Sunday, January 28, 2001

One man's battle with terminal illness

By Marjory Sherman Eagle-Tribune Writer

Ric Blake is not afraid of dying. It is figuring out how to live well until death comes that worries him.

Five years into his battle with thyroid cancer, Mr. Blake, 55, learned in July that the "magic bullet'' radioactive iodine treatment that had been keeping his cancer at bay has stopped working. His cancer is growing and there is no effective treatment to stop it.

"Short of being hit by a bus, this cancer is going to kill me,'' he said. "Now what we do is wait until each new tumor appears and deal with it.''

The words come without bitterness or pain or anger. They are stated as fact in a softly resonant and slightly raspy voice that often erupts in laughter, a voice that bears a touch of Mr. Blake's native West Virginia accent.

When the reality hit this summer that his illness is terminal, the news initially knocked him off his bearings, but it soon led to his quest for good comfort care and the realization that it does not exist as a whole package. Eventually, it led to his decision to share his story.

"Telling my story is a way to get the conversation about end-of-life issues to the public,'' he said.

Life's irony is that Ric Blake has a terminal illness but he still looks and feels quite well. He is a tall man, wears glasses and has a full strawberry blond beard. He giggles a lot and talks even more.

Mr. Blake drives every day from his home in Londonderry, N.H., to work as public information director at Greater Lawrence Family Health Care, a huge health clinic serving 35,000 people.

He still pumps out press releases on everything from polio in the Dominican Republic to Latino health care initiatives. He is busy planning two conferences with personal meaning for him -- a regional thyroid cancer conference May 19 at Massachusetts General Hospital and a regional meeting on palliative care, the term for the comfort and emotional care of people with terminal illness.

Even though by all appearances Mr. Blake seems well, there are little signs that all is not quite right.

In the past few weeks, he has not been as chipper as usual. He needs more sleep.

"I'm actually getting tired, I'm just starting to fade. I'm beginning to need more sleep,'' he said. "My sleep pattern has always been the same, 4 1/2 to 5 hours. Now I'm needing 6 or 7 hours. It's not a big difference, except to me.''

Odd sensation

There are other minor changes, little symptoms that he notices if he really pays attention. There is a "funny feeling'' in his throat that may (or may not) turn out to be a tumor. It is an odd, tight sensation, like a rubber band, tightly pulling from his left jaw line to the clavicle.

He does not panic or obsess about the possibilities. He feels more like an observer of an illness, albeit a likely fatal illness, taking over his body.

"Who knows what this is? I don't get weirded out. I'll wait for the results, and then let them come talk to me. I'd rather be thinking about how blue the sky is, how great the snow is,'' he said.

Mr. Blake's upbeat manner impresses everyone, including his wife of 33 years. Diane (Zanfagna) Blake has seen her share of very sick people in her role as bereavement coordinator for Merrimack Valley Hospice. Yet , she finds something different, even comforting, about her husband's clear-headedness.

"He has such a good, positive attitude that I could stay in serial denial forever,'' she said.

It would be easy for Mr. and Mrs. Blake to abide by what he calls the "Scarlet O'Hara'' mode of "I'll think about that tomorrow.''

But he is far too much of a realist.

Mr. Blake knows the disease will get him in the end, and before it does, he wants to make some changes in the region's health-care system for himself and for all the others who have a poor prognosis but who are not ready for hospice.

When his doctor at the National Institutes of Health in Bethesda, Md., gave him the news this summer that radioactive iodine therapy was no longer working for him, he cried. Not merely shed a few tears, mind you. He sobbed.

"For the next day or two I took long walks, I was up at 5 a.m., and I would think, 'What am I going to do with this?' You lose your future. Your future becomes ill-defined.''

Mr. Blake says his tears were not about dying. They were about how he is going to live with uncertainty and the prospect of dying piece by piece.

While he still feels well, he is taking this year to put his plan in order.

He divides his time between work, planning the regional conference on palliative care, and managing his own illness and care. He plans to meet with a nutritionist and pain management team when he returns to Massachusetts General Hospital this spring.

In the same boat

One aspect of terminal illness that he feels is important is the opportunity to talk with others in the same boat, people who also face an uncertain future.

In 1996, he joined a support group, the only one he could find. It was filled for the most part with men diagnosed with prostate cancer.

"I went to the Wellness Center. I learned a lot of prostate cancer jokes and it was funny and it was heartbreaking,'' he said. But it wasn't for him. He later started the first thyroid cancer support group in the U.S. at the Greater Lawrence Family Health Center.

When he came back from the National Institutes of Health last fall, he was looking for a group to fit the niche of people whose treatment doesn't work but who are not ready for hospice. He found it at a newly begun advanced-cancer group at Lowell General Hospital.

