Day 82 - Disappointment

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.

Day 81 - Cat-like

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.

Day 80 - Mishaps

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.

Day 79 - Analysis

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.

Day 78 - Organizing

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.

Day 77 - Simple Gifts

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 #2:

Peeing standing up.

Yep.  When I was in the hospital the easiest way for me relieve myself was to sit on the commode.  Trying to manage the long hospital gown, two drainage bags, IV stand, and diaper tabs was just too much to do standing up.  The current bag arrangement allows my to stand as normal.

*    *     *

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:

Alison Krauss & Yo Yo Ma, "Simple Gifts"

*     *     *

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.

Day 76 - Home Sweet Home

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! :-)

Day 75 - Mobile

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.

Day 74 - Better

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.

Day 73 - Drained

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 untilmonday.  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 visutors 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.

Day 72 - Still Here

so i had my ct scan this  evening and it showed a build up of lymph fluid from where the lymph nodes were removed.  they will do a pro@edure tomorrow to drain the fluid and install a drain.  they will use a ct scan to guide the needle to drain the fluid.  i should expect to be here at least one more day, maybe longer.

not what i was hoping to hear, but they are pretty confident this will take care of the problem.

Day 71 - Admitted

i am back in good sam and will be admitted while they try to figure out the cause of my fever.  they will keep me until i am fever free for twenty four hours.  fun.

Day 71 - Setback

This morning I woke up with chills and a fever that hovered between 100.4 and 101.6.  The surgeon has ordered me to return to the hospital so we can figure out why.  He even thought that there would be good chance that I'd be readmitted for observation.

I'll try to let you know what's going on as the day progresses.

Day 70 - Itchy

So I've been itching for the last 24 hours.

First, there's all the incision points.  They're healing nicely but a couple of them have a nice scab over them that I just want to scratch right off.  They're driving me nuts.  Of course, I won't.  I'll just leave them heal on their own.  It will be faster that way.

Second, there's the body hair that's regrowing where they shaved me prior to the surgery.  That stubble--in places where stubble should never be--also itches like crazy.  (By the way...  Just how do you get that job of body hair shaver?  Are you the lowest resident or nurse on the totem pole?  Did you draw a short straw or lose a bet? I don't know.)

Finally, I've been itching to get out of the house, so I did.  I busted loose.  Escaped.

After paying a couple of bills yesterday, I realized that I was down to a couple of postage stamps left, so I hopped (well, not so much hopped--gently eased myself) into my truck and drove the 8 blocks or so to the post office.

With the forecast of snow, I also headed to Kroger to pick up a few things--loaf of bread, fresh fruit, freezer containers, juice.  Nothing much.

The trip lasted about 45 minutes, and that was just about the most I could handle.  I wasn't my usual speed demon through the aisles of the store; I took it at a much slower pace.  I was very careful getting in and out of the truck and carrying the bags into the house.  All in all, it was a successful trip.  Except for one thing.

When I returned home and put the groceries on the kitchen counter, I noticed that I forgot to bring my Cialis prescription to the pharmancy.  I've got enough pills to get me to Friday night (take one per day).  Because of the snow, I went back to the pharmacy this afternoon to refill it. 

The surgeon's office forewarned me that it's not likely that my insurance would pay for it, and they were mostly right.  Interestingly, my insurance will pay for 6 of the 30 pills.  Odd.  I'll have to do a cost-benefit analysis to see if having the ability to "sport wood" is worth $140 a month.  I know it's important to take it regularly to reestablish that functionality, and once it's reestablished, I may be able to cut back on the chemical assist.

There were a few snowflakes landing on my windshield as I left the pharmacy.

*     *     *

GRAPHIC BIOLOGY AHEAD:

As far as the incontinence goes, it's about the same.  It really only seems to happen when I stand (although when I took a couple of steps in a parking lot, I felt a tiny squirt), but not every time that I stand.

