Craniotomy, No. 2
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.
MRI Hell
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).
Bad News
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.
Cycle 4 Update – Roll Tide
(This was going to be a short entry but somehow evolved into a novella.)
The MRI from my March 19, 2012, Cycle 4 appointment at UAB revealed no tumor recurrence. The cavity in my brain looks good.
Tina breathed a big sigh of relief.
I was unfazed. I mean, I was glad to hear the good news, but was not surprised at all. We then drove three hours back to Atlanta.
Upon returning home, I was immediately overcome with fatigue, collapsed into bed and slept heavily for several hours. Now this was a surprise to me because I’ve been getting plenty of sleep, including the night before. I suspect that while I consciously don’t feel any sense of anxiety or fear about the cancer manifesting as a deadly tumor, I might unconsciously carry it as an exhausting burden. Maybe hearing the good news allowed me to release a tension of which I was not aware.
In any case, I feel great now.
Why Do I Have to Take Keppra?
Alternate heading: The UAB staff is fantastic.
It’s bugged me for months. A tumor caused my seizure. The tumor was removed. Why do I need to take anti-seizure medication twice a day? I’ve asked this question to several physicians and always got a vague answer that registered in my mind as, “because we say so; once a seizure, always a risk.”
I posed the question to Richard Taylor, DNP, CRMP at UAB and he simply explained that my brain isn’t the same anymore. Simple as that. Signals travel through the brain and if they happen to be going towards the area of my brain that was compromised, things could go haywire and another seizure could happen. Maybe; maybe not. Why not take drugs that can reduce the risk of this happening? That convinced me.
Why Is My Temodar Dosage 400mg When the Formula Reveals the Range is 280 to 380 mg?
Alternate headings: The UAB staff is fantastic; Knowledge is Power
I again questioned UAB about the dosage of Temodar I am being prescribed. Dosage is generally based on the formula for Body Surface Area (BSA) multiplied by a range from 150 mg to 200 mg:
BSA (m²) = ([Height(in) x Weight(lbs)] / 3131 )½
While it’s easy to just take what the doctors prescribe, I found great comfort in the detailed explanation that DNP Taylor provided me. What the formula doesn’t account for are my closely-monitored blood counts and (lack of) toxic side-effects. Him taking ten or 15 minutes to explain this has made it so I completely understand the rationale and don’t have to wonder about it every night I down a handful of chemo.
What About Next Steps?
Alternate heading: Once Again, UAB Kicks Ass.
We constantly educate ourselves on options and possibilities. Ok, my wife, Tina, does most of that work. We asked UAB doctor Burt Nabors, M.D. specifically about Novocure Tumor Treating Fields therapy as a Plan B in case of recurrence. Our research (the company’s biased website) made it sound like the cure for GBMs. Dr. Nabors gave us his thoughtful, informed and thorough opinion about it. While it is still of interest, there just isn’t enough data for UAB to invest resources into becoming a certified provider. FDA approval just means it’s safe — not necessarily effective.
Whenever we tried to ask other oncologists about “what-if” scenarios, they all want to cross that bridge when we come to it. I know doctors are busy and don’t have time to play out all the possibilities, but all the UAB team members have been extremely accommodating to us.
Although I attended Auburn University and am not a college football fan, I’ve got to exclaim:
Roll Tide!
Alternatives — Emotional Energy
I continue to explore other sources of healing. I went to see an Emotional Energy therapist. Here’s a quick overview. Through muscle testing, the therapist revealed that I have some unresolved resentment from around age 16-17. Well, who doesn’t? That’s a crazy age. But more interestingly, she suspects that I even have some resentment from just before birth. Like maybe I wasn’t quite ready to come into the world but was plucked into existence via forceps or something. Going to have to talk with Mom about that one.
But the real interest here is that some practitioners of Eastern medicine advocate that some chronic illnesses, like a tumor, can be caused, at least in part, by emotional trauma. It sounds a little cooky to us Westerners. I have higher priorities to focus on but may consider going back for a follow-up visit.
I think Ayahuasca sounds more fun and equally worthwhile though. Anyone interested in a trip to Peru?
Contemplation
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.
Under the Protection of Vulcan
Vulcan
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.
Medical Update
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.
Personal Update
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.
Huevos
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!
Old Friends
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.
New Friends
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.
Thanks
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!
Motivation
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.
Why Can’t We All Just Get Along?
Medical Update
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.
Personal Update
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.
Goodbye, Chicago. Hello, Birmingham
Going forward, I may try dividing posts into medical and personal sections. This should make it easier for people who are just interested in the ICT-107 trial.
Medical
I had my final Chicago treatment visit. Blood tests were fine. I got the vaccine injections. They caused the same flu symptoms, which Tylenol helped alleviate. We thanked Liz and Dr. Aiken for their wonderful care and attention. My case is being transferred to the University of Alabama at Birmingham comprehensive cancer center because Chicago is too far away, too expensive and too cold. My first visit to UAB will be for my second MRI.
In front of Chicago Tribune building.
Personal
We flew to Chicago on Christmas Day (Sunday). It’s a great day for travel — most people are at home.
My appointment was on Tuesday so we had all day Monday to explore the city. Unfortunately everyone else had the same idea. We tried to see the Dr. Seuss exhibit at the Science and Industry museum, but it sold out as we waited in line. So we went to the Art Institute of Chicago instead. It was inspiring for me. I hope to get into the studio soon for some painting.
Another big stop of the day was a visit to Pastoral to sample and buy artisanal cheeses. For my foodie friends, I was excited to buy a limited-production cheese I had been wanting to try for years — Upland Cheese Company’s Rush Creek Reserve.
We ended the day with a fantastic meal at our favorite Chicago restaurant, North Pond. I loosened the reigns on my self-imposed dietary restrictions so I could enjoy the seasonal tasting prix fixe menu with wine pairings!
Dinner at North Pond Restaurant
I’ll miss the culture, architecture, food, art and vibrancy of Chicago but I’m ready to move on. I haven’t visited Birmingham in a long time. So I look forward to checking it out again. But mostly look forward to all the friends I can reconnect with who live there or nearby.
Extended Phase, Month 1
My first week of double-dose chemo went well. I did not experience any ill effects.
The follow-up blood results also showed that the chemo did not significantly knock down my blood cell counts.
The only thing that has changed from my regular regimen of nutritious eating and healthy living is that I’ve continued riding a bicycle regularly. It is quickly improving my endurance, stamina and energy level.
Tina and I will spend Christmas day traveling to Chicago. We will spend the next day having a last hurrah in the city. The next day will be my final visit to Rush University Medical Center before we transfer treatments for the next year to Birmingham.
I'm getting good at growing sprouts and wheatgrass.
Beautiful mid-December day. I can't ride my motorcycle yet, but I can share a fire with her.
Ways to Help
Your thoughts, well-wishes, encouragement and positive vibes are a big help. Financial donations to my fight are welcome as well. Please visit my Donate page for an explanation of how and why donations are helpful.
Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 