No Mud, No Lotus: My Battle with Stage IV Lung Cancer

Stone Athletic Medicine is about sharing the latest evidence in health and movement science to guide and challenge what health care providers do for their clients. This article is not about that.

Stone Athletic Medicine is also my personal place to share my thoughts on things I am very passionate about. This article is about that. I am not sure why I am putting my personal thoughts and feelings out for public display. For some reason, I am compelled to do just that. Last month, I experienced a low mental point.  Some of the things I did and read (shared here) really helped me. Perhaps this article is my personal coping strategy. I am hopeful that sharing my personal experience can help someone else. 

“No mud, no lotus flower” is a popular saying in Buddhism. The meaning is simple: in order to become a beautifully bloomed lotus flower, you must grow from thick, sticky mud. The sufferings of life—the mental, psychological (jealousy, pride, depression, anger, sadness), and the physical (illness, injury, death, pain)—are inevitable. Accepting and embracing these sufferings allows you to grow. When you accept these things, you begin to appreciate the things that bring you happiness and joy in life. I have always tried to live my life this way. I do so even more now.

 

 

Most people are afraid of suffering. But suffering is a kind of mud to help the lotus flower of happiness grow. There can be no lotus flower without the mud. – Thich Nhat Hahn

***

After a few months of suffering from a chronic, unrelenting cough, I finally saw a pulmonologist who performed a CT scan and biopsy. On August 16, 2016, I finally had an answer: stage IV non-small cell lung cancer. The cancer had metastasized to both lungs (most of the right), the pleural space around my lungs, and the mediastinal lymph nodes. Just like that, my life was changed.

Lung cancer is by far the leading cause of cancer death among both men and women; about 1 out of 4 cancer deaths are from lung cancer. Despite the overwhelming amount of research funding dedicated to breast cancer, each year, more people die from lung cancer than from colon, breast, and prostate cancers combined.

When diagnosed, the doctors told me “This is irreversible. We do not try to cure you at this stage. We aim to control it and extend your life as long as possible. Josh, we do not know if you will make it to Christmas, one-year, or ten years.” The grim prognosis was a difficult pill to swallow, especially having a 5-year-old little boy and a great wife at home who need me.

***

I am often asked, “How do you stay so positive?” “Why are you not so concerned or scared?” The answer is simple. When faced with this you have two options: accept it or don’t. It really is that simple. If you do not accept it, cancer will undoubtedly win. It will take over and control every aspect of your life. If you do accept it, it will be a part of your life, but it will not control your life. The teachings of Buddhism remind me of this.

Before I go further, this not about religion. I am not telling you one religion is better or worse than the other. Anyone who knows me, knows I appreciate all religions and respect that each of us has his/her own beliefs. I grew up Christian. My entire family is Christian. That said, it was Buddhist philosophies that have kept me even-keeled.

Defined as a religion, Buddhism is not a religion that prays to an omnipotent God or deity. You do not pray to a supreme being for guidance. You do not rely on a powerful entity to cure your disease. Buddhism is a way of life that was discovered by Buddha. The innate suffering of humanity fascinated the Buddha. He famously sat in meditation until he found a path to end suffering. Since then, the Buddha’s teachings have been passed down through generations. The Buddha is not a god. He was just a human who discovered how to bring happiness into your life. He taught people a way of life.

Walk through the hallways of the Siteman Cancer Center and you will see an 8-year-old pushed out of chemotherapy treatment in a wheelchair. You will see a guy with half his face missing and a lady puking from getting infused with poison for 8 hours straight. When you see this, you realize how lucky you are. I live in the moment. I look around and am grateful for what I have in front of me. I realize how fortunate I am, despite this crappy hand life has dealt.

If you know how to make good use of the mud, you can grow beautiful lotuses. If you know how to make good use of suffering, you can produce happiness. We do need some suffering to make happiness possible. And most of us have enough suffering inside and around us to be able to do that. –Thich Nhat Hahn

***

After my original diagnosis, I had a second opinion at Siteman Cancer Center in St. Louis. I began a clinical trial on September 13, 2016. The trial consisted of a common chemotherapy regimen of carboplatin and Altima coupled with an investigational drug called demcizumab. After three months of treatment, I had a phenomenal response. My tumors shrunk by nearly 40%. Then, during a period of maintenance therapy—a time of limited treatment to allow the body to recover—I began getting sick again. I knew something was going on. Sure enough, a follow-up CT scan showed the cancer to be expanding. My right lung was essentially non-functional. Instead of a nice clear lung, my scan showed a white, cloudy, fluid-filled, lung. What was working had stopped. We had to change treatment protocols and opt for a more aggressive approach.

After some testing proved my eligibility, I started a new clinical trial on February 28, 2017. The trial combines investigational immunotherapy injections (Tergenpumatucel -L) with an investigational checkpoint-inhibiting drug (indoximod). Immunotherapy is a promising and growing area in cancer treatment. This immunotherapy is a series of injections that train the immune system to find and attack the cancer cells. The checkpoint inhibitors block the proteins on cancer cells and in a sense remove the blinders so that the immune cells can find and attack cancer cells. The checkpoint inhibitors are in pill form. I take 18 pills (3,600 mg) a day. Yeah, that gets annoying.

Combined with the aforementioned investigational drugs is a new chemotherapy that I started Tuesday, March 8, 2017. This chemotherapy (docetaxel) is a lot stronger and harsher on the body than the previous carboplatin chemotherapy I was taking. So far, the side effects have not been that bad, minus severe stomach cramping. This is an aggressive approach, which makes me happy. From the start, I’ve been asking the doctors to be as aggressive as possible in their choice of treatment. Let’s hope this new treatment starts to shrink the tumors.

