Day 18. (Part 1)

Tuesday.

Matt woke up without pain.  He was happy, awake and chatted quite a bit this morning.
Feeling vindicated. Thank you Rad doctor for noticing his under-reported pain yesterday.
We have a plan for some other issues thanks to that energy that Matt had.

Now I get to visit the TRMN folks this morning before Radiation.

Woot!

Roll Pods!

Day 17.

Monday.

Monday was just busy without really accomplishing anything notable to the outside world.

Radiation. Refill the Pump. Talk with more doctors.

 Go fourth and buy all that stuff I keep forgetting to get.  Get home late, and struggle with sleep.

This is night two of my struggle with anxiety.  It was not so glorious this time around.
However, last night, while shopping, I did experience a brief flash of peace and stability... which was pretty awesome. Not a common feeling in the middle of shopping.  So yeah, Melatonin is some good stuff.  And my overall stress levels have been much more manageable, so we are on the right track.

Matt was hit pretty hard today, though the Rad doctor thought he was having too much pain.

So he doubled Matt's Contin meds... which were sub-clinical for his weight.  That night, we give it to him.

Day 16.

Sunday, Sunday, Sunday.

I got up...
We did Matt's meds. Got him food. Got myself food, fed the cat. (Getting him food is quick and easy. Mine is more complicated, so I start mine then get his then eat.) Mass is going to be 12:30 at St TM.
I wish I knew even one person at the local parishes. All my church friends are in Chicago.

There's hardly anyone my age at StTM, or any of the parishes I get to around here. I'm too much of an outlier, of the sort you don't often see in the Burbs.  Well, at least... not the burbs around here.

I'm 40, married, Catholic and I don't have kids.  Who does that?

No one around here, apparently.

Anyone who veers from the script tends to be looked at with suspicion, or, best case, lumped as "charity case" and not "friendship material". Not to say it didn't happen in the City, but at least there you had enough variety to find those who weren't pod people.

Besides, there are no conservative parishes in the diocese of Gary. Sure, there are parishes saddled with conservative priests, but that's not the same thing.

If I hear "Gather us In" one more time, I think I might kill somebody. Why can't we treat God like God for a change? Do they even Aquinas?!  Can we have reconciliation that lasts more than freaking half hour once a week? Notice we are talking about parishes with thousands of families a piece.  Why am I consistently treated like I'm asking too much?!  The saints would weep, I swear.

Later that day...

Yep. I was dragooned into taking the last gasp mass in this area, from the parish rather infamous for it's weak music.  Yet, today, it didn't suck.  I'll never be quite happy with "Taste and See" but it's not that bad, and that was as close to my rant as they got.

The priest was on point and I felt both humbled and inspired.

Third, I found a parish not far away that has reconciliation four times a week, and an additional three times on Sunday.

I figured out when their English Sunday Mass will be, and plan on attending next week.

Day 15

Saturday

Today is a day of rest. I'm finally catching up on my reading, and we are finally catching a breath.

So It's pretty boring.

As for Matt: tumor is a fraction of it's former self, but sitting down without pain is still an issue. Arguably, the pain issues are accelerating because of the radiation. Ironically that also means it's healing.

As for me:  I'm still dealing with deep seated tiredness issues, and straining to find ways to recoup some deep reserves energy.  Most of my classical methods require more energy and concentration than I have at the moment.

Oh, and I'm also catching up on some of those tasks that have been dropped for the past month while I dashed around in emergency mode. It's going slower than I'd like, but until my reserves are refilled at least a little, that's probably prudent.

And thanks to friend M, I talked to a friend, Dr. N.  Okay, he's Dr N in a month. But still.
He suggested some things I could do for sleep.  Thank you Jesus.  And Thank you, Dr. N.  Turns out my local "open late grocery" with the seemingly overdeveloped vitamin/supplement section does not  have what he recommended, but there is always tomorrow.  And I will make an exception for my usual rule to avoid shopping on Sunday. If the Sunshine co-op on steroids doesn't have it, the GNC will. I think both of those are open.

But there is another bene for going out tonight to look for things.  I got yogurt. And that is the first time since we got home that Matt has truly been interested in food.  WIN!  That was a Dr. N suggestion I should have thought of, to be honest.  But that's a portion of what doctors do... remind you of the things you should know that seem less important than  CANCER! CANCER! CANCER!

When in fact, it's those little things that make it possible to get through something like this.

Day 14

Friday.  (Sorry about the delay. Soooo tired.)
Matt came home today. Even survived the going to the Chemo place, pain sweat and all.  We came home with the pump.  Then I went out for food, then for groceries, then home.  Now Matt wants a warmer blanket. A sign of the apocalypse?  No, just chemo. (will be updated with more detail soon)

Day 13 pt 2.

I visited him late. Learned a lot, but didn't retain much as I was already tired, preparing the house for his return. This time it was an adventure in laundry making... that didn't flood my basement or involve a Kafkaesque trip to the landromat.

It was a nailbiter, but the basement is dry. Hallelujah, hallelujah.

I discover he's coming home tomorrow.

Considering how groggy he is, this is a good thing. He just got his first bit of the second stage chemo thing today.  Knocked him right out.

But I got home and could not sleep.

Day 13. (Part 1)

Thursday. Part I.

Maybe he will come home today, maybe he won't.

Radiation was early, even before I got up.

But now we hear that he's getting more blood. Truly, Matt's vampire heritage is showing.  This is truly odd, considering he hasn't had bleed problems -- that I know of--- in quite a while.

   Matt thinks there's too much going on for him to come home before evening, if he leaves today at all.  It's just a matter of me getting as much done as I can before the decision is made.

Day 12.

Wednesday.

So tired. Got up late, plenty of sleep thanks to Dr Benedryl.

I didn't do much other than some cleaning, go clothes shopping, and visit Matt. But soooo tired.

So now we hear the blood cultures were negative. He went up to oncology tonight. They are going to start his Chemo under observation tonight.

He's on the 5th floor now. He may come home tomorrow.

Day 11

Next day I am still tired. Need a bit more Benadryl, make the mistake of taking 2.

I am a zombie for the rest of the day. I manage to get myself the cat fed and a number of errands done. But run late for the Rad appointment. After be is dropped off, I go get food. I have to, before I hit a wall. Then a few errands, then call for Matt's food. he has to eat something, and this simple option seems idea.

So then we have to see the doctor again to get the chemo. I'd thought we'd have plenty of time to make a brief stop on the way, but no dice. We go straight there, and I figure that I'll just drop him off and pick up the food. Except he's not doing well, and I realize I cannot leave him alone.

The time in the waiting room is very stressful, and Matt isn't taking it well.

Everything seems to be okay once I actually get him in to see the doctors. After the nurses seem satisfied with what they see, and are getting him set up for chemo, I go out to pick up the food.

I come back. Everyone is still standing around, and Matt looks even paler than when I saw him before.

But the quick labs came back when I was gone, and now they refuse to do chemo. He's too sick, he has an infection. They tell me to take him to the ER. I suddenly realize that he hasn't eaten all day, and it was my fault.

But I did have a rice crispy treat in the car, a nice chunky big one. I could give it to him to eat.

Things got confusing, and Matt was saying he'd not have time to eat... and many other worries. I told him that his job was not to think, his job was to eat. I would do the thinking at least until we got him to the hospital again.

The NP also gave him a big chilled bottle of water. He thought it was luke warm when to my touch it was ice cold.

We eventually made it into the hospital, and the doctor told us he'd do his best to keep Matt out of ICU. That way he didn't get a foley. Because catheters suck. Especially for Matt for various reasons.

He didn't sleep the whole time he had one in, for example. Three days is a long time to go without sleep.

I picked up some stuff and came back, and by then he already had a room.

Then I came home and crashed. More Benedryl and a Tylonol. Hopefully any other disasters can wait until morning.

Day 10.

Matt tells me he's coming home. so I get things ready.

