Category Archives: Glioblastoma

Logic Isn’t Always…


My meditation today…

One of the GBM patients in one of our support groups went holiday shopping with his wife. They went to pick out a gift for their daughter. It was a triumph, because he hasn’t felt good enough to get out of the house in so long.

Unfortunately, he has aphasia and he’s lost his peripheral vision. All too common for glioblastoma warriors. He tripped on a display he couldn’t see at a store and knocked everything down. He was so embarrassed.

As people helped pick it all up, someone had the gall to tell his wife that she should make him lay off the booze before going out in public. The wife doesn’t know if he’ll go out with her again.

I’m appalled for their experience.

But the thing is, I know that before I understood this disease, I might have thought he’d been drinking too.

I wouldn’t have said anything, but it is very possible that I would have thought it. Because I simply had no clue before. I didn’t understand brain cancer at all.

*Maybe* my experience with disabled children would have helped clue me in, but if I was busy, I doubt it.

Our perspectives in life are often reasonable, based on logic and data we already possess.

But that does not automatically translate into the truth, the whole truth and nothing but truth.

Logic alone does not make us fair and just. Seemingly reasonable does not equal justification.

We are capable of interpreting what we witness and experience as falsehoods. In our justified reasonableness, we can sin against our fellow man.

We can judge and accuse others of actions and beliefs they haven’t taken and don’t have. Because “actions speak louder than words.”

This is why temperance, compassion and love are so important.

They help us to take another look.

Compassion tells us not to jump to conclusions and to offer our hand. Love tells us to hold our tongue and strive not to harm our neighbor. Temperance reminds us that just because we can, doesn’t mean it’s right.

Steven Covey reminded us to shift our paradigm. Every major religion in the world reminds us to be slow to assumption and mindful in our choices. And God reminds us that we are all his children.

Kindness and balance are everything.

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November is coming to an end…


November is coming to an end this next week, as will NaBloPoMo.

NaBloPoMo has been a different animal for me this year.

I tried to write for two blogs at the same time for this year’s challenge, registering my Frell Cancer blog for the challenge along with Aberrant Crochet.

Frell Cancer made it daily for 2 weeks. And then I just couldn’t. So I decided to focus on Aberrant Crochet for the rest of the challenge alone. I haven’t lost the challenge in years. I don’t want to lose this year. And I want to get writing regularly again. I know I need it.

But with just Aberrant Crochet, it’s still been a challenge. And it’s not for lack of ideas of what to write, or a lack of wanting to write.

It’s simply been a lack of energy and bandwidth to bring those ideas to fruition. The difference between a good idea and great writing.

FC fell by the wayside in part because it’s so emotional to write about something cancer related every day. I have so much good information to write about and share, to help other glioblastoma families. I really want to do that. But it takes time to do it right and it also takes all the energy from your emotions every time you relive something.

With AC, I want to write about crochet and fun things. And experiment with various fiction and writing styles, like always.

But… I’m just so wrung out all the time. Life is so much different this year than last year or any other year.

I spend hours on the phone talking to insurance and billing departments, trying to get our bills sorted out. With weekly and bi-weekly medical visits, it’s a constant job by itself.

Don’t get me wrong, our insurance people have been great. Some are even working overtime to help us get things sorted out.

But there are always errors from one side or another. And it always takes a lot of time and energy.

And while I often seem like an extrovert to people, I’m really not. I’m an introvert with leadership skills. I derive my energy and reboot my batteries through quiet alone time. Which I get so very little of anymore.

It’s a constant influx of people. Constantly having to talk with and reason with people I normally wouldn’t have to. Constantly driving all the time. And at some of the doctors offices, the staff are not always friendly, which also wears me out. Natural diplomat that I am. I expend a lot of energy sorting out what’s going on, why are appointments running late, what’s the problem with insurance this time, why didn’t anyone tell us we needed abc before xyz…..

Doing all this for work is one thing. But the stress of handling your family’s personal health is so much more.  And the stress of brain cancer means more than just the fear of John dying and whatnot. It’s all the other stuff it brings into your life.  Including new rules we didn’t use to have to live with.

