Stuart Scott, ESPN Sportscenter Anchor, said it right…”When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live.” Stuart has been battling Cancer since 2007. His speech at the ESPY’s resonated with me on many levels, inspired me and moved me………Thanks Stu.
People have asked how I am doing these past few months. It’s been up and down…..bottom line is cancer has reared its ugly head again but we have a plan and I’m ready for the next battle. This will be my ‘Empire Strikes Back’ blog post, similar to the trilogy, a bit darker than other episodes.
My battle officially started about 8 months ago, but I’ve been battling long before that and what I remind myself is that in this life there will be many victories won and lost. I’m learning that it’s how you live through these times is what will matter most. So is true of life, we’re all battling something, big or small, every day. And if we are not, let’s be thankful. We will all face death at some point, it’s what you do on this journey that determines how you are living or how you are dying.
Time To Fight, Again
When I found out my cancer was coming back, my doctor from Memorial Sloan Kettering so aptly stated that this will be a marathon not a sprint. I’ve run 2 marathons in my life inspired by my dad, 2 triathlons inspired by my brother and when I was a kid my mom would chase me around the house when I did not listen to her. I’m used to running. My father, the strongest and most disciplined man that I have ever known, has run 6 days a week through extremes of sun, sleet and snow for almost 30 years, no fail. I have watched him train and run in 13 marathons, finishing 26.2 miles in each race, his last one running side by side with me. So maybe I have an edge…..
Thus far my battle with cancer has been one of extremes. I landed quickly on a very serious diagnosis of Stage 4 Lung Cancer in January of 2014. Not a smoker, never having been exposed to any extreme environmental conditions or having any strong genetic link to lung cancer in my family, we still do not know why. What we did learn and could be a clue is that I have a genetic mutation, EGFR, which is a double edged sword in this story. The mutation is driving my cancer but it also has brought me alternate treatment options and experimental drugs while not a cure, have proven effective for me so far as well as with other patients that have this gene. The drug I have been on, is a chemotherapy drug called Tarceva, causes side effects like fatigue, nausea, skin and hair disorientation, it’s no picnic but works well and is not as much of the lifestyle hit that chemo brings. And when these experimental drugs work on patients, they can work really well. It worked so well for me, that the severe coughing and shortness of breath I had experienced in December, January and February were gone by late March enabling me to go back to work and resume most of my normal life. It worked so well that in late April, I received a negative pet scan showing no signs of cancer. Together we (my family, my friends, me, my doctors, God, The Universe, the drug…..not necessarily in this order) kicked my cancer’s ass and it gave me some time to breathe.
But now the drug has stopped working, much sooner than we thought. We were warned by our doctors that Tarceva was not a cure, that the average span of time that the drug worked on patients was 12-18 months. I got about 6 months, thank you Tarceva, it was short yet sweet.
Heads Under Water, But I’m Breathing Fine
Lyric above is from a John Legend song that a recent ex-girlfriend (yeah I’m dating again, that’s another blog and it’s good) tried to convince me was a song I’d like. I heard it again today, good song, good lyrics and that specific line stuck with me figuratively and literally.
We started seeing signs of progression in June. I have weekly doctor visits and blood tests and when my CEA tracker, a tumor marker in your blood, started rising in May, my doctor became worried. Here we go again…….Frequent doctor visits, cat scans, pet scans, biopsies, interview’s for clinical trials, support groups, trips to the City of Hope Hospital in LA, Memorial Sloan Kettering in NY, until it was determined that we have to switch treatments. I’ve started coughing again and my shortness of breath is back. My breathing capacity was measured at 31% just last week, back to the worst levels we saw in January. For some reason though, I have it under control. It’s not that bad, I still walk my dog, I pop about 5-6 different pills a day that alleviate some of the symptoms and I am working away, hanging out with my friends, traveling for work and leisure. Living.
I’m fine but the reality is that it’s getting worse. Luckily, I have a smart team of doctors who have a plan and the most amazing family and friends that continue to be my rock. My spirit has been shaken but not stirred and yes, I have begun to reconnect with something beyond me, something above me that gives me strength and determination to continue this fight.
So what’s next? I have 2 options, clinical trial or chemotherapy. The clinical trial is called CO-1986 or the Clovis Drug and is available for patients who have the EGFR mutation and a new resistance mutation called T-790M. Luckily they have this trial available here in Los Angeles at UCLA and I visited with them about a month ago to interview, get me processed through the system and after one failed biopsy, had another one a couple of weeks ago where they took samples from my lung to test if I was a genetic match. There is about a 50% chance that I am a match for this new drug. Want more some more percentages and odds? Well, I’ve got em! If I qualify for this drug, it works in about 60% of patients, which is very good in this world. There are also side effects, 1 in 3 patients experience diabetic like symptoms. New picnic. We’ll know today if I am a match, if I am not, then we start chemotherapy this Friday. I am ready for either.
Last week, I took a tour of the chemo ward in my doctor’s office. Now let me tell you this was a barrel of laughs, good times! My doctor has a large office that circles around, I’ve glanced that way before, have seen mostly older people twice my age sitting down, attached to contraptions pumping something into their arms. Looking mostly relaxed, reading, sleeping. Very strange, something out of a movie, like people waiting to die. It reminded me of what purgatory might look like or Florida (I just insulted half my family).
If I can’t make you laugh here than I lose and the terrorists win. Truth is, I wish I never saw what I saw and I am lucky that I have not experienced chemo yet. What these people are going through, what I am going through. It’s not fair, no one deserves it. But like I said, we all have our battles, and I was meant to fight this one.
I strive to find the silver lining. If I win this next battle through a clinical trial or chemotherapy, I can continue the fight and start winning the war in this marathon. It’s a long road, it’s a new road, but it’s not my only road.
Cancer is not my life, it’s a part of my life that I have to deal with right now and whatever the outcome, like Stu, I will live, live, live, and fight like hell. Like Stu, I will not give up and if I ever feel like giving up, I will reach out to my friends and family and forces beyond me to help lift me up. Like Stu, I will get tired and I will need help. And when I get too tired to fight, I will lay down and rest and let someone else fight for me.
I Got This.
Stu at the ESPY’s…..Watch This