Living an Intentional Summer with No Regrets

I had my post-summer-chemo-break CT-scan on Wednesday.  Regrets & worry started to try to enter my consciousness.  They were unwelcome invaders and to be honest, rarely seen or felt in my psyche now days.  But here they were – as I laid on the CT-scan table getting scanned…. Laying there completely alone, unlike the constant buzz of comradery that had surrounded me throughout my summer. A scan to quantify how much my tumors grew (and potentially spread) during my extended chemo break over the summer, before I restart FOLFIRI chemotherapy on Monday.  A summer chemo break I took in order to support my potentially curative immunotherapy research project.  A summer chemo break I took in order to enjoy a massive & emotionally needed trip around the Midwest and Northeast corridor, spending time with family and close friends, as well as doing a vitally important advocacy event.

As I laid alone on the CT-scan table, I forcibly pushed the tinges of regrets and worry out of my mind by mentally reliving my favorite memories from my summer travels. I smiled in the CT-chamber.

I made a very intentional decision a while ago to live an Intentional Life with no regrets.

That decision permeates everything I now do.  I plan each day with clear intentional goals in mind – the goals drive what I do.  Every day is spent living an intentional life.  The goals are wide ranging but they are intertwined by common values and themes – the intertwined compilation of them largely represents who I am now.

Family Goals… being here for my kids – both now and as much in the future as possible. Treatment Goals… both tolerating current chemotherapy to tread water & buy time for better therapies to be discovered and doing everything in my power to line up potentially curative immunotherapy shots on goal.  Advocacy Goals… helping as many fellow patients as I can using my unique role as a patient-scientist-advocate.  Life Goals… Living Life to the fullest that my current circumstances allow. Take chances. Take bold shots on life goals – not just settling for safe and more comfortable dribbling.  When the game clock is ticking right over your shoulder – that is exactly when you need to start taking some bold shots.

 

37 Shot on Goal_Cropped.png

So I intentionally took some bold chances this summer.

The overarching example was the length of my chemo break. It turned out 3 ½ months long, pushing closer to four.  That was a longer break than I had envisioned – to be frank it made me nervous.  It was certainly a longer break than my oncologist would have liked to see. But as I planned out my summer – potentially once in a lifetime opportunities kept appearing.  A number of them, in their own way – whether big or small – were opportunities for a shot on goal that was important to me. That was important to my Life.

With that game clock ticking loudly over my shoulder, I could not say no to these opportunities, could not say no to taking some chances.

And it was the best summer I have had in years. I loved Life. With no regrets.

'My insurance won't pay for an MRI!'

‘My insurance won’t pay for an MRI!’

CT Scan

Which brings us to today – the CT scan results have just arrived.  Before seeing the results, I had made a firm decision: that no matter what they showed, I would continue to have no regrets on my summer,  I would not second guess my actions, instead I would focus on remembering the good times from the summer and focus on my goals and actions for the present and the future.

Here are the scan results:

There were some significant  growth in my tumors. More than I expected.  But at the end of the day – not earth shattering – they are about the same size as they were last Fall.  10 months ago.  Chemo last winter had shrank them and I think it is likely that chemo will shrink them again.  Game on.

So – with those results I continue to live my life very intentionally.  The goals I mentioned above have not been changed.  I had already approached them with a sense of urgency, that certainly is not diminished!

My next areas of focus:  there will be a major meeting in an hour (!) updating the data & discussion for my personalized immunotherapy trial.  Monday is my return to treading water with FOLFIRI chemo…  Overlaid on these areas of focus are many in parallel advocacy programs helping fellow patients in progress – stuff I believe may truly change the CRC world.

I hope that you too are living an intentional life with no regrets as much as possible. It really is an amazing way to live.

I wanted to close with what I believe is one of the best pieces of writing I have every done.  I absolutely love it and I hope you do too.  It was written, single draft stream-of-conscious in less than 30 minutes as I emotionally battled some depression the final night of my summer vacation and the impending return to the “real world” of cancer scans and treatments etc. It started out intended to be catharsis to battle my depression – but it ended up being quite terminally optimistic.  🙂 As I mentioned in July, I am now writing a regular column for the Philadelphia Inquirer newspaper.  I strongly invite you to check out my columns there – I think they are the best writing I have ever done. They have been wildly popular and have been appearing in both the online and print editions. I have a Stage IV patient voice and viewpoint that is not often heard regularly in a major newspaper.  It is a slightly different flavor of writing than I do here. More free-form, more creative, yet ironically I think more focused.

