Tag 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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Filed under Glioblastoma, Random Thoughts, Writing

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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Filed under Glioblastoma, NaBloPoMo

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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Filed under Glioblastoma

I don’t know yet how to begin to explain…


It’s like all the worst possible challenges you can imagine.

Mixed up with experiencing (mostly) the best possible of people.

And we’re just along for the ride.

I have no idea where we’re going.

I just hang on to John.

Take the next step and breathe.

1:44am
April 10, 2016

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Filed under Random Thoughts, Writing