The Whole Story

I'm back in treatment. July 2016 was a blur of recurring symptoms, doctor visits, tests and more treatments. I'm back on chemo, now on Avastin and I don't know for how long. As long as it takes.

I'm grateful for an amazing team of family, friends and doctors. I am doing well. 

The whole story, I will write it because God deserves all the glory. For now, know He's a good, good Father, it's who he is and I'm loved by him, it's who I am. 

Peace.

https://m.youtube.com/watch?v=CqybaIesbuA

Zambian Brain Bug

During a recent visit to one of the myriad of doctors we've seen, the question was raised by my sister. "Could you have gotten something in Zambia?"

Everything was coming back negative, so this sparked an idea. I went to the CDC's website, typed in Zambian dirt parasites and the response was overwhelming. My trip to Zambia in 2013 was a very intense, personal trip. I was with the people in a small group. Holding sick babies, playing with children in their villages, walking in soft dirt with shoes and without, and enjoying the experience.

And in that dirt are thousands of parasites and bacteria and I think I brought one home. It just took a while for it to rock my world. Looking back, I see symptoms now easily attributed to stress. Hindsight is alway 20/20.

So last Friday, they took vials of blood for a test called a NMO AB looking for just this, the brain bug. It was sent off and we're awaiting the results. I will have a biopsy on Friday for a small sample of brain tissue as this is the last piece of the puzzle. 

What started on September 30th and has kept me on hold since then, has been the most amazing journey with God, my family, my friends, my church and my community.

I have learned so much, I'm grateful for so much.

From day one, I've said God's got this! He was not surprised on September 30 and I believe Jeremiah 29:11-14 has been my life verse for a reason. 

This story will continue to unfold and I'll continue to tell it. God gets all the glory and has done nothing but been to be good to me, even when all I could say was "It is well with my soul."

peace.

Best News Ever!

Lots of news about Me! Wednesday, November 5th at 8:00 am, I have an appointment with a neurologist to explain tests results and future plans. The tests are complete, they will share those results and the wait is over.

The neurosurgeon's words to me were "This is the best possible scenario. You will live a long, happy life. I couldn't be more pleased!"

When we know details after Wednesday, we'll tell you. Until then, my meds will remain unchanged so roids rule and let's continue to keep me calm. 

Just wanted to share the miracle God has given our family!

Thank you for your continued support but God has always had this and it is well with our souls.

News of Glynis

Hello all, it's Jenny, Glynis' sister,

Thank you for your continuing prayers and support.  Tuesday we went to the pyramid! This building is also known as the NeuroScience Institute at Mercy.  We met with a very knowledgeable and patient duo of Neurosurgeons, Dr. White and his PA Mathew Bertus.  

Our initial 30 minute appointment became a 3 hour appointment when Dr. White understood Glynis’ desire to be proactive.  

As you may be aware, a diagnosis has still not been determined even after an emergency room visit, an overnight hospital stay, multiple CT and MRI scans and many assessments.  Dr. White performed a spinal tap and additional blood was drawn for a comparative workup.  

We are on a positive, proactive path in hopes of obtaining answers and creating a treatment plan, if needed.  Today we know that the right side of the brain in the initial MRI was so swollen it had pushed the left side past the midline and it could not be seen well. With steroid treatment, the swelling has been reduced over-all and the brain has taken a much more centered place in the cranium and revealed swelling on the left side.

Glynis will remain on steroids, though a much lower dose, since the results from the spinal tap and the blood-work have come back completely clear. Based on those results, on Monday, Glynis will go for another MRI and further steps will be determined at that point. 

Please keep those prayers coming. We are peaceful with the process and thankful to have skilled, proactive Doctors!

 

Hi!  It’s Glynis' turn.  

What I am sharing with you today is the most personal part of me and most important to my continued well-being.  

The easiest and best way for me to keep you updated on my health is through my blog, gr8fulg.blogspot.com.

I will update the information on this site as we have news to share.I will post to social media and I will email the link to several groups and the many individuals who are actively supporting us and have contacted me for an update.

I have been overwhelmed by the outpouring of support and I wish to keep you all well informed, however, the current medication regimen has reduced my stamina tremendously.  

