A two-year survivor? Of what, exactly? And since when, exactly?

Posted in Uncategorized by Sean Holton on July 24, 2011

July 2011 with my new wheels

Today is the second anniversary of the day I was diagnosed with a malignant brain tumor. (July 24, 2009). The fact that I am still around to talk about it makes me a “two-year cancer survivor,“ in the parlance of my fellow patients and much of the rest of society. People have been asking me if I plan to celebrate and how. I will do something in my own way – like enjoy more rest today and  maybe make an extra special dinner tonight – like a slow-cooked pork shoulder roast with lots of veggies. I’ll also savor my usual glass of Jameson Irish for Happy Hour. In other words, today I will celebrate life much like I do every other day when I consider it a blessing just to be alive. The random nature of this particular day being the a two-year anniversary of my diagnosis doesn’t really make it that much more special than any other day. Last year, on the one-year anniversary, I used the day simply to review my medical records from that day in 2009 when I collapsed and went to the hospital by ambulance from the YMCA.

First anniversary rode my Scrambler back to the YMCA (7/24/10)

reflect and retrace and reconstruct my traumatic experience hour-by-hour

, minute-by-minute, allowed me to savor the pure normalcy and pleasures of a regular day of life exactly one year later.

 But if I am now to be termed and to think of myself as a “two-year survivor,” the journalist inside me  has two pretty basic questions that I need to have answered first:

Question No. 1 What exactly is it that I have “survived?”

Question No. 2: “At what precise moment in time did I actually begin to survive?”

In answer to the first, I am compelled to say that I don’t think I have survived cancer yet, because to me that implies that I have completely beaten back the disease and have been declared “cancer free.” That has not happened in my case and doctors assure me it rarely, if ever can be expected in the case of aglioblastoma multiforme
 brain tumor such as mine. Upon diagnosis, a man my age and in my condition could have reasonably expected to live 11 to 17 months (median survival time from the time of diagnosis.), have a 70 percent chance of living out another year and have a 20 percent chance of living two more years beyond that. So clearly I’m in the zone of good fortune, statistically speaking.  Several of my dear friends and fellow patients are true cancer survivors in that strictest sense of actually whipping cancer itself, in forms as fearsome as breast cancer, non-Hodgkins lymphoma, small-cell lung cancer and breast cancer, esophageal cancer, ovarian cancer, carcinoma, colon cancer, kidney and pancreatic cancer. I don’t yet feel I have earned the stripes to count myself in their ranks even as I continue to draw hope and strength from their stories on almost a daily basis.

These are the true cancer warriors I look up to even as I accumulate experiences and smaller victories of my own along the GBM trail.

What I have most definitely survived, at this point, are two tough years of cancer treatment. That time and the complications from and recurrences of my tumor have led me through three brain surgeries and hospital stays, two courses of intensive radiation totaling 47 treatments, at least a half-dozen chemotherapy regimes involving pills as well as muchintravenous infusions of harsher drugs. I have also survived a profound upheaval that has forced me to re-order my daily life around my condition and all the attendant doctors’ visits, diagnostic tests, laboratory visits, prescription-drug and side-effects management, health-insurance hassles and accommodations to new financial realities such as not being able to work, and  my newly compromised level of mobility and independence. So there. I have survived all of that and am still doing well and staying happy and maybe even encouraging  some other people to believe  that we each as human beings do indeed have the power within  us to weather even this category of personal shitstorm, or categories much worse in kind or degree. Survival is all about adapting to changing conditions and evolving thusly. Like Charles Darwin says, we’ve all got the instinct inside of us or we and our species wouldn’t even have made it this far And I’ll give myself and fellow patients  and survivors some credit for that, too, today as I raise my chilled glass tonight.

Now on to Question No.2: At what discrete, moment in time did I actually begin to “survive”? Was it when I unwittingly sailed right through  the invisible, unimaginable instant, perhaps many, many years ago, when something awful happened in the DNA of that first abnormal glial  cell in my brain to make it go rogue and then begin to multiply along with other fast-dividing cells and eventually percolate into a growing tumor?  If that is the case, then maybe I have really been living with (and surviving) brain cancer for a decade or more. Maybe lots of people like that are out there right now surviving cancer without even knowing they have it. We will never know the answer to that mystery.

Or did my good luck at the Big Casino of natural-selection begin  in the flash of good sense and instincts wo years ago today when I decided to suspend my routine workout on a stationary bike because I was pushing myself too hard? When I collapsed first in a chair and then to the floor, resulting in an ambulance being called?  Was that the crucial, Darwinian moment of adaptation – of change in my routine behavior in the face of a perceived threat? – that saved my life?

