Sunday, August 19, 2001

Now it's time to wait, wonder

By Marjory Sherman Eagle-Tribune Writer

On the last day of Ric Blake's chemotherapy and radiation, there were hugs, a good luck bamboo plant and a sense that a huge question hung in the air.

Did the combination treatment work? Would it stem or shrink the thyroid cancer growing in his neck?

As Blake, 56, strode into the Cancer Management Center at Holy Family Hospital in Methuen Tuesday morning, head shaved and smiling broadly, there was little sense of the limbo in which he and his wife are living. Nor was there any trace of the trauma four days before when he was rushed to the emergency room because he couldn't breathe.

Those worries roiled beneath the surface, but in the moment of his final trip under the crossbeams of the linear accelerator, he was upbeat. He bounded out afterward, waved goodbye to the radiation technicians and off he went.

"What's it feel like? Like every birthday you've ever had, plus a couple of Hanukkahs and Christmases thrown in,'' he said in his husky whisper, walking upstairs to the coffee shop with his wife, Diane, and the reporter and photographer who are documenting his journey. He playfully stuck on his head his parting gift -- the rigid, white plastic mesh mask that has held his head in place for six weeks of treatments.

Seated at a table in the coffee shop, he reached inside his green backpack and pulled out a white plastic bottle containing a painkiller, Roxicet, a form of the medicine oxycodone plus acetaminophen that has become his lifeline. He pumps the liquid through the feeding tube in his stomach every three or four hours to take the edge off the pain burning in his throat and neck. It works in tandem with the time-release painkiller pills he takes twice a day.

"This is what allows me to live,'' he said, "I couldn't get through the day without this. If I didn't have it, I'd be climbing the walls.''

Pain, and how to manage it, has become a central focus of Blake's life over the past six weeks of cancer treatment. Radiation burned his flesh bright red and left the inside of his throat feeling as though every single cell is on fire. Pain from his radiation-swollen throat, along with the side effects of the chemotherapy drug Taxol have sapped his energy and ruined his sleep. Between the agony and the sensation of his breathing being choked off, he sleeps in three hour stretches at best.

Even though Blake insisted he get the tools to deal with the side effects of his disease and treatment -- he was handed a fistful of prescriptions early on -- he never truly understood what drugs to use and when.

As a result, his pain was out of control on various days, leaving him feeling helpless, unable to read or concentrate.

"If we'd had a written plan, we wouldn't have gotten in that situation,'' said his wife.

It wasn't until the Blakes took matters into their own hands and invited Sheila Scott of Merrimack Valley Hospice to their Londonderry, N.H., home last week that they learned how to stay on top of the pain. Scott, as director of Hospice, is Diane Blake's boss, and someone the couple felt they could turn to for advice.

She explained that Blake should be taking both pain medications his doctor had prescribed, the long-acting pills and the fast-acting liquid. She also suggested a third medicine, Levsin, to dry up the secretions in his throat that make him feel as though he is choking and prevent him from sleeping.

Few advanced cancer patients would have the resources or the wherewithal to find someone to explain the best way to manage pain, and even Blake with all of his knowledge about his illness, needed a refresher lesson.

"People need to hear things three, four, five times, and in different ways with different words,'' said Scott. And then, they need to be monitored closely, and the medications adjusted as symptoms change, called titrating.

The necessity of closely monitoring patients with late-stage illness through every step of treatment is exactly why there is a growing call for palliative care -- services that will bridge the gap between diagnosis and hospice, she said.

Blake says people like him need "patient educators'' to teach about pain medications and follow the patient's progress.

"There's a piece missing, the education component. But that doesn't happen unless you ask for it,'' he said.

Pain and how to control it was just one hurdle Blake faced during cancer treatment.

His vocal cords, more finicky than ever from the radiation-induced swelling, produce a smaller, more hoarse voice these days, making telephone conversations difficult.

Chemotherapy has taken its toll. His hearing is diminished; there is an occasional shakiness, or palsy, in his hands; and his beard fell out by patches, leaving his chin as smooth as a baby's. Worse yet, he suffered an allergic reaction to the Taxol nearly every week, that within 24 hours would compromise his breathing.

