Errata

I have several long posts that discuss Matt's Last Days.  Unfortunatley, during that ordeal I was also experiencing technical difficulties, including losing my cell phone and having to rely on a very flaky tablet which is since pining for the fjords. Let's not even talk about the problems I have had with the Blogger Ap. It will take me a day or so to get the material transferred OFF the broken Blogger Ap on my phone and back here. Sorry for your inconvenience.

Nov 11.

This is it. 

Matt has been given the news that he has a few weeks left. They've done everything they can. The cancer is progressing and the previous chemo and radiation didn't make the dent. 

His breathing is labored, his white count is still high. (126000+ now)  He has deteriorated more in the past few days than he has in months combined.

His vaunted agressive oncologist was going to get a second biopsy because the last one didn't get enough cells to tell what kind of cancer it is, or rather we do sorta know but we don't know what kind of chemo will treat it.  But they aren't sure he'd make it thorugh the biopsy.

Even if he did, it would take two weeks to get the results. We don't have that kind of time.

YES, doctors can be wrong.

We're praying for a miracle. We are  praying for time to do the things that Matt needs to do.

I'm exhausted. 

I'm pissed.  

I'm devastated. 

Friends are en route.  I love you all.

Nov 10. Part II

So I had this awkward conversation with the Social Worker about her suggesting that Matt may need a care facility after he is released from the hospital. She said flat out that they weren't even considering discharge at this time, but they thought I should start thinking about this if it is needed.

Watching him breathe is still painful.

Treatment for the lung thing is scheduled for tomorrow, if I remember correctly. He's also getting radiation. His last treatment is Friday.

White count is even higher than I thought... 110  (or 110,000) They are switching back to the old antibiotic because the new one has zero effect.

Nov. 10

I've been a bit stressed.  Sorry about the lack of update.

HE's been moved out of ICU and back into Oncology.  He's having more trouble breathing and having difficulty adjusting to the new pain regimen. They can't give him the same pain meds he needs because he's not in acute care anymore (INSERT RANT ABOUT CANCER WARDS BEING UNABLE TO DO ADEQUATE PAIN MANAGEMENT).  Hopefully they'll figure something out.

But he's got good people and we all know each other. And they can give him sleep aids.

They are talking about experimental treatment, and there are two new oncologists, not just one.

Turns out the cancer cells in his lungs are different than what's growing elsewhere. His white count is still high, and they are trying new antibiotics.

They are still waiting for results for the biopsy.

I had a good talk with the Aunt in question and so I have some help getting information out to family. But my cell phone is now in michigan, and so my ability to run my life has become a lot harder. 

Also...

I may be moving very soon.  

I woke up too early this morning thanks to a panic attack.  Mostly health related paranoia. I'll live.

Nov 5.

Yesterday I went to go see Matt.
Not a whole lot was said, except that he wants his mother to come as well as his aunt.

Um, okay.

Today, he told me not to come because he felt awful...

They did a localized CAT scan. It was an ordeal that has utterly left him exhausted.

But... now they think that the stuff in his lungs isn't cancer but fluid.

I'm still processing this. I know it's fantastic news, but I'm still... numb or something.
I went out of my way to express heartfelt thanks in front of the Blessed Sacrament.
I even got an hour in, thanks be to the monks that run the place.

Nov 3.

This is a red letter day for furry rodentia living in my house.  

YOU. WILL. DIE.

That is all.

UPDATE: Info you actually came here to read...

Matt has a  new doctor on his team who has some ideas about what to do next.

The cyst/swollen lymph node is starting to shrink, even without radiation.  This is a good sign.

On the "other news" front, they had to give him another unit of blood. He was VERY pale when I saw him

at 2:00 or thereabouts. Also tired and out of it. He was looking much better when I came back, which was shortly after the blood was administered.  Apparently his platelets are low. And it is thought that this is a source of many of his problems.  I suspect this has Significance to oncologists. 

What it means?

