Monday, September 28, 2015

Doing Battle, Week 53

Early last week Shaun and I sat down with our calendars (my paper one, his electronic one) and figured out when we were each working, who was going to run kids and when, what appointments we had and finally ending the weekend which included five soccer games and lots of family time. It was my off week and we had a good plan!

 You can make many plans but the Lord's plans will prevail. Proverbs 19:21

Our plan started out well. By Monday I was able to take over the kids and some household responsibilities so Shaun was freed up to work and deal with some of his irons in the fire (This man is quite remarkable.) and I was able to make some progress on a special project for work.

All week I was a little low on energy, never really feeling a "bounce back" from treatment and by Thursday I was running a fever. I laid low in the afternoon and went to bed early. I woke up feeling functional and went about my day but by early afternoon I was running a temperature again. When I could, I crawled into bed and finally let Shaun know he needed to come home.

He got home, got kids where they needed to be and then gently insisted that we go to the ER. We've been told time and again to do this anytime my temperature goes above 100.5. I was at 102. Although we got right into a room, I will make a long story short and say that we were there six hours. They did a whole work-up, including chest x-ray, blood, etc. In the end, everything came back clear or inconclusive, as many of the cultures take days to grow.

The ER doctor reached out to the oncologist-on-call at Sloan who said they would admit me for 48 hours and put me on IV antibiotics if I was in New York. I declined, opting instead to go home and rest and stay away from germs.

Saturday morning I laid low and the visiting nurse came. Shortly after she left, the hospital called saying one of the cultures had come back showing there was bacteria in my blood. She strongly urged me to go back to the ER to get admitted. I called Shaun, who was picking up Avery from her soccer game on his way back from an apartment building, where someone's bathroom ceiling had collapsed because of a leak above in the other bathroom. I packed a few things and hung out with Aiden while we waited for my mom to drop off Amanda from her soccer game and Shaun and Avery to get home. Once we were all together, we walked the half mile or so to the hospital on a lovely late-afternoon day. (Admittedly, we have some work to do on the family selfie!) (Another side note: Shaun would like our OBX peeps to be aware that more people died this year as a result of selfie accidents than shark attacks. ;)

Once checked in we did more blood work and a CT Scan. Another six hours in the ER until they admitted me and moved me upstairs. Shaun and the kids stayed with me for a bit and I hope they will remember it as the night we all walked to the hospital (where they were all born, Shaun included) and they got to play games on the iPad and look at Instagram on my phone. After a bit Shaun took them home to bed and Amy took their place. We hadn't had time together in so long. It was nice.

Currently, I'm in a reverse isolation room (no roommate! ;) and have been on heavy-duty IV antibiotics since Saturday night. We've been waiting for results to come back and this afternoon we got the news that it is both a C-diff and Staph infection. Very treatable but very good it was caught early...I'm so thankful Shaun made me take action and not wait it out.

Among other things, this means my chemo treatment can't happen this week, which is discouraging. I always say, the only thing worse than getting a treatment is not getting a treatment. It messes up the plans I'd made in my head for what I would be well for and what I could participate in and it stretches my end date out further. This wasn't part of the plan.

Feeling a little like we were boogie boarding and got pulled under and we keep trying to right ourselves and get to a standing position but the waves just. keep. crashing. This is hard. The intensity of it, the longevity of it, the confusion of it, the toll it takes on other areas of our life. Shaun had to answer the question from Aiden, Is Mommy going to die from cancer?

The harder it gets the more fervently I trust that God is in it all. He's the only thing that makes sense.

We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us! 1 Corinthians 13:12

If you walk by my hospital room, you just might hear me singing:

We bring our expectations
Our hope is anchored in Your name
The name of Jesus
Oh, we trust the Name of Jesus

Sunday, September 27, 2015

Project 365, Week 39

I type this post from a hospital isolation room, where I am quarantined and being pumped with plenty of heavy-duty antibiotics to deal with a yet mysterious infection. You can go ahead and be impressed that I came prepared with a laptop and charger and comb and toothbrush, among a few other things. I'm what some might call a professional patient. ;)

Any day of the week my blessings out weight my trials by the ton. Today I choose joy.

September 20
Shaun sent the kids out to cleanup their part of the garage. Avery did a thorough job culling, organizing and cleaning....

...and these were her helpers.

Also, I just noticed that Avery is wearing Amanda's pants and Aiden's shirt and Amanda is wearing Aiden's shorts. All three pretty close to the same size right now.

