I have been diagnosed with Hodgkin lymphoma

February 16, 2012 · 68 comments

On Wednesday, February 15, I was diagnosed with Hodgkin lymphoma, a cancer characterized by uncontrolled growth of cancerous lymphocytes, a type of white blood cell in the immune system. This diagnosis comes at the conclusion of several months of testing and bouncing between different doctors (all in glorious detail below). I had a biopsy last Thursday, and the results of the pathology on tissue from a large mass in my chest confirm the diagnosis.

But before I continue, please be aware that Hodgkin lymphoma (also called Hodgkin's lymphoma and previously known as Hodgkin's disease) is one of the most curable forms of cancer. Unlike some other cancers, which go into remission when treated, lymphoma often completely disappears.

Anyway, the existence of this blog post testifies to the fact that this is now public knowledge. Up until this point, my friends and family have been regularly informed via email and private video updates, all of which video updates are now publicly available below. Moving forward, this blog will serve as the space for any and all further updates.

This morning I had a couple of heart tests (a 2D echo ultrasound and an EKG) and a PET scan, and tomorrow morning I have a bone marrow biopsy. These tests will help in dictating the appropriate treatment plan. Hodgkin lymphoma is almost always cured by chemotherapy and/or radiation — surgical removal is not an option for this particular type of cancer.

Regardless of the staging (I, II, III, or IV), my oncologist said that he is nearly certain that I will have both chemotherapy and radiation. The chemotherapy could begin as soon as two weeks from now, and will likely last four months (eight treatments, once every two weeks), but the final treatment plan will be determined based on the results of the PET scan and bone marrow biopsy.

So that's where things stand now.

Below is a detailed chronology of how we got from minor, annoying symptoms to the eventual diagnosis of Hodgkin lymphoma, complete with photos and videos.

Chronology

Late November 2011: During the week of Thanksgiving, I woke up in the middle of the night soaked in sweat for several consecutive nights. After the first few sweats, they didn't happen for a day or two, and then they returned. A quick Google search revealed that these "night sweats" can be either totally benign or an indicator of something potentially serious, so at the urging of my wife I scheduled an appointment with my primary physician. Ironically, for several days before the appointment, I was paranoid that I might have cancer — I told my mom, "Whatever you do, don't Google 'night sweats.'"

November 28, 2011: First appointment with primary physician. Some routine blood tests were run, and I shared with the physician that in addition to the night sweats, I lost roughly 15-20 pounds since February 2011. We were unsure if the weight loss was consequential because of my recent foray into running, but we discussed it anyhow.

Early December 2011: The blood tests results all came back negative, prompting my physician to refer me to an endocrinologist, a doctor who specializes in the body's endocrine system.

December 20, 2011: First appointment with the endocrinologist. All of the same information was shared with the endocrinologist, and she had more blood tests ordered, as well as a specific test for my adrenal gland. All of these came back negative.

Late December 2011: Second appointment with the endocrinologist. Because the blood tests and adrenal test came back negative, the doctor ordered a test for Celiac disease (the "gluten-free" disease). For several days, Libby and I lamented over the fact that I may never be able to eat good pizza or drink good beer ever again. Additionally, at this point I noticed an increase in fatigue in daily activities, but wasn't sure if I was being paranoid or not.

Early January 2012: Via telephone, I was informed that the Celiac test came back negative, but the test did reveal that I have slight anemia, a low iron count, and an abnormally high Erythrocyte Sedimentation Rate (ESR). As I understand it, a high ESR indicates that there is inflammation somewhere in the body, but does not indicate where the inflammation is or why it exists. A normal ESR for a male my age is between 15 and 20. Mine was 94. The endocrinologist referred me back to my primary physician.

EKG

January 5, 2012: Second appointment with my primary physician. The physician looked over the results of the endocrinology tests ("Your ESR is one of the highest I have ever seen!"), and ordered a test for mono. I think they did some other blood tests, too, but I can't recall the exact ones. During the same appointment, I had an EKG (pictured at right), although it didn't reveal anything out of the ordinary.

Mid-January 2012: I was informed by phone that the blood tests from my primary physician came back negative. Because of the high ESR and my continued (and, at this point, increasing) symptoms — night sweats, fatigue, etc. — I was referred to a doctor at Chest, Infectious Diseases, Critical Care.

