“So, they got it, right?”

A couple of weeks ago I was asked this question by a well-meaning acquaintance in the grocery store. The question came after I told him Bruce had surgery. I didn’t mention there were two, that twice they’ve cut into my husband’s skull.

He cares. People care. I understand this.

What ISN’T understood is that glioblastoma multiforme (GBM) is unlike other cancers.

  1. with cancers such as breast and prostate, several treatment options are available
  2. funding and research for many other cancers is well-established
  3. for GBM, neither 1. or 2. is true
  4. because of 1. and 2., little is known about GBM
  5. the blood brain barrier (BBB) prevents medication from crossing into the brain, severely limiting treatment
  6. the tumor(s) can be surgically removed (resected), but often some is left behind
  7. for those whose tumors involve too much healthy brain tissue, it is inoperable
  8. even with “gross resectomy,” (when they get >99%), inevitably, cells are left behind
  9. the standard of care (SOC) is surgery (if possible), chemo and radiation
  10. when tumors recur, they come back stronger, more aggressive, less resistant to treatment
  11. such tumors can double in size in weeks
  12. glioblastoma multiforme is almost always a terminal diagnosis
  13. statistics are frightening: the prognosis is 12-18 months
  14. this leaves very little hope, futures irrevocably changed, and families destroyed, meaning…
  15. …the pain is indescribable.
  16. NO ONE knows what to do or say, including us.
  17. The point of this post: To wipe out GBM, awareness and understanding need to increase.
  18. Another: Families need help, compassion, patience, and understanding unlike any we’ve known. 
  19. Another: We do not know how to articulate those needs.
  20. And one more: Profound pain does something to a person; it changes everything.

THIS cancer is unlike any other. THIS cancer destroys.


I posted a question recently in an online, GBM forum. I asked readers if, among family and friends, they notice a general lack of awareness about GBM, and a continual need to explain it and what it does. The response was a resounding yes.

My family may be the exception: we are very familiar with brain cancer. It was the cause of death for Bruce’s uncle in the 50s. Two former (female) co-workers of mine had GBM. A former co-worker of Bruce’s died from GBM several years ago, and, sadly, my best friend’s husband died six years ago from gliomatosis cerebri (a rare form of brain cancer, but the treatment and timeline were much the same). Some families have never heard of GBM until their own diagnosis.

Due to #3 above, there is a continual need explain GBM. Due to #17, while this is painful, frustrating, and exhausting to the family…

I won’t shut up, and

I won’t give up, and

I WILL keep fighting.


I’ve read countless posts in the GBM forums addressing this issue. GBM families all say the same thing: few people appear to understand, either about GBM itself or how to interact with families experiencing this devastating cancer. The question then becomes, “How can we improve understanding?” Those in the thick of it must speak out:

  • I wrote a post a while back about what it’s like to be me after my husband’s GBM diagnosis. Few people know what to do or say or how to act towards us. Twelve days after Bruce’s second surgery, and coming from a place of intense pain, I addressed what is helpful and what is not. I used examples people shared with me, some of my own, some from forums, collectively referred to as “recent interactions.” You can read THAT POST here if you’d like.
  • I discovered a blog written by a woman living with GBM. She recently wrote a post about helpful words that are not helpful, and one about the impact cancer has on a family and relationships. Her posts echo these same issues. No, they nail it. I will be sharing some of LAHLA’S quotes in upcoming posts.
  • When I saw the following article by Donna Freydkin, I had to share. She addresses–precisely and strongly–the issue of helping others understand what is helpful and what is not, and the plight of those fighting GBM.  I urge you to take a few minutes to read her valuable words.

https://www.huffpost.com/entry/i-lost-my-husband-to-the-same-cancer-john-mccain-has_b_597b72bce4b06b305561d02f


The creation of Finding Merle has been a great joy in my life. This space and place has been my only release since diagnosis in October. FM, henceforth, it is my platform. Why? For GBM, there is no cure.

Glioblastoma multiforme needs to be understood so that families are no longer shattered by senseless cancer, so that families and those they love can better deal with this, and to help find a cure. Honey, you’re so very worth it.

hoskins bruce_christmas 2007

In photos the eyes are ALWAYS closed. ❤ 

The answer to the grocery store question: No.


Blessings and thank you for reading. ❤


BTW, who uses words like henceforth?

The glioblastoma wife-5

As with most things in life, we often find good and bad.

Today will be about the good.

When I share my feelings about our new situation, I know it can be hard for you to read.

So many people do not know what to say, and I completely understand. I do.

While we hope to help others by sharing Bruce’s story, writing is also my therapy.

Today’s post will not be difficult to read.

Yesterday, we rode the wave of optimism.

I crashed today, but only due to sheer relief. Emotions are really heavy.

Bruce’s MRI results were wonderful; he had an excellent response to the treatment.

The “tumor bed” where the tumor was located shrank by at least half.

(Hmmmm. Is it shrink, shrank, or shrunk? Shrinked? I had to look it up.)

