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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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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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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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Jake's echocardiogram

REMINDER: It is possible to receive all of these updates via email. If you would like to do so, simply click this link and enter your email address. All future updates will be delivered to your inbox.

[Above: A printout from last Thursday’s echocardiogram in which my heart is clearly displayed.]

Yesterday was a big day. Aside from being my 28th birthday, I had an appointment at the fertility clinic and an appointment with our oncologist to discuss test results. Most of this is captured in the video blog embedded below, but I flesh out some details further down in the post.

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

My heart

I could have included much more audio from our time with the oncologist, but one can only watch subtitles for so long, in my opinion. Here’s a bit more information that wasn’t included.

Last Thursday, I had an electrocardiogram and an echocardiogram, and according to the doctors’ records of those tests, my heart is “weak.” Not only is this is abnormal for someone my age, but it’s particularly concerning because in the chemotherapy drug regimen I will receive — ABVD (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine) — the Adriamycin has particularly deleterious effects on the heart.

If you imagine a heart-o-meter that starts out at 100% (totally healthy) and chemo drains the meter to 60%, that’s not a big problem. But if my heart is only fuctioning at 60% for some reason and chemo drains it to 20%, then we’re in for some rather serious potential complications (N.B. These are totally made-up numbers).

Hopefully meeting with the cardiologist will provide some more clarity with regards to all of this.

Fertility

I don’t think I’ve yet shared this on the blog, but chemotherapy often results in infertility for male patients. So Libby and I have begun the process of A) having my sperm tested for fertility and B) sperm banking in case I do in fact become infertile after treatment. That’s why I was at the fertility clinic yesterday — to do the initial testing. I will have to go back soon to do the actual storage part so that we can begin chemo ASAP. Neither Libby nor I had even thought about the prospect of infertility for the few weeks before the biopsy, until we read about it in some lymphoma literature.

Now, there is a possibility that chemo won’t make me infertile and/or that my sperm production will resume a few years down the road, but for the two of us it’s a no-brainer to make this a priority.

Timeline

If, by next Wednesday (when we’re scheduled to meet with the oncologist again), we’re able to get all of our fertility stuff done and the heart issue examined with the cardiologist (not to mention a meeting tomorrow with a radiotherapist), it’s possible that I could begin chemotherapy as early as next Thursday or Friday. The oncologist has already submitted a request to my health insurance for chemo treatment, so as soon as they deem my body ready, I could start.

Afterword

Yesterday was a crazy day to be sure, but it was nevertheless filled with many pockets of joy. For my birthday, Libby gave me the “Okay let’s do this” Marc Johns print to which I linked in the first post, and my buddy Shawn got me an awesome set of neodymium magnets. I was also able to enjoy both lunch and dinner out with Libby and even squeeze in some time with a student. Our church’s Ash Wednesday service was absolutely magnificent and moving — a perfect way to wind down the intensity of the day.

As always, thank you for your continued love, support, and prayers.

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Testing, Testing [+Video]

February 19, 2012 · 2 comments

Drinking barium sulfate

[Above: A picture message I sent to Libby while I was drinking barium sulfate in preparation for my PET scan.]

Here’s another video update for you all.

The clips in this video were recorded on Thursday and Friday of last week, when I had my follow-up tests after being diagnosed with Hodgkin lymphoma. The tests included an electrocardiogram (which I mistakenly call an echocardiogram in the video), an echocardiogram, a PET scan, and a bone marrow biopsy.

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

Yesterday was my lovely wife’s birthday, and we had a wonderful day with one another and with family. We had a lazy brunch at Mimi’s Cafe and then spent pretty much the entire evening playing Wii Sports Resort. (My Mii is handling the whole thing really well, by the way.)

Anyway, we’ll go over the results of all the tests on Wednesday afternoon, so the next few days will be relatively uneventful (I hope). I have a dentist appointment tomorrow morning to make sure that everything is tip-top before I enter into treatment. Otherwise, I hope to get some things taken care of at work and have somewhat normal days. In the meantime, follow me on Twitter.

Thank you for your support. It continues to bring me joy and peace.

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