About five and a half years went by, and aside from a couple of false alarms, everything was fine.  During that time, I made some changes in my life and was living in Arizona.  I was at the point where I wanted to have an identity that didn’t include cancer, which I couldn’t have living in my hometown.  (There might be a little bit more to it than just that but you’ll have to wait for the autobiography for the rest of it.)  I was living with my brother, made some good friends, and was working hard toward making a career for myself.

          Right after Thanksgiving of 2006, my back started bothering me. It was pain that I had never felt before and I didn’t remember doing anything specific for it to hurt like this.  I gave it a little time to get better and even tried going to a chiropractor, but neither seemed to help.  As it got closer to Christmas, I started feeling worse.  My legs were feeling very tired, I was short of breath and I was losing the feeling in my feet and hands.  I was on a plane home right after New Years. 

          It took a few days, but it was crystal clear on the MRI.  I had a tumor on my spine, which turned out to be Hodgkin’s, between my C5 and C7 vertebrae, which is basically at the base of my neck.  We decided that I would have surgery to try and remove the tumor.  The problem was no one knew how successful the surgery would be.  We were taking a pretty big chance because of how extensive it was just to get to the spinal area. 

          The doctors went through the front of my neck and would have to break small bones and tendons along the way.  They were going to have to rebuild the area with a mesh cage afterwards.  But the tumor had actually grown around my spine, so when they were done in front, they flipped me over and went in through the back.  My mother had to give them permission half way through the surgery to do this.  The five-hour procedure turned into nine or ten hours, requiring two surgeons. My spine is now fused together with two titanium rods and four screws on each side.

          I’ll never forget the empty feeling I got when the surgeon came in to tell me that they could only remove about 30% of the tumor.  I started to cry, and he reminded me that it was my family’s job to worry and that it was my job to get better.  I thought that was easy for him to say, but very true at the same time.  My head felt like it weighed about 1,000 pounds on my neck and I was in a brace and very sore for the next couple of months.  Although I realize it will never be the same, I can now do just about everything I like to do.

            The next step was to radiate that area of my spine, which was tricky because of the amount of radiation I’ve already been exposed to.  The problem lies in that your spine can only withstand so much radiation before the doctors have to start worrying about paralysis.  I went through somewhere around twenty radiation treatments, although I really don’t remember exactly how many.  Everything was looking pretty good because on my next MRI, they couldn’t tell if it was scare tissue or a tumor, which is a good thing.  All of this, however, would not be a good long-term solution. 

            The best long-term solution for me, I was told, was to go through another transplant, due to the complexity of my situation.  More chemo would not work because of a protective area around the spine which chemo does not penetrate.  This helps explain why the Hodgkin’s came back where it did.  I can’t get any more radiation later on because of the amount I’ve already received, so the best option would be to try another transplant.  This transplant, an allogeneic transplant, would be done with the stem cells of an unrelated donor because my brother is not a match.  And in this case, they found two umbilical cord matches.  They have been doing these types of transplants for the last couple of years with moderate success.  Because umbilical cord blood is basically virgin blood, they have had more success using them when exact matches are unavailable. 

          On May 22, 2007, I was admitted to Bigham and Women’s Hospital where they perform all the inpatient procedures through a partnership with Dana Farber.   This transplant differed from my first one in two major respects.  The first was that the chemo was a lot more tolerable with less side affects.  The second was that it would take longer, post transplant, for my blood cell counts to come up high enough for them to send me home.  In all I spent 46 days in the hospital, basically in isolation. This was by far the toughest thing I’ve endured through the 8+ years I’ve been dealing with this disease.

          After I was released from the hospital, I was having weekly check-ups to determine what percentage of my immune system is mine and what percentage belongs to the two donors.  While I was still in the hospital, it showed that the percentage was pretty evenly split among the two donors and me, about one-third each.  However, when they ran the test again after a couple of weeks out, they could see that my immune system was taking over.  By the third week and third time repeating this test, my body had rejected the umbilical cord cells and had gained 100% control. 

          Usually, when your body rejects donor cells, as it did in my case, they normally have to do another transplant right away out of necessity.  I was also told that they never had a situation where somebody’s cells came back so strongly and quickly.  So I had time on my side as we began to search again for another donor, live or umbilical cord, and prepared for another transplant. 

          My family and I decided to get a little proactive in the search and have a blood drive sponsored by the Red Cross along with a stem cell donor drive sponsored by the Caitlin Raymond International Registry.  This allows people to get tested and added into the International Donor Registry.  I’d be lying if I said that we didn’t do this to find a match for myself but I would be just as happy knowing we found a match for somebody.

          On September 16^th, 2007, we had the 1^st Annual Lucky 13 Foundation Blood and Donor Drive.  With the help of the Red Cross and Caitlin Raymond, we collected 110 units of blood and registered over 300 new donors.  It was a weekend long event that began with a benefit on Friday the 14^th and ended with a car show and another party on Sunday.  Talk about an overwhelming experience.  I still can’t believe the number of people who showed up to support me over the course of those few days.  Thank you to everyone who contributed in any way over the course of an unbelievable weekend.

