Wednesday, June 17, 2015

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.

Nicolas and the No Good Very Bad Day

Well, after a long day of travel yesterday I'm in Little Rock.  It's been a pretty lousy morning.

For a number of reasons I'm under a lot of stress right now.  So the hit parade began with a blood pressure reading of 148/110.  That's a new personal best.  Not in the right direction.

On the other hand, I was on time for my appointments -- always important but particularly important today as there is a lot back-to-back.

I got to the infusion clinic, my smiling and cheery self.  A nice nurse introduced herself.  I had requested some additional tests be run (immunization titres, the full cholesterol panel, etc.) and this had to be double-checked but we got that under control after a little investigation.

The lady tried to access my port, twice.  The first time was vey painful.  The second time was even more very painful.  She couldn't draw blood.  She capitulated and found a second nurse.

The second nursed confidently jabbed me.  The needle went in.  It hurt a lot.  They were unable to draw blood.  They put heparin in, and it went in, but nothing came out.  They tried again, nothing.  They then ordered another drug (Activase? could that have been it?) and I waited while that arrived.  It got there.  They adminsitered it.  We waited the requisite 20 minutes.  They tried to draw blood.  Nothing.

I'm getting pretty irritated by this point.  I went to go to my next appointment and told the nurses I would have to come back later. 

I got to the next appointment and they couldn't find me.  It's just as well, because I'd been kept so long that I was over an hour late.  In fact, I was late for the appointment AFTER the appointment.  So I went to that appointment.  The line to check in was enormous.  And the MRI was looming in 30 minutes.  So I left.  I don't need a pulmonary test right now.  I am mindful, dear readers, that I'm only here now (versus September) because Dr. Barlogie is departing and I wanted to see him one more time and also talk with his successor as the head of the instititue here, Dr. Morgan, to determine where I would be treated.

With 30 minutes remaning before the MRI and nothing to do, I went back to the infusion clinic.  A new nurse determined (based on redness and swelling) that the needle had been inserted incorrectly and the heparin and whatever else had been pushed into the surrounding tissue rather than the blood.  That would explain the pain and swelling.

I am at this point pissed off.  I hurt, my blood pressure is through the bloody roof, I've missed two appointments and I'm no closer to having any labs done than I was before I showed up.  Well I peed in a cup so maybe they can get some value out of that but otherwise this whole morning has been a waste of time.  Worse, because a simple waste of time doesn't involve the pain I'm in.

I'm not going to allow them to access the point again unless they numb the area.  There's a simple freezing spray that everybody else in the world can figure out how to get a hold of, they can damn well get a hold of it here.  I see a physician's assistant at 1PM on the other side of the MRI tests, and he can damn well prescribe this freezing spray for me or I am cancelling the whole battery of tests and getting on a flight tomorrow wihtout doing anything more than the MRI.

Screw this.  I don't need it in my life right now.