Prologue Part III
“How brain cancer taught me how to shift, adapt, and roll with the punches.”
Brain surgery was immediately followed by one solid week of “recovery” in the Neuro-Intensive Care Unit. I don’t know if it was all of the drugs they had me on for preventing seizures, blood clots, and pain, but I don’t really remember a whole lot of details about that particular week of my life; it was all quite literally a blur to me since my vision still wasn’t quite back to normal. It wasn’t until another week after my discharge on Monday, July 13th 2015 that I would receive my official diagnosis.
Me, Ashley, and our two mothers arrived at the Preston Robert Tisch Brain Tumor Center (BTC) at Duke early that morning for an appointment that we anticipated would be with my oncologist, Dr. Henry Friedman. We assumed that he would necessarily be the one to address our anxious family and deliver the report of what had been growing inside of my head, good or bad. Instead, however, one of his P.A.s sauntered into the tiny conference room where we sat waiting for whatever was going to happen next. The young female Physician’s Assistant, clad in her long white coat with a stethoscope draped around her neck, gazed at her clipboard as she sat down at the head of the small rectangular table at which we were sitting. She then went straight into her spiel in a slightly nervous, yet measured tone of voice: “Mr. Paonessa, your brain tumor pathology results are in. Your tumor tissue sample is consistent with a Grade IV Glioblastoma Multiforme.” Wait… I have WHAT?! A Grade IV GBM?? That’s the really BAD one from the 60 Minutes episode, right? As in… BRAIN CANCER?? “Yes, it is one of the most aggressive types of brain tumor. Yes, your brain tumor is highly malignant. Yes, I’m afraid you do have brain cancer. Dr. (Henry) Friedman wants you to know that he already has a treatment plan in place for you and that we are going to do everything we possibly can to help you overcome this…” I’m pretty sure I didn’t hear much of what she said after “you have brain cancer.”
Life for the Paonessa family instantly took a very sharp turn off of the straight and narrow road that had characterized it right up until this very moment. What were we supposed to do now? It was time for us to accept that our life as we knew it and wanted it to be was going to be different. We would have to SHIFT our vision for our life to accommodate our new circumstances; SHIFT into another gear, continue moving relentlessly forward, and see where this new road was going to take us.
(Side note: I suppose Henry opted not to deliver the crushing news himself because of the relatively close personal relationship that we have as friends, me as his personal trainer and he as my client, but to this day I have never talked to him about that moment. Some things are just better left alone.)
Right after that bombshell hit me and my family, there was a light knock on the door almost as if on cue. Henry entered the room wearing his signature white DUKE hoodie and blue jeans, arms outstretched and proceeded to give me, Ashley, and our now-grieving mothers each a big, warm, comforting hug. He then said, “Whatever you do, do NOT Google this. There’s a lot of misinformation out there and I don’t want you worrying unnecessarily. Everything’s going to be okay; I have a plan for you and today you’re going to meet with several members of my team who are going to help you get ready for the next steps. I don’t want you to think, ‘TREATMENT;’ I want you to think, ‘CURE.’”
Even though I wasn’t supposed to think, “TREATMENT,” treatments began in earnest; Henry Friedman and the Preston Robert Tisch Brain Tumor Center (BTC) at Duke didn’t waste any time. Immediately after Henry left the room that morning, his Nurse Practitioner walked in and escorted us to another room where a social worker was waiting to talk to us about available services and programs for newly-diagnosed cancer patients and their families, including local support groups and psychotherapy, which I would take full advantage of later.
We were then shuttled to another room where a specialized financial consultant awaited to address any billing and insurance concerns that we had. In yet another room, the Brain Tumor Center’s own pharmacist was waiting to discuss and answer our questions about the specific chemotherapy drug that I would be taking – Temodar.
In the next room, we were greeted by a different P.A. whom we had never met before and a “research assistant” who were tasked with going over the details of my overall treatment plan and immunotherapy trial. They also recruited me to participate in a couple of other miscellaneous studies (like effectiveness of different anti-nausea drugs during chemotherapy, and daily physical activity trends in brain tumor patients using a FitBit).
