“And then the men go marching out into the fray Conquering the enemy and carrying the day Hark! The blood is pounding in our ears Jubilation! We can hear a grateful nation’s cheers!”
Rich and I began dating in High School. Maybe it’s because we began as a couple during rehearsals for the musical Camelot, but music and musicals and theater have always been amongst our greatest joys. Shortly before his diagnosis, my birthday gift was a wonderful day in the city where we had a terrific dinner and saw Pippin. It had been over thirty years ago when we had seen it on Broadway. What a thrill to see the new revival!
Yesterday, the lines above kept running through my head. As I sat in my germ free head-to- toe condom in our room, I got the message… it’s time to fight this out. It’s time to carry the day.
As Rich’s temperature continued to hover under and over the fever mark, his spirits were steadily dipping. It was time to go home but the magic number on the thermometer eluded us.
Every time his temp spiked… and by spiked, we mean 100.4…. another batch of cultures was done. All came back negative.
We argued with the doctors on rounds. If we were home, the protocol would be to take two Tylenol, take a temp reading periodically, and go to the ER if the temp while on Tylenol remained at 100.5 for twenty minutes. We haven’t met that criterion in four days. And yet here we remain.
A poor resident from Infectious Diseases came to evaluate Rich. This earnest young man thought we’d be here at least another five days. Right. He laid out a course of tests that would be his suggestion. Right. We explained that that would not be happening. All the tests, including the CAT scan came back negative. Rich is on every anti-medication that they can throw at him. If it’s a bacterium, fungus, virus, he’s on a med to fight it.
The truth of the matter is, with stem cell transplants, sometimes you just get a temperature. No reason, you just do.
Next our stem cell doctor came by. We explained our feelings on being here any longer than absolutely necessary. And she agreed, sometimes there just is a fever. No reason. It just is. She said we’d be out by Monday. We asked her for Sunday. It’s a small difference but in our world, it’s time. She agreed. We explained that the cultures continue to be done. She said they would stop. With Rich’s triple lumen out and his last day of neupagen earlier in the week, he’s got most of the pre-discharge prep done.
As she left, we heard her tell the nurses to take him off the IV antibiotic and start on oral meds. She said the doctor on call for the weekend would be told we’re going home on Sunday. She said it was time we went home.
This is, again, the reason why we are with the medical team we are with. They listen. We’re not just the NHL SCT in room M715.
A radiology tech stops in the room to do a chest x-ray. We refuse. Rich had one two days ago. She tries to convince us but we refuse. A nurse comes in and takes Rich’s temp. 101 in one ear, 100.5 in the other. Oral temp… 99.7 We insist she use that.
The night nurse, an angel in scrubs, looks over the blood counts and compares it to the dates/times of the fever spikes. The spikes in temp coincide with the extreme increase in blood counts. It’s Rich’s body taking exception to these changes going on.
Today the on call doctor came around. Afterwards, we’re not sure he gets it. So, as I’m home now prepping the last bits for Rich to walk through our front door tomorrow, Rich is asking for a meeting with the on call doctor again. To make sure he understands… we’re leaving on Sunday, September 14th. I hope the doctor is prepared. Because we are.
As Pippin sings….
“Everything has its season Everything has its time Show me a reason and I’ll soon show you a rhyme Cats fit on the windowsill Children fit in the snow Why do I feel I don’t fit in anywhere I go?
Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky
Every man has his daydreams Every man has his goal People like the way dreams have Of sticking to the soul Thunderclouds have their lightning Nightingales have their song And don’t you see I want my life to be Something more than long….
Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky
So many men seem destined To settle for something small But I won’t rest until I know I’ll have it all So don’t ask where I’m going Just listen when I’m gone And far away you’ll hear me singing Softly to the dawn:
Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky”
Use What Exists 