There are several Facebook Groups dedicated to brain cancer in general, as well as glioblastoma specifically. I personally prefer the more active ones who are more geared to sharing information, not just focusing on venting. These are groups I recommend when you need emotional support as well as to crowd source information and compare notes fast.
1) Glioblastoma Support Group – (https://www.facebook.com/groups/gbm4cure)
This is a very supportive group of patients, caregivers, family and friends. This group shares a lot of information on different treatments we are going through, and helps answer questions about what to expect. There is also a very long list of resources files hosted by this group that you may find helpful in your GBM journey.
2) Private GBM Diagnosed Support Page – (https://www.facebook.com/groups/gbmdx)
For those who are personally diagnosed with a GBM (or any other Stage IV primary malignant brain tumor) and need a safe place free from caregiver vents, obits, etc consider joining the private support group for our members – search for the group GBM Brain Tumors and ask to join the private support group for direct contact among those diagnosed with GBM.
3) The Next Step – (https://www.facebook.com/groups/GBMNextStep)
For those that have lost loved ones to GBM and want to continue the support found in the first group above, with a focus more on bereavement topics. The Next Step (Coping after a GBM Loss)
4) Vietnam Veterans with Glioblastoma Multiforme Stage 4 Brain Cancer – (https://www.facebook.com/groups/772344182841642) GBM support group for Vietnam veterans and their families and caregivers. (A connection between Agent Orange used in Vietnam and GBM has been proven.)
5) US Military – (https://www.facebook.com/groups/160894770984399/) GBM support group for US military personnel and their families and caregivers. (Full disclosure – this is a group that I started. John and I have seen so many servicemen in the waiting rooms and some people say that the researchers at Duke have noticed brain cancer being on the rise for military personnel. But the VA does not acknowledge this. So I wanted to create a space where military families struggling with GBM could connect.)
6) Novocure, Optune Support For GBM – (https://www.facebook.com/groups/347097922150691) A group specifically for those patients who are using Optune to fight their glioblastoma. Those interested in learning more about Optune are welcome to join as well.
In 3 more days, it will have been 9 months since I rushed John to the ER. A lot has happened in 9 months. Most of it has been non-stop crisis mode and a series of hospitals. I registered this domain back in March, and wanted to write about everything happening to us along the way. Have a space to share information and vent. But it has been hard to carve time, much less bring myself to it. Mainly because it takes time to process the feelings, even in writing. Even when we all need to vent at times.
As everything caved in and came down on us that first week, I guess I sort of cried out for help to all my friend online and off, before the waves folded in and things went dark. I didn’t remember to share with everyone what John was diagnosed with, just that he was having brain surgery and that he might die.
It is no exaggeration to say this is possibly the scariest cancer there is. There’s not only no cure, there’s no clinical use of the term “remission” either. Anyone who uses that term with GBM isn’t medical or they’re referring to a different kind of brain cancer. That statement is not a lack of faith or hope speaking. It’s just the facts.
John was 47 at diagnosis (just turned 48 last week). His initial prognosis was maybe 12-18 months if he did brain surgery and the combined radiation/chemo treatment that’s “standard” for fighting glioblastoma. Without treatment, it would be maybe 3 months.
That very prognosis is what they tell nearly every GBM patient, because it’s the current mean survival rate of this devastating orphan disease. But they still don’t understand enough about why people get it, or why/how it happens, or why some people survive while most others simply don’t. Which makes it pretty impossible to really tailor a very specific prognosis for an individual. No matter how large or small the GBM, this window is pretty much the prognosis.
“Long-term” survival for GBM victims is defined as surviving for over 2 years. Only 20% of patients with glioblastoma make it to 18 months, 12% of GBM patients make it to 2 years and less than 5% make it to 5 years.
It is the fastest cancer, with the lowest survival rate. And one of the most underfunded cancers in research. Still no one knows what causes it. Not really. No one does anything to get this cancer. Even crazier, as a primary cancer it literally develops overnight. It can double in size every 2-4 weeks, leading doctors to tell patients upon diagnosis – it’s true, just 4-6 months ago there wasn’t any cancer in your body. Even odder, most primary GBM patients never have any other kind of cancer. It just suddenly happens in the brain, kind of like being struck by lightning. And no one knows why.
