Life

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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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.

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. 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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Jake in the chemo room

Click here to view the above image on flickr at full size.

As I mentioned yesterday, the cardiologist and oncologist both agreed that my heart was healthy enough to begin treatment, so I had my first round of chemotherapy today.

Moving forward, I will have chemo every other Thursday for a total of four to six months (or eight to twelve actual treatments). The number of treatments will depend on how well my body responds to the drugs, if there are any health-related hiccups, and how much the cancer shrinks throughout the duration.

If for some reason you can’t see the video below, click here to watch it on YouTube.

You can kind of tell from the video that the chemo itself wasn’t to bad at all. I fell asleep toward the end, which was probably a combination of the drugs and just being tired in general. Additionally, the nurses and staff were very, very friendly and helpful, which Libby and I are extremely thankful for and which made the experience practically palatable.

Next Monday I’m having a port installed, so all future blood tests and chemo IV drips, etc. can be done from the port instead of a bunch of random IV insertions in my hands and arms. I’m not really enthusiastic about having it in my chest, but I’m confident that the benefits of having one will outweigh my general wussiness and vague belonephobia.

The next “unknown” is how, when, and if, my body will will react to the chemo drugs. I could be fine for a few days and then have to pack it in for a day or two; I could be really bad tomorrow and then fine for the next two weeks. It’s hard to predict how any particular patient will react during the so-called “chemo hangover,” so we’ll just have to wait and see.

Thanks for your continued love, prayers, and support. Let’s keep on doin’ this.

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Tomorrow (Thursday) morning at 9:30am I will have my first round of chemotherapy.

I will have lots more to say about it soon, including a video of today and tomorrow, but I don’t have the time or energy to get it done tonight. Know your limits, right?

Anyway, my heart is totally fine. The MUGA revealed that it is pumping well within normal capacity (Yay!), so my oncologist sees no problem moving ahead with treatment.

Again, I’ll post more details later, but for now — sleep. At least, I hope.

I leave you with this:

Goodnight.

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Recently, our lives have been defined by Wednesdays.

My first visit to Chest, Infectious Diseases, & Critical Care was on Wednesday January 25, and I have had a doctor appointment on every subsequent Wednesday since. This past Wednesday we found out there might be an issue with my heart. At this coming Wednesday’s appointment with the oncologist, we hope to have enough information regarding my heart and other particulars to schedule my chemotherapy.

The video below documents a portion of the current Wednesday-to-Wednesday activities: Meeting with a cardiologist, scheduling a MUGA scan, making sure things are squared away at the fertility clinic, etc.

If for some reason you can’t see the video below, click here to watch it on YouTube.

The Good News

There are a couple of “good news” items to report:

1) I was able to square everything away at the fertility clinic before the next oncology appointment. In case chemotherapy does negatively impact (or completely destroy) my reproductive capacities, Libby and I have 21 million back-up plans cryogenically frozen in Clive, Iowa.

2) Based on the initial reading of my MUGA, my heart might not be as weak as the echocardiogram report indicated, and could actually be just fine. Because we have yet to go over the analyzed results with the cardiologist (I merely asked for the initial result from a woman in the scan room), I don’t want to publish the actual numbers, but I am optimistic that the news will be much better than we anticipated.

As always, thank you for your continued love, support, and prayers. If you’d like, please join Libby and I in praying that this coming Wednesday is definitive in regards to a treatment start date.

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On January 25, I had an appointment with a doctor at Chest, Infectious Diseases, & Critical Care. This particular appointment represented the third doctor I had seen and the fifth or sixth visit to a medical facility in the previous two months.

In addition to ordering nearly a dozen blood tests and a urine analysis, the doctor had me undergo a routine chest X-ray. After giving the blood and providing the urine, I headed down the hall to radiology and I was in and out of the X-ray room in five minutes.

Two days later, while preparing to give a presentation to a small group of church leaders in northeast Iowa, I received a phone call. The fellow on the phone coolly informed me that the X-ray had some “abnormalities” and that to get a more detailed picture, they would need to do a CT scan. If you read the comprehensive first post, you know the rest.

When we got around to meeting with our oncologist, I asked if it was possible to obtain copies of the images from my X-ray and CT scan and was delighted when he requested a CD for me.

Below you’ll find the image from the infamous X-ray, but first I’d like to show you what a normal chest X-ray looks like.

This image, courtesy of Wikipedia, shows what a normal, healthy chest looks like when it is X-rayed. The heart is clearly visible, with the majority of its mass on the right side of the image (left side of the body). Its also interesting to see the bronchioles, which are tree-branch-like structures in the lungs.

This is the X-ray that was taken of my chest on January 25. Compared to the first image, it is not difficult to understand why the doctor was concerned. All of the structures and organs from the first image are present, but you can also clearly see the sizable mass above my heart and behind my sternum.

I share this mostly because I think it’s fascinating not only to connect an actual image with a memory — on the phone hearing about vague “abnormalities” — but also because I’m still amazed that technology allows me to see an image of the inside of my body. And I’m grateful for the doctor who ordered this test, because it set things swiftly in motion and allowed us to catch the cancer relatively early.

I also have the images from my CT and PET scans. In case you missed it, the CT scan is explained by my cardiothoracic surgeon in this video blog. I’m hesitant to post the images from the PET scan because based on our conversation with the radiation oncologist yesterday, it may look worse than it actually is (he mentioned something about them giving me too much radioactive fluid intravenously). So I’ll hold off on posting the PET scan until we understand more about it.

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.

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