What follows is Part 4 of my journal describing my successful journey recovering from lymphoma in 2015. This was originally posted on Facebook to keep friends and family up-to-date and entertained.
By Rob Sullivan April 5, 2015 at 11:21pm
“How are you doing? Really.”
This is the one line email my dear friend, Shenoa Robinson, sent a little over a week ago. I smile whenever I think of it because it expresses, quite directly and succinctly, a nice combination of concern and skepticism that somehow I’ve protected friends and loved ones from the less pleasant aspects of my current experience.
What I said in the last update about being the happiest I’ve ever been is even truer now than it was before.
I wish I could say there have been no side effects whatsoever, but that wouldn’t be honest. Nevertheless, what I have experienced has been quite manageable. In the same spirit of transparency with which I started this journey, this provides a look back on what has happened since the last update. I’m thrilled to report that the road continues to be marked with unimaginable amounts of support and laughter.
Bone Marrow Results
Medically speaking, the best news of the past few weeks came in the form of the official test results that showed the lymphoma has not spread to the bone marrow. Although the results have no impact on the treatment, the psychological benefit of knowing the lymphoma is Stage 2 and not Stage 4 cannot be overstated.
In addition to taking a host of antibiotics and an antifungal to bolster my immune system, I now get my blood checked on Mondays and Thursdays to monitor about 30 different measurements including cell counts, hemoglobin, protein, and phosphorus levels. For the most part, my counts have been great and in the normal range.
Treatments 1 & 2
When I left the hospital on Tuesday, March 17, after the first of six 5-day treatments, my next stop was the clinic at Dr. Gordon’s office where I received an injection of Neulasta. Neulasta is important for people undergoing chemotherapy because it stimulates bone marrow cells to divide more rapidly, thereby increasing the number of white blood cells in circulation. But it also has side effects. Specifically, Neulasta causes bone pain in 30% of the people who take it.
Being optimistic by nature, my first thought was, “Great! I have a 70% chance of not having a problem.”
My dad, who tends to be a touch more realistic and practical, challenged my optimism with a thought-provoking question: “If you knew that 3 of every 10 planes that took off from O’Hare crashed, would you fly?”
Ok. Maybe not.
Fortunately, this was a purely theoretical discussion because it was discovered by chance that taking the antihistamine Claritin the morning before, the morning of, and the morning after a Neulasta injection eliminate the risk of bone pain in most people. No one knows why it works. But it does. And I am deeply grateful to the people who made the discovery.
The Week After Treatment 1
The strangest effect from the first treatment was gaining 13-pounds of water weight in a 36-hour period. Fortunately, that situation was remedied with an infusion of Lasix, a diuretic that works almost instantly. By the time I returned home on Tuesday, March 17, the extra weight was gone.
The first chemo treatment reduced the pressure in my neck and chest so much that I only noticed slight discomfort once or twice between treatments. The only other side effects were fatigue and a strange stomach cramp. The fatigue has been manageable in the sense that I am learning to work around those days when I find myself needing a nap. The stomach cramp was different. That lasted three days, stayed in exactly the same spot, and intensified when I ate.
After doing my best to stick to the new diet, I decided I needed a cheat night. Not coincidentally, that proved to be the only night my stomach cramp rose beyond the level of minor annoyance. My friend, Ross Parr, and I decided to hit Turquoise Cafe to satisfy my craving for Lahmacun, a very flavorful Turkish dish, along with a side order of my favorite fries in the city.
After dinner, Ross went home to work on his taxes while I drove up to Martyrs’ to see Start Making Sense, a Pennsylvania-based Talking Heads tribute band. The more people crowded into the venue, the hotter the place became and the more my stomach seemed to bother me. I knew it was bad when the band launched into The Great Curve, one of my favorite Talking Heads songs, and the sweat started to bead on my forehead. A little more than halfway through the song, I felt faint enough that I said goodnight to my friend Melissa and her two friends and headed home. Melissa offered to make sure I got home safely, but I didn’t think it was necessary. I also didn’t want her to miss a night out with friends.
There was a brief moment on the way home when I questioned my judgment, but continued to pound Tums and arrived home about 15 minutes later. Strangely, the stomach ache only bothered me when I was sitting or standing. Fortunately, sleeping on my back wasn’t a problem. That was truly a gift because it allowed me to get a good night sleep.
Treatment 2, which is a little more than ¾ of the way complete as I type this, has been an almost exact repeat of the first despite a dose that is 20% higher. It’s also been even more fun than the first time around since the 15th floor of Prentice is now filled with so many friendly, familiar faces. Everyone is incredibly nice and upbeat, a feat I find amazing considering the number of serious-looking leukemia and cancer cases on the unit.
