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 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!
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.
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.
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:
- 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.
- 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.
- 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.
- 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.
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.
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.
There’s no useful information in this post. I do have a meeting with the Emory neurosurgeon this afternoon and will report back. Below is just a curiosity I wanted to share.
When I viewed my latest MRI image, the one shown in my previous post, I saw a human form with two faces in the middle of the image (between the two hemispheres). A horned head and a face in the abdomen.
This morning, by chance, I happened upon an oil on wood painting by Hans Memling called “Hell” done in 1485. I was struck by the similarity of the images.
I understand if you don’t see it (or if you don’t want to see it).
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?
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.
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.
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.
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.
The statue of Vulcan in Birmingham is well-known in Alabama. In ancient Roman theology, the god Vulcan was worshiped to avert the destructive powers of his fire. This power was however also considered useful if directed against enemies. I’d call cancer an enemy, so I’m glad to be under his symbolic watch.
The transfer from Chicago to Birmingham is complete. I’m officially participating in the ICT-107 clinical trial at the Kirklin Center at UAB as of January 23, 2012. This visit concludes Cycle 2 of the Extended Maintenance Phase. I had an MRI. The images showed no tumor growth. Things look pretty good. I will continue with chemo. My weight is down to 160 pounds. Dosage for Cycle 3 is 400mg of Temodar.
In the past I hardly knew anyone affected by cancer.
Now everyone I know is.
I feel very good. I wasn’t surprised by the MRI results, mainly because I intuitively “feel” like it hasn’t come back. I am relieved of course. I feel like I can start doing things now, like planning a get-away for Tina and I; planning visits with friends en route to Birmingham.
Between Atlanta and Birmingham is Gadsden, where I spent my youth. Tina and I stopped there to visit briefly with family and to have some of my sisters famous huevos rancheros (which were fantastic). My sister sent me this email the next day:
Knowing how excited fresh eggs would make you and Tina, I asked my friend to ask her neighbor for three eggs. I know they own chickens and occasionally share when they are well stocked. The neighbor informed my friend that the hen is molting and hasn’t laid any eggs since November. Molting uses protein to produce new feathers which slows or stops egg production. The next day, the neighbor called my friend, shocked that he found three eggs the next morning. He claimed he hadn’t seen that before so he gave them to our family because he felt it was meant to be. I’d never met those people before. Very kind act!
I have several friends in Alabama from back in the day.
Can someone really be called a friend if you haven’t had any contact with them in 20+ years?
I found the answer to be a resounding Yes. The bond you make with someone from kindergarten to twelfth grade can be pretty dang strong.
Quite conveniently, old school days friend, intimidating center forward, amateur herpetologist and dexterous speed skater, Matthew White*, lives right next to UAB and he was willing to put up with Tina and I for the night. Thanks, Matt, for the generosity. It was great catching up. I’m going to push your hospitality to it’s limits over the next year.
* Those are descriptors for the Matt I knew when we were kids.
In fact, there’s so many people I want to catch up with, we might just have to throw a party so I get to see everyone.
I have a new group of friends too. Things we have in common include:
- Frankenstein head scars and titanium implants
- wacky hairdos
- taking dangerous drugs
- and a strong desire to beat the 14 month death statistic
Those friends whose struggles are more difficult than mine inspire me to treasure and appreciate the good things I have going for me. They also keep me motivated to not slack off because of some good MRI results.
I hope I can serve as inspiration to them to not give up hope. Find joy however you can. Revisit positivity between bouts of anger, depression and frustration.
Thank you to everyone who is sending out positive, healing energy on my behalf. That energy comes in many forms: prayers, tonglen, beer-drinking and Hell-raising, Facebook posts, blog comments, silent thoughts and inappropriate jokes. I appreciate them all!
I just popped 400mg of Temodar. That’s up from 300mg last month. I’ll do this for the next five days and hopefully not have any bad effects from the dosage increase.
I had an experience today that I want to write about. It’s probably better suited for a personal diary but I don’t keep one. Probably not even worth writing down, but whatever.
I was riding my bicycle home from an appointment with my oncologist. It was sunny but in the mid 30’s. The appointment went well. I was feeling good — enjoying the day. I was coasting downhill, getting ready to turn left onto an uphill side street. To take advantage of momentum, I made a wide sweeping turn which put me a smidge into the oncoming lane of the side street.
I’ve been riding a motorcycle daily in Atlanta for ten years. This means that I have a lot of experience with the dangers of traffic. Being safe and looking everywhere is second nature for me.
I saw the car approaching on the side street and knew that I had plenty of time and room to make this turn.
But the driver still had to make “get out of my lane you stupid idiot” hand gestures at me.
Now, I’ve recently adopted a new outlook — a new way of thinking. I’m positive and upbeat. I try to be understanding and patient. I think good thoughts and put out good vibes.
But at that moment, I just about lost it. I felt the red heat of rage warm my body. I skidded to a stop, turned to face the guy and gave him my best “what’s your problem?” arm gesture. He saw that in his side view mirror and we had a short stare-down, just waiting for each other to make a move. I hoped he would stick his head out of the window and get into it with me. But, he finally pulled away and I continued home.
As I rode, I thought how I hate people in the city. There’s so many mean people. In fact, everyone that I don’t know, I dislike. I daydreamed about the argument we could have had. I relished the guilt he would have felt when he heard my overly dramatized story of being a terminal cancer patient riding a bike in freezing weather because I’m not allowed to drive myself to the doctor and that I needed that momentum to help me make it up the hill. Alternatively I envisioned punching him in the face for being a jerk.
Then I realized that all that negative thinking was ridiculous… and harmful. This is the kind of thing where you just let it go. I don’t hate strangers. I like living in the city. All those emotions I went through are counter to what I have spent months learning through meditation. So why did I care what that guy thought? Why did I get so mad about it? Maybe that’s human nature. Or maybe I need to keep working at how to focus on the important stuff. Maybe lots of us do.
As I crested the hill I began to ponder his side of the story. What could possibly have made him get upset. I was nowhere near causing a collision. Yes, technically I was in his lane for a second but he couldn’t be so obsessed about the Rules of the Road to get that worked up. Maybe it’s some deep-seated problem the poor guy has. Maybe his wife left him for a biker. Maybe he never learned to ride a bike as a kid. Who knows? The point is that he must have had some reason and I’ll never know. Could be he was just having a bad day. Who cares? Let it go.
It made me realize that we can’t all know everyone’s point of view all the time. Don’t sweat the small stuff. Actually, don’t spend any time worrying. Just focus on the things that will make me feel good. So I went back to enjoying the moment at hand, noticing the bright afternoon sun beams dancing with the chilly breeze on my cheeks.
No updates here. Only a daydream.
“Doctors know the best answers for problems. And they’ve studied your disease for decades — centuries even. It’s best to do what the doctors
dictate recommend. Quit rebelling.”
These are probably the thoughts I would contrive if I tried to imagine reassuring Mila that the Albuterol is necessary for her well-being, as I forcibly “apply the mask to her muzzle and ensure an effective seal.”
Mila is our cat. Eight to 12 breaths, twice a day — every day. Mila does not like her treatment.
She runs away and tries to hide. Once captured, she tries to evade the mask, but she’s no match for my strength (and wisdom). Yet she still resists. She holds her breath, but eventually has to concede. She tries to fake me out by acting compliant, then suddenly yanks her head back in an attempt to escape. Resistance is useless.
We have noticed that her asthma does seem to be quelled since using the feline inhaler. I think she knows we are trying to help her. She often purrs afterwards.
But she always tries to resist. Over the years, we’ve broken her spirit a bit. (I mean, we’ve convinced her we know what’s best.) Since she knows it’s inevitable, she resists a little less.
I can imagine Mila asking me,
“Well why are you questioning taking chemo? Doctor’s say it’s time to double the dosage, so do it. I mean, who are you? You read a few books and watched some videos. You think that qualifies you to question the Standard of Care approved by the FDA? You do want to live an extra six months, don’t you?”
Like Mila, my instinct is to resist or at least seriously question this “answer” of what is best. Maybe Mila, like me, is not convinced that the prescribed treatment is the best.
“Is this helping more than hurting? Is it really helping at all? Why am I having to deal with this?”
These are the questions we might ponder tonight as we share a bowl of (sugar-free) ice cream.
Despite living under the same roof as Mila and I, Pickles hasn’t seemed to learn a thing. She continues to live recklessly. She stays out late; eats red meat (mice); strolls across the street; scratches furniture; drinks too much (milk). Maybe it’s genetics, or luck, or nutrition, or karma, or activity level, or God’s plan, or state-of-mind.
Click here to jump down to the medical update (if you prefer to get down to business and skip the personal thoughts in red). It’s good news. But as I sit here suffering from the usual post-vaccination chills and fever while self-medicating on miso soup and green tea, I am compelled to share a personal thought.
I am glad that I am the one who was stricken with this cancer, rather than my wife, Tina.
