How Multiple Myeloma Changed My Family                          Cancer is a word that surrounds us daily. We are constantly flooded with warnings that everything is potentially cancerous. News articles continuously tell us of a constant flood of daily products, foods, household appliances, and so much more that increase our risks of different types of cancer.  Studying biochemistry in college, I learned and studied cancer in great detail. Never did I imagine, however, that one day, it would be so intimately a part of my everyday life.               During the spring of 2014, as a Junior at Seattle Pacific University, I was lucky enough to travel to Peru to learn more about the dental field and work with Peruvian dentists to serve rural communities. It was my first big trip, and I was more excited than I had ever been in a long time. The trip itself was incredible. I experienced a completely different culture, and yet, the places I explored seemed at once very familiar to me, conjuring up memories of my hometown in Mexico. Although I loved the trip, I was excited to come home. I could not wait to share my experiences with my family. More than anything, I could not wait to hug them.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     I remember coming home to the States hardly able to contain my joy to see my family, but instantly I realized something was different. I walked in and my mom’s friend was in the kitchen doing dishes, which seemed extremely odd; my mother would never let anyone do dishes or be in “her” kitchen. My mother was sitting on the couch, greeting me with the most beautiful smile, but I noticed she was also wearing a black back brace. Very odd.  I knelt in front of her and held her hands in mine. There was something really strange and deeply unsettling about seeing my mother sitting on the couch in her back brace, instead of walking around in her usual high heels. Despite what my brain was telling me, I managed to remain calm, hoping there was a reasonable explanation for the weirdness I was feeling.               My brother was in the living room, and he came over and hugged me. He told me in Spanish, “We have to be strong for Mom.” In that instant, I could no longer hold it together, and I started crying. We have all been in situations where we know we are about to receive bad news, and our minds immediately jump to the worst-case scenario. Most of the time, though, it never is as bad as it seems. My first thought was, “Mom has cancer.” At the same time, I was also hoping deep down, and had almost convinced myself, that whatever my brother was going to tell me was not as bad as cancer. My brother stuttered and said, “Mom has cancer.” In that moment, I could not do anything but sob uncontrollably. I felt the worst heartache I have ever experienced. My first thought was that my mom probably had breast cancer. I reasoned with myself, “It will be okay, based on what I know many women with breast cancer live for a very long time.” When I was finally able to choke some words out, I asked my brother what type of cancer she was diagnosed with. He told me she had “multiple myeloma.”  “Multiple what?!” I went back to hug my mom and just be with her in that moment. Although she was the one who had just been diagnosed with multiple myeloma, there she was holding me, loving me, and comforting me, like the incredibly strong and loving mother she is.               Today, I still remember that day as the worst day of my life. I went on to finish my Junior year of college. It was an extremely difficult year for me. I am very thankful, however, for my friends who made sure that I was okay at all times and kept me company. To this day, my closest friends continue to be one of my many sources of strength.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                 Immediately, my mother began her aggressive treatment to attack the myeloma, which included radiation therapy and intense chemotherapy. We began the dreaded weekly visits to the oncology center in Vancouver, WA.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                 The next couple of months after her diagnosis my mom and all of us were getting ready for the biggest day of our lives, her much anticipated bone marrow transplant. Luckily, she did not need a donor as her transplant was autologous, which means that her own stem cells would be cultivated and given right back to her. My mother is so strong; her own body saved herself and gave her another chance at life. After many rounds of chemotherapy, radiation, and physical therapy, as well as unexpected hospital visits, the big day had arrived:  March 27th, 2015.  The bone marrow transplant occurred at the Oregon Health & Science University oncology center in Portland, Oregon.  My sister had flown in from Mexico to be here with all of us. By now, it had been a whole year since her diagnosis, and I was now a senior in college getting ready to graduate.              College graduation finally arrived. I became the first person in my immediate and extended family to graduate from an American university. This was supposed to be one of the happiest days of my life, right? Although, I was extremely proud of myself, it was a bittersweet moment since my mother could not attend my graduation, as she was still recovering from her recent bone marrow transplant. My dad also could not be present as he was at home taking care of his beautiful wife. I knew that my parents were both cheering me on from Vancouver, WA, or as I like to call it “The ‘Couve”. My brother, his wife Adriana, and my uncle had traveled to Seattle to see me graduate. After the graduation ceremony I asked them to drive me to Vancouver so that I could be with my mother the same day of my college graduation. After the longest three hour car ride ever, I walked home with my cap and gown to share this moment with my parents. The recovery of her bone marrow transplant was very successful, but of course, came along with all side effects of a bone marrow transplant. The physical toll the transplant had taken on my mother did not shadow her inner strength and beauty. She is my biggest inspiration and daily I aspire to be like her.       

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                 Fast forward to this past spring 2018, and my family and I celebrated her third year of remission. My mother is one of the strongest women I have ever met. This past year has been even more exciting to see her physical strength slowly come back to her. This summer, she attended two weddings and left the house a little more for family dinners. She has even contemplated making a trip to Seattle with my dad to visit me, which is huge for her to say! I am currently working on my master’s degree and when I go home to visit, she will still make me tea to make sure that I am focused during my studies.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                 I admit that it has been an extremely difficult journey for my family and I, but there was something about this ugly and life-threatening disease that unexpectedly brought us closer together as a family. Throughout this entire process, my family and I have received so much support from other family and friends, and even hospital staff. The oncology nurses at the hospital are some of my favorite people to this day, and the doctors that I have met have been wonderful. Slowly they have become an extended part of our families. For some time, I have been wanting to return the favor and help other families who are in a similar situation as me. It is a challenging and dreaded journey, but the support makes it a bearable experience.               Joining the LiveSymile Foundation was something that happened unexpectedly and quickly. I am a big believer that when the right opportunity arises, you have to reach out and take it. The LiveSymile Foundation was one of those right and perfect opportunities for me.               I met Hakan Gem, the founder of LiveSymile, in the winter of 2018, while he was a fourth-year dental student at UW and I was working at a community health center where Hakan was assigned to do one of his clinical rotations. When the rotation ended, we friended each other on social media. A few months after, I noticed a personal post about Hakan’s mother and I was immediately touched by his extraordinary story. I also learned that he was starting a foundation to support cancer patients and their families. I wanted to learn how I could get involved and do something to represent and honor the journey my mother has been on. Hakan and I agreed to meet to go over a few of the logistics of a non-profit and how to get started. At that meeting, we both shared our stories about how cancer had influenced our families. I had to fight hard to hold back the tears when listening to his story and while sharing my own experiences. We both were on the same page; we wanted to create something beautiful to honor our mothers, in the midst of unthinkable pain.  Never did I imagine that I would walk away from that meeting with an offer to jump on board as one of the co-founders. I slept on it, thinking about the opportunity for several days. I wanted to ensure that I was the right fit to support and bring to life the visions and the values of the LiveSmyle Foundation. After mulling it over seriously, I accepted  to join LIveSmyle, and it has been the most exciting journey thus far. Hakan is a very motivated individual, and I am super excited to help bring his vision to life, while at the same time incorporating my own passion and infusing my own experience into LiveSmyle. I am beyond excited to be a part of such an amazing organization with Hakan, both of us inspired and driven to honor two amazing women who happen to be our mothers.

How Multiple Myeloma Changed My Family

            Cancer is a word that surrounds us daily. We are constantly flooded with warnings that everything is potentially cancerous. News articles continuously tell us of a constant flood of daily products, foods, household appliances, and so much more that increase our risks of different types of cancer.  Studying biochemistry in college, I learned and studied cancer in great detail. Never did I imagine, however, that one day, it would be so intimately a part of my everyday life.

      On Community Building in the Era of Division               It’s admittedly difficult to maintain an outlook of positivity if you keep up with today’s news cycle. From high profile court cases of sexual assault to the endless coverage of a narcissist president, we are inundated with news meant to provoke divisiveness and outrage.               Scroll through anyone’s Facebook feed and you can just feel the visceral disgust emanating off our screens. I’m tempted, as I’m sure you have been as well, to delete my social media accounts and turn away from this world of negativity and conflict.                But is that really the solution to this problem?               Perhaps it is. I have a number of friends who’ve happily deleted their accounts and pay little attention to the war of ideas being fought over the internet.               But perhaps it isn’t. Because doing so would close the door on one of the greatest opportunities we’ve created to build something special: online communities with the power to make positive and lasting impact on the world.               Right now, I want to press pause on the outrage machine that dominates our news feeds and tell you a story of how one such community is slowly coming together.                Back in July, as a beautiful summer was finally taking hold in Seattle, I received a Facebook message from an unlikely source.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                  The sender was Yarenni Mendoza, a colleague whom I’d met in dental school whose story shared many parallels with mine - a family stricken by cancer and a desire to do something about it.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                  Yarenni and I met after one day after work, and it immediately became clear that a synergy was afoot. For the past few months, I had been establishing the legal foundation for a non-profit organization, and I was eager to find a partner who could help me develop it. Yarenni, on the other hand, was doing everything she could to support her family as they rode the turbulent rollercoaster of cancer care. But after having experienced the instability of that ride firsthand, she wanted to find a way to help make it smoother for others.                After sharing our stories with one another, it only made sense that we combine our efforts in the arena cancer awareness and support. And just like that, the core team of LiveSmyle grew from one to two.               But two people don’t exactly constitute a thriving community. So we got to work.               The first step was to establish a donor base who would support our vision of helping families undergoing cancer treatment. And my goodness, what a treat it was when over 15 family and friends agreed to become regular donors for the LiveSmyle Foundation.                The agreement was simple: each donor would pledge $1 for every social media engagement our Facebook page generated. And in three short months, this wonderfully generous group collectively raised over $6,500!               The next step was to find a meaningful recipient for these funds. And we did exactly that when we heard the Seattle Cancer Care Alliance needed help refurbishing components of their patient housing facility in South Lake Union.                In particular, patient beds had not been replaced in quite some time, so we  purchased and donated 4 complete bed sets to the housing facility. And with gracious acceptance from the team at SCCA, our community grew just a little bigger that day.     

  

  	
       
      
         
          
             
                  
             
          

          
           
              From left to right: Yarenni Mendoza (LiveSmyle), Zara Crump (SCCA), Hakan Gem (LiveSmyle), Debbie Fraley (SCCA)  
           
          

         
      
       
    

  


                  And we’re not stopping there. We are hopeful that our next contribution will provide SCCA patients and their loved ones with fun experiences and positive memories as they visit Seattle for treatment. Two tickets to a Sounders FC match and two more tickets to the Cirque Du Soleil show “Volta” are to be raffled off in the coming days. We won’t know who will win them, but we will know that on the nights of October 8th and October 12th, four individuals whose worlds have been upended by cancer will find respite from their conditions, even if for just a couple hours.      




