A Survivor’s Story

By Alex O

Editor’s note: In our insular world, the Lance Armstrong story has become old, and perhaps passé. But for many, especially the gravely ill, it has the power to deeply touch their lives in very real ways. Lance continues to bring cycling into the lives of people who never previously gave the sport a second thought.

We have included some of Roberto’s amazing illustrations in an effort to class the site up a bit–even we get tired of looking at skinny guys and carbon bikes after a while. See more of his work here..

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My name is Roberto Parada and I’m a 35-year-old freelance illustrator who has lived in New York City for the last six years. I love my job, which mostly requires working for reputable magazines like ESQUIRE, TIME, ROLLING STONE, and ENTERTAINMENT WEEKLY. It’s a tough job, but it fulfills the artistic desires I’ve had since childhood. However, all of this good fortune came to an abrupt halt in September, 2003, when I began feeling an overwhelming fatigue that I’d never felt the likes of before. I was alarmed and terrified at what I was discovering about the way my body began responding to routine, daily activities. For instance, going up a subway platform or even climbing a very minor hill left me breathless. I had kind of accustomed myself to being burdened with fatigue due to the nature of my job (which could include really long, late nights and sometimes all-nighters). But when I discovered prominent purple spots on my legs that weren’t going away, the alarm bells really sounded. When I started doing internet research, all the signs pointed to leukemia. I felt a slow draining of hope leave my body as I realized that what was going on was really serious and not something that would likely go away anytime soon. I quickly arranged a blood test with my primary care physician, trying to be hopeful that it wasn’t something serious, but looking at his face after he examined me, I could tell he was perplexed. He left a message the next morning:

“Roberto, you need to go to Beth Israel North Hospital immediately. Your blood shows that you are dangerously anemic and you’re going to require transfusions.”

I went to BI North after making some phone calls to let my loved ones know I’d be there. I tried to get some answers from the emergency room doctors as to whether or not it looked like leukemia to them. The best response I could get was, “We don’t know, we’ll have to do a bone marrow biopsy to find out for sure.” A bone marrow biopsy? That didn’t sound too pleasant! It’s when a hematologist sticks a long needle into your lower back hip bone, otherwise known as the Iliac Crest, the richest area of bone marrow. (They do use local anesthesia if that’s what you’re asking yourself right now.) I finally got a room at the hospital and soon began blood transfusions, primarily platelets and red blood cells. My blood counts were down all across the board and some people were shocked that I was even standing when I arrived.

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I knew I was in trouble, but I was ready to fight! But first I needed to know what I was going to be fighting. That wouldn’t be determined until two days after the bone marrow biopsy. The diagnosis: aplastic anemia. Whew! What a relief its not leukemia, I thought. I got lucky. I figured, “I can come back from this, right?” But I could never really get a straight answer. The doctors’ one belief was that the cause would be benzene- related. Benzene! What’s that, I thought. My brother, who is a doctor himself, was getting updates too, and said, “Hey that’s in your mineral spirits and the varnishes you clean your brushes with.” Wow! I wasn’t ready for that shock. Anyway, I asked the doctors, “Well, how do I treat this stuff?” They weren’t exactly sure other than to say “Remove the harmful agent from your daily life and wait to see if your blood counts come up.” They didn’t and I had to get more transfusions.

I went to an important website to learn more about aplastic anemia, and there I learned that the best way to treat this disease is through a bone marrow transplant from a matching sibling, but only 25-30% of those diagnosed have matching siblings. Slim odds by anyone’s standards, but I had an older brother. Could he be my life saver? I knew things were becoming more serious than I first thought, and I wasn’t going to have a quick recovery. I was dying and I needed an expert to treat this rare, orphan disease that affects less than a 1,000 people a year in this county. I fought with my insurance company and finally got approval to go to a great cancer institute at Mount Sinai in New York, where experts in this disease could treat me effectively. The first thing I did was to see if my brother was a perfect match. I anxiously waited for the results of his tests, but he came up imperfect. This was a big blow to my spirits, because the other treatment was immunosuppression with ATG/ Cyclosporine. That’s a serum made of horse antibodies that destroys and heavily suppress one’s T-cells. The theory is that aplastic anemia is an auto-immune system blood disorder and by severely suppressing the T-cells, the strongest immune cell, for many months, the blood counts might begin to rise, allowing me to slowly taper off the medication. It’s a long recovery to return to normal, but it’s effective in up to 70% of patients. It offered hope, and I would do anything to fight for my life. Before I began the treatment, I was fortunate to come into phone contact with people who had recovered and were doing well following this treatment. It was certainly a real morale booster! I have always been a positive thinker, and I wasn’t about to stop being one now.

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An artist friend of mine sent me a wonderful gift when I notified him that I had this life-threatening disease and would undergo the ATG treatment within a week to ten days. The gift was Lance Armstrong’s IT’S NOT ABOUT THE BIKE, which chronicles his fearless battle with late stage testicular cancer. I felt the fear that Lance felt before and after his diagnosis. How did this happen to us? Why didn’t we notice sooner? I could identify with the denial of having a life-threatening disease. Like him, I had always been healthy. I felt like his story was somehow my story, and it was hard to get through some of the pages. I really hadn’t thought much about mortality until I read through some of the chapters and it started hitting me very profoundly that this disease could very well kill me.

