[cancer] Still here, still overwhelmed
Some basic nutrition and lifestyle issues got in the way of well, everything. They still are, but things get better. I had a major rebalancing of my medications, which has made me even more listless and goofy but has restored (more or less) my ability to eat.
Tomorrow I have CT and MRI appointments at NIH. I never mind CTs, but MRIs are the soul of tedium.
Tuesday morning I have a follow up apheresis appointment, my last I believe, then in the afternoon I see my NIH doctors in clinic for an initial analysis of the trial results.
We already know this won’t be a full and final declaration of whether the trial was a success or not and my status going forward. There are number of possible data artefacts both positive and negative. But we hope to get a trend. I’ll come back in mid-May where we should nail it down better.
My anxieties are easy to imagine, though mostly masked by the medication right now. Sorry to be so low-bandwidth, it’s very hard to focus lately.
Posted: 1:55 pm Sun April 13 2014 | Comments(10) |
[cancer] Which way am I going?
Just had another slo-mo meltdown with the gracious Lisa. I am having a very hard time.
Part of the problem right now is we can’t tell which direction I’m going in. Most of my current health issues (other than the food, which is both dominant and a special case of conditioning and attempts at deconditioning) could point to either me slipping further into my terminal decline, or to me responding to the recent experimental immunotherapy protocol. Or both. And we won’t know for sure until mid-May, though it’s possible negative evidence will emerge in my consultations on 4/14 and 4/15.
So, yeah. Am I living or dying? What does all this exhaustion mean? How tired can one human being be?
Hence the lack of blogging and email. Fragile hope is under great duress, and my energy levels are similar to late chemo after six months of treatment. And we just don’t know…
Posted: 10:10 am Fri April 04 2014 | Comments(16) |
[cancer] Still alive, still low bandwidth
Because people keep asking, I am still very low bandwidth on email and social media as explained before. Lisa updates here. I’ll be back when I can focus.
Posted: 4:31 am Fri April 04 2014 | Comments(2) |
[cancer] Quick update re email, comments and social media
As recently discussed here, both my body and my mind are fully occupied with some fairly serious food issues, post-treatment. As such, I am very dilatory about responding to email, blog comments or social media chatter. My apologies. When I am back to full functioning in body and mind, I’ll return to my usual online response times.
Posted: 10:35 am Mon March 31 2014 | Comments(6) |
[cancer|food] How I spend my days
The lead suit slowly improves. So does the giant clamp on my brain. The problem is and continues to be food.
The protocol I was on at NIH had the incidental effect of deconditioning me from being able to eat. Right now we spend most of my waking hours preparing me to eat, tricking me into eating, calming me down when I react to food, and planning how I will eat.
It is a freaking misery. Everything is about food right now, and not in a fun way. I feel ill at my stomach most of the time. And hardly anything works.
This is one reason I have not resumed regular blogging. My entire life right now is focused around managing enough food intake to try to switch from a starvation metabolism to a fat metabolism. You have no idea how all-consuming that can be. Not to mention miserable.
Posted: 4:30 am Sun March 30 2014 | Comments(9) |
[cancer] Struggling with the lead suit, body and mind
I continue to not return email and avoid online chat. This is not a permanent state of affairs, but it will continue for a few days yet. I plead for continued amnesty.
My body continues to be a lead suit, albeit with a few of the plates falling off. This is much like emerging from the back end of months of chemotherapy. That’s not the hard part.
The hard part is the lead suit which encloses my mind. I can still barely single-task. My usual level of everyday multitasking feels like a moonshot project. Focus is a stone bitch. The medications I received on this protocol kicked my mind hard, and I’m still not up off the mat.
Which is scary and sad and difficult to cope with. Especially while the meat-and-and-bone part of me is also so afflicted with lead. I’m trying hard. I’m coming back, I swear. But each step is like climbing a mountain.
Posted: 4:24 am Fri March 28 2014 | Comments(11) |
[cancer|personal] Slowly coming back
That was easily the most brutal medical experience of my life. This I say from a life well populated with brutal medical experiences these past six years.
I’m so physically deconditioned from three weeks in bed and some deeply weird medications that just walking around feels like I’m wearing a lead suit. My thoughts are still slow and single focused and erratic, hence the lack of blogging. But I am back, and I am working my way up.
Hopefully this blog will resume its normal schedule sometime in the next few days. I’ll try to blog retroactively about my experiences on the study protocol, though frankly some of them are already lost to medication haze.
At any rate, it’s me, and I am here once more.
Posted: 2:16 am Thu March 27 2014 | Comments(20) |
[NIH Day 15]
Buy here but winding down now int recovery period. I’m still fat fingering most f what I try to type. This post absolutely included.
