Friday, August 17, 2012

Third birthday since diagnosis

It's my birthday!  I'm 43!  It's wonderful to have another post-cancer birthday to able to celebrate and to be in good health (well, except for my back -- which is _still_ hurting, but getting better by the day).  And, I have some more good cancer news to report.  My Mom had surgery yesterday to remove the tumors in her breast, and the two sentinel lymph nodes they removed were *negative*!  So, that means that she'll "only" be getting the cut and burn aspects of cancer treatment, instead of the full meal deal of cut, burn and poison.  I'm very, very happy that her cancer didn't spread and they caught it early (see? screening WORKS!  Get screened!).
No real big birthday plans.  Pub trivia with some friends last night, happy hour tonight, and just kind of chilling tomorrow with some more friends -- no physical activity.

Bought a ticket to fly back to Wisconsin to check in on my Mom and visit friends and family in between jobs.  Slated to start my new gig September 17, and am really looking forward to starting.  I was wondering how the firm would do in my absence, and it appears that I'm not going to be missed.  They're already hired my replacement.  His name?  Douglas.  How quickly I'm replaced ...


Tuesday, August 14, 2012

Back

This post has nothing to do with cancer.  Just sharing that I threw out my back this morning.  Ouch!  I guess I can tie it in with cancer because I threw it out when I was unpacking the latest deliver of ostomy supplies (which don't weigh much -- the back just went.  It's a problem I have.) 

Pretty immobile at the moment.  Just lying on the couch, popping pain killers, surfing the web and watching the ceiling fan go round and round and round ...

And it's not like I needed this.  The Cycle Oregon bike ride is coming up in about 3+ weeks, and I was really counting on putting in big mileage to get ready for it.  Now ... I dunno if I'll be ready for a 400+ mile bike ride over a week.  I just may have to bail, darn it.

Sunday, August 12, 2012

New job and cancer

Even the best laid plans go awry at times.

I was all looking forward to going part time starting September 1 at my law firm.  Less work.  More life.  More happy.  But then a great in-house opportunity came up on the job boards.  Then a second.  And then a third.  I applied for all of them, got an offer at a small local technology company and took it.  So, come mid-September, I'll still be full time, but at a different job.

I'm excited for the new gig -- I think it's a big step forward for me, a nice challenge, and should restore some work/life balance.  But, I'm concerned about how I feel I'm going to have to tell eventually tell my new coworkers about my cancer.  Why? Two words.  Stoma farts.  In private practice, I have my own office and have lots of privacy.  I can shut the door and let 'er rip.  But I'm going back to cubicle land, where it's going to be  quiet most of the time, there's no way the wayward, noisy stoma fart is not going to go unheard.  I can wear the Be-Band every day, watch my diet, but still -- there's gonna be times when the gas is just gonna fly.  And if you heard the new guy letting 'em rip on occassion, what would you think?  You'd wonder, you'd talk to your coworkers about it, but not confront him about it.  So, I feel like I'm going to have the fess up.  I'd rather have them know that I have an ostomy instead of thinking I'm some guy who has no social graces and just farts all the time.   I mean, wouldn't you?  But then, I'd rather *not* have them know of me of a guy who has been through cancer.  So, what to do?  I'm sure what I'll do is keep it to myself as long as I can, and then spill the beans when I feel its appropriate.  In any event, it's going to be a bit awkward.

Had the same feelings of awkwardness on the backpacking trip I went on last week.  I'm pretty sure everyone on the trip knew I had cancer, and after a few days when I was away for awhile irrigating, if they didn't know the details of what the cancer left me with, and what I was doing, I'm sure they were filled in.  With the gaseous backpacking food diet, there were a few evenings where I was just ripping farts left and right, and nobody said anything to me about it.  Nobody wanted to say anything about it. 

Anyways ... it's just something that people are eventually going to find out me over time I guess, if they get to know me and start spending time with me.

We'll see what happens ...

Irrigating and Backpacking (Part II)

My second backpacking trip was a 6 day / 5 night trip in Sequoia National Park with a bunch of guys, several of whom I worked with during my days as an engineer with Motorola, and a few of which I did Kilimanjaro and a safari with in '07.  A few of them knew of my cancer (one of them was diagnosed with prostate cancer at practically the same time I did).

