Sunday, July 29, 2001
Enduring the ordeal of treatment
By Marjory Sherman
Eagle-Tribune Writer
There is a rhythm to Ric Blake's week, now that he is undergoing radiation
five mornings in Methuen and chemotherapy on Tuesday afternoons in Lowell.
Between the huge linear accelerator that delivers weekday doses of radiation
and the drip, drip, drip of the toxic chemotherapy drug, the Londonderry,
N.H., man sometimes feels like his life is a cross between "Star Wars" and
"Arsenic and Old Lace.''
He is at his best early in the day on Tuesdays, when he is free of the
poisons of Taxol that course through his bloodstream after his weekly dose
of chemotherapy, and just one day into his five-day run of external beam
radiation that zaps the area from his chin to his chest, called the
mediastinum.
By week's end he is depleted from the cumulative effects of a week's worth
of chemotherapy and radiation. Last week, he could not talk, drink or eat,
and had difficulty breathing through the weekend. Come Tuesday, he had
bounced back.
"Today is a good day,'' he announced as he arrived at the Cancer Management
Center at Holy Family Hospital at 11 a.m. Tuesday.
He looked surprisingly well, wearing loose plaid seersucker pants, a black
shirt, and toting his green backpack filled with his cell phone, water and
literature about gardening.
His head is shaved, beard gone, and he is a few pounds lighter. He has three
dots tattooed on his neck, marking where the radiation beams should line up.
Maintaining his weight, on the far side of 230, is a significant effort for
him, especially because side effects of his treatments such as nausea and
painful swallowing could easily lead to limited food intake.
Blake has had ups and downs since beginning treatment for late-stage thyroid
cancer four weeks ago, but by Tuesday, life was good again.
He was feeling well enough to invite a reporter and photographer on his
longest, most grueling day of treatment, laughing and talking and ruminating
all the way. Blake has never veered from his goal of documenting his illness
and treatment as a way of opening the discussion for the need for palliative
care in the Merrimack Valley. Tuesday marked another step along the way.
Over seven hours, he would don a mask of firm plastic netting previously
molded to his face to hold his head still as he undergoes radiation at Holy
Family; meet with radiation oncologist Dr. Santos Shetty; snack on a frappe
and watermelon in the hospital coffee shop; drive with his wife, Diane, to
Lowell General Hospital's Cancer Center; and settle into a chair for three
hours in the infusion room, where after blood test results came back and his
meal arrived, he would be pumped full of the chemotherapy drug Taxol.
Finally, he would end his marathon day by attending a late afternoon
advanced cancer support group meeting at Lowell General, a group where the
fourth of six original members recently died.
He is now in his fourth week of a six- to seven-week course of treatment
that doctors hope will shrink the thyroid cancer tumors growing in his neck,
one of which has already breached his larynx and attached to the wall of the
trachea.
Blake wants to be proactive, to know what might happen, and have the
medicines and tricks already available, at home.
"I don't want to learn it the hard way,'' he said.
He had already learned once, the hard way, when doctors cavalierly mentioned
he might experience some discomfort when they implanted a feeding tube in
his belly last month at the National Institutes of Health.
"I had more pain in the next 72 hours than I've had any other time this
year,'' he said. "They should have explained to me what the range of
possibility was, and they should have assessed my pain every so often for
the next 24 hours.''
The experience made him lose his faith. He realized that unless he is
proactive, the same thing could happen again.
By the second week of radiation treatment at Holy Family, he felt out of
control. His plan for proactivity was not working smoothly, so he called a
meeting with the head nurse at Holy Family Cancer Management Center, Karl
Magnussen, and his head therapist.
"I told them, 'This isn't working for me. I am not reassured,' '' he
recalled. "I felt like I was definitely stuck in a system in which I had no
control at all.''
He asked for a list of every symptom, every side effect he might experience,
and a list of treatments for each one. The nurse and technician initially
balked, saying that the usual protocol is to wait for the patient to voice a
particular complaint or concern, and then find a solution.
Not good enough, Blake said.
A few days later, Shetty handed Blake a fistful of prescriptions, everything
for pain control from prednisone for swelling to a cocktail of novocaine,
Malox, Benadryl, and an antibiotic to soothe his throat.
"He is proactive. He keeps us on our toes,'' said Shetty. "In the long run,
cancer patients are going to benefit because of him. We benefit, too.''
Many patients on the first visit to a cancer-care center are frightened,
said Shetty. But a patient like Blake, he said, who is well informed and
wants to discuss treatments and side effects, makes a good partner.
Most doctors and nurses who encounter Blake soon learn that he is an
exceptional patient, someone who wants to know everything about his illness
and the treatment, someone who wants to prepare for all possibilities.
