Kevin’s Story

Site created on May 31, 2008

5/5/08, golf ball sized tumor found.  6/2/08, golf ball to tennis ball sized tumor, and surgery. Diagnosed with a stage 3 cancerous tumor.  Oligodondroglioma.  Less than a month later, 7 weeks of radiation while starting Chemotherapy.  12 months of Chemo.

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5/13/08

So last monday night 5/5/08 I had a seizure. No warning signs, no headaches, no problems, and no head hits or injuries. I was taken to Dupont hospital where they hooked up an IV and did a head CAT scan to reveal something abnormal in my brain. So the following day i went to Luthern hospital to get an MRI scan, (basically a closer look at what it is) and another IV. Come to find out I have a brain tumor about the size of a golf ball.. Yea your about as surprised as i was. I had no clue..

The golf ball sized tumor is on the top left lobe of my brain. Its so close to the part of my brain that controls memory, speech, and movement to the right side of my body that 'awake surgery' will be required. Where most of the surgery i will be awake so they can ask me questions and make me move things so honestly they dont mess anything up in the operation. Ill have to shave my head and im sure by the end ill have some nice staples in there too. Full recovery time is in the weeks or even months. I cant drive, i cant ride my motorcycle, i cant go to tae kwon do, i cant drink alcohol, and i had to postpone guitar lessons indeffinitely. One millimetre slip in this surgery and ill be in a wheelchair for life..

If anyone reading this actually knows me, you know my life and how strong a person i am. I snowboard, i rollerblade, i jump out of planes, i will be there for any friend at the drop of a hat.. I travel, i have seen some of the best sunsets and clearest waters on the whitest beaches. I never break a promise. I have never been scared of anything, ever. Carpe diem and no regrets is how i have lived up to this point. You always read those sayings, live everyday like its your last...but you will never actually understand till your in that situation. Its like you have lived your entire life looking through a magnifying glass picking out everything that you didnt like and dwelling on it..and when your presented with this, you zoom back out to see whats really important. If you could see a huge turning point in your life coming, would you want to know about it?

5/21/08

I have a grade 3 Glioma tumor. Look it up here: http://en.wikipedia.org/wiki/Glioma (http://en.wikipedia.org/wiki/Glioma)

Not meaning to scare people but its graded on a 1 out of 4 scale. Grade 4 usually only live another 12 months..if your lucky up to 3 years. Im a 3. I have an option to make.. The more aggressive approach he takes with the surgery is the more of the tumor that will be taken out. Unfortunately where he is operating their main concern is that this is the area that tells the part of my brain controlling my right leg and parts of my right side how to move. So the more of the tumor he takes out the higher the chance of risk for more damage if not even permanent damage. The chance of permanent damage and my right leg no longer working properly is 15%.

My best way of helping you visualize it: You have a bucket of black paint..and you drop in a golf ball sized glob of red paint (my tumor)...then swirl it. They are going to try to get as much of the red out as possible..but as they start working on the smaller swirls on the outside there is a chance that they might damage or take out some of the black paint with it. (Parts of non infected good brain)

Also because of my age Dr Meyers my surgeon recommends the more aggressive surgery. The more aggressive the surgery the more 'beat up' ill be after the surgery. Not so much movement in the right side of my body or maybe loss of speech for a while. But this part of my brain just needs to create new connections on how to make my parts move, not the fact that they are incapable of moving.

So clean cut its like this: Be more aggressive and take out as much of the tumor now and have a longer re-hab time to get back to normal or leave more tumor and have a shorter life span.

Yep your choice is the same as mine. Get as much of it out as possible. There will be risks. And possibly a solid month of physical rehab depending how well the surgery goes. The surgery is out of my hands, but re-hab, i will work stronger and faster than anyone. I should be able to come back to a full recovery and return to tae kwon do and everything else i love within 6 months. (thats what they think...im going to try to cut all recovery times in half)

Surgery will take up to 4 hours. I will be in intensive care unit (ICU) over night and have the bandages off by morning. I should only have to be in the hospital for 3-5 days. The rest is recouperation and rehab. ..Thats if all goes well.

I appreciate every prayer, every good luck, and all happy thoughts. Thanks to everyone who has been there for me so far.

Newest Update

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Journal entry by Kevin Sanders —

I wanted to thank everyone for following me as I went through my tough times battling Brain Cancer. Today marks 5 years since I was first diagnosed and am pleased to say I will be doing a 1300 mi bicycle ride from Bar Harbor, Maine back to my hometown in Fort Wayne, IN.  Alone.  I'll be leaving July 4th and it should take about 4 weeks.  This trip is to raise awareness for Cancer Survivors and will be raising support.   I made a Facebook page and plan to update it as the time comes closer.  There is hope after Cancer!