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  
     
    
      
         
            
            
         
      
    
       
  

 






  
  
  
                  There is one more pillar in this emerging community that I haven’t yet mentioned. And that pillar is you, reading this right now. Ultimately, it’s the online engagement from people like you that fuels this entire operation. Not only do you help raise cancer awareness with each like, comment, and/or share, but you also help us raise the funds which our donors have agreed to pledge with each engagement.                And for that we want to say thank you. Moving forward, we will keep a running tally of those who remain the most engaged with our Facebook page and reward them with small gift cards to various cafes, restaurants, and retailers. Don’t expect too much! But it’s our way of showing how much we appreciate you helping us achieve our mission.                Make no mistake, I’m well aware that the LiveSmyle Foundation is but the smallest of fishes in a vast ocean of clickbait headlines and political/social dramas vying for your attention. Maybe it’s naive of me to think that we can leverage social media for something other than powering the outrage machine.               But if you see the same potential for positive impact that I see, and feel the same pull toward a world of compassion and inclusivity that I feel, then join us.               Join us simply by liking our page or by sharing our posts. Join us by telling your friends and family about us. Join us by becoming a donor. Join us if you feel like you can share your own skills and expertise with our team of two. Someday soon, I have no doubt that our team will inevitably grow to three. And then four. How big can this get? And who will those people be?               If you have been affected by cancer in any capacity, I offer you this opportunity to channel your loss, your anger, your frustration, your grief, whatever it may be, into a vehicle for good. If you fall into this camp, you have a community ready to accept you and implement your ideas for what constitutes a better life for cancer patients and their families.                Beyond the scope of cancer awareness, I want to leave you with my final and perhaps most important request. Aspire to use the tools at your disposal (the internet, social media, etc.) not to drum up controversy or maliciously spotlight those with whom you disagree. Rather, aspire to use these tools to build communities that will withstand this era of division. It may in fact be the most effective, if not only way we leave this era behind.     

  

  	
       
      
         
          
             
                  
             
          

          
           
              The Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance in front of Mount Rainier. South Lake Union, Seattle, WA..

On Community Building in the Era of Division

             It’s admittedly difficult to maintain an outlook of positivity if you keep up with today’s news cycle. From high profile court cases of sexual assault to the endless coverage of a narcissist president, we are inundated with news meant to provoke divisiveness and outrage.

      A Bittersweet Time: The LiveSmyle Foundation               With graduation in the rear view mirror, I'm elated to have shared such a moment with my fantastic peers and all of our friends and families. I'm relieved that this long and difficult chapter is finally over. And I'm eager to tackle what lies ahead. But before embarking on the next journey, I have to take a moment and reflect on why this moment means so much to me.     



  

  


 
   
    
      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      
    
   

  
     
    
      
         
            
            
         
      
    
       
  

 


  

     
      

        
           
        

        

      

        
           
        

        

      

        
           
        

        

      
     

  




                  21 years ago, as a 5 year old boy, I watched my mom as she walked across the stage of the University of San Antonio School of Dentistry and earned her dental degree.     



  

  


 
   
    
      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      
    
   

  
     
    
      
         
            
            
         
      
    
       
  

 


  

     
      

        
           
        

        

      

        
           
        

        

      

        
           
        

        

      

        
           
        

        

      

        
           
        

        

      

        
           
        

        

      
     

  




                  That day only exists in my memory as a collection of a few, brief flashes, but I do remember feeling awestruck. I was definitely too young to understand what it all meant, but according to my grandmother whom I was sitting next to in the audience, I turned to her and said, "I'm going to be a dentist like her someday."               Of course I had no idea what I was talking about. I had no understanding of the countless hours of studying, preparation, and practice that it takes to become a dentist. And even now after having completed dental school, I still have no understanding of the added challenge that accompanies raising a young boy at the same time. Yet she believed she could do it, so she did. She was determined, independent, and fearless - qualities that I admired in her and appreciate more and more every day.               Words can't describe how deeply I miss her. At times, it's paralyzing to realize that I'll never see or speak to her again.  I wish so strongly that I could thank her for being the role model I try to emulate on a daily basis. But life often has little regard for our wishes, so what do we do? If I want to stay true to her character, there's only one thing I can do: channel the adversity of losing her as fuel to move forward and build a better world.               Today, LiveSmyle is having a graduation of its own. What was once a simple social media page is now the  LiveSmyle Foundation .                So what does that mean?                LiveSmyle will operate as it always has. I'll continue making weekly posts about important cancer news, facts, stats, historical figures, etc. But starting today, every time a post receives an engagement (like, comment, or share), a wonderfully generous group of donors will each put forth $1 in support of the foundation.                Where will the money go?                LiveSmyle is partnering with the Seattle Cancer Care Alliance to bring some light into the lives of cancer patients. Many patients of the SCCA fly from all over the region to receive their treatment here, and for many of those folks, Seattle will only be the place where they got chemo, radiation, and/or surgery.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                  The LiveSmyle Foundation is going to change that. Donations will be used to purchase tickets to events and experiences around Seattle at the request of patients and their families. Whether it's visiting popular tourist sites, attending sporting events, visiting a museum, enjoying a nice dinner at a local restaurant, or anything that we can make happen, patients of the SCCA will be given the opportunity to enjoy Seattle before, during, or after their treatments.               Let's use social media to do something good. Every like, comment, and share of LiveSmyle's content will not only raise cancer awareness, but it will also raise funds to help patients and their families through tough times.  With your help, we'll make it happen!

A Bittersweet Time: The LiveSmyle Foundation

With graduation in the rear view mirror, I'm elated to have shared this moment with my fantastic peers and all of our friends and families. I'm relieved that this long and difficult chapter is finally over. And I'm eager to tackle what lies ahead. But before embarking on the next journey, I have to take a moment and reflect on why this moment means so much to me.

      Why the War on Cancer is Wrong               "She battled cancer for about three and a half years and lost her fight in June, 2015." When I first heard myself say these words in response to how long my mother had been "fighting" cancer, it just didn't feel right. But throughout the entire process, from diagnosis to death, this was the metaphor surrounding her illness. Our friends, family, doctors, and researchers -  literally everyone  was engaged in a battle for the ages. But how did we come to think of cancer in this way? And is it possible that it's actually doing more harm than good?  1943, the War Begins               On the heals of World War II, the war on cancer escalated quickly and quietly. A self-made, powerful businesswoman by the name Mary Woodard Lasker was a rising socialite in the bustling scene of New York City. Prior to the 40s, Lasker had been a wildly successful saleswoman and entrepreneur who would eventually be described as having "legendary social and political energy."     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                  Following the death of her mother who had brushes with both cancer and heart disease, Lasker redirected her professional efforts from the business world to public health activism. Her first step was to get a pulse on the landscape of cancer research, so she visited the American Cancer Society (then called the American Society for the Control of Cancer) in 1943, and what she found was disappointing.               "The visit left her cold. The society, a professional organization of doctors and scientists, was self-contained and moribund, an ossifying Manhattan social club. Of its small annual budget of about $250,000, it spent an even smaller smattering on research programs (Emperor of All Maladies)."                So Lasker got to work, upending the entire system in her signature way.               In four short years, she and her team transformed the fledging society by replacing the leadership, rewriting the bylaws and constitution, and fundraising an incredible twelve million dollars - a near 5000% boost to their budget.               How did she do it?               By deploying one of the most powerful metaphors that we have at our disposal: war. She shaped the public's perception of cancer from a disease that people were too frightened to talk about, to an enemy that needed ruthless and systematic eradication. She not only rallied doctors and scientists, but also celebrities and philanthropists. She took to the radio waves and magazines and newspapers to raise awareness around this silent and devious enemy. This was a war she couldn't fight alone, and her previous experience as a businesswoman gave her all the skills she needed to rally everyone to her cause.               Most people would agree that we are an innately tribalistic species, and if we detect a threat to our people, we have an extraordinary capacity to collectively neutralize that threat. And herein lies the troublesome double-edged sword of "fighting" cancer. There's no doubting the immensely positive impact that Lasker had on cancer awareness, advocacy, and research by appealing to this side of humanity. Her efforts would culminate in the signing of the 1971 National Cancer Act, which would pledge more money and resources toward cancer research and treatment than ever before. And the progress that we have made as a result is unbelievable.     



  

  


 
   
    
      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      

        
          
             
              
                    
              

              
                
              
                
             
          
          
        

        

        

      
    
   

  
     
    
      
         
            
            
         
      
    
       
  

 


  

     
      

        
           
        

        

      

        
           
        

        

      

        
           
        

        

      
     

  




                  But what was the tradeoff that we made when we decided to go to war? And how can we detect when the impact of this mentality is no longer beneficial?                By listening to the "soldiers" we send into battle.  The Price for Glory               Everybody loves an underdog who wins. Whether it's David toppling Goliath, or the proverbial Cinderella team dancing their way through the March Madness tournament. You see where I'm going with this - we all want to view our friends and family who are diagnosed with cancer in the same light. We want them to embody the spirit of a warrior who will fight against and beat all odds. I know, because this is how I wanted to view my mother as she went through treatment.                But it was a mistake and in hindsight, I wish I hadn't. Because the reality that we must face is that we're not all warriors.  And having cancer is not a battle that we should force people to fight.                Why?               Because "fighting" cancer shifts the burden of victory, or worse, the guilt of loss, squarely on the shoulders of the patient. Consider what is implicated when the cancer is out of control and can no longer be treated.  Would it have been possible to win if only the patient fought harder?  And while at first the metaphor may be inspiring, it falls apart in the throes of chemotherapy, radiation, and surgery.               Today's standard for cancer therapy is a much crueler world than many of us want to acknowledge. Sure, we all have an abstract sense of its physical challenges - the nausea, the hair loss, the energy drain, etc. But what most of us lack is a fundamental understanding of how it erodes our psyche - the isolation, the depression, the bitter confrontation with one's own mortality.                In the midst of this physical and mental trial, our loved ones are urged to remain strong, to never give up, to keep fighting. Making these suggestions is a blatant, and often completely unintentional disregard for the enormity of the existential task that is surviving cancer.                So does this mean we should preach the opposite message? To give up immediately in the face of a terminal diagnosis?                Absolutely not.  A New Framework               What I am advocating for is a collective shift in how we talk about cancer. If we move past this metaphorical war and begin to understand how cancer actually impacts the human condition, not only will we be more successful in how we support our loved ones as they go through treatment, but we will be more successful in how we treat cancer itself.                Let me explain.               When we replace words like "battle" and "fight" with "diagnosis" and "treatment," we paint a more realistic picture of the disease. And it creates a more approachable environment for those having to deal with it. So rather than asking, "how long have you been battling cancer?" a better question might be, "how long ago were you diagnosed?" And if you want to show your support to a friend or a loved one, saying "I'm here for you through your treatment," might be a better option than "keep on fighting, I know you can win." Take a look at cancer survivor and writer  Xeni Jardin's opinion  on this.               Changing our rhetoric also forces us to understand cancer in its truest form. What does it mean to be diagnosed? For starters, cancer is the term we use to describes a set of diseases that share the common characteristic of abnormal cellular growth. Diagnosis is confirmed under a microscope when cells exhibit very distinct patterns that suggest cancerous transformation. So why do the current treatments have such devastating side effects? Cancer cells grow rapidly and have the potential to spread and invade to other parts of the body. Our classical chemotherapeutics target all rapidly dividing cells including those found in your hair follicles and digestive tract, hence the dramatic hair loss and nausea.               From here, we can ask more nuanced questions: how does the next generation of therapy promise better efficacy with fewer side effects? Right now, there is a colossal effort in the research community to find out exactly how cancer cells differ from healthy cells  at the molecular level . Given that there are probably more molecules in a single cell than there are stars in the Milky Way galaxy, you can appreciate the grand scale of this challenge. But with technological advancements in areas such as immunology, big data, and even machine learning, the problem is slowly being solved. And your ability to recognize which efforts are the most promising is a direct function of your understanding of cancer. Which is why you shouldn't resort to metaphorical thinking, but stick to more accurate descriptors that force you to comprehend what this disease really is. This gives you the added benefit of knowing how to best prevent cancer in your own body.        </iframe>" data-provider-name="YouTube"                      Today marks the beginning of a new year and an opportunity for all of us to start something new. Let 2018 be the year you transform your thinking about cancer. Challenge yourself to use more accurate, non-metaphorical words when referring to this disease. And with this new framework, let us enhance our support and progress toward a world free of cancer.  Further Reading    Illness as Metaphor - Susan Sontag    Emperor of All Maladies - Siddhartha Mukherjee

