Numbering Days While Doing Battle

Though I love the weather and routine and activity of the month of September, it has also become a month of personal remembering and reflection. Nine years ago today I was first diagnosed with cancer. 

All summer long I had been training for an October marathon, but also all summer I had pain that just wouldn't go away. When I mentioned it to my Ob/Gyn doctor, she recommended I go to a GI doctor. I remember sitting in that exam room, looking at a wall of pamphlets on issues and diseases I'd never heard of or considered before. How in the world, I thought, are they going to narrow it down to something??

Weeks later, when I woke up from my colonoscopy, the GI doctor was there to tell me they'd found a tumor. She was non-committal, saying it would be biopsied and she'd call in two days with results, but her eyes told us what she already knew. And two days later, late on a Friday, September 19th, she called with the cancer news. 

Just like that my life changed, never to be the same. Suddenly, I felt exiled from the life I loved. I had made plans, I had worked hard and made good choices and still, I was faced with this diagnosis that would change everything.

It's difficult to see pictures of me before that day. This is me on my 39th birthday in January (when my kids were all shorter than me!), a new, fresh year with possibilities stretched before us, no way of knowing what lay ahead.

I want to warn that girl....I want to tell her....tell her what? Tell her about the journey, the horrors, the unimaginable? Had it all been laid out for me as a choice, I would have said, no thank you and slid the offer back across the table. It just all would've sounded too... impossible.

And honestly, it nearly has been.  When I look back and think of so many unspeakable things I've been through and the sheer duration...it feels impossible. Though now time and experience have taught me that the impossible can become possible. I have a long list of "things I thought I could never do but have", yet still there is a looming list ahead.

You know that feeling, staring at something in your life you didn't choose, that feels too big and scary to face and go through. Maybe yours is depression or anxiety, addiction, or marriage struggles (or parenting toddlers or teens ;)). No doubt you have felt that impossible, overwhelming, out-of-control, how-is-this-my-life feeling.

We have to find a way to live now, forever changed. Maybe with love and courage and joy and hope. Because what other choice do we have, except to move forward with a life we didn't choose?

What I can tell you about my own personal experience is that I would not be here today without God. His daily presence in my life, the strength He provides so I can get up and face another day, the heart-knowledge of His steadfast, certain love for me, the promise of eternity.

Hear me say...there is so much I don't understand and so much of it I hate. But God is good and sees the entire picture. This is part of the story He is writing for me, for my family. He didn't make a mistake, this is not Plan B. I actively place my trust in that.

As Katherine Wolf says, The good life and the hard life aren't mutually exclusive. We can love and celebrate our stories, even the ones we never could have imagined ourselves living. God made us to do the hard thing in the good story He's writing for our lives.

I could fill pages and hours telling of the things I've learned, the miracles I've experienced, the good and beautiful of my story. In part I have, beginning with my first Doing Battle post and then my first Numbering Days post. Because ideally, you don't go through something like this without learning some lessons and secrets about life. In a nutshell, this life is hard, this life is short and temporary, there is true hope and sufficient grace in Jesus.

If I had to pick my top verse that has carried me, I wouldn't be able to do it. But when I think back on the last nine years, the top three that have been with me from the beginning and have helped me the most it is these:

Will you, with me choose to trust God, our Creator? Will you decide, for another day, to move forward with love and courage and joy and hope? God made us to do the hard thing in the good story He's writing for our lives.

Numbering Days, Week 17

Because of Thanksgiving, I started and ended this week around tables filled with family. I am most blessed! There was a weightiness to it, but it was heavy with gratitude. That we have each other, that we have this year, together.

You can mourn what's been lost even while you acknowledge what you still have. 

Your grief doesn't lessen your gratitude, it transforms it. Holy, fragile, beautiful.

~Michele Cushatt

Shaun and I were on the road by 5:30 AM on Monday, hoping to beat the worst of NYC morning rush hour. Before we left I wrote the kids notes and made sandwiches, like I was a normal mom. Its such a game-changer this time around, that they don't need childcare, or even transportation for the most part.

I would prefer to never go to New York City again in my life, but I can't deny the beauty and grandeur of it. I was amazed by how many leaves are still on the trees.

Treatment was seamless enough and we didn't have an appointment with the doctor so we were home about an hour after the kids got home from school. I slept during treatment, on the ride home and immediately crawled into bed for the night. Sleep is my best bet for the first few days.

Love comes in foil and takeout containers. It comes in handwritten cards and timely text messages. There is potential for this to be such a lonely road, instead we are well cared for and reminded often that people are thinking of us and praying. 

To my great annoyance my blood count levels made the threshold just enough to be able to receive  treatment, but required an injection. They asked that I go back to New York to have my chemo pump taken off and then the shot. It was the last thing I wanted to do two days after chemo and the day before Thanksgiving, but my attempts to counter offer were ignored.

