An Unexpected Journey – Part 9: Unplanned Next Steps, Lessons, Synchronicities, and Random Observations

Here is installment 9 of 11 from An Unexpected Journey. This was originally posted as a Facebook update on August 8, 2015 to keep friends and family up-to-date and entertained. At the encouragement of many, I’m re-posting so people I am not connected to on Facebook can read the journal entries as well.

Exactly five months ago today, I wrote the first installment of an Unexpected Journey to share the strangest and most powerful gift I’ve ever received.

On February 18 when I first heard about the tumors in my chest and neck, I wasn’t seeing it as a gift. The first 12 days between the discovery and the diagnosis were the most difficult emotionally. Although I don’t remember too many specifics, there were a few moments when I was a lot more short-tempered than I would like to admit. To be fair though, it didn’t take too long before I slid into place of relative peace, acceptance, and openness.

Somehow I knew at a soul level that the tumors had a lesson for me. Even through the initial uncertainty surrounding the identification and treatment plan, I never felt like I was in a battle. My attitude may have been a reflection of my non-violent nature. Whatever it was, I knew from the start that battling, fighting, and all the other ways people talk about dealing with cancer didn’t make sense to me. Instead, my goal was to accept it, walk with it, learn from it, and resolve it. I had no intention of fighting because I knew in my heart that resistance would only tempt nature to fight back harder. I may be strong, but I wouldn’t give myself particularly good odds in a battle against life and nature.

What I didn’t realize at the time, but see clearly now, is that dealing with uncertainty was a huge part of the lesson. Once the diagnosis—Aggressive Primary Mediastinal Large B-Cell, Non-Hodgkin’s Lymphoma, Stage 2—had been determined, uncertainty showed up in other forms. How would my body handle the chemo treatments? What side effects would I experience? What would be the impact of increasing the dose for the first four treatments? How would I handle six 5-day inpatient treatments as I watched the weather get progressively warmer? Would I be so sick that I would need someone to stay with me?

Despite the ongoing uncertainty, I quickly found myself in a place where, except for the strange and unexpected side effects, I felt happier and more connected than I’d ever felt in my life. As the journey progressed, I made it past milestone after milestone:

  • My body tolerated the medication
  • The progressively increased dosage went well
  • I never experienced anything even close to nausea
  • A great team effort by doctors and nurses helped me deal with the intestinal discomfort

The more milestones I passed, the more certain I felt that the lessons were over.

By the time I made it to the final treatment, the primary uncertainty was how my body would handle what everyone said would be the most difficult treatment because of the cumulative effects. Even Jei Atacama, the Japanese healer I work with, expressed his concern before the treatment when he said, “Your body has had all the chemo it can handle.”

In that moment, I knew what I had to do. So, I put the word out on Facebook explaining the situation and asking for any prayers and positive energy people felt like sharing.

I am thrilled to say it worked. Rather than being the most difficult, Treatment 6 was actually the easiest. Better still, there were no intestinal issues whatsoever. Even the tongue pain I experienced after Treatment 5 wasn’t as bad. For all of you who prayed, visualized, and sent positive energy, thank you! It made a huge difference.

July 4th Weekend

The worst part about Treatment 6 turned out to be July 4th weekend. I had originally planned to spend the holiday at my parents’ house, but my Dad came down with the same flu that put one of the women in his office in the hospital. Concerned that my blood counts left me susceptible to infection, my Dad called and warned me not to come.

That afternoon, since I didn’t have much food in the house, I drove to the store. Although I spent less than 10 minutes shopping, the effort it took to walk back across the parking lot left me in a place where all I could think about was the nap I was going to take when I got home. In that moment, I knew I’d never make it through the 6+ hour adventure of seeing the final Grateful Dead show at Soldier Field the next night.

It broke my heart to call my brother, John, who bought me the ticket. But it was the right thing to do. I didn’t even have enough energy to stay awake for the whole show watching it streaming on YouTube from my sofa. Nevertheless, I still felt fortunate because I wasn’t in any pain. Being extremely tired is much easier to handle.

Blood Counts

On July 6, I went in for my blood counts and found out that my white cell count had hit a personal low. Had I gone to the Dead show the night before, I would almost certainly have caught something spending time around 72,000 people, not all of whom are known for being excessively particular about hygiene.

Even though my white cells were low, my hemoglobin never dipped below 9.8—well above the critical 8.0 level. Keeping my hemoglobin above 8.0 was important because it meant avoiding a blood transfusion. The majority of the patients on my treatment regimen require a transfusion at some point—some as early as the first two treatments. For this reason, getting the news that I had achieved my goal of avoiding a transfusion was easily the best news of the week.

Unexpected Uncertainty

After the final treatment, I had to wait 5 weeks to repeat the PET and CT scans to confirm what I already knew in my heart—that the tumors were gone.

I scheduled the scans for this past Monday, Aug. 3 in between a 6am conference call with one of my colleagues and an afternoon coaching meeting. For the past month, I’ve had visions of posting the most recent PET scan with a note that said something like, “This is what a clean PET scan looks like.”

I could still do that, but I’d have to borrow someone else’s.

All joking aside, the news is still good.

