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My New Race

Chronicles of a Diagnosis

 

By: Steve Brown 

 

Having always been a very healthy athlete, this next phase of my life really hit me hard. Life changed on February 24th, 2006. I was starting to have some difficulty swallowing and finally after ignoring the issue for quite some time, I decided to actually try to figure out what the deal was.  I made the necessary appointments, saw the necessary specialists, went through the standard pre-admission testing and made the commitment to have the enlarged freakozoid, alien growths removed. 

 

Everything was on schedule, until I received a phone call from the doctor who was to do the surgery. “Mr. Brown, something came back in your blood work that needs a closer look. We’d like to refer you to a Hematologist/Oncologist for further testing and put this surgery on hold until we fully understand what’s going on”.  The doctor went on to say that my white blood count (WBC) was a little high. Actually it was 10 times higher than the norm. 

 

In a very short period of time, I met with, was tested by, and had many discussions with a fair amount of experts in the world of oncology. A world I certainly didn’t expect to be visiting any time soon. But I wouldn’t have time to make those arguments. On February 24th, I received my official diagnosis of Chronic Lymphocytic Leukemia, referred to by those in the know as simply CLL. Call it what you like. I was told I have Leukemia. I have a form of blood cancer. The up tick to that news was that my CLL was caught very early and has an excellent remission rate and my prognosis was very good. But I was still struggling with the realty that the word cancer will now be used in the same sentence as Steve Brown. 

 

We left the doctor’s office with a plan. Dr. Shore was confident that chemotherapy would be the way to go. And given the early detection, 2-3 rounds should be enough to either knock this thing way off the radar so it wouldn’t need to be addressed again for a long time. Or annihilate it completely. I had already spoken to other medical experts and would do more of the same prior to starting any chemotherapy treatments. But there appeared to be no grey area or wiggle room in this diagnosis. There were countless blood tests done, a CT scan, a PET scan, and a bone marrow biopsy. And everything definitively pointed the same way: CLL.

 

So, the plan was to tell the loved ones, get ready for battle, suck it up, and beat the hell out of cancer. And I knew I could do all of that. And my doctor and his staff were very cool and understanding. They knew I was not their typical CLL patient and they were very supportive. I seemed to have connected with Dr. Stephen Shore from the beginning. Maybe it was the common spelling of our names. After all “Stephen” is very different from “Steven”. Everyone knows that.

 

Dr. Shore eased some of my chemo fears and gave me the OK to continue to train easily throughout my treatment. This was a compromise because he first wanted me to “give that stuff a rest”. But he soon realized that health and exercise are not a mere hobby of mine. They help define my core existence. And if that were also taken away, our problems would be far greater than just cancer. I knew exercise would take me to the place that I needed to be. I knew it would provide the proper perspective and mindset to give me the emotional strength that I would need. And staying fit and strong would only help my physical well being. I was committed to using fitness as one of my weapons in beating this thing. It was my way of showing the cancer that I was in charge.

 

Dr. Shore and I mutually respected and understood each other. This will sound crazy, but I also found something soothing in his name. It was almost mantra-like. “Stephen Shore”. Who the hell wouldn’t want to go to “The Shore” for treatment? My wife and I love the shore and that connection gave me some needed inner peace and positive energy.

I knew I had the proper perspective on this thing and I wanted people to hear from me directly how I intended to take care of this. I wanted to be in charge and I wanted to display the confidence and energy that would leave no room for any worry or doubt that I would beat this and be fine.

 

The support that my family showed me was incredible. My wife's side of our family pulled together an amazing Happy Birthday and Good Luck with Chemo party. Everyone dropped whatever they were doing in the middle of the week to be there, it was important for all of us and very special. 

 

The chemotherapy cycle would run one week on and two off. Then repeat. This cycle sequence is relatively standard protocol for most chemo treatment. The cocktail of choice for this disease is a combination of a conventional drug known as Fludarabine and what I’ve named the “smart bomb”: Rituxin. Rituxin is a pretty sophisticated drug that has specific marching orders. Unlike some of the more general, broader spectrum chemo drugs that basically kill off everything: good and bad, Rituxin knows how to target only the cells that it needs to destroy. My first chemo session was scheduled for March 6th.

