Annie McSmudge: Their cat, Annie McSmudge, adopted Diane and Ric in 1992

Sunday, April 8, 2001

The agony of waiting

By Marjory Sherman Eagle-Tribune Writer

The thyroid cancer in Ric Blake's neck is growing.

It is large enough to show up on two different radiology scans, big enough at one or two centimeters to cast a shadow over his entire being.

Suddenly, his life is in limbo.

"It's a lot of hurry up and wait,'' he said.

Knowing there's cancer growing and needing to wait are more unsettling than anything Mr. Blake has encountered since he agreed in January to allow The Eagle-Tribune to follow his personal journey.

He is grappling with some weighty issues. Last week, he updated his advance care directive, originally written in 1982, and began choosing the medical team that will eventually operate on his tumor.

"No one but a fool would let a surgeon cut their throat without having an advance care directive because without it, you're leaving the decision to someone who doesn't know you,'' he said. "You could be leaving the decision to a medical professional who doesn't know you and doesn't know your values.''

Failing that, life-and-death decisions could fall to family members already swept up in the emotional turmoil and unsure of what course the patient would choose.

"You could spend the next 20 years on a ventilator, paralyzed, and I'm sorry, but that's just one party I don't want to go to,'' he said.

Decisions about where to turn for further treatment are facing Mr. Blake.

He feels an urgency to have his tumor removed immediately, but he knows doctors need to wait until it is large enough to "see'' on a radiology scan such as an MRI (magnetic resonance imaging) or CT (computerized tomography) in order to get a road map to the cancer.

Until then, Mr. Blake is stuck on hold.

He still works full time in public relations, energizes volunteer groups, photographs, and pines for his garden, but thoughts about the tumor and what to do about it hang in the air.

He swears the area where the tumor is growing hurts, aches really, but doctors tell him that thyroid cancer does not cause pain.

Yet still, he is terrified, not about the cancer itself but about one particular side effect of the surgery.

Since the tumor lies precariously near his trachea and the laryngeal nerve that supplies his vocal cords, the surgeon who operates will be in the difficult position of trying to remove the tumor while saving the vocal cords.

"My worst nightmare is that I could lose my voice. You lose your inflection; you lose your affect. You lose all of the things that make communication rich,'' he said.

Ric Blake is, of course, a professional talker. As public relations officer at Greater Lawrence Family Health Center, he gives a voice to the missionary zeal the clinic doctors take in caring for poor, mostly Latino patients. He makes things happen with his sheer enthusiasm, chatting up doctors and nurses and writers and forging coalitions for them all, coalitions on palliative care, thyroid cancer, World AIDS Day.

Now he faces a big question mark. What would life be like without his voice?

"The story of advanced, progressive cancer is dealing with challenges every step along the way. How can you do that without your voice?'' he asked. "You lose your spontaneity You're lying in bed and you want to say something, and you can't.''

Mr. Blake knows full well the terror of losing his voice. When his cancer was discovered and his thyroid gland removed in 1995, his vocal cords were paralyzed. For a long while, he breathed with the help of a tracheostomy.

He awoke one night at 4 o'clock in the morning and couldn't breathe. Mucus had plugged up the plastic pipe in his neck. He had the panicky feeling of wanting to yank out the tube and rush to the nearest emergency room.

"It was terrifying,'' he said.

Finally, he dislodged the plug with vigorous suctioning. When it popped out, he saved the clot of mucus that nearly killed him, threw it in a drawer with other medical mementos he had collected along the way -- tubes, bloody gauze, prescription bottles, a wrist band, the tracheostomy tube. One day a few years later, he laid out all of the pieces of his illness on the floor and photographed them in many angles and groupings. The result was a collage.

"It was a catharsis. It was a way to just get rid of bad memories. But I needed to saved the stuff and do something. It's like exorcising demons, and I did,'' he said. Then, he was able to finally throw the stuff away.

