The in-between & chemotherapy, round two [+Video]

March 16, 2012 · 3 comments

I made it through another round of chemo. Two down, six more to go (hopefully).

The corresponding video is over sixteen minutes long, so make sure you're comfortable before you hit play. This particular video contains a few more confessional-style clips, which record my thoughts and emotions at certain points in time. It's important to me that everybody gets a glimpse into what it's like not just to receive the actual treatment, but to be in anticipation of and recovery from said treatment.

If you're unable to see the video embedded below, click here to watch it on Vimeo. Thanks to Erik, by the way, for suggesting that I include the "# days since treatment" subtitles in the videos to help create some sense of chronology.

Additional, non-video updates

  • As of this posting, the Kickstarter campaign is now well over $8,000 and climbing. THANK YOU. But don't think that we're stopping here — there are still 30 days left in the campaign, and our new goal is to surpass $10,000. And so Nate has added a new reward to anybody who donates $100 or more: A copy of the film will be sent as a special-edition DVD with your name attached as the personal donor to a cancer treatment center of your choice. More money raised = more exposure, so keep spreading the word!
  • Speaking of making videos, the previously mentioned Flip video situation has been totally remedied. A wonderful group of folks from my church graciously gifted me a brand new third generation Flip Ultra HD, which I used for the final two or three clips in the video above. In addition to the video camera, Libby and I have received several other lovely gifts in the last several weeks — to the gifters (you know who you are): Thank you. (N.B. This is decidedly not a deplorably cloaked call for more gifts. It's a "thank you" and a "thank you" only.)
  • I had a great lunch and conversation on Tuesday with my friend Brandon. One of the topics discussed was how God is clearly using my transparency in dealing with this disease to impact the lives of others. For whatever yet-unidentified reasons, I am and have been reticent to clearly and decisively articulate this — I guess it's a "growing edge." But I do ardently believe the words of Romans 8:28: "And we know that for those who love God all things work together for good, for those who are called according to his purpose." I mean, just look at this.
  • In my excitement for Sergio De La Pava's A Naked Singularity to (re-)release, I ordered his second book, Personae, which arrived today. I'm committing myself to completing it, making it my first start-to-finish cancer read. From the back cover:

    At issue is what will become of this grand edifice. We built it up and into the sky in the hopes of reaching heaven and now as it crumbles down around us we find that this great distance we thought we’d traveled can close in an instant. So what now? Because a person flung backward by adversity can run away in the direction flung, meekly stay put, or slowly, grudgingly, inch-by-inch until foot-by-foot begin the journey back whence he came to resume the struggle.

    Yeah. Don't quote me on this (actually, go ahead), but I'm convinced that De La Pava will be one of the next literary greats, alongside Wallace, Franzen, Bolaño, et al.

  • Don't forget that the Cancer & Theology series officially launches this coming Monday with some words from the inimitable Tony Jones.

As always, thanks for your continued love, support, and prayer. It's time for me to play with our new iPad.

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Quick updates

March 14, 2012 · 3 comments

I just wanted to provide a few quick updates for you all. The next video blog will probably be posted on Friday while I'm recovering from chemo and watching NCAA basketball games (here's my bracket by the way — go Kentucky!). The footage I have right now is mostly of me saying "OHMYGOSH I feel so great lately" in different ways, so in order not to bore everyone the next video will include round two of chemo, which is tomorrow.

  • As of this moment, our Kickstarter campaign to make a documentary is already at $5,880, which is an astounding 78% of our $7,500 goal. Nate and I would both like to say "thank you" a million times to everyone who has donated and/or helped spread the word. If you've already donated (and there are 95 of you so far), you should've received an email with containing a "thank you" video. You can view that video here.1
  • I peeled off the bandage from my port surgery today. The scar from the incision looks surprisingly good — I guess I was expecting a big bloody mess but you can barely tell it's there. Speaking of my port, here's the X-ray they took immediately after it was implanted. Look at that little guy!

    X-ray of my port
  • This is totally small-talk-ish, but the weather has been really lovely lately, which is great because it means while I'm vegging out in the recliner this weekend, there will be a nice breeze blowing through our apartment. It's the small things, amirite?

