posted by Amy on Jan 10

I just finished reading Ursula K. Le Guin’s novel, The Left Hand of Darkness. One of the characters talks about how both atheists and theists are focusing their attention on the same subject. God is their ultimate concern, whether as believers or deniers. “To oppose something is to maintain it.” That tension, that tug-of-war, will be perpetual. If opponents of any sort want something different to happen, they have to choose a new path.

There is a “religious” cult in the book that won’t say whether they believe in a god or not. The strength of their sect comes from learning which questions are unanswerable, and then not answering them. As for answerable questions, they will, for a price (set on a sliding scale depending on the wealth of the questioner). engage in a practice called Foretelling. But they explain that their purpose in doing so is to demonstrate the uselessness of having the answer to the wrong question.

This issue comes up a lot in Cancerland. People want to know their odds of recovery, and how long they are likely to live. It’s a natural impulse, and there’s nothing wrong with it, but it’s the wrong question. I sometimes ask people what they would change about their lives if they knew how long they were going to live. The next question is, if it’s important to you, shouldn’t it be important in and of itself, without regard to how much time you have left?

Anne Lamott in Bird by Bird suggests we frequently stop and ask ourselves if what we’re doing at any given moment is what we’d be doing if we knew we were dying tomorrow. That doesn’t mean we should live every day as if it were our last, but it does provide a metric for checking in with whether our actions are congruent with our values. No matter what you think you care about most, the life you have is essentially the life you’ve designed for yourself. The things, ideas, and people to which you devote the most time and energy are actually what you really love. And hate is not the opposite of love. If you’re putting energy into it, then it’s your real purpose in life. “To oppose something is to maintain it.”

I don’t believe we give ourselves cancer. I don’t believe we can “beat” it with “positive thinking.” But I do think cancer can be understood as a messenger. My body had something to tell me.

Last year I noticed I hadn’t died from cancer yet, and I felt stuck. It’s not that I was sitting around waiting to die, but I also didn’t have much intensity of feeling about where to go from there. I realized I didn’t know what I really wanted or needed. I was procrastinating, spinning my wheels. I entered counseling intending to address some very old, very painful truths about my past. I don’t know why it’s healing to say out loud (or write about and then discuss) things that I had never before told anyone, but, with the right therapist, it is. She gave me understanding, encouragement, and acceptance. She helped me see my past more stereoscopically and holistically. She encouraged me to ask for what I want and need. She supported me in my efforts to understand and forgive–myself and others.

One of my most significant insights was that cancer was offering me a way out. If I was simply too tired or discouraged or fearful to go on, then I didn’t have to. But, at least for me, this “way out” was not a new gift, but was instead a manifestation of the fear, rage, and anger in my family of origin. It was a time bomb that had been ticking inside me all my life. To be sure, I had been working for much of my life to defuse it–learning healthier habits, making healthier choices, actively seeking wholeness and healing, but I hadn’t cleared it all out yet.

Erich Fromm says some people are motivated by “necrophilia,” not in the sense of being sexually aroused by dead bodies, but in the sense of loving death. The opposite of necrophilia is biophilia. Biophilic people are trusting, courageous, openhearted, generous, and gracious. They welcome spontaneity, laughter, playfulness, and surprise. Necrophilic people are suspicious, mistrustful, stingy, controlling, narcissistic, destructive, and angry. They are fundamentally insecure, and they feel threatened and terrified by anything they can’t control. Although there was some beauty, laughter, spontaneity, and warmth in my family of origin, the primary orientation was necrophilic.

Until I did that work with a wise and loving therapist, I had not allowed myself to want to be well. Most of my life I settled for less than what I really wanted and needed. Most of the time I didn’t even know what I wanted. I had not had much practice in taking care of myself or advocating for myself. I was raised on betrayal, so having my body betray me was really just more of the same. I used to encourage my children to ask for what they wanted, and not deprive themselves of the chance to get it. I preached that, but I didn’t practice it. Now I know. I want the cancer to go away and not come back. I want to have a strong, healthy, body that is free and clear of disease.

I want to live fully and intensely, with as few regrets as possible. I want to be open to new ideas, new knowledge, new possibilities. I want to be a light to other people as they seek their own mission, their own bliss. To the best of my ability, I’ve already done that. But I want more.

 

 

 

 

posted by Amy on Jan 3

A woman I know died of cancer recently. I missed her memorial service because I had chemo the day before and just didn’t have the energy to leave the house. I know she’d have understood. Her illness and treatment side effects made it impossible for her do do much of anything. She lived 20 months after being diagnosed with a neuro-endocrine tumor in her mediastinum (chest) that had metastasized to her spine. The way she found out she had cancer was from injuring her back dancing vigorously. She had a Caring Bridge site where she, her husband, and her children posted often. I enjoyed reading their posts. It’s a close-knit family of amazing writers. They seemed to be coping well, under the circumstances. Their lives had changed dramatically, and they focused on loving and supporting one another. Whenever I commented I tried to balance other people’s exhortations to “be strong” and “fight.” Having metastatic cancer not a matter of “winning” a “fight.” Rather, it’s a matter of choosing how to live, as well and as honorably as one can. For nearly everyone with metastatic cancer, the outcome is never in doubt. Only the exact contours are unknown, which I consider a blessing.