Blood vials

January 25, 2012: Appointment with the doctor at Chest, Infectious Diseases, Critical Care. We (Libby and I) spent at least 45 minutes with the doctor, who peppered us with a litany of questions: "When you were in Tanzania, were you working in the dirt?" "Do you have cats?" "When did you start losing weight?" Both Libby and I were equally encouraged by this particular doctor's apparent eagerness to figure out what was going on. On the day of the appointment, I gave eleven vials of blood (pictured at right), a urine sample, and had an x-ray of my chest.

January 27, 2012: I received a phone call informing me that my chest x-ray revealed "some abnormalities" and so they would like to schedule a CT scan to further investigate. Minor freakout.

Barium sulfate

January 30, 2012: CT scan. The picture is me pouring one of four cups of barium sulfate, a disgusting "orange" "flavored" chalky substance required for the CT scan.

February 1, 2012: Post-CT scan appointment with Chest, Infectious Diseases, Critical Care doctor. The doctor wasted no time in informing Libby and I that the CT scan revealed mediastinal lymphadenopathy, meaning there is a large mass in my chest, which mass the radiologist wrote is "strongly concerning for lymphoma." We shed some tears, asked lots of questions, and were immediately referred to an oncologist for the upcoming Friday.

February 3, 2012: Libby and I met with our oncologist. The oncologist said that he was "over 50% confident" that the diagnosis would be lymphoma, but a biopsy would be necessary for a definitive diagnosis. Other possibilities at the time included testicular cancer, which often shows up in the chest first (weird, huh?), and thymoma. We scheduled an appointment with a cardiothoracic surgeon for the following Wednesday to discuss and schedule the biopsy.

A video blog of this day is available to watch on YouTube by clicking this link.

February 8, 2012: Libby and I met with the cardiothoracic surgeon. From the email I sent to friends family following:

[The biopsy] is an out-patient procedure in which Dr. V. will "go in" under my breastplate to get a sample of tissue for the pathologists to examine (the technical term is "cervical mediastinoscopy"). This is Plan A. If, during the procedure, Dr. V. is not satisfied with the tissue sample or is unable to get a good "look", he'll go to Plan B (to be honest, I'm not entirely certain why he would go to Plan B, but he talked us through it anyway). Plan B is to go in via the side of my chest — this procedure would take place during the same surgery and is slightly more invasive, but not terrible. The surgery will take about an hour or two, depending on Plan A or Plan B, and so long as I don't have excessive bleeding or anything, I should not have to stay overnight.

We were told it would take 2-3 days for the biopsy results to come back, so long as they didn't need a second opinion from Mayo Clinic. However, during the surgery, Dr. V. told Libby that the tissue looked like lymphoma.

A video blog of this day is available to watch on YouTube by clicking this link.

February 9, 2012: Surgery day. As it turned out, Plan B was necessary. I was at the hospital for check-in, pre-surgery, surgery, and recovery from noon until 9:30pm. I have two large scars that are still healing from the procedure. An appointment was scheduled with the oncologist to discuss the pathology results from the biopsy for the following Wednesday.

A video blog of this day is available to watch on YouTube by clicking this link.

February 15, 2012: Libby, my mother, and I met with our oncologist. He gave us the result from the biopsy, which is "Classical Hodgkin Lymphoma." A PET scan, bone marrow biopsy, and EKG were all scheduled, which is where we are today.

Moving Forward and Following Along

As I mentioned earlier, I plan on blogging throughout this process here at JakeBouma.com. There are several ways to keep current with anything I post here:

  1. Subscribe to updates via email by clicking this link. Anything I post here will be delivered to your email inbox the next morning.
  2. Follow me on Twitter and/or friend me on Facebook. Anything I post here I will announce on both Twitter and Facebook.
  3. Subscribe to updates via RSS. If you don't know what RSS is, this option probably doesn't pertain to you. :)
  4. Do it the old-fasioned way — Add JakeBouma.com to your bookmarks and check in regularly for new content.
  5. Any videos I create moving forward can be found on my YouTube page here.

My lovely wife will also be blogging, tweeting, etc. throughout this process. Her blog is called Joyful Girl and she can be found tweeting at @LibbyBouma. I'm sure she'll appreciate your support as much as I will.