Friday midday I received 43.3 billion of my TIL cells infused back to me. A while raft of helper drugs came with, notably IL-2. I lasted 4 doses of iL-2, and was willing to tolerate more, but the doctors thought I was already at risk of serious lung and kidney issues from drug.
More to come I have it, not to mention recovering some of my writing skills. This post took over 30 minutes to compose on a full sized keyboard. Ah, cancer.
Posted: 2:48 am Sun March 16 2014 | Comments(7) |
[cancer] NIH Day 10
Getting overwhelmed fast here. Yesterday was busy and spoon-burning both. An hour of deep science talk with Dr. Tranh about how the genetic selection of my TIL cells was done, and why, was sort of like a Masters degree in a bottle. I will report that when I can. (Notes were taken.) A 75-minute EMDR session to deal with my aggressive emergent food aversion gifted unto me by the cyclophosphamide. Likewise to be described. The massage therapist turning up. And the intensity of treatment dialing up sharply last night, half a day ahead of what I had expected.
Oddly, I got a good nights sleep.
The dance begins in earnest at noon today, with the TIL cell infusion. I do not expect to be able to blog or function on social media effectively after today for a while. I will either be silent, or possibly have Lisa make posts if need be. Expect erratic posting until further notice.
Posted: 4:04 am Fri March 14 2014 | Comments(12) |
[links] Link salad gets busy with the medical crud
Seven Deadly Sins + Math — Hahah. (Via threeoutside.)
Silence Is Now a Luxury Product — A report on the quiet-car-ization of America. (Via AH.)
You’re Drinking the Wrong Kind of Milk — Moo.
Crazy living rock is one of the weirdest creatures we’ve ever seen — I guess it’s a coral, sort of? Weird stuff. (Via scarlettina.)
Alien-Looking Skeleton Poses Medical Mystery — Cool, but, uh, yeah. (Via scarlettina.)
Clinical Whole Genome Sequencing: Not Quite Ready for Prime Time? — (Via AH.)
Do Neutrinos Change Flavor at Night?
Getting the math of the Universe to cancel out — New modification to gravity may explain the cosmological constant.
Who Should Name the Craters on Mars, You or Astronomers? — (Thanks to David Goldman.)
MIT’s New Robotic Fish Can Change Direction As Rapidly As A Real Fish
German Robot Pole Dancers! — Because reasons! (Thanks, I think, danjite.)
Science Graphic of the Week: Bombogenesis, the Most Extreme Weather This Winter — (Thanks to David Goldman.)
Interactive Map Shows Impact of WWII Firebombing of Japan, If It Had Happened on US Soil — Wow… (Via shsilver.)
The Way We Live Now — Yup. You will know that they are Christians by their love.
Oklahoma FOX Affiliate Edited Evolution Out of ‘Cosmos’ By Removing 15 SECONDS of Footage — Exactly why I was appalled to see such a wonderful show come back on such a terrible network. FOX is not the natural home for anything evidence-based, whether’s it’s honestly reported news or actual science.
Ohio State Rep: ‘Public Education In America Is Socialism, What Is The Solution?’ — Conservatives in their own words. Poe’s Law would apply, except speaker intent is clear by his position. By the way, this guy is vice-chair of the Ohio House Education Committee. “Is our children learning?”, to quote another very prominent conservative.
Guns May Soon Be Everywhere in Georgia — Soon gun owners in the state of Georgia may be allowed to pack heat almost anywhere—including K-12 schools, bars, churches, government buildings, and airports. The “Safe Carry Protection Act” (HB 875) would also expand Georgia’s Stand Your Ground statute, the controversial law made famous by the Trayvon Martin killing, which allows armed citizens to defend themselves with deadly force if they believe they are faced with serious physical harm. What could possibly go wrong!?
Republican Family Values — A missive from the Oregon GOP. The Republican Party is proud to be known as the party of liberty. As the party of freedom, we believe that Americans should be free to live their lives as they wish, so long as they do not impede the freedom of others to do so. Therefore they support a gay marriage ban. This doesn’t pass the logic level of a fourth-grade class debate, let alone rise to the basic standards of American citizenship. Conservatives…
Food stamps: Oregon becomes fourth state to avoid farm bill cuts — That’s called compassion, and constituent service. Much less effective at generating more angry white guys than grandstanding against anything that might make Obama look good, but that’s conservative priorities for you. I like living in a (relatively) sane Blue State where the public good can at least sometimes trump partisan self-interest.
Foreign Officials In the Dark About Their Own Spy Agencies’ Cooperation with NSA
?otD: Got IV?
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 8.0 hours (almost solid, some daytime napping)
Body movement: 0 minutes (hall walking to come)
Number of FEMA troops on my block teaching wives how to be submissive: 0
Currently reading: n/a (chemo brain)
Posted: 3:54 am Fri March 14 2014 | Comments(2) |
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