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.
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.
Today was four weeks to the day after my June 2 surgery, and I celebrated with some more good news. I had an MRI brain scan done this morning at Orlando Regional Medical Center’s Lucerne Pavilion and a follow-up meeting this afternoon with Dr. George Bobustuc, my neuro-oncologist.
The scan came back almost as clean as the iconic Homer Simpson scan pictured here, but there is still some residual fluid around the outer edges of my brain that is part of the post-surgical healing process (and, unbelievably, is not merely Budweiser). Either way, it needs to go away. The doc also said he wants to keep a close eye on a small spot that he called a “nodule” near the margin of the new cavity. He thinks it most likely is a scar or scab resulting from the surgical incision, and that it will probably heal naturally on its own. But we’ll have to monitor it carefully, so he wants me to get another scan in about four weeks.
The best news is that Dr. Bobustuc now believes that my original, pill-form chemotherapy drug (Temodar) has not failed — as was feared in May when the doctors identified what they believed to be recurrent tumor cells and opted for the second surgery. As it turned out, the doctor explained today, the pathology report on the removed tissue was unable to parse a sufficient quantity of live tumor cells even to do an in-depth analysis like the one that was done after my first surgery. So that means most of what was taken out this time was either healthy tissue or necrosis (dead cancer cells) that had been killed off in my earlier radiation and chemo treatments. Yay Temodar! Maybe we should throw a bunch of those pills at the BP spill in the Gulf.
The only issue with Temodar going forward is that it is so powerful that I need to scale back the dosage to reduce its effect on my bone marrow, white blood cells and immune system. I’ve been taking it now and it’s been keeping the cancer in check since last August. So now the doctor wants to keep me on lower doses of Temodar and bring in a new, pill-form chemo agent called Xeloda — which is not as hard on the bone marrow. He also will have me taking daily doses of Celebrex (the anti-arthritis pill, which promotes the effect of cutting off any potential blood supply that tumors need to grow). So starting next week and until further notice, I will be taking all three drugs on a 14-day cycle (7 days on, 7 days off, 7 days back on, etc.). My next scan will give us an idea of how it’s all working.
The bottom line: Yes, I still have brain cancer. But long after it might have taken away my life if my case put me in the normal survival range, it is not even starting to beat me. And my doctor reiterated that he expects to be treating me “for many, many years”. There will of course be rough patches along the way, but all in all I am happy with that outlook. It’s as least as good as the U.S. draw against England during World Cup group play. And that was pretty damned exciting.
July 24 will be the one-year anniversary of my diagnosis. At that point, I will consider myself an official cancer survivor. I may even get a T-shirt out of the deal.
I’m still resting a lot at home, but I’ve been waking up each day feeling stronger. I went to see the neurosurgeon yesterday (Thurs 6/10) and he said I was healing really well from my June 2 surgery. He took all the sutures out and told me I really didn’t need to even wear a bandage on it anymore. I’m cleared to drive again. Maybe I’ll even get back on the motorcycle next week. My headaches are also gone. He showed me the post-op MRI of my brain and it looked really clean — no “areas of enhancement” whatsoever. That means they were able to cut out everything they were going in after. They also didn’t have to touch any areas of my brain that would affect short-term memory or any other functionality. So I guess I can kiss those “luxury side effects” goodbye.
The tissue analysis showed that much or most of what was removed was scar tissue or “treatment effects” (ie., dead cells) left over from previous radiation and chemotherapy treatments. But there were indeed some live cells of recurring tumor among those that were removed. So surgery was definitely the right call at this time. Now I’m in a phase where I must wait until my oncologists recommend a new chemo maintenance regime. As was the case before, the goal now will be to keep killing off the microscopic GBM cancer cells that are probably still swimming around in there somewhere but which do not show up on MRI. I’m ready and eager to rejoin that battle. At this point, it doesn’t look like my follow-up will involve further radiation treatments because, as my doctor put it, “There’s not really anything we can see to shoot at right now.” I like the sound of that. I also like the tone of his voice when he assures me that everything I’ve gone through in the past week has definitely kept me on the track for long-term survival — meaning 5 years, and perhaps more beyond that. Who knows what the college football conference lineups will look like by that time?