Blake's concern extends to all of the other cancer patients, especially the
ones who are not as outspoken as he and often do not get the information
they deserve, in advance, from the medical community.
"They're still missing the point that they should do this with every single
patient, before the treatment starts,'' he said.
'The only shot I've got'
Even Blake has encountered bumps along the way during the first month of
treatment. He arrived home to New England in June from the National
Institutes of Health in Bethesda, Md., with a feeding tube called a PEG
(percutaneous endoscopic gastronomy) implanted directly into his stomach, to
bypass the throat in case of swallowing difficulty. Problem was, he had no
clear idea how to use it and no one taught him until he asked.
Then there was the breathing scare.
Last Sunday, he woke at 3 a.m. with a stabbing pain in his throat. He did
not realize that he was unable to speak in anything more than a whisper
until he attempted to talk to his cat. A few days before that, his breathing
had become labored and wheezy, his lungs feeling as if their capacity was
compromised.
"Nobody had talked to me about the possibility that I might suddenly not be
able to breathe,'' he said.
He considered whether to go to the emergency room or call the emergency
department at Holy Family Hospital, recalling the words of his physician,
Dr. Nicholas Sarlis, that it would be wise to have someone nearby at all
times. Was this that emergency?
Later, Shetty ordered oxygen for use at home. Just having the canister by
his side was reassuring, both for Blake and his wife.
By last weekend, the radiation had made his throat and esophagus so swollen
that trying to swallow felt as though there was ground glass jammed into his
neck.
The pain was so intense that he decided to use the feeding tube for the
first time to bypass the swollen, painful radiated area. He opened his first
can of nutritional supplement, filled a syringe and waited for it to begin
dripping into the tube. The moment was probably one of his worst.
Blake is repulsed by the tube, hates having a foreign object hanging from
his belly. But there it was. This tube was his only way of taking in
nutrients, precious calories that would give him the strength to continue
the therapy to fight the thyroid cancer growing in his throat.
"I made a commitment that when it came time to use it, I would,'' he said.
The problem was, nothing dripped in. A few frustrating attempts later, Blake
decided to manually inject the fluid, slowly, into the tube. Over 30
minutes, he slowly depressed the syringe, filling his belly with liquid
food, followed by a chaser of water to flush the tube.The effect was
nauseating, leaving him feeling so full that he might burst. Still, he did
what he set out to do. He added 475 calories to his diet, on a week when he
was definitely dropping a few pounds.
"It feels like you've eaten two Thanksgiving dinners,'' he described.
Despite all of the insults to his sensibilities, Blake is determined to be a
full partner in his care. If something is expected of him, no matter how
unsettling, he will do it if he feels it might help.
During his first few sessions of chemotherapy, he learned the hard way that
Taxol is a powerful toxin. The drug derived from the Pacific yew tree is
known to cause terrific allergic reactions, especially for people with
allergy to pine trees. Prior to each treatment, patients get a dose of
antihistamine, anti-nausea drugs, and steroids to stave off bad reactions.
All of Blake's medicines are delivered through a catheter implanted under
his skin.
Every week, despite the best planning, Blake has had reactions about 15
minutes into the treatment. One week, his body temperature dropped and he
suffered significant shivers. Nurses were so concerned about the reaction
they asked if he wanted to stop chemotherapy. He refused.
"Why would I want to stop Taxol? It's the only shot I've got,'' he said.
On this day, Blake was casually reading his Better Homes and Gardens
encyclopedic book on gardening and chatting with his company when, about 15
minutes into the Taxol drip, he became flushed.
He asked the nurse for a cold cloth, mopped his forehead and slumped back in
his chair.
"I am burning up. My eyes feel like they are burning out of my face,'' he
said. "They're cranking in all the poisons, no wonder.''
"You're not usually this warm are you?'' asked nurse Gloria Langlois, taking
his temperature.
"I'm usually cold,'' he said, starting to fidget in his seat, wishing he had
remembered to bring a pain pill.
In 10 minutes or so, the heat wave had passed and he was back to reflecting
on gardening, and on life. He offered a cure-all for garden pests, a
concentrated concoction of Listerine, unsmoked cigars, garlic, Tabasco
sauce, onion, and urine.
Some weeks, after he's had the chemotherapy, he fells like his brain power
is diminished.
"I feel like I lost 50 IQ points and gained 50 years,'' he said.
The one thing that captures his imagination still is his garden, a place
where he spends two or three hours each morning.
"I tell you, it's the garden that gets me out of bed in the morning. It's
all the stuff that happens outside the treatment, complementary to the
treatment, that every morning, makes me get up and go,'' he said.
With that, he conferred with the medical staff and worked out a plan to take
his intravenous pole a few doors down to his support group meeting. And off
he went, continuing his plan to put all he can into his care and treatment.