Not so sure.  It is hard to ignore that various hospital-ly interventions are required to keep him looking

and thinking well.  Generally they don't put someone back in ICU because one is doing better.

He's also on oxygen now.  I don't know for how long,but his OX levels were a bit low.  He is now much perkier than when I saw him before, but still pretty tired. He did't sleep well last night, and he still seems exhausted from PT.

If that weren't enough, his aunt... AND his mother are coming back this weekend.

I'm happy to see his aunt, who is Matt's favorite relative and all around awesome lady.   But... I reacted vociferously to his mother "not" inviting herself along.  When I first reported this news to Matt, he seemed like he was on the same page and told me he'd take care of it so we can spend some quality time with his favorite aunt.

But... now he's changed his mind and swears this is a good thing. That he can-- or at least should-- deal with both of them at the same time. That this will somehow give us more slack in future. 

 Um, really? 

 I'm NOT pleased by this. 

But, it is my duty to execute his wishes, and not alter them for my comfort.  I'm also not getting "roll over" vibes from him, so there's that.

She implied in her last letter that there is still information she wants/needs but I've pretty much told her all that I know.  *shrug*

Here we go again.

Nov 2.

Matt's NOT being sent home today.  Yes, we are shocked.

Friends with medical bent said so long before it was a confirmed rumor.

At this time we don't know when he is being discharged, but we do know he is on antibiotics until November 8, (That would be, our 7th Anniversary) and they are inter-venous at this time. We've heard rumors they will put him on pills (which he hates) and, for various reasons, he has trouble taking pills.

Matt is not being discharged util he's been evaluated for surgery.  Second, his oncology care is being transferred to Dr Z, who was our radiation oncologist. This is happy news, as this man we trust to guide us to Hell and back, let alone oversee Matt's treatment. This is the very excellent doctor who kept a good eye on us while he was getting radiation treatment.

Rumor has it he MIGHT be transferred to Oncology floor, as he is pretty much done with Rehab. Performance wise, they give him a gold star.
....

UPDATE: They are sending him to IMCU. So... second floor. Wait, did they mean IMCV?  Okay, bad Latin Numerals joke.

Just FYI: your generous donations provided me one super well cleaned room. The bedroom is now done outside of reorganization. The carpets haven't looked that nice since... ever. I don't think they were that nice when we moved in.  And... did I mention clear surface areas? Who knew?

This means I have the energy to clean the kitchen and his bathroom sufficiently he can bathe himself.
That is a treasure beyond rubies. Thank you all, and especially shout outs to J & A for taking time out of already insane busy schedules to take care of me, and also help show that this was not insurmountable-- and to apply therapeutic ass kickings when necessary.

While we are handing out thanks, I should also thank JK, MB, KW, and the Evil but Beautiful Space Princess for the all-consuming task of keeping me out of the insane asylum.  Special thanks to DW, for keeping an eye on my wall, and SO for poking me to update this thing again.

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.

Sep 16.

We did go to the doctor. The news on progress was not as I'd hoped, but at least we haven't stepped back.
Doctors are not worried about meds, but we are going with the current plan.
The goal is now to get Matt eating again.

Wish me luck.

Also, I'm trying to get onto an actual sleep schedule instead of ... whatever it is I'm doing lately.
I still think I want to send this body with sleep requirement back for a better model.

Unfortunately, I forgot to ask about a pain specialist.  It was not a good day when I was there, so even my extensive notes about what we needed to talk about didn't help much.

Sept 12.

We have turned the corner of our  adventures in delirium. He's sleeping a lot today, and though our conversations are a bit...weird, they aren't "my hovercraft is full of eels" weird.

So I can relax a bit.

Better news, he's talking about improvements and things he wants in his life he hasn't cared about

since... well, for years. So I wonder if that pall of apathy was actually cancer related.

Since this cancer -- as visually insane as it was -- actually started in the lymph node near his groin. That means endocrine involvement, which translates to possible witchcraft.  :-)

In other news, at long last I'm on tranquilizers for sleep purposes.  OMG what a difference. At first things were a little odd symptoms wise, but that seems to be receding. And I suddenly want to write again.  