One thing that concerns me a little.  Early on, when I would stand, I would contract my floor muscles and that seemed to be doing the trick.  Now, that seems to be less effective.

I only got up twice last night to use the bathroom (I'm cutting back my fluid intake shortly after dinner).  The second time was a close call.  I hung on almost too long.  Interestingly, as one of my fellow prostate cancer survivors told me, I was astonished at how quickly I can drain a full bladder now.  It took somewhere between 5 and 10 seconds and that was it.  Done. 

Finally, back to the itching theme...  I was told when I got the catheter out to expect an itching or burning sensation in my urethra, and I do, especially after urinating.  But there are other times it occurs, too, and that itching tells my brain it's time to drain my bladder even when it really doesn't need to be.  It's frustrating trying to combat that sensation while trying to retrain my muscles.

Day 69 - Tired

I'm tired.  That's the best way to describe today.

I'm physically tired from not sleeping well last night, and I'm emotionally tired from this whole experience.

I did manage to throw a couple of loads into the laundry this afternoon and also pulled my truck into the garage after last night's warmer temperatures and rain got rid of 95% of the snow left in the bed.  I wanted it back in the garage before the next snowfall--a trace forecasted for tonight and 3+ inches for Thursday.

Based on just moving the truck 30 feet, I can tell that I'm not quite ready to go on one of my infamous road trips--or even a trip to Kroger yet.  Of course, with all the food that friends and neighbors have brought over in the last few days, I don't think I'll need to go to Kroger until March.  Seriously.  If I do, it will be to buy more freezer containers to store all of this good stuff.  Thanks everyone! 

*     *     *

Just for grins and giggles, I hopped onto my health insurance company's website to see all the claims processed for this little journey through cancer.  So far, the total is right around $70,000, and I didn't see a claim from the surgeon yet.  (The hospital bill alone was at $53K.)

Speaking of the surgeon, I return on Thursday, 10 February to have my first post-surgery PSA blood test.  Those results can be turned around pretty quickly, so I expect that I might have them as early as the next day (Friday) or the following Monday.

Day 68 - Improving

A better day today.  Still not perfect, but better.

Friday and Saturday nights, the first two nights without the catheter, I slept in the full Depends diapers not knowing what may happen.  Last night, I took a chance and just used the guard in my underwear, and things were just fine.

I can tell that I can stand a little more quickly and a little more confidently each time I try.  Most of the time, I can do it without any leakage which is a good thing.  In fact, I felt confident enough this afternoon to go for a little walk up and down my cul-de-sac (two laps).  Nothing happened.

I do want to become more and more active as time goes on.  I actually think that it will help train my bladder to expect certain kinds of movements (steps, walking, standing, sitting, getting into/out of a vehicle, etc.) and it will learn to compensate for each over time and with repetition.

If it weren't for these small signs of progress, I would be quite depressed right now.

While getting the catheter removed was a great step forward physically, I don't think I was expecting the psychological kick in the pants that came with the new adventure of incontinence.

Even with the catheter for ten days, I felt as though I was making forward progress with my recovery each day.  Now, it feels as though I've been pushed back on my recovery at least a week, and that I'm almost starting from scratch.  I know that's not the case, but emotionally, it's been an unexpected setback.

I know that things will continue to improve with each day, and as long as they do, I should get back on emotional track.

*     *     *

A friend from work stopped by for lunch today, and another friend will be bringing dinner by for me this evening. 

I've yet to try to drive, and I don't think that I'll give it a try until the middle or end of this week.  We'll see how confident I feel about being away from home for any extended period of time (and an hour or so would be an extended period of time for me right now).

Day 67 - Strange

What a strange day.

It started with several runs to the bathroom (let's just say that the Percocet that I stopped taking isn't constipating me any longer and leave it at that), and then a feeling of being chilled.  No fever to cause the chills.  In fact, my temperature was my typical below normal--97.1. 

