Tag Archives: Glioblastoma

Glioblastoma Updates…


May is Brain Cancer Awareness Month

Go Grey In May - graphic by Aberrant Crochet

I just want to say that I am truly grateful for everyone who checks in on John and I.

Things have not been so great lately. And I’ve been really struggling this week. Some of you drop in virtually and I appreciate the nudges. They help steady me when I feel so dizzy sometimes. And because it’s been so chaotic and emotional, I haven’t been able to wrap my head around writing very much.

John’s glioblastoma has been on the move. The first signs appeared with the New Year. And his GBM never fully disappeared in the first place. He went through a flurry of uncontrollable seizure activity and blood pressure issues in February and March. I actually think it was the uncontrollable blood pressure that was causing the seizure events. Then his liver enzymes started getting too high in February, so they were discussing pulling him from the Lomustine (CCNU) because they wanted to give his liver a break. However, MRIs in early March confirmed that the GBM had become resistant to the Lomustine. So that cinched it. It’s no longer a viable treatment.

John’s NO team decided that the best course would be to do 4 more weeks of radiation to the brain, and continue with Avastin, so that his liver could take a break and then regroup after for a new chemo. Avastin has been shown to offer protection to healthy brain tissue (but not cancer) during radiation. You can’t fight active GBM successfully without a multi-pronged attack. So it definitely seemed like the wisest route. That way his liver could recover and we could see how another chemo would do after that. It was worrisome though. Radiation combined with Temodar did not hold back John’s GBM last time. Wasn’t sure Avastin combined with radiation would this time either.

Unlike last time though, John had nausea and vomiting during this recent round of radiation treatment. He lost his strength and even started to lose feeling in his right hand, arm and foot. And he experienced more uncontrollable blood pressure and seizure events. So while he was receiving the radiation, they also changed up his blood pressure and anti-seizure medicine. And they added meds for the nausea. It took about a month, but it seemed like the new blood pressure and anti-seizure meds were a great improvement and his tremor and other seizures stabilized.

As predicted, John’s liver enzymes started to decline. While the radiation symptoms were pretty awful, it seemed like his liver was recovering as hoped. In talking to other wives of GBM patients who receive a 2nd round of radation, I learned that for most of their husbands, if they lost use of one of their hands, it came back generally within 3 months. John finished the radiation about a month ago. There has been some improvement in the feeling in his hand. It’s not back yet, but we hope this is a good sign.

A week after he completed radiation, John’s liver enzymes shot up, nearly quadrupled, for no explainable reason. He hadn’t had a dose of chemo in 2 months, and the enzymes had been coming down. But suddenly overnight the enzymes skyrocketed. They ran every test they could think of and he was negative for everything. It didn’t make any sense.

So next came CT and MRI. They found what appear to be 2 small tumors, at 1 and .7 cm in size, on his liver. And because of that, he’s been pulled off of all brain cancer treatment, waiting for a biopsy to be done and for those results to come in. Of course, everyone’s worried that the spots are cancer. There was a mention in the MRI notes that there were some unusual blood vessel formations. I hold out hope that maybe these 2 spots are more weird knots of blood vessels. And that they figure out what’s distressing his liver. Nothing about the liver distress makes sense.

The biopsy is this week. And it will take 3-5 business days to get those results back. Meaning John will not even receive Avastin before the end of next week. Avastin is not like typical chemo, as it’s an anti-angiogenic. It helps starve the GBM, reduces brain swelling better than steroids and overall improves quality of life. But he will have gone a month without any protection from GBM by then. And the swelling caused by the radiation is no small thing either.

GBM can double in size every 2-4 weeks. And John’s last ABTI/MRI showed multiple seeding areas of his left brain, possibly trying to move to his right brain.

Regardless of whether he has liver cancer too, which is so super incredibly rare in GBM cases!! the glioblastoma is faster. But there are 1% of GBM cases where it becomes gliosarcoma. Needless to say, it’s worse than regular glioblastoma.

It’s just all so crazy.

And I’m struggling. I want to be positive. But it’s scary and it hurts. Deeply through my soul, piercing lifetimes of my heart.

John had 68 different appointments with oncology teams between February – April  alone, 52 of which (plus an ER visit) in Feb/Mar. Every bit in effort to save his life, and unlock the key to GBM. It’s what it takes with this cancer. If you want to live, you don’t relax. You don’t pick the easiest path. You get your ass on the road and you go. You ask every question and figure out how to meet your doctors half-way. Because they can’t do everything. You gotta be interactive or it won’t work.

And there’s so much more than just that to do. I can’t seem to keep up. Our kids help, I barely sleep and it’s still not enough hours it seems.

And all I want to do is be with my love. Not chase papers and run errands. Capture every moment. Go out to lunch and see a movie.

But crowds and sounds cause him pain right now. He’s so tired and his headaches are getting worse. He can’t help me right now.

Dear God, I love him so much.

It’s been 14 months and I still cannot believe that this is happening to us. Or that it’s been more than 3-4 months.

There are some bright spots of hope though.

John’s recovering from the stroke. It’s taken time, but the quality of his communication (with the apraxia and aphasia) is improving. Except when he’s at his most tired. Which is a lot lately. But still, the quality of his conversation is markedly different today than it was 6 months ago.

Also, our family attended the bi-annual Together in Hope Brain Tumor Conference that MD Anderson puts on for patients and their families. It was an amazing gathering of information and people within the brain tumor community. And we met other families and survivors there. The trip was difficult for John, he really didn’t feel well. But it was so good for our family.

And, John’s NO team is trying to get Optune for him. I don’t know if insurance will cover it or not. Or if he’ll receive it fast enough. But hopefully we’ll know something about that by end of next week. Optune is promising, but I have no idea if the biopsy this week could change even that. But we met a 4.5 year survivor a the conference, who’s on Optune.

So there are things to hold onto in this upside down twist of events.

I hope and I pray that somehow, this crazy set of circumstances is a divine plan to get John the treatment he needs. And that the Optune works and allows him to live a normal life. Allows him to recover. The brain is amazing. Given enough time and proper therapy and exercise, it can recover nearly every skill it’s lost. If we can get ahead of the GBM.

I finally put together a Facebook page for John and our fight against glioblastoma. It helps to tell our story a bit better in bites than I can on my blog here. If you would like to follow along, you can find that page here.

Thanks for listening. Lots of hugs. And stay safe out there y’all.

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Filed under Friends and Family, 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