***

I have a long road ahead of me. This is not easy. Cancer sucks. The drive to St. Louis sucks. Treatment sucks. Not being able to do what I want to do sucks. I am not sure how long this battle will take. I am not sure if I will win or lose. I do know that I accept the fight, no matter how long or hard it is. I have everything at my side to help me win.

I have a great wife and best friend, Shagra. I have a fantastic, healthy 5-year-old boy. I have fabulous friends and neighbors who continually provide meals, monetary donations, and general help. Family members travel from Pennsylvania to visit and help. My employer has been supportive and accommodating. I am truly blessed to have all that I have. These things, the prayers from friends, and the teachings of Buddhism keep me grounded and focused.

Establish yourself in the here and the now and recognize what is around you. The joy and happiness arise easily, from your recognition of all the positive elements available right now. –Thich Nhat Hahn

 

22 thoughts on “No Mud, No Lotus: My Battle with Stage IV Lung Cancer

  1. Gary Reinl

    Josh, You stated that you were “…not sure if you would win or lose.” My opinion: you already won! You are a true champion. It is a honor to know you. I will (in accordance with my religious beliefs) pray for you.
    Wishing peace to you and your family.

    Gary Reinl

    Reply
  2. Lupe Peters

    Josh, I had no idea you were going through this. I had my own bout with cancer 2 years ago. Although it was not as serious as yours is, I can understand your take on how to deal with it. Accepting it, staying positive, and staying hopeful are the best things you can do in order to cope. Having the support of your loved ones is a tremendous help. I’m rooting for you! Stay strong and keep on spreading your knowledge. You are an amazing teacher indeed.

    Reply
  3. Adam Schreiber

    Thanks for sharing Josh. Having worked with many cancer patients, and also having seen friends and family diagnosed with different cancers, I have observed a wide range of emotional and philosophical responses to dealing with the disease. I really appreciate your positivity and acceptance. Take care and good luck.

    Reply
  4. marcie

    thank you for sharing, my mother recently suffered a 2nd battle with cancer and I firmly believe her positive outlook and willingness to accept pain in many forms is an inevitable part of being ALIVE!! She met it head on and has had a successful recovery.
    i wish you a continued positive outlook and ongoing health.

    Reply
  5. Kathleen Dugan

    I am so sorry to hear this news. I don’t know you, of course, but I do enjoy your posts and this site. I am glad you shared your news with us. I believe in the power of community. I’ve always liked Eckhart Tolle, he’s helped me a lot through life’s struggles.
    Peace be with you

    Reply
  6. Marsha Cain

    Josh I heard about this immunotherapy on Sunday Morning last Sunday and was amazed at the incredible reaserch. Know that you are doing EVERYTHING right and that is all you can do. You are a hero to us all though you may not feel that way all the time. We are all praying for you all the time in our own ways. We love you and your family. Stay as positive as you can whenever you can. When you get down just ride it out as best you can. Know that we are allotted a block of time in this life and that is all the time any of us have anyway, but we have to keep trying everyday to go on, to overcome until whenever our ends may be. You are one of the strongest warriors I have ever known. May you feel blessed everyday in some way.

    Reply
  7. Jay Barss

    Josh, your attitude and outlook inspire me everyday. Keep looking at what is right in front of you and push on for who and what you love. You are in our hearts from a far.

    Reply
  8. John Malinowski

    Josh,
    I just found out about your diagnosis. I know you are a strong person and will fight this with everything you have. I also know that Shagra is doing everything she can giving you the support you need on those tough days. I will be praying for you and your family! I know you are well versed in the benefits of exercise and hope you are keeping up with whatever you can handle from day to day. I have been working for a cancer center for the past 2 1/2 years developing a cancer rehab program and teaching fitness classes. You know the physical and psychological benefits of exercise remain essentially the same and may even help reduce chances of cardiotoxicity. I know your love of your family and passion for the sports medicine and fitness will help you remain as active as you can. I look forward to reading your subsequent posts for a long time to come!!

    Reply
  9. Kristin W

    Josh, Thank you so much for sharing your journey. I’ve been following your posts for a couple of years now and always enjoyed the posts themselves and the spirit that glowed behind them.

    Sending love and prayers your way.

    Reply
  10. Anne Valta

    So sorry Josh!
    This seems the be the “theme” for the last 12 months or so. I lost a good friend, a personal trainer and a competitive rower, last year to this exact same thing. I also had two other friends diagnosed with cancer last year. Everyone was healthy, relatively young.

    I took this all to heart and decided that for what ever I do in life going forward, I’ll go for it fully and with no regrets. The fact that I’m in great shape, eat well, sleep well, seemingly live a healthy life doesn’t guarantee anything. It can all be taken away in a second.
    Stay strong and remember all the great things you have and all the beautiful things you have accomplished in life.
    Cheers, Anne

    Reply
  11. Marti

    Dear Josh, I had no clue you were going through all that struggle. Anyway, you are a winner. You have done a lot to help improve the health of your fellow humans. We humans managed to do a lot of harm to ourselves. I will contact you via email, ASAP. In the meantime, allow me to share with you and those who have been touched by you, what I have discovered and gave me a better sense of belonging: http://www.theosophical.ca/books/AncientEgyptTheLightOfTheWorld_GMassey.pdf; http://www.duboislc.org/sites/default/files/pdf/books/OsirianLegend.pdf. If you have enough time and energy, read these two outstanding work, as they will enrich your soul. I will be with you all along, through our spiritual connections. Be stronger, my bro. With Love, Marti

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *