October 31.

Finally Heard from Matt this morning. Tired, long delays and a miserably painful procedure.

Also, the new phone charging cable I gave him last night turns out to be crap, so we can't chat until I get there.

No data yet.
...

Went to visit this evening.  Got the power cable. Matt was indeed on stronger pain meds, though there still seemed to be breakthrough pain.  We kept the visit short as he wasn't feeling well. Yes, mostly cancer pain.

But wait, there's more.

     The cyst that he had two years before-- has come back. We are talking about a child's fist sized pustule roughly over where the lymph node in the groin happens to be. Yes, bubonic plague was the first thing that come to mind when I saw it years ago.  Though he had no other symptoms that would suggest the Black Death. I mean, I'm an expert, right? I have the rhyme memorized from childhood.  We had a jump rope routine and everything...

Not to mention having read "Eifelheim"...  *shudder*

You mean, all the rest of this wasn't enough? He's BACK on antibiotics, and has yet another place to be tender. They have have it padded too.

Matt still seems to think he's leaving the hospital on Tuesday.  He doesn't look well enough to leave, but again, what do I know...

FYI: the pustule is really not bubonic plague, I promise. It's just creepy that way. Just in time for Halloween.  Purportedly that's the real reason they did the CAT scan.

As an added bonus, it rained on the trick or treaters this year.  Though they were out in force during the rain... later, when it cleared, no one was out and about. If I hadn't driven by an elementary school during trick or treat time, I would have seen more adults in costume than kids.

Oct 30

I can't backfill anymore. But here's what's happening...

Matt went from ICU to Oncology.

Now, Matt is in Rehab.

Had J and A visit. They made sanity. The came and visited Matt, helped me around the house, etc.
A very good time was had by all, and I will post a supplemental about how awesome they are.

I thought I'd have a nice quiet week to update the blog, clean the house, and figure out next steps.

THEN the Inlaws arrived, and it's been stressful, though not as bad as it could be.  Their crimes extended to dogging me until they had the info they wanted then staying longer than they promised.

As unfortunate as that is, it could have been worse.

I've had some mental issues lately, probably because I'm overwhelmed, and Matt's coming home and I don't feel ready. Also, miscellaneous friendship stuff that is stupid but affects me anyway.

 He did well after the first dose of chemo, really making progress... filling out a bit in the face...  there's been some odd drainage, which the nurses haven't explained to me. If I wasn't getting a big present on Monday that's likely to eat my day, I'd call up the ward and see what time wound care comes for him and see if I can't talk to them about it in more detail.

But that triggered the doctors to do a CAT or CT scan.  Not sure which. Maybe they are the same thing, and different people call it different things.  I've had that happen before.

So he went in tonight.  He didn't look well for a number of reasons, but most of them probably have to do with drinking liquid Barium, being off liquids, and basically feeling like suck in preparation for the procedure.

Oct 21

Ok.

After the misery that was yesterday, and how badly I took things, I just took the day off and kinda lost it.

I should have gone in right in the morning, ignoring the fact I couldn't bring myself to go to the bank.

That was the real sticking issue.

Anyway, when I got there in the evening, Matt was alert, talkative and more cerebral than I'd seen him in a long time. We had a frank discussion about his symptoms, what he's going through and everything.

I am so relieved.

We talked about stuff going back to our first round of radiation and chemo.

I learned some things.  We really connected.

And things went well.  Because it puts this stuff in perspective, and assures me I'm getting the full story. A part of my worry was that I wasn't hearing about everything, and that it was as bad as it looked because of phantom badness lurking beyond my view.  That, if nothing else, will really set me off.

The nurses are more relaxed.  I'm a bit concerned for his lead nurse, I think she could use a vacation and some quality time with people who aren't dying.  It's clearly not affecting her competence yet, but I feel inclined to pray for joy in her life.

We further discussed his case and some answers about his earlier symptoms are not forthcoming yet. We are waiting on an analysis of a cardiologist.  Though I was told that a delay like this is usually a good sign. It means that the tech didn't say, "You know, you REALLY should look at this soon."

Oct 20

We had blood clots.  These are possibly deeper things, not just the usual surface bleeding you normally get from Chemo.  The nurses thought it was clots coming up from the legs, though another source mentioned it could be a deep tear in the bowel region.  Considering where the cancer is... well, I'm still refusing to speculate.
Today was the last day of this round of Chemo, and he looks... bad enough I took most of the 21st off.

Yep, I'm backfilling, but putting things in order so people know when it happened. Otherwise this week would mostly happen all at once. And that would suck.

Furthermore, this weekend I have friends descending on my house with care and love and strong backs to help me put a dent in the horrible pile of necessity that has piled up around my dwelling.

