Doctor's orders: no spears for the kids

Had lots of follow-ups this week.

Monday: MRI

It's official:

MRIs are boring. 

Tuesday: Urologist.  Said everything is going reasonably, and I no longer have to manually empty unless I need to (which happens about once in 3 days these days).

Today: Neurosurgeon.  Said MRI looks clean, and everything is okay, and he's happy.

I mentioned that it hurts when kids sit on my back.  Response: "As it should".  I'm concerned about injury to the spinal area with force to the area where I'm missing bones, and he said that there's still enough bone to protect the area against most incoming objects.  "Unless you get speared in the back, it's probably fine". 

Gotta send back the spears we bought for Christmas.




(Not serious about that last sentence, in case you think I'm demented.)

Voiding status

So I posted earlier that my graph is like this:

Except that the period of the wave seems to get larger over time.  Right now, I'm on the upswing where last week was down.  I accidentally went of the drugs (Can't remember if I said that), and it seems to be okay.  I manually empty about once a day when I'm at the peak, or twice in a valley, and in those cases it's about half a cup.

Guilt

Okay, so this is going to be weird:

So, the last few months have been a little traumatic, but it's basically over -- except for the GI issue, whereby I left a lab work culture at the lab yesterday, with TBD results, and the urinary issue, which, seems to be good 2 days in a row and less good 2 days in a row, and the good days are about as good before all of this started -- and sometimes feels like a distant memory.

Today is the 2-month anniversary of the middle surgery.  About a week after coming home, and I got on antibiotics, and they were worried about things like meningitis (where, it seems, a for this is if you can't touch your chin to your chest), I find out that a neighbor of somebody I know dies of meningitis.  He was in his 30s, has small children, and it came on suddenly.  Various friends and family members are acquiring their share of chronic ailments.  Then there's me, almost sort of virtually back to normal.  How am I supposed to feel about that?  Lucky?  Guilty?  Weird?  I guess I'm a little of all of that................................

Brief update

Okay, so I lied.

Yesterday, I went to work full-ish time.  But I got exhausted come around 1pm, so I took a 2-hour nap on a nice thick mattress left by a coworker from when he was recovering from his cancer treatment (that other coworkers have used when they stayed too late or didn't go home).  Finished the rest of the day, and was exhausted when I got home, but I managed to get another hour a few hours later.

New personal record: yesterday I did 1/4 mile in 8:45.  Woohoo!

Today I did a full day of work without needing a nap.  Thank heaven my flu is wearing down.  I didn't do any exercise today, because I figured I'd be back and forth across the office all day, and I was right.

Last post on recovery

This will probably be my last post on the actual recovery of the surgery and stuff.  So if you happen to be following this blog, don't be surprised if there aren't any useful posts here on out.

My back feels very good.  I can do most anything.  I can roll into bed rotating around weird axes, I can squat and pick things up from the floor (I haven't dared to try straight-knee touching the floor yet), I danced with my wife, went to the store by myself to buy an accurate thermometer, I sat on the floor just to see if I could, and yesterday I worked a full 8 hour day.  Yes, it took until 11:45pm (I needed a two-hour nap to help settle my fever, and needed to spend a bit of time helping everybody else with theirs, and to beat a few levels on "Super Mario Galaxy"), but I did it.

So to be honest, for the recovery to be complete, there are only a few things left:

1. for my quads to quit feeling like they're solid stone (which is as a result of laying in surgery).
2. to heal enough to lift and do actual exercise.  I'm on a 1 month "don't lift or exercise no matter what" thing.
3. to pee on my own.  I'm certainly not going to give you a day by day on this, but I will mention it once I can do it.

And maybe to finish recovering the flu, which is mostly managed.  So there's not much else to say for recovery. 

I do need to say though that I feel strongly that the Lord has helped us get through all of this.  There were moments that were close to being really bad, but we made it through, and it looks like everything's going to be just fine.

I should also take a moment to thank my doctor, too.  My urologist said the other day, "You know, lesser surgeons wouldn't have bothered to spend 9 hours in surgery trying to save all those nerve roots; they would have just chopped them off", which made me happy to have the doctor we have, and made me a little sad for the other ones.

Travels

Today has taken me everywhere.  We went to a followup with the neurosurgeon and got the stitches removed.

Then, we made a cameo appearance at work and said hello to a few people.

Later, we had an appointment with the urologist (the circle is complete Ba da da).  For some reason he was concerned with me having a 102 fever, and gave me some pretty psychadelic antibiotics.  Fever seems to be reduced a little now.  At this precise moment, I actually feel better than I have in the last few days, and what I said was overdoing it might have simply been me being sick.