The game plan here was to definitely NOT be lazy and to be diligent in irrigating.  Every day.  I brought enough crapping supplies to outfit two or three other team members should they suddenly find themselves with an ostomy, and packed it all in a nice, transparent, gallon-plus sized waterproof bag I got at REI.  Kind of a mega-ziplock bag.  I even purchased some super heavy-duty waste bags marketed specifically for packing used ostomy supplies (http://www.bagitaway.com/) and brought along a trash compactor bag liner, which is made of pretty thick plastic, for storing the used ostomy supplies.  I was ready.

Again, things started out nice.  I irrigated the night before flying down to Fresno, which held me over until halfway through the first day.  I thought about irrigating at the campground we stayed at the night before hiking started, but this was a heavily used campground with lots of people, and even though they had a very nice pit toilet, I couldn't see myself camping out there for 30-40 minutes with people banging on the door, yelling at me to hurry up.  Anyways, the stoma pouch got quite full about an hour out from our first camp, so I told the guys I was gonna go run ahead and get to camp "to get some water," which was code for "I need to irrigate."

I ran ahead and set up shop.  The first irrigation session went pretty well, although it still took about an hour.  I had to filter out 2+ liters of water, dig a large cathole, heat 1.25 liters up to body temperature (which is difficult in the outdoors - I had only a small 2/3 liter pot, and had to fill it up and heat it up twice.  And, while I was heating up the 2nd pot, the heated water from the 1st pot, which was in the irrigation water bag, was cooling off.  This wasn't terrible as it was a hot day, but I couldn't help but think how difficult irrigating this would be if it had been in winter, or just a cold day), slap on the irrigation sleeve, let the water drain from the water bag, through the catheter and into your large intestine (all while holding the water bag over your head, which is tiring as it takes five minutes or so for the bag to drain), and then stand or sit above the cathole for 30-40 minutes while irrigation ran its course, then carefully remove the irrigation sleeve, clean up the stoma site, put a clean cap one, carefully put all the used supplies in one of the waste bags, and fill in the cat hole.  So, like I said, this took an hour.   But it went pretty smooth.  I did have a "late return," (you get output after you think you're all done) which was a drag, and I quickly took care of, but that was it.  Things looked up.

The next morning, I was glad I didn't have to irrigate.  I think if you're going to irrigate while backpacking with others, you want to do it when you get to camp in the afternoon or evening.  In the morning, it's colder and people generally want to break down camp, eat breakfast and go.  I didn't want to hold up the team for an hour in the morning takin' care of business.

Things were a little trickier the second day on the trail.  I got about 12 hours out of my irrigation before my stoma started outputting again.  I think it was the food and the altitude.  The typical backpacker's diet is a lot of dehydrated food that is just a change from what my normal diet.  Even before I got cancer, it would always give me tons of gas.  So, when I got to camp, I had a full pouch and needed to irrigate.

This time, things didn't go as smoothly.  The temperature was nice, and there was no rain, but there was wind.  I did figure out that I could get away with only boiling one pot of water by filling the water bag with 3/4 liter of cold water from the river first, and then mixing it with 1/2 liter of near-boiling water. to get the temperature I needed.  So that was cool.  But, I did a horrible job of adhering the irrigation sleeve to my abdomen.  The sticky part of the irrigation sleeve is like fly paper, and the wind blew the sleeve around a bit before I could apply it, which caused the sticky part to stick to itself, making a good seal impossible.  I didn't notice this until the irrigation begun and I noticed waste all over my shell pants.  Great.  I quickly swapped out irrigation sleeves to fix that problem, and then discovered that I couldn't stand up and irrigate as the wind blew the sleeve around, which resulted in poo flying all other the place.  More mess. Ugh.  Eventually, I got done with everything, but it took at least 90 minutes because I had to clean my clothes and had TWO late returns, even after waiting 30-40 minutes for irrigation to take its course (at home, it's 30 minutes ... tops).