Change sheets. Clear junk from  the bedroom. Got it all done. Then got breakfast, fed and drugged the cat. Then I had to find out where to get surgical dressings I called Pharmacy after Pharmacy. A lot of people didn't even know what I was asking for.

Then I find one place... Flunkvale Pharmacy, that has everything I need. But I need a prescription to even get enough to get going with. Of course the only way I could find this out was by showing up.

So I just went over to the hospital and insisted on getting a full compliment of dressings. We were set up, and gleefully went home.

We got food, and I went to get some last minute emergency stuff. Then as I am drifting off to sleep, I realize my throat is thick and my lips are puffy. I must have an allergic reaction. So I get up and stumble down to the kitchen praying I can find the Benadryl.

My prayers were answered. I took some, and fell asleep for a whole eight hours. It's the good stuff.

9.5

Sunday Night.

They are moving him back to Oncology tonight. So he's back to a normal room. Got that heart issue settled and the bleeding under control. Probably means his strength is up, too.
Can't wait to see him tomorrow.

Day 7, 8, ...9

Yeah, it's been a while.


I know what you are thinking... that so much is happening that I haven't had time to post.  Yes, I've been busy catching up on stuff I've neglected during this extended emergency mode.  Also, I needed time to process and simply haven't had it until today.

They did get him off that floor, with a device that looked like a Siamese twin folding chair, with two sides that fold the opposide direction that closed around him, and he was able to be carted out of the bathroom and into his bed. Then they went into commando cleaning mode, and set him up with more blood and saline and a few other things.  I just sat there and watched them work. I felt fine, but empty. I thought I was reasonably okay, but now I wonder if I wasn't' in shock. I got a good look at how much of the tumor had disappeared -- about a third of it, and that took a bit to process.

Then I taught the nurses of yet another floor how to dress his wounds.  I'm flattered they trust me with it, considering I was the one with the bleed. But oen of the other nurses suggested that the bleed was not something I had any control over, and that they'd had similar problems on the floor. My dressing was better than the paramedic who brought him to the hospital, and we are taling about a 10 year vetran who knew how to deal with trauma. And that's a nurse saying this.

That night, I got lost trying to get out of the hospital again.  Fun times.

After that, there was a lot of ICU action, but mostly all about Matt getting off his catheter.

He was there for two and a half days. he was mostly drugged out and I was a bit nuts. He had to be drugged because of the catheter. Probably also to stem the blood loss until they got that under control. They gave him more radiation but halted the chemo so he could get his strength up.  They gave him copious amounts of blood until the radiation slowly slowed and finally stopped the bleeding.

Then he went through a period where he discovered he was not as strong as he remembered.  He had a few smaller incidents, but nothing like the fall.

Now he's on IMCU upgraded from ICU but still under monitoring. As an added bonus he is capable of going to the bathroom by himself. But they had to give him beta blockers, colase and other fun things.

I've been running around taking care of personal things for the past few days, visiting him when I have time.

His back is slowly getting better. The patch is helping. I'm starting to get at the end of my rope. Sunday has just been one big day of rest for me, a chance to goof off on FB and catch up on reading, as well as get some dishes done.  I really should visit him today. Perhaps I will have more news.

Matt is mostly groggy, with a bit of cranky, because he's in pain, and doesn't hold well with being confined and without privacy.

he thinks they are moving him up to the fifth floor  (Back where he was when the fall happened) today or tomorrow.  That's an improvement.

And less painkillers today. Hooray!  And I get caught up in one post. There will probably be an amendment because I'm sure I've forgotten something.

And hey, I actually did something that wasn't connected with one or two degrees of separation with my hubby's health or the other disaster going on simultaneously.

Go team.

Day 6.

Wednesday.

Running late after being hopelessly self indulgent.  I took a long shower. I ate breakfast at a dinner-- even had pancakes.  Yes, I somehow managed to get lucky enough to live in an area with a diner that makes pancakes *I* can eat. Woo hoo. Then I ran an errand or two and went to the hospital, fully intending to get paperwork done that morning, to take to the court house this afternoon.

Insert crazed sarcastic laughter here.  Plans don't survive contact with the enemy, and Crazy Murphy was in evidence today.

