Glioblastoma and me
Turns out a new understanding of an issue I'd not expected in medical for me. I have an issue in my brain. "Left temporal lobe." 4 times 4 cm at one side, it says. Yikes. I figured out when I had to get to the hospital when I got to the hospital. Issue I noticed in ability to see in one eye. Real, it turned out. Don't know full can get decided what treatment and issues may take for a day or two. I'll be in hospital, for some days, looked out. Looks like Marni will be in besting quality of issued. Some lovely relaxing medication interns a bit of challenge for me to understand details. This may interest less that clear is than I think and not make exactly what I'm trying to say. Sigh. Medication feels lovely. Did I mention?
Facebook post, Dec. 10, 2016
In December, I discovered I had a tumor the size of a chicken egg squashing the lower left side of my brain. I had a relatively successful surgery a couple of days after that semi-coherent Facebook post.
The surgeon cut out a big chunk of skull over my ear, pulled out about 95 percent of the tumor and put the skull back together. I woke up with the makings of an interesting scar but thinking much more clearly than I had pre-surgery.
I knew I had to learn about this cancer to help me decide how the treatments needed to go.
The self-education approach had been important for me during several other illnesses. And I was able to learn quickly about this one, using most of the same strategies I’ve developed over my 36 years as a reporter.
Turns out that what I now have is an important illness that’s getting fascinating attention from medical researchers. Some new and more successful treatments may be a year or two from kicking in. What I’ve learned — and the specific strategies I used to learn it — could be useful to people dealing with lots of other serious illnesses.
So I’m writing about it. And I’m hurrying a bit for reasons beyond the standard rush of journalism deadlines.
Most people with my illness — glioblastoma — live less than a year and a half. That means my life has changed. So have the lives of my wife, my family and some of my friends. How can I help them do well when I’m gone?
This writing and what I'm doing with my family are all accomplishments I've suddenly decided to aim for. How much planning for a future without me can I help my wife, Marni, with? What can I learn and write about that may help readers? If I'm headed out in a hurry, I've decided I want to go with some well-appreciated flashes before the end.
I want to go out like fireworks.
At this point, though, I’m still largely focused on finding the best ways to increase the odds that I’ll last past that median survival date.
I'm just about done with my initial treatment: For six weeks, it's a weekday zappage of radiation and a daily chemotherapy pill. I’m all right so far. Each zappage takes less than 10 minutes once I get to the machine. The pill, a generic form of Temodar, is one I take at home. Side effects have been relatively mild: Fatigue is up, but there's been no nausea. Nor has there been much loss of my mental skills.
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I’m still learning about what my additional treatment choices could be by the time the cancer is likely to return. I’m also learning about the way medical science has been developing potentially new ways to go after glioblastoma, which isn’t super rare but also isn’t as common as other cancers.
Here’s how I got tied to this mess:
Last fall, I was a 61-year-old reporter with 35 years of journalism experience who had worked for The Dallas Morning News since 1988. I had been covering the energy sector since February — my first beat as a business writer. I went to the gym less than I should have. I rode my bike on nice days.
And I felt like I was losing a bit of stamina, a bit of speed. Mostly, I thought that was about geezerdom. But a cardiac exam came back 100 percent OK.
Then I started to forget some common words. Mardi Gras. Generic. Plantain. Marshmallow. My comprehension of reading or hearing words was unchanged, however. And it turns out that Google is the intellectual equivalent of a modern prosthetic limb. Like some of those high-tech artificial feet help people walk or run almost as well as a non-amputee, entering related terms into Google (“Louisiana,” “festival”) spits out lots of specific words ("Mardi Gras”).
But my word problem got worse. It reached several words daily, which became a particular problem for a professional writer. Eventually, not even Google could help me find words fast enough to hit my deadlines. So I went to my doctor, who did a blood test. I wrote about it on Facebook on Dec. 9:
I have a physical issue that's going to take me off service for a little while. It's a mental problem that may well be connected to a lack of thyroid hormone production. You may have noticed over the past month or two that I'd been finding some problems remembering some words in conversation. I'd also been finding concentration more difficult during parts of a day. Reporting and writing my posts had gotten harder. I'd thought it was related to stress or being tired. I took two weeks off last month, figuring that would take care of the problem.
The week I got back, the week after Thanksgiving, I realized I was not better. Which made me set an appointment with my doctor. Who told me this week that it looks like my thyroid hormones are running short. Which can be a creation of some of the problems I told him about.
So I'm on medication right now. It's likely to take at least weeks for medication to lead to a recovery for a thyroid hormone issue. Which may also require other drugs to be added ...