By midday, I was up and about around the house feeling better sitting up for a while, and then laying down for a while.  The pain from the incision points is truly minimal at this point.  Again, if I sit funny or twist in a funny direction, they'll remind me that they're there, but on the whole, it's pretty much behind me.

As far as the incontinence goes, it seems to be getting better.  When I stand (which is when I had experienced the majority of my problems yesterday), things were better today.  Not perfect, but better.  Fewer and smaller squirts.  I really try to control my bladder sphincter through my Kegel exercises when standing. 

I probably look funny, because I'll stand in a somewhat bent position, tightening my pelvic floor muscles, and most likely have a goofy look on my face as I stand there, waiting to be sure that nothing will happen.  The first three or four steps are also taken quite gingerly.

I really had planned on getting outside and taking a walk down to the end of the cul-de-sac today, but that wasn't in the cards.  Maybe tomorrow, weather permitting.

Day 66 - Not so Fast

Be patient.  Be patient.  Be patient.  That's what I keep telling myself.

*     *     *

Last night--the first without the catheter--was a dry night.  That's good.  Although I have to admit that I got up to pee about 4 times last night to help make sure that I didn't have an accident in bed.

It was great to be able to roll around in bed as I slept, and not have a certain key part of my anatomy tied off to the nightstand!

Today has been an exploration into what happens without the catheter in place.  I find myself moving much more slowly and gingerly than when I was catheterized, not knowing what's going to happen with each step, each seat taken, or each time I stand up. Sometimes things are just fine; sometimes there's a little squirt into my guard.  I certainly don't wish for the catheter back, but this definitely seems to be slowing my foward progress.

Be patient.

On a positive note, it's not as though I have no control over my bladder whatsoever.  I do.  I can sense when it's getting full and when I have to empty it (although, I will have to admit that that sensation isn't quite as pronounced as it was before the surgery).  The most frequent time that I have a little squirt is when I stand up from a seated position.

Finally, having the catheter posed its own set of personal hygiene challenges; having minor incontinence poses a different set of challenges.  I do feel pretty confident, however, that I can get by with using just the guards in my regular underwear instead of having to wear the full-blown diapers based on what's happened in the last 24 hours.  That will make things simpler.

As predicted, now that there's no tumor pressing against my urethra, my urine flow is much stronger--as if I were 16 again.

Now that the catheter is out, I can resume my Kegel exercises, and I've been doing them several times during the day.

I really am doing my best not to get discouraged by the incontinence, recognizing that I'm only a little more than 24 hours into this next chapter.  I know it will get better.  I just have to keep doing my exercises and be patient.  Again, some guys regain control in weeks; others in months or even a year.

*     *     *

I've removed the Steri-strips from all of my incisions and it feels great to be free of any adhesive tape stuck to my belly.  I've also not had a Percocet since last night.  There's some occasional pain depending on how I sit, but it's tolerable.

*     *     *

A couple of neighbors popped in for a visit this morning, bringing some homemade goodies for me to munch on as I continue my recovery.  Thanks!

Day 65 - Freedom!

The catheter is gone!!  Hallelujah!!

So the majority of this post will be pretty descriptive...  Sorry.

Unfortunately, last night was not a good night for sleep for me.  I don't know if it was the anticipation of getting rid of the catheter or something else that kept me up, but I don't think I fell asleep until 2 AM.

I was out of the shower by about 8:30 AM and getting ready for the 40 minute drive to the office by changing from my overnight urine collection bad to my leg bag.  That never was a fun process--always the risk for a big mess if I let go of the wrong hose at the wrong time.

A friend drove me to the doctor's office and we arrived around 11:30 for my 12:00 pm appointment.  I was in the examination room within ten minutes of arrival.  The nurse had me lie down on the table and disconnected the drainage bag from my leg before draining the saline solution from the Foley catheter that inflated the little balloon in my bladder that held the catheter in place.

She then told me to take a deep breath and exhale.  When I exhaled, she would pull the catheter out.  Fun.  I inhaled; exhaled; and she pulled.  "Hello!!"  Yowza and it was out.  And what a good feeling!