Turns out, Matt was drugged due to pain.  He was in and out of consciousness, and when he was conscious he was not really in a state to do anything. He was excited, because the doctor was telling him he could sit up today, and he WANTED him to.  This made him very happy. "Sit" is the most magical word in the human language!" He told me. IN that spirit, I brought all three of his doughnut seat cushions-- even the square one.

By the time I get to the hospital, the reason for the pain is gone, and he has been taken off the pain killers, but they are still wearing off. He gets a shower and to actually get out of bed for the first time since Sunday.

So he goes into shower and settle down to read.

Shower happens. He gets out of the shower.  I hear him pad over to the toilet. Then there's a slip sliding sound and a thump.  Matt starts screaming incoherently, then cries out for help.

It takes a second, before my body engages. I'd almost dozed off and I'm feeling fuzzy headed. I go outside and look around, a tech happens by but doesn't seem that concerned. I tell her Matt fell in the shower, and the tech casually peers in. She pales and refuses to let me into the bathroom, or even to see what happened. she makes sure I stay seated inside the room, out of sight of the event and rushes toward the nursing station at a dead run. Another tech materializes to make sure I don't look into the bathroom. She talks to Matt through the door but averts her gaze.

I go from a panic to a dead calm. At some level I realize there is nothing I can do... and I am in the one place where there is a whole staff of people who do just that.   I can't really move from my chair anyway, my limbs are rubbery and full of concrete.   I can still hear Matt screaming. Alarms are going off, now.

 The next thing I know there are at least six nurses in blue rushing into the bathroom.  Then the group stops, stares, then retreats. They huddle. They ask him a series of questions that seem moronic and inane.  Things about if he lost consciousness, if he felt any pain, how he feels, where it hurts, if he can move. Even before they get him off the ground, they are taking his blood pressure.  Slowly it becomes clear that this is not a stupid thing at all... I'm just really out of it and not thinking clearly. His blood pressure had fallen through the floor while he was in the shower. He must have lost blood.. and maybe a bit of his tumor.

I mean to say, 77/58.

He says he can move, but not steadily. He can't get a grip on the slick wet floor, and he's shaky.  "Oh God, I shouldn't look in that direction!" is the one thing I clearly remember him saying.  They eventually get him on his knees, and bring a strange mechanical machine that is unpowered. Its sort of like a chair with a built in fulcrum. He is able to sit by leaning forward into the device and it closes around him, and they can wheel him up and out of the bathroom. They have covered him with a sheet and dump him on the bed.

Matt is clearly in a lot of pain. He starts crying and apologizing to me. I lay my hand lightly on his arm and he screams in pain.  I can't even comfort him physically. So I stand over him and take an extended period doing my best to offer comfort.

Day 5, Part II (abridged)

Tuesday, Continued.

Again I went to visit Matt late.  He was groggy but helpful.

 While I was there, he was moved to oncology! Hooray!

Found out he had no transfusions on day five, so the bleeding must be under control... FINALLY.

But I'm stressed out about the papers I need to fill out. I went there, but didn't really have the concentration or the umph needed to cope. I fell asleep in my chair, then jolted awake, wired.

That, my friend, is how subtle a panic attack can be.  I had no idea I was even having one.

That is, until I was dealing with crushing pain in my right arm, a stabbing pain in my eye, and pressure in my chest that didn't brook ignoring. Oh, and I was passing the ER on my way out of the hospital.  So...
why not go in for a social visit?

Yep, discovered that my heart is fine, and my vitals are approaching magnificent. But my anxiety is through the roof, and I should do something about that.

Ya think?

The arm is from some neck tension gone horribly awry. Not that this at all surprising, considering scoliosis and arthritis... and I'm a vetran at all of this stuff.

  Better safe than sorry.

 Extra special thanks to J for keeping my relative sanity up while waiting for the ER to figure things out.

Day 5.

I sleep in. I can't help it. I need the sleep.

I also have unrelated paperwork that will help us keep our house during these exciting events.

So I read some Honor Harrington.

