Sunday, June 17, 2001

Despair leads to renewed hope

By Marjory Sherman Eagle-Tribune Writer

The news was bad, far worse than anything Ric Blake had imagined when he headed 500 miles away from home for surgery to remove the cancer growing in his neck.

Here he was sitting on a couch with his wife, Diane, listening to his "wizards'' at the National Institutes of Health -- a thyroid specialist and a throat and neck surgeon -- tell him the tumors in his neck were in places too precarious to operate. Even the most practiced surgeon's knife would almost certainly take his voice and could damage his trachea.

The options were external beam radiation and chemotherapy. Surgery on his neck was no longer on the table.

Mr. Blake put his hand to his forehead, desperately trying to listen to the doctors, knowing he was a hairbreadth away from a moment of panic. The enormity of his situation numbed his brain.

"My worst nightmare was nothing compared to the reality of what this turned out to be,'' he said after the diagnostic tests came back and he spoke with the surgeon.

"I never could have imagined this path. I didn't think it could get this bad,'' he said. "Now they're taking away my surgical magic bullet and I'm left with treatment options without guarantee. There's nobody that's going to stand up and say, 'We think we can stop your cancer's growth.' Now all we're doing is buying time, fighting the fight, and seeing what works. It's a path I had hoped I wouldn't be on for five years.''

Yet now, here he sat, intently listening to Dr. Richard Alexander, a tall, thin surgeon renowned in his field, explain why surgery was out of the question. The cancer had grown perilously in and around his larynx and trachea.

"I gotta tell you, and I'm pretty slick at this kind of surgery, the nerve is at very high risk,'' said Dr. Alexander.

The final diagnostic vocal cord test showed the right cord is already damaged, but Mr. Blake's left cord, though still quite healthy, has a tumor growing around it. That cancerous tumor, some two by seven centimeters, was also attached to the wall of the trachea and growing upward. Trying to remove it posed a substantial risk. Another tumor, one by one centimeter, had breached the wall of his larynx and the thyroid cartilage. And a third, smaller tumor, sat near his right vocal cord.

"It's not a lot of tumor. It's that it's critically located. Local neck disease is not fun,'' said Dr. Nicholas Sarlis.

To compound the problem, Dr. Alexander suspected that the three tumors in Mr. Blake's neck were the tip of the iceberg. He believed that malignant cells were percolating throughout the neck, but had not yet shown up on the nuclear imaging or radiology scans.

"No doubt, there's thousands of invisible cancer cells,'' he said.

With surgery out of the question, Mr. Blake's doctors were recommending a combination of radiation and chemotherapy concurrently, to give the cancer a one-two punch.

National Institutes of Health, the government's huge, sprawling medical research arm in Bethesda, Md., is a place where doctors like Nicholas Sarlis take on some of the most difficult cases in the world, people with rare and unusual diseases. The patients agree to be part of the doctors' research and, in return, there is a glimmer of hope that the doctors will find something that works for them.

Mr. Blake, who has a particularly aggressive form of follicular thyroid cancer, has been a patient of Dr. Sarlis for three years. For the first few years, he spent two weeks each year in the Clinical Center, Building 10 at N.I.H., successfully undergoing radioactive iodine treatments that staved off the cancer.

Last summer, he got the bad news that the radioactive iodine had stopped working and the cancer was growing again.

Both patient and doctor then knew that if the small tumor in his neck grew, surgery would be the next option. Now, with second thoughts about waiting too long, Mr. Blake and his wife were facing a third plan of radiation and chemotherapy.

"Radiation is toxic,'' Dr. Sarlis was saying, his voice heavy with the accent of his native Greece. "There is edema. Tissue can swell and get you into problems that are acute.''

The swelling could lead to difficulty swallowing and, perhaps, breathing. At the mention of an airway obstruction, Mr. Blake slumped deeper into the couch. He had worried about losing his voice, maybe his ability to swallow, but losing his breath? Never.

His face flushed and contorted with the painful recollection of another time, a time in 1995 when he woke up after his first surgery and couldn't breathe or talk, how he tried desperately to tell his caregivers the problem, but to no avail. His brain called up images of the time he nearly suffocated when phlegm plugged his tracheotomy until finally, the mucus popped out.

"I can't tell you how hysterical I feel right now,'' he wept, his brow furrowed and hand over his mouth. "My demon is breathing. It's issues of asphyxiation.''

Diane Blake reached across and touched her husband's shoulder, speaking the words that, for months, she had been preparing herself to say.