So, I was pretty disappointed with things on the 2nd day.  While everyone else on the team was chilling out, having dinner and just chatting away, I was wrestling with stoma management.  And to tell you the truth, it sucks.  It's one thing when you're irrigating in your bathroom and reading a book or checking email in this very controlled environment, it's another when you're outdoors, trying to stay on top of everything, and knowing that everyone else on your team does NOT have to deal with this, and knowing that they you're not there hanging out with them because you're taking care of this gross activity because you had cancer.  It also sucks that you're carrying 3-4 pounds of ostomy supplies, stuff that nobody else is carrying, and that you're carrying out this big stinky bag of used ostomy materials, which, by the end of the trip, probably weighed 3-5 pounds.  The longest backpackers typically go before having to refill on food supplies is about two weeks.  Having to carry two weeks of used ostomy supplies would really suck.  Bet it'd keep the bears away, though.

Even though I had upgraded the waste disposal materials (ostomy waste bags placed inside a trash compactor bag), things still smelled a bit.  I think next time, I'm going to put in a little bit of cat litter or baking soda in each waste bag to help with smell and moisture.  Or, if its hot and sunny out, just let the used materials bake in the sun for an hour or two before packing them up -- that'd dry 'em up and get rid of a lot of the smell (and, make carrying the waste out easier by lightening the load).

My third irrigation went pretty smooth.  I had the boiling water thing down, dug a nice big cathole next to a rock that provided some wind shelter, and made sure I had a nice irrigation sleeve seal.  This allowed me to sit down on the ground, lean against the rock, and having the irrigation sleeve just fall from my abdomen to the cathole.  It was actually ... comfortable.  The only hassle was two late returns (again ... ) and a little bit of extra clean up.  But still, it was another hour out of the day.  And only on day three, I was growing weary of this.

The next day I didn't irrigate at all because I simply didn't want to.  I knew that the day after that we'd be hiking to Bearpaw, a high altitude mountain camp set in the park that had hot showers and a FLUSHING TOILET, and I think the timing would hold me over until we got to Bearpaw.  I didn't quite make it, as my backpacking diet still wasn't giving me my 30+ hours of respite from poo, but I made it to Bearpaw in one piece.

The flushing toilet was nice.  I finally had some sheltered, private space where I could do my irrigation properly.  Everything went fine until ... once again ... I had TWO late returns while cleaning up.  The second one was a vicious one.  It literally blew the stomach cap off my abdomen, something I've never had happen before, splattering poo over everything.  By the time I cleaned everything up, I was really gettting sick of stoma management on this trip.  But, thankfully, that was the last day.  The next day I was in a hotel and was able to start getting back to my routine.

So, all in all, I made it.  There's certainly some kinks I need to work out in my system if I want to  continue irrigating while backpacking.  All the time spent having to deal with this irrigating on a daily basis is the cost that having cancer continues to make me pay if I want to continue doing things I want to do.  But, you know what.  It's worth it.  I love being outdoors.  The outdoors is my church, and it is where I'm happiest.  It was just so wonderful to be out there on a real extended backpacking trip again - pushing yourself physically, hiking in mountains, taking in the views, swimming in alpine lakes, and sleeping under stars with no tent over your head.  Just wonderful.

I want to keep on trying to irrigate, but I can see myself going with the "bag" route.  Having to simply swap out bags takes so much less time (no water to boil, no waiting 30-40 minutes, no having to take care of late returns), and less supplies (no irrigation supplies), so it'd be a lighter solution.  But, I'd have to resign myself to wearing a bag, and I just plain hate walking around with a bag full of poop hanging off my abdomen.  So, I'm going to try my best to make irrigation work.

But, there are solutions to making a full-on bag work with backpacking.  I don't like most of the commercially available options, but I do like what one guy did.  Check out this "Backpacking with Stoma" blog post:

http://www.livingbiggerwithcolostomy.com/2012/03/ostomy-gear-for-backpacking.html

Scroll about half way down to see the custom stoma guard he built.  It goes under the hip belt and creates space between the stoma and a hip belt.  If I go with the bag, I may have to eventually try this.

