May
06
2013

Ostomy Uncovered

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Every once in a while somebody will get the courage up to ask me questions about my colostomy bag.  It seems like quite the taboo subject and to be honest, if I didn’t have one I think I would feel awkward talking about it.  Funny thing is now that I have one I am more than happy to discuss it.

The reason I like to talk about it is because I’ve discovered that living with it is really no big deal.

I’ve had it for two years now and am able to do everything I did before having one.  I’ll admit I haven’t actually had the courage to go swimming with it but there is nothing physically that is stopping me.

Colostomy Uncovered

One thing that I have been asked by a few people is where is it located.  I describe it as ‘on my left side, even with my belly button’.  It’s different for everybody depending on the type of ostomy and how much of their colon needed to be taken out.

Since a picture is worth a thousand words (or in this case, nine) I’ve taken one to show more clearly where it is.

That’s it.  Not a whole lot going on there.  It is easily concealed under my clothes and once I irrigate, I don’t think about it all day.

I was really scared when I was told I needed to get one because I was completely ignorant about what it was.  In the end, the not knowing was worse than reality!

-Michael

Apr
19
2013

Looking Back

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I was going through some old notes on facebook yesterday.  I first started blogging about my illness there to let people know what was going on and how I was doing.  At the time I hadn’t decided to continue on to write this blog I now have.

I was drawn in because I remember writing the words and remember the feelings I was having as I was writing them.  Since my recovery, I’ve lost that feeling that I had back then.  In a way, having the bag helps me remember how sick I was and makes me want to be healthier.  Reading these early posts remind me of what I was facing and how hard the future looked.

Reading the posts reminds me how lucky I am now being cancer free and how every day is a gift.  It’s easy to lose that in the daily grind of living.  Writing those posts was a way to keep friends and family informed of my illness, now reading them is a great lesson for me.

I’ve posted those early post on to this blog in the correct time frame to make this a more complete blog.  Missing is the huge outpouring of positive comments from all of you that made me feel like I was never alone in this battle.  Reading the comments made me realize how lucky I am and how wonderful you are.

Here are the posts now added to the beginning of this blog.  For me it is the beginning of my journey.  It was the beginning of me having the opportunity to see how much love and support you selflessly gave me.

As these early posts said, “Thank you and I love you all”

9/23/2010 – A Note About My Cancer
10/26/2010 – How Am I Doing
2/8/2011 – Where We’re At With the Cancer
2/9/2011 – News From New York City
2/27/2011 – The Next Big Step In Being Cancer Free
3/4/2011 – Thank You All  –  Right before my surgery
3/11/2011 – Update
4/5/2011 – Post Surgery, One Month

Michael

 

Apr
10
2013

Insomnia

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I’m having a hard time sleeping tonight. I’m happy to say that it has nothing to do with cancer. It’s just a normal night at the end of a not normal schedule.

Things on my mind have to do with the work week ahead. Things that need to get done and people I need to meet with.

Normal life has taken over cancer life which is a great thing. For that I don’t mind a little insomnia.

Mar
24
2013

Two Years With the Ostomy

Filed under Cancer, Ostomy, Thoughts by

I was changing my colostomy bag yesterday and it occurred to me how routine it has all become.

It’s hard to believe I had my ostomy surgery back in March of 2011.  It doesn’t seem that long ago.  Here we are in 2013 and things have really been ‘normal’.

I’ve been living this way for two years now and things feel pretty regular.  I’ve really become comfortable living with a colostomy bag with all its ins and outs.  It has certainly not been the dreadful thing I thought it would be.  I sometime dread having to take the hour and a half in the morning to irrigate but for the most part it’s no big deal.

The thing is, my thoughts about what it would be were so much worse than what it is.  A lot of things in life are like that and we see people go through things that we can’t imagine ourselves going through.  I think in the end we all manage whatever life throws at us.  I’ve certainly seen that from the people I know and it inspires me.

I feel like I’m over the hump of this illness with hopefully few bumps as I head down this hill on my Big Wheel.  I watch in awe as others climb whatever hill was thrown in front of them and cheer them on.

My brother is stykin' on the bBig Wheel. I'm riding the trike!

My brother is stylin’ on the Big Wheel. I’m riding the trike!

Mar
17
2013

American Idol and the Ostomy

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February and March were busy months for me at work.  It was busy for everybody because American Idol had come to our theatre to shoot six episodes this season.  They were shooting in between our normal show schedule which meant that we would do ten shows in a week and then load in American Idol overnight for our weekend.  They would start rehearsing at 8am and start shooting at either 5 or 6 pm depending on if the show was broadcast live or not.