Speaking of sports, I told my brother Tim yesterday that the best way I can sum up my medical situation, my gratitude for all the support I’ve received from family and friends and my personal feelings about the whole experience right now is by channeling the famous Lou Gehrig ”appreciation day” speech at Yankee Stadium in 1939. The signature audio effect of the speech is the echo of certain key words over the loudspeaker. I first heard this speech when I was a little kid, and it’s been echoing a lot in my head these past few days. Here’s what Gehrig said (I added the echoed words in italics):
“Fans-fans-fans-fans-fans, for the past two weeks-weeks-weeks-weeks you have been reading about the bad break I got-got-got-got. Yet today I consider myself the luckiest-luckiest-luckiest man on the face of this earth-earth-earth-earth.”
Call it corny, but after everything I’ve been through that’s really how I feel right now, too. Lucky? You bet. But unlike Gehrig, I’m not saying goodbye to anyone. I can’t wait to get back to work and life. Thanks to all of you who have helped me with each step along that journey.
Many regular readers of this blog are also good friends of my little sister Ellen, who has been taking care of me since Saturday and who is flying back home to Los Angeles today. I just wanted to put up a quick post to show you how proud I am of Ellen and of what she does. She is the development and marketing director for a Catholic, parochial school that serves the economically stressed community in south-central L.A., and as the attached page indicates — she is extremely valued for her innovative work there. It’s the first page of St. Odilia’s 2009-10 yearbook. You can read it for yourself. I just wanted to share this with the world. Ellen’s colleagues and students have been keeping me in their prayers since last July, and I love them for that. I’m so proud of you, Baby Sis.
I got some questions and nice comments about the “Grandson of an Immigrant” T-Shirt that I was wearing the day I came home from the hospital after brain surgery. It’s just of one of many T-shirts I designed myself and that are available online at my Cafe Press Shop.
This is a series of T-shirts enabling Americans of all backgrounds who support comprehensive immigration reform to show solidarity. There’s a shirt here for everyone: Choose a front that suits you best, whether you’re an immigrant, descendant of recent or long-ago immigrants, African-American, Puerto Rican or Native American. My grandparents immigrated from Ireland, which is why I have the “Grandson” one for myself. The shirt fronts are customized with the message that best suits your situation and the shirt backs all carry the same message: “I Support Immigration Reform” surrounding an American flag.
These are ideal T-shirts for diverse groups participating in immigration reform rallies. The regular versions have the customized message on the front with the flag on the back. Economy versions are basic Tees printed on front side only, with message and flag, and a blank back.
See all the designs on all the shirts at this link where they’re available for purchase in all sizes from $9.99 to $18.99. By the way, since Cafe Press actually buys the blank shirts and prints the designs on them, they set the basic prices and get most of the money. As the designer, I just make a dollar per shirt: http://www.cafepress.com/best59
Hey everyone, just checking in to thank you all for the wonderful messages and phone calls and also to give you a quick update on how I’ve been doing since I got home from the hospital late Friday night. Because of the nature of the operation this time, there’s been significantly more pain — not horrible, unbearable pain, but just like a really bad headache. Last time most of the pain was limited to the area immediately around the surgical incision. This time, they took out more brain tissue so there’s a bit of an air pocket in there that is allowing for swelling that causes pain. Sometimes if I move around too quickly my brain feels like it’s clattering around there inside my head like an old eight-track tape in an empty glovebox.
But I’m on painkillers as needed as well as steroids to lessen the swelling, so it’s all very manageable. Besides staying on top of the pain, I’ve been getting tons of rest. That feels great just to lounge around with eyes closed and get the sense of myself healing. I’m being well fed and taken care of by my sisters Kathleen and Ellen. Kathleen and her husband Richie left this morning, and Ellen will be here until this Wednesday. After that, my brothers will be coming to town. So I should be in pretty good shape a week or so from now. The dogs are very happy to see me too, and haven’t missed a walk or a meal.
All in all, the docs are very happy with the results of the surgery. They cut everything out of there they were going in after, and they didn’t have to take as much of my right temporal lobe as they thought they might have. That means I’ll be stuck with a decent short-term memory capacity after all. I’ll go in for a follow-up visit sometime next week to get the sutures removed and probably to learn the results of the tissue analysis from what was removed. There’s an outside chance that the “area of concern” on my pre-surgical MRI could all have been a bunch of scar tissue and other so-called “treatment effects” from radiation and chemo — as opposed to new tumor cells. That would of course be the best possible outcome. But either way, I’m going to be in good shape and will continue to be able to manage this thing with follow-up chemo if need be.
