If you've been through cancer treatment, for yourself or with a loved one, you know the secrets. Like a combat veteran, you're a member of a club you never wanted to join. But just as many of us imagine we know what a shooting war is like from books or television, I thought I knew what this war would be like, imagined I had a good idea of what to what to expect - what the battles were like, the sounds, smells, stresses. I was wrong. I didn't know.
A few months after I met my friend, Will, his cancer (melanoma) progressed from stage III to stage IV. Nine months after his initial diagnosis and surgery and participation in a clinical trial, melanoma was found in his lungs. A systemic treatment called Interleukin II was recommended. It was rough - I stayed with him through the two weeks in-patient treatments - but he was strong and positive and he did brilliantly well. The cancer responded; and we had hope. In the world of cancer, hope is worth platinum. It's energizing; it's a thing of magic. It keeps you going, and it convinces you that the effort is not futile. Will's September 2009 scans looked good. But by January, the cancer was back and this time, had surfaced in his liver.
We scrambled for options. When you are talking about stage IV melanoma, you are not looking at the difference between good treatment choices and bad ones. You read the literature and begin thinking of a 10-20% response rate as "excellent." "Stable" disease is a victory. You don't go to your local oncologist and your local hospital, or even your local cancer center. You need a melanoma specialist and you may need to travel - repeatedly - across country for treatments that are available only at the National Institute of Health, MD Anderson in Texas, Memorial Sloan Kettering in New York. Clinical trials are mostly what is available to you, and that means negotiating the labyrinth of tests and qualifying criteria imposed by drug companies who don't want people to die on their trials - it makes the numbers look bad. While running genetic tests to see if he qualified for targeted treatments, and waiting for a clinical trial he might be able to get into to open up, Will got sick. The only option left was the brutal "biochemotherapy". Without it, his oncologist estimated, he had about three weeks left. So he entered the same hospital he'd been in the previous summer, and started treatment.
Such a different atmosphere this time. When Will did the Interleukin II lthe previous summer - just under a year before - there was optimism, and an expectation of success. He was not yet feeling sick. (Not feeling sick despite being sick - that's what doctors call your "performance status." The less the disease limits your regular activities, the higher your performance status. A bad one can keep you from potentially life-extending clinical trials. You'd better hope you perform well) When he entered the hospital for the biochemotherapy, he was on the same oncology floor, but it was very different this time: the nurses and doctors were aware his life was in danger, and no one harbored much hope this treatment would do anything other than stave off imminent death.
Biochemotherapy - it's a combination of three chemotherapies and two immune boosting therapies, and makes you about as sick as a human being can get without actually actively dying.
When the side effects hit, they brought in on call specialists - cardiologists, nephrologists - in the middle of the night; his own oncologist was consulted regularly almost every night by worried nurses. Everything telegraphed the obvious message: This is bad. Very bad.
My friend, Kevin, was spelling me at the hospital. I'd send him updated emails to keep him informed, make sure he knew what to expect when he arrived at the hospital each day.
Last night, Will got violently ill - I mean, food poisoning
quality vomiting. He then went into rigors. Two shots of morphine
and five heated blankets later and he's just now stopping the violent
shaking. He's also almost totally out of it from the morphine but that
is better than how he was before. He's pretty amazing, though. He
held it together well but God, this was not fun.
The next night's entry:
Just so you know what is going on. Let's see - agitation,
combativeness, panic, rapid heartbeat, rapid pulse, needed oxygen and
then an emergency EKG. All is okay, though, just "normal" side effect
(good god) of the treatment.
After cleaning him off once from the vomit, I cleaned him off a second
time from the drenching sweats. He's okay now and hopefully will go to
sleep.
But the cardio guy compared his ekg to the last one (three weeks ago)
and it's fine. He does need watched pretty carefully though. If he
breathes rapidly make sure he has his oxygen canula on.
I was aware that this treatment was controversial. Most of the people on the melanoma patients information page, my usual source of best advice, were less than enthusiastic about it. It had a few supporters, people who had benefited, they felt, significantly, from undergoing the brutal and toxic regimen. But most were skeptical. "It will make you incredibly sick, and won't really work", was the general message I was getting. But it was all his oncologist could offer us, and we couldn't wait any longer for better, less toxic options to open up. That's what we were told. Three weeks, the oncologist said. Without this treatment, three weeks. With it - maybe time to get into something better.
Having boarded this particular ship, albeit on an emergency basis, we were committed. It's a decision I regret, in retrospect, like many others, because it was made without being fully informed of the alternatives.
Will endured the treatment and survived, but it was obvious, he was not bouncing back this time the way he did from the Interleukin II. His heart, his lungs, his liver, all suffered the side effects. He was exhausted, carrying 40 pounds of fluid in his abdomen and legs, unable to eat or drink with much enthusiasm, and depressed. I watched as the quality of his life evaporated like a rain puddle in blazing sun. I didn't have any idea what to hope for - what did "success" even look like at this stage? What were we talking about ? A year more? Six months? Two? No one could say - nor could anyone tell us much about what that time might look like. It depended on too many variables, and in the end, Will still wanted to fight. He wanted a chance to get better, to feel better, to have time to pursue unrealized goals. Was hope a chimera?
