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[aftermath] What comes next

I don’t know how much, if at all, I’ll add to this blog now that Jay is gone. But I will continue blogging what’s up with me in my journey into a life without Jay at my blog: No Loss of Momentum.

I know I’m no substitute for Jay, but feel free to come visit me on my blog, or friend me on Facebook.

[cancer] The end has come

Jay passed this morning, June 1 at 5:45. Lisa and friends were with him. He will be missed.

If you want to make a contribution in Jay’s name, please make it to:
Clayton Memorial Medical Fund
P.O. Box 5703
Portland, Oregon 97228

[cancer] Yet another update

The hospice nurse came to visit again yesterday and we talked about the fact that Jay is losing his ability to swallow. Where just a few days ago he could easily take in all the liquid nutrition we’ve been giving him, now he struggles to take in more than a few sips. He does better with water than with other liquids.

Oddly enough, the cough that has been bothering him since after his surgery earlier this year has subsided a bit as the swallowing issue has increased. What that means, I have no idea, but at least he’s a bit more comfortable that way if less comfortable another way. Tiny silver lining.

He’s completely stopped reading email or doing anything else online. That brief window of energy he was having in the morning has closed completely. This means he’s missing the breathtaking memorial that’s going on right now on Facebook. Of course, it also means that he missed the rumors of his passing.

He’s only getting out of his chair for bathroom breaks, but thanks to a friend’s heroic efforts, we now have things set up so he can get onto and off the toilet with more ease.

Thanks to everyone for their unstinting support – it means a great deal, no matter what form it takes.

[cancer] No, Jay is not dead

And anyone who says any different has no idea what they’re talking about.

This will be the place where that sad news will be posted first, so read this blog or check on Jay’s timeline on Facebook or Twitter.

[cancer] Things I forgot in my previous post

Two things I meant to say in my previous post today, and just plain forgot.

The first is that while the NIH treatment didn’t work for Jay, the NIH docs did say that the data they got from his participation will be of great help with future patients. So Jay’s other stated goal of this trial was met: SCIENCE! This pleases Jay.

The second is that while we originally stated that there was a second trial that Jay would participate in if the first didn’t work, the reality is that his condition is so poor now that his participation in that trial would be miraculous. He would have to recover to the point of being almost normal again, and given how the tumors have progressed, I think this is highly unlikely. Not impossible, mind you, but not likely. None of us, the NIH docs included, realized just how debilitating the first trial would be for Jay.

[cancer] Well, the news isn’t good

We heard back from the docs at NIH, and the news isn’t good. The treatment is not working, so they’ve released Jay back to the care of his doctors at OHSU.

We are working with his palliative care doc and a team of hospice workers to make Jay as comfortable as possible for as long as he has. We’re still hoping to build up his strength as much as possible, but that’s the most we are trying to accomplish other than comfort.

People have been asking about visiting Jay. All I can say at this point is: we’re working on it. His energy level is extremely low, and visitors drain him terribly. I think it is this right now that is breaking my heart the most, how this most social and gregarious of men has been drained to the point where a simple conversation is exhausting.

Fuck cancer.

[cancer] Slightly better news

Jay actually ate something today. It wasn’t much, but in the grand scheme of things, it was huge.

I’m hopeful again that we’re finally seeing a climb out of the rigors of the treatment.

Fingers crossed, everybody, that this is a trend, and not just a blip.

CT scan tomorrow and MRI on Monday, which along with the bloodwork done this past Monday constitutes the next set of scans for NIH. More news on those as I know it.

[cancer] Another dreary update

It’s been a discouraging week here.

A little over a week ago, Jay went off the the one drug that helped his appetite but blunted him mentally, and while his cognitive and mental focus have improved dramatically, his appetite has disappeared. He is now completely on a liquid diet, save for 8 grapes a day. I’d estimate that this shift has reduced his daily caloric intake to about 500 calories.

We saw his palliative care doctor at the end of last week and there was some conversation with the NIH doctors as well. The NIH docs recommended moving up the date of Jay’s next scans so that they can tell sooner whether the treatment is having any effect. The reason for this is that the best drugs to help him with the appetite and nausea and cough issues contain steroids, something he’s not allowed to have on the trial.

So if we discover that the NIH treatment is not being effective, then we can move on to these steroid-based drugs and see if they help.

If the NIH treatment turns out to be effective, it’s not clear to me what the next steps are for alleviating Jay’s misery.

We also saw Jay’s home (OHSU) oncologist today as a follow-up from the palliative care doctor visit, and got a prescription for Haldol (recommended by the palliative care doc) to add to Jay’s repertoire of nausea inhibitors.

Jay’s CAT scan also got moved up to this Thursday from next Monday. The MRI is still next Monday.

We spent a couple of hours today at OHSU while Jay got some IV hydration. I asked him if it made him feel any better, and he said not really, but he certainly looked better and was more mobile on the way home.

We’re looking into home health aides, to give me a much-needed break.

So that’s the lay of the land as it stands now.

I don’t know how long it will take us to hear back from the NIH docs once the scans are done, but rest assured I’ll let everyone know as soon as we know anything.

Thanks for all your good thoughts – they are very much appreciated.

[cancer] Latest update

So, things are still pretty grim and quiet on the homefront.

 Jay is still having food issues, and is sleeping almost all the time now.  He wakes up well enough to have a snack or to take his pills, but if he’s in the chair, he’s asleep.

He’s also having issues sleeping at night; I think some of that is physical comfort issues and some of it now is medication withdrawal.

This week he went to a hypnotherapist, which I think did wonders for him, and an acupuncturist. That latter was just this morning, so no way to tell if it had any effect. He’ll continue seeing both of them for the foreseeable future.

After the positive effect he saw from the hypnotherapy and his daily guided meditation from the hypnotherapist, we decided to take him off the anti-nausea drug that makes him so stupid and see how that went. It was going pretty well until today, with his three-times-a-week antibiotic dose.  We’ll see how it goes from here. But this is what’s affecting his sleep, as going off this drug has insomnia as a side effect.

He’s still not eating enough to keep his weight steady, and his appetite has definitely diminished after going off the one med, which is an expected effect.

Still hoping the hypnotherapy especially and the acupuncture will help to release him from the prison of not being able to eat.

More news as we know it …

[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.