One of the issues that comes up in the late-stage cancer group is that people with certain cancers are candidates for long-term chemotherapy and radiation, while others are not.

Mr. Blake is of two minds about these patients who go for chemotherapy every week for the indefinite future. Part of him is relieved that his cancer will not respond to such treatment, but the other part wishes he had something, anything, that might be a magic bullet.

Even without a magic bullet, Mr. Blake shows up every Tuesday night for the advanced-cancer support group in Lowell. By January, the group had grown to six, two women and four men.

Growing tumors

Mr. Blake's prognosis worsened in early January when a test at Massachusetts General showed there are likely multiple metastases, tumors that have spread from the original thyroid tumor, in his lungs. His cancer marker thyroglobulin has climbed steadily from 21 to 31 since the fall.

"My tumor marker is increasing. It means my cancer is growing. Sooner or later the tumors that are growing will be removed, if possible. If they're conveniently located,'' he says, laughing at his own euphemism. There are certain tumors, especially in the lungs, that are inoperable. He knows that, too.

His endocrinologist, Dr. Gilbert Daniels at Mass. General, is taking a wait and see posture.

"My ever-optimistic endocrinologist at Mass. General is saying, 'Let's repeat the test in a few months,' '' he said.

A 'bizarre' journey

Mr. Blake's cancer never behaved as doctors thought it would.

"It's been very different, very bizarre, from day one. It's never done what it's supposed to do,'' he said.

Doctors removed a tumor the size of an orange from Mr. Blake's throat in 1995. The surgery paralyzed his vocal chords. He had to have a tracheotomy for three months.

"Life without a voice seemed an insurmountabe obstacle,'' he said. This is a man whose voice is his very lifeline.

Mr. Blake lost his voice, and himself, for a time.

He slogged through months of isolation and pain before marshaling his own reserve of curiosity to go out in the Internet and find other thyroid-cancer survivors. From that grew a host of support groups and an international group called ThyCa -- the Thyroid Cancer Survivors' Association Inc. -- and an annual conference that draws the top medical names in the field to talk to consumers.

Thyroid cancer is usually first noticed as a single, firm nodule in the neck. It is relatively rare, accounting for only 1 percent of all cancers. The cause is unknown, although it is one of the cancers associated with exposure to radioactive fallout.

Mr. Blake's cancer appeared seemlingly from nowhere when his thyroid ruptured, leaving a huge swelling on the side of his neck.

His thyroid cancer was high risk from the start. It was already in Stage 3 of four possible stages, having invaded the jugular vein outside the thyroid bed. Lab tests showed it was Hurthle cell, a type of follicular cancer that is more aggressive and less predictable than most.

Doctors in Southern New Hampshire put him through two rounds of radiation, but tests ultimately showed the cancer was still there.

Benign tumor appears

Then a benign tumor called a neurofibroma appeared on his side, by his ribs. He and doctor friend who is a family practice resident at his office at Greater Lawrence Family Health Center began researching whether there was a link between the benign tumor and thyroid cancer. Finally, an associate he had met through ThyCa suggested that his case was so complex that it might appeal to the National Institutes of Health.

It did and they invited him to the National Insitutes for Diabetes, Digestion and Kidney Disease.

"Because it's the world's largest research hospital, you have to be a really interesting case to get there,'' he said. "They take cases that are not going to be successfully treated somewhere else.''

He made himself a T-shirt that said "New Hampshire Lab Rat'' on the back, started calling himself jokingly a "cancer terrorist,'' and headed off to Bethesda, Md.

"The reason they love this disease (his own case in particular) at NIH is because it doesn't do anything it's supposed to do. It's going to be a footnote in someone's book someday,'' he said.

The doctors gave him a first round of radiation and sent him back to New England on a huge dose of a synthetic thyroid called synthroid, .257 micrograms a day.

His endocrinologist in New Hampshire refused to fill the dose, worrying that the amount of synthroid would make him hyperthryoid. Instead, the local doctor referred him for another opinion to Dr. Daniels at Mass. General, who agreed with the National Institutes of Health plan. Mr. Blake has continued, since then, to go periodically to both the institute and Dr. Daniels.

A lot of head stuff

These days, much of Mr. Blake's time is spent getting to the right place emotionally.

"There's a lot of head stuff you have to do,'' he said. "It's really complicated being sick.''

When he saw Dr. Daniels in January and learned that his tumor marker was up and a scan showed the same nodules in his lungs, he had to take a step back.

"Some information is just more than I want to know. I'll wait until the spring. Then, if you get bad news you can just beat the hell out of the weeds,'' said the master gardener.

The day of the last doctor's appointment was difficult. He was supposed to go from his doctor's office to meet an autolaryngologist, an expert in vocal chords, to talk with him about working for ThyCa, but he just couldn't.

