video blog

Post image for Radiation orientation & other updates [+Video]

Hey everyone. The latest video update is below. If you’re unable to see the embedded video, click here to watch it on YouTube.

As you can see from the video, I’m all set up to start my radiation treatments. The radiation oncologist said I would have between 15 and 20 treatments, and they will begin shortly after I return from a trip with the youth at my church — so, July 24-ish. I’m still waiting to get word from the folks who do the official scheduling.

A few other updates:

  • Libby and I will be interviewed on Iowa Public Radio’s Talk of Iowa with Charity Nebbe this Thursday, July 12 from 10:00 — 11:00am. If you live in Iowa you can listen by tuning in to one of these radio stations (longtime 101.7 FM listener here)1, and it will be streamed online as well. As with the Des Moines Register article, I’m excited for the opportunity to give Hodgkin lymphoma some more exposure and (hopefully) spread a little bit of hope.
  • In case you missed it, Libby and I were interviewed on a show called Right This Minute after the video of us receiving the good news went viral.
  • Thanks again to Mike for taking me up in his Cessna 150. In case you couldn’t tell from the video, I had an absolute blast!

That’s it for now… Apologies for the brevity. Lots to do in preparation for the National Youth Gathering next week!

  1. Mini geek-out: I’ve probably heard 500+ episodes (or episode fragments) of Talk of Iowa over the last several years, and now I get to actually be inside the show. Pretty dang cool. []

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Above: Libby shaves my head in our bathroom. This photo is one of a series taken by our wedding photographer, Joshua Longbrake, for use as promotional images for Let’s Do This: Facing Hodgkin Lymphoma. See below for a link to more photos.

You’ll find the latest video update below. If you’re unable to see the embedded video, click here to watch it on YouTube.

If you don’t mind, please be sure to “like” the video by clicking the thumbs-up while it’s paused. Thanks!

Additional updates

  • I had my eighth chemo treatment this past Friday, and depending on what my next PET scan shows, it could very well have been my last. I’m trying not to get my hopes up too high, but it’s really difficult not to, for several reasons. First, enduring chemo’s side-effects has been maddening, and second, all signs point toward progress: My original symptoms have disappeared (night sweats, etc.) and the tumor on my neck has shrunk enough that it cannot be felt anymore (right before chemo began, you could see it). Our oncologist seems to be quite confident that I won’t need any more chemo; only radiation would remain. But the only way to be sure is to get another PET scan, which is scheduled for Wednesday, June 20. We will review the results with the oncologist that Friday.1
  • As mentioned above, Joshua graciously made the trip from Chicago to Des Moines to spend some time with Libby and I in order to shoot some promotional photos for the documentary. He posted several of the (phenomenal) photos over on his blog. I’d post the rest of them here, but we’ve gotta keep some things “secret” until the documentary is officially released, right? Anyway, “thank you” to Joshua for being willing to take time out of your life to document part of ours.
  • Another huge “thank you” and congratulations to my friend Erik for finishing the Dam to Dam 20K and raising over $1400 along the way — money which will help offset the costs of medical bills, prescriptions, etc. for Libby and I. You can read Erik’s post-race report here. I hope to be healthy enough to run my second 5K in October, right alongside Erik. Libby and I continue to be humbled at the love and support from the people in our lives – it has been and continues to be one of the most unexpected gifts that cancer has brought.
  • Speaking of gifts, this short TED talk is well worth three of your minutes. Warning: It may make your eyes leak.

That’s all I’ve got for now. Thanks as always for your continued prayers and words of encouragement! I just might be through the most difficult part! And stay tuned tomorrow — the esteemed David Fitch is contributing to the Cancer & Theology series.

  1. Although I never posted them, I do have images from my original PET scan. Once I get the images from the next scan, I’ll put together what will surely be a striking before/after image. []

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The latest video update is below. If you’re unable to see the embedded video, click here to watch it on YouTube.

If you don’t mind, please be sure to “like” the video by clicking the thumbs-up while it’s paused. Thanks!

Additional, non-video updates

  • If you live in central Iowa, be sure to pick up a copy of The Des Moines Register this Sunday (May 27) and flip to the Iowa Life section. As I’ve hinted in some of the video blogs (and totally given away in the latest one), the Register is running a story about Libby and I, our journey, this blog, the Let’s Do This documentary, etc., complete with photos and even video (the video will only be available online, of course). In addition to the photographer and reporter being at treatment number six, I’ve done several interviews and they’ve taken both photos and video at my church — I’m excited to see how the whole thing comes together. I know Libby and I will be picking up a copy or five this Sunday!
  • You may recall that the issue of fertility after chemotherapy has been a significant one for Libby and I, and for many others undergoing chemo treatment as well. During our last oncologist appointment, I was asking our doctor how soon after treatment I can get tested for fertility and his response was something along the lines of “You won’t need to. You’ll be totally fertile.” Say what?! From many of the things Libby and I had been told and read, we assumed I would probably be sterile and so responded accordingly. Now, our oncologist reassured us that he would have recommended sperm banking anyway, but we were (and are) still pretty shocked and —obviously — very happy.

