"Now I’m not saying you have cancer…." This was the first time I’d heard the dread word applied to me. My stomach rolled over as I waited for John Tran, my young, earnest primary care physician to finish the sentence. "But I’m referring you to a hematology/oncology team to determine the reason for your high blood protein. You should hear from them within two weeks."

I walked out of the office, stunned, and into the waiting room where my wife Laurie was waiting for me. She was as shocked as I had been. We both had hundreds of questions, but we knew it would be weeks before they were answered. In the meantime we tried to put as favorable a light on the situation as possible. "Well, obviously," I said to Laurie, "if they were really concerned about cancer, I’d be in that specialist’s office tomorrow. It’s probably only a blood anomaly."

Cancer was the farthest thing from my mind when I first met with Dr. Tran. I had had a lingering cough and congested chest for the past several months. The usual antibiotics hadn’t helped, and chest x-rays ruled out bronchitis. It was only after a series of blood and urine tests that the high blood protein reared its head.

To weeks later, weeks that seemed like months, Laurie and I found ourselves in the office of Shane Shambaugh of the Bakersfield, California Comprehensive Blood and Cancer (that dreaded word again) Center. Shambaugh, an attractive man, young enough to be my son, explained patiently, "High blood protein can be a symptom of myeloma, a bone cancer; lymphoma, a cancer of the lymph system; or it may be simply a benign condition, one that we’ll watch for a while (the words Waldenstrom’s macroglobulinemia were never mentioned).

To my eager questions about treatments and prognoses, he responded, "Let’s just hope that it’s the benign alternative. But the first thing I want to do is x-ray you from the top of your head to the bottom of your feet to see if it’s multiple myeloma."

Within minutes I was on an x-ray table for a series of 25-30 pictures. I remember my spirits were high as I joked with the x-ray technician. If I had been aware of the high mortality rate and the short survival period associated with myeloma, I would not have been so cocky. "What next?" I asked after I left the x-ray room. "We’ve got you scheduled for a bone marrow biopsy in a week," was the response.

I had heard of that procedure and was not eager to have a hollow needle plunged through a hip or pelvic bone to withdraw a marrow sample, so I was prepared for the worst. Actually the whole procedure took less than a couple of minutes and was little more painful than a shot in the butt. And the good news was that my x-rays were clear; it was not myeloma, but two possibilities remained: an unexplainable but not serious high blood protein or lymphoma, cancer of the lymph system.

A week later we were back in Shambaugh’s office. The diagnosis was not good. It was lymphoma which had invaded the bone marrow. It was then that I got my introduction to

Coping with Cancer, Ben Rude Page 2

lymphoma. It is not a single cancer but a family of several types. A common form is Hodgkin’s disease, more common among younger people and very curable. All the others are termed non-Hodgkins and are classified as low grade, intermediate grade, and high grade (recently reclassified indolent and aggressive). The aggressive forms are curable about 60 percent of the time, fatal the other 40 percent.

Low grade (indolent) progresses slowly, is controllable by chemotherapy, but relapses inevitably following remissions. The life expectancy is 5 to 15 years. Laurie and I left the office somewhat dazed. We didn't know whether to hope for a 60 percent chance of cure, coupled with a 40 percent chance of failure and death within a year or so, or low grade, which offered a certainty of a few more good years.

A lymph node biopsy would tell for certain, and we were told to wait for a call from the surgeon’s office for an appointment. After several days of agonizing waiting, I had had it with the cavalier treatment I was getting, and I suddenly was transformed from a passive, "doctor knows best" patient to an aggressive advocate for my own care. I called the oncologist’s office, demanded an immediate appointment for the biopsy, and also demanded that other necessary tests be done immediately.

The squeaky wheel got the grease. The next day I had the lymph node biopsy, the following day a CT scan, and on the third day an appointment with Shambaugh for the diagnosis: It was low-grade lymphoma.

It was during the one-hour’s drive home that our comfortable, complacent world began to reel. Life to us had seemed eternal. Death was merely an abstraction that approached reality at the passing of our parents or occasional close friend and then receded into abstraction again. Now it was real. I had been given a death sentence. My remaining time on earth with my wife, grown children and friends could be as short as five years.

Driving home, I didn’t know what to say. "Well," I finally remarked, "it could be worse." "How?" responded Laurie, who was usually so optimistic and cheerful. I was stuck for an answer. After a few minutes, Laurie said, "Until today, we have looked at our life together as never-ending. Now we know it will end, and sooner than we would like. We have a choice: We can make the rest of our lives miserable, or we can refuse to let this cancer affect our happiness. It is up to us.

That was in August, 1996. Some months later we discovered the Waldenstrom’s Support Group, precursor to IWMF. At the conference in April, 1997, I decided to run for vice president of the then-forming IWMF.

Helping others to deal with this disease seemed to me to be an effective form of therapy for myself, and it has been. Having spent my entire adult life in education, I know well the rewards of serving others, but I can honestly say that I have never had more satisfaction out of life than I have since then. And ironically, it has given us, who had always loved life, an even greater appreciation of each day.