Why the War on Cancer is Wrong

             "She battled cancer for about three and a half years and lost her fight in June, 2015." When I first heard myself say these words in response to how long my mother had been "fighting" cancer, it just didn't feel right. But throughout the entire process, from diagnosis to death, this was the metaphor surrounding her illness. Our friends, family, doctors, and researchers - literally everyone was engaged in a battle for the ages. But how did we come to think of cancer in this way? And is it possible that it's actually doing more harm than good?

      How Billions are Wasted on Cancer Drugs                As an aspiring healthcare provider, this is perhaps the hardest pill to swallow (no pun intended). Our capitalist economy has unquestionably contributed to the immense rate of technological and scientific progress over the years. Everywhere you turn a new device, innovation, or application is springing up to make our lives easier. But is this the correct method to solve the indisputable healthcare crisis that has enveloped the United States? Or more importantly, is it moral to profit from those who are suffering from sickness? It's a simple question that reveals the complexity underlying the US biotech industry.  Drug Companies Are Businesses                It's been shown over and over again - America has the highest healthcare costs per capita and the some of the poorest health outcomes in the developed world. And the rising cost of pharmaceuticals only exacerbates this problem for many families.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   Take Lauren Baumann, a single mother who relies on the drug Gleevec to manage her chronic myeloid leukemia -  a type blood cancer. Her co-pay (the amount of money she pays after insurance kicks in) is $2,200 per month. Even with a full-time job, she has been forced into bankruptcy in order to pay for her medication. Once upon a time, this drug only cost a third of what it costs today. How did this happen?        </iframe>" data-provider-name="YouTube"                       Gleevec is manufactured by the pharmaceutical giant Novartis which rakes in $5 billion a year from this drug. In 2001, Gleevec cost $2,600 a month for patients. Now, it's around $9,200 per month. The company justifies this increase by stating that the money is going toward the research and development of new drugs. A noble effort for sure, but one that's difficult to fully believe given the  $12 million compensation of Novartis CEO Joseph Jimenez in 2015 alone .                Let's look into one fascinating reason why cancer drug prices are skyrocketing.  It's All About Serving Size                 Herceptin  is an effective targeted therapy developed by Genentech and administered via blood infusion at hospitals for the treatment of breast cancer, the leading cause of female cancer mortality. Prior to 2017, the drug would come in a 440 milligram shareable vial which could be distributed between multiple patients as needed.                In May of this year, Genentech announced that it would be discontinuing the larger, shareable vial for a smaller,150 milligram single-use vial. It may not be obvious right away, but this change resulted in a huge money drain for patients and an equally large profit margin for Genentech.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   The amount of Herceptin a patient needs is determined by their bodyweight. One hospital administrator in California calculated that the average patient needed about 340 milligrams per infusion based on their bodyweight. But since the vials are single-use and come in 150 milligram increments, the average patient would need 3 vials (450 milligrams total) and waste approximately 110 milligrams per infusion. At $9 per milligram, that's roughly $1,000 wasted per infusion! And each patient needs multiple infusions every week for up 64 weeks. The amount of money wasted here is sickening. And the unused drugs remaining in the vials can't be reused, so they're discarded. But the patient gets billed all the same as if they used every drop.                 And it's not just cancer drugs that are wasted in droves , even the way that generic eyedrops are packaged make us use more than we need.                Once again, justification was provided by Genentech for their use of smaller vials. The change in vial size would help their worldwide supply chain become more reliable and thus distribute the life-saving medication more easily. Even if that were true, Genentech is grossly overlooking the financial burden they are placing on these patients and enjoying greater profits as a result. You would think that regulatory agencies like the FDA might have something to say about this. But they are tasked with the safety and efficacy of these drugs, not the cost or method of distribution. So this behavior continues unchecked.   The Solution Is Simple, Changing Your Philosophy Is Not                Studies have demonstrated how wasteful these single-use vials are among other senseless practices of pharmaceutical companies.  A 2016 publication by Dr. Peter B. Bach , a physician at the Memorial Sloan-Setting Cancer Center, concluded that 10% of the top 20 cancer drugs were thrown to waste in 2016. How much did those wasted drugs cost for patients and their insurance companies?                 $1.8 billion.                 Yes, with a B. In a single year.        </iframe>" data-provider-name="YouTube"                       Reverting back to shareable vials would almost immediately fix this problem. So why haven't we done it? Because the philosophy driving these giant pharmaceutical corporations prevents them from doing so. Those $1.8 billion aren't wasted for Genetech, Novartis, and the like. For them, this is a huge positive. They are selling more drugs and making more money, which is excellent news for their executives and shareholders.                And herein lies the crux of the entire issue.                Who should the companies that operate in the field of healthcare be accountable to? Their CEO's and top ranking officers? Their shareholders? Or the people who need their product to stay alive?                In today's world, our insurance companies, pharmaceutical companies, and many treatment centers hold their bottom lines on a higher a pedestal than their patients. Of course, without money these organizations couldn't provide healthcare. But at some point a line must be drawn to prevent the entire field of healthcare from slipping into a landscape that is dominated by capitalist forces.  A 2004 publication by a Bay Area news organization  reported that the top 5 paid executives at Genentech were compensated a total of around $63 million. The line, in my humble opinion, was crossed long ago.                A company decides it needs to improve the efficiency of its supply chain, but as result, throws thousands of patients into insurmountable economic distress. This simply is not fair. This simply is not just. Healthcare giants must transform their philosophies to protect these vulnerable populations. It's not a question of profit versus loss, it's a question of right versus wrong.         </iframe>" data-provider-name="YouTube"

How Billions are Wasted on Cancer Drugs

              As an aspiring healthcare provider, this is perhaps the hardest pill to swallow (no pun intended). Our capitalist economy has unquestionably contributed to the immense rate of technological and scientific progress over the years. Everywhere you turn a new device, innovation, or application is springing up to make our lives easier. But is this the correct method to solve the indisputable healthcare crisis that has enveloped the United States? Or more importantly, is it moral to profit from those who are suffering from sickness? It's a simple question that reveals the complexity underlying the US biotech industry.

         What It was like to Work in a Cancer Lab                Over the last three months, I had the incredible opportunity to work full time at The Fred Hutchinson Cancer Research Center in Seattle. Opened in 1975, the Hutch is part of a network of NCI-designated cancer centers around the country. In it's brief 42 year history, our center has produced three Nobel laureates, a consortium with UW Medicine and Seattle Children's called The Seattle Cancer Alliance, and countless biomedical discoveries and innovations. This is my account as a fledging dental student/scientist of what it was like to peek behind the grand curtain of cancer research right here in my home town.                 The monumental scale of their effort is immediately apparent when you step on the 15-acre, 13-building, 1.5 million square foot campus located on the south end of Lake Union. The red brick exterior gives a sense of timeless tradition which contrasts nicely with the pristine corridors decorated by scientific posters and awards. There's a sense that important work is being done here, and as an outsider looking in on day one, I'd be lying if I said I didn't feel a bit intimidated.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   But that feeling quickly subsided as I met my fellow co-workers in the lab. Friendly, passionate, and exceedingly intelligent, they welcomed me in despite the growing size of their team. Our leader, a head and neck cancer surgeon at UW and principal investigator (PI) at the Hutch, employs a team of 2 post-doctoral fellows, 2 ENT residents, a lab technician, and for a brief period of time, a dental student eager to get started in the field of cancer research.                The focus of his research lab is head and neck cancer. In particular, the team concentrates on the most common form of head and neck cancer known as squamous cell carcinoma (SCC). These cancers typically arise in the tissues that line the inside of the mouth, nose, and/or throat.                 A great majority of SCCs carry a mutation in a gene called TP53 which encodes for a crucial tumor suppressor protein. As it turns out, TP53 mutated SCCs are especially vulnerable to a targeted therapy called AZD1775 - a protein (WEE-1) kinase inhibitor. It essentially operates by blocking the action of a key enzyme that the cancer cell relies on. In combination, the TP53 mutation and targeted therapy render the cell too unstable to survive. Our PI discovered this cancer cell vulnerability back in 2014, and he is currently completing a promising phase I clinical trial using that drug.                My role over the summer was to assist a post-doctoral fellow in the lab as his focus was on human papilloma virus (HPV) related SCC. It's becoming more and more apparent that a rise in HPV infections is leading to a rise in oral cancer rates, so research in this field is really beginning to pick up.                The virus induces cancer by inserting its own genes into the human genome. E6 and E7 are two specific oncogenes that these viruses insert into their host DNA. From there, the host's own DNA replication mechanism transcribes the E6 and E7 oncogenes producing oncoproteins. These oncoproteins go on to inactivate key tumor suppressor genes like TP53 and RB, effectively removing any braking mechanism the human cell may use to slow it's own growth. From the virus's standpoint, this is hugely beneficial. The more the host cell replicates, the more it gets to replicate. From our standpoint, this can obviously lead to devastating outcomes such as cancer, which is why it's so crucial that we develop a deeper understanding of how viral infections impact our biology.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   Transitioning from the clinic to the lab was certainly a change of pace. In the clinic you get a sense that you're always battling the clock. Between waiting for faculty approval, constantly checking patient comfort, or collecting all your supplies and instruments for the procedure, you feel lucky on days that you get a full hour for lunch. It can feel like chaos at times, which is not necessarily what you want to hear from the person wielding sharp objects around your face.                But in the lab, the setting is much calmer. People tend to set their own hours and work when they want to. I saw my workday slowly shift from the usual 7:30AM - 4:00PM routine to a 9:30AM - 6PM routine.                Workflow in a lab setting is also very different from the clinic. First off, the person-to-person interaction is no longer there, and I have to admit it's something that I missed far more than I anticipated. The main subject of your labor no longer requires communication, because the main subject of your labor is now a Petri dish or a test tube. The energy and pace of clinic was definitely an absence that I felt.                 But there is a certain zen-like focus that this setting lends itself well to. I must admit that I enjoyed the sense of seclusion and independence that I didn't necessarily have in the clinic. In the lab, you can throw in your earbuds and work away in the cell culture room without having to report to anyone - and that can be pretty nice on days when you're feeling antisocial.                Overall, the experience opened my eyes to the rigor that the scientific process demands. Every single experiment or reaction is repeated at least 3 times, often more, to confirm the validity of any one result. Sometimes you spend an entire day setting up a reaction only to have it fail because you accidentally skipped step 2 earlier that morning. Sometimes you do everything absolutely right and get results that make no sense, because well, that's science.                But there are those rare moments when you look over your data for the first time and discover something interesting. Maybe it answers the question that you've been addressing all along, maybe it raises a new one. That's the most exciting part about being a scientist. You are literally standing on the frontier of human knowledge and peering into the vast unknown. If you're lucky, you find yourself in the unique position to advance that frontier even if it's just by a baby step. Over time, those baby steps culminate into what we see today: an explosion of information about the universe around us, and most importantly, about ourselves. What's incredible is how we can use that information to improve the quality of human life. But even without that, the act of discovery is just plain cool.                  As the great scientist Carl Sagan once said, "We are a way for the cosmos to know itself."