The doctor came in and talked with me on how my recovery was doing, examined my incision points, and said that everything was looking good.  He told me to immediately call if I wasn't urinating, as that would indicate a serious blockage that would have to be taken care of.  He said that I should come back in four weeks for the first post-surgery PSA.

Before leaving, I was given an antibiotic to take today and tomorrow to prevent any urinary tract infection after the catheter came out, and a pack of Cialis.  Taking the Cialis now will help with the redevelopment of sexual function later.

Once the doctor was through I put on my first pair of Depends (funky!) and got dressed.  We were out of the office by noon and headed home.

I had no idea what to expect.  Would I fill my Depends during the trip back?  Would there be any leakage at all?  Not a clue.  (I did bring a towel to put on the passenger's seat in my friend's car just in case I sprung a leak.)

The good news: Nothing happened on the way home.  Nadda.

However, when I went to get out of the car, I could feel a small squirt of urine hit the Depends--stress incontinence. 

It's nearly four hours later and I've peed a couple of times and had one other episode of stress incontinence (very small amount of urine).  I suspect that I'll be able to use the protective pads rather than the full diapers.  The exception might be at night.  I'll probably try a full Depends for tonight and see what happens.

Before pulling out the catheter, I told the nurse that I was having a slight burning/tingling feeling at the end of my penis, and that when I strain to have a bowel movement, a little urine leaks out outside the catheter.  She said those were both very good signs that my bladder is ready to go back to doing its thing on its own.

So it's great to be rid of the catheter; I just need to adapt to the latest leg of this journey now.  They reminded me to continue with my Kegel exercises and to be patient as I regained control over my plumbing.  I'll do my best.

Day 64 - Anticipation

It was a pretty quiet morning here.  The systems continue to function as intended and the pain continues to diminish, so I'm beginning to spend more time sitting upright.  Still, there are limits before my belly says "enough."

A coworker stopped in for a nice lunchtime visit.  Afterwards, I found myself a bit tired, so I crawled into bed and the next thing I know, it was 3:30.  I guess I needed the sleep.

I'm soooo looking forward to the catheter removal tomorrow, if for no other reason than because I'll be able to sleep on my sides again without fear of tugging on it in the middle of the night.  Of course, the whole freedom thing ranks right up there as another reason to anticipate its removal.

After the nap, I called a couple of friends to update them on my status and progress.

Aside from that, there's really not much else to report.

Day 63 - Solo

My sister returned to Chicago this morning, which means that I'm flying solo for the time being.  That's fine.  I may not be as efficient doing things around the house as when I'm 100%, but I can do most things okay.  I can tell that I'm not ready to lift or drive yet--just enough pain in the incision points to say "Hey, Dummy! Knock it off!"

Before she left this morning, my sister threw a couple of loads in the laundry and hit the grocery store one last time.  I should be good into early next week.

A friend from work stopped by this afternoon for the first time, and we got caught up on my story and what's been happening while I've been away.

A group that I work with sent me a get well card that included 20 things to do while recuperating.  I just may start working on that list to entertain myself.

*     *     *

GRAPHIC BIOLOGY AHEAD:

My systems seem to be getting back to their normal selves again (nearly clear urine, regular BMs); my incision points are healing without infection (although one has a nice bruise around it); the pain is steadily decreasing; and I'm more than ready for the catheter to come out.

I did call the nurse at the surgeon's office this morning to confirm what I needed to do in preparation for the catheter removal, as well as what I needed to bring for after it was removed (i.e., Depends).

Interestingly, she said that most guys can leave after having the catheter removed with just a pad in place to catch any leakage.  Given that I have an hour ride back from the office, I think I may be a bit more cautious and go the full Depends route till I figure out what's going to happen and how much bladder control I'll have in those first hours/days.

