Early in the new millennium, I had battled colon cancer twice. The disease knocked me down hard. This was out of bounds, I thought. I already had my disease. I was indemnified against getting hit by another. Right? Wrong. The word cancer touched off a maelstrom that sucked the entire family under. When cancer comes calling, you find out what you are made of. By the time I had my second bout with cancer, I got my answer, and it was not pretty.
My kids did a lot of growing up in the next year. They learned that life is not fair. The three of them saw me morph into an angry man they did not know, and they figured out how to deal with it. Each of them learned about stress and emotional pain on a whole new level. Meredith and I followed our self-imposed guidelines and sat the kids down, quietly using the C-word. Gabe spoke up first, asking if I was going to die, quickly followed by a request for clarification about the disposition of holiday presents. Clearly, Gabe’s priorities were in order.
In the first case, the surgeon went in through my lower back, removing the coccyx, or tailbone. The post-op pain was searing. The second time, the cancer was still harder to reach. The surgeon warned me he might have to do a temporary ileostomy, which would mean I would need the bag. The bag. Great. The prospect of that worried me more than the cancer itself. I knew trouble lay in wait.
The surgery lasted almost seven hours. I awoke with a port on my arm to deliver morphine and a bag on my belly. Don’t worry, I was told, the bag was temporary. The procedure would probably be reversed in three or four months. Long ago, MS had taught me to count on nothing. I knew not to trust the word probably. All I could do was desperately hope the arrangement really was temporary and just grit my teeth and live with the indignity.
When I returned home from the hospital, the autumn chill moved indoors, my anger arriving under the cover of my darkness. This was not supposed to happen. Did I mention that life is unfair? I could not get used to that simple fact. I was pissed and acting half my age. The kids bore the brunt of my anger. I thought they would rejoice that I was home again. Instead they shrank in horror. I moved around the house with a trail of black smoke behind me.
My fangs were bared, and they were sharp. Do your homework! Turn off the music! I barked. Clean up that mess! Don’t leave it for your mother and me.
Cohabitating with my MS had seemed simple by comparison. Now the children were walking on eggshells, never sure of what might touch off the next explosion. I was trapped in my own despair.
Finally, Meredith made it plain she had seen enough. “You are becoming a monster,” she bluntly told me. “These are your children.” I just sat and stared, seeming oblivious but taking her seriously. My bad mood had built up a lot of inertia, however, and change came slowly.
When the ileostomy finally was reversed, the bottom of my colon kept closing, and the painful complications got worse. I was impossible to be around. “Open your eyes, Richard,” my wife pleaded. “Don’t do this to your children. You are not in this alone.”
Memories from this period carry pure pain. It was as if my children were the real victims of my cancer. I thought my love for them had no borders, but I was hurting them every day. Meredith’s pleas to me finally hit home. I had to do something, anything to change course.
I sat each of the kids down individually and told them I wanted to write about this awful situation. I wanted them to see my mea culpa in black and white, no holds barred. I told the kids they would have to be honest with me, and they could say anything. My editor at The New York Times had agreed to the piece and told me it would run as a Cases column in the Science section.
Ben, you are thirteen, I said quietly. You can tell me the truth. Have I been hard to live with? Ben smiled suspiciously and sat, just staring at me. “Do you really want the truth?” he asked. My blood ran cold as I wondered what he was going to throw at me.
The floodgates opened. “You were really mean,” he began, pleased to unload and picking up steam. “I wanted to scream in your face and kick you. But Mom told me to cut you some slack.”
These were sobering statements. Gabe, who was then eleven, added his two painful cents when it was his turn. “It sounded like you really hate us,” he said. A flood of emotions was cascading in. I knew I had to go through this exercise, but it hurt.
Lily was still little, not quite ten. She simply wagged her finger in silent disapproval. Their pain had been dumped at my feet. What had I done? Even formulating words to apologize caused me anguish. An improved domestic landscape would require more than words anyway. The epiphany hit hard. I had been so self-absorbed, and there was a lot more to think about than me.