The crazy goes deeper. John was the poster child for fitness and health. Organically minded, paleo, you know – not the guy you’d expect to have any cancer ever. But it turns out – even that is not uncommon with GBM. There’s an unusual number of vegetarians, fitness folks, etc. who become victims. GBM is a series of DNA errors that no one can explain. Only 3% of cases even have a genetic component. There’s been a proven connection to agent orange in Vietnam. Certain types of radiation exposure. And that’s it so far. There is so much cancer in my family, even pancreatic. And yet I was not prepared for this mind-boggling experience. Still feels like an overly dramatic Hollywood movie. Any minute now… please yell cut.
Since that beginning back in March, John has had 2 brain surgeries. The first was a failure, done at the local hospital. The 2nd was done at MD Anderson. During the 2nd surgery an artery was compromised by the tumor built around it. It was lost and John suffered a stroke. They weren’t sure if he’d be able to walk or talk when he woke up. He pleasantly surprised everyone and did. Although his aphasia was and still is significant. In spite of the loss of the artery, they were able to remove all the brain cancer they could see. However, this kind of cancer operates at the cellular level, which they cannot see. So while the mass was removed, they can’t find and remove individual cells with surgery. Hence, surgery is never a cure. it just helps in the chemo fight against GBM to remove as much as you can first.
The next step after that was the standard treatment of 6 weeks of combined radiation and a chemo agent called Temodar, also at MDA. So we did the combined treatment as guided, but it was a failure, just like the 1st brain surgery. After 100% surgical resection (removal of the brain tumor), glioblastoma came back and spread throughout his left brain in just 3 months. It’s not even a tumor anymore. It’s a diffused cloud of cancer. And John’s eyesight was affected, causing him to not be able to continue therapy for his aphasia.
It turns out that John’s cancer is incredibly aggressive even for GBM. And somehow it’s the type that has the ability to not only resist toxins, but heal itself. 😦 Simply bewildering. It seems literally superhuman. His particular type of Glioblastoma is the unmethylated type. Which generally means it can resist and repair the damage inflicted by the chemo agent Temodar. However, the test to find out whether GBM was methylated or unmethylated takes weeks to get back. And MD Anderson wasn’t going to wait around on treatment. As soon as his surgical scar was healed, they got him started on the standard combo treatment of radiation/Temodar. The problem is, while recurrence is incredibly common, recurrence within less than 3 weeks after completing the 6 weeks standard treatment is not so common. And for it spread throughout his left brain into multiple parts of his brain, from nothing that could be seen to everywhere, was shocking to his doctors as well as to us.
No one knows what his prognosis might be now. It’s all rather experimental from here. And there are few treatment options left.
John’s now on another treatment called Avastin (an angiogenesis inhibitor), combined with a chemo agent called Lomustine. In general, it doesn’t work for about 70% of patients from the get go. But so far it’s working for John. Still, Avastin doesn’t have a very good long-term success rate against GBM but while it is working it’s known to improve the quality of life greatly. And I would say we definitely are seeing that with John. Of the patients that Avastin does work for, it’s only successful past 5-6 months in about 1/3 of the cases.
Combining Avastin with Lomustine showed some promise in earlier trials, and may help improve the odds of it working longer-term. Essentially John’s oncology team is trying to recreate the results of that trial. It’s now been 14 weeks since he started the new treatment. So far he’s responding to the treatment and the cancer has receded some. It hasn’t gone away, but it is greatly reduced compared to the shock of early recurrence back in July. And his (and by proxy my) quality of life is improving.
