Sunday, February 24, 2002

Despite prognosis, he's determined to see another year

Marge Sherman Eagle-Tribune Health Writer

Ric Blake's journey with terminal illness took a different turn in recent weeks, one that he was unprepared to face.

He learned the thyroid cancer percolating in his neck for six years has spread to two distant areas -- his right hip and right shoulder.

Even though there was some encouraging news, too, that the experimental chemotherapy and radiation treatment he underwent last summer shrank the tumors in his neck by half, the pervasive feeling as he ended his 12-day round of testing at the National Institutes of Health in Bethesda, Md., was one of sadness.

"I felt like this is a path I don't want to be on. Not yet. You know how you're never ready? I'm not ready,'' he said.

The moment of truth came in a darkened nuclear scan screening room where Blake and his medical team sat peering at each image from the latest round of scans. They carefully examined and discussed every MRI, CT, PET scan, bone scan, and X-ray. The conclusive evidence lit up before them on the screen showed two small areas of growth, about one-half inch in size, in the hip and shoulder bones. The cells of Blake's thyroid cancer have traveled through the bloodstream and spread beyond Blake's neck for the first time.

A somber, heavy air fell on the room as the medical team accepted the magnitude of the diagnosis.

"It was hard. It was bad news and there were long faces,'' said Blake.

Blake's beloved physician, Dr. Nicholas J. Sarlis, sat with his head in hand, the color rising in his face. Dr. James Reynolds, nuclear medicine specialist, looked equally intent. Blake studied the doctors' reactions and understood the seriousness of the situation.

"Fortunately for them, I'm not one of these patients who disintegrates. Just because I understand and I accept it, doesn't mean that I like it,'' said Blake.

There was precious little for Blake to like in the latest round of tests. The bad news that his disease has metastasized, or spread, meant he would need to consider further treatment.

"Unfortunately, the existence of bone mets was unexpected, both to him and to us, and that changes the prognosis dramatically,'' said Sarlis, a research endocrinologist.

Patients who have widespread metastatic disease have an overall mortality rate of 60 percent in five years, he explained. For Blake, 57, the picture is even more guarded because the new cancer seems to have grown rapidly.

"In Ric's case, I would give him an even higher percentage because he has a very aggressive sub-type of cancer and these were lesions (in the bones) that did not exist in the summer,'' he said.

From now on, Sarlis will monitor Blake ever more closely. He and Blake's primary care physician in Nashua, N.H., Dr. Donald McDonah will be on the lookout for any changes. The pace of Blake's visits and testing at NIH will be stepped up to every three months.

Ironically, even at this late stage of disease, Blake continues to look healthy. His hair has grown back fully since last summer's chemotherapy. He regained 10 of the 38 pounds he lost back in August, but he is having trouble budging the scale upwards from 215. There are signs, though, that all is not well. His raspy voice takes a bit longer to rev up these mornings. And his energy level is fairly low. He has a few good hours at midday, usually spent at his computer, but by later afternoon he is tired.

Blake has become an avid student of his disease and how it affects his body. For reasons his own doctors do not fully understand, he has been able to identify the exact areas of his cancer's growth months before it ever shows up on nuclear or radiology tests. He had hip pain and shoulder pain long before they showed up on scan images. He felt changes in his neck, too, as the cancer grew.

When the medical team finished its diagnostic session, Blake and his doctor faced another daunting task. They placed a conference call to Blake's wife, Diane, waiting in her office at HomeHealth VNA in Lawrence to hear her husband's diagnosis and treatment plan. He had hip pain and shoulder pain long before they showed up on scan images. He felt changes in his neck, too, as the cancer grew.

The first words from Sarlis were positive. The exciting news, he said, was that Blake's neck tumors had shrunk by 50 percent to 60 percent from the experimental one-two punch of radiation and the chemotherapy agent Taxol he underwent last summer. Blake is one of but eight thyroid cancer patients worldwide to have tried the combination, and the results look very promising.

For Blake, the experimental treatment appears to have "stunned'' the cancer in his neck, perhaps permanently.

Now that the cancer in his neck is seemingly under control, doctors need to consider how to handle the metastases that are growing far from the original site. What will stop or eliminate the cancer that has spread to his bones?

Sarlis outlined five treatment options from most highly recommended to the least. First, Blake should try a round of radioactive iodine, recognized as the single best agent in treating thyroid cancer. In Blake's case, this is an iffy proposal, since the treatment failed the last time he tried it, in June 2000. Radioactive iodine therapy, or RAI 131, is a method of killing cancer by having patients starve their body of iodine, then swallow a pill of radioactive material that is absorbed by iodine-starved cancer cells and kills them with its toxicity. Sarlis believes that the new cancer sites in Blake's bones may be good candidates for the radioactive iodine.

