[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.

Jay

[cancer] Jay is free!

Jay’s stay in the family lodge last night went well, and he was discharged from NIH this morning.  He now has 2 new medic-alert bracelets to add to his set: one warning against steroid use and the other requires all blood products to be irradiated.

We are at the hotel in Rockville for the next couple of days, then on to the rented room in Bethesda until his follow-up 4/14-4/15.

 

Jay’s (step)mom arrives today, so we’ll be spending some time with her and his dad before they both go back to Portland.

 

Jay is extremely worn out but seems in good spirits.

 

(I wanted to entitle this post “Dobby is free!” but since no one gave Jay an article of clothing, this didn’t seem quite right.)

[cancer] Freedom pending?

It’s been a big day here at NIH. I don’t know all the details that led up to it all, but Joe took Jay off-campus for what Jay called a qualified success of a lunch date.

Jay’s now exhausted from being out and about, but the meal was successful.

His blood counts are good enough that the doctors want to discharge him tomorrow. He & I are going to spend the night at the family lodge, and if that goes well, then discharge is likely.

We still need to ask the doctors about his discharge meds and what his discharge care will be like, so more on that as we know it.

Through Michael’s (Jay’s brother) connections and Joe’s efforts to contact the landlady, Jay & I have found a room to rent in a house not too far off-campus for the time between his discharge and his first follow-up, which will be 4/14-4/15. It will be nice to be out of institutional living for both of us. We should move into that room on Friday.

As I type, Jay’s undergoing acupuncture to try and treat the food issue, which already seems to be on its way out. But we figured it wouldn’t hurt for him to give it a try anyway. Now the acupuncturist is trying to treat Jay’s cough – fingers crossed. Joe and the acupuncturist are having a lovely conversation in her native language.

[cancer] Alert and active

Jay is much more alert today, and will likely soon be out of email and social media jail. We put him there to keep him from “drunk” blogging/emailing/tweeting/texting.

His blood numbers are starting to come up, and the doctors are pleased.  He had a blood transfusion earlier in the week and platelets a couple of times.  We still haven’t seen neutrophil numbers, but his white cell count and his platelets are improving.

Jay continues to have issues with the cough and with eating, although both things are improving.  Today he’s actually eaten two things and kept them both down with no problems.  His lower GI is waking up, too, which is a very good sign.  But his upper GI is still very suggestible, and the mere mention or thought of food or the presence of food can  still give him coughing or retching fits.

The coughing fits have given him what Jay calls demon eyes, as blood vessels in his eyes have burst due to the ferocity of the cough. There’s some improvement on that front, too, which I’m assuming is due to the improved platelet count.

His hair started falling out with a vengeance yesterday, so one of the staff came in and shaved his head, with this result:
 IMG_3044

 

It’s unlikely that he would be eligible for release before 3/31. One of the things that has come up is that his first follow-up appointment is for early- to mid-April. Given the rate of Jay’s recovery and his ongoing issues with eating, we might end up staying through until the follow-up, rather than going home and coming back.

[cancer] Making recovery progress

Jay’s doing better today, making slow progress toward recovery from all that this protocol has put his body through.

His cough is much improved, especially after one of the nurses figured out that he could take a cough syrup without codeine.  That made a huge difference.

He’s been taking ativan for nausea during the day, which drug has been knocking him out, but this morning he decided to skip that, so he’s been more focused and present and funny-snarky as a result. He still falls asleep at the drop of a hat, but is more here when he’s awake than he’s been in days.

This improvement can be best seen in his foray up to the NIH patient library, where he donated some of his works.

On the down side, his hair is finally starting to fall out, leaving his pillow looking like a large, dark cat slept on it. I held out a handful of hair to him at one point this morning and asked if we could make a new Jay if we gathered enough hair.  Himself was not amused, but I was.

[cancer] Jay quiescent

Just wanted to post a quick update on Jay. He had a low-grade fever overnight, which of course had the doctors concerned, but it broke in the wee hours. They’re still keeping a close eye on him, and he’s mostly sleeping, which is why he hasn’t blogged today.

At one point this morning he promised not to multi-task.  I laughed and said he shouldn’t even be trying to task.  Hence this post from me.

Sleepy Jay says “Hello, world”.  He must be dreaming of programming.

[trave] In the USA

Depends om hour ponit of view.

Flying from DCA (where I’ve been treated) to PDX (where I live) is like flying than the mileage from London to Eastern Turkmenistan. I simply could not find a simpler “Europe is This Small” illustration. while DC and Portland aren’t nearest the farthest apart in the Lower Forty-eight. Throw in Alaska, Hawaii, Purto Rico, U.s Virgin Islands, American Samoa and the odd bits of rick here there are everywhere, you go a long way in this country on domestic flight.

Which is my have had so much trouble flying these pat two go-rounds. Sitting coach for 5-6 hours is barking mad even with anyone’s knees, let alone my various surgical and digestive issues.

It a running gag that Europeans have history while Americans have geography. I just hope yose guys across te pond are smarter.

[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.

[cancer] Quick update on Jay

He’s been sleeping soundly, and is awake at the moment getting vitals done. He’s survived 5 3 doses of IL-2. Awaiting news from the doctors about continuing the dosing.

Edited later to fix my misunderstanding of the number of doses.

[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.

Overwhelming.

[links] Link salad gets busy with the medical crud

Seven Deadly Sins + Math — Hahah. (Via [info]threeoutside.)

Silence Is Now a Luxury ProductA 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 [info]scarlettina.)

Alien-Looking Skeleton Poses Medical Mystery — Cool, but, uh, yeah. (Via [info]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 outNew 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, [info]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 [info]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 GeorgiaSoon 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?


3/14/2014
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)
Weight: n/a
Number of FEMA troops on my block teaching wives how to be submissive: 0
Currently reading: n/a (chemo brain)