The very next day, I felt crummy, took a shower and realized I had a new, small blind spot in the upper right section of my right eye. I texted my wife. She called my doc and demanded I get ready for a trip to the ER. She thought I might be having a stroke.
A couple of hours later, after CT and MRI tests, a doctor in the ER at Baylor University Medical Center at Dallas came out with the explanation. He showed me the results of a scan that flashed the egg-size growth. And he must have thought I was nuts because my reaction was something like a basketball fan watching a replay of a reverse dunk.
"That's amazing!" I said. And I laughed.
I’ve done some writing about science and medicine over my career. The idea that a tumor that big would have relatively few symptoms — no pain, dizziness, weakness on one side, numbness — was astonishing to me.
And it was all in one lump, not tangled across the whole brain like ivy. The one lump wasn’t what I’d thought brain cancer is mostly like. So maybe it was surgically removable?
That it might be an inevitably fatal illness? My mind didn’t go there as fast.
Surgery was two days later.
What is glioblastoma?
It's Jeff's brother Dale: Jeff is out of surgery and in recovery. The procedure lasted about 90 minutes and went as expected. The tumor was removed and they will run pathology tests to determine type and course of treatment. In the meantime, he will likely remain in the hospital for at least 5-7 days.
Facebook post, Dec. 12, 2016
Not long after I woke up, lying in a hospital bed in an ICU room with a couple of IVs plugged into me, my surgeon came to tell me what he knew in a matter-of-fact manner: He’d sliced off a chunk of skull above my left ear, pulled out 95 percent of the tumor and put the skull piece back on. But the rest of the tumor was tangled in my working brain cells. He said it was glioblastoma, which I knew nothing about. And he said that the median survival is 12 to 16 months — even with the best basic treatments.
He gave me his take on those standard follow-up treatments and noted that some good alternatives may be taking shape. But that wasn’t his center of expertise.
This was shocking but not as depressing to me as one might think. It was fascinating, even. Frankly, it's my third cancer, my fourth serious and potentially fatal illness. An intellectual approach to those illnesses had helped me through a lot of years.
As soon as I was conscious and alert after the surgery, I realized my brain was already working better than it had a few days earlier. I remembered more words (not 100 percent, then or now, however), and my comprehension was fine. I pulled out my iPhone and started searching for glioblastoma info. Once again, Google was my friend. I searched out some basic explanations. And I started posting about my case on Facebook. My writing post-surgery was a lot clearer than it had been only a few days before, despite a typo or two.
So here's what I know. Feel free to pass this along to whoever you think is appropriate (and if this actually makes sense):
Brain cancer, as expected. About 95% from giant freakin' egg-size tumor was removed.
Surgeon says: Until fairly recently, survival from this was likely max of 12-16 months. Basically one chemo and radiation possible.
But my surgeon, who isn't exactly full advance expert on all newest treatments beyond best cutting, says there is some relatively new option. Potential survival higher 2 or 5 years or something? Dunno.
I have some time before treatment needs to start, he says. About 3-4 weeks. Tumor not growing instantly.
So I will be checking with Texas brain cancer experts. At Baylor [Baylor University Medical Center] and UTSW [UT Southwestern Medical Center] for sure. Likely MD Anderson [MD Anderson Cancer Center], too. I want to find out what most current theory is for treating what I have ...
I will go home tomorrow or maybe Friday depending on my physical comfort. Ain't bad now, amazingly. But I won't rush if one more day more would be a bit better for how I feel.
Once home, I would be ok for some visitors, I think. Marni will know best what I'm up for.
Naturally: Looks very unlikely I'll be able to go back to full time work unless new treatment is amazingly miraculous. Some writing possible if I come up with a column idea once in a while? Damifino.
That's all I got.
Privacy ain't me ... 1:-{)>
Facebook post, Dec. 14, 2016
Between searches and Facebook friend responses, I started to learn quickly. And I realized I had to come up with the best plan for which doctor would direct my treatment immediately and down the road. And I had to learn what the potential treatment choices would be.
(And I'll admit that while my research had a selfish prime purpose, even at the start I hoped I'd learn enough and be able to write something that would be useful. Holding that ambition helped my mood.)
Here are some of the glioblastoma basics. Much of this can be found online with an excellent explanation at the American Brain Tumor Association website. (It's an organization I didn't know existed before I suddenly needed it.)
Glioblastomas are tumors formed by cells called astrocytes. These are star-shaped cells that can be found in supportive tissue pretty much all over the brain. What's often also referred to as GBM is one of the most common brain cancers, but there are a lot of varieties. GBM represents about 15.4 percent of brain cancers.
Worldwide stats are hard to find, but it's possible there are a few hundred thousand new cases a year. In the U.S., some reports indicate it's been a bit fewer than 20,000. Ted Kennedy may have been the most famous American victim. Reports say that former Vice President Joe Biden's son, Beau, had it. And Canadian music fans know that Gord Downie of The Tragically Hip was diagnosed with it last year.