On Thursday, I met with Dr. Gordon, the oncologist, to review the results. There is one small area in my chest at the site of the largest tumor that is showing some activity on the PET scan. This is not unusual and happens in about 1/2 the cases. Dr. Gordon estimates the likelihood of it being anything abnormal is around 5%. However, he shared the scans with a thoracic surgeon and they collectively decided the safest and most conservative course of action is to do a robotic procedure to go under the sternum and either biopsy or remove the area entirely. Odds are it is my thymus gland regenerating, but everyone wants to be sure.

The thymus gland usually stops working after puberty, but has been known to kick back into action after chemo. Since it is something most people can and do live without, the goal is to remove it. From what I understand, there will only be a very small incision so recovery time should be minimal. However, they will be keeping me overnight for observation.

The doctors want to do the procedure as soon as possible and have scheduled it for Friday, Aug. 21.

The Latest Lesson

After visualizing completely clean scans, receiving the news about chest surgery, robotic or otherwise, came as a surprise. However, I must say I prefer this to the other possibilities. One option was radiation—a treatment neither Dr. Gordon nor I have any interest in pursuing. The other option was to wait a few months and repeat the PET scan. Realistically though, that doesn’t make any sense. First, there is a strong possibility the PET scans will continue to show activity for some time—even if the cell activity is normal (i.e., thymus regeneration or healthy cells removing necrotic tissue and forming scar tissue at the site of the largest tumor). Second, it extends the uncertainty almost indefinitely. Lord knows I don’t need lessons that last that long. At least I hope the Lord knows that.

When Dr. Gordon first talked about the robotic procedure, he said the goal was to do a biopsy. At that point I asked, “Given how small it is, wouldn’t it make more sense to remove whatever it is?”

That’s when he said, “Actually, that is the goal, but we won’t know until we get in there if that’s possible. It depends exactly where and what it is.”

In a way, it is fascinating that the soonest the procedure can be done is August 21 because the results probably won’t be known until sometime the following week. This means there will be at least three weeks of uncertainty from the scan results this past Tuesday to the surgery results the week of August 24.

Therein lies the lesson.

By bookending this Unexpected Journey with extended periods of waiting, I have been given the opportunity to experience and redefine who I am in the face of uncertainty. I wasn’t expecting to go through this again so quickly. Nevertheless, I am excited because it gives me another opportunity to practice being kind and compassionate rather than short-tempered. I remain optimistic knowing the surgery is being done out of an abundance of caution, but I’d be lying if I didn’t say it scares me at times.

In a way, this latest aspect of the journey is quite timely because my main goal all along has been to maintain the positive energy and higher level of optimism I’ve experienced over the past few months. But lately, there have been moments I felt myself slipping into negativity.

At times like these, I think about Fr. Michael Ford, a Jesuit priest at Holy Cross where I went to college. He used to say, “God draws straight with crooked lines.” I love that concept, not because it provides an excuse for bad behavior, but because it acknowledges the importance of experiencing what we don’t want in order to focus on and appreciate what matters most.

Synchronicities and Random Observations

  • I love the way the Universe provides what is needed in the form of people, lessons, and insights. The morning after I received the news about the PET scans, I had the privilege of seeing Rachael Mason, the Director of Advanced Improvisation at Second City, lead a workshop. One of her key lessons was about the importance of getting comfortable being uncomfortable. How timely.
  • I love the fact that my phone inexplicably had “Happy Birthday!” in the calendar for August 3. Although my actual birthday is February 18, August 3, the day of the PET and CT scans, was definitely a new beginning.
  • One of the highlights of the past few weeks was seeing my dear friend, Amy Harris, at the gym. She looked at me, smiled, and said, “No one does cancer like you do.” I love that.
  • My theory about the watery eyes and a nose that runs without warning being related to the absence of eyelashes and nose hair turns out to be true.
  • I don’t know who said it first, but the following quote sums up one of the many reasons I am so grateful for the love and support I’ve received from family, friends, and complete strangers:

“When ‘I’ is replaced by “We”, even Illness becomes Wellness.”

  • I find it odd that right around the time I was feeling the best I’d felt in weeks, I started to look sick for the first time. When I began losing my eyelashes and part of my eyebrows, I developed the odd, hollow-eyed “sick look” I always associated with people who were going through treatment. It’s difficult to describe how strange it is to look in the mirror or see a photograph of a sick-looking version of yourself. Not my favorite part of the journey.
  • Whenever I think about the many nurses who took such great care of me at Prentice, I am overwhelmed with gratitude. One of my favorite moments from the last treatment was the nurse who took care of me the first night. Not long after her shift began, she walked in and said: “This is the best room. Great music. A guy who can sing. What else could a girl ask for?”
  • My other favorite quote came from Annette, my very first nurse at Prentice. Annette posted a picture of me with a few of the beautiful and amazing nurses along with a lovely note:

nurse pic annette post mid July 2015

I will remember these words forever as a reminder of the incredible people who cared for me and as proof I can face uncertainty with positive energy. But I must say, I am very clear I am not doing this alone. And for that I am eternally grateful.

© Rob Sullivan Productions, Inc.