Also, at the urologist, with the catheter removed, I haven't been able to pee yet.  He said that with the original problem being with the nerves being aggravated by the tumor, and them being aggravated with the surgery, it can take time, even months, if at all, for full bladder functionality to be restored.

10 hours and counting

And then I get to take off the bag.  You know which bag.

Brief update

So, somewhere over the weekend or Monday I completely overdid it and spent yesterday completely flattened, and went to bed before 9.  Which is doubly compounded by my wife somewhere catching a big nasty cold and her also being completely flattened.  Which means lots of television for the kids.  Oh well.

Last night, I exhibited brief signs of also catching the cold, but so far I haven't finished catching it, at least not to her extent.

So yesterday, I did a few hours of work and a few hours of SWTOR laying down.  I did a little more work on Monday.  I'm trying to build up to go back to work on Monday.

In general, things are a little more flexible.  Yesterday, I was able to lean over on something and grab something from the floor.  I think that my quads are also loosening up to actually be flexible.

Summary of overdoing it:
In addition to normal "ambulations",
I did a half mile at 1.2 mph on Sunday (or Saturday - don't remember)
I did 1 minute scale-backs from 2.0 to 1.0 on Monday

Incision and mobility

So I saw my stitches the other day for the first time.  Freaked me out.

A quick note about mobility.  Today I managed the following stuff without too much hassle:
* plugging something in - took a step and a half leg-sqat
* putting on socks - brought my legs up and had the sock wrapped around my non-thumb fingers
* putting down the toilet seat.  Sorry Dear it took so long.

In the hospital they said "No BLT - no bending, lifting, or twisting".  And I could bend/twist absolutely nothing on day 1 without miserable pain.  However, each day brings about 1 degree of mobility (maybe).  So right now I can do stuff like reaching over my shoulder without throwing out my back.

Wolves

So yesterday I spent the entire day worrying about throwing up, today I spent all day EATING!!!!  The ravenous wolves!  I actually ate dinner as it was served.

But now I worry I ate too much; I think it will be fine though.

However, I still have that "while I'm standing, I feel faint" issue, which I've had since surgery.  I called that nausea a few days ago, assuming that I'd been nauseated since surgery.  However, today, there were definite signs of non-nausea.

On the other hand, we did have diarrhea (since we spent 2 hours on the toilet yesterday to get all the hard stuff out, we had a soft one to show the softeners were actually doing good, and then a runny one).

Today was a trial work day, with a goal to get a few hours in, and we did.  However, it took all day, and I changed positions a bazillion times to get there.

Remember those french fries?

Yesterday status:

Poop achieved.  Awesomeness.

French fries and gyro - returned.  I didn't even try to make it back to the bathroom and let them come right on the carpet.

Called the doctor again.  Doctor stressed that the the number one important things were to not throw up and to not strain while pooping.  These could cause the suture on the spinal canal to pop and that wouldn't be good.

We started treadmill walking.  Sorry - there just isn't enough room in this house to ambulate enough to get anywhere.  Started at .5mph, but that was like "baby step - wait 3s, baby step, wait 3s", but then we found that 1.2 was a nice speed.  I did 1/6 mile 3 times yesterday.

Jacob Marley

I had to get up again around 4 to walk around.  Laying down around 8, and only getting up to go to bed, leaves one stiff.  This was the first time I got up with no backup (half of Saturday, I had either wife or her mom there to catch me if I fell), and I had to take a few dozen laps around the house.  My wife woke up and I told her I had to pull a Jacob Marley.

'Nauseated'

So I learned on 'Big Bang Theory' that you say 'nauseated' instead of 'nauseous'.   I was looking a video that explained why instead of simply that you do, but couldn't.

Anyway, I noticed that whenever we talked about nausea or being nauseous, our doctor would respond by talking about being nauseated.

Anyway, yesterday, we made it to cane status, went up and down the stairs twice, but I ate a greasy gyro and lots of fries, partially by which (and partially by spending most of the day in a seated position instead of a laying position) I ended up a little nauseated.  We noticed that the discharge instructions said that if you feel nauseated, you should call the doctor or return to the ER.  The doctor thought that was a little ridiculous, as the pain meds themselves can cause nausea.

So last night we went to fall asleep while my wife and her mom watched "Breaking Dawn" around 8.  The kids came out of their movie night after we were asleep already.

End freakout day

<End retrospective>

Today has been the day of "What did we do last time we were here that got us into emergency surgery?" and freaking out about everything from "I ate some Nutty Bars" to "We took a careful shower".