My job was House Electrician.  I had to make sure everybody had the power they needed for the show as well as manage the lighting crew for the Load in/out and for the TV shoot.  Luckily I had help from my assistant and leads. Everything went incredibly well.

My concern going into this was my ostomy.  My schedule was one that I had not done since my surgery.  My day would start at 3pm on Monday where I went into work and ran our normal show with the crew.  At 11:30pm, after our show, I would send my crew home to be back by 7 or 8 am to start rehearsals.  I would stay and have dinner from 11:30 to midnight along with my new load in crew that consisted of people from the Carpentry, Props and Wardrobe departments that stayed to do the overnight shift because they would not be needed for the shoot.

I also brought in a few fresh people at 11:30 including my assistant and a lead.  We then worked through the night loading in the show, taking a break around 4:30 am for lunch.  The whole thing was mostly loaded in and ready to go by around 8am.

At 7 or 8 my show crew that left 7 hours ago were back and clocking in ready to work.  After a quick meeting they usually went to their follow spots to start the long day of rehearsals.  By 8 am I sent my overnight crew home to be back at 7 pm the next day to load it all out.

At 9 am once everything was settled in I handed off my duties to my assistant to go get some sleep.  I was back within 5 to 6 hours.  I was there before the actual shooting of the episode in case anything came up.  I sent my assistant home for the evening.  My show crew was done when they were done taping.  It usually ran long.  I would get out a little later than everybody else to make sure everything was shut down.

Day two started later.  My assistant did the morning shift at 7 or 8 am with the show crew.  I came in at 2 pm and I would let him go around 5 or 6.  The load out crew was called at 7 or 7:30 depending on the day.  We would load out after the taping (or live) episode wrapped.  It could take us to 11pm or later.  I then headed home to get some sleep and be in for our normal show at around noon as I worked days on Thursday and Friday.

That is not an entirely unique schedule when you work in this industry.  It is unusual for us in a long running show.  I had not done it since I had my ostomy surgery and I was concerned going into it that I would have lots of problems.

Irrigation works really well when you’re on a schedule.  My normal schedule is to get up relatively early in the morning, have a small bite to eat and then irrigate.  After that I start my day.  On this schedule I was not going to bed until 9 or so the following morning.  Should I irrigate before I sleep or after.  Also because I was up all night, and eating, my digestive system was getting input where normally there would be an 8 hour break from me stuffing my pie hole.  I also didn’t put the best foods in my stomach during the overnight.  Craft Services had some good choices and some bad choices.  I made a lot of bad choices at first.

One of the things I had going for me was that the Hotel put some of the Department Heads up in rooms since we were going to be there very long hours.  That saved me from an hour of travel time and gave me a private place to deal with my ostomy if things had gone horribly wrong.

Now that American Idol has moved on, there are some lessons I’ve taken from the month long experience.

First, getting off your schedule does effect how well irrigation works, a lot.  I found myself several times having to change the bag at the theatre because they were just getting clogged up.  That rarely happens when I’m on a schedule.

Also, crap in = crap out.  Seems like a no brainer, but it became really apparent to me after that first weekend that I was having a lot more problems because of the food I was eating.  It also took a long time for those problems to clear up after I started to eat better.  One day of making bad choices turned into 3 days of dealing with the aftermath.

Sleep first, irrigate later.  Even though I would have been closer to my normal schedule if I irrigated before I slept, I found that even those few hours of sleep and not eating produced a better result than the other way around.  I don’t have a good reason for this, it just seemed to work this way.

The last thing I learned is that I can still do this even with the ostomy.  It seems like something I should have known from the start, but it has been a big change and doing new things with it is always a little daunting.  There is definitely a bit more planning involved than before.  You lose more sleep because you need to dedicate time to irrigating (which I suppose is optional) and you need to make better choices, but being able to still do what I did before cancer always feels great!  Now I need to find a stategy that will keep me away from the Craft Services table!

 

‘You’re in it to win it dawg!’

Mar
07
2013

Guest Post.

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Not long ago I received a comment from Cameron Von  St. James.  He is a caregiver for his wife Heather.  He asked if he could write an article for my blog.  It was during the time I was waiting to hear back about my scan so I asked to delay it for a few weeks.  Now a few weeks later, here is Cameron’s article:

From Cancer Caregiver to Commencement Speaker

On November 21, 2005, my wife, Heather, was diagnosed with malignant pleural mesothelioma. Immediately, I became an unprepared but determined caregiver because I knew that I had to be there for my wife and newborn daughter. Our first and only daughter had been born just over three months prior to the diagnosis. Instead of happily celebrating my daughter’s first holiday as planned, our lives spiraled into chaos as we began a long, difficult battle with cancer.

