Warning: Parts 1 and 2 are grim, but these are things worth writing.
Lately it seems like everyone has either gotten cancer or loves someone who’s got it. Disastrous, difficult, depressing, disempowering, disheartening, demotivating...a whole slew of D words, and terrifying to boot. Just do a search for the tag “cancer” on Daily Kos and brace yourself for a tsunami of stories, some inspirational, some sad, some resigned, all shot through with pain, resiliency, and hope.
I hate this illness. I’ve had cancer since 1994. I’ve joked that my cancer was first old enough to walk, then go to school, then drive, then vote, then drink, then graduate from college, and now it’s old enough to have baby cancers. Of course, there were times when my prognosis wasn’t a laughing matter and my expected expiration date was measured in weeks. Those were the times it was even more important to crack jokes, and we did. Gallows humor is liberating. Point is, cancer and I have been a pair for a long time, so long I tend to forget as the years fold into an amorphous “back then.”
I’ve lost a great many friends, sat beside my share of deathbeds and then some. To this day I remain in chemo. I’m not in remission — haven’t been in remission since 2000, but right now my cancer is under control. It’s chronic, although everything could go sizeways at any time and we’re all, my doctor included, astonished that it hasn’t. I go every week for an infusion, and for seven days out of every twenty-eight, I take additional chemo in pill form. It all has side effects, but I’ve learned to manage them. I haven’t had a really bad day in twenty-four years — I’ve had some desperate days where I felt lousy, where my life teetered on a fine edge, but I got through them, and the body forgets discomfort pretty quickly. That’s a gift of biology, that we don’t remember feeling awful. So I can say with confidence: twenty-four years, no really bad days.
I’ve learned a lot in those years, and want to pass on some of my lessons. It hits particularly hard to read the diaries of friends (or people I’ve come to think of as friends because I so enjoy their work) writing about their diagnoses, decisions, and despair. I haven’t got anything particularly wise to say but, for what it’s worth, here it is:
1. More is Better
Chemo-wise, I’m a fan of scorched-earth (not in the short run obviously, but over the long haul). Give me the most effective, most aggressive option available, even if it makes me puke and drag myself around like an extra on The Walking Dead c. 2013. Not because I’m a masochist, but because I’ve had an eye on the long game.
You can put up with almost anything in the short run, especially if you keep in mind that it’ll give you more time. I write this from experience. When I was diagnosed, I went home to a two year old who needed nothing so much as he needed his mom and dad. It was not possible to me to consider anything short of my best shot at longevity; whatever my quality of life might be didn’t matter — it was time that I needed most.
That was fortunate in many respects. Because when my cancer came back I had the consolation of knowing I had done everything in my power to stop it the first time.
Regret is brutal. In the early years, I was part of a breast cancer support group, and many of the members, given the option, chose lesser, easier, treatments: lumpectomy instead of mastectomy; less chemo or no chemo; meditation, diet, or herbs over standard treatment. Most often they did so out of fear of pain. One friend refused chemo, saying proudly, “I won’t put that poison in me.”
Yes, her’s was a personal decision. No doubt about that. And she stood by it — right up to the moment her cancer recurred. Then her regret was bitter and lasting. She called me in tears. “How can I tell my daughter I didn’t do everything to stop this when I had the chance?”
I had no answer except to urge her to do what she could going forward. She started chemo immediately, which gave her a year of life — one precious year to see her daughter graduate from high school.
Another friend responded to her diagnosis by doctor shopping, spending almost all her resources going around the country to find someone to would tell her that, no, what she had really wasn’t cancer and no, she didn’t need chemo. She ended up in a Mexican hospice being treated with herbs and water; her pilgrimage to find a cure for her very treatable cancer went on so long that her cancer became untreatable, and even then she didn’t treat it. She died, and her death was excruciating, not only for her but for everyone around her.
I have more than a dozen of these stories, and it’s not like I go around collecting them.
Point is, all my friends who chose the least aggressive treatment, trying to spare themselves discomfort in the short run, regretted it in the long. Every. One. Of. Them. That was a bitter lesson, when the people who told me early on that I was unnecessarily hard on myself in chemo came back asking, “Why didn’t I do it like you did?”
