The plan, at least for the moment.

Posted by wendy on October 4, 2010

In his heart a man plans his course,
but the LORD determines his steps.

Proverbs 16:9

Making phone calls to medical establishments to get all the information you need is like trying to get a camel through the eye of a needle. There is a weird mix of hurrying up to make a bunch of phone calls and than waiting around for someone to call you back. Don’t even bother with email because you won’t get a response. Then you have to answer every call you receive because if you do not talk to your contact when they call you back, you will have to play phone tag for another 24 hours before making contact with another real person. There is a sort of rush when the phone rings and you don’t recognize the number. You get nervous wondering who is returning your call and if it will be important. I almost exploded at some poor soul who happened to call my number by accident and was not a doctor’s office. So when you finally make contact with a real live person, you bombard them with questions only to realize how little they know. The ugly side of specialization is that no one knows anything about the big picture, so you have to talk to eight people to figure out how the system works before you realize that talking with six of those people was an exercise in futility

But praise God for the awkward system we have because, despite all the awkwardness, eventually persistence pays off and you can piece enough details together to make a decision. So here is the current plan, though there are still many ifs and uncertainties. Currently we have an appointment this Wednesday at the Sarah Cannon Cancer Center here in Nashville. We’re not expecting anything awesome or groundbreaking, but we are going to ask about a couple trials they have. Then if all goes according to plan, we’ll be flying out sometime between Friday and Sunday to Houston, where we will meet with doctors at MD Anderson on Monday, October 11th. We will make a decision that Monday whether to stay and pursue treatment in Houston or return to Nashville to continue treatment here.

If you want more details about our treatment options, shoot us an email or drop us a phone call. From here on out there is a lot of cancer jargon about different types of trials, classes of chemotherapy drugs, technical sounding side effects, etc. My head is so crammed full of medical jargon that I feel like I’m a med student who has been studying for boards. In short, though, there are no good options, no promising trials, no overwhelmingly positive results anywhere. If Emmett survives this cancer, it will be by the grace of God alone. We know that going into our search, but at the same time we feel pressed to continue in our struggle. We have a peace about moving forward because standing still does not seem like the right course just yet.

On the practical side, pray for the many details of flight and lodging arrangements to work out. Pray peace over us and Quinn as he stays with friends for a few days while we make our decision. Pray for wisdom to make stressful decisions not based on fear or desperation, but on the wisdom that comes from God. Pray for the teacher taking my place in definitely, that she would have a smooth and relatively painless transition. I cannot communicate how much we are held up by your prayers. We are encouraged every day by those prayers. Thank you for staying in this journey with us, no matter how difficult it gets.

All Things Last Minute

Posted by emmett on October 8, 2010

We haven’t updated in a while, due to our flurry of last minute plans. Since posting on monday, a lot has happened. In short: we were in talks with a corporation that flies cancer patients around the country, for free. Those plans fell through, and so we scurried to grab some southwest tickets for our flight this weekend to MD Anderson in Houston for our consult appointment this Monday. On Wednesday, we had an appointment at the Sarah Cannon Cancer Center here in Nashville, where we met with a doctor (via a referral) and discussed other options for treatment, as well as discussing an overall game plan for this cancer. On Thursday, we spent a chill day, running errands, napping, etc, and then due to an innocent accident on Quinns part, had to rush to the Vanderbilt ER because my feeding tube had been ripped out. Needless to say, we’re hoping most of the blood comes out of the shirt I was wearing (it’s the little things we like to stew over!). Thankfully, everything worked out fine, it was an easy painless fix (no needles!) and we’re still on schedule to fly out this weekend.

Here it is now, Friday night, and we are beginning the packing process, which is taking place in two phases. The first phase is that we are packing for our weekend trip, planning to return to Nashville Tuesday, so we’re just taking meds, laptops, a few changes of clothes, etc. We are also packing Quinns stuff for his weekend visit with some friends down the street. The Second Phase, is a little more complicated. We are packing everything we might need for a stay of indeterminable length. We are packing stuff for us, for Quinn, and so forth. All of it is going in the guest room, on the guest room bed. We are packing all the extra medications, numerous changes of clothes, toy trains, toy cars, everything and anything we might need for a temporary move to Houston. It’s mind boggling, and mind blowing, and I feel we are both reaching mental states of overload.

Tomorrow, we are taking a family outing, spending time together before we head separate ways for a few days (hopefully not many more than that). We are packing, cleaning, and mentally preparing for our trip, and what news we may get from the doctors in Houston.

We ask that you would keep us in your prayers this weekend, as we travel, and as we make decisions based on the information we get monday as to where to pursue treatment. My heart is particularly heavy, at the thought of possibly leaving nashville, and our friends, and our church, and our support network. At the same time, I want to gather all the information possible, and choose the best route of treatment possible. We have lots of things to consider, and a lot of things weigh on each of our decisions.

Thank you for continuing to walk with us through this, to pray with us, and to seek God’s wisdom and council in this all. Thank you for the support that each one of you gives to us on a daily basis.

Altars, blemishes, and veils

Posted by wendy on October 10, 2010

She hides her face. It seems to good

for your embrace to find her

and say, “My dove, your voice is sweet,

show me your form your form is lovely”

Your mercy reigns; your mercy comes.

Your mercy falls. It rises with the sun.

from Mercy Reigns by Shane Bernard and Shane Everett on the album Carry Away

I have to admit that it’s a little lonely sitting here in a hotel room in Houston. I wasn’t quite anticipating the loneliness to arrive so quickly, especially before we had decided whether or not to stay. Yet it has come on rather suddenly and with unexpected strength. Strangely, it seems fitting for the state of my walk with God right now. I was listening to the album quoted above most of last week when I was convicted by the opening of this song. It has been a long time since I have experienced intimacy with my savior, and I was struck with a profound grief for what I have been missing. Despite quiet times, prayer, fellowship, and worship, I’ve not experienced the love of God. I purposefully say experience, not feel here because it is not a certain mood or emotion I am looking for. I’ve spent a lot of time grieving that I have neglected cultivating an open and willing heart. Bogged down in details and planning, I’ve prayed for guidance, but my prayers are fleeting, so often filled up with talking instead of listening, doing instead of being, and wishing instead of hoping.

Last week I spent a few mornings reading through the Song of Songs but was still left dry. Even now I would not say as the beloved that “I am faint with love,” for my savior. To be in love with our savior is a strange concept for the modern church. We shrink away from using phrases like that for fear of sounding like any number of religious wackos who elicit emotional responses under false pretenses or dismiss the intellect in favor of emotional manipulation. God is intellectual, but he is not solely an intellect. He is a personality with fully righteous passion, love, anger, jealousy and intellect, and he is to be experienced in that fullness, not in a single encounter, but in a continual purposeful walk. I have not engaged with the personality of God but rather in the practices of religion. Mostly because I’ve been tired and overwhelmed, but that is precisely when I need most the person of my savior.

I remember shortly after we lost Mallory that the only thing I could bring myself to pray was the phrase, “I just need to know that you love me.” I remember praying that phrase over and over because I knew his love is the only meaningful answer to the pain in my life caused by sin when it entered our physical bodies. I find myself in the same position right now, desperately needing to experience the person of God. On the plane today I finally had the chance to listen to an audio copy of The Pursuit of God by A.W. Tozer, and it was beautiful, at least the first three chapters. I’m not quick at processing auditory signals (hence my awkwardness in most social situations), so the experience was somewhat comical as I tried to take notes.

I was particularly captivated by his discussion of the self-life and the inner veil, woven of sin and self that separates us from fully experiencing God. This veil, composed of self-love, self-loathing, self-interest, self-reliance, etc., he describes as being made of living spiritual tissue. When Christ destroyed the veil in the tabernacle, he destroyed the power of sin. But like the painful ripping of physical tissue, this veil must be ripped out of our being in order for us to fully experience God. In my notes I wrote that, “to rip through this veil can be nothing but deeply painful. Yet we can only be spectators as we watch God destroy what we know as our deepest selves. Yet we must urge him on to our own destruction as joyful and willing participants, not in lazy resignation, if we would see the veil truly rent in two. And the joy in the spiritual union will overwhelm the pain of destruction, bringing us somehow mysteriously through this death to find our truest selves at last.” I’m not sure how much of that is a quote of Tozer, but the thoughts are from somewhere towards the end of Chapter three, however poorly paraphrased they may be.

Tozer wrote in Chapter two of Abraham, who, when he received the promised son of the covenant, concentrated his whole person in the life of his son instead of God. Abraham’s love for God’s fulfilled promise endangered Abraham’s love for God himself, and the consequences of Abraham’s uncleansed love for Isaac had the potential to destroy both himself and Isaac. God demanded the exact sacrifice that would destroy the veil in Abraham’s heart. In my notes I wrote (again, no idea how much of this is an actual quote), “We should give up our defenses, come determined to be heard by God, and give up caution in our dealings with God. We must live through the bitterness of Abraham’s experiences before we can experience the richness of God. We will each be brought, even unknowing, to the testing place. Though the sacrifice will look different, there will only be one and the same choice for each of us, to surrender completely to God. Should we fail, the consequences to ourselves would be terrible.”

I was reminded of the summer of 1998 when Emmett and I had been dating for a year. I sat on Sullivan’s Island outside Charleston and I knew two things. First, that I had to end my relationship with Emmett to follow God, and second, that I wanted to marry Emmett. I had been reading the book Hinds Feet on High Places by Hannah Hurnard (if you haven’t read it, go buy it right now), and studying altars. So I built an altar of sand and placed my love for Emmett on it with no promises for what my future would hold. Then I let Emmett go and followed God until I was joyfully reunited with him years later. I find myself faced with that same choice again in my life, to surrender Emmett’s life completely into his hands, and I feel that same familiar ripping sensation in my soul, like my very flesh being torn apart. On the other side of this spiritual death is life and joy and endless peace. Yet the tearing of my soul by a God jealous for my undivided love is a beautifully painful mystery, one to which I find difficulty in surrendering. Yet there is only one choice, lest my uncleansed love destroy us both.

So pray for us as we live in the mystery of God’s sanctification, that we would be wholly surrendered to God, and in being so, find peace and joy and endless love.

“Love is beautiful, but also terrible – terrible in its determination to allow nothing blemished to remain in the beloved.”

Hinds Feet on High Places by Hannah Hurnard

Operation Grapefruit

Posted by wendy on October 11, 2010

Sorry to keep you waiting while we processed. It isn’t so much that we couldn’t make a decision, but more that we like to sit on that decision for a while to make sure it feels right. So here it is.

Most likely we will stay in Houston until Thursday when we will see the doctor again and make arrangements to begin one of the trials they have here. Tentatively we’re going to move forward with a trial though MD Anderson, but it would not require us to stay in Houston. We could travel here for a couple nights every three weeks. This trial is appealing for several reasons, but, just like the other trials, it is nothing revolutionary. The visit, like so many of our other doctor visits, began with the doctor determined to make us fully aware that there is no cure for Emmett’s cancer. I know oncologists do not want to give false hope, but seriously, they are some of the most pessimistic people I’ve ever met. After repeating a lot of the same information that we’ve heard before, we finally got to the interesting part about trials. They have an opening in a trial that, for several reasons, is slightly more appealing than our Nashville options. First, the drug in this trial works in a way that directly affects the cancer cells, not the surrounding blood vessels. Second, the trial is structured so that we can bring the pills back to Nashville and take them there so that we are still living at home. Finally, MD Anderson is in network for our insurance, while the trial in Nashville is at an out of network hospital. Round trip flights to Houston are significantly cheaper than cancer drugs, oddly enough.

Realistically, though, we have only a couple shots at meaningful trials before Emmett no longer qualifies because of the number of previous lines of therapy. There are a couple options at MD Anderson if this trial doesn’t work, and we can easily move into one of those. We are still waiting for some details to fall into place, but this is the tentative plan.

Some ways you can pray. Obviously, we continue to pray for Emmett’s healing. We are comfortable with this decision, knowing that our only hope for healing is in Christ. Pray for us to have peace and joy as we continue to fight what appears to be a hopeless battle. Pray for the many details to fall into place. Several of you have inquired about donating miles or points, however that works. If you are willing and able to donate those points, then we may very well be able to use them at this time. Pray also for minimal side effects from the chemo drugs. Previous drugs have caused constant numbness and tingling in Emmett’s hands and feet. This neuropathy, as it is called, is a potential side effect of this trial drug. Pray that the neuropathy will be minimal and not prevent us pursuing treatment

So there it is. The Plan. Or Operation Grapefruit as we like to call it. You’ll have to ask us about the grapefruit in person, though.

Foiled by a grapefruit

Posted by wendy on October 12, 2010

In our quest to pursue a healthy breakfast, we loaded up on fresh fruit Sunday night at the nearby Kroger. Monday morning as part of breakfast, we split a grapefruit. Come to find out Monday afternoon that you can’t eat grapefruit (or pomegranate, star fruit, or Seville oranges) for 2 weeks before starting the trial. Who knew? They put in a call to the sponsors who replied this morning that they were adamant about this rule. So we head back to Houston in a little less than 2 weeks to actually start the trial. We’re a little bit worn out physically and emotionally. We’re anxious about the cancer continuing to grow unchecked, and we’re generally discouraged overall. So pray for our weary souls, for the elusive miracle we find it difficult to hope for, and for Emmett’s strength to continue so that we can travel back to Houston in 2 weeks.

A little birthday surprise for the man... (ssshhh... don't tell)

Posted by wendy on October 13, 2010

So Emmett turns 31 on October 27th, 2010. I think that is a huge reason to celebrate. I haven’t posted much because I did not know what our treatments would entail, but here’s the plan… Emmett doesn’t know the plan, at least until he reads this blog, but the idea was formulated in secret, so it is kind of a surprise, right?

We are leaving for Houston on Sunday the 24th, and will return just in time for him to start chemo on his actual birthday (bummer!). So, I’m going to host a party on Saturday evening the 23rd for any and all of you to come see Emmett and share some encouragement before we enter the next phase of treatment. The party will crank up at 6 pm and go until I kick you out. I’m thinking that we’ll have a prayer time around 7:30. I will have desserts and beverages, so you have to find your own dinner before coming, but make it a small one. I have a couple new Cook’s Illustrated recipes to catch up on….

Now even if you don’t live in Nashville, here’s how you can be involved. Of course you can fly out here, but do not feel obligated. I would like to collect notes, stories, pictures, prayers, and words of encouragement for Emmett to read on our next trip to Houston. So if you are coming, then please bring those in person. If you cannot come, then mail them to either to the PO Box on the website or to our home address if you know it. Please make sure to mark on the outside that the note is for his birthday.

So I hope to see or hear from you. It’s amazing how thankful you become for each little milestone, and we feel very blessed to celebrate Emmett’s birth together this year, so we’d like for you to join us. Oh, and kids are welcome.

Change of plans # 123,456,789

Posted by wendy on October 18, 2010

Well… The sad news is that it looks like we’re going to have to cancel the party, as we will very likely be heading to Houston on Friday night. It turns out that they do not actually do CT scans on Sunday, though they originally made our appointment for then. Seriously? Yeah. That’s how I feel too.

The good news is that we are tentatively looking at rescheduling the party for Friday, October 29th. Of course, that might be wishful thinking – I mean – who tries to make plans a whole 11 days in advance and expects them to work out? What kind of crazy am I to think I could plan that far in advance. Silly me.

So, in conclusion, circle the plans you penciled in for this Saturday, and draw a big, fat arrow to next Friday. But do it in pencil. Because the next time an oncologist sneezes, I might have to change it.

argh.

Afraid of the Dark

Posted by wendy on October 18, 2010

This past week after returning from Houston without treatment has been very tough emotionally and physically. Emmett is weaker and has been having more constant pain in his liver area. Both bad signs. We have been discouraged by the ridiculously bureaucratic medical maze.

Friday night and into Saturday morning, Emmett and I stayed up to watch movies and enjoy time together without our lovable, but very energetic, son. Emmett spends a lot of nights watching movies or TV shows, and I stay up with him when I can and even sometimes when I shouldn’t. Those are sweet times of snuggling balanced with just enough escapism to keep us from completely losing our minds. Sometime past 2 am, Saturday morning, we finally turned the lights off, but neither one of us wanted to sleep. We held hands, both crying silently and hoping the other person wouldn’t notice. We talked a little, but mostly wept. We wept for each other, for burdens we couldn’t help carry, for our own powerlessness.