At about the same time, a long-time member of one of my online groups died from the same type of breast cancer I have. She was a very knowledgeable and supportive group member. She posted frequently with encouraging words and suggestions. She didn’t complain about her situation. She kept up on new discoveries, and never quit looking for ways to live with her cancer rather than die from it. She will be sorely missed.

Both women played the hands they were dealt with grace, grit, gratitude, intelligence, and style. Being diagnosed with an incurable, terminal illness does have a way of focusing the mind. And people all make their own choices about how to use the time they have left. I try very hard not to judge. It’s none of my business. And yet. . . . .

I think cancer cause activism is misdirected. Raising “awareness” and trying to raise funds for research to benefit a specific type of cancer is based on a false premise. It comes from a laudable desire to help, but it misses the point. Our market-based, hyper-individualist culture blinds us and distracts us. A public health issue as enormous as this should be addressed at a macro level. The purpose of government is to take care of things that can’t be effectively addressed at a more local or individual level, especially things that are not solvable with private enterprise. The budget for the National Cancer Institute has not been increased in over ten years. That’s incomprehensible to me.

If a neighbor’s barn burns down it’s effective and appropriate for everyone in the neighborhood to get together and have a barn raising. But if, as I think, every one of the 330 million people in the U.S. has been affected by cancer, then the only sane response is to do more high-quality basic research, unconstrained by market competition or the need to produce quick results. (One of my favorite sayings, from when I was married to a research scientist, is “If we knew what we were doing it wouldn’t be research.”) That’s how the cancer drug that’s doing a bang-up job on my cancer right now was discovered. We, the people, paid for the NCI to go out looking for new medicines, and a great cancer drug called Taxol was extracted from the bark of the Pacific Yew Tree. The way for scientists to benefit from each other’s findings is to eliminate the profit motive. Publicly funded pure research is the only way we’ll make significant progress on a problem of this magnitude.

I am not happy about the fact that approximately 39,000 people die each year from metastatic breast cancer in the U.S. Of course not. But, worldwide, 30,000 people, many of them children, are still dying every day from simple, easily preventable causes like dysentery. We could be saving millions of people with relatively trivial investments in water, sanitation, vaccinations, and hydration therapies. Worldwide, most people get no cancer treatment at all. They don’t even get pain relief when they’re dying. They also die from HIV/AIDS, tuberculosis, malaria, and other infectious diseases that we have the technology to treat or prevent. Compared to what the U.S. spends to incarcerate its own citizens and wage war on a goodly percentage of the rest of the world, the cost is minuscule. If we really believed in human rights, and that all lives matter, we’d be behaving in radically different ways. That bothers me far more.

I live in the U.S. and I have great health insurance. It costs a fortune to keep me alive. Sometimes I even wonder if I’m worth it. I certainly don’t feel like a victim.

Edited 1-4-16

posted by Amy on Dec 27

The lectionary text from the Gospel for today is the story in Luke about Jesus and his parents going to the Temple in Jerusalem, as they did every year. On the way back, Mary and Joseph notice Jesus is not with the group. They go back to look for him, and find him in the Temple, talking to the scholars and holy people. When Mary and Joseph ask what’s up, Jesus says he’s going about his father’s business.

First, why did it take them so long to notice he wasn’t with them on the return trip? That’s easy. The men and women would have walked in sex-segregated groups. The children would be with the women. Jesus was 12–about the age a Jewish boy is considered an adult, so he had the option of walking with the men. Most likely Mom thought he was with Dad, and Dad either wasn’t used to keeping track of him, or assumed he was with his mother.

I heard a children’s sermon on this text today. It started out fine. The man said we don’t know what kind of childhood Jesus had, because the Bible doesn’t say. That’s true, but I think we can guess how it was. Both Mary and Joseph were visited by angels before Jesus was born, and they were each told the child would be the special, chosen son of God. Magi from the East came to visit Jesus when he was two years old. They brought extravagant gifts and worshiped him. So I’m pretty sure Mary and Joseph respected, protected, and adored Jesus. They treated him as God’s precious son. They showered him with love. They gently taught and led him. You would not humiliate, frighten, or beat a child you knew to be holy and anointed. You’d take very seriously your role as a steward of the Savior of the world.

Then the man giving the children’s message said he thought the point of the story was that Jesus obeyed his parents and returned home with them when they found him in the Temple and asked him to leave. The speaker went on to observe that the commandment to “honor your father and mother” comes with a promise: “so your days may be long upon the earth.” That’s all well and good for honorable, mature, loving parents who treat their kids kindly and take responsibility for the precious child that God has put in their care. Unfortunately, the vast majority of children in the world are treated harshly and cruelly. Their humanity is denied. Their feelings are discounted or dismissed. They are beaten, sometimes starting in infancy, to make them obedient. The man said the children should respect, honor, and obey their parents. He said where he comes from, the teachers carry sticks that they use to beat the children, to make them obey.