This means normal, healthy brain tissue can now wiggle its way back to its original position.

There is no more pressure on the brain, and no evidence of a “brain bleed.”

The scan looked “normal.”

There is no evidence of any new growth, or migration of previous spots.

The radiation oncologist (RO) told us about one spot he’s been watching since October.

Since then, the spot grew. It was pretty small before, but on Friday’s MRI, it had grown.

We were prepared for just this phenomenon. The RO called it “pseudo progression.”

This means that the spot grew as a result of the treatment but then died. This is called “radiation necrosis.” Necrosis means tissue death.

I specifically asked him if he was concerned at all about this spot. Without a pause, he said emphatically “no.”

I specifically asked him what dies when they talk about necrosis. He said “tumor.”

We see the neuro oncologist (NO) tomorrow; he’s the doctor in charge of Bruce’s treatment from here on out.

He will likely review the next steps, meaning Phase 3 of treatment. Phase 1 was surgery, radiation and chemo, and Phase 2 was a one month break after treatment stops.


I’m really, really tired.

I am also unbelievably happy.

cropped-mt-henry_photos-from-heidi_july-29-2017.jpg

At the top of Mt. Henry, Montana, summer 2017

Life. Is. Good.


Blessings and thank you for reading. ❤

The glioblastoma wife-3

Last evening I noticed that Bruce’s right pupil was larger than the left.

With a history of A-Fib and two recent brain surgeries, I went on high alert.

With a recent history of chemo, radiation, dexamethasone, Keppra, Mepron, and his regular heart medicine, who knows what is causing what. Just when I have the routine down, the medicine or dose changes.

For the next two hours, my hands shook and my heart rate rose, a lot.

I called both the neurosurgeon (NS) and the neuro oncologist (NO). After the requisite two hours of phone tag, we were told that as long as Bruce had no other symptoms, this was probably not a concern.

I asked both offices, “Do you typically see enlarged pupils with radiation?” Both said no. While necessary to treat cancer of the brain, a host of side effects can arise, long after the treatment stops. It is different for each person.

Bruce did not have a headache, and there is no history of seizures. There was no blurred vision or pain.  He had no other symptoms, and I was told that if there was a new assault or trauma to the brain, there would be a sign.

Conclusion: This was likely radiation induced edema resulting in pressure on the optic nerve. (Isn’t this what I asked?! Never mind; I’ll take it.)

WHEEEEEEEW!!!!!

Late last night, both pupils were the same. I made him promise to wake me during the night if he felt any unusual symptoms.

I took Trazodone before bed.


Early today (at 4:30 a.m.), Bruce got up to head to the pool; both eyes were the same.

When he returned from the pool, they were still the same.

YES, you read that correctly: Bruce went for a swim!

I’d be a rich woman if I had a dollar for every time Bruce asked the nurses or doctors–he probably asked everyone who walked by his room in the hospital–when he could get back to the pool.

IMG_20180520_094910452_HDR

Adair Village, Oregon

Each time I checked his eyes today–he’ll tell you I was “gazing”–the pupils were normal.

He’s been swimming several days a week for the past 35 years; being out of the pool during these past four months has been difficult for him. Today was his first day back.

He has been running errands all day, working, and he seems full of energy.

The pool was a good thing, and reconnecting with the early bird, pool gang.

Today was the first day since September that Bruce was up and able and working most of the day. It’s 3:47, and he just came in. To nap.

I’ll take it.

swimming-in-the-poolBlessings, and thank you for reading. ❤

The glioblastoma wife–2

Two mornings ago, during the wee hours, Bruce noticed a “mushy” area on the top of his head, along the latest scar.

“Radiation induced swelling” is very real, and can express itself in various ways.  Is this one of them? Why one month post-surgery?

Once he got out of bed, the swelling went away. Until the next night and this morning. It is back. And again, it left–once he was up and about.

He sent notice to his oncology care team. They replied that unless it is red or oozing, it’s OK.

He drove us both into town on Thursday.

On Friday, he drove into town by himself and had the tires replaced on the car.

He stopped at Rite-Aid and Wilco.

He picked up Celexa for me. I took the first one yesterday. I am already taking Trazodone but I skipped it last night because my heart began to race, a lot. Trazodone already has this effect. Tonight, no Celexa but yes Trazodone.

I did not sleep well last night.

The rash on my face comes and goes. Some days it is pretty red.

We are on a first name basis with the pharmacists.


Yesterday was a very good day.

My friend and her son–a “charge” of my husband’s when the boys were in scouts and Bruce was the leader–came to visit. The son lives in Costa Rica and had not seen Bruce in a long time. Our families met when our sons were in kindergarten together.

There was laughter. There were hugs.

Bruce’s childhood friend called him last evening. They laughed. It was a good chat.

My cousin sent me a mug that, in part, reads, “Life is good.” She’s right.

family_mug_spBruce is finished with the Mepron. It is the consistency of paint and tastes about as bad. It cost us $399 for a two week dose.