I actually wrote a thoughtful article on my other blog.

 Will wonders never cease?

I'm still emotionally fragile,  actually more so than I was. Getting sleep means I can feel my emotions again. 

That makes things harder, but... better.  No I can't explain why yet, or even demonstrate it, but it's true anyway. I am starting to actually miss my friends, and going out and doing things. 

But it's going to take more time before I'm ready, I think.

Sept 11.

We take a break, and never forget.

Sept. 10th

So... Matt went in to see the surgeon today.

What I didn't mention is that Matt was having some real interesting issues with reality. We aren't sure if it's opiate withdrawal (the colostomy rod was VERY painful, plus he was having some spasms and pain thanks to the tumor... then the pain stopped, and so Matt stopped taking pain pills rather abruptly). or sleep deprivation (being as how this big painful thing is on the side he would normally sleep on.)  Suffice to say, I didn't get much sleep those nights.

Fortunately, he snapped out of it this morning, when I pointed out the issues with his ideas. He proceeded to be lucid all day today, and made it to the surgeon's and back without incident. It wasn't easy, but it wasn't fraught, either.

 I had to buy him a cane for the trip.

 Fortunately, they make those for tall people, too.

It's cool. It even has a flashlight.

And... our nemesis the rod has been removed. We threw it away today. I'm surprised we didn't have a little ceremony. It's been a very long two weeks. Thank God it's over.

Oh, and I have sleep meds. I should not have told Matt that it can potentially cause hallucinations.  Because sleep is good. And I'm not sure I can sleep normally at this point.

Sept 5.

Today is Matt's birthday. After a rough-ish (but less rough than the past few days)
night, we are doing better.  I got good sleep. And Matt wants to go out for lunch.
This is a very awesome thing.

So after shopping we will see the Big Blue Room, at least long enough to get to our car in the parking lot.  :)

More about today later.

UPDATE:
Well, we didn't leave the house, but much snugglez were had. This is a lot less...touchy feely than one would imagine-- sort of an aggravated holding hands situation. It is precious to spend time together.

 Matt tells me it is exactly what he wanted for his birthday.

Well, that and two adorable stuffed critters.

Vide:

Gray Bear. Now taking applications for names, serious offers only.

Rwolf. Just because.

Sept 4.

Yep, colostomy sucks.  Because you literally tear you a new one.  Now it's playing more two step. We
 thought Matt had a fever. Maybe, maybe not.
We had a late night leakage. Oh joy oh bliss.

The last of the tumor is determined to bleed. And it gives him some unprecedented pain. Just when we thought things were finally going to get better... we take two steps back.

Sorry guys.

This followed by a multi-hour session with the home care nurse. Fortunately, she is not only awesome but has lots of ideas and basically taped him up to the point I doubt anything is going to leak any time soon.

Unless we happen to be unlucky.

On a personal note, I keep wondering why all these recommended ways to relax involve such strenuous activity. Like... leaving the house. and light exercise.  Personally I want to learn how to use every ounce of free time to sleep.

          But then I'd get lonely and go insane.

The Next Chapter

Okay.
I haven't updated for a while.
In part because we were in that waiting holding pattern. But we got cut short two weeks early.
Matt had some serious bowel trouble, so they installed a colostomy. That happened, about a week ago Friday. He's been in the hospital, and coming back to speed very slowly. He's in a lot of pain.

But for some reason the hospital really, really wants to get rid of him.  Matt is convinced it's all about insurance... which seems off because our other hospital was not in a hurry when we had all this bleeding and cancer stuff.  Matt is a paying customer, so... reasons?

Friends inside the biz tell me it's not so much because of insurance, but because SARS is a thing.
And hospitals are dirty. And colostomy patients have bits of their insides on the outside... more or less.
And that bag is only mils thick when you think about it.  I certainly don't want to, and I'm sorry you have to.

