Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects.
Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
Our Schedule
Jan. 9: farmerchuck, on cancer’s impact and effects on relationships and community
Jan 16: open
Jan. 23: peregrine kate, on celebrating (more) birthdays
Jan. 30: open
Feb. 6: open
Feb. 13: open
Feb. 20: peregrine kate, on losing body parts
Feb. 27: open
Please contact peregrine kate to volunteer to write a diary.
I've been remembering the feeling, that dread that hits after chemo is finished and you're cut loose. It took some work to resurrect, it was so long ago. But it's buried not so deep in my memory. Fear is a primal memory. Fortunately, pain is not; the body sheds the memory of discomfort pretty easily. In fact, it takes a re-evocation of the pain to wake it, like a bout of flu will make you think, "Yeah, That's what chemo feels like, only more so."
Not so with fear. The memory of it is never really gone. After being followed closely, even obsessively, after all the blood counts and tumor markers, the CAT scans and PET scans and MRIs and Muga scans and blood transfusions and platelets and neupogen and pink magic (kind of a nightmare "greatest hits" list, huh?) suddenly, after all the attention....nothing. The doctor says, "We're finished, nothing more to do, go home and have a nice life."
Really? Last week they couldn't know enough about you. But now they're gone and you're alone, decimated, exhausted, past the end of your resources. And now you're supposed to act as if it's over and....have a nice life? Really?
One of the hardest parts of ending chemo is that you may be done with chemo, but it's not done with you. Recovery takes months. That's the bad news.
The good news is that every day you feel a little better than you did yesterday. Slowly, slowly, you start feeling normal. Cancer no longer crosses your mind sixty times an hour for every hour you're awake. It drops to thirty, then ten, then one. Then you think about it twice a day. After around a year, you realize with surprise that you feel normal; the scars from the surgery are things your eyes glide over without recognition, like a sock behind the dresser that you see without seeing, until one day you focus and realize the scars have faded and lost their angry brooding red color. A whole week has gone by and you haven't thought about cancer.
Now all you have to worry about is recurrence.
Recurrence is every survivor's worst fear, that ninja of worry that stalks you in the middle of the night, when a pulled muscle or a cramp keeps you awake and your mind won't stop running through the options, each one leading to the stark, sweat-drenched "What if...?" Because you hope for a cure; you hope you're done. But friends you've made through treatment or in a support group one day confess, "It's back," and the bottom drops out of your own stomach. You think, "What will I do when it's my turn?" You fear that, one day, it will be your turn.
For the first couple of years after finishing chemo, you tend to panic when symptoms appear--pain, discomfort, cramps, that odd feeling that something is off--things you would have shrugged off before cancer. Panic is a natural response, with good reason; if the average person's worst fear is getting cancer, the cancer survivor's worst fear is that the cancer will come back. You see, when you finish treatment, you hope you're cured, but when your cancer recurs, that hope is gone, and you're faced with the fact that, for the rest of your life, you will be dealing with cancer, in one way or another.
The Difference Between Primary Cancer and Recurrence
An initial diagnosis of cancer focuses on a tumor site, where the cancer cells have taken root. We talk about cancer as if it's an invader, but they're your own cells, mutated and having lost the ability to age and die. All they can do is replicate, and eventually their replication interferes with your body's ability to function.
Primary tumors are staged 0-4. Stage zero is the one you want to have, when the cancer is in situ, meaning it's small and there's a good chance that all its cells are still confined to the primary site. Because early cancer doesn't present symptoms, such early stage cancers are caught by screenings, like Pap Tests, Mammograms, Cat Scans, etc.
After stage 1, when the cancer has gone past in situ, chemo and radiation protocols are recommended. Still, with stages 1, 2, and 3, it's possible to hope for a cure. Wikipedia gives decent definitions of the different stages, as does Oncolink at the University of Pennsylvania. If you're looking for information about any kind of cancer, Oncolink is the first place I'd recommend going. In fact, it's about the only place I'd recommend on the internet.