It’s a bad illness. The malignant cells reproduce quickly. Without treatment, it’s fatal in about three months. With successful surgery, radiation and chemotherapy treatment, the most precise median survival is 14.6 months. That means half the people with the illness die sooner and half live longer. But longer life is pretty limited. Depending on your data, fewer than 10 percent live three years or longer, and some genetic specifics push the survival down.
Nobody knows what causes it. Malignant glio cells neither show up from elsewhere in the body nor travel to other organs. Nobody really can explain the relatively few cases of long survival. And a lot of the recent survival rate data shows little change from several decades back.
But there are also many new treatments being experimented with. A few have moved beyond experiment. Not that there’s a great case yet for any of them.
While hammering out my research, I contacted Dr. Mark Gilbert, the senior investigator and chief of the neuro-oncology branch of the National Institutes of Health and asked him about the potential treatments. Which ones should I try? Which have scientific support?
“If there was a treatment that was superior to all the other treatments, it would be standard of care,” he said. (The GBM "standard" is the precise radiation/chemo approach I’m on now and is found at most hospitals.) “Everything else you are talking about has not been proven.”
But some of the experimental treatments have come far enough along that they may well be worth trying, he told me.
After all, the alternative is inevitable. This way to the egress. Can I go out with a flash?
Lessons I have learned
A thank you!! You folks have told me lots and lots and lots of funny stuff, prayers, some amazing information I knew zero about! I figure to remain at hospital one day more. Getting adjusted to my quick treatment plus my diabetes needs a smidge more clearness quickly. Possible for one more day? Maybe not. I've got expert docs I'm already starting to plan for real specialty conversations pretty soon.
Facebook post, Dec. 15, 2016
A generation or more ago, most patients treated their doctors as deities. Whatever the doc said, that’s what the patient did. That did not guarantee the patient would get the best or most sophisticated treatment. And these days, the treatment choices for many illnesses have grown like new large gardens.
So what should patients do? How can we work to improve the chance that we make the best choices? My good news and bad news was that I’d gone through the process before and I had a pretty good idea of what I wanted my plan to be for choosing my glioblastoma treatment. A dozen years ago, I’d developed follicular lymphoma and searched out what I thought was the best solution.
I’d used my reporter’s methods back then to figure out what the illness meant, what my choices were and who I wanted to handle the treatments. So I turned back to that same strategy now.
Here’s how I decided whom I wanted in charge of my treatment. And how to track the potential treatment choices. It’s a method useful not only to other glioblastoma patients but to people who run into other bad illnesses.
But I’ll admit my tips won’t work for everyone. I’ve had just enough good luck with my bad luck. People who have an emergency don’t have time to dither, for instance. And I have decent company health insurance and some money in the bank, both of which expand my horizons and extend what I can consider.
I’ll also offer these tips as if the patient has the power and ability to take charge. But it’s a process that can be followed by others to help someone they love.
Web research
First: Do some web research quickly after your diagnosis.
Get whatever data already exists on your own case and plug that into your searches. In my case, my tumor got some analysis right after surgery: IDH-wildtype (WHO Grade IV), for instance. And a few genetic specifics that I didn’t understand but could search for.
Be very careful about the sites you look at. There's a lot of crap on the web. Lots of fake medical hoo-hoo. Make sure you get your basic understanding from sites with excellent credibility. I checked up on the American Brain Tumor Association, for instance, before I took its explanation of my illness seriously.
Reach out
Second: I used the results of my searches — including several recent major medical journal reports on glioblastoma treatments — to come up with people I wanted to email.
My subject line was explicit about what I wanted. My email included my current information. I asked specific and technical questions that proved I’d done my homework. Most people I emailed answered within days, including Dr. Mark Gilbert, the senior investigator and chief of the neuro-oncology branch of the National Institutes of Health, whom I’ve mentioned. Great information.
I wanted to increase the chance I’d make contact by making my case more interesting than just the basic data and by revealing interesting things about myself. For instance, I used this as the subject line for many of my emails: “I'm a reporter with a deadline question (and I'm kinda maybe dying of glioblastoma).”
If I hadn’t been a reporter, I would have found some other creative way to write the subject line. Did my approach — or identifying myself as a reporter — increase the odds of getting a reply? I don't know. But it made me more confident. And confidence is good for my mood.
Advocate
Third: If at all possible, have an adult advocate involved in what you are doing. Husband, wife, friend, whatever. No matter how with it you think you are, you aren't. You may be ill; for certain you're distracted.
That advocate will be able to focus better than you and may remember much better than you. I was lucky: My wife, Marni, is an RN. She’d never followed glioblastoma but during the first couple of days that I recovered from surgery in the hospital, she got smart and specific about my needs.
(I’d also record the conversations with the docs if they agree to it. Some won’t. For me, that would be a negative. Both you and your advocate would be helped by listening to the recording later. There will almost surely be points you don’t remember as clearly as you think.)
Choice of treatments
Fourth: As quickly as you can, come up with a set of choices for where you want to consider treatment. Some illnesses have very limited choices, some have more. You want to find the best place for you, and some are better than others.
In my case, I made contact with three Texas hospitals with excellent reputations for treating glioblastoma: Baylor University Medical Center at Dallas, where I had my surgery; UT Southwestern Medical Center in Dallas, which has high-grade cancer treatment; and MD Anderson Cancer Center in Houston, which is crazy-good and aggressive with lots of cancers.
I visited the two Dallas hospitals and had incredibly good conversations and emails with people at the Houston facility. Here are a few highlights:
MD Anderson has a program called, no kidding, "Glioblastoma Moon Shot Leaders," led by Dr. John de Groot. Among the most important things he pointed out was the need for the basic daily radiation/chemo for six weeks. I heard that from every doctor I talked to, and it helped me focus. It also made my choosing MD Anderson problematic, because I didn't want to move to Houston for six weeks if I could find a good choice in Dallas.
Dr. de Groot also told me about the importance of finding a doctor with particular experience with glioblastoma to handle the radiation program. The survival median, he said, is noticeably lower for a community treatment center using a doc who is busy setting up radiation for various parts of the body. MD Anderson has several glioblastoma radiation top guns. And the median survival for MD Anderson patients is about two years. Why?
“It is hard for us to know exactly what’s going on,” Dr. de Groot said.
UT Southwestern has Dr. Edward Pan, associate professor of neurology and neurotherapeutics, who handles a lot of glioblastoma cases. My visit to him and his team was educational and impressive.
Like Dr. de Groot, Dr. Pan told me that nobody knows what causes this cancer. He discussed the same general median survival data that I got elsewhere. And he pointed out that the median isn’t necessarily a tiny bull’s eye.
“I’ve seen somebody 13 years out. Why them? Nobody knows," Dr. Pan said.
He discussed the specifics of the standard of care treatment: radiation and the pill called Temodar for six weeks. Then a pause for 28 days, five days of Temodar, another pause for 28 days. The pauses and pills go on for a year. (If you live that long, he did not say.)
Dr. Pan was specific about the likely side effects I’d need to live with. Nausea and fatigue could crop up early. But in the long run, the radiation would almost surely damage some of my healthy brain while it killed as much cancer as possible.
Because of the part of my brain that the radiation must target, I’ll probably lose some words, he said. Something like what the tumor did before surgery? Maybe. But maybe different.
“The typical speech problem we would expect — in the position where your tumor is — would be where you are speaking but the words don’t make sense to other people,” Dr. Pan said. “And where people talk to you but you don’t quite understand what they are saying.”
People who have known me awhile will notice the change, he said.
Yikes.
But for me, a reality-based assessment helps plan for my treatments and how I want to live.
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Baylor has Dr. Karen Fink, founder of Neuro-Oncology Associates, board-certified by the American Board of Psychiatry and Neurology, and a member of a national clinical trial network, the Brain Tumor Trials Collaborative.
She has a national rep and was mentioned to me by patients — several of my Facebook friends knew or knew of her — as well as doctors from a bunch of places. Like the other doctors I talked to, she pointed out what's not known about patients who live the longest.
“There are some people I’m taking care of that are five or even 10 years out," Dr. Fink said. "And you look back at their tumor and you’re like, ‘What was different about this?’ And sometimes it’s hard to tell — the tumor is truly a glioblastoma.”
Aggressive treatment may help, though, she said.
The basic treatments everyone else mentioned are also set up at Baylor: radiation and chemo. And yes, Dr. Fink agrees that radiation is likely to cut down some of my mental skills.
As for my case? There's some information that indicates I may stay alive a bit longer: the amount of tumor that got removed and my high "Karnofsky performance score," a measure of daily-life functional abilities that depend on mental skills. In my case, both are a bit of good news.
But some of my case's reality may push me to the exit quicker: Patients over 60 diagnosed with glioblastoma tend to die faster. And a couple of technical results in the post-surgery analysis of my tumor cells also indicate a higher risk of a shorter life. "Wildtype" cells, for instance, are less vulnerable to some treatments.
But there are a lot more genetic factors that can be measured and that might be relevant, Dr. Fink said. She said she would do genetic screening.
