We received great news on Monday. The most important piece of information we could have received is that this glioma was Grade II and oligo-based... and it is! This means the tumor has slowly been growing for a long time and isn't overly aggressive. However, it was also confirmed that the sheer size and location of the tumor definitely makes it inoperable. So we will have to attack it with Radiation and Chemotherapy. Our ability to maintain and/or shrink the tumor will be our best chance to keep it from coming back as a very dangerous Grade III diagnosis, which is the worst thing that could happen in the coming years.
The next most important piece of information we still need to learn is that this tumor has the co-deletion of the 1p/19q chromosomal arms. We'll find that out later this week. As previously stated, this deletion increases sensitivity to the chemotherapy and improves the prognosis. Looking forward to sharing the results with you!
So, now we need to talk about 3 things. I hope that's not too much.
1. It's Science.
Sitting at Mayo, we had to ask a few tough questions. This tumor will affect my life in some ways. But how much?
We just needed some basic answers about what to (and not to) expect in our future. The quick answer appears it's time I give up on my dream of becoming a UFC Champion. But beyond the important things like that, what about my life span? What about having kids someday? What about my career? What do I tell my friends and family about what is 'scientifically possible' of happening to me?
Thirty minutes later, after Dr. Awesome spliced together stories including parking garages, a single magical car with hundreds of accelerators and brake pedals, his daughter's grades, (assassination theory came back up again - I think that is his favorite), Olympic marathons and his wife's feelings regarding the final installation of the wood flooring in his new house... we got to some answers. (Don't get me wrong, the above metaphors all made complete sense - remember, he is Dr. Awesome).
From a scientific perspective, not including any information about me specifically, if a case similar to mine were to come across the desk of a random oncologist and placed into a pile of similar cases (large Grade II - Oligo-based tumors), the overall pile would average a lifespan of 10 years. However, the individual diagnosis of each case (skewing from the low vs. high life span) cannot truly be determined until after round one of chemotherapy and radiation as well as 6-12 months of monitoring how the tumor reacts.
Dr. Awesome told me, scientifically-speaking, I may (or may not) have 10 years to live.
2. It's not 'entirely' Science.
He then informed me of some benefits he can see right away that aren't entirely scientific. We caught this while I'm young, I'm motivated to beat this thing, I have hope for my future, I have a positive outlook on my current situation, and I'm surrounded by a great support system (that's you - WOOT!). Overall, there is evidence showing my case could do better than the average of 10 years. By creating specific diets, exercising, taking care of myself, showering regularly, etc... I will have a relative amount of power to affect the rate at how this tumor will affect my life.
3. It's not Science at all.
The reason I am telling you all of this is because by reading this, you have expressed interest in following God's story that happens to include me. (And thinking about it like that, this story already includes you too - hope that's cool) But if I were to leave out specific parts of this story, you might miss an important plot point that God is sharing. So by not telling you that I may (or may not) have 10 years to live, I would be holding back information that God thinks is important for this story. So, we move forward together with full disclosure. Cool?
It's somewhat difficult not to lie in bed after receiving news like this and begin to wonder where I may fall on the 'Oligo Bell Curve O' Survival'. These verses have been such a comfort to me:
"My *tumor was not hidden from you
when I was made in the secret place
When I was woven together in the depths of the earth,
Your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."
- Psalm 139:15-16
* ('Tumor' was definitely tossed in by me. I think it's a funny addition. Originally was 'frame')
How freaking beautiful is that writing, not to mention what it actually means!
I'm so glad that God knows me more than Dr. Awesome knows me. While I openly appreciate Dr. Awesome for his knowledge and passion to save lives, he simply didn't know about my tumor until he saw it on an MRI. God knew about this tumor from the beginning. While case studies anticipate life-spans, dietitians predict results and doctors offer scientific reasoning, I trust God knew exactly how many days I had on this earth before even one of them came to be.
