Most of us have been affected by cancer, either directly or indirectly, in our families, communities, and orchestras. Yet, few of us will have the experience of being in our twenties, practicing intensely, taking auditions, and being diagnosed with cancer in the midst of it all. I had the privilege of meeting tubist Joshua Lee a little less than five years ago, at the New World Symphony in Miami Beach, FL prior to his diagnosis. He played my very first week, and was delightfully funny, welcoming, and also an excellent musician. A few weeks later, I found out that he had been mysteriously sick throughout the fall of 2010 and was undergoing diagnosis and treatment for what was later revealed to be leukemia. Despite the challenges of treatment, travel, and stress, he has always managed to be a delightfully hilarious, optimist, and hard-working individual, and now, a few years later, is healthy and recently married cellist Allie Thompson, in Pittsburgh, PA. I asked him to share some of his experiences in music and life, and how his viewpoint has shifted in these last few years.
Kayleigh: For folks who don't know you, who are you?
Josh: My name is Joshua Lee! I live in Pittsburgh with my lovely wife (and awesome cellist) Allie Thompson. I am currently a freelancer (tuba) and an employee at Trader Joe's where I'll critique your purchases and if I know you well enough, open them up and start eating them.
K: How were diagnosed with leukemia? It seemed rather sudden at the time.
J: I was diagnosed with Chronic Myelogenous Leukemia (CML) at the age of 26 while I was a fellow at the New World Symphony. I believe I am fortunately still the only person to be diagnosed with cancer during their fellowship in the organization's almost 30 year history. I am still waiting for my commemorative placard or possibly a limited release $1 coin. In the fall of 2010 I had just begun the second year of my fellowship and my days seemed to be taking on a common theme. I was tired all of the time. The fatigue I felt was different from your average fatigue. I would sleep for 12 hours and wake up and could barely open my eyes. I was never a coffee drinker, but I began drinking cup after cup of coffee just to stay awake. I also was losing a considerable amount of weight. I normally run about 175, but found myself weighing about 155 before I was diagnosed. This was because my spleen was 3 times its normal size and it was encroaching on my stomach, literally making it smaller so I could not eat a full meal.
K: What was your treatment like after the arduous diagnosis process and how do you currently manage it?
J: CML is a chronic type of leukemia that I will live with for the rest of my life, however long that may be. 15 years ago this condition was a death sentence with a life span of about 3 years, but a miracle pill that was engineered at the Oregon Health and Science University changed the course of the disease. I will take medicine for CML for the rest of my life. Every night around 8 pm I take my pill and go on with my day. It has taken me 4 years to be able to describe the management of my disease in this way. It was far more complicated when I was first diagnosed as an invincible, young, self important person. When you are threatened with extinction at the age of 26; it takes a while to understand that death is even possible. As silly as it sounds death always seems like something that happens to other people. In our society we tend to associate our physical beings and our societal beings as separate. There is "you" the person that dreams of accomplishing these amazing things, the person that is obsessed with improvement, the person that is moving up, up, and up. Then there is the person who is an organic being that can be snuffed out in an instant like the opossum you obliterate with your car on a country road. I was not in touch with the latter at all. As a young musician you need to be able to live in the art and to devote yourself to the craft and for me, having cancer did not allow that. Having cancer was a logistical nightmare. I was frequently flying back and forth from Miami to Wisconsin (where I was being treated) for blood tests, biopsies, and appointments. I spent the summers at home with my family during that time because I needed them. I suffered artistically during this time because my attention was fixated within. Even though the NWS went above and beyond for me, it was difficult to exist in a space where everyone was young, doing fun things, and advancing professionally. I never felt like doing anything fun and was far too lost inside myself to really devote anything meaningful to my craft.
K: How did this experience of illness and recovery change your perspective on a life in music?
J: Four and a half years from my diagnosis and more than two seasons removed from the NWS my life looks much different than I thought it would. I still practice a few hours a day because I like to play the tuba and enjoy having something to work at. I have had some small victories in sublist auditions and had the opportunity to sub with the Philadelphia Orchestra. I never imagined I would be working at a grocery store, though. Especially not with a masters degree and a prestigious fellowship under my belt. If I frame it in that way it sounds depressing, like I saunter around the store putting black beans on a shelf in a tardigrade fashion with a frown on my face.(Editor's note: See image above for what a tardigrade is) However, it really is not like that. I love how fast paced it is, I love that I get my 10,000 steps in a day, I love how nice my coworkers are and I love how it is totally unrelated to music. Almost every day, my chops are mine. I work on what I need to work on fundamentally and play music I like to play. I am perhaps more musically curious now than I have ever been. You have to be open to the curve balls life throws...especially the ones you have no control over.
K: What would your advice be for someone who has a friend, colleague, or teacher who has been diagnosed with cancer?
J: If you are working in a group with people of varying age levels, you will most likely deal with a colleague or two that has been diagnosed with cancer. A simple way to be there for them is to draw out from with in you an ability to empathize. Do not tell them to drink disgusting juices or start eating an all apple diet. Think more like "If I was given the diagnosis of a life threatening disease where I might lose body parts and all my hair might fall off, what would I want?". Offer to drive them to appointments or if you are close friends, babysit their children while they are at appointments. Just try to make it easier for them to logistically exist in their own life. And above all do not treat them like they are different from you. Illness and death are incredibly taboo in our society and it does not make the process of dealing with either any easier. At some point we are all going to be ill and then some day we will die. Of course it is not optimal, but it is inevitable. If you, yourself are diagnosed with a life threatening illness it is helpful to learn advanced coping skills through the help of a therapist. A book that was/is helpful to me is a course in attention training that was written by Amit Sood, head of integrative medicine at the Mayo Clinic. The book, "Train Your Brain, Engage Your Heart, Transform Your Life" helped me understand how attention and interpretation affects my ability to engage with the present moment. When you are ill, you must learn this skill regardless of the outcome of your disease. Your "fight" has the potential to negatively affect how you interpret every experience.
K: Well said- any last words of advice?
J: Get health insurance, get a physical every year, treat your body well, and listen to it. It still amazes me how long I ignored all of the clues I was dying (lol). Also, treat your friends well. I would have never made it through my time in Miami had it not been for the strong friendships I forged while I was there. Through out your life you have the opportunity to weave a web comprised of people that love and care for you, so be nice and do it. You never know when you'll need to call on them.