Once the cancer reaches a certain size (and it's a very small size--not microscopic, but not large enough for you to feel) and has access to capillaries, it starts to release cells into the bloodstream. These rogue cells travel through the body and, if they snag somewhere, they lodge and start to grow. That defines Stage 4, and it is also what makes cancer recurrent. By the time the cancer recurs, there's no longer a primary tumor, just a lot of cells going everywhere in your body. That's why secondary surgery to remove a recurrent cancer doesn't usually happen, unless it appears at the site of the original tumor (meaning the surgeon didn't get a clean margin and cancer cells were left behind.)
My oncologist once told me that, with a primary cancer diagnosis, about half of his patients will fight, about half will give up. With recurrence, that same half and half proportion holds. Some people deny the reality of their condition and spend their time in research, looking for a miracle cure that never seems to materialize. Others, after their anger fades, resign themselves "to God's will," and plan their deaths.
That used to be about the only option, and most of the time oncologists would invest in palliative care, trying to keep their patients as comfortable as possible for as long as possible. That is not the only option any longer. With improved adjuvant treatments, some people go on living, and living well, for a long time. A lot depends on your cancer, your doctor, your access to insurance (because it's extremely expensive) and (I hate to say it) your attitude. If you decide you want only palliative care--care to make you as comfortable as possible while you decline--your doctor will usually respect that. But if your doctor says that's your only choice, get another doctor. And then another. Learn what you can, quickly, and plot your future from that point.
Still, the odds are that, if your cancer recurs, your time in this world is limited. Actually, that's true of everyone, but for healthy people death is an abstract, fuzzy, "some day" thing; it feels sharper, harder, when you can measure your time in months and have a pretty good idea of what the end is going to look like. You'll be depressed and angry--everything you invested in did not pay off, and the injustice cuts hard. It's the end of illusion, it strips away all your defenses, and it leaves you face-to-face with dying. It's no wonder people give up. I don't think there's anything in this world that sucks as much as recurrence.
How Can You Tell It's Back?
Often it's a pain that can't be explained and/or doesn't go away in a day or two. You might not be able to tell the difference between a pulled muscle and the start of a recurrence; if it doesn't stop, have it checked out. And if cancer is disallowed but the pain continues, get more tests. It might have been too early for conventional detection. In other words, you may well feel it before a test can confirm it's there.
Your primary cancer has already destroyed your faith in your body. You'll never really trust it again. If something feels off, if it doesn't feel right, have it checked out. It doesn't have to be painful. It can be just....odd. Don't trust. You want to consult with your oncologist. Your general practitioner doesn't have the expertise to distinguish between the early stages of recurrence and a run-of-the-mill malady. It's better to over-react and feel relieved than to put off treatment and let things get out of hand.
The Morning After
You wake up. You're still alive. As the sense of crisis fades, as you develop your fight strategy, you begin to realize a few things. For one, you're free.
All those illusions, all those little mechanisms you used to put off your dreams, all those promises of later I'll do it, they're all gone. Your priorities line up, and you know--you really know--what's important. You take a deep breath and you resolve to get the best out of the time you have left.
In that respect, it's not a bad thing. You will not die without having lived fully, provided you accept the reality of your condition.
Last week I wrote about Debbie, who did not accept the reality of her condition and found one reason after another not to trade off a doctor who had clearly lost all interest in her case. It was not until close to the end of her life that she admitted she couldn't let herself believe it was real, even though her body was breaking down. I can't blame her--I did something of the same thing, myself.
Then there was Joan, who reacted to a recurrence of her colon cancer with over-research. Her cancer wasn't especially aggressive, and the lab tests indicated it would respond well to chemotherapy, and so chemo would lengthen her life. That wasn't good enough; she fired the doctor who hadn't cured her in the first place and consulted others. All gave her the same advice--chemo. She made visits to Johns Hopkins, Sloan Kettering, Fred Hutchison; she went to Cancer Treatment Centers, tried meditation, herbal cures, internet-provided snake oil "cures," and finally went to Tiajuana for a series of treatments that she never talked much about, other than that it involved holistic food and huge quantities of water. By the time she got around to the chemo, nearly a year had passed and it was too late, the cancer had spread too far--from the colon to the liver, lungs and pancreas--and she was too weak for it to have any effect.
