hodgkin lymphoma

Hey everyone. Long time no talk. Let me get you up to speed.

With our oncologists blessing, I had my chemo port removed yesterday. A short video update detailing the experience is below (Don’t worry, you can’t actually “see” anything surgery-related). And if you don’t remember what a port is, feel free read this blog post from March. If you’re unable to see the embedded video, click here to watch it on YouTube.

The occasion of having my port removed is the reason this post is titled “The beginning of the (sort of) end.” While both chemotherapy and radiation treatment behind me, I will continue to have regular check-ins with my oncologist, the next one of which is in November. The worst parts of this whole ordeal are now behind me… all that’s left is the occasional routine examination with some bloodwork, x-rays, etc. As I have mentioned previously, I don’t have cancer any more (it still feels so good to say that), but I’ll always be a cancer patient.

Radiation

All told, I had seventeen individual radiation treatments over the course of 3 1/2 weeks in August. I took very little video during that time, for several reasons. First, each appointment only lasted about 15 minutes from start to finish, with the radiation portion lasting 3 minutes at most, and it was the same every single time. That would make for a pretty boring and repetitive video blog, to say the least. Second, Nate joined me a few times and got lots of great footage of the radiation experience. So while I didn’t post a radiation-centric video here, it will still feature in the documentary.

And finally, the side effects I experienced from radiation were minimal — shockingly minimal when compared to chemo. The skin that was in the radiation field got a little dry and pink, and at times it felt like I had a frog in my throat (totally normal side effect, I was told), but that was it. I received the fewest amount of treatments called for — had I been given 30 treatments, say, the side effects would likely have been worse.

Vacation

During the majority of my chemotherapy treatment, I would often try to mentally escape by imagining myself sitting on a beach with a drink in one hand and a good book in the other. I’m happy to say that this dream is becoming a reality. In October (43 days from now, but who’s counting?), Libby and I are heading to Punta Cana, Dominican Republic for a week of beach-filled rest and relaxation. In addition to having our birthday trip to Las Vegas cancelled this past February, we weren’t able to properly celebrate our one-year wedding anniversary in May. So think of this trip as a Happy Birthday!/Happy Anniversary!/Happy Cancer-Free! mega-celebration. We can’t wait!

Etc.

I’ll continue to post here as we make progress with the documentary, but don’t expect very many more video updates (I’m looking at you, mom). Now that I’m well on the way back to health, I’ll be devoting most of my time and energy into returning to my graduate studies, supporting my wife as she continues hers, and pouring myself into the work that I love.

As always, thanks for your prayer, support, and love. We couldn’t have done this without you!

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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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After a grueling four months of chemotherapy treatment it all came down to yesterday’s meeting with our oncologist to discuss the results of my latest PET scan. Let’s cut to the chase, shall we?

The latest video update is below, and this one’s a doozy, filmed on Nate’s documentary camera.1 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!

So, what next?

About midway through my treatment and again yesterday, our oncologist walked us through the possible treatment options by showing us a Hodgkin lymphoma treatment flowchart, which you can see below (you can click the image to enlarge it).

Hodgkin lymphoma treatment flowchart

After an initial four cycles (eight treatments) of ABVD chemotherapy, there are two options for a person displaying a “complete response” (“CR” on the chart), as presented at the top of the chart: Two more cycles of chemotherapy followed by radiation (“IFRT” on the chart), or moving straight to radiation therapy. I, thank God, will be foregoing more chemo and moving straight into radiation. The justification for doing so was summed up by our oncologist thusly:

  • According to the oncologist, I have had a “rougher time than most” dealing with this particular chemotherapy regimen. Some people “breeze through it” (I’m not really sure how that’s possible or what it would look like), but clearly I have not.
  • The longer that a person endures chemotherapy treatment, the higher the likelihood that complications may arise in the future. Things like the return of different, more agressive forms of cancer in the future. No thank you.

Libby and I will meet with our radiation oncologist for a consultation on July 5, and our hope is that I can postpone radiation for a few weeks until after traveling to New Orleans with high schoolers and adults from our church for the National Youth Gathering. At our initial consult with the radiation oncologist on February 24, we were told a) that my radiation regimen would likely be five consecutive weeks of five-days-a-week treatments and b) that it would be possible to hold off on radiation until after the New Orleans trip.

So if the PET scan revealed a “complete recovery,” why the need for radiation? (I’m sure my dad wasn’t the only one with this question.) Chemotherapy and radiation are two different ways of attacking tumor cells. Chemo is a drug therapy that works via the blood, while radiation is an energy aimed directly at the tumor cells. Because I had a “bulky mass” in my chest, they want to be sure that they are eradicating 100% of the disease, and so radiation will be used in conjunction with chemo. That’s why the title of this post says “essentially” cancer free — the PET scan revealed no disease, but who knows how many stray cancer cells are traipsing through my body.

