No Fear – One Year Later

A year ago this week, I wrote my first-ever blog post “Taking the Latest Treatment Plunge” while on a first-ever family ski vacation celebrating Eleni’s 4th birthday in Park City, UT.  It was a time period with a lot of unknowns. My maintenance chemo (5-FU + Avastin) was failing and I was entering 2015 with a lot of medical and treatment uncertainties while fighting against the fear of the unknown. Would I enter a clinical trial? Would I start harsher standard of care chemo? Would my cancer not respond to my next treatment as well? Were my days of “feeling good” numbered? This first post ended with the words: Live life always. No fear.

It was against that backdrop that we took our vacation – and against that backdrop we had a great time including a very meaningful first-ever ski down a 10,000 ft “real” mountain for me.  A skiing achievement separately matched by my then 7-year old daughter Amelie on the very same trip.

A year ago I wrote:

Although I have zero symptoms of cancer and feel 100% healthy, my lung tumors are slowly growing under standard chemo – i.e. they are not responding to treatment.

I … skied over to the almost empty ski lift going up to the summit. I got on an empty 6-person lift by myself…  I crossed my chest, took a deep breath, thought to myself “no fear” and pushed off the snow to begin the biggest ski run of my life. … It was one of the most exhilarating moments of my life, descending almost 3,000 ft down a mountain on my own. … Even at high speeds and concentration, the parallels with my cancer treatments did not mentally escape me as I barreled down the slope, barely in control of my own destiny, regardless of how hard I worked to gain that control.

Here is the photo I took last year after successfully racing down the mountain on my own, without fear:

IMG_5573

Fast Forward to January, 2016

12 months later, we just finished our second-ever ski vacation, this time to Mammoth, CA – a new family tradition.  As the march of time & milestones continues, this time we were celebrating Eleni’s 5th birthday as well as having a fun getaway with close friends before I returned to relatively harsh biweekly FOLFIRI chemotherapy.

We Were Planning on 2-4 Inches, Not a Blizzard

Last year in Utah, the weather had been serene.  The sun was shining brightly all of the days with the glistening & beautiful snow acting as an interesting external setting contrast to my internal worries. The weather forecast when we arrived in Mammoth this year said there would be 2-4 inches of snow the following day.  At dinner that night, our waiter asked if we were ready for the “approaching storm”.  Approaching storm??? I grew up on the shores of Lake Michigan and lived for five years in Buffalo, NY!  2-4 inches of snow counts as a “nice winter day” in those places. We mentioned the forecast to the waiter – he said, “oh that’s what they claimed before the last big storm – I think this one will be a lot bigger than that one…”

Confused Weatherman

We woke up the next morning to a new weather forecast.  Up to 20 inches of snow.  Wind gusts up to 100 mph on the peaks.

It reminded me of last January’s post where I ended my writing by making a positive forecast about planning to start an exciting clinical trial.  Instead, I was walloped just a few days later with an out-of-the-blue surprise melanoma diagnosis. Goodbye clinical trial. Hello worrisome forecast.  We hunkered down inside for Tuesday’s storm.

Waking up on Wednesday, the storm was continuing but diminished.  They forecast an additional 8-12 inches of snow but wind gusts on the peaks now down to at most 50 mph.  We decided to try for the slopes – keeping plans flexible dependent on the conditions as they developed.  Looking at the conditions, we decided that Eleni would stay home with Mom – 8-year old Amelie & I would go for it along with two close friends of ours.

Thriving in the Eye of a Storm

Going up the chairlift surrounded by swirling snow in the wind gusts – not riding up the mountain alone like last January but instead this time with my quickly growing-up daughter at my side – I started having doubts and actively thought that we were possibly biting off more than we could chew.  I wasn’t afraid but I was nervous… probably it would be best to ski the slopes once, call it a day & return the next day when it was forecast to be sunny.  The wind wasn’t a continuous gale but it was certainly gusting pretty ferociously.  The snow was falling in waves – not quite whiteout conditions but not that far off.

The four of us started down the mountain.  While skiing, I realized that yes even though the storm looked intimidating, once we were traveling down, both Amelie and I found ways to handle the challenge, surprising both of us.  At one point she lost a ski under feet of snow.  We found it & she didn’t give up.  As we slowly went down the mountain (being very safe & cautious in the conditions, not attempting to break any speed records!), we were surrounded by swirling snow but there was always a small pocket of good visibility surrounding us.  No we couldn’t see far but we could see near – and by focusing on our immediate surroundings, the problem of getting down the mountain safely became very tangible and doable.  The surrounding “big picture” storm wasn’t scary when we focused on our immediate here & now.

We not only made it down the mountain safely but we ended up going back up and doing it again.  And again.  And again. And… each time we became more confident and as my friend Leta says, we became less focused on “surviving” and more on “thriving”.  By the end of the next day (this time in the sun), we were starting to race down the mountain! Last year I felt a sense of accomplishment.  This year I had a blast.  Have you ever skied through 2 foot deep fresh powder drifts? I never had until this trip.  It is amazing!

