QUESTIONS ANSWERED: EXPERT PRESENTS HIS ASSESSMENT OF THE CASE

Kenneth Zamkoff, M.D., is an energetic man of about fifty—about six feet tall—with a salt and pepper beard that is half way between full and a starter. He is direct, energetic and even loud. Only someone who was stone deaf would have a hard time hearing Dr. Zamkoff. He is now my oncologist, as the oncologist originally assigned to me at Baptist Hospital in Winston-Salem, North Carolina, Denise Levitan, is out on maternity leave.

I didn’t know what to make of him during our first meeting a month ago, but he made a much stronger impression during the meeting in October. Along the way, I had become aware of the fact that Dr. Zamkoff was a specialist in lymphoma and was specifically very knowledgeable about Mantle Cell B Lymphoma, my disease. When I first saw him in the examining room this time, he disappointed me with the news that he had never gotten my letter, that is the letter containing the questions that I presented in the last posting. He then heard me out as I put each question to him, and he provided the answers I was seeking.

First Question: Lymph Node

My first question had to do with the continued presence of the cancerous lymph node in my abdomen. What did this mean? The second bone marrow transplant had not eliminated the lymph node in my mesentery. Because it had not gotten rid of it, was this second bone marrow transplant a failure? “No,” Zamkoff answered, “the lymph node is smaller than it was, and it may be less active than it was or not active at all.”

So should we do something right away to find out about the activity level? “Should I have another PET Scan?” I asked. “Another PET Scan or a laparoscopic biopsy,” he answered. I wasn’t happy to hear the reference to laparoscopic surgery, which I had already tried, as reported in a Mind Check posting in the fall of 2007. The laparoscopic procedure, although short in duration, had come complete with its own memorable trauma. And so I pushed the idea of a PET Scan. Then he surprised me by turning the tables on me by confronting me with a couple of questions I was ill equipped to answer.

Already Tried Velcade

“And what is that going to tell us?” he asked. “How active it is.” I answered. “And if it is active, what are we going to do about it?” “I don’t know,” I responded. How could I answer such a question? “You’ve already tried Velcade, right?” he asked referring to the so-called wonder drug for relapsed lymphoma that had been administered late last year.

“Yes,” I responded, “and it didn’t do a thing.” “In fact, the node was larger after Velcade treatment than it was before,” he interjected while flipping through a sheaf of paper which must have been my medical records. “That’s the problem,” he responded. “We’re running out of options. I’m going to do some research and see what else we could try, but we’ve already done the obvious things.”

Go Home And Forget About It

He looked right at me. “My advice to you is that you go home and forget about it. My advice to you is that you go home and live your life.”

In other words, he was advising me not to think about the finger nail size thing inside me—the dangerous lymph node—but to get on with my life, that nothing was to be gained by worrying about it. However, just so I would not go home and become too complacent he risked contradicting himself by asserting, “ I can tell you this, it will come back.” Then to make sure I did not miss what he had said he repeated it. “Based on my experience with this disease, it will come back.”

Remission First Time

Any reason for hope then? “How much of a remission did you get from the first bone marrow transplant?” he asked. “Five years,” I responded. “Five years, okay,” he was almost shouting. “Now that is a reason for hope. Maybe you can get almost as much time out of this bone marrow transplant as the first one.”

And what about my knees? Could I or should I consider knee replacement surgery? “We can’t make that decision now,” he answered. ‘You’re not ready now. Let’s wait three months and see how you’re doing. If you’re doing okay, and you still think you want and need to do something about the knees, that will be the time to consult with an orthopedic surgeon.” Then he added for emphasis, “That will be your decision.”

That was my meeting in October with Kenneth Zamkoff, M.D., oncologist. What did I learn? Frankly, very little that I didn’t already know, but I heard it from an expert in my particular disease, and I heard it without hedging or cant. That gave me a lot to digest.

For an overview of the various writing projects I am involved with, please see the website http://www.sasaftwrites.com. My latest book Murdoch McLoon And His Windmill Boat is available from the website http://www.Xlibris.com.

Copyright © 2008 by Stephen Alan Saft

QUESTIONS FOR THE DOCTORS, AT LAST I'M POSTING TO MIND CHECK AGAIN

The best evidence of how I have been doing since my bone marrow transplant of July 2008 is how long it has taken me to post a new contribution to Mind Check. The bone marrow transplant at Baptist Hospital in Winston-Salem NC was July 8, and I have passed the three month anniversary. Look how unproductive I have been.

This bothers me. I have many writing projects pending, not just blog postings, and I hate being this inefficient. What is wrong with me? No new short poems. Minimal work on a new epic poem that I undertook to write before the bone marrow transplant. No progress on the editing of the galley proofs for the second book of poetry I committed to for this year. No activity on the projects in my archives. And no new posting for Mind Check.