It is so comforting to know that God has (for some time now) been designing this new thing in my life. And He is currently orchestrating the climax of this story for His benefit, not mine. If I were to live my entire life with this type of understanding, with this clarity, what type of person would I be? How would I treat people differently? How much more often would I kiss my wife?
"Teach us to number our days, that we may gain a heart of wisdom." - Psalm 90:12
After our meeting to hear about this potential '10 year life-span', Amy looked at me and said, "Wow, it's almost like we need to realize that we should live each day as though it's our last". (Awkward pause... laughter) When did THIS become news? We just had to laugh at the ridiculous statement of our new outlook on life.
We should have been doing this years ago, not after learning about a brain tumor. I suppose I can consider myself lucky that when the days come (and they will) when I start to forget each day could be my last, I have an MRI that proves it. In fact, I should put the tumor photo on the fridge with our Paul Bunyan magnet.
And in the meantime, I am learning very quickly about what the important things in life are: Family flying in from across the world, friends waiting at airports, lasagnas delivered in the trunks of cars, beautiful flowers, envelopes filled with grocery money, hugs from the local store attendant down the street, friends standing up on your behalf and defending your decisions, partners picking up your workload, etc... and we've only been home about 18 hours.
These are the important things that cancer should never 'remind us to do'. This is what it is all about.
So this is what I have to say to you. Take it or leave it.
Dear You,
You may (or may not) have 10 years to live. What are you going to do about it?
Good reminder...
You and Amy are in my prayers!
Posted by: Brittany Donald | June 24, 2009 at 01:26 PM
What an incredible outlook on life and so beautifully written. That tumor will recede, my friend. With faith like yours, you could move mountains. So use that flick-of-the-wrist and move that tumor.
Amen.
Posted by: David Fendley | June 24, 2009 at 01:33 PM
You amaze me.
Posted by: Kim | June 24, 2009 at 01:34 PM
This may (or may not) be the most inspiring/important blog that I read... thank you David. Blessings on you.
Posted by: Patty Boge | June 24, 2009 at 01:42 PM
Your wife has inspired me photographically(?) and now you are inspiring me spiritually. Thank you! Prayers from Florida are sent your way!
Posted by: Lisa | June 24, 2009 at 01:48 PM
dear 55Zebra. I send my prayer and love to you and Amy. And thank you for talking about Him. You are doing what He has written for you in His story. Keep living for Him. He loves you. And thank you for making us all smile when we read Your words. You have a wonderful attitude. Now, go kick some cancer bootay!.
Posted by: Monyeen | June 24, 2009 at 01:49 PM
"...[God] is currently orchestrating the climax of this story for His benefit, not mine. If I were to live my entire life with this type of understanding, with this clarity, what type of person would I be?"
In this clarity, David, God is magnified. By grace, may the rest of us see the meta-narrative so clearly.
Posted by: Patrick Smith | June 24, 2009 at 01:53 PM
Thank you for sharing your journey with all of us. You are absolutely right, God is using you to speak to each of us who have stumbled upon your story. I am a 5 year cancer survivor and I was just telling someone the other day how the feeling of never taking anything for granted was starting to slip away. So, I have recently been working on getting that feeling back so that it doesn't take another "diagnosis" to bring my priorities back into focus.
I am praying for you everyday!
Posted by: Nicki Smith | June 24, 2009 at 02:01 PM
Again - you're amazing. I have bookmarked your blog, and will follow it as long as you write. The world is a much better place with having you in it :)
Posted by: Angie | June 24, 2009 at 02:15 PM
I'm going to love. Thanks for the inspiration. Praying, praying praying for you.
Posted by: Lori | June 24, 2009 at 02:18 PM
Wow! What a post! Thank YOU David. You are teaching and reaching people and changing lives with your story. How amazing is that?!
Posted by: Sunshine Trout | June 24, 2009 at 02:21 PM
You are amazing. I have prayed for you. I will continue to pray for you.
