Atomic Bomb

August 20th, 2014

“…And then the atomic bomb dropped. But in the end it was all still ok. Everything was ok. That’s how I know it’s gonna be fine now. Mom’s dreams have been prophetic before. It’s like you’ve already been through a whole war and now there’s this atomic bomb being dropped on you. Your cancer becoming stage four that’s like the atomic bomb. But in the end despite the war and the atomic bomb everything was ok. So I know everything is going to be ok now.”

Bryan’s sister sat on the floor in our living room. I listened as she shared about the dream her mom had and about how strongly they felt it was prophetic.

I folded the laundry on the couch across from her and listened, but my heart was skeptical. I wasn’t skeptical that the dream could be prophetic and used as encouragement and communication from God – I’ve had that happen too much in my own life for me to doubt it.

But as I sat there, with the crisp air of fall coming through the open door behind me, I had a very strong feeling I couldn’t shake. Call it intuition, call it prophetic, call it the spirit of God, whatever you call it, I knew this voice, I knew this burning feeling.

“This isn’t the atomic bomb. You aren’t there yet. That is still to come.”

I kept my mouth closed but my heart was on fire. There was no reason to share my conviction, no reason to throw doubt on the beautiful faith and expectant hope of Tamara and my mother-in-law. But I told Bryan later, because I always tell bryan everything, “I’m not sure that this really is the atomic bomb in your mom’s dream.”

And then we left for DC. It sure felt atomic. Bryan’s treatment was short but it was more intense than I could have imagined. There is much of it that he doesn’t remember. There were drugs. He slept. I remember it all.

And then he got better. Eight months of the same report, “Your tumors are shrinking.” Eight months of reprieve. Eight months of everyone around us celebrating.

But for eight months I held in my hands that feeling I had felt that fall afternoon when Tamara told me my mother-in-laws dream. I held it loosely. Perhaps I was wrong. I wanted to be wrong. I prayed I was wrong and that the treatment we faced last Christmas really was the atomic bomb – the end of a war we won.

This past two weeks as we prepared for this upcoming scan knowing that Bryan had lumps we could feel that we couldn’t feel before, that burning feeling, that whispered thought, that voice that has become familiar returned and whispered… “Now the atomic bomb is going to drop. Be prepared. It’s coming.”

The doctor stepped into the room and introduced herself. Since they change residents every year we had never met her before. She had never met us. She carefully pulled the door closed and blocked out the sound of nurses laughing in the hall.

After the standard how-are-you questions she jumped right in, “So your most recent scan showed that most of your tumors are stable, but two of the one’s we’ve been measuring are growing. I’m sorry to say we will have to discharge you from the study.”

She is nice enough, but not the most confident or encouraging. We stumble through a conversation about what this new information will mean for us. She tells us she will send Bryan’s records to our oncologist in Arizona. She recommends getting into a PD1 trial next. She asks us to wait for the head doctor and leaves.

I knew to expect this, but my chest still feels tight and constricted. I notice the faucet dripping water into the sink in the corner. It makes a steady rhythm on the porcelain. Or is it speeding up? Is it getting faster or is that just my heart beat increasing and playing tricks on my ears. I make an attempt to find my breath.

The doctor comes in, young and sympathetic. “The really good news is that we know you have immune cells in your body that want to fight this cancer. You have the ability within you to fight this cancer. It’s almost like, for whatever reason, these cells just got tired and worn out and couldn’t quite go the distance. But, they can fight this. They just need the right help.”

He is much more encouraging and understanding. He recommends that we definitely pursue other immune therapies and speaks very highly of PD1.

Eventually there is an awkward silence.

“Do you have any other questions?”

Bryan and I look at each other and shake our heads. No, there are no more questions, just the uncomfortable feeling that comes with bad news and an unexpectedly final goodbye.

We hadn’t thought that tumor growth would mean no more follow up with NIH. It hadn’t crossed our minds that this might be our last trip here. Until they said, “discharged.”

