About a month ago, a couple of coworkers of mine got together to brainstorm some ideas for our church‘s upcoming Advent worship season. We came up with a few exciting ideas, including themed postcards and magnets (like the image above), a three-part skit, beautiful liturgy settings, etc.
Additionally, I (sheepishly) volunteered to compose a song using our theme, “Coming Home.” So that’s exactly what I did.
The words are essentially straight out of Psalm 121, with a few additions. You’re welcome to listen and/or download it as you please. If you can’t see the embedded song below, click this link to listen.
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.
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.
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!
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!
There are two books that are helpful which directly address the question, “Where is God in the face of the suffering and death from cancer?” David Watson’s Fear No Evil and M.R. Thompson’s Cancer and the God of Love. The theses of both these books is that God has already gone before us, experiencing suffering, agony and ultimately death so because of this we need fear no evil. The freeing part of the Christian message is we need not deny sickness and the ultimate questions of why suffering but rather the knowledge that God walks with us and when we can no longer walk God carries us. As C.S. Lewis wrote, the ultimate test of our Christian faith in the face of loss, illness, and death of loved ones is whether we believe God is a Cosmic Sadist or a loving parent. In answering this question, we are reminded that we cannot celebrate the Easter of resurrection and new life until we have passed through the Good Friday of pain and suffering.
Ultimately the theodicy question of why a good God permits suffering and is still all-powerful and -loving is veiled in mystery. Any rush to rational explanations of this paradox reduces God’s mystery to our limited knowledge and explanations which ultimately must fail.
For Christians our theology must be translated into action, deeds, and a life that makes a difference in Christ’s name. It is especially when someone is facing a slow and certain death that deeds of kindness can say more than all the theological truths. Instead of the words, “Can I help?” the more concrete words, “What do you need?” help to empower the ill person to name what would be helpful to them, from bringing food to their family, doing chores around the house, reading poetry, taking their child to school or the doctor. One of the most difficult aspects of being chronically or terminally ill is the loss of control. Where in many cases there is little you can do to wrest the progression of the disease, others can help empower you to still participate in decisions and their implementation about your treatment and life.
For people with terminal cancer the question may often be, “How should I live while I am dying?” One wise friend, whose husband died of cancer, told me her words to her husband were, “Your disease does not change who you are, and you are still the wonderful person you have always been.” On the other hand, Eric Cassell, oncologist at Cornell, wrote that illness is not like a knapsack fastened on to you, but rather it changes everything about you and your world. While it is true that the world of the dying person shrinks and the peripheral matters of life recede, still the essence which makes us who we are is always there. In other words, nothing can alter that we are a child of God, made in God’s image.
These truths should form the heart of the Christian message of hope that we share in the face of the terrible ravages of disease.
Our greatest call, however, is to stand with and by people in their illness. Sometimes in silence, sometimes with comforting words, thereby incarnating the love of Christ for them in all circumstances.
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 Registerarticle, I’m excited for the opportunity to give Hodgkin lymphoma some more exposure and (hopefully) spread a little bit of hope.
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).
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.
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.
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.
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. [↩]
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. [↩]
There is nothing more disruptive, more apocalyptic, in the life of a modern American person than a health scare. It is peculiarly disruptive in America because we Americans seem to believe we have been inoculated against the possibility of disease and death. Until… that is… we get faced with a brutal life-threatening health scare.
And yet when a difficult illness strikes a whole set of activities are set into motion. We have these visits with doctors, we are given options, our lives are set into the motions and the rhythms of the medical industry. We are made aware of how small we are, and how large the medical machine is. And we keep pushing along doing what people are supposed to do when they get cancer or heart disease. It feels much like we’ve been technologized in the midst of this crucial moment in our lives. Is this me they want to do this stuff to?
But I have personally learned that perhaps the best place in American life for God to get through to me and actually open up a space to be heard are these times I am calling “the health scare.” For it is here where we can come to grips with the illusion that we are in control of our lives. We seek God. In the midst of the panic, the sleepless nights, somehow when we lie exhausted and calm down, we can somehow find Him. Just find Him.
But I think doing this is impossible. Impossible, that is, all by oneself.
I have discovered that getting sick is the worst time to isolate yourself because I cannot escape my fear, I cannot make the walk from fear to trust by going into a closet. I need someone to proclaim (and witness) to the gospel, that “Jesus is Lord,” that he is taking the world somewhere, and that I am an intricate peculiar particular part in all that.
This is the profound place of trust that a health crisis can lead me to if I will somehow go there. But I’ve found myself, and have seen other people, managing ourselves out of this moment. We seek to control everything and put up a front. We research endlessly on the internet every little detail of our disease and our treatments. We spend hours trying to deal with this all in our own human strength. We’re going to “fight this thing!” we say. It’s here I can get isolated and go into a spiral. We need people. We need the body of Christ witnessing to the reality of “Jesus is Lord” amidst the machinations of the American medical industry.
Walking through a health crisis alone is, in my opinion, a denial of the resurrection. It is within the “body of Christ” that fellow believers can proclaim the gospel, lay on hands and pray, all to make present the rule and authority of the Reign of Christ over our lives.
And so, crazy as this may seem, we need to nurture these times when we are presented with a “heath scare.” Take the time afforded to slow everything down, seek God, be with proclaimers of the gospel, let the Holy Spirit be present, submit to the anointing with oil as an unction signifying my body is the Lord’s to be sovereign over. Seek that “way” that guides us into trust from fear by the proclamation of the gospel. This is a process. This is a journey. But this, I believe, is the life-changing Kingdom.
There is a place of peace, discovery and God’s power to be found in the valley of the shadow of death. There is a place here to go deeply into the reality of what God is doing in Jesus Christ and His resurrection that is admittedly hidden to most… until, that is, we get sick.
I pray God’s lordship, God’s healing, God’s blessings over all who walking through an illness. May God by His Spirit in Christ sustain Jake, his family, and others for the work to which God has called them that lies ahead.