I had lost the ability to see my family through my veil of self-absorption and pain. I did not realize what I was doing because I was the center of my universe. What I missed was a simple fact. Patients do not lie alone in their hospital beds. Our families are next to us, whether or not we see them.
On the day of my endless surgery, Ben had played in a violin recital at school. His music teacher later told me she had rarely heard so much raw emotion come out of a child’s violin.
It is easy for us parents to reassure ourselves that the kids are used to bumps in the road and have their acts together. Dream on.
Once I had beaten back the beast, MS took its turn again. Multiple sclerosis moves in when the body is most vulnerable. Various appendages began to fail with unnerving frequency. I subjected myself to one drug regimen after another in the hope of reversing or at least stemming the steady slippage of my physical abilities.
In previous years, one of my neurologists recommended taking three injections of interferon every week. I then graduated to daily injections of a different drug. By my count, I plunged needles into various fleshy spots on my body nearly one thousand times. I never complained, but I also never got used to the exercise. The interferon and other drugs did nothing to stop the progress of the illness. They were not even intended to do battle with my brand of multiple sclerosis, secondary progressive MS, but the neurologist thought they were worth trying.
There are no treatments for SPMS. Neurologists often treat people who have this form of the disease with drugs intended for the more common relapsing remitting disease to see if the pharmaceuticals help. That is called a Hail Mary pass. In my case, the drugs for RRMS never worked.
I have to wonder if physicians can hit the broad side of a barn at point-blank range when firing at MS. And really, what are they shooting at, anyway? Even in the body of one patient, they may be aiming at limbs or lesions on the brain or perhaps an optic nerve or two. My own body has seen the best and brightest take aim and fire. We need to believe in and trust our physicians. Hope cannot thrive without trust. These men and women are devoted to finding cause and cure. I know that. They are good people. It is not fair to label them the gang that can’t shoot straight, but that doesn’t make it any easier to accept that nothing was working.
After my battle with cancer I was impatient, ready to try any treatment, no matter the side effects. I decided to change neurologists. Mine were friends but too conservative for me. I wanted action.
I had a long relationship with the big MS guy at Harvard. In 2009, I asked him to take me on as a patient and think outside the box. Chemotherapy was his recommendation. Oy. Doctors cannot be faulted for following a patient’s wishes and throwing everything they can at a disease. Sometimes that helps. Many times it does not. Nothing ventured, nothing gained, though there is certainly a point when the treatment feels as bad as the illness.
My experiment with chemo was devastating. Each month, I walked into the cancer infusion center at a major New York medical center. Every treatment day brought the same drill. An IV of Benadryl came first, intended to ward off the harsh reactions to the chemo that would show up anyway. The antihistamine did make me pleasantly sleepy, but then the real poisoning began. After about an hour on the Cytoxan, a powerful form of chemo used to battle various cancers by slowing or stopping cell growth, my body started shaking violently. A few blankets later, I still was freezing. This went on month after month.
Every time, I just wanted to get up and sprint out of there, as if that would have been possible. Cancer patients, hairless and gaunt, sick and dying, surrounded me. I could not stop looking at them. They were cheerful and warm, smiling at me as if I were one of them. Most seemed upbeat. I wondered if they were optimistic.
While I was undergoing chemo, so was my friend and former colleague Sandor Polster. Sandy had written news copy for both Walter Cronkite and Tom Brokaw for years, but by that point he was writing the last chapter of his life. Sandy was dying of gastric cancer and knew he was running out of time. Polster’s chemo sessions had been rugged. Mine were nothing in comparison.
We had lunch in late 2012, and he seemed upbeat, though hardly optimistic. I asked if he had hope. “Yes,” he quickly answered. “I hope I outlive my cell phone contract.” That was vintage Polster. I kept probing.
What keeps you going? I asked. “I want to get to talk to my grandson. That is my incentive to live. He is one. I do not expect to be alive to have a conversation in two years.” Staying alive for that boy sounds like hope, I suggested. “I am going to live life. I guess that’s hope, maybe with a lowercase h.” He added that he wanted his last meal to be an all-you-can-eat buffet. Sandy exited laughing.
