One Year Ago…..

One year ago, I was coming to terms with being diagnosed with this unbelievably rare form of cancer at age 24.  I had to leave my girlfriend in Thailand, leave one of my favorite places that I have ever been to, and end my job abroad.  I literally had to stop my life and now focus on this new battle in my life.  There would be no more teaching in Thailand and I can cancel the travel plans Anna and I planned for all of South-East Asia.  At this time last year, I was probably calling up Annie and telling her that I would not be going back to Thailand because I have cancer.  It is so ridiculous because I would joke around with Annie in prior months about how the thing behind my ear is a tumor, never dreaming how that thing behind my ear would change my life.  I was constantly crying on my mothers’ shoulder and trying to wrap my head around this new thing that has entered my life.

The first month or two of the new diagnosis of cancer is a whirlwind of decisions that need to be made.  It is meeting with tons of different doctors from different hospitals.  Who will be your surgeon? Your oncologist? Your radiologist?  Should I get surgery?  Chemotherapy?  Radiation?  When do I start?  Should I look into Alternative Treatment?  Will  it work?  What kind of cancer do I have?  Has it spread?  Where did it start?  How did it start?  Is it curable?  {Will I live?  How long do I have?  (I did not actually ask my docs about these questions, but I did think about it.)}  How will I tolerate chemo?  Will I get sick?  Along with all the questions and doubt that were running through my head, I was also thinking this:  Its time to go to battle.  I am young, I can beat this shit.  This is going to be easy.  When do we start?  I want to start now!  I didn’t care what stage or how far advanced the caner was because it didn’t matter.  I was going to fight and keep on fighting.

After finally settling down with the doctors, it is time to start with the treatment plans.  Believe me I was nervous because of this new unknown journey I was starting.  Will I get sick from the chemo?  Does radiation hurt?  Will it start to hurt after a couple of weeks?  But I also had the thoughts of lets get this started.  The quicker I start, the quicker the cancer is gone and dead.  I will be able to handle it all.  I will not lose any weight from the chemotherapy.  I will be fine.  I will kill cancer.  I had the tumor removed in January and we had to wait until March to start radiation and chemo.  Another reason why I think I have done so well is because my surgeon is DA MAN.  Dr. Cosantino is the best surgeon in the world and Thank the Lord that he was my surgeon. While I waited for my treatment, I was going to do some fun shit before it all started.  Railroad Earth did a little mini tour of two shows at Mexicali Blues Cafe and a show in Bay Shore, NY.  PERFECT!!!  The best night of the whole three night run was Saturday night at Mexicali Blues Cafe.  My whole family was at the show.  My Mom, Dad, Uncle Chris, Aunt Patti, Dave, Cat, Tim, Meagan, Annie, Whitey, Maggie and my mentor from Midland Park Don Elliot.  It was a truly amazing experience to see RRE with my whole family like this.  We were all front row and had the best time of our lives.  The next two shows were great, but different.  It was just Annie and I and the shows were a lot more mellow compared to Saturday night.  It was a perfect weekend full of family, friends and RRE.

I started treatment towards the end of March.  It would consist of 40 days of radiation treatment to my  neck and three doses of chemotherapy.  The scariest part of the whole treatment process was how normal it became to me.  It was like second nature to me like going to school.  It was normal for me to get up at 7 in the morning and drive into the city.  Sit in a waiting room for about five minutes and then go into the radiation room.  I would lay and get a mask snapped around my head, so my head could be in the same position every time I got radiation.  This became my life for about a month and a half.  And it was normal.  I would think to myself that this is normal and everyone has to go through this.  It was normal to get radiation lasers beamed into my body.  I wish I had my pictures of this whole process, but they got lost when my mother spilled green tea on my computer.  Love ya mom!!

So I finished all my treatment and I handled everything relatively well.  I definitely lost a lot weight because of radiation damage and it was hard to eat and nausea from the chemotherapy.  I can’t believe how much I gained weight from just beer over the years.  Once I finished my treatment, I thought to myself great.  I am done and I beat cancer.  For me, I believed that all you had to do was finish your treatment once and cancer would go away.  Cancer would surrender to radiation and chemotherapy just once.  It only took one time.  It was time to get my scans done and all we got checked was the lungs.  All the damage from radiation to my head and neck will show up on the scan, so we would not be able to see anything up there.  To get straight to the point, there was still cancer in my lungs.  It did not go away and for some reason it did not surprise me.  This is going to be tougher than just one set of treatment and done.  This is when I started to realize that this is going to be a marathon.  I might be battling this for years, not months.