What It was like to Work in a Cancer Lab

              Over the last three months, I had the incredible opportunity to work full time at The Fred Hutchinson Cancer Research Center in Seattle. Opened in 1975, the Hutch is part of a network of NCI-designated cancer centers around the country. In it's brief 42 year history, our center has produced three Nobel laureates, a consortium with UW Medicine and Seattle Children's called The Seattle Cancer Alliance, and countless biomedical discoveries and innovations. This is my account as a fledging dental student/scientist of what it was like to peek behind the grand curtain of cancer research right here in my home town.

      A Deep Dive into Targeted Therapy                  If you take a cursory glance at the headlines regarding cancer research today, you'll see the word  immunotherapy  an inordinate number of times. It's the hottest story in cancer research right now. But is it the only one? The answer is no. There's another field that holds just as much promise and is being developed just as rigorously, but its impact is overshadowed by the hype surrounding immunotherapy. This month, we'll set aside the hype and focus our light on the fascinating landscape of targeted therapy - an equally capable and yet often overlooked field of cutting edge cancer research.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     A Moving Target                  What exactly is the target in targeted therapy? Put simply, the target refers to critical molecules or enzymes that cancer cells rely on to survive. The idea behind targeted therapy is relatively simple to grasp: if we can eliminate the critical molecules that cancer relies on, we can eliminate cancer itself. But like many things in biology and in life, this is much easier said than done.                  Technically, targeted therapy is a form chemotherapy, which is a systemic treatment for cancer using oral or IV medication. But it's different than what most people think when they think of conventional chemotherapy. We often associate chemo with its unmistakable side effects: severe nausea, repetitive vomiting, generalized hair loss, etc. But this actually refers to a class of chemo known as cytotoxic chemotherapy. In general, these drugs kill rapidly growing cells in a non-specific way. Great, since the very definition of cancer is uncontrolled cell growth. But not so great when these drugs kill rapidly growing cells that are non-cancerous - like the ones lining your bone marrow, GI-tract, and hair follicles.                   Conventional chemotherapy has been around since the mid-1950s, and while we've seen refinements to cytotoxic drugs, their side effects and lasting damage to the body leave much to be desired. Targeted therapy seeks to eliminate these side effects. We want to move away from damaging healthy cells and hone our therapeutic strikes on cancer cells exclusively. To do this, we need to understand how cancer cells are different from healthy cells on a whole new level. The molecular level to be precise. And the arena in which these differences are most apparent is in the cell cycle. Let's have ourselves a little look.        </iframe>" data-provider-name="YouTube"         The Cell Cycle Explained                  To understand how most chemotherapies work, you need to understand the cell cycle. This is the natural life cycle of our cells, and it results in DNA replication and cell division.        </iframe>" data-provider-name="YouTube"                         The cycle is broken into four major phases: G1 phase, S phase, G2 phase, and Mitosis (that annoying thing you had to memorize back in AP Bio). Let's break it down.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                    G1 Phase  - This is the initial growth phase of a cell that has committed itself to replication and division. During G1, metabolic activity within the cell surges. The protein supply chain ramps up by increasing DNA transcription (conversion of DNA to RNA) and translation (conversion of RNA to proteins). These proteins contribute to increase in metabolic activity. Cell organelles like the mitochondria and ribosomes are duplicated over and over so that there are enough for two independent cells. And most obviously, the cell significantly grows in size to accommodate for these extra components.                   S phase  - This is the phase during which the entire DNA is replicated within the cell. Protein and organelle manufacturing slows down so that the blueprint (i.e. the DNA) can be copied with high fidelity. Remember biology 101: copying errors in DNA replication are mutations, and while most mutations can go unnoticed, the most severe ones can lead to horrible diseases, like cancer. So needless to say, this phase is pretty important and the cell knows it.                   G2 Phase  - This is the second growth phase of the cell, and it immediately precedes cell division. As such, much of this phase is dedicated to preparing for division by another round protein manufacturing, spindle formation, and DNA quality control. Once the cell is prepped and it's ready for division, we move into Mitosis.                 Mitosis  - This is final step of the cell cycle where division actually takes place. It also happens to be the one that most biology students are very familiar with. Remember the sub-divisions of Mitosis? Prophase, Metaphase, Anaphase, Telophase? My college professor had a great acronym to help us remember these sub-divisions: PMAT or Pour Me Another Tequila.   #nerdjokes.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Okay so now that we're experts in the cell cycle, how do we relate it back to cancer? Well, in between some of these phases are critical checkpoints that are vital to healthy cell division. In particular, the G1/S checkpoint and the G2/M checkpoint are the most significant.                   G1/S Checkpoint  - Before proceeding to S phase for DNA replication, the cell needs to ensure that it is truly ready for the task. If there's insufficient growth during G1, the cell enters a quiescent stage known as G0 and replication is put off for another time. The G1/S checkpoint is also significant because once it's passed, the cell is irreversibly committed to division or death.                   G2/M Checkpoint  - This is the final check before the cell enters mitosis and actually divides. A critically important step in the G2/M checkpoint is the proofreading of replicated DNA to ensure no major errors or mutations have occurred. If the cell detects any irregularity in the DNA, it will steer away from mitosis and begin the process of apoptosis, otherwise known as programmed cell death. It's a built in protection to prevent abhorrent cells from dividing - a defensive harakiri, if you will.        </iframe>" data-provider-name="YouTube"                         If these checkpoints are not obeyed and the cell flies through them during the cycle, cancer is a very likely and common outcome. The only reason that cells actually stop for these checkpoints is because specific regulatory molecules force them to. Once such molecule, probably the most studied in the history of cancer research, is the one and only p53.                   p53 is a central figure throughout the cell cycle. Its responsibilities include stopping cells at their appropriate checkpoints, activating DNA repair pathways if it detects damage, initiating apoptosis if necessary, and much more. It's rightly been referred by many as the guardian of the genome.                  In so many cancers, we find that the genes encoding p53 have been mutated. For example, we know that around 62% of head and neck cancers harbor a mutation in p53. That's a huge percentage! It speaks to the importance of this molecule as a tumor suppressor.                   So how can we leverage our knowledge of these mutations to develop targeted therapies? It begins by understanding that cancer cells behave in predictable ways. We just have to know where to look.  Hello Cancer, This is an Intervention                  Imagine you're a cancer cell. You have a p53 mutation, so as you speed through the cell cycle, you don't care about stopping for checkpoints. While this may serve to your advantage at first, it invariably leads to your own destruction.                   Why?                  Because even cancer cells need to stop and make sure their internal processes are running correctly. If you keep blowing past the checkpoints and accumulate more mutations in other vital genes, you won't survive through many more cycles. So what do you do? You rely more heavily on other molecules similar to p53 to protect your mutated version of DNA. You do this by upregulating - i.e. producing more - molecules such as pRb, WEE1, or VEGF to name a few.                   And herein lies the beauty of targeted therapy. We can target these molecules that cancer cells rely on to survive, and we can do this with such precision that we spare healthy cells in the process. So in an ideal world, targeted therapy promises to eliminate cancer by exposing and exploiting its unique dependencies.   To Infinity and Beyond                  To be clear once again, this is much easier said than done. Each tumor has its own genomic profile and therefore its own pattern of molecular expression. Even cells found within the same tumor have different mutations and proteins driving their growth. So even if you're able to target one tumor successfully, that doesn't guarantee that you'll be able to target the next one in the same way.                  So where does this leave us?                  Right now, thousands upon thousands of genes, proteins, and drugs are being investigated for their respective roles in the cell cycle. And this research is being translated into tangible results. The FDA approved the first targeted therapy, tamoxifen, for HER2+ breast cancer back in 1977. Since then, our understanding of cancer genome profiles, tumor biomarkers, and molecular expression has evolved to the point that we now have hundreds of targeted therapies on the market. And there are literally thousands of clinical trials going on right now to advance the efficacy of these targeted drugs.                   This is great news, obviously, but it raises a concern in my mind. Given the complexity of the cell cycle and the sheer number of potential targets, we are generating an overwhelming library of data and information. So much so that even the best clinicians are hard pressed to keep up with the latest developments. Paradoxically, this means that cancer patients who would be great candidates for new drugs may miss out because there are simply too many options for doctors to keep track.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Because of this problem, I predict that a couple of novel solutions will rise. I believe medicine will soon deploy machine learning and artificial intelligence to connect patients to appropriate therapies. Imagine feeding a biopsy sample to an "intelligent" diagnostic device that can detect the entire mutational landscape of the specimen. From there, the unique set of proteins and molecules that the cancer relies on would be identified, and an algorithm could work out which drug or drug combinations would be most efficacious for that patient.                   Of course, this still doesn't solve the problem of the genetic and proteomic heterogeneity that we observe even within the same tumors. In other words, a biopsy from one area of the tumor may spit out different results from a biopsy taken from another area of the tumor. To solve this, we'd truly need a revolutionary solution.                  I can imagine a day that this is solved by synthetic nanorobotics. Swarms of tiny, intelligent machinery floating through our circulatory system would constantly survey our body for cancer. If one detects an abnormality, it reports the finding to the cloud and generates a report for the best course of action. These nanobots could even be loaded with the drug of choice and deposit it in exactly the right place. Heck, we may not even needs drugs at that point - the bots may be able to fix or eliminate the cancer cells themselves.        </iframe>" data-provider-name="YouTube"                         While it is fun to envision such a future, these examples still remain under the purview of science fiction. But perhaps not for long. In any case, one thing remains clear: medical scientists must continue to generate this data if we ever hope to make that future a reality. A reality that is free of cancer. That's the one I want to live in.   

A Deep Dive into Targeted Therapy

              If you take a cursory glance at the headlines regarding cancer research today, you'll see the word immunotherapy an inordinate number of times. It's the hottest story in cancer research right now. But is it the only one? The answer is no. There's another field that holds just as much promise and is being developed just as rigorously, but its impact is overshadowed by the hype surrounding immunotherapy. This month, we'll set aside the hype and focus our light on the fascinating landscape of targeted therapy - an equally capable and yet often overlooked field of cutting edge cancer research.

      The Inextricable Link Between Environment and Cancer                  In the spring of 2010, the US President's Cancer Panel released a 200-page report detailing the relationship between environment and cancer. Their findings? Shocking. Nearly 80,000 chemicals are approved for daily use by the American public. And yet only a few hundred of those chemicals have been tested for safety, meaning the vast majority of them are largely unstudied and their health consequences poorly understood. 1.5 million Americans would be diagnosed with some form of cancer in 2010, and over 550,000 would lose their lives.                  That's greater than the total number of American casualties suffered during World War I. And World War II. Combined.                   Now here's the riddle: what fraction of those diagnoses and deaths are linked to environmental exposures? And here's the unsettling answer: we simply don't know.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     How can this be? Has our government become complacent in their duty to protect their citizens? Or have we the citizens fallen asleep at the wheel, no longer concerned about how our food or products are manufactured? Or is there a deeper, more insidious reason underlying our refusal to address this hugely significant problem?                   Let me tell you the story of environment and cancer.  Regulations and Research on Today's Chemicals                Taken directly from the Cancer Panel's report: "The prevailing regulatory approach in the United States is  reactionary  rather than  precautionary ."                That is, our system to demonstrate the safety of new chemicals and products is, for lack of a better phrase, completely backwards. When a new chemical enters the US market, several agencies can be responsible for approving its safety. I'm sure you're familiar with some of these agencies like the FDA, EPA, OSHA, etc. But rather than require an incontrovertible demonstration of a new chemical's safety, these agencies will allow chemicals to enter the market as long as they meet a minimum baseline and follow them up only if obvious public health problems arise.                Is it me or does that approach sound backwards to you too?     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   I can hear the anti-regulation sentiment grumbling already. "This is the nature of the free market," one might argue, "we introduce new products with minimal government intervention, and if the product is unworthy or unsafe, the market will correct for itself without the need of strict regulation."                And most of the time, I might agree with this line of thinking. But not when the consequences of lax regulation come at the expense of human health. To me, the argument for prioritizing free market over the status of our health holds no legitimate ground.                 The heart of this issue lies in determining who bears the burden of proof. Should the industries that introduce new chemicals prove to us that their product is safe? Or should we shoulder that responsibility by consuming those products and waiting to see what happens? It seems only logical that the producers of these chemicals should be held responsible for proving their product's safety.        

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   So with these points in mind, what do our environmental cancer researchers have to say about this? You may have to strain your ears, because there aren't too many of them around. Of the $4.83 billion NCI budget, only 14% of it was allocated for environmental and epidemiological research in 2008, and that fraction hasn't increased by much in the present day. But even that is enough to paint a compelling picture of how environmental factors may increase cancer risk. Many substances that we release into the world can alter hormone production and function, induce DNA damage and inflammation, and modulate gene suppression and overexpression. All of which is to say that we understand, at least to some degree, the mechanisms behind environmental exposure and the development of cancer.                 So why aren't we doing something about it?                We'll dive deeper into that question later in this piece, but one of the basic answers points us back to our reactionary tendencies when it comes to industrial regulation and medical research. Hold onto this thought for a minute.    What's up with Nuclear?                Let's briefly address the dramatic question of how nuclear meltdowns may affect cancer risk. Unsurprisingly, there are mixed findings associated with the three major meltdowns at Three Mile Island, Chernobyl, and Fukushima.                Let's take a look into one of these events: Fukushima.                On March 11, 2011, the most powerful earthquake to shake Japan clocks in at a magnitude of 9.0 and lasts 6 minutes just off the coast of Sendai. 50 minutes later, a 50 foot tsunami floods the city of Fukushima which is about 35 miles inland. At the Fukushima Daiichi Nuclear Power Plant, the three reactors in operation shut down automatically in response to the quake. However, when the tsunami reaches the city, the waves easily surpass the 20 foot seawalls and incapacitate the site's emergency generators. Without power, the pumps responsible for cooling the reactors begin to fail which eventually leads to the meltdown of all three dormant cores. Over the next few days, hydrogen leaks result in multiple air-chemical explosions which contribute to the release of radioactive material into the area. The response and evacuations were quick, but were they enough?        
                      Using the "linear no-threshold" model for radiation exposure, the World Health Organization estimated 130-640 cancer deaths that would come as a direct result of the accident. How has that estimate held up so far?                 For starters, it's still too early to tell since a relatively short time has passed, at least in the context of cancer development. But the region of Fukushima was going to be proactive, so they launched an extraordinary thyroid screening program for children and teens. The thyroid, located just under your Adam's apple, regulates a number of metabolic hormones and is especially vulnerable to radiation induced cancer. The initial reports revealed a surprising number of abnormalities - almost 50% of the children had solid nodules or fluid filled cysts on their thyroids. An environmental epidemiologist grabbed headlines when he reported a 30-fold increase in the number of childhood cancer rates in Fukushima.                 But many scientists were quick to criticize this finding. The level of thyroid screening in Fukushima was unparalleled, and a spike in abnormal findings is expected given the heightened attention to detail. This highlights yet another challenge in separating signal from noise when it comes to drawing conclusions between environment and cancer. The number of variables to account for is staggering. But this didn't stop the screenings and the research on their effectiveness from happening, nor should it. Even if there are an unexpected number of thyroid abnormalities, we can still learn from the data if it is interpreted correctly. And that seems to be the direction that scientists and doctors are heading. They are redefining what normal thyroids in children look and feel like in medical examinations, and are thus developing a better understanding of health and disease.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   The only issue is the degree to which these screenings may actually have a negative impact on the children and their families. Detecting a thyroid abnormality in the wake of the Fukushima disaster incites great anxiety. Further tests to confirm or deny the presence of cancer can be rather invasive. And treatment, which includes the surgical removal of the thyroid, has been called into question as to whether or not it's the safest medical practice.                So do we villainize the nuclear industry for repeatedly failing to prevent meltdowns throughout the years? Well, maybe we hold them more accountable through better policy making and regulation, but let's also be careful not to paint the entire industry with a single broad brush. Safer practices and technological developments in this arena may in fact play a huge role in mitigating climate change and cancer risk in the very near future.        
        Upstream Versus Downstream Medicine                Okay, let's get back to that idea of reactionary versus precautionary regulation. Except now, let's apply that attitude to the world of medicine and how we treat illness. What do you see? Well, the American healthcare system of course!                Medical sociologists have long criticized our collective approach to healthcare which they have labelled as "downstream medicine." Let's use a metaphor.                Imagine standing on the banks of a river when you suddenly notice a person struggling to stay afloat as they drift down the current. Being the courageous and altruistic individual that you are, you jump in to save that person's life. After an exhausting and heroic effort, you pull the person onto land and out of harm's way. But when you look up, you see two more people drifting down and struggling for their lives. Once again, you gather yourself and jump in. Surely, this must be it, you think. But after pulling them out and expending nearly all of your energy, you look up to see a horrifying picture. Hundreds, if not thousands of people are now drifting down the river, and there's no possible way you can save them all. In this metaphor you, my friend, represent the great majority of medical doctors in the US. In your heart, all you want is to help those in need, but you are stretched way too thin as the safety net at the bottom of this river.         
                      So, you take a step back and ask yourself, "why are all of these people falling in?" To find the root cause, you abandon your downstream post and track up the river  to find a collapsed bridge no longer providing safe passage over the river. Discovering this upstream cause and working to fix it is the critical step that our nation is struggling to take. This is the focal shift, from downstream to upstream, that is so desperately needed in our healthcare system. It would make prevention the focus of our medical efforts and arguably be as effective, if not more, than the standard chemotherapy or radiation that we use to treat cancer today.                Furthermore, a refocusing from the downstream to the upstream shifts the burden of responsibility off the individual and onto the industries and agencies that are in place to protect us. Rather than the default question of "what did I do to get cancer?" the more appropriate question of "how can these groups better prevent cancer for all of us?" takes center stage.  The Bad Actors                In the river metaphor, there are more nefarious reasons for why people might be falling into the river. The cause may not be as innocent as a collapsed bridge, but may include bad actors who are actively pushing people in. I present to you one such actor: Koch Industries.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   In her book  Dark Money , Jane Mayer describes the shameless violation of environmental and health regulations by this corporate giant. In 1995, a new federal regulation was introduced requiring oil refineries to reduce their emissions of benzene into the atmosphere - a known environmental pollutant and human carcinogen closely linked to leukemia.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   Charles Koch, CEO of Koch industries, maintains a strong philosophical opposition to such regulations claiming that his goal is to "unceasingly advance the cause of liberty" in the face of "arrogant, intrusive, and totalitarian laws." So when one of his own employees, an environmental technician, reported that their benzene emissions were 15 times greater than the legal limit, not only was that employee ostracized from the company, but the reports to the government were falsified to show that emissions were just 1/149th of what the technician had calculated.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   No, Koch Industries didn't get away with it entirely. They pleaded guilty to just one felony charge - "concealment of information" - and paid $20 million in fines. But that number pales in comparison to the  profit  that that single refinery earned in 1995 alone: $176 million. After the fact, the lead prosecutor remarked, "Environmental crimes are almost always motivated by economics and arrogance, and in the Koch case there was a healthy dose of both." This type of reckless and startling behavior is yet another challenge to be recognized in our pursuit for a cure.   What Can You Do?                Invariably, this discussion comes back to what one individual can do in the face of our current environmental and cancer landscape. While there is still much to be learned, there is plenty that we already know. And the first step in any effort to mitigate cancer risk is to educate yourself. Understand which exposures pose the greatest threat and work to minimize them in your daily routine and for those around you. Know that children are far more susceptible to environmental carcinogens, and as such, additional effort should be made to ensure their safety.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                   For a comprehensive list of possible exposures and best practices for prevention, check out what the  NCI recommends here .                Finally, be an advocate for yourself, your loved ones, and your community. If you observe occupational or public hazards that pose cancer risk, don't let it go unnoticed and report it to the appropriate authorities. Call or email your local and state representatives. Encourage them to support public safety measures and funding for epidemiological research. If you live in Washington State, here is the easiest way for you to reach your  senators  and  house representatives .                 The effort to solve the problem of cancer must be a collective one. It's vitally important that the public is as engaged in that effort as the leading researchers and doctors. And if humanity's track record for overcoming daunting challenges is any indication, then I am confident that a world without cancer and environmental catastrophe is not only possible - it is indeed quite probable.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     Links and References   https://goo.gl/Xw3dAC  - The Emperor of All Maladies, Siddhartha Mukherjee   https://goo.gl/QMcjux  - Dark Money, Jane Mayer   https://goo.gl/h6XKdD  - President's Cancer Panel 2010 report   https://goo.gl/EoQuqK  - NCI cancer facts and figures 2010   https://goo.gl/bDD7RP  - Article on developed world and cancer   https://goo.gl/tqCd7u  - Fukushima screening aftermath   https://goo.gl/9MgiBo  - Fukushima alternative reaction   https://goo.gl/F85QQp  - NCI benzene facts   https://goo.gl/qe3iY6  - World War II facts   https://goo.gl/Zo5dFj  - World War I facts   