So...you're scared and depressed and angry. The sooner you let all those emotions wash through your system so you can think again, the sooner you'll pick up the reins, decide what treatment you're going to accept, and figure out how you're going to live. You choose the treatment that works for you, that fits within the parameters of your acceptability, and that is a very personal decision. Not everyone will choose the same thing, but it's likely that, as long as you're not in denial, you're going to go with the treatment that gives you the best quality of life for the longest period of time.
The Takeaway
Recurrence is not the end of your life. It may be the beginning of the end, it may not be. One thing is certain: perhaps for the first time, you will really be in control of your life, in all possible ways. All the illusions you may hold that you have to please someone else and defer your own fulfillment, all the things you're supposed to do because you've always done them, all the need to be like everyone else--it all goes away. As Samuel Johnson said, "Being hanged in a fortnight focuses the mind marvelously." Everything gets very clear very quickly.
Make sure you and your doctor are on the same page. Take someone with you to your appointments--two sets of ears are better than one. You'll focus on what you need to hear, while the other person will get the rest of it. Write your questions ahead of time, and don't forget the list. If your doctor doesn't fundamentally agree with you, or you suspect that your life is not his primary focus, get another doctor, one with whom you can reach an accord. Agree on a treatment plan, but keep your options open in case the first thing you try doesn't work well. Be sure to pay attention to your quality of life.
Every treatment has side effects. Plan for them. They can all be managed. You'll probably be depressed--get an antidepressant. It's not a sign of weakness; if there's anyone in the world who has the right to be depressed right now, it's you. If you have to take painkillers for the rest of your life, you'll manage it. Opiates shut down your digestive system; colace will help. Whatever symptoms you have, talk to your doctor about them. There will always be things you can't control, but you learn how to cope.
For instance, one of the chemo drugs I take is Xeloda, which is an oral form of 5-FU. It's been around a long time, and it has side effects that manifest in funky ways over time. My nails are a mess--they're ridged, weak, frequently inflamed, and in the winter I develop deep painful cracks in my fingers along the nails. It's just something I have to live with, because treating the condition might present more inconvenient side effects. Same thing with the one week out of four that I get sores in my mouth, and cracks in the lining of my nose. I've lost sensation in my fingertips and parts of my feet. I treat the symptoms--they're not unbearable. In fact, I have it pretty easy. The other stuff, however, important stuff like bone density, we treat. Bear in mind it's a balancing act, and sometimes it's better to put up with the side-effect than treat it with still more medicine.
Your treatment may drag you out. You'll adjust. You'll pare your schedule to accommodate what's important. You probably know already from your earlier experience that, when it comes to those significant events in your life, what's important is to be there. And when you look back on those events, you will not remember how bad you felt (the body is forgiving, remember?) Right after my bone marrow transplant, when I was not supposed to be around anyone, my son was part of a church Christmas pageant. Although I know I felt awful and was deeply embarrassed about being bald and wearing a mask, I dragged myself to the church to see him. Now, I don't remember feeling bad or embarassed; I remember seeing him on the stage, and I remember how he lit up when he saw me in the back of the auditorium.
I'm a big advocate of treatment, for two reasons (and I write this hoping I will not offend anyone who believes chemotherapy is an unacceptable option--that's a personal decision, and beyond anyone else's judgment. But-- when cancer is recurrent, chemo offers benefits that other treatments don't.) First, you stay stronger longer. Your quality of life, especially toward the end, is better than it is for people who prefer to let nature take its course. We stay in the traces, pulling along and taking from life as much as we can, almost until the very end, instead of lingering for a long time. Second, our ends tend to be quicker; we don't suffer as excruciatingly, and we don't exhaust our families until our deaths become a relief for them. I know for myself that when my time comes, I would prefer my family remember how I lived more than how I died, and chemo is the best chance I have for that outcome.
You'll figure out quickly what you can control, and you'll stop worrying about what you can't. You'll tell the truth--after all, you have nothing to lose. You won't be afraid of much. You'll go to bed without regrets.
In one very weird way, you can consider your situation a blessing. Most people go through life with the illusion of immortality; death is a "some day" thing that happens to others. Only the very old feel the creeping shadow of death, the very old, and us. Death shadows us, it whispers to us that our time is limited, and we know what that means. We live every day with our minds marvelously focused. Every morning we wake up, it's a triumph. Every day from now until the end of our lives, however long that may be, every day we will live.