The "Not Bad" News: Returning to "What Worked" in the Hope it Works Again

“The scans show some new dark spot on your liver … and your marker is up to 1900.” Dr. Robin delivers the news in a clear and compassionate voice. The good news is there is no growth in the pancreas tumor, my lungs are clear and my heart is good. There are some questionable areas near my spine, but nothing active. And my newly found back pain may just be a muscle pull.

It’s the back pain that had San and me worried. For the past two nights I couldn’t sleep and despite taking one of those magical oxy painkillers, I still couldn’t lie on my back. So, at two a.m. I moved to the recliner. At four, to the couch. Which means that San also moved, didn’t sleep, and whereas I worried about what might be causing the pain and what might be done to alleviate it, San worried about all of it. She had done some reading. It could be that the mass on my pancreas was growing again, pressing against a group of nerves, radiating throughout my left side.

But it was not that, apparently.

Dr. Robin said she woke up at 3 a.m. and knew I was in pain. She had been considering possible new plans before she fell asleep. “So I think what we need to do is go back to what works for you,” she said after sharing the results. “We’re ready to start today,” she offered.

I nodded. I had kind of been expecting it. San and I had talked about it. San asked some questions about the possibility that a return to such an aggressive protocol might damage my heart, etc.

“No,” replied Dr. Robin. “These are not the chemo drugs or dosages that pose those risks.” She explained that for persons suffering from some kinds of leukemia or other cancers that may be the case because of the size of the dosage required to fight the bad cells.

“Okay, then, let’s get started.” The plan is to “zap” the rogue cells and the new lesions in the liver with four rounds of the same stuff we used last year to get the marker down and kill off the growth of the tumor and previous liver lesions. Unlike the “lightweight maintenance chemo” that I really don’t like due to the longer recovery cycle, the old protocol only requires 6-7 hours once every two weeks. Recovery time should be relatively short, although it does come with the old sensitivities to cold, chemo brain, the need for three days of fluids, and wearing the dreaded fanny pack “pump” for 46 hours following the initial treatments. Robin believes this total zapping is our best hope to be not only reduce the blood marker and turn the lesions into scar tissue, but also for being able to go the UK with only a chemo pill for maintenance.

We shared hugs. It was time to begin again.

*** 

The Room of Orange Chairs – actually two rooms separated by the chemo prep and lab area – was packed with patients, but my old trusty seat was waiting for me, and one smaller non-reclining seat for San. The oncology nurses and Jan are busy, busy. But never to busy to share a smile and welcome us back.

Today is “Happy Dance” day for Felicia and Don, a couple about our age whom we have known since their first day, and for Patricia/Patty, who we have met once before. Felicia is doing much better now and looks good; she and Don are more than ready to resume normal lives. Patty also looks good and, having just turned 20 and beaten a large cell cancer that grew a tumor throughout her chest that tried seriously to kill her, has maturity and strength far greater than her age. Today she is done with chemo and next week she begins a follow-up radiation protocol. She is cheerful and full of the hope and laughter and making plans (“I just want to use what I’ve been through to help others”) to become an ultrasound tech. Her spirit exudes positive energy. She says she might YouTube her Happy Dance.

There are others in the room who are new to us, but not new to treatment. One fellow with some bold rock n roll tats is nodding his head in time to what I learn is Radiohead. There is a sad fellow next to me who is older, has hearing problems, and is worried because even though the nurses have explained to him how the day will unfold, arranged for his doctor visit, and otherwise catered to his every whim, he can’t remember any of it. Fortunately, his wife is there to help soothe his anxieties, but she, too, either can’t recall or needs clarification on most things. My heart goes out to them and to the busy nurses. It’s that kind of morning. How they manage it, and manage to keep their own good spirits and high level of professionalism, is amazing.

*** 

I flash back to our meeting with Robin, to a funny interlude in an otherwise serious conversation. As some readers of this blog know, until I got this cancer diagnosis I had led a relatively healthy and pain-free life. So my experience with ordinary, over-the-counter drugs has been minimal. One of the by-products of dealing with the aches and pains associated with this disease has been a new and rather intimate relationship with Advil.

I am, however, reluctant to take the full allowable measure of it. I explain this reticence to Dr. Robin and she agrees that taking pills is something she resists as well, but that I could up my intake of Advil to three at a time (600 mg, with a max of 2400 mg per day), particularly if it rids me of back pain.

“It’s kind of like being in a twisted Monty Python film,” I say.  “What did he die of?” (I use by best British accent). “Oh, he had terminal cancer but it was the Advil that killed him.”

“That takes me back to college,” Robin says, smiling.

We’ve gotten to know Robin during the past three months. We have learned that in addition to her rightful billing as an award-winning compassionate physician with a strong and loyal patient following, she is at heart a Southern girl, a product of William & Mary as well as Vanderbilt University, and herself a cancer survivor. She has been where her patients “are” when they get the diagnosis. She understands the various challenges that come with it, the side effects of treatments, and the uncertainties of all of it. She is a petite woman, a lovely person with a large heart and this work is her life.

*** 

We completed the first treatment and I put on the fanny pack. Or tried to. Monica realized that the pack delivered to me had a belt intended for a much smaller person, so I ended up wearing the pack over my shoulder. Later, at home, Nic would find a substitute belt from his gym bag.

It had been a full day. The fine oncology team was once again a true to their rare ability to make that six or seven hours in an orange chair a pleasant experience, fun with friends, with only the chirp of the chemo delivery systems, the occasional totally bald woman or man, and the common topic of cancer in our talk a reminder that we are here for a reason. The team offers hope against all odds. They work for miracles that occasionally happen. They are saddened when things don’t work out. They deal with patients who present them with a wide range of human vulnerabilities and weaknesses, pains that can be managed and fears that cannot always be denied and so must be handled honestly with the care and compassion of true professionals.

On the drive home, San and I are relieved that the news we got was not so bad and that we continue to be in the hands of a team, and surrounded by the love and support of a community and family that help make our journey through Cancerland a rewarding lesson in the best of what humans can be.

Probably you know, as we know, that this is a terminal disease. That fact won’t change. At some point in the future – we hope not too soon – the scans will come back with truly bad news and when that happens, we will deal with it. I am blessed to have San and Nic always by my side. We are blessed by the love of our family and extended families, our close friends, colleagues, caregivers, and all of you who join us on these pages, on Facebook, and elsewhere. We know you will continue to be there for us.

But we are not there yet. We are still here, beneath what the poet T. S. Eliot once described as “under the twinkle of a fading star.”

So tonight, and every day and night, let’s celebrate that twinkle, let's celebrate life. For it is in our celebrations that life itself is justly rewarded, our connection to each other honored, and our miraculous lives become truly blessed.

***