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Patience

I don’t have much patience when waiting at the doctor’s office. My appointment is at a certain time, I expect to see the doctor within reasonable window after that appointed time.

Today I’m waiting to see the doc and it’s an hour past my appointment. To be honest I’m kind of fuming about it. Why am I expected to wait so long? Don’t they have any respect for my time??

But then I take a step back and try to reflect on what’s going on behind the scenes. My doctor is awesome and she takes the time to talk to her patients, including me. I think about what she deals with back there. Sometimes she has good news to share with her patients, sometimes bad. I think about the information she needs to explain to her patients.

So I take a breath. People all around me may be in different stages of their cancer journey. I’m on the back end, healthy and coming in to schedule a colonoscopy. I can wait.

Now that I’m healthy, I’ve gotten caught up in some old habits. Losing sight of the bigger picture in these instances is one of them.  I’m trying to keep hold of my perspective.  Sometimes it’s hard.

Posted in Cancer | 2 Responses

The Week

Not the machine I was in.

Not the machine I was in.

It’s that time of year again.  Time for the CT Scan and the blood work.  Time for the barium and the iodine.

None of that is really all that bad.  It’s the week between the tests and the results that still gets me anxious.  There’s something about the fact that there is paperwork somewhere in the health system that has facts about me that I need to know NOW!

My anxiety isn’t anything like it used to be.  I remember back when I had my first checkup after I was declared cancer free.  I was a wreck for weeks.  Now I’m just a wreck privately for a few days.

It all starts with the actual scan now.  I step into the room with the friendly techs who ask me some standard questions:

Are you diabetic?  No.
When did you drink the Barium?  8:45
Are you allergic to iodine?  No.
Why are you here?  Cancer followup.

Then I lay down on the table with my feet towards the machine as the second tech taps my arm for the iodine push.  We’re all very chatty and the mood is light.  I explain it’s not my first rodeo and notice they have a new CT Scan machine and how I prefer CT to PET scans.  Once they are set, they tell me to put my hands over my head and listen to the female voice for breathing instructions and start up the machine.  I do one set of passes and then they come out to push the iodine for contrast and do a second set of passes.  This time, my hands are in the air.

The second pass is done and the first tech comes out to chat while the second checks to make sure the scans are clear.  Once She gives the “ok” they start to get me out of the machine.  This is the moment the anxiety starts to creep in.

Right at that moment I start eyeing the technicians.  I’m looking for their “tell”.  Did they see something?  Are they being extra polite to me because they can see on the scans that I’m doomed?!!  I used to try to be sly and ask open ended questions looking for information.  “Everything look good?”  I’d say it in that nonchalant tone of just trying to make idle chat.  As if to say, “I’m really interested in your work… and not because you just took pictures of my insides…”  They obviously never buy it, “Result will be ready by Friday and sent to your doctor.  Make sure you drink lots of water to flush out the iodine.”  I’m sure they get hit up for information all the time.

So now back to the changing room to get changed and go on with my day.  Now that the picture has been taken I start to analyze my last few weeks.  “Anything weird???” I think.   “Well, I’ve had some headaches lately.”  And it has started.

Like I said, not as bad as it used to be, but it lingers….

 

-M

Posted in Cancer, Humor | 3 Responses

The CDC and Ostomies

I’ve tried writing this post a few times now.  The CDC has put out new anti-smoking ads.  These ads have always been kind of in your face and shocking.  The most recent tie together the increased risk of colon cancer and smoking.  There’s this one:

and this one:

Many people with ostomies were offended by these commercials.  The United Ostomy Association of America even wrote a letter to the CDC asking them to remove the ads.  The argument is that portraying ostomy bags in such a negative light increases the negative stigma that would cause people needing the life save surgery to delay having it or refuse having it altogether.  The CDC changed the one that was most offensive to people with ostomies.  This is the new version:

I’m torn.  I was really offended at first.  The original version of this ad basically said that getting an ostomy was the worst possible thing that could happen to you.  Julia basically said that it leaked and smelled and she was stuck in the house for the year she had to wear one.

Having a colostomy bag for 4 years now I wanted to shout at the monitor and say that’s just not true.  I later felt bad for Julia because if that was her experience then her health care provider really failed her post surgery care.  They could have addressed those issues and not made her feel trapped in her home.