One other thing that I was forewarned about before the surgery was the fact that blood will leak out the urethra outside the catheter tube when I strain to pass gas or have a bowel movement.  I wasn't sure if that would be a controlling factor as to whether the catheter can come out or not, and apparently it's not.  (The volume of blood is down from what it was a few days ago, but it's still there.)

So one chapter on this story is coming to a close (the surgery) and the next is about to start (life after surgery).  Let's hope it's well-written with a happy outcome.  Being significantly incontinent could really make for a lessened quality of life.

Day 62 - Resting

Funny observation: The first couple of nights after getting out of the hospital, I wanted to follow my routine of going to the bathroom to empty my bladder before going to bed.  "Oh.  That's right.  I don't have to.  It will empty automatically."  I guess there is one advantage to being catheterized after all.  Otherwise, it's a pain in the butt (metaphorically). 

Perhaps I should suspend the Percocet for a day and take this two liter drainage bag for a spin at the local watering hole and forget about "beer rental."  Nah.

*    *     *

Today I continued to share the good news with others that I didn't get to yesterday.  (Good thing I doubled the minutes on my cell phone plan last month!)  I also just paced around the living room to get my exercise and had another visitor pop over at lunch time.

I think all the excitement of the last 48 hours caught up with me because I landed back in bed by mid-afternoon for a nice little nap.  I probably need to ease up a little because I can feel a little more pain at a couple of the incision points today.  Don't want to overdo it and blow a gasket or something like that.  Still, the pain is relatively low (2-4 out of 10) and I don't want to be a complete wuss about it either.  When I'm sitting, it's the worst.  I'll find the right balance.

I do feel comfortable enough to be on my own, so my sister will be heading back to her family and job in Chicago tomorrow, weather permitting.  Before she leaves, she'll do a couple of loads of laundry and make one more run to the grocery store to get me stocked up enough to last me into early next week.

With the catheter coming out on Friday, I'll be one step closer to being able to drive on my own.  It all depends on my pain level and my ability to stomp on the brakes if necessary.  I suspect that by the middle to end of next week, I should be mobile again.  In the interim, I may need an assist to run to the store for me.  I'll fire up my coordination spreadsheets and put the call out if and when its needed.

*     *     *

I had a little surprise after getting out of the shower this morning.  I'm four pounds HEAVIER than when I went into the hospital!!  I hope my scale is acting up or it's all the extra hardware that I'm sporting around, because if it's not, that's truly depressing.

Coming out of this, I really want to turn over a new dietary leaf, eating healthful foods that I can control the contents and quantity of.  My doctor says that colon cancer is very closely related to prostate cancer, and if you have to have the cancer life experience, I only want to deal with it once. 

So that's it for today.  Time to fix dinner.  (Irony, eh?)

Day 61 - Happier Day

I just spoke with the surgeon.  The pathology report showed that the cancer was confined to the prostate and had not spread.  The lymph nodes were clean, too.

I have to go back in 4 weeks for a follow-up and my first post-surgery PSA test.  If the PSA reading is zero, that's more confirmation that the cancer did not spread.  However, if it's still elevated, there may be cancer still in the body someplace that the pathology didn't see.  So a little more waiting, but today's report was a huge step in the right direction.

Time to wash down a Percocet with a celebratory beer!  (Not!)

Day 60 - Happy Day

Last night was perhaps the best night of sleep that I had since this journey began on Day 1.  It was heavenly.  I only hope that I have more and more like it going forward.

The other thing that was bordering on heavenly--and I apologize for being graphic--was having my first real post-surgery bowel movement.  It appears that all systems are functioning as they should once again.

*     *     *

Several weeks ago, I told a fellow committee member at work about my cancer to let her know that I would be missing a few of our committee meetings after the New Year.  As our December meeting started, another member complained about it being her birthday and about getting another year older.  I looked at the first member who knew about my cancer and simply said, "Any birthday you can celebrate is a good birthday."  She nodded in understanding and approval.

