This was originally posted as a Facebook note on May 17, 2015 to keep friends and family up-to-date and entertained.
I’ve debated over the last few weeks about how and when to share some of the observations and synchronicities in today’s update. Until this morning, I had planned on waiting until the treatment was finished completely. Instead, I’m trusting my intuition and sharing a few of them today.
Passing the Halfway Point
Treatment 3, the halfway point in my journey finished on April 26 with a one-hour dose of Cytoxin after five days of the other chemical cocktails. Until that moment, my plan was to hit the gym that same afternoon. Unfortunately, by the time I finished packing my bags for the trip home, I was exhausted. The fatigue, combined with stomach cramps that kicked in earlier than the previous two cycles, kept me out of the gym for another eight days. On Monday, May 4, I returned to the gym and managed to get in a decent workout nine out of the next ten days before my 4th treatment started this past Wednesday, May 13.
Chemo and the Gym
I cut back slightly on the amount of weight I lift during my workouts because my goal is to maintain some semblance of fitness, not exhaust myself during the healing process. That strategy is working well, but the cardio is a different story entirely.
Over the past year or so, I’ve been using a machine called Jacob’s Ladder for the cardio portion of my workout. It took awhile to work up the nerve to use the machine because I could tell by looking at it what an intense workout it would be. The machine has wooden slats positioned about nine inches apart on roughly a 45-degree angle. To use it, you have to put on a belt connected to a tension wire. Once you get on the machine, you use your arms and legs to start climbing. The tension in the wire controls how quickly the slats move so if you were to fall off or stop climbing, the machine would slow to an almost immediate stop. This is a great feature because I had visions of flying off the back and taking a few nearby treadmill riders with me.
As it turned out, the graceless dismount I envisioned wasn’t an issue because the first time I used Jacob’s Ladder I only made it about a minute before I was ready to pass out. At a pace between 100 – 110 steps per minute, it makes the nearby Stairmasters feel like a casual stroll.
Once I grew accustomed to the machine, it wasn’t long before I worked my way up to intervals of 4 minutes, 3 minutes, 2 minutes, and 1 minute with a one minute break in between. Strange as it might seem, those 13 minutes are more than enough to work up a great sweat and be completely out of breath.
Before I found out about the tumors, I noticed more shortness of breath than usual after the intervals. In hindsight, it makes sense because the largest tumor in my chest was no doubt putting pressure on my lungs. However, because I was still clueless about my condition, I assumed the excess fatigue was from the days I took off when my knee was bugging me. When four minutes became more than I could handle, I simply adjusted the workout to include additional shorter intervals. This strategy helped, but it didn’t resolve the issue entirely.
Since the treatments began in March, Jacob’s Ladder has become even more challenging. At the moment, I can only do three one-minute intervals with a minute in between. Last week, I added a fourth minute and was surprised to find I could barely drag my jelly-like legs to the water fountain afterwards. Besides being sweaty, it took a good ten minutes to catch my breath and not look completely exhausted. I’ve never done an Ironman—mostly because of the swimming, biking, and running—but my legs felt exactly the way I would imagine they might after a long, intense competition.
When I mentioned the extent of the fatigue to Dr. Gordon’s nurse, Betsy Mitchell, she wasn’t surprised at all because she reminded me that my hemoglobin count has been below normal. Since hemoglobin carries oxygen throughout the body, it makes sense that it would impact my endurance. Until that moment, I didn’t realize my cell counts were low because all along everyone said the numbers were fine. “Fine” as it turns out is not normal. Fine is the level that can be reasonably expected at this point in the treatment process. In other words, fine is lower than the level for a healthy person, but not low enough to need a blood transfusion.
That makes me feel better. And here I thought I was wildly out of shape after just a few short months of not working out as regularly as I’d like.
Side Effects & Neck-related Fears
The stomach aches and intestinal cramps I’ve experienced after each treatment continue as a cross between flu-like symptoms and the strange blocked feeling that sometimes accompanies food poisoning. Each time it’s been a bit different. The worst symptoms happened five days after the first treatment when my stomach hurt for three days and felt even worse after I ate. This last time, the stomach cramps kicked in after only a day or so, and lasted almost a week. While I wouldn’t describe it as pleasant, it was far from unbearable. Nevertheless, finding ways to alleviate the cramps has turned my body into a science experiment of sorts since the symptoms aren’t typical for the treatment regimen.
