Here is installment 8 of 11 from An Unexpected Journey. This was originally posted as a Facebook update on June 20, 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.
It’s been exactly 100 days since my first chemo treatment. Four days from now, I’ll be starting my final five-day treatment. I had considered waiting to post another update until after the final treatment, but I gave up on that idea last night when the paragraphs that have been writing themselves in my head for weeks could no longer be ignored.
In most ways, this journey, like life, has gone faster than I ever expected. It’s a journey that has been punctuated with some excruciatingly slow moments. And some moments that were just plain excruciating. But what I’ll remember most isn’t the shock of the tumor discovery, the agonizing 12-day wait for a firm diagnosis and prognosis, or the discomfort of the side effects. Instead, I’ll carry forward the profound experience of love, connection, and friendship I once thought only happened in the movies.
Part of me hesitates to make any broad assessments at this point given that the cumulative effects of the final treatment remain to be seen. But that isn’t going to stop me from sharing a few observations about the last few treatments as well as the overall experience. I’ll also include a few of the lighter moments because laughter continues to show up in so many unexpected and welcome ways.
I was going to share a few thoughts on the connections between mind, body, emotions, and disease—particularly as it relates to what I’ve experienced—but I’ll do that in a future installment.
What has surprised me most is that no two treatments have been the same in terms of side effects. Dr. Gordon and his nurse, Betsy, have been amazing in their ability to treat and control the symptoms. However, we’ve all been challenged by the fact that the side effects have been different than—and in some cases opposite of—what other patients on this regimen experience. That wouldn’t be such a big deal if the side effects were consistent, but they haven’t been. Every treatment has brought with it a new and uniquely unpleasant side effect. The last two treatments illustrate this point nicely.
In the previous update, I described Treatment 4 and how I felt well enough to go to the gym within two hours of being discharged from the hospital. It wasn’t until four days later that I experienced a level of intestinal discomfort high enough to challenge my usually optimistic worldview for almost a week.
Treatment 5, which ended two weeks ago tomorrow, was completely different. When my sister, ML, picked me up at the hospital, I felt great and seriously considered going to the gym. That plan changed ten minutes later when I walked in the front door of my house and encountered the first staircase I’d seen in almost a week. Thanks to what was probably the lowest hemoglobin count of my life, each leg literally felt like it weighed an extra 30 pounds as I labored up the stairs. Catching my breath after the nine steps it took to reach the kitchen, it occurred to me that a day or so of rest would be a healthier choice than an afternoon workout.
Unlike Treatment 4, the side effects didn’t wait four days to begin. Instead, I spent the next few days dealing with bloating and cramps that, while unpleasant, were nothing compared to earlier treatments. As those symptoms cleared, I was hopeful we had finally uncovered the formula for making the treatments tolerable.
Then the tongue pain started.
Well aware that mouth sores are a known side effect of chemo, I went to great lengths to avoid them through dental visits, fluoride treatments, good oral hygiene, and frequent rinsing with Biotene. However, the tongue pain that developed wasn’t due to mouth sores. At least not initially.
To imagine how this felt, think of a time you bit the thickest part of your tongue. Then, imagine this pain spreading the following day from the left side of your tongue to the bottom of both sides and ultimately to the top several days later. If you also imagined your tongue feeling swollen and enlarged 20%, you’d have a pretty good picture of the last week.
A firm believer in alternative medicine, I’ve been complementing the chemo with a variety of other treatments to manage the side effects. I’m quite sure it’s one of the reasons this journey has been so manageable. When the tongue pain first started, I left a message describing the symptoms with Jei Atacama, a New York-based healer I’ve worked with for years. Twenty minutes later, I was riding my bike home after having my blood drawn when the pain in my tongue unexpectedly decreased by more than 50%. The moment was so striking I immediately checked the time because I knew intuitively it corresponded with Jei’s treatment. My watch read 8:55am. At 9am, Jei’s office called to say he had treated me five minutes before. Instant results don’t always happen like that, but they are a blessing when they do.
Despite the temporary and welcome relief, the tongue pain continued to intensify over the next few days. When I first mentioned the issue to Dr. Gordon, his recommendation was to gargle with warm salt water. Doing my best to remain coachable, I gargled twice as directed even though I seriously doubted it would have any impact on internal pain that felt more like a severely pulled muscle. By the following Monday when the pain had spread to the surface, his nurse Betsy wrote a prescription for “Magic Mouthwash”, a combination of viscous lidocaine, Mylanta, and Benadryl.
Unfortunately, my first and last dose of Magic Mouthwash made it worse. Much worse.