Thank you all again for standing by my side and supporting me.  

https://www.facebook.com/TheHopeRide

My bio is below:

Everyone has a story, and this is my incredible journey… 

My name is Kevin Sanders & I’m 31 years old.  On May 5, 2008 I was diagnosed with a malignant stage 3 cancerous brain tumor.   It was discovered after I had a 30 second seizure in the middle of the night, forcing me to go to the ER.  The next morning I was sent to get an MRI & there it was:  a tumor the size of a golf ball, in the front left lobe of my brain.  The tumor was later classified as an Oligodendroglioma (it took me a while to learn how to say & spell that!).

 

One month after my original diagnosis, a new MRI showed my tumor had grown to be the size of a tennis ball.  It was time to discuss surgery.  The surgeon asked me how aggressive I wanted him to be with the surgery because the more tumor and brain tissue he removed, the higher my chances were of having permanent brain damage.  This was a big decision.  But, go big or go home, right?  So I told the surgeon, “You get as much out as you can.  You do your job, and I’ll do mine.”  After being given only a 20% chance of ever being able to use the right side of my body again, & being told I would need at least 6 months of rehabilitation, I opted for a very aggressive brain surgery.  I made a promise to myself & everyone around me that I was determined to cut that rehab time in half.  To prepare for this major life changing event, I made “how to” videos instructing myself how to literally pick up & put down my right leg, & how to wave my right arm back & forth.  I spoke into the camera, telling my future self, “This is how you do it!”  I tried to be as ambidextrous as possible & mentally prepare for the challenge during that month of preparation.  After a long 8 hour surgery & 95% of the tumor removed, I opened my eyes to a new reality.

 

After the surgery I had difficulty getting my thoughts into words.  For example, the speech therapist asked me to name my favorite movie & then describe it.  My response at the time was “A guy uh… goes into the wild…uh and he died.”  I also had a difficult time creating original thoughts.  When the nurse came into my hospital room & asked my pain level, I could not respond until she gave me choices.  When she asked, for example, if my pain was a 4 or 5, I would simply repeat “5”; the last variable in the sentence.  At the consultation before leaving the hospital, my neuro oncologist told me statistics indicate that people with my grade & size of tumor generally have about 5-7 years to live, so I didn’t waste any time.  I had a promise to keep.  On the third day after having brain surgery, I left the hospital.  Only I did not go home, & I did not go to rehab.  Instead, I went to the Mall of America.  And I walked the entire mall, even with 30 staples holding a large piece of my skull together.  I never did attend a single session of physical therapy.  I still smile while recalling the words of my excellent surgeon as he pointed me out as his “star” patient to other doctors.  Even though I could not verbally communicate well, I could stammer out single words & gestures enough so others would understand me.  Within a month after surgery, I underwent proton radiation five days a week for 7 weeks while starting chemotherapy at the same time.  I had Chemo for 1 week each month for 12 months, which left me sick & lethargic, but I was determined to get on with life. I even went back to college to prove I could get another degree, sometimes having to leave the classroom to throw up.  It was the toughest year of my life.  According to my doctors, I am now in clinical remission.

 

I have always had a zest for life & have taken advantage of every day I’m alive, even before cancer.   Carpe Diem (Sieze the Day) has been my motto for many years.  I viewed cancer as just another one of life’s hurdles for me to overcome & now I try to teach others how to deal with fear and disappointments in their own lives.  Life is short & this experience just reinforced that fact for me.  I want to see, learn, & do everything I possibly can.  I have checked off many “bucket list” items, if you want to call it that.  Some of my biggest accomplishments are having 2 degrees in Computers and, after cancer, going back to get a BA in Computer Art & Design.  I graduate in just 3 more semesters.  I also spent the spring of 2012 on a Semester At Sea ship; 800 students sailing around the globe for an incredible 105 days, stopping in 11 different countries.   My adventures have been many, including skydiving & hang gliding.  I rollerblade, snowboard, & I’m a 2nd degree black belt in Tae Kwon Do.

 

I am always striving to make the next year better than the last so, this summer, on the 4th of July, I plan to fly out to Bar Harbor, Maine & ride a bicycle back to Fort Wayne, Indiana.  It’s almost 1300 miles that I will travel alone; it should take about 4 weeks.  I will rely on God, a single tent, & the grace of good people along the way for sleeping accommodations.  I’m calling it, “The Hope Ride”.  My heart’s desire is to bring hope to cancer patients & show them first hand that life doesn’t have to end after cancer.  You can thrive & be a better person than you were before because you never take life for granted & you see the beauty & true value of each day!  Any support you can offer as I undertake the Hope Ride will be sincerely appreciated as I hold the torch for fellow cancer patients & move on to the next chapter of my life.  God Bless You!

-Kevin Sanders

E-Mail :  TheHopeRide@gmail.com

https://www.facebook.com/TheHopeRide

 

Read More of the journal posted May 5, 2013
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