"I had to go home. I was just... tired. Sometimes you kind of need to pull up the drawbridges and close the castle,'' he said.

He and Diane went home, had dinner and took a walk. And they talked. And pretty soon just the talking alone seemed to help.

It is not that Ric Blake wants to hide his head in the sand.

He wants honesty and compassion from his doctors. When they say, as they did last time, that waiting is the best plan, part of him wants more.

"It actually makes me feel very badly prepared because I and a lot of other patients would actually rather have the worst-case scenario,'' he said. Then, if things turn out better, it is a bonus. "Anything that's better than that is a pleasant surprise.''

His theory about doctors is that they, and not the patients, are the ones who are more optimistic.

"I think they have to avoid false hope, but they also need to be very realistic with their patients who want that information. I have to have the information, and I want them to tell me their guesses. Doctors don't like to guess.

"I think they just simply hold on to hope much longer than patients do. I think they have a much higher need to hold on to hope because they're waging a war, and they're going to win and they're not going to let this disease kill them (the patient). Their whole training is about winning... that also becomes tiresome,'' he said.

"Doctors, I think, don't get the nuts and bolts. I have to look at my whole life, not just the disease, but my family, my job, my finances, my psyche. What concerns me is then when the patient loses the battle, then they withdraw, they turn it over to someone else, and the patient's left fighting the rest of the war by themselves.

"I want the doctor to give me worst case, best case and best guess. And then I want them to stick there, all the way to the end. Just cause we're going to lose the war, doesn't mean that everybody has to leave the field,'' he said.

Making decisions

Once he realized last summer that his disease was changing, he made some decisions. He decided to use this year as a year of planning and gathering information. He wanted to continue to work, but he also wanted to put his ducks in order.

"I want to work and be productive as long as I can because I love my job,'' he said. "I have a gift of time to be able to do that."

But he also wants to plan for his own care while he is able.

"One of the things I'm going to be looking at is stress reduction and probably looking at meditation and hypnosis,'' he said. He planned to meet with Dr. J. Andrew Billings, director of palliative care at Mass. General to talk about meditation and hypnosis.

"This year is actually the year to be making plans, looking at options, trying to follow the disease,'' he said. Then he stopped and put on his own humorous spin.

"Hey,'' he said. "It's a boy and his plan.''

Monday, January 29, 2001

Patient fighting so others can die a 'good death'

By Marjory Sherman Eagle-Tribune Writer

After Ric Blake learned last July that the treatment to keep his cancer at bay was no longer working, he returned to the Merrimack Valley seeking the comfort and emotional support for the very sick called palliative care.

He imagined that the help would await him when he arrived home from the National Institute for Health in Bethesda, Md. -- a nutritionist, pain management, a support group, social services, end-of-life directives.

Then he found out that palliative care in this region does not exist as an organized entity.

"There is no palliative care,'' Mr. Blake said. "I thought the services were there. Oh, PUH-LEEEZE.''

While Merrimack Valley Hospice has made steady gains in its care of the dying for the last 20 years, there are few options for those like Mr. Blake, for whom treatment no longer works but who are not ready for hospice.

"No matter what hospice has, you can't access it until your doctor signs off that you're six months from death,'' said Mr. Blake.

"In hospice, the way it's been, you stop treatment. You give the patient comfort care, you provide all the services, but you don't do treatment to extend the patient's life. With palliative care, you provide all the services, but you also continue treating the disease. The fight continues,'' he said.

As Mr. Blake's own fight goes on, he is also fighting to call attention to the need for palliative care in the Merrimack Valley.

"There is no coordinated effort locally,'' said Dr. JoAnne Nowak of Andover, an expert in palliative care. "It's based on the individual skills of doctors and nurses and therapists. So if you're lucky, you get a doctor who has the understanding and willingness to devote to the full package of palliative-care services.''

Even in Boston, palliative care services are just beginning at places like Massachusetts General and Beth Israel Deaconess hospitals.

"All of these programs are in their infancy,'' said Mr. Blake, 55, of Londonderry, N.H., who has advanced-stage thyroid cancer. "They're not really well-developed.''

Mr. Blake decided to begin the discussion of palliative care for the entire region while in the midst of setting up his own care.

He called every hospital, every agency, in the Merrimack Valley, looking for whoever is most interested in the care of the dying. In a few weeks, he had amassed a list of 20 people who know about death and dying.

Then he began the conversation with a group loosely called the Merrimack Valley Coalition for Improving End of Life Care. A series of planning meetings is under way for a conference this year on end-of-life care in the region, and small workshops are planned for the spring around the time that the Bill Moyers series on dying, "On Our Own Terms,'' is re-aired.

