Monthly Archives: March 2012

Mar
29
2012

Just Laugh

Filed under Ostomy by

Sometimes you just have to laugh. You know, when something goes wrong you need to step back and assess the situation and decide to be mad or not.  I find that when I do that, less things make me mad than ever and sometimes I find things pretty funny, at least to me.

It all started yesterday as I was preparing to irrigate for the day.  Irrigation is the way I go to the bathroom since my ostomy surgery.  I wrote about it previously.

I was prepping for the irrigation as I normally do.  I got my supplies out from the other room.  I set up my little garbage bag for paper towels and such and I grabbed the water vessel used to hold the water I irrigate with.  During all of this I had the water running to  get it up to “blood” temperature.

Once the water is a good temperature I start to fill the water bag. I do this in the sink because that’s what I’ve always done since I started. The thing is, this is a new water bag that I switched to.  The old one is fine, but I’m travelling back East soon and wanted to have a second one for travel in case something got lost or damaged.

This new bag is shaped much different than the old bag and doesn’t fit as well into the sink, making it difficult to fill up to the 1500cc mark.  I get the bag filled to the point where the water is about 1.5 inches below the mark.  So I try to re-position and fold the bag to get the opening under the faucet.  I get it just right and fill the bag.  I pull the bag out to see my progress and it’s still 1.5 inches or so below the mark.  I was a little confused but figured the water must have been much lower in the bag than I had thought.  So I do it again. Same thing.  A third time, same result again.  I was getting confused.

You’ve probably figured out what’s going on at this point.  I had yet to make the mental leap.  I think it’s important for a little more back story to help explain why.

One of the side effects of the chemo I was taking is peripheral neuropathy.  These effects can last up to two years or in some cases, never go away.  I have been slowly getting better, but I still have some issues with my feet and fingers.  For the most part I have adapted to the lack of feeling and don’t think much of it.

Unfortunately, having the ability to feel in my feet really would have helped my situation because as I was standing there pondering the physics of water filling a vessel, I was standing in a bigger and bigger pool of water.  It took me four tries of filling up the water bag before I realized the valve at the bottom was open and water was running down the tube onto the floor.  The bathroom floor was about three quarters covered in water and filling up rapidly.

In my panic, I turned off the faucet, but there was still a liter worth of water in the bag, making its way to the floor.  I finally closed the valve on the bag and assessed the situation.  Water all over the place.  Happily it was just water because what I’m normally dealing with when I irrigate is poop!  Two bath towels and a Sham-Wow later, the situation was under control and I could get back to irrigating.

I think that the whole event could have soured my day, but the image of me taxing my brain cells on why the bag wasn’t filling with water, all the while standing in an increasing pool of water makes me chuckle.  It was one of those times I just had to laugh.

Mar
27
2012

Toothaches and Cancer

Filed under Cancer by

Party under the bicuspid!

So I’ve been suffering a toothache for the past few weeks.  I went to the dentist two weeks ago and discovered I had an abscessed  tooth.  The plan was to do a root canal.  First we had to get the infection under control.  So the dentist drilled and cleaned the tooth.  The infection was so bad that when he drilled into the abscess it started to drain “like a geyser”!

He couldn’t finish the root canal at that point because by filling the hole he drilled he would close off the drain for the infection and it would cause a whole bunch of pain for me.  The solution was to pack it so it could still drain and put me on antibiotics to get the infection under control.

That was two weeks ago  So far I’ve been through two types of antibiotics and a lot of ibuprofin to keep the swelling down.  The infection is still not under control.  The reason, my cancer.

It was explained to me like this.  After my ostomy surgery I contracted a really bad e coli infection that landed me in the hospital for 5 days.  I was put on some massive liquid antibiotics for several weeks followed by some really potent oral antibiotics to finally kill the e coli.  Unfortunately when you do that the only bacteria that remain are those strong enough to resist the antibiotics.  Those resistant bacteria are now having a party under my bicuspid!

It turns a relatively routine root canal into something that may require an endodontist.  I’m on a new, more powerful antibiotic that should hopefully get the infection under control and I can finish this next week.

Still…  In the grand scheme of things this is small potatoes.  I need to sometimes remind myself of that.  At the end of the day it’s still just a toothache!

