On Being Patient: Biopsy, Diagnosis, and Beginning Treatment

With blood tests, a sonogram of his liver, more blood tests, and a CT scan eventually dribbling electronically into the right hands, we had finally seen action taken on John’s serious predicament. He had had a biopsy from a lesion on his liver on Friday, 4.8.16.

Dropping him off at Mt. Auburn Hospital that day, I continued on to work, reluctantly. Through these early days, I am trying to finesse my work schedule around John’s appointments. As planned, Julia joined him for his biopsy. Thoughtful, caring communiqués from family and friends have supported our agonizing ten-day wait for a diagnosis. It had seemed a long haul between Dr Tabesh’s first suggestion that John’s disease (pre-biopsy and unconfirmed) might very well be curable lymphoma – and his actual diagnosis.

By early Monday, 4.11, ignoring the nurse’s instructions to “wait before calling in a week if you haven’t heard by then”, I put a call into Dr. Tabesh’s office. Reaching the end of classes for the day, I picked up my phone to hear the first of three biopsy takeaways, “It IS lymphoma. This is very good news!” Since it was still early on in pathology work that promised to take a week, she was able to report on just that one-third of the total info.. For now, this, a real gift in these circles and suddenly quite coveted, was plenty!

Thanking her like she’d just facilitated a rebirth, I immediately called home. “Julia, put the phone on speaker.” I said, “John, are you ready for some good news?” “What?” he asked his voice excited. “You have lymphoma!!!” There was silence as each of them made their own abrupt shift away from our living hell and back to the stuff of hope! And then, we all let out our yelps of relief and joy together, “Can you believe this?”

The tension of not knowing with what we were dealing had shaken us and our basic sense of well-being, the one that depends on health and an assumption that tomorrow will come bearing some resemblance to life as we’ve known it. It had been a living nightmare. Surely, now, we had reached the end of a most excruciatingly surreal, plunge away from all we had taken for granted for so long.

Then, I called Olivia immediately. Far away, she’d been suffering alone with her dad’s predicament without the benefit of being with us, experiencing the day-to-day of it together. Her friends helped to hold her up, but she wanted to be home. I have never enjoyed others’ relief quite so viscerally. The news heartened her and she asked about “dad’s next test” to follow that week, a bone marrow test.

Dr. Tabesh, again, like an angel with functioning wings AND a solid education, seems simply to appear wherever John is told to show up. There she is again, this time, suited up for action.  Smiling cheerfully, she was holding what John later described as a highly sophisticated piece of technology that looked, in part, an awful lot like a chisel! Laying there on the “procedure table”, his fetal position the perfect expression of vulnerability, John, God bless him, in possession of neither the strongest stomach nor deepest tolerance for pain, got through a long half-hour exploration of his hip for bone marrow.

Having been given no more than a local anesthesia, he was forced to anticipate the portion of this journey that would bring Dr. Tabesh’s instrument from the surface of the bone down to the marrow. Yikes! The damn drilling would make him wince and tighten his muscles. The following week, from the tiny podium of our home speaker phone, she would congratulate him on his steadfast courage and repeat the awesome discovery that John’s bones are incredibly dense.  “He has very good bones”, thank you very much, and thus, they made for a difficult passage!

John had begun to appreciate the rhythm of his doctor’s pushing and pulling, the alternating of some terrific exertion and rest, and his understanding that, if she could not penetrate to the marrow on her own steam, she would necessarily call in another physician to help. Later, when he was relieved to have survived this mining of his marrow and to have put the procedure behind him, the technician offered him juice. “Yes, I love cranberry. Thank you.” Her kindness and delivery of juice and Lorna Doone cookies, under the circumstances, renewed him tremendously. It was easily the best comfort he’d had since Dr. Tabesh reassured him with, “It’s going in, we’re making progress. A little bit more. How you doing?” She had been encouraging, providing comfort, and cheering him and herself on. He had never doubted her capable hands and, as it turned out, her strong arms. As she walked away with her hard-earned sample, he sipped sweet juice.