From the perspective of Mr. Blake and others, end-of-life care need not wait until the last six months of life, as prescribed by hospice.

"I think what we do in this country is we wait too long in the progression of a disease to begin providing service that some patients, like me, want,'' said Mr. Blake.

In the forefront of the fledgling discussion on end-of-life issues in the Merrimack Valley is Dr. Nowak (pronounced NOH-vack) of Andover, an internist who did a yearlong fellowship at Massachusetts General Hospital with special training in palliative care. She recently left Lowell General Hospital where she spent a year looking into the possibility of starting an in-house palliative-care program, but she still holds out hope for such a service in the region that would incorporate pain control, social service, pastoral counseling, nursing and physical care.

"I think locally the hospitals need to make a commitment to forming palliative-care teams to bridge the gap between acute care and hospice care, to coordinate the very complex spiritual and emotional needs of patients who are eventually going to die of their disease,'' said Dr. Nowak.

"I still would like to see a hospital-based palliative-care unit set up somewhere in the Merrimack Valley,'' she said.

Initial studies have shown that the cost of such units, in the long term, is less than repeated hospital visits for emergencies.

The first step is raising awareness and talking about death, said Dr. Nowak.

"We all live as though we're not going to die until we're faced with that issue. Part of it is just beginning to talk about it,'' she said.

Sheila M. Scott, director of the 20-year-old Merrimack Valley Hospice, is perhaps best informed about the need to better promote the value of hospice care. She knows that people in the Merrimack Valley come to hospice very late in the process, on average, within 30 days of dying.

"We're trying to encourage physicians and hospitals to really call us, and call us early. The earlier we get to these patients and their families, the better the experience for them,'' said Mrs. Scott.

Dr. Nowak agrees that doctors need to encourage people to enter hospice earlier, where hospice is appropriate. But she is an advocate for care beyond hospice, too.

"There's going to be a lot of people who, even though they may be dying next month, may still be getting palliative radiation or chemotherapy ... but you don't want to deny them emotional care,'' she said.

Improving end-of-life care is a growing concern nationally. Recently the respected Journal of the American Medical Association devoted an entire issue to the topic. Experts found that nearly 80 percent of Americans die in hospitals or nursing homes, very often bedridden, incontinent, and in pain. They also found that very few write advance directives outlining whether they want heroic lifesaving measures.

Doctors need to "have the courage'' to have end-of-life discussions with patients, wrote Dr. Timothy Quill of the University of Rochester.

Someone who is beginning to train local doctors on dealing with terminal patients is Judith Fleishman, behavioral scientist at Greater Lawrence Family Health Center.

She is faced with the existing model of medicine in America that makes doctors feel like failures if they cannot save a life.

"In mainstream medicine, dying is still a failure of medicine. It is not part of the repertoire of what they do with people,'' said Dr. Fleishman.

Part of Dr. Fleishman's goal is to teach new doctors to be good listeners.

She has all of her young residents read "The Death of Ivan Ilyich,'' by Leo Tolstoy. The short story speaks beautifully to the profoundness of loneliness in death. Dr. Fleishman uses the reading to show her young physicians that medicine does not have to be that way.

"I try to tell them how important it is, just having someone understand and witness your experience. How that happens can be in a lot of different ways,'' she said.

Even when the physician and patient have reached an agreement that the illness is terminal, further issues arise surrounding pain relief, and whether and when to use technological advances that can prolong life. Use of tools such as ventilators and respirators needs to be discussed in terms of the quality of life.

Even though most studies show that pain is grossly under-treated, the experts say there is no reason for someone to be living, or dying, in pain.

In the final days, the issues patients need to share focus on letting go, actively or otherwise.

Dr. Fleishman tells the story of her own "profound'' experience when her wise and outspoken elderly father decided to refuse further treatment before his death 18 months ago.

"He was really clear about what he wanted. When it was time to go, he wanted to go,'' she said. It took a concerted effort on the parts of her father and the entire family to allow her father to die the way he wanted.

"It really took a lot of work in the end to get them to do what we wanted (which was to withhold antibiotics and the feeding tube.) I was shocked at how hard it was for me. I work with doctors, I work in medicine, I am a PhD in psychology.''

Still, she was glad that she insisted on following her father's wishes, and that she read and talked a lot about dying during that time. The she did something that is usually taboo.

"A week or so before he died, I said to him, 'Do you think about dying?' He said, 'This is a terrible thing to talk about to my youngest daughter, but I think about it all the time.' ''

The question opened another door for the father and daughter, one that she is to this day grateful that she pursued.

"It let me go to another level. We continued down this path. ... My father died a good death. It wasn't until my father died that I understood that concept, that there really is a good death. I miss him,'' she said.