So I'm not alone.

I've also talked to the priest, have an appointment scheduled with a social worker, and the sleep doctor proscribed something to help with those tense moments.

Oh, and failing that, there's a sip of whiskey in the evenings to inform my overactive brain that there IS such a thing as slowing down.  Most people who actually drink would laugh at the amounts, maybe an ounce or two of good Irish.  House certainly wouldn't believe me, but people don't always lie, whatever he says.

I don't consider this a long term solution, but after reading the list of side effects, I think I'd rather be mildly alcoholic than deal with suicidal tendencies on top of all that.

Because cancer still pisses me off so much that giving up is not an option.

I can't promise I won't run myself into the ground with exertion and worry... but self harm is not something I am usually prone to... except when I'm on psychoactive drugs.

But I promise to talk to my doctor, who has been hip deep in my storied medical history for the past five years at least. Based on that, I may see if I can see the shrink (yes, PHD who proscribes psychoactives, for real)  who actually took me off of the drugs I was on before, because he knew I didn't need them.

That is the kind of thinking i really trust right now.

Oct 19.

From teh Facebooks:

More news! Matt Landry's white count is down to 37..WHILE on chemo. That's pretty fantastic news. He feels like crud, but he was actually conscious to chat with me for a bit. The oncologist seems happy and is pushing harder for rehab. Thank you all!

Yes, there is good news.  But I'm still going to bitch because I'm... so tired. I'm never not tired anymore. When I try to rest I fuck up my sleep schedule and a hundred other things.  My attention gets focused on things that can never happen. I'm so distracted and exhausted that writing... even these simple reports--- is a challenge. My body just can't keep up with the pendulum swings of Matt's progress. This morning he wouldn't see me because he felt so poorly, and that has literally never happened before.  But when I saw him later, he looked better and was in good spirits.

October 12.

So we had the PET scan on October 1.

We got the results on October 10.

Matt was sent to the ER after that appointment. He needed an ambulance to take him to the hospital.

Apparently, he was in a great deal of pain, and I hadn't realized it. All he asked for was Tylenol and MC contin.  He still hasn't eaten much.

So what kind of hell was I overseeing for the past few weeks?!?  Does he actually want to die?
I did not come all this way to have him give up on me.

I hope against hope that he really was just so sick it didn't occur to him to think that this was a bad idea.

But on to the results of the PET scan.

The doctor was shocked when he read the results. Keeping in mind that Dr K is a fairly laid back person, as well as representative of the institutional hardiness that's a trademark in that field of medicine.

This thing started in a lymph node or two in the groin, plus the mass on his ass.
Now it's in his lungs, and pretty much every lymph node.  The mass is growing back on his posterior. We are full on stage 4 in the six weeks since radiation and chemo.  Turns out, this is some freakish super rare cancer they didn't even bother looking for. Squamous Cell carcinoma should be dead, dead dead.

                Unholy angels of despair, Batman.

But I'm not giving up yet. This shit has taken too many people I love and I will be here fighting to the last.
I'm too pissed off to consider giving up.

But that doesn't mean I'm not going to be a crazy mess for a while.

And if that weren't enough, the man has an infection of the unknown variety. Yes there's a bladder infection, and some fungal action, but nothing that explains such a high white count. If they don't get this taken care of RIGHT FREEKING NOW, he could die in a matter of days or weeks on the outside.

Dammit, I'm a pessimist by nature. I have had dreams of his death in a number of ways. Before this cancer reared it's ugly mug, I had had a dreams for a solid month telling me how he'd bleed to death in the bed we bought as a wedding gift for ourselves.

I was bathed in his cold sticky blood, and I'd slept right through everything. His body was a skin and bones parody of a model at Madame Truseauds. I remember what it was like holding the waxen rigored corpse and sobbing. Textures and smells were so real in that dream.

But if I can help it I won't let it happen.

 All sorts of wonderful people are  praying for us and offering concrete genuine helps in this time of stress. Apocryphals, you know who you are.  Keep flyin' and keep praying.

I can't thank people enough, without them-- especially Mel who kept badgering me to get help-- God bless you and keep you.  You are a badger with wings and a halo.

To those crazy kids in St Louis who gave me a contingency plan that takes a load off my mind... and plenty of ideas, fun fiction  and practical tips that are life savers.

To the Endocrine specialist who has given me priceless information and counseling when I needed it most...

To Sarah who is like the clan matriarch of this crazy online family I love so much...

To that other doctor in the small rural hospital who is taking time out of her busy schedule to give me supplemental information so I can digest all this...

God bless you all.

And whatever atheists appreciate, insert that, too. I'm too messed up to think about it.