After months of enduring those relatively, mostly small assaults on his general health – a flare up in the jaw of his temporomandibular joint disorder (TMJ or TMD), the resulting pinched nerve that has left the right side of his jaw numb, a long winter bout with a persistent cough and its recent return (for which was prescribed, with a “let’s-try-this” kind of medical certainty, an asthma inhaler and an allergy pill), increasingly debilitating fatigue, and weight loss – John’s new PCP, Harvard Vanguard’s (Davis Square) Dr. Gullapalli, connected the decreasing waistline to his blood test’s elevated alkaline level and ordered an ultrasound of his liver. Thank God!
John had been home only briefly by the time his doctor read the sonogram and saw that there were multiple lesions on his liver. Dr. Gullapalli had his nurse practitioner (NP) call John back to the office to discuss this discovery. Back in the car and driving “the convenient mile” between us and Davis Sq., John wondered what he was about to learn and, quite naturally, rejected the possibility of anything nearly as dire as that which he was about to hear. He told me later that he felt badly for the NP who seemed uneasy sharing this bad news with him. Yes, he would follow her orders.
Before heading over to Mt. Auburn for the next step, the just-scheduled CAT scan, probably holding onto a little normalcy in an hour in which so much seemed to be spinning out of control, John comforted himself with a simple decision. First things first, he would stop at home to let the dogs out, poor dears. Recently, their walk schedule has been all off.
John left the building, stepping out into a beautiful, sunny, spring Friday, one like no other. April Fool’s Day, normally, for years, the day on the family calendar during which he would savor some creative time to come up with a few original pranks to pull on his girls. But on this day, his mind, his whole being, was grappling with the shock of what he had just learned. He told me later that everything around him seemed heightened in some way. There were two little girls playing as their mom looked on, a broad smile on her face. A young couple strolled by, walking hand-in-hand. An old man, with no particular place to go, sat on a bench, his legs crossed, just watching the world go by. And “here I am, walking down the street”, John thought, “just me and my cancer”.
He got home, went upstairs, and sat down on the end of Julia’s bed. A busy young woman, she’s usually not around. He was so glad she was home. They had one of those moments together in which your father says words you never forget. She would try to get in touch with me, muster courage, drive him to the hospital, and then, text again to find me in a meeting at school. When I got to the lobby at Mt. Auburn, John already waiting his turn in Radiology, my girl, with tears welling up in her brown eyes, and I, still stunned, shared a crushingly significant embrace and vowed to one another to be strong for him.
John and I left the hospital after 9PM that night, disappointed there would be no assessment of the scan for us just then. We were relieved to learn from the technicians, though, that we could get this news the next day, Saturday, from the on-call doctor for his PCP.
That was a week ago Friday. Our original optimism about getting next-day results of the CAT scan faded pretty quickly. If my long day of phone work on Saturday, still unproductive by 5PM, was frustrating, we soon realized that “the endless waiting” for results, call-backs, appointments, etc., is one of the chronic challenges that comes with the territory. Friends have shared similar experiences.
So, determined, even while doubting the possibility for satisfaction on the Sabbath, we pushed through by calling Harvard Vanguard Sunday morning. A bit tired and a little cranky, I did not hesitate to express my dissatisfaction with the ridiculous number of undelivered call-backs promised us the day before. Given the vulnerable emotional/psychological state of this shocked, scared and befuddled family, evolving in good part from a sheer lack of critical & timely information, the compassionate after-hours answering service woman took our plea quite seriously. She took John’s birth date and promised to put in yet another note to the on-call doctor. (John, maintaining his sense of humor, expressed an ambivalence around his name, Dr. Angel.) But, thankfully, hearing my skepticism around the efficacy of yet another “note”, she did more. She called the on-call person directly and he, in turn, contacted John’s Dr. Gullapalli. We received his informative call within 20 mins.. Watch out what you hope for.
As John and I leaned into our landline phone, speaker-on and standing at attention on the hard granite counter of our kitchen island, forever the very center of our dear home life, we didn’t want to miss a word of Dr. Gullapalli‘s detailed report. The CT scan had shown that John has lesions not only on his liver, but on his skull, lungs, and in the lymph system of his abdomen. Hearing that, well, at first, they were just words. It is impossible to move instantly from a mostly healthy and positive life for which I’ve been endlessly thankful and appreciative and at which good fortune, even, from time to time, I’ve simply marveled, to such a drastic change in our reality. Neither of us would be able to take it in that moment.
Fumbling in my head and heart to make some sense of this, I asked in words I did not even recognize as my own, “What is the spectrum of hope here, doctor?” “It’s very wide as, until we find the source of the cancer and what kind it is, anything is possible.” We found relief in that, but then, we were looking really hard for relief in those moments. Any response that did not include “You have ….days to live” would have calmed our fears. He provided a lot of introductory information about cancer and how, in a general way, we could expect things to unfold. For every fact he shared, we had questions to which he gave clear answers. Dr. Gullapalli then told us that he would connect us, first thing Monday morning, with a doctor who would determine the best way to procure a biopsy.
