Quick brain update

Not my brain

  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.

Luckiest man on the face of this earth

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.

Bragging about my sister Ellen

The first page of St. Odilia's 2009-10 yearbook

  

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.

My Immigration Reform Solidarity T-Shirts

 

   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

Sunday update

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.