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.
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.
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.
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:
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.”