The last stop of the day was at the “Check-Out” desk, where we received a seemingly endless calendar of future appointments that were already scheduled for me without regard to my and Ashley’s own personal and work schedules – we were literally just given these appointments and expected to be there for each and every one of them. These included appointments for physical therapy, occupational therapy, psychotherapy, MRIs, lab draws, follow-up oncology appointments, meetings with the immunotherapy/research team, and DAILY radiation treatment appointments for six and a half straight weeks. Ashley and I left the BTC with a literal book of calendar appointments for the next three months (basically the entire summer and part of the fall), as well as another book of prescriptions that needed to be filled immediately at the specialty pharmacy on the first floor of the Duke Cancer Center on our way out. One of these prescriptions was for a chemotherapy drug called temozolomide, or Temodar, which nobody told me at the time would become a critical part of my and Ashley’s daily life and that our daily schedules would necessarily revolve around it FOR THE NEXT TWO YEARS!! My oral Temodar dose of pills would always have to be taken exactly one hour after some kind of anti-nausea drug, which would in turn have to be taken one hour after dinner or one hour before bedtime. Between all of the appointments that were suddenly thrown onto our schedules and all of the timed daily medication doses, Ashley and I were left with no choice but to accept and ADAPT to the new schedule and lifestyle that was thrust upon us; because that was the path that was set before us by the BTC, and that was what was required for us to overcome this new life obstacle called brain cancer together.
Ondansetron/Zofran, compazine, and the granisetron/Sancuso transdermal patch were all different varieties of anti-nausea medication that I was prescribed when the weaker drugs were no longer effective against the five-day high-dose cycles of Temodar, with the Sancuso patch being both the most effective and most annoying/inconvenient to use since I had to keep it on for five straight days and therefore needed to protect it from water and sweat (which as a fitness professional and avid exerciser is a VERY difficult thing to do). I ended up having to apply a Tegaderm hydrocolloid dressing on top of the patch to keep it dry and in place; a patch for the patch, if you will. Each Sancuso patch cost us between fifty and eighty dollars out-of-pocket, so we really wanted to get our money’s worth on that one.
The idea here was that if I were to have any nauseating effects from the chemotherapy, then hopefully they would kick in while I was sleeping and would therefore not be as noticeable. Well, during my first high-dose cycle of Temodar, I found myself rudely awakened in the middle of the night by the most severe abdominal pain and nausea that I have ever felt in my life – so severe that it brought me to tears on several occasions. This, of course, would cause Ashley to wake up too and, being the emotional wreck that she always is, would stay up and cry with me until we both fell back asleep. Each time I felt nauseous I would try in vain to fight off the urge to vomit. This usually manifested as a dramatic sequence of dry-heaves that sounded like a cat coughing up a hairball. I am proud to report, however, that during two solid years of chemotherapy treatment I NEVER THREW UP, not even a little bit! My main motivation for keeping myself from puking was that I was not willing to lose/waste the incredibly important (and ridiculously expensive!) medicine that was supposedly helping to save my life.
Oh, did I mention the twice-daily laxative and stool softener (Senna S) and antacid (Prilosec) that I also had to take to counteract the severe constipation and heartburn caused by both the chemotherapy and anti-nausea medications? So yeah, there I was pumping my body full of poison and all kinds of medications while attending almost daily medical and therapy appointments for months on end, essentially becoming brain cancer’s latest punching bag. The way I saw it, I could either give up and give in to it, or ROLL WITH THE PUNCHES and move relentlessly forward. My choice was clear, and my life would never be the same again.
At the end of the day, the Duke BTC reminds me of some kind of all-inclusive resort for brain tumor patients, except the food isn’t included, there’s no beach or alcohol, and nobody is having any fun. I remember thinking that if all of this stuff on the front end is so well coordinated and scheduled, then why couldn’t anybody give me more of a heads-up on what a major impact this whole cancer thing was going to have on our daily lives? Why couldn’t anybody warn me or prepare me better psychologically for what I was going to experience and endure later on down the road with treatments, side effects, and a drastically altered lifestyle? Well, as it turns out, it is because everybody’s cancer “journey” is wholly unique and nobody really knows what is going to happen – not even the genius doctors and researchers at the Duke BTC. All they and we can do is give our absolute best effort with the knowledge and tools that we have, shift, adapt, and “roll with the punches.”