And because I was having... emotional difficulty, I only had one day to prepare the house to get him back.
I've been a nervous wreck merely over the idea of having strangers in my house.  Matt doesn't mind, so it shouldn't matter...

But I decided the only way to deal with it was to really clean the bedroom. I mean, really. Not merely make the rest of the house functional, but really do a job on it.  I can do the kitchen later. It's not like Matt will be spending most of his time there.

In two weeks we'll be having a Real Appointment TM with the oncologist. That's when we schedule the PET scan and find out exactly how much progress we've made.

Thanks for paying attention.  I keep saying this but I will really try to update more often.

August 16.

Waiting.
We now have two weeks until we do the big evaluation.
Matt is working again. He is also sleeping a lot, and having some incontinence issues which makes dressing changes... interesting. He is also having longer lucid periods that make it possible to work well. I'm glad the doctor let him, if a little surprised it's actually happening.

Doc says that healing is proceeding a pace. We still can't tell if the cancer is thoroughly licked yet,
but there is nothing to say yet that it won't be. We should be seeing some serious progress in the next two weeks. He said it was over 90% gone.  But the last part is the root of the thing, and that is a bit of a different animal. he didn't say it, but the implication was there.

IF there are some healing issues with various challenges at this point, we may have to do some things that
 kind of freak  me out. Ostomy.  The c word. Yeah, not happy with that idea, though as a temporary measure I could deal. Oh, who am I kidding. If he needed one for the rest of his life, I could deal with that.
It would be hard, but I would deal.  But I can't say I'd look forward to it.

Because dad had one before he died. And yes, I have dad issues. I'm sure that doesn't make me special.

Things are so nebulous and uncertain that it's hard to blog about it.

I have some very good friends who cheer me up, and talk to me when I'm crazy.  They have really helped me out. You know who you are, and I love you guys. I'm serious. After this we may as well reboot civilization together. You can handle it, I'm sure.

At some point, when I'm not super tired, I will regale you with the tale of my four hour visit to the
wound clinic.  Wonderful people, severely understaffed. I wonder if there was a game that day, and only the dedicated punched in.

This has been your update. Fare well, and good night.

Finis Radialem

The translation probably sucks, but hey.  Google translate is all I have time for.

Today is the last treatment of Radiation. In six weeks we will know if we need to do this crazy dance again.

HOWEVER.

That means today, Matt gets to go nuclear. I mean actually radioactive. To the point I cant touch him or his bodily fluids for 24 hours.  So to a hotel we go to save me some work.

This means I will probably not have the best internet connection.

We shall see.

But if you want to chat, send a message or something.  Try your usual methods, but don't be surprised if it doesn't work out.

Me? My sleep is regulating. I'm not as insane. My doctor gave me something for the intense stress and it seems to be working.  Also, I'm actually sleeping a bit. Even if I'm' not, I can relax enough that it actually does something, rather than leaving me more tired and irritable than before.

Day N+5

There was a delay even during our long day of Chemo.  We saw the PN but getting the infusion took forever. There was some confusion that I didn't think much of at the time.

Then Matt started being tired. No, not the normal level of tired I was used to. He was barely awake during the day. I couldn't fathom it. We struggled our way through, and managed to do the minimum necessary. He looked tired, smelled different and acted very wrong. I was disturbed but too tired to really peice it together. My sleep was going crazy at this point.

Tuesday I finally caught up a bit.  On Wednesday we discover why Matt has felt so weird.

They doubled up his dose of chemo.  Fortunately, they tell us, it was caught quickly. If I had written down the numbers we would have known right away. I hadn't.  So...

From Wed To Fri he was off Chemo. He could even shower!

Well... if he felt up to it. He was even worse during these days, and I was starting to seriously stress out even if I finally knew what was causing it. He was unsteady on his feet which made him singularly unwilling to risk taking a shower, since that is how he fell in the hospital.

I hit a wall Friday morning.  I realized his symptoms were reminding me of my father when his fight against cancer took it's swan dive from functional to marginal... and I just broke down and cried. 