Last week, a near-crisis erupted in the Cancer Center at Lowell General Hospital in Lowell when his oncologist Dr. Michael Constantine worried aloud that Blake's allergic reactions to Taxol could be trouble. The doctor nearly stopped the chemotherapy after a pre-infusion blood test showed Blake's white blood cell count was precipitously low. That, paired with the allergic reactions and breathing problems, made Constantine rethink the choice of administering Taxol.

There is always a danger with chemotherapy that the drugs themselves can kill you. Constantine was weighing whether they had reached this dangerous point with Taxol, but Blake was insistent that Taxol is his only hope.

"If we don't do this, I'm going to die. And I'm going to die sooner rather than later,'' he said. "You just don't want me to die on your watch.''

Constantine walked away for a while. He returned soon for another volley with Blake, only to relent, finally. He would allow the Taxol provided Blake had a chest X-Ray to prove there was no pneumonia lurking in his lungs and that Blake meet with him again on Friday.

Blake has always been determined to complete his chemotherapy and radiation treatments, as prescribed by his doctor at the National Institutes of Health in Bethedsa, Md. He views it as a way of buying time, if not a cure.

"At least if we did all six (Taxol infusions); we gave it our best shot,'' he said. "We're doing all of this to buy time. Unless something comes along, I'm going to die of this. It's a terrible way to die.''

Another crisis erupted just two days after the Taxol quandary, this one at Holy Family Hospital after his daily radiation. Blake announced, after the treatment, that he had been having trouble breathing all morning, even before the treatment.

"I just couldn't breathe,'' he said. He was having a post-Taxol reaction, and his bronchial tubes were closing up.

Radiation oncologist Dr. Astrid Peterson worked Blake up and ushered him into the emergency room, where he was given large doses of oxygen, albuterol ( a bronchodilator) and an antihistamine called Decatron. He was also put on a higher dose of prednisone (an anti-inflammatory steroid) to soothe the swelling in the bronchial tubes. He was safely home a few hours later.

In comparison to the traumas of weeks past, the final session of chemotherapy at Lowell General Cancer Center Tuesday was easy. As he sat in a big leather chair getting his pre-chemo testing, friend and social worker Meg Lemire-Berthel appeared carrying a green ceramic vase with a Japanese bamboo plant inside. It signifies luck and good fortune, she explained, planting a kiss on his face.

The day after treatment would bring mixed feelings.

On one hand, there was no rush to get to his 11 a.m. radiation treatment at Holy Family. On the other hand, the cumulative effects of all of the toxins could be a dangerous thing. Blake arranged for friends and relatives to be with him 24 hours a day for the five days immediately following the end of treatment.

In the days and weeks since he started in earnest what he hopes will be life-prolonging treatment, Blake has had some intensely personal conversations with friends. It's as if they are saying things to him directly that they might have said over his grave, he said.

"People are coming to realize that I could actually die of this,'' he said. "I've had some extremely profound and sad and beautiful conversations.''

People tell him he has changed their lives; they don't know what they will do without him.

"In the midst of all this treatment, I think the real finality has set in. I've been trying to get people ready for a long time,'' he said. "There are people who are just in denial most of the time. They don't want to hear it. Well, they can't deny it anymore.''

Still, Blake would choose his lot over his wife's. The caregiver, he believes, is the tougher role.

Diane Blake is living her own life in limbo.

"The other night I said to him, 'I feel like we're in this tunnel and I don't know what path we're going down.' I feel like I don't have a steady grip. Living in limbo is so hard,'' she said.

A gift from her sister of a special meditation group in Western Massachusetts a few weeks back helped shore up her emotional resources.

The small moments of life have come to stand on their own, in technicolor.

"The intensity brings out the very best in people. You break through a lot of barriers and people are more willing to be vulnerable, because you are,'' she said. "You see things with different eyes when you're going through things like this.''

"You just have to have faith in the process and just let go and go with it,'' she said. " It's really living in the moment. It really means appreciating right now, just this moment, because that's all you have. And that's all any of us have. One of the biggest things is you don't know how many tomorrows there are going to be."

Ric Blake will have a better idea about his tomorrows in four or five weeks, when he returns to the National Institutes of Health for follow-up tests.

Until the end of September, he will be living and gardening and considering life's possibilities.