Sunday August 25, 2002

What he seeks: Sympathy

Marge Sherman Eagle-Tribune Health Writer

It was chemotherapy day for Ric Blake, and before the plastic intravenous line was even inserted in his arm, he felt fatigued and emotionally drained.

He had kidney pain. He was tired. And then a series of little hurts made an already dicey situation even worse.

His nurse left him sitting alone for what felt like an eternity in the infusion room at Holy Family Hospital Cancer Center as she whizzed back and forth. The hospital pharmacy prolonged his visit by failing for an hour to send up one of his medications, the drug zometa, which is supposed to prevent bone fractures in advanced cancer.

Nobody in the cancer center seemed interested in copying an armload of test results he had hand-carried back from his last checkup at the National Institutes of Health in Bethesda, Md. And, as it turned out, he was not scheduled to meet with his oncologist that day, so his questions about his back and kidney pain went unanswered.

No single person or specific incident set off Blake, 57, that Monday morning.

What drove him crazy was the system.

In the life of a cancer patient, the medical establishment treats the illness with the big guns of drugs and radiation, but the hard part is finding someone who can offer a more fine-tuned defense -- a sympathetic ear or a thoughtful response.

Doctors and nurses can fall short in that area, often because they simply do not have enough time. The lack of communication can stymie and frustrate even those patients who are as resourceful as Ric Blake.

That morning, he felt as though he were alone on his journey. He happened to be at Holy Family in Methuen, but he could have been at virtually any medical institution, anywhere.

"If you're not able to advocate for yourself because of being exhausted and not feeling well, if you're not having a good day, then everything can come crumbling down,'' said Blake's wife, Diane, 59. "It's almost like you have to be in crisis to get people's attention.''

In the months since Blake invited The Eagle-Tribune to follow him on his path with an unusually aggressive and terminal form of Hurthle cell follicular thyroid cancer, he has been a beacon for other patients, entreating them to be their own advocates, to ask for the best medicine can offer and to be equal partners in their care.

But even assertive patients like Blake sometimes face roadblocks so substantial that they feel like giving up.

"My issue at the end of July was maybe it's time to quit. Maybe I need to stop chemotherapy. Maybe I need to just stop testing. Maybe I need to just not see doctors anymore, and just live,'' said Blake.

Then, slowly, he reasserted himself and got what he needed -- better pain control, Ritalin for the fatigue and tiredness which his internist dubs "chemotherapy-induced narcolepsy," and answers to whether radiation last year caused a nerve problem in his arms and legs.

Today Blake feels better, but the unanswered question lingers.

What will happen when he's too tired, too depleted to engage his doctors in thoughtful discussions about his case? What will happen when he no longer has the energy to pursue medical detail with e-mails and telephone calls to doctors?

"Can I continue to be the case manager? Even right now, I am tired of being case manager,'' he said. ''I'm exhausted physically, emotionally, and psychologically. I am exhausted from constantly having to pay attention to all of the details and make sure everybody's on the same page. I send everybody's answers to everyone else.''

Blake's illness is now in a seeming holding pattern. The cancer has spread to three or four small spots on his bones -- but thyroid cancer, even the most aggressive kind, spreads much more slowly than other cancers, say of the lung or colon or pancreas.

"How goes the war? We're at a stalemate right now,'' said Blake. "The issue is, one of these days I'm going to grow a tumor and it's going to be someplace that we can't treat. That's where we're going to be sooner or later. We're just not there yet.''

One year ago, Blake had the bald-headed, gaunt look of a cancer patient undergoing treatment -- in his case, taxol and radiation treatment that ultimately reduced the tumors in his neck by half. By September, his weight dropped to 204 due to an infection and he was forced to resort to using a feeding tube to insert fluids and medicine directly into his stomach when radiation and chemotherapy left his neck too inflamed to swallow.

"Last year Ric was very, very sick at this time. He was losing weight like crazy. So right now, he seems wonderful to me, '' said Diane Blake. "But disease is a very tricky thing. I could delude myself to thinking, 'Oh, he's going to get better.' That's what's scary to me.''

Even though Blake's hair has grown back and his weight is up to 224 pounds, there are still problems lurking just beneath the surface. His pain level is higher, requiring more drugs, and he feels more fatigued.

"Last summer, I looked as sick as I was. This summer, I don't look as sick as I am,'' he said. " I've been in a lot of pain, but I don't look it, because pain doesn't always show.''

The biggest glitch for Blake is a problem partly of his own making. In his quest to get the best care for his disease, no matter the location, he sees doctors at four hospitals in three states -- Massachusetts, New Hampshire, and Maryland.

Blake travels to the National Institutes of Health in Bethesda, Md., several times a year to be examined by Dr. Nicholas J. Sarlis, the brilliant research doctor at the National Institutes of Diabetes and Digestive and Kidney Disease, who designs his overall treatment plan for thyroid cancer.

Closer to home, Blake visits Holy Family Hospital in Methuen each month for infusions of the chemotherapy drug zometa, overseen by oncologist Dr. Yamil Kouri. And in between, for whatever else ails him, Blake sees his primary care physician Dr. Donald McDonah in a Nashua, N.H., family practice office affiliated with St. Joseph's Hospital.

Blake also has consulted with doctors at Massachusetts General Hospital, Massachusetts Eye and Ear Infirmary, and Lowell General Hospital, where he still attends a cancer survivors group.

With medical care splintered at institutes halfway down the East Coast, it falls to Blake to inform one hand of what the other is doing.

"I've found that unless I am a very squeaky wheel, my quality-of-life issues are the last thing addressed. Unfortunately, I can only be a squeaky wheel when I'm able to effectively advocate for myself, and frankly, I'm tired. My question continues to be: I'm the patient; why do I have to do this?''

What he's taken to doing is e-mailing doctors and nurses.

Until a few weeks ago, he kept those missives to a minimum. Slowly, over the summer, his perspective changed. He was frustrated with one doctor's one-hour-late arrival without apology.

He was curious why no one told him that the radiation he had last summer could have caused the electric, tingling feeling in his limbs all year, called Lhermitte's syndrome. And, he is already feeling the loss of Dr. Sarlis, who has taken another job starting in January outside of government medicine, at M.D. Anderson Cancer Center in Houston, Texas.

Because his case is in flux, he has tried all the harder to grab hold and get some answers. Oftentimes, he will go out to his garden, lush at summer's peak in early morning, then return to his computer in his Londonderry, N.H., condominium to chat online with friends, thyroid cancer survivors, and doctors.

Responses to his e-mails penned at all hours, even 1 and 2 in the morning, are not instantaneous, but they do help tremendously when they arrive by telephone or note.

From NIH Director of Palliative Care Dr. Ann Berger, he got a higher dose of pain killer MS Contin and advice that his back pain could be "referred'' pain from the cancer in his bones. From Holy Family Cancer Nurse Manager Karl Magnussen, he reached a conclusion that his primary care physician, McDonah, should be the point man on his case. And from Sarlis, he got a detailed answer explaining what could be causing his white blood cell count to drop to 2.8 (from an average 3.6) and why it warrants close watch.

As Blake moves forward, he is drawing on resources a little closer to home.

He skipped his August chemotherapy session at the Methuen oncologist's suggestion and plans to return to the Methuen hospital in mid-September for what may be his last visit.

He is seriously considering consolidating his care in Nashua, N.H., with doctors that would be in closer contact with McDonah. A longer-term benefit would be their contact with the hospice in Amherst, N.H., where he has decided to spend his dying days, whenever those may be.

And while he still feels well, he plans to continue under Sarlis' care at NIH, at least through December.