No matter how scary or intimidating a big picture problem may seem, focusing on the here & now makes that recede into the periphery – allowing not only the achievement of minimal goals but before you realize it, also surpassing them in ways previously unimaginable.  Finding ways to thrive, not just survive.

Surviving & Thriving Together

Look back at the top of this post where I quoted my ski down the Utah mountain in 2015.  Did you notice how solitary it was?  I used the word “I” throughout the passage.  It was indeed a very solitary moment in my life. Me against the Utah mountain.  In my passage I paralleled it with my fight against my cancer.  This year, I skied the mountain not alone – but with Amelie and friends by my side, further deepening the experience.

I think last week’s Mammoth ski trip can also be paralleled in many ways to my cancer fight.  In even broader ways than I attempted to compare them last year.  In the past 12 months since that trip, I encountered many things in my “cancer life” but one of the greatest was becoming very actively involved in the CRC patient community.  Through that, I have joined the fight with countless CRC Brothers and Sisters. As I found with skiing with Amelie, this togetherness deepens the moments more than any solitary run is able.  I can’t thank my fellow CRC survivor community enough for being there with me!

Looking Forward to 2017

On this trip, Eleni celebrated her 5th birthday and Amelie was racing with me down a mountain – quite the achievement for both her and I. What more could a Dad ask for to see approaching 4 years into a currently incurable cancer diagnosis?  I predict on our next January 2017 ski trip, Eleni will be going down the mountain with us and Amelie will win the race against Dad 🙂

Exactly a year ago I was facing failed maintenance chemo and a very unsure year.  A full year later after a number of treatment changes, two lung RFA surgeries (causing one collapsed lung), two ER trips & a return to relatively harsh FOLFIRI chemo – here I was racing down the mountain along with my 8-year old daughter, both of us exhilarated in that moment by the challenges & successes of life.  Of life itself.

A lot happened in the 12 months following last year’s first blog post!  The sentiment contained within it continued and guided me to live without fear no matter what happened over the course of the year – but in other ways things changed: I enjoy a larger focus on the here & now regardless of the storm swirling around the periphery; I am less alone than ever before & my goal is not only to survive but to thrive.

As I closed my first blog post one year ago… Live life always. No fear.

11 Comments on “No Fear – One Year Later

  1. What a year! Happy first anniversary of the blog.
    Living with hope instead of fear is a powerful message and I thank you for sharing it with us!

    Liked by 1 person

  2. You are inspiring. Thank you for you post. I am just beginning my fight. Diagnosed back in August 2015 with stage 4 colon cancer totally inoperable and 2 years at most to live. Well in Nov 2015 I had to have a colon resection due to a blockage which shows my colon is now cancer free. Then a trip to a liver specialist surgical oncologist who said 3 months of chemo and then he is going to remove the right lobe of the liver as that is where all but 1 of the tumors are and do the RFA procedure to the tumor on the left lobe. Says there is a chance it will come back but we can treat that as it happens. Totally different prognosis than the first oncologist said. Had to wait to do the chemo till I healed from the colon surgery but I am getting the port put in and should start treatment by the end of Feb.

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    • Hi Darla – I didn’t come up with this phrase but I certainly strongly believe in it. You are a patient not a statistical median! Use stats to compare & decide with your MD between treatment options – other than that, I recommend ignoring them. Although there are no guarantees in life, I personally know numerous “incurable” Stage IV CRC patients way out past 2 years – getting there with a mixture of medical & surgical management of their disease. If the mets are appropriately located (as determined by a surgeon), chemo can even at times convert a Stage IV patient into surgically curable. I am glad your second medical opinion is giving you more treatment options! So please do not give up on Hope. Here is a story of a good friend of mine that has given ME a lot of hope in the past in terms of possible very long-term disease management, I hope it does the same for you: https://adventuresinlivingterminallyoptimistic.com/2015/08/18/lung-rfa-round-2-the-power-of-positive-role-models/

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  3. I continue to be amazed and cheered by your stories! How blessed you are with family and friends and what a super fighter you are. You are inspiring!😁

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  4. Thanks for your post. You’re an inspiration. I’m 18 months out from my stage IV metastatic (lung tumors) CRC diagnosis. Next week will be my 36th chemo treatment. 12 treatments of Folfox (until my feet went numb) and starting my 18th treatment of Folfiri plus Vectibix. I’ve has no tumor growth since treatment and I’m living my life as I always have. Over the past 18 months my faith in God has grown stronger which gives me the mental strength I need to stay positive. I work full time, lift weights 5-6/days week and am physically stronger than I’ve been in years. I enjoy reading positive post from CRC pts living their lives with no fear. Congrats on living your life without fear and continue good d health and blessings to you!

    Liked by 1 person

    • What an inspiring comment Kurt – thanks for posting it! Not only is it inspiring for me to see how you have THRIVED during Stage IV treatment – but I know it will be inspiring for my other readers to read as well! Congrats to you and I wish you the very best!

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