Resources

There are tons of great resources for learning more about Hodgkin lymphoma, and although I have only begun to do my own research, I recommend starting with the Hodgkin lymphoma page on the Leukemia Lymphoma Society website. Fun fact: The webpage just mentioned notes that "An estimated 8,830 people living in the United States will be diagnosed with Hodgkin lymphoma in 2011," and as of July 2011, the US population is 311,591,917, which means I am one of the (roughly) 0.0028% of Americans diagnosed with Hodgkin this year.

A Personal Note

The first question people have asked me is "How are you doing?" To be honest, I am doing just fine. Really. In no way do I view this as a matter of life-and-death. I'm prepared for the next several months to substantially suck, but I also completely believe there will be lots of beautiful and redeeming moments — indeed, there already have been. Sure, I'm scared about the treatment and all of the unknowns, but my outlook remains positive. I am surrounded by people near and far — friends, family, my church community, online acquaintances, etc. — who love and care deeply about me and my family. I do not take this blessing for granted. Libby and my family are also doing well — they're troopers, that's for sure.

If you're the praying type, we will covet your prayers in the coming days, weeks, and months. Lord, in your mercy, hear our prayer.

So... here we are. Feel free to connect with me by leaving a comment below, messaging me on Twitter or Facebook, etc. The next week is pretty busy, obviously, but I plan on interacting online as much as is possible and prudent. I welcome any and all questions, comments, lamentations, encouragements, jokes, personal anecdotes, and so on.

Let's do this.

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  • http://twitter.com/cyyork Ryan York

    We all got your back, my brother.  Bring it

    • http://www.jakebouma.com Jake Bouma

      But the question is, will you sponge-wash my back? Bring THAT.

      • http://twitter.com/cyyork Ryan York

        only if it is constitutionally mandated

        • http://www.jakebouma.com Jake Bouma

          Nailed it.

  • http://www.facebook.com/ohxjulie Julie Stecker

    Many, many, many prayers for you as you and your family traverse this new territory. I hope the various social media networks can handle all of the good vibes that are being channeled through them to you right now!

    • http://www.jakebouma.com Jake Bouma

      Haha Thanks, Julie!

  • Kate B

    Jake, our family will be praying for you as you undergo treatment.  I dont know much about Hodgkin lymphoma, but I do have some experience being a young adult with a cancer diagnosis.  It does stun a person and leave one feeling a little more vulnerable.  Im glad to read of your positive outlook.  Youre right that the next months will be no picnic, but there are so many, many lessons to be learned along the way.  

    • http://www.jakebouma.com Jake Bouma

      Thank you so much, Kate. Maybe we can grab coffee sometime in the coming months.

  • Elisabeth Zant

    Jake, we will be praying for you at Eden Lutheran Church in Munising, MI. Also, I was thinking about Greece and Turkey the other day. Good times. 

    • http://www.jakebouma.com Jake Bouma

      Very good times. I was actually thinking of you in a Lutheran-y conversation I was involved in LAST NIGHT. True story. Thank you for the prayers.

  • BrettRWilkes

    Thanks for being open here. Its not something you have to do, but in sharing what youre experiencing like this, youre giving the rest of the world a unique window into the story. Unique, because it lets me see into something I havent ever experienced. 
    I hope youre feeling okay today! Step by step. : )

    • http://www.jakebouma.com Jake Bouma

      Thanks, Brett.

  • Jordan Ketcham

    Jake- I used to work with Shawn Kennedy. I saw your story and I want to wish you the best. I believe that the combination of good docs and your optimistic attitude will see you through this chapter in your life. Knock it out!
    Jordan Ketcham

    • http://www.jakebouma.com Jake Bouma

      I WILL knock it out! Thanks, Jordan.

  • http://www.blackcoffeereflections.com/ Tim Ghali

    Moved by your voice in the post Looks like youll be a part of my Lenten journey this year.  Will look for your updates will be praying for you, Libby, your Mom and Team Bouma.  Grace and strength to you.

    • http://www.jakebouma.com Jake Bouma

      Thanks a bunch, Tim.

  • B-Rad

    Thanks for posting Bouma. Between the cancer shirt and Bouma-lymphoma, Im glad to see you taking this in stride. Therell be some tough days ahead, but your wonderful wife and family are all behind you. The phrase ganbatte doesnt translate well from Japanese, but its basically akin to kick some a$$, Jake. So, do that & keep us posted.