The Inextricable Link Between Environment and Cancer

              In the spring of 2010, the US President's Cancer Panel released a 200-page report detailing the relationship between environment and cancer. Their findings? Shocking. Nearly 80,000 chemicals are approved for daily use by the American public. And yet only a few hundred of those chemicals have been tested for safety, meaning the vast majority of them are largely unstudied and their health consequences poorly understood. 1.5 million Americans would be diagnosed with some form of cancer in 2010, and over 550,000 would lose their lives. That's greater than the total number of American casualties suffered during World War I. And World War II. Combined. Now here's the riddle: what fraction of those diagnoses and deaths are linked to environmental exposures? And here's the unsettling answer: we simply don't know.

      My Family's Cancer Story                  June marks an important month in the origin of LiveSmyle. It was in the month of June that the inspiration for this platform was born out of the loss of an extraordinary woman: Dr. Tulay Kent. On the second anniversary of her passing, we honor her memory by sharing the story of how cancer impacted her and her family. The story is told from my point of view, her son, with the help of my step-father who provided important details for the times I wasn't around.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     June 3, 2015                  It's 1:15 in the morning.                  A sister, a husband, and a son sit quietly and look on as their loved one struggles to take her final breath. The feeling is surreal. Almost as if I'm observing the scene from someone else's perspective. I mean, I'm in the room. I'm sitting right next to her in bed. But ironically, the gravity of the moment pushes my mind far away from what's happening. Is this really happening? Am I actually watching my mother die right now?                  To understand how we ended up here, and more importantly, to figure out where to go next, we first need to go back in time and explore the world of cancer from a personal perspective.  Mid September, 2011                  The story begins on a business trip to Mexico.                  My mom had travelled down for a brief dental conference when she and a few of her colleagues noticed that her skin and eyes were turning yellow. Naturally, a doctor's appointment was arranged upon her return home to collect blood and urine samples.   September 27, 2011                  The appointments begin.                  Following negative results from the blood and urine samples the previous day, an ultrasound is scheduled as the next diagnostic step. With her eyes and skin still yellow, she goes in for the imaging appointment around 5:00PM. At this time, my step-father, Tuna, is at home dealing with housework when he receives a phone from call my mom. She's in tears and can only manage a few words at a time.                  "Tuna, they found something. Come over here."                  "What do you mean? What did they find?"                  "I have something in my pancreas."                  Tuna immediately sets out to the imaging center where a CT scan is being set up to further investigate what was found in the ultrasound. With my mom in the scanner, a radiologist and Tuna watch the cross-sections load on the computer screen one image at a time. Even without any formal medical training, Tuna recalls, "As the slices of images were coming in, I saw it. And that is when our life changed."                  However, nothing conclusive can be determined that night. For those who are unfamiliar with the medical field, an image is not how definitive cancer diagnoses are made. For that, a biopsy is needed. So one was scheduled.                  The next 10 days are a blur of doctor's visits, more imaging appointments, and of course, the biopsy which is done through a procedure called fine-needle aspiration. In my mom's case, the aspiration is done endoscopically meaning a thin tube with a camera and ultrasound unit are inserted down the throat and into the stomach where it can sample the pancreas non-invasively.         </iframe>" data-provider-name="YouTube"                                Within a day or two, the doctor calls back with the news. It just so happened that Tuna was in my mom's dental office for a routine cleaning when he received the call. Pancreatic ductal adenocarcinoma. Cancer. In what I can only imagine must be one of the most difficult conversations to have with your significant other, Tuna goes into my mom's private office and closes the door. She looks up.                  "Is it cancer?"                  A pause.                   "Yes."                  She took the news in stride as if she was already expecting to hear the worst. And in classic fashion with her strength on full display, she shared a hug with Tuna before marching right back into her clinic to see her next patient.   October 7, 2011                  Day 1 at the Seattle Cancer Care Alliance.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     It's an overwhelming day meeting the entire medical team designated to my mom's case. The oncologist, the nurse, the surgeon, the radiologist, and a host of others file into the room and introduce themselves. The agenda for the day is to lay out a treatment plan that gives her the best chance for survival. And here it was:   Start with a two-month, very intense combination chemotherapy regimen.  Follow that with 10 straight days of radiation therapy.  Allow the body to recover for about a month  Surgically remove the pancreas, gallbladder, spleen, and duodenum.                   Wait a minute. Why are we removing all of these organs? Well as it turns out, the gallbladder and duodenum are connected to the pancreas and are within the path of possible metastasis, so they have to go. And the spleen couldn't be saved because it was being pinned by the tumor. It seems drastic and even a bit primitive, but believe it or not, this is the most effective way to treat cancer with today's technology. The gallbladder, spleen, and duodenum are collateral damage in the pursuit of obliterating cancer.                   So what's the prognosis? It's the question everyone wants an answer to: how long do I have left to live, doc?                   With pancreatic cancer, the number they always give is three to six months.                   Three. To six. Months.                   Tuna shares what it's like to always have that hanging over your head:        </iframe>" data-provider-name="YouTube"         November 4, 2011                  So where was I this whole time?                   In 2011, I was 19 years old and a sophomore at UCLA. I had just started living in my fraternity, gotten a new job at the student gym, and was soaking in the SoCal sun during my free time. Life was simple and it was good.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     I received a call in late October from my parents asking if I would like to visit home next weekend. I resisted at first.                  "I'm coming home for Thanksgiving in a couple weeks, can't I just see you guys then?"                  Classic teenager reasoning. But with a little more persistence, Tuna convinced me to fly home on November 4th without raising any red flags on my radar. After all, life was simple and good, so a weekend trip back to Seattle for home cooked meals and sleeping in a bedroom that wasn't on the bottom floor of a frat sounded great.                  The first red flag appeared when I saw my mom after arriving home. I remember getting out of the car and seeing her standing in the doorway to the garage. She looked tired. And thinner than usual. But as soon as she saw me she smiled, and I immediately dismissed the thought. Maybe she had a long week at work. Maybe she hadn't been sleeping well lately.                   We had dinner together as we always did - my mom sitting to my left and Tuna to my right. We caught up and talked about school, the usual stuff. But I did notice an unfamiliar tension in the room. The energy in our conversation wasn't there, and when dinner was over, a serious expression came over my mom's face. Now, I don't remember the exact words, but the next few minutes went something like this.                  "Hakan, we wanted you to come home because we have some news."                  "Okay, what's going on?"                  In my mind, I'm racing through what she could possibly have to tell me. What was so important that they literally flew me home, waited until the end of dinner, and were framing a formal, press-release like announcement. To be perfectly honest, cancer didn't even cross my mind. Not even close.                  "These last couple weeks, we've been in and out of the doctor's office, and they found something. It's cancer."                  Silence.                  I didn't know what to say. Or what to think. Or what to feel. I just stared back at my mom. Cancer? But, you're fine. Sure you look a little tired, but...cancer?! I looked over to Tuna still unsure of how to process what she had just said. He was looking down at his hands in his lap, and I could see his tears forming. And then it slowly started to hit me. Like being drawn into the current of a giant wave before it comes crashing over you. I tried to be strong and give her a hug for support, but I quickly realized that I was the one who needed it. I couldn't control myself, and I just began sobbing into her shoulder.                  "How ironic," I remember thinking, "she's the one with the life-threatening illness, and yet she's the one comforting me."    December, 2011                  The brunt of the therapy begins to take its toll.                  First it's chemo. A cocktail of different drugs to attack the tumor as aggressively as possible. It's about 2 sessions per week with the rest of the days off to recover and get ready for following week. And all of the classic symptoms are present: the nausea, the fatigue, the hair loss. I was back at school of course, so I didn't see the steady decline in her health. And to this day it remains difficult for me to picture such a strong woman be brought down by this kind of treatment.                  But it was only the beginning.                  Tuna explains that the ensuing radiation therapy that came at the final 10 days of the year was even more drastic. The nausea more violent. The fatigue more debilitating. Diarrhea, loss of appetite, peeling skin, paresthesia. It's tortuous what we are willing to endure in the face of death. By the end of the 9th day, she was too weak to attend the final session on December 30th. She spent the entire next few days in bed.                   Happy fucking new year.   January 30, 2012                  The majority of January passes by relatively quietly.                  She's given a lengthy break from chemo and radiation to recover and gather strength for her big surgery on the 30th. The plan is to remove her pancreas to eliminate the cancer as well as her gallbladder, spleen, and duodenum as they had been deemed unsalvagable.                   I flew home to be with her and Tuna for the surgery. We all knew this was going to be a big operation, and I knew I needed to be there. But there were more important things on my mom's mind. You see, I had a general chemistry midterm the following week, so she must have reminded me at least 5 times to bring my textbook so I could study during her surgery.                   Mom, are you serious? Bless her heart.                   It was a grueling day for everyone. We arrived at the hospital at 5:30AM. The surgery lasted 14 hours. We would periodically get updates over the hospital phone, so we weren't completely out of the loop. It was getting late when the surgeon finally walked into the waiting room. He looked exhausted, but his mood was positive. The surgery was a success, and there were no complications. He also made sure to tell us that the only thing he ate all day was half a bagel.                   Seriously, man? Whatever, as long as you didn't mess up.                  There are few moments throughout this entire saga that I remember very vividly, and seeing my mom after surgery is one of them. The room we entered was dimly lit, and she was quietly lying in a hospital bed with the occasional beeps and chirps coming from the various medical devices she was hooked up to. She could barely turn her head to look over at us as we walked in. I had never seen her so weak and frail. Her eyes were half open, and I could see her attempting a smile. We stood around her bed holding her hands. After some time, she finally gathered the strength to speak.                  "Hakan," she whispered, "were you able to study?"                  I couldn't help but laugh. And I had a feeling that deep down, she was too.                   Sometimes I wonder how her brain worked. She must have been in the most delirious state of mind coming out of surgery, yet the first thing she thinks about is if I'm going to do well on my exam. And that is such a poignant example of how deeply she cared about and supported anything I ever did. Showing this kind of unconditional love is the most precious gift she left me.   Spring to Summer 2012                  This was a period of recovery and adjustment to a new life.                  Adjuvant chemotherapy continued until she was tapered off in June. There were fewer sessions and the drugs were not as strong which made the side effects less severe. Of course, without a pancreas she was now a diabetic. Finger sticks, blood glucose monitoring, and insulin shots became a part of everyday life. She was rather obsessive about making sure her blood sugar was always within healthy limits, another classic example of her strong and stubborn character. Tuna would eventually convince her to get a permanent, wireless measurement and delivery system to automate some of those steps. She also had to take pancreatic enzymes with meals to digest fats. It was a new life, and she was up to the task. She even managed to park the jetski on the dock one day - an accomplishment unsurpassed by anyone to this day!     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Around March we received mixed news about the biopsy samples that were taken from her surgery. The good news was that all 12 lymph nodes that were removed showed no signs of metastasis which dramatically improved chances of long term survival. The bad news, however, was that the surgical margins of her pancreas were not clean. In layman's terms, this means it's possible that not all of the cancer was removed during surgery, and it dramatically reduced chances of long term survival.                   We were left feeling hopeful yet scared.   October 2012                  A serious setback.                   After one of her regular follow-up appointments at the Seattle Cancer Care Alliance, two small lesions appeared on her liver and were eventually confirmed as metastasis. At this point you have a couple options:   Do nothing. Yeah right.  Start chemotherapy again. This is the most common option, but it's often ineffective. Why? Because metastatic and recurrent cancers often show resistance to conventional chemotherapy. It's like survival of the fittest. If a few cancer cells are able to squeak by during initial treatment, it's usually because they were the strongest of the bunch. So when they come back, they not only come back with a vengeance, but now the entire tumor is made up of chemotherapy-resistant-super-cancer cells (technical term).  Try experimental therapy. This had her name written all over it. And she wanted to try immunotherapy.                   The only problem is that qualifying for clinical trials is not easy. There are many exclusion criteria that prevent patients from enrolling. But that's how the research process works, and you have to respect it. So, the search continued.   May 2013                  Mom decided to sell her dental practice.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     With uncertainty clouding her future and production declining at work without her at the helm, this was the best decision for all parties. She sold her practice to a friendly husband and wife, a prosthodontist and general dentist respectively, who now own and operate Wallingford Smiles.   August 2013                  Finally, we qualify for a clinical trial.                  An experimental immunotherapy in Rhode Island had just been approved for testing on human subjects, and she fit all of the criteria for the study. Initially, there is optimism as the study is supposed to have few side effects and target the cancer cells with high precision.         </iframe>" data-provider-name="YouTube"                         So in August, my mom and Tuna set out for Rhode Island and begin the trial. On the first day, they take a sample of her blood to extract and cultivate her immune cells. They are engineered over the next couple days to target proteins expressed in greater quantity on the surface of her cancer cells compared to her healthy cells. In theory, once the immune cells are given back to her, they should target and destroy the cancer cells to a greater degree than normal cells. This sounds great, until you remember that this is an experimental trial and not everything works exactly how you expect it to.                  The engineered immune cells began targeting and destroying the inner lining of her intestines resulting in the most severe side effects she had ever experienced. Her inability to eat combined with the therapy-induced diarrhea resulted in a 30 pound drop in weight in just 3 weeks. Tuna describes this time period as "the worst 40 days of my life." Even worse than losing her was watching her suffer during this trial.                   Well did the therapy work at least?                  Unclear at best. Not really at worst. Two final biopsies were taken at the end of the trial, one from each lesion. While one showed necrotic tumor tissue (good), the other still showed active cancer (bad). All of that suffering for some mixed results. Patients who enroll in clinical trials don't get the credit they deserve for putting their lives on the line in pursuit of advancing the medical sciences.  Fall 2013 to Spring 2014                  An attempt to restore normalcy.                   Following the Rhode Island trial, my mom and Tuna returned to Seattle to rebuild her health. She had a food pump installed at home to feed her via an IV port. And within less than 3 months, she was back to her old weight ready to challenge me at ping pong.         </iframe>" data-provider-name="YouTube"                         In early 2014, she started seeing a new oncologist in the hopes that a change might result in more positive results. The doctor put her on a new chemotherapy cocktail to address the liver lesions, though it wasn't anything fancy. The side effects were more tolerable which afforded her a sense of regularity again. She and Tuna took trips to Vegas, Mexico, Turkey, and Los Angeles to visit me for graduation. Things seemed okay for a brief period of time.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     July 2014                  The beginning of the end.                   As things looked like they might be getting better on the surface, a new problem was brewing behind the scenes. An inexplicable, chronic back pain slowly began to creep into her life. Over time the pain became worse, and they tried everything to treat it. Acupuncture. Yoga. Injections. Pain pills. Vibroacousitc therapy. Chiropractors. Specialists. You name it. She tried it. But the pain only got worse and spread all over, and no one had a solution. It would eventually come to dominate her life. But even then she persevered. In the midst of all this, Tuna threw her an amazing 50th birthday party which she was able to enjoy with her family and friends.     




