The Dragon Gate

By , Jul 21, 2012

I am a cancer warrior.

I was born and raised in France. In 1992, my wife Isabelle and I moved to the suburbs of Washington DC to make a life in this country. We have a son, Matthew, who was born in 2001 and who will one day be the President of the United States. Or a martial arts movie star.

In September 2006, after two weeks trying to figure out why I was feeling so fatigued, my family doctor referred me to a blood specialist at Holy Cross Hospital, in Silver Spring Maryland, to “rule out” serious blood diseases. A few hours after my first bone marrow biopsy, I was diagnosed with acute myeloid leukemia. So much for ruling out! The initial shock about this diagnosis was somewhat tempered with the prognosis from the oncologist who explained that we could cure it. When I asked if I should panic, his answer was: “unless you see me panic, don’t”. I took this advice to heart and stopped panicking that day. The 30-day inpatient treatment started right away. That same evening, I had an IV in my arm…The next morning, a port was implanted under the skin of my chest, to facilitate transfusions and prevent damage to my veins. I called it my USB port. As my doctor described the side-effects I would face, I pretended to worry about losing my beautiful hair. He did not lose a beat and, with dead-pan humor; pointed at my already bald head and said: “I did not think it was worth mentioning…”

My mid-life crisis was one of survival and I came out of it with a new outlook on my life and my loved ones.
Michael Dahan Cancer Warrior

Chemotherapy brought my blood chemistry to frightening low levels, with the intent to reboot my bone marrow. Steroids prevented nausea so I was not too uncomfortable. Transfusions provided red blood cells and platelets. The tricky part was that it left me without white blood cells, the main component of the immune system. I was vulnerable to infections and while the treatment was straightforward, the name of the game was to keep me from catching common germs or viruses that were now life-threatening to me. I had visions of the bubble-boy. But as it turns out, a patient’s body is the main source of germs, not the people around him. Putting a neutropenic patient in a bubble is only marginally effective and greatly degrades quality of life. Visits were highly restricted and I resolved to limit visitors almost exclusively to my wife and son. Filtered air conditioning, a lot of hand washing, masks and thorough cleaning of my room would do the trick. Also, at the first sign of a slight fever, strong antibiotics were added to my IV.

Isabelle came every day and Matthew was able to visit on the week-ends. She could only rest at the hospital as she worried too much at night, and I was taking steroids so I was very agitated. Many times, my oncologist would find me out and about in my room, sometimes doing push-ups, while Isabelle fell asleep in my bed. He always joked that it was hard to tell that I was sick.

I was in remission after just three weeks, the leukemia was gone. I still did three more rounds of chemotherapy that year, with two-week recovery periods at home in between. I elected to not undergo a bone marrow transplant, which is the best treatment for my type of AML leukemia, albeit a long and difficult one. I decided to take my chances with roughly 40% chances to stay in remission. My oncologist had rightly pointed out that statistics do not apply to an individual. I really had either a 100% chance of relapsing or a 100% chance to stay in remission. Time would tell.

In March 2007 I went back to work. Life was good! I finally made good use of my gym membership, hired a personal trainer and was soon in the best shape of my life. We traveled to France that summer and drove around the country to spend time with friends and relatives we had not seen in years. It was suddenly important to me to reconnect with those who were always on my mind but whom I would never make time to see. That summer was rich with beautiful friendship moments. We spoke very little of the leukemia but I knew it was on everyone’s mind and prompted us to seek out and enjoy those we love.

Unfortunately, in November of that year I relapsed, which was not entirely un-expected. Surprisingly, the anxiety that had always accompanied the possibility of relapse receded and left only the sad realization that I had to put my family through this again. The next step was to start chemotherapy again, this time at The University of Maryland Medical Center in Baltimore and hopefully put me back in remission to allow a bone marrow transplant in their state of the art Bone Marrow Transplant Unit. Fortunately, my sister Ilana was a perfect match. I was worried that it would be a difficult surgery for both of us. However, Ilana made it very clear that whatever was involved she would fly from France to do it at a moment’s notice. She is the hero of this story, my magnanimous angel (there was an unfortunate broken arm incident when we were kids: I had been suddenly very curious about the effect of gravity on my little sis sitting on a fence…).

Luckily, transplant technology has greatly improved: there was no surgery involved, only a bone marrow stem-cell transfusion! If it wasn’t for the very harsh chemotherapy prior to the transfusion, it would have been a walk in the park. Isabelle, Ilana, my mother, our best friend Virginie and Roseann, my favorite nurse, were in my room when the life saving transfusion of my sister’s bone marrow stem cell was performed. Instead of surgery, I was comfortably laying down, surrounded by my favorite women. Within days, my new bone marrow started doing its job and I went home Feb 1st 2008, with my sister’s blood running through my veins.