And then there’s all the management of daily life. Cooking, cleaning, taking over tasks that John cannot do. Groceries, budgeting, rides for the kids, what can I sell, don’t forget work.

With the holiday weekend, I’ve finally had a space where I can focus solely on working on the house. Which needs help.

Come Monday, I’ve a list of phone calls I must make before we deal with MRI, eval and “report card” week for John.

And one more item just got added to my list today. Local lab (new to us) told me our insurance company said we owed the cost for last week’s lab work. I know that there hasn’t been enough time for the lab work to have been filed with our insurance properly. But the technician wanted me to make a payment for something we don’t owe. We’ve already met our maximum for the year. So frustrating. And especially because I think she was reading the notes from her billing department wrong.

So come Monday I will have to call both my insurance company and their billing department, on top of the other calls I already have to settle, because Monday is the only day next week I can really make these calls. (Oh yeah, and work ahead so I can camp out at the hospital all week.) With the NO team wanting weekly blood work, we have to do it asap so they don’t refuse to do the tests. And it’s so close to the end of the year.

Why is the system always so difficult?

Anyway, once I’ve been through a day of all that, it’s like I’ve used up all my energy to write words. I still have my ideas, but the power behind my words is gone. Like running out of color ink on my printer. I can print a pie chart in black/white, but it’s not as useful or interesting.

I don’t like ranting for a post. But this is what’s eating my soul today. I’m trying to pull myself together, finish my coffee and then get busy reorganizing things in my pantry so I can function and figure out a good meal plan.

And, now my post is done for the day. I’ve been mostly writing at night, when I’m the most tired.

Maybe I’ll actually go to bed on time today.

Yeah that might help.

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Delegating…


Helping handFor 6.5 of 8.5 months, there was nothing but crisis and emergency in my life with John’s diagnosis of glioblastoma. Brain surgeries, stroke, seizures, radiation, chemo(s).

It’s not generally how it goes for most. Many John’s age find out when the tumor is smaller and surgery recovery is not as bad. Or they respond better to the initial treatments. Or they have the opposite and simply don’t make it.

It’s a crazy battle to be forced to embrace. Though truthfully, we didn’t pick the easy route.

With John finally responding to a treatment, we’ve finally had a bit of a chance to catch our breath. Mostly in the last month. But only in the medical sense. Only in that we see doctors every two weeks instead of every day now.  As long as he has no fever and as long as he has no seizures.

Fact is, I’m slipping under the pressure and I know it. I’ve been holding everyone and every thing together.

It’s not like people haven’t offered to help. They have, but they don’t know how or what to do. Few people ever jump in. And there’s been so much that no one could take on.

After finding myself running to the grocery store for the 5th time in a week.  Because I forgot something I really needed, like toilet paper or an essential ingredient in John’s cancer smoothies.  Even though I had a list. But there’s so much data running through my head and so little sleep and so many tasks that fall to me. That I can’t remember it all. I forget things. I don’t notice things until they’re screaming at me. I run out of energy. I crash. And I can’t afford to get sick. For so many more than just one reason.

I’ve decided I need to hire some help. If I can find it within the right budget. There are some shopping services in Austin. Like InstaCart and Shipt. I’m going to check them out and Amazon what I can. And I’m going to try to get some house cleaning help.

Friends aren’t always a good choice. Friends all work. They’re busy and have their own families and then there’s the problem when help turns more into reassuring visitors and when they leave, I’m no closer to going to bed earlier.

I am going to also start a Lotsa Helping Hands circle too I think. I’m exploring options. One way or another, I need to find ways to delegate and streamline my day. I’m not sleeping enough. Some things only I can handle. But other things, maybe someone else can help. Even if I have to hire it out.

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The insurance situation is frustrating for everyone…


family-insuranceThere are some things I’m thankful for now that I have experience to provide perspective.

Under current laws, my husband who was struck suddenly with a terminal brain cancer (there is no cure) cannot be denied health coverage.

I have a lot of anger over this issue, because most likely, the cause is related to his military service, but it hasn’t been proven and all responsibility is denied. And let’s face it, his area of service was not highly covered in the news. Deployment was not easy on our family. It was a destructive time for us emotionally and financially. And now, it’s happening again, only worse.