After each round of chemo, I rushed home to drink liters of water, hoping to avoid a severe bladder infection. Violent mood swings followed. I would laugh maniacally, only to find myself weeping a few hours later. The reactions were hell. This got old fast. One day when the weather was warm, Meredith and I sat outside, and I found myself explaining through my tears that, really, nothing was wrong.
Actually, chemo was wrong. Big-time. Meredith begged me to get off the poison, which eventually I did. My neurologist was disappointed I gave up on the chemo. A patient cannot be weak-kneed if there is any hope of beating a disease like mine. I felt bad about pulling the plug. But not too bad. The Cytoxan had turned my hair white, but it did not turn around my illness.
My war was with my body, but many battles are fought north of the neck. Had I hoped the drug would make a difference? I suppose. But my expectation level had moved south to near zero. Hope was not an active verb in my life. Hope and expectation have to at least be proportional. They do not need to match perfectly, but they must at least exist in the same space.
In early 2013, I decided I had reached my limit with conventional treatment. There would be no medical miracle. I had endured almost forty years of fruitless treatments, a few so harsh they seemed as debilitating as the MS. I liked my doctors, but I wanted out. I was weary of listening to the predictable expressions of encouragement and hope from the doctors. “Maybe” and “Let’s try” are up there with “Someday” and “In the future.” “We can hope” is also a favorite. Please.
I was running in place and tired of pretending we were getting somewhere. That was why I told my New York neurologist I was done. I was taking my football and heading home. The doctor understood my frustration. There were no hard feelings. She knew my decision to abandon conventional care was not personal. I just needed space. As I left her office, I told her that when she found a cure to please let me know. She smiled.
I had resigned my commission in the MS militia. I had not been without a neurologist in the four decades since my diagnosis. I felt slightly vulnerable, unprotected, even though I knew no doctor could shield me from the inevitable decline I was facing. But I was free. No more fruitless forays into territory captured by the neurological enemy. Relief rose inside me. I now was walking the wire with no net, but I felt unburdened, at least for the moment.
I had been bluntly warned by my first neurologist in 1973 that there would be little he could do. All these years later, that tough truth hit me hard. He had dismissed hope in the first five minutes of my new relationship with MS. That raises a tricky question. Are such blunt assessments a sensible plan for helping anyone deal with a life-altering disease? There is nothing positive to be said for dispensing rose-colored fiction. But maybe leaving room for hope could pay off down the line. Who can second-guess tomorrow? Medicine has been on the march for years, developing new drugs and devices. No one, doctor or patient, should discount the future.
Over the years, family and friends talked to me about hope. Hope seemed to be more of a comfort station for them than for me. Hope was not my thing. I saw hope as a hiding place for losers. Winners, I felt, just kept moving forward on their own steam. Little about my attitude with regard to hope had changed. I still was determined to erase hope from my emotional vocabulary.
Meredith thought my move away from regular care a bit impetuous, but basically she got it. I thought going it alone felt fine. But once I let go of any lingering notion that something might fall out of the sky and one day make me better, I didn’t feel fine at all. I began to focus entirely on my miseries. I knew I was stuck in a self-indulgent rut. I recognized my emotional cycles, but that did not help me escape them. I was pretty moody.
“You are an angry person, Richard,” Meredith told me one day as I sat sulking in the wake of one of my angry explosions. We had been hanging out in our family room, waiting for the evening news to start, when I dropped a coaster on the floor. I had an instant meltdown as my fumbling fingers failed to pick it up. My fits of anger were coming too frequently, and Meredith was growing tired of the show. Meredith is liable to say anything on television, and she certainly speaks her mind at home.
Strong voices at home demand to be heard. The message was received but not yet processed. Criticisms can be pleas for change and gain momentum with repeated soundings. The cumulative effect is only seen over time. Change can take place quietly and without fanfare. A state of being can be silently altered, even without acknowledgment from the party in question.