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Linda Fuchser - CCM 1 Mutation

"Make it a great day or mGrByd"

 

I borrowed this line from a Sugarland song back in 2005 "I believe that happiness is something we create." So true isn't it? That would be why you will usually catch an email with "make it a great day" or “mGrByd” as the closing line.

Welcome. I am writing to spare myself and family from the CaringBridge thing. Although I feel CaringBridge is great, it's just not me, and I'd like to keep u-all up to date on the happenings of something extremely exciting. I have been chosen for a clinical trial and leave in just a few short weeks to Albuquerque New Mexico. This has been my life the past seven years.

It was November 1, 2004 Mission Hospital, I was diagnosed with a Cavernous Angioma after falling just two days prior. The back of my head took the brunt of the fall, and it was hard for the radiologist to tell if the bleeding was coming from the tumor (WHAT?) or the fall. More testing was needed for the next couple of days and weeks. Medicine calls these situations "incidental findings." I call it God. This was the first time I had ever heard of this disease, glued to the computer I found Angioma Alliance and started collecting valuable information.

Cavernous Angiomas are basically described as raspberry-like lesions/clusters that grow in the brain and spinal cord. These lesions vary in size and cause symptoms including seizures, stroke symptoms, hemorrhages, and headaches. My angioma was right temporal lobe and I was told by the Dr's to sit, wait and watch until it became unbearable and or bleed/hemorrhaged. Sit and wait? BTW this three year plan was ridiculously out of control. However what I learned during this time was a great trade, "Be still and know I have a plan for you." I didn't like this diagnoses and the challenges I was being faced with, but I learned to trust God because He knew.

Won't really bore you with the strange things I was beginning to do by 2007 (I call this other side of me my Evil twin). Deciding the time was right and the pain unbearable, bleeding frequently, UCLA was my home for a solid, long week in March. I woke from surgery pretty much me on the outside and Dr. Frazee was so awesome not to have shaved my head. However let me tell you I could not wash my hair for a month and brushing it...OMGsh. Next time...shave it!

The days following surgery the Dr's and nurses at UCLA asked me so many questions every hour on the hour. I dreaded it! The one I remember being most difficult to answer was “who was the president” (panic). Silly as it sounds I didn't know but I wanted to say Lincoln. WOW! I came home with a walker, greasy hair, alive, well for the most part and Lincoln was not the president, Bush was. Don't ask me if it was Sr or Jr lol.

June just three months later I went to see Gwen Stefani with my girls at Verizon Amphitheater. I know, I know not such a good idea with the noise, flashing lights and lets not forget her opening act Lady Sovereign. Should be a no brainer the following day would land me back at UCLA under the MRI. Mild stroke and another Cavernous Angioma was the diagnoses that day. This time it was in my brainstem. Inoperable! Oh yeah did I forget to mention there is a hereditary form of this illness? Goes something like back in the 1590’s when the Spanish came to America during the Conquistador time line. The Spanish hooked up with the Mexicans and viola. Serious I am not joking!

After forming three by 2009 I was able to undergo genetic testing. It was explained to me to find this CCM1 mutation (common Hispanic) would be like looking for a misspelled word in a three million word novel. My test came back positive and now I had to stop and think, my three children have a 50/50 chance. God "seriously" more importantly on bended knee "please, please not my girls." So what this means is my mom and sister's too have a 50/50 chance of having this illness. As I sit here writing I am realizing what this must mean for my mother to have a daughter who is ill with a rare illness and no known cure as of yet. She has now been fronted with the thought of herself, two other daughters and five grandchildren with a 50/50 chance.

My daughter Alyssa has had the genetic testing done and she does not carry the illness. She will not have to worry nor do her children or her children’s children. Done finished! Praise God.

Hannah my third daughter has had an MRI that was clear not meaning she is free and clear, that can only be determined by a blood test. She will do the blood once she is eighteen.

Jenna my oldest daughter is newly married with plans to move to London by mid June of this year. With a diagnosis like this there really is no right or wrong way to handle this kind of news. It's simply is an individual choice. For now she does not want to know.

Eric has a great line he uses “either get busy living or get busy dying. Get busy living, Linda (aka Maria Conchita Conswella). Why don't you take your paddle board out to the harbor it's a beautiful day?".......Don't let it get away:)

My last MRI was March 2011 my brainstem lesion is at 8mm and stable praise God. Let me just give you some perspective on what that means; the smallest of intrusions in the brainstem can result in significant, and potentially life-threatening, symptoms. The nerves that transverse throughout the brainstem control basic, involuntary functions such as respiration, gag reflex, heartbeat regulation, body temperature, pain and heat sensation, hiccuping as well as other voluntary functions including eye movement, swallowing facial muscle control, walking and speech. In a nutshell, the functionality of almost every critical system in my entire body. UCLA tells me "I will not find a neurosurgeon anywhere that will do surgery to my brainstem. This tumor/lesion lies deep within the brainstem near the facial nerve nucleus and the risk of surgery is fairly high as far as neurological deficits go." My brain will also continue to produce more with now a total of four lesions, and my symptoms are; word searching, stuttering, weakness on my right side, short term memory problems, swallowing difficulties, migraines, and awful nightmares.

This year celebrating five years since brain surgery I received an email from Dr. Leslie Morrison at University New Mexico to be involved in a five year study. During this time I will have to travel to New Mexico (and I thought UCLA/Santa Monica was far) for MRI, blood test, evaluations by the team of Neurologist followed by phone check-in's. Dr Morrison also sits on the Angioma Alliance Scientific Advisory Board, and I am super excited to be a part in this study. I feel at this time without a yet known cure it is time to encourage research, provide support, more importantly raise awareness. Lets find a cure, let there be a day when surgery is not the only option. Any brain surgery can leave you with a number of neurological deficits, let me tell you it has been no cake walk.

I will be in New Mexico June 22-28. My testing will be on Monday the 25. Please keep us in prayer. During my first surgery I depended on the strength I found in Matthew 18:20; for where two or three are gathered together in my name, I am there in the midst of them. I felt prayer all around me and still five years later have saved messages on my phone that mean so much to me. Thank you for that. This is pretty scary I won't lie, my prayer is that each of my lesions have remained stable. A prayer for my mother???(tear) I wish we could just wake up and this all have been a bad nightmare. However I know we were fearfully and wonderfully made and I trust God has a plan for us. I'm being called to New Mexico were the majority of this illness resides. Humm...What might God be up to?

In closing I'd like to thank you for taking the time to read my story “Make it a great day or mGrByd” 

"You are my praise, and You are my God, you have done for me these great and awesome things which my eyes have seen." Deuteronomy 10:21