    • http://www.jakebouma.com Jake Bouma

      Thanks for your words, Brad. Ill be sure to kick some a$$ AND keep you posted.

  • Cynnbrown

    Jake, there you go amazing me yet again. Your faith, honesty, and strength are such a blessing to so many! Please know you, Libby and your family are in our prayers always. Thank you for continually shining His light. Blessings, Cynnamon and family

    • http://www.jakebouma.com Jake Bouma

      Thank you, Cynnamon. Thinking of your family often Say hello for me!

  • Rachel Swenson

    Hey Bouma! So sorry to hear about this but glad you have such a great attitude and support group! Prayers being sent your way from Minneapolis.

    • http://www.jakebouma.com Jake Bouma

      Thanks, Rachel!

  • http://twitter.com/rebcah rebecca cahill

    Jabo, I will be watching and praying. Much love.

    • http://www.jakebouma.com Jake Bouma

      Thanks, Reba.

  • Tlougan

    Bouma,
    Sorry to hear about this. We are all here for you and you are most definitely in our prayers. 

    • http://www.jakebouma.com Jake Bouma

      Thanks, Lougs.

  • http://twitter.com/thomasgetchius Tom Getchius

    Jakie Sorry to hear about this diagnosis but Im so pleased to see that youre so positive and welcoming of support and prayers. Love to you and Libby as you venture though treatments. My prayer is that you continue stay strong. 

    Gods blessings to you ~ Tom

    • http://www.jakebouma.com Jake Bouma

      Thank you, Tom!

  • Mcs0728

    Sending thoughts, prayers and good vibes your way. We will be following you along the way.

    • http://www.jakebouma.com Jake Bouma

      Thank you!

  • Donna Yeager

    We will pray for you and your family daily, Jake.  Keep the faith, we pray God will guide all your doctors and make you well.
    Donna Yeager
    WHLC

    • http://www.jakebouma.com Jake Bouma

      Thank you, Donna!

  • Christine (Suckow) Bruner

    Hey Jake, Its been awhile but I saw your fbook post and just read your blog update. Just wanted to tell you that you, your wife and family will be in my prayers. I think its neat that your planning on documenting your journey. Im sure it prove to be helpful not only for you and your family but I know others will find your outlook inspiring. God bless.

    • http://www.jakebouma.com Jake Bouma

      Thank you, Christine!

  • http://www.facebook.com/people/Anne-Williams/707809144 Anne Williams

    Prayer, Prayer and more prayer for you and Libby and the fam.

    • http://www.jakebouma.com Jake Bouma

      You know what I always say P., P., and more P.

  • Dustin

    My sister told me about you today when I was at work.  My initial reaction was shock, but of all the people I know and have met in life, YOU are the one I know who can and will pull through this!  Bouma-Lymphoma  I love it!  Your humor and awesome personality hasnt changed.  All that coupled with your family, friends, prayers, love and support will carry you.  I love reading your blog and look forward to future updates.  I still remember our high school days in the red convertible that we took to get fixed almost every other week ;)  Fun times!  Im thinking of you and sending prayers your way.  All my best to you as you begin this endeavor.  Go get em buddy!  Were all here for you!

    • http://www.jakebouma.com Jake Bouma

      Thanks, Dustin. I appreciate your words. That convertible was a POS, but it was awesome.  :)

  • Kathy Reed

    Scott told me about your post when I was driving home from work today.  My throat ended up in my stomach but then I was calmed knowing that the love our God has for you will sustain you and give you, Libby and your family the strength to carry you through the weeks ahead.  Peace and abundant blessings are my prayers for you. 

    • http://www.jakebouma.com Jake Bouma

      Thank you, Kathy. We appreciate the prayers!

  • Pakane1953

    Jake: I do not know you. I have never met you. But I am with you. In1982, I was diagnosed with stage IV Hodgkins. I was in my mid-20s. Today I am 58-going on 59-and doing well. It is a great journey you are about to go on; the experience is like none other. It has made me realize who I am from my core. I hope it is the same experience for you. As they say in the movies: hang on tight, its going to be a bumpy ride.

    Pam Kane

    • http://www.jakebouma.com Jake Bouma

      I cant tell you how encouraging your comment is. Brought me to tears — in a good way. Thank you. Thank you.

