Week 15 - Back in the Routine

Welcome back!  I’m really not sure for the best way to format these weekly updates, to I’ll just try a chronological summary of the week for starters.  We’ll see how that goes…

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Friday was probably my best day at work all week long.  I had virtually no discomfort in my groin, which told me that I was sore simply from using muscles that hadn’t been used in a while (as well as having had holes poked in them!)  I was walking at a normal pace (early in the week, it was painful to walk too fast), and just felt great.

When I got home, I fixed dinner and decided to throw a load of laundry in the wash (to free up more time on Saturday).  As I went to get my dirty laundry, I was suddenly attacked by an spring-cleaning urge to clean out my closet.

I pulled out clothes and shoes that I hadn’t worn since the Roosevelt administration (Teddy).  Those that seemed to have good life in them (although out of style) went into a bag for Goodwill.  The rest went into my rag bin or the trash.

To celebrate the end of taking my antibiotics, cleaning my closet, and the end of my first week back, I opened a bottle of Sam Adams—my first since the holidays.

*          *          *

With my chores out of the way Friday night, I decided to head to Indianapolis on Saturday for the first time since Christmas.  I did it in the name of research.

I’m still a bit nervous about being out for extended periods of time with my mild incontinence.  I want to make sure that nothing silly will happen on longer trips, so each time I go out, I try to make it a little longer just to see what happens.  So far, so good. 

I’ll have to admit that when I see a restroom, there’s a good chance that I’ll take advantage of it while I’m there.  I’m probably being a bit too cautious, but there are still a few occasions where my bladder tells me “Go NOW!” and I really don’t have a lot of time to find a bathroom.

*          *          *

Sunday was a pretty quiet day around the house.  It got off to a slow start. I woke early to use the bathroom, and the next time I looked at the clock, it was after 11:00 AM!  Yikes.  I guess that first week of work and activity caught up with me.

*          *          *

Work on Monday was pretty much the same as it was 8 weeks ago.  I opened my spreadsheet at 8:00 AM, started doing updates, and had my report out by mid-afternoon.  I’m not sure if it’s good to be back in the routine (rut) or not.  J 

Monday night was a bit hellish.  I just kept running to the bathroom: 12:00 AM, 1:15 AM; 2:30 AM; 4:30 AM.  When the alarm went off at 6:30 AM, I knocked it across the room and rolled over for a few extra minutes of sleep.  Next thing I know, it’s 8:00 AM.  Ooops!

Not sure why I had to run to the bathroom so many times…  I stop drinking in quantity after supper just to prevent that very thing from happening.

*          *          *

After Monday night’s episode, Tuesday was a long day at work, especially considering there were two hour-and-a-half long meetings and another hour-long meeting in the day.

The day ended with a run to Kroger to restock groceries and another load of laundry (I try to do a load a night during the week so I don’t have to worry about it on the weekend).

*          *          *

Wednesday started with my weekly meeting (there’s that routine (rut) thing again), and lunch was spent with a friend trying to solve the world’s problems.  No solutions.  Yet.  Another load of laundry in the evening (whites).

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And that brings us to today—Week 15.  It was another day of conference calls and meetings.  But I did try one thing different.

Many of my little incontinence episodes through the week occurred when I stood up from a seated position.  To try and minimize them, I had been standing up rather slowly, doing my best to follow my Kegel exercises and contract my muscles to prevent anything from happening.

Last night and today, I said the heck with it and just stood up.  Guess what?  I seemed to have fewer incidents.

And I'm wrapping up the evening with a load of colors in the laundry,

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All in all, it was a good week.  Things seem to keep getting better, even though the pace is slower than I’d like.  I’d also like to figure out a way to keep from running to the bathroom all night long—that’s getting a bit old and quite tiring.  Patience.

Week 14 - Lessons Learned

You’ve probably noticed the change in title for this post.  Instead of it being Day 99, it’s Week 14. 

