Wednesday, August 14, 2013

The Captain took it better than me

Quite a lot has happened in the past week. I have been lazy in posting about it because I was... still am, slightly, emotionally comatose. (and tired, oh-so-very tired.)
It was a bit of a whirlwind that left me wiped out for a day or two.
Last week we got some terrible news, 24 hours later we heard much better news that negated the horrible news we had heard the day before...
(I feel like if I don't share that right upfront someone might not read to the end and have bad information...)
Let me start at the beginning, shall I?
Last Tuesday I took the Captain in for his MRI. I was nervous. It had been almost 6 weeks of weird symptoms and a husband who hardly got out of bed. I would be lying if I said I was totally cool and whatever we found out was just fine. I KNOW God is in control, I know He has a plan and a purpose... I know that whatever He chooses for our lives is what is best.
I know all of that.
And I trust Him.
I was still scared to see the picture and hear the words.
Ignorance is bliss, folks.
We didn't have a super long wait for the MRI or the for seeing the doc right after. As soon as she came in I knew she was giving bad news... I saw it in the way she walked in, in the way she didn't  come right out and say "Everything looks fine." like she usually does, I saw it in her eyes.
And my heart sank a little.
When she pulled up the images from last month and compared them to the new ones... it was painfully obvious that something was wrong. The amount of swelling in the Captain's brain was overwhelming. Big blotches of foggy brightness... which in MRI speak is "something is amiss"
She pointed out the differences, brought attention to the swelling.. and then gave the bad news. The tumor was growing back... Here, here and here... ( I hear the genie from Aladdin "Here, here, here, here, anywhere! ") 
Andy was a rock. He nodded and took in all the information with a "OK, so what can we do now?"
All the time I was sitting with tears streaming down my face. Thinking, no... NO, this is not happening....
When a brain tumor, like Andy's, is active and starts to grow, there are only so many options. A drug trial is available. The doc says she has one patient that it works well for... they have been on it three years.
That is the biggest number we heard.
3 years is not long enough for me.
I was, in short... a hot mess.
I think I even muttered about "stupid cancer" under my breath once or twice.
Andy told the doc about Heaven.
He will have a better seat there, in Heaven.
The doc said she still had not received the final reading from the radiologist, but would first thing the next morning. Her office would call and set up a time for  Andy's first infusion of the new drug; she would also call me as soon as she heard from the radiologist with the official reading.
So we went home. Told our family, told our friends. I posted on FB and Instagram...
and then, like always, God worked through His people, used their words, their actions to lift us up and encourage us. He used their arms, their hands, their reminders of His promises to comfort us and love on us.
And by Tuesday night, I was not happy... but I had peace.
Because my God is bigger.
Wednesday is a blur. 
But as I was shopping with my mom and both the boys late in the day...I got a call.
It was the Captain's doctor. She apologized for calling later than expected. The radiologist had called her late, and after their conversation she wanted to go back through some of her patient records first...
According to the radiologist and the profusion reading, Andy's MRI was 100% negative for tumor activity!
What looked like new growth on the MRI was actually radiation necrosis. Which can cause swelling, look just like tumor growth and cause a myriad of other symptoms.
Basically the capillaries in the radiation site of Andy's brain are breaking down and leaky. This is not nothing, it is a serious matter and needs addressing... but it has a treatment and a much better outcome then rapid growth of a brain eating tumor. The doctor said the radiation Andy underwent, (proton therapy) is new-ish treatment (not widely available to everyone), and it also has a different pattern then standard of care radiation. Proton therapy can cause necrosis later then traditional radiation... she only had 3 or 4 patients that had presented with cases similar to Andy's... hence she thought it was tumor regrowth.
The Captain immediately started on two medications to help with the necrosis and has another MRI scheduled for the 5th of September. He is still taking an oral steroid to help with the swelling.
After I got off the phone with the doctor I called Andy and told him the good news, and congratulated him on his non-tumor.
I then felt I needed to post to Instagram and FB as soon as possible so people who love us and were brokenhearted could praise with us and rejoice.
Well, that's my story... the roller-coaster of emotions that we road over a 24 hour period last week. I know it had it's purpose... getting the bad news. We all learned a little something...
mainly that Andy is a saint and I need work.
Thanks for your continued prayers. We still need them! For Andy and his necrosis and me and my sanity!


Julie : ) said...

I love it.

Amy said...


I've been reading your blog for a few years but am not a usual commenter on any blogs that I read, however, I feel it is necessary to leave a comment today. I breathed a sigh of relief when I read this post. I pray that you continue to trust in God and post about your faith. I am so happy for your husband and your family that the news turned for the better in 24 hours. That's wonderful!!!

Emily said...

Two things:
1. So, so, so happy to hear the good news about Andy!
2. I love that picture of Rigg with the thumbs up. Adorable!

Sabo family said...

I went from crying tears of heartache to tears of relief and joy all in the span of a minute. So thankful that the results were different than initially thought and Andy can start on medicine that will hopefully take care of his symptoms.

Keeping you guys in our thoughts always!