But I eventually get up, make sure Matt is okay, and get some FB time, and also find the paperwork. Almost conicidentally. I get some stuff around the house done, and...

Don't really want to eat lunch. This is a bad idea.

So I made it anyway. Now I'm lost in the wonderful world of filling out government forms, while trying to extract information from a guy stuck in ICU-- under sedation.

Fun times.

Bullitens posted as events warrant.

Day 4.

Monday.

He's still in ICU. I'm groggy. I get up early and take his laptop to him, so he can make his 9 am meeting.

Except... it doesn't work out that way. sure, I get out of bed at 7, but I am tired. Bone deep, painfully tired. My joints ache, and I'm feeling sensitive to light.  I sit down to wait for my breakfast and discover I've spent an hour chatting on FB. I feel guilty.  But I finally get my food, eat it, and get on my way, with everything... except Edd, the bear I got him on his first hospital visit.

Matt is drugged out, but still bleeding.  We chat a bit, but he's in and out of consciousness. Eventually he gets a bit clearer, and tells me to go get food, and get some sleep.

I suddenly realize he's right... and I'm the one not on Delauded.

I don't remember mostly what happened today, save I got sleep.

Then I went for Indian food, and did a lightening grocery run.  But I was delayed and the rain didn't make things easier.

So I visited him late. Around 8:46... Just after the entrances closed.

 I've been sleeping on average 4 hours a night-- 5 being a good night. I'd forgotten about the time until I appeared at the hospital.  So I went in at the ER entrance, hoping I could make good on my promise to see him that evening. He was feeling stressed and it seemed bad to just leave him.

The ER nurses were awesome, conspiring to get me into ICU after hours.
Yes, the bleeding is still going on.  He's been through 4 units of blood since he arrived at midnight on Sunday.
Yet he had some wonderful news-- a cardiac doctor came up with a procedure that would work kind of like an embolism on the blood circulation system inside the tumor. He could probably stop the tumor bleed that way. Said heart surgeon was worried about complications on later surgical options, but from what Matt was able to gather from our cancer surgeon, those are less of an issue than the heart doctor would know.  We are civilians in these matters, but Matt is good at reading people, especially experts in stuff he doesn't know about.  It's helpful in his system admin job.

The radiation doctor (RD for short) still thinks that the bleed will stop from Radiation alone. He got one shot today around 2.  He was flummoxed and out of it for the rest of the day. Though that was pain from another source.

Foot note: The Blackhawks won the  Stanley Cup toinght.  I watched it on TV while wandering around trying to leave the hospital.

When I get home, I hear gunfire.  My first thought is... oh, great, so the riots in Cleveland have made their way to Gary? Is Chicago burning and I've just been distracted?!

Nope. Folks are shooting in the air in celebration. And, setting off fireworks in the rain.   Because, hockey fans. No small thing such as the weather is going to defer some hard core celebrations.  Go team!

And seriously, congratulations Chicago hockey fans. I was just cranky and startled. Promise.

Day 3.

We were just chatting about what a great day it was, while prepping for the last dressing change of the day. (No, I don't have pictures. Rejoice and be glad.)

Then a bleed started without any provocation on my part. At a notably difficult area to put pressure on.
After a few minutes of putting pressure on the thing...I notice it's not getting any better.
So I call the Ambulance. They came. They finally made it upstairs.  Scooter's missing fur made them very uncomfortable. In his panic (OMG PEOPLE! NO NO, SAVE ME MOMMY!) He was meowing at the EMT very loudly. Maybe thinking she was me?  I didn't see what happened, but she was convinced he was going to attack her.  Knowing how he can get at the vet's office, I can't really discount her statement. I scooped him up and isolated him without incident. We got him into the ER by around 1:30 ish. I left around 3:30....

And now I'm headed back before 9 hopefully.  He's now in ICU at Hospital 2.

Day 2.

Sunday
We had an early morning bleed out. I got it under control with a little pressure and moisture, so I didn't think much of it.
So tired I spaced and did not make the 10 am mass.
I did NOT want to wait until the 12:00... or go to any of the parishes that do an 11 am.
But I did anyway.  It wasn't so bad. I wish they had... different tastes for music, shall we say.
It shouldn't be an issue, and I honestly didn't hink it would bother me with such world shattering issues to deal with at home.