It’s time to bring these daily missives to a close.  I mean, really.  Who’s going to care about how many spreadsheets I created at work or how many minor or major incontinence episodes I had in the day?  Because that’s about all that I’ve got to write about at this point, and I just don’t think it would be good reading. 

Besides, I need to get out from behind this damned computer and start living life—don’t ever squander second chances!

However, because I do have a loyal following, I’ll write weekly updates (unless there’s a silly relapse, then daily updates will return).  Because I learned of my cancer diagnosis on Thursday, 11 November—14 weeks ago today—I’ll do my weekly updates on Thursdays going forward.

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I started this blog for one reason: To allow me to vent and process the fact that I had cancer.  I didn’t care if one person or a hundred persons read it; the act of writing helped me think more clearly about my situation.  The fact that there have been nearly 2,500 page views from 11 countries humbles me.

As time went on, the nature of the blog shifted more to education and information sharing—perhaps too much information sharing according to a few of you.  But that was my reality at the time and you needed to understand what I was going through.  I know that reading my blog caused at least one person to make an appointment with his physician to get checked.  That, to me, makes it worth every word.

So what have I learned through this little journey?  Wow.  Where to begin?  I’ve learned that:

• Family, friends, coworkers, and neighbors come through when you really need them the most, and for that, I will be forever grateful.  Thanks everyone!
• I can’t control events, but I can do my best to control how I react to them.
• Fear and anger consume far too much energy that should otherwise be spent on getting better.
• I had to be my own advocate, researching as much as possible to be an educated patient.
• There was such a thing as doing too much research, and that I had to just stop at some point and make decisions with the knowledge that I had.
• Humor—however misguided or irreverent—had to be a part of the cure.
• This wasn’t all about me.  Those around me reacted differently and I needed to recognize, understand, and embrace that by being sensitive to their needs.
• Patience is a virtue (although not easily practiced).
• Talking openly about cancer makes it easier to deal with having cancer.
• There is no shame in having cancer.

So what will I do with my second chance?  There are plenty of clichés to tell me what to do:  Stop and smell the roses.  I hope you dance.  Live like you were dying.

Well, roses make me sneeze, and I have a court restraining order against me dancing (I sent three people to the hospital the last time I did), so that leaves living.  I think I can do that.

This journey showed me how important relationships are, and that’s something that I want to keep working on—to be a better brother, cousin, uncle, friend, neighbor, and coworker. 

It also showed a relationship gap.  I’d like to find that special someone to just share life’s experiences with, and who will be there in sickness and in health.  A line from the book, “Into the Wild,” said that “happiness isn’t real unless it’s shared.”  I’m beginning to believe that more and more.  So in addition to building on my existing relationships, I want to find the right person to share my life with. 

The final thing that I want to do with my second chance is be more impulsive (without being idiotic).  That will be the most difficult.  Don’t analyze.  Don’t evaluate.  Just act.  Do it.  Live.

Okay.  I’m not foolish enough to know that I can delete Microsoft Excel from my computer today without going through severe analysis withdrawal.  But I can at least spend only a tenth of the time doing my analysis and then go act.

Those are my learnings from having cancer.  Profound?  Probably not.  But I will close with one more cliché from a wise woman in my life:

“Life is not a dress rehearsal.”

(Thanks, Mom!  I should have listened sooner!)

*          *          *

Okay.  I can’t close without at least one last comment about how things went today—actually, last night.

I went from 11:00 PM to 6:30 AM without having to get up to pee once!!  Woo-hoo!  That beats almost every other night where I’m up 2-4 times a night and sleep is a minimum.  Let’s hope for two nights in a row.

See you next Thursday!

Day 98 - Warm

Warm.  But not from a fever.  From the wonderful 65 degree weather here!  Time to open some windows.

*     *     *

Again, no fever through the day, so that's reassuring that things are getting back to normal.  Also reassuring was the fact that the discomfort in my groin continues to decrease. 