Anyway, no pressing need to go back to the doctor.  Main difference being though that it's hard to be up so much - I'm sitting in a supported position much more than I was in the hospital.  I spent most of the time laying there.

Today I haven't cheated yet - meaning, when you get up, you're supposed to push off what you're sitting on and not what you're getting onto.  Yesterday I just wouldn't do that cuz it hurt so bad except that first time, but today it good.  I might even venture downstairs or trade up the walker for the cane a little later.

Discharge for real!

Get back to the same room, and another normal evening.  This time, recovery hurts more, as I expected it to, but:

THE ROOM ISN'T SPINNING ANYMORE

So we spend the evening watching the 1st disc of Castle Season 4.  I swear it looped 5 times before I made my wife shut it off.

Morning comes, we start inclining the bed (coming off of flat rest, prepping to walk).  We go walking, and this time it hurts really bad.  In fact this is the first time I haven't made it up yet.  I kind of got stuck at the extend-your-legs point.  But I pushed through it, and made it to a perceived 7 on the pain scale.  But the rest of it is okay, except maybe the sitting part.  The bed just seems so much further away this time than before.

The doctor comes and says he would like to discharge us today.  As long as PT says we're ready, he didn't see much point in us staying there much longer.  He draws up the papers and leaves it in our hands.

My wife and I talk about that and she gets her hopes up.  I feel the need to put my foot down and make it clear that it I'm not okay with it it's not going to happen.

So we wash, and the sink is too far away, and we walk a few more times.  Then I decide it's time to go, even though I only actually pushed up from the bed once.

Then we had to call in a guy to charge up the car, and call a repairman to get the key out of the ignition, get my mother-in-law and brother-in-law to come get us (he just happened to be in town on the way to ND).  Took about 10 minutes to get out of the car, because you know, they're not flat, and then get in the house.

Lots of family to celebrate finally getting home, and then went to bed early.

Back to the drawing board, part 2

The next day, we arise in good spirits - starting to get hungry, no pain, with the room still spinning.  However, with everything, nobody will give us food until the doc says so.  Problem is - he's in surgery.  (What? He has other patients??!!1)  But his PA comes in and examines my dressing, and was very clearly "That's CSF") - coming through the skin.

He does let me eat though - so I have 2-3 saltines and half a spoon of jello.   Bout an hour later we were talking about food with some staff, and then the dr walks in and says ""no food - we need to get back into surgery" to fix the leak.  He had spent the last few days hoping the exhibited leak would finish healing.

We spent the next few hours waiting with a very "we're ready" attitude.  Some visitors at work and family - it was very nice again.  We watched the next Castle (we had fortunately the previous season, and caught up on Psych).

This time the whole admission was more normal, and they covered things I had missed on the second one (since that one was more emergency).

The radio played "Already gone" as we were wheeling into the pre-op.  Jerks.

As I was coming out of surgery, it was very surreal.  It was like I was a part of a big puzzle waiting to be claimed.  I'm sure as I trying to explain this to my wife she thought I was a little nuts.

Back to the drawing board

So,

[Retrospective]
After we threw up the other night, we were grounded from eating and drinking anything until my body starts reestablishing its own natural order of things, meaning no more vomit and producing its own BMs, and then a natural appetite.  So, yesterday we enema'ed, and not much later released stuff, and led to 3 diarrheas later.

And then we waited.  More therapy, we're wandering around lazily with a cane now, and I am now completely off the pain meds.  So, as my wife said, "Did you rejoice in the small victories?"

However, we still had no natural desire to eat, and the room still spins really fast.  Various people have made fun of me because I have tried to non-loserishly describe the direction and speed the room spins.  And there were moments,where the room would spin at multiple revolutions per second.

Close to bedtime on the 21st, I was starting to scrape at the bottom of the barrel.  I'd been pretty positive most of the time, but this evening I was really starting to lose it.  You should know that I'm a religious person, a member of the Church of Jesus Christ of Latter-Day Saints (Mormon).  I actually wasn't going to talk about religion on this blog, but oh well - I guess it's part of who I am.  It's hard to talk about religion without talking about faith, which is kind of where I wanted to go here.

I know the word 'faith' has its own set of definitions, but the way faith works for me is as follows:  Stuff happens, and it's okay.  That's really a short definition and all.  More specifically, I believe that the reason we are sitting here on earth living, having families, working, etc. is not the end of our existence.  Particularly, after death, at some point our bodies will be restored and our families can be brought together again.

I really do believe that.  Therefore, most of the time, I see death not as the end of the line, but as a change -  a retirement or a graduation.