Per Dr Gullapalli’s instruction, John called Mt Auburn first thing Monday morning to get the appointment for a biopsy. Another day passed before someone offered him “a week from Thursday.” We talked, considered the absurdity of waiting another ten days for a biopsy, and decided pretty quickly to insist on something sooner. Having been schooled, now, in his wife’s and his sister-in-law’s “are you serious?”, lightly demanding approach to those wielding the scheduling power in medical offices, John called “the scheduler” back and restated his case. “Look, I am a 71 year old man who found out three days ago that I have cancer, and yesterday I learned it’s all over the place. Before that, every test I have had has been followed by long days of “not knowing”, sometimes a full week of excruciating waiting. I’ve been increasingly fatigued and, now, unable to function for more than five minutes without needing to lie down on the couch. I have been feeling awful for months. Please don’t make me wait again.” Somewhere toward the end of that sharing, exhausted by his ordeal, John began to cry. And he heard, “Oh, okay. I’m sorry. Can you wait just a minute?” We learned later that she had left her desk, found the chief of oncology, described John’s plea, and, from this compassionate doctor, “I’ll see him tomorrow.”
By early Wednesday, not soon enough, we sat down with Harvard Vanguard’s Chief of Oncology (Kenmore Square), Dr. Bita Tabesh. Her confident, supportive, and informative demeanor was reassuring as she gladly encouraged our plan to record the consultation with my iphone. Giving us an hour of her attention, she examined John, acquainted herself with John’s medical history out loud, and explained cancer (if, indeed, one can) and the range of professional responses available from her organization and the network of premier facilities of which it is a part. I should not worry about “knowing enough to choose the best care for John”. This HMO and others in the medically-renown Boston area are well-informed about available options and will not care for a patient if his specific cancer is better served elsewhere. In other words, the best place will be chosen for you! We have to believe, but will remain vigilant.
Looking back, this woman’s positive attitude, one she has shared in each of her now regular end-of-every-few-days check-in calls, really does make a difference in how we feel moving forward. Often, her voice on speaker phone, strong and bright, like that of a very med-savvy angel from somewhere out there, is punctuated with her good, almost eager listening. We take turns asking questions and, checking our understandings out loud, appreciate her clarifications and updates on a diagnosis/treatment still evolving.
For those first several days, we had been drifting in the black space of an unknown reality, a fact-hungry place, arms and legs thrashing for something solid to hold onto. Alone in our own heads, our minds flew from the most bleak projections to the least devastating, unwittingly wearing us down. Partly because she has determined that the lesions in John’s body are of the scattered variety, a metastatic (spread to various parts of the body) cancer, Dr. Tabesh, a relatively young, but seasoned oncologist, suspects that this might be a lymphoma of some sort. Of course, just weird to find ourselves, our lives suddenly upended, suddenly viewing lymphoma as a kind of gift! Yay, it’s the curable cancer! The big “but” is, of course, only the biopsy will tell for sure. In addition to that, a full-body bone scan will be scheduled. “Our” oncologist also told us that the CAT scan shows that there are lesions in the bone of the pelvic area and environs.
Even as John and I have tried to say the word “cancer” in sentences containing references to ourselves, we find it jarring and it still doesn’t roll off the tongue without that old gravity, one so well-earned. John’s little brother, Dennis, nine years his junior, suffered and died from a brain tumor two years ago. It never became a familiar word or any easier to say as it became the cause of an unthinkable toll taken on all of us, in particular, his dear wife, daughters, and siblings. It has a nearly unspeakable quality that becomes all the more scary when, now, it is pointing its hairy finger at John! Just as the “s” word (yes, “suck”) will never loose the negative punch it has carried for me and those of us who grew up in and hold onto the fifties’ and sixties’ I Love Lucy and Father Knows Best sensibility about language’s charge to uplift, so, all the more, the catastrophic implication of the “c” word. However, given the remarkable advances in medical research for some forms of the disease, the association is rooted more in medical history than in the present state of available treatments. But, at the risk of waxing too positive, it remains, in many cases, a little word with tremendous clout.
Before school yesterday, having waited for this appointment only two days beyond our meeting with the oncologist, I drove John to Mt. Auburn Hospital for his biopsy. A “ good sample” was taken from a lesion on his liver. By the way, I can already see the up and down trend of this adventure. My impression around the size of all these lesions has been that they were on the small side. That may well have been my own wishful thinking influencing my reality. But John came to learn yesterday, from the biopsy expert, that the lesion from which this specimen was drawn is the size of a golf ball! “It could be worse!”, is becoming one of our go-to lines.
We are told to expect a diagnosis sometime during the first half of this coming week. Actually, truth be told, the reply to John and Julia’s inquiry regarding the wait, “If you don’t hear from us by Wednesday or Thursday, call on Friday.” I will be on the phone Monday, and, if need be, Tuesday again. As a matter of fact, give me the lab address. I may go and sit in the hallway. Let’s get this show on the road!
Pray, friends, that all will be well. And know that your love is felt here in all the caring and concern, the lovely support in each of your kindnesses. Many of you, having fallen in like good villagers in a common catastrophe, have already held us up. We four are not surprised by the calls, emails, and texts filled with your generosity of spirit and offers of help, but, still, we are awed.
(Perhaps, if need be or eventually, in answer to offers of practical help, as weird as the idea of folks signing on in such an organized way may feel right now, I will add a calendar website to organize those efforts.)
~ Sheila Gilligan
april 9, 2016