As the sun sets on my intentionally lived summer… I look back with no regrets.

2016_Holland MI Summer Sunset.png

So from the Philadelphia Inquirer, please enjoy this, a highly personal parting look back at an incredible summer and what I did in it – one of my favorite writings ever:

Living with Stage IV Cancer: Report From My Currently Incurable Summer Vacation 

In June I wrote about plans for a currently incurable summer vacation, but I couldn’t have foretold the incredible experiences that lay before me over the next two months. It truly was the best summer I have had in years, with everything magnified through the prism of a Stage IV cancer life.

It was my best summer in years not only in spite of Stage IV cancer but in many ways because of it.

“Magnified through the prism of a Stage IV cancer life” is exactly how it felt.  I knew that taking a summer off from chemo treatment would probably cause some tumor growth but when you are faced with the odds I and other Stage IV patients often face – quality of life is always balanced with quantity.  Every day of a carefree summer counted in special ways towards the quality side of that balance, an equation that can be hard for someone without a currently incurable diagnosis to truly comprehend.

I did not waste a single day.  I took chances. My life became a whirlwind of daily experiences and the rush of experiences arrived in a nonstop flow of excitement and fun.

Reliving childhood memories with my kids and extended family in my Michigan hometown and then creating their own new childhood memories at their cousin’s and Grandparent’s homes.  Attempting cutting edge science for the treatment of my own disease.  Giving Stage IV patient advocacy speeches before hundreds of people.  Visiting very close friends of the Stage IV community across multiple time zones, in cities big and small.  The simple joys of riding a Jeep at sunset through the rural countryside and the complex joys of long in-depth emotional conversations with fellow Stage IV survivors.  Home cooking and the finest of city dining.  Visiting rural and suburban family homes and staying at urban boutique hotels.

Every day was an adventure.

One highlight: Spending hours with a fellow Stage IV patient currently living eleven years into her diagnosis partially because of a cancer drug I co-invented.  We spent our evening deep in discussion at a restaurant fittingly named the “Miracle of Science”.

It was the ultimate “Cannonball Life” summer.

And today it comes to an end.

Tomorrow, I return to the world of CT-scans and tumor blood marker tests.  To doctor appointments and infusion centers.  To chemotherapy and treatment.  I’ll find out shortly what the medical costs were from my currently incurable summer vacation.

No matter the test results I receive in the coming days, I will have no regrets.  I lived my life to the absolute fullest this summer and I made many memories to last a lifetime – both for myself and for those I was with.

As the sun sets on my currently incurable summer vacation, I’ll end with a paraphrase of how I started it: “And for that opportunity I am very thankful.  No matter what your situation, I hope you have enjoyed making some good memories the past couple of months.  That is what summers are for.”

28 Comments on “Living an Intentional Summer with No Regrets

  1. I just got back from reliving my own childhood memories in Michigan. I swear I was 10 again! And, I’m pretty sure I’ve never heard so many giggles from my daughter in one afternoon. She loved getting smashed by the waves together. It was a day of true living. I can really understand what you are saying with that…and I believe as we get back into the swing of things that I need to make more of an effort to live each day with intention. You’ve got a good head on your shoulders Mr. Mar-silly. 🙂 I’m glad we’re friends, and I’m happy to learn from you!!

    Liked by 1 person

    • One of these days we’ll have to coordinate our Saugatuck/Holland summer visits Nea! We already have a big kid party going on with all of our cousins’ kids (all about the same as ours) – yours could join in the mix! A real highlight to our summers both for me and the girls! Running around a beach on their own at sunset exploring, building forts etc – such a part of my childhood at that age but not so much a part of city living……

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  2. Thank you again Tom for sharing and making an intentional choice to be an advocate, scientist, and a wonderful friend to all of us living with cancer.

    Your writing has become so much more than a blog; but a gift to so many people.

    Liked by 1 person

    • Thank you Chrissy – that is an incredible compliment for a writer to hear – thank you! I missed you on my travels this summer – maybe it will work out next summer!

      Like

  3. I’m so glad that you had such an amazing summer. You are such a great help to all of us with this rotten disease. I wish you well, Tom, and soldier on and enjoy each day of your remarkable life.

    Liked by 1 person

    • Likewise back at you Helen – soldier on… not easy but I firmly believe there are better therapeutic options than chemo steadily approaching. I’m off to the FOLFIRI chair in about 4 hours – got to keep treading that water myself… Take care, Tom

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  4. Thank you Tom, enjoyed this entry.
    Thank you for the reminder of enjoying every day as a gift, but also reminding me to live with purpose & eager intent. I still find myself looking thru cancer colored glasses, mindfully enjoying interactions with others. I still find myself being lackadaisical most of my days & very uneventful. Between you and Nathan my physical and mental self are being positively challenged. Your advocacy is irrevocably appreciated.