If radioactive iodine fails, the next option is external beam radiation pointed at the few metastatic cancer sites.

The third option is surgical removal of the cancer in the hip and shoulder by shaving or removing parts of the bone that are diseased. Listening on her end, Diane Blake began to purse her lips and shake her head "No'' upon hearing the surgical options and what lay beyond.

Sarlis offered the last two options with caveats. Traditional chemotherapy is a treatment with unproven success and difficult side effects, he said. As a last resort, he held out the option of a full-blown and highly experimental Phase One clinical trial at NIH, one that would require that he stay at NIH or commute weekly for therapy and tests.

When Sarlis finished, Blake's head was spinning. option of a full-blown and highly experimental Phase One clinical trial at NIH, one that would require that he stay at NIH or commute weekly for therapy and tests.

"I'm thinking all of the things that could be on that path I don't want to go down... radiation, surgery, more mets and more mets. And, when are the tumors in my neck going to grow into the trachea? You know, all of those things,'' said Blake.

He had the niggling concern that, should Sarlis prove wrong about his neck cancer being under control, there are no more options. They have already used the "big guns" of radiation.

Blake was swept with emotion. He was upset that his wife was 500 miles away, hearing such disturbing news by telephone. The patient who one moment was furiously jotting notes on a legal pad suddenly lay down his pen and stopped. Tears rolled down his cheeks.

His first impulse was the fight or flight response. He wanted to run away. And he did.

"Lab rat abandons the lab! I bailed out,'' he said.

He walked out of the NIH clinical center and headed into Bethesda, to have dinner and a drink alone.

"I just needed to be by myself. There are times when you just can't stand being there anymore,'' he said. "It's just getting it out of your system; then you take a deep breath and you go back in and deal with today, rather than tomorrow.''

Blake returned home to Londonderry, N.H., the next day. He has spent his days since then regrouping, trying to figure out what is truly important in his life. He and his wife decided they will take a cruise to Bermuda in April to celebrate their upcoming 35th anniversary in September.

He termed his arrival home as a "journey of a thousand hurts.'' His skin reacted to topical dressing applied to his chest where doctors removed his port-a-catheter. He came home with a prescription for the wrong amount of thyroid medication. And perhaps even more troubling, he left NIH with an arsenal of drugs for the cancer and related pain, but with inadequate explanation of how and why they work.

To rectify the pain management dilemma, Diane Blake called upon a nurse consultant who had come to HomeHealth VNA to teach hospice nurses and other staff members about pain control for late-stage cancer patients. The Blakes invited the pain consultant to their home and, in one evening, Ric Blake got the best tutelage he's ever received on pain control. He learned that bone pain from cancer is far better treated with the drug trisalicylate than morphine. He now uses a combination for his pain: trisalicylate for bone pain, desipramine for neuropathic pain and MS Contin, a long-acting morphine tablet for general pain and tumors in his neck.

Blake agreed to return to NIH in March for the radioactive iodine treatment. Perhaps, he said, he will try the external beam radiation thereafter.

The big question on the horizon is when he will stop trying treatment options. When he will say enough is enough?

He thinks about it often. It was never more real to him than when he returned to his advanced cancer support group at Lowell General Hospital to hear that one of the members had just canceled his last round of treatment and planned to leave for Hawaii. Blake wonders if he will know when his time comes.

"One of the great shadows on the horizon for me is that I worry that I won't know when that time comes. What I learned from the Bill Moyers series (on death and dying on public television) is even smart, savvy patients can sometimes miss a window of opportunity,'' he said.

He has extracted a promise from Sarlis that the doctor will tell him when his options have run out.

"The desire is always to kill as much disease as possible and prolong one's life,'' said Sarlis.

Sometimes, the disease presents surprises that cannot be conquered by the best medicine, however. Sarlis stopped treatment in some of his patients, he said, when his hand was forced by the disease or severe complications.

"I cannot imagine the day when I will say, 'Enough is enough.' I try and close my eyes and say, 'What will I feel like that day? Will I be sick? Will I be in pain?' I don't know. It's unimaginable; it's as unimaginable as infinity or eternity. I have no feeling about it. I just can't imagine it, even though I may be there in six months.''

Sarlis told him that it is heroic to go through the experimental treatment.

"It's not heroic. It's greed, pure and simple,'' said Blake. "I'm greedy for life. I don't want to die. This is not hard to understand.''

And while the future looks uncertain for Blake, he has one certain expectation. He's going to see his garden grow for another season and put it to bed next fall.