Gratitude (Parts I-VII)

Posted in Uncategorized by Sean Holton on September 2, 2009


“It was like that all week — people finding their places on a sliding scale of relative gratitude. Those with wrecked yards gave thanks for dry floors. Those with wet floors gave thanks for their walls. Those who lost a wall gave thanks for their roof. Those with no roof found heaven in an 8-ounce cup of ice.”

 That’s a paragraph from a story I wrote back in August of 1992 after spending a week covering the devastation wrought on Miami by Hurricane Andrew. Widespread disasters like hurricanes have an immediately stratifying effect on society as a whole, slicing people into new categories of “haves” and “have nots” — categories with permutations that did not exist even in the moment before the storm. We saw the same phenomenon here in Orlando during our own historic hurricane season of 2004, when the metro area was hit by three major hurricanes in the space of about six weeks. You either had power, or you didn’t. You either had running water, or you didn’t. You either had a dry house, or you didn’t. Nature didn’t care who you were or how much money you made. Your new lot in life was determined entirely at random.

It’s the same way with getting a cancer diagnosis, except that it’s on a much more individual level. On July 24, I was hit by my very own, personal, medical hurricane — a diagnosis of a Grade IV brain tumor. As anyone who has lived through a place hit by a real hurricane knows, it’s a crappy place to be in general. But once you get over the initial shock and start looking around at others who are in the same general predicament, you start to sort out your place on the “sliding scale of relative gratitude.” When I realize my place on that scale, I start to feel relatively lucky.

I’ve written about some of these aspects of my case in bits and pieces elsewhere, and people I’ve spoken to on the phone or in person may by now be bored with this list. But I wanted to pull them together under one post on this blog under the general theme of “gratitude.” So, for those who care and haven’t heard this already, here are seven  reasons why I am grateful. I’ll call them my Lucky 7.

 1. How my tumor was discovered. I passed out during a hard workout in a controlled, supervised environment. The folks at the YMCA are trained to handle medical emergencies, and they dealt with mine superbly. After recognizing that I was having a seizure, they called an ambulance. The paramedics got me stabilized and took me to the hospital emergency room (over my initial objections), where a standard battery of tests for seizure cases revealed that there was a mass in my head. I was quickly scheduled for more tests and surgery, and the tumor was removed within 48 hours. How might an alternate scenario have played out? Well, I could have started feeling woozy while working in my yard on a hot day. I might have just come inside to get a glass of water and sprawl out on the sofa for what I thought was just a “nap.” But that nap might actually have been the very same kind of seizure I had at the YMCA. I just wouldn’t have known the difference. When my consciousness returned, I would have just thought I was “waking up” from my nap. I certainly would not have gone to a hospital to have myself checked out. I might have had, say, four more episodes like that with the undiscovered tumor continuing to grow inside my head all the while. Then the sixth time around, let’s say, I might have had such a seizure while riding my Triumph Tiger motorcycle down Interstate 4 at 80 m.p.h. (the “keeping- up-with-traffic” speed). Now, in addition to having a brain tumor, I’m either dead or severely mangled with huge disability complications. Instead, I’m grateful.

2. The tumor’s size and location.  Mine is in my right temporal lobe, which is the area slightly above my ear. Because it was discovered relatively early, it had grown to about the size of a ping-pong ball — as opposed to a grapefruit. It had not had time to grow into any number of sensitive areas that would have made the surgery to remove it far more complex. Because I am right handed, there would have been a greater chance of complications even had the very same tumor been in the left temporal lobe (the left hemisphere of the brain controls motor skills on the right side of the body, and vice versa). When you hear about a brain tumor being “inoperable,” it typically means that surgery cannot be performed without damaging other critical functions such as sight, hearing or mobility. Often, a tumor can only be partially removed for the same reasons. In either of those cases, the follow-up treatments of radiation and chemotherapy must be targeted at reducing a tumor mass rather than killing the underlying cancer. In my case, the neurosurgeon was able to remove all or almost all of the tumor mass. For now, my follow-up treatment can be entirely focused on controlling the root cancer source. I don’t have to worry about already being blind or in a wheelchair. Instead, I’m grateful.