Anyways, that's where I am with irrigating and backpacking.  I still want to give it a shot, and there's some things I can still do to make things easier and lighter, but the time to irrigate every day will not go away.  I couldn't help but think how I'd irrigate if I was on long climb (I spent 3 weeks on Denali once -- how would I do that again?  Irrigate in a tent?  There's no way I'd do it without eventually some sort of mess, and it'd stink up the tent.  I couldn't ask my tent mate to hang out outside while I irrigate.  And, I wouldn't want to be outside the tent myself, irrigating in the cold and wind.)  So, maybe I'd be forced to do the bag route.

Well, there you go, that's all I have on the topic of irrigation for now.


Irrigating and Backpacking (Part I)

Sorry I haven't posted in a bit.  Life's been ... well, life.  Ups, downs, and all that.  I could pick from any of a variety of the ups and downs to write about, but I'm going with irrigation.  Particularly, irrigating in the great outdoors while backpacking.  It's something I promised I'd write about after I went on a few backpacking trips.  And, since I just returned from my second backpacking trip in a month, here goes.

My first trip was in The Enchantments, a beautiful region of the Alpine Lakes Wilderness in Washington.  The trip was a relatively short one, just a three-day weekend (Sat-Mon), but long enough that I'd be forced to deal with my stoma.  I can usually count on a period of at least 30 hours after irrigating where I don't have to worry about any "output", and for this trip I'd be away from modern toilet conveniences for at least 60 hours.

The plan was to irrigate Friday night, which would get me to Sunday morning, and irrigate again then, which would get me back to the trailhead Monday afternoon.  Everything started out fine -- I started out wearing a stoma pouch, which creates no problem at all with the waist belt on my backpack.  I use a pretty lightweight backpack that has only a 1" or a 1 1/2" inch webbing as a hip belt.  Sometimes the hip belt rides above the stoma, sometimes right over it.  As long as the pouch stays empty, things are great, and life is pretty much just as it was before I got cancer, and I'm as happy as a clam.

But, I got lazy.  Sunday morning I didn't irrigate as planned.  I was eager to get hiking and didn't want to hold anyone up.  Plus, the skeeters were outrageous, and the prospect of baring my midsection for 30-40 minutes while irrigating was not very appealing. So, I swapped the pouch for a full-on bag and decided to hike that way.

I regret doing that.  Not only did I have to swap out bags when they became full (which meant stopping, digging out stoma supplies, digging a cathole, emptying the old bag in the cathole, putting on new bag on, and then cleaning up), this created extra waste.  I had to pack out all the used bags.  I did a horrible job with planning for waste removal as well.  I was out of "blue bags" at home, so I was putting the used stoma supplies directly in a thin kitchen garbage bag, which wasn't very sturdy, even when I double-bagged it.  The odor was too much, and whenever you pulled the garbage bag out of your pack, you could see what was in it.  It was kinda gross.

On Monday morning, we wanted to hike out as quick as possible, so again, I didn't irrigate.  And, again, this was a mistake.  I used stoma pouches all the way down, and they would fill quickly.  The stoma pouch adheres to the skin with less surface area than a wafer used with a bag, and discovered that the hip belt tended to "rub off" a full pouch, which, as you might guess, creates mess.

To top things off, I used up my toilet paper supply pretty quickly, and had to rely on supplies from other team members to clean things up every time I had to put on a new stoma pouch or bag on the last day.  Fortunately, these were all good friends who knew what I had been through and didn't mind helping me out at all.

Oh, and one more thing.  I had my stoma supplies in regular ol' zip lock bag.  This was no good as those bags are flimsy and easily get holes.  Stoma pouches and wafers used for adhering bags to the body are made out of a wax-like material that absorbs water, so you really want to keep these things dry.  The regular kitchen-grade zip locks don't do a good job of this.  I think I even had the freezer bags, which were a little thicker.  I needed to have my supplies in something much sturdier and waterproof.

So, in short, this first trip didn't go so well, stoma-wise.  (In every other aspect, it was great -- the Enchantments are beautiful.)  My plan to use only stoma caps was a good one in theory, but by failing to irrigate, the hip belt riding over the stoma doesn't work at all.  Whether it's stoma pouches or full-on bags, you're going to have problems if your stoma starts outputting.