I had a great day and wanted to share it here.

First, a quick recap:

• I’m recovering well from surgery.
• I’ve gotten the ok to drive.
• We’re ready to get started with treatment options.
• (And there’s that living Hammer Down thing going on too. See last post)

Today we met with the oncologist. It may have been the best doctor-patient experience I could ever hope to have.

Tina and I were adamant about working with a different oncologist. And that is what we got — a recent transplant to Emory from California with all the right personal and professional qualities that differentiate a good doctor from an amazing one.

I really want to go into detail about how well our appointment with Dr. Read went and how much we appreciate him, but the important thing to convey here is that we had a really positive experience. It makes a big difference.

We don’t have an official Battle Plan yet, but here are the top possibilities:

1. Stereotactic radiosurgery — It even sounds like hardcore tumor ass-kicking. If my radiologist thinks he can zap the last bit of tumor that’s attached to my Sylvian Fissure without compromising my clutch hand, then we’re gonna attack. You see, we can’t just leave a bit of tumor in there and hope it doesn’t cause trouble.
2. Tumor Treating Fields therapy (Novocure™) — I would have to wear a skull cap of electrodes and tote around some equipment. The device creates electric fields that disrupt tumor cell division. No one’s saying this is the solution to brain cancer. In fact, I don’t think anyone is even sure how or why this device is effective fighting tumor growth. But results have been good and I’m a perfect candidate. It’s not invasive. There are no side-effects. I’m glad this is one of my options and that Dr. Read has experience with it.
   We’ll have to travel out of state again to get involved with the Novocure product — most likely Chicago.
3. (More) Investigational Treatment — There are some clinical trials coming down the pike that should be ideal for me if options 1 and 2 above don’t pan out.

Some more details that may be of interest to other brain cancer savvy readers.

Avastin

Avastin is there as an option for me, if needed. But right now, it doesn’t seem to be of any use FOR ME. Dr. Read shared his understanding and belief about the real value of Avastin on brain tumors. I have never been keen to get on Avastin so I’m glad it’s not being pushed on me.

Testosterone

To be as healthy as I can be is a priority. It has been for me all along, but Dr. Read is the first doctor to really consider it part of the actual treatment plan. He’s encouraging me to continue my physical health activities — biking, walking, yoga, strength and endurance training. We tested my testosterone level today. If levels are low, which is very likely, he wants me to start using a supplement. I may get a nice looking body out of this deal.

Other reasons the last couple days have been so good:

• Rubber, steel, asphalt, gasoline and speed — I’m motorcycle riding again and it’s truly good for the soul.
• Family, friends, laughing and loving — I’m having fun and lots of people are helping that happen for me.
• Creating, imagining, sharing and thinking — Working on this blog and putting ink and paint on canvas are great releases.

Surgery

My wife (Tina), mother (Cheryle) and I  arrived at Emory for my 5:30am Friday surgery appointment. We were very excited that I was eligible for the Gliolan (5-ALA) clinical trial. This trial is testing a drug that when ingested, causes tumors to glow red under certain fluorescent light during surgery. This makes it easier to distinguish cancer cells from healthy, normal cells, improving the final result. Although it is a trial, awaiting FDA approval, the drug has been used for over ten years in Europe.

Unfortunately, My white blood cell count was too low on that day and I could not get Gliolan. Doctors had to operate old-school.

The operation took about an hour and a half. I’m told Dr. Olson did consult with me after but I don’t remember it (too doped up). What they removed was 80% tumor and 20% necrotic tissue. A post-op MRI was done, but we have not had the chance to review  it yet with the doctors. It’s possible that they didn’t get it all. Also, they cut along the same line as before. They just used sutures rather than staples this time.

Quick work

Doctors and nurses were surprised and pleased with my quick recovery time. I was discharged from the ICU Sunday at noon. So about a day and a half of hospital care isn’t bad. I had excellent nurses taking care of me, including Tina and Mom.

Photo compliments of photographer and friend John Armitage, Feb 2012

We had lots of emotional discussion today. Tough decisions. After some self-medication, I was able to whittle down all the events of the day to provide you with this concise summation:

I am opting for brain surgery as soon as possible, which is likely to be early June.