I gave them a list of "to-do's" in the morning, with a promise of fun in the afternoon once everything was accomplished. We went to our local state park, set up a chair and enjoyed the glorious-ness of a late summer day. Well, that's what I did. Aiden and Amanda enjoyed wading into the water and throwing rocks at a dead fish. To each his own. ;)

Later, Pop came over to give Amanda a guitar lesson, which is much more effective in person than over facetime. She was so proud that she learned a song, Mary Had a Little Lamb!

Seeing my dad with a guitar strapped to him is as natural as seeing him wearing his shoes. I've always known him with his guitar and can still smell the inside of his guitar case and feel the fuzzy blue inside. I'm so glad its getting passed down (the skill, not the case ;)!

R took over the kitchen and made dinner for some friends and then they did a campfire. I listened to the sound of a dinner party happening at my house with longing. Its what our home was meant for and I miss it.

September 21
Walking home from school with two of my favorite people, telling me stories from their day. So honored to be their mom and grateful to be able to walk them to and from.

My cousin sent me this, saying I was her gratitude inspiration on World Gratitude Day. So sweet and I could not agree with this quote more.

September 22
Just because we can.

September 23
Before school.....

.....after school

September 24
There are countless things I love about Shaun...his desire and patience for teaching our children is just one.

September 25
Second day with a fever and it spiked to 102. Shaun gently insisted that we go to the ER, which is what we're supposed to do at 100.5.

September 26
Back at the ER. Long story alert for tomorrow (at least that's my plan).

Monday, September 21, 2015

Doing Battle, Week 52

[Long post alert...apparently sleeping for the better part of four days causes me to be a little "word-y" :)]

Fifty-two weeks is also widely known as 365 days, 12 months or one year. I guess I had my little meltdown last week because "the day" came and went without fanfare. One thing I appreciate about chemo weeks is that there's no time for frivolous emotions. Its just buckle-down and do-what-you've-got-to-do time.

Time. You can't help but think about it often with cancer. When we found out the news, Shaun and I both had immediate questions regarding time. His was, how long do we have? (as in, when am I going to lose my wife) and mine was, how long is this going to take? (as in, can we get surgery done STAT so I can be recovered in time for the marathon I'm running next month).

Now, a year later, my questions about time are a little different. :) Over this year of living with cancer, I've learned some valuable, perspective-shifting lessons about time.

First, my measure of time is different than God's. That's not exactly a deep revelation, but up until cancer I kind of felt like He and I were doing the same pace....I had a plan and He put His stamp of approval on it. I got married when I wanted to (or at least soon after it was legal ;), earned promotions  in my career when I felt I deserved them, had kids on my timeline. While I always desired to be in His will, I didn't have to patiently wait for or endure much of anything.

Second, cancer has helped me hold loosely to this life I have here and I've taken great comfort in knowing, in my heart, that my life is just a vapor.

Yet you do not know [the least thing] about what may happen in your life tomorrow. [What is secure in your life?] You are merely a vapor [like a puff of smoke or a wisp of steam from a cooking pot] that is visible for a little while and then vanishes [into thin air]. James 4:14

Knowing that my life is like a puff of smoke makes worrying about whether I live to be 41 or 91 seem ridiculous. Of course I love life here on earth and I hope I get to be at my children's graduations and weddings (which my surgeon continually reminds me is her goal) and beyond, and I wish I could love Shaun for a lifetime plus one, but a long life here is not one of my higher pursuits as it once was.

In the beginning [before all time] was the Word (Christ), and the Word was with God, and the Word was God Himself. He was [continually existing] in the beginning [co-eternally] with God. All things were made and came into existence through Him; and without Him not even one thing was made that has come into being. John 1:1-3

Third, God is patient with us when we ask How long, Oh Lord? He listens as we ask again, Why is this taking so long? Really...another day in the hospital? Why chemo...again? God is the beginning and the end. The Bible says a thousand years to us is like one day to Him. God understands that we are not operating on his timeline. Since he designed us and built us, he's well aware that he left out the part that can grasp how there is no beginning or end to time; how one thousand years can possibly equal a day.

The Lord does not delay [as though He were unable to act] and is not slow about His promise, as some count slowness... 2 Peter 3:9

And fourth, His promises are true. He provides strength when we grow weary in the waiting. His presence can be so sweet in that seeking place of waiting.

