SAME TIME TOMORROW

A very fluid situation

Posted in Uncategorized by Sean Holton on July 31, 2010
Sometimes I wish brains were as simple as cars

 Yesterday (Friday, 7/30/10) featured another wild and momentarily scary ride on the brain-cancer roller coaster. I went in for my regular MRI scan in the morning. It took about 90 minutes instead of the usual 30-45 minutes because my doctors had ordered some extra studies to zero in on two things I’ve mentioned before: The fluid accumulating around my brain and a new spot (thought to be a surgical abrasion) near the edge of my new surgical cavity from the June 2 operation.  

  I wasn’t scheduled to meet my doctor to go over results until this Tuesday. So after the scan, I just went home and got to work on some freelance projects that have been piling up on my desk. I was happily entering the homestretch of the workday and looking forward to a relaxing Friday evening when my cell phone rang. The woman identified herself as my neuro-oncologist’s nurse.

She said: “Doctor Bobustuc has just looked at your scan from today, and he wants you to come to the hospital right now.”   

When I asked if that meant his office at the hospital, she said: “No, you need to get yourself to the emergency room and have yourself admitted. Now. Like, tonight.”   

When I asked why, she said: “Doctor Bobustuc is very concerned that the fluid buildup around your brain is growing rather than diminishing. He is also concerned that the nodule we are watching has doubled in size since June 30.”   

That’s was certainly not the kind of news I was happy to hear on a Friday night less than a week after celebrating a full year as a GBM cancer survivor. But it certainly got my attention.   

 

  Luckily, Dr. Bobustuc himself soon was able to get on the line to explain the situation in further detail. He said I would probably have to have the excess fluid drained ASAP. He said that we would also have to discuss how to attack the growing nodule at the edge of the cavity — which he said the MRI tests suggested was recurrent tumor. He suspected that would mean switching to yet another chemotherapy routine (my third, after being on my second regime for only one month). I asked him if the Big Brain Drain operation would be that very night, and he replied that it might be hard to line it up that quickly or even any time during the weekend. I cringed, suddenly envisioning two or three days laying around in a hospital bed doing nothing but thinking about my brain while watching the latest, relentless footage from the BP oil spill on a small, ceiling-mounted television. So I told the doctor I felt absolutely fine and would rather wait if we could. He asked if I had any symptoms such as headache or weakness in my left side. I told him absolutely not. That pleased him immensely, and he said it was very encouraging. He said rather than rush me into the hospital, he now believed he could simply prescribe me some steroid drugs to ease or prevent brain swelling and that I could manage on my own through the weekend at home. I breathed a big sigh, then headed over to the hospital pharmacy to pick up the new steroid drugs and (hopefully) get a refund on the extremely-expensive-but-now-useless chemo drugs that I had just picked up that morning. Luckily, I was able to do both.

I got luckier still on my way to the pharmacy when I was standing in a hallway and out of an elevator pops Dr. Bobustuc, himself. He was thrilled to see me in the flesh, and said I looked even stronger and better than I sounded on the phone. He felt the right side of my head and said there was no indication that the excess fluid inside was causing any undue swelling — at least not on the outside. He said he thought the fluid buildup might be stemming from irritation caused by the growing nodule, tumor or whatever the hell it is. I guess we’ll find out. Even though it has grown, it’s still pretty small — maybe just the size of a nickel.      

My doctor will spend the next couple days conferring with my neurosurgeon and some other doctors, and I am scheduled to meet him Monday. He told me to be prepared either to be admitted for an additional operation or perhaps to begin a new chemotherapy treatment featuring direct, intravenous infusion. That’s something I haven’t yet experienced on this journey — I’ve been a pill-popper until now. But IV chemo is actually what most patients suffering through other forms of cancer must learn to endure. So I can’t really complain about the switchup.      

I’ll know a lot more next week. But I wrote this post anyway because I didn’t want to cram all this necessary background information from Friday into a future update that will probably contain more news.      

My mental and emotional state is still very positive. I am still lucky to be alive. I am staying calm. Many people with my diagnosis might be dead by now or dealing with multiple, large and inoperable tumors if they’d even made it this far. And until further notice, all I’m dealing with is a leaky brain and a stray, nickel-sized, something-or-other.      

Of course the news could get worse in relatively short order. But no matter what happens, no one or nothing — not even cancer — can ever take the last year away from me. And that’s what keeps me happy.

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One year ago…today (Instead of…I am)

Posted in Uncategorized by Sean Holton on July 24, 2010

July 24, 2010: Today I rode my Triumph home

Today is the first anniversary of the discovery of my brain tumor. I am very fortunate that this GBM tumor was detected and treated when it was, because otherwise my chances of being around to write this post today would have been pretty slim. So I’m celebrating my one year of survival.                

I marked the occasion by riding my Triumph Scrambler to the Downtown Orlando YMCA and having a friendly passerby snap a picture of me in the parking lot. It was in that very parking lot that my motorcycle sat abandoned for most of the day on Friday, July 24, 2009 after I passed out during my morning workout and was hauled away in an ambulance. Regular readers of this blog know the rest of the story.                  

As today ticked by, hour by hour, I made up a fun new game that I’ll call “Instead of…I am…” I relied mostly on my recollections of that day a year ago but I also referred to my medical records to help me reconstruct where I was and what I was doing at each horrible hour and miserable moment a year ago today. Then I gleefully compared it to what I was doing at that time today.                  

 Here’s how the game went:                  

10:30 a.m.:  “Instead of (slumping over in a chair and falling to the floor in a public place after having a seizure), I am (sitting  upright on my sofa happily eating a bowl of fruit and watching the penultimate stage of the Tour de France).”                  