However, as many people who believe in God, I also believe in prayer.  Here's a sentence that sums up the purpose of prayer for me: The object of prayer is not to change the will of God, but to secure for ourselves and for others blessings that God is already willing to grant, but that are made conditional on our asking for them.   For me personally, I find it difficult to reconcile these statements, or when to invest more in one side than another.  However, they are enough to swell the "God doesn't care about me" or similar attitudes.

So what I do typically is pray for assurance, guidance, and peace.  As we've been going through all this I've felt strongly that it isn't time to go yet, and that He will yet bring us through it.  At this point it's just been so hard to see.

My wife and I then had a nice cry-fest (where I think I elicited almost a tear), and I spent the next while praying, and I found it hard to hang onto any hope of pulling out of it, but I found the strength to keep trying, and after a minute I found one small, faint symbol of hope (think Star Trek - one life sign, very faint): the teeniest desire for food.

And then the vomit comes

Ate dinner, waiting for our last walk of the evening, and then right as the evening nurse comes in to check vitals, we vomit all over the place.  Well, by 'we', I mean 'I', and by 'all over the place' means 'in a manner where we had a few seconds to get a bucket, not get it all over everybody, and yet still fill a rather sizeable bucket'.

So we have to decide if it's the vomit that will cause more vomit later, or if it's the kind that "ah, that feels much better", so I make everybody bail the plans for the walk and let me rest for a minute.  Then, about an hour later, I'll all in freak-out mode, which is probably doing bad stuff for my body, and my wife and my nurse "convince" me to go for a walk anyway.  That turned out to be a good thing, and we returned to bed not in not-awful spirits.

We also have to decide if it did something insane like blew open incisions of the spinal cavity or anything last night, but we will don't have any signs of anything bad so far.

Today, so far, nurse comes in, we make a drug plan (to start letting the body take over again), a walking plan, (to let the body take over again) and bowel plan (which really involves doing nothing except eating softer stuff and to let the body take over again).

Was going to try to check work email, but we took work stuff home on Friday and didn't bring it back, so that can wait till later.  Since I was up to date on Friday, and yesterday being a holiday, I was hoping to not get really behind.

Down and back up

This morning we get up and I was pleased with everything.

Then we went for therapy, we walked two laps, and I wanted to push it a little it so I stayed sitting on the edge of my bed for about 5 minutes, but I get really really dizzy and lay back down again.  Then the doctor comes and in and is like "Okay, let's watch you today, but you should be good to go tomorrow", and he congratulated us on not having any emergencies in the middle of the night, no leakages, no anything, gave us a goal to get up walking 5 times today and leaves.

However, I was floored for the longest time after that walk this morning.  BTW - the walks are so much harder now than they were last week, with the extra time out.  My legs are really stiff and I am only doing about 0.3 mph (guessing).  So, I lay down for a nap for a bit with the intent of getting up in about two hours, but I was just so tired.

So, after about 4-5 hours, my nurse and I talk about it, and she convinces me that get out and go again, even though I don't feel entirely ready.  I think the problem was that I was experiencing a huuuuuge amount of vertigo, which is somewhat normal for people with spinal fluid problems, AND it's my body slowly waking up the anesthesia.

So we go for a walk again, and it's great.  And we've been on two more since then, and they've been great.

And I killed a horsefly with my fingers and it was great.

However, I will propose a definition for you:
Exercise is effort spent your energy pool trying to gain/maintain a skill.
Therapy or Rehab is spending effort that you don't have trying to gain/maintain a skill you used to have.

And the world is good for this moment, and for that I will say simply for this moment, "I thank God for the peaceful moments".

A step up

It's really hard to blog with the finger covered by an O2 sensor.

Saturday we spent catching up on rest.  There was some hope of trying to get up and walking around on Saturday, but we were just too tired.

The doctor said on Sunday Morning that we had been really leaking spinal fluid, so that was why nothing good was going on Saturday evening.  However, there was not much actual blood, which is good in case the hemotomas keep coming back, but bad in that blood is the best thing to seal up the spinal cavity.  So he right there sutured up the drain site, and we were instructed to try to get walking today.

We spent a while increasing gradually up the incline in the chair, about 10 degrees an hour, (20 was last week). I was perhaps freaking out about this a little too much because the doctor said that headaches were indicative of spinal fluid loss, but he said to not be hindered by dizziness or lightheadedness, so we push through it.  We do a walk in the evening and all was happy.

There was a nice visit in the evening with my parents, two of my sisters, and some long-time neighbors (thanks guys!) spend a while visiting, and then we walk again and all ways happy.