The flip side of “so your days may be long upon the earth” is, “or your parents might have to take drastic measures.” The Old Testament provides for putting disobedient children to death by stoning.

Furthermore, the promise of long life is fraudulent. Being required to honor and defend dishonorable parents, having to forget the terror, rage, confusion, and suffering they caused you when you were small and defenseless, struggling to make sense of the violence and hatred, being told it is “for your own good,” cause an untold amount of suffering throughout life, and lead to premature death. Psychologists and psychiatrists are just beginning to recognize something they call “complex developmental trauma” that results from habitual child abuse. Addiction, risky behavior, depression, domestic violence, and all sorts of life-threatening illnesses, especially autoimmune diseases, pulmonary diseases, and cancer, disproportionately affect people who were maltreated as children.

Every human being is a precious child of God. Every person deserves love, attention, respect, kindness, and gentle, warm, safe contact with his or her caregivers. Every parent is, or should be, a steward of God’s precious gift of life. Children raised compassionately and nonviolently love their parents naturally and unconditionally. They don’t have to be commanded to honor them. They merely reciprocate the honor they’ve been shown. They obey because they trust and respect their parents. They trust and respect their parents because their parents are respectable and trustworthy.

It’s never too late to reparent yourself, and give yourself the love, kindness, compassion, and respect that you deserve. It’s also never too late to begin treating your children as precious children of God. You probably can’t do it alone, but there are good, effective therapies for repairing the weak spots caused by uneven parenting. If you can’t afford therapy, join a Twelve Step group and get a good sponsor.

Edited for clarity January 3, 2016

 

 

 

 

 

posted by Amy on Dec 22

Here we are again. Another trip around the sun. Another winter solstice, when those of us in the northern hemisphere can look forward to the days slowly getting longer again. We are in the deep midwinter now, though the coldest, snowiest days are still ahead. It’ll take a few months for those extra rays of sunshine to warm the soil and wake up the plants.

Forgive me if this is too facile an analogy, but living with cancer is like experiencing seasons, including the “flywheel effect” of not seeing results until later. I had that great scan in October, but I’m still bald, I still have neuropathy, my stomach still hurts, and I still get slammed with fatigue, diarrhea, and other random annoyances. I’m still getting the heavy chemo that brought me that beautiful scan. I will have one more treatment, then wait three more weeks, then get another scan. If that scan shows “no evidence of disease,” then I’ll drop the heavy stuff and seek stability (and some sort of longevity) on the two antibody drugs that I also get. I’ll still be getting infusions every three weeks, but it will be easier to tolerate. And my hair will grow back.

Of course the major difference between the seasons and this cancer roller coaster is the intervals are impossible to predict. I saw a post last week about a young woman with metastatic breast cancer who died recently. Four months ago she was “NED” (i.e. she had “no evidence of disease.”) Another woman with a diagnosis similar to mine had no evidence of disease for two years on the same two antibody drugs that I get, but her cancer has come roaring back and is making her very sick. Most likely, something like that will happen to me. Not yet, but at some point.

I don’t know what will happen, or when, or exactly how; however, I can be sure I will die from some cause at some point, and it won’t necessarily be this cancer. I always wear a seat belt. I look both ways before crossing a street. I use a hand rail on stairs. I got rid of a pair of shoes that were a bit too large and tended to make me trip. I had my first colonoscopy.

As Aristotle might have said, “All women are mortal. Amy is a woman; therefore, Amy is mortal (which means she will die.)” Everyone “knows” that, but if you’re healthy it’s easy to put off thinking about it. With stage IV cancer it’s always in view. Sometimes it’s staring me in the face. Most of the time I just glimpse it in the corner of my eye. But it’s almost always there.

My wish for all of us is to be just a bit more conscious of our mortality. Don’t put off doing what makes you feel most alive, most connected, most real. At a high school reunion in 2001 a man made a speech to that effect. He must have known he was sick–within six months we heard he had died. And don’t take your relationships for granted. Especially me. I don’t want you constantly worrying about my health, and I don’t want you to suffer. But remember I’m on borrowed time. Given a choice between doing something together now and putting it off until later, let’s choose an earlier date. Because you never know.

And don’t wait until you get sick to start living fully, because then you might not have the time, money, energy or physical ability to do those things you always wanted to do. Seize the day, or the hour, or the moment. Live. Breathe. Be grateful. Be aware.

Here comes the sun. Praise be.

 

posted by Amy on Dec 11

I moved across country at the end of August, 2015, so I had to get a new oncologist. When I was first diagnosed my first oncologist told me her goal for me was “permanent remission, normal lifespan.” And why not? Just because very few people with my diagnosis even make it five years (22%) doesn’t mean we shouldn’t try to beat the odds. For the record, my cancer was diagnosed 56 months ago, and I’m still here.

The last time I saw my new oncologist, we were planning the schedule for my next two infusions. Because of my travel schedule and Thanksgiving I ended up with a 4 1/2 week interval between visits. (We’re making up for it with a 2 1/2 week interval on the next round. The “standard” is three to four weeks between infusions.) The doctor said something odd, though. She said, “If we were treating you with curative intent I’d insist on sticking to the schedule.”