Well, today is a good day to celebrate--it's my 53rd birthday!  And I'm counting on it being the first of many more to come.

I was shocked when my brother-in-law showed up at the doorstep around 10:00 AM, having driven from Chicago to get here.  It was a great surprise!

So I've been spending the entire day out of bed, enjoying it with family and some friends who stopped by.  We even ordered a special dinner from a local restaurant to celebrate, and I may have overdone it just a tad.  We'll see how well I sleep tonight.

Tomorrow should yield the pathology results from the prostate and lymph nodes.  I have know idea what time the doctor will call, but as soon as I hear something, I'll make sure I get the word out.

So I couldn't have asked for a better birthday under the circumstances--family, friends, and a BM.  :-)



Day 59 - Up and About

First things first...  Two Percocets do not make you perkier. 

All along, I had been managing my pain with one pill, and it was doing its job quite well.  But last night I slept through my 1:00 AM dose and could definitely tell this morning that the pain was there.  I popped 2 pills after lunch to try and get it back under control, but learned that two pills gave me a bit of a buzz.  Not fun.

I was up at 7:30 this morning and managed to stay out of bed all the way until 11:30, which was good.  Being up and around is definitely better than spending the day in bed. 

I continue to do laps around the house (inside, of course) and this morning I added the stairs to the basement to my route.  That took a little more effort and energy, and by midday I was ready to go horizontal for a while.

A little nap in early afternoon and I was ready for my first visitors by 3:30 PM.  It was good to spend some time with them again. 

Dinner tonight was more of the homemade soup that was delivered by my neighbors--thanks!  My appetite is slowly getting better with each day and I'm beginning to return to a better eating pattern/schedule.  Part of the reason that it's been so slow to return is the bloating after the surgery.

When they poke holes in you for the robot arms to enter your body, they fill you will gas to essentially inflate you to get your body wall away from where they're doing the surgery.  When they're done, they sew you back up and some of that gas is trapped inside you.  Eventually, it filters its way into your digestive tract and causes a lot of pressure.  There's really no room for food.

The surgeon told me to expect to be bloated the first 3-4 days after the surgery, and he was right.  The first two days, I was in agony from the gas pressure--it caused more pain than the incisions did.  For biological reasons unbeknowst to me, getting rid of the gas in those first days is very difficult.  (You remember the old joke, "How do you spell relief? F-A-R-T"??)  It's amazing how expelling that gas made my comfort level go way up.  The new simple joys in life...  :-)

I still find it difficult to sit for any extended periods of time, so I'm actually standing at the kitchen counter typing this out on my laptop.  It's getting better, and the more I'm up and about, the more it will improve.

*     *     *

When I started this blog, I was just using it to vent and keep people in the loop on what was happening.  But, over the last 60 days, I've viewed this as an educational tool as well.  It's certainly not meant to replace the advice of proper medical personnel, but I hope that it gives others going through this insight from one patient's perspective.  It's the silver lining in this cloud.

So keeping with that educational theme, you may start to see more very detailed and very graphic descriptions of what I'm experiencing after surgery.  I'll identify those descriptions in advance to allow those who don't want to know to have the opportunity to skip reading that part of the post.

*     *     *

So that's it for this Saturday night.  Time for my next dose of Percocet.

Day 58 - Getting Better

So it's near the end of my first full day at home, and things have been going well so far...

It's still difficult for me to sit up normally--the pain in my belly gets intensified--so I spend most of the day in bed.  The new plumbing makes that an adventure, too.  Normally, I like to roll around in my sleep, and now I can't without risking pulling on the catheter.

During the day, I do get up and wander around the house for 30 minutes or so every 3-4 hours.  That helps prevent blood clots and pneumonia, plus it really does make me feel better.

My appetite has been slower coming back than I expected, and I've been eating a little more each meal.  I'll have to wait a week or two to get to that ribeye that I asked for in post-op.