“Genetic screening doesn’t help us now when we’re trying to pick what kind of treatment you need. But it can help, maybe in the future, when we come up with new drugs, maybe,” she said. “We want to know everything we can about your tumor now, in case more tailored treatment becomes available in the future.”
Dr. Fink discussed other alternative treatments that I could consider pretty quickly. One of them sounded interesting. (Google "glioblastoma" and "electric helmet," and you'll see what it looks like.)
I chose Dr. Fink as my main doc for treatment decisions.
Keep checking for info
Fifth: Don't stop looking for information online after you choose your doctor.
I have Google send me a daily alert with links for “glioblastoma.” Some of those links have led to questions I’ve sent Dr. Fink. One of our exchanges quickly led to an additional medication for which there’s evidence it may keep glioblastoma patients’ minds at a higher level longer. Namenda is generally taken by Alzheimer’s patients. I’ve been on a generic form since a few days after I started therapy.
I've also found out about an extract from tumeric, curcumin, that I'll start on after the radiation is over. Dr. Fink's staff is a fan of that one. As well as, I was told, one based on reishi mushrooms.
Don’t become passive
Sixth: Even after you've chosen your doctor, do not go passive. If you come up with new questions, ask them. And if you don't get answers at a reasonable pace, push.
Yes, your doc is busy. And yes, you should be polite. But the truth is that you want your case to be a high priority. If you feel you need to raise objections to how you are being treated or about issues you believe need clarification, do not hold back.
Sometimes, your medical staff is too busy to keep you as informed as you'd want. My radiation treatment shifted for the last week, and no one let me know it would happen. I let the radiation folks know I was not happy about not being warned.
Here’s my best meta-thought about how to go after treatment for a serious illness: Good and fast research will lead to effective questions. Getting answers from doctors will help you understand what’s happening and may nudge the doctors toward their most effective work.
And while it’s a good idea to be respectful in your approach to your docs, have a plan B ready to find a second opinion or put a different doctor in charge.
How my life has changed
Good morning world! For today: What I now know about my medical reality. I've managed to do some significant research and I now know what I know and some of what I don't. So:
My birthday is in three weeks, I will turn 62. The chance of me turning 63 in 2018 is pretty good. The chance of me turning 64 in 2019 is not very good. That's the odds based on the largest data sets about glioblastoma.
My personal odds depend some on the very specific case I have. Some of the data indicates I've got a pretty average case. Median survival of 12-16 months. But some of the data about my personal cancer that is potentially most significant I don't yet know.
Good luck with my bad luck: Some fatal cancers are terrible suffering. Lots of pain that starts quick, no matter how long the survival. That is mostly not the case for glioblastoma. If I live a year, I will likely be in pretty good shape for 10 or 11 months. Two years? A good 22 months. And so on....
From Facebook post, Dec. 27, 2016
Even before I got home from the hospital, I started to think about ways that my life could change for the better.
I was weirdly happy. Some of that was due to the post-surgery medication. But even as that faded, I stayed more positive than one might expect.
More positive than my wife, Marni, for sure. And justifiably so. After all, all I need is to figure out what I want to do between now and my exit. She’s got helping me to worry about — and a lot more. What will she do when I’m gone? Ditto for my mom and my brother, his wife and two kids. And my friends whom I’ve kibitzed with.
My good mood was partly due to my realization that myriad mostly small decisions I’d been bothered by but put off needed to get done soon. And that I’d be able to do it. And that other stuff I didn’t want to do was off my list.
Consider my home office. I’ve been married more than 26 years and we moved into our house not long after that. My office was filled with books and old tech and a cramped desk and other items that I just never wanted to decide what to do with. My wife had been poking me about it for years.
I had plenty of time, I’d figured. And I had so many bigger things to worry about. My job. My income. My obligations to do things with family. My selfish interest in doing things peculiar to me.
Here was a stress: My dad lived a pretty hale 92 years. My mom is currently 92 and active. So I needed to be worried about how to plan finances and activities for another 30-plus years. How long would I need to keep working? What should I wait to do until down the road?
Most of those questions vanished with the surgery. The likelihood of me living more than a year or so is small.
That kills a lot of those worries.
The finance question is helped by good luck on my bad luck. We have no kids, so that cuts down on my sense of responsibilities for another generation. We’ve got pretty good job-related health insurance for a while (although the likely GOP slaughter of the Affordable Care Act could create problems if I live long enough). Marni and I have been fiscally responsible, so we’ve got some resources that should handle my likely survival time.
I realize that people younger and/or poorer have harder problems with this level of illness. But for me, some of my money worries evaporated. If I want to eat fancier for a year or so, it won’t cut what I leave to my wife by much.