The lidocaine made my entire mouth so numb it felt like my throat was closing. Fortunately, I knew that wasn’t the case, so I didn’t panic; I just waited for the numbness to subside. When the lidocaine wore off, the pain was significantly more intense than it had been before. It even hurt to swallow water. Anything other than the softest foods felt like glass shards cutting across my tongue. The only temporary relief came in the form of Pedialyte Freezer Pops®, my reliable, go-to source for electrolytes and nourishment when side effects are at their most unpleasant.
The following day, my tongue hurt so much I scheduled a last-minute session with Christie Jordan, a gifted acupuncturist. Like all the sessions I’ve had with Christie, she led me in a guided meditation after she and her assistant Liz placed the needles. For the next 15 minutes, I could feel Christie’s hands on either side of my head. At first, I was surprised Christie was still there and thought, perhaps, she was doing Reiki while the needles did whatever it is they do. But the real surprise came toward the end of the treatment when I realized Christie had been gone for at least 15 minutes before I no longer felt her hands on my head.
Over the past few days, the tongue pain has subsided considerably. Now that I can eat and speak with minimal discomfort, it’s at least tolerable. Nevertheless, the fact that my tongue is still somewhat sore more than a week later officially makes it the longest of the unpleasant side effects.
Fever of Unknown Origin
One of the biggest concerns doctors have with patients undergoing chemo is the danger of an infection when white blood cell counts are low and the immune system is compromised.
In the inch and a half thick notebook Dr. Gordon’s office provided before treatment began, there is a tab entitled Side Effects. On the first page behind that tab, there is a long list of symptoms that would require a trip to the Emergency Room. This includes a fever of 100.4 degrees. This may not seem high for the average person, but it is of considerable concern for people with weakened immune systems.
After noticing that my normal body temperature tends to be in the mid-96 to mid-97 range, the team at the hospital suggested I be even more conservative and report anything above 99. Given this, I could have been more vigilant about taking my temperature, but a week or so after the first treatment I quit doing it because I never felt sick.
On Tuesday of this past week, the day my tongue hurt the most, I sat on my sofa in the evening not feeling particularly well. Shortly after 8pm, I had a slight headache and began to feel sweaty so I went upstairs and took my temperature. At that point, the thermometer read 100.7. Following the written instructions, I called Dr. Gordon’s office and left a message. The doctor who returned my call asked a few questions and instructed me to wait an hour and take my temperature again. If it was still above 100.4, she said to go to the Northwestern Emergency Room.
Over the course of the next hour, my stomach started to bother me and I discovered, to my displeasure, several large sores on the underside of my tongue. When I retook my temperature at 9:15pm, the display showed 100.8. In the course of a few hours, I went from having no symptoms to having four on the watch list. The fever was enough to warrant an admission; the others merely reinforced the case.
Even though Dr. Gordon gave me his home number the first time we met, I had hoped to never use it. I gave up on that plan Tuesday night when I thought about how important it was to minimize my time in the Emergency Room waiting area. After all, it’s hard to imagine a worse place for anyone with immune issues.
When Dr. Gordon called back, he expressed concern about the growing list of symptoms and encouraged me to pack a bag for a few days because that’s how long it typically takes to track and treat the source of infection.
Ten minutes later, my sister picked me up and drove me to the ER where I encountered a waiting room jammed with people watching the NBA Finals. After giving my name to the nurse at the front desk, she said, “Oh, you’re Dr. Gordon’s patient. We’ve been expecting you. Here, put on this mask. We’ll get you back as soon as we can.”
Less than five minutes later, Jill, the triage nurse, took my vitals and went through the obligatory mental health assessment.
Important safety tip: if you are ever in this situation and the nurse asks, “Have you wanted to harm yourself or anyone else lately?”, don’t say: “Only a few drivers on the way here.” That required a little more backpedaling than I’m used to.
Once Jill finished taking my temp and blood pressure, she sent me back to the waiting room. To my amazement, a nurse on the opposite side of the room called my name less than 20 seconds later and brought me upstairs to a room.
The attending physician who examined me was genuinely surprised to hear I had made it through five rounds of chemo before having an issue with mouth sores. Many of the patients she has seen had issues from the first treatment. With obvious sincerity in her voice, she went on to say, “From what I can see, you are tolerating the treatment remarkably well. You look great.”
That was nice to hear.
A few minutes later, one of the nurses who stopped by asked unexpectedly, “Can I give you some advice?”
My heart sank immediately because it seems like those words are almost always followed by an unsolicited observation about something someone has done wrong or a behavior that needs to change. In the instant before I replied, I had visions of her telling me not to waste their time with such minor symptoms. Hoping it wouldn’t be that kind of advice and doing my best not to feel like a child about to be scolded, I said, “Sure. What is it?”