"If we're going to go through all of this awful stuff, what's the point?'' she asked. "My concern is for the quality of life. I don't want Ric to go through lots of unbearable suffering and pain if it's going to get us nowhere,'' she said.

Mr. Blake is not at that point, the doctors said emphatically.

"I'm very far from saying this is a case where we shouldn't be doing anything. I believe there are a lot of good options. I'd look at this as a lot more than trying to stem the tide,'' said Dr. Alexander.

"The risk of doing nothing is immense,'' said Dr. Sarlis. "We'd be condemning you to a slow, torturous death.''

Still, the game plan has been ratcheted up a notch. Nothing is a sure thing. When Mr. Blake's body accepted doses of radioactive iodine for thyroid cancer, from 1998 to 2000, there was a reasonable expectation of success. Since that failed a year ago, they were treading new ground. There were no guarantees. The surgery would have been preferable, but now that was not an option.

Instead, Mr. Blake was left with cancer in his neck, and a possibility that radiation and drugs would kill or at least stop it.

To prepare his body for the side effects of radiation, Dr. Sarlis said, Mr. Blake would need to think about a feeding tube, called a PEG (percutaneous endoscopic gastronomy) directly into his stomach, to bypass the throat in case of swallowing difficulty, and a tracheotomy put in as a preventative measure, in case of airway blockage. The problem with the tracheotomy, however, was that radiation damage sometimes prevents the neck tissue from healing later, and the patient is left with a permanent tube in the neck, said Dr. Sarlis.

The chemotherapy would not pose many issues, especially because Dr. Sarlis would recommend a smaller-than-usual dose because the treatment would be combined with radiation.

"Chemotherapy is not a big deal. It's not like you see in the movies with people vomiting in buckets,'' he said.

The Blakes sat, absorbing the information. Mrs. Blake pushed herself to continue asking the hard questions.

"What's the worst possible effect from the radiation?'' she asked.

Acute swelling, in weeks four to five of radiation, could cause breathing obstructions, he said. There was also the outside chance of a perforated windpipe or bleeds from tissue made raw, but that is highly unlikely.

"You have to be logical. Logically, you may very well lose your voice intermittently,'' said Dr. Sarlis. And, should any of the more serious things happen, it would be good to have someone around.

"It's important that you don't brave it out, so that you're never alone at home,'' he said.

The combination of radiation and chemotherapy has been used widely for other cancers, but the approach is new for thyroid cancer.

Dr. Sarlis told the Blakes of other thyroid cancer patients of his who had tolerated the combination of chemotherapy and radiation well. An older man had an almost complete response to the dual therapy, and a woman with a case quite similar to Mr. Blake's, with tumors in her neck, would meet with the Blakes that week to talk about how her therapy was going. Dr. Sarlis had great hope that Mr. Blake's cancer would respond to the treatment, because aggressive cancers like his respond well to radiation.

As the doctors continued discussing the details of his treatment, Mr. Blake slowly regained his composure from what he calls one of his "Joan Crawford moments.''

He was feeling well enough to ask Dr. Sarlis how he felt about things.

"I feel good,'' he said. "You didn't have surgery that would have imperiled your healthy left side.''

He complimented Mr. Blake for insisting that they move up his N.I.H. visit this year three months earlier than usual.

"This was a very important visit, probably THE most important visit,'' said Dr. Sarlis. "In retrospect, it's a great thing that you came. It's great that you were saying, 'I don't believe the scans at Mass General.' I think if we kept on the September schedule, we'd be in big trouble by July or August.''

It is not that Ric Blake sat back and let his disease happen. He is as passionate and vigilant about tracking his disease as he is about life.

He had been concerned all year, starting from the time a pain popped up in his neck in September, at the exact location of the largest tumor, and continuing through two sets of CT scans and ultrasounds at Massachusetts General in September and January that showed nothing, followed by a nuclear PET (positron emission tomography) scan at Massachusetts General in March, which showed the tumor growing around his laryngeal nerve getting larger.

When the doctors at N.I.H. first told Mr. Blake the bad news last week, he blamed himself for not pushing even more.

"I'm really sad because I believe if I'd been here in December or January I wouldn't be in this position. Because we waited too long, my options are really reduced,'' he said. "'I've been telling Nick since September these are my symptoms, and my symptoms exactly match what all of the diagnostic tests now prove.

"I think the failure in my case is I didn't force Nick (Sarlis) and Gil (Dr. Gilbert Daniels at Massachusetts General) to get on the phone and come up with a decision to get me back here in January. Why didn't I do that? Oh God, because I'm tired. I'm sick of tests. I'm sick of feeling like my physicians don't listen to me, even though they want to,'' he said.