Yes, I have daddy issues. Hello, I'm a girl and knew my father, and he was a nice guy. But they have to wait in line with cancer issues.  Matt's is the first case I've personally been involved with that didn't involve a terminal diagnosis and eventual death of a patient usually within 1-2 years. Dad, ever the lucky one, lived 3 years with stage 4, after being told he had six months to live.  My grandfather lived about a week after his stomach cancer diagnosis, and never left the hospital. I didn't even hear about it until after he died.

Sure, I had one friend who had cancer, but she pretty much pretended I didn't exist during that, and I rarely heard about progress. Then again, I was dating the guy who nuked my social life out of malevolent jealousy.

The others I know are cancer survivors, and ... I really hate to say this, but after the fact it seems unreal. Sort of like those people who I knew growing up who had polio and lived to tell about it. It's almost impossible to imagine how horrible that disease was, even with those gawdawful iron lung pictures.  With cancer survivors and cancer death, it's almost like they are two different diseases. Oh, and there are so many different types of cancer... Yeah, don't get me started.  Let's just say Dr. Google will not be returning today.

Suffice to say it's been a helluva few days, and I'm starting to decant from the past few months. Thanks to the fact that my brain is coming back on line after...a good ten years of a thing I can't call anything but depression, but it's not what most people think of as depression.

I have been a zombie. My brain only functions in tiny aspects, and I push them for all they are worth just so I can feel like maybe I accomplished a fifth of what normal people do in an average day.

I travel through a slow motion loop where an insane amount of effort goes into doing a task for hours that takes normal people 20 minutes.  Reality is flat. I literally had no sense of depth perception, as well as it seeming more like a badly produced movie with no sound track.

All of this was true long before Matt had cancer.  There were other factors, but a part of it is my limbic system has been crashed and burned multiple times... and I have some bad habits when it comes to emotional regulation.  But that's another show. Suffice to say, I'm seeing an endocrinologist who treats me out of the kindness (or boredom in his off hours, I can't tell which) of his heart, and for little more than the cost of the few things he proscribes and heartfelt gratitude. Which he can have any time he wants.

Now that I'm back, it's like I feel all the effects of my accumulated sleep loss from the last ten years.  And somehow, I still feel better than I've felt in years. Because being in misery is still living.

And it's only pain, it's only exhaustion and crankiness, and an endless frazzled anxiety that what little you have will come flying apart into space.  That's really not bad when you feel like you live your whole life encased in Ice Nine, where you will be nice and safe until men of the future dust you off and put you in a museum somewhere.  But life is out of reach and you can't even be clueless comedy relief in the future.

Here's hoping I can clean up these Augean Stables before I lose my mind...  almost before I have it. 

And the cancer thing is on a whole different level.  Until recently, it's been a problem to be solved, a battle upon which to make one's last stand.

Now it's just another part of life.  And I'm not going to be able to look heroic doing it.

Day N.

So it's been two and a half weeks of daily radiation appointments, chemo treatments, and yourn host losing her respective mind as she learns how to sleep again.  Learns how to relax.  Learns how to turn off  "emergency brain" and get back into "post shockwave, yet highly stressful normal" which emphasizes every daily grind deficit I have.

The twice daily dressing changes. The 8:00 AM appointments in a place that makes hospice burnout look good.  Okay I am not being fair, but the chemo place has it's challenges for us.  They do seem to do good work for other people, and we've finally taught them how to deal favorably with Matt's unusual problems.

Like sitting down in hard narrow chairs without arms is torture and a literal pain in the tumor, which coincidentally happens to also be in the ass.

I'm just fracking tired. And I had no desire to write about any of it. In fact, I have had no desire to write about anything at all... save for a few bright lights that clued me into the fact I can't just turn my back on writing forever.  I still have the bug.

Those little moments I use to update blogs and write stuff... has been used for things like... tuning out the world, staring at walls, walking in parks, and in general, cautiously  preserving what little sanity I have left.