“Curative intent” is a term of art in cancerland. It’s one of those phrases doctors use that should never be uttered in the presence of patients. (Another one is “salvage,” to refer to third-line, fourth-line, and later treatments after the ones that seemed most promising either didn’t work or quit working. To a lay person, that’s just a horrible word.) I think she was referring to the fact that with an early stage breast cancer diagnosis there’s a reasonable chance of making the cancer go away forever. It works that way about 70% of the time. But for someone like me whose cancer has metastasized, the intent is palliative and not curative.

Palliative care is a holistic, integrative effort to give a person the best possible quality of life, controlling pain and other symptoms effectively and using medicine judiciously, keeping in mind the difficult balance between benefits and costs. It doesn’t mean, as I used to think, that the underlying illness is not treated. It just means a different calculus is applied than in situations where the doctors can say, “This course of treatment will be hellish for you, and it will rock your world for a year, but there’s a good chance that when it’s over you’ll get to go back to what you were doing before your diagnosis.”

I have two things to say about that. First of all, I don’t think it’s ever possible to “go back” after something as devastating and momentous as cancer diagnosis and treatment. It changes everything. It forces fears, doubts, existential questions and past trauma to the surface, and the ways people with cancer and those closest to them choose to handle those things will inevitably alter the course of their lives. Secondly, a crisis like cancer presents an opportunity to think about big questions of meaning, purpose, and legacy. There may be stuff you were doing that was not serving you well, or not leading to worthy outcomes. Confronting one’s own mortality can be traumatic, but some people experience “post-traumatic growth.” To the extent that happens, then it’s appropriate to say they’ve been healed. If “cure” means putting everything back the way it was, it may be too limited a goal. Maybe you were merely surviving before. To me, healing means choosing to thrive. And for a human being to thrive, there has to be a sense of meaning and purpose, and there has to be loving interaction.

Regardless of whether health care providers think there’s “curative intent” in a given situation, we can all choose healing. Whatever was toxic, destructive, or bad before can be replaced with better choices, better thoughts, and better behaviors, and that will result in a better life. Something about my prior life resulted in me getting cancer. Maybe that’s just a matter of bad luck, but I’m not fatalistic. Whatever cards I’m dealt, I have choices in how to play them. The past is an illusion. It’s over and done. I can’t go back, nor do I want to. The future–for anyone–is uncertain. The only thing I have any control over is the present moment. And in every moment of now, I choose to rise above fear, anger, bitterness, regret, and envy. I choose to cultivate awareness, equanimity, creativity, forgiveness, compassion, and kindness. I choose to stay in the light.

Whether or not that means I’ll get that “permanent remission, normal lifespan” is almost beside the point. If I’m living on borrowed time, then I definitely want to make the best of it. If I luck out and get another twenty or thirty years to dance on this beautiful, broken, mysterious, crazy planet, then so much the better.

posted by Amy on Dec 5

Last summer I read two books that explicitly connect trauma and illness. One, by the late Swiss psychiatrist Alice Miller, is called The Body Never Lies; The Lingering Effects of Hurtful Parenting. The other, by Bessel van der Kolk, is called The Body Keeps the Score; Brain, Mind and Body in the Healing of Trauma. Miller wrote many books about what she called “poisonous pedagogy,” the utterly normal but toxic methods of raising children in certain European/American cultures. Van der Kolk is an expert in trauma and healing. I first learned about him in a seminary class called “Theology and Trauma.”

In his book, van der Kolk describes in detail a landmark study conducted by the Centers for Disease control and Kaiser Permanente. In its initial phase from 1995 to 1997, thousands of Kaiser patients were asked about ten specific “adverse childhood events” and then their answers were linked with their medical records. The ten questions related to physical, emotional, and sexual abuse and other sorts of adverse experiences. Each yes answer is scored as one point; therefore, a person’s ACE score can be any whole number between zero and ten. Van der Kolk says, “The ACE study revealed that traumatic life experiences during childhood and adolescence are far more common than expected.” In a mostly white, middle class, middle aged, relatively prosperous sample, only one-third of the respondents had a score of zero.

Van der Kolk describes many correlations between adverse childhood events and adult outcomes. For example, 66% of women and 35% of men with an ACE score of four or higher are chronically depressed, whereas the overall rate of chronic depression for people with an ACE score of zero is 12%. But I was diagnosed with melanoma in 1999 and metastatic breast cancer in 2011, so the finding that most engaged me was this: Those respondents with an ACE score of six or higher were four times as likely to have cancer. Van der Kolk says, “the ongoing stress on the body keeps taking its toll.”  (As sometimes happens to me when I blog, WordPress won’t let me insert a link, but if you go to http://www.cdc.gov/violenceprevention/acestudy/ you can get current information about this research.)

