The Beginning of Glioblastoma

December 15, 2019

The Beginning of Glioblastoma

I don’t know how I got him to pose for this picture - but it’s a favorite of mine. Usually Lee would never have posed for a silly picture. I just had done this pose and asked him to copy me. And he did! Was this goofiness a sign of something I should have noticed? No, I guess not. He was on vacation and loving it!

Two months later we found the rug pulled out from our feet. Lee worked out of town and Sunday he was fine. I spoke to him Wednesday night and things were “off.” He was having headaches and he was sounding confused. Friday I convinced him to go to the doctor once back in town and he missed the appointment so we drove to ER. That’s when they found the tumor and life changed.

Two days later he had a craniotomy and was soon diagnosed with stage 4 Glioblastoma Multiforme brain cancer. I remember the night of his surgery. The doctor told us he had 50% chance that he could have paralysis. I didn’t know if Lee would ever be the same again. But God cared for him. Doctors did their best work. Lee was able to walk out two days later.

I decided to begin this blog to try to help others like me searching for information. With this diagnosis, I immediately scoured the Internet for information. For the past few months, I have wracked my brain trying to find out how to BEST help my husband.

My love.

My best friend.

My spiritual helpmate.

There’s a LOT of info out there. Information overload. I’m adding to it, I guess. But hopefully it can help at least one person.

One thing I do want to share is that I am full of love, joy, and hope despite the prognosis. That’s because my faith is in God who loves Lee and me. His work is for GOOD. And although GBM may not feel good and it is an ugly disease, we live to glorify God.

Without getting “preachy” how do I live with joy?

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. - Philippians 4:8

A cheerful heart is good medicine, but a crushed spirit dries up the bones. - Proverbs 17:22

I know, it’s hard to be cheerful when life hands you GBM. Here is what I do...I work on GRATITUDE.

Here’s an example. Yesterday I went out on a run (hint: exercise can help!!) and I was filled with praise and joy. All I focused on was everything I had...Right. Now. During. This. Second. I had a beautiful running trail, clouds, trees, leaves, green... a husband that can walk, talk, and drive...a warm house with a fireplace, family, coffee, dogs, music...

Fill your mind with what you can be thankful for this...Moment. This. Second. Even if it is small.

It may be - I have comfy shoes on. I have milk in the fridge. It doesn’t matter. Just find something to be thankful for.

What I have found is that those that are dealing with sadness or depression are either mourning the past, mourning the future, or mourning themselves. (Why MY family? Why do I have to deal with this?) Try not to let your mind go there. It just won’t make you feel better! It’s easy for me to worry about the future and all the “what-ifs.” But when I do this, I can feel myself sinking deeper and deeper. It’s just ugly. When I focus my attention on others and things I am THANKFUL for right now, it really helps.

TIME TABLE

August 29: Emergency Room Visit

August 30: Transferred to Mercy San Juan

September 1: Craniotomy - right frontal lobe -

September 3: Released to return home

September 5: Lab work reveals Glioblastoma Multiforme Stage 4

October 2: Lee begins standard of care - Temador and Radiation for 30 days

December 2: Follow up MRI at UCSF - no changes noted

December 18: Lee begins standard of care - Double Temador 300 mg 5/23 (5 days on, 23 off)
December 31: Lee begins Optune

July 21: MRI showed new growth

Stopped Optune

August 3: UCSF MRI continued to show more growth

August 4: Second craniotomy UCSF

August 6: released from hospital

August 23: sent Optune back

August 22: wrote appeal to Carpenters for claim denied

Nov 6: brain hemorrhage - first UC Davis then UCSF

Nov 17: MRI more growth

Dec 8: Pembra surgery and clinical trial

January 17: Avastin infusion

January 20: Hospice, no more clinical trial

March 13: Lee stopped eating and drinking

We met with Nutritional Solutions before Lee’s first radiation visit and the information was invaluable! https://www.nutritional-solutions.net/ We worked with Michelle Gerencser and she evaluated Lee’s blood work to recommend diet and supplements to help with radiation. We loved all the information we received!

We then decided to move to http://www.patricesurley.com/services. Patrice was also very helpful in helping us decide what supplements to continue and discontinue as we move on to chemotherapy.

Either way, I recommend hiring a nutritional consultant if you can. I will list what Lee currently takes but please realize that your own plan may look very different and you may want to get the advice based on your own blood work.

Boswellia 4200 mg daily

Berberine 1x

Digestive Enzymes Ultra with Betaine HCI by Pure Encapsulations 3x

ADK by DaVinci 1x

Black Seed Oil 2x

Liverwell 1x

Curcumin 2x

Vital Zymes Complete 3x

Lion’s Mane 1x

Shark Liver Oil 1x (3 during radiation)

Whey Protein

(We use Naked Whey)