Statistics say if my husband survives another year, he will be an outlier. Extreme cancers like this are horrifying for both patients and families. There is so much you’ll never understand about something like this, without going through it. And I would never wish for you to know what any of it is like. It’s not something you wish on any human, if you are human.

And when it’s your brain under attack, it’s not like you would imagine. it’s not predictable and it is not kind about how it destroys bits and pieces of your personality and life.

Cancers like this are also orphan diseases. Less than 52,200 case of brain cancer are diagnosed per year in the US, and glioblastoma is only about 15% of those cases. Out of billions of people. I think you might have a better chance of being struck by lightning.  Unlike other diseases, there is no known cause for glioblastoma, other than a handful of connections made to certain types of radiation exposure and agent orange. Not even a genetic cause has been identified.

John has been the poster child of health, good diet and fitness for a man in his mid-40s for years. And yet he was struck with a voracious, fast killing primary brain cancer caused by a series of DNA errors. (It’s been proven to not be connected to diet. This feels very much like being struck by lightning.)

I have hated being forced to pay for things that are not useful to me.  I have resented high costs of insurance that would not cover things I wanted to do, like see a chiropractor instead of have surgery. See an acupuncturist, instead of rely on pain meds (most of which I’m allergic to anyway). Etc.I have not wanted to be forced to pay for something that in my estimation is not in my best interest.  Overall, I believe insurance should be more for catastrophic situations and less for managed care.

However, I do believe that insurance *should* cover things like what is happening to my husband. Because no one understands why some of these things happen. They can’t be foreseen. They can’t be predicted. They’re not even understood at any level. There are no known causes. It literally could be you next. It really, literally could be you. There is no telling where the dice lands next.

Insurance is supposed to help hedge the impact of extreme situations, because illness (and accidents) like this damages communities. It doesn’t just take down a person, or even a family. It takes down an entire sector of what used to be a healthy, productive circle of society.  Car accidents happen, and no one wonders if these should be covered. But being struck with an extreme disease that has no known cause or cure? And we question it?

Everyone who ever depended on John is suffering. He was not a small fish who had little impact on the world. He led and saved so many men and women. Both in duty and on his own time. As recently as New Year’s week, when we were on our 20th wedding anniversary trip, he saved a woman and her dog from an elevator during a snow storm and blackout. We didn’t know it then, but his brain tumor was forming by then. And John, as always, did the right thing. He has always protected and served and with a laid-back spirit and wry smile.

If insurance was allowed to deny him coverage because he’s been diagnosed with a terminal illness, not only does it mean his death, likely in 3 months or less, it means an incredibly torturous death. No one can reasonably agree that this would be a right thing to do.

So I must admit, these are perspectives I never had before. As we all argue over required insurance, coverage laws and costs. All the money we overpaid in our lifetime pales in comparison to the fight we’re in now. As to Obamacare policies, I have learned that many deny treatment at some point. Even Medicaid and Medicare denies treatment past a point to many GBM patients. We’re paying for Cobra so John can continue with treatment from a genuine brain cancer center, not just a generalist who knows very little about his cancer.

There are problems everywhere with no perfect solution. But I thank God for insurance coverage right now.

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An Update For The Friends…


Just wanted to share some positive news with my crochet friends who have followed along from afar.  We had positive news from John’s scans a couple of weeks ago.

After nearly 9 months, John’s glioblastoma is finally stabilizing.  His last scans look a bit better than the scans from 6 weeks prior, but mostly similar. Of course, it’s still way better than the shocking scans from July.

The doctors also describe this improvement as “his glioblastoma is ‘stable.'” Meaning glioblastoma is the kind of cancer that’s never actually gone even when you can’t see contrast, but it’s not growing or moving at this time.

Swelling is a little less too. And the scar tissue from his stroke is starting to be reabsorbed, which they say is also good. Cancer’s still there, and still interfering with the visual pathway for his eyesight on the right side, but it’s a bit smaller and not growing right now. So that’s good. All in all, less contrast is good news!

Not only is the current Avastin/Lomustine combo treatment working for John (it doesn’t for most patients) he’s also tolerating it well. So we’re grateful.