Over the summer I just took it easy.  No treatment.  I went to Lake George with my family and enjoyed every second of it.  I started to set up a hammock at the end of our dock for the first time ever.  I have no idea why it took it me so long to come up with this idea.  Man, I was such an idiot.  The hammock was perfect swinging over the lake. I also started working at my dads work to keep busy during the day and start making a little money.  I went to the All Good Music Festival down in WV with Annie, Whitey, and Maggie.  This was a great time.  Yonder late night was the highlight.  I saw a couple of shows during the summer and fall.  Throughout this whole time I was doing an alternative treatment and not traditional treatment.  I was taking all sorts of supplements and vitamins.  I was getting IV vitamin c and a drug called laetrile.  I was drinking all kinds of supplemental drinks.  It was crazy the amount of stuff I was taking a day.  This was my new kind of treatment.  I was really believing in the body healing itself.  If I ate correctly and took all this stuff that my body would beat the cancer out.

Unfortunately, this did not happen.  The week after Halloween and the RRE and YMSB concerts I got sick.  I had to go to the hospital, which led to the start of a new round of chemotherapy.  Then again in December I had to go back to the hospital.  You can read all about it in my two blogs that I wrote before.

http://allaboutmatt.org/blog/nuthin-different-bout-december/

http://allaboutmatt.org/blog/when-the-going-gets-tough-the-tough-gets-going/

Now, its January of 2011.  I am on my 4th chemo treatment.  The last two treatments have gone surprisingly really well.  The main and most important thing is that I have had no nausea.  I have been able to eat and eat really well.  I actually have gained weight throughout these treatments.  The first time in a year.  After the third chemo, I had to get a chest CT to see how things are.  The scan showed a little improvement from the last scan.  Also, no cancer in my stomach or liver or kidneys or in that area.  This is the best news I got from a scan in a year.  So I guess 2011 so far has been a great year.  Well, it has definitely started off better than 2010 did.  I got two more treatments left of this chemo and then I am sure I get another scan and rest from any kind of treatment.  I am looking forward to the next two months because I am going to a couple of concerts.  I am going to see a bunch of RRE shows in February and a bunch of Furthur shows in March.  I am hoping to start subbing again at Midland Park in March or April.  I need to get back in the profession I love and want to be for the rest of my life.  It should be a good couple of months.

The reason I started writing this entry is to reflect on the year that I have gone through.  To talk about the “new or same perspective” I have gained since having cancer.  One, I hate the people who say that cancer is the best thing that has happened to them.  They say this because they have gained some new perspective and now appreciate life.  I got cancer at age 24.  It is way too young.  I wish I could party like a normal 25 year old would do on the weekends.  My whole life has changed.  Damn, I wish I could still drink heavily and party like I used to.  Who knows once I beat this shit.  I might be out partying again, but for some reason I doubt that.  Now that might be a good thing, but its waaayyyy too early in my life for it to happen.  I think to myself and sit here and feel bad for the people who go out to the bars every weekend and fall into this routine of doing that.  I am no longer a slave of doing that.  I now sit home on the weekends and watch TV, but I am no longer that kind of slave.  And that kind of feels good.  I guess that is one thing that I have learned.

Lately, I have been thinking whether or not I am using my time wisely right now.  Even though I have cancer I feel relatively healthy.  As of now, I go to bed late and I wake up late.  I sit around and watch way too much TV.  I am a LAMF as my uncle would say.  A lazy ass mother fucker; however, I say to myself I am recovering.  I am trying to beat cancer that is what I am doing.  I am getting healthy.  But in the back of my mind I am thinking that I should be doing more in my life.  I don’t want to say that I have been given a second chance, but I am healthy enough to do stuff.  I have been really sick and in the hospital before.  When you are that sick ALL you want and should do is lay around and rest.  Now, I feel like I should be out and about.  It’s hard though when I don’t have a job.  I get chemo every three weeks, so the week after chemo I am usually out of commission, but then I have two free good weeks.  Maybe right now its impossible to do anything.  Maybe I have to wait till I am finished.  Should I be exercising more?  Should I be going outside? Nahh, its way too cold out there right now.  I do enjoy the snow, but it is way too cold.