I find that there's a little more spring in my step as I walk (I still can't walk at my normal "supervisor sprint" pace that I'm used to), and that standing up from a seated position is getting easier.  I'm also having fewer incontinence episodes when I stand (still requires deliberate effort to make that happen, but it's happening!).

So it's time to get away from the keyboard, open some windows, and perhaps even enjoy a bit of the evening outside before the sun sets.  Ciao!

Day 97 - Groovin'

Back in the groove.  Just about.

It was a good day at work today, getting back into the swing of things.  Fortunately, I had only one meeting today and having the extra time to get caught up and kick off a new project was good. 

*    *    *

I haven't had a temperature above normal since 10 PM Sunday night, so that's a good sign.  Perhaps I had a bit of a bug; lots of people say there's one going around.

The discomfort in my groin is still there, though, but it is decreasing.  I'm beginning to think that perhaps all the new activity was the cause of some of it.  But I still won't rule out fluid build-up quite yet.

Interestingly, I didn't hear from the doctor today, which makes me wonder if he got my note from Sunday night.  I'll call tomorrow just to let him know what's been going on (and to see if his staff delivered the message).

*     *     *

Hard to believe it was six weeks ago tonight that I was coming out of surgery recovery asking for a ribeye steak.

Day 96 - Survived

Apparently I was really anxious to go to work today, because for some reason I woke up around 4 AM and couldn't fall back asleep.

I made it to my office on time and got settled in after not having seen it since 23 December.  It actually was a pretty productive day--along with some of the "Good to see you back at work!" socializing that went on.

I did last the entire day, which was a good thing.  Although, I'll have to admit that I'm a bit zonked from the early wake-up time and from just being up and about.

*    *     *

As far as the fever is concerned, my temperature has been at or below normal since 10 PM last night.  That's good, too.

The discomfort in my groin was less today than it was yesterday, and that's another good thing.  By the end of the day, though, I could tell that it was beginning to come back.  But this discomfort is a little different than yesterday's.  It's more in the area of the drain holes, and I'm wondering if all the walking that I did through the building is what's caused the increase. 

It seems pretty mild when I'm sitting, but when I walk I can feel it more.  And when I walk, my speed is limited because the faster I go, the more discomfort there is.  I suspect that my muscles just aren't used to the activity.  Walking through my house is not nearly the same as walking through our facility.

So I'll continue to keep an eye on things and document changes as they occur.

Day 95 - Wondering

So I'm wondering if this is really behind me.

After posting yesterday's comments, my fever returned and peaked at 99.7 early last night.  So far, since midnight, the highest it's been is 99.0.  That's moving in the right direction.

The other thing that's been bugging me is this discomfort in my groin.  Initially, I thought it was from the drainage tube opening, but now I'm not so sure.  I'm wondering if it's lymph fluid building up again.

The one thing that hasn't happened yet is an increase in incontinence.  When I was in the hospital with the infection, the fluid was putting so much pressure on my bladder that I had little control over it.  I'm really hoping that I don't return to that state again if the fluid is building up.

Needless to say, this makes going back to work tomorrow questionable.  I'll play it by ear, and I'll also contact the surgeon to let him know what's happened since pullng the drain on Thursday.

*    *     *

Even with all that going on, I did manage to run out and buy some new pants today (I've lost 20 pounds since the surgery).  The weather has been great--sunny, warm, and in the upper 50's.

Day 94 - Goofy

What a goofy day. 

Actually, it probably started last night.  I was a bit concerned because I was running a slight temperature (max of 99.6) and I thought, "Not again."

I turned the lights out around 10:30 PM and fell asleep pretty quickly.  Being up till 3 AM the night before probably had something to do with that.  I slept well and each time that I got up to use the bathroom (twice), I checked my temperature.  It was hovering right around 99.0.  I'd fall asleep easily and, the next thing you know, it was 10 AM.

So far through today, my temperature has remained below 99.0.  That's good.  I'll keep monitoring it to make sure there are no signs of the infection returning.