Next steps include chasing down specialized speech therapy and some specialized reading/vision help and glasses. John’s vision loss has so far interfered with his ability to get very far with communication therapy, and sometimes it’s potentially hazardous. So this is an important piece of his recovery for us to address.

We may have to pay out-of-pocket for vision therapy and gear, but trying to see if we can get at least some help from our insurance. With all the unforseen expenses on this journey, I’m trying to maximize whatever we can before the end of the year changes anything.

John’s next scans/evals are scheduled for December.

Last but not least — John turned 48 on October 27th — a date he didn’t initially think he’d get to see.

We are all so incredibly grateful. For the precious time together. For the beautiful friends who have helped with prayers and financial support so we can pay for treatment and gasoline and all the expenses that come with cancer treatment. And for all the words of encouragement that prop us up every single day in this storm.

The battle is not over, much less the war.  But at least the constant shelling has paused, so we can regain our balance and breathe a little more.

xxxooo

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It Begins…


NaBloPoMo November 2016It’s NaBloPoMo time of year again. In spite of the chaos and emotional pain this year has been for me, I’ve committed to doing it. In part because writing is part of my therapy in life anyway.

Creating crochet, writing or music. One of those 3 things has always been present to help me get through, sort through, be through.

In childhood, it was my piano that expressed my soul the most. In early motherhood it was crochet that took the brunt.

As an adult, I haven’t had a lot of time to sit and craft at the piano. It requires a living room monopoly to do it and that’s not always possible.

These days it’s writing and crochet the most. And I so desperately need to find voice in any way I can.

Another reason for me not to give up the challenge though is because of the 8-9 years I’ve participated.

The idea that I’m not giving up all parts of me in this journey as a care partner (better label than care giver I think).

And in all these years of taking on this writers challenge, the only time I lost was one year thanks to Thanksgiving Day and no internet access to post for the day. (I have a smart phone now!)

NaBloPoMo was started 10 years ago. So, it’s kind become a part of my soul, being a part of it for so long.

I did take it a step further this year though. I decided to register and commit to posting every day in November for TWO blogs. My usual Aberrant Crochet blog. But also a new blog I’m formulating about glioblastoma.

I registered Frell Cancer nearly 9 months ago and haven’t written a single post yet. Its purpose is to help others who are desperately trying to get up to speed on what glioblastoma (GBM) is, treatments, studies, reality, etc.. Helping others in the GBM community was the point, because there’s so little support for people in that boat around the world. And most people don’t understand how it’s a different kind of cancer than everything else.

Victims always find themselves grappling with trying to educate their families while enduring the shelling that the glioblastoma fight often is. Such a fast, voracious cancer that threatens to destroy your very personality, identity, your relationships, etc.. Everything about you can change into someone you don’t recognize – overnight.

It’s so hard, and there’s a lot of fear. For good reason.

So…. NaBloPoMo will serve as the fire to propel me forward into assembling those posts for that blog. Besides, while I write whatever I want on Aberrant Crochet, I don’t want it to become all cancer all the time. And frankly, there’s a lot of pain in what we deal with in the GBM world. The posts I need to write will not be the most enjoyable kind.

The daily reality of glioblastoma is like living in a fire. It’s not something you really want to experience, unless you need to help someone. Unless you need to understand what families like ours face. These kinds of posts are the kind aimed at helping those who need it, in spite of how sad or shocking it may seem to others. The most efficient way to help those I seek to help most is simply to isolate those posts in one place that makes sense. So, I set aside a place for it. We’ll see how it goes.

Though to be clear, don’t think I’m never going to write about cancer here. I will. It’s more than just a slice of my reality now. And I have information I’m putting together that will help other cancers too. So there will be some cross posting.

You don’t have to be a seasoned NaBloPoMo challenger to know that unless you have nothing else to do, registering two blogs is stupid crazy. Especially if you’re like me and want every single post to count as a real exchange, or a real article. Not a throw-away post to say I posted, but ultimately, it’s crap.

But I think I have plenty I can share. More than anything, time management and structure will be the issue, not words I think.

So… here goes. Today’s the 1st day.

Wish me luck!

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Witness…


John and I talk things out openly all the time.

I have no idea what it is like personally to have two brain surgeries, seizures and strokes and not be able to communicate normally and do what the rest of us take for granted.