    Just to be sure, I did some digging and found this 2008 article published in the Annals of Oncology which says, among other things: “With ABVD [the chemotherapy regimen I am receiving], azoospermia1 was observed in fewer patients, ranging from 0% to 4%. In our cohort, all patients treated with ABVD have preserved spermatogenesis.2” Translation: There is a very good chance Libby and I will be able to conceive children naturally, despite being treated with ABVD chemotherapy. Praise the Lord!
  • In the video, I eloquently allude to the fact that “my butt hurts,” and then hop into an epsom salt bath. I should explain. (Warning: In the interest of full disclosure, this will be TMI for some people, but please recall that I’m trying to be transparent in order to help others who are going through the process.) As you’ve no doubt ascertained by now, one of the side effects of both the chemotherapy itself and the medications I’ve been taking is extreme constipation and other gastrointestinal issues. Well, a side-effect of those side-effects has been unpredictable and at times extreme duress on my lower rectum, which has produced anal fissures (read at your own risk). Essentially, every time I am actually able go to the bathroom is a very painful experience. Lately, the pain subsides rather quickly and returns later in the day to be almost unbearable — hence the epsom salt baths. Libby and I are trying to be proactive about it; we tried to get a referral to a colorectal specialist, but it turns out I’m not allowed to see anyone until after treatment has concluded due to my super-low white blood cell count. Until then, it looks like I’ll be taking a lot of baths.
  • I am scheduled for a second pulmonary function test today, which will give the doctors an indication of how much (if any) the chemotherapy is impacting my lungs. If nothing else, it will be fun to go inside this machine again. Keep praying that my lungs are holding up!

That’s all for now. Thank you for your continued prayers and support! (Oh, and if you haven’t purchased and/or listened to the new John Mayer album yet, what are you waiting for?!)

  1. Via Wikipedia: “Azoospermia is the medical condition of a male not having any measurable level of sperm in his semen.” []
  2. Via Wikipedia, again: “Spermatogenesis is the process by which male primary sperm cells undergo meiosis, and produce a number of cells termed spermatogonia, from which the primary spermatocytes are derived.” []

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The latest video update is below. If you’re unable to see the embedded video, click here to watch it on YouTube.

If you don’t mind, please be sure to “like” the video by clicking the thumbs-up while it’s paused. Thanks!

As I mention in the video, one of the things I find myself struggling with lately is how to balance the continuing documentation of my treatment and all of its side-effects while remaining sensitive to the fact that nobody wants to watch video after video of me complaining and/or sleeping/vomiting/cramping, etc. In fact, during those times the last thing I think to do is reach for the video camera; I’d rather reach for (1) my wife or (2) some form of medication, and not necessarily always in that order.

Truth be told, I am starting to get really annoyed by the whole process. I am actually angered by the mere fact that I have to go in again on Friday (“…but I just started feeling better, damnit!”) to get the next treatment — so much so that the thought of it makes my body respond by becoming nauseous (which, subsequently just makes me angrier). But yet I remain committed to documenting this whole crazy thing, and part of that documentation is the fact that life goes on despite the occasional interruption of chemotherapy and its terribly annoying and sometimes debilitating side effects.

This Friday is treatment number six, a number that seems unbelievable in two totally opposing ways: “It’s already treatment number six?!” and “You’re telling me I have to do this three more times?!” Oscillation between extreme optimism and pessimism is something that having cancer and enduring its treatment has made me uncomfortably familiar with. Again with the How-do-you-document-that-experience-on-film-without-being-a-Debbie-Downer? thing. Sometimes it seems as if the biggest battle is fought in the arena of my mind; the aforementioned oscillation isn’t something that occurs over the course of days, it more frequently happens within the course of a single hour. One minute I’m convinced I’m at 100% and determined to be Really Productive Today and the next I’m hit with a wave of tiredness (a relatively benign side effect, I know) and convinced that Today Totally Sucks.

Thankfully, hope isn’t contingent upon the scale of optimism overwhelmingly outweighing the scale of pessimism; it requires but the most infinitesimal difference. And in the grand scheme of things, hope always manages to win, even if by a hair. That’s why, all optimism/pessimism talk aside: Let’s freaking do this.

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Above: Libby and I share a laugh at the fire while on retreat last weekend.

The latest video update is below. If you’re unable to see the embedded video, click here to watch it on YouTube.

If you don’t mind, please be sure to “like” the video by clicking the thumbs-up while it’s paused. Thanks!