My friend Shelva was in town for the holiday week and jumped at the chance to drive two hours to NY and two hours back on the busiest travel day of the year. I'm grateful for the time we had together, even in my state. 

We often marvel at how different life is from our teen years and we were together whenever possible. Now we are parenting our own teens, growing gray hair, talking about our respective surgeries and making stops at the cancer center. Lifelong friends are a rare and beautiful treasure.

My girls and my in-laws executed Thanksgiving Day such that I got to have my house full of people without doing much of anything, which was exactly what I felt up for. 

Again, a table full of people I love and a heart of gratitude.

 

Numbering Days, Week 10

This week was especially special because I got to witness and photograph Madison's wedding. There are so many thoughts and feelings that I've suppressed to get through, but I'm truly grateful. And honored. And I have focused on the sweetness that is the circle of life and young love. Such beauty in being loved and in loving.

It was at Shaun's suggestion and with his blessing that I postponed treatment a week and take the risk of being with 300 people while my immune system is so compromised to be at the wedding. What a gift that he sensed how important it was to me and championed me. That has always been his way.

I had supernatural strength and mobility and got through the day with a ton of help from Meg, who carried things, reminded me to sit, fed me pills, ran to get things I forgot, and just overall had my back. What a gift to shoot another wedding together. We've done enough now to fill a book with our stories. :)

All my words fall short

I got nothing new

How could I express

All my gratitude?

I could sing these songs

As I often do

But every song must end

And You never do

So I throw up my hands

And praise You again and again

'Cause all that I have is a hallelujah

Hallelujah

And I know it's not much

But I've nothing else fit for a King

Except for a heart singing hallelujah

Knowing what I know now, three-quarters into the year, I find it interesting that this would be the first year I've ever read through the Bible via a Bible-in-a-Year plan. Its felt tedious at times, but my biggest takeaway is what I already knew to be true but am seeing it with fresh eyes... it is not a book of random stories, it is all one story. His story. It's all woven together with the thread that is God's pursuing love. His promises are fulfilled over and over and over.

This morning I was re-reading some things in Isaiah, except now I have fresh context. In this particular section, God was calling his people out of exile and I love what my study Bible says: "God calls his exiled people to leave...staking everything on his promises".

It jumped out at me. I have seen His fulfillment of promises, I have experienced that His love, His peace, His presence is enough. Today, as I go into treatment #5, I am staking everything on his promises. Nothing else is strong enough to hold me. 

Thank you for your prayers, thank you for your faithful love. We are being carried by you, our beautiful community. 

Numbering Days, Week 9

At Shaun's suggestion, I delayed treatment a week so that I could have a best-case scenario for Maddy's wedding, which is this Saturday (!!!). So, I am neither recovering from or dreading one....what a delight! Instead, I'm doing the work to see the miracle that is every day life. 

Gratitude. It's a choice, it's a habit to develop, it's a way of life that can transform us. In the face of anxiety, anger, depression, sickness, it maybe sounds simplistic to say that gratitude is the answer to nearly every problem we face but I truly believe there's something to it. Being thankful may not change our circumstances, but it absolutely can and does change us.

You think this is just another day in your life. It's not just another day. 

It's the one day that is given to you today...It's the only gift that you have right now. 

And the only appropriate response is gratefulness. 

~David Steindl-Rast

Numbering Days, Week 7

I go for Treatment #4 today so I wanted to be sure to post before (I didn't end up posting before, I only added a couple pictures after. But I'm backdating it makes sense. Maybe). My view on things is better when I'm feeling better than when I'm not, which is not unique to me or to chemo I don't think. Two weeks ago I struggled so much the day before treatment, but yesterday was good. I started the morning in my Bible, following the Bible-in-a-year plan and we just happened to be in Lamentations 3, which contains some of my very favorite verses, 16-33. God is kind like that to consistently give me words that I need, just when I need them.

Sometimes its just that simple...Be stronger than your excuses. I workout because I can, to build good blood cells, to have sufficient stamina to photograph an upcoming wedding. Find your "why" and put the work in. :)

I don't know how to explain the beauty that is in the ordinary for me these days. I'm just so grateful to be here, a witness to the sun's rays on morning grass, breathing in the late summer air.

Also ordinary....work. Time spent at the office...contributing, helping people, being purposeful. Noteworthy: it felt cool enough to justify my first cup of tea of the season.

I drink nearly a gallon of water a day, since forever. My preferred way has been room-temperature with a squirt of water flavor. After my first treatment I couldn't stand the enhancer taste or the fact that it was tepid. Just like that, I drink water ice cold with lemon. Go figure. Just one of the dozens of ways my body is affected. Aware of this change, Amy sent me a water bottle that stays cold and doesn't sweat.