Recovery

The CBC I had done yesterday showed my highest white blood cell count in several months: 2,300 (the normal range is between 4,000 and 11,000). Two weeks prior it was at 1,600, the lowest number of my entire treatment. Over the next few weeks, as the chemotherapy drugs continue to wear off, my white blood cell count will continue to climb, and my body will continue to heal. This is great news in general, but also specifically for my anal fissures, which wound up becoming — by far — the worst side effect I experienced.2 More white blood cells = more ability for my body to heal itself. Every day a little healthier.

Moving forward

We’re not out of the woods just yet. Radiation isn’t exactly a walk in the park (so I’m told), but there’s no way it can be worse than chemo. Even after radiation is finished, I will continue to be a cancer patient: I’ll have frequent follow-ups with my oncologist, occasional CT scans, etc. for months and years to come.

Additionally, I’ll continue to post updates and video blogs here throughout the next several months, but they may be less frequent (especially in July). I’ll be learning alongside all of you about radiation and its side effects, and it will surely feature prominently in the documentary as well.

I don’t even know how to begin thanking everyone for their love, support, prayers, and encouragement through this process. It was and continues to be an immeasurable source of strength for both Libby and I. Thank you. And speaking of Libby, what an utter gift from God she has been. I am beyond blessed to have such a caring, supportive, selfless, beautiful, and hilarious woman by my side.

Praise God from whom all blessings flow.

Let’s do this.

UPDATE: We’re working on a feature-length documentary about my cancer journey and recovery, titled Let’s Do This: Facing Hodgkin Lymphoma. Read about the documentary here and “like” the page on Facebook to stay up-to-date on the film’s progress.

  1. A huge “thank you” to Dr. Freeman for allowing Nate to film this appointment. It will undoubtedly make the documentary far more powerful than it would have been otherwise. []
  2. In fact, I had to take a break from writing this blog post to go to the bathroom and then immediately take an epsom salt bath. Ugh. []

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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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Cancer & Theology guest blog series

This post is a part of a series featuring an assortment of voices exploring how to think theologically about cancer and those who have it. Read the series introduction or view all posts in the series. UPDATE: The beautifully designed Cancer & Theology e-book includes the original essays as well as three new essays and a new introduction.

I’ve been thinking about this blog post for several weeks now, listening intently to life around me in hopes that I would find some wise words to share. I was listening to a sermon by Pastor Nadia Bolz-Weber wherein she talks about some things people say to comfort those going through difficult times. One of the classics she brilliantly framed was, “When a door closes, God opens a window.” Nadia’s response? “It makes me want to ask exactly where is that window so I can push them the hell out of it.” I shook my fist in the air in affirmation of her perfect response to something I heard far too often during my own journey a few years back.

You see, I am a cancer survivor.

I say that with some level of pride, but mostly as an encouragement to people like Jake and the millions of others facing this disease. My journey with the same disease as Jake began as I was racing through life to finish an undergraduate degree in anticipation of seminary, working full time as a youth and family minister, and raising an amazing son (age 12 at the time), detailing cars on the side to help pay for college, and loving my wife, Lorice, in the in-between moments. I felt like I could do and accomplish anything in those years leading up to my diagnosis.

My journey through cancer began with a lump on my neck, persistent tiredness, fever, aches and pains that gave way to visits to doctors and eventually a specialist. A cadre of other doctors and technicians and a bevy of biopsies and tests led to a surgical biopsy. My wife was the first to hear the news that it didn’t look good from the surgeon and the next day she and I sat at his desk to hear the diagnosis together. Cancer. Hodgkin’s Lymphoma. What began in an individual way quickly grew to include a small community, in fact, a few small communities. That’s what I’ve decided to write about. Cancer as a communal, theological event.

I’ve followed Jake’s blog since his diagnosis. I have to admit, it has stirred some pretty uncomfortable feelings in me. Things I haven’t thought much about since my treatment have rushed back into my mind in both good and bad ways. As I watched Jake’s video blog about losing his hair and ultimately coming to the conclusion that the right thing to do would be to shave his head, I found myself beginning to experience “manly moist eyes” and I wondered what it was about watching Jake’s process for reaching his conclusion that drew out such an emotional response from me. We are, after all, the sum of our parts and some of our parts are, well, hair!

Could it be, I reasoned, that in making the conscious choice to shave my head I was relinquishing some level of control over my circumstance or acknowledging that my disease was bigger than I? Letting go of my hair meant letting go of a piece of me. I decided to do the wise youth ministry thing and sell raffle tickets for the privilege of being the one to shave my head publicly at church. I had done things like kissing a fish to raise money before, so this was no big thing. Still, it was only in the letting go that I found my way into a new understanding of my disease. You see, shaving my head in a community setting, my faith community, reminded me that my family and I were not alone in our walk with cancer.