 

As I settled in for my first treatment, I felt good. My wife was with me….I was comfortable and confident. I was eager to get started only so I could put this entire thing behind me. My first day and entire first week of chemo was basically one big non event. We showed up, I got stuck, they pumped me up with chemo juice, I tried to make as many goofy comments as possible, and then we went home. No real nausea or extreme fatigue. During the week I felt great. However, after a full week of that stuff, I did start to get a little fatigued and nauseous. But the feelings were very fast moving. I would wake up with enough energy to build a house, then fade a little and take a nap. Then wake up again and feel well enough to run a few miles. I’m convinced that staying active help dilute all of those chemo side effects.

 

I ran almost every day of treatment and had self talks along the way, reminding myself and the cancer that I was going to kick the crap out of it. I chuckled to myself at the absurdity of such a disease thinking it could set up operations in my home turf.  In fact I even ran home from treatment a couple of days. That move had the nurses scratching their heads. But that was also part of my master plan. 

 

A few days after concluding the initial round of chemo I had a follow up doctor appointment. The moment of truth, I thought. I was eager to see what kind of results this toxic exercise had yielded but scared to death at the same time. What if it hadn’t worked? What if I had pumped all of that poison in me and we didn’t get a good result. I didn’t know what to expect, so I tried to keep my expectations a little low. My pre-chemo WBC count was between 60,000-70,000. (The norm being 5,000 – 10,000) I almost fell off my chair when my post chemo count had dropped to 14,500. And equally as important, my RBC and platelets were still in a safe range: as was everything else for that matter. So, this stuff had done an outstanding job, and I didn’t appear to have suffered any breakdown or destruction of my good cells. We received even better results after round one that could have been expected.

 

The two weeks in between sessions was awkward. Yes, I felt good. And yes, my prognosis was great. I also kept running, rode the bike a little, and remained fit. But at the same time, this “thing” loomed over me and I didn’t like it. 

 

Finally, round two was upon me.  And it started with a bang. As promised, Monday of round two was to be a left-right combo punch of two drugs. The new drug being introduced, Rituxin, was scheduled as a 4 hour infusion drip. Prior to that, I would also receive the Fludarabine that I had become accustomed to.

 

I was relatively “ok” for the first 3 hours or so. But then had a pretty uncomfortable reaction to the Rituxin which included severe shakes and a fever of close to 102. The shakes were so bad, and the temp such a concern, that we stopped the treatment for about 20 minutes just so I could regroup. My temp, body aches and shakes stayed with me through the night. I had experienced what Rituxin veterans refer to as “Shake and Bake Syndrome”. But finally, around midnight, the fever broke and I got some good rest.

 

Remarkably, I was pretty much back to “normal” on Tuesday. Yes, I slept in a little. But given how bad I felt on Monday, I was amazed at how good I felt on Tuesday. Tuesday’s and Wednesday’s treatments were pretty non eventful. No real side effects. I got in some light running, and even threw around some dumbbells for the hell of it. 

 

Blood would not be tested again for another week. During that time, I took extra precautions to avoid anything or anybody that might do damage to an already slightly compromised immune system. I did however get in a few short runs and rides. In general, my spirits remained pretty high. They needed to be high to be able to fight the battle and to show everyone else I was OK and not suffering in bed with IV poles all around me. People would ask me how I feel in a soft and compassionate voice and I would snap back “GREAT!”, “How are you?”  At that, a few people looked perplexed and commented, “um, good … great …. Glad you feel so good”. I wasn’t being arrogant, just emphatic. I didn’t want people putting me in their sick friends category. 

 

So the goal at that point was to just maintain sanity, stay in shape, eat well, rest hard, and wait for the next doctor’s appointment to gauge success and determine the next steps.