There was some weird stuff about my hospital stay after surgery. First of all, nothing is more frustrating than having a broken wall clock in your recovery room. My whole time in ICU, I was unable to orient myself in time and had no idea how long my surgery had taken or how long I was in there. My surgery went from around 2 p.m. to 5 p.m. Wednesday, and I spent the night in ICU all jacked up on morphine. The clock was stuck on 4 p.m. (or a.m.?) the whole time. They moved me upstairs Thursday morning and started feeding me regular food in a regular room on the neurological floor. By Friday morning, my neurosurgeon had decided I was doing well enough that he could send me home once I got an MRI. But there’s the rub–I waited around in my room 8 hours before I could get in for the MRI — so it was very frustrating. And I also learned that the second hardest thing after an MRI to get on short notice in a hospital is a simple Tums tablet. Laying around on my back all day was starting to give me heartburn — but when I asked for a Tums they had to formally request one from the drug dispensary. It took six or seven hours to get it to me. Remind me to start a future, lucrative career as an illegal Tums trafficker in a hospital. I think I could make millions.
That’s about all the news I have to report for now. Not much, I know, but I just wanted mainly to acknowledged all the support I’ve received from folks on Facebook, by e-mail and in phone calls. I’m really a bit too tapped out to take calls — but the e-mail stuff I’ve been able to keep up with okay. You have no idea how much your love, good wishes and support have meant to me. They truly bring me the power I need to heal.
I am confident I will be back up and about and back to work in fairly short order. Thank you for all of your help in getting me there.
I’ll keep updating things here on this blog as much as I can.
Today I gave my docs the green light to schedule my second brain surgery for next Wednesday afternoon. Everyone — including the outside experts I consulted — agrees that this is the best move to make right now to keep me on track for long-term survival. GBM tumors are not to be trifled with. The plan is to go back into my head through the same portal that they created for the first surgery – as if it were the door to a cuckoo clock. I have authorized the neurosurgeon to remove a 2.3-inch section of my right temporal lobe surrounding the old tumor cavity and including the small area of new concern that showed up on my latest MRI, as well as a bit extra for a margin of safety. Then they’ll just close the cuckoo-clock door and wheel me off to the recovery room. The whole thing shouldn’t take more than a couple hours.
I expect to have a hospital stay of 2-4 days, and have human-wave attacks of siblings rolling into town to take care of the house and the dogs and me until I get back on my feet. That shouldn’t be long at all, based on how I bounced back last July after surgery. And this time I won’t be getting wiped out by follow-up radiation. But depending on what the docs learn from the tissue specimen they remove, I will resume some form of a chemotherapy maintenance program sometime soon.
This surgery will not affect my day-to-day functionality at all going forward, the surgeon says. One of my other docs described this as “some of the most useless real-estate in your brain.” (Thanks for the topical metaphor, Doc. But I’m hoping your medical opinion would have been the same even before the housing bubble burst.) If I were a left-hander, the story would be different. But as it is, the only aftereffects I might experience are some small changes in my short-term memory capacity (which will give me a good excuse for blowing off chores and showing up late for meetings) and some lessened ability to distinguish certain musical notes from one another (so I’m already throwing out my John Coltrane DVD library and replacing it with the Slim Whitman catalogue).
I’ve also submitted the following list of additional side-effects that I’d like to have included with my brain-surgery package:
- The sudden inability to hear the sound of leaf-blowers, right-wing TV pundits and other annoying noises.
- Onset of total blackouts when the Orlando Magic fall 10 points or more behind in the fourth quarter of any playoff game.
- A rare condition known as “Facebook Blindness,” which will render me unable to detect all status updates and discussion threads relating to Farmville or the final episode of “Lost.”
- The mysterious capacity to enter and win this year’s Tour de France, the premier, 20-stage, 2,200-mile bicycle race which begins July 3rd and runs through July 25.
So there it is. My docs are checking with my insurance company to see if those and other deluxe side-effects I’ll think of later can be included under my current coverage plan.
Meanwhile, thanks for all your continued support on this blog. It’s been a huge part of getting me through this ordeal with my spirits high. I’ll check back in with another update as soon as there is news worth reporting and I am able to report it.