Did my “survivor clock” start ticking when I admitted to myself that I was more than just tired? When I stopped resisting the Rural Metro ambulance crew’s efforts to buckle me into a stretcher, inject me with anti-seizure drugs and load me up for a trip to the ER? When I (given a choice between two equidistant local hospitals by the EMTs) happened to choose to be taken to the one attached to the world class cancer-treatment center where I’m still a patient and doing very well today? (Even though at the time, lying in that ambulance, I wasn’t yet even thinking about cancer,let alone cancer treatment.) Did that snap decision save me, Charles Darwin?”?

Maybe it did.  But I think the more natural point for me to start dating myself as a survivor came the next day – it was a Saturday – when I signed those consent forms authorizing a neurosurgeon I’d never met before to cut open my skull and remove the malignant mass that MRI scans had picked up in my brain’s right temporal lobe. Getting through brain surgery successfully that Sunday morning (7/26/09)and being back at home in my own bed just four nights later is still something worth celebrating today. Undetected and left unchecked, that tumor would have kept on growing and easily killed me in just a few weeks. Or have been declared inoperable upon diagnosis, as in the cases of many GBM patients.

Still, even now as I look back over these past two years, I am most fascinated by all of those moments early on that might have changed the whole picture for me today had they gone differently. They were not the first salvos in some “heroic battle with cancer” like you read about in the obituaries all the time. I continue to be inspired by such survivors and they deserve to ne memorialized by poets in their death notices But my main, battlefield triumphs as a cancer-survivor have been more about the nails someone remembered to put in thehorseshoes on the night before the Battle of Agincourt than the longbows they put in the hands of the archers. And going forward I will continue to focus my mental energy on small victories, because I am learning they are the most important. I told my sister, Kathleen, just last week that deciding to take a long nap in the middle of a Wednesday afternoon somehow didn’t make me feel like much like someone in the midst of the epic battle I think I’m supposed to be visualizing now as part of my self-concept as a warrior- survivor. But Kathleen assured me otherwise, reminding me that naps are just as important as doctors’ visits, pills and good meals. So be it, then. I will remain determined to take more long,heroic naps, if that’s what it takes to survive. Maybe  my obituary can even say “On July 24, 2011, Sean Holtonage 51, of Orlando, tooke  a very nice, long and interesting nap two years into a long adventure with brain cancer. By the time he awakened, Sean had realized the most important tlesson he had learned during those two years was how to get over himself. So on that very day, he  became a true survivor, not only of  cancer, but a survivor of himself.

And  that was a story he thought was worth celebrating on every July 24 thereafter, for many blessed years to come.


21 Responses

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  1. Molly BB said, on July 24, 2011 at 8:28 am

    You’re something else, Sean, my friend! Indeed, you have been an inspiration/encourager to me. Thanks and as we raise our chilled glasses in corporate celebration ‘here’s to you Sean – one tough son-of-a-gun’! Have a blessed day!

  2. Lisa said, on July 24, 2011 at 9:08 am

    Great post, Sean. I’m blessed every time I read your blog. Cherish the day and enjoy your naps….

  3. Janice Blase said, on July 24, 2011 at 1:20 pm

    I’m lobbying the Cosmos for many, many more long, heroic naps for you, Sean! We live about 3,000 miles apart, have met only on Craig’s blog and yours, but you’ve become very important to me…someone I want to share this Earth with for many more years. You really are a most amazing man!

  4. scott said, on July 24, 2011 at 10:41 pm

    Sean, my man, you’re an inspiration. And that’s not some cornball slap-and-dash comment or reaction.
    it’s the real thing.
    You really are … probably to more folks than you realize.
    Now, if you’d do us all the favor of actually beating this thing back, so that we can properly treat ya to Jameson’s at a fine establishment like Hoop’s (where we might have to smuggle the Jameson’s in), I’d sure appreciate it.

  5. Jane said, on July 25, 2011 at 10:31 am

    You’re a walking miracle! Love the idea of a “heroic nap.” Mind if I borrow it?

  6. Becky Bultemeier said, on July 25, 2011 at 11:19 am

    Sean, Thank you for Sharing with us. As you share your experience, I for one, receive the words first applying them to your experience – thinking of you, sending you strength, wanting to hug you. (Insert virtual HUG here.) And then I think of what’s going on in my life. Using your words, through my own filter, brings me a higher level of wisdom, a form of emotional intelligence. We go through life not always remembering that every person we meet has something going on – something to SURVUVE! Each at different levels of testing the evolutionary strength Mr. Darwin spoke of so matter of fact. Your words ARE being received and put to good use, I though you would like to know that. Let’s tell Mr. Darwin the secret, I think it’s because we have each other and some of us are as special as you. You bring me strength in my time of need that is ever so appreciated. I wish I had a way to run it through a amplifier and send it back to you 10 fold. Love you. Becky

  7. Justus said, on July 25, 2011 at 4:56 pm

    You are doing just great—hang in there Sean

  8. thestonechick said, on July 25, 2011 at 8:49 pm

    I enjoyed the hell out of reading this Sean. I look forward to the next one.

