Over the next few months, I will share a series of journal entries I wrote in 2015 describing my experience with lymphoma and my journey to a cure. Although these posts were originally intended to keep friends and family updated on my progress, I was surprised how many people appreciated and genuinely enjoyed reading about the experience–not because they were happy to see me go through it, but because they found my approach entertaining, educational, and inspiring. Many of these same people encouraged me to share my writing with a wider audience. And so I am.
Spoiler Alert: Not to ruin the big surprise ending or anything, but I survived. You now have the advantage of knowing that going in. At the time, I didn’t.
AN UNEXPECTED JOURNEY
by Rob Sullivan – March 8, 2015 at 9:40pm
There’s nothing I love more than throwing on a backpack and jumping on a plane with little more than a starting point and a few vague ideas to guide me. In many ways, the ultimate freedom is being able to board a train in a far away country with no particular destination in mind and no idea where I’ll be sleeping that night. I thrive on adventures like that. Some of my most memorable experiences started as spontaneous, unplanned adventures.
But not all journeys are like that.
Over the past few weeks I’ve begun a journey unlike anything I’ve ever experienced. It’s not an adventure I planned. Nor is it one I’d share—under ideal circumstances—beyond immediate family and a few close friends. But these aren’t ideal circumstances. And keeping this journey a closely guarded secret isn’t an option I’ve been given.
Like many people, I am not a fan of the over-sharing that often occurs on Facebook. I don’t feel a pressing need to know what appetizer someone ordered or when someone else decided it was time to rearrange a sock drawer. What I do enjoy is seeing life’s many milestones and seizing the opportunity to send a word of congratulations or support.
If you are a person who prefers to keep it light with pictures of puppies, people, and parties while choosing to ignore the not-so-bright experiences that mark many of our journeys, I invite you to stop reading now. There is no judgment in these words—simply a recognition that not every post is for everyone and fair warning for what follows. Remember, no one is forcing you to read this.
The Journey Begins
Even though it isn’t technically accurate, I mark Feb. 3, 2015 as the start of my current journey. On that night and the one that followed, I had difficulty sleeping because my chest hurt. Although the thought crossed my mind, I knew intuitively it wasn’t a heart attack. Instead, I convinced myself that I had pulled a muscle in my chest doing plank pose at the gym. After two nights, the discomfort disappeared so it seemed my assessment was accurate.
The following week, on Wednesday, Feb. 11, I awoke feeling as if someone had karate chopped me in the throat just below my Adam’s apple. Since the pressure wasn’t constant—and my throat didn’t actually hurt—I didn’t give it too much attention. However, the following night, Stephanie, a French couchsurfer in town from Vancouver, and I went to see a show in one of the theaters at Second City. During the performance, the pressure in my throat returned.
As I sat there watching the show, I massaged my neck and discovered an egg yolk sized swelling immediately above my right collar bone. Having had swollen glands before, I wasn’t overly concerned except that this wasn’t accompanied by a cold or flu. It was also a lot lower than any other swollen gland I’d ever had.
About 6am the following morning, I bumped into Steve, one of the trainers at the gym. Curious to know what might be swollen, I asked him about his knowledge of anatomy. I don’t remember everything he said, but I do recall his final conclusion: “You need to get that checked out.”
I couldn’t do anything about it right away because I had an executive coaching gig, but I stopped by my Dad’s office in the afternoon to have him take a look. Fortunately for me, my Dad still practices Internal Medicine at Northwestern Memorial in Chicago. His original thought was that it might be a goiter or a thyroid cyst, but he wanted me to get an ultrasound to be sure.
The ultrasound techs had a late afternoon opening so I walked across the street to get the test. Within an hour, the radiologist called my Dad on his cell phone to say that a number of lymph nodes on both sides of my neck were enlarged in addition to the 5.5cm mass I first noticed. They recommended a CT scan.
My dad immediately paged Dr. Stephen Becker, a great Ear, Nose, and Throat (ENT) surgeon who removed my uvula, tonsils, and part of my soft palate a few years back to prevent me from snoring. My Dad and Dr. Becker both thought the swelling was related to gum grafts I had done a few days before Christmas to prevent further recession. To be safe, Dr. Becker prescribed some antibiotics and said, “Have him get a chest X-Ray and come see me on Monday.”
Despite the fact that it was 5:30pm on a Friday, I was still able to get a chest X-Ray immediately. The following day, the radiologist called my Dad to tell him the chest X-Rays were clear. Relieved, I went to see Dr. Becker on Monday fully expecting the issue to be resolved with antibiotics. However, Dr. Becker didn’t like what he saw so he and Mallory, his wonderful medical assistant, decided to do a needle biopsy on the spot. Although it didn’t hurt, the sensation of a long needle sucking cells out of my neck five times is not something I’m in a hurry to repeat.
Even though Dr. Becker was optimistic the biopsy would show inflammatory cells consistent with his theory about the gum grafts, he decided to send me for a CT scan of my neck, chest, abdomen, and pelvis. Two days later, on Feb. 18, after securing the necessary insurance approvals, I kicked off my birthday with a 6:30am CT scan.
Later that same afternoon, as I entertained myself reading birthday greetings on Facebook, Dr. Becker called with the news I never expected to hear.
“We got the CT scan back. You have an 8cm x 5cm x 7cm tumor in your chest just below your sternum and above your heart. We don’t know exactly what it is, but it’s most likely either a lymphoma or a germ cell tumor.”
Dr. Becker went on to say that the odds were overwhelming the tumor would be curable with chemo and radiation. He also gave me the number of Malcolm DeCamp, a thoracic surgeon, so we could get another opinion. Fortunately, Dr. Becker had already told my Dad what was going on so I didn’t have to have that conversation.
When I called Dr. DeCamp, his assistant told me he wouldn’t be available for another week. So, I called Dr. Becker back and asked if he thought it was urgent enough to make other arrangements. Dr. Becker replied, “Let me page him and I’ll call you back.”
The next day Dr. Becker called to say he shared the scans with Dr. DeCamp the night before and they reached the conclusion that the tumor in the chest and the lymph nodes in the neck were all part of the same issue. To get a more definitive diagnosis, Dr. Becker scheduled a surgical biopsy of the lymph node in my neck for the following Wednesday, Feb. 25 at 9am.
What was supposed to be a simple outpatient procedure turned out to be the scariest day of my life.
I awoke from the procedure feeling groggy, but generally fine. Nevertheless, the recovery room nurse decided to give me Norco, a heavy pain medication, along with an infusion of something else I’ve long since forgotten. The net impact was to send me to another galaxy until mid-afternoon. Had I been thinking clearly, I wouldn’t have taken the Norco because I wasn’t in any pain—largely because the area halfway down my pec below my collarbone from my sternum to my shoulder was, and still is, numb from the surgery.
Anyway, I was finally alert enough to leave the hospital around 3:30pm. Seeing how out of it I was, my Dad invited me to stay at my parents’ house that night. I gladly accepted.
After stopping at my house to pick up some clothes, we were about to get on the expressway when my mouth became really dry and I felt like I was having trouble breathing. We pulled over so I could buy water at the Subway on Ogden and Milwaukee. I could barely stand up in line waiting for the two people in front of me to pay. By the time I got back in the car, I felt like my throat was closing.
We immediately decided to head back to the Emergency Room. On the way, my Dad paged Dr. Becker and called the ER to let them know what was happening. I’ve never been so grateful to have a father who is a doctor. There’s no substitute for getting immediate attention when it feels like you can’t breathe.
Thanks to Ativan and Prednisone, the doctors were able to get my throat spasms under control. Knowing it would likely happen again, they kept me overnight for observation. At some point while we were in the ER, we discovered what caused the problem. The anesthesiologist made three attempts to intubate me and irritated my epiglottis attempting to insert a breathing tube before my surgery. Later, when the painkillers had completely worn off, the small cut or cuts caused my throat to spasm constricting my airway.
I checked out of the hospital Thursday with prescriptions in hand after another mid-morning throat spasm. Knowing I wasn’t going to suffocate made the relapse slightly less scary. But it still got my attention.
One good thing to come out of the return trip to the hospital was permission to remove the gauze “Queen Ann” neck wrapping that did more to make me feel like I was choking than it did to protect the incision.
On Friday, I returned to Dr. Becker’s office to get a tube removed from the incision. They left the tube in my neck for two days to allow it to drain. Although we had hoped we might have results by the time of my appointment, it became clear that Monday was more likely.
With no results on Monday, uncertainty had my emotions running high. As much as I wanted to focus on the likelihood that the tumor was curable, there were times I wondered if I’d see another birthday.
Early Tuesday afternoon, Dr. Becker called with the preliminary diagnosis:
- Large B-Cell Lymphona.
Later, the oncologist, Leo Gordon, added a bit more specificity:
- Aggressive Primary Mediastinal Non-Hodgkins High Grade Large B-Cell Lymphoma
Despite the additional tremor-inducing adjectives, Dr. Gordon reaffirmed the prognosis that these tumors are treatable and curable the vast majority of the time.
When I first heard the diagnosis, my friend Jonny Imerman, the founder of Imerman’s Angels, a non-profit dedicated to cancer support, put me in touch with George, another member at our gym who made it through a similar diagnosis. George gave me tremendous hope not only through his overall attitude, but also because his treatment regimen consisted of three outpatient infusions after which he went home for a nap before hitting the gym. I thought to myself, “Hey, I can do that.”
Dr. Gordon had other plans. The treatment regimen for me is different. This coming Friday, March 13, I check into Northwestern Memorial for a four day inpatient chemo treatment that will be repeated every 21 days between now and the end of June. Once those treatments are done, the expectation is that I will be cured. If it doesn’t work, there are follow-up treatments, but I’m not going to go into any detail because I’d rather people visualize me getting through the six treatments and making it look easy.
So, why am I mentioning this? Because in two weeks or so, I will be bald. Completely. At that point, I won’t be able to hide any of this.
I’m also being public about this because I don’t want people to worry or feel sorry for me. I’m not dying and have no intention of checking out early. There are too many adventures left to have.
What I would ask, if you are so inclined, is that you picture me getting through this effortlessly. No side effects from the treatment. No more tumors. And lessons that come easily. That’s what I want you to visualize.
How am I doing emotionally?
There have been a few rough days and there may be more, but on balance I’m feeling very optimistic. The prognosis is great. A few people, including my Dad, have said, “If you have to have a tumor, lymphoma is the one you want.”
As you might imagine, I’ve done a lot of thinking about this over the past few weeks. I’m sure there are more lessons and insights to come, but the situation has changed my thinking about the language around this diagnosis.
First, I do not identify with having cancer. This isn’t denial as much as it is the simple recognition that the words cancer and chemo are far too broad. I’ve been thinking about health and disease as a range from 0 to 100 with 0 being perfect health and 100 being close to death. With that in mind, a common cold would be a 1. A small cut requiring stitches might be a 2. Broken bones, depending on the severity, might start around 3 or 4. Cancer, the way we currently define it, could legitimately take up 85 or more positions on the continuum ranging from the low teens or so up to 100. Such a broad range is a bit confusing—especially when you consider the associations many of us have with words like cancer and chemo.
When I was in grade school, the words cancer and chemo instantly made me think of hospitalized patients in isolation who were throwing up, feeling miserable, well below their normal body weight, and doing their best to postpone the end. Unfortunately, that scenario does play out for people at the highest end of the range. But it doesn’t sound like it will be my situation at all. And for that I remain incredibly grateful, optimistic, and a tad embarrassed that many people will imagine my reality to be much worse and less hopeful than it actually is.
Although this may change as I learn additional lessons and move through the process, my current attitude after spending so much time waiting to hear a diagnosis is this:
I have a map. I don’t particularly like what it says, but at least I have a map.
Overcoming, Beating, Kicking Cancer’s Ass, etc.
These are concepts I do not relate to. At all.
Words and phrases like these conjure up images of battle and swimming upstream. That’s not how I see this. I’m not doing battle with nature or anything else. And I certainly have no intention of challenging nature to fight back harder. Instead, I see myself walking gracefully with this condition, learning whatever lessons and humility I need to learn, and resolving the situation peacefully and quickly. I also like this approach, because as my dear friend, Tim Cunningham, pointed out, it takes a lot less effort than fighting.
From a spiritual perspective, I am convinced this journey is meant to teach me a few lessons. The first lesson was almost instantaneous. As a single guy turning 48, I was not at all excited about this birthday—or any of the previous 10—mainly because I feel a lot closer to 35 than 48. However, there is nothing like spending a few moments wondering if you’ll live to see another birthday to make you instantly appreciate the gifts that they are.
I’m sure there will be a few other lessons. You can count on me to keep a journal of them.
Random Thoughts and Observations (in no particular order)
- Physically, I feel fine and continue to work out six days/week. I have no intention of stopping, nor are the doctors encouraging me to.
- In-patient chemo sounds bad, but the truth is I’ll be in street clothes and probably feeling fine for the most part. The treatment is in-patient only because one of the drugs can be hard on the heart if it isn’t administered over a long period of time.
- I am not putting this out there to have people feel sorry for me or to create any sense of obligation to call, visit, or do anything other than visualize a positive outcome. I may, however, institute game night or something to relieve the boredom for those weekend nights I’ll be in the hospital. Let me know if you are interested.
- Cutting out dairy because of the role it reportedly plays in feeding tumors will be one of the hardest parts of the next few months. I absolutely love pizza and am not at all happy about limiting my cheese intake. But I’m willing to do it.
- I was genuinely surprised when the doctors recommended a visit to the sperm bank before treatment because of the chance that fertility may be an issue afterwards. After years of teaching them to swim backwards, it feels odd to pay for their storage.
- I will emerge from this a nicer, more patient, and more compassionate person.
NEXT: An Unexpected Journey – Part 2 will post here on 1/27/16.
© Rob Sullivan Productions, Inc.