Most of you know that it’s at night, lying in bed, when fears and anxieties that were pushed aside by the more pressing demands of a day come rushing back with unexplained force. We avoid these fears as long as possible. Because I have to get up early for work, I often escape the worst torments of these nightly tortures. Often I pass out within minutes of hitting the pillow because I’m so tired. But Emmett’s sleep schedule is more erratic. Since he has to rest more during the day, he lies awake longer at night. Often he watches movies late into the night, but he may still toss and turn for hours before falling asleep. One thing I love about Emmett is that he doesn’t want to medicate himself into oblivion. In the hospital, we found that sleep aids would leave him foggy and confused for days or simply hold him captive to awful dreams (so please don’t suggest any). But the down side is that he has to face his fears every night. He tells me that he wonders at night if he will wake up the next morning. He wonders where the cancer is, what it is doing, and what torments he might be put through next. He weeps to think of Quinn and I being left alone. And on nights when I get to stay up with him, the same terrors also hit me full force. I weep to think that he must wrestle these demons every night before receiving whatever tiny bit of peace sleep offers.

It’s night time right now. I’m headed to bed in a desperate attempt to get some sleep before my early morning. Emmett is settling in for another long night. Pray for us, for the ability to face these demons with grace and love and unfailing hope.

The party is back on

Posted by wendy on October 20, 2010

The party is back on for this Saturday! Whoever said the only thing constant was change? Well, I suppose they were right. The schedule changed again! So we’re not leaving until Sunday, and this time it is set because they have all the approvals they need. So whatever changes they make now, we’re not leaving until Sunday. Hope to see you Saturday at our house. Eat an early dinner and then head over for dessert when you’re finished. Can’t wait to see you all!

The past week

Posted by wendy on October 29, 2010

Ever had one of those weeks where time seems to slip through your fingers? Emmett and I live in these strange stretches where time either seems to stand still or move at light speed. This past week has moved so fast I feel like I haven’t had a chance to catch my breath. In summary, we left Sunday with hearts full of encouragement from Emmett’s birthday party Saturday night, arrived in Houston for a marathon parade of appointments Monday, were approved for the trial, picked up the drugs Tuesday morning, flew home Tuesday night, and started the chemo meds Wednesday morning. Needless to say, we were exhausted.

Aside from one middle of the night vomiting episode early Thursday morning, Emmett seems to be tolerating the trial drug pretty well. He was up and around most of Thursday, though he was tired. You could see the effort it took him to stay active and moving. It is a good thing he’s so stubborn. We used to tease each on occasion about the sacrifices of marriage, like giving each other a hard time about getting out of bed to turn off the light after you’re warm and snuggly or playfully fighting over who has to walk the dog in the morning. We cannot really do that anymore because Emmett is very sensitive about his limitations, and I can be a bit smothering sometimes in my attempt to take care of him. On our return flight, I was carrying my girly purple gym bag full of Emmett’s medications through the airport. A year ago, Emmett would have playfully harassed me about carrying it for me, but this time he got defensive about me carrying the bag for him. There was a brief period before security where we got snitty and impatient with each other, which is very unusual for us. Of course we immediately apologized and made up, but I was surprised how introducing the dynamic of illness or need can drastically alter a relationship. Emmett’s temptation is to refuse help, even to the point of excess or stupidity, in order to prove to himself that he can still do things. My temptation is to smother Emmett to the point of helplessness, at worst eliminating or reducing his motivation to get better. Really in both cases our sin is the same, rooted in a desire to earn or deserve grace, which can result in dehumanizing the people we love most. We need more grace than I expected (no surprise there) to be both patient and caregiver.

Overall, being part of a cancer trial is never a good sign because it means that there are no other good options, but it is slightly more encouraging than just doing more of the same chemos that don’t really work very well. After such a long time in the hospital in February and knowing how advanced Emmett’s cancer was/is, we know we have been incredibly blessed to have such sweet time together already. In one sense, every week Emmett can get out of bed is a sweet miracle that we enjoy. We’re praying for the miracle of healing, of course, that God would work through these drugs in a new and unexpected way, but we still struggle a lot emotionally. Personally, I find myself all over the map, vacillating between a deep, abiding hope and a paralyzing despair. Your prayers and encouragement are such a sweet support to us during this time. Emmett loves the cards, visits, phone calls, text messages, games you play, tweets, etc. He has a lot of time to fill, and each little action, from playing Words with Friends, to dropping in for an unexpected visit or sending a note, means a great deal to him. Thank you so much for loving us so well during this time.

prayer request

Posted by wendy on October 29, 2010

Emmett would appreciate your prayers tonight. He’s very fatigued and had almost constant leakage from his feeding tube, which is both gross and a little scary. Please pray for his body and spirit this evening.