*    *     *

Based on that little scare, I just took it easy around the house today.  I did run to Kroger to stock up on groceries for the week.  That's been about it.  I may try to run out for some fun tomorrow--the weather is supposed to be quite nice--mid 40's.

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And speaking of weather, the groundhog was right.  When I went to check my mail this afternoon, there was a robin sitting on my lawn.  Spring is on its way!!

Day 93 - Real Clothes

It's funny.  After six weeks of wandering around in a bathrobe or sweats and t-shirts, putting on jeans and a regular shirt for the first time is odd.  And constrictive.  I wonder if I can modify the dress code at work for my return...  Hmmm.....

*     *     *

This morning I went to work to drop off my return to work form with my boss and I spent just over an hour wandering around saying hi to people.  It was good to see them all again.  I'm ready for the interaction with real people on a regular basis once again.  Sitting in the house alone for this long does get on one's nerves just a bit.

After wandering through the offices, I went to lunch with a friend to get caught up with her.

*     *     *

Last night was another sleepless night.  I think I was so excited about the freedom from tubes that I just couldn't shut off my brain.  I started to think about all the things that I can do again, both outside of work and at work, and that just kept me going until about 3 AM.  Ugh.  I hope that excitement is behind me and I can get into a regular sleep pattern once again.

*    *     *

As far as the drainage tube site is concerned, it's closing up and beginning to heal.  I'll have to admit that this one seems to be a bit more tender than the first one that was removed for some reason.  I'll keep an eye on it. 

I've also been keeping an eye on my temperature: 98.6.  Let's hope it stays that way through the weekend and beyond.

*     *     *

I'll wrap up the day with dinner at the local Mexican restaurant with friends in a short while.

Happy Weekend!

Day 92 - Tubeless!

Finally!  For 33 of the last 38 days, I've had some additional plumbing coming out of my body.  The surgeon pulled the last drain out of me this afternoon.  Woo-freakin'-hoo!  This will be such a relief.  Now, let's just keep our fingers crossed that the fluid doesn't build up again now that the drain is out.

He wanted me to return in a month for a routine follow-up exam.

While there, I did specifically ask him whether or not the undetectable PSA level meant cancer-free, and he said yes.  I also asked about the chance of recurrence.  Given the particulars of my case, he said there's an 80% chance that I'll be cancer-free at the 10 year point.  That wasn't necessarily a surprise to me; I had read the long-term statistics in my research.

Of course, that means there will be a little cloud hovering over me for the rest of my life, but I don't plan on letting it rain on my parade.  It's just something that will always be there.

Finally, the surgeon also gave me the green light to return to work next week.

*     *     *

Before heading to the doctor, I had lunch with a friend from work at one of the local watering holes.  (And, yes, I skipped their home-brewed beer.)  It was good to get caught up with him.

Day 91 - Preparing

This day was spent just doing odds and ends around the house in preparation for the possibility that I'll return to work next week.  None of it was anything spectacular--just washing linens and other laundry; cleaning bathrooms; and turning my bedroom back into a bedroom rather than a recovery room.

*     *     *

The output volumes for the drain are still pretty flat, so we'll find out tomorrow whether they're good enough to pull the drain from my groin.  I hope so.  But I also don't want another setback, so if it has to stay a while longer, then so be it.

Day 90 - Sleepless

At the beginning of this journey, I spent many nights tossing, turning, and getting very little sleep.  Once I made the decision on the surgeon, the insomnia pretty much went away.  Until last night.

I'm really not sure what happened yesterday.  Perhaps the good news of an undetectable PSA got me fired up and looking forward.  When I went to bed at the usual time, I just couldn't fall asleep.  I tossed, turned, and finally gave up around 2:00 AM, turning on the TV to distract me for a while.  By 3:30 AM, the lights and I were both out.

*     *     *

I posted yesterday's post a little earlier than usual just to share the good news as soon as I got it.  I didn't mention that I ventured out for a short while yesterday afternoon to run to the bank, drop some bills off at the post office, and get a haircut. 