There’s no way to know for sure, but I have a feeling my body’s strange response is directly related to my almost life-long fear of vomiting. In a way, it’s great not to feel nauseous, but it’s not good if throwing up would be the easiest way for my body to rid itself of toxins. I’ve only thrown up twice since I was 10 years old. The first time was twenty years ago in a playgroup at Children’s Memorial Hospital when I rather stupidly ate some homemade Play-doh in a failed attempt recapture the pleasant memories of the salty taste from my childhood. The second time was Jan. 3, 2014 in Temecula, California following my last ever bowl of clam chowder. That time, I actually had to force myself to throw up because even though I desperately needed to, my fear kept it from happening naturally.
Knowing that I don’t seem to experience nausea the way most people do, I decided to take Zofran, the medication prescribed for nausea, to see if it somehow helped the bloating and cramps. While it wasn’t perfect, it was better than the Bentyl by itself. So far, the most effective has been the charge nurse’s idea to add Reglan to the mix.
I have every reason to expect the bloating and cramps will be significantly reduced over the next week because Betsy and Dr. Gordon cut the dose of Vincristine from 0.8 mg to 0.5 mg. I am confident this will help because one of the well-known side-effects of Vincristine is to irritate the intestines. Whatever the case, this next week will be about visualizing minimal bloating. If you have time and are so inclined, I welcome any healing energy or visualization you can spare.
The other good news of the week was hearing that the treatment dose for the other medications will not be increased after this weekend. I misunderstood and thought it would be increased 20% on the next treatment as it had for the 2nd, 3rd, and 4th treatments. Fortunately, that isn’t the case. From here, the dose will either stay the same or go down slightly depending on how well my body handles this week.
SYNCHRONICITIES
If you aren’t up for hearing about the unexplainable, more spiritual side of this journey, feel free to skip to The Power of Music section for more on the lighter side of the experience. For those who are open, I am compelled to share a few of the more interesting synchronicities to date. I haven’t necessarily figured out the true significance behind all of them, but taken together, these meaningful coincidences have given me the inescapable feeling of being watched over—in a very good way.
An Angel at Home
From a timing perspective, one of the most interesting synchronicities began in November or December—around the same time the doctors believe the tumors started developing. My wonderful friend, Liliana, mentioned that her friend, Christina was looking for a roommate. Christina, who moved to Chicago from Venezuela two years ago, had been sharing a studio apartment with Liliana while she was looking for a job. At the time, I was hosting couchsurfers regularly and wasn’t really looking for a roommate, but felt a strong pull to be open to the possibility.
When Christina started to search in earnest, she came over to see my place. Maybe because I grew up with three brothers and two sisters, I enjoy being around people every bit as much as I value my alone time. That, combined with the fact that I travel a lot made it a great potential fit for both of us. A few weeks after seeing my place, Christina texted to say she was interested in renting the room. I was happy in the moment and awed in hindsight.
Two weeks before the first noticeable symptoms occurred, Christina moved in. At this point, you may be thinking, “So what?” I would agree except for the fact that Christina works for Imerman’s Angels, a nonprofit that pairs cancer patients with people who survived the same diagnosis and treatment regimen. Besides connecting me with an official mentor, Christina has provided a wealth of knowledge about other support services as well as introductions to her equally supportive colleagues. Better still, Christina has been a great listener and mentor in her own right. But that was only the beginning.
John of God
Diana Rein, a Facebook friend and great photographer I worked with before she moved to LA, sent me a private message on March 10 and asked if I was familiar with John of God, a somewhat famous Brazilian healer who had once been featured on Oprah. The name sounded familiar so I went to my bookcase. Sure enough, the book I vaguely remembered reading back in 2007 was practically front and center on the third shelf. That was a surprise by itself because I would have put money on it being in my parents’ garage with dozens of other books from years past.
I probably wouldn’t have paid much attention except for the fact that John of God’s name came up two more times over the next week or so from several other friends–none of whom know each other. The second time occurred when I called Gail, a woman my friend Nikki Grieco told me about back on March 4. Nikki mentioned that Gail had a crystal healing bed that she lets people who are going through treatment use at no charge. When I finally called Gail, she explained that the bed was a gift from John of God during one of her visits to Brazil.
During our first conversation, Gail also suggested I send her a picture of myself that she could forward to John of God for a blessing or remote healing.
A few days before I was scheduled to use the healing bed, I had the following unexpected email exchange with Veronica Rae Cowen, a very spiritual friend from California who was given my name in meditation by her spirit guides a few years back (another bizarre story Veronica is going to write in her own words for my next book). Although we’ve never met in person, Veronica has shared a number of valuable meditation practices through her daily group emails as well as in private conversations. Her friendship is a gift I cherish.
March 20, 2015
From: Veronica Rae Cowen
To: Rob Sullivan
Subject: John of God
Hey!