It feels weird that this place, which has had such a strong presence in our lives over the past ten months, will no longer be a part of our journey.

When we get to the airport we begin making the calls. We couldn’t bring ourselves to do it at NIH. We weren’t ready. I call my parents and Bryan calls his. We send out a few texts. We call our oncologist in Arizona and schedule an appointment.

This has always been one of the hardest parts of cancer. Telling everyone. In the end, I’m always glad that we have done it. I don’t know what we’d do without the support of others around us and in order to have that support I know I have to invite them into our journey, I have to tell them when things like this happen. But it’s hard. Really hard. Having to be the barer of bad news to those you love when that news involves you…well, it’s hard.

I sit in the stiff airport chair and write an email to our prayer list.

“It’s pretty direct and to the point. Not really your normal style.” Bryan says as he reads it.

The truth is I don’t even know how to process what I’m feeling right now. Even though I went into the appointment sensing that we were about to have an atomic bomb dropped on us, even though my heart was prepared, it doesn’t mean that it doesn’t hurt.

I can’t add a lot of encouragement to my email, because I don’t really have encouragement to give. I don’t feel discouraged, I still have lots of hope, but mostly what I feel is just resigned. Resigned to the the facts.

The facts are what I have in my hands right now. All I have to offer is facts. Bryan’s cancer is growing. There are still treatment options – one of which seems to get pretty good results. We aren’t without hope, but we are still walking a road we wish we weren’t walking.

That’s what I hold in my hands today – fragments of facts.

An atomic bomb just went off and I’m trying to pick up the pieces.

Rejoicing in the journey,
Bethany

 

Never Miss A Post – Receive free updates via RSS or Email

If you like this post please consider buying me a cup of tea (Suggested: $3 a cup)

Teach Me To Pray

August 9th, 2014

My muscles ached with it. My neck was tight with it. My heart felt heavy with it.

As I stepped onto my yoga mat my heart turned with it. Unrest.

The world’s unrest came rushing at me.

I carried it around in my muscles. No, deeper! It’s in my very bones.

There is no peace on earth. There is no rest on earth.

There is unrest in my own life and in my own heart. There is unrest in the relationships around me. But there is unspeakable unrest in the world, and on this day my thoughts turned to the Middle East.

As the rising sun hit my face I longed for Sabbath. For rest. For peace.

Peace for us all.

I pressed my hands together in front of my heart and wondered, “How do I pray for such pressing needs?”

How do I pray for those who are being tortured and persecuted?

“Lord, teach us to pray,” the disciples asked.

My heart asked the same.

Lord, teach me to pray when peace is lacking on all sides.

As my body began to move to the simple rhythm of familiar sun salutations, my heart began to pray.

Our Father…

You are my father. You are their father.

Who art in heaven…

Whether it feels like it or not, you are in heaven, on your throne. You do reign.

Hallowed be your name…

You are set apart and holy. Your ways are not our ways.

Your kingdom come…

Let your kingdom break into their lives, our lives, the whole world.

Your will be done…

Not my will, but your will be done, Lord.

On earth as it is in heaven…

Bridge the vast difference between our world and heaven, and bring your peace here on earth.

Give us this day our daily bread…

Meet their needs. Meet my needs. Meet our needs.

And forgive us our trespasses as we forgive those who trespass against us…

May forgiveness be the wind that carries the oppressed to victory over their oppressors.

And lead us not into temptation, but deliver us from evil…

Plant our feet firmly that we might not fall to temptation or evil.

For thine is the kingdom and the power and the glory forever and ever.

Amen.

Amen.
Rejoicing in the journey,
Bethany

 

Never Miss A Post – Receive free updates via RSS or Email

If you like this post please consider buying me a cup of tea (Suggested: $3 a cup)

And Again I Ask…

August 1st, 2014

We sat at the dinner table. Thaddeus ate his dinner quietly, without the normal battle. It had been a busy day and he was hungry.