We hope John continues to do well on this treatment and that this medicine successfully kills his cancer and that he regains his full capacity to communicate and live life. If not this, then something else that MD Anderson feels is better. However, as his care partner, I’m working on laying the groundwork for backup plans in case this treatment fails and MDA runs out of treatment ideas. So far, John does not currently qualify for any trials. Efforts I’ve made at reaching out to various places have not born fruit (yet). I still have more possible leads to check out. A couple of friends are helping me research so I can keep plugging away at a backup plan. Because the one thing these last few months have taught me is that timing is everything. In fact it’s crucial.
That said, John has been able to do some things these last weeks that he hasn’t been able to do since before the surgery. He’s finally been able to even laugh and joke, something that’s such an essential part of his laid-back personality that I didn’t get to see for months while his brain dealt with the trauma of it all. He’s regained facial expressions I hadn’t even realized I hadn’t seen in months, until I finally saw them again. Little by little, things seem to be coming back. And he’s regained some use of a couple of fingers that haven’t felt and worked quite right since the surgery.
It doesn’t mean everything is back, or that things are like they were before all this happened. They aren’t. But things have improved and turned from the edge of a dark abyss.
It’s been nearly 8.5 months. And I’m still incredibly angry.
This disease shouldn’t exist. It isn’t fair.
John didn’t do anything to deserve this. I didn’t do anything to deserve this.
It feels like God is taking my husband from me. A good man. The one who helped me heal.
The whole reality is pretty awful from both John’s and my individual experiences.
And because I know everything I do now, it kind of makes things worse than before when I was still gasping for air.
It’s easy at first to think that surely there’s a treatment, like all these other cancers. Surely all we need is to work hard and everything will be OK. Surely there’s time to explore options.
It’s easy to think that since John never did drugs, didn’t smoke, ate and exercised well, that whatever this was, it could be conquered.
The young are always naïve.
I never know when I’m going to break down into tears and it sucks. Being a mother and military wife helped somewhat to prepare me for this, but not enough of course.
Support groups help, but aside from preparing for possibilities, it also exposes you to a lot of collective pain. There are so many possible scenarios, mostly all leading to the same outcome. Like a “which way” book with 100 different endings, but only three that are happy.
At the same time, reading everyone’s stories also makes me incredibly grateful. We’re not dealing with a lot of the things other people are.
Some people have really horrible families. I can’t believe some of the things I’ve heard. Some patients have no insurance or their insurance is denying their treatments because they cost too much. Some have newborn babies. Or paralysis. Or rage from brain damage. Or some patients have lost all ability to feel love or care.
So as hard as things are, I keep reminding myself that these things could be worse.
And that I just have to keep trying to capture memories and make a difference.
Communication and memory issues are usually the hallmark symptom that initially brings a GBM patient to the ER room where they finally find out they have glioblastoma. Sometimes these symptoms disappear after surgery and/or treatment, but often they plague GBM patients continuously in one way or another. Stroke, seizures and cancer all have a negative impact on functions of the brain.
I’m not a scientist, but I did study special education for a time, specifically working with severe and profoundly mentally disabled children. And though I later chose not to take that career path, I find that what I learned then gives me a lot of helpful perspective in what my husband is going through now. The brain is fascinating and powerful.
The good news is, given time, and if the brain can get ahead of the cancer, it can rebuild itself. There are so many amazing case stories out there just in the stroke community alone. GBM is so fast, it’s hard to get far with brain therapy, but if we can get ahead of the cancer, the rest can come back.
Radiation (and stroke during surgery when an artery was damaged during the procedure) had a negative effect on my husband’s memory. However, about 4 months after completing radiation, it was coming back more. About the time his hair was growing back in! He still struggles with aphasia and apraxia, but it’s getting better.
People often describe a brain cancer patient as being sort of like a child. The childlike part is really more related to what brain trauma does to us. Essentially, the brain sort of resets itself when it’s undergone trauma like that. Not that the patient is a child as much as it’s like a computer (their brain) that’s running through all its files in defrag from the beginning. In other words, the patient is often essentially in a constant state of defrag. The closer to the trauma, the more the brain is simply focused on its greatest needs, just like it is in early human development, whatever those core needs are – that’s what’s fixated on.