The roller coaster that advanced cancer patients ride. is ironic A year ago, Mr. Blake was saying there was no way he would ever consider being taken piece by piece. Then, when the time came, he wanted surgery, and now, he will accept the radiation and chemotherapy plan. Why? He wants to live.

"You know, I feel great. It's hard to believe that this has really gotten away from us and it's going to kill me,'' he said, just hours after hearing his test results. "I keep thinking they're going to say, 'Oh, that was not your test. We made a mistake, and you really are psychosomatic.' Give me neurosis -- I'll take it.''

By week's end, Mr. Blake's roller coaster car was chugging once again toward the peak of the hill. A meeting with radiation oncologist Dr. Rosemary Altemus boosted his spirits tremendously. Dr. Altemus saw no need for a preventative tracheotomy, since Mr. Blake's cancer is relatively small. He will need a feeding tube surgically placed before he heads home on Monday or Tuesday, and it will used as he feels necessary. He spoke with his medical "twin'' undergoing the same treatment and said he learned "not to be stupid.'' In other words, he should not be a hero and continue to eat by mouth if his throat is on fire from radiation.

"Diane and I are ecstatic, absolutely ecstatic. The PEG? I don't care about the PEG. Put a hole in my stomach,'' he said.

Mr. Blake will need a six- to seven-week dose of 6,000 to 7,000 rads of radiation done concurrently with chemotherapy. Dr. Altemus recommended radiating his entire neck and an area of his upper chest called the mediastinum, the area between the lungs that contains the heart, large vessels, and other organs and tissue between the lungs. That area is typically where thyroid cancer moves after it grows in the neck. Coincidentally, just as Mr. Blake has predicted every step of his illness, he is already feeling a tug, like an elastic band, in that area.

By Friday, the Blakes were pushing the doctors at N.I.H. to perform a fine-needle biopsy on the biggest tumor to see whether the cells have changed. If the pathology shows they are now "undifferentiated'' rather than "poorly differentiated,'' then that would mean the cancer would become very aggressive and the current treatment would likely not work. The Blakes might then want to rethink whether they want to pursue further treatment.

Even though Mr. Blake earlier lobbied to have his radiation at Massachusetts General, the Blakes had a change of heart once the doctors at N.I.H. mapped out the treatment plan. Mrs. Blake had wanted to be closer to home all along, and they ultimately decided that radiation treatments would take place at Holy Family Hospital in Methuen and chemotherapy at Lowell General Hospital.

Mr. Blake wants to set up his weekly chemotherapy sessions on the same day as his advanced cancer support group meetings. That way, he can sit with his IV pole and let the toxins drip into his bloodstream as he chews over the latest issues with fellow survivors.

At the top of the roller coaster once again, Mr. Blake seemed to be following exactly the advice Dr. Sarlis had left him with a few days earlier.

"It's real important to be upbeat. It's important to fight,'' Dr. Sarlis said.

Sunday, June 17, 2001

Seeking a miracle from the 'wizard'

By Marjory Sherman Eagle-Tribune Writer

Ric Blake likes to refer to his unique way of dealing with illness as "Ric's World'' and the National Institutes of Health hospital where he is treated as "Oz.''

In the wonderful world of Oz, otherwise known as the Clinical Center at N.I.H., research doctors from 14 different divisions, from the National Cancer Institute to the National Heart and Lung Institute to the National Institutes of Mental Health, treat patients who come from around the world, bringing their rare and unusual diseases.

"Some come here because it's the only place treating what they have. They have very rare illnesses -- they may be one out of 200 in the world (who have the disease.) Some have grave illnesses and have elected to try something experimental that may not necessarily help them, but may help someone else, and I'm sure they nurture a tiny hope that there might be the miracle,'' said Laura Cearnal, patient representative.

On Ric Blake's floor, the eighth, there are other patients who have thyroid disease, Cushing's Disease, and other endocrine and gland diseases treated by doctors from the National Institute of Diabetes and Digestive and Kidney Disease. Other floors have patients with HIV and rare infectious disease, people participating in Alzheimer's disease and genetic testing studies. There are also healthy people who have volunteered to be in control groups for studies.

When Mr. Blake is feeling up to it, he likes to sit at the Starbucks cafe on the first floor and observe the world around him. His heart breaks, he said, when he sees the patients who are really sick, the ones wearing a mask to ward off germs, maybe carrying their IV pole with them, the ones with a few wispy patches of hair that remain after chemotherapy. Those are the patients with a family member who looks worried to death, walking by their side.

