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.

Homer Simpson Depressed2013-06_Fathers Day_Catalina Island_Dad and Amelie Zipline_2-cropped

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!

This Summer

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.

2016-08_Return to Chemo Morning

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

-Tom

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!

31 Comments on “The Power of Stage IV Cancer Hope

  1. Hope is a good thing.
    Yes, to plan on being there for Thanksgiving is hopeful.
    If we have the strength to be hopeful.
    How was your biopsy unsuccessful?

    Like

    • Couldn’t find any tumor tissue in the needle biopsy sample… not a clear answer why… but yes, I still have cancer in general!

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  2. Tom –
    Your posts are always such a breath of fresh air for me. I too am struggling with a new treatment and all of the new side effects (YEAH!). Somedays it is hard to face that next infusion when the last one made you feel so awful, but with each one, I try to learn how to cope with the side effects and beat them to the punch. It is that HOPE that the next one will be easier that makes us able to face them again and again.

    I have people often comment that “I don’t know how you deal with it all”, or “I’m sorry you have to go through such a rough experience”. Not that I would want to go through chemo or the cancer experience for the rest of my life, but what I have learned this past year is that life is for living every chance you get and for recognizing and appreciating those little victories along the way. There are days when I just can’t get out of the bed (at least not for long) for more than what is absolutely necessary, but on those good days… LIVE THEM!!!

    Make memories with your kids, visit with friends, tell people you love them, and do those things that you’ve always wanted to to do. So many people go through life never really living, just the same monotony every day – get up, go to work, come home, fix dinner, do homework, clean the house, go to bed only to get up and start the next day the same because they take tomorrow for granted.

    So, while I have do have enormous HOPE that tomorrows will come, I also no longer take them for granted. We plan trips and visits with family/friends, go on walks just because the sunset is awesome, and take the time to really talk to those people who are important to us. It takes me a little longer to accomplish things now (because I usually need a nap), but with a little patience and planning I am still able to do most of the things I want to do and plan to continue that way as long as possible. You helped me see that light with this blog not too very long ago.

    You are an awesome resource of encouragement and hope!

    Your cancer-versary friend (June 4th),
    Nancy

    Liked by 1 person

    • This is right on point. Bless you. I have the same attitude. 3 time cancer survivor, of three primary cancers. The latest is lung. I’m on targeted therapy since May. Scan in July shows its working. I hope and pray everyday for continued good news and as the article states ,if not…. I’m hopeful that something else can be done. Never give up- EVER🙏

      Liked by 2 people

      • Great to hear from you as well Fran – I love your attitude! And especially as a 3-time cancer survivor you are an inspiration to many! Wishing you the very best! -Tom

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  3. I was in with my oncologist 2 weeks ago to learn that my latest round of chemo was not working AND that a liver embolism or RFA were not an option either. On a break now. But as per Tom above that is no reason to chuck in the towel even that meeting was very disappointing and probably means that I will be getting sick in the next year.. I remind myself that people have survived terrible ordeals such as concentration camps through determination and not giving up hope no matter the odds.

    Hope is what keeps you going.

    Liked by 1 person

    • Not trying to be nosey, but has your doctor discussed a partial liver reduction with you? I go in next Monday to discuss my liver metastases and what my own options might be. Mine is stage 4 colon cancer that has metastasized in 3 spots in my liver. I know they have the ability to remove as much as 80% of the liver and the remaining portion will expand to handle the duties of the liver. My oncologist said he has seen patients surviving two to three liver surgeries of this type. If your doctor hasn’t mentioned this, it might be worth getting a second opinion. We are our own best advocates. Good luck!

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      • David

        My liver is rotten with lesions so any liver operation seems out of the question. But I am very disappointed that they could not do more. I am having my medical file reviewed so we see what comes out of that. You situation sounds a lot better than mine. I live in Ireland and I think US doctors are far more aggressive when it come to treating liver cancer. Best of luck with it

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      • PS

        It your cancer spots are all on one lobe you got a great chance. It 50% chance that The cancer will not return if they operate. I take those odds any day

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    • I wish you were in a different medical situation but your attitude and spirit are incredible Noel – you are so right in everything you wrote. Wishing you the very best and keep that Hope. Take care, Tom

      Like

  4. Hi Tom, good to read. Saw this blog shared on FB, I am a stage 4 cancer survivor. Diagnosed with primary renal lymphoma, a rare and aggressive type which clinical trials report as coming with a year average life-span, at 37. I was healthy and it was out of nowhere, I was studying for my PhD at the time, so relied heavily on The ability to do my own research to make treatment decisions. Major surgery and three different chemos failed. I got on the CarT study at mass general, had seizures, was put in a medically induced coma and two weeks later the cancer that i’ve been making up a large part of my body, was gone. When I was told there was no conventional treatment that could be done, I Took things into my own hands as well including living life fully, visualization and meditations, and knowing I would not be leaving my son, no matter what. I believe it is this hope and the energy put forth that through the CarT cell-study to me. I’m a couple months in remission and have been thinking a lot how this also applies to remission. When you fight for so long and all of the sudden you were OK, it is a big adjustment and is a fear of it coming back and I think this fear can make it come back. Hope and living life are just as important during treatment and remission. I saw your blog liked to discuss science and clinical trials, email me if you ever want carT cell study experience/info. It is definitely one of the cutting edge immunology trails. I hope yours goes well, it seemed for me immunology did what chemo never could.