Here are things I will change now. I think I will never drive a car again. My mental power at this moment is good enough. But Marni points out that I can't really predict when I might have a moment when the ability goes down too much, Any accident would mean a huge lawsuit possible.
So no more driving. Uber? Yeah. DART trains? Yeah. We shall see. Ditto for 2-wheel bikes. No more. No fall. I am going to get a crazy-fancy trike. NOTHING like a kid's bike. Expensive in ways I won't even give the number for. Comfortable. And with enough storage on I for me to ride to the local grocery store or elsewhere if the weather is nice and I feel good -- and pick stuff up."
Facebook post, Dec. 27, 2016
No more driving is among the most specific life changes I put in immediately. Any driver in a spread-out place like North Texas knows how big a deal it is. But here’s a truth about me and driving: I never really loved it. I got my first driver’s license about a year after I qualified as a teen because I had lots of high school friends who got theirs instantly and drove me where I wanted to go.
We’re keeping my car through the six-week treatment, just in case Marni has a need for a second car to get me to Baylor. I’m getting others to schlep me, too. And the DART train is a lovely choice for some travel.
I also got the fancy trike I'd mentioned in that Facebook post. I’ve already ridden it a bit on warm days. (And thank you, global warming, for pretty much killing a cold Dallas February.) I’m hoping to ride it enough long enough to justify the purchase.
And my office? With the impressive physical help of my brother, I donated about 90 percent of the books to Goodwill. Ditto some of the old wires and tech. Maybe it will be useful. Got rid of the old cramped wooden desk and slightly broken desk chair and got a new and bigger glass desk and a really comfy chair (where I’ve sat to write this).
Marni is happier with the elimination of some clutter. So am I.
Here’s that other truth about change: I’m not doing things I don’t want to or need to.
Work assignments that I knew were necessary to keep my job? Poof. Reading and watching huge sections of news and information because they might have been useful at some point? Nah. Gotta keep lists for obligations more than a few months off? Nope!
And I’ve put doing things for my wife higher on my priority list. It’s another good-luck-on-my-bad-luck angle. Upon further review, as they say in the NFL, I realized I’d probably not treated her as well as I should have some of the time. So I’m trying now. I’m even trying to help her plan what she’d do after I hit the egress.
That has included a suddenly accelerated degree of financial planning. Yeah, I’m old enough that I probably should have done some of that anyway. But retirement still felt distant. Not anymore. And lining up plans that will help Marni the most are at the very top of the agenda. (Getting away from the stock market in the current economic chaos felt like a way to keep resources stable, for instance.)
Marni and I will take a trip after the first block of treatment. About 6 weeks of radiation and so on locks me here. But after that, I will be able to go where I want for a while. I am thinking about a cruise. We shall see.
Journalism. I want to do some... We shall see. We shall see.
That's all for today. I feel very good.
Facebook post, Dec. 27, 2016
There has been one odd change: I’m pretty close to my physical peak around 7:30 a.m. I’ve hated mornings all of my life. If I’d been able to get my brain in gear early and pass an 8 a.m. freshman physics class in college, I may well have done something else for a living.
For all I know, my early alertness is evidence of brain damage.
Is it all better than it was? Not hardly.
I wish it wasn’t so likely I’ll die so soon. I wish I didn’t need to get treatment that will almost certainly reduce some of my abilities. I wish I had more choices that I’d know would be to my benefit.
I've only cried once, so far. Marni and I were talking about what she might be able to do when I'm gone. It included some complex stuff that will be a challenge. For 27 years, I've backstopped many of her needs. I won't be able to help when she moves on. I could not stop my tears as we discussed it. I'll keep trying to get as much set up for her as possible as she keeps helping me in both straightforward and creative ways.
A decade or so ago, I went to some health science event and got a button with a slogan on it that I’ve liked. When I got home from the hospital, Marni bought a plain hat and inscribed it with the slogan:
"Cancer Sucks."
I wear it on many days.
Marni is gone to do some work. I am in a quiet house, alone but for the dogs, for a while. I'm tossing away or boxing for giveaway stuff and stuff. It's pleasant. I work until I'm tired. Then a break. I've had lots of crap I just didn't want to bother with. If I somehow live until 163 instead of the likely 63 I will be happy about shifting. Productive and peaceful.
Facebook post, Dec. 30, 2016.
Where I’m headed
So I'm not about to claim this is totally important. But the first two days of chemo are joined by anti-nausea pills Just In Case. If no nausea, try skipping that pill. Last night I woke up hungry. I'll be passing on that pill tonight.
Facebook post, Jan. 19, 2017.
Radiation treatment has to hold off from starting until about a month after the surgery to let the wound heal enough. Otherwise the radiation could affect the wound too much. I’m a Type 1 diabetic, which means I probably heal a little bit slower than some folks. So I started my treatments on Jan. 17.
