“My Voice” by Darren Neuberger

Darren Neuberger - 'Survivor'

How many of you have ever had a cough? How many of you have ever had a cough that lasted longer than 7 months? A cough, a simple-stupid cough – who would have thought that it would have changed my life forever!! This annoying little pest started in January 2003. I was 34 years old and in great shape at this time in my life. 2 different docs told me on 2 separate occasions that ” it’s cold and flu season – you have a cold”. Who was I to say any different – fact is – I never get/got sick and I was feeling great. The last straw came on the August long weekend 2003. I just got home from another month of work up in the beautiful northern Rocky Mountains near Jasper and Mr. Cough was still by my side – BFF!! I was only to be home for 5 days this time and my wife had had enough of my new BFF. She insisted I go to the ER at the hospital and DEMAND a chest x-ray. She went on to say ” and don’t come home until you get one”. Like a good husband, I went to the ER and told the ER doc. that “my wife said I need a chest x-ray”. He didn’t want to give me one for 2 reasons – first, proper protocol says that you need a requisition from your family doc. for any procedures and reason #2 – ” you’re fine – you’re chest sounds clear – IT’S PROBABLY JUST A COLD” I said -no way!!  If you don’t give me an x-ray – ” YOU’RE COMING HOME WITH ME AND TELLING MY WIFE WHY YOU DIDN’T GIVE ME ONE”!! The doctor seemed mad at me for that statement – truth is – I was tired of being tired and I wanted Mr. Cough to leave me the F##k alone!! So I said – “oh, by the way mister bucket of knowledge, I’ve been watching this lump grow in my left collarbone area. It doesn’t hurt, but…. I’m not even sure why I mentioned the lump, but it ended up saving my life!! The ER doctor seemed rather intrigued by this ‘lump” and I sensed a shift in his behavior. Curiosity got the best of me so I asked, “ hey doc, what’s going on here – you’re kind of freaking me out”. He looked me square in the eyes and, true story, said to me point blank – “now Darren this isn’t my specialty, BUT, I THINK YOU HAVE CANCER”!! The dude must have fell on his way to work today and banged his head because I DO NOT HAVE CANCER!!

Not only did I get that dreaded chest x-ray, I also had blood work/blood cultures and a CT Scan – STAT!!  We waited in the tiny, stinky little ER side room, neither of us saying much because there was still that hope that it wasn’t cancer. Deep down in the depth of my soul – I knew that the news would not be good, but I wanted to put on the brave face for my wife who was trying to do the same for me. FINALLY the door opened up – it felt like we were waiting an eternity – and a new doctor walked in. This can’t be a good sign – where’s the ER Dude I thought to myself – the doctor introduced himself and said that the news is not good, I definitely have cancer. He said he wasn’t sure what type of cancer I have and the next step is to wait for a phone call from the Tom Baker Cancer Centre at the Foothills Hospital in Calgary. This was Friday August 1, 2003 – the start of the August long weekend, or as I call it, the longest long weekend of my life. So many things raced through my mind – how can I have cancer; I’m only 34 years old? – When am I going to die? —I don’t have any life insurance or a will … we struggled with so many things, do we call our families? We only knew I had cancer, not what type, what my prognosis is, how long I have to live and quite frankly, we had no idea where or who to turn to for these answers because cancer doesn’t happen to people our age. The phone call finally came on Sunday and they asked me to be there the next day around noon, When I hung up the phone the feeling was surreal – I’m about to come face to face with my mortality at the age of 34! My wife drove us up to Calgary and as we pulled into the hospital and walked up to the building I remember it so vividly, this big, grey stuccoes building that said Tom Baker Cancer Centre on the side as I was walking in I kept saying to myself – “wake up, wake up, this is not happening!!”

My wife and I FINALLY got to check into a room and we briefly met a doctor and of course those amazing nurses – whom I think truly run the show – and was given a plan for the next day – one more sleep and then I learn my fate!