Somehow, it made that worse.  I've had "We are Called" stuck in my head all day. There's nothing offensive about it, nothing against God, but the insipid melody grates on my nerves. I had to fight falling asleep-- or was it passing out?-- during homily.  Did I mention that today's priest has a delivery reminiscent of Billy Mays?  His voice is curiously not grating, but he is not much affected when the mics fade out.


At any rate, I was seriously fading by the time I got to my lunch destination. They no longer make duck.  Fortunately, I wasn't faint and cranky enough to walk out.  The lamb was a lot better than I remembered it.
Kudos to the new chef.  But fix that duck problem, STAT.

Things went well until... around midnight.

Day 1.

Some History

I admit I did not start this blog on the day we got the diagnosis.  It has already been two weeks since then. Mostly what they treated was blood loss. In fact, Hospital II happened because the Paramedic claimed he was concerned Matt would bleed out before we'd make it to the Hospital further out.

Fortunately, they figured it out. And Matt had internet access to spare his sanity. Did I mention he got work done while in the hospital?  It was a bit easier after two... or was it three bags of blood?
The schedule is right, his pallor is correct, but he really is too hairy to be a vampire.

It would be interesting to see what chemo and radiation would do to a vampire. [scribbles notes] Ahem. Now, where was I?  On Thursday he had his first chemo, the big bad where I had to stay at least 5 feet away and not touch any bodily fluids for at least 24 hours. They tossed me out of the room when they did his dressings.  Not to give anybody a break, then they put him down for a port placement, and he is wired for sound and video.  On the good side, he doesn't need to be constantly prodded for blood anymore. So... part Vampire, part cyborg?  I wonder if he's USB2 compatible...

Oh, and then they hit him with Rads.  Matt says it looks just like what you'd expect Science Fiction writers to come up with when describing nuclear medicine of The Future. Robotic arms, green lasers aiming in non obvious directions, futuristic beeping sounds and everything.  Matt enthused about this, and even caught one of the guys giving him that knowing grin. Later he admitted that jobs day with his children is, actually pretty awesome.  After all, he get to shoot Radioactive Beams at people-- saving their lives, and make a living at it!  That's almost as good as chucking explosives out the windows of helicopters over mountain ranges to trigger avalanches.  Or identifying as an Abrams Tank.  ;)

Then, on Friday, the computers were completely off line. The Rad Radiation guys were canceled. And we waited like Rick and Ilsa for Matt to go home. I'd been warned that Chemo and Rads would affect him strongly...

And this completely leaves out my oddessy with laundry, losing my dark load with the socks... I'm sure I did more than the ill fated sheet washing expedition and visit Matt, but the rest is frankly a blur.

Friday night was a very challenging thing.  But we got through it. Most of it was crap going on in my head, after seeing him so tired he seemed child like. I was a bit worried I wouldn't get him back until after the (approximately)  six weeks of treatment.

This all changed after 16 hours of sleep, and an infusion of sanity.  Yaay marriage!

This is his first complete day home from Hospital II, complete with cancer diagnosis.

Today is a Saturday.  Matt had our full on contingency talk, and I was greatly relieved about everything.  Then the bleeding started again. Fortunately, nothing like what we'd seen that sent him to the hospital, but alarming enough to be very draining in more ways than one.

  The rest of the day was equally divided between shopping (and going back for forgotten things) and dealing with bloody surgery grade dressings.  Then I had to call my folks and tell them what has been going on for the past two weeks, and remind my brother of a project with a friend of mine...

And hopefully that will still work out. The whole family is sick... and having to do both at the same time was sub-optimal to say the least.  I feel like I let a friend down, and I really, really hate that.  And no, I don't want to use the handy excuses to hand.  Because it seems manipulative and mean.

We'll see what Sunday brings.

The funny thing is, what happened today doesn't seem like much. But living it is a different story.