I’m getting radiation every weekday for six weeks and taking the chemo pill every day for those six weeks, weekends included.
The two-step attack is backed by many years of data indicating the advantage of the combination: Median survival goes from a few months to over a year. The chemo is a relatively low dose for this six weeks, to weaken the cancer cells and make them more vulnerable to the radiation.
But there is a list of side effects experienced by glioblastoma patients. Which ones will I go through?
Fatigue is at the top. That’s a standard reaction to radiation treatments. I was told that by the end of the third week, I’d probably need an afternoon nap. Turns out I’ve needed that since I had the surgery, so who knows whether that will get better or worse? It did get worse after the third week. But not so much that it eliminated all my ambition or activity.
Nausea is a common reaction to lots of kinds of chemo. For some drugs, that’s all but certain. Some of the IV treatments have been a serious kick in the digestive system, for instance. I’m only taking a pill every night, though. And so far, so good. Not a moment of it.
I was told I'd lose some hair on the left side from the radiation. It happened. I could not care less about that. And there may be some skin damage to part of my ear. I’m using a cream that is supposed to prevent some of that.
The other likely effect of radiating the brain is killing some healthy brain cells. It’s the price that must be paid to kill more cancer cells. Depending on where the damage happens, there are many kinds of reductions in the patient’s mental abilities.
The 5 percent of tumor that was tangled and left inside my brain is in the left temporal lobe, the lower left corner of my cerebrum. That’s the section that hooks up words, processes some vision, handles some memory connections and helps shape personality. Some of that, I’ve been told, is going to be lost.
During the fifth week of treatment, I realized I was losing a bit of short term memory. If I have four things I want to do, I'll sometimes forget the second or third. So I'm writing more lists.
Here’s how radiation treatment operates: My radiation oncologist took a close look at a new and detailed MRI scan to see where the most intense zappage needed to hit and developed a plan.
The radiation machine hit me with seven zaps, each from a slightly different direction for the first five weeks. One goal is to reduce the effect on healthy brain cells while focusing on where the cancer cells are most likely. Each zap took a little less or a little more than about 10 seconds. By the sixth week, the treatment intensified a bit.
Because of where the radiation hits — only my head — I need not get out of my clothes and into a hospital gown. That’s standard for lots of other radiation treatments and slows the patient down a bit with undressing and changing back. So this whole process takes less than 10 minutes once I get called to the machine.
And from what my research and hearing from other similar patients have told me, the basics that I’m going through are very much the standard treatment that glioblastoma patients get at any good hospital.
After the six weeks, what’s next? A month of nothing and then return to a week of chemo that’s repeated every 28 days.
That chemo dose is going to be stronger than it was the first six weeks. So it’s possible I’ll have different side effects. Radiation isn’t going to come back soon. But if I live long enough, I may get some target-specific zappage.
By the time the six weeks is over, an incredibly detailed genetic analysis of my tumor will be done and analyzed by Dr. Fink. I may trot out some of the results to national experts, too. Maybe they’ll have suggestions.
There could be some treatments I need to plan for at that point. I’ll be getting MRI scans every two months. The average noticeable recurrence of the tumor is about six months.
My biggest short-term plan isn’t about medicine, however. A few days after the last zap, if I’m not unexpectedly damaged, Marni and I plan to get on an airplane headed for my hometown of Miami.
Once there, we will get on a cruise ship for a week of the most absolute leisure and lack of worry possible. As long as I’m feeling good enough to sit and watch the ocean, I’m sure I’ll be thrilled with the trip.
And when I get back, the planning for the next phases of treatment will ramp up as fast as I can manage it. I also need to think about my bucket list. What do I want to do if I'm fine for a year? What if I lose so many mental skills that writing — or reading — becomes too hard? What if I actually live longer than a year? What would I add?
I'm sure I'm going to be pulling my guitar out a lot more. I've played since I was a kid, never well. But I've always enjoyed it. And always stopped for months or even years. I'm going to cook more interesting things — cookies and meat and deep-fried stuff and salads. I'm hoping to see more friends more often, some here in Texas and some maybe in New York or Alabama or North Carolina. But I'm almost certainly never going to get to one travel target I've had for years: Australia and the Great Barrier Reef. Sigh.
So these days, I’m trying to maintain an appropriate amount of hope while keeping a realistic understanding of what’s likely. Based on what I now know about my specific case of glioblastoma, I can probably expect to celebrate my 63rd birthday in January 2018. Getting to my 64th has far lesser odds. Getting to 65 may have odds for me closer to a lottery ticket.
Someone does win the lottery, though.