Often our more cultured side is stripped out of the equation during that kind of recovery, depending on the location and level of trauma. And if you thought about the phrases used by a GBM patient, that is being interpreted by others as being harsh, too direct, rude or hurtful – in the context of coming out of a 4 year old’s mouth – we would realize we are no longer offended. Because in that context, it makes sense to us. We know that a 4 year old brain communicates a certain way because they have not developed the cultured aspects that an adult brain has to choose from.
To be clear, I’m not saying that a GBM patient is like a child. I’m pointing out how our brain handles damage and trauma. The brain needs what the brain needs. In extreme circumstances, the brain will use whatever means necessary to try to get what it needs, even going primal. It’s a fascinating, living machine.
At its closest to the trauma, bit by bit, the brain runs through its files, finding errors and missing pieces in the pathways. It needs to make patches and recreate new pathways and records. There’s a lot of physical stress and brain racing during these more traumatic stages. And because the entire system is in shock, all processes tend to slow down a bit as resources are allocated.
Getting to deep sleep is imperative for recovery as well. (Melatonin supplementation is highly recommended, both by us and by John’s oncology team.) We’ve also learned that glioblastoma patients often respond very well to the same kind of therapies used with TBI (Traumatic Brain Injury) patients.
The first 3 months were tough with my hubby. His ability to deal with and process emotions was all over the place. I didn’t hear the words “I love you,” “thank you,” or “I’m sorry” at all during that time. I’d say I love you and all he could say was “I know.” And he came off harsh and demanding without a whole lot of his usual nurturing self.
But it came back. I remember the week he first said I love you again. I cried so hard. A little bit later he softened more and started saying, “I’m sorry, I didn’t mean to sound like that, I’m trying to say ____.” Today we have near normal conversation, with some issues from aphasia. And it was only a few weeks ago that I realized his more usual facial expressions were coming back. I hadn’t thought about how they hadn’t really been there in months, but when I starting seeing them again, I realized that’s just one more part of communication that is affected by the aphasia.
However, when he’s tired, or has a seizure (which really sucks the energy out of him), he’s less “adult-ish.” Or if he misses his workout for the day. (Seriously, it helps!) Thankfully, he often apologizes if he’s grumpy.
The neuro psychologist told us it takes an average of 18 months for the brain to recover from a brain trauma like TBI. And obviously GBM is worse.
It’ll come back with time and stimulation. Make activities count. Be forgiving. Give the brain every opportunity to rebuild the broken pathways between records by utilizing a multi-pronged approach to “remember-education.”
It’s not as slow as learning from the very beginning, but it does take time, good diet and deep sleep.
Recovery from brain surgery, stroke and brain cancer is a big deal, no doubt. But it is doable.
There’s no doubt about it, glioblastoma almost always affects a patient’s memory. Especially short-term memory.
We should all keep a record of our passwords and important details somewhere, so our families can handle things should an emergency come up.
However, so often we don’t. Or we forget a few accounts here or there.
In my grandmother’s day, the amount of accounts she might have had to manage were definitely less than we tend to have per person today. Not to mention, the steps involved for account security have also changed.
As soon as possible, get that information down.
Overall, we’ve been fairly lucky. I already handled a lot of the bills and finances before John’s diagnosis. However, the week he went to the ER, he couldn’t even operate a computer. And to this day, spelling is often very difficult for him. And he cannot remember how to get into any of his work information, with all the layers of security it takes just to log into his employee account. And I have no idea either.
John has had times when his memory is suddenly there. The more tired he is, the more he forgets. The less tired, the better his memory.
So I started keeping a journal just for user names, passwords and instructions as they come to him.
We never know when John might forget again. It doesn’t help to try to force the information out, as stress seems to make memory worse. So I keep the journal nearby and just grab it anytime something comes up, even when conversation is casual and something out of the blue just happens to occur to him.
Memory is an odd thing, especially for a brain cancer patient. Some days things are easy, other days, it’s just not. It’s not always predictable when memory will be there to serve or not.
So prepare ahead. Keep a journal handy. Go over things at the end of your day and write down anything that seems even a smidge important for later.
