This blog picture is of the brick that Tina and I bought to support the 1996 Olympic Games in Atlanta. The inscription, vous et nul autre (you and no other), is the commitment we made to each other that year when we got married.

Monday night, we read in the July 2012 issue of Atlanta magazine, that Dr. Ian Crocker is one of Atlanta’s Top Docs. Ian was my radiation oncologist up until last October when we no longer needed his services. We liked him very much.

Tuesday morning we met with him to discuss stereotactic radiosurgery. Remember that the surgeon left a small bit of tumor in my brain rather than risk compromising my left arm function. Our thinking was that he could blast the remaining tumor with high-powered x-rays and make me tumor-free without damaging healthy cells.

Dr. Crocker let us know that radiosurgery is not the solution we hoped it would be. Because that area of my brain had already received the traditional radiation therapy dose of 60 Gray, more radiation was likely to lead to tissue necrosis — dying cells. Dying brain cells could mean… all sorts of unpleasant issues. Even if he were able to successfully blast away the rest of the visible tumor, there are likely to be lots of microscopic cells that are just waiting to sprout into tumors that he could never eradicate. Too much risk for not enough reward.

Although the doc didn’t have any good news for us, he delivered the news compassionately yet straight-forward and professionally. He answered all our questions. He cared. I agree with Atlanta magazine — he’s definitely a great doctor.

Plan B

Plan B is to pursue the Novocure product. I’ll have to wear strange head gear and carry a sack of electronics. But that’s a small sacrifice for being able to live longer. Right? I just heard from Northwestern in Chicago that they can’t recommend Novocure alone for me. They suggest I consider other standard of care treatment, like Avastin in combination with other chemo drugs. They made no effort to explain why. It seems like just a turn-down letter.

It’s getting difficult to remain positive. On to Plan C, I guess.

UPDATE: This just in. Apparently, Novocure is back on! A determined wife is hard to stop!

Survival Numbers

This is not a very pleasant topic to think about. If you’re particularly sensitive, just skip it. “Knowledge is power” is my stance. We already know that 15 months is the median survival time from initial diagnosis and that’s with optimal treatment, which I think I have received. Median survival from the time of tumor recurrence is only 3-5 months without additional effective treatment. This data puts my expected death date around the end of 2012.

Novocure can potentially slow or reverse tumor growth. But as far as extending survival time, it’s not really any better than the best available chemotherapy. So maybe that buys me another six months or so (statistically). The big advantage is quality of life. There are not really any side effects to deal with.

Don’t worry — I still feel like miracles happen. I expect to beat the odds. But plenty of discouraging things have happened to me. The standard chemo isn’t effective on me. The trial wasn’t helpful. Radiation is out of the picture. Future surgeries are risky. A Novocure provider isn’t interested in helping me. I need to find something effective on this tumor.

Big Questions

I’ve spent some time considering my options and the implications of my choices. It’s easy for thoughts to wander into philosophical subject areas. What’s life all about? What (if anything) matters? I think I’d like to live a long life, but does it matter whether I have six months or six years? I know some people will miss me, but life goes on.

Do I continue with experimental treatments and become a health nut? Or are there better ways to spend my time, money and current good health, like spending time with friends and family and experiencing the wonders of this world? With no children, I have no responsibilities really.

Don’t get the wrong idea. I’m not depressed about all this. It’s more like disappointment with a twinge of anger and frustration. Luckily this weekend a pack of good friend are traveling to Atlanta to take me to a rock show. There’s nothing like getting together with old friends to relieve some stress and aggression.

Neurosurgery Follow-up

Today, eleven days after brain surgery, I returned to Emory to discuss the surgery, my condition and next steps.

The wound is healing well so they removed the stitches. Dr. Olson explained the post-surgery MRI to us. My first craniotomy back in August 2011, resulted in removal of all of the tumor (except the microscopic bits). This time, they estimate that they removed about 90 percent of the newly grown tumor. There was some tumor attached to the middle cerebral artery which is one of the three major paired arteries that supply blood to the cerebrum. Specifically, the sylvian fissure was affected. Attempting to remove tumor attached here carried the risk of impairing the use of my left arm. Olson decided it would be best to fight that part of the tumor by other means. Unfortunately, we don’t know if anything will be effective. The standard chemotherapy, temozolomide, that I was taking has not proven to be very effective for me. Also, the immunology trial I was involved with doesn’t seem to have been very helpful either. This doesn’t leave us with anything very medically hopeful. But let’s not forget that I do feel good and don’t have any neurological deficits.

Reality Settles In

Since the beginning of my cancer ordeal, I’ve maintained a gut feeling that I’m fine; I’m going to be fine; and that there’s no need to tackle any bucket-list activities. My really good physical, mental, emotional and neurological health had made it easy to feel confident and enjoy life without real worry. But the tumor recurrence has dealt me a thought-provoking blow. This cancer is as aggressive and devastating as the statistics reveal. I could die — soonish. That’s quite a revelation to think about.

