Jay Lake: Writer

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[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.

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[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.

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[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.

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[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.

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[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

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[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.)

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[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.

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[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.

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[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.

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[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.

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