The book tells of many new and innovative approaches to helping people heal from trauma. It is a hopeful, encouraging book, and I recommend it enthusiastically. But right now I want to focus on what van der Kolk says about the ACE study. The study authors concluded that they had “stumbled upon the gravest and most costly public health issue in the United States: child abuse.” They calculated that “eradicating child abuse in America would reduce the overall rate of depression by more than half, alcoholism by two-thirds, and suicide, IV drug use and domestic violence by three-quarters.” Besides all the suffering, harm, and early death that would be alleviated, the economic effect in reduced medical costs and increased productivity would be worth many billions of dollars. Yet the study has not led to changed child rearing practices or changed priorities in public health.

Alice Miller’s thesis, that “normal” child rearing practices are abusive, toxic, and harmful, and that they cause severe, lifelong damage to the emotional, psychological, and physical health of millions of people, is controversial. She spent her entire career railing against conventional psychoanalysis and trying to get people to take poisonous pedagogy seriously. She wasn’t able to make much of a dent in conventional “wisdom” about child psychology or child rearing. It seems obvious to me that the ACE study goes a long way towards vindicating her. But this is an extremely touchy area. As Miller describes in detail in her books, most people who were abused as children deny it vehemently. And they get extremely defensive whenever they come close to the truth.

I have cancer and I want to heal from it. If possible, I want the cancer to go away. Even if that doesn’t happen, I want to have as healthy, vital, strong, serene, and rich a life as possible in the time I have left. Participation in groups and other work I have done since my diagnosis have led me to a deeper understanding of healing. The body, mind, and spirit are not separate, and healing is not simply a matter of correcting an identified physical malady. One reason I blog and participate in support groups is to share what I learn in hopes of benefiting others.

One day last summer when I tried to talk about Miller, van der Kolk, poisonous pedagogy, childhood trauma, and the ACE study in a group session, the leader forcefully silenced me. She interrupted me twice to make me quit talking. I was not saying that “trauma causes cancer,” though maybe that’s how she heard it. I was trying to say that there is hope for people who have experienced trauma. Brains and nervous systems can be rewired, and brain chemistry can be corrected. She said this line of inquiry was “interesting” but “irrelevant.” She was very agitated. There were only two other patients there that day, and one of them was trying to participate in the discussion as well, so she was silenced too.

I was very hurt. I felt demeaned and rejected. I wanted to walk out, but I stayed until the end of the session and haven’t raised the issue again in that setting. But I’m writing about it because it’s important.

When you get cancer treatment they don’t ask you about past trauma. If you ask for it you can get prescriptions for anxiety or depression, and you can see people who specialize in the psychological care of cancer patients, but as van der Kolk, a psychiatrist, says in his book, psychoactive drugs have their uses, but they only treat symptoms. That can be a significant first step to healing, but it’s not sufficient.

Treatment for people with Stage IV cancer is palliative; there is no “curative intent.” The goal is to control the cancer as well as possible for as long as possible, with acceptable side effects. I understand that. I know it’s based on science. It’s been working quite well for me, and I have no complaints. It appears that, in the same vein, psychiatric treatment for cancer patients is palliative and not curative in intent.

But, as I said, my personal objective is to heal completely (whether or not the cancer goes away, though that is my preferred outcome). Trauma gets lodged in the body, and probably requires some bodily, kinetic solutions such as yoga, walking meditation, and other activities in order to be dislodged. It distorts the “fight, flight, freeze” circuitry of the nervous system. I was in my late 30s before I realized it’s not “normal” to be in a state of heightened alertness all the time. I had to learn to like being in a “resting” state. I had to learn to like serenity. When, in my mid-40s, I figured out I had PTSD, I learned techniques for interrupting the “flooding” that occurs when my PTSD is triggered. Through prayer and meditation I have been cultivating a new baseline state.

I am also much more aware of how certain people and relationships affect me, and I am more willing to protect myself from toxic people and interactions. Growing up, I didn’t expect anyone to take care of me or protect me from harm. As a matter of fact, the people closest to me caused me tremendous harm. Now, as I work on growing up again, I am learning to be a good parent to myself.

When I was first diagnosed in 2011 I worked with guided imagery to heal from cancer. I also obtained imagery and affirmations for trauma, but I only did it a couple of times. It was very, very intense. It seemed too daunting. I didn’t know if I’d live long enough to get that stuff resolved. Recently I’ve revisited the trauma tape, and, as promised in the introduction, the “story” has changed and softened over time. It (along with in-person therapy and journaling) has helped me figure out how I really feel, and what I really want and need. I am becoming more comfortable in my own skin, more authentic, and more real.

 

posted by Amy on Nov 28

I belong to two online breast cancer support groups. One is a closed Facebook group for women with metastatic breast cancer, and one is a group for my particular subtype of breast cancer, for all stages. Lately I’ve been paying much less attention to both of these groups.

One consequence of being in relationships with people who have Stage IV cancer is they die. That’s certainly a down side to participating in support groups, and it’s always sad. Sometimes, as I’ve said in other posts, it just gets overwhelming. However, I really do think it’s better to have loved and lost than never to have loved, and death is part of life. Death is hard, but it’s also utterly natural. Every living thing dies eventually.