It was tough to read about all the physical and emotional pain that Lance had experienced before and during his powerfully devastating treatments. All this pain that he felt was probably waiting for me. One night in August 1999, I had been invited by MAD magazine to sit in the studio audience at the David Letterman Show. The main guest for the night was Lance Armstrong, on the heels of his first Tour de France victory. I had never really followed the Tour much, or even cycling for that matter, but he was inspirational that night. Look at what he did! He cheated death and then he wins the Tour De France! How could I not be moved by such an achievement? Little did I know at the time that some four years later I’d be fighting for my life and he would become my ultimate inspiration to beat severe aplastic anemia. I’m of the firm belief that when you face a major challenge in life, you need a hero to look up to who reminds you to fear nothing.

By March 2004, the first round of treatment was deemed a “partial response,” not good enough. So in April, I began round two with ATG/Cyclosporine and felt positive that this time it would work. But by June, I was failing miserably and had become totally transfusion-dependant, living virtually without an immune system. My bone marrow stem cells seemed to be completely wiped out and there was no chance of responding to immunosuppressant treatments now. The only thing left to try was a bone marrow transplant from an unrelated donor, a very risky option that required fearless commitment. I knew that Lance had to face up to his dire circumstances and make the commitment to get better by working hard, and I had to do the same to be successful in my transplant. I was fortunate to have found some terrific matches from the National Marrow Donor Program, so I felt like I had options.

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During the month of July, my doctors and transplant coordinators began preparing all the required physical tests I would need to complete before my transplant. I was in a weak state physically during these examinations but I knew at the beginning of a tough and transforming journey that I had to be tougher. It’s said that timing is everything and at this time I needed to remind myself that it was possible to overcome suffering and to win. It was July, and the Tour de France had begun and Lance was trying to win his sixth tour in a row. I watched it every day and almost every hour, even during transfusion sessions at the hospital. I needed to be reassured that destiny was with me like it was with Lance, so I felt like I had a personal investment in every one of his stage wins. In a way the Tour, for me, seemed to represent my transplant. A three week journey that required intense focus and the determination to snuff out all challenges. Some days on the Tour it looked like life or death out there, yet Lance reacted like the stoic and fearless competitor he is, gladly taking on every bit of adversity and always wearing his warrior face. The way Lance welcomed suffering and hardship as a rite of passage on the way to success is something we all should take note of in whatever challenges we may face in life. Seeing this heroic figure in action has inspired me to want to take up road cycling in my recovery. As a first step, I bought my first cycling jersey as a hopeful reminder that one day soon I’d get to wear it while climbing hills on my bike.

There would, however, be a bump along the way to my transplant as no road is ever entirely smooth. My first perfect match bailed out two weeks before we were ready to begin in late August, sending everyone, including myself, into a panic. I was still real fortunate though, because the transplant coordinators found another young match soon after this, and he was firm in his commitment to donate for me. I guess things happen for a reason, something I was about to find out.

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I went into the hospital on September 20, 2004, for what could have been the last trip of my life. I tried to not think that way, but it was sad for me to accept that it had to come to this. I now just wanted to work hard to survive the transplant. When I checked into the isolation chamber I was determined to stay tough and disciplined and do what they asked of me. My doctors and I were like a team, and I was a team player. In checking out my small and not-so-private room, I tried to get a feel for the world I’d entered into. I tested the comfort of the bed, which I refused to look at as a death bed (although I did think to myself that surely someone must have died in it at some point), and then the chair next to the bed. The chair that I hoped many visitors would come to sit. I made sure the cable was working, checked how many channels I had, and then I checked out the view of Central Park from my window. This was going to be my home for the next four weeks. First up, however, would be the installation of a Hickman Catheter into my chest which would be the direct channel for the chemo preconditioning before the transplant and then all of the anti-rejection medication I would need afterwards. Preconditioning was a week’s worth of radiation and chemo to empty out my remaining bone marrow and to prepare it for the new marrow, which would be transfused into the catheter as well, then into my bloodstream, and eventually settling in my bones. An amazing scientific achievement for sure!

Feeling rough and lousy was something to which I had to grow accustomed. Midway through the preconditioning, my artist friend who gave me the Lance Armstrong book came to visit me, and again and he brought me a special gift. This time it was the yellow jersey from the Tour de France. It was perfect and I knew I would wear it the day of the transplant for inspiration. That day came, and the jersey was on as the nurses connected my line with the bag of donor bone marrow hanging on the IV pole, as I was being filmed by the NY1 television channel, which had come to record a piece on my doctor at Sinai. The transplant lasted for a little more than an hour, and the worst of my side effects were some high blood pressure and a hell of a migraine. I had great rapport with all of my nurses, so I never felt like there was a dull moment. I needed them to be my friends as well as nurses. We were always on the lookout for signs of rejection (Graft Vs. Host Disease) but it never came, thankfully. The big moment of success came within a week’s time. It was the first sign of my blood counts rising, and it came in the form of white blood cells, which went from .1 to .3. I understood the magnitude of this, knowing that it would be the first sign that the marrow was growing and producing blood. In another week’s time it was at 7.9! Amazing! I was getting excited and anxious about the possibilities of being normal once again. After three weeks the doctors decided I was ready to recover at home, and I was released a week ahead of schedule. How victorious it felt for me to walk out of the isolation chamber on my own two feet and not wheelchair bound.

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Today, just beyond three months post-transplant, my blood counts are normal and I’ve resumed normal life and activity. However, I still remain cautious in regard to the new immune system that now lives inside of me. Nonetheless, I’ve been feeling great and I’ve recently started to work some. I’m saving up money for that road bike I’m looking forward to buying and riding, hopefully by the spring. I’m constantly reminded by something Lance said after his first Tour victory: “Second chances are much better than the first.”

Roberto Parada’s email is roberto@robertoparada.com