Mar
25
2012

Why I Relay

Filed under Cancer by

So some of you may know that I am participating in the American Cancer Society Relay for Life.  It’s an event they hold all over the place at different times.  The relay I am participating in is this May 19th and 20th.  It starts at 11am on Saturday and runs continuously until 8am on Sunday.

It seems obvious why I would be involved in this fund raising activity.  I am a cancer survivor and this is a fund raiser for cancer event.  That is true, but there is more to it than that.  For over a year now I have been the recipient of other people’s good will.  People have walked for me, ridden their bike for me, donated for me… it is amazing the amount of people who have selflessly given to me and other people like me.  I can’t express my gratitude enough for all these people have done, so I want to pay it forward, but that’s not all…

People who know me know that my family have been dealing with cancer for years.  It took my grandfather, it took my nephew.  It attacked my father-in-law and his sister, twice.  Then it came after me.  It has gone after friends.  It has gone after spouses, partners and friends of friends.    I relay for them, in remembrance and support, but that’s not all…

For every person who is afflicted with cancer, there are the caregivers that support them through their ordeal.  They are parents, children, spouses, partners, extended family, friends, etc.  Without them, our journey would be so much more difficult if not insurmountable.  They need our support as much as we need theirs.  I relay for them with gratitude, but that’s still not all…

The doctors, nurses, technicians, volunteers and all the support services they use to battle cancer and do their best to keep us around for more birthdays.  The number of medical professions that had a hand in my remission is huge!  I’m sorry to say I don’t remember the names, but I recall the kindness and caring though the many difficult times of my journey through cancer.  I relay for them because I want to do what I can to help them save as many people as they can.

I’m not really great asking for help.  For the most part I will try to take care of things myself.  This is one thing that is bigger than me and I need your help.  I humbly ask for your help.  The more we raise, the more we help people who have to travel this journey.  Help could come in the form of a donation or you could buy a luminaria to honor someone.

You could also help buy joining my team if you are in Las Vegas and come relay with us.  The idea is to have people on the field from 11am Saturday to 8am Sunday.  You wouldn’t have to be there the entire time, just the time you are scheduled to walk.  You can get more information about donating or joining from my relay page or my team page.

Thank you so much!

Mar
16
2012

Kevin

Filed under Cancer, Thoughts by

I’m having a hard time starting this post.  The fact is sometimes reality sucks and you don’t want to acknowledge it. To start with, this is not about me.  I want to tell you about my neighbor, Kevin.

Kevin is from Farmingdale, NY.  I know this because he came over to my house many years ago when he saw the West 43rd Street sign my brother “acquired” from Manhattan many, many years ago.  When I moved out west I “acquired” it from him.   He introduced himself and we got to talking.

He worked for the phone company for many years until he retired.  After retiring and moving out West, he continued to work as a handyman.  I remember his white van parked in his driveway across the street with the ladder attached to it ready for any job.

He was outside his house working on one thing or another.  We are both original owners of our houses so we’ve been neighbors for 15 years.  I remember when he painted his own house, twice.  No small feat being a two story house.  Every Christmas he went over the top with Christmas lights.  To put it mildly, retirement was not slowing this man down.  Very often as I was walking to my car to head out to work he would wave hello and we would end up chatting for a while.  He is an easy guy to talk to.  No matter what the subject he always seemed to have some life experience that related.

A few years ago we noticed that he wasn’t outside much any more.  It was unusual enough that Danielle and I commented about it.  Well, it turned out he had gotten cancer.  He was sick for a long time but he eventually beat it.

It was about the time I had gotten cancer and after my surgery that I saw him again.  He was out working on the yard with his grandchildren.  I was out walking as I was required for my recovery.  I know I must have looked like hell.  He waved hi like he always did and we started chatting across the road.  I made my way over and we started to swap cancer stories.

We both had some pretty major surgeries with complications.  His were worse than mine.  I was heading into chemo while he had finished and was declared cancer free.  You could see that the cancer and treatment had done a toll on Kevin, but he was upbeat and determined to do some of the things he did before.  He gave me some advice about chemo and tests that helped me keep a positive outlook on my future.

I didn’t see him much after that day.  I was still recovering from my surgery and chemo.  When I did, we would wave and go about our business.  I haven’t seen him in months now.

Danielle just found out his cancer has come back.  Talking with his wife she discovered that it had come back pretty quickly and his treatment has not been as effective as they had hoped.

