The Power of Stage IV Cancer Hope
Hope – it is such a simple, yet complex word. A short word that is easy to explain on the base-level but it can be incredibly complex to comprehend all the facets in which it can impact the human psyche.
Hope can be rational or irrational – the human brain has trouble distinguishing. Are we paralyzed in fear that we will not be alive for the next major Holiday? No – we have Hope that we will be here – no reason to logically assume that we won’t… But do we know? No, we don’t. We make that judgement purely based upon Hope…
Cancer rears those assumptions on their heads because it shifts the odds balances. For some in the cancer world, it is medically uncertain if they will be alive the next Holiday they are looking forward to. But how does the human psyche approach this question? Is it paralyzed in fear that we will not be present? No – it reverts to the same default base programming. Cancer or otherwise, our innate tendency is to think at a gut level, “Yep, I’ll find a way to be there”. But do we know? No, we don’t. Once again, we make that judgement purely based upon Hope…
Hope is a powerful motivator. As a Stage IV patient, it can be hard to get out of bed in the morning and try your hardest to live – whether by maximizing current life or fighting to extend life – without Hope. Without Hope, why would you bother?
I always think back to an analogy that comes to my mind when I am asked (often!) why am I so filled with Hope – especially after witnessing so many friends now succumb to CRC. I always give the same answer… “Well, I’ve been diagnosed & alive with metastatic cancer for 4 ½ years now. I could have spent those past 4 ½ years utterly defeatist & despondent OR I could have lived my life to its fullest as hopeful as I can be. I intentionally choose the second path.”
If I had gambled wrongly and it turned out that there was in fact no true basis for me to have that Hope – at least during those 1-4 years my quality of Life would have been emotionally excellent as I experienced and did things of much beauty and impact. If I had gambled correctly and through some miracle of science or otherwise I get out of this thing alive – at least during those 4+ years leading up to that time, my quality of Life would have been excellent as I experienced and did things of much beauty and impact!
In economics they call these two options, although completely different, as having the exact same downside risk: Death. Just the timelines are different. If I was defeatist and despondent from the very beginning, in either scenario I would have missed out on an incredible life, no matter how short or long it was. Not by chance but instead via an optional choice.
I personally found that option, driven by optional choice, unacceptable.
I mentioned in the previous column LIVING AN INTENTIONAL SUMMER WITH NO REGRETS that now days, leading an intentional life leads everything I do. Which is true. Today was a chemo infusion day but I worked on CRC advocacy for 4 hours prior to it and I had a clear plan of action of what I wanted to accomplish today before I left for infusion. A director at one of the largest research institutes in the world returned my email to begin discussions collaborating on a high impact CRC advocacy project. Yep – chemo or no chemo – it was a significant intention driven day!
But what leads the intentional life? The root of it is Hope. Without Hope in something, there is no guidance of what to attempt in an intentional life!
My entire summer vacation was at its very base root, powered by Hope. Hope that my tumors would not “luck into” into an explosive aggressive growth phase during my chemo break (via genetic mutation evolution); Hope in the possible data gained from the University of Michigan lung biopsy; Hope that my children would have the most fun summer possible (cancer be damned!); Hope that I would have incredibly special & emotionally powerful in-person meetings with CRC and Stage IV friends I either see rarely or have only met online; Hope that my impassioned advocacy talks in Boston would light a fuse and produce significant real-world impacts for CRC patients.
It turns out that my Michigan lung biopsy was unsuccessful (disappointing but not earth-shattering – it was “nice-to-know” info but not essential “need to know” info for my project to proceed) … but look at the length of that above paragraph. All of those above goals – all successful except one – came true via me having the lung biopsy done at University of Michigan. Without attempting it, even with its failure – all of those important and deep impact things would have not happened, an utter travesty. That would have been a lot of Hope lost! So my summer vacation was wildly successful in my book!
So was I mad/depressed that the lung biopsy failed? No.