Earlier today, I brought my laptop into my bed and tried using it off to my side.  (Putting it on my lap with five incisions and additional plumbing isn't an option right now.)  As I rolled onto my side to get better access to the keyboard, I sprung a leak.

That's the side that my drainage hole was on--a hole in my abdomen to allow fluids to drain while in the hospital--leaked fluid onto the gauze covering it.  No signs of infection--just the geometry allowed it to leak, I guess.  I was told to expect that to happen.

I'm getting back into a more normal sleep pattern, even though I was wide awake around 3 AM today.  A little catnap this afternoon helped me get caught up on some much needed rest.

It is good to be back home.  The hospital was not a place for rest.

It's funny how the universe puts things in perspective.  There's always someone with a worse situation than yourself, and that was the case with my roommate.  From what I could tell, he had advanced lung cancer that was to the point where his body couldn't prevent the food or drink that he ate from entering his lungs.  Of course, that made him cough, moan, and gurgle day and night, and the nurses were in the room nearly every hour attending to his needs.  That made my getting the rest that I needed for my own recovery next to impossible.  I know that's a selfish perspective, and I really tried to direct my frustration more at the hospital and nurses than at my roommate.

As far as upcoming events are concerned, the pathology report is scheduled to be available on Monday.  We'll know whether the cancer was confined to the prostate or if it has spread beyond.  The catheter will come out a week from today.  Lori and I will have to figure out how long she's going to need to remain here, but having her here has been a great help.

So that's about as much typing as I can do for now.

Day 57 - Back Home

Hi All,

I’m back home a tad sore and exhausted.  Had a roommate with a horrid condition that kept me up ALL night last night.  I feel sorry for the guy, but I didn’t sleep all that much. 

So please give me a day or two to get settled and back into a routine.

Thanks for all your thoughts, prayers, and support!

Dan

Dan Here

hi  everyone.   blogging from my hospital bed.

yes, as lori said, i am spending a second night here.  they want to make sure that the plumbing is working as it should.

having fun annoying the nurses, which probably isnt wise as theyre the ones with the needles.

hopefully ill get outta here tomorrow.  anyone want to bring me a six pack to drink so i can pee more...

Day 56 - Dan Update---Wednesday, January 5

This is Lori again.....

Some things don't always go as planned. They said Dan should be able to come home today around 2PM. Well, that isn't going to happen. Apparently his urine output is not as good as it should be considering all the IV drips. Also, they asked him if he takes oxygen at home. They said your "oxygen" level is low, we have to put you on oxygen. So, he will not be coming home tonight. I ran back to his home to pick up his cell phone and run it back up to him. I thought I would blog an update before I leave to go back.

I don't know how to read or post any of your comments out there, so that will have to wait for Dan's return.

A last comment before I run out the door. Dan looks and feels good (a 1000 times better than last night), so hopefully, this is just a hiccup!

We both appreciate all the support and prayers being sent our way!

Lori

Day 55 - Surgery Day

I left the hospital at 11:15 PM.  Surgery was delayed for several hours due to an emergency.  Dan was scheduled for surgery at 12:30 PM, but they did not take him until 3 PM.  I was given a pager and started the long wait. Waiting is not one of my stong points.

At 3:50 PM I was given an update that they started the robotic operation.  At 5:30 PM an update came in from the Doctor that "it was in the bag"....meaning that they removed the prostate???  After that, I didn't get anymore updates until 8 PM when the Dr. came out himself to talk to me. He said it went as planned, but took all of 4 hours.  He was a very nice Doctor.... even asked me if I had dinner.

