Imagine taking a pair of pliers and grasping your jaw between your ear and the midpoint of your chin. Apply pressure. Now, twist and hold for thirty seconds. That’s what shingles did to me last Sunday night. Then, for good measure, it stabbed me in the ear the following night. My reward was a morphine patch. I have been plenty high, Kimosabe. Not fun though as I wait for the hammer to drop another time. Read the rest of this entry »

There are words that one never uses. Then, one day, that word seems to dominate every conversation. This past weekend for me, it was occlusion. I’ve been packing a portable pump that dispenses medications for my shingles. It pumps this medication into my catheter. If the line is blocked, the pump calls it an occlusion. There are occlusions “up” and occlusions “down.” The pump is able to distinguish and run a banner headline above its controls. I’ve had several of each kind. On Sunday (of course) I got an occlusion down and I couldn’t fix it. When I did, the pump screamed “set 4″ as if it were a tennis match. No one, including the pump renter outers knew what “set 4″ meant and it wasn’t in the user manual. All we knew was that the pump had begun speaking in an unknown language and was obviously broken. We had to go back to the hospital for an exchange. When we arrived they were unable to figure it out. Then they checked the line to the catheter. When the nurse had changed the bag of meds, she had to clamp down the line. She had forgotten to unclamp it. The pump was not at fault. We had all jumped to the wrong occlusion. Read the rest of this entry »

As some of you might have guessed, the gap in postings indicates that the past week or so has not been easy. It could have been easier. Most people don’t start off their transplant experience with a case of shingles.

Shingles is like chicken pox. It’s gooey kid-stuff that hangs around dormant in your system just lying in ambush for the opportunity to attack when resistance is low. The whole point of a stem cell transplant is to break down the immune system. So, four days before the transplant, I developed severe headaches. They were like a hard wire brush being held forcefully into the sensitive area in the back of my head. Within days, the left side of my face had broken out in sores. I was put on heavy narcotics. Read the rest of this entry »