    Liked by 1 person

    • Thank you for sharing your story with both me and my readers Michelle! You have indeed tackled your disease (and now remission), medically and mentally in an awesome fashion. It was great to read and I hope for the very best for you. Between your attitude and fast advances in therapeutic research right now, both you and I should be filled with Hope. Take care, Tom

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  5. Great blog. Why not have hope but with systemic chemo your immune competance suffers as much as the person. I hope our paths cross on this planet.
    Another cancer universe awaits you Tom. God bless and goodluck.
    pete

    Liked by 1 person

  6. Thank you for sharing this!!! I was diagnosed with leiomyosarcoma 6 1/2 years ago with a grim prognosis! I decided a long time ago cancer was not going to let cancer steal my joy. I have made thousands of beautiful memories with my family since then. Have there been hard times? Absolutely!!! But because of hope I do not stay there very long. I am in chemo for the fourth time and the same as you I am in a chemo fog for a week, but I then have two good weeks where I get to LIVE!!!! Hope is a very powerful, beautiful, healing thing.

    Liked by 1 person

    • Thank you for the comment Sherrie! I love how you have approached your diagnosis and treatment – and I hope for the very best for you in the future! Take care, Tom

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  7. My wife shared with me your Hopefilled posting. It’s a shame cancer is affecting more and more younger folks like yourself, men and women who still have children in their homes.
    I have a problem with the apparent out of date colonoscopy recommended timeframes. Based on the frequency of cancer occurrence in younger adults, it seems lives might be saved by lowering the recommended initial testing age and more frequent follow ups. For whatever reason, I read about too many 35 year old fathers being diagnosed with stage 4 colon cancer. These are young adults whose families are dependent upon that parent to provide for them and protect their young lives. They also have young partners with whom they have barely started down their life paths and who will too soon be left as a single parent.
    Hope is what those of us with stage 4 cancers have to hold onto. Hope and for me a happier and more friendly attitude to share with those around me. As you so clearly explained, during those days of treatment, each of us suffer with our worst symptoms/side effects.
    Friendly words, finding humor in my situation and sharing it with those wonderful nurses and staff who do their best to make my treatment as bareable as possible, this is what I can offer. As I get further into each of my 5 hour long infusions, I am less and less able to do much to brighten anyone else’s day. Still, whenever my mind and energy level begins to return, I look for opportunities for friendly banter and teasing about the process through which these wonderful people are helping me. And though my “chemo” brain remembers less and less, calling someone by their name and remembering some important event happening in their lives seems to be the kind of gift I can share. I love to spot, in the waiting room, another patient who is somehow in a worse phase than I am and saying something to engage them in a brief conversation. The new look on their faces is as much of a gift to me as the recognition of their presence and visit is to them.
    At home, alone with my wonderful wife and caregiver, as I sit here wearing my 46 hour long 5FU pump, I do occasionally face my reality that these sickening treatments, which take chunks of time out of my life, are only postponing my inevitability. I believe those times are a part of the end-stage process. So, when I have those thoughts and subsequent sadness, I let myself feel them. Once recognized and processed, I find something, you identify as “Hopeful”. Each of us have different gifts to offer and offering them at this stage of our lives may help others and thereby help ourselves. Good luck in all you attempt and may you find many more occasions to celebrate before your own “X-DATE”. (See my humor?)

    Liked by 1 person

    • Thanks for your great comment and sharing your wonderful attitude David. I agree with you – something needs to change to get better screening/diagnosis of early-onset CRC such as myself. CRC is curable in a significant number of patients, the earlier it is caught – but because we are below the current screening age, people like me in my age bracket are often diagnosed when they are already metastatic… Something has to change!

      All the best to you, -Tom

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  8. As a fellow stage IV survivor, I identify with your focus on hope. I figured if I had only so much time to live then I had a choice. I could choose to live my life with joy and hope or despair and depression. Can’t say I didn’t cry myself to sleep at times but for the most part I chose joy and hope every day. I wish you well on your journey. I want you to know I just celebrated my 18 year anniversary.

    Liked by 1 person

    • Thank you for leaving the comment Heidi 🙂 I am glad to see we have similar mindsets & experiences – although I am only at the 4 1/2 year mark (still with active disease), you have given me a goal of 18! Take care, Tom

      Like

  9. Tom, can’t figure out how to send an email, so will post a comment.

    I live with metastatic cancer (breast) and blog about living with serious illness, conscious dying and whatever else interests me.

    You might enjoy my blog – I too engage integrative and unconventional healing approaches. Now that I’m on hospice 20+ years after my prognosis date, I don’t do many conventional treatments, but am still under medical care.

    Thanks for your blog, Tom!

    I’ve subscribed and look forward to reading more.

    warmest healing regards,
    Stephanie Sugars
    https://www.mylifeline.org/StephanieSugars/updates

    Liked by 1 person

    • Hi Stephanie – thanks for leaving the comment, telling your story and letting me know about your blog. I’ll check it out! We may have different anatomical sites for our primary tumor origination but Stage IV survivors share much in common regardless of those details. Nice to meet you. Wishing you all the very best, -Tom

      Like

  10. Pingback: Chemo in the Fast Lane | AdventuresInLivingTerminallyOptimistic

  11. wow! I like the title! Ending with optimism. read all the posts! So many of us stage fourers? Even from 🇨🇦 Wouldn’t it b great to meet in a city like Vancouver BC somewhere for a weekend convention so we can do a meet & greet? Granted some may not be up for the travel hence “inspire” or other similar FB sites. (sigh) just a thinking out loud is all? Call it the “S-IV Convention” stage fourers will kno the acronymn right away! 👊🙏🏻☝️️👀😎🙃

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  12. Pingback: True Faith (FAVORITE POSTS OF 2016) | AdventuresInLivingTerminallyOptimistic

  13. Pingback: Whistle While You Work | AdventuresInLivingTerminallyOptimistic

  14. Pingback: Chemo Through the Years (Hope is Very Much Alive!) | AdventuresInLivingTerminallyOptimistic

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