Timmy in the flesh

We're heading to Houston today for three days of radiation, which is expected to be Levi's final cancer treatment. It's been such a long eight months of this journey that we can hardly believe the end is in sight!

In other news, we recently got to see Timmy Tumor in the flesh! You can see below that he was HUGE. The bottom right of the mass is his kidney for size comparison. This is the inside view, as the tumor was sliced in half before photographing.

This week's radiation treatment will take care of the remaining cancer in Levi's body, a small mass in the lower lobe of his left lung. The doctor explained that these three days of radiation will result in the tumor's complete removal, equivalent to having it surgically removed without the complications. He shouldn't have any side effects except for some coughing three months from now (crazy how the body works!).

He has also started taking the chemo pill again, as he will have to for a year or two in order to prevent the cancer from returning. He is building up the dose very slowly and so far hasn't had the bad side effects that he did before. Pray he can continue to increase the dose to the necessary level without feeling bad. 

And while you're praying, please say a little prayer for Nora who was just diagnosed with flu A today right after we left for the airport. It breaks our hearts to not be able to be with her when she is so sick, but it's also better for Levi to be as far away from the flu as possible. Pray for her healing and Wyatt to stay well so we can return home on Wednesday as scheduled.

Wal-Mart Coffee and Sean Connery

I got some really good news today, and it put to rest a lot of my fears about the future. This morning we met with the surgeon for a follow-up appointment and he told us that the pathology report from surgery showed “clear margins”, meaning that he got all of the cancer. Well, except for the cancer that’s still on my lung. You can’t have your cake and eat it, too, you know. Now I’m just barely cancerous. Woot!

I also had the pleasure of yet another CT scan. For those of you who haven’t received such a golden opportunity, just let me describe it for you. First, you take the shuttle ride to the ROC. It’s actually named the “Radiation Outpatient Center”, but all I can think of any time the shuttle driver (always the same sassy lady who wears gloves with cut-off fingers like she’s expecting to have to break up a brawl between the almost exclusively geriatric and very sick clientele behind her) calls out, “Welcome to the Rock”, is Sean Connery’s voice growling, “Gentlemen, welcome to The Rock” when he and Nic Cage finally break into Alcatraz.

Anyways, once Sean Connery greets you, you enter the ROC and immediately notice that the waiting room is, shall we say, generously proportioned, and that there are a LOT of people waiting for a scan of some sort. Yes, you correctly surmise, you’re going to be here for a while, and dammit, you forgot your book. You beat the old man with whom you had a thrilling conversation on the shuttle about his coffee buying habits at Wal-Mart to the check in desk and pay the price in the form of a hard-core old man stink-eye, then you join the rest of humanity in the waiting room, just one more monkey in the proverbial barrel. That old man was really slow anyways, right? No, you don’t have to feel bad about that.

Next step- the drink. You get to slurp down 32 ounces of radioactive material in your favorite flavor of crystal light while you continue to kick yourself for that forgotten book (you’re at the good part, too!), then they call you back to stick you with another IV (better use the right arm. They already stuck the left one to draw labs this morning) and ask you fun questions about things like your last bowel movement and if you’ve had a fall within the last week. Being a rock climber now for the last 15 years, you always like to answer, “how far?” as you imagine some of the 30+ foot falls you’ve taken when out on the vertical, but the nurse of course never gets your inside joke with yourself and simply repeats the question while peering seriously over the top of those spectacles.

You just thought those questions were personal enough to forever rob you of your dignity, but no, your humiliation is far from complete. Next you’re taken to the dressing room, where you’re ironically robbed of your own clothing (shouldn't it be the undressing room?) and forced into a one-size-fits-all set of clothing that was cut to fit someone easily 200 pounds heavier than you and shaped like a gingerbread man. Then you’re led to a recliner labeled “N3”, which will serve as the location of the final sullying of your soul. Now you are no longer you, but only “N3”. NOW your identity is gone and your humiliation complete and they give you twenty to thirty minutes comfortably ensconced underneath a mandatory warm blanket to contemplate that fact before asking you to pad down the hallway in your brightly colored anti-skid socks to the actual CT machine. You’ve finally made it.

The rest is easy, just lay down on the table and breath in an out as instructed. Oh, and try not to pee yourself when they inject the contrast. It’s going to feel like you’re peeing yourself, but you’re not. Don’t worry.

 Pff…

 So that’s a day in the life. Cancer is death by a thousand cuts, not a mercifully quick stabbing (and yet I still have a sweet scar that looks like I was in a sword fight). Hopefully the death leads to life, though, right?

Hospital Stay 2.0

For our non-Facebook friends and those interested in more details: Levi unexpectedly spent the last two days in the hospital with adrenal fatigue.

After we got home from Houston, Levi went downhill daily with fatigue and nausea/vomiting until he had lost 10 lbs. in a week and couldn't hardly eat or get out of bed. By the time we realized this wasn't normal and made an appointment with his local doctor, he was so lightheaded he could hardly stand, and his blood pressure was extremely low. We made it to the doctor's office but were only there a short time before she sent us directly to the emergency room for fluids and steroids.


It turns out the adrenal tumor Levi had was secreting extra amounts of cortisol, making his "normal" level really high. So when the tumor was removed two weeks ago, he bottomed out on cortisol before his other adrenal gland had time to adjust. The solution is temporary steroids that will increase his cortisol for a couple weeks while his body adjusts to life with only one adrenal gland.

It didn't help things that Levi was also still taking blood pressure medicine that he was prescribed after cancer made his blood pressure high. When the tumor was removed, his blood pressure returned to normal, but since we hadn't been monitoring it at home we didn't realized he shouldn't be taking the medicine anymore.

All that to say, Levi is feeling much better and is back home doing normal life. In fact, he feels the best he has in a very long time! Fingers crossed he continues to feel well after he adds back the chemo pill in another week. We are so grateful for all your prayers and support during the ups and downs of this journey!

P.S. - Levi made it home for the daddy/daughter dance! They both had the best time.

Successful Surgery

We've had a busy few days since surgery, but I'm glad to report it went well! Levi is recovering as well as one might expect from major abdominal surgery, and we were able to leave the hospital today.

Glad Levi's parents and brother have been here with us

Surgery Results

I'll be the first to admit that my jokes about Levi having a c-section were woefully inadequate in describing his procedure. It turns out that surgery to remove a baby that is meant to come out is much easier than removing an organ intended to stay inside your body for life.

In addition to the tumor, the surgeon removed Levi's left adrenal gland, left kidney and some nearby lymph nodes in only three hours. While more was removed than we had hoped for, we were very pleased to hear that the doctor thinks he got all of the cancer in that area and there should be no major long-term effects.

The removed mass was sent off for testing, and the pathology report should return anywhere from 1-5 weeks from now. It will confirm whether or not all the cancer was removed, which will help doctors decided if additional treatment is required.

The incision turned out much larger than we expected

Clothed and walking laps just 2 days after surgery

What's Next

The surgical team opted not to remove the tumor on Levi's left lung due to the complicated nature of such a surgery, so the plan is to do radiation on it when we return to Houston for follow-up appointments six weeks from now. The doctor explained that the high doses of radiation given over the course of three days will be just as successful as surgical removal with only a 10% chance of recurrence. Plus, there are virtually no side effects! 

Levi will also resume his chemo pills in a few weeks after his body has time to heal from surgery. The doctor said they like to continue them for 1-2 years after surgery to make sure any remaining cancer cells are killed and to prevent recurrence. This news is pretty devastating, since the pills have made Levi feel like he has the flu all the time. We are hopeful that the side effects won't be as bad now that the tumor is gone, but only time will tell. 

OKC-turned-HOU friends Catherine & Ryan came to visit in the hospital

Continued Prayer Requests

• A good pathology report that indicates all the cancer around the tumor was removed
• Successful radiation of the lung tumor (to be scheduled first week of March)
• Resolved inflammation of the lymph node near Levi's shoulder, indicating it is indeed benign, as doctors suspect
• Better tolerance of the chemo pills

These sweet church friends came all the way from OK to be with us during and after surgery. So grateful for them!

Surgery Details & A Tumor Shower

We are exhausted after 5 (FIVE!) pre-op appointments today that started at 6:15 a.m., so forgive this brief but practical update about Levi's surgery tomorrow.