          A couple of months had gone by and something remarkable was happening.  I was feeling pretty good, but even I couldn’t predict the news I received on November 20^th.  A PET scan showed that the Hodgkin’s had disappeared.  I had had a couple of “spots” that they were monitoring, but the latest scan had shown that they were gone.  Are you kidding me??  What news!  As it turned out, I would not be in need of another transplant after all.  Sweet!!!

          I’ll never forget the day that I found out.  Dana Farber, if you’ve never been fortunate enough to find out, and I hope you never do, is filled with a bunch of little doctor’s offices.  So we were waiting for the results of the scan in one of the “offices”, and Fisher is about to walk in the room, at which time his assistant grabs him and says “I need 5 minutes.”  Are you kidding me?!  I’m about to find out the most important news of my life and you need “5 minutes!”
Well he saved the suspense and said “Scans look good I’ll be right back.”  This was by far one of the better moments of my life.  I’ve never felt so much relief. 

          Fast forward a couple of months.  I had been toiling along.  I had a few doctor’s visits, but not much going on in my life.  I started wondering if this was what my life would be like.  Not making any professional or personal advances, but not having any health issues either.  Life wasn’t bad.  I was fairly healthy.  But my life would never be complete. 

          Coupled with the urging of a good friend, I decided to apply to graduate school at UMass.  I had a lot to do in a short amount of time since I had already missed the application deadline.  I had to apply.  I needed to retake and score higher on the GMAT test (Thanks Mike).  I also had to get letters of recommendation, write an essay and hopefully be invited for an interview.  UMass is a beautiful place, especially during the first really nice days of spring,   which is when I happened to be there for my interview. 

          “Congratulations on your acceptance to UMass.”  That’s what the subject line of the e-mail read.  I was psyched!  What a difference a year and a half makes.  I went from having had no idea what I was going to do for the rest of my life to making plans to get my Master’s in Sports Management.  They say “Everything happens for a reason.”  They also say “What doesn’t kill you will only make you stronger.”  I’m pretty sure there are a few different clichés that you could use in this instance.   All I know is that this is something that I’ve always wanted to do.  I’ll be moving to Amherst in September.

          Not so fast!  Something wasn’t right…again.  It was sometime during April when I first felt a couple of, let’s say, abnormalities.  I, like most cancer patients, am constantly feeling the areas of my body that I know have been troublesome in the past.  Whether I’m in the shower, getting dressed or driving down the road, I will probe my neck or armpits, feeling for swollen nodes.  Well as luck would have it, I found some.  I could feel the nodes in my neck beginning to swell.  After a couple of weeks of denial and destructive behavior, I had another doctor’s appointment.

          A PET scan in May showed once again that the Hodgkin’s that I’ve been dealing with had returned.  What were my options?  I had received every type of treatment available to this point and this disease keeps coming back.  That was my mindset as I waited in the office this time.  What’s next? 

          Well “next” is an experimental drug known to me only as L.B.H.  I’m sure it stands for something, but neither Dr. Fisher nor I know what it is.  And frankly, I don’t care to know.  What I know is that it’s an experimental drug still in clinical trial.  It was originally developed to fight Leukemia however researchers learned that it was effective in fighting Hodgkin’s. 

          I’m currently in my second cycle of L.B.H. and doing pretty well.  Each cycle consists of 4 weeks.  I take 3 capsules Monday, Wednesday, Friday, every other week with minimal side effects.  Compared to everything else that I’ve been through, this really is a “piece of cake”.  Because I’m part of a clinical trial, daily trips to DFCI for blood work and EKG’s were, at first, necessary.  As time wore on, the trips became less frequent and beginning next week I will only have to go once every other week. 

          None of my future plans have changed.  I still plan on attending UMass in September, assuming I find a place to live.  My “friends” at DFCI were adamant about me keeping my plans, to keep an eye on the future.  At first I wasn’t so sure.  But after a month, scan results showed that the swollen nodes had shrunken to a point where what was showing up, could in fact be nothing.  I think otherwise, at least for now.  People say that attitude is everything, and right now I’m confident that my next scan will show even greater improvement. 

          As I begin a new and exciting time in my life, I know my cancer will continue to be a part of it.  If so, I know that my life can also be productive.  The hope is to be in remission after another cycle or two.  However, I can stay on this drug as long as it remains effective and more or less “deal” with cancer.  For now, I’ll take it…  

          Feel free to e-mail me if you are a patient yourself and have a specific question about something that you might have to go through.  I’d like to help.  If you are a survivor or in remission and would like to share a story, maybe you’d like to post it on the blog.  Use this site for everything that you can get out of it to make your life easier or to help someone else, that’s what it’s here for. 

Thanks for reading my story,