PS: I’m accepting any and all additional suggestions for “deluxe side effects” that I can request, so if you have any good ideas please leave them in a comment. This game might even be more fun than playing Farmville.
Just got some good news today: I’m not going to have to pack up and travel to get the outside opinion I requested. The tumor board at the Johns Hopkins Comprehensive Brain Tumor Center in Baltimore has agreed to review my case history and MRI films and render their treatment recommendations in a few days. So I’ll just be sitting tight and waiting for my docs to call with the news. My expectation is that some level of surgery will be part of the recommendation and will be scheduled soon. But at least this time around I will be working off of a strong medical consensus and won’t be rushing to make the decision myself.
(PS: If you’re interested in keeping up with new posts on my blog as this thing plays out, just scroll down the right hand side and click where it says “Site Feed” and follow directions from there to get alerts)
“If everybody is thinking alike, then somebody isn’t thinking.” — Gen. George S. Patton
I have just experienced the most emotionally exhausting, medically educational and ultimately hopeful week of my treatment since my GBM-StageIV brain tumor was discovered and surgically removed last July. In fewer than five days, I’ve gone from thinking my maintenance treatment was proceeding smoothly, to being told my tumor had recurred and may require a radical second surgery next Wednesday, to learning my doctors on what is called “The Tumor Board” were deeply divided about how to proceed and finally to being told my prognosis for long-term survival never looked better and there’s no reason to rush into surgery right away. The big picture looks so good, in fact, that I might now be shipped off to a world class brain-tumor center for a day or two to enhance and refine a treatment plan that could help me outrun this terminal illness for many years to come. It may even be one for the medical history books. Seriously.
If you think reading that last paragraph was complicated, try living through it. This takes a long note just to lay out the basics, so I’ll keep the blow-by-blow simple and no-nonsense (except for the Gunsmoke picture, which I thought was funny). I can’t take the time to describe my emotions or all the complicated medical details at each stage, so you’ll just have to imagine the medical details and insert your own emotions as needed.
Monday afternoon: I went to MD Anderson Cancer Center in Orlando for my routine, bi-monthly MRI brain scan to monitor my response to treatment. The initial report from my primary neuro-oncologist was that the scan looked clean and stable, but that he couldn’t give me a definitive report until a dog-ate-my-homework variety computer glitch was solved: He was unable to access my March brain scan for a side-by-side comparison. Okay. Fine. I went home 95 percent happy and wrote a smartass blog post about how no one is immune from the tortures of the I.T. Department.
Tuesday evening: My neuro-oncologist called me at home and left me a voicemail saying he had finally accessed the March file and had discovered that, indeed, the area around my tumor cavity showed some small changes that might be either accumulating cells killed off by radiation and chemotherapy – or, more alarmingly, new tumor cells. Either way, he said he’d probably be switching me onto some new chemo pills and ordering a one-time jolt of radiation. But since it was a voicemail, I couldn’t ask any questions. I went to bed uneasy (and also pissed at the Orlando Magic for losing Game 2 at home to the Boston Celtics).
Wednesday evening: My neuro-oncologist called me at home and we had a live conversation. He explained the situation in more detail, including that the radiation would in fact be something known as “stereotactic radio surgery” – in which extremely powerful beams of energy are combined and wielded almost scalpel-like to removed unwanted cells inside the body. It’s an outpatient procedure that takes about 4-6 hours because it’s more involved than a simple radiation treatment. My oncologist said he was going to present his plans for me to the hospital’s six-person “Tumor Board” that was meeting at 6 a.m. the next day to review its portfolio of cases. The board includes my neuro-oncologist, my neurosurgeon, my radiation oncologist and three other cancer doctors and surgeons I don’t know. I went to bed uneasy again. Still, I thought, this is going to be manageable.