“I like this.” He said, and I breathed a sigh of relief. Fighting with him over food is my most dreaded nightly activity.

We ate peacefully for a  few moments. Then Bryan spoke. A simple sentence turned into a tightness in my chest and a knot in my throat. “Feel this.”

I knew right away what he meant.

At Bryan’s last scan they had told him that almost all of his tumors had shrunk by 90%, but there were two in his stomach that were stable. Not growing, but not really shrinking either. The doctors weren’t worried. It was simply information.

Bryan had tried to feel the spots in his stomach while in DC and hadn’t been able to find them. About a week after he got home he found one spot. It was tiny and deep in the stomach. He showed me. I had to dig my fingers into his stomach to feel it, but I felt it. We knew we needed to watch it, but we weren’t worried. As long as it wasn’t growing it didn’t matter. He could live for years and years with a stable tumor that didn’t grow, and didn’t shrink, with no consequences. The problems come when things grow.

I sat up a little straighter on the bench, and reached my hand over preparing to dig my fingers into his flesh as before. I didn’t have to. The lump has right on the surface. Easy to feel. We are no experts, but it seemed it had either moved (unlikely) or grown.

I know Bryan thinks it’s premature for me to share this on the blog. We don’t really know anything yet. We haven’t had another scan, we haven’t seen the oncologist. It could, possibly, maybe, be nothing; but I’ve walked this road long enough to know that is unlikely.

I don’t want to wait to know for certain before we ask people to pray. I don’t want to wait before we beg God ourselves. “You don’t have because you don’t ask.” Right? Well, I don’t want that to be the case here.

So I’m asking. I’m asking all of you to pray with us. Pray hard with us, especially over the next two weeks before Bryan’s next scan.

Exactly two weeks from today we will board a plane and head back to DC to have scans done and meet with Bryan’s doctors.

As I’ve thought of this trip I have felt that God has already been preparing a way in love for us. I haven’t been able to go with Bryan for a scan since January. But, this time we will leave the kids and go together.

We are even going a few days early so that we can see some deeply loved friends from Prague who are there visiting family right now. I have written before about these friends – Jane and Martin and their two little girls.

Martin was diagnosed with a very rare, very aggressive, Leukemia just a few months before Bryan got his diagnosis. We have not been with them since about eight months before any of us started walking this road called cancer, but we have followed each others journey’s from afar. We have prayed. We have celebrated the victories and cried over the set backs.

I have so longed to be with them in person. And now we get to do just that.

God in his grace surely knew what we would need in preparation for this next scan.

Even as we prepare for this scan with more trepidation then the previous one’s my heart is still grateful.

We have a good God who prepares a way for us. We have caring friends who walk beside us, and carry us along. We have had eight months more than we should have had – eight months of shrinking tumors, good health, and wonderful quality of life. Bryan and I have walked through all of the previous steps in this journey in agreement with one another – clearly feeling guided to each treatment that we have tried. We have been hemmed in on every side. Provided for in every way.

stedman_nov2013_023

I remember that today.

“Yet this I call to mind And therefore I have hope: Because of the Lord’s great love we are not consumed, For his compassions never fail. They are new every morning; Great is your faithfulness. I say to myself, “The Lord is my portion; Therefore I will wait for him.” The Lord is good to those whose hope is in him, To the one who seeks him;” – Lamentations 3:21-25

Would you seek him with us? Would you seek him on our behalf? Would you pray, as Martin once told us he prays, “for the Kingdom of God to break in”?

Thank you!

Rejoicing in the journey, Bethany

Never Miss A Post – Receive free updates via RSS or Email

If you like this post please consider buying me a cup of tea (Suggested: $3 a cup)

On Accumulation, Consumerism, and Trust

July 30th, 2014

I sat in the second row. Alone. Sage had been up all night sick. Bryan stayed home with her so that Thad and I could go. So that I could get away, out of the house, out of the situation, into a change of scenery.