 

Ostomy -v- Normal / Ostomy -v- Death / Ostomy -v- Pain

Given a choice, nobody is going to choose an ostomy over being normal.  At some point though you may be faced with a choice of an ostomy or severe pain, incontinence, or death.  It’s unfortunate that there is such a negative stigma that it may cause people to endure pain or even prefer death to it.

I’m going to be honest.  When I was diagnosed with cancer, I thought getting a colostomy bag was the worst possible outcome.  That was really early in the process.  That was before the massive pain I had to endure before surgery.  That was before the actual realization that death was a possibility.

I’ll also say that getting one is life changing and that having one was difficult for me at first.  I had problems with having the bag adhere to my skin.  I was afraid of being too rough with cleaning the stoma because, you know, it’s my colon sticking out of me.  In the end, medical supply companies were very generous and sent out many samples of different products until I found one that works and my stoma nurse ensured me that my stoma is pretty damn tough.

Four years later, I’m more active than I was before the surgery.  I’ve had to change how I do things obviously, but I have not been hindered at all.  At the end of the day, I don’t mind much pooping in a bag.  I’ve also managed to keep my sense of humor, thanks for the tip Julia and Mark!  :)

 

At least smile when you show your poop bag!

At least smile when you show your poop bag!

Posted in Cancer, Ostomy | Leave a comment

Slow Down! Embrace the Journey.

It’s 38 degrees outside today and the wind is blustering.  It’s not the weather you expect in the Las Vegas desert, but if you live here it’s not surprising.  I’m wearing a leather jacket, wool hat, and gloves.  I’m walking to the grocery store to pick up some supplies for New Year’s Eve.

The store is a little over a mile away and I could easily drive there in five minutes, but here I am, face into the cold wind enjoying my walk.

For a few years now, I’ve been riding my bike.  For the most part, I’m a fair weather rider.  When the temperatures start hitting the forties, the bike tends to stay in the garage.  When it’s warmer out, I ride my bike to the grocery store to do my shopping.  Even with the commuter bike, it’s still a little bit of a project to get going.  Because of that, I tended to not ride to the store as often as I could have.  I was feeling guilty about not riding so I started walking instead.

I’ve been walking around the neighborhood a lot recently and I feel like I’m discovering it all new.  I’ve lived here for 17 years and I’ve never really took my time to explore the place.  For example I thought most of the area had paved sidewalks.  That is entirely not the case as I discovered walking to the park the other week.  I’m on a major surface street with 2 lanes of traffic in each direction, and no sidewalks or street lights.  It’s something I never noticed zipping by the same area thousands of times at 45 miles per hour.  I didn’t even notice it riding my bike hundreds of times at 20 miles per hour.

Walking slows me down, and that’s a good thing.  For that hour it takes me to walk to and from the grocery store, there’s nothing to distract me from the task at hand.  My brain disengages from multitasking.  For me it becomes very serene and relaxing, even on a cold winter day.  So much so that I’m starting to make excuses to go to the store.

For most of my life I always kept my eye on the goal.  While never losing sight of your goal is a good thing, having tunnel vision to your goal may not.  You may just miss some amazing people and events during the journey.

So what does it all mean?  For me, time has been flying by.  It seems like only yesterday we started 2014 and now here we are at the cusp of 2015.  Before you know it, we’ll be half way through the year.  If walking to the store slows down my day and lets me decompress for a short time, I don’t see the down side.  I can enjoy what I have and what I’m experiencing without distraction.  We are constantly bombarded with outside stimulation, it’s nice to shut it all off sometimes and only let in a what you are in control of.

I know none of what I’ve written is new or Earth shattering, but sometimes it takes a 3 mile walk in cold wind to have a light-bulb moment.

Posted in Cancer, Thoughts | 5 Responses

Begin Again

Life is about beginnings and endings. My life as a married person has come to an end and my time as a single person has begun again.

I was not expecting this ending or beginning again in my life, but sometimes a curve-ball comes your way and you have to take your swing. It is not important to share the details of the breakup here. All that it comes down to is the fact that I’m alone again. This last month has been a hard time for me, but I’m managing. I have family and friends to thank for being good, sympathetic listeners when I needed it, coaches when I stumbled and cheerleaders when I needed uplifting. I know they will continue to be there as I move forward with this new chapter in my life.

I’m using the lessons learned from being sick to move forward now. I’m taking one day at a time and concentrating on the things I have control over. I’m breaking down tasks into smaller bits and being satisfied with my progress no matter how slow it’s going. I also make myself okay with the things that have not changed, nor will change in the near future. Making plans to change things are good enough now. As long as I’m moving forward, I’m still moving.