Boy, did I need a haircut.  (Yes, even with as little hair as I have, I still needed one desperately.)

That was the one thing on my pre-surgery checklist that I didn't get to.  The last time my hair was cut was mid-December.  After nearly two months, it was over my ears and very scruffy on the back of my neck.  I couldn't stand it any longer.

I feel so much better today because of it.

*     *     *

I had a couple of coworkers stop by for a visit at lunch today.  It was good to see them again and get caught up on some of the happenings in my absence. 

Survivor

Day 89 - Undetectable

"Great news.  Your PSA was undetectable."

So that's how the surgeon started his conversation with me today.  In the excitement of hearing the good news, I didn't specifically ask him if he would call me cancer-free, but I pretty much would at this point.  Between the post-surgery biopsies of the prostate and the lymph nodes, and now the news of an undetectable PSA, I'd be willing to say with about 99.5% confidence that I'm cancer-free.

That makes today a pretty good day.

I'll have to do follow-up PSA tests every six months for the first two years, and then yearly after that.

I suspect that I'll always be wondering whether or not I have cancer going forward.  I guess that's one of the side effects of having cancer in the first place.

*     *     *

The drainage output remained steady over the weekend: 40, 30, 30, 30, 40, and 30.  So we agreed to keep my appointment for Thursday afternoon and monitor the output between now and then.  With a little bit of luck, the drain will come out Thursday.

*     *     *

I continue to progress with controlling the incontinence, too.  I'm finding that I'm having fewer incidents when I stand (although it does take some effort to prevent them from occurring), and that the volume of the "squirts" seems to be decreasing as well.  Of course, a good sneeze or cough will cause an incident almost all the time, but again, a small incident.

Day 88 - Overslept

For one of the first times in a long time, I found myself sleeping in way longer than I wanted or expected.

I woke up for my 8:00 AM dose of antibiotics and crawled back into bed after taking them.  Then next thing I know, the clock read 11:10 AM.  Yikes!  I certainly didn't intend for that to happen, but I guess I needed some extra sleep.  I certainly don't want to get on THAT schedule the closer I get to returning to work.  (Keeping an optimistic attitude about the drain output volume!)

Speaking of output volume, it's remained at 30 ml every 12 hours for the last three cycles.  That's good.  For a while before that, it was creeping back up to 40 ml.  Looking at the bag right now (5:30 PM), I'd guess that the 10:00 PM (or end of Super Bowl) reading will come in at or below 30 ml. 

I'll hold off sending my readings to the surgeon until after the 10 AM reading tomorrow morning.  That way, he can call me back later in the afternoon and perhaps he'll have the PSA test results by then.  We'll see.

*     *     *

I'll have to admit that it's much better to have just one drain instead of the two.  It's a lot easier to sleep and get around the house.  The other thing that really helps is that he removed the original dressing that was over both of the drains.  Not having that any longer feels a lot better, too.  Plus, I don't have to tape a Ziploc bag over my belly in order to take a shower now.

*    *     *

Well, time to clean up the kitchen after an early dinner in advance of tonight's Big Game.  I can't say that I'm rooting for one team over the other, but my Midwestern roots will probably have me pulling more for the Packers than the Steelers.  (Sorry, CX readers!)

Day 87 - Calm

Today was a calmer day than yesterday, emotionally.  I accepted the fact that I have to keep this tube coming out of me for a while longer, and have been able to navigate better without trying to rip it out of me as I did yesterday.

I haven't detected any issues because of the one drain being removed.  The hole seems to be healing nicely already.  The output of the other remains about where it was yesterday and the day before.

It was a snowy day--a good day to curl up with some magazines that friends and the mail dropped off.  Some are travel magazines, and I'm looking forward to the day where I can feel confident enough to plan my next vacation.  To where?  Who knows. 

So that's it for this snowy Saturday.

Day 86 - Halfway

Steer clear of me right now.  You've been warned!

*     *     *

Let's just say that the visit to the surgeon didn't quite go as I would have liked.  In short, he removed the right drain but left the left one in place because the drainage output was still a tad too high.