Disappointed? Yes. But mad/depressed? No. How could I be mad or depressed when so much good occurred via its attempt & failure??
That is the power and essence of Hope. Good and bad things always happen in Life but you focus on the good – and then move on to the next round of Hope.
And Hope continued to impact me when I returned to San Diego from my summer travels!
The End of Summer – Hope Continues
It was my best summer in years but it had to come to an end. When I returned to San Diego, my end of summer CT-scan showed tumor growth – no surprise there – I had been off chemo for almost four months. It was now time to reenter the world of treatment.
The first time back to treatment always hits abnormally hard. The period of time preceding it tantalizingly had returned me to “normal life” hyper-charged through the prism of Stage IV cancer.
This summer, my life was no longer filled with doctor’s appointments and treatment schedules. By side effects and efforts to manage them. Instead, life was ruled by more standard priorities. I felt like I had rejoined the rest of society – a temporary glimpse back in time to my pre-cancer life.
The last workday of my chemo holiday was spent working on my experimental personalized immunotherapy project. A day of trying to take command of my disease, using every piece of experience and knowledge I could muster. A day of empowerment infused with hope in the possibilities of a research breakthrough.
Meditating on the end of Summer & the morning of my return to chemo
Then Monday morning, I was sitting in a 5×10 exam room, a patient like any other, preparing for my impending chemo infusion. A fellow Stage IV friend joined me for my infusion. I was grateful for her company. Perhaps a less joyful band of sisters and brothers reunion than I described last summer but just as meaningful in its own way. At that moment in time, when I was at my most vulnerable, perhaps more so.
Arriving home from infusion afterwards began a week of blurriness – a much rougher infusion than normal. It was hours upon hours of continuous sleep and nausea punctuated by glimpses of Hope. Brief forays out of my bedroom that gave a Hope lifeline that better treatment days may lay ahead – not only for me but for other Stage IV patients as well.
Tuesday, I mustered the energy for a quick lunch with two fellow patients who have responded fabulously to cutting edge immunotherapy treatments. Wednesday, during moments of mental clarity, I helped coordinate immunotherapy help for a close friend whose chemo is now failing. Thursday, I gave a blood sample for lab experiments related to my own immunotherapy hope. A blood draw followed by a quick drive back home to return to bed: time for my 11 AM nap.
I honestly have few memories of last week – it is largely a void of chemobrain amnesia. A blur of sleep and nausea. The things I can clearly remember? Those brief periods of Hope. That lunch with immunotherapy success stories, their own Hopes obtained. The slight glimmer of Hope heard in the voice of the friend I had helped. The Hope I felt myself as my blood was drawn – not for chemo but for future treatment possibilities.
These brief glimpses, coming during a dark week, filled my return to chemo life with Hope. Throughout the cancer world, patients are currently holding on their hardest & living with Hope – in immunotherapy research or otherwise.
The power of Hope in fact continued to drive my intention filled life into the following infusion cycle this Monday. The previous infusion described above was truly horrible. But my mad scientist brain was cranking… based upon past experiments I had an idea on how I might be able to alleviate the debilitating side effects. Did I know it would work? No… from past experiments I thought it might but… know? No… it was only a Hope. But I walked into that infusion center today not defeatist but filled with Hope. If successful, a blog post on its effectiveness and a full science post about its strategy will be written this Fall. 🙂 Hope continues on without pause in my life.
At the end of the day… no matter what the specific flavor you personally hold… without Hope, none of us – cancer survivors or otherwise – would truly be alive
PS A more focused shorter version of elements of this long column was published by the Philadelphia Inquirer newspaper last week. I strongly encourage you to read that column as well – I continue to believe that the newspaper column format encourages me to do my absolute best writing! BTW I now has an updated page on my blog with all my Philadelphia Inquirer newspaper columns organized in one place. I will update that page as columns are published!
PPS I know it has been awhile since I wrote a science post – one is almost done and hopefully will be the next one posted! I think you’ll love it!