Not necessarily. The odds were against him, but he was not yet a statistic. He would be, eventually - we all will - but until that time, it was impossible to say which category he'd end up in - long term responder or not. They existed, the people who survived years of stage IV melanoma, who did indeed have decent periods of good quality of time. He wanted a chance. I wanted him to have a chance. No one wanted him to suffer. But the treatments meant de facto suffering. The issue of palliative care, of hospice, was considered, but as long as there remained a chance that he could get better, Will, at 45, was willing to undergo the hell that treatment meant for a shot at time.
But it was indeed a hell. Along with the others who were helping provide care, I spent hours urging him to eat when he wasn't hungry, to drink when he wasn't thirsty, to walk when he was exhausted and in pain. The thought that I was torturing this man flashed through my mind more than once; I beat it down inch by inch. I'd drive home from the hospital (to shower and go to work before going back to the hospital) and scream in my car.
"I don't know what to do! My God, I don't know what to do....."
I didn't. It is, perhaps, the worst feeling in the world. If you are doing the best you can, and you feel assured of that, you have, at least, a peace of mind. But I didn't know, and I was, by then, afraid to look too closely for fear I'd find we were doing the wrong thing but that it was too late to turn back, to change course. It was tormenting, and it took a toll. I had to be positive for Will, he didn't have the luxury of doubt. No one could find the strength of mind and body and soul to go through what he went through and be torn by doubts at the same time.
More than one person voiced their doubts. "Is this worth it?" "Are you sure he is not just doing this because he thinks we want him to?" What could I say? No, I was not sure it was worth it, how could anyone possibly answer that? But yes, I was sure he wanted to live. He talked a lot about dying, about how "one day" he would be glad to get to heaven where neither his disability (Will was diagnosed as mildly developmentally disabled) nor his cancer could hurt him anymore. But as alluring as heaven might sound, he also wanted to learn to use computers better, to volunteer at Access Living, the progressive organization for persons with disabilities he'd grown to love,, to find a partner in a relationship, to do some traveling. He wanted time. He'd just gotten free of the oppressive and degrading organization he'd been part of for 22 years, ; he wanted to exercise the freedom that afforded him. He was doing this for himself, not for those of us who loved him; yes, I was sure of that.
There was something else, though, I thought, that was driving him. Will, at his core, was a warrior. He derived his energy, at least in part, from the fight, and he'd been so all his life. He'd fought for independence with a ferocity and a single-mindedness that was awe inspiring; now he was fighting for time with the same focus. To give up the fight would not be to depart in peace with an enhanced "quality of life", I feared - but would be a sinking into hopelessness, robbed of his driving force. He was not one who could go gently into the night, making the most of the time left. He needed to fight to be who he was.
But this fight was getting harder by the day and our weapons were damaged. What had worked in the past was no longer effective. Melanoma is an insidious and relentless enemy and the biochemotherapy battered his already weakened body. When he left the hospital, Will, who'd thought nothing of riding his bike five miles to and from work - or to a fitness center, who had been healthy and strong his entire life - could not take a step unassisted. He'd lost most of his muscle mass; the arms that had been built up from years of weight lifting and physical work could barely lift a tea cup. He did not recognize his body; was genuinely distressed at the changes, which he found appalling. He looked eight months pregnant from the fluid in his abdomen, could not fit his sandals on his feet from the edema there. His upper arms began to take on the look of a concentration camp refugee, so wasted and frail were they. He'd always told me how he was grateful he woke up every day feeling well. What could he be grateful for now?
I knew I needed to make sure he could find such things. From the time he left the hospital after the first round of biochemotherapy, I was determined to give him the best possible quality of life, every day. It wasn't self-sacrificial; it was what I wanted to do. It was the only possible thing to do, really - I loved him desperately by this time. It required no more thought or effort than putting my hands out to break a fall.
"Don't question the choices you've made in fighting this disease!," the fellow melanoma patients and caregivers from the online support group warned me. "It will drive you crazy and accomplish nothing. You do the best you can with the information you have, and that's all you can possibly do...."
Maybe they're right. But I thought I knew some things. Things like how to research doctors and treatments to find the "best" ones for a given illness. Or what I'd do, personally, if I were diagnosed with a life threatening illness. Now, I know, I don't know those things at all. All I know, in fact, is that I tried everything and could not save Will's life. All I know is I love him and I miss him, and hate what this disease did - to him, to everyone who loves him.
It's like a bomb going off, dealing with an illness like cancer. When the dust settles, regardless of the outcome, nothing is the same. You look around, and the landscape is only familiar enough to make you realize that everything has changed, to make you feel incredibly lonely for the way things used to be. Like the war veterans, you have flashbacks, you suffer PTSD, you find yourself unable to re-adjust to life as a civilian. No one told me about any of this - or if they did, I didn't listen....I didn't know. I know now.