The initial, more frequent than expected end-of-day phone calls from Dr. Tabesh had removed much of the early, awful feeling of being in the dark. Right before the bone marrow procedure, soon after sharing the biopsy’s confirming lymphoma revelation, she reported that John’s disease was the more aggressive variety which would, in turn, be very receptive to chemo! By golly, if there is anything approaching justice in this indifferent bioworld of battling cells, this must be an example of it!

The third and longest awaited piece of info was the chromosomal one. It had indicated that John’s liver’s enzyme level, after that first short “CHOP” treatment on 4/15, was nearly back to normal! It also revealed that his bone marrow was likely free of cancer. My understanding was, though, that only the subsequent bone marrow biopsy itself could actually confirm that. Later on, we would need clarification on this issue.

Returning yesterday, Thursday, 4.21, to the fourth floor Oncology Department of Harvard Vanguard (Kenmore Sq), where a tightly scheduled regimen of chemo treatments becomes routine for cancer patients, John was very tired. The recommended daily hydration that facilitates a healthy flushing of chemicals and targeted dead cells from his system continues to make for a rest-depleting run of wakeful nights. So, eyeing a freshly made hospital bed, he was pleased to be given one of only a few private rooms for this, the final five-hour portion of his first treatment.

Rituxan (rituximab) is a cancer medication that interferes with the growth and spread of cancer cells in the body.  It is used to treat, among other things, large-cell non-Hodgkin’s lymphoma. This powerful “R”, as it is called, would be introduced gradually, particularly because it was being destructively delivered to the very innocent and startled immune system of a body that had had the bad luck of unwittingly harboring cancer cells. (Why does Vietnam fly into my mind?) The attack made on the intruders could not help but wreak havoc on their host, an otherwise healthy body.

We settled in, a lunch from home in our old cooler, the one we’ve schlepped for years on other, much more sunny adventures, and my laptop on the long hospital bed-table. John laid there, his tired eyes closed, relaxing in and out of a nap. He seemed less bothered by the possibility of a bad reaction than I was. Within the first two or so hours, we would know if his body was going to react badly, become cold or feverish, and shake. Fortunately, during the first hours of the treatment, the only apparent physical disagreement was felt in John’s toes as they grew chilled. Andrea, our kind nurse, gave kept us in those thin white blankets, fresh from what seemed an endless supply in the nurses’ warmer, in which I wrapped and rubbed his big feet. As a tiny victory against my helplessness, they warmed up.

“It could be worse,” we say around the house. But for the time and region in which we live and the advances in medical science from which we are now benefitting, we might not have had the luxury of all the ups and downs of the last several weeks. Ah, yet another fine support, the recognition of relative good fortune hidden in one hell of an awful time.

april 22, 2016

~ Sheila

Exhaling

It’s been 17 days since we began to think the worst. 17 days since our worries were rooted in the minor daily annoyances: no milk left, wet laundry to hang, dog poop in the kitchen, windshield wipers broken.
As we began to grasp our new reality, we silently longed for those days, when our troubles were so much less troubling. That blissful ignorance we were bathing in was draining before our eyes as my dad became sicker with each passing day, and the news that we were dealing with our worst nightmare replaced all that cozy ignorance with a cold, harsh cancer diagnosis.
I drove through the spring rain to pick my dad up from his liver biopsy last week. I walked through the hospital’s maze of hallways, following signs to Radiology, thinking about how many people come here all the time. All of the lives and time spent here – visiting, or coming for treatment, or entering the huge revolving door feeling awful and leaving healed, or coming only to never leave. I wanted to burn all of the dark thoughts that ran into my mind.