I’m frustrated with the things people around me think and say.
They don’t even read outside their spammy, fringe tabloid websites. And yet they dole out advice like a knowing sage. Like I’m not killing myself reading every medical study on glioblastoma that I can get my hands on. Asking every intelligent question I can to milk every answer from the oncology team at MD Anderson. Reading journals on everything about brain development, brain damage, traumatic brain injury, stroke, brain cancer, brain recovery, and everything that could possibly be related or help.
You know nothing about brain cancer, John Snow. Much less about glioblastoma. And you know nothing about the depths of my love and dedication to John either.
“Everything will be fine, you’ll see.” Like my husband’s not hanging off a razor’s edge, facing something serious and “cancer is so curable today.” Like if he stopped treatment today, he wouldn’t have just mere months left to live. Like it’s not such a big deal that my husband wants every moment with his kids he can get. Because he doesn’t know how long he will be able to remember things and communicate. How no one gets that “mind over matter” doesn’t work so well when your brain is being attacked. And then again, just because your brain is being attacked by cancer doesn’t mean that you have dementia. Or that you’re crazy. Because it doesn’t. They aren’t the same.
Even cancer survivors of other cancers say things like, “Just have faith, that’s how I cured my cancer.” “I know you’re just trying to fill up your schedule so you don’t have to think about how helpless you feel.”
I know plenty of people, more faithful than I, who are now dead. And NO. I don’t want to be this exhausted as a wife and mother. I don’t need more work to do. I don’t want to be this afraid that I’m not filing disability correctly, this overwhelmed about yet another phone call from disability, or whether I have forgotten to see to some benefit that we might lose because John cannot work anymore. Whether I’ve filed everything correctly and whether I can find it all when I need it next. Because the last 9 months has been a string of hospitals, surgeries, stroke and crisis. And I can’t remember details like, where could that paper be? if it wasn’t filed properly from the get go.
How afraid I am that someone at the grocery store is going to ask me how my day is and I’m going to burst into tears right there. How I wish I didn’t have to do all the shopping.
I am NOT trying to fill a void. I am trying to navigate all the paperwork, be two parents, communicate for my love who cannot advocate for himself completely, feed and drive everyone to everywhere while family and friends have mostly dropped off as far as help. In the beginning they overwhelmed me while he was in the hospital and there was nothing I could give them to do. Now when there are no nurses to help, no one to help fix meals, clean house or run errands, and when all the bills are showing up due, everyone’s busy. I’m trying to capture every moment I can, but I’m overwhelmed by how much work there is to do, and how it’s stealing every last-minute I have with John and even with my kids, away from me. And every moment of joy from me. I don’t have time to breathe, much less sleep or take a break and get a haircut. I have trouble remembering everything. I’m so tired I’m getting slower at everything. I begin to wonder if I have brain damage too. In reality I know I need to talk to someone, but there’s no time for that either. Anticipatory grief is there too. And it doesn’t mean that I’ve given up hope, or that I don’t believe in God. But I do know the reality of the battle. I do very well know the stakes.
I’m pretty damned good at researching and calling companies, asking for help, asking to talk to the advocacy departments, but I am alone to deal with all of this. While my hubby complains that he doesn’t get to spend enough time with me because I’m always on the phone sorting out our insurance, or on the computer paying bills, printing forms, answering emails from teachers, and still working from home, like I have for years. But it’s all so hard when I never get even an hour of dedicated time to focus. My day is constantly divided. And I’m constantly having to worry about what my hubby is doing. Making sure he hasn’t forgotten his medicine. Making sure he’s not seizing.
And I feel so guilty. For everything. I’m a failure. I’m not succeeding at it all. I’m a responsible person who has tried to lead an honorable life. And I’m failing.
It’s not fair. None of it is. And just because I burst into tears on occasion under the strain, doesn’t mean I have a bad attitude, that I’m living my life in a negative state, or lost my faith or that I’m not dealing with things as well as I can.
And then on the other hand, it’s all the advice.