Though I appreciate you all, I don’t have the ability to communicate with each of you individually.  I have a small, intimate group, like my daughters, who have unfettered access to me and will be the only ones I will be personally in contact with. Thank you for allowing me to communicate through this media.  I look forward to speaking with each of you when time and energy permit.  Until then, my blog will keep you all fully informed.

 

Thank you again.  I do love you all!   God’s got this and it is well with my soul.

 

Glynis

Best Day Ever in Chicago!

Dv

So to our new friend Acie Boyd, I just wanted you to know the rest of the story of your beer lovin' bald guy Jim and our lunch on Saturday. 

This year began with Jim losing his job, starting his own company, finishing his BA degree, me losing my job, btw I'm Glynis, the bald guy's wife of 30 years. He now works two weeks a month in Madison, two weeks a month in OK. It's been a year of change and challenge. And two weeks ago, they found swelling in my brain on the right side. The docs don't know why, lots of unanswered questions, lots of wondering. We will find out more this week with Jim in Madison and me in OK. 

 But I had this trip scheduled to Madison to see our daughter and son-in-law before this all happened and the doctor said it was ok as long as I took someone with me. My sister could come with, so we came. 

My sister, Jenny, in the last two years, has lost a 19 year old niece to melanoma, her father-in-law has just recently rung the clear bell on his leukemia, had a God-child killed in a car accident, her son recently deployed with the Air Force after getting married, and her mother-in-law was diagnosed with stage 4 cancer just a couple of weeks ago. And she is always the support and caretaker. She is an angel. And I felt like this trip was just a small break, a gift to her who has been such a caretaker to all those around her. And the bald guy agreed.

I could not have come without her. 

So we find ourself on the Navy Pier, we wanted to ride the architectural boat tour and we needed lunch.  We come to Riva's and we're seated. We're rowdy Oklahomans and our waiter isn't quite sure of us, but you were obviously game for an adventure. And you made a celebration out of everything. You didn't know, you just did your job. You joked with my bald guy, you talked beer and scotch. You got us a map, helped us find the silver bean. Gave us hints on taxis, talked about special beer cans. You celebrated my sister's 46 birthday with that amazing cake and suggested milk, our favorite! You joked, smiled, played and made this special memory something we will never forget. And you helped melt away all the cares of our day with your care of us.

When you ran downstairs to question if we meant to really leave that tip, I only wish we have done more, and you had tears in your eyes and a hug for my Jim, and you won our hearts.I don't know your story Acie Boyd, but you will be in hearts for ever. Thank you for being you, it touched our lives and I wish you all the best, every day, for all your days. And you danced....

Two weeks

Did you know your life can change on a dime? It can.

Two weeks ago, it did. Read http://gr8fulg.blogspot.com/2014/10/a-new-day.html.

But here's what I know today. Nothing new. 

I do know sodium is bad and makes me crazy. Sugar is bad and makes me crazy. Caffeine is bad and makes me crazy. It's my story, I'm sticking to it. Low fat, lots of vegetables, great proteins, complex carbs do not make me crazy and I feel better behaving. I'm in total control of my yogurt flavors. Period. That's all. And for now, it's pretty cool.

I'm a totally dependent child to a large degree. I can't drive, I can be alone for short whiles, and each day I've been totally overwhelmed by the love of the people I'm surrounded by. Love. Support.  It's a beautiful thing.

My heart breaks for those who don't know it.  From those around them to the God who created them. I pray one moment in time, each will. Fervently.

This "practice" of medicine is weird. It's a wonderful, flimsy, guesstimated thing. I will have an MRI and PetScan at the end of the month. It may show something or may not show anything at all. We'll see. Until then, we wait. I manage and I do not eat caramel macchiato Greek yogurt. You shouldn't either. 

God's got this. Of this I am sure.

Peace.

On Being Good...

So I have to be good for 30 days. I have to rest, I have to take meds, I have to accept help and it's going to be a different kind of journey for me. I'm the helper not the helpee, I'm the big sister, the supporter, the strong one. Rrriiiigggghhhhtttttt. God is. And I'm learning to let go. To trust. To focus on faith and my incredible creator. He is who He says is. And He is for you, too! Submerge yourself in God. Peace.