No, it’s not suffering and death that’s souring me on support groups. It’s pseudoscience.

Most of the claptrap about cancer is harmless enough, and a lot of the advice is probably good, though not usually for the bogus reason given. For example, some say “cancer loves acid” and claim you can raise your body’s pH, and that will help you. Well, the way you can supposedly do that (you can’t) is by eating lots of fresh fruits and vegetables. Almost anyone who does that will start to feel better, because fruits and vegetables are good for humans. We’re omnivores!

There’s also a lot to be said for placebo effects. There definitely is a mind/body/emotional feedback loop that affects health. Belief is a powerful thing. I have nothing against harmless supplements, potions, and nostrums, as long as they don’t prevent people from getting actual medicine for what ails them (or vaccines that will prevent disease.) Bring on the complementary therapy. If it makes you feel better, more power to you.

People with Stage IV cancer are also a special case. It’s incurable. So deciding to spurn “conventional medicine” and get “alternative” or “natural” “treatment” may do no harm at all. No one can predict the course of any particular Stage IV cancer. It may not make any difference, and people have a right to refuse treatment. Just spare me the claims that “Big Pharma” can’t do any good for anyone, or that chemo kills more people than it cures. There’s not a shred of evidence for that. Just because some automobiles are defective, or some people get hurt in car accidents, doesn’t mean we should (or can) all start using magic carpets instead.

It drives me nuts when people fail to use any critical thinking skills, or never had any. I’m not going to go into all the signs of quackery, but one major tipoff is when there is no evidence to back up a claim. Link to the darn study that supposedly proves your point, so I can read it and evaluate it myself. No link? No credibility. Also if there’ s no explanation of exactly HOW some miracle cure works (and “It’s a miracle!” is not an explanation), then it’s probably false. And so on. There’s a lot of good work by professional skeptics who debunk the bogus claims. You can easily find it if you look.

I don’t even know why it bothers me so much, but it can really piss me off. There’s so much bullshit and snake oil connected with cancer. Gullible, desperate people watch “documentaries” and buy nostrums and potions. And not only do they buy them, but they proselytize for them. Believe whatever you want about your “juice cleanses” or your chakras or your “one weird trick.” Just keep it to yourself. And if you are selling this crap, profiting from the misfortune and desperation of others, you should be mortified. Shame on you. Why can’t you make an honest living?

At least two ordinary everyday things about humans and cancer contribute to the gullibility and credulousness. One is that we humans are storytellers and meaning-makers. We constantly try to make sense of what’s going on around us, and we notice things that happen together and come to believe they somehow share some causal relationship. Sometimes that might actually be true, but the point is we place a high priority on making sense of things and trying to gain some feeling of control. This characteristic opens up multiple possibilities for misleading oneself or being misled.

Cancer is extremely complex, and can be mysterious. Spontaneous remissions occur, and, depending on what happened before then, it’s easy to think it was the kale smoothies or the Gerson therapy or whatever that made it happen. This kind of story even pops up on sites that should know better, like this BU Today article about a student whose metastatic melanoma went away. She is apparently still in remission, which is great for her, but she has gone from attributing her good fortune to “Gerson Therapy” to saying it was prayer, which brought a miracle. Maybe it did, but the switch in explanations is interesting.

That’s just it. You never get all the details. Somebody supposedly cured her own cancer with carrot juice, and her testimonial fails to mention she also had surgery and radiation. No one vets the claims. No one follows up. How do we know it’s a true story? You also never hear about all the people who used something and didn’t get well or died.

I am willing to believe that support group members who spout nonsense about mineral deficiencies that can only be detected with special tests, or who think they can “correct” those deficiencies by soaking their feet in a special substance, or who swear by certain supplements (etc., etc., etc.) mean well and are really trying to help. But I hate it. It sets my teeth on edge.

Just because a certain food or herb kills cancer in a petri dish doesn’t mean that eating the stuff will have any effect on cancer in a human body. What’s the dose? How do you get the stuff to the cancer cells? And just because two things occur at the same time does not mean you can conclude that thing one caused thing two. All you know is they occurred together. You prayed and your friend got well. You can’t go back in time, not pray, and see if he got well anyway. But you’ll probably pray all the more fervently next time. It can’t do any harm–go ahead and pray (I do). But you really don’t know if it did any good.

I just get weary. Life, especially  for someone with a cancer diagnosis, is too short.

Stuff happens. It’s no one’s fault and no one can say why. Some stuff just can’t be fixed. Support groups should be for encouragement, kindness, understanding, and verifiable, evidence-based information. But, like seemingly everything else on the internet, it doesn’t seem possible to get (and give) those things without having to confront stupidity, ignorance, paranoia, and useless advice. Sometimes I just have to walk away.

 

 

posted by Amy on Nov 28

A long time ago I posted about knitting dishcloths. I think I said they’re colorful, inexpensive, useful, and quick to make. By the time you get bored with one you’re almost finished. It’s also a great way to learn new stitch motifs, for all the same reasons. They don’t take long. Cotton yarn doesn’t cost much. And almost everyone uses little square cloths to wash dishes and wipe down counters, so there’s no shortage of recipients for your little cotton offerings.

