Tuesday, August 27, 2013

Playdates and preschool

As always, I am almost ashamed at how long it's been since I've put up a post.
No other reason than I've been spending days with the boys and nights with the Captain.
Sometimes you just need a break from all the extras in life.
That, and it was taking all I had to keep up on my housework and family. I have discovered that when life hands me stress, I strip my "to-do" list down to the bare essentials. I seem to cope better that way. It does not escape my attention that this blog was a tool used in processing and working through my grief after the death of Caden. I would enjoy nothing more than to sit down each morning with a cup of steaming coffee and type my thoughts and feelings about life and how God is walking me... us, through it all. However, when Caden died, she was our only child... and I was a stay at home mom... I had TIME. An element I lack in abundance during the course of this new trial.
One day, I may have the required amount of time and time management to write and express all that I wish... now does not seem to be that time.
However, God has been faithful to provide other joyful pastimes throughout my days. The boys are filled to the brim with energy and curiosity, the laundry still refuses to do itself and, of course, there is the Captain to spend time with.
Last week had the added pleasure of almost three whole days with out of town friends. New York and Chicago gave up some residents, and I welcomed them with much squealing of delight.
In college, over the course of 2 years, three other girls and myself all inhabited the same dorm room. Room #359. We, the #359 girls, have stayed close. I grew up with one... so when Julie comes home to visit family I steal her as much as possible. The other two I do not see as often, but Jennie and Michele are far from strangers.
I was thrilled to have Julie and Jennie, as well as their kiddos, in town for a few days. Michele was greatly missed, but having just birthed her third baby a few days prior... we let her off the hook. We are nice like that.
We trekked the kids to the park, had a picnic, to the Children's museum... well past naptime, had another outdoor meal while all the littles played in the water, We also went to the zoo and road the train and the roller coaster... and played in the water again. The kids had a blast, and the mommies tried to get as much catching up and important news relayed in between redirecting, disciplining and quieting our children. As you can imagine, there were many unfinished conversations....
Although incredibly sad to see them go... the Captain and I had another big event to look forward to.
Rigg, the big 4 year old, started preschool.
He was so ready. The Captain and I talked to him for weeks about school. trying to prepare him. Rigg is the kind of child that cannot be hurried or forced into anything, if it is not entirely his idea, or to his liking... it will not happen without a fit or many tears. We took him to back to school night, to meet the teacher night, showed him his classroom, his cubby, got him a new back pack... new shoes.  We talked up the big day as much as possible.
The night before I laid out his clothes and gave him a list for the next morning.
I told him that he was going to get up, eat breakfast, change clothes, brush his teeth, take a picture (had to put that in there or he would refuse) and then GO TO SCHOOL!!!
the last part was said with such enthusiasm on my part that strangers would have been excited to go to school.
On the first day Rigg woke up excited, breezed through his list of things to do and announced when it was picture time. I was beyond thrilled, because... it's Rigg, and although he is super sweet and delightful... he can pout and refuse with the best of them.
When we pulled up at the drop off at school, I told the principal, who was standing outside welcoming the kids, that Rigg might need help finding his classroom. He called over an older girl (6th grade maybe?) and asked her to walk Rigg to his class. Rigg hopped out of the van and jogged up to the door... entered the building not once looking back. He was ready.
I picked him up later that day. He was all smiles. However, when asked about his day he said "Mom! We just played, OK? (exasperated sigh)"
It was like interviewing a teenager.
-exasperated sigh-
Today was no different. He awoke excited, zoomed through his to-do list and demanded another picture. Funny boy.
We shall see if in three weeks he is still as stoked. -wink-

The Captain is slowly improving. Less fatigue, more energy, no headaches... no fevers. We pray the medicine is working and God is doing a miracle inside that lovely bald head!!!
An MRI is scheduled for September 5th, so we should know more then.
Andy was prayed over by the elders at church. It was a comforting moment. I do not know what God is doing. I do not know If He will choose to heal Andy and let us rejoice in His power and mercy, or if He will choose a different road and let us praise Him for His faithfulness and sovereignty and holiness. I do know that not a day of this trial, not a moment of this hard thing is wasted. God is using us to show others His faithfulness. He is using this circumstance to shape the Captain and myself... however uncomfortable that might be, into the people He wants us to be.
This cancer... no matter the outcome, is a work of God.
And it is not wasted... He will use this, my permission or not.
So I pray each day that I can let go... and let Him do what He wants done. 
No matter what.
*still... stupid cancer...*

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!

Monday, August 5, 2013

an update

The past couple of weeks have been rough ones.
The Captain is not well.
Remember when he was in the hospital a few weeks back? Well when he tapered off the steroids from that stay his symptoms came back... we then when to his oncologist, who thought he was not on antibiotics long enough. So he went back on a steroid and antibiotic for two weeks. As soon as he was done with the medications his symptoms of fever, bad headaches, chills and body aches came back.
He's been in bed almost constantly for over a week.
Poor Captain. And there is nothing I can do.
We have an MRI scheduled for Tuesday at 2:45. They are checking for inflammation, tumor activity...anything. Inflammation could mean an infection, amongst other things.
After the MRI, depending on what they discover he will then get a lumbar puncture, a brain biopsy or both. It could be as little/good as the tumor dying off rapidly or as big/bad as an infection or tumor regrowth.
So we might have a very big week ahead.
And I'm starting to feel the stress.
(A scene from The Princess Bride keeps running through my head. When Fred Savages Grandpa tells him "She does not get eaten by the eels at this time." Fred: What? Grandpa: I'm explaining this to you because you look nervous. Fred: I'm not nervous. Well, maybe I was a bit... concerned but that's not the same thing.")
 I would love to tell people "Oh, I'm not worried... God has everything under control. We will be fine! Just a little bump in the road."
And all that is TOTALLY TRUE!!!
But I'm not feeling it.
So I have to continually remind myself that all that is true... and repeat it over and over and over again to myself.
However, most of the time I'm being a mean, angry lady to my family because, really, I do not seem to be handling the past week well. I get caught up in all the whining, the tugging on me to do just what "they" (the boys) need the second they need it...because when you are 2 and 4 your life and your whims are URGENT!!! My House is a pit, and it is super hard to be here to check on Andy, but keep the boys busy and away from him while he rests.
Every time I start to feel overwhelmed. God has given me a break. He has brought calm when I have asked. He has brought to mind that my children, my life are gifts... blessing from Him and are to be cherished, not dealt with.
He has given me, in the midst of panic, worry and stress... peace, in the face of anger... calm, in the wake frustration perspective.
When I have been in need, God has always shown up.
He has been faithful.
I know this whole post sounds like me complaining...a lot. I'm just struggling a little in life at the moment. And I need to write this down so I can remember where I was. Because I know God is going to pick me up and bring me far from here. He is going to shine His Glory through this... and I want to be able to look back and see what a miraculous work he did.
So I need to highlight the lows... to make the highs reveal what they truly are...
Gods miracle.