I am going to see John of God in Brazil on Monday for two weeks. Send me a photo of yourself and three healing requests (anything!) and I will bring it down with me. The entities can work on you in this time of healing.
Love,
Veronica
—–
March 20, 2015
From: Rob Sullivan
To: Veronica Rae Cowen
Re: John of God
That’s amazing. Did we talk about him? This is about the third or fourth time he has come up for me. I’ll send you a picture for sure along with the requests. You are wonderful.
—–
March 20, 2015
From: Veronica Rae Cowen
To: Rob Sullivan
Subject: Re: John of God
I don’t think we have ever talked about him… : )
I just heard so strongly this morning to email you about it!!
—–
I love the fact that Veronica’s guides have now contacted her on my behalf twice. I am truly blessed.
While there isn’t a result I can point to with certainty and say, “This is what happened as a result of the John of God connection”, the timing of the events certainly caught my attention. Diana brings him into my awareness, Gail offers to let me use the crystal bed and forward the pics to John of God, and Veronica is directed in meditation to give me the opportunity to have her hand carry the photos.
Veronica returned from Brazil a few weeks ago and told me that she not only presented the photos to John of God, but also returned with a large egg-sized crystal and healing herbs that she sent as a gift. Amazing.
Here are a few of the other synchronicities:
- At the beginning of this process, three different people recommended Dr. Leo Gordon, my oncologist–on the same day. Dr. Gordon encouraged me to get a second opinion, but my intuition told me I had already found the right guy. Given the wonderful people who have cared for me on this journey, there is no question I made the right decision.
- Shenoa Robinson, a gifted medical intuitive, confirmed the lymphoma diagnosis almost a week before the official test results came back from the hospital.
- About 6 weeks ago, I was home when my friend Sia Apostolakis popped into my head. I thought to myself, “It’s been ages since we’ve talked. I’d love to catch up with her.” Less than five minutes later she called.
- A few days later, on April 7, I was in my room around 3:30pm when out of nowhere I thought to myself, “I hope I get to see Jette (one of my couchsurfers) before she heads back to Berlin.” Less than 10 minutes later, I received this message:
“Hi Rob! I just read journey part 3 and 4 because I finally got all my midterms behind me. I really enjoyed the reading and I am happy about all your positive insights and funny anecdotes (hot European couchsurfers, mmmh?! Hahahaha) …I realized that I don’t have a lot of homework to do this weekend and I was wondering if you would like me to come over? I mean, if you are free and in the mood and everything. I don’t know how the upcoming weekends in April will be and the finals start early May and 13th of May school is over.”
I love it when this sort of thing happens. It reinforces in my mind just how connected we all are. It’s really mind-blowing when you think about it. Many thanks to Jette for her generosity and friendship!
There are a few more interesting synchronicities, but I’ll save them for a future update.
The Power of Music
Last Saturday night, I had the privilege of seeing my fun, talented friends in the band Eddie From Ohio perform at City Winery in Chicago. Toward the end of a fantastic evening of original music, Robbie Schaefer, who is as great a story-teller as he is a singer/songwriter, introduced one of the rare cover tunes the band performs:
“So this song is not by us, but I do some international travel these days. I started a nonprofit a few years ago called One Voice and we connect kids—and empower kids—in different parts of the world through music and the creative arts. One of the places I’ve been to is in India. I was there about a year ago. At the end of the trip, I was in Rajasthan, which is like the Northwest desert province of India. We were there the last night at this restaurant and I was seated next to this American guy who is apparently a science teacher there. He asked me what I did. I told him I was a musician and what I was doing there. He said, ‘Oh, well what band are you in?’
(Pause)
“’I hate that question.’
(Pause).
“In places like Chicago or D.C. or San Francisco or a lot of places in the United States, you say Eddie From Ohio and the person might really know who we are…and we’re kind of popular.
“But were not as popular in Rajasthan. It’s just that awkward moment, right? And so, I said, ‘Eddie From Ohio’ and he said, ‘Ah, I LOVE that band!’
“And so, I was like, ‘Are you kidding!?!?’ He couldn’t remember where he knew us from, but he knew he just loved Eddie From Ohio.’
“The very next day, the closest airport was a 4-hour bus ride away. There we are sitting next to each other on the bus. We’re talking about nonprofit work and stuff like that. He all the sudden went, ‘Wait, I know where I know you from. Did you guys do a song about a boat?’
“I said, ‘No. No, I don’t think so. (pause) Cause sometimes I’m just dumb like that.’
“And he said, ‘Yes, yes you did.’