image

I hadn’t seen him wearing a gown and laying in a hospital bed on his back until then. He was awake and hungry, he had ordered some scrambled eggs, ham and toast. The nurse brought his food in, dreary hospital style, and recounted a mid-biopsy tale. Apparently when dad was sedated he unconsciously thought it would be a good idea to pull the biopsy needle out when the doctor stepped out to hand the sample off. The nurse didn’t catch his hand sneak under the sheet, and subsequently taped his arms down.
——————–
The sample that they took from one of the golf ball sized tumors on his liver resulted in the diagnosis we had all hoped for: lymphoma. The nurse who gave my mom this news said, “he’s going to live a long time.”
It’s non-Hodgkin’s lymphoma, the faster growing and spreading lymphoma. The bad news is that it’s aggressive, the good news is it’ll be more responsive to the treatment. He will receive chemotherapy treatments once every three weeks for a total of six sessions.
His first chemo was on Friday and it went well. He is drinking water constantly as we was told to do, in order to flush the chemo and the dead cells out. He is still hurting, of course, and can’t move about for more than a couple minutes before having to rest, but there is nothing that could have made us all more relieved than to receive this news. We have something that we weren’t sure we would have, we have hope.
My mom put it perfectly when she said, “we can start planning again.”
april 18, 2016
-Julia

John’s Health, First Days of the Scary Time

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

dad

 

Last Friday was April Fools day. My family loves practical jokes, surprises, shenanigans, you know, all the fun stuff that doesn’t feel fun in the moment when you’re on the wrong end of it – but we’ve been off our game in the past couple years.

My dad has always been the King of Gags. He knows how to toe the line of what might be considered too much (I may have come close to having a few heart attacks as a child when a booming voice would echo suddenly from the depths of a dark closet) but it always ended in a laugh.

So when he came into my room on Friday and sat on my bed and told me he had cancer, I had never hoped so wholly that he was playing a prank.

“You’re joking, right?”

When he shook his head and looked at me with tears in his eyes I still had a tiny voice that was impressed with his acting ability.

But this time he wasn’t joking. He had just come back from the doctor, they’d called him in to give him the results of his blood work and sonogram: tests that were done because he’d been feeling awful for the past 3 months. We had been seeing all of his symptoms as independent of one another: which is exactly what doctors don’t do. He’d been losing weight, 15 lbs since January (“you’re losing that belly, John! You look great! Let’s keep it off!). He’s had a persistent cough (“are you taking your allergy meds?”). He’s been feeling fatigued after even the smallest amount of exertion (“that sleep apnea keeps you from getting a good night sleep”). He’s been queasy (“could it be a stomach bug?”).

He sat on my bed with his head drooped and told me that the sonogram showed masses on his liver. The doctor ordered a CAT scan for this afternoon.

I hugged him, my head buzzing in utter shock. “Ok, we’re leaving now?” I asked, feeling like our roles were suddenly and completely reversed. My hands shook as I groped around in my bag for the keys.

“No, no, it’s ok, the dogs need to get out for a walk and they need to eat, I’ll just go, and…” he began, trying to make everything stay okay. There was a part of me that wanted to accept what he was saying, it sounded nice, it sounded like what was happening right now wasn’t the horrible thing that it felt like it was. There was so much of me that wanted to just see the fantasy that he was sketching with a dull pencil over this marble statue that had just landed in front of us.

“Dad, I’m driving you, let’s go.”

We drove mostly in silence. I asked him a few questions. We were both just taking it in. He told me that the nurse practitioner was the one who had to tell him. He said she clearly felt awkward and uncomfortable. Of course, he was thinking about how she felt.

As I drove I bit down again and again on the insides of my cheeks to help suck the tears back into my eyes. If he wasn’t blubbering I wasn’t going to, at least right now.

He directed me to the parking lot and when we got out of the car it felt like any other time, as if we were headed to go see a superhero movie, or get a cheeseburger, or browse a yard sale on a summer day. But instead we were in one of the “parking for emergency room only” spots, because my dad has cancer.

“Wait, we didn’t get a ticket, how do we pay?” I asked him, the part of my brain that does adult things was somehow still functioning.

“That’s why I told you to park here,” he said with his santa-laugh, “no paying.”

—————————————–

We found out after the CAT scan that my dad has masses on his liver, lungs, lymph nodes in his abdomen, and in his skull (bone, not brain). He is going to get more tests done to determine what type of cancer it is.

My mom and I will be updating this blog at some sort of pace. We want to have a place to keep people in the loop and do some therapeutic writing. Thank you, friends and family, for all your support.

-Julia 

april 4, 2016