Wednesday, May 7, 2014

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….    






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Thursday, October 3, 2013

I'm throwing the Bottle away...


I’m throwing the bottle away…..

The bottle of “scrub care” given to me by the hospital when I went in for pre-op months ago.  Initially I kept it because I was waiting for the biopsy surgery to be rescheduled.  And now that there are no plans to reschedule the biopsy I kept it as a reminder of how close I was to having my head drilled into again. 


It was sentimental.  I would look at it on the edge of my bath tub and think of how close I was to the line of brain surgery, and how incredibly blessed I was to have not inched over that line again.  It represents an array of emotions that swing back and forth depending on the day, but all emotions are lined with a huge smile and thankfulness. 

This trip of unwellness has been difficult, and brought many life changes, but it has also reinforced some positive things in life.  My faith has been reinforced in dramatic ways.  My marriage has been strengthened in some very special and personal ways (Rex took care of me for weeks while I was bed-ridden), and my desire to be a good mother to my children has really come alive. 

I am well.  I am not wasting any time on things that are not important (unhealthy relationships & material items).  My relationship with the Lord, raising my children and being a good wife are all at the top of the list.  While I fight to maintain my current health, I am super thankful for another turn on the merry-go-round of life with good health.  And while I’m enjoying my health, I’m throwing away that bottle of “scrub-care” so it is not a nagging reminder of how close I was to surgery.  Here’s to a summer, I mean Fall season of enjoying my family, and our health. 

 
I wrote the above post months and months ago, but I never posted it, because I just wasn’t sure I was well….and I just wasn’t fully recovered from having my ass kicked by radiation.  Well, last month I had a seizure and I’ve had another hiccup with my health, but it has been a short hiccup and I am already feeling well!  I am recovered and am not expected to experience any further seizure activity.  My brain and I are both doing great!  Come on Fall!  I am ready to live!!





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Saturday, May 4, 2013

Four years of thankfulness………


Four years of thankfulness………

·         It’s the amount of years it took me to earn my bachelors degree.

·         It’s 40% of a decade.

·         It’s the amount of time in between each Olympics

·         It happens to be on Cinco de Mayo

·         And Today it is my 4 year Anniversary from my primary brain tumor diagnosis.

 
In a single glance back in history, it seems so close and yet so far away.  I am thrilled to be four years out, celebrating this anniversary.  It is the anniversary that my world stop spinning, had a tune up and began spinning again. 

I was sick, had surgery and made to be better (in so many ways).  This entire process has been such a blessing. 

Even through a blessing- filled persepctive, I am relieved to be four years past that day in my life.   

The surgery really kicked my ass. 

Today I will be celebrating emotionally and spiritually, with my husband and kids.  We are so blessed.

And here’s my throwback picture of what the surgery looked like several hours into recovery.










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Tuesday, April 30, 2013

MS, MALIGNANT TUMOR, EDEMA, SWOLLEN FRONTAL LOBES, CASE STUDY


MS, MALIGNANT TUMOR, EDEMA, SWOLLEN FRONTAL LOBES, CASE STUDY

In one quick trip in the mri machine, life changed, Again.  My mom flew into town and within an hour she “knew something was really wrong with me.”  She suggested Rex take me to the er when he arrived home from work.  Thirty minutes into our er visit, and I was being wheeled to neuro-icu where I would stay for the next 13 days. 

 

I knew I didn’t feel well.  I hadn’t felt well since radiation in July, but the receptionist didn’t seem to care when I called for an appointment with my neuro-surgeon and radiation oncologist.  No apt necessary is what I was told. 

And then a few months went by and I landed in the icu. 

It was a wild ride.  One I’m still on, since full recovery is estimated to be up to a year. 

On the board of 9 specialists, there were 5 differing opinions, none of which were concrete.  The only thing everyone agreed on was that my frontal lobes were excessively swollen, and that whetever was going on, was a reaction to radiation. 

Meanwhile, I’m exhausted, laid up in bed for up to 15 hours a day and saying anything and everything that comes to my mind (because that’s what you do when your frontal lobes are swollen).  Apparently it’s the equivalent to being extremely intoxicated, EXTREMELY.   

