Here is installment 5 of 11 from An Unexpected Journey. This was originally posted as a Facebook update on April 25, 2015 to keep friends and family up-to-date and entertained.
By Rob Sullivan
It’s 8:45am on a gray, Chicago Saturday morning. Looking out my window from the 15th floor of Prentice, I realize I’m not missing any great outdoor activities today. So, it’s as good a time as any for an update.
I am amazed how quickly time is going by on this journey. It seems like only a few days ago I was in emotional knots waiting for a diagnosis and already I’m within a day of completing my third (of six) five-day inpatient treatments.
The Second and Third Treatments
The second treatment was relatively uneventful until the morning of the last day when Erin, the charge nurse, came in for a 5am check of my vital signs. At the same time she checked my blood pressure, Erin connected my index finger to the pulsox, a device that looks a lot like a band-aid with a bright red light embedded in it to measure oxygen saturation in the blood as well as my heart rate. When Erin saw that my heart rate registered only 40 beats per minute, she said, “That can’t be right. I’ll check it manually.”
Moments later, standing in the dark with her fingers on my wrist and her eyes on her watch, Erin exclaimed, “Wow! That IS right. I’m getting 40 this way too.”
Concerned that my resting heart rate was a bit too slow, she paged the doctor who ordered an Electrocardiogram (EKG). They would have been more concerned if I had been dizzy or fatigued, but fortunately I felt fine. Within the hour, the EKG, which is a lot more accurate than the pulsox, measured my resting heart rate at 37. That low number was enough to buy me all day heart monitoring with a portable unit. As it turned out, it wasn’t a big deal. For reasons I don’t completely understand, it’s not unexpected for people who are in good shape to have wide fluctuations in heart rate and blood pressure—particularly with some of the medications I am taking. Fortunately, there were no other surprises and I went home as expected when the treatment ended on Tuesday, March 6.
For the most part, I feel great and alert while I’m in the hospital. Then, right before I get discharged, I receive an hour-long infusion of cytoxan, the last chemo drug they administer after four days of a three-drug cocktail. I don’t know if it is the cytoxan or the cumulative effect of the treatment, but I feel almost immediate fatigue when I leave the hospital and for a day or two afterwards. Later, on the fourth or fifth day following the treatment, the stomach cramps start.
After the first treatment, the stomach cramps lasted three days and intensified when I ate. After the second treatment, the cramps, which were a bit more intense, lasted about five days. What I learned from this is the importance of keeping the doctors updated about side effects. I thought the cramps were normal and expected. As it turns out, the Irritable Bowel Syndrome I’ve experienced is exactly opposite of what most people encounter. Now that we know this, the doctors have prescribed Bentyl to alleviate the issue. I’m hoping it helps.
The only other side effects are neuropathy—a tingling in my fingertips—and stomach bloating from the steroids. During the first treatment, I gained 13 pounds in 36 hours. This time I’ve put on 16 pounds in four days. It doesn’t hurt at the moment, but it’s odd to see my ankles and belly so swollen. It looks and feels a lot like the food baby one might get after over-indulging except it lasts five days.
I’m not going to pretend I’m enjoying this aspect of the experience because that wouldn’t be true. However, I do find tremendous comfort in knowing I’m one of the lucky ones. Walking past the rooms on this unit is a constant reminder that most of the patients seem to be in much more serious condition.
The Confusing Adjectives of Disease
When I first heard the adjective “aggressive” as part of the official diagnosis (Aggressive Primary Mediastinal Non-Hodgkins Large B-Cell lymphoma, Stage 2), it sounded quite ominous. Fortunately, that isn’t the case. The tumors were aggressive in their rate of growth, but that was actually good news because aggressive tumors are often easier to treat. The drugs used to treat lymphoma act on rapidly growing and multiplying cells. For this reason, an active, fast growing lymphoma is more susceptible to treatment than lung cancer or some of the slower growing tumors. With a slow growing tumor, if you don’t happen to be receiving treatment while the cells are replicating, the drugs won’t be effective.
Just when I thought I was beginning to understand some of these distinctions, one of the nurses told me about a friend of hers who had been diagnosed with Acute Leukemia. “Acute” in that context sounds a lot like “aggressive”, but unfortunately it isn’t. Acute as an adjective describing leukemia is very bad news.
While I have no interest in becoming an expert on any of this, it remains a good lesson in asking questions because every condition is different. And every prognosis is different. Even patients with the same diagnosis can respond quite differently to treatment. Some of it may be due to a person’s attitude. But a lot may be due to factors we don’t yet understand.