Keep Calm and Carry On

We don’t yet know what the plan moving forward is going to be. We did not meet with an oncologist today like we thought would happen. Here are our expected options:

1. Choose another clinical trial — Not too exciting. These trial’s are all experimental and meant more for future research rather than saving me. Potentially better than doing nothing but nothing to pin hopes on.
2. Reinvigorate our alternative treatments — In the beginning I was very diligent about meditation, acupuncture and supplements. As time went on with good MRI results, I let these activities slip a little. Tonight, Tina and I went to a therapeutic yoga class. It felt really great. I am strong and yoga is absolutely beneficial to my total health. I will look to enhance my meditation practice and go back to acupuncture, too.
3. Maintain dietary control — With good MRI results to celebrate and our recent birthdays and wedding anniversary, we reintroduced alcohol to my system. We used to love celebrating with booze in all it’s amazing forms. I don’t think an occassional indulgence opened the door for the cancer to come back, but I am willing to sacrifice that luxury if there is a chance it helps. I’m going to get back into controlling the alkalinity of my body; oxygenating my blood; taking natural immunity supplements; eating organic. My former passion for cooking has returned too.
4. Positivity flow — I was convinced that passionate intentions and thinking influence real outcomes. I devoted time to this concept but had also let it wane. I now aim to reincorporate this type of intention into my daily life. I’ll battle this cancer with every resource I can muster.

Personally

I’m still intent on having fun and exploring myself and relationships. I’m having a great time connecting with friends and neighbors. I have been painting and drawing, introspecting and writing — nothing worth a damn yet, but it’s an interesting, often frustrating, exercise in self-discovery.

Burdened

The person most burdened by this life-situation is unquestionably my wife, Tina. That is the greatest tragedy for me.

I don’t have any fear of death impeding me. Rather, the desire to live and live well compels me. That’s why I titled this post “Hammer Down.” Time to live life full throttle.

Medical Update

All is well. All seems well.

I try to keep informed about glioblastoma — current research, survivor strategies and such. But every story, every video, every medical article always states the grim statistics of this aggressive cancer. It’s a constant reminder that Death looms near. Physically, psychologically, emotionally, I continue to feel very well. I consciously (try to) believe that I’m healed. But I can’t escape the thought that chances are good that a tumor is going to catch me by surprise one day. This thought motivates me to keep up the good work. But it’s hard not to play that game in your head: What would you do if you only had a year to live?

Personal Update

On the Road Again

Today was the official end of my driving restriction. Six months of no motorcycle riding had sort of worn away at my “need” to ride. So I wasn’t as excited about taking the bike out today as one might expect. It was a clear day but very windy and cold, so I decided just to do a lap around the block to say I did it. I have to admit — it felt GREAT! A twist of the throttle automatically revs up a smile.

Photo Shoot

My friend, John Armitage (www.armitagephoto.com), asked if I would sit for some photos so he could experiment with “painting” with light. I don’t know the technical explanation but these images were taken in the dark. The camera shutter stayed open for as long as he wanted (minutes at a time) and picked up light from a flashlight that John shined on what he wanted to be visible. These photographs have not been manipulated at all. The “light” it looks like I’m holding is John wiggling a flashlight around and the last picture is a sparkler behind my head.

Be Aware of What You Eat

Here’s my request for anyone still eating the standard Western diet. Think about how nice it is to be healthy. Consider that what you eat dramatically affects your health. Don’t trust advertising, packaging and marketing. Learn how to eat in a way that will keep you healthy with less dependency on medications.

If you need a place to begin, then read the book, In Defense of Food: An Eater’s Manifesto by Michael Pollan. Then pass it on to someone you care about.

Rock Show

A must-see concert came through town so I went. I went alone. (I usually go to shows alone, plus I don’t have any friends in Atlanta that share my music preference anyway.) I was a little tentative about being there alone though. I wondered if the loud volume and strobe lights could trigger a seizure. But I survived unscathed. I was probably the only person in the place not drinking and the smell of marijuana was all around. But I probably looked the shadiest of all — ducking into the foyer three times to pop my pills (anti-seizure, anti-nausea and chemo).

An interesting thing happened at the end. I was at the back of the hall. The headlining band was taking their bows. The lead guitarist threw out a handful of picks into the crowd. Picks are pretty light, most of them dropped right in front of the stage, but my eyes locked on one pick that sailed at least forty feet through the air and landed right in between my feet.

Plan B

Here (http://tinyurl.com/7xpsenr) is an interesting video on Ted.com about a recently FDA-approved treatment for cancer called Novocure, Tumor Treatment Field. I’ll gladly wear a big head bandage with electronic bits in it in order to live a normal, tumor-free life. Looks like a motorcycle helmet just about completely covers it anyway.