He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:29–31)

One year. Some of you have been doing our story with us since before Doing Battle, Week 1 was ever posted. You've come to this space week after week, wanting to know how we're doing, checking up on our family. Some of you have come aboard throughout the year and have added in your support. Many of you I've never met and will never get a chance to sit down with, coffee in hand and hear your story and share in your pain.

But from a very full heart, I want to thank you all for "being there". For caring about us, for loving us in very tangible ways, for trusting with us that God is using this for good. We've been so very blessed to know community in new and amazing ways. We are grateful, so very grateful for the ways, both big and small, you've joined with us on this crazy ride and been a means with which God demonstrates His love towards us. As a friend noted this week, along with the gas cards her family sent, God is in the littlest things of every single detail--relish His care and how He sends it to you.

He doesn't miss a single detail...all of our needs have been provided for. THANK YOU for being His hands, His feet.

A quick word about this week....

Treatment 2/10 was Wednesday. As always, we departed about 4 AM. The bumper-to-bumper starts about 6:30 AM anywhere near the city, so we like to be arriving right about then. We get parked and then get breakfast sandwiches at a shop next door to the cancer center.

By 8 AM we are comfortably settled into the waiting room.

This time the labs and the doctor saw us early, so we weren't there long. We learned that from our appointment two weeks ago that its not until after we see the oncologist and everything checks out ok that my chemo concoction is mixed and sent up, about two hours. Since it was a gorgeous day we decided to walk the 20 minutes to Times Square to get a change of scenery.

We had just arrived when I got a call on my cell.
Ms. Cour, did you step out for a moment? We are ready for you. 
Oh, I'm sorry, I thought it was going to be two hours before we could start treatment. 
Well yes, that's generally how its done, but they actually pre-mixed your batch.
Ok, we'll be there in 20 minutes!
No problem. When you get here, just come right in...we have a room waiting for you.

I felt so guilty because of the ever FULL waiting room of people, but I was thankful for God's favor. It takes about seven hours for me to get the full treatment, so all the better if we can start early!

This time we had two surprise visits. The first was from my surgeon. She discovered we were in the building but didn't have an appointment with her, so she and two nurses came to my tiny treatment closet, armed with all the supplies they needed to check on me. I never even moved from my recliner. I was floored that my highly-regarded, world-renown surgeon would do that...she's a rockstar. God's favor!

The second visit was from Amy and Colombo. They were in the city for the day witnessing a 20-year marriage vow renewal in Central Park. I was a little out of it, but it was definitely a bright spot to see them at the end of a long day.

We are rejoicing to have two treatments down, without incident. FOUR more to go.

Sunday, September 20, 2015

Project 365, Week 38

The weather this week has been completely fabulous...just perfect. Some of it I got to experience first hand, some of it I got to see through a window, and all of it I was so grateful for.

September 13
Shaun worked on some "honey-do" projects around the house. Among other things, he hung a much needed closet organizer in the girls bedroom. I'd like to say the girls and I got it all organized and put together, but it actually looks pretty much the same a week later.

We drove to timbuktu to watch Amanda's soccer game. She spent most of the game benched, which she seemed to rather enjoy...eating snacks, drinking from her jug, playing with a mist fan, singing to the trees. Argh!

Aiden snapped a great one of my mom.

September 14
Homework time...controlled (ideally) chaos.

This day was remarkable because Avery walked home by herself from a student council meeting. We live less than two blocks from school, and she's been walking these streets since she was born, but even though Shaun and I had no reservations, it felt SO BIG!

Her friend (who lives on the other side of town) expressed some worry about the marginal neighborhood Avery has to pass through but Avery didn't know what she was talking about.

Two days later we were in New York City, watching kids younger than Avery maneuvering through the city, getting themselves to school. Fun to see the different perspectives. :)

September 15
I insisted that we do Aiden's 10 minutes of reading was just too beautiful!

Amanda got to have some special daddy time.

September 16
Back to what is beginning to feel like my home away from home.

September 17
If you've got to be in bed all day its nice to be in a room you love, with a pretty view and a lovely summer breeze blowing through the opened windows. So blessed!

September 18
I was only awake for about 4 of these 24 hours, but I made sure to get outside with my favorite first grader. His 4th & 5th grade sisters don't have homework on the weekends, but he does.

September 19
Amanda was asked to fill in for the rec soccer team. Apparently the wind was blowing a different direction this day because she scored three goals and one assist before being called off by her coach. And she didn't allow any goals the quarter she played keeper. Ah...the beautiful mystery that is Amanda.

Its going to be a good week...are you in?!?