Choosing to LIVE with Lung Cancer

January 22nd, 2014 - by Chip Kennett

October 26, 2012.  I was a 31 year-old father of a wonderful two year-old boy named Joe and my wife, Sheila, was 35 weeks pregnant with our baby girl, Crosby, when I was told I had Stage IV lung cancer.

Prior to my diagnosis, by all accounts, I was considered to be healthy.  Earlier in the year, I had received a clean bill of health from my general practitioner at the time of my annual physical and had recently competed in my second “Tough Mudder” of the year. “Tough Mudder” events are hardcore obstacle courses that also raise money for The Wounded Warrior Project.

Team KennettThere was just that nagging, blurry spot in my right eye that showed up and wouldn’t go away.  Since it had been a couple of years since my last eye exam, I scheduled an appointment with my eye doctor, who suspected a detached retina.   After seeing several eye specialists and undergoing a series of tests, I was told I potentially had a melanoma in my eye, but it’s extremely rare for cancer to originate in an eye.   Tumors in the eye are most likely a metastasis, so it was recommended I schedule an MRI and PET scan through my general practitioner.

That series of events led my wife and me back to the same doctor’s office, where just a few months earlier I had passed my annual physical with flying colors, where we were told the results of the PET scan were “all lit up,” and that I had “cancer everywhere”— in both of my lungs, liver, lymph nodes, and bones, plus my right eye.   A week later, a biopsy revealed I had non-smokers’, non-small cell lung cancer.  In just three and a half weeks, I went from seeing a blurry spot to learning I was ALK+.

Soon thereafter, I started taking the ALK inhibitor, Crizotinib (or Xalkori.)  I immediately started to respond to the drug–my vision improved, and I was back to running within a few weeks.  Unfortunately, after only three short months, the efficacy of the Crizotinib had worn off, and I found myself in the ICU with a pericardial effusion and pleural effusions in both lungs.

The first day of my week spent in the hospital triggered the 30-day “wash out” period I had to undergo while my team of oncologists searched for a clinical trial I might qualify for, and would be close to home base and most effective in keeping the fires inside of my body contained.  Knowing I had a very aggressive form of cancer and having to be chemo-free for 30 days was an extremely difficult time, but thankfully, we were able to locate and qualify for a clinical trial for a second generation ALK inhibitor in the drug expansion phase, LDK368, which I am currently still on.

Despite the events of the last 14 months, Sheila and I consider ourselves to be so blessed.  Blessed to have a family doctor we already knew and trusted implicitly, and who was very aggressive in assisting and moving us through those first few weeks. She is very frank, yet warm, and has had the misfortune of delivering some of the toughest news to us.

In fact, I have been very fortunate to have amazing doctors throughout this entire process and believe having a good relationship with your doctor is a crucial component to receiving the best care. You have to be your own biggest advocate. Make your case personal.  Get your oncologist and their support staff invested in your life.  Learn the intricacies of your health insurance’s summary of benefits. If you aren’t comfortable with the care you are receiving, figure out a way to change it. When it comes to your health and your life, do not be afraid to ask as many questions as needed about your treatment options until you fully understand and feel comfortable with them.

Effective treatment and professional care are only two parts, albeit essential ones, to successfully battling this terrible disease.  I have learned having a solid base of emotional support is also important.  My wife and children provide me with the strength and motivation I need on a daily basis. They propel me to keep moving forward, even when it is tough.  No matter how poorly I may feel some days, my day is immediately brightened and my worries washed away – if only in that moment – when one of my kids is in my arms.  My family keeps me present and engaged and constantly reminds me this life is exactly what I am fighting so hard to preserve.

I also started going to see a therapist, and I would recommend this to anyone else.  The birth of my son in 2009 was a magical time for Sheila and me when our lives were so full of joy and anticipation of the years ahead, but the birth of my daughter brought on an entirely different set of emotions.  She was born in the same hospital where just a month earlier, I had my scans performed and where a piece of bone was removed from my hip for my biopsy.

I was obviously grateful she was healthy–she was my little girl–but I started to ask questions, like what had she done to deserve a Dad who was going to need a miracle just to live long enough for her to remember me?  Did all of these other dads of newborns in the maternity ward take for granted the fact that they were most likely going to walk their daughter down the aisle one day?  I was angry.  Talking to my therapist helped me move past the questions that had no answers, let go of the anger that was a waste of my time and energy, and focus on living in the present and to make the most out of every day I have left on this earth, no matter how short or long that time may be.  And let me be clear, I truly believe I have many, many more good days ahead of me.