Additional, non-video updates

  • I had heard rumors of this, but it looks like it’s official now: My friend Erik is running the Dam to Dam 20K in early June and is raising money for Libby and I to help cover the cost of our medical bills, prescriptions, etc. His fundraising site is here. I share this not to solicit your donations (though they’re obviously welcome), but to point again to the insane generosity of the people in my life. Erik is working his butt off to train for the event, and he’s decided to tithe 10% of all donations to the Leukemia & Lymphoma Society. Additionally, he says that if three people donate $200, he’ll let me shave his head. This could be fun…
  • The retreat at the farm was utterly fantastic. The video pretty much sums it up — lots of good food, rest, reading, and impromptu disc golf. Thanks again to Brandon and Abbey for hosting us. It was exactly what we needed.
  • As you saw in the video, I had a pulmonary function test using a Plethysmograph on Wednesday. I won’t hear the results until tomorrow, and I’m not entirely sure if this was a “baseline” test or whether they’re able to ascertain problems without having had a test before treatment began. Either way, the following lines from a recent LLS email weren’t very encouraging:

    My 12 rounds of chemotherapy ended in the fall of 2010. Unfortunately, I sustained lung damage from one of the chemotherapy agents and had to spend three weeks in the hospital recovering.

    Three weeks! Here’s to hoping my lungs are in good shape.

That’s all for now. Chemo treatment number five is tomorrow!

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There’s a very real chance that I have made it halfway through my chemotherapy treatment. In the video you’ll hear the doctor explain other treatment path possibilities, but as of right now, I’m cautiously optimistic — there was a smaller tumor at the base of my neck that neither myself or the doctor can feel anymore, which is a pretty good indication that the disease is receding.

The latest video update is below. If you’re unable to see the video embedded below, click here to watch it on YouTube.

And again, if you don’t mind, please be sure to “like” the video by clicking the thumbs-up while it’s paused. Thanks!

Additional, non-video updates

  • The Kickstarter campaign for our documentary has officially ended, and we wound up crushing our original goal of $7,500; the final tally is a staggering $10,410! As Nate said in today’s backer-only email: “Jake and I have a lot of work ahead of us, as a bunch more doors are opening for this project to make it even better, both monetarily (again thanks!) and production-wise.” E.g., I bet you didn’t know that we already have an incredible musician lined up to score the whole documentary, did you? Anyhoo. I’m totally convinced that this documentary is going to do amazing things, so one more time: Thank you. I suppose all that’s left to do is fully recover and, you know, make the actual documentary.
  • This Friday and Saturday, Libby and I are heading to a little farm in NE Iowa for some rest, relaxation, reading, and solitude. Our good friends Brandon and Abbey extended us an unbelievably gracious offer of hosting us for two days at their family’s farmhouse — cooking meals for us, etc., while we get some R&R. Brandon and I have been to this farmhouse several times on spiritual retreats — it’s a place with which I’ve fallen in love, and the location of several of my all-time favorite photographs. My plan for the two days is to eat, pray, converse, and read, though not necessarily in that order. Right now my reading list includes Gravity and Grace by Simone Weil and Every Riven Thing: Poems by Christian Wiman.
  • Speaking of Christian Wiman, if you have 30 minutes to spare, watch this Bill Moyers Interview with Christian Wiman on Poetry, Love, Faith, and Cancer. Wiman is a poet and terminally ill cancer patient, and this interview is nothing short of beautiful. E.g.:

    “One thing that sustained me was not those solitary moments, which I found conducive to despair. What sustained me was the company of other people who believed.”

    Wiman has an essay in The American Scholar from several years ago called Gazing into the Abyss which is also well worth your time.

  • While we’re still speaking of books (we are, aren’t we?), I just recently finished a book of essays by John Jeremiah Sullivan titled Pulphead. Not only did I absolutely love it, but it also happens to be the first book I’ve ever read start-to-finish in e-book form (via Kindle on iPad) — If nothing else, this year’s “Physical books read vs. e-books read” chart in the annual Books I Read post will be a little more interesting.1
  • Here’s the official medical chart with the list of all of the drugs that I receive during a chemotherapy treatment.

Q and A

As I mentioned in the video, I’ll be accepting any questions you might have about this whole cancer process and try to answer them in the next video (or perhaps I’ll create a separate video just for Q&A).

There are a number of ways you can participate: You may leave a comment on the video’s YouTube page; right here on this blog post; by @reply-ing me on Twitter; or by emailing me via this website’s contact form. Don’t be shy; the weirdest and/or most personal questions are probably the best ones.

Have at it.

  1. Particularly astute and/or moderately obsessive readers will recall these words from one month ago: “I’m committing myself to completing [Personae], making it my first start-to-finish cancer read.” Truth be told, I’m only 2/3 of the way through Personae; in addition to Hodgkin lymphoma, I have a condition known colloquially as “Reading ADD,” for which condition I do not apologize. []

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