Thursday morning: I had a previously scheduled appointment with my neurosurgeon, who always likes to meet with me after each MRI to discuss findings. This time he would be coming straight from the Tumor Board meeting so he could give me the latest info in person. I figured he would just wave me on through the toll booth of treatment changes proposed by my oncologist. But then came this shocker: He informed me that the Tumor Board had voted 5-1 to overrule my oncologist and were recommending immediate surgery to remove most of my right temporal brain lobe (where the cancer is centered). He insisted that approach would keep me on the curve for long-term survival with minimal impacts to my physical functionality. He said he would give me time to decide whether I wanted to proceed, but was tentatively slotting the surgery for next Wednesday. I was to call back his office by Friday (today) with a final ‘Yes’ or ‘No.’ This news felt like a kick in the gut. I’d gone from the happy words “clean scan” to the scary phrase “temporal lobectomy” in less than 72 hours. I had to cancel plans for a trip I was making to Kansas City next week. Then I began consulting with my family and friends, my siblings made arrangements to fly down here to help me through next week, and with each succeeding conversation I grew more comfortable with the idea of surgery. “Maybe this will be the way to root this thing out once and for all,” I thought to myself. I went to bed feeling pretty good, but still freaked out by the roller-coaster ride.
This morning (Friday): I wanted one more face-to-face conversation with my neuro-oncologist because up to this point I still had only talked to him on the phone about the Monday scan results and his subsequent treatment recommendations. Besides, I wanted to hear him explain firsthand about being overruled by the Tumor Board and whether he would eventually be on board with the surgery plan. So I went to see him in person. He surprised me by saying right up front that the board’s discussion had been quite heated and that he still, absolutely, did not agree that surgery was necessary at this point – and he told me why. He thinks that even if the tumor has returned, it is growing so slowly that we can afford another month trying new chemo drugs to see if they stabilize it. At that point, if the answer is no, we can do the surgery then. He explained that he sees successive surgeries as a “diminishing returns” option based on “backward-looking data”, not a long-term strategic approach. He told me he would support whatever decision I made, but that I needed to call him back before 3:30 p.m. I left his office thinking, “Crap. My expert doctors are in disagreement, and I’m the one that must make the ultimate decision based simply on whatever gut instincts I managed to accumulate over a 25-year career in an industry that is now going down the tubes.”
Friday afternoon: I began consulting again with family and friends and doctors, and felt like I was racing the clock. I put calls in to the office of my neurosurgeon and radiation oncologist. I asked them if there was time to arrange for an expedited, independent, outside review of my case to help guide my decision. They’re doing that. Meanwhile, the deadline for giving the green light on the surgery passed – the neurosurgeon’s scheduling assistant had gone home for the day. So I told my siblings to cancel their travel plans. It would be at least the following week before I had surgery. I had decided that much, anyway. Then my radiation oncologist (who had supported the immediate surgery option) called me back – not once, but TWICE — to share the most encouraging information of all. He had gone back over my files in even greater detail and convinced himself that my response to treatment so far has been absolutely terrific – notwithstanding signs of the recurring tumor. He said that even if it has returned, it is growing so slowly that we have time to pick our path carefully. “You are in a great position here ,” he said. “We have a great shot at long-term survival. Let’s not squander that opportunity.” He actually said that in all his years treating GBMs in a variety of prestigious institutions, he cannot recall a case as promising as mine.
So he told me he is recommending not only that we take the time to get the outside opinion that I asked for, but that I actually travel to a place like Harvard, Duke, Johns Hopkins or MD Anderson Houston for a couple of days so they can meet me personally and review my case and make their recommendations on both surgical and chemotherapy options. Those are the top four cancer centers in the U.S., if not the world – particularly for brain tumors. My doctors are great, but it will give them an incredible boost to have this outside advice to guide my future treatment. The radiation oncologist actually sounded excited about the prospect of this exercise.
That’s where things stand now: No surgery next week. The Tumor Board members will confer over the weekend, and our goal by Monday is to have picked a center and finalized a travel plan. And then after that, maybe more surgery, maybe more chemo. At least the final decision won’t be in the hands of a washed-up newspaperman working frantically against his biggest and most important deadline ever.
Lesson No. 1 of the week: Never be afraid to ask for a second opinion.
Lesson No. 2: I am lucky to have doctors who are so passionate that they fight over how to treat me, but then show willingness to push the “Stop” button on the standard-treatment, Tyson-chicken-factory patient-processing line and take time to consider the best outside advice available. That — and the fact that they are able to air their own disagreements so vividly in front of me — is proof that I am in great hands.
Lesson No. 3: I love my family, and I have some pretty incredible friends. (PS: Thanks to my sister-in-law Julie for the Patton quote at the top. It was perfect for this post.)