It’s too soon to think about my future with somebody, or not. Of course I have. It’s hard to think about being single, 46 and “broken”. I say broken because of my colostomy. I know I’m not really broken, but I’m not normal either. If I do meet somebody, how does something like that come up? How do I tactfully bring it up in conversation? Do I do it early before I’m too emotionally invested that it won’t hurt if I am rejected because of it, or do I wait until I’m really comfortable with somebody to have a frank discussion about it?

These are questions that are too soon to think about, but I am. How could I not?

For now, though, I am embracing being single again. There are so many things I want to do with the house and try creatively. I’ve started making rings out of coins. I didn’t know how easily it could be done with basic tools. All that is needed is patience and time. Right now I have an abundance of both. There are other projects I want to concentrate on when I have enough money to get the tools needed to make them. I’ve been very interested in building my own weight driven mechanical clock. Making the gears out of wood and designing my own clockworks seems really fascinating to me.

Of course I have my bike and plan to ride it often. I need to get back in shape as I have let myself go. A combination of stress and bad decisions need to be turned around. Hopefully I can do that and make the life long changes I need to make to continue to be healthful. I’ve started with small changes. I’ve stopped drinking soda on a regular basis. I don’t miss it at all, except sometimes. I’m managing. Small steps.

Right now I’m in the middle of a purge. Danielle moved out and now I’m getting rid of so many things that have been weighing me down. When I’m done the house will be simple, clean, and uncluttered. Hopefully my life will reflect those attributes as well.

It’s been a hard month, but now I’m making changes; and that’s a good thing.

Posted in Thoughts | Tagged , | 7 Responses

Travel

There’s no place like home. When you irrigate like I do you have everything set up just the way you like it. It’s taken time to find out what works and what doesn’t work when it comes to the logistics of irrigation and you can make changes to accommodate your needs.

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On the road, things are a little different. You never really know what you’re getting into when traveling because at the end if the day you have some special needs.

That doesn’t mean that things have to be miserable when you’re traveling. Over time you learn what works when you don’t know what to expect from your bathroom.

First things first. Make sure you pack what you need. You figure this out over time. The first time I had to travel with the ostomy, I was so nervous about not having access to my supplies I took nearly two months of stuff for a two week trip. Half of my carry on luggage was filed with supplies. Now I take more than I need but less than my entire cache of supplies. It also helps if you try not to deviate too much from your normal eating habits. Eating too far out of your norm will cause you to go through supplies faster.

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Make sure you’ve figured out how to do what you need to do without any special accommodations. At home we have a detachable shower head that makes keeping the irrigation sleeve clean easy. I have yet to come across a shower in a hotel that has a detachable head. I figured out how to keep the sleeve relatively clean without it. I also have to change my shower routine because of that.

Being out on the road also means you need better time management. At home my routine is very casual. I have a lot more time. On vacation there is usually a plan to go out exploring. Because of that I need to plan my schedule and plan how long I think I need to irrigate.
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The other issue is placement. It helps when things are placed together. Sink near the toilet near the shower. One place had the sink in another room, another, like this have the sink and toilet together, but the shower is a little far.

At the end of the day I had a really good vacation with regard to my ostomy and irrigation. I did forget a shower curtain hanger that I use to hold the irrigation bag containing the clean water, but I was able to improvise. I used very few supplies and even though I deviated from my normal eating, I didn’t have too many issues. It was nice to get back home and have everything right where it needs to be.

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The Ornamental Ass

It’s been over two years since I’ve been declared “cancer free” and to tell you the truth, I don’t think about cancer much anymore.  I talk about it from time to time with other cancer survivors, but aside from the checkups now happening twice a year, it doesn’t occupy much time in my mind.

Now I mostly deal with the aftermath of the surgery that was needed to get the cancer out of me.  There’s not a lot to talk about concerning cancer, but I’ll have this colostomy for the rest of my life and I think I can write a little bit about the goings on of having one.

So moving forward I’m changing the name of this blog.  It will be the second change since I started.  The blog was originally called, Life With Colon Cancer.  After my last chemo treatment and my oncologist told me I was cancer free, the name logically changed to, Life With(out) Colon Cancer.

So now I’m thinking about The Ornamental Ass.  It was something I said shortly after surgery when I had my tumor removed and I no longer had the plumbing to go to the bathroom normally.  My behind no longer had its primary function.  That function had been moved to the left side of my stomach, forever.  My ass was no longer functional, it had simply become ornamental.  It was a joke.  The kind of joke an ostomy patient can make about himself.  It was and is funny because we all knew I was on my way to healing.