“And I said, ‘Oh, well there was one song…yeah it’s actually a Lyle Lovett song. Yeah we do play that.’
“He said, ‘Did you record it?’
“I said, ‘I don’t think so.’
“Then he reminded me that we did. And he said, ‘Man, that song saved my life. Your version of that song saved my life.’ He said, ‘In the recording—it’s a live recording. Right at the beginning there’s this guy talking about how he has three kids and it’s hard to go on the road.’
“And I said, ‘Yeah, that was me.’
“He said, ‘That song saved my life while I was stationed in Antarctica for six months. I was a scientist there and I was completely, utterly lonely. I would listen to that song—your version of that song—every single morning and it really got me through those six months.’
Robbie continued:
“I thought, ‘So, here is this song written by a guy from Texas and recorded by a band from Virginia and listened to by a guy from Maine who is now sitting on a bus in the Indian desert next to me. And I thought, ‘Only music can do that.’”
Had Robbie stopped there, it would have been a great story. But he didn’t. Instead, he began picking the opening notes of “If I Had A Boat” and said:
“And so we’re going to play that song for you now. But I want to send it out to our dear friend Rob Sullivan who is here tonight because Rob’s been seeing us for a lot of years. And I think Rob knows all about the power of music–inside out. So this goes out to you, Rob.”
What a truly heartwarming and unexpected surprise! Thank you, Robbie.
Thanks to Paul Wiltberger and John McGuire who recorded the show, I not only have a wonderful memory of the moment, but also have a digital copy of the entire evening complete with Robbie’s funny and beautiful dedication.
A Somewhat Unexpected Disappointment
The only disappointment I recall since this journey began is the news I received this week when I called the Be the Match Registry to see how this experience would impact my status as a potential bone marrow donor.
I was inspired to join the database shortly after grad school when a high school classmate, Cassie Champion, found herself in need of a donor. Although many answered the call, a donor wasn’t found in time. I didn’t know Cassie personally, but I remember thinking what an amazing experience it would have been to save her life—or that of someone else—with the gift of bone marrow.
In the 20 years or so I’ve been listed as a potential donor, I’ve never been a match. That’s unfortunate because now the lymphoma diagnosis officially disqualifies me as a donor—even after it’s considered cured. It makes sense that I may not be the ideal donor, but if the roles were reversed and my last hope was someone who had been cured of lymphoma, I’d love to have the option to make that decision myself. Regardless, my hope at this point is that someone reading this will be inspired to join the registry and go on to save someone’s life. When you do, let me know. Seems I need a surrogate.
Random Observations & Highlights
- Given the hair loss that has left more than half my body in a prepubescent state, I find it funny that one of the other side effects is an almost constant reminder of that same era. When I started my almost stratospheric rise in height from 4’10” to 5’9” at the age of 14 (insert sarcastic font), I distinctly remember being more klutzy than usual as I adjusted to my ever-so-slightly elevated center of gravity. Now, with the neuropathy (tingling in my fingertips), it’s like going through that phase all over again. Unfortunately, this new phase didn’t kick off with a growth spurt. Instead, the tingling has created a strange hand-eye coordination issue when I’m not paying full attention. Several times a day I find myself picking up things I’ve knocked over that were once in the general vicinity of whatever I happened to be reaching for at the moment. For example, whenever I reach in the medicine cabinet for one medicine, I somehow knock over three more on either side of it.
Important Safety Tip: If you have lots of breakable stuff with sentimental value, it would probably be best to keep me away from it for the next few months.
- Despite the cramps, bloating, and prolonged days of somewhat low energy, my spirits remain high. It’s hard not to feel an overwhelming sense of joy and gratitude given the love, support, and positive energy people continue to send my way. I am still the luckiest guy I know.
- The weekend before last, my dear friend, Clare Westwood, flew in from Pittsburgh to watch movies and help in countless ways around the house. What made it even more fun was the fact that it was only the second time we’ve seen each other since we volunteered together at Children’s Memorial shortly after college. What a treat! Thank you, Clare!!!
- I guess I’m still not fully used to being bald. As I washed my hands at the gym, I looked in the mirror and was shocked to see what looked like a 1” x 1” piece of white tape stuck to the top of my head. I couldn’t imagine what it was or how it got there. Then I realized it was nothing more than the reflection of the men’s room lights on my shiny new dome.
- On some level, it felt strange to hear the nurses and staff on the 15th floor of Prentice each greet me this past Wednesday with an enthusiastic “Nice to see you again.” But I must admit, it’s a lot less awkward than “Come back soon.”
© Rob Sullivan Productions, Inc.