And so the tumor board met several times on my case and decided to discharge me after 2 weeks in the icu since they were only observing me.  I was discharged and placed in home health care.   

Home health care provided me an iv pole and 1800 mg of steroids a day.  As if the swollen frontal lobes weren’t enough, we’re going to try high dose steroids too?  Whew, I’m glad to have that behind me. 

A week after the steroids another scan showed the swelling or tumor, or whatever it was, had worsened.

I was scheduled for a brain biopsy.   I completed the pre-op scans and necessary blood work for surgery which was to be the following day.  It was a 4:30 brain biopsy surgery.  At 8:30 the morning of the scheduled surgery my surgeon called with amazing news.  The panels of dr.’s involved felt there was slight improvement and thought it best to postpone the surgery in hopes of healing without an invasive procedure.  Thank the Lord!   I was elated!  I had been spared, at least temporarily, a brain surgery. 

A month later, we would scan and continue to watch for activity.

As the month approached, I went in for the scan with great hope that I was healing.  I was beginning to feel better, hopefully it was because I was actually better.  The scan was still troubling to the tumor board, but there was steady improvement.  No surgery scheduled.  Another scan planned for a month out. 

By the next scan, there was significant improvement!  The specialists on my case reported that “they had never seen anything like this before,” and my neuro-surgeon said “we’ll be studying you in the text books for years to come.  We have no idea what’s going on.” My MS specialist stated that in her entire medical training and practice she had never seen a lesion disappear as mine had.  “Especially one that large”, she said in amazement.  Internally I chuckled, you don’t know my God, I thought. 

 

And so this healing process is estimated to take up to one year.  I am thrilled to report that I am only 6 months into healing and I am feeling pretty dang good.  In fact, I have ran three half marathons in the last three months.  Hooray for feeling better!

I’m still being watched closely, but it appears I am on a strong road to recovery.  
Would appreciate prayer as I continue to scan regularly to monitor this healing process!
 -Chrissy


 

 

 

Tuesday, August 21, 2012

Be Careful How You Interpret the World Part II

“Be careful how you interpret the world: It is like that.” -Erich Heller

When Logan began kindergarten three years ago, I was only weeks out of neuro-surgery. I couldn’t drive him to school. I was puffy from the steroids I was taking, I was tired and my head tingled from all the nerves reconnecting. Despite all of that, I was so happy to be alive and walking him to his first day of school. And time fades all things because I rarely think of them now. What I think of is how amazing it was that I was able to be there for his first day of kindergarten.

Fast forward exactly three years, and now I am recovering once again. I haven’t written because I’m not feeling well. Physically, things have been very up and down since the Cyber-knife treatments. I so badly want to write about how I’m feeling well and that things are going great…but that “feel good” state hasn’t lasted long enough for me to write. So once again, I’m just thankful that I was able to walk my baby girl to her first day of kindergarten.

Headache, exhaustion, hair loss and nausea didn’t matter last Wednesday—all that mattered was that I was here on this earth to take Logan to his first day of third grade and Tuesday to her first day of kindergarten.

They melt my heart! How I love being their momma. When I begin to struggle with the frustrations that I just don’t feel good, I’m trying to cling to the really good things in life. My eternity is secure. My kids laugh. My kids are healthy. Rex and I are in love with one another after 10 years of marriage.


And so, while I’m praying this stint of feeling crappy passes quickly, I’m remembering that even on crappy days, my God loves me and takes care of me, and there are many more things in my life to smile about than cry about.

What about you? What are you smiling about these days?
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Sunday, July 15, 2012

Three Down, Two To Go

My Cyber-knife procedures are 35 minutes each. As it turns out, it is an uncomfortable, somewhat painful experience.

