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