I was very frail after the long hospital stay and two harsh chemotherapies. The recovery period was longer this time. In addition to a “clean” bone marrow, I had received components of my sister’s immune system. This foreign immune system is more aggressive against cancer cells that might have survived chemo than my own immune system. The flip side is that it is also more aggressive against my own organs and I developed Graft v. Host Disease (GVHD). It can be punctual (I have experienced discoloration of the skin of my back) or chronic (it appears my liver will always show signs of distress which we are keeping in check with low dose steroids). There is no way to predict the occurrence or the severity of GVHD. The instructions about infection prevention post-transplant were quite daunting. We got rid of all our plants, Isabelle had all the rugs and AC ductwork professionally cleaned and I did not leave the house without a mask for a long time. However, we did not put a limit on hugs from my wife and son! Food had limitations (no take-out, no seafood, no raw fish or meat, no probiotic foods etc…) but nothing that I could not handle. However, my first sushi in a year really tasted incredibly good! My energy slowly came back and I finally was able to go back to work in April 2009.

I have now been in remission for two years and seven months. Statistically, I have very little chance of relapsing at this point. Of course, statistics are what they are, so it is always in the back of my mind. But the “sword of Damocles” hanging over my head feels a little duller every day. It also reminds me how precious life is.

This journey has not been all bad. First of all, it started at a time when I was wondering if I had true friends and enough love in my life… Silly me: from day one, the support we received from our relatives, our friends, close and distant, my co-workers and even neighbors and strangers has been overwhelming. Just in our neighborhood, people organized to bring dinner to our house twice a week for over a year, so Isabelle would not have to worry about cooking! That’s incredible, even by American standards. Friends, who live two doors down from us, took us under their wing and all but adopted us. To this day, we spend so much time at their place that we should probably pay rent…

My mother set up camp at our house to be close to me and to help Isabelle and Matthew. She had been caring for her sick parents and buried her father the day before I announced to her that I had leukemia. It was her “annus horribilis”, her horrible year. A history teacher, my mother recently told me that she had suddenly felt like a general who learns of a “reverse front”, when the enemy circles around and attacks from the rear. While Isabelle and Matthew were traveling to France last year for a much needed break, my father came for three weeks, driving me to the transplant clinic twice a week for follow-up. These were the best three weeks I ever spent with my father! Seeing my parents’ relief as I was getting better helped me realize the progress I was making.

My two childhood friends, Gilles and Mickey, came together in December 2007, to spend the last few days before my transplant with me. It had been 18 years since the three of us got together. At a moment’s notice, they came together from different continents and we spent some precious time enjoying each other’s company as we had done when we were kids.

I also have made lifetime friends with some of my nurses and doctors and truly believe that I received the best medical care available in the world at UMMC, wrapped in true concern for my emotions and quality of life. For instance, my young son was able to visit me frequently and never saw me even once with an IV in my arm.

After I relapsed, a nurse came to my room and, as she was attending to the medicine in my IV, started talking to me about energy. Even though my first reaction was to discreetly roll my eyes, Roseann ended up becoming an incredible source of calm resolve and, dare I say it, energy… There I was, the eternal skeptic raised with the very French philosophy of cartesian methodological doubt, finding great comfort in meditation, visualization techniques and the re-direction of the chi! Roseann, who since then founded Team Inspiration, is a powerhouse of positive energy and was the catalyst that helped my treatment succeed. She is also my dear friend.

The president of the company I work for and his wife visited me several times and kept in touch throughout this long process. A man of few words, he had some of the warmest advice and gems of support I have received. One day, as I expressed how worried I was about the effect that seeing me sick might have on my son, he told me that, on the contrary, I was giving him the gift of witnessing courage and that it would help him later in life. He also made sure that I not worry about my job waiting for me for such a long period of time. “Your job now is to get better. Through your hard work, you have earned your place with us. Take your time”.

And of course the bonds that Isabelle, Matthew and I forged during that time were the best thing that ever happened to me. My mid-life crisis was one of survival and I came out of it with a new outlook on my life and my loved ones. I am not bitter; I never spent a second trying to figure out why this happened to me, to us. On the contrary, I cherish what I have and I want to experience more joy and love. Looking back, I also realize that this fight was one of tenacity more than courage. I was in the thick of it, helped by steroids and pain-killers and was focused, most of the time, on the task at hand. Isabelle faced the real challenge as she cared for me and our son, putting on a mask of optimism when she had to face countless nights of anxiety. I know that had the roles been reversed, I would have crumbled under this horrible anguish. She conquered this with her natural grace. All I had to do was to let her calm aura surround me like a warm blanket.

Dragon Gate

While recovering at home, I read a lot. I found great comfort in the Japanese culture. Since a trip to Japan on business 12 years ago, we had in our home a Japanese piece of fabric that showed red carps (coï fish) swimming upstream and a dragon coming out on top. I always liked the aesthetics of the design but never paid attention to its meaning. I researched it and found that in Japan, the carp is said to painfully swim back upstream to the place of its birth like a salmon. It is a symbol of hardship and effort. The legend says that once it reaches its objective, it turns into a dragon. The dragon is therefore a symbol of accomplishment. To this day, the Japanese call this “going through the Dragon Gate”. It has come to represent for me this journey where, after a lot of efforts, much was accomplished. To bring it all together, when my father came to stay with me, he brought with him the samurai armor that was at his home for 30 years and with which I grew up. I never paid attention to the decoration on the chest-plate before: a dragon in a perfect circle… I realized that this dragon had always been with me.

This is my cancer warrior story, my journey to the Dragon Gate.

I hope that sharing it will help other patients or caregivers in their journeys.

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