The mask that is covering my face (and anchors me to the metal table that I lie on for the procedure) hurts. It is TIGHT. It leaves impressions on my face when I am done. The first day I was advised not to wear make-up. My tech, Kim, whom I’ve grown fond of, explained that I could, in fact, wear make-up, it just might rub off on the mask. And so the second day, I wore make-up, not realizing that the mask is so stinking tight that I would not be able to open my eyes with the thickness of my lashes with mascara on them. Oh my! That was an entirely new level of anxiety! At least the first day I could see through the tiny white criss-cross holes of the mask to look around when I wanted to.

Upon my arrival at my first procedure, my tech asked for my CD. "CD?" I wondered. "Yeah, that would’ve been a good idea. Tomorrow for sure," I thought. And so, she offered to turn the radio on to the only station they had reception for in the Cyber-Knife room. The station? 70’s rock. Can I throw up already? I was born in the late 70’s, but I was not listening to rock. I asked her to turn it off, but she had already left the room. And so my 35 minutes of pressurized laser beam therapy included Led Zeppelin and The Grateful Dead. Don't get me wrong--it's not that I’m that opposed to the music, you just wouldn't see it on my list of songs for relaxation. Oh well, we had a good laugh when we left the hospital.

Physically, I am tolerating the treatment well. I have been super tired (I took a four-hour nap on the first day), have had a light headache, minor nausea (that goes away a little after eating) and occasional burning in my eye. Nothing I can’t live with.

As the treatments progress, side-effects can be more prominent. So, as usual, I’m going to ask you for prayer that the last two treatments would be flawless, and effective. I go in at 10:30 on Monday and 8:30 on Tuesday. I will update more as the treatment ends. Your love, prayer, concern, and care has been amazing this week. I have been blessed with special people in my life. I thank the Lord for you often!

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Tuesday, July 10, 2012

Cyberknife Tomorrow


“Talking to men for God is a great thing,
but talking to God for men is greater still." E.M. Bounds

Ecclesiastes 4:9-10 NIV
"Two are better than one, because they have a good return for their work; If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!"
As I travel this path of conquering a brain tumor, I am thankful for my friends in life.  From those friends of my early childhood to those I have recently gained, I have been tremendously blessed by love and encouragement, and cared for in many ways on my journey.  This process is enriched because of you.  Thank you.
It is the eve of my first cyber-knife appointment. As it turns out, once again, ignoring the obvious has not made it go away.  Pushing thoughts of this procedure out of my mind every time it crept in has not made my tumor go away.  Oh, well.  I am fine.  I am good. But I am also unsettled. 
I could go on and on, writing about all the ups and downs, but that is not going to improve my day or yours. I do know that there is power in prayer.  And so today, I am asking, again….will you pray for me?

For the radiation oncologist, the neuro-surgeon and their team that is overseeing my procedure tomorrow and the following days. Will you pray for their wisdom?  That their calculations of areas to be radiated would be exact and that not a single cell outside of the necessary area would be harmed, and that my vision would be preserved.

Would you pray that I would tolerate the treatment well?  That side effects would be minimal and that swelling of the brain would not be problematic (I do not want to go on steroids!!!). And lastly, would you pray that this treatment would be effective?  I mean fully effective and that this tumor would die once and for all!  Thank you.  Thank you so much.
I am scheduled for an 8:30am check-in tomorrow in downtown Phoenix at the Barrows.  Once the procedure is underway, it will be 30 minutes to an hour of treatment.  I will not know the exact length of treatment until I arrive tomorrow. 
One last prayer request, one that I write with a tinge of reluctance.  Will you please lift up my emotional well-being?  All the positive statistics in the world cannot settle my heart or change the raw fact that I am having what is referred to as a “bloodless brain surgery” tomorrow.  Here's a picture of the machine. As you can see, it's a pretty big deal.


My mind wanders, a lot…my baby girl isn’t even in kindergarten yet, I am only 33, what if this isn’t effective and they have to do neuro-surgery again, how could a laser be that precise…? and on and on it runs.
Would you pray that I would be calm tomorrow?  That the Lord would settle my soul in a way that only He can and that I would remember and be comforted by the truth: that my times are in His hands. 
I thank you.  From deep within I am overwhelmingly grateful for the love and encouragement you have all brought to me through this process. 

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