11:30 a.m.: “Instead of (being parked on a gurney in a hallway outside the crowded ORMC emergency room), I am (taking my dogs Chopper and Kaley out for a fun romp in the backyard).”                   

Noon: “Instead of (giving an ER nurse my complete family medical history), I am (firing up the Scrambler in the garage and heading out to meet a friend for lunch after making my quick stop at the Y and mailing a card to my nephew, who will be at summer camp next week).”                  

12:30 p.m.: “Instead of (tossing and turning on that uncomfortable gurney while wondering how long it will be before I’ll be bumped into at least a curtained, semi-private alcove in the ER), I am (ordering an Italian Chopped Salad at the  Crispers restaurant in Winter Park Village).”                  

1:30 p.m.: “Instead of (getting a CT scan of my head following a chest X-ray, as per standard procedure for seizure patients), I am (zooming back home on my Triumph to beat a midsummer rainstorm).”            

2:30 p.m: “Instead of (being told by an attending ER physician that the CT scan had detected a mass in my right temporal lobe that looked like a malignant brain tumor), I am (taking a snooze on the couch and thinking about what I’ll make for dinner tonight).”            

4:00 p.m.: “Instead of (working my way through a frantic round of calls to my brothers, sisters and friends from all over the country to let them know that I’ll be having brain surgery in two days), I am (sitting down to write this blog post).”             

And so on. I won’t subject you to more. But the game can go on indefinitely, and anyone can play. You don’t have to have a brain tumor. Just pick any really crappy day from your life (it doesn’t even have to be an anniversary date) and line it up side by side with the really wonderful day that I hope you are having today. As you can see from my July 24, 2010 activity list, the definition of a “really wonderful day” does not have to be limited to a day of great excitement or memorable accomplishment. It can be a day filled with the routine and the mundane. The only requirement is that you be alive.  And if in addition to being very alive you are very happy, you win. Just like I did today.           

Happy July 24, everyone.             

The first mile

Posted in Uncategorized by Sean Holton on July 19, 2010

Dipping rear tire in Bellingham Bay

 Last August I posted something here that I called The Last Mile, which was a recollection of a coast-to-coast bicycle trip I took in 1997 and the many lessons I learned along the way that were helping me in my current journey fighting brain cancer. Today I thought of that bike trip again because a woman named Beth Clark posted a comment telling me that she, too, is a GBM (glioblastoma multiforme cancer) patient, has found my blog and would like to compare notes on our treatment and  prognosis. Beth hasn’t yet given me all the details of her case, but she said her prognosis (like mine) is looking pretty decent.      

Over the months I’ve been writing this blog, I have had many strangers whose lives have been touched by cancer reach out to me — including other GBM patients, their loved ones or their survivors. That has been one of the biggest rewards of writing my story. But Beth’s note triggered other memories because she happens to live in  Bellingham, Wash. — the city on the Pacific Coast where my bicycling adventure began on June 8, 1997. That place will always hold special significance for me. So in my response to Beth, I shared with her some specific memories I have of  her city that I did not include in the earlier post about the bike trip. And in doing so I realized that even before I’d ridden the first of the 5,100 miles of that bike trip, I was already learning valuable lessons that I’m still applying today as I deal with this nasty condition. So after I sent my response to Beth Clark, I thought I’d copy what I wrote right here on the blog for anyone else who might care. My e-mail to Beth is posted in italics below, along with some pictures from my trip and links I’ve added to explain some of the local Bellingham references:                    

    

 After flying into SEA-TAC airport and meeting one another on June 7, 1997, our group loaded into vans and headed up Interstate 5 to Bellingham to camp for the night at Shuksan Middle School. As I was setting up my brand new tent on the football field, one of the tent poles broke. And here I thought — “After all this preparation for this journey, I’m screwing up even before we even ride the first mile.” But, lo and behold, a cyclist who had made the same coast-to-coast trip the previous year happened to be there to ride the Washington leg with our group. He saw me struggling with my tent, and he came over to help me fix the broken pole. He also advised me that breakdowns and mini-crises like that will happen all along the way, and that you should never let them panic you. All problems on a bike trip are fixable as long as you remain calm. LESSON LEARNED: Some of the best help you’ll ever get in life will come from people who have already traveled the road you are on.           

We ate dinner that night Izzy’s Pizza, [EDITOR’S NOTE: YOU REALLY SHOULD CLICK THIS LINK TO SEE WHAT LATER BECAME OF Izzys Pizza ] and came back to the school to sleep. On the morning of June 8, we packed our gear, left the school and wound our way through the streets until we reached Bellingham Bay for a “tire-dipping” ceremony. We dipped the rear tires of our bikes in the water there (12 weeks later, we would dip our front tires in Gloucester Bay when we reached the Atlantic). Then we found our way out of town and followed the beautiful, winding route south along Chuckanut Drive. After many miles, we needed to take a bathroom break but could not find a rest stop. So a group of us pulled over at a roadside view point. We stood there taking in the gorgeous view of the San Juan Islands not taking our eyes off the horizon even as we picked our way down a secluded, wooded trail to find relief. It was at that point that I looked down at my feet and realized I was just one step from the edge of a steep cliff. Had I taken that one more step, I most surely would have fallen off the cliff and suffered broken bones or some other serious injury that would have meant the end of my trip. So the fact that I happened to look down at that instant made me feel as if some guardian angel of bicycling was watching over me. So I made it to Newhalem that night, and over the Cascades the next day, and was on my way. LESSON LEARNED: It’s fine to keep your eyes on the big picture, but it’s how you handle all the seemingly insignificant steps along the way that will make you or break you. Even if it’s to do something as simple as taking a piss.            

Somehow, I think both of those lessons I learned in Bellingham and still remember 13 years later are helping me deal with GBM today.             

The cliff on Chuckanut Drive that almost got me