The morning started with a phone call from the surgeon.  We reviewed the drain output log that I had faxed him last night, and he was still reluctant to pull the drains given the output levels.  He’d like to see the output in the 30-50 ml per day range, and right now, I’m running in the 60 ml per day range.  Of course, that’s much better than the 135 ml per day on my first day home from the hospital (Round 2).

He was encouraged that the trend continues downward and wanted me to call him tomorrow with today’s numbers.  Of course, with the weather situation as it is, there’s probably no way that I would be able to run to Cincinnati tomorrow if he gave the green light to pull them out.

He’s in surgery all day Wednesday, but thought it might be possible for me to meet him at the hospital to remove the drains if the numbers looked good.  Realistically, I’m thinking the earliest these may come out now is Thursday.

I understand why he’s being so cautious–and I support that–but, still, it’s a disappointment to know that I have to run around with this extra plumbing for several more days.

After talking with the surgeon, I decided to take inventory of all that I have here in anticipation of the storm.  I decided to make a Kroger run for two reasons.  First, to stock up for the storm and, second, to see if I’d be okay driving with the drains in place.  (I was wanting to see if I’ll need someone to drive me to the appointment to have them removed, or if I could do it myself.  I’d feel comfortable driving myself.)

It was only the second time that I’ve been out of the house on my own since 3 January.  Talk about cabin fever!

I stocked up on the essentials–bread, juice, batteries and my latest “essential,” Depends guards. 

This storm could be a real doozy.  The Weather Channel is showing that Indianapolis can get up to an inch of ice starting tonight and into tomorrow, and that will wreak havoc on the city and power system.  Cincinnati, on the other hand, is expecting more rain and some freezing rain, with perhaps a 1/4 inch of ice accumulation in the morning.  I’m hoping that we get more of what Cincinnati will get instead of what Indy will get.

Still, I have filled a 3-gallon camping jug with water; brought my sleeping bag in and set it beside the gas log set in my fireplace; charged a battery operated camping latern; and have positioned plenty of candles and flashlights around the house.  If we do have a power outtage, I should be okay as long as it’s rather short-lived.

The last few days have been pretty good in terms of my incontinence.  I did notice, however, that as I walked through the parking lot and grocery store that there were a few more minor squirts than I expected. 

I guess walking 60 or so feet around the house doesn’t tax my bladder enough when compared to several hundred feet in the grocery store.  It’s time to walk several times a day in the house for half an hour or so to build up that muscle control.

The other thing I need to work on are stairs because the drains are a little tender when I go up or down them.  I really haven’t done that since coming home.

This morning the sun was out for the first time in a while, and I sat in the living room, basking in the warmth of the sun’s rays like a lazy old cat.  I stayed there until the sun moved to the point where its rays could no longer reach me.

That was the highlight of my day.

The drains continue to annoy me.  I’m so hoping that they’ll be able to come out tomorrow.  The right one got blocked again this afternoon, so I had to clear it to get the flow moving again.  I’ll be sure to mention that to the surgeon when I talk to him in the morning.

The forecast calls for snow/sleet Monday night, turning to freezing rain late Monday/Tuesday morning (with a 1/4″ of ice possible), rain Tuesday afternoon, followed by snow on Wednesday.  I really hope these things come out tomorrow!

So that’s it.  I imitated a cat today.  Woo-hoo.

For a while today, I thought I was back in the hospital with the number of incontinence mishaps that I’ve had between last night and today.

Shortly after midnight, I made a run for the bathroom and didn’t quite make it.  I’m not sure what happened to my guard, either.  It must have shifted because it didn’t catch much of the urine that escaped.  Another mess to clean up.

During the day today, I’ve had two other minor mishaps, but significant enough to warrant a new pair of underwear in each case.  Must be a full moon or something.  I thought about returning to the full-blown Depends diapers, but put that idea on hold for now.  Maybe tonight when I go to bed.

The exit points for the drains are becoming increasingly sensitive.  There just is no good way to route the hoses, so I have to bring them up out the waistband of my underwear, and each time I have to pee, I have to very carefully and gently rearrange things while making sure that I’m not tugging on the drain excessively.  I really hope that they can come out on Monday or Tuesday at the latest.

Speaking of drains, I noticed that the tube feeding the right bag was filled with fluid, but there was virtually nothing in the bag.  I did a quick little troubleshooting and repair (using tools drown in alcohol), and now the flow has been reestablished.