His surgery will begin at 7:30 a.m., and it is expected to last 5 or more hours, depending on how invasive it becomes. The plan is to only take out his left adrenal gland along with the tumor, though his left kidney, pancreas, spleen and stomach are all fair game to be affected in some way. Pray with us that only the adrenal gland would have to be removed! The doctors seemed hopeful that this is possible, but they can't tell for sure until they're in there.

Levi will stay in the hospital for 3-4 days, and then we will be in Houston another 3-4 days before he can travel home. Pray with us for the shortest stay possible so he can make it to the daddy daughter dance on Feb. 1! Of course Levi's healing is #1 at the moment, but it would mean so much to both Nora and Levi to make that dance, if even for a short time.

That's all we know for now, so I'll leave you with pictures from the "tumor shower" our church small group threw for us before we left, complete with Target registry! We have the best friends.

Why I Drive

The truth is- and this is the thing that I’ve been afraid to admit even to myself until right now- that I’m afraid to die. It’s not the dying that scares me- no, I’ve made my peace with that- even the pain that it may involve. What scares me is what I’ll miss out on. Walking Nora down the aisle and and lying in a tent with the kids listening to the pitter-patter of the rain and stroking my wife’s hair. How much life will I not get to experience if cancer takes me too early?

And in this fear everything becomes so precious. Every time Nora giggles I just treasure it, because it may be the last time. Every basketball game or family dinner at home together or listening to Wyatt pray- it’s all so precious.

I could die on the operating table two days from now. Or complications a few days after that could take me. Or maybe I’ll beat it this time but it’ll come back with a vengeance years from now and I lose the battle that time. I just can’t escape the reality that this could be it. It was easier early on in my treatment, because there was still lots of time and options left to deal with this, but now all my eggs are pretty much in this basket. And it’s hard not to play out images in my head of things going wrong- my kids growing up with a different father and all kinds of things. If this doesn’t work then I’m going to have to start talking to doctors about how much time I have left.

And this is what keeps me up at night- why I am driving around at two in the morning on a bitter cold night listening to country music I don’t even like.

But it doesn’t always seem so bleak. Sometimes I’m able to believe that even if I do die, things will work out like they should. But that’s a pretty tiny percentage of the time. Increasingly often, I’ve been experiencing this thing called faith. I know, it’s a stupid word that’s been pirated by those who would use it as a a meaningless byword to describe something they don’t understand, and it irritates me even now. It’s such Christianese that I just want to puke when I hear it.

But Doug talked on Sunday about faith and Abraham and I began to actually understand what it means. More specifically, Doug talked about how Abraham had faith in things not yet seen, and it was credited to him as righteousness. So faith is believing something that you shouldn’t. And it occurred to me that there’s a whole long list of stories in the bible of people who have faith in a lot of stupid things. People who believed that God was on their side when they were going to war, even though, if you think about it, the people on the other side were probably saying exactly the same thing. People who believed that God wanted them to possess this certain piece of land even though there were already people on it who weren’t really any worse than the they were. People who believed God would give them babies when, biologically speaking, that really shouldn’t be happening. And on an on, story after story, God seems to be trying to tell us that He really values this faith thing, cheap as the word may have become these days.

And I think that maybe now, sitting up in the middle of the night because I can’t sleep for thinking about all the terrible things that might occur two days from now, God is asking me to believe in stupid things too. He’s asking me to believe that good still happens in a broken world and that, at the end of all of this, there’s more beauty to be found than we can even imagine. He’s asking me to believe that He is for me and that I am loved despite my deepest doubts and that He can see me through even this. He’s asking me to believe that He is so good that one day we’ll look back on this shit world and it won’t even matter that much in comparison to the glory that surrounds us. We’ll be drenched in light and coolness like a summer sunrise, early sunrise just a minute or two before the sun appears.

I think that’s what’s being asked of me, and I sort of believe it. God I hope I get to hear that pitter-patter on the tent one day.

Surgery Time

We have a date! Surgery has been scheduled to remove Levi's tumor on the 24th in Houston. We'll travel there on the 22nd, have several pre-op appointments on the 23rd and then stay in Houston for 1-2 weeks, depending on how Levi is recovering. I'll plan to list specific prayer requests after we meet with the surgeon next week.

In the meantime, I wanted to share an updated meal train signup. My mom will be taking care of the kids while we are gone, and I know it would be helpful for her to not have to plan meals. Thanks so much for blessing her with food while we are all out of our routine.

Sign up here