I know that leaves out a lot of details. But don’t worry — things aren’t dire. Well, they might be. Who knows? That’s the problem — no one knows. It’s all a big gamble; each choice having compelling pros and cons.

My resolve is as strong as it has always been. It’s just my spirit that’s taken a trouncing. Expect I’ll be fine tomorrow.

I keep thinking that I’m being overly dramatic. But, this is kind of dramatic.

As always, I appreciate the flood of support.

Some of you have accused me of writing a post that inspired you. If I had to share my latest advice, it would be… to love. It’s simple and cliché. But everything we are can really be boiled down to Love — the basic unit of our being. Is this unconscious knowledge? If so, it must be easy to overlook; neglect; take for granted; or underestimate or else societies and our world would be a much more wonderful place in which to live. Don’t wait for a brush with mortality to embrace this. Live this and impress it on the youth.

I don’t wish a “brush with mortality” on anyone, but it seems to be effective.

My final design for the 10th anniversary t-shirt. A group of fine people I’ve had the honor to ride with for over a decade.

Specific updates, in case I’m not able to reach everyone.

• Rat Bastards — I was so looking forward to riding to RHR X. Against odds, I still hold out hope. Shirts will get to you one way or the other, sooner or later.
• Cotton clan — let’s call Florida postponed, not cancelled. Maybe even still on?
• Maiden crew — not sure StapleHead will be ready to rock in time. Come by for a round of Grazers, though.
• Neighbors — forgive my behavior in these coming weeks 🙂
• Georgia friends — I have a week or two to connect before going under the knife. Afterwards, I may be fragile for a while. Don’t take offense if I get a little (more) anti-social.
• Alabama friends — not sure if UAB treatments will continue. We’re not done visiting though.
• R. Phillips — I’ll do my best to keep in touch and get together in the coming weeks. Thanks for the first-hand advice and support. Good luck with your battles.
• Maudsley’s — see you soon.

Tina, I love you.

It would take eternity to explain exactly what all I mean when I say that to you.

Again, a three-sentence update, evolves into a long ramble into the wee hours.

I had an MRI at UAB today. The scans reveal abnormalities that are likely to be either treatment effects or tumor growth.

Treatment effects — The clinical trial is relatively new. Maybe this is just some harmless byproduct of the treatment. (They figure this out as they go.) Maybe it’s no big deal.

Tumor growth — Very bad news.

In order to consider a treatment we must determine what exactly is going on. This means surgery — another craniotomy, similar to the first time.

If it’s a tumor then I’ll be removed from the ICT-107 clinical trial. I would be eligible for some other interesting trials. I would likely begin receiving Avastin (an intravenous chemotherapy). But while they’re in there, surgeons would attempt to remove as much tumor as possible, which is supposed to be good news in some desperate way.

I suppose the best (and less-likely) outcome would be to find that it is just some unexpected, unharmful stuff which can be removed and studied at great benefit to the medical community (or great profit for the trial sponsor).

I’m going to sleep for 14 hours now. I’ll get in touch with Emory for further consultation tomorrow and keep you posted.

But before I go, I want to mention that I know it’s been a long time since I published an update here. I have composed one hundred of them, but none I felt needed to be shared. Today’s post was going to inform you that, rather than post all the time about how well I’m doing, I was only going to post if something bad happens.

Well, I’m right on schedule.

Medical Update

I have completed this months five day stint of taking 400mg of chemo (Temodar). I tolerated it well, as expected, but the last two days taking the drugs left me drained of energy. Two days afterwards, I’m still not operating at full capacity.

Personal Update

Based on more reading Tina and I have done, I intend on increasing my dietary vigilance. More juicing. More uncooked vegetables. Get serious about supplements, specifically vitamin C, astragalus and turmeric.

Up to this point, I’ve been a preacher of positivity. Having “suffered” a couple days of lethargy, I think about the people I’ve met who have been affected much more drastically than I. How does one remain positive when they have memory loss? Mobility loss? Speech impediments? Thought impairments? And even worse conditions?

Clearly I have little to complain about. In fact I often think that my quality of life has improved. I remain positive. I am motivated to keep healthy.

On a lighter note, I got a hair cut. I decided to shave hair from all affected areas and then do the same to the other side of my head so it is symmetric. That left me with about a third of a wide mohawk.