My parents were sitting near the front. In the darkness, as the worship music played, I made my way towards them. There weren’t seats in their row so I sat alone.

I almost left. I thought about sitting in the cafe and writing or reading instead of sitting through the sermon after a sleepless night. I’m glad I stayed. There was something I needed to hear. Something the Spirit needed to whisper to me.

“Trust.” The whisper came, “Trust.”

You would think, after all that we have walked through in the last few years, that I would have learned to trust by now, but I haven’t. There is still much in my heart that longs to control rather than trust.

This has become especially evident in my recent desire to accumulate.

A few months ago Bryan and I sat, side-by-side, on our couch. Externally I processed with him a change I noticed in myself. For most of my life I have preferred experiences to possessions. I have held very lightly to things. I have hated shopping (and, no, hate is not too strong a word there) and had little to no interest in ownership.

I shared with Bryan how that was changing. How I have recently understood what is meant by shopping therapy. How I desire, and want to buy, so many things.

As I processed this shift I decided that it was largely due to the fact that our life had been so transient before, with no room for accumulating and holding onto things, and now it was becoming more stable. We are putting down roots so my desire to buy things for the house, things for myself and the children, things for Bryan, makes sense and is only natural. Or so I told myself.

Bryan shared how he didn’t feel that way at all and instead had an even deeper desire to live more simply and purge even more. When he responded this way I got defensive.

That should have been my first warning sign.

The truth is much of my desire to buy things lately is tied to appearances. I want a my house to look nice when people come over. I want to have nice things. I want my children and I to look nice.

The truth is I live in showy Scottsdale and it’s starting to have an effect on me.

I want people to think certain things about me just by looking at me, and one of the things I want them to think is “she has good taste.” For some reason that is important to me. Perhaps it’s the artistic side of me wanting this value that I have for beauty and aesthetics to shine through right away to people. I want to make a certain impression.

I wrote about this when we moved back from Prague. I was shocked by the ways consumerism was on overdrive here and by how much it effected my own heart. I was surprised by how much appearances took on new, heightened, importance to me.

I know that ultimately this desire to control how others see me stems from fear. Fear of how others might judge me, or perceive me, or write me off.

And fear is always tied to a lack of trust.

I lack trust in God and in other people. I don’t trust that God will bring us into community, that people will see past appearances and see our hearts. I want to take matters into my own hands and make myself, my children, my home attractive to others.

Lately a lot of my energy has also gone into wanting to accumulate not just more possessions, but more money. Wanting to build up our saves again. Wanting to have excess. Wishing Bryan made more. Wishing we had money to spend on certain things that I want to do.

Some of those things are good things, built on good desires. Like wanting to get more therapy and equipment for Sage whether or not insurance covers those things. Or wanting to help my sister get out of her terrible job before she has baby number four – wishing I had enough money to pay her large amounts to help me with a few small things, like editing and watching Sage now and then. Or wanting to fly my in-laws down to Arizona for a visit whenever they want. Or wanting to go back to Europe to visit friends there.

These desires require money. Which sets my heart longing to get a job, to make more, to accumulate.

The truth is that I lack trust. I don’t trust God to take care of my daughter and her needs. I don’t trust God to take care of my in-laws and provide for their need to see us more. I don’t trust God to provide a new and better job for my sister. I don’t trust God to care for my friends far away and provide ways for us to stay connected.

Instead of praying about these desires, asking God to provide either through me or through another, I try to take matters into my own hands and stress about not being able to do so.

Instead of trusting the process and that God’s will WILL indeed be worked out in all things, in all ways, at all times, I worry.

I have approached life and money from an attitude of scarcity instead of an attitude of abundance. And there is surely abundance in the kingdom of God! Amen?

Most of all though, it has been the fear of an unknown future that has must tugged my heart onto the path of accumulation.

