“You Beat Cancer By How You Live”

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.

Next

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

 

 

I got this 2

23 comments

  1. My thoughts and prayers are with you… There is no doubt in my mind that you will get this all under control and live a long life!!! Xoxo

  2. Dear Alex,      You  are wonderfully brave, and are getting the most out of each day, one day at a time.  You are an inspiration to all of your family and friends and you are always in my heart and my prayers.  You have so many gifts, one of which is writing so beautifully.  We are all experiencing your battle through you, and know that you will find the strength to do whatever needs to be done.  I’m always in touch with mom.  All our love and prayers are sent to you. Cousin, Linda

  3. The bar below your post suggests one can “like” it. A bit odd to “like” an essay as serious as this is and yet, I do. I love it.

    You are tough. You are prepared. You got this!

  4. So very proud of how you are living and running the marathon–with dignity, great perspective, and humor. We are all here cheering you on and ready to run along side you. Honored to be wearing the same wrist band. Sending love and positive energy your way. We love you! Love, the Gabster and your sis in law

  5. You need to complete the Stuart Scott analogy and get a girlfriend half your age. I support that fully.

    Kidding aside, rooting for you man.

    Rich

    Sent from my mobile device.

    >

    1. Hi Alex, you are an inspiration to so many people including myself. Yes, we must take this life we have day by day and live it the best we can and that is what you are doing. You have a bright spirit and that will take you far. Love, Linda G.

  6. good luck alex! please keep us posted as to the results of whether or not you can participate in the clinical trial. We are thinking good thoughts and love you!!!! The whole Toplitzky clan, Alex, and Smith too!

  7. Alex, while I’d love to say something beautiful and poignant here, it would fall far short of your eloquence. Your words and fight have inspired me and I am wholeheartedly in your corner! –even though you used to threaten to kick my ass ;). -Love you bro (and your bro). We all got this.

  8. Alex, Mickey, Hallies Dad here. I have been following your tough journey. At 66 years old here, reading your so tough but inspirational acts of courage, I have actually grown and learned from you, ya young whippersnapper! Lol. In all seriousness, knowing you, ( and Barney too) has enriched my own and my entire families lives. You are living your life on your own terms. You are just one terrific man!

  9. Alex, I thought upon first read of this post this morning how great of a writer you are and how well you put your perspective on paper. Little did I know that reading the post aloud to Anne when I got home would exponentially raise the impact of your writing, we both were moved. Celebrating life is what you are doing best, we all stand behind you and follow your courageous leadership. I am equally moved by your essay here as I was by Stu’s speech during the ESPY’s, keep fighting brother! Much love from Laguna. -Marc, Anne, Lennon (& Mo)

    PS. Rich Kim’s post was spot on

  10. Life isn’t exactly as one plans it. At some point we all learn that. How you’ve responded to this nightmare encourages everyone who knows you. I’ll touch base with you privately to remind you how much you’re loved.

  11. Alex you are amazing, I have no words…you make me laugh, you make me cry. You are ALWAYS in my thoughts and prayers. #YouGotThis xoxo

  12. Alex, all I can say is you are awesome! You are an inspiration. To read your words which are so eloquently written makes me want to come to CA to just give you a hug. I know you got this. Keep fighting my brother, I will only have positive thoughts for you each and every day!!!

  13. I love your spirit and fight my brother….you absolutely “Got This”!!!!!! My thoughts and prayers are always with you my friend!

  14. Listen Hanan… Can you please stop writing these epic blog posts so well? It’s really making us people who write for a living look bad.
    My mom and dad both kicked cancer’s ass and you are next.
    I have no doubt you have years of Tinder hookups to come.

  15. Hey Alex … Thanks for the update, and I am sure this is just a bump in the road to your fully being on the mend. Hang tough my brother, you got this. Coach Daly!

  16. I am exactly where you are. Some rough days bu I like your thought pn living. If we just get from one drug to the next. Take care. sallie

  17. Hi Alex, just saw a story they did on you on ACCESS TV here on the east coast not far from Boston. My Dad was diagnosed 7 yrs ago with the very same, later they learned it was the genetic mutation. At the time Dad was diagnosed in 2007 they called it non-small cell lung cancer. We were shaken and shocked with the diagnosis of 4th stage inoperable lung cancer and floored when the doctor gave Dad 3 months to live if he “did nothing.” Doing nothing wasn’t an option. Dad was the healthiest 60 yr old I’d ever known…never smoked and always took good care of himself. He’d lived a great life already, but expected at least another 20 yrs. His parents outlived him. Unfortunately, after quite a battle and some ups and downs with treatments, brain surgery, and other bumps along the way…he got a fairly good 22 months and passed unexpectedly and quite suddenly at the age of 63. His father died at age 88 six months later, after a brief battle with Alzheimer’s. His mother is still healthy and feisty about to turn 91! Anyway, I’ve just subscribed to follow your blog and plan to read the other posts. I look forward to reading about your “adventure” through this and will pray for you and cheer for you as well. Knowing you have the support you do and a bright future with the new drugs and treatments out there warms my heart to know others will get more time. 22 months wasn’t enough, but we are grateful for every minute we got. “You Got This” and thanks for sharing.

  18. Hi Alex, I was diagnosed at 39, stage 1A back in Oct 2013. Like you, I wasn’t a smoker nor did I ever live with a smoker or in such conditions. Was athletic from the moment I was able to walk and kept a healthy diet – of course, with the occasional Hagen Daaz with M&M’s. 🙂
    Similar to you I had a gene mutation. Nov 2013 I had a lingulectomy and about 7 lymph nodes removed. Thankfully no further treatment was required, in the meantime I have check ups and Xrays/CT scans every 6 months.
    Wanted to share my story with you and many others and I hope it serves as additional inspiration and know that every night before I put my girls to sleep we pray for you and everyone who is faced with this disease.
    Very proud of you and please, keep us posted!
    Johanna

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