NIH tech support
Yesterday morning, I got a call from NIH tech support. It had been on my to-do list to call them, as I was having trouble accessing their patient portal view the Web. They had noted the failed access attempts in the log, and the tech support person had tracked down the problem and solved it prior to calling to inform me of all this. That is literally the first time in my life I’ve gotten a proactive call from a tech support team about a issue I was having personally. (I’ve occasionally been on the receiving end of calls or notifications of system-wide events, etc., as we probably all have.) Tell me again how the government can’t do anything right?
I had another cold flash Tuesday evening. We intercepted it at the start and headed off the worse, but it still was no fun. Likewise, the last few days I’ve been struggling again with fatigue bordering on the pathological. And the area around my liver has been aching a lot.
Likely as not, this is all just physiological manifestations of stress. Things are going quite well here at NIH, but it’s an enormous amount of information and a lot of tests and procedures all happening at once. Dad says I made it through last week on adrenaline. I guess this is the crash week. However, my oncological hypochondria is in rare form. And in truth, we are getting into the window where I would expect to begin seeing overt physical symptoms of my terminal decline. My palliative care doctor recently suggested that the cold flashes could be from “the evil humors of the cancer”, for example.
So, yeah, the world is running down.
Yesterday at NIH I had an echocardiogram and a pulmonary assessment. I can report that I in fact have both a heart and a brain. Informally, the word was nothing unusual seemed to be present on either test. I will know more formally on Friday, I think, when I see the thoracic surgery group.
Today I have the leukopheresis. This starts at 7:30 am with a surgeon implanting a dual-lumen Hickman catheter in my femoral artery. It pretty much goes downhill from there, I suspect. They’ll be harvesting leukocytes to facilitate the treatment regimen which should commence in early February.
I must confess to a high degree of anxiety regarding this procedure. It’s one I’ve never had before, and I’m not really looking forward to having the catheter implanted. This uneasiness is just my backbrain ticking over, I know, as I’ve experienced far more painful and dangerous things in the clutches of the medical system, but I’m still having a tough morning.
The study I am enrolling in
I still don’t know what the limits are on what I can discuss, but this is some pretty cool science and cutting edge technology. I’m excited to be a part of it. I’ve asked for guidance on how much I can talk about the science, because a lot of you reading will likely be fascinated to hear about it. I will be formally consented tomorrow morning, which puts me in a formal patient relationship with NIH. This has various implications around logistics and timing. More when I can.
The cost of doing this
NIH will pay for my air travel to and from Portland for the different portions of the study. I expect to fly home 1/11, and back around 1/20 for thoracic surgery to have a wedge resection performed on my left lung. Then home around 1/28, and back around 2/5, for a much longer stay with a basket of treatments. As almost all my time here will be in-patient, I don’t have direct housing expense for me. But Lisa Costello and Dad are coming and going with me. The precise air travel dates are unpredictable, and are set somewhere between two days and a week in advance for each arrival and departure, separately, depending on various clinical factors. If you know anything about airfares, you know how utterly ghastly this is from a cost perspective. On top of that, their housing for most of January and February (I’ll be in the hospital 4-5 weeks overall), and our incremental expenses. It’s a mess.
Once I have a better handle on how I can talk about the science, I will probably work with a few folks to put together a science-driven fundraiser. As my recent posts on the costs of cancer hopefully made clear, if you’re in my position, you bleed money. I’ve about tapped out the funds from last January’s Sequence a Science Fiction Writer fundraiser, with my profound thanks to everyone involved. More to come on this as well.