 

My next follow up doctor’s appointment yielded outstanding results. The Lymphocytes were retreating, the rest of my WBC was good and my RBC and platelets remained at safe levels. I had two successful rounds of chemo under my belt, and I could start to rebuild again in preparation for the third round. Something happened during this off cycle. Some kind of switch went on at this point or something. Somehow I was becoming stronger than I had been pre diagnosis. My runs were becoming better. My overall fitness level seemed to be much better. And in general, I just felt better. I’ll even say that I felt cured.

 

In between these rounds of chemo, something truly remarkable happened. I was reluctant to get this personal but I figure if I just put the facts out there, you can arrive at your own conclusions and determinations. However, there is one night that I now feel is worthy of public mention. On April 12th, my wife’s cousin Sharon and her husband John came to visit us. The very brief background on Sharon is as follows: Sharon became very ill in the early 1990s with a condition that doctors simply could not get a handle on. She became bedridden, and wheelchair bound and was in excruciating pain. After many unsuccessful and futile conventional attempts with standard medical practices to try and diagnose and heal her, she finally turned to a healing prayer service. Immediately following one of these services, Sharon was on her feet and out of the chair. Within a week of attending this one particular service, Sharon was essentially cured and back to her normal self. Again, these are the facts; you arrive at your own conclusions.

 

Sharon and John came over to our house with the intention of praying for us and my disease. We spent some time getting caught up and hearing Sharon’s amazing story and then Sharon and John settled down next to MG and I and started to pray over us. 

 

Shortly after that, Sharon placed her other hand on my forehead and continued to pray. This was “the touch” that did something to me. I immediately felt a combination of goose flesh and butterflies that originated in the pit of my stomach and radiated out to my extremities and through the top of my head. It seemed to last several minutes. And as this was happening my eyes suddenly began to tear up with no apparent advance emotion or warning. More like a direct response or reaction to something. Shortly after that we ended our prayer. 

 

From that day on; I saw immediate and accelerated improvement in my condition. Certain lymph nodes which had been enlarged and had not yet responded to chemo were reduced to normal size in 3 days. My next blood draw was considered normal even for normal people. And the round of chemo that I had after that yielded even better results than the first two had. By this time, my doctor had considered my condition in a state of full remission. 

 

I headed back into chemo battle for round three on April 24th, 2006. I felt outstanding. I had an amazing 7 mile run the day before and I was really hard pressed to believe that I was sick. My blood work during that visit was completely normal. So, seeing the results, and knowing how I felt, I decided to press my doctor a little bit. “Doc, you’ve examined me, you are happy with what you see. I feel outstanding. And my blood work is normal. Is it safe for us to wrap the words PARTIAL REMISSION around my condition at this point”? He paused briefly. And then turned away from his laptop and said, “No”, you are not in partial remission, you are in complete remission”. 

 

I realized that even though I still had to finish the medicine, I had won. I hit remission within 60 days of diagnosis and went on to win. My disease was now at a safe enough distance from me that I could go on with life and not worry about it. And it left behind no ghost or reminder that would slow me down or make me alter my lifestyle in any way. I could go full steam ahead. I felt faster and stronger than I had in years.

 

I won. But I won a battle that I will have to keep a regular check on. I am a survivor. And although my remission was swift, I will need to maintain awareness and respect for the fact that something took a swipe at me – and missed. I won because I am strong. I won because I have an amazing doctor who made all the right calls. I won because I have an amazing family who stood by me, and a wife who sat through every treatment and every appointment with me. I won because I am healthy and did the right things. I won because I have an amazing group of friends as a support system. And I won, because I believe.

 

Within a couple of weeks of my treatment ending, I raced my first triathlon as a “survivor”. It was the Lake Lenape Sprint distance triathlon in July of 2006 and going into that race I never felt more alive or stronger. And on September 30, 2006, 7 months and 6 days post diagnosis, I crossed the finish line of career ironman number 8. This time as "RemissionMan".

 

Look for the link to purchase the full story on www.remissionman.com A portion of all proceeds will go to the Leukemia & Lymphoma Society.

 

 

"Be the change you wish to see in the world "... Gandhi

Copyright: 2009 Stephen Sinclair Brown