Mr. Blake has notes from his first surgery that he scribbled when his vocal cords were paralyzed. They say things like "I can't talk'' and "I can't swallow'' and "Will I ever talk again?'' and "Where is my wife?'' He could not read those notes until he made the collage.

Now today, facing another surgery and the renewed possibility of being voiceless, he forces back tears on one issue.

"There are still things I can't talk about. I really can't talk about not being able to talk to my wife and my mother again without getting very emotional. I start to tear up,'' he said.

The experience in 1995 made him a wiser and more assertive patient.

"I'm a much better educated consumer now,'' he said. "We're not going into this surgery blindly. This time, I'm going to say, 'Just in case I wake up without a voice, what's the plan?' ''

If anything, Mr. Blake's experience with the medical establishment has taught him volumes about advocating for himself.

"This is the story about being an assertive patient and asking lots of questions continuously every single step of the way,'' he said.

He giggles as he recalls an incident at Massachusetts General Hospital a few weeks ago when he firmly informed a clerk that he wanted to view his positron emission tomography (PET) scan images taken that day. Though the woman tried to fend him off, Mr. Blake knew his rights and, of course, he prevailed.

"It's Ric's world,'' he said, grinning at his own tenacity.

"Usually I'm pretty easygoing about stuff, but this PET scan is really important because it was going to show just how large the growth was. I just wasn't going to leave there until I got my results. If I hadn't got them I would've gone to the patient advocate,'' he said.

"I don't care if they're upset. I don't care -- be upset. It's my life,'' he said. "I know what my rights are and I have the legal right to look at my own documents and my own test results. They really can't deny me that.''

Mr. Blake thoughtfully considered which hospitals and physicians to see, which is the best treatment plan for him, how to go about getting the best medical and comfort care.

"The patients I know with thyroid cancer who are in trouble, who didn't have an aggressive, vigorous physician ... by the time they came back a year or two later, it was too late,'' he said.

Mr. Blake's troubles have nothing to do with a laissez-faire attitude. He is one of the few dealing with an aggressive, virulent form of follicular thyroid cancer, the Hurthle cell variant, that was already in Stage 3 when doctors found it.

"Mine is one of those really nasty cases,'' he said.

His questions in recent weeks dealt with how to proceed.

News in late March confirmed the cancer recurrence doctors first spotted in July in a PET scan at the National Institutes of Health in Maryland, where he has been a patient for three years. Massachusetts General Hospital tests showed increased metabolic activity to the left of his trachea, indicating a recurrent tumor, on a second PET scan and a sestamibi scan that uses thallium as a nuclear tracer to find the cancer.

The doctors know already that radioactive iodine usually used to stave off cancer in thyroid patients no longer works for Mr. Blake. The options now will be surgery, cutting out pieces of the body where the cancer grows, as it is now in his neck.

The question was where to undergo the operation: Massachusetts General Hospital or NIH?

"They're two of the top places in the world,'' he said.

At Massachusetts General, he is within an hour's drive of his home in Londonderry, N.H. He has a renowned endocrinologist, Dr. Gilbert Daniels, and the surgeons who would operate are stars in their field.

"The hard thing is, I don't want to leave my family and friends and garden, and my cat (18-year-old Annie, the empress dowager), who is old,'' he said.

There is also the lure of NIH, where everything possible is at the doctor's, and patient's, fingertips.

"When I walk through the door at the clinical center at NIH, there is an entire team of scientists and physicians and surgeons who know me and know my case and have spent the last three years studying it,'' he said. "Whatever my physician at NIH (Nicholas Sarlis, M.D., PhD) thinks we need, he and the team will take care of it,'' he said.

"I don't have to do anything except understand and be an effective partner with them. I don't have to make an appointment. I don't have to make phone calls. And they have every record in the world at their fingertips,'' he said.

Having weighed the options, Mr. Blake plans to go in June to NIH. He will undergo tests and imaging scans and within a day or two of his arrival, he will know. If surgery is needed, he will have it at NIH.