More to come later this week. Be sure to follow me on Twitter if you haven't yet. Lost of stuff Libby and I post there doesn't end up on the blog (like this, e.g.).

  1. Some of the Kickstarter updates, like this one, will be "Backer exclusive," which means one has to have donated in some way in order to view the update. [↩]

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Introducing the “Cancer & Theology” guest blog series

March 12, 2012 · 4 comments

Cancer & Theology

It didn't take long from hearing the doctor utter the word "lymphoma" for me to begin reflecting on my cancer theologically — I doubt it takes any cancer patient long, Christian or otherwise. I hold the belief that all of life is one big theological exercise, that our minute-to-minute actions betray a comprehensive and operative theological framework at work either consciously or unconsciously. That we are inherently theological beings suggests that any life crisis — small, medium, or large — equates to a theological crisis.

Now, there's a reason that my Twitter bio says "amateur theologian," and it's not false modesty. Knowing how to swim does not by definition make someone a great swimmer. Rather, becoming a great swimmer takes years of practice, discipline, motivation, apprenticeships and mentorships, etc. And so it is with theology — we're all theologians, but the greatest theologians among us are defined by the same aforementioned qualities.

Which is why I've asked some of the greatest theologians I know to participate as guest bloggers in a new series here on JakeBouma.com straightforwardly titled Cancer & Theology.

The Objectives

The guest bloggers I have assembled (listed below) will be doing what Howard W. Stone and James O. Duke call deliberative theology or deliberative theological reflection. In their book How To Think Theologically, Stone and Duke define deliberative theology thusly:

"Deliberative theology is the understanding of faith that emerges from a process of carefully reflecting upon embedded theological convictions. This sort of reflection is sometimes called second-order theology, in that it follows upon and looks back over the implicit understandings embedded in the life of faith."1

I've specifically requested that the guest bloggers not reflect on my personal experience with cancer, but rather on cancer generally speaking, as a common human (and therefore religious) phenomenon. Should they choose, I've provided them with prompts such as "What is the relationship between cancer and God/Jesus/Holy Spirit?" and "How is God present during the 'process' of cancer (sickness to diagnosis to treatment to recovery)?" and "Can/does God work through medical technology and advances in medicine in general?" These and other questions will be considered by the guest bloggers below over the course of the next several months. This is the first and primary objective.

The second objective of the Cancer & Theology series is to look at what Stone and Duke call embedded theology or first-order theology and examine how embedded theologies relate to individuals' responses to cancer and the people who have it. Think of embedded theology is the theology that we carry with us in our subconscious, or the theology that has not yet been critically examined.

Because it has not been critically examined, embedded theology can reveal itself as immature and even offensive at times. Embedded theology is what leads people to say such things as "When God closes a door, he opens up a window!" and "God doesn't give you anything you can't handle!" In the face of darkness, there is a felt need to fill the cavernous void with the light of theological truth, and so folks pitch out what they know — often and unfortunately the weak, flickering light of embedded theological clichés and platitudes.

Because what do you say when someone tells you he or she has cancer?

The great Stanley Hauerwas says of suffering that it "makes peoples' otherness stand out in strong relief."2 Part of what makes it so easy for folks to offer up theological platitudes is that it (paradoxically) both increases and decreases our relational distance to the other, in this case the cancer patient. It decreases distance by making a sincere attempt to impart a word of grace to the patient. It increases distance by using the platitude as a means of hastily moving beyond the patient's real experience.

So: I have asked the guest bloggers to provide original one- or two-line alternatives to embedded theological platitudes that walk the thin line between the two — increasing and decreasing the distance between the patient — and that are evident of rich, deliberative theological reflection.

This series exists as much for me as it does for you; I hope we're all stretched in new and imaginative ways in how to think theologically about cancer (and, by extension, other illnesses) and those who have it. I'm beyond excited to discover what the guest bloggers below have to contribute.

The Guest Bloggers

I've done my best to pull together an assortment of adroit voices to contribute to this series. At the time of this posting, the folks who will be lending their theological wisdom include, in no particular order:

  • Brian D. McLaren (@brianmclaren): Brian is an author, speaker, activist, blogger, and public theologian who in 2005 was named one of America's 25 most influential evangelicals. He has written a number of books, most recently Naked Spirituality: A Life with God in 12 Simple Words, and one of which books pretty much changed my life.
  • Mike Stavlund (@MikeStavlund): Mike is a writer, blogger, and semi-pro handyman who is part of an innovative emergence Christian community called Common Table. His first book, Force of Will will be published in the spring of 2013. He's also primarily responsible for the huge Jesus tattoo on my forearm.
  • Martin E. Marty: Martin is the Fairfax M. Cone Distinguished Service Professor Emeritus at the University of Chicago Divinity School, where he taught for 35 years and where the Martin Marty Center has since been founded to promote “public religion” endeavors. He writes the “M.E.M.O” column for the Christian Century, on whose staff he has served since 1956. He is also the editor of the fortnightly Context since 1969, and has written over fifty books, most recently Dietrich Bonhoeffer's "Letters and Papers from Prison": A Biography.
  • Abigail Rian Evans: Abigail is scholar-in-residence at the Center for Clinical Bioethics at Georgetown University Medical Center and Charlotte W. Newcombe Professor of Practical Theology Emerita at Princeton Theological Seminary. Her most recent book is Is God Still at the Bedside?: The Medical, Ethical, and Pastoral Issues of Death and Dying.
  • Greg Garrett: Greg is an award-winning Professor of English at Baylor University, Writer-in-Residence at the Episcopal Theological Seminary of the Southwest and at Gladstone's Library in Hawarden, Wales, and a licensed lay preacher based at St. David's Episcopal Church in Austin, Texas. He has written over a dozen critically-acclaimed books of fiction, memoir, translation, and criticism, including Stories from the Edge: A Theology of Grief.
  • Matthew Paul Turner (@JesusNeedsNewPR): Matthew is a popular blogger, speaker, and author of several books including Churched: One Kid's Journey Toward God Despite a Holy Mess.
  • David Fitch (@fitchest): David is a bi-vocational pastor at Life on the Vine and the B.R. Lindner Chair of Evangelical Theology at Northern Seminary. He blogs at Reclaiming the Mission and has written several books, including The Great Giveaway: Reclaiming the Mission of the Church from Big Business, Parachurch Organizations, Psychotherapy, Consumer Capitalism, and Other Modern Maladies.
  • Tony Jones (@jonestony): Tony is theologian-in-residence at Solomon’s Porch in Minneapolis and an adjunct professor at Fuller Theological Seminary and at Andover Newton Theological School. He's an ardent blogger who has written many books, most recently The Church Is Flat: The Relational Ecclesiology of the Emerging Church Movement.
  • Carol Howard Merritt (@CarolHoward): Carol is a pastor at Western Presbyterian Church, an intergenerational congregation in Washington, D.C. She writes for the Huffington Post and for Christian Century's Tribal Church blog and
    has written several books, including Reframing Hope: Vital Ministry in a New Generation.
  • Andrew Root (@RootAndrew): Andy is in the Olson Baalson chair as associate professor of youth and family ministry at Luther Seminary in St. Paul, MN. He has written several books, including The Promise of Despair: The Way of the Cross as the Way of the Church (about which I raved) and most recently The Theological Turn in Youth Ministry (with Kenda Creasy Dean).
  • Paul Amlin (@p_amlin): Paul is a former lay youth worker and currently serves as a pastor at Faith Lutheran Church in Marion, IA. He is a survivor of Hodgkin lymphoma.
  • Nate Frambach (@nframbach): Nate is an ordained minister in the ELCA and is Professor of Youth, Culture & Mission at Wartburg Theological Seminary in Dubuque, Iowa. He and is the author of Emerging Ministry: Being Church Today and a contributor to The Hyphenateds: How Emergence Christianity is Re-Traditioning Mainline Practices.
  • Adam Walker Cleaveland (@adamwc): Adam is an Associate Pastor at First Presbyterian Church in Ashland, OR. He has been blogging at Pomomusings since August 2003 and is a contributor to the book An Emergent Manifesto of Hope.

The Schedule

Starting one week from today there will be a new post in the series, and the series will continue each subsequent Monday until the list of guest bloggers is exhausted — well into June.

Cancer and Theology kicks off next Monday, March 19 with a post from Tony Jones.

Finally, as a bonus, here's a embarrassing photo of Tony and I from 2005 — Embarrassing not because of Tony, but because of my garish goatee and non-ironic Latin t-shirt.

  1. Stone, Howard and James Duke. How To Think Theologically. Minneapolis, MN: Fortress Press, 2006. 16. [↩]
  2. Hauerwas, Stanley. Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church. Notre Dame, Indiana: University of Notre Dame Press, 1986. 25. Sadly, Stanley declined to participate as a guest blogger in this series. On the flip side, it was really cool to actually hear back from him. [↩]

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Week one and lost footage [+Video]

March 10, 2012 · 2 comments

In the previous video update, I mentioned that the Flip camera I had been using died. Well, it's still dead (read: won't power on), but with only a few prayers offered the Patron Saint of Videography, I managed to extract the videos that were on it. Thus the "lost footage" reference in this post's title. Since that camera is in disrepair, I've been recording footage with a loaner camera for the past week. So: All is good on the camera front.

Lost footage included, the video weighs in at just under 12 minutes, so make sure you're comfortable before you push play. Also, minutes 7:12 — 9:19 are pretty much a non-stop look at my port being accessed to draw blood for the first time. Feel free to skip over that if it grosses you out (but it really is pretty cool).

If you're unable to see the video embedded below, click here to watch it on YouTube.

Being a cancer patient makes me (and by extension, Libby) a student of my disease and its side effects by default. About "chemo brain," which I reference in the video, the American Cancer Society writes:

For years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they sometimes notice before, during, and after chemotherapy. Even though its exact cause isn’t always known, this mental fog is commonly called “chemo brain.”

And:

For most people, chemo brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them may not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking.

If you're following along with these blog posts and video updates, I recommend reading the whole article and then comparing the bullet points under "What is chemo brain" with the section in the above video starting at 01:23. You'll see what I'm getting at.

In other news, we have already surpassed 50% of our goal for the Let's Do This documentary on the Kickstarter page. Thanks to everyone who has already contributed, and please continue to get the word out!

I can only echo what Nathan said in a comment on the previous post:

I have to say that I am astounded by the generosity of our backers. Truly awesome people, every one of you, despite how much you money you donated.

Also, great thanks to anyone who shares this post or even talks about it with a friend. Your interest in the project really drives me to deliver the best possible film that we can make.

Agreed. Onward. Ahead. Let's do this.

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We’re making a documentary (And we need your help) #LetsDoThisFilm

March 8, 2012 · 2 comments

One of the things that has kept me excited in the past few weeks is that what started as me simply video-blogging my way through this journey has turned into something much bigger.

We're making a feature-length documentary called Let's Do This: Facing Hodgkin Lymphoma.

Nathan Matta, the documentarian/filmmaker, was a high school classmate of mine who made his first film, True Words, in high school — starring yours truly. Since then, Nathan has gone on to graduate from the University of Iowa with a degree in cinema production and currently does work in the Des Moines area primarily as a media producer for The AgriBusiness Report TV segment for a local NBC affiliate. Basically, he knows what he's doing.

And Nathan can make this documentary far more legitimate than I ever could on my own.

If you want some proof, check out the teaser trailer that Nathan put together below:

The Campaign

Nathan and I have set up a Kickstarter campaign with the goal of raising $7500 to cover some of the costs of producing a feature-length documentary.

Our goal is to raise $7500, but it will only be funded if that amount is reached by Monday, April 16. If we fall short, backers will receive their money back and we will receive nothing. If, however, we receive more than $7500 in support, any additional money will be used for the production of the film.

In short: This Kickstarter campaign exists solely to fund the production of the documentary; no money raised will be personally used by Jake, Libby, or Nathan for any reason. We are surrounded by family and friends who are willing to help us out financially and relationally as we continue through treatment and into recovery. I just want to be clear that your support of this project is just that — support of this project.

Here's How You Can Help

The first way you can help is to become a backer of the project on Kickstarter. Click this link to the official Kickstarter project and look at the Pledge levels on the right-hand side of the page. You can donate any amount (everything helps!), any any donation of $10 or more comes with the option of receiving a "reward": Digital download of the completed film, DVD, Blu-ray, signed poster, your name in the credits, etc. As of the time of this posting, we've already raised nearly $2000 — 25% of our goal!

The second way you can help is by getting word out about this project. Click the Facebook "like" button on the Kickstarter page, "Like" the official Let's Do This Facebook page, post a link to the Kickstarter page on your Facebook, Twitter, Pinterest, whatever (As a side note, feel free to make liberal use of the #LetsDoThisFilm hashtag on your social networks, as it is the "official" hashtag of the project). You can link to this post, to the Kickstarter page, or whatever. We just want to continue getting "buzz" around this project so that it can have as big an impact as possible. As we say on the Kickstarter page:

The film aims to provide hope for patients, families, and friends working their way through cancer diagnosis, treatment, and recovery.

In many ways, I see this as a major opportunity to minister to people known and unknown who find themselves in the middle of what can be a terrifying journey. While I don't believe God is responsible for my cancer, I do believe that God is responsible for opening an opportunity to share my story (and, hopefully, God's story) with people across the country and the world.

We're not sure exactly where this will take us, but we're hoping it ends up having an impact much larger than we can dream.

But it starts with your help. Will you join us?

Let's do this.

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I’ve been port-ified / Chemo side effects [+Video]

March 6, 2012 · 4 comments

It's been just about six days since I received my first chemo treatment, and so far the side effects have been tolerable, especially considering all of the possible side effects from ABVD chemotherapy treatment. More on that further down the post.

Yesterday morning I had a port installed on the right side of my chest. The video below shows a brief before and after of the day's events. I would have recorded/uploaded much more, but the Flip camera I've been using to record these videos died (don't worry, I've acquired a borrowed Flip for the time being).

Also, you may want to think twice about watching this particular video if you can't handle seeing fresh wounds and/or bare male chests.

If you're unable to see the video embedded below, click here to watch it on YouTube.

To be clear, the way the port works is by creating an permanent access point into the veins by way of a catheter (see image below). Now any time that I need to have something injected intravenously — including chemo — they can just use the port. No more random injection holes on my arms and hands!

How the PowerPort works

As for the side effects, the only "major" one I have experienced so far is having an extremely sore mouth, to which I allude in the video. Having a sore mouth and/or sores in the mouth is a very common side effect of chemo, but that doesn't make it any less bearable. Libby and I are doing our best to keep the pain in check with cough drops, salt-water rinses, tea-drinking, etc. — it doesn't totally wipe me out, but it has come close a few times (I probably cursed once or twice — Sorry, mom!). I'm hoping that the sore mouth is cyclical, that is, that it subsides in the next day or two and I only have to put up with it a few days every chemo cycle. But for now, we just wait and see what happens, I guess.

I've also been dealing with constipation; it's another common side effect but is a bit more "manageable" than having a sore mouth. One of the more peculiar side effects comes from the drug Vinblastine — numbness/tingling in the hands and/or feet. For me, this has manifested itself in just the tips of my thumbs being numb for the past couple of days. Strange stuff.

Speaking of chemo side effects, I am reminded of a passage from The Emperor of All Maladies: A Biography of Cancer.1 Author Siddhartha Mukherjee writes the following in a section describing the history of chemotherapy treatment:

But having tasted the success of high-dose chemotherapy, many oncologists could not scale back their optimism: What if even VAMP had not been intensive enough? What if a chemotherapy regimen could be muscled up further, pushed closer to the brink of tolerability?2

Mukherjee goes on to describe Donald Pinkel's then-controversial efforts to do just that — push chemotherapy closer to the brink of intolerability for the patient in order to rid the body of cancer. I find it interesting that the history of chemotherapy is defined by seeing just how much patients are able to tolerate in terms of side effects.

Let's just say that I'm glad doctors and researchers have made significant advances in chemotherapy treatment in the last 50 years. I don't even want to imagine having to endure one of the early chemo cocktails.

Okay, I'm done. Thanks for your continued love, prayers, and support. Let's keep on doin' this.

  1. I actually picked this Pulitzer Prize-winning book up last year at a Borders Books firesale out of sheer curiosity. I had no idea its contents would come in handy only a short while later. [↩]
  2. Mukherjee, Siddhartha. The Emperor of All Maladies: A Biography of Cancer. New York: Scribner, 2011. 166-167. [↩]

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