“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.

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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.

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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

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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.

The answer to the grocery store question: No.

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Blessings and thank you for reading. ❤

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BTW, who uses words like henceforth?