"Cancerland" is Erick's word to describe the cancer infusion center. It's a place comprised of one part hope, one part dread. The scene looks exactly like it does on television and in movies. Rooms filled with recliners, IV stands, nurses who really know what they are doing, and patients (who are mostly a lot older than I am) settled in for a few hours of reading, playing cards, checking their various electrical devices, or visiting with a partner or friend ... and, of course, treatment.
Before Thursday I had only imagined Cancerland as I was getting my passport stamped at all of the stops that lead you to this destination. The blood draw lab. The imaging centers. Radiology. Medical buildings full of people dedicated to treating cancer patients and cancer patients only. I've handled all of this in stride. But, there was something different about walking into the infusion center. I had to hold back tears as the nurse gave me the grand tour -- the bathrooms, the snacks, the rules, the book exchange -- I was really here, really being treated. I really have cancer. There was simultaneous feeling of relief that this day had finally come and of sadness that I had to be there in the first place. I was in Cancerland ... as a patient. It was the most real and surreal moment of this experience so far.
Before arriving in Cancerland that afternoon, the day started with what we've now termed "the bloodletting." I am in a clinical trial, so in exchange for getting access to treatment that has shown to be more effective than those already blessed by the FDA, I have volunteered myself for more poking and prodding than the average bear. This means more frequent scans and, as it turns out, more blood taken in the name of medical science. I am not exaggerating when I tell you they filled 18 vials with my blood. Twelve for research, six for my doctor. Even the phlebotomist was shocked at how much work we had to do together ... she actually called my doctor's office to confirm that the order was right. When we finally finished, she told Erick to take care of me and make sure I drank plenty of water because she took so much blood. Super comforting.
After this scene we headed upstairs for an appointment with the Guru Oncologist, who, by the way, continues to live up to his nickname. The purpose of this appointment was to earn his blessing for my treatment later in the day and for him to prescribe the exact doses of the drugs for that treatment. The visit entailed him taking a look at my labs, a physical exam and some time to answer questions. Important questions like, "how soon can I expect to feel side effects?" and "can I ride roller coasters?" The answers to which are, probably in a couple of weeks, and no, respectively. Scratch that trip to the Santa Cruz Boardwalk off our list of weekend plans.
It also involved a neurological exam to ensure my brain tumor isn't having any impact on my cognitive function. It was this part of the exam that made me nervous. I knew ahead of time that it involved having to spell words backward and do subtraction. There is something about knowing you are going to have to do these things on the spot, and that wrong answers will exclude you from treatment, that gets the nerves working overtime. Seriously, you try to spell "world" backward or subtract seven from 93 in front of a doctor and a clinical trial coordinator on the spot. It's not as easy as it sounds. The good news is that all the years of dealing with questions from reporters seem to have prepared me to deal with performance anxiety and I passed the test ... whew, what a relief.
From there it was to lunch (at an excellent falafel place by the way) before heading off to Cancerland. The visit started with picking my treatment chair because in Cancerland you can choose the room and chair in which you'd like to spend your time. I went for one in a larger room toward the back of the center. After that there was the aforementioned tour guided by a nurse who clearly copes with the stress of her job through humor, which I appreciated greatly. Tour completed, she got me all set up with my IV line, which was in my forearm. Then we waited for the drugs to arrive from the pharmacy.
While we were waiting, I started to look around the room, to observe my fellow companions in the detour through Cancerland. Of course that also meant eavesdropping on their conversations. Don't judge, I don't think it even qualifies as eavesdropping when you are sitting 15 feet from each other. Two of the other three patients in the room were comparing notes on their own treatments for Stage IV melanoma. Turns out we're all patients of the Guru Oncologist and it sounded like one of them was in the same clinical trial. I wanted to talk with them, but being the new kid on the block, I didn't really know what to say. Despite this, there were knowing looks exchanged between the three of us after they learned I have the same affliction. Maybe next time I will find my voice. Then again, maybe I didn't need to say much, in a strange way we all speak the unspoken language of a fellow traveler on the same road, and hopefully to the same, much-desired destination.
Once the good stuff got there, the funny nurse and another, more serious nurse confirmed that we had the right drugs, in the right doses, before they started to pipe it in. I really appreciated this attention to detail. Being infused with someone else's chemotherapy or immunotherapy isn't like accidentally taking someone else's prescription for antibiotics or pain killers. Yes, please make sure you are giving me the drugs for melanoma, and not in the dose for the 220 pound guy across the room!
My treatment involves the infusion of two different biologicals or immunotherapies called Ipilimumab and Nivolumab. These drugs are not chemotherapies. In fact, they work completely differently. In essence, they act as agents to transform your immune system, specifically your T-Cells, into cancer fighting agents. Or at least in some patients they have this impact. Let's pray I am one of them.
Due to the nature of these drugs, the side effects don't necessarily develop right away because it takes some time to get the immune system revved up. In this way treatment is also very different from chemotherapy. Most patients experience skin irritation (i.e. a rash), fatigue and flu-like symptoms. Outside of that there is a menu of other possible side effects, some of which are common, some less common. One symptom that the doctors are particularly concerned about is colitis, which can be life threatening and force patients out of treatment. There are other possible delights, like needing to go on full hormone replacement therapy. We hope and pray whatever side effects do materialize for me, they are manageable.
Anyway, back to Cancerland, where we passed the three and a half hours waiting for gravity to pull the drugs through the IV line by reading ... ok, I had a book on my lap, but the truth is mostly I was on Facebook and Twitter. That involves reading. Erick worked. The only pain I felt the entire time was when they took the tape off my arm to remove the IV line.
This first phase of treatment will include three more infusions of the two drugs, each separated by three weeks. Assuming, of course, that I tolerate it well. After that, I will have just one of the drugs infused every two weeks, which will last for as long my doctor believes it's working for me. On the off weeks I will still see the Guru Oncologist for what they call "safety checks." Perhaps I could help them with their branding ... I am thinking "wellness checks" would be an improved name, especially for already stressed out cancer patients!
Of course there will also be scans. In my case these will come every six weeks. The Guru said it may take up to three months before the scans tell us the answer to the real question: is it working? And, if the answer is no, the next question will be what's next? Until then, it's off to Cancerland where I now have at least a 90-day visitors visa. Perhaps on the next visit I will even find the nerve to strike up a conversation with my companions in this detour, my compatriots in this battle.