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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] 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.

Jay

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[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…

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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] 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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