What’s true is that, when you’re diagnosed, you’re in the best position to kill the cancer right then. That chance rarely comes a second time. If you whiff on the first round and your cancer recurs, you’ll spend the rest of your life regretting it. Yes, even with aggressive treatment the cancer may still come back, but you’ll know you did everything you could, and that regret doesn’t gnaw at you the way it did for too many friends.
Now, for me scorched earth was a no-brainer — I had a freaked-out spouse and a two-year old at home. If I had been closer to the end of my life, I might have been tempted to choose comfort over time, but I rather doubt it, at least on the first go-around. And the second. And the third. When the fourth comes, as it inevitably will, it’ll be hard to abandon a strategy that’s worked so well.
I rather think that most people who choose aggressive treatment are happy with their decision. At least, I’ve never met anyone, of any age or condition, who was sorry about it. I can’t say that about anyone who went light on the first go-around.
Now I know that someone will respond, “But it’s my decision, and nobody’s else’s business!” And I will agree. But I’ve seen the end of this movie. It’s like a choose-your-own-adventure, and I know all the iterations. The one that yields the least regret at the end is the best. But by all means, it’s your business.
Which brings me to my second, but related point:
2. A Better Death
You’re going to die.
For almost everyone reading this, that fact is an abstraction. “Yes, I’m going to die….someday.” It’s not real. I know. I thought that way, too.
If I had to pick the one single thing that cancer has changed for me, it’s my awareness of time, how finite it is. Most people don’t gain this perspective until the very last years of life, and often not even then. Death comes as a surprise, even for the elderly. I know this from experience, too.
So, The first go-round of chemo is your best chance to kill it. Which is what everyone wants, and hopes for. But sometimes, you don’t get what you want. I didn’t.
I was clean for three years, which was more than I expected. By the time the cancer came back, I had already figured out that being in treatment as the end approaches is better than sitting around feeling despondent.
This is hard to write, but it’s been my observation that people who stay in treatment through recurrent cancer usually don’t die of cancer. Something else gets them — pneumonia, heart attack, accident. A dear friend of mine had a rare blood cancer. The cancer was under control although, like me, he lived with one foot in the grave and the other on a proverbial banana peel. But he was feeling good, so good that, one day, to surprise his wife, he cleaned house and lifted something that was too heavy. Tore something, causing internal bleeding. He died, painlessly, two days later; the doctors could do nothing to stop it.
You might think this was awful — and it was shocking, tragic, maddening — but on balance, I have to say it’s not a bad way to go. In general, people who stay in chemo end their lives better off than people who don’t. And having seen the last days of people who decide against further treatment, I have to say that when it comes to picking your poison….
So, in sum, chemo is good, even if all it does is forestall the inevitable (which is inevitable for all of us). Although everyone’s experience is different, having known a great many people in the last — can it really be 24? — years, if anecdotal evidence is anything, chemo patients stay better longer, often right up until the end. For all the people I’ve known who were dying and in treatment, not one complained about the rigors of chemo; viewed against the backdrop of productivity, functionality and quality of life, it beats the tar out of lingering in a morphine-addled haze and dragging the family and friends through weeks and months of anticipation, helplessness, and dread.
I intend to die in the proverbial saddle. I don’t want my family to come to dread every day that I’m still alive. I don’t want them to see my death as a relief for us all. I also want the power to decide when I’ve had enough. Kay dub’s recent diary, I aim to die like a dog, in no small measure inspired me to focus enough to write this diary, mostly because I tend not to think about cancer every day; in fact, the day I don’t think about cancer is a normal one (yes, despite the weekly chemo). I try to live despite it. Kay dub and I are in full accord: as patients, more than anything we deserve the power to determine how our lives will end, the right to say when enough is enough.
But I’m not going to die today. Or tomorrow, probably. So the game plan: plan for the worst. If it happens, you’re ready. If it doesn’t, you’re pleasantly surprised.
And here ends the grim section.
3. Time, and the Rest of the Positive News
I’m an unusual cancer patient because I’ve lived well for a long time; my tumor markers are still scraping bottom and my side-effects are manageable and I live a decent life. Better than decent — it’s great. I’m still here.