So I find myself at a loss.  This blog has always been about me and my journey through cancer, but today I want you to know about Kevin.  Is there possibly a lesson in all of this for me?  Possibly, but today I just don’t care.  Today all I want is for my friend to be well.

Mar
08
2012

The Kit

Filed under Ostomy by

I carry a bag with me wherever I go these days.  I need it because if I need to do maintenance on my ostomy pouch there are some things that I like to have with me.  Also, if I have an issue like a leak or something, I need supplies to fix the problem!

Travel Kit

Luckily, since I’ve started irrigation I haven’t had any issues or have needed to maintain the pouch out of the house.  It has been a real blessing!

Regardless of that fact, I still carry around my essentials kit because I don’t think I’ll ever feel secure without it.  Call it my security blanket if you will.  It has gone everywhere I go since June of last year when I finally started going back to work.  These days I have enough confidence to leave it in the car if we go out to eat or something but not much else.  I also don’t think I’ll leave it in the car once the summer kicks in here in the desert.

Two Bags

So what do I carry everywhere I go?  This is my kit, so I wouldn’t presume to guess what other people who have had similar surgery would have, but I suspect it would be along the same lines as this.

First are two pouches.  The one on the left is a one time use and the one on the right is reusable.  Since I started irrigating, I use the one time use bags since for the most part they stay empty.  Before that I used the reusable bags that had to be emptied a few times a day.  Not much fun at all.  My insurance only paid for 20 reusable bags per month so I had to use the reusable bags for a few days at a time.  The one time use bags I get 60 per month.  Ironically since I started irrigation I use far fewer one time use bags per month than reusable bags.  The reason I have one of each in my kit is in case my colon decides to go crazy I can put on the reusable bag and not worry about having to change bags multiple times while I’m out.  It hasn’t happened yet, but I like to be prepared.

The Wafer

Next is the wafer.  Each wafer is packed into a sealed bag.  My pouch system is a two piece system meaning the wafer and pouch are separate.  It’s a little bulkier to wear on your body but a must if you use one time use pouches.  It is also extremely helpful if you irrigate like I do.  The wafer is the part of the system that is attached to your body.  It is the adhesive that attaches the pouch to your body and protects your skin from effluents.  See my post, The Appliance, to see how it works.  If I get a leak on the road, this is what I’ll be replacing.  There is no fixing a leaky wafer as far as I know.  Just pull it off, clean up and install a new one.

Everything Else

The rest is support for those two big items.  The square cards with the circles on the right is for measuring my stoma for the wafer.  You mark the wafer with the Sharpie and cut it with the scissors.  On the bottom right is an adhesive cover from a previous wafer with the stoma already cut into it.  Since the stoma doesn’t change much over time I can use the old wafer cover to mark the new wafer for cutting.  It’s much faster than measuring every time.  I bring the cards just in case.  The bottom left is a pile of garbage bags to throw away old bags, wafers, towels, etc.  I try to find outside dumpsters to get rid of the bags.  No reason to let my unpleasantness linger after I’m done.

The small square next to the garbage bags contains a skin barrier solution to protect my skin from the adhesive from the wafer.  Above that is a tube of Adapt paste that helps seal the wafer to your skin to prevent leaks.  Above that is a small mirror to help you see what your doing when you install the wafer.  The hole you cut in the wafer should fit exactly over your stoma and it’s difficult to line it up by viewing it from above.  The mirror helps a lot.  Next to the skin barrier is a small pouch filled with deodorant to use in the pouch itself.  I only use that if I am using the reusable bag.  I don’t need it for the one time use pouch.

Finally at the top is a tube of powder that you use to treat any cuts you may develop.  I’ve found that I had a problem with cuts when I was using reusable, one piece pouches and still learning how to cut the wafers.  If you do it wrong there is a chance your skin will be exposed to waste for an extended period of time which is really bad for the skin.  The problem is if you get a cut under the wafer there really is no good way to treat it because you need to put a new wafer on top of the injury.  The powder helps keep the injury dry which helps it heal.  I have not had a problem with cuts since I started irrigation.

All Packed Away

That’s about it.  Everything fits very neatly in a little bag that I throw into my shoulder bag I use for work.  Like I said, I haven’t had to use it since October, but it’s nice to know I have it handy wherever I go.  Sometimes it’s a pain to always have to have to carry it around, but for the most part I pretty much forget I have it until I need it.