3. The tumor’s chemical makeup. After my tumor was removed, parts of it were frozen for permanent preservation and other parts were immediately analyzed. When I got my tumor’s report card back from the doctors, I felt like a proud parent. It scored high on all the genetic stuff you want it to score high on — indicating that it will be responsive to the standard pill-form chemotherapy regime. I think my tumor has a good chance of going on to college, meeting a nice girl and settling down to start a career and a family. Lots of brain-cancer patients get their tumor’s report card back and discover that it has poor self control and will probably resist the regular chemotherapy regime like an incorrigable child. They have to send their tumors off to reform school, where more exotic drugs or clinical trials become the only hope for managing an incurable disease. For now, I’m not one of those unlucky parents. Instead, I’m grateful.

4. My age, professional training and general outlook on life. If the Pentagon were going to recruit and train a special-forces commando to go have a brain tumor and report back dispassionately on the purely personal aspects of what it’s like, I’d be a good candidate for the job. Sure, at age 49 I’m still in the prime of my life. But I have already lived almost as long as most people could reasonably expect to live even just a century or so ago. I have no immediate dependents, so there is not that immediate worry to blot out everything else. And I’m not so young — as plenty of my fellow cancer sufferers are — that my case automatically becomes all about and only about the tragedy of a life potentially cut way too short. There’s a little boy whose place in line for the radiation machine is just in front of mine. He can’t be more than 7 or 8 years old. He should be in school, or at home watching cartoons. There are no words to capture , let alone mollify, the sadness of seeing him being wheeled out of the treatment room, half asleep and incapable of comprehending his grim situation, before I go in to take his place on the table. There are plenty of young women in their 20s or 30s in the waiting room who are being treated for breast cancer. If I had this diagnosis at their age, I’m sure I would be reacting entirely differently. Being 49 also has other advantages — it means I remain at or near the height of my cognitive power and my ability to understand what is happening to me from a medical standpoint. It means I’m still young and strong and care enough to fight, but I have acquired (enough) maturity to not take it too personally and let the whole experience get lost in an emotional fog of anger and self-pity. Being a journalist by training, I was able to cultivate a sense of detachment when reporting on the misfortunes of others, such as victims of Hurricane Andrew. In this case, the misfortune is mine. I now have total access to the story, from the inside out, but I can also remain somewhat detached, almost as if by reflex.  

5. My health-insurance situation.  I have good group health insurance right now that has carried over from my old job through COBRA. But that coverage will expire on October 12. I could easily right now just be uninsurable and shit out of luck, or at best facing huge premiums even if I were able to find a company willing to sell me insurance as an individual. But thanks to a couple of brilliant financial advisors, I had already been working for several months toward acquiring new group-health coverage through my own consulting company. Maintaining continuous group coverage means you cannot be denied because of any pre-existing condition,  not to mention the mother of all pre-existing conditions. The month of August is the only window each year during which you can apply for such “one-person group” coverage. If your application is accepted, your new coverage can take effect as early as Oct. 1. So when August rolled around, I was already prepared to pull the trigger. I found out last week that my application was accepted and I will be covered under my new plan starting Oct. 1. My premium is just a few bucks more than what I’m paying now, it becomes a pre-tax business expense rather than a personal expense and the coverage may even be a bit better. Do I even need to say how grateful I am for all of this?

6. My support network. I have written at length about the incredible support I have received from my siblings and friends and network of former newspaper colleagues. At the cancer center each day, I see a lot of people who look like they are all alone — either because they are single parents struggling to hold down jobs, or old and forgotten by their relatives, or lost behind a language barrier. First I see fear in their eyes. Then I see relief when their eyes meet my eyes, when I smile at them and they smile back, and when they realize for just that split second that maybe they are not entirely alone. But then the look of fear creeps back in. I cannot imagine what facing cancer is like for them. 