Can cancer be thought of as a communal event? Can we think about cancer as a communal, theological event? I’d argue yes! (And… no) That’s a terribly Lutheran response, I realize this, but stay with me for an explanation. Yes because the very point of being in community is the mutual care and concern we share with each other. 

I found that while going through chemo treatments, the same type and duration as our friend Jake, my greatest supporters were found in community. Community took different forms for me. There was the community of family and close friends. There was the community of faith found in the congregation to which I belonged. And there was the community of doctors, nurses, technicians and other patients I found during treatment at Gulfcoast Oncology in St. Petersburg, FL (shout out to Dr. Knipe!). Each of these communities walked with me in my healing and in my faith. Each strengthened me in a different way.

I experienced community as family and close friends sat with me in the hospital, doctors offices, and when I could do nothing but sit in silence as they sat with me. My wife became my strength infused by God’s presence to comfort me when I was sick to my stomach of being poked and prodded and stuck with needles. She held me as a surrogate for Christ and gave me hope for a day when we would be finished with cancer. Friends like Erik Mathre laughed with me and even made fun of me (in a good way) to reassure me that I was still normal.

I experienced community through my church as we gathered as God’s people around a call to worship and praise God together. Worship was central to our identity and I cherished being a part of these worship gatherings each week. In this gathering of Christ followers I raised my voice in thanksgiving most weeks, in outrage some weeks. Still, I was surrounded by people who loved and supported me and that gave me strength for the healing journey.

I have enjoyed watching Jake and his wife buying treats for the medical staff before going in for treatment. My wife and I did the same thing! Lutherans and food, what can I say? Is it possible to experience a community, theologically speaking, in the form of doctors, nurses, technicians, and other patients. Yes! I experienced Christ’s hands and feet moving around me during treatments and subsequent visits for fluids and other medications. My physical healing met with emotional and spiritual healing in what could have been a church adorned with IV stands and blood pressure cuffs. I shared in mutual consolation with the other worship attendees, each in their own pew (or treatment chair) and each with a story to share.

Can cancer and communal theology always stand up? No, because not everyone in our communities will be willing to enter into the conversation or journey as it unfolds. I watched other patients around me give up. I watched as they succumbed to the disease for a variety of reasons without any desire to talk to me or caregivers. I watched as families and friends reached out to these patients only to be rejected with a rude rebuff or silence. Still, I suppose even the ones who sit in silent anger or surrender as well as the ones they dismiss live in a kind of community together anyway.

I found another line form Nadia’s sermon helpful here. “When someone says something so vapidly optimistic to you, it’s really about them, it’s about the fact that they simply cannot allow themselves to entertain the finality and pain of death, so instead they turn it into a Precious Moments greeting card.”

I think that’s what is behind most of the unfortunate expressions of consolation offered by our human brothers and sisters created in God’s image. People don’t say these things to intentionally dismiss the pain and suffering of the one with cancer. They don’t say these things truly inspired by God to provide comfort (or at least that’s what I think). They say them because that’s what they’ve heard others say or because they’re own defense mechanisms and rationalizations lead them to say them.

Jake asked his guest bloggers to provide alternatives to the cliche sayings too often uttered. As the blog series has progressed I’ve read some great options, including a take on one of my favorite lines as a pastor of three years. “That sucks.” But, since that one has been addressed, more or less, I can share one of the most valuable things I heard during my illness. “I care about you. How can I pray for you?”

In community we often pray for others, for the sick and dying, for the suffering, for our world, for our church. The most powerful memory for me was that another person would care enough to ask me, ask me specifically, what it was I needed them to pray for on my behalf.

The best community experiences are shared around life’s events, around our stories, and when we care enough to pray intentionally for one another.

Cancer & Theology

The entire Cancer & Theology series is now available as a beautifully designed e-book, featuring a new introduction and three new, e-book-only essays from Adam J. Copeland, Joshua Longbrake, and Greg Syler. It is available exclusively for Amazon Kindle devices and apps (including most smartphones, tablets, and computers) for just $5.99.*

Buy Cancer & Theology [Kindle Edition] | $5.99
(Clicking this button will direct you to Amazon’s website. Your credit card will not be charged.)
*20% of all proceeds from the sale of the e-book will be donated to the Leukemia & Lymphoma Society.

Paul AmlinPaul Amlin is a former professional lay youth worker and currently serves as a pastor at Faith Lutheran Church (ELCA) in Marion, IA. Paul has a passion for finding creative ways to walk with people into discipleship in Christ, and believes in finding the intersection between creative worship, music, and education to create interesting if not unique ways of drawing people into ‘being church’ today. He is a survivor of Hodgkin lymphoma.

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