I have no idea what it is like to be a husband/father/soldier/bread-winner and not know if I will live a few more months or not.

But living this reality with him, I can achieve a close guess.

Likewise, he has no idea what it is like for me to be his caregiver/advocate/defender/wife either.

There are plenty of bystanders who bear witness to our world.

That is hardly my title.

Aside from the impossible, there are few of John’s burdens I don’t share or carry.

Few of his wounds that I don’t bleed from too.

I am in this trench, sleepless and under fire with him.

And it’s recognizing this reality between us that gets us through the every day trauma of brain cancer.

Together we minister to each others’ worries and pains, hold each other tight and pour love over each other, in every way we know how.

It keeps our marriage alive.

After all, what is marriage but best friends loving each other.

You don’t think brain cancer changes that, do you?

He’s feeling better on the new treatment right now.

We have hope.

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Every Moment…


Every moment is a deep breath and a step forward.

Everything stripped to its simplicity.

A rebirth with each raw heartbeat.

And still…

There is only Love.

Written 08-03-2016, 2:57pm
Copyright © 2016 by Julia Meek Chambers, all rights reserved.

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Filed under Glioblastoma, Poetry, Random Thoughts, Writing

The Things You Dream When Your Husband Is Fighting Glioblastoma


Go Grey In May - Glioblastoma Brain Cancer Awareness Graphic by Aberrant CrochetA few nights ago I had this dream that I was approached by vampires.

We can cure your husband, they said.

We’re really the only cure for cancer there is.

All your husband’s knowledge, all his skills, all the things that he knows that nobody else knows…

These things can live on.

They can be preserved.

We can save your husband.

And in my dream, my husband thinks hey – that’s a great idea!

What a great solution, he says. It’ll save my life, he says.

And I have an absolute fit.

I say – giving up now

to DIE

and become a VAMPIRE

is QUITTING!

And he says, no it will save me.

And it’s not like you and the kids have to do it, it would just be for me.

I will be saved and we can still be a family. You don’t have to become a vampire too.

And I say – if you don’t have the willpower to keep fighting

and keep LIVING NOW,

and you’re going to give up

and become a VAMPIRE

and be DEAD –NOW-,

what makes you think you’re going to have any willpower not to turn me or the kids in vampires too?

What makes you think you’re going to be able to control your new vampire personality traits?

You have a hard enough time getting through cancer treatment and controlling your cancer personality traits as it is.

I WAS SUPER UPSET!

And I woke up at some point because John had to get up in the night. Quite exhausted from all of my dream arguing.

And when I went back to sleep I continued to dream about insurance paperwork.

Then the next night, I dreamed that there was a trial where wives and husbands we’re donating their blood to help with some kind of research to benefit their husbands and wives who had glioblastoma. By comparing the blood from life partners they hoped to come up with something that would help cancer patients. Because in theory, they spend the most time together and live biologically similar lives. So study the partners and look for a connection.

So of course there were tons of us who were like – SURE!

Take some of my blood already!

I’ll do whatever you need to help save my husband, wife, lover.

And so I said yes.

I filled out paperwork and was brought into a little room where they’re going to take my blood and start running tests.

They bring me in, close the door, and they forget that I’m there.

And after a while of waiting I realized that everyone has left the building, and I am locked in this room and no one has noticed.

It all seems like some kind of cruel joke.

Another time I dreamed that without John, I couldn’t protect my children from being kidnapped. Crazy right?

Then there was the dream about John being in his last days.

And friends said they would come over for a visit, share a meal with me and see how he and I were doing.

Several people wanted to come around lunchtime or dinner time, so I made plans  and  got the house ready, prepared food for everybody and got ready for company.

But it turned out that everyone was too busy, and had their own things to worry about.

So no one came or let me know that they couldn’t come after all.

And I waited and waited after making all that food. Then John said I was silly, and wasted my time.

And I said, but I’m trying so hard to do this right.

The reality of GBM messes with your head enough while you’re awake.

And I’m only the wife of the survivor.

It’s a nightmare of a cancer, boggling the mind as to how it can even exist.

There’s too much to do.

I don’t need it eating up my sleep too.

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