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  

 






  
  
  
     March 2015                  How do you bring up the topic of death?                  It was around this time that our new oncologist recommended stopping chemotherapy to focus on treating her pain. It's a difficult pill to swallow, but palliative care is one of those things that is often overlooked during end of life care. I highly recommend this book which provides powerful insight into this issue:     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     April 2015                  An unexpected complication.                  One idea to treat the pain was to install a permanent pump that would deliver hydromorphone directly into her bloodstream on command. However, during installation of the pain pump, the needle of her insulin pump was wiggled out of its port. Thus, she stopped receiving insulin and her blood sugar skyrocketed overnight. The doctors had no clue what the problem was, so they administered liters of saline and fluids to dilute her blood and lower her glucose levels.                   Over a span of three days she gained 30 pounds almost entirely of water weight. The doctors were puzzled again. Why wasn't the fluid draining? It was the cancer. The lesions in her liver were constricting a major vein that is responsible for draining blood from the lower half of the body. A stent needed to be placed to relieve the blockage, and the pre-procedural CT scan showed a horrifying picture of reality. With our eye off the ball treating the pain and no chemo to slow the cancer, it had spread. Everywhere. Below is an excerpt from a medical summary of her scan around that time.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     May 10, 2015                  Mother's Day. Her last good day.                  Tuna and I both remember this day as the last one we enjoyed together as a family. With the liver stent placed, insulin pump repaired, and pain pump providing some relief, we were able to go to the Palisades for a Mother's Day brunch. It was clear that things weren't going to get better, but at least we were able to have this day.      




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  

 






  
  
  
     May 27 to June 3, 2015                  Her last week was an absolute blur.                  It was like sprinting to the finish of an exhausting marathon.                  Wednesday - the doctors ask Tuna if he thinks they need to start hospice care. He says no, still hopeful.                  Thursday - reality sinks in. Tuna calls back and schedules a hospice nurse.                  Friday - the nurse arrives. My mom and Tuna once again have an unimaginably difficult conversation.                  "Am I dying?"                  "Yes dear, I'm losing you. But I love you."                  Saturday - after hearing the news, I come home from dental school which I had started at UW earlier that year.                  Sunday - my mom's sister flies in from England to be with us for her final days. No one knows how much time she has left. Friends visit to say their goodbyes.                  Monday - we spend a quiet day together as a family.                  Tuesday - she decided to stop eating. I distinctly remember sitting with her on the balcony, overlooking Lake Sammamish and briefly thinking, "You know, this is actually quite peaceful." I only managed to take a single picture during this time, and wow was it difficult.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Wednesday, June 3, 1:15AM - she dies on her own terms with her family by her side. Finally, respite from the madness, relief from the pain.   Where do you go from here?                  I share this story as a glimpse into a few lives that were touched by cancer. But as Tuna so honestly put it, "These were the motions, not the emotions." It's hard to put into words how that period of time actually felt for all of us. And we're not the only ones. This is happening to literally millions of people, every single year, all over the world. It's an impossibly complex problem which Tuna once again so eloquently describes:                   "Cancer is a horrible disease. It robs you of your security, replaces it with fear. It robs you of your hopes and dreams, replaces it with uncertainty. It robs you of your physical strength, ability and energy, leaving you with memories of what you were able to do. Ultimately, after slowly stealing from you little by little, it robs you of your next breath, replacing you with memories of you."                  So what do you do in the face of tragedy?                  You do what she did. You bounce back. You look ahead. You hope. But most importantly, you act. We're an interesting bunch, us humans. We have this extraordinary capacity to identify the problems in our world, and an equally extraordinary capacity to solve them. It is with these lessons she taught me during her life and the inspiration she left in the wake of her death that I move forward more confident than ever that we will find a solution to the problem of cancer. After everything she gave me in my life, I would be remiss if I didn't give everything I have to join that effort. And that's why I started LiveSmyle.        </iframe>" data-provider-name="YouTube"                         It's a modest attempt to raise awareness, to educate, to make an impact. I can't think of a more meaningful purpose to guide me. And I can't thank her enough for giving me the strength to do it.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


     In loving memory, Dr. Tulay Kent (December 10, 1964 - June 3, 2015)

My Family's Cancer Story

              June marks an important month in the origin of LiveSmyle. It was in the month of June that the inspiration for this platform was born out of the loss of an extraordinary woman: Dr. Tulay Kent. On the second anniversary of her passing, we honor her memory by sharing the story of how cancer impacted her and her family. The story is told from my point of view, her son, with the help of my step-father who provided important details for the times I wasn't around.

      A Brief History of US Cancer Policy                  The story of cancer policy in the US is a fascinating tale of hopeful optimism clashing with stark reality. But in the decades-long history of cancer legislation, the community pushing to accelerate cures for cancer remains more hopeful than ever that a solution is just over the horizon. Let's take a look inside the minds of the individuals who have shaped the landscape of cancer in America and how exactly we ended up where we are today.   Founding of the National Cancer Institute                  The story begins in 1937 with the signing of the National Cancer Institute Act by President Franklin Delano Roosevelt. Well, in reality the story began decades before 1937, but this is a great starting point for our purposes: the founding of the National Cancer Institute (NCI). This was to be the federal government's primary agency investigating the realm of cancer and its treatment. In effect, the NCI was created in the hopes that it would one find a cure for cancer. Though the bill did not designate any money toward the formation of the NCI, it established a committee which would eventually become the President's National Cancer Advisory Board.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Three short years later, President Roosevelt designated six new buildings to the National Institute of Health (a parent agency to the NCI), one of which would become the NCI headquarters. This marked the start of a national effort to confront a disease that would eventually parade its way to the forefront of American life. At this time however, cancer had nowhere near the amount of public attention that it garners today. It competed against smallpox, typhoid fever, and tuberculosis among other diseases for the public's awareness. But that would quickly change as cancer related mortality jumped 30% between 1900 and 1916, climbing to the nation's second leading cause of death by 1926 - a position it still holds today just behind heart disease. Though the formation of the National Cancer Institute was a strong response to the spreading concern over this disease, America would need something much stronger to handle the relentless growth that cancer is capable of demonstrating.        
        The War on Cancer Begins                  Despite a promising start, the excitement and enthusiasm over the National Cancer Institute abruptly fell. The start of World War II reorganized American priorities, and thus cancer research took a backseat in the minds of many citizens. In fact by the 1950s, it was reported by an editor at the  New York Times  that they weren't even allowed to print the word "cancer" in their pages in fear of losing readership. But during this low point in the public's awareness of cancer, a new war was brewing in the shadows. Cancer wasn't waiting for geopolitical tensions to resolve. It marched on, quietly taking the lives of millions of Americans over the next two decades, and it became very clear that a new response was in order. The response this time would be all out war. Officially launched two days before Christmas in 1971, the National Cancer Act was signed into law by President Richard Nixon in front of a beaming media audience and the rest of the nation over TV.     




