5 year Anniversary!!

Remember the yesterdays

Plan your tomorrows

And Celebrate your TODAY!

Psalm 30:2 “O Lord my God, I called to you for help and you healed me.”

This is my third attempt on paper and fiftieth mentally at writing this blog post.  What to say, what to say….  I am fortunate to have had my brain tumor and learn from that experience and I have grown from it.  I’m still working on writing a book that will likely shock and entertain many that know me well.  I am so very thankful for my life.  I consider myself one of the luckiest women, EVER.  I think God chose me, for this special experience in life.  He chose me to walk a path that has not been easy every day, and he’s not finished with me yet.  I am celebrating life today, 5 years out from major brain surgery.  I’m celebrating that I’m not laid up in some hospital wondering which family member is watching my kids and if I’m going to be able to take them to school the following year.   I am so           

 b l e s s e d. 

Update on health stuff:  the tumor is still present, although small now.  It is in the bony matter of my brain.  It’s in the part that cradles the optic nerve.  Two years ago, there was some growth and Cyber knife radiation was performed.  I did NOT do well with that.  I had a Severe allergic reaction and was in neuro icu for several weeks.  It has permanently affected my frontal lobes, which affects Everything in life(that’s just awesome)!  I recovered some from the radiation, but a recovery to pre-radiation status is not in the cards.  My brain is swollen.  Period.  End of story.  The radiation may have been successful in shrinking the tumor or at least stopping the growth.  Time will tell for sure.  It takes 4-5 years to know.  For now, we continue to scan via mri every 6 months and monitor the tumor and swelling.  Overall, I feel well.  I work, I run, I care for my kids.  Rex and I have date nights.  We have a very full life!  I am one of the luckiest women on the earth.  The Lord has blessed me richly with friends, life, children, the best mother, and an awesome husband, Rex.  

And here’s a blurb from a piece of the writing I’ve been working on, with the very talented Priscilla Tallman providing editorial services.

Men In Blue

Two men dressed in blue attire and wearing warm smiles put me on the stretcher. I was instantly put on bed rest. Complete bed rest. The kind that comes with a bed pan bed rest. If I need to use the restroom from this point forward it will be in a bean shaped, mauve colored mini-potty. Seriously, it was more effort to maneuver myself to “go” on that thing than if I had calmly walked myself to the restroom. But, whatever, doctor’s orders I guess. They impressed upon me that with a mass that size on my brain any physical exertion could bring on a stroke. In fact, they could not believe that I hadn’t had a stroke already. Be calm and stay put. In the bed. Bed rest.

For now, I rested on the stretcher and my two friendly EMT’s wheeled me through the winding hospital doors to the ambulance. They opened the back doors and popped me into the rear cabin of the truck like a good little patient. There’s only one gigantic problem. I don’t do back seats. My husband knows this, my family knows this – my body definitely knows this. I know what you are thinking, what kind of person is concerned with tossing their cookies on their way to brain surgery? Well, I was and I had enough experience with car sickness that I just wanted to be comfortable on the ride to my next stop. I basically told the driver about my seating arrangement. One of the other men dressed in blue kindly offered me an anti-nausea medication to satisfy my request because apparently I only had about a snowball’s chance of getting in the front seat of this emergency vehicle. I refused the medication and politely informed “other guy” that although it may relieve the nausea of many people, I have not had similar results and in fact took it during much of my second pregnancy and it barely took the edge off…then I promptly rolled my eyes and began scheming a plan to ride shotgun.

I Call Front Seat!

“I’ll just sit up front,” I said. “Yes, that will work best” I stated with the confidence of a woman determined not to lose her lunch (or whatever meal I had last) all over my new friends or my new emergency wheels. My ambulance buddies almost had a heart attack at the thought of this actually happening. The other man in blue exclaimed “that’s against the law!” But I would really feel best if I could ride up front. Both guys in blue struggled for a moment. The truck was silent as they stared at one another in shock. I could see their minds teetering back and forth on whether or not to let me ride shotgun and finally, they relented and we negotiated a deal. We would leave the hospital driveway with me in the back and when we were out of range, we would pull over and as quickly as everyone could move they would unhook my monitors for a nanosecond and then Rex and I would switch places. Ready, set…GO!

We drove away from the hospital and once we were safely out of range, the ambulance and pulled into a lowly lit convenience store parking lot. My friends in blue disconnected me from my monitors and at that instant the plan we had cooked up just moments before was in motion. Rex jumped out of the front seat and into the back of the truck. I shimmied my way – don’t forget I was in a backless hospital gown – to the front seat without anyone seeing me or my backside. The whole seat change took only a few seconds and I was a much happier camper up front. I was extremely grateful for this victory. Although it was a small one, at least I felt as though I still had some control over where my world was going, even if it only seemed that way. My guess is that my friends in blue knew how grim my diagnosis was so they figured “what the heck?” let her be comfortable on the ride to the next stop.