Yeah, I was great fighting fires and running to the ER every day. This, "Cancer as an every day reality thing?" Not so much.  Then again, it pretty much ate up my reserves and now I have time to deal with the fact that they are gone and need recharging.

But what prompted me to post is that there is only one and a half weeks left to go in this ongoing struggle to kill the mango of death. It's now about the size of a dried up mission fig that got run over by a waffle truck.

They say that the tumor *should* be dead about six weeks after that.

I promise to update more often than I have before, but might not be every day.

Love you all. Stay frosty, my friends.

Day 20

Wednesday

Note to self: Early morning chemo appointments are problematic at best.  In short, there is no good time to do chemo. It just always sucks.  Though pain management (or lack thereof) had something to do with it.

Today was special in that we were shunted off to see a doctor on a day when the doctors were not seeing patients.  We waited over half an hour before people noticed that maybe Matt seated in a horrible waiting area where he has no accommodation to his pain is a bad idea.
Then we got the needle replaced and the new drug packet installed for the pump. Fortunately, that waiting area is actually designed help hurting folks be more comfortable, so it was much better. He even felt cooler in there than in the cramped office room, but I thought the cosy waiting  area was actually a little warmer.

Not sure who was right, there.

After I got Matt home, I zoned out for a while, made lunch, and got Matt something too. He actually wanted some coleslaw that I made.  Knowing how I feel when all I want to eat is yogurt and ensure, I was stunned to hear it.  He even liked a recipe I'd made for myself.  That was kind of cool, actually.

Then I got our supplies ordered. Apparently, these types of wound dressings are not much in demand. I have been to a grand total of six places that don't carry them.  I finally got them from the first place I went to, that kind of creeped me out at first. Then I discovered that they are affiliated with a home care store.  I went there and ordered extra thick "Chucks" otherwise known as "under pads". They have nothing to do with underwear except you lay on top of them.

We had a nice talk and got all the stuff we need for a dressing change for the next month.  Also got enough chucks to last a month, too.  So it was a long term win. All my stuff is set to arrive on Monday.  Though the chucks I have to pick up from the store.

Then we did radiation. Again.  Well, at least I got to read for half an hour in a pleasant waiting area inside the hospital.   I sat down and found a cosy looking hideaway and was startled when Matt found me.
But I wanted to look at trees, not people. So... yeah, one of those days.

My days revolve around tiny details these days. But I have to keep them all in the air at once.

Day 18. II & Day 19.

Radiation happened, and other stuff. I bought a new purse at the gift shop, because the sketchy zipper on my old one finally gave out in the middle of doing things this morning.

Then  I had to go back for my rain jacket that I left in the waiting area.  But I had to take Matt home first, because sitting around to wait is literally a pain in the ass.

 Then I bought new charge cables and a new camera bag.

This bag is awesome.  Unlike the old one, it slings comfortably over my shoulder and balances the weight well against my back. it has room for a water bottle, my tablet or a kindle, plus my camera stuff. I think I could even put my big telephoto in here, yet claim to be traveling light.  :)

Did my best to get to bed early, and my anxiety meds are still in effect. Was a half hour late taking them, but it doesn't seem to have affected much.

Day 19 is the day of Thrush.  It was bad enough neither of us slept.  But we can't call a moratorium on yeast.
I solved the problem-- at least temporarily --by eating a full 16 oz container of plain yogurt in one sitting.  Here's hoping I can get Matt to eat his yogurt.

But I can still want mosquitoes to all die.  This is also relevant to my post about the camera bag, because the park I want to take photos at is infested with them.  This park has been submerged and washed out by the recent storms-- and therefore is a breeding ground for the pint sized vampires. They won't let the DNR spray for them anymore, so if malaria and West Nile comes back STFU.

 There's a reason why my other purchase was industrial strength, deep woods OFF. I just wish it still had DEET in it. Stupid alarmists.   If the Enviros want to get after me for wanting to call genocide on those vicious little creatures, Why yes, they can.  No, don't bite me, the mosquitoes already do.

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.