Our future has felt a little bit more stable the past few months, but I have seen enough to know that your life can be turned upside down in a night. I know all to well how quickly medical bills can pile up (just yesterday we got an unexpected one that far exceeded what we had planned). I know how fast people can be taken away and security can turn into insecurity.

This is what has really been driving my desire to accumulate. Fear. We should accumulate now, while we can, while things are stable, because we have no idea how unstable they could be in the future.

Don’t get me wrong, it’s a good idea to save money, to be prepared for emergencies, but my desire hasn’t just been for a reasonable savings account. It has been for excess. And it has been driven by fear instead of trust.

I have seen God provide in miraculous ways for our finances, for our medical bills, for our income. We have walked through seasons where I cried because we didn’t have enough money to buy butter, only to step outside and have God provide the exact amount for a package of butter. We have been through the unstable income of freelance work and have always been well taken care of – by friends, by family, by God himself.

Oh, how quickly I forget. Oh, how quickly I begin to live with closed fists instead of open hands.

Change my heart God. I don’t want to be sucked into consumerism. I don’t want to have an attitude of scarcity. I want to trust.

Rejoicing in the journey,
Bethany

Never Miss A Post – Receive free updates via RSS or Email

If you like this post please consider buying me a cup of tea (Suggested: $3 a cup)

On Venting and Needing Understanding

July 29th, 2014

Sometimes as a mama to young kids you just need to vent. It’s therapeutic.

You need to call up your girl friend, or your sister, or your mom, or send out a holler to all of your social media mama’s and tell them the horrible thing your toddler just did.

“He colored all over the wall!…With PERMANENT marker!”

“She smeared a chocolate all over the couch.”

“He threw a tantrum right in the middle of the grocery store. Everyone was staring.”

“She flushed a brush down the toilet.”

Oh, yes, we need to share these things. We need to share the sentences we never thought we’d say, the experiences we never thought we’d have, the things we never thought OUR kid would do.

We do it partly to express, to let off steam in a safe place, but there are other reasons we do it too.

We do it to for the encouragement. Like an athlete who is feeling weary and worn and looks to the crowd, because they need to know the crowd believes in them, you look to your crowd.

But, I think mostly we do it for the camaraderie. We need to know we aren’t alone. We need to know that others have been in this same place as we have been. We need to hear that they are in it too, or that they got through it. We need to feel like part of a team.

Or maybe I should say those are reasons why I vent about mama frustrations.

Sometimes I choose to share some of those frustrations on social media, usually Instagram since that feels more like an actual community to me. But sometimes I do it on facebook or twitter too. I do this because I want my social media to be an honest and holistic picture of my life and that means not just sharing the good stuff. It means allowing others to enter into the struggle with me. It’s the same way I approach this blog.

But, lately I’ve run into a problem with sharing and venting, especially online. I’m finding that sharing and venting about Sage doesn’t result in connection and camaraderie and often gets taken in a completely different way than sharing and venting about my son.

The other day I shared about a difficult day I’d had with Sage throwing lots of tantrums. I got lots of very kind responses, but something rubbed me wrong about the way people responded. I couldn’t put my figure on it until I realized how different the responses to my venting where from the responses to my venting with Thad when he was a toddler.

When I shared about a difficult day with Thaddeus I got some encouragement and a few “praying” responses, but mostly I got commissary and even humor.

I got “Oh my goodness that is too funny!”

Or “oh I know! My son did that too!”

Or “ugh I hate when that happens!”

Or “today my daughter did…”

I don’t get that anymore. And I guess I can’t. I mean it would probably be a little weird, and almost hurtful, if my friends with normally developing children tried to say that they know exactly what I’m going through. They don’t. So they don’t say that they do.

Instead I get pity and prayers.

It’s good intentioned, but it’s not really what I want in those moments. I want understanding and camaraderie.

And humor…I could go for some humor.

 

Rejoicing in the journey,
Bethany

 

Never Miss A Post – Receive free updates via RSS or Email

If you like this post please consider buying me a cup of tea (Suggested: $3 a cup)