My family who had been on pins and needles since the first phone calls, was following close behind during the seat changing ordeal and later confided to me that they were frightened when they saw the ambulance pull abruptly into an empty parking lot but soon realized that “of course, Chrissy needs to sit up front.”

Just as we were merging onto the freeway, my high school friend Nimisha called to see what was going on. I had called her in a frantic panic a few hours earlier for words of wisdom. Nimisha is a Pediatric Nephrologist and she was just landing in Los Angeles after spending a week on the East Coast for a medical conference. She asked what was going on and I told her that I didn’t really know but that I was on my way to the Barrow’s Institute. “What’s the name of the hospital? I’ll look it up” she asked. I told her again and then told her everything I had been told to this point. I repeated that I had a large brain mass and they said it wasn’t good. She spoke comforting words about how lots of people live through brain tumors and, in fact, most of them are not terminal. I told her they didn’t tell me what kind mine was. Just then, one of the men in blue handed me a copy of the transfer paper work to read to my friend.

Okay, blah , blah, blah…blah, blah…here it is…

Large mass behind right eye, looks to be glioblastoma multiforme. You know that silence you have when you are watching World News and you are seeing something horrific unfold right before your very eyes? That is the silence Nim had after she let out a small gasp that could only mean something very terrible. I knew it was bad. I just knew. Nimisha is one of the kindest, compassionate and encouraging people I have known in my years. She is always gentle and kind in her words and although she tried to conceal the severity of it (which she did to some degree), she still was the bearer of some difficult words. “That was one of the two that I was hoping you wouldn’t say, but you’ll be okay. You will make it, you’re strong. I’ll look up the hospital you are going to and see what they have to offer. We’ll talk soon,” and that was that.

I gave the papers back to my driver friend and we sat in relative quietness until it was time to stop again and return me to the back of the truck prior to our arrival at the hospital.

What was unclear to me at the time, but soon came into view was that Glioblastoma Multiforme, or GBM, is one of the most common and deadliest of malignant brain tumors. Classified as a Grade IV (most serious) astrocytoma, GBM develops from the lineage of star-shaped glial cells, called astrocytes - astrocytes support nerve cells. GBM develops primarily in the cerebral hemisphere but can develop in other parts of the brain, brainstem, or spinal cord. Mine was on the frontal lobe (where specifically on your brain did it develop).

We pulled into the half circle drive for ambulance arrivals and my ambulance driver friends wheeled me through the hospital and into the elevator where I would soon learn that when you are faced with death, an f-bomb delivered by an ambulance driver can be extremely encouraging. “Stay strong” said the tattooed ambulance driver. “You can beat it. Don’t give up. You can do it!” He said and then followed those statements with expletive after expletive of how I was going to kick the posterior side of this glioblastoma. And although I am a God-fearing, bible reading, hallelujah shouting woman of God, when God chooses to use people, he will use a tattooed, f-bomb dropping ambulance driver if need be. I will never forget the words that man delivered so passionately to me in that elevator. It is exactly what I needed at that moment.

COLD

We arrived to the floor where I would spend the next few days. The big steel doors opened, ushering us through the winding hallway of the ICU neurosurgical floor. It was quiet. It was cold. It was scary. The people I passed on the way to my room were sick. So sick. It looked and smelled like death everywhere. It sort of reminded me of an old war movie where there are lots of injured soldiers lying in rows of beds, their faces stricken with despair and hopelessness. I look among the sea of faces and lock eyes with a man, likely in his eighties, on a breathing machine and staples across his forehead. I feel like I need to gasp or come up for air. My lungs struggle for breath. Cold breath. And before I can breathe in the cold air, the moment is gone. This is not a place for sight-seeing or taking in scenery, no matter how horrific. They need to get me to my room, so onward we go.

Once I am in my room, my ambulance friends lift me onto my new bed. I get re-read the rules of my bed-rest and reminded of how to use the bedpan. The drivers and I nod to one another and give a knowing smile as we mentally recount the switch-o change-o that just went down in the parking lot of a Subway restaurant fifteen miles back. I giggle just a little when I think of the fit the ER doctor who gave me the bed rest orders probably would have had to know what we had just done.

The room is cold and clean and state of the art. I mean this place is high-tech. If any of those people back on the hall can be saved, then this is definitely the place for it to happen.

 

And this is where my miracle really gets good.  I go in for surgery, and the prognosis ends up being a meningioma, instead of a GBM!  Hallelujah!  The Lord spared me!  I’m given time on earth to raise my children, my precious Logan and lovely Tuesday who were then 5 and 2 years old.  I’m given a second chance at health and life and marriage.  In the blink of an eye, I had lost my health and regained it.  I’m a lucky gal, and I now know what it’s like to “Live like you’re dying.”  The doctors were wrong, and I’ll take it! I’m here now and thriving 5 years later.   May I challenge you to live life like you’re dying?  What would you do different today if someone told you you had 2-5 months?  It could happen to you….