A fun focus for this week was making preparations for my niece Maddy's bridal shower. Amy did all the planning for the food and decorations and we prepared our house. Since our early 20's, the two of us have been tag-team-hosting holidays, showers, birthdays, events...for our families, our friends, strangers in need...I wouldn't even be able to quantify them. Hundreds in two plus decades? We've had so much fun doing it together...learning from mistakes and successes, adding to our large platter collection along the way. It was extra special to host this one together. 

Family fondue the night before treatment. When we gather around the table for a couple hours together its rarely picture perfect like I had in my head. Life is about constantly adjusting expectations.

 

Numbering Days, Week 6

A win for me this week was that my red and white blood cell counts were at or higher than the levels from last time. I attribute this to prayer and the focus I gave to exercise and almost exclusively eating cell-building foods. When I show up for treatment, the first thing they do is draw blood, then it takes about an hour to process that and get the "all clear" to go forward with treatment. While I don't want to receive chemo, even more so I don't want to get turned away. 

While I waited, I wrote first-day-of-school notes to the kids. I SO love being their mom.

My appointment was in the evening so after school and soccer the kids joined in for Taco Tuesday at cousins. Its such a game changer that Avery can drive them. 

Where there is a will, there's a way. Well, not always, but today my desire and will to watch the girls play soccer won out over the pain and sickness. With my chemo pump still attached, I sat and watched them. I was rewarded by the sweetest hug from Avery. When the team was done with warmups and jogged over to the bench, Avery ran to the opposite side to give me a hug, surprised and delighted to see me there. It made the effort completely worth it!

Someone pointed me to Psalm 31 this week. Its a song of lament. Only if you have been through some tough things can the words resonate. Verse 14 caught me: But I trust in you, O lord; I say, "You are my God." My times are in your hand; My study Bible says This trust is built not only on the experiences recounted but also on the promises of the covenant. The God who has made promises and who has kept them in the past will continue to do so.

Goodness, I can look in the past and see God's faithfulness all over my life and always He has come through on His promises. This means instead of working at worry, I can work at placing my trust in the God who has been faithful and good all my life. That leaves me in peace. Of course, this is not a fix-it-and-forget-it. Sometimes its daily, more often its hour by hour. This I know, He is enough. For me and for you. And He can be trusted.

I was well enough to participate in LobsterFest this past weekend. There are few things that bring me more joy than having my house full of my people. At one point we were all gathered in the kitchen and a dozen different emotions were competing in my heart. Mostly, I was just struck by how blessed I am.

Numbering Days, Week 5

This was an off week, for which we are grateful. I was in a really good place until yesterday, when it all felt very overwhelming. I let small irritations irritate me and unmet expectations unravel me. In my brokenness, I lived into how I was feeling.  The countdown clock was ticking in my head and there was so much I wanted to do while feeling well. 

I'm struggling, knowing how I will feel five minutes into the injection of chemo. I know the work that is required to get through the days that follow. I even hate that term "get through". I would rather be thriving, making a difference.  

But this morning I woke with peace again, ready to face what must be faced. We know how to manage the yuck and we will. Grace will meet me. And I'll get to the other side again. The good days will come.

Last time we went for treatment, my blood counts were low and barely met the threshold for being able to receive treatment. So my focus this week was doing what was in my control to produce good cells, like exercising and eating certain foods such as fish. Even if its not enough to make a difference, its meaningful to me to be making the effort.

Because I've been on this journey a while, I've already worked through mourning the things I can no longer do, such as running, so that now I'm able to be grateful for the things I can do, even if its with five-pound dumbbells and doesn't require shoes.

Nesting is a thing with pregnancy and apparently with cancer. I've had a strong desire to be rid of clutter. Two weeks ago I was able to relocate the two bookshelves that were in the living room. One is in my bedroom and (weirdly) it makes me happy to be surrounded by the books that have helped grow and shape and encourage me over the years. From early in my life, I've been on an imperfect pursuit of becoming the best of who God made me to be. I just need three more lifetimes to get to where I wish I was.

This week, I moved my efforts to our home office, which felt like it was closing in on me. I have a laptop, but still prefer my desktop, where all my photos are located. When I'm on the computer in my office, inevitably, a person or four will wander in. I love this and wanted to make the space conducive to them staying and chatting. 

It was tough sifting through memories brought on by home closing documents, old photos, 1994 charitable giving statement (??), etc. It all told pieces of the sweet life we've had together. So much life.

The first go around, we were advised to make a file of all medical bills so we could keep track of them, since around 40% of them are wrong. It didn't take long to realize what a nearly impossible task that would be. This folder is just a small sampling.

And...we look for ways to spend time together. This is so hard on all of us, but my four are brave and amazing and patient. I'm so grateful for them and for summertime that has afforded us so much togetherness.

So many of you are holding us in your hearts. The love and prayers, messages and songs, handwritten notes mean so much. We feel seen and carried and not alone.