And if I make it long enough, there may be new and better treatments kicking in. I hope even to write about that a bit, along with other medical and scientific aspects to my experience going forward. We shall see whether occasional writing remains an ability of mine.
The variety of medical attacks on GBM has become remarkable, by the way. They include viral attacks against the cancer, viral vaccines that are supposed to trigger normal body attacks against the cancer, several kinds of other ways to boost the body’s immune system, and an electrical stimulation that should reduce cancer reproduction.
There's a long list of clinical trials here.
Why is glioblastoma getting so much attention, given the relatively small number of new cases each year? That’s one story I hope to tell readers at some point, particularly because it matters so much to me.
I have some reason to be optimistic about my bad news. I was born in 1955. Had I been born in 1855, I’d have been dead at least three times by my current age.
I became a Type 1 diabetic at the age of 30. That was a year when human insulin availability was high. And the ability for someone with insulin to track his own blood sugar was pretty good. Sophistication has gotten even better.
When I was 35, I developed colon cancer as a result of colitis I’d had since I was in my late teens. Sophisticated surgery removed my entire large intestine (it was pretty useless) and, as it turned out, 100 percent of the cancer. No chemo needed.
When I was 59, I developed follicular lymphoma, one lump of cancer in the upper part of my left leg. Not so much to need chemo, but enough to get radiation treatment. I was told it eventually comes back for 2 of every 3 patients. But for me, it hasn’t.
Hitting the cancer trifecta isn't common. A study by the American Cancer Society on 11 million cancer survivors in 2005 showed that about 8 percent developed a second brand new cancer — 880,300. The report doesn't count third cases. If the percentage of two-timers becoming three-timers is close to the percentage of one-timers hitting two, that would mean about 70,000 people. Not enough to pack one decent football stadium.
But I’ve had good luck with my medical bad luck for a while. Not only have I kept working, I’ve scuba dived, snow skied, married, traveled and hit some pretty good restaurants in the years since those attacks started.
Will I get some extra time beyond the best current medical data about glioblastoma? Damifino. But I’m pretty confident that my doctor and I (and my wife) will have set me up for the best and newest treatments.
I’m even a bit cheerful about whatever future I’ve got. After all, there are lots of things I didn’t much like to do that I now don’t need to worry about. I asked my top oncologist, Dr. Karen Fink, founder of Neuro-Oncology Associates, whether my upbeat attitude was weird.
Unusual, she said. But not necessarily bad.
“It’s better to be cheerful than depressed. We often have to put our patients on depression medicine because the brain surgery itself can cause some depression, and of course looking at this diagnosis is also depressing,” she said. “It’s OK to be cheerful because we want you to feel as good as you possibly can. But don’t feel that if you are sad, you are somehow making your tumor worse. I don’t like patients to feel pressure to always be cheerful.”
I've had more than a few things happen since Dec. 10 that have justified me staying cheerful. I've felt OK. No pain. Not much lost ability. My friends and family have been universally encouraging and have done surprising and wonderful things for me.
And I've been riding my new trike. One day, Marni and I went pedaling. We stopped at the bank a block away, then at a bike shop where Marni's bike needed adjustment, about three miles away. And then to lunch at a restaurant a block farther.
At the bank, I pulled my wallet from my fanny pack. At the bike store, I didn't. At the restaurant, after lunch, I reached back into the fanny pack. The wallet was gone.
It wasn't at the bike store. It wasn't at the bank. It was no place else I could think of. That wallet was fat with credit cards and information cards and my Texas driver's license and some cash. Even my decades-old scuba certification card was in it, just because I liked it.
By the time we got home, I had to get hauled downtown for my weekday radiation treatment. By the time I got back home from that, I was exhausted and depressed. I took a nap. And when I woke up, I forced myself to make a list of all the places I'd need to call.
I was in the middle of my second call when there was a knock at the door. Marni answered it and called me to the front. A 20-something guy with a scruffy beard was there. My wallet was in his hand. Benjamin Baugus told me his "old lady" had found it in the street.
Jennah Rodenbaugh was parked in their car out front, with their young son, Zane. They live nearby, in a house his aunt rents. He works for a company that makes home fences. She's a waitress at a restaurant in Addison.
There was nothing, nothing, nothing missing from my wallet. They asked for no reward. We gave them one. I thanked them over and over and over, telling them that I had brain cancer and they'd changed my day. Not long afterward, they both became my Facebook friends.
That I lost my wallet may be a small sign that my mental sharpness has diminished. I probably put it on top of my fanny pack and didn't zip it in. How could I not have paid attention?
But my bad luck, once again, got some good luck. I'm willing to hope that's not the last time it happens.
Here's what I'm telling my friends these days: I'm going out like fireworks.