His taste buds are returning. He can now taste blueberries. And scrambled eggs. Those are his favorites.

He no longer needs the cane. His balance issues are gone.

I am learning to breathe.

Some days he’s full of energy. That makes him smile.

Some days he naps, more than once. That makes me smile; his body needs the rest.

We talk. Our eyes lock when we share a smile.

We can face this together.

Nothing else matters. ❤

IMG_20181122_142145054When I asked them to turn around for the photo, three of them turned around.

The sense of humor is intact!

It is indeed a good day to have a good day.

Blessings and thank you for reading. ❤

Perspectives and hope

 In January of 2018, my husband had surgery to remove his cancerous prostate gland. 

In October, he had surgery to remove a brain tumor. The day he was discharged, we received advice from the social worker that stuck with me; I cannot let it go. 

In December, emergency surgery was necessary to relieve pressure on the brain above the previous surgical site; a hematoma had developed. They thought it was a stroke. It wasn’t. 

Chemo and radiation started and stopped, allowing healing time after and between surgeries. He’s had surgery, powerful chemicals, and very high doses of radiation.

This is the standard of care, or SOC, for highly aggressive, grade IV, glioblastoma multiforme. There is no cure, and the SOC usually doesn’t work.

We now wait one month before the next scan. The wait is excruciating.


Advice given the day of discharge was to not read too much on the Internet, that some of the advice out there can lead us astray. They warned us of fad diets, supplements, herbal treatments, and pretty much anything not included on their own “After Visit Summary” instructions.

They advised us to follow the regimen that everyone else follows, the SOC for many, many years, to stick to a particular pathway (regardless of the very poor outcomes). You can guess how well this was received.

While I understand absolutely their intent–there are quacks out there and no doubt plenty of bad advice–I could not get this out of my head. Among the fear, anxiety, horror, and everything else that has irrevocably changed our future, that “advice” has been floating around in my head every single day. It’s pretty hard to come to terms with the fact that we have been instructed to ONLY follow a known path of destruction*. 

Having been in the medical field for many years and from when I worked on my master’s, I am very familiar with learning paradigms. An MD may have different perspectives than a DO, for example. The former may tend to write a prescription a bit sooner whereas the latter may tend to first find the cause of the ailment. Our Radiation Oncologist provided a similar example. In his experience, those newer to the field may call for a scan sooner–with gliomas, there are often false positives on the first MRI after treatment has ended–whereas doctors who have treated many more of these patients tend to base the next step on how the patient feels, rather than a scan.

This matters because every body responds to treatment the way it will respond, not necessarily the way another body under the same conditions might respond.


Over a year ago when cancer first entered our lives, I purchased two books. With respect to cancer, the authors offer another paradigm. They suggest that cancer could and maybe should be looked at as a metabolic disease, one whose outcomes could be affected by non-traditional–yet evidence-based–treatments or pathways.

The cancer-as-a-metabolic-disease idea caught my attention. The authors of the books suggest diet as a way to control our health, specifically cancer, specifically glioblastoma, and specifically following a Keto eating plan. The authors believe a fermentation process is required for cancer cells to grow, and that calorie reduction and the elimination of sugars will starve cancer cells that make up glioblastoma tumors. In addition, being in ketosis along with other therapies boosts healthy cells and does harm to cancer cells. (1) The science is beyond my ability to describe here. However, if a diet change can offer hope, if it means I can do something, anything, to extend the life of my husband, I absolutely will.

According to the readings, people have been positively affected by following the keto diet with respect to cancer. It appears that putting the body in a state of ketosis leads to tumor reduction. We are following the doctors’ advice, but now with a significantly tweaked diet. We have nothing to lose and everything to gain.

Our care team has been fabulous. Our doctors have shown repeatedly that they want the best for us. However, I do not think the stay-away advice was the best. It offers zero hope. Families are hit with a devastating blow and left in the cold with very few options.

A certain diet may work for that one person. Why this is not suggested as a complementary, concomitant treatment to the SOC is not clear to me right now.

The bottom line: if something as simple as changing our eating habits might inhibit tumor growth, I could not live with myself later if I didn’t try. My husband is worth it.


We are not bitter. We have accepted this diagnosis and are doing our best to move forward. We try to find joy in each day, in each other, in our children and our future. We are not delusional to think a diet can cure cancer; we can, however, look ahead with a smidgeon of hope.

It has made all the difference.

Karen-and-Lynne_Happy-New-Year_

My sister and me, back in the day. Photo~Rod Geier

Happy New Year to you. Blessings and thank you for reading. ❤

 

* In the Forward, page viii of the cited book below, it reads, “What is more concerning is that while the current standard of care may increase survival on average by a few months, it actually promotes tumor aggressiveness and metastasis in some cancers.”  The Forward was written by Dominic P. D’Agostino, PhD, Dept. of Molecular Pharmacology and Physiology, Morsani College of Medicine, University of South Florida.

  1. Christofferson, T., Tripping over the truth. White River Junction, VT: Green Publishing, 2017.
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