We began to learn more about mesothelioma right when we received the diagnosis. Our doctor gave us our treatment options, which consisted of a local university hospital or a regional hospital, neither of which had a developed treatment program for mesothelioma, or Boston specialist by the name of David Sugarbaker. We chose the Boston specialist. I knew that if my wife were going to have any chance of beating this awful disease, she would need the best care possible.

Over the next few months, we had to learn a whole new approach to living our lives. Before the diagnosis, we both worked full-time, and had our comfortable routines. After the diagnosis, everything became chaos. Heather couldn’t work, and I could only work part-time in order to be there for her and Lily. During my time off, I arranged travel to Boston, took care of my daughter Lily, and took my wife to her doctor’s appointments. I was overwhelmed with my responsibilities.

As hard as I tried to stay positive, I often worried about losing my wife to this cancer. Fighting this disease, I sometimes thought I would end up a broke and homeless widowed single father, and it terrified me. Some days, the thought of these undesirable events drove me to the kitchen floor in tears. I just wanted the whole experience to stop because I felt helpless, but I knew I had to remain strong for Heather. She needed me to be her rock, and the last thing she needed was to see how scared I truly was.

Help came for us when we needed it most. Heather and I were thankful for the comforting words and even financial assistance we received from family, friends, and complete strangers. Being a caregiver is difficult without help. It is stressful, and you can’t walk away from the job even if you experience fear or anger. My strongest advice to anyone else currently going through a situation like this is to accept every offer of help, whether it is big or small. I had to learn the hard way to let go of my pride and accept assistance, but take it from me, there is no room for pride in a battle with cancer.

Though it took years for our lives to return to normal after mesothelioma surgery, chemotherapy, and radiation, it was worth the fight. Heather beat the odds, and she is cancer-free today, over seven years since her diagnosis.

Now, I know time is precious. I went back to school while working full time, two years after Heather’s diagnosis. My time as a caregiver taught me to cope with stress and time management skills. Even more importantly, it taught me the strength that I have inside myself and gave me the courage to pursue this dream. I graduated with high honors and was chosen to be the graduation speaker of the class. I spoke of my wife’s experience in my speech and about hope. I told my fellow graduates that, just a few years before, sitting in a doctor’s office and receiving the news that my wife had an extremely deadly cancer, I never imagined that I would ever be standing up on that stage. I told them what my wife had taught me, that within each of us is the strength to accomplish incredible, even impossible things. Lily and her mother were in the audience to cheer me on, and that was the greatest reward of all.

Feb
16
2013

Still Cancer Free

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After a few delays I finally got to see the oncologist today.  He was upbeat and happy to see me.  He told me everything looked great.

It was a huge relief for me.  You would think that after a year plus, it would be easier.  It is a little, but not too much.  I was second guessing things as I got closer to the appointment.  I think it will get easier.  I’m not sure only because it is all about the testing.  I feel great up until I have to go in for scans.  Then all the worry comes back…  but not right now!!!  I have another 4 months before I have to get tested again and I will tuck that anxiety away until then.

Today I celebrated with Danielle with Blueberry Hill for lunch and Pho Kim Long for late night dinner.  Tomorrow, a bike ride and back to living “normal” again!

Feb
14
2013

Results Day

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I am awake!  That is unusual for me. As Danielle with tell you, I’m usually out within five minutes of my head hitting the pillow.  It is even more unusual tonight because I’ve only had 4 hours of sleep from the prvious night because of work. 

But here I am, awake with thoughts bouncing around in my head.  I see the Oncololyst tomorrow to give me the results of my scans.  I’m anxious about it.  I haven’t had time to think about it until now.

I don’t like it.  This feeling that I have.  It’s a feeling like I’ve done something wrong and I am just waiting to get caught.  It’s that feeling of getting on a bath scale knowing you haven’t been eating well and have gained weight but on a much greater scale.  People avoid the bath scale, I don’t have that option.

It will all be done with tomorrow.  I’m hoping for the best…

Feb
06
2013

Scan Day!

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This is a fairly typical day for me when I have CT scans taken for the following week.  It is usually done along with blood work.  The trick is to do the blood work first so that the iodine doesn’t screw up my blood tests.  The iodine put the kidneys in distress as they try to filter out the iodine.

Steinberg Diagnostic

Yesterday:  I picked up the barium I needed for the CT scan.  Pretty easy and fast to get done, but because I have a colostomy, it is a little different than the normal CT scan.  It mostly means I only need one bottle of barium instead of two.  If the receptionist knows this then it’s pretty quick.  If not, then I usually have an argument and they have to call back to the CT tech to confirm what I’ve told them.

