And Then I Got Cancer

Today is day 4 of my first, and hopefully last, clinical trial. It's the first day I haven't had an appointment at the Sarah Cannon Colorado Blood Cancer Institute. I think it might be good luck that the institute and I share the same first name. CBCI is attached to Presbyterian St. Luke's, just a stone's throw from Denver's city park, where you would find the zoo and the museum of nature and science. Brent and I keep saying we'll go to the planetarium one of these days before or after one of my appointments, but it hasn't happened yet. The first day of the trial was long, over 12 hours. It started with an icy drive in, followed by a few unsuccessful attempts to draw my blood before resorting to another picc line. I then met with Dr. Maris, who gave me news I should have been expecting. The results of my testing from the previous week were in, and they didn't look awesome. My bone marrow biopsy showed that the leukemia was back up to 30%. Since my las...

I hope you all had a lovely New Year's celebration. Not a lot happened round my way, but David spiced things up by participating in the Polar Plunge at the Boulder Reservoir. I don't know who started this trend of running into freezing cold water to ring in the new year, but I'm not surprised. People will stand in line and pay lots of money to do all kinds of weird things. Brent and David and I all went to the plunge on New Year's Day. There was a decent crowd gathered, with a warming tent where beer and pizza were being served. The crowd was divided into teams and individuals, and each entered the water in order of money raised for the cause (the cause being the American Cancer Society). Some of the teams wore matching outfits, like the guys in the speedos and bowties. The time came for the plungers to get in the water, and for the most part this involved bodies running full tilt into the water, flailing and splashing, sometimes high-fiving the rescue swimmers, then...

I miss laughing. I've had a pain in my diaphragm or ribs, I don't know which, for weeks that gives me trouble every time I laugh, yawn, cough, cry, or vomit. This pain wasn't the only reason I haven't written in so long, but I think it was a contributor. To catch you up on what has happened since my last post: I went home from the hospital feeling weak for some number of days, then started having this pain that sent me back to the ED (no one in the know calls it the ER anymore, it's the "Emergency Department"). It seemed for a while that the pain was related to my gallbladder or lung, and I stayed in the hospital for maybe another week waiting to find out what was wrong with me. Someone had done the math and figured out that I had already spent just about 100 days in the hospital since my diagnosis. I'd like to think it was exactly on day 100 that I couldn't take it anymore. On day 100 or thereabouts I woke up watching the clock and telling all ...

I think I get to go home today. I say I "think" because most of the medical teams have thought I'd be able to. I don't have the final word yet, though                                                                                                                                . I'm quite a bit weaker this time than the time I was discharged. It's taking me a whole lot longer to write this post, because I keep making spelling and grammar errors, and going back and correcting them. I don't know if that's a function of my brain or my small motor skills, but either way it's a pain in the butt. On the up-side, my iPhone recognizes my thumb print again. I don't know how chemo...

I haven't written much lately, I know. I've mostly been in pain or tired. This round of chemo has taken much more of a toll on me, and the things I used take for granted before have become major points of consternation. Some time around my last post I asked Brent to bring a ball to kick around at the park. It was a really windy day, which I didn't realize till I got outside, and we had a hard time getting that ball back and forth to each other even in a small area. I felt good that day, though. I felt like I was getting exercise and staying strong and so forth. It was one of those perfect fall cancer days. I can't quite remember when the shift happened. The teams of doctors round on me every morning when I'm still half asleep. Mostly they talk about my fevers and the status of my various infections and how well or if my cells counts are improving. But at some point the Nephrologists got pulled into the mix. I felt awful and weak all the time. Sometimes I had to a...

Figure 1. The last time I wore a suit My Sister said she wasn’t updating her blog because there was nothing funny to write about, so I offered to fill in for her. I am not nearly as good a writer so please forgive me, I just thought it would be worth giving her many fans an update. Imagine that your body is expanding like a balloon and the hurt is coming from so many different places at once there is no non-hurt to compare it to - hurt is the state of the world, without boundaries. Imagine that nausea has been going on for so long there is no longer a concept of non-nausea. Imagine a grey sea of pinging bells, poking needles, concerned whispering visitors, cautiously optimistic news every day until cautious optimism is indistinguishable from the relentless pain and nausea.   Not every single moment is like this of course - just most of the moments.   Sarah’s white blood cell count is coming back up again after hovering at 0 for a couple weeks, when sh...

I haven't written in a while. I've been feeling pretty terrible. A few things happened at about the same time that left me mostly confined to my bed. My hemorrhoid came back, and then it clotted. It was excruciating, and I started taking Percocet. I stopped getting out of bed except to use the bathroom because it was too painful to walk. Maybe that's why I didn't notice that I had a new infection in my blood. Some sort of resistant klebsiella bacteria. The infectious disease team seemed kind of excited that they had to order in the antibiotics from somewhere else because it had only been approved this year and they hadn't had a chance to use it yet. I would tell you the name but it's really long and I can't pronounce or even spell it. Then they got really excited when they said that if this bacteria mutates again, they'll have to use an antibiotic that was only approved two weeks ago and hasn't yet been used in the state of Colorado, or probably at ...