By 9:30 PM, I was still waiting. Actually, by now, I was the ONLY person in the waiting room. I decided to pick up a phone on the reception desk (all workers were now gone) and behold, a voice at the other end said "recovery".  I told them that I was Dan's sister and was still waiting. They told me to come back.  I made my way through a few double doors and then I spotted my brother.  Well, he sort of looked like my brother. They had to invert the table when operating, so his face was now swollen. He was awake, asking for a rib eye steak and water. He reminded all of us every 15 seconds or so that he had not eaten for over 50 hours now! He also told us "cancer sucks!" The nurses were great and Dan kept up his humor..even though he was clearly in a lot of pain.  He reminded me of our Dad...always joking around. It was another hour before he got up to his room. His nurse in the room gave him the morphine pump and told him to use it!!!  I left him there at 11:15 PM and drove back to his house. I'll return in the mid morning. He is expected to come home tomorrow afternoon.  I expect Dan will continue his blog this evening.

Day 54 - Here we go!

Well, this is it.  All the preparations are done.  The sniffles seem to be abating (yea!) or at least not getting worse, and I've take 2 of my 3 doses of antibiotics.  The kicker--just as with the colonoscopy--is not having any food!!  I'm freakin' starving again!  Nothing to eat since 8 PM Sunday night.  That's 22 hours, 3 minutes, and 22 seconds ago.  Ugh.

My sister arrived about an hour ago.  She's still unpacking.  :-)

One more round of antibiotics for me at 11:00 PM, and then off to bed. 

I'll show my sister how to update the blog after the surgery, but Iwouldn't look for anything until late tomorrow night.

The adventure begins...

Extra - Moving Ahead

I spoke with the surgeon's nurse this morning, and Dr. Cincy didn't seem to think that my sniffles would cause much of a problem for the surgery.  I should plan on coming in tomorrow.

The one caveat to that is if the anesthesiologist thinks there might be a problem, but we won't know that until I'm there.

Day 53 - Hiccup?

Last night I went to bed around 11:30 after watching a rerun of “Saving Private Ryan” on television, and I didn’t have any problem falling asleep.  I was feeling a bit run down, so I closed my curtains and didn’t set the alarm for this morning.

I guess my body needed the rest.  The next time I looked at the clock, it was just after 11:00 AM!  Yikes!

Saturday night I felt as though I was getting a few sniffles and they seemed to persist through today.  I’ve really tried to keep healthy through this, and the last thing that I want to get is a head cold right now.  It may be enough to postpone the surgery. 

If that happens, I’ll be pissed.  There are too many wheels in motion that will have to be brought to a screeching halt—the leave has been approved; I’ve got announcements out and back-ups in place at work; and others have adjusted their schedule to support me (my sister, specifically).

If I’m still sniffling in the morning, I’ll call Dr. Cincy’s office and see what they recommend. 

Up until this development, I’d been doing pretty well.  I really haven’t been getting panicky about the surgery at all, which surprises even me knowing how much of a nervous Nelly I can be.

*             *             *

Despite all that, I moved forward as if the surgery will happen and I did finish some last minute shopping today.  Some fresh fruit and family packs of pork chops and chicken breasts.  I individually wrapped and froze the meat so I can pull it out of the freezer as I need it. 

I also made the leap and bought my first package of Depends adult diapers for when the catheter comes out and I get to regain control over my bladder.  At least they had the little blue prostate cancer ribbon on the package so that if anyone said anything, I could point to it and say, “This is why.”  No one said anything.

*             *             *

So I’m going to call it an early night, get as much rest as I can, and see how I feel in the morning.  I’m supposed to stop eating tomorrow and start the bowel prep at 10 AM, so I’ll try to have a determination by then.  I’d hate to go through all that, take two different types of antibiotics, and then have the surgery postponed.

I’ll do a bonus posting on the blog mid-morning to let you know the outcome.  Nothing like a little last-minute drama to spice up the day, is there?

Day 52 - New Year

The first day of the New Year was a quiet one of just hanging out around the house, updating records for the end of the year; doing a couple of loads of laundry; catching up with some friends on the phone; fixing dinner.   

I do remember having a rather vivid dream about the surgery this morning, so that must mean that I was in full REM sleep.  It wasn’t a bad dream—just observing the surgery from within the operating room, as I recall.

That’s about it.