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[cancer] Results of first follow-up at NIH

Jay went in for his final apheresis today and we met with the doctors to talk about the results of yesterday’s CT and MRI scans.

To cut to the chase: there were no new tumors present, and some moderate growth of the existing tumors. As we expected (and as the doctors led us to expect), it is too soon to tell whether the protocol treatment has had any effect.
We will be back sometime in mid-May for the second follow-up, at which we hope and expect to learn more.
The apheresis done today was strictly for research purposes; it had no direct treatment effect at all. It’s not clear to me what further research was being done, but we might learn that at our next visit.

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[cancer] Things improving, but slowly and not steadily

Just wanted to send out a update on Jay.

His energy is still low, although I think he’s doing quite well for what he’s been through. Now that we’re at the coast, he’s moving around more; it was difficult to get good exercise at the house we were staying at before. We’re hoping to get Jay down to the boardwalk for a short jaunt sometime during our stay.

 

The food situation continues to be difficult. Some meals are a relative breeze, some are painful beyond measure. It’s literally a bite-to-bite struggle. We’ve changed around his med schedule, and have added ativan and compazine before each meal. These seem to have helped, but since what little progress we’re making is not at all in a straight line, it’s hard to tell.

 

We’re also treating meals as quiet time, as he seems to do better when he’s able to focus completely on the act of eating. We are eating early, when it’s quiet, to try and help that. Being at the coast during the off-season helps with that.

 

I’ve got a couple of other tricks up my sleeve, including having him brush his teeth before each meal so there’s no issue with mouth taste, and putting some vap-o-rub under his nose to cut down on smell issues. Whether any of these things will pan out remains to be seen.

 

If you have advice, please address it to me (radiantlisa at gmail) rather than to Jay. He is still very suggestible around food and eating, and even reading this kind of advice can be devastating to his equilibrium.  And I welcome advice, as I’m rapidly running out of ideas.

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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:
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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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[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.

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[child|photos] Yesterday we went out

Yesterday, [info]the_child was both asymptotically bored, and wanting to do something with her Dad before I go away for another month of cancer treatments. I already knew today (Sunday) was out due to other commitments, so we went out photo safariing.

I frankly wore myself out with just a couple of hours of driving around. But it was important to her. And we had fun, not to mention got in a few good conversations, including at least one parent-child classic for the hormonally charged teen. All good, and she can be wonderful.

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Photos © 2014, B. Lake

Creative Commons License

This work by B. Lake is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

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[religion] Persecuted for righteousness’ sake

Blessed are they which are persecuted for righteousness’ sake: for theirs is the kingdom of heaven.

    — Matthew 5:10

I guess that means that the supporters of Proposition 8, of Kansas 2453, of Arizona House Bill 2153, are just doing their part to see that LGBTQ Americans get into heaven.

Yeah, that must be it.

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