Visualizing My Way Through the Next 3 Treatments
Now that the tumors are all but gone, the question that immediately comes to mind is why it would be medically necessary to not only undergo three more treatments, but also to increase the dose another 20% each time for the next two treatments to the point where the fifth and sixth treatments will be more than double the dose of the first.
This protocol is based on the studies that have been done to date. The complete treatment regimen used to be 8-10 chemo treatments plus radiation. Now, it’s down to six treatments with no radiation when the tumors melt away as quickly as they did in my case. I’m sure at some point they’ll have statistics to support fewer treatments. In the meantime, I’m doing my best to remain coachable and stick with the treatment plan that has the highest likelihood of a complete cure. After all, I have no interest in repeating this adventure.
Considering how well the visualizations, prayer, and positive energy have worked so far, I humbly request anyone so inclined to direct their focus to helping my stomach and intestines settle down. It would be wonderful if the neuropathy improved as well. This, along with the complete eradication of any remaining tumor cells, is what now gets my attention, energy, and focus.
The third treatment started early Wednesday morning, April 22, with a rapid, 90-minute infusion of Rituxan. I am happy to report the rapid infusion—compared to 5 hours the first time and 3 ½ hours the second—went well. Better still, a woman came by and surprised me by offering acupuncture. Nice.
Fun On The Unit
During the second hospitalization, the white board with treatment notes posted in my hospital room inspired my brother, Bill, to start a trend by writing in his own irreverent comments. The board has categories for basic information like the day, date, and room number, as well as the name of the nurse, doctor, and Patient Care Technician (PCT) on duty. It also captures patient specific information like height, weight, diet, today’s goals, mobility plan, and pain plan. Here are a few of my favorite entries from Bill:
- Day: Today (Let’s try to be in the moment. Namaste.)
- Date: Whenever you are free.
- Planned Activities: Walk. Irritating Annette.
- Pain Plan: Safe Word = “That tickles.”
- Today’s Goals: Fret over my inadequacy less.
The safe word is my favorite by far. It’s so not very Christian Grey.
For this third treatment, I decided to get a little more aggressive with Today’s Goals:
- World Peace
- Inspire Annette to exceptional levels of patient care.
- Patience (see #2)
Next time, I’ll use “Today’s Goals” to lobby my favorite nurses for a group sponge bath whether I need one or not.
Random Moments and Observations
- I’m still in awe about how quickly the tumors melted away. If you haven’t seen the before and after PET scans I posted earlier this week, take a look. It’s amazing.
- Every time I check in at Dr. Gordon’s office or the hospital, the staff asks, “Are you still on Bishop Street?”
“Well, yeah. This isn’t a particularly good time to move.”
- When I finally got a chance to catch up with my dear friend, Sue Davis, I had to give her a little friendly grief for the Facebook birthday greeting she sent: “Happy Birthday, Buddy! Hope there is a surprise somewhere in your day.”
Sue’s message arrived about the same time Dr. Becker called to deliver the news about the tumors in my chest and neck–not the surprise I was hoping for at all. Having known each other for so long, I knew I could safely tease Sue about the importance of specifying
a pleasant surprise in the future.
- I find it fascinating how many thoughtful friends, concerned about side effects, have stepped forward to offer high quality pot and hash should the need arise. I had no idea so many people I know suffer with nausea [smile].
My Hairless Life
- Getting used to a hairless head has taken longer than I thought. It took more than two weeks before I stopped doing a double-take upon seeing my reflection. What I haven’t been able to do is break habits like reaching for the shampoo or rubbing my head with a towel after a shower the way I did when I had hair.
- I must admit, I love not having to shave.
- Considering the number of men and women who spontaneously told me I look younger without hair, there is an excellent chance the hair on my head is gone for good—even after it begins to grow back on its own.
- As of now, I still have eyebrows, eyelashes, and hair on my arms and legs. I hope it stays that way.
- It cracks me up how many people have asked to rub the top of my head. If you feel the urge, go ahead. I never saw myself as an attraction at a petting zoo, but I’m comfortable in the role.
Every time someone rubs the top of my head, I am reminded of my all-time favorite Facebook status update from my friend, Alan Tecktiel: “Sadly, my plans to open the world’s first ‘Heavy Petting Zoo’ were rejected by the Village Board.”
- I used to think guys who wore ski caps all the time were insecure about hair loss. Now I realize that maybe, just maybe, some of their heads were cold.
© Rob Sullivan Productions, Inc.