Dec
2013

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
Dec
2013

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?

Oct
2013

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.

Jun
2013

My Love / Hate Relationship With Food.

I’m feeling sick this morning.  It’s not surprising because I’m on vacation and haven’t been eating well.  I’m eating much better than I ever did before cancer, but worse than I normally do these days.

I have this difficult relationship with food.  I love to eat, but now I get feedback pretty quickly that I’ve made bad choices.  Unfortunately I usually have to live with those choices for a few days for it all to pass through me.

You would think knowing that, I could control my food intake and make better choices.  It seems like my ability to make good choices is severely limited when I have something sugary and delicious in front of me.  I seem to be an all or nothing kind of person when it comes to food.  I can’t seem to just have a taste of something sweet.  I turn into the cookie monster.

Since the ostomy surgery my stomach ache is always located right behind the stoma and it is always connected to nausea.  Sometime irrigating helps, sometimes not.  When I eat poorly I also find myself filling up the colostomy bag even though I irrigated for the day.  Irrigation takes longer as well.

With all that you would think it would be easy to control my diet, but I still struggle with it every day.

Jun
2013

Surviving and Feeling Guilty About It

I’ve been struggling to try to write this blog for a week now.  Some friends and I were chatting a few days ago.  The discussion was about survivor guilt.  It’s a complicated emotion because on one hand you’re thrilled to have won the battle with cancer and want to shout about it and celebrate.  On the other, you know people who are having a difficult road through the illness or have lost their battle all together.

I think all survivors must feel it to some degree.  I know my friends do and I know I do.  You know that no matter how your journey through this illness went, there is always going to be someone who had a harder time than you.  What seems almost routine and successful to you didn’t work at all for the person sitting next to you, and that is jarring.  You want there to be a really concise reason why it worked for you and not for somebody else.  But there isn’t, and it sucks because it should have worked for the other person.

My friend is struggling with being a survivor.  She is struggling with the fact that her treatment was surgery without radiation or chemotherapy.  Because she missing those treatments she is struggling with identifying herself as a cancer patient.  She doesn’t feel brave for having gone through the surgery and coming out okay on the other side.  She does feel that I was brave for going through the surgery, radiation and chemo and came out okay on the other side.

The truth is, I don’t feel brave either.  It’s not bravery when you have no choice.  It’s not brave to choose chemo and radiation when the other option would probably mean death.  The bravest thing we both did was to put our trust in the people who were going to save us.  Sure we made choices, but our choices were made based the information the people we trusted with our lives told us.  My biggest fear was not the chemotherapy or the radiation, it was the surgery and what my life would be after it.

You know that feeling you get when somebody tells you they have cancer?  That, “shit, I don’t know what to say” feeling.  That, “my problems are nothing compared to his” feeling.  That, “I don’t want to ask how he’s doing because it might be bad news” feeling.  That, “I don’t want to talk about my good news because it will just remind him of his bad news” feeling.  We all get that too.

But here’s the thing, at least for me.  When I was sick, I knew I had cancer and I dealt with the feelings when I was diagnosed and throughout the treatment.  Talking about it didn’t make me feel worse, it often made me feel better to get it out there.  Hearing somebody else’s good news made me feel happy and not bitter.  The truth is, through my journey I had victories.  I also had setbacks.  That’s life.  I like to think other cancer patients feel similar to that but I can’t speak for them.  I do know that when I was in chemotherapy, there were very few mopey, down people.  We would trade stories about what we had and where we were at and nobody seemed to be keeping score of who had a tougher time than the other.

I know I’m rambling a little at this point but here’s one last point I want to make.  That first moment when you get diagnosed.  That moment when there is a person telling you you have cancer.  We are all the same.  We all have that feeling of dread and wonder what our future will look like and how long it might be.  We are all “real” cancer patients.

 

 

Jun
2013

PET scan and the wait.

I’m sitting in a comfy chair waiting for radioactive sugar to circulate through my body so I can get scanned. Elton John is playing softly on the radio.  I keep my movement to a minimum so the scan doesn’t get muddy.  I don’t want the sugar fueling my muscles from moving around too much.

There’s not a lot to do but read, rest and think.  I was reading a blog from a fellow cancer patient who also happen to be going through a PET scan.  She is feeling similar to I am right now.

It’s funny because up until this moment I wasn’t feeling anxious about the test.  Soon I’ll get scanned and it will be recorded, and I won’t know the results until probably next week.  Somebody will know, but not me.  For some reason not knowing is okay when nobody knows, but once I know the information is out there I get anxious.

They should really find a way to get information to the patients faster.  I heard the results are known in hours but we are still left to wait for days.

I know it’s my anxiety talking.  I was fine up until I had my injection. Now the thought of having to possibly wait until next week weighs heavy on me.  No matter how confident I was, there is doubt that has been creeping in while I sit here waiting…

image

May
2013

Ostomy Uncovered

 

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
2013

Looking Back

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
2013

Insomnia

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
2013

Two Years With the Ostomy

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!