“Have you tried NOT doing chemo? I’ve heard it’s worse than the cancer itself.” Um, have you read ANYTHING about Glioblastoma??
“Make him eat alkaline foods. Cancer is caused by acid.” Primary brain cancer is a different animal. Please read up on it before you tell me what you think I should do.
“Is he listening to enough classical music for his brain to recover from the stroke?” “Don’t let him watch too much TV.” “Keep his blood sugar low.”
I mean geez, you’re not here living through this or taking care of him! His blood sugar is already low because we’ve been paleo for years. And too low triggers seizures and stroke. Additionally, that Keto Diet you read about was modified into essentially a paleo diet (without the organic focus) and found to be as or more effective for brain cancer patients! And easier to live on. And it’s boswellia EXTRACT, not essential oil that showed promise as a potential assistant to chemo. Turmeric needs black pepper to be absorbed properly. And Vitamin C infusions can be incredibly dangerous if your blood isn’t tested properly first, and it definitely cannot be carried out at the same time as chemo.
I’m sorry to say that with glioblastoma, you can’t wait around for your doctor or anyone else to educate you on everything fast enough. There’s so much information to absorb and so many decisions have to be made quickly. You simply don’t have time to wait on them to learn what you should be asking. There is a lot for you to prepare for. Timing is everything.
And while you may not be accustomed to reading medical studies, you need to get started.
Don’t know where to start?
For GBM newbies (and any one else interested), I collect glioblastoma related studies and articles on my Pinterest page. It might help you as you begin your search for information. I try to be picky about what I include there.
Also, go to Facebook and Twitter and use the hashtag #glioblastoma to search out resources and articles.
I’ve thought about this so many times. There’s an incredible lack of support available to brain cancer patients and their caregivers as a whole, but especially for families dealing with Glioblastoma, the fastest, most aggressive cancer known.
This burden is so great in the GBM community, it has even been studied. I don’t know entirely how I can make a difference, but I aim to. And this blog is part of that beginning attempt to, while I struggle to bear everything I do.
In some ways, this experience is all too familiar.
I remember how when my husband first deployed, there was no Family Readiness Group (FRG) for support, but for his 2nd deployment there was – sort of. It was odd for us, because none of us lived in the same town and there was no full base nearby. Our soldiers were almost all Texas National Guard and had been cherry picked from all over the state. Supporting each other was not easy, and the military itself pretty much did nothing, as we were not “regular army families.” But we tried to band together. We planned gatherings, got our kids together and tried to be an ear for each other when we could. We even raised money to send our guys better gear than what they were issued.
Ideally, an FRG functions to support the family while a soldier is deployed. Minimum wage for soldiers rarely pays for everything, there’s always financial and emotional stress and the stress levels as a deployment parent are incredible. We’re left holding the whole bag, with half the power and resources. Cleaning house with each other, sharing meals, sharing frustrations and comparing parenting notes with others who know *exactly* what you’re going through. These are the magical things we did. Generally you’ll find older members who also join to support a group, even when their soldier is retired or not deployed, just to be a voice and guide of experience. Even in an imperfect situation, a support group like this is valuable, and at the very least – better than no help at all. And better than no emotional support for your children at all. Those gatherings, even as few as they were, were priceless in helping my children deal with the temporary loss of their father. And getting to meet other kids who knew exactly how they felt, without a lot of preconceived ideas that outsiders and the disconnected always have.
And the way I see it, we’re all in a battle of our own in the GBM community.
And we need something like an FRG. Made up of those of us going through it now, those of us who’ve been at it for awhile and even those of us who no longer deal with GBM directly, but have the scars to prove they lived it.
John and I have talked about it many times. We don’t know how we’ll pull it off. But we don’t want all this to be for nothing. We want to make a difference and somehow shift this reality and transmute it into something worthwhile.
The lack of support for GBM families is one area that stands out. Sometimes we have great families and friends. Sometimes those people are helpful. Sometimes they unknowingly cause more stress. But those of us living it, we get it like no one else.
And it may just be that it takes us to create the framework for a support system we so desperately need.