7. My address. This one sounds so trivial, but it makes a huge difference. Many of the other patients I encounter have to deal with huge logistical hurdles just to meet the Woody Allen “80 percent of success is showing up” standard. Some live in rural areas of Florida and have come to the Orlando area to stay with friends or relatives for weeks at a time just to be within a one-hour daily drive of the M.D. Anderson Cancer Center (with gas plus tolls, to boot). Their actual daily treatment, however brief, blows a giant hole in their day just because of the schlep of getting there. I live near downtown, just a mile away from M.D. Anderson. I can ride my bike through a very nice neighborhood to get there. I can even walk there in 15 minutes. When I walk, I’ve often thought of knocking on the doors of all the houses in that nice neighborhood and informing the occupants that, should they ever happen to be diagnosed with any form of cancer, they are incredibly lucky to be located so near a first-class cancer-treatment center. But I think that might be a bit macabre. Still, it doesn’t change the truth. They are (potentially) lucky and I am (actually) lucky sheerly by virtue of our geographic location.

If any one of seven variables above had been dialed even the slightest little bit in another direction, my whole story would be different, and my outlook changed.  When I think about that, and about the ultimate fragility of my random fortune, cancer scares the hell out of me.


11 Responses

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  1. Jeanne Klonr said, on September 2, 2009 at 9:40 am

    Sean, even though I don’t know you personally, I have to tell you I admire your attitude and Having a serious medcal conditon (not 1/4 as bad as yours), I try to have a very positive attitude.

    In a way I am so blessed to have alot of support, especially on those days when everything is a chore. I gather much strenght thru your page, so thank you for having enought courage to speak out, and be pro-active with this cancer!

  2. claudine hellmuth said, on September 2, 2009 at 10:00 am

    I have something that I am grateful for too!! That I have known you since I was 8 yrs old and you’re like a member of our family! big hugs!

  3. ann hellmuth said, on September 2, 2009 at 10:41 am

    And I am grateful for all the good laughs you given me over the decades that we have known each other. And I’m also grateful that I got to be your editor during Hurricane Andrew.

  4. Marnie Martin said, on September 2, 2009 at 10:54 am

    I don’t know you and you don’t know me … but I’ve been friends forever with Ann and Claudine Hellmuth, and I’m following your blog because of their posting on FB. You are an amazing writer, and obviously a strong and amazing human being with tons of courage. I think about you every day. Marnie

  5. paul lester said, on September 2, 2009 at 11:38 am

    I’m grateful your cancer is not the incorrigible child variety. Sending thoughts and prayers to you and everyone else at the cancer center

  6. Lorie said, on September 2, 2009 at 11:47 am

    Came by after seeing a reference to this on Claudine’s Facebook post, and wow, Sean, what you’ve written is so powerful. I just had emergency surgery on a detached retina, pretty serious. I can’t identify with 1, 2, and 3 unless I change “tumor” to “detached retina,” but 4, 5, 6, and 7 hit completely close to home. Your writing has made a difference in my outlook today, and yes, as you conclude–the ultimate fragility of random fortune related to all of the variables is beyond comprehension.

  7. artcricket said, on September 2, 2009 at 2:41 pm

    #7 – four legged friends..not a day goes by without a good laugh caused by the antics of my jack russell terrorist

  8. RebelliousRenee said, on September 2, 2009 at 2:46 pm

    I LOVE reading what you have to say everyday…. and today’s post is as enjoyable as the rest of them have been. I’ve known plenty of people that have beaten cancer…. and all of them have had your type of attitude.

    You GO, Sean…. you’re the best!

  9. claire said, on September 2, 2009 at 2:56 pm

    Sean, you’re having me entirely convinced that you should be grateful! No small feat really.

    For having had breast cancer ten years ago, and a small one at this, I admire you very much. I can relate to a lot of what you’re saying, especially looking at other cancer patients.

    Ten years ago, I felt very grateful for a friend of mine, a doctor, who showed me cancer was not a punishment for past sins, but completely random. Had he not said this to me, I would have felt that in some way I deserved it and would not have ‘fought’ for health. Thanks to him, I had no hand tied behind my back.

    I feel grateful as well for the nurses who took care of me during radiation therapy. They were angels.

    You are an angel as well, as a writer of this blog, and, undoubtedly, to everyone you meet.


  10. Justus Hellmuth said, on September 2, 2009 at 5:59 pm

    Sean: You are a real Mensch–wunderbar

  11. Molly BB said, on September 2, 2009 at 8:49 pm

    Sean – Again, thanks for sharing!

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