In the intervening months or years, I’ve taken my own advice to heart. The first lace I ever did was in dishcloth patterns. I’ve since knitted a “feather and fan” muffler for myself, and a big, complex lace shawl for my daughter. When a friend suggested I make “log cabin” dishcloths, I used the internet to learn how. After playing with and refining that technique—and ending up with dozens of dishcloths, most of which I gave away, I made 30 log cabin squares using wool yarn and put them together into a blanket for my youngest son. I also made a log cabin cover for a throw pillow that matches a prayer shawl I made.

I learned how to do an interlocking diamond pattern from a dishcloth pattern I found on Ravelry. Then, using the same diamond motif, I knitted a wool blanket for another son, and also a lovely, brightly colored baby blanket for a friend’s baby. I figured out how to create a lace panel that can be knitted onto another piece, I designed and made several lace-edged hand towels to give as gifts. Hand towels are like dishcloths in that they are useful and can be made quickly. Also, it’s absolutely certain they are one of a kind. Using a stitch dictionary and linen-blend yarn, I made two linen hand towels and coordinating dishcloths as a wedding present last spring. Then I found some pure linen yarn I could afford, and made a little finger tip towel and then a larger piece using, appropriately, a motif called “linen stitch” that I found in a stitch dictionary.

In the process of making more diamond pattern dishcloths I’ve even figured out a way to improve on the pattern. My version is more nearly square, and I solved an irksome (to me) flaw in how the edges look. The designer of the pattern I started with used a motif in a “stitch dictionary” without actually saying that’s where she found it. I have since hunted down and purchased the 1984 book, and two others. I now have instructions for how to make hundreds of motifs that I can use in all sorts of personal designs.

Knitting dishcloths helped me learn to recognize various stitches and techniques when I see them in other people’s work. That allows me to copy or adapt what others have done. In a bedroom where I stayed as a guest last Saturday, I saw a sweet little afghan knitted in blocks of textured patterns. I can make one like it if I wish (I took a photo), but I’ll do it in strips instead of blocks, and I’ll join them together by knitting instead of sewing. It’s much faster and easier, and it’s a sturdier seam.

Last summer I wanted to make a pair of socks as a gift. I looked at the yarn I wanted to use (which was already in my stash, because I’m a sucker for beautiful yarn), and I decided I wanted a band down the front in an open, lace-like design. I already knew how to make a plain, basic sock. I once made a pair of gloves with a simple lace pattern on the tops of the hands, and this was going to be similar to that. After about an hour on the internet, I found instructions for a motif like the one I had imagined. After about another hour making sure I had copied it down right and it would work the way I wanted, I was making a custom-designed pair of socks for a special person.

Dishcloths offer a great, low-risk, low-cost way to experiment with color combinations. I’ve even tried to do it “wrong,” putting together colors I don’t believe will look good together. I only ever made one I thought was too ugly, but when I took a stack of dishcloths to a meeting and let people each pick one they’d like to keep, someone chose the “ugly” one.

If it weren’t for dishcloths, I doubt I’d have tried knitting entire blankets. I don’t think I’d know how easy it can be to work with two colors, or how gratifying it can be to put colors together. The practice led, indirectly, to the amazing world of stitch dictionaries, which have given me dozens of ideas for things to do.

I’ve never been one to color within the lines, so to speak. When I cook I use recipes as a guideline, but I will modify them to suit myself. It’s the same with knitting.

The ultimate test still awaits. I have never actually knitted a sweater, but I am almost ready to break that barrier. I decided I want to make myself a pullover with a shawl collar and some cables on the front. I did a search on Ravelry, found a pattern for a sweater that meets those criteria, found the book the pattern was published in on eBay and bought it, and bought enough machine washable merino wool/cashmere blend yarn to knit it. That’s a major commitment! Good yarn is expensive, and a sweater takes a lot of yarn! But I am ready.

 

posted by Amy on Oct 31

I decided I couldn’t let “Pinktober” go by without commenting.

First, I got my scan results yesterday. This scan unambiguously shows significant improvement. In fact, most of the cancer is gone, and what’s left is smaller, less dense, and less active. I’ve had a lot of scans, and the week I get one is always tough, especially the time between having it done and finding out what it shows. The first scan, almost four years ago, was great. Having such a positive result right out of the gate made me hope I might be one of the lucky few who get a permanent remission. That hope was dashed with the next scan, and I had to learn to like phrases like “stable” and “no new lesions.” But I’ve been lucky. Even the scans with mixed results usually also showed no new lesions, and I decided that was my personal criterion for calling them “stable.” My particular breast cancer subtype is normally very aggressive. Before targeted treatments were developed for it, it was “the bad kind.” Now, at least in my case, it’s pretty lazy and slow-moving. If a scan is “stable” and I have a decent quality of life, then I can live with it.

I’m going to stay on this regimen for three more months or until the side effects become intolerable. I got another treatment yesterday, and I don’t feel too bad. Knowing it’s working makes it much easier to conclude that the side effects are worth it.