Today 9:00am  I woke up.  I slept in a little late today.  I took my time to get up because my day is pretty much revolved around this scan.

9:15am A light breakfast and medicine.  I have to stop eating or drinking anything by 9:45.  It’s not too bad because once the scan is done I can eat again.  Not eating is easy, I sometimes forget not to drink.  Not this time around though.

9:45am  Irrigation.  So far this is a fairly normal morning for me.  It will take at least an hour to irrigate.  I settle in and do some reading.  There is no reason that I know of not to do the procedure.  If anything I’m guessing it would make my insides easier to see.

11:00am  Start filling out the paperwork I got yesterday from Steinberg Diagnostic needed for the scan.  I seem to get this paperwork at the start of every year.  It was the usual insurance forms to fill out.  I know I’ll have more when I get there.

11:20am  Finish irrigating and change the colostomy bag and wafer.  I always change all the ostomy parts before I go in for one of these tests.  I want things to be as clean as possible.

11:35am  Clean up and get ready to go.

12:15pm  Drink 450ml of barium in 15 minutes.  Only one bottle so I drink it when a normal person would be drinking the second bottle.  It is interesting because I’ve done it earlier on other CT scans.  Again it depends on who the receptionist is when I pick up the barium.  They are not consistent if things are just a little different than normal.

12:30pm  Leave for Steinberg Diagnostic.

12:45pm  Sign in at Steinberg.  I have a seat and wait for me to be called up.  I know that when I get called up they will just move me to the next waiting room connected to the one I’m sitting in.

1:00pm  Now that they know I’m here, they move me to the second waiting room where you present ID and pay the bill.  There is also more paperwork that includes more insurance forms and access forms.

1:03pm  Move to another part of the waiting room.  The bill is paid and I wait for a tech to bring me to the back waiting room to get changed and scanned.

1:15pm I get picked up and moved to another waiting room.  I get changed into gowns and fill out more paperwork.  The CT scanner is in the next room.  There is only one other person in the waiting room with me.  It’s always an odd thing.  There always seems to be other people in the waiting room, but I seem to usually bypass them.

1:28pm  I get called into the next room where I lay down on the sliding tray.  I’m loaded on the bed to go into the machine feet first.  Once I’m loaded and the iodine line is tapped to my left arm, the techs leave, the machine starts up and the machine pulls me all the way in to the machine up to my head.

The first set of scans is without iodine.  Once that is done, the machine injects the iodine which gives you a warm feeling all over your body and makes you feel like you are urinating on yourself.  The first time it freaked me out, now, not so much.

The ‘machine’

I didn’t get a time when we were done, but once the scans are done, the techs come out, pull the iodine line and I get up to go back to the waiting room to get changed and go home.

That’s it, not very dramatic.  Hopefully I won’t need to do it again for another 4 months.

Feb
06
2013

High Anxiety!

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Like I said, it’s that time again!  The last post I talked about the time was coming up for the scans and blood work.  Well, I had my blood work today and my CT scan is tomorrow.

Time again for the barium, the iodine, the laying down with my arms up in the air, not moving, listening to the mechanical voice, “Take a breath, Hold it….   Breath normally”

Time to go into the testing facility, get scanned and leave with no answers.  I’ll have to wait a week before I know the results.  It is always the hardest week to get through.

It’s that time when all the doubt creeps back into my brain.  I don’t really have a lot to say about it that I haven’t said in past posts.  I think it gets easier as time goes on.  I’m certainly not as anxious as I was at three months, or six.  I think though I’m still at the same level as I was at nine months.

I’ve been reading other cancer blogs lately.  I don’t think it is necessarily the best idea because you never know what you will come across when you randomly search for blogs about cancer.  Some are positive, many are not.  Often I’ll come across survival rates that just depress the crap out of me.  Not necessarily because they have bad news for me, but because they exist at all on the internet.

Who goes to see what their life expectancy might be?  The first time I came across one of those charts I vowed never to seek them out again.  My plan was to live.  I didn’t need to see the statistics of how many died.  All it does is squash hope.  I think it is one of those things put up by people who haven’t been through cancer and see it as useful information.  The problem is those charts don’t know me.  They don’t know my particular situation.  Things like that should be discussed with your oncologist and not looked up by you alone, taking your best guess at reading the chart correctly.

I bring it up because it adds to my anxiety level.  It is something you can’t un-see and even though I have  a great long term outlook according to my doctor, I still saw the stats all those years ago when I was first diagnosed with cancer.

It only comes up during these check ups.  The rest of the four months, I’m great!  Two weeks of high anxiety, three and a half months of feeling and being normal.  In another 8 months that should lengthen to every six months.  I can’t wait!