Morning Motivation Then Dissipation

I have to admit that lately I’m seeing some improvements in the way I feel, particularly in the mornings, but I still don’t have the reserve of energy I was used to before I undertook the procedure. I wake in the morning, and for the first few minutes of the day I’m in the midst oif a frenzy of mental activity. I'm thinking of all the projects I could be working on, but then doubt shows its awful face. I'm wondering if I will have the motivation and the drive to plunge into these bigger challenges or if I am going to fall back on activities that are easier—like checking my email—but don’t give me the sense that I am moving my life forward?

After breakfast, the guessing game has sometimes transmuted into a confrontation with hard reality: No energy. I’m ready to climb back into bed. What happened to the energy I hoped I would have in those first few minutes after waking up? Where did it go? Did I eat the wrong combination of foods for breakfast or was it something I did the night before?

Afternoon Nap

Even if I do get something done in the morning, I can count on most afternoons being a wash out. I have lunch, and I’m ready for a nap. No need to climb into bed. Just sit me down in a chair, and I’ll soon be nodding off. I do have to acknowledge that feeling tired in the afternoon is not a phenomenon peculiar to the bone marrow transplant for me, but started happening before Harriet and I had made the move to Southwest Virginia and were still living in Arlington in Northern Virginia. Maybe it’s simply a byproduct of getting older.

At night, I usually experience a renewed spurt of energy, but it’s rare that I’m motivated to put that energy into writing anything. After a half hour of meditation using the practices of Eknath Easwaran of the Blue Mountain Center for Meditation, I’m ready to be entertained. Put me in front of the TV set and I’ll happily watch someone else’s creative work on a DVD. Lately, I have to admit, it has been hard to stay away from the TV news at night what with a national election campaign going on and with the country’s economy in virtual bankruptcy, the causes concealed by financial manipulators on Wall Street.


How Am I Walking

That’s an account of the ups and downs of my energy level during the course of a day, but what about the rest of me? What about all the other side effects that I brought home with me from the hospital? How, for example, am I walking these days? Better than when I first got home from the hospital, but outside of the house I still can’t do without a cane. I have a problem with my balance on uneven surfaces, and at night if no light illuminates the ground, I am probably going to fall whether I have a cane or not. I get disoriented if I can’t see the surface that I’m walking on. My knees are stiff, and sometimes they hurt. And they don’t seem to want to do what they are supposed to do during the walking process.

Then there’s the numbness in my fingers and my feet. In the morning when you’re getting dressed, try buttoning a shirt when your finger tips are numb. It’s not easy, and some buttons and button hole combinations are still impossible for me.

Hospital Testing Results

At this point I should reveal that about a week ago I had another series of tests at Baptist Hospital and a consultation with one of the oncologists. I came away from this session feeling disappointed. But first the good news. My blood counts for the key components of blood are in the normal range or rising and approaching normal.

Now the bad news. The CAT scan showed that the cancerous lymph node is still present. It’s smaller than it’s ever been since I first started dealing with Baptist Hospital over two years ago, and it may be the least active that it’s been. Only a PET scan would reveal activity, and I’m not sure when I’ll be allowed to have another PET scan. The point is that despite all that I’ve been through—all the chemo over a several month period including the awful BCNU or Carmustine just before the bone marrow transplant itself—the node is still with me.

The Questions

What does this mean? I’ve decided to put a series of questions to the bone marrow transplant team. I meet with them again on Oct. 20, and I would certainly appreciate having some answers by then. Here are my questions for the team:

1. What does the continued presence of the cancerous lymph node, albeit smaller in size, mean? Is this latest bone marrow transplant a failure because the node is still present? Have I wasted my time having a BMT? What?

2. How long before I may expect my lymphoma to affect any of my vital organs? Since the node is in the abdominal area, are the organs of that region the most likely candidates for attack? What would the likely treatment options be—radiation, chemotherapy, surgery?

3. Are my knees likely to improve on their own? If not, would it be advisable for me to have corrective knee surgery. I am not interested in going through another painful procedure like knee replacement if my long term prospects are not too promising. Why bother?

Let’s see how I do with these questions. I am prepared for a wide range of answers including “I don’t know.” Frankly, an honest “I don’t know” would be preferable to the kind of pronouncement we hear in most dramas about cancer victims. “ Well, Mr. Saft,” says the physician in his most earnest voice, “I’m sorry to tell you this, but you have just six months to live.”

Whatever they say, I will try to make the most of whatever time I have left. I don’t want to spend my time mired in regret and feeling sorry for myself. I still have a lot of work to do.

For an overview of my various writing projects I am involved with, please see the website http://www.sasaftwrites.com. My latest book Murdoch McLoon And His Windmill Boat is available from the website http://www.Xlibris.com.

Copyright © 2008 by Stephen Alan Saft