[cancer] Field Notes from Cancerland, I habe a code in my node edition
Vectibix + Doxycycline
Have I mentioned how much this drug combination sucks? I'm already in full sun-aversion mode. My entire head itches as if it were one great, big pimple. My nose looks like a battlefield. To combat this, I am taking Claritin twice a day, and baking soda baths in the evening. A friend is even bringing baking soda to ICFA for me, as I don't want to travel with boxes of white powder in my luggage, things being what they are in the security theater business these days. Oddly, when I wrote my doctor and asked for a note explaining that I needed to keep my face covered from sunlight for health reasons, I got a nurse reply that advised me to wear a hat and use sunscreen. Which is idiotic. We already know I am waaay out on the response bell curve when it comes to photosensitivity, and I have months of experience with this drug combination. Sunscreen plus a hat doesn't even come close. And yes, I'm going to Orlando tomorrow. Because I am that kind of idiot.
Whole Genome Sequencing
Last week, Dad and I had a conference call with the chief scientist of the company handling the clinical analysis of my whole genome sequencing. It was an intermediate status update, with nothing actionable for us, but gave a lot of detail about how they processed the close to a full terabyte of raw sequencing data, and where they're going with it. We're looking at least a couple of more weeks down the road for a clinical report that might lead to some treatment changes. On the plus side, I learned that tumors have gender. My tumors have Y chromosomes, at any rate. Which makes perfect sense, but I'd never thought about it.
Talking About Whole Genome Sequencing
Yesterday I finished the first draft of the slideware for next week's Nerd Nite presentation on whole genome sequencing. This is of course from the patient point of view, as I am neither a scientist nor a physician. It was interesting to frame just the basic inside a 25-minute talk time. I didn't even touch on a lot of the weirder or more technical stuff. Presentation is off to the moderator for review and editorial input. Likewise, today I'll be talking to Theral Timpson of Mendelspod about the patient experience, and I'm providing material for a forthcoming Japanese-language article about my sequencing and the outcomes it has and will generate.
The Manifest Injustice of Illness
On top of everything else, I've managed to come down with a dreadful chest cold. This just after getting over a lingering mild head cold. There's a manifest injustice to being sick while you're sick, but I don't suppose there's anything about cancer that confers immunity to passing infections. I slept through most of last Saturday's dinner, missed the St. Patrick's Day party completely, and am still waffling on going to Florida tomorrow, though at this point I believe I will make the trip. Still, I'm dealing with so much, and now this. Really, universe?
Mortality
Continuing with the mortality fears and thoughts. Not overwhelming, not consistent, but fundamentally I'm still processing January's news that I'm incurable. I did a graph for the whole genome sequencing presentation which pretty much tells the story:
The Y axis is number of tumors, the X axis is the time of recurrence. I entitled the slide, "Holy Shit, I'm Going to Die!" On account of cancer rarely trends in reverse.
So, yeah, mortality.
Have I mentioned how much this drug combination sucks? I'm already in full sun-aversion mode. My entire head itches as if it were one great, big pimple. My nose looks like a battlefield. To combat this, I am taking Claritin twice a day, and baking soda baths in the evening. A friend is even bringing baking soda to ICFA for me, as I don't want to travel with boxes of white powder in my luggage, things being what they are in the security theater business these days. Oddly, when I wrote my doctor and asked for a note explaining that I needed to keep my face covered from sunlight for health reasons, I got a nurse reply that advised me to wear a hat and use sunscreen. Which is idiotic. We already know I am waaay out on the response bell curve when it comes to photosensitivity, and I have months of experience with this drug combination. Sunscreen plus a hat doesn't even come close. And yes, I'm going to Orlando tomorrow. Because I am that kind of idiot.
Whole Genome Sequencing
Last week, Dad and I had a conference call with the chief scientist of the company handling the clinical analysis of my whole genome sequencing. It was an intermediate status update, with nothing actionable for us, but gave a lot of detail about how they processed the close to a full terabyte of raw sequencing data, and where they're going with it. We're looking at least a couple of more weeks down the road for a clinical report that might lead to some treatment changes. On the plus side, I learned that tumors have gender. My tumors have Y chromosomes, at any rate. Which makes perfect sense, but I'd never thought about it.
Talking About Whole Genome Sequencing
Yesterday I finished the first draft of the slideware for next week's Nerd Nite presentation on whole genome sequencing. This is of course from the patient point of view, as I am neither a scientist nor a physician. It was interesting to frame just the basic inside a 25-minute talk time. I didn't even touch on a lot of the weirder or more technical stuff. Presentation is off to the moderator for review and editorial input. Likewise, today I'll be talking to Theral Timpson of Mendelspod about the patient experience, and I'm providing material for a forthcoming Japanese-language article about my sequencing and the outcomes it has and will generate.
The Manifest Injustice of Illness
On top of everything else, I've managed to come down with a dreadful chest cold. This just after getting over a lingering mild head cold. There's a manifest injustice to being sick while you're sick, but I don't suppose there's anything about cancer that confers immunity to passing infections. I slept through most of last Saturday's dinner, missed the St. Patrick's Day party completely, and am still waffling on going to Florida tomorrow, though at this point I believe I will make the trip. Still, I'm dealing with so much, and now this. Really, universe?
Mortality
Continuing with the mortality fears and thoughts. Not overwhelming, not consistent, but fundamentally I'm still processing January's news that I'm incurable. I did a graph for the whole genome sequencing presentation which pretty much tells the story:
The Y axis is number of tumors, the X axis is the time of recurrence. I entitled the slide, "Holy Shit, I'm Going to Die!" On account of cancer rarely trends in reverse.
So, yeah, mortality.