One of the hardest things is that everything has changed, FOREVER!!!!  I know that this is a very general idea, but what I mean is this.  Someone I  know now asks me how I sleep at night, every morning.  Never once as a healthy person was I ever asked this and now I get it every day now.  I get asked how I am feeling like four or five times a day.  My family are constantly coming back with things for me to eat like milk shakes and what not.  Lately, I have just not been able to handle it.  I know that it is selfish to get upset for my family getting me things, but it reminds me of being sick.  All this is new and gets associated with me being sick.  However, the important thing that I have realized throughout this whole year is how important and caring my family is.  There is no way in hell that I could have gotten through this year without my family.  They have been the one stable thing in my life this year.  My family is the one and only thing I can trust.  Thank you! Mom, Dad, Tim, Dave, Grace and Nanny.  I also want to thank my doctors.  My surgeon, Dr. Costantino and all his great students under him.  My radiologist, Dr. Harrison, who got rid of all the cancer in my face with his LAZERS.  My NY oncologist, Dr. Culliney, who is one of the most understanding docs out there.  My NJ oncologist, Dr. Rakowski.  And all the nurses I have met on the way.  Thanks!

The last thing goes along with how I hate people who say cancer is the best thing that has ever happened to them.  My whole life has stopped during this whole process.  Most twenty year olds are out traveling or starting their careers.  They are moving out and starting their LIVES!!!!!   My plans in Thailand with Annie had to end.  My career in education has had to been put on hold.  My social life, well I have no social life anymore.  The one and only person who I would see a lot that was not family, is now relegated to Sunday chats on Gmail.  One of the main reasons I went back to Thailand was to finally travel around South-East Asia.  Now I have to wait on that.  I cannot continue my job as a math teacher, which is really killing me.  I want to be back in front of a classroom interacting with students.  My career has been put on hold.  Annie and I planned on moving in together once we got back from Thailand, but that cannot happen because I don’t have a job and getting treatments.  Life stops!  And life becomes cancer.  It is all that matters because thats all I need to care about.  I need to beat it.  I will beat it.  I guess one thing that helps me get through it is that I rarely think about cancer.  When I am sitting on my couch watching TV, I am thinking that life is normal.  I am doing what most people do.  I am never constantly dwelling on cancer, which is a big reason why I have done so well this year, I think.  Believe me it is fucking hard not to just worry all the time, especially when scans are coming around, but thinking good thoughts and putting it out of your mind is necessary to achieve success.

You can tell my life has not turned out the way that I thought it would be.  But that does not mean I can give up on life.  I have to keep on going and get to where I will start living on my own and start my career again.  The one thing that I have thought about that has kept me afloat throughout this year is that maybe I got cancer to prove to friends and family that you can beat cancer.  I can beat cancer.  I am not really sure what I am proving or showing, but its something to my friends and family.  Maybe its that you don’t have to be scared when you have cancer.  I have no idea what it is, but I know its something.  I just hope people are paying attention and learning!!!

This will be the first picture that I have put out since losing my hair, so all of you better treasure it!!!!!  Take a look at the scar from the surgery.  It is barely visible and looks amazing.  I am pretty proud of it.  Thank Dr. Cos.

4 Comments

  1. **Rainb0w.w00k**
    Posted February 1, 2011 at 3:04 pm | Permalink

    “A box of rain will ease the pain, and love will see you through.”

    and what a lucky family they are to have YOU and your strength as an inspiration to them. good reflection piece matty.

  2. Jenna Katz
    Posted February 1, 2011 at 4:24 pm | Permalink

    thanks for being so honest in your blog. I have a friend going through a similar “battle” but it’s hard to get in his head. I am so sorry to hear this, I had no idea what you have been going through.

    I don’t know if you remember me, we studied abroad together back in da day. mmmm those were the days 🙂 I hope you get back there.

  3. Vincent Gillen
    Posted February 6, 2011 at 9:03 pm | Permalink

    good stuff matt. good stuff. which uncle used the LAMF phrase lol

  4. Graham
    Posted April 23, 2011 at 12:58 pm | Permalink

    very powerful & inspirational

Post a Comment

Your email is never published nor shared. Required fields are marked *

*
*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>