Tuesday, October 6, 2015

Doing Battle, Week 54

This morning I am up out of bed after 36 hours, feeling like we dodged a bullet. I awoke at 2 AM Monday with a sick stomach that had me up for the rest of the morning. I could not get out of bed. By  the afternoon my temperature started creeping up and Shaun and I started making plans to head down to Urgent Care at Sloan once I reached 101 degrees.

I took some Tylenol and set my alarm to get up twice through the night to check my temperature and thankfully my fever went down. I woke up feeling good, just weak from only having water yesterday, so it seems it was just a virus, thank the Lord.

Without a word of complaint, my superhero husband stepped in and took over like he has done countless time over this past year. He got the kids ready for school and walked them down. He went to the office to try to make us a little money. He was back in time to do school pickup and homework and multiple soccer practice runs and bedtime. Shaun pulled up a chair to our bed and administered my antibiotics.  And then I put him in the difficult position to decide what we were going to do. I lean on him heavy. Sometimes (usually) my brain doesn't function well enough to make choices and I look to Shaun to just tell me what to do, leaving him in a position to make the necessary, hard calls on our next course of action. I'm so grateful for his strong, broad shoulders.

Today I am weary and worn. I don't understand. In real life, I am such a simple, drama-free person, so its been hard to become Complication Girl in this cancer world. My once strong, healthy body that all my life I've taken meticulous care of is not cooperating.

If you believe that somehow God could change your circumstances, but that God has chosen not to, you have the option to receive whatever it is you are dealing with as a gift with a purpose and a promise. If you believe that God could if he would change your circumstances and you've prayed and prayed and prayed but it looks like God is not going to act on your behalf the way you want God to act, you have the option to change your attitude and your perspective about whatever it is you are facing. And you have the option to receive it as a gift with a purpose and a promise. The purpose is yet to be made known; the promise is "My GRACE is sufficient for you". ~Andy Stanley

But He has said to me, “My grace is sufficient for you [My lovingkindness and My mercy are more than enough—always available—regardless of the situation]; for [My] power is being perfected [and is completed and shows itself most effectively] in [your] weakness.” Therefore, I will all the more gladly boast in my weaknesses, so that the power of Christ [may completely enfold me and] may dwell in me. 2 Corinthians 12:9

Though this journey can get lonely, I am reminded daily, in multiple ways, that I am not alone. Its such an encouragement, and I thank you for that.

Even though its not Shaun's favorite, he went out of his way to bring me the coffee I like.

My expectations of hospital food are pretty low because there are all sorts of challenges involved, but the food at our local hospital was simply not edible. Fake, processed, nasty. If I ate those meals three times a day, I would be a more regular customer. Shaun smuggled in some real food and I was touched that he would cut up an avocado (first time!) Later, Avery secretly told me that he did it all wrong. :)

In addition to the signs outside my door that said BEWARE...infections! the nurses also posted a sign on my door that said Do Not Disturb while I was conducting interviews on Monday and Tuesday. They were great about it and so was my boss (in case you're wondering, he's not a jerk, I was just insistent to stay involved as long as he was ok with the questionable professionalism of it all, what with the loud speaker going off every so often to get assistance for someone needing to go to the bathroom).

My nieces and nephews have been so sweet even though most of them (mercifully) are too young to understand.  They literally have the faith of a child and have spent countless hours praying for me. They also pick me flowers and sing me songs and make signs.

 Late Tuesday afternoon this crew sprung me out of the hospital. On our walk home (its actually a mile not 1/2) we made another attempt at the family selfie. How'd we do?? :)

I brought home these shower caps for the girls to try out. It comes in a warm package with shampoo and conditioner in it. You massage your head for a few minutes and, wha-la, clean hair with no rinsing.

The girls are learning to do quick errands for me, as I'm avoiding public places. This day Avery was mailing out my CT Scan disk for the surgeon.

Love is spoken in many ways.

There were a few questions about my antibiotics. I'm on two. One is pills three times a day, the other is delivered once a day through my port, which stays accessed, meaning the needle stays in 24/7. Shaun is every nurse's best friend as he's capable of and willing to do so much of my care.

Sunday, October 4, 2015

Project 365, Week 40

A week ago I was blogging from a hospital bed. I'm so happy to be back home, sitting at my desk looking out at the morning sun and listening to my kids play in their room. I got to hug everyone this morning and help them get breakfast. I'm on my third load of laundry and later I'll be able to go watch a soccer game. Life is good and life is hard.

September 27
Not happy about waking up in a hospital room, but happy to wake up breathing and happy the sun came up, too.

September 28
A little "behind the scenes" shot of me working. I'm helping with the hiring process and we had a candidate doing a second interview in personal. Since I couldn't be there face-to-face, I joined via video, which was just waist up. :)

September 29
Soon after the kids got home from school, I got to come home from the hospital. It was lovely to be home and to help with homework.

And make the soccer practice run.

September 30
Soccer practice rained out = fun family time

October 1
These two had a short-lived stomach bug so they were home from school. We stayed on different floors of the house most of the day and I lycoled like a mad woman. Later, Avery would mourn that the day was over, recognizing it as a special time she and Aiden had together.

Amanda was happy to be the queen of the downstairs. Her daddy took her shopping to buy some needed sports equipment and she and I made cookies and brought them to the neighbors, something that's been on her heart to do for many days.

October 2
This is the only picture I have from the day, which is unfortunate because I actually got dressed and helped interview a couple people. My nurse came at 7 pm (after giving me a 4-5 range) to change my port access and this is a picture of the setup we have for Shaun to administer some of my antibiotics. Its about a 20 minute process once a day and it allows me to not be in the hospital. I'm embarrassed to admit how exhausted I was from the day and had no trouble sleeping for 10 hours.

October 3
Aiden has quickly caught on to the joy of slow weekend mornings.

Avery played in a soccer game that was cold! 47 degrees at game time with some wind so we dug out the winter gear. :(

More Star Wars Monopoly. It seems to work really well for our crew and we've been surprised how much there is to learn from it (don't tell the kids! :)

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 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).