To my relief, she lowered her voice, made sure no one else was within earshot, and said, “I can’t tell you this as a medical professional, but you might want to try whole leaf aloe vera juice. It’s really helpful for mouth sores. You can get it at Whole Foods.”
Somehow she must have known how much I love those kinds of suggestions. Even though I’ve used aloe juice before, it hadn’t occurred to me to use it for mouth pain. It was a novel suggestion for Betsy as well.
After multiple blood draws, the doctors sent me downstairs for a chest X-ray. As I waited in the hall for the tech, I smiled at a frail 90-something woman being wheeled past me on a gurney. I didn’t expect a reaction given how many elderly patients seem almost catatonic. But not this lady. She perked up immediately, raised her hands to her head, shook them about six inches from either ear, and said with a heavy European accent, “You remind me of Yul Brynner…with the head.”
I laughed, but all I could think to say was, “Thank you. I haven’t heard that before.” What I probably should have said is, “Etcetera, etcetera, etcetera.”
When the initial results came back, the blood tests showed nothing conclusive. To everyone’s surprise, the fever subsided relatively quickly and I was sent home the following day. On one hand, I was ecstatic not to be dealing with an infection that required multiple days on I.V. antibiotics. On the other hand, it felt a lot like taking a car to the mechanic only to have it magically stop doing whatever caused you to bring it there in the first place.
In fairness, there’s a good chance the disappearing fever was Jei’s doing. Before I left the house, I texted Aviva and Debbie (who work with Jei) because they asked me to notify them of any change in symptoms. Jei was already asleep so Aviva’s plan was to have Jei treat me the following morning. That plan changed when Aviva texted a few minutes later to let me know Jei awoke unexpectedly and did a distance healing before he went back to bed.
Whatever the reason for the subsiding fever, I am extremely thankful because my biggest concern—aside from a difficult to treat infection—was the possibility that my final treatment would be delayed. Fortunately that isn’t the case. Eight days from now, the chemo will be over.
Random Observations and Synchronicities
- The other day, I rode my bike past the office of my friend Jillian and realized we hadn’t seen or spoken to each other in close to two years. For a few moments, I reflected on some of the coaching she’d done for me and wondered how she was doing. The following day Jillian sent me an email, completely unprompted. It really is amazing how often a psychic summoning seems to occur when people come to mind and subsequently reappear.
- The only time the land line in the hospital rings, it’s the cafeteria calling to see if I’m going to order a meal. If I see that it’s 7:10pm or one of the other predictable times they call, I don’t always pick up the phone. During Treatment 5, the phone rang one afternoon around 3pm. Thinking it was another offer for a strawberry mango smoothie (which would be good if it weren’t loaded with processed sugar), I almost didn’t answer the phone. I’m glad I changed my mind because it was my fifth grade teacher, Miss Falbo, calling to say hello. What a wonderful surprise! She sounded exactly the same. And I love the fact that she still has season tickets to the Blackhawks.
- The neuropathy—numbness in the tips of my fingers—has been noticeably better over the last week or two. I’m guessing this is a delayed response to the lower dose of Vincristine that began two treatments ago. Whatever the cause, I’m grateful.
- When I sweat, it’s a strange feeling to have it pour down from all sides of my head. When I had hair, it seemed like my forehead did most of the sweating.
- Losing most of my lower eyelashes and some of my upper lashes contributes to a “sicker” appearance that I’m not particularly fond of. My eyes are watering constantly as well. Not sure if there’s a connection.
- The 18 pounds of water weight I gained over the past few treatments didn’t seem too awful until I realized it was the equivalent of 2 large, or 3 medium-sized full-term newborns.
- My Prednisone-induced pear-shaped appearance only lasted a few days until I dropped 11 of the 18 extra pounds.
- With the exception of my endurance, which continues to decline with my hemoglobin levels, I’ve been feeling great, working out, am ready to start the final treatment this coming Wednesday.
- My favorite Facebook comment of the last few weeks came from my college classmate, John Forsythe, in response to the update I posted on June 3 at the start of Treatment 5. I laugh every time I think of it.
“Uh oh. After four treatments on the 15th floor of Prentice, they put me on 14. A whole new team of nurses to torment…um, I mean charm.”
“Rob, all good to hear and I am sure they will all be charmed. Also, while you’re going through this, please don’t start another Facebook post with ‘Uh oh’. Thanks.” [smile]
© Rob Sullivan Productions, Inc.