  9. paulglester said, on July 25, 2011 at 9:35 pm

    I say we all take a heroic nap today in honor of Sean. God bless you, man.

  10. Claudine Hellmuth said, on July 26, 2011 at 12:20 am

    Raising my glass to you Sean! Here’s to heroic naps!

  11. David Blank said, on July 26, 2011 at 2:00 am

    Great talking to you a few hours ago. Here’s my favorite line from your post: “That we each as human beings do indeed have the power within us to weather even this category of personal shitstorm.” Poetic genius!

  12. Jamie said, on July 26, 2011 at 11:39 am

    You have taken us all along on this important journey and done it with humor, grace, and style. Thank you for making us part of your life.

  13. fish said, on July 26, 2011 at 1:52 pm

    you’re an inspiration Sean!

  14. Mary Munster said, on July 27, 2011 at 6:00 pm

    Sean, you’re amazing… must be an inspiration to many fellow sufferers and their loved ones. You are made of such tough stuff, I really think you deserve to be an honorary Brit!

  15. Maxttrue said, on July 27, 2011 at 10:08 pm

    You are amazing and I knew two years ago, your time had not come. You are the Right Stuff Sean. Given the options, you’ll laugh when I tell you Obama has a good shot at my vote. Unless Hillary challenges…lol.

    And you’ll be voting too. You made me think of that visualization story I posted at Craig’s long ago. You are the warrior Sean. That is why you are still standing (or sitting). I don’t know if you realize the inspiration you have given others……

    I told a friend who is back from chemo tonight to visit your blog. I hope he does.

  16. Mike Weatherford said, on July 28, 2011 at 1:22 pm

    ShitSeanholton. You wrote that whole thing and didn’t say one word about Captain America. You just tell Darwin (is he some Democrat?) that your survivor clock is set for 2012 because of the Avengers. And James Bond. And Batman. Most of all Batman.

  17. Chloe said, on July 29, 2011 at 11:17 am

    Sean, Loved the song you linked.
    I have one I’d like to share with you that touched me so deeply. It’s a clip from a wonderful movie I downloaded on Netflix: “As it is in Heaven”. Hope it affects you even a fraction as much as it did me.
    It was such an inspirational movie and this song summarizes what it had to say so well.

    Gabriella’s song:

  18. Bec said, on July 30, 2011 at 12:48 pm

    Go you! You rock!

    My husband was diagnosed 1 Sept 2009 and going strong. You are both brave battlers, as we say here in Australia.

  19. Kelly Alston Fent said, on July 31, 2011 at 2:29 am

    Sean – You twist me up stunningly every time I read your blog. Can’t help but see D.R. Smith and Teddy Kennedy – surrounded by magnificent masses – giving you a thrilling Standing O for your ultra-fabulous attitude and awe-inspiring accomplishments. You knock me out, Sweetness. (No blushing now!)
    Of all the people I’ve known, you’re at the top of my “Yeah…He’s Really My Lifelong Party Buddy! Am I Lucky or What?!?!?!” list.
    Of course, I secretly curse you for your phenomenal word-smithing. To that, all I can say is: I was YOUR editor at one time? Holy crap! (OK, so it was high school. I was still so not worthy!)
    Love, love, love ya (but you already knew that, right?) – Kelly 😉

  20. itscallie09 said, on November 29, 2011 at 10:42 am

    Today, November 29, 2011, God called home a great man. A man who’s words could change a person’s life for the better; change perspective in the inevitable to sheer humor; change the world by the simple phrase “Same Time Tomorrow”. Sean, I will deeply miss reading your blogs. On my worst day, I could come to your blog and you would make me smile and feel better just by your inspiring words and humor. To my friends Julie and Tim, my heart goes out to you and your family. I know beyond a shadow of a doubt, Sean will be greated at Heaven’s Gates with an array of angels that will guide him into heaven. . Of course, he will arrange his arrival and have a feast waiting for all! Sean, you lived a full life; dedicated to truth and a belief that living life to it’s fullest is the only way to go. You are a hero; you will live in the lives of the people of who your words have touched. Sean, to coin a phrase, see ya’ Sean, “Same Time Tomorrow”. Carolyn Radman ~

  21. Bec said, on December 5, 2011 at 11:13 am

    I am so sorry, Sean. 😦 I did not know you, but read your blog. My husband was diagnosed 2 months after you, and is currently in palliative care 😦 you can not read this, but somewhere in the universe I thank you for sharing your journey.

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