People say that you get what you wish for. Maybe they're right. Ten years ago I wished with all my heart that I would be here now, at this moment. And I am, alive and well. It could easily have been otherwise.
In 1990, after having felt tired and listless for months, I finally went to see my doctor. His verdict was not good. I had non-Hodgkin's lymphoma, a form of cancer that attacks the body's immune system. Now, as cancers go, this one has at least some good news to go with it. This type of cancer can lie dormant for long periods of time, causing little or no problem for its unwilling host, as I like to think of myself. On the other hand, it is also notoriously hard to treat, returning again and again until finally it overwhelms the body's immune defenses. Since that time, I have had to work to build a life that includes this condition, this unwelcome guest.
Below are some of my recent thoughts about living with cancer. They are "ditties", or small fragments of writing, like the bricks in a sidewalk. Maybe they will eventually turn into a path. Who knows? Perhaps this journey is the path.
The True Value Of Traveling Companions
For days after I heard my diagnosis I kept thinking, "This can't be real," and "Cancer happens to somebody else, not me," and "Where do I go from here?" I was shaken so badly that I could not concentrate or sleep, and I was moody and irritable. My doctor, John Parker, advised me to take a few days off work to consider my options, but I could not see any choices. I could not even plan what to do the next day. This is the time when new cancer patients are most vulnerable to losing sight of their life paths, precisely because there are no fixed and reasonable plans available. "Start as you mean to continue" my father used to say. He was an ex-navy man and believed in always setting a course before leaving port. So, there I was, a stranded traveler sitting in the harbor, with no map and no compass. Some sailor!
It was my curiosity that finally saved me. I wondered if there were any other people who had arrived to this bewildering place, and as it turned out, there were several people living in my area who had not only been diagnosed with NHL, but had undergone such ominous sounding treatment as bone marrow transplantation. The first person I called on the list was Warren Piver, a man who had struggled with NHL for several years and who knew well what I was facing. He and his wife came over to my home for coffee. His Midwestern speech, easy and deliberate, was by itself a comfort to my ears. Inside five minutes I knew that this simple conversation would lead me to places where things would get better. His wife Laura is a nurse and had expert, up-to-date information about all the recent treatment protocols available nationally. We talked for an entire evening and gradually I could feel myself letting go of the steely tension that comes with emotional strain and overload. His message was heartwarming, and he spoke in vivid and colorful detail about his own experiences with an autologous bone marrow transplant. For weeks after this meeting I would call him with a question, or just to touch base. Each time we chatted I felt better, and more connected and hopeful.
Soon after my diagnosis, I traveled to the famous Dana Farber Cancer Institute in Boston to consult with Dr. George Canellos, a renowned expert in the treatment of non-Hodgkin's lymphoma. I had been diagnosed a few months earlier and I was hoping to enter a novel, but risky treatment program. As you might expect, I was pretty nervous about what he would say, and I did not know if I would qualify for the new treatment protocol. I was badly in need of a "hope transfusion".
Tom, an old friend of mine, had offered to come with me for the clinic visit. He sat with me in the waiting room, and was there when the famous Dr. Canellos appeared down the hallway. He was warm and engaging, with a firm handshake and courtly manner, and I began to feel the first spark of hopefulness. After a complete physical examination and review of my records, Dr. Canellos said, "I think you should know that we do not do salvage therapy here," and then proceeded to explain the work he and his team were doing and details of the bone marrow transplant protocol. I can't remember much more of what was said because I stopped hearing him after he uttered that dreadful first sentence. "...we do not do salvage therapy here..."
After the clinic visit, Tom suggested we go get a beer. We found a little Irish bar and ordered drinks.
"God almighty, he doesn't mince words does he!" I blurted out as soon as we sat down. "Why did I waste my time coming all this way only to hear they don't want me in the protocol?"
I was pretty worked up, and ready to pour my heart out.
"What are you saying," Tom said. "Didn't you hear him?"
I stared at my friend and wondered how he could have so utterly missed Dr. Canellos' main point.
"Yes, I heard him pretty well Tom. I'm out. I'm not a candidate because I'm a damned salvage case!"
Tom grinned then. "Your ear-lids must have closed buddy," he said. "Dr. Canellos told you that you fit the protocol, not that you were a salvage case. He told you they didn't take salvage cases to reassure you that only patients with a good prognosis were being taken."
I was stunned.
"You made the grade," Tom said. "You got into Harvard!"
With that he raised his glass and offered a toast to all around us, "To the latest admission to Harvard University Medical School!"
I felt enormously relieved, embarrassed and just a little stupid, but that day I learned a lesson about listening with both ears wide open, and the value of having a good friend always close by.
I am Type A all the way. Always on time, deadline focused, impatient, and I tend to "overdo" most life events. So, as I was preparing for the bone marrow transplant procedure early in 1991, I was exercising twice a day. Though once would have been quite sufficient, I went to the gym at 8am, and then to the pool for laps at lunchtime. I got into a routine and looked forward to these workouts, especially the swimming hour.
One day I arrived to the pool hall and found it deserted. I hesitated, but then sat down at the pool's edge ready to slide in feet first. I heard footfalls coming from behind and a voice called out, "Sorry sir, we're closed today to work on the filters, we don't have any lifeguards." I turned, my face scrunched up in disappointment and confusion. "But I really need to swim today, I've got a program going and need to keep the rhythm."