The reason? I confess that it’s more than the altruistic and romantic sentiments expected between spouses. It’s equally rooted in selfishness. Selfish, because I want to spend a long, healthy life with Tina. And Tina is the one in this relationship with the tenacity, passion, gumption, endurance and fight that it takes to navigate the hurdles that one encounters in these life struggles.
Sure, I would do everything in my power to support Tina if the tables were turned, but truth be told, she is the more powerful one. Her propensity for compassion and talent for getting things done are innate.
Doctors, healers, family, friends, neighbors and peers are of invaluable importance to my healing. But I credit her with saving me.
This morning I had an MRI — the first one since my craniotomy. Dr. Aiken reviewed the images and declared them “unremarkable.” Not the most vibrant nomenclature, but nonetheless, the news we hoped to hear.
To clarify, there is no detectable tumor growth. While this news is celebration-worthy, it’s a small victory. Doctors didn’t really expect to see any growth yet anyway. We have a long, ongoing regimen of medication, monitoring, treatments, research, discipline, planning and doctors’ visits ahead of us.
Tomorrow we take the MRI images to Emory to be reviewed by my oncologist and radiologist for second and third opinions. Keep you posted if anything interesting comes of it.
A couple people expressed an interest in hearing more about working with the acupuncturist, Lisa. This post describes a bit of my experience with her. (Forgive the cheesy graphic, but I needed something for this post. The colors correspond to body chakras that I discuss below.)
Lisa always “consults” my body to determine what needs to be done. I hold a finger and thumb together. She does something which seems to be like asking my body a question or she’ll touch a part of my body. She then attempts to pull my fingers apart. Regardless of the effort I exert to keep them together, they sometimes release. Other times they hold fast. Something that is really strange, and I may have mentioned in an earlier post, is that she can swipe her hand in one direction on the part of my body she is addressing and my fingers release. Then swipe in the other and they hold fast. It’s as if she asks a question and gets an answer, then asks the contra positive to verify the answer. Just this bit is intriguing to me.
At my last appointment with Lisa, we decided to do some energy work. With my eyes closed, I focused on my breathing. I tried to be observant of what I was feeling and experiencing. Lisa did her thing — touching here and there and whatever else (I wasn’t watching). I’m sure I’m not describing the goal accurately, but essentially it was for her to “look” inside me and help de-knot my chakras and contribute to my healing.
Maybe you know what it’s like when your eyes are closed and you sometime see shapes or colors. I was experiencing a lot of the color purple. I sort of skeptically, but open-mindedly watched shapes in my mind’s eye morph as if they were relevant. There was no verbal communication between the two of us. Maybe 30 minutes into it, she placed fingers on my forehead and abdomen. At that moment I experienced a flood of orange and white light in my mind and she said, “that’s better.” That coincidence seemed weird (in a good way).
After that, I sort of lost track of time. I don’t remember consciously having to focus on what was happening or my breathing. I suppose I was in a bit of a dreamlike state or maybe even asleep. Lisa suggested that I was possibly “out-of-body.” I do remember “waking up” abruptly, like I somehow knew we were finished without being told.
Afterwards, I described the orange light to her. She explained that at that same moment, when she said, “that’s better,” it was because she could sense the adjustment (to my energy flow).
These are things that I think most people have to experience to believe. I’m not even sure I can believe my own experiences. That is, maybe my interpretations or memories are distorted by what I think should be happening or what I want to happen. But, it feels right. It feels good. I think continuing to explore these things will help me understand better.
I do know that it’s not hurting anything.
I’d love to hear your opinions and feedback on any of this. Comment below if you want it public. Or privately email me at firstname.lastname@example.org.
Oncology called today. My blood platelets are back to normal. I’m all clear to continue taking my chemo pills. This is the good news we were hoping for today.
Being eager to get back on track, I took my dose without giving a thought to the anti-nausea medicine. One of the doctors (a resident) had suggested that if I wanted I could try to take the chemo without the anti-nausea, because there is a chance that I might not need it. Well, I needed it. For an hour I tried all the tricks I could to fight it off. I finally just had to give in.
In a waiting room one day, another tumor patient explained chemo nausea like this: imagine the sickest you’ve ever been… multiplied by ten. It was pretty rough. But not as bad as throwing up from having drank too much booze in college. That is, I felt fine afterwards, and the room wasn’t spinning. So, lesson learned.
Tina loves squirrels. I like squirrels. But like most Atlantans that I know who feed birds, squirrels are regarded as a nuisance. I happened to take a look outside this afternoon and see the squirrel in the photo above. (Note, some mobile devices aren’t displaying the photos.) Looks like the poor guy has a big tumor on his shoulder. I don’t know what it meant, but it struck me as something I needed to take note of.