But it’s “Breast Cancer Awareness Month,” and I have opinions. One aspect of it that doesn’t get discussed much is how it dwarfs other cancers. Did you know September is Ovarian Cancer Awareness month, and the ribbon color is teal? Not many people do.

The whole idea that we’re going to beat cancer with “awareness” is ridiculous. A few years ago Nancy Brinker, who was the CEO of the Susan B. Komen Foundation, the biggest of the “Big Pink” organizations, said she didn’t think the cure for breast cancer would come from a laboratory. That’s so patently ridiculous it doesn’t even require a response. Yet she has a big megaphone, and people listen to her. People whose lives are marred by other types of cancer feel left out. I don’t remember the source, but I once ran across someone complaining that she wished she had breast cancer, because it’s pink and sexy and popular. Thanks to Big Pink, breast cancer “survivors” get all the attention. Also thanks to Big Pink, people think we’re winning the “war” on this kind of cancer. You hear statistics about five-year survival rates in excess of 90%. That’s true but completely irrelevant. That’s because we’re spending billions of dollars screening millions of healthy women and finding it sooner. Breast cancer can come back in 6, 10, even 20 or more years, no matter how early it was detected and treated, and when it comes back it’s usually stage iv, which is incurable and fatal. People even confuse mammograms with “prevention.” Again, just think about that. It’s stupid.

We’re going to beat cancer–all kinds of cancer–with scientific research. The US is in the throes of forty years of anti-government ideology, where supposedly the government can’t do anything right and the magic market will fix everything. The budget for the National Cancer Institute hasn’t been increased in 11 years, which means it’s actually shrinking. Yet it was NCI that found an anti-cancer agent they named Taxol, which used to be made from the bark of the Pacific Yew tree. It’s now called Paclitaxel, and the original form of the drug was given the “popular” name of Taxol. Abraxane, which is Paclitaxel in a different suspension, in combination with two targeted therapies, is the drug that’s beating back my cancer right now. “Private” industry (and our for-profit health care system) has made billions of dollars on a discovery that we, the people initially made. There are many, many other examples, from every sector of the economy. The people who keep selling the idea that “big government” is messing everything up are lying. Government is how people collectively deal with issues–such as public health–that affect all of us and can’t be effectively or efficiently managed with private effort.

I’ll venture a guess that every single family in this country has lost a loved one to some kind of cancer. With a few notable exceptions, we have not yet won Nixon’s “war on cancer.” Instead of entering races or buying color-coded stuff or going for long walks, we should be putting more money into research, both individually and collectively. We spend under $5 billion per year on the NCI, about $15 per person. That’s ridiculous.

Finally, tomorrow is All Saints Day. In my religious tradition, it’s a time to recognize the “saints” in our lives, living or no longer with us. I don’t have a very detailed idea of what happens to us after death, but I think God is Love, and love never dies. Even when I thought I didn’t believe in God at all, I noticed what the Celts called “thin places,” where the boundary between our world and the next seems more permeable than usual. And, however you explain it or whatever you call it, loving beings–saints–make enduring, life-giving marks on those around them. Tonight I’m going to visualize all the loving, nurturing, kind souls I’ve known (including my dogs. . . .) and thank them for being.

 

posted by Amy on Oct 18

I had chemo 10 days ago. Today was the first day I felt “normal:” not too many side effects, optimistic, energetic, able to imagine actually accomplishing something. It was a good day. And I got some things done that have been hanging over my head for some time.

I get chemo every 21 days. Even if the next 11 or 12 days are high-energy, feel-good days, that still means nearly half of the time I’m operating at no better than 50% of what used to be normal.

I’ve been continuously undergoing cancer treatment since I was diagnosed in May of 2011, but not all treatments are equal. The one I’m on now is hard for me. I’m doing it in hopes of a payoff. I hope it will knock the cancer back to a level where I can maintain control with two antibody drugs that I tolerate much more easily. It’s kind of a “tough love” ploy. I want the cancer to know who’s boss. But maybe that’s what the cancer wants too. It’ll be interesting to see which of us is right. I’ll get a scan in 10 days and find out a couple of days later.

I am not “fighting” cancer. I’m trying to find some degree of mutual coexistence. Obviously, I would prefer for it to go away and leave me alone, and let me have a normal lifespan. But my mom died (in an accident) at the age of 50 and my dad died four years later at the age of 53, so what’s a normal lifespan? I’m 61. Every year that I manage to stay alive takes me just a bit beyond “too young to die.” Still, I have things I want to get done first. That PhD, for one thing. And you can bet that if I do manage to stay alive and jump through all the hoops I will absolutely send out a press release. Thank you, Boston University School of Theology, for giving me this opportunity. We’re both going to get a lot of positive attention if I manage to pull it off.

I really, really hope the scan shows a good response, because the last three months have been among the toughest since I was diagnosed. Pretty much everything has been hard, and chemo is a big contributor to the difficulty. I am going all in for a minor miracle. I realize it’s Quixotic. But really, what have I got to lose?

 

 

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