    Liked by 1 person

    • Nathan is quite the incredible role model isn’t he?!! (He doesn’t have a blog but for those interested, google Nathan + Colon Cancer Podcast). I didn’t originally live an intentional life when I was first diagnosed. Something just eventually clicked in me that got it started, I got to a moment where it was an intentional decision to do it – and I haven’t looked back since. Perhaps you will come to that moment too. It truly does lead to an amazing new flavor of Life!

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  5. Whew! Had me clinging to every word. Better treatments are right around the corner–thanks for helping so many SO much.

    Liked by 1 person

    • Non-chemo therapeutic options really are getting SO close Akasleen! I’m off to the FOLFIRI chair in a few hours – gotta keep treading water just a while longer…

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  6. I am rather new to the stage IV diagnosis which I have found to be a double edged sword. It has brought me so much clarity to what it truly means to live. I only wish it hadn’t taken this diagnosis to finally see what matters in life, but better late than never and these memories now are so vivid and real. So glad you are out there! I feel like you can read my mind. Good Luck on your upcoming treatments. Your great memories will sustain you!

    Liked by 1 person

    • Thank you for the comment Kathy – yes, I think we are definitely on the same page and of similar mindsets! Wishing you the very best in your treatments as well! Let’s keep treading water (I’m off to FOLFIRI myself in a few hours) – better treatment options are on their way!

      Like

    • A pre-cancer diagnosis friend of mine used to say “No tears, No regrets!”. The meaning of such a short simple phrase did not hit me until recent years. Indeed words to live by. Life is good! It has its bad aspects but you can also find its good aspect too – and it is a conscious choice to focus on those in day-to-day life. Today will be FOLFIRI vomiting for me (bad) but instead, I consciously focus on the wonderful friend who will be visiting me in the infusion center (vomiting be damned, I’ll be glad to see her), other friends asking me to text as soon as I get home safely etc), and the fact I honestly think FOLFIRI will shrink back down my tumors, allowing me to tread water longer. A lot of good overlaid over something with bad aspects. I focus on the good. Life is good!

      Liked by 1 person

  7. I too am stage IV lung cancer and have been for almost four years. I chose to go off Avastin in Januare and am facing my second scan soon. Hope it is as good as my first scans in April but if not it was so worth it.

    Liked by 1 person

  8. Sometimes, we have to trust our intuition. Your intuition did not let you down. We’ll all be waiting to hear what’s next for you.

    Liked by 1 person

    • My medical intuition is pretty good (but not perfect). But looking at the TOTALITY of my life, I think my intuition has been pretty damn good. Diagnosed >4 years ago, I have had INCREDIBLE memories the past 4 years, I’m a better person than I was pre-cancer, I’ve experienced and done things that I never would have done without cancer, I’ve met and helped innumerable wonderful & amazing people —- and 4+ years later, even with non-standard treatment flowchart choices I have made, I am still without any clinical signs of disease – just spots on a scan. Life is good. Now it is time to climb back into the FOLFIRI chemo chair in a few hours and tread some more water. Better therapeutic options are on their way, my intuition is clear on that.

      Liked by 1 person

  9. Hi Dr. Marsilje,

    Great article and absolutely true. My husband, already a non-hodgkins lymphoma survivor, is now battling stage IV colorectal cancer but because of your ASCO review article, he is now in the phase 3 atezolizumab/cotimetinib trial.

    Thank you for all you do!

    Liked by 1 person

    • You brought me such a BIG smile to my face reading that. My sincerest wishes for the very best luck on the Phase 3 Atezo/Cobi trial!!!

      Thank you for your comment, it made my day 🙂

      -Tom
      PS Keep us updated on how the trial goes!

      Like

  10. Good afternoon.  I recently stumbled onto your site (mid June) after coming home from a chemo treatment.  I have stage IV rectal cancer that has metastasized to the lymph nodes in the pelvic/torso area.  The stumble must of been meant to be because your article was regarding the MSS tumor immunotherapy trial being being moved up to a phase 3 from phase 1, and how effective it has been on the MSS tumor.  I am trying to gain more information regarding this trial. Any information you may be able to forward would be appreciated. Thank you, Laura      

    Liked by 1 person

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