Whenever I am having a bad day, because, let’s face it, they will always exist, I have just learned to put my head down and do whatever needs to be done to keep moving the ball down the field, because time spent feeling sorry for myself is not going to help anyone.  As long as I keep doing that, I know this disease cannot stop me.

Despite this diagnosis and prognosis, Sheila and I know we are blessed.  We are blessed to have a strong marriage and two amazing, healthy kids, and as long as I still feel like a husband and father, I feel hopeful.

Sheila Kennett writes about the family’s choice to LIVE with lung cancer on the blog, “Team Kennett: A Playbook for Living

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13 Responses to “Choosing to LIVE with Lung Cancer”

  1. Jo Silva says:

    This was very strange for me to read this… as it is like a mirror for me… I was 37 weeks pregnant with our 2nd daughter when my husband was diagnosed with stage 4 lung cancer (both lungs, nodes, bones,and several muscle mets in thigh, neck and triceps) he also is ALK positive and he also had a shorter time ton Xalkori than expected – 6-7 months. Similarly he has suffered with pleural effusions and and found himself in CCU with cardiac effusions and tamponade throughout his illness. He is currently on Chugai/Roche Alectinib trial and doing well again. Wishing your family the best, J

  2. Jay silva says:

    What a journey ! This send goose bumps all over my spine. To read all of these it’s like looking into a mirror, the exactness of your story is just like ours here in Brisbane, Australia. I hope and continue to pray we keep reading these updates about your journey. I am humbledand at my knees for each night when I out my children to bed and go to work and say hi to my friends . With my wife beside me everything is possible. Let’s continue to live by surviving !

  3. Dan Jones says:

    You are an inspiration to so many and have faced your illness with incredible courage. Know that you are constantly in our thoughts and prayers. Miracles do happen, and we will continue to pray for miracles in your life.
    We are proud to know you.
    Dan and Trina

  4. Azor says:

    I recently watched this documentary that I believe everyone touched by cancer should watch. I have a PhD in Physiology and the information in this documentary is real including FDA’s attempts to shut this doctor down. Please watch and spread this information. Perhaps if I had known about this therapy, my friend would not have died of a brain tumor at 19.

  5. Bill Jones says:

    Chip: Your description of the last 12 months was very informative and well done. We have watched you grow from birth to being a wonderful son, husband, Dad and friend. Your attitude is awesome and let the professionals do their job. The Kennetts are always in our prayers. Give our love to Sheila, Joe and Crosby. Love ya, Bill

  6. Larkin Warren says:

    Such a generous piece of writing, Chip. So much of what you say is quintessentially human—anger, sorrow, frustration, weariness, a little comedy here and there; the annoyances and joys of just being on the planet; a great love and a deep capacity for hope no matter how often it gets dented. The bonus for us out here is your clarity with the science—your docs’ explanations to you, yours to us. I don’t think previous generations were given these opportunities by their medical professionals—to ask questions, get answers, insist on candor, and to be partners in the journey, using knowledge to build and rebuild the “new normal.” Your writing echos that of Lisa Bonchek Adams, diagnosed six years ago, who blogs about her family, her treatments, carpooling the kids, the change in seasons, and the constant reversals and shifts of each day. Sometimes she’s wry; other times, she sees a bird or a sunrise, and she’s optimistic; and sometimes she’s just sick of the whole mess and wishes everybody would leave her alone. She’s fierce, and worth a read-—one of those, “Hey, I could probably have a beer with her!” people.
    Light and love surround you all, plus lots of good nights’ sleep, and a little Pappy Van Winkle always within arm’s reach. larkin