With all the runs to the bathroom last night, I’ll have to admit that I didn’t sleep all that well and took a little nap this afternoon.  After that, I began working on my taxes.  Fun.

So that’s it for this Saturday.

Another quiet day around the house, which is a good thing.

The drains continue to do their jobs, and the flow from each is steadily decreasing (just look at the trendlines on my charts to be sure).  Hopefully, when I fax the charts to the surgeon on Sunday night, he’ll see them first thing Monday morning and call me to bring me in to have them removed on Monday or Tuesday at the latest.  (It took me about an hour to configure my computer to fax documents yesterday.)

While I was in updating my drainage flow chart, I thought I’d create another one to see how long I can go between voiding my bladder.  I’d like to see that number go up over the next week so that I can be more effective when I return to work.  That means I’m trying to hold things a little longer without jeopardizing a major accident.

One other silly exercise that I’m doing is that when I do get the urge to run to the bathroom, I’m making several laps around the house to simulate the distance between my office and the men’s room at work.  I want to make sure that I can make the distance without having an accident if I get a sudden urge.  So far, only a couple of minor leaks as I walked.

I’m remaining religious about taking my antibiotics and they, along with the drains, are doing the trick.  My temperature has remained normal since gettng out of the hospital.

Now that I’ve worked my way through a lot of the food that was brought over, I’m beginning to get back into a more regular and new pattern of eating.  One that includes much more fresh fruits and vegetables, more whole grains, less red meat, and less animal fat. 

I only want to go through this cancer crap once, and if improving my diet helps prevent something like colon cancer (closely related to prostate cancer), then I’m going to make the change.

Does that mean that I’m forgoing the Pollo Loco at Acapulco’s for ever and ever?  No.  I just want to be more sensible as I go forward.

So that’s it for this cold, overcast Friday.

There really isn’t much to report today.  I spent a good portion of the day just organizing things around the house–clearing all the post-surgery stuff from the bathroom; filing medical bills and statements; taking the trash out (for the first time in three weeks!); running a load of laundry.

After having a good incontinence day yesterday, I shed the full-blown Depends and opted for the guards in the underwear today.  No problems so far; just the occasional stress incontinence.

I shared (in spreadsheet chart format, of course) my drainage numbers with the surgeon today.  He was pleased that they’re moving in the right direction, but wants to keep the drains in through the weekend and to call him Monday morning. 

That’s okay, I guess. They’re more a nuisance than anything else, but if they help get all that bad “juice” out of me–along with the antibiotics–I can tolerate them for three or four more days.

He asked how the incontinence was going and when I told him that I was in underwear with guards, he was pretty amazed given that the catheter came out two weeks ago tomorrow.  He was very pleased with that, so that’s a reassuring sign.

So that’s about it.  The last of my W-2’s arrived in the mail today, so maybe I’ll begin working on my taxes while I’m still sporting the drains this weekend.

Simple Gift #1:

OMG.  What a difference a real shower makes!!

The nurses wouldn’t let me take a shower with the dressing over my drain outlets (even though it’s covered in plastic), so I asked the surgeon as he discharged me and he said it wouldn’t be a problem.  So this morning, just to be extra protective, I grabbed a gallon Ziploc bag, taped it over my abdomen where the dressing was, and stood under hot, streaming water for about 15 minutes.  Heaven.

Simple Gift #3:

Sleep in my own bed.

My first night home was a good one.  It was a lot easier to figure out what to do with my drainage bags that I thought it would be.  I just created a little nest with an old towel on the mattress beside me, and the tubes leading to the bags are long enough where it worked out just fine.  (These bags operate on a vacuum system and don’t rely on gravity to drain, so they bags can be at the same level as my pelvis.)

I was able to sleep quite soundly and only ran to the bathroom twice in the middle of the night compared to about once every 60-90 minutes in the hospital (I guess without the IV fluids, there was less to void.) 

A great rendition of the old Shaker song:

Finally, I think I hit one of my lowest moments in this whole experience a couple of nights ago in the hospital.

I had turned out the lights at 10 PM and managed to fall into a deep sleep very quickly.  The urge to pee hit me, so I started my 10-step process to get to the commode.  When I got to step six, stand up, I instantly started filling my diaper with one of the hardest and strongest streams that I had felt since being admitted.  And it kept on to the point where the diaper overflowed and pee was running down my leg onto the tile floor and my little hospital booties.  And there wasn’t a damn thing I could do about it.  Nothing.