Mr. Blake is devoted to his role as a "lab rat,'' as he calls it. If there is something new or different that can help him live better with his illness or may help others in the future, he wants to try it.

He leaves the medical decisions to his "wizards,'' Dr. Nicholas J. Sarlis and surgeon Dr. Richard Alexander, but he is always looking to experience everything that he can.

If that means touring the Clinical Center kitchen, undergoing acupuncture, drawing pastel pictures of his cancer growing around the laryngeal nerve, going into a trance-like state in music therapy, or lining up incense on his radiator to erase "hospital'' smell, he will do it.

"I think he is an exceptional person. I would expect he would be this way about getting his car fixed, or his garden. I think he's passionate about things. He wants to know things. He's certainly very bright. How he is as a person is reflected in how he is now, in his illness,'' said Mrs. Cearnal.

In his first few days in Bethesda, he asked for a tour of the Clinical Center kitchen, probably a first among patients. He got himself a white paper chef's hat and had everyone sign it. He also tried a new form of recreation therapy in which the patient sits on one of four leather chairs that vibrate to music orchestrated to the seven chakras, considered in yoga to be the center of energy for spiritual and psychic power. He said afterwards that he felt as though he went into an otherworldly place and felt spectacular when he finished.

Later in the week, Mr. Blake had his hair cut by a Chinese couple who run a hair-styling shop in the building. He's been to them on prior visits with great results, but this time, in anticipation of chemotherapy and possible baldness, he shaved off his beard and hair, leaving only a small mustache.

"I look like a cancer terrorist, an anarchist,'' he laughed. "It's not a pretty picture. It just scares me when I see myself. ... I look like Donald Sutherland on a really bad day.''

For Mr. Blake, living with advanced illness means just that. Living. To that end, he had become a crusader for palliative care, the support system for people with advanced disease that addresses pain management, spirituality, the quality of life. He agreed to allow The Eagle-Tribune to follow his story this year because he wanted to start the conversation in Merrimack Valley about the need for such care.

At the Clinical Center's newly opened Palliative Care service, Mr. Blake got the full spectrum of care during his two-week stay. By the time a reporter and photographer arrived a week into his stay, he had assembled his own "team'' -- a psychologist, chaplain, acupuncturist, recreational therapist, and art therapist. He wanted the massage therapy, too, but that would have to wait until next time.

Crucial for Mr. Blake were the bearded psychologist named Dr. Jacques Bolle; a nurse who has a doctorate in thanatology, the study of death as it relates to medicine and sociology; and Dr. Landis M. Vance, a spiritual minister with salt and pepper hair and a kindly manner. Both could talk with Mr. Blake, and truly understand the emotions roiling in a person dealing with advanced illness.

On the very day Mr. Blake was to learn if surgery would be a possible for the tumors in his neck, he forged ahead with this palliative-care schedule. He brought his entourage to his session with Dr. Adeline Ge, a soft-spoken, smiling practitioner who promised that ancient Chinese therapy can alleviate pain and depression.

She demonstrated a simple way he could alleviate pain by massaging the area between his thumb and forefinger, a form of acupressure. Then she then applied four hair-thin needles, two to his shoulder, one in the wrist and another in the forearm. She wheeled in an electrical machine and attached lead wires to two of the needles, to stimulate the passageways.

An hour later, Mr. Blake reported the pain in his shoulder was completely gone.

While he was in the acupuncture room, in walked Dr. Vance, the spiritual minister. In minutes, Mr. Blake was sharing his deepest fears and thoughts.

Mr. Blake explained to Dr. Vance the shock of learning his latest situation, and the fear of losing his voice.

"I've never lost my voice since the "trach.'' I told Jacques this morning it's pretty much my panic button. ... It is beyond my ability to comprehend that the tumors would already have gone into the trachea and larynx,'' he said. "But I've made some pretty good decisions these last few days.''

"The best thing was when Jacques said this morning, 'This is your team and you're in charge,'' he said. "I said 'Ahhhhh, this is Oz.' ''

Dr. Vance listened to Mr. Blake explain his "Joan Crawford moment'' when he got the bad news.

She smiled at his humorous terminology, and invited him to call the team during any of the "Joan Crawford moments.''

"It's a journey, and every minute is different from the last one. There are highs and lows,'' said Dr. Vance.

For Mr. Blake, the palliative-care team has become his anchor.

"You know, I've been here without it (before the programs opened) and it's much harder. Now I know I just need to make a phone call, and all of you will be there,'' he said.