Polycythemia Vera (PV)

    Age: 59

    “In some ways I am blessed to have had this experience because it changed who I am for the better."
    Failure is not an Option by Jennifer Acker
    How one MPN patient used his business acumen and Buddhist philosophy to change his prognosis.
    Meet Jeremy Smith
    *This story is a patient’s first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult with your physician (preferably an MPN specialist) before making any therapy or lifestyle change.
    Jeremy is the Co-Founder and CEO of Launchpad, a business strategy, representation and branding firm located in the San Francisco Bay area, the former Co-Founder of Level one Marketing, and an MPN patient of nearly three decades.

    He smartly used the lessons from business to fight cancer. But cancer had more to teach this CEO about how to live his life and run a business than he had anticipated.

    Having an MPN diagnosis for nearly three decades hasn’t stopped Jeremy Smith from chasing his dreams. “In some ways I am blessed to have had this experience because it changed who I am for the better. I would be lying if my MPN has not influenced my philosophies on how to run a company.”

    Smith was diagnosed with Polycythemia Vera in 1989 at the age of thirty. While his career was taking off after a recent promotion to President of his company, his personal life wasn’t. He found himself going through a divorce he didn’t see coming, fighting depression, fatigue, and now a rare diagnosis. Smith recalls the hematologist he was seeing told him not to expect to live more than ten years and to prepare for the worst and get his life in order.  Smith recalls, “On my drive home I knew I wouldn’t waste another minute with a doctor, who in his mind, saw my fate as sealed.”

    So he set out to find a new doctor to address his many concerns, and was pleased with the answers he found from Dr. Stanley Schrier at the Stanford Hematology Clinic, but was thrown by the doctor’s grumpy demeanor. “I asked him if he ever laughs. He asked what I meant. I told him I am the one dying here and you are grumpier than me. I expect to live a very long time and you and I will be seeing a lot of each other. I need you to be the guy who’s up beat.” Smith says, “This conversation established a strong rapport between us.”  As much as he liked his doctor, Smith encourages MPN patients to have at least two hematologists in their corner. “We can learn more about our options having more than one hematologist. I am a data and information freak and have a total of four hematologists.”

    And it wasn’t long after his diagnosis that Smith used his business acumen to fight PV. “I made the decision early on I would take the lessons from my business and apply them to fighting PV.  Just like a company has a business planall MPN patients should create what I call an MPN Life Plan. Included in that plan should be your goals, desired outcomes, exercise and diet program, and a mission statement.  My mission statement is from NASA ‘Failure is not an Option.’ Having a plan led me to start reading every article on cancer I could find. I read an article that cited a study of cancer patients who had become active in exercise programs had lessened their symptoms of depression and fatigue.  Even overall life spans were improved with strenuous cardiovascular exercise and weight lifting. I now believed I had compelling data to help me create an exercise program to deal with my top four issues: depression, fatigue, poor diet, and weight. My hypothesis was that if I could have an impact on those four issues, I could improve my long-term health and maybe just maybe slow the disease down.”

    And the plan has clearly worked for Smith.  As a metrics person, he tracked his data by paying for his own lab tests and saw positive changes.  He further noted, “I read one of the risks MPN patients, and most cancer patients in general have is the long-term loss of muscle mass and bone structure. It’s not easy for many MPN patients to rebuild lost muscle, but that doesn’t mean it’s impossible, as I have seen the return of some muscle by increasing my protein intake, especially after working out.  By using the right protein supplements and diet, in combination with focused weight lifting, MPN Patients may add the muscle they have lost. “  He continues with this plan today and still opts for healthy organic food choices, and continues to exercise vigorously.

    But it’s not just about the physical progress for Smith; mental health weighs in as equally important in his battle with his diagnosis. Smith states, “Buddhist therapist Surja Jessup entered my life and introduced me to the practice of meditation and the exploration of hypnotherapy. Many of us are more familiar with meditation than hypnotherapy, but when they are both combined the results can be astonishing. I want to be clear this is not easy work, but I can tell you this mind-bending work is worth it.  Through meditation I have been able to calm myself and be more focused and present in my life. Hypnotherapy has changed my entire perspective on my life and the world around me.”

    Having a clear plan gave Smith control and optimism to treat his disease. But cancer had something more to teach Smith as well. “My MPN helped me become razor focused and knowing I may not be here in a year gives me an intense sense of purpose and focus. I want to make everything happen business wise much more quickly because of my MPN. It also allows me to see life through a different lens. Most problems are small to me when you have cancer.”

    In 2012 Smith transitioned to myelofibrosis. And his lessons in Buddhist philosophy have proved useful at this juncture.  He adds, “I never viewed it as a failure but part of the inevitable process. The longer we live the more the odds of transition play a role in some of our lives. I have not wavered from my plan and continue with my exercise and diet and feel fantastic. I also have a new tool in my battle, Pegylated IFN. The drug has improved my immune system and my bone marrow biopsy shows it’s helped me remain stable.”

    After perusing Smith’s company website, it doesn’t take long to realize this is a company that prides itself on breaking the status quo and doing the impossible. It’s easy to make the connection here. Jeremy Smith has never accepted the status quo with his prognosis either, “People who have interacted with me always come away with a sense of passion, intensity and purpose. Part of that comes from my mother who died from cancer at forty-three. I learned from that one lesson: in a blink of an eye everything can come crashing down.”

    In spite of everything, Jeremy Smith clearly has a sense of gratitude and purpose. ”When I was first diagnosed with PV I often had my phlebotomies in rooms at Stanford with people who were dying from AIDS. I spent time talking with these patients and have never forgotten them. I am grateful that I have been given an opportunity to fight this disease and have found a way to extend my life so that I could see my children grow up and have children of their own. I have also been blessed to fall in love again and marry a truly wonderful woman.” For this CEO and MPN patient, failure isn’t an option.

    Contributed by Jennifer Acker

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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