Tuesday August 5 – D-Day, the day had finally arrived. A knock on my door presents itself with a bunch of white coats, some short (interns), some long (doctors) and some lab people. It was pretty full in my penthouse suite and the reason for the fan club, a bone marrow aspirate! Now we wait for the results. Jaylene and I were called into the small waiting room by a hematologist and his resident. It was then that they broke the news that I have acute lymphocytic leukemia and that my prognosis is 76% chance of getting it in remission. The treatment protocol is long, 2 years straight of treatment and I’ll be an inpatient for the better part of 5 months… do you have any questions?? Ah, yeah, AM I GOING TO DIE!!! My wife, in between tears asked, what I thought was the stupidest question ever – but a very intelligent question- will this affect his chances of being sterile.  This is a great question for all young adults facing cancer to ask because high dose chemo and certain radiation treatments can make you infertile. To make a long and humbling story short, I had to, prior to chemo, go drop off a deposit if you know what I mean! So many things to think about, both our families live in Saskatchewan and the trip to Calgary one way by car is roughly 800 kilometers, so we knew that they would probably only come out for the first week. What about my job, insurance, our bills, our dog…. We don’t live in Calgary and my wife had only been working at her job for almost 3 months. My wife, man we haven’t been married for 3 years yet and there’s a chance she could be a widow at the age of 29!! So much uncertainty and my fate is in the hand of others. Good thing that I have a sense of humor and had such an amazing team around me. After the first week had come and gone, I had a central line inserted into my chest the very next day and started chemo the next day. Our families had gone back home and Jaylene had to go back to Lethbridge (2 hours away) to work. I was alone throughout the weekdays and Jaylene was there every weekend She is amazing, because I switched careers prior to my diagnosis, I wasn’t working long enough to collect benefits and Jaylene was a recent college graduate so her job was on the entry level pay scale, she worked 3 jobs so we could pay our bills, keep a roof over our heads and eat. She never missed coming to see me on the weekends. During the first month of treatments the doctors gave us a weekend pass. We were very excited, because I had no immune system my instructions were to wear a mask in public and to monitor my temperature – if it rose to higher than normal, get your ass back to the hospital. Later that day, were having supper and I started to feel chilly. Very odd considering it was very hot outside, so we went back to the hotel .My temperature showed that it was rising so we had to cut our weekend pass short, back to the hospital we go. Later that night Jaylene said I went to the bathroom and came back and plopped myself on the bed. She said something wasn’t right so she took me back to the bathroom and once in the light, noticed my eyes were huge. A quick call to the nurse and the two of them got me back into bed.  It turns out my temperature was a whopping 106.5 degrees and my blood pressure dropped to 42/22. Once my fever broke they could only get my blood pressure up to 52/32 so off to reverse isolation in ICU I go. I spent 32 hours is ICU and because I had no immune system, the reason I was so sick was I gave myself ecoli.

On July 27 2005 I had my very last chemo treatment and when it was all said and done, I endured 2 years of treatments which entailed to the 5 months as an inpatient in the hospital, over 600 chemo treatments, 2 weeks of brain radiation, 1 ALL INCLUSIVE trip to reverse isolation in ICU and over 17 units of blood and platelets transfused into me. Jaylene and I have had the great fortune to celebrate 6 more wedding anniversaries post diagnosis and on Aug. 5 we celebrated year 4-post treatment – still showing no evidence of disease. I went back to work in 2006 presently I’m working with a baseball academy as their fund development manager. I volunteer for the Leukemia and Lymphoma Society, Canadian Cancer Society, Canadian Blood Services, Young Adult Cancer Canada, IM Too Young For This and have been a guest speaker many of these organizations as well.

Throughout my journey with cancer I have seen the full affect this disease can have on a patient and their families, but at the end of the day, I wouldn’t change anything! Being a cancer survivor is the greatest achievement that one can accomplish. You see the world in a different perspective than most and for me, it’s pretty freaking amazing! I am putting together a book project of young adult cancer survivor stories called Let’s Talk About It – look for it in the next couple months – and I am well on my way to a career as a motivational speaker. Surviving cancer has shown me that the sky is the limit as to what I can and will accomplish.  Just know that even though our own personal journeys with this disease are all uniquely different, we can take pride in the fact that we all share a common bond and that is – WE ARE ALL SURVIVORS!!!

Don’t forget to laugh!

My name is Darren Neuberger and I’m proud to say that I’m a survivor!