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  

 






  
  
  
                     The National Cancer Act of 1971 promised " to strengthen the National Cancer Institute in order to more effectively carry out the national effort against cancer." So how exactly would it do that? Let's break it down.    The director of the NCI would be granted greater authority to plan and develop a National Cancer Program. The program resulted in the creation of a "bypass budget" which was a procedure that allowed the NCI director to submit his annual budget directly to the President and Congress effectively bypassing its parent agencies - The Department of Health and Human Services and the NIH.   The existing National Advisory Cancer Council would become the National Cancer Advisory Board - an 18 member committee hand-picked by the president to aid in the development of NCI programs.   The President's Cancer Panel would be formed - a three member panel, once again hand-picked by the president, to submit annual reports on the national status of cancer research and treatment.          
                        In total, over $400,000,000 would be pledged to fund the construction of 15 new cancer research centers across the nation. This amount of authority and attention given to cancer was unprecedented in US history. And there were two individuals at the heart of reconstructing America's relationship with cancer: Mary Lasker and Sidney Farber.      




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  

 






  
  
  
                     Mary Lasker was a Manhattan socialite and businesswoman described of possessing "legendary social and political energy". With deep connections in Washington D.C. and an unrelenting desire to end human suffering fueled by the loss of her loved ones to disease, Lasker personally spearheaded the overhaul of cancer awareness in the US. She leveraged her professional experiences and personal connections to fundraise millions of dollars throughout the 1940s. The shear amount of money and hype she was able to generate around cancer had never before been seen. She would team up with a scientist named Sidney Farber, and together they would become a formidable duo in the arena of cancer politics.      

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Sidney Farber was a pathologist at the Children's Hospital of Boston who began researching the idea of treating leukemia using chemicals in the late 1940s - an idea almost unheard of at the time. Up to this point, treating cancer meant either undergoing major surgery to remove the tumor or receiving huge doses of radiation to incinerate it. Leukemia was an enigmatic cancer of the blood that could not be treated by either of those methods. Farber's great insight was to use a class of chemicals known as  anti-folates  to demonstrate that the progression of cancer could be slowed down using medication. His contributions to this field eventually led to the development of chemotherapy as we know it today.     

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     Together, Mary Lasker and Sidney Farber provided the one-two punch that was needed in Washington to flip the script on cancer. With Farber's technical expertise and Lasker's political clout, the two launched an effort that eventually resulted in the signing of the National Cancer Act of 1971 along with a national embrace of the War on Cancer.                  So where did that get us? What kind of progress did we make as a result of the law passed in 1971? The number of NCI-designated cancer research centers grew from the 15 proposed in the bill to a whopping 69 in operation today. The $400,000,000 pledged in 1971 is absolutely dwarfed by the $5,210,000,000 appropriated to the NCI in fiscal year 2016.  An incredible total of $122,025,327,220 has been appropriated to the NCI since its inception in 1937.               

  

  	
       
      
         
          
             
                  
             
          

          

         
      
       
    

  


                     This begs the question though: have any of these numbers resulted in any improvement for cancer health outcomes? Actually, yes! Though it may have taken a while to feel the impact, the American Cancer Society reported that cancer death rates have dropped 25% since they peaked in 1991. Our scientific understanding of cancer has taken leaps and bounds as technological innovations continue to shape today's research. Developments in cancer detection, diagnosis, therapy, and most importantly prevention have saved an estimated 2.1 million lives over the last twenty years. Progress has been remarkable and we are well positioned to continue on this path of success for years to come.                  But we have to be cautious in how we approach cancer in the 21st century. This community has often looked to NASA's successful Apollo program and Neil Armstrong's first steps on the moon as a bastion of American determination, leadership, and pioneering. President John F. Kennedy set the seemingly impossible goal for us to reach the moon in under a decade, and we absolutely crushed it. It's tempting to apply that same attitude toward cancer, and why not? If we just try hard enough and throw enough money at it, we can cure cancer too. Right?     




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  

 






  
  
  
                     The problem, astonishingly, is more complex than rocket science. Believe it or not, our deepest understanding of the fundamental biological mechanisms that lie at the center of human health, let alone cancer, is incomplete! Yes, we are making tremendous headway in this field on a daily basis, but even this poses its own problem. The sheer amount of data and knowledge that we produce year after year does not easily translate into one, straightforward cure for cancer. For example, a basic scientific discovery that translates into a new type of cancer treatment may take years, even up to a decade to fully materialize from concept to tangible therapy. Progress in the medical sciences is a slow and lumbering process, and this is one area ripe for improvement in our next iteration for cancer policy.   A Moonshot to Cure Cancer                   While the War on Cancer was an effective stimulus for funding cancer research in the 1900s, we must move on to a new framework in how we think about this disease. Why? Because the analogy of fighting a war can only be upheld for so long before it begins to crumble precariously under its own weight. While one could make the argument that we are "winning the war on cancer," it's actually much easier to be critical of the progress that we would have hoped to make by now. Every president since Nixon has promised to be the one who ends cancer, and not one has lived up to that promise. Many cancer awareness campaigns have urged patients and their families to "fight on" and "never give up," and many have grossly overlooked the emotional toll of this mentality. Our relationship with cancer needs to transform from adversarial to educational so that we can truly understand what's going on in our cancer research and treatment centers across the nation. The 21st Century Cures Act, endearingly known as the Cancer Moonshot,  attempts in part to aid in this transition.        
                           In October 2015, Vice President Joe Biden made the announcement that he would not be joining the race for the presidency that would eventually be won by Donald Trump. In his announcement, Biden included a heartfelt message saying, "I believe we need a moonshot in this country to cure cancer. It's personal, but I know we can do this". He made the statement in honor of his late son, Beau Biden, who had recently died at the age of 46 after a two year period with brain cancer. Three months later, President Barack Obama would echo Biden's call for a national cancer moonshot during his final State of the Union address to the nation. In it he proclaimed, "For the loved ones we've all lost, for the families that we can still save, let's make America the country that cures cancer once and for all." Shortly thereafter, a Cancer Moonshot Taskforce was established under the leadership of Vice President Biden and the highest ranking administrators from the FDA, NASA, Department of Defense, National Science Foundation, Department of Health and Human Services, NIH, CDC, NCI, and a handful of other agencies.        
                        In collaboration with congress, the Cancer Moonshot Taskforce worked on a bill that would be called the 21st Century Cures Act. This federal legislation is comprised of three sections meant to impact various areas of healthcare: research and drug development, behavioral health, and healthcare access and quality improvement. The bill provides $4.8 billion in new funding to the NIH, $1.8 billion of which is specifically set aside for Biden's Cancer Moonshot over the next seven years.  The bill passed with huge support in both the House (392 to 26) and the Senate (94 to 5), and the bill was signed into law by President Obama on December 16, 2016. Just prior to the House vote, Senate Majority Leader Mitch McConnel (R-Ky.) asked to rename the section granting funds for cancer research after the Vice President's son, Beau Biden. The Vice President was moved to tears as the House was in full support of this amendment.                  On its surface the 21st Century Cures Act looks like a progressive bill with bipartisan support to accelerate research for cancer, Alzheimer's, and drug addiction. But it doesn't come without its cast of vocal critics. Senators Elizabeth Warren (D-Mass.) and Bernie Sanders (I-Vt.) both voted against the bill with Senator Warren going so far as to say, "When American voters say Congress is owned by big companies, this bill is exactly what they are talking about".     




 
   
    
      

        

        
          
           
          

          
        

        

      

        

        
          
           
          

          
        

        

      
    
   

  

 






  
  
  
                     Her comments refer to sections of the bill that work strongly to the benefit of big pharma and medical device manufacturing companies by deregulating steps in the manufacturing process. A progressive activist group known as Public Citizen echoed Senator Warren stating that "Congress gave Big Pharma and the medical device industry an early Christmas present that comes at the expense of patient safety by undermining requirements for ensuring safe and effective medications and medical devices".  So where does this leave us today?                  The good news for the cancer community is that a huge sum of money has been allocated for cancer research, and public awareness of the issue has sharpened with the former Vice President's involvement in honor of his late son. Of course, there is cause for concern under the Trump administration which has called for a $6 billion cut to the NIH - an agency that leads the world in biomedical research funding at $32.5 billion annually.                  Cancer remains a complex issue in the world of politics, but it is not impossible for the layperson to understand. Many of the nation's leading cancer research centers and agencies have spoken out against Trump's proposed budget and are poised to challenge it with the same ferocity that they approach their own work. Check out the links below if you want to learn more, and thank you so much for reading this month's post!        
        Links and References    https://goo.gl/Xw3dAC  - The Emperor of All Maladies, Siddhartha Mukherjee   https://goo.gl/QWyFSj  - Summary of the NCI   https://goo.gl/NYy0Bw  - NCI budget fact book   https://goo.gl/LP0Xri  - NCI summary of the National Cancer Institute Act of 1937   https://goo.gl/HnH8Ku  - NCI summary of the National Cancer Act of 1971   https://goo.gl/Fac48r  - Media coverage of the National Cancer Act of 1971   https://goo.gl/4r1bRO  - NCI summary of the Cancer Moonshot   https://goo.gl/9rM7r9  - White House press release on the Cancer Moonshot   https://goo.gl/M51ceC  - Media coverage of the Cancer Moonshot   https://goo.gl/AsvrTK  - Media coverage of the Cancer Moonshot   https://goo.gl/e6XBwc  - Media coverage of the Cancer Moonshot

A Brief History of US Cancer Policy

              The story of cancer policy in the US is a fascinating tale of hopeful optimism clashing with the starkness of reality. But in the decades-long history of cancer legislation, the community pushing to accelerate cures for cancer remains more hopeful than ever that a solution is just over the horizon. Let's take a look inside the minds of the legislators who have shaped the landscape of cancer in America and how exactly we ended up where we are today.