  7. Katie Warren-McDowell says:

    Chip ,
    Hello from California from your Auntie Katie. Ever since you brightened the planet with your zest for life we have all been blessed. While I have been far away watching my own boys ( 30,28,26,24 now) grow I have had hundreds of updates from Larkin and your folks. These update initially crushed me and to bed I went with a Warren migraine .
    However, I hadn’t read the attachment that you wrote or then gone ahead to read some of Sheila’s blog. Dear Chip, you have a gift of a beautiful family not just your dear family of 4, but people in “your corner” . Thank you for your honest words and sharing this journey. I know first hand of the strength that you have from both sides Landroche -Kennett is like iron and steel. But kindness and love are part of that gene pool too and all of those “parts of you ” will continue to guide you. Plus the love and faith of a good woman , your ” true north” . I honor you both today and wish and pray for continued strength and grace as you share this with the world , both close to you and far away. With affection to all , Katie ( your first baby sitter) give mom andB hugs

  8. Ida Gray says:

    Chip, wishing you many years of cancer free and these drugs keep the lung cancer away, I would liked to asked you the eye that was blurry did you have a retina detachment, I had lung cancer carcinoma but, lucky stage I , I had cyber radiation and my last three scans were cleared in my right lung but, four yrs before in my right eye I lost almost all vision Down too only 5 percent vision in my eye , I had the retina detachment, so wondered if that had anything to do with my vision loss. Now, I am battling HepC , when I was thirty I got hit by a car and loss my right leg , when they blood transfusions the blood was bad, I am going in tonight for a MRI to checked my liver I have modules on my liver liked I do on my lung, praying I do not gave any cancer on my liver.

  9. Ida Gray says:

    Chip, wishing you many years of cancer free and these drugs keep the lung cancer away, I would liked to asked you the eye that was blurry did you have a retina detachment, I had lung cancer carcinoma but, lucky stage I , I had cyber radiation and my last three scans were cleared in my right lung but, four yrs before in my right eye I lost almost all vision Down too only 5 percent vision in my eye , I had the retina detachment, so wondered if that had anything to do with my vision loss. Now, I am battling HepC , when I was thirty I got hit by a car and loss my right leg , when they blood transfusions the blood was bad, I am going in tonight for a MRI to checked my liver I have nodules on my liver liked I do on my lung, praying I do not gave any cancer on my liver.

  10. meg rogers says:

    Peace to you and your beautiful family.Your story is similar to ours, with my husband diagnosed at 38 and fully “cured” for nearly 6 years before lung cancer took his life last year. You demonstrate all the things necessary to make your journey (and it is a journey)I will pray for your miraculous physical healing, because it is possible. But even though these are tough times for your wife and children, continue your courageous choice to make every day count.Our children were so blessed(sounds strange) by my husband’s illness, as will your children. Every moment with you is always a gift, but your cancer gives a clarity to those moments others do not know. Keep the faith!

  11. Thank you for sharing Chip it is amazing that your able to tell your story to complete strangers but perhaps, it is therapeutic in nature for you. Whatever the case may be I really took a lot out of what you were saying so thank you again. I have stage 4 Lung cancer since it’s discovery in 2008. I’ve had a lobectomy (left upper)I’ve also had 4 P/E’s that nearly killed me, I’ve had a heart attack in 2010 that required a stent because of a 100% blockage of my LAD, I’ve had a medial thyroplasty as a result of the radiation I received that paralyzed my left vocal chord, I’ve had a second lung surgery this time on the right side in which they removed a section of that lung, I’ve had radiation & chemotherapy twice in which I’m undergoing every 4 weeks this 2nd time around and I’ve had multiple non-cancer related problems such as gout,Diverticulitis/Diverticulosis, Kidney Stones, Both Achilles Tendons damaged,etc, etc…. but I continue to function as much as I have to such as grocery’s, car issues, etc. I walk every day I can weather permitting as this is part of my therapy to wellness. I got a rescue dog several months ago (Jack Russell) and she has been a joy and a pleasure to have as it is mutually beneficial for us both. I live by myself and was forced to retire from the Boston Police Department because of all the health issues that I was carrying around so my pension is barely enough to take care of my basic needs but even though that is my situation I still remain positive even though I’m taking Chemotherapy every 3 to 4 weeks which seems to be control the growth of the cancer. I have the type that there is no cure for but as a result of a biopsy they’ve determined it was a mutation therefore this therapy that I’m involved in seems to be keeping the wolf from the door. Sorry for rambling but maybe this info such as yours was will be helpful to another person that may be able to identify with. Some lifetime dreams of mine after retiring are no longer possible but I do make do with what I have……Thanks again for the blog and good luck & prayers going your way Chip…..

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