I understand something most people don’t realize, really — time is a finite resource and, being human, we take it for granted right up until the moment it runs out. That’s what I meant above about being aware of time and its passing. Samuel Johnson wrote, “When a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” It’s true.
That awareness makes for one rich life. Even on days when I was doubled-up with pain (intellectually I remember the pain but I don’t remember the feeling — if you think back to the last time you were horribly sick, I’ll bet you remember being sick, but you don’t remember how it felt) what stands out most is what I managed to do despite the discomfort. When you push yourself to be out there doing things, you have more to look back on and less room for self-pity.
You also stop being afraid. Your list of things to fear just got severely pruned. That’s very enjoyable, and it’s an effect that far outlasts chemo. Really. I know this has been a grim diary so far. My husband read it and winced, and suggested I link to my first diary here at Daily Kos, from eight years ago, I Live with Metastatic Cancer. He thinks it may be more encouraging. Maybe he’s right.
If someone you love has cancer, remember a few things; they’re easy because you already know them: your friend will need to be strong in order to get through, so concentrate on strength and endurance, and give assists where you can.
Your friend’s life priorities have all just shuffled into place. Breathing takes the top spot, family and friends close behind. Validate those priorities, and don’t obsess on the small stuff. Don’t lecture about diet or behaviors (unless they’re really dangerous behaviors), understand that your friend already knows what they need to do. You can help, you can support, but let the patient take the lead. With some much of their life out of their control, they need to take charge of all those parts of their life that they can. Be respectful. Don’t smother. Your friend is still the same person. The best thing you can do is simple: be a friend. Be the same person you were before, and hold on to that normalcy. Listen more than you talk, and try not to be shocked or scared or judgmental. Just offer a safe space for your friend’s fear, anger, outrage, grief. Slipping a box of ice pops in the freezer is a measure of love. Watch funny movies together; Mel Brooks and Monty Python both hold up well. I’m particularly fond of Seth MacFarlane, and A Million Ways to Die in the West is a guilty pleasure. So is Bad Santa.
And if you’re the one with the cancer, have some patience for the people who love you. You already know what you have to do. That’s clear, since your mind is concentrated wonderfully.
But your friends don’t have your perspective, and they don’t know what to do. They want to help, but don’t know how. They might be weird around you, but you’ll need to overlook that until they relax and settle down. Remember they’re scared, not that they’ll admit it. They’re scared for you, yes, but also for themselves. Because they see themselves in your place, and wonder how they would manage. You can hold it together for them.
Because it really does get better, to borrow a well-turned phrase. Chemo is no fun, and neither is radiation, but they’re doable. The side-effects fade. The ones that don’t, you learn how to live with. You can adjust to a lot when breathing’s on the line, and I write this from experience. Treatments are better, more varied and more effective than they were even when I was first diagnosed. Oncologists now pay as much attention to quality of life as they do to cancer eradication (and if your doctor isn’t paying strict attention to you, slap her upside the head and/or demand another doctor). Cancers are being caught and treated earlier, with better chances of eradication, than ever before. Don’t neglect your screenings, not even the detested colonoscopy. And there are more and more promising hormonal and genetic treatments, some on the market now, some in development. My status is chronic; twenty years ago that was unheard of, and recurrence was a death sentence. That is no longer necessarily the case. You can live with cancer going on twenty-four years and, although there are times it’s been dicey — so far, so good.
When your treatment is finished, you’ll be exhausted. But it gets better. Every day you’ll feel a little better. The chemically-induced depression will lift, the soreness will ease, and you’ll feel stronger. It’s a slow way back, but every day is better. From today on, you’ll welcome the sunrise. You’ve made it another day. This day will be easier than yesterday (and by now you’ll have forgotten how bad you felt yesterday, anyway).
You’ll be your normal you again, with a few changes in perspective and priorities. Usually those changes are for the better. And when it’s all done, as is inevitable for all of us, you’ll find fewer things to regret. One of the good side-effects of cancer is that you don’t leave business unfinished or important words unspoken, and you don’t put up with bullshit.
You’ll feel the sun again, and you’ll know to enjoy it while it all lasts.