I called the nurse and she got me and the room cleaned up.  When I looked at the clock, I was astonished to see that it was 10:50 PM.  I had only slept 50 minutes when this happened.

About two hours later, the urge hit again.  I vowed not to have a repeat experience and made it to the bathroom.

Just as I sat on the commode–and before I could get “things” aimed in the right direction, the damn burst again and I’m peeing on my hand, the toilet seat, in the bowl, on the floor. 

That was it.  That was the low point of this whole experience.

The nurse was extremely compassionate and listened attentively as I vented my anger and frustration. She reminded me that the pockets of infected fluid were putting so much pressure on my bladder that it’s no wonder that I couldn’t control it.  

At one point during one of the episodes, I barked out, “Where the hell is all this coming from??”  She reminded me about the IV fluids being introduced into my body as one source.  The next morning, she talked to the doctor and, because the fever had broken, he agreed to take me off the IV fluids altogether.  That helped considerably.

In the day that I’ve been out of the hospital, the incontinence issues have been only minor–occasional stress squirts–so I hope the days of peeing down my leg are well behind me.  I think they are.

When telling the surgeon about this, he said that guys don’t realize that the weeks after the catheter being removed is the worst part of the whole experience.  He described what most go through, and based on his description of where most guys are at at this point, I really do feel as though I’m ahead of the curve.

Still, he said that regaining continence is like riding a sine curve–there will be ups and downs. 

I just want to be confident that I’m not going to stand up in a staff meeting and have a major incident, or that I’ll have enough time to walk between my office and the nearest men’s room.  I’m not sure when that will be.  Soon, I hope.

Yes, I’m home.

I was discharged late this afternoon and arrived home about an hour ago, thanks to the chauffeur services of a friend.

I spent a little bit of time getting the stinking black bananas out of the kitchen and organizing after my five day absence. 

The drainage bags that I was given are the same kind that I had for the surgery itself–a small, football-shaped plastic container that’s slightly larger in size that a large lemon.  They fit nicely into the pockets of my sweat pants, so getting around the house will be much easier than I expected.  Sleeping, however, might be another story.

The large bags clipped to the bed linen away from my body.  I’ll have to figure out a way to keep these smaller contained away from me so I don’t roll onto them during my sleep.

One thing that I need to do before going to bed is create my fluid output rate spreadsheet.  Those numbers will determine when the drainage bags come out.

Hopefully I’ll be up for a more detailed update tomorrow.  G’night! 🙂

today was a really good day.  my temperature was near normal the whole day.

the surgeon stopped by early this morning to check on me.  we reconfirmed that we wait on the culture results and how the fluid is draining before we make a decision on the next step.

i was able to spend a good part of the day walking the halls, entertaining the staff.  in the afternoon, i was liberated from my iv for four hours until the next antibiotic treatment.  no more iv fluids to overtax my beat up bladder.

i should know more about what is next when i see the surgeon tomorrow.  he  was here at seven today and around eleven a couple of days ago.  it appears his schedule is anything but routine.

more when i know it.

today was a much better day.

it started with not having a fever and got better when i got out of bed.  up until today, every time i stood up, i would instantly void my bladder into my diaper.  today, that did not happen.

the fluid that was drained was putting so much pressure on my bladder that there was no way i could control it.  now with the fluid gone, i can.  and that made my day.

i still have the occasional stress squirt, and that is okay for now.

my temperature has been at or below normal all day long.

my surgeon wants to wait for the culture results before making any decision about discharging me.  i may have to have another ct scan to confirm that the fluid is gone.

mybest guess is that i will spend monday night here.  things are looking up.

The day started with a bit of confusion.  My nurse said that the team that normally performs the procedure to drain the fluid does not work on the weekends and that I would have to wait until Monday.  She did not realize that my surgeon had made a special request to have them here today.

The procedure was quick and easy.  I was awake throughout, interacting with the team.  They installed two drainage tubes with separate drainage bags.  More hardware to lug around.

This evening, three visitors popped in for an hour and a half or so.

We will learn more of what the next steps are tomorrow.  if i were to guess, i would say that they chances of me still being here on Monday are good.