Corrine (pronounced kahr-in) is the nurse who had the joy of welcoming me to unit and caring for me for the first 90-minutes until her shift ended at 7:30pm on Thursday. One of her first tasks was to walk through an intake questionnaire that asked a wide range of questions clearly designed to assess a rapidly deteriorating mental state and a massive degree of hopelessness. Hopelessness is so far from what I’m feeling that I had a hard time taking the survey seriously.
Toward the end of the survey, Corrine asked, “Do you utilize a visiting nurse, special services, assistance, or care at home?”
No longer able to fake interest or remain serious, I looked at her with a completely straight face and said, “No. But I’m thinking about getting an au pair. Or two.”
In that moment, Corrine perked up and asked, “Oh, do you have kids?”
I replied, “No. That would just be for me.”
Corrine never took her eyes off the computer, but I would love to know what was going through her mind in the few awkward seconds that followed.
First Night Highlights
After the survey, the next highlight was a two-minute visit from an Eastern European woman with short dark hair who stopped in from hospital cafeteria around 7pm. I didn’t catch her name, but she definitely made me smile. As she left the room, she paused outside the door, gave me a somewhat startled look, and said with complete sincerity, “This room is very happy. Seriously. It’s like radiating in the hallway.”
What a nice reminder of the very real power of positive energy.
I was still smiling 45 minutes later when Annie Ratterree, a gifted travel agent and wonderful friend who plays beach volleyball with me on Sundays, showed up with Erin Garzón, Mario Garzón Campuzano, Dan Stumpf, and Matt Swanson. It’s hard to imagine a happier way to kick off a 5-day stay in the hospital.
As it happens, the hardest thing about being in the hospital is getting sleep. To prevent less mobile patients from getting bedsores, the beds are programmed to adjust every 30 seconds. Literally. It’s a bit like being on a boat. After a night or two, it’s barely noticeable. But the first night can be a challenge.
It can also be hard to sleep because the nurses come in every two hours to test the port in my chest to make sure it is still working properly. That might seem excessive, but the chemotherapy would cause some severe reactions if it were to leak outside the vein. When I asked one nurse to define “severe” she said, “In five years I’ve never seen it and I don’t want to.”
Well, ok. That’s good enough for me. Wake me up as often as you need to. Heck, throw in a few extra port tests if you feel inspired.
Considering that three of the six chemotherapy drugs I’m on have hair loss as a side effect, I knew there would be no escaping it. I also knew I didn’t want to watch the hair on my head thin and fall out. I’m strong. But I’m not that strong.
Knowing I’d never quite be ready, I chose Sunday, March 22, as the night I’d shave my head. The day before, I searched the cabinet below my bathroom sink on a whim and was surprised to find a hair trimmer I don’t recall purchasing. Although I couldn’t find a charger, the trimmer worked for almost an hour the following night while I stood freezing on my back porch watching clumps of my hair blow across the deck. When my fingers couldn’t take it anymore I went upstairs, jumped in the shower, and almost finished the job with a razor. I say almost because I truly believed I shaved it all even though I wasn’t using mirror. That wasn’t exactly the case though.
When I stepped out of the shower and saw myself in the mirror, I burst out laughing. There were patches of relatively long hair on the top and back of my head I had somehow missed. I thought about taking pictures but knew this wasn’t something I could unsee or easily forget. I do, however, regret that I completely forgot to stop and give myself a Mohawk on my 90-minute journey to baldness.
Knowing that she always makes me laugh, I decided to send one of my first hairless selfies to Amy Karasick. That proved to be a good choice because it was only a matter of moments before I started getting texts with hairy emoticons. If you haven’t seen a hairy yellow smiley face, trust me, it’s a strong argument for baldness.
For the most part, I’ve grown accustomed to being bald, but it’s still somewhat of an out-of-body experience to walk past a mirror and not recognize myself. It’s also fascinating to see that not all of the hair on my body has been impacted by the treatment. As of April 2, for the first time since I was 14 or 15, I no longer have to shave my face. In addition, most of the hair on my head has stopped growing–except my eyebrows and eyelashes.
Strangely, the hair on my arms and legs remains intact even though it’s fallen off everywhere else. Just the other day I was drying myself off after a shower and thought, “Hey, I don’t remember shaving my armpits.” This was a particularly odd thought given that I’ve never once shaved my armpits. That’s when I realized it fell out on its own.
In case you’ve lost track, that leaves me with the head and torso of a prepubescent 12-year-old and the arms and legs of a missing evolutionary link. If you see me and happen to notice–and it would be hard not to–feel free to tease me. I think it’s hilarious.
© Rob Sullivan Productions, Inc.