My life as an active cancer patient is behind me.  My life with an ostomy is on going.  I think there is plenty I can still talk about.

Posted in Ostomy | Tagged , | 1 Response

Made Me Nuclear

In honor of my PET scan today,  I give you Made Me Nuclear by Charlie Lustman.

I met Charlie while getting chemo one day.  He was touring around cancer centers in Nevada, playing his guitar and singing songs.  He gave me his album which he wrote about his cancer experience.  I listened to it often while I was sick.

The test is done.  Now a week for results.

Charlie Lustman
Posted in Cancer | Tagged , | 1 Response

Time For Another Checkup

It’s that time again.  Time for blood work and time for a PET scan, my least favorite of the scans. 

Tomorrow is blood work.  No big deal.  They’ll draw some blood in the morning before I go to work.  Do a few tests.  Should be pretty quick.
Friday is the PET scan.  Unfortunately the only time I could schedule it was on the back half of a work day.  So I’ll have to leave early to get it done.  No eating for four hours before the scan.  On the plus side, I don’t need to drink any barium like you do if it were a CAT scan.

Then the following Friday I’ll see the doctor for the results.  This will be the first checkup after passing the magical two year mark.  My risk of the cancer coming back goes down somewhat after two years.

And yet…

The anxiety still kicks in a little.  I feel good, but they still have to do the test and I have to hear the results.  It’s the damn lottery all over again.

It’s the same pattern.  For months I don’t even think about it.  Then about a month out I remember I have a test coming up.  Two years ago I would remember the day and time.  A years ago I would remember the week, now I’m down to remembering that my tests are sometime during the month.  It used to be that I would be anxious for a month before the tests.  Over the years that time decreased.  Now I’m just starting to get anxious the day before they take blood.  All good signs, but it is still two weeks from tests to results. 

I’m not sure how long I’ll be on the six month plan.  I wonder how testing will feel yearly.  I wonder if I’ll always get this anxiety as long as I’m tested?

Posted in Cancer | 2 Responses

Two Year Milestone

Two years is exactly how long I’ve been cancer free.  You know, it’s been a fairly routine year.  I’ve let many other cancer anniversaries pass this year without much fanfare.  I’ve noted them and moved on.

Don’t get me wrong, I still remember the dates, but they don’t hold me like they used to.

9/13/2010 – Diagnosed
10/11/2010 – Radiation & Chemo Starts daily
11/22/2010 – Radiation & Chemo end
1/17/2011 – Biopsy to see how treatment worked
1/20/2011 – Bad news from the biopsy – Colostomy needed.
2/7/2011 – Fly to NYC to see doctor at Sloan Kettering for second opinion
(Agree colostomy is in order)
3/4/2011 – Colostomy surgery (Out of work 4 months)
5/16/2011 – Chemo Starts (bi-weekly, 12 sessions)
6/20/2011 – Back to work
10/3/2011 – Last Chemo Treatment
10/17/2011 – Clear of cancer

It took a little over one year from diagnosis to remission.  It seemed so much longer going through it and now it seems so long ago.  It seems like having the colostomy is so normal now, so not a big deal.

A doctor warned me that the radiation and chemo has aged my insides by ten years.  I was told I have the bones of a 55 year old now.  The thing is, I’m so much healthier now than before.  I do things I didn’t do before.  Things that I never thought I would ever do before, old bones or not.

So I have these anniversaries that come and go without much fanfare, but two years cancer free is a big one.  At two years the risk of cancer coming back reduces greatly.  Before I got here, two years was a finish line.  The reality is, the road just keeps going.  I need to stay on that road and keep moving.  I can’t turn off on to the sidewalk and have a fried Twinkie, as much as I want to.

So something that consumed me for 1/45 of my life is going to impact me for the rest of it.  I’m okay with that as long as I can keep it positive.  It’s easy to forget the path I was on.  At two years it almost doesn’t seem like it happened to me.  I haven’t written to this blog in a long time because there is very little beyond the routine to talk about.  Cancer is not a part of my life, and that’s awesome.

My next major milestone is five years.  At five years I stop seeing my oncologist which I can’t really imagine right now.  So I have to keep running and not fall back into old habits…  I can do that for another three years.

Posted in Cancer | 4 Responses