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?
