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