“You have cancer” It was January 24, 2017. I was devastated. Suddenly only three things came to mind: my family, bills, and death. When I had heard about cancer before, it was about a relative, a friend, or a stranger, mostly through media.
The diagnosis hit me hard.
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I had moved to Cape Town, South Africa with my family just five months before. Now, sitting in the doctor’s office, I was paralyzed. At once everything felt impossible, scary, dark, hopeless. I held back my tears, instinctively feeling like I needed to stay strong, for my wife who sat beside me fighting her own tears. I had this unwritten rule that I have to be strong for her and the children.
Once home, I crawled into bed and the tears just came. I was blindsided. I had no tools to help me cope. I was powerless. I assumed I had been given a death sentence. There are few occasions in a man’s life when he admits to weeping like a child.
On this one, I own up. I cannot quite describe what it is that horrified me most. I know though, there is a certain chatter in my house, the nurturing of family and all the responsibilities that come with it, it felt like I was bailing out on my gang. My wife, my two kids, who would care for them?
On the second day, while recovering from shock, I definitely took on God, “why me?”. My inner gut kept nudging me to hold my fort. I simply was not going to let this consume me. I nicknamed my cancer “The Beast” because of its ugliness and pain, and the fear around it. I wondered how I got there.
I started sharing my personal chronicles with friends, family and strangers publicly on social media using #TheBeastMustFall. I had been hit hard by life and had nothing more to be afraid of! Cancer had thrown me into the unknown world without a roadmap.
Many things can kill you. But if there is a death that I refuse to die, it is the one instigated by fear and doubt. I suddenly realized I could let this thing kill me, or I could change my attitude and rise above it. Going through life with a negative attitude is like stepping on a ladder without steps. Hope was my step. I whipped on hope so hard that it became a daily mantra. It was the fuel that I needed to scale up.
I forgot all the good things I had enjoyed in life, beautiful places I visited, amazing people I had met, and incredible pictures I had captured in life as a professional photographer.
Having my wife Ellen by my side helped me tremendously. She started researching online to learn more about Esophageal cancer, treatment, and prognosis, something I was too afraid to do. She made all the appointments and kept our young children, aged 2 1/2 and 5, going about their normal routine, while gently sharing with them age-appropriate information about my illness.
We were referred to a surgeon in Cape Town who, after looking at my CT scans, decided that we should meet the oncologist and start with chemotherapy and radiation before having an esophagectomy.
This is a standard procedure for most people diagnosed with esophageal squamous cell carcinoma, as it is rare to find this disease in the earliest stages when an operation can be performed right away to remove a tumour. Radiation and chemotherapy shrink a tumour before surgery, in hopes that all of the cancer cells can be killed and removed from the body.
As I began my treatment, I was warned of the many things that might happen. I might lose my hair, I might turn dark (I am already dark—I couldn’t imagine!), and my fingernails might turn black and may look bruised as a result of chemotherapy. I was told I would likely experience nausea and vomiting, loss of appetite, constipation, infection, and anaemia.
I was given medicine to help me deal with some of the side-effects should I get them. What I was not told was that my will to fight and keep fighting and a positive attitude were probably the most powerful tools I could have to get me through the storm.
Anyone who knows me knows I am always smiling. I wear my smile genuinely and with pride. Every day when I wake up I look at the guy staring back at me in the mirror and smile back. This is my daily gratitude. Once I started treatment, I was afraid to look in the mirror. I was afraid of stepping on our bathroom scale.
During my fourth week of chemotherapy and radiation, I experienced terrible side effects, having lost my appetite, significant weight, and the will to fight. I ended up admitted to hospital. This was a major setback.
Admitted to get control of the pain and adequate nourishment, I found myself in one of the best hospitals receiving terrible care, in part because of the subpar nursing staff, and in part because of xenophobia and racism that unfortunately exists throughout South Africa, and particularly in Cape Town.
Failure to get me the right pain medication, delays getting nourishment, poor guidance about medication side effects that led to my falling in the bathroom, and on it went. The positive attitude that had been carrying me through failed me those two weeks I was admitted.
Despite many conversations with doctors, nurses, dietitians, and a multitude of dining staff explaining what I could and couldn’t eat given my condition (difficulty and irritation when swallowing), they never managed to get it right. I was given spicy food and food that was too solid.
I was already in endless pain due to irritated oral tissue, side effects from the radiation. We filled out and signed menus every morning, but in most cases, I was served meals that I did not order and could not eat. One day I was served the same food three times in row lunch, dinner and lunch for the following day.
