Our family doctor, Gil Holland, ordered an ultrasound and thought that possibly we were looking at gallstones. But the results came back with a growth attached to my pancreas and lesions on my liver. The lymph nodes surrounding my aorta were enlarged. Unfortunately, Gil was called away before he could interpret the results and his usually able assistant inherited the unhappy task of informing Sandra and I. We don’t remember exactly what she said, but both of us left the doctor’s office knowing three things: first, we had been referred to on oncologist and had an appointment for 4 p.m. the next day; second, if this was stomach cancer I had precious little time to get my affairs in in order; and third, that life as we had known it had suddenly, and irrevocably changed.
That night and the long slog toward 4 p.m. the next day was the worst of times. Reliving the emotional roller coaster here serves no real purpose. But I will say that the fear and uncertainty of our situation was blessedly balanced by the love we shared, our absolute commitment to working through whatever was coming our way. And San and I knew that we have a very strong network of family, friends, and colleagues that would be on our side, offering whatever help they could offer. Our son, Nic, first and always foremost in our thoughts, would be the strong center of our world and while it would be hard to tell him the bad news, the good news is that we knew he could and would handle it with his usual caring, compassionate, and mature way of being in the world.
We are a lucky family. And I am a lucky man.
Dr. Rohit Sud is a young South Asian oncologist from New Deli who was trained at Cornell and the University of Rochester/Mayo Clinic before settling down in Chandler, Arizona at the Four Winds Cancer Center. My first impression of him was of a handsome young fellow who carried himself with confidence and compassion, an impression given additional weight by the warmth and firmness of his handshake and his ability to maintain eye contact with a scared man and his equally anxious wife.
I cannot tell you how important the first visit to an oncologist might be for you, but I can say that for us the entry of Dr. Sud into our lives was a Godsend. He spend a full hour with us, just talking about who we are, our life experiences, what we fear most about this disease, what he knew about it so far and what tests he had ordered to get better information, and a host of other concerns, small and large, that revealed a physician who listens, who cares about what he hears, and who understands the vital importance of story to the information that needed to be addressed.
But the Godsend part went deeper than that. Turns out that Dr. Sud, while at Cornell, was part of a new NIH study of the role of patient narratives in oncology. He had learned that cancer was not simply a disease that attacked cells, but one that also attacked who we are and the story we tell about our lives. To create an effective relationship with a patient was finding ways to connect his story to ours and vice versa. And so it was, in that first amazing hour of speaking our personal truths to the power of cancer in order to resist letting the disease dominant our lives, we became more than patient/doctor; we became acquaintances who could see a friendship and a good working relationship, in our immediate futures.
I am a lucky man.
For the next two weeks we underwent a series of five CT-scans, a liver biopsy, a lot of blood work, and began a new regime of anti-nausea and anti-pain pills designed to improve the quality of my daily life. The tests were performed mostly at Chandler Regional Hospital and again I have to say that San and I have felt nothing but support, caring, and professionalism from the staff and physicians.
There were two small glitches. After my liver biopsy I bled and that required an unanticipated overnight stay in the hospital that was a harrowing event because my blood pressure was difficult to control. I add only that I have never had a blood pressure problem. I am a generally healthy person, overweight in the American style, but still able to walk anywhere, work out occasionally, and do pretty much whatever I want to unassisted by medical science. So this blood pressure event was startling, but by dawn’s early light, manageable.
The second glitch was my own fault. At some point in the overnight stay I placed my specs on the nightstand. Someone carried away the dinner tray, and with it, my glasses. Despite a search and rescue operation joined by staff and family, those glasses are gone. I have some backups, but their prescription was filled when Bill Clinton was in his second term, so you can imagine that I am very much looking forward to getting fitted with a new set in the near future.
Finally, all the test results were back and Dr. Sud scheduled another meeting to discuss his recommendations. In the interim, however, he was more than generous with our two close friends who are also doctors, and their favorite oncologists around the country, and Dr. Sud had phone conversations and consultations with them that brought even more professional support for our team. The openness to share our information—which I had fully approved—was another sign that we were working with the right people. More importantly was that all of them agreed on an aggressive treatment that had shown some signs of major success in prolonging what is usually a 3-6 month life window to at least a year, and in some cases, longer.
The treatment is scheduled for a six month cycle of chemotherapy that begins with an all-day frontal assault on the enemy on four separate but related fronts—new cancerous cells, old cancerous cells, cells that are building, and cells that have yet to be borne. Combined with these drugs are IV fluids, anti-nausea, and other drugs designed to help me feel “normal,” or at least as good as I can feel under the circumstances. At the end of that first all day treatment I was fitted with a chemo fanny pack to wear 24/7 for three days. When the pack is removed, I am told to expect a day or two of extreme fatigue, but that should dissipate as my white blood cells begin building up again. Which they are supposed to do right up until my next all-day chemo treatment. So, essentially, it is a one-week on, one-week off regime until mid-November. Then, we reassess.
Somewhere along this journey into Cancerland I will have good days and bad days, probably lose my hair, and other side effects that will need to be addressed, one way or the other. For my part, I have promised myself to try to maintain a positive attitude, to seek joy in the every day, to delight in every day, and love those who love me with all that I have in me. I also am so grateful for the outpouring of well wishes, strength, humor, and friendship from my pals on facebook, colleagues at the university, and a host of people who offer prayers.
I am a lucky man.
The really good news is that I passed through the first round of chemo/fanny pack/fanny pack removal and return to regular life with nothing attached to my “port” in good shape. No negative side effects! Hurrah! Dr. Sud and his staff were heartened by my response to the chemo and while every cancer case is unique, my body’s ability thus far to cope with the drugs is generally a very good sign.
Everyone here cheered! San is much relieved, as she is bearing the weight of emotional and physical and psychological support, as well as organizing what under normal life circumstances would be a full load—moving us into a new house, organizing the removal of our stuff from the apartment and into storage, shopping for groceries and working with Tori (our wonderful niece who came to help out), Nic, and Alyssa (Nic’s girlfriend) to make my life easier and more filled with humor and good conversations about something other than illness.
I am a lucky man.
That said, there are differences in my stamina that cannot be ignored. My shower today exhausted me. But after a little chair sitting in the living room reading the news, the tiredness passed. That’s when I added today’s lines to the diary. My doc told me to expect that days 4 and 5 after the all-day chemo workout would cause extreme fatigue, so this development isn’t news to my head, only to the rest of me. But hey, I’ll take a little tiredness and be thankful that is all I am dealing with after the first round.
Today is our 22nd wedding anniversary. Hurrah!!! When I think back on those times I have a big smile on my face and still hear the reggae band playing “Here Comes De Bride” down in Jamaica, where we were wed. The interim years seem now to have passed quickly but in my head I can slow them down like an old news reel to focus on small miracle that is everyday life with the ones you love, the ones who define not only identities but ways of life and habits of being in this world.
No good marriage isn’t tested and no great marriage doesn’t survive those tests to emerge stronger and more resilient. Ours is one of those great marriages, which is another reason—and a rather large one—that I am such a lucky man.
Here’s to another year of married life! Cheers!