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.
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.
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.
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 .
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 .
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 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 .
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:
- Subscribe to updates via email by . Anything I post here will be delivered to your email inbox the next morning.
- Follow me on and/or friend me on . Anything I post here I will announce on both Twitter and Facebook.
- Subscribe to updates . If you don't know what RSS is, this option probably doesn't pertain to you. :)
- Do it the old-fasioned way — Add JakeBouma.com to your bookmarks and check in regularly for new content.
- Any videos I create moving forward can be found on .
My lovely wife will also be blogging, tweeting, etc. throughout this process. Her blog is called and she can be found tweeting at . 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 . 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 or , 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.
.
Pingback: