Since Parts 2 and Part 3 are relatively short, I decided to post them together.
An Unexpected Journey – Part 2 (Prep Week)
By Rob Sullivan March 13, 2015 at 7:33am
Since quite a few people honored me by asking that I continue to journal, here is Part 2 of An Unexpected Journey.
Even though the prognosis for treating the tumors is great, I’m well aware that the mere mention of words like “tumor”, “lymphoma”, and “chemo” can send shock waves of terror through people. Myself included. Until this week, I was blissfully unaware of the prognosis for lymphoma. With that in mind, I gave considerable thought to the people I needed to tell personally—either face-to-face or via telephone.
Right near the top of the list was my little friend Steele who will turn 11 in May. Steele is the son of my dear friend, Penney. He and I met when he was three months old and have had a special connection ever since.
It’s got to be some sort of horrific record that none of my five siblings started having grandchildren until my parents had been married for 48 ½ years. So, for a while, Steele—who calls me Uncle Robby—was the closest thing my parents had to a grandchild. When I called Penney late last week to share the diagnosis, we talked about the pros and cons of telling Steele. Even though he and I don’t see each other as often as we did when he was a baby, I knew in my heart it wasn’t something I could hide. Knowing how incredibly compassionate and sensitive he’s always been, I planned my words carefully.
On Sunday, Steele and I had a date to go to the Grand Opening of Mondo Meatball, a restaurant opened by my friend, Dean Casagrande. My brother, John, is the Executive Chef there. As we sat across the table from each other, Steele told me he was getting bullied at school. It was heartbreaking to hear, but I was glad to know the right people were aware of the issue. I told him my own story of having been bullied in grade school and we spent quite a bit of time talking about different ways to think about the situation.
Once the bullying conversation came to its natural conclusion, I took a deep breath and started to tell Steele about my current situation. I don’t remember exactly what I said, but I kept everything factual, low-key, and prefaced my story saying I’d be fine so he’d know there was no need to worry. I had visions all weekend of tears, hugs, and me doing my best to comfort Steele. But I must say he took it exceptionally well. So well that a little part of me laughed when I thought, “Aren’t you going to cry even a little?” Instead, he flashed his bright smile, walked back to the makeshift buffet, and helped himself to another serving of the cookies that came with his gelato. Mission accomplished.
The week began with a visit to the Urology Department at Northwestern, aka the sperm bank. My brother, Bill, said it best when he described the process as “uniquely awkward”. I’ll leave it at that.
Tuesday started with an echocardiogram—a fancy way of saying “heart ultrasound.” I’m not 100% clear on why the test was necessary, but I’m pretty sure it’s related to the impact one of the treatment drugs can have on the heart. To my delight, the efficiency of my heart is on par with marathon runners. That makes me especially happy considering that I only run when events demand it.
After leaving the echocardiogram, I had a few hours to occupy myself before my PET (Positron Emission Tomography) scan. Ordinarily I would have spent that time eating, but Betsy, the Nurse Practitioner in Dr. Gordon’s (oncologist) office instructed me to limit myself to water for a few hours before the test.
The PET scan is one of the more fascinating diagnostic tools for tumors because it helps determine the stage of the lymphoma. It starts when the lab technician injects the patient with a radioactive sugar solution through an IV. Tumor cells thrive on sugar—one of the reasons avoiding dietary sugar is recommended—so they light up like Christmas trees under a machine similar to the one used for CT scans.
When the nurse came in to start the IV, she looked at the veins in my right arm and decided to start there. Strangely, she was able to draw blood, but she was unable to inject anything in the first two veins she tried. To her credit, she looked at me and said, “This is really embarrassing. You have great veins, but I’m having trouble getting this to work. It may just be my touch today. Either way, I’m going to get someone else.”
A few minutes later, another nurse came in, found a vein in my left arm and inserted the needle. I’m not sure what she hit, but I had an instant pain beyond what you’d expect from a typical injection. The IV worked fine, but I experienced a dull, throbbing feeling at the sight of the IV near my elbow and in the meaty part of the thumb on my left hand.
When the original lab tech returned, she tested the line and connected it to a rather intimidating looking cylinder about half the size of an oil can. Once the radioactive sugar solution started coursing through my veins, it became a waiting game. Almost 90 minutes later, I walked across the hall for the scan. That part was easy. All I had to do was lay on the table with my arms over my head for 18 minutes without moving.
Knowing we wouldn’t have the results until Thursday, I headed home. As I pulled out of the hospital parking garage wondering how advanced the lymphoma was, I turned on the radio. To my horror, I heard the song “Don’t Fear the Reaper” by the Blue Oyster Cult. I love the song, but that wasn’t exactly the sign I was looking for as I wondered about my prognosis.
Fortunately, my friend Robbie Schaefer from the band Eddie From Ohio called about one minute before the song ended. I just love Robbie. Besides being an incredible human being with a huge heart, he also has a peaceful energy and the ability to put everything in perspective. When I told him about the song and thanked him for his perfect timing, Robbie laughed and said “Never doubt that the Universe has a sense of humor.” In that moment, he instantly changed my perception. Thinking of the moment as a cosmic joke rather than a sign made a huge difference in my outlook.
Later that night, I asked my Dad about the throbbing in my arm. I’m pretty sure he called it “referral pain”, a term describing pain that happens away from the point of injury. He suggested I ice it. Fortunately, I had a few large cold packs from when I broke my arm four years ago so I used those. When I awoke in the middle of the night, it still hurt so I went downstairs to switch cold packs. A few hours later when I got up for the day, the pain was gone. I was thrilled because I wanted to get one last chest and shoulder workout in before my appointment with Interventional Radiology to insert a chest port.
Wednesday (or as I like to refer to it, the “take a little out, put a little in” day)
Even though my first appointment wasn’t until 10am, I made it to the gym by 5am so I could work out, get home, and eat a big breakfast. After 7am I wasn’t allowed to eat or drink anything until after the insertion of the chest port.
Once I arrived at the hospital, the morning started with a 10am biopsy to make sure the lymphoma hadn’t spread to the bone marrow. Although the results, which we won’t get until next week, won’t impact the treatment, the doctors want a baseline measurement to determine the exact stage of the lymphoma. In my case, since all of the tumors are above my diaphragm, it is considered Stage 2. If it had spread below the diaphragm, it would be considered Stage 3. However, if they find lymphoma cells in the bone marrow, which they don’t expect, it will immediately be considered Stage 4. It’s rare to leapfrog from Stage 2 to Stage 4, but it can happen.
I wasn’t looking forward to the “harvesting” of the bone marrow because it sounds painful. However, I’m happy to report it wasn’t. Andrea, another NP in Dr. Gordon’s office, had me lay face down while she injected me with medication to numb the Iliac Crest at the top of my left hip. The initial sensation wasn’t even as bad as a bee sting. Once the bone was numb, all I felt was pressure, much like what you might experience at a dentist’s office under Novocain.
During the entire procedure, which only lasted about 15 minutes, another lab technician prepared slides. When they finished, I asked to see the marrow. Picture a two-inch dark red noodle about the size of angel hair pasta and you’ll get the idea. The piece I saw was floating in a see-through specimen container filled with a clear liquid I’m guessing was formaldehyde.
After leaving Dr. Gordon’s office, I headed to the 4th floor for the surgical insertion of the chest port. The chest port is long thin flexible tube the Interventional Radiologists insert into a vein in my chest that leads directly to the heart. At the top of the tube is a small plastic piece with a rubber cap. The cap has three rubber protrusions that can be felt through the skin and mark the entrance to the vein so it is easy for nurses to draw blood, make injections, or set-up an IV infusion. The port, which can remain in my chest almost indefinitely, eliminates the need for shots or other traditional IVs.
Despite the convenience, I wasn’t looking forward to getting the port because I had originally been told to avoid chest and shoulder exercises for as long as it remained in my body. However, when I asked the radiologists what exercises I could safely do, they said there were no limitations. After the site heals next week, I can do whatever workouts I like. That, along with finding out that the tumor likely hasn’t spread beyond what we initially thought, was easily the best news of the week.
Thursday was an easy day with a second visit to the sperm bank—just in case I want to have 20 or 30 kids someday—and a follow-up appointment with Dr. Becker and Mallory to check the site of the incision on my neck. The coolest part about Thursday was seeing the PET scan results that I’ll post separately for anyone who wants a clear picture of the tumors we need to visualize disappearing.
My first treatment begins at 8:30am. I’m excited to get this started because it will get me that much closer to being cured. But I’d be lying if I didn’t admit that it’s a little scary not knowing how my body will react to the chemical cocktail.
Other Random Thoughts of the Week
- Although the pressure in my neck is about the same level it’s been since I first noticed it on Feb. 11, I’ve actually gotten used to it. I now have a new appreciation for why some people don’t get treatment early enough. Once the new equilibrium is established, you don’t really notice the discomfort as much. Instead, it becomes the new normal.
- When people share difficult journeys or experiences on Facebook, I have historically been hesitant to “like” the post because liking, on some level, seemed a little too much like saying, “Glad you’re going through that, a**hole”. However, I’ve come to see the likes for what they are, a sign of support.
- Speaking of support, I have been blown away by the thoughts, prayers, and positive energy shared by so many friends this week. Thank you! The level compassion and the feelings expressed have been better than the best Facebook birthday. Nevertheless, I still don’t recommend lymphoma as a strategy for reconnecting.
March 14, 2015 at 4:01am
Good news yesterday. The PET scan results and the preliminary bone marrow analysis indicate that the tumors are only Stage 2. For those who like to visualize, the tumors we need to shrink are the bright white areas in my chest and neck between the horizontal lines drawn on the picture. For reference, the chest tumor is the largest and measures a little over 8cm x 5cm x 7cm. The treatment is going well. I see scuba and beach volleyball in my plans for the summer.
An Unexpected Journey – Part 3
By Rob Sullivan March 21, 2015 at 1:09pm
Until recently, a typical Saturday morning would begin with a workout followed by a few hours holding the babies at Lurie Children’s Hospital where I’ve volunteered since high school.
But today is different.
One week ago yesterday, I started the first of six in-patient treatments for the lymphomas in my chest and neck. In some ways, nothing feels different. In other ways, everything is different.
Today marks the official start of my temporary leave-of-absence from Children’s, one of my favorite places to spend time. It feels strange, but what makes it easier is the thought that my time away is really no different than if I were taking a few months off to travel. With that in mind, my goal is to put my attention, energy, and focus into the present moment so I don’t accidentally wish my life away waiting for the treatment to come to an end.
Ordinarily, I’d fill a free morning like this with a trip to the gym. However, I’m not cleared to do that until tomorrow. This leaves me with a Saturday in Chicago completely devoid of responsibilities and appointments. If this has ever happened before, I don’t recall. In any case, I am using it as an opportunity to reflect on the journey up to this point.
Before checking into the hospital last Friday, I spent five hours in the hem/onc clinic getting an infusion of Rituxan, a smart drug that targets a specific type of cell that exists on the outside of tumors. The nurses administered the Rituxan with a heavy dose of Benadryl, an antihistamine that helps minimize adverse reactions. Since my body tolerated everything well, the next infusion will be three and a half hours rather than five. When that goes well, the remaining treatments will be a rapid infusion.
I left the clinic around 2pm in search of a quick lunch before checking into Northwestern’s Prentice Hospital for the in-patient portion of the treatment. At this point you might be thinking, “Hey, I thought Prentice was the women’s hospital.” And you would be correct. Don’t worry. I didn’t complicate my situation with a gender reassignment. For whatever reason, Northwestern chose three floors of Prentice as the center for treating patients—male and female—who are experiencing tumors.
Before I go on, I need to explain why I phrased the last sentence the way I did. In an earlier post, I talked about how I don’t identify with cancer because the term is too broad. That’s still true. In this case though, there is a more subtle distinction as it relates to what is happening with my body and how I talk about it.
Shenoa Robinson, a gifted medical intuitive and another friend far wiser than I, both pointed out the importance of separating myself from the tumors verbally and energetically. For this reason, I am not using personal pronouns like “my” and “mine” with respect to the tumors. Nor will I use the word “have” to describe them. The tumors are not something I have or possess. And they are not mine. Rather, they are something I am experiencing. Most importantly, they aren’t permanent.
After a quick veggie chili, I checked in with the admissions people and waited for my name to be called.
In a most welcome surprise, my friend Ross Parr came by and hung out for a few hours. His timing was perfect because it set the tone for the entire stay. Within minutes of our arrival in 1548, Ross and I were laughing and having fun with Annette, my primary nurse who had the thankless task of performing some necessary, but rather inelegant tests. In anticipation of this, my plan for the next admission is to show up with candles and mood music to set the stage for the next hospital-directed invasion of my privacy.
Although we didn’t take full advantage of the 24/7 visiting hours, it wasn’t long before some of the nurses began referring to 1548 as the “party room” because there was almost always music playing and people having fun. An important part of that energy came from my decision to wear shorts, sandals, and a t-shirt rather than a hospital gown. While I recognize that many of the patients undergoing treatment face very different outcomes, I am surprised more people don’t wear their own clothes given the psychological benefit. There is something about wearing a hospital gown that seems to suck the energy right out of my body.
Dose Adjusted R-EPOCH
The goal during the course of each in-patient stay is to go through four bags of EPOCH, a chemical cocktail that looks a lot like orange Kool-Aid. Since each bag takes 22 hours to administer, the hospitalization is mostly about being monitored while the drugs drip and melt away the tumors.
Fortunately, there were no side effects from the treatment and I felt great the entire time. Better still, the pressure in my chest and neck subsided significantly and the night sweats stopped. After I left the hospital, there were a few moments in which I felt a strange combination of tired and slightly light-headed, but that didn’t last long. For the next four treatments, this dose will be increased 20% each time based on my body’s ability to handle it.
Expanding My Emotional Range
Reflecting on the events of the past few weeks, the biggest surprise has been the impact this experience is having on my emotional range—in a good way. Even though it wasn’t necessarily in my best interest, I’ve always been fiercely independent. Allowing myself to be vulnerable is not something I’ve ever done to any meaningful degree. That part is, and remains, somewhat scary. So far though it’s been an inspiring source of strength. I have been so touched by the kindness and raw emotion that people have been sharing it has become dazzlingly apparent that “tears of joy” is not a figure of speech. They are real. And they are beautiful.
For a brief period, I was concerned that people would feel sorry for me or assume a serious or solemn tone in my presence. All of those fears were wiped away in an instant with Paul Wiltberger’s comment on my Facebook post, “I’m just going straight to the important question, do you wanna give me any concert tickets you can’t attend? I’ll still bring the date you have for the evening also!”
I laugh every time I think of it.
I also loved the suggestions by Penney and Ilanit that my visits to the sperm bank could have been made a little less awkward with the help of a few hot European couchsurfers.
In short, laughter has been a constant and welcome companion.
I’m embarrassed to admit that the only time an attempt at humor backfired was my own doing. Early in the process when we were still waiting for a diagnosis, my sister, ML, called to ask about the results. I casually replied, “Well, the doctors said I only have 60 years left to live.” Unfortunately, ML thought I said “6 to 8”. Oops.
Strength vs. Weakness
My fear from the start was that people would perceive the tumors as a weakness or see me as somehow less of a man because I’d need help from others to get through this. Not once did it occur to me that some might actually be inspired by my willingness to be authentic and honest about the situation. Therein lies the gift. The genuine connections that have happened as a result have been a powerful source of strength and positive energy.
My dentist, Scott Stiffle, was the first to point out that this journey is, by nature, one that I will do by myself. No one else can go through the treatment with me or for me. But that doesn’t mean I’m alone. The truth is, I have never felt less alone in my entire life. I wouldn’t have expected to experience such a strong sense of connectedness, love, gratitude, and appreciation, but that is exactly what I feel. I am blessed.
A Few More Highlights…
- My friend, Chris Hennes, called this week to let me know he was at a meditation retreat in LA with “18 hippies” over the weekend. At the suggestion of Otto Penzato, the group placed me on the healing mat “in absentia” and worked together to channel healing energy. As Chris put it, “You get your own form of radiation therapy, except it’s not radioactive. It’s love.” That’s fantastic! Thank you.
- It cracks me up that the doctors I’m working with are referred to as “The Lymphomaniacs”
An Unexpected Journey – Part 4 (Treatments, Hair Loss, and Other Random Observations) will be posted by Feb. 3, 2016.
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