Tag Archives: brain cancer

May 1, 2019 · 11:25 pm

Roses – Pins for a Cause…

In honor of John’s fight against Glioblastoma and for Brain Cancer Awareness Month, our daughter Jack has designed a “Charity Rose” enamel pin to help raise funds for brain cancer research and awareness.

She is donating all profits to the Dr. Marnie Rose Foundation, which is one of the only foundations that raise money for brain cancer research. Many thanks to Mrs. Rose and Little Matt’s for their support and encouragement along the way as Jack’s vision for this project took shape.

John’s favorite flower was the red rose, so it is fitting that this first dedicated pin be a rose. Jack designed both a red rose and a special grey rose for Brain Cancer Awareness Month. It all started with her drawings, which she then modeled into the many necessary digital files that only she knows how to do.

It is a beautiful design, manufactured in high-quality materials, partnered through one of the most notable pin design companies in the US – and worthy of attention.

There are 150 roses in this first run. Please help Jack reach her fundraising goal and spread the word? If ever there was a cause that I’d appreciate your help with promoting, this is one of them. Thank you for helping her make this work.

https://www.etsy.com/listing/689262850/charity-rose-enamel-pin-brain-cancer

Why We Pray For Others…

monk-prayer Napoleon Hill, widely regarded as one of America’s most successful (and most spiritual) business leaders, believed that a negative state of mind could undo the power of prayer.

He saw that it was important we always keep our minds in the right place when we pray, but also when we go about our daily routines. That a positive mindset was critical to our success and well-being, as well as the manifestation of our prayers and dreams.

Prayer is known in many forms all around the world, regardless of religion, culture, philosophy or spiritual belief. Even my atheist friends believe there is something to prayer and what it does for the human psyche, even if only as a form of collective consciousness.

As a student of world religions, the idea that a negative frame of mind can undo the power of prayer is definitely striking to me.

My belief in the power of prayer is strong, even though most people don’t think of me as religious. It’s saved my life too many times to doubt it. And I believe in a Creator behind that power. Even now, with everything John and I face, I still believe.

But why pray for others?

Depending on how tough things are, it can be hard to stay encouraged. And stay positive.

Frankly, many of my prayers in recent months have even been angry. If the outcome of my prayers had to rely entirely upon my personal attitude, I wouldn’t get far.

The prayers of others help lift us when we struggle on our own.

Herein lies the secret I think.

I especially understand this with everything my husband is going through today. Staying positive about a terminal illness is incredibly difficult. So if a negative outlook can undo the power of Prayer, then what are we to do when we become discouraged? How do we manage “mind over matter” when our brain has been damaged? What are we to do in the face of great adversity?

Why bother to pray if what’s supposed to give us comfort and connect us to the Divine will simply be erased should our emotions get the better of us?

This is where the prayers of others are so important. We’re not attached to the trials we don’t experience. When we pray for each other, our faith that our prayers matter is not darkened by our own trials and discouragement.

The act of prayer is an exchange of energy. Collective prayer adds to the energy given.

When we are down, when were discouraged, when we’re afraid, when our faith falters – the love, encouragement and prayers of others can help bridge the gap and keep our batteries going.

No man is an island.

Humanity has always been social by nature and has never thrived on solitude.

We’re always better when we share our burdens and come together.

A single candle lights and even rekindles many others.

Thanks everyone for keeping mine lit.

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Filed under Editorial, NaBloPoMo, Writing

Tagged as brain cancer, prayer

November 26, 2016 · 12:06 pm

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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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

Tagged as brain cancer, Glioblastoma

November 1, 2016 · 11:47 am

It Begins…

It’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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The Things You Dream When Your Husband Is Fighting Glioblastoma

Go Grey In May - Glioblastoma Brain Cancer Awareness Graphic by Aberrant Crochet A 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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