My wife starting bringing food from home. Frustrations mounting, I told my wife I needed to get discharged and go back to the U.S. for the surgery. I needed better health care, I needed to focus on fighting cancer rather than fighting for my rights as a patient.
It is one thing to hold your forte with authority and purpose, it is another for people to question that authority on account of your skin colour. Racism is dark in-itself. When you are fighting your life’s battle, the last thing you expect from any mortal carrying a life like yours is to be discriminated upon on account of your colour.
The irony of it all is that I was choosing to be treated in America where I felt, I could get better treatment. South Africa must confront this monster.
Finally, I was discharged, and again it was my wife who researched and found a renowned thoracic surgeon at Johns Hopkins Hospital in Baltimore, Maryland (USA) who agreed to see me. I travelled to the U.S., leaving my wife and small boys behind.
A dear friend travelled across the country to accompany me to the initial appointment, and I was relieved to hear I was a good candidate for surgery. I spend the next month rebuilding my strength with the help of friends and family who visited and supplied me with food. Our dear Friend Sarah Morrison, who was too kind and offered her home, we are forever grateful for our friendship.
The traditional Kenyan food that my friends Melanie, Lena, Maggie, Maureen, Fred, Trish and Liz cooked and delivered to my hotel before surgery enabled me to gain the strength I
needed to endure a massive surgery.
My wife and children arrived a week before my scheduled surgery, and my in-laws and daughter came to take the boys back to their house while I recovered. An unforeseen delay resulted in my wife and I having an unexpected “honeymoon” while we awaited surgery.
Dr. Richard Battafarano and his amazing team of nurses, technicians and physicians gave me confidence, and they didn’t disappoint. Recovery was hard, but the team walked with me every step of the way, as did friends and family who came to visit during my two-week hospital stay and six-week recovery.
My gratitude extends to so many people who saw me through this ordeal. Oh my, the list is endless. A prayer shawl knitted by women at my mother-in-law’s synagogue kept me warm and enveloped in love.
Special visits by family and friends, including high school friends, phone calls from my best friends, Faith, Captain Koki, Wairimu, Grace, and a “Whatsapp cabinet”–a special group I formed to inform people of my progress as I went through surgery and recovery…. This endless outpouring love from all over the world kept me in the game.
Of Unsolicited Advice
When going through cancer treatment, a lot of things happen and many things change very quickly. Some friends and relatives step up to support you in any way they can. Others really don’t know what to do. Many withdraw, and some offer advice that is unwanted, uninformed, and unhelpful. Reality sets in and if you can’t muster a positive attitude, you deteriorate.
Truth is that it takes a very small gesture to give hope or positively touch someone fighting cancer. A short text, card, call or visit to let them know you’re thinking of them means a lot.
In my case, I told the world the very day I was diagnosed, something that for some people would be unthinkable. I didn’t really care what people would say or how they would react, but I knew that I needed support. I didn’t know how many people would stand by me or that some of my biggest supporters would be people I had never met.
I refer to them as my angels, and I found them everywhere! I started to acknowledge them on social media, noting “angels everywhere” as my rallying cry along with #TheBeastMustFall.” These selfless and kind people define love for me. They will forever remind me of my cancer journey, and I am forever grateful for their love and kindness.
I am now cancer free, and I am willing to let go of the fear of illness and the fear of the unknown. I want to share my story with other countless silent fighters and families that are about to give up in their fight against cancer or other struggles.
Having my wife and family by my side was priceless. The “angels everywhere” who gave me hope and loved me and gave me food and walked with me in spirit, whether in person or through social media, gave me wings when mine were broken. I wish I could write their names here, but the list is long.
If Today Were My Last
I meditate on this as I clear my mind and focus on positive things. “If today was my last day on earth, how would I want to live it?” How would I want to treat others? It is one year since a gastroenterologist shocked me with the most horrible news, “You have CANCER!” I am still here today. I was given another chance at life, perhaps to inspire countless other fighters battling with different types of diseases or other challenges, to inspire others who are at a crossroad.
Last year does not define me, but it has changed me. I know all too well that some people have not lived to tell their stories.
2017 was the year I was down, the year I was very afraid and was fighting the mother of all battles. With each pain I got stronger, with each stumble I rediscovered my self, I stood the test of my challenging moments, my family and friends with new friends, whom I never knew before, kept me from falling and gave me wings.
I have a story today because I am a living miracle, I am turning my scars into stars, my moments with cancer gave me strength and a passion to spread the wings of love and give hope to others.
The most valuable currency in life is not fat bank accounts but the effect we have on others, people whose hearts we touch, the people whose challenges we shared, the tears we cried together and the shoulders we offered to others.