  • Klnelson83

    Its been forever since weve been in contact, but I saw your post on Facebook and wanted to let you know Im sending prayers your way! Fight strong!

    • http://www.facebook.com/klnelson83 Kristin Nelson Soriano

      Sorry, this is Kristin Nelson, by the way :)

      • http://www.jakebouma.com Jake Bouma

        Thank you, Kristin! I will fight. :)

  • Dustin

    My sister told me about this today when I was at work. I
    started reading and at first was completely shocked, but then realized from all
    the people I have met in life, YOU are the one who I know can and will fight
    this like a champion. Bouma-Lymphoma I LOVE it!! Im so happy to
    see you still have your amazing personality and witty humor. I think back to
    our high school days driving around in your red convertible that you had fixed
    every other week ;) and free orange pop from BK. Oh, fun times! Your positive
    outlook combined with your family, friends, love and prayers will carry you. I
    look forward to reading more on your blog. I’m sending my love and prayers your
    way as you start this future endeavor. Go get em buddy! Were all here
    cheering for you on the sideline!

  • Elyse Donhowe

    Listen SmokeStack (remember that nickname?), Im praying for you.
    - Nano

    • http://www.jakebouma.com Jake Bouma

      Thanks, Nano. :)

  • Kelsey Huebsch

    Jake,
    My dad sent me your letter in the Faith E-News update. Our whole family is thinking about you and sending strength to you and your beautiful wife in the months to come.  The Beavers are literally blocks from the churchplease let me or them know if theres anything we can do.
    Take care of yourself,
    Kelsey <3

    • http://www.jakebouma.com Jake Bouma

      Thank you, Kelsey!

  • http://www.facebook.com/people/Philip-Knuth/59201205 Philip Knuth

    Jake, hang in there man.  Thanks for sharing this.  I will continue to check in on your blog to see how youre doing, etc.  I will be thinking of you/praying for you as you go through this awful process.  I know Im a pretty shitty friend as I have kept up with very few people from school, you included, but know that I always regarded you as a person of tremendous faith, strength, and integrity, and you have a pile of people pulling for you, keep that in mind.    

    • http://www.jakebouma.com Jake Bouma

      Thanks, Phil. No apologies necessary, man.

  • http://www.facebook.com/people/Ryan-Lindsley/14802426 Ryan Lindsley

    Jake, 

    Your openness about your new challenge is pretty impressive. Ive never faced cancer, but I have to believe youre approaching it the best way possible. I prayed for you this morning. Stay motivated! 

    Ryan

    • http://www.jakebouma.com Jake Bouma

      Thanks, Ryan Good to hear from another one of the triplets.

  • http://www.facebook.com/profile.php?id=59201261 Ryan Gibbs

    My thoughts and prayers are with you and Libby!

    • http://www.jakebouma.com Jake Bouma

      Thanks, Ryan!

  • Lisasgt

    Sending prayers and hugs for you and Libby!  You are loved!

    • http://www.jakebouma.com Jake Bouma

      Thank you, Lisa!

  • http://www.facebook.com/jami.brieske Jami Brandt Brieske

    Hi Jake,
    I just read about your journey, and I am in shock.  I will be thinking of you and praying for you in the days ahead.  Your strong and beautiful spirit comes through even in just retelling these events.  Gods peace be with you.

    • http://www.jakebouma.com Jake Bouma

      Thank you, Jami!

  • Rpdomeng

    Eliminate as much stress as possible
    Enrich your diet
    Rest relax and meditate focus on healing
    Libby you are so so important at this point at this moment in time

    May God bless you

  • Miranda Kurtt

    If you need someone to shed a tear with, I am really good at that :-). Ill help how ever I can!

    • http://www.jakebouma.com Jake Bouma

      You can be my designated cry buddy.

  • David Fitch

    Dude, just saw this. I have been moved to pray with you in this time. Let us persevere in and thru prayer Blessings

    • http://www.jakebouma.com Jake Bouma

      Thanks, Dr. Fitch. I hope we have the opportunity to actually meet someday.

  • Pamela Vencil

    Jake,
    Our prayers are with you during this difficult time. May you be blessed abundantly during the months to come and may your story bless those around you. 

    • http://www.jakebouma.com Jake Bouma

      Thank you, Pamela.

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