It does feel good to be rid of the one tube and bag, but I'll have to admit that I'm not thrilled about having the other one still in me.  It's such a pain in the ass to maneuver with (I hooked the hose not once but twice on doorknobs today and cursed like a sailor--loud and long).

The plan?  Keep monitoring the output through the weekend and into early next week.  When he sees numbers that he likes, he'll bring me back in to have the drainage tube removed.

I did ask, "What if the volumes don't go down?"  The first part of his response was that time is on our side; I just need to be patient.  But the second part was something along the lines of, "I've never had to go back into someone, but..."  So it's a possibility that, if this doesn't diminish on its own, that I may have to go back in for a follow-up surgery to correct the problem.  That would suck.

One other thing that he did do during the visit was draw blood for my first post-surgery PSA test.  Again, if the results come back at zero or nearly so, that's a strong indicator that I'm cancer-free.  If they're higher, then that's a whole new ball game.

This PSA test was originally scheduled for next Thursday, but he thought he would do it while I was there.  I suppose I could learn the results as early as late Monday or Tuesday.

*     *     *

I will admit that it does feel better to be rid of one hose and the large dressing they had over both.  It does make going to the bathroom a little easier.

Heck, I've had tubes coming out of my body for 28 of the last 33 days.

*     *     *

I did drive myself to Cincinnati for the appointment.  The drive went well and it was good to be out of the house again.  I stopped by Kroger and CVS on the way home to stock up on some groceries and renew my prescription. 

Day 85 - Yawn

The day started with a call from the surgeon checking on the drainage output.  He was satisfied enough to tell me to come in tomorrow, Friday, to have the drains removed.  Needless to say, I'm pretty excited about that.  I just hope that nothing happens after they're out that causes any problems.

*     *     *

It was a pretty quiet day around the house.  I was able to throw another load of laundry in the wash, clean up the kitchen and bathrooms a little, and repeat my lazy cat impersonation, sitting in the sunny window watching the snow on my driveway melt for about an hour.  Exciting, eh?

You would think that with all this time on my hands, I'd be coming up with some profound, philosophical thoughts about this whole experience, but I got nothing.  Maybe when we get the first PSA results next week.

Day 84 - Visits

We escaped the brunt of the storm here yesterday and last night.  Lots of wind and somewhere around a quarter to half inch of ice from the freezing rain.  Fortunately, only the cable TV went out for a bit last night, and not the power.  Things are much calmer here today, although it is snowing at the moment.  I don't think we're expecting much accumulation.

*     *     *

I haven't heard from the surgeon yet today, and I didn't expect that I would given that he was scheduled to be in surgery all day long.

I did speak to one of the admin assistants in the office about extending my leave, and she said she'd make sure to leave him a message to contact me tomorrow.

I'll fax him my latest readings around 10:30 PM tonight so that he'll have them first thing in the morning.

*    *    *

I had a couple of coworkers pop in for separate visits this afternoon, and it was good to interact with someone other than through a keyboard.  I'll have to admit, though, that by the end of the second visit, my voice was cracking. I guess I'm not used to talking to anyone for an extended period of time.  I'll have to start singing to myself as I walk around the house.

Day 83 - Icy

It's been a quiet day of just watching the weather and waiting for the main event to arrive.

Last night gave us a nice coating of ice here; the street in front of my house glistens with its coating of ice that hasn't been touched by the city yet.  We're on the borderline for a major ice event this evening, too.  Those to the north and west could wind up with nearly an inch of ice; those to the south and east will likely just get rain.  Who knows what we'll get.

*    *     *

I sent my latest drainage readings to the surgeon this morning about 10:30, but haven't heard from him yet.  We'll see what he wants to do. 

I'll have to remember to talk with him about extending my medical leave/short term disability.  It's set to expire on Monday, and I'm not sure that I'll be ready to return to work then.

So that's it.  Keep the ice away and the lights on, please!