line up a very meticulous series of tests was evidently ignored.  We know we are looking for the lesions in my spine to resolve.  The last time I was here we determined that if they hadn’t resolved yet, they would stick needles in my spine to pull bone marrow out of the spots and assess what’s inside them.  This, as well as meeting with Drs. Barlogie and Morgan to help determine where I show up in a few months, was the point of my visit at this time.

I explained this to two scheduling nurses plus other people in the administration along the way as we scheduled my visit many weeks ago.  I probably communicated this to five people.

Instead, we have MRI only.  No time to get any other imaging required, no time to assess the MRI before acting, no bone marrow work besides the standard biopsy.

In other words, a wasted trip.  If the lesions are healed, great — I’ll celebrate.  Got some very good wine that I’ve been saving for such an event.  If the lesions are not, however, then all we’ve done is kicked the can down the road, and these tests (and the trips themselves, by the way — airfare and hotels are not free) are not cheap.  I could have gotten an MRI on the spine around the block from my house (metaphorically speaking).  I didn’t need to fly across the country for it.


When I sat back down in the clinic this afternoon, the blood pressure was even higher than it was this morning.  JA kindly offered me something for it.  I declined, but if things don’t go more smoothly tomorrow I may accept.  I don’t want to die of a conniption fit whilst trying to beat cancer.