Posted by: Amanda Key | June 24, 2009 at 02:21 PM
So, I started writing a comment that quickly turned into what might be better as a long blog post! :) Short story is that I'm praying for you guys, and I'm so amazed and inspired by all that God is doing through you! Thank you for sharing and including us in *your*/God's story. I will keep praying for you guys! I work in a hospital, and deal with issues a lot, and I am SO glad that you have a Dr. Awesome!
Posted by: Christine Pagan | June 24, 2009 at 02:27 PM
Wowzie, I think this is excellent, so when you are living in the moment for this day, for this time and this place looking for joy and appreciation, laughter and love you are basically reconfiguring your life and the science to support it, out into the future. I don't personally know you David, and yet I feel that it will be you and your strong partnership with faith who ultimately decides how long you would like to be here on this planet in your physical body. I for one look forward to hearing about your grandchildren when the time comes!!
Posted by: jane cosner | June 24, 2009 at 02:28 PM
God is being glorified through you and that, my friend, is a blessing.
Posted by: dawn | June 24, 2009 at 02:33 PM
Wow David. That is exactly what I have been thinking about ever since I left you and Amy. Trying to live differently, realizing none of us know the number of our days. Trying to remember the frailty of life and that I am not invincible. I wish I were still with you guys. I love you both so much and am praying, praying, praying. God still DOES heal. Thank you for letting Him use your situation to minister to others.
Posted by: Angela Patrias | June 24, 2009 at 02:41 PM
Praise God for His goodness and grace in your life. Keep speaking truth. The world is reading.
Posted by: Aaron M. | June 24, 2009 at 02:47 PM
I am so inspired by your story. I follow your wife's blog and stumbled upon yours and I am truly astounded and amazed by your willingness to share and to see the positive in your situation. Thank you for teaching me about courage and for sharing your story with all of us!
I will be praying for you and your family from Victoria B.C. Canada.
Posted by: Jen Wray | June 24, 2009 at 02:50 PM
Amazing. That's what this God story is. Amazing! Made me cry today. :)
What beautiful perspective you have, David!
We're praying for you guys.
Hugs!
Posted by: bethanyfphotography | June 24, 2009 at 02:51 PM
David and Amy~
I do not know you, your family, your friends, or even your grocery store attendant but, I know your God!
I have been looking for a good devotional for a long time and I have found it. It is called "Jump David Jump". I have found a devotional with inspiration, guidance, verses, and at least one soul searching question each time I open it.
So, David and Amy, I would like to thank you from the bottom of my heart for continuing to share your story with me.
May God bless you and keep you,
Tena
Posted by: Tena Lara, Lawrence, MA | June 24, 2009 at 03:31 PM
What a beautiful challenge and reminder. Blessed by how God is using your story and praying as we continue to see it unfold!
Posted by: Jennifer Austin | June 24, 2009 at 03:39 PM
Ry and my prayers are with you and your family David - God has a plan for us all! :o) You'll always be taken care of... *hugs*
Posted by: Brianne Wilde | June 24, 2009 at 03:50 PM
considering that we just unknowingly delivered yet ANOTHER lasagna...you could open an italian restaurant on the side. when i read the wiki link you gave the other day-my reaction to the time frame was the same. you are living with a reality that we ALL ignore on a daily basis. thanks for yanking the chain.
Posted by: 1eyedmonkee | June 24, 2009 at 04:59 PM
Looking forward to seeing you.
I am AMAZED at this wonderful stage GOD has given you - keep glorifying HIM (and challenging the rest of us) as the story of Operation 55-Zebra unfolds....
Posted by: Jeff B | June 24, 2009 at 05:30 PM
ok. you have me sitting here crying. what amazing words, david, and how often we forget. thanks so much for sharing... yall are in our prayers!!
megan
Posted by: megan (brewster) cornwell | June 24, 2009 at 06:08 PM