With my type A personality, I nearly resorted to pleading.
"Can't I just spend 20 minutes?"
The stranger looked to be about 30 years old, with the slim muscular build of a long-time swimmer. He was the assistant swim coach. I am usually a pretty good judge of character and I instantly felt an easy rapport with this man, which partially explains my next statement. "You see, I'm getting ready to have a bone marrow transplant for lymphoma. I'm sort of "training" for it, if you see what I mean." His expression changed and he held out his hand in greeting and sat down beside me at the pool's edge.
"I'm sorry to hear that. I certainly understand a bit how you feel," he said. "Three years ago I had chemo for testicular cancer. Beat it I'm glad to say. Have a clean bill of health for the past two years."
Cancer strikes everybody in one way or another. Who would have believed that this man's image of peak physical fitness could ever have been the setting for a cancer battle? We talked for a few minutes more about what was happening to me, and how he had coped with his diagnosis at such an early age. We agreed that staying physically fit was a strong antidote to the stresses of cancer therapy. When I started for the locker room, he offered to act as the lifeguard so I could swim for a few minutes. I was relieved and grateful, accepting his offer at once. "Better still," he added, "why don't you guard me and I'll guard you. That way we can both swim."
This brief contact seems to me to be a metaphor for everything anyone could ever hope for in life, especially while battling cancer. Swimming by yourself is not a good idea. As I look back, that twenty-minute swim charged me with a renewed energy and vitality I hadn't felt before. Maybe his life experience boded well for my own, who knows? But I honestly believe it was because I knew I was not alone; there is a lifeguard for everyone.
Read Your Roadmap
Nobody can predict the future, and I know that when it comes to dealing with an illness like cancer, this is exactly what many patients try to do. They say to themselves, "This thing is going to get the better of me, I just know it," or, "I'll be lucky if I'm here this time next year." It's understandable to feel this way when you're staring at the very real possibility of death. In the beginning, when my mind started wandering down this path, it wasn't long before I was in a cold sweat and a cool funk.
For some people, predicting the worst may work because they are sure to be "pleasantly surprised" when things turn out better than expected. For cancer patients, this kind of thinking does not work. We need every ounce of optimism to keep us going.
I had a bone marrow transplant over the course of twenty-eight days, and it was then that I learned just how important optimism is. During that month, I got to know a research oncologist called Lee Nadler. Dr. Nadler is an expert in autologous bone marrow transplant technique, and had seen literally hundreds of them. He is a garrulous man, and always willing to talk to his patients and explain their treatments. Every morning, after rounds were over, he would come to my room and talk with me about what was happening in my treatment. He would say something like, "Well Brian, today you are going to feel crappy because your white cell counts are so low. You'll probably feel like that for the next four or five days. Then you'll come back to your normal self."
He was always heavily gowned and masked to protect me from infection, but I remember how his eyes twinkled above the surgical mask as he talked. And though sometimes he was giving me unhappy news, his eyes always added a counterpoint of upbeat optimism. For my part, instead of simply hearing a long-winded recitation of how bad I was going to feel, I chose to interpret what he was doing as giving me directions in a place where I was unfamiliar. It was as if he were giving me a road map by which to plan my journey. Best of all, without exception, he was usually right on in his predictions.
Some days later I asked him about his methods and he said that he believed patients liked to be given "medical updates and forecasts," and that he enjoyed the chance to explain how things were progressing. It was clear that these little chats were delivered with care and sympathy, and were always given in an upbeat and optimistic style. Being informed of what the future may hold can be very helpful, if done correctly. If information is delivered consistently through the treatment, without half truths from the doctor, or automatic pessimism from the patient, then information can be enormously comforting.
Capturing and Keeping Optimism
Before my treatment began, I was a six foot tall, fairly athletic man who weighed 200 pounds. After leaving Dana Farber following my transplant I weighed in at just over 140 pounds, and looked like a skeleton, with pale gray skin, deeply sunken features and a harsh croaky voice. My appearance changed so much that my friends hardly knew me. One of my attending physicians, Dr. Arnold Freedman, was giving me my discharge check-up and briefing me on how to care for myself during the next few weeks at home.
Dr. Freedman was the kind of doctor who gave you the feeling that he was talking with you and not "at" you. His care was straightforward, efficient, but never cursory or abrupt. I noticed that he had the habit of looking straight at me when he talked, no matter how painful or awful the conversation was. He was always "connected" to you.
Just before we parted company that day he looked me in the eye and said, "I can't promise you anything, but I wish you at least a 20 year remission". With that we shook hands, he patted my shoulder, and I left.
Looking back, that was a pivotal moment for me because he had introduced the possibility, with no promises or assurances, that my life would go on. I embraced the offer and made it my first "new-life" goal, at least 20 years, and after that, who knows? Hope is sometimes hard to grasp, but it often can be sparked by remarks like Dr. Freedman's.
Notice, I say "possibility" and not "probability". They are similar, but by no means the same. Possibilities are boundless and arise from somewhere deep within ourselves. Probabilities are simply man-made abstractions used to make educated guesses and cannot compare to their hope-filled cousins.
I've thought about this a lot in the past few years, and come to the conclusion that hope is a state of mind that doesn't need to be bound to reality alone